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The New GuestBooks @ Pituitary System: A new GuestBook / Forum system is available on a test basis. Please go to http://pituitary.mgh.harvard.edu/gb/ and choose the specialties area that addresses your interests. The old GuestBook system has been shut down. The Archives will remain, but new posts will no longer be accepted to the old system Please go to http://pituitary.mgh.harvard.edu/gb/ and choose the specialties area that addresses your interests.
REMEMBER: These Public GuestBooks are intended for Patients, Family and Friends as a way to:
Please Note: This is an unmonitored guestbook. We can not endorse or be responsible for its content. It is not, of course, an appropriate place to seek medical advice; rather to provide mutual support. For medical advice consult your physician. Note: We do not ordinarily edit the posts to these GuestBooks, so please be careful with what information you post. If you do not want to be contacted by others, then do not post your e-mail address. Remember - these are public GuestBooks and search engines will find your e-mail address. THANK YOU ! GUESTBOOK 1997
Hi it's me again, sorry the
server warned me it was going down so I closed but now I'm back.
To make a short story long we thought our worry's were over
however the family is becoming increasingly concerned with my
sister's frequent colds and sore throats. She still seems to
have some days with little energy. The colds seem to last longer
than the norm as well. I would appreciate any info re: post
Cushings recovery. I will pass it on to her since she isn't
online yet. Thanks, Big Sis My sister was diagnosed with Cushings syndrome aprox 4 yrs ago. She underwent surgery and part of her pituitary gland was removed, thankfully not all. Her symptoms actually began shortly after she graduated from high school. When she was 17 she literally woke up one day with jowls. She was (and is) a very attractive woman and had begun to gain weight. She had recently moved to Sacramento to live with our Dad and he insisted she see the doctor at Kaiser due to the sudden changes in her appearance. My sister remembers the visit in vivid detail, because the doctor told her she was just overweight and needed to stop eating. My sister was humiliated, embarrassed and willing to accept this since there were no other symptoms. After 10 years of struggling with her weight (concentrated in the stomach area) unsightly hair growth, missed menses, an extremely premature baby (miracle that she was), frequent minor illnesses and fatigue she was diagnosed. Guess who got the ball rolling? A substitute electrolysis technician filling in for the regular tech Angie saw on a regular basis. She took one look at my sister and said I quote, "I can take your money, and remove the hair if you want but you have a medical problem and need to see a doctor not me". It spurred my sister to go back to the doctor who said my sister was a textbook case of Cushings. My sis has been through a lot since, surgery, medications (sorry I can't tell you which ones, I just know she was so sick from the side effects she thought she was dying) a second premature baby (the dr's told her she had probably a two year window to get pregnant if she wanted a second child) severe back pain, and a hump on her upper back. It was a great sigh of relief to all of us when it was determined she wouldn't have to take the medicine every day for the rest of her life. My sis looks great today, thin, stylish, more enery but not a lot of stamina. An interesting side note is after her hair grew back it was thinner but with a natural curl that hadn't been there before Sue Mayer <smayer_AT_mtaonline_DOT_net> Palmer, AK USA - Wed Dec 31 3:21:14 1997 this page really makes me feel that I am not alone having to remember to take my Parlodel daily nancy johnson <Nsj31_AT_aol,com> plano, tx USA - Tue Dec 30 19:21:16 1997 Does anybody know if a person can drink alcohol if they are on dostinex? thank you Scott James <mkuhar_AT_microserve_DOT_net> USA - Tue Dec 30 12:14:28 1997 I have a pituitary microadenoma and am looking for information regarding the condition. Alexis Mills <amills67_AT_couriernet.infi_DOT_net> Louisville, KY USA - Sun Dec 28 9:16:36 1997 Are there any others who have family members with endocrine or pituitary problems? I am undiagnosed but have pituitary hyperplasia with a possible tumor, osteopenia, hirsuitism, abnormal vitamin D levels, abnormally low ferritin, and abnormal elevations of various hormones. Two out of three of my brothers have endocrine abnormalities. One has abnormally low IGF-1 and abnormal vitamin D levels -- another has idiopathic diabetes insipidus, abnormal vitamin B levels, and hypothyroidism. All of us were in our twenties when our symptoms first began. Any information or possibilities would be greatly appreciated. Please email me directly in addition to posting here. Thanks! Vicki <NoMedDx_AT_aol_DOT_com> USA - Fri Dec 26 4:09:54 1997 Does anyone have information or experience with CRH-secreting tumors? It is thought that I may have one in my cheek/parotid area which is very rare. Please email me directly in addition to posting here. Thanks! Vicki <NoMedDx_AT_aol_DOT_com> USA - Fri Dec 26 4:01:15 1997 Great site!I was diagnosed with a pituitary tumor (macro since it was 1 cm in size)in Nov.1989.I was 33 years old then and had 3 kids ,the youngest was 20 months old.I have no idea when did this tumor started growing in my pituitary ? I got pregnant with my first child soon after I got married at 23 , i breastfed for 5 months and was having regular menustral periods from 6 weeks after delivary(to my mothers surprise).My second pregnancy was also quick ,I conceived right after my IUD was removed . I had a miscariage 2 years later.then I got pregnant a year after that.After my tumor was diagnosed,I had two more kids born in 1991&1992.My problems are terrible migraine headaches obesity! i now weigh 200 lbs. i used to weigh 125 lbs. i was very athletic ,now i am always tired and find it very hard to stick to any form of exercise.I'm on parlodel but I don't tolerate it that well but i take it anyway.Please help with any suggestion for weightloss .I'm very depressed about my weight especially that I like to dress elegantly and I was always regarded as a model athlete.Also if anyone knows about the university of virginia medical center . thank you. mneera <pinkgardenia_AT_hotmail_DOT_com> washington, DC USA - Wed Dec 24 19:46:05 1997 Hi, I was surprised to find this page. I thought well work is a bit slow today so I'm going to surf the web. I found this page and I thought I'd put in my 2 cents. I was 14 years old when I was diagnosed with a pituitary tumor. Lucky for me it was benign. But the road to recovery was long and hard and full of unknown events. I am now 26 and sometimes it feels like a dream, but there is proff that I'm a different person. I'm stronger and I learned to enjoy life more. I thiank God for my parents and family support and I also am thankful for my sense of humor. Because of this, I made it through this trying time with flying colors. if for any reason anyone would like to talk about fears or share thoughts, my ears and my heart is open. Thanks! Lynn Lynn Martinez <lynn_martinez_AT_non-hp-greeley-om2.om.hp_DOT_com> USA - Tue Dec 23 16:55:49 1997 I had surgery to remove pituitary tumor 11 years ago and had radiation treatment shortly after surgery. So far, there has been no recurrecnce of the tumor - I currently take Dostinex and use a testosterone patch every day and am feeling well. David Hangen <hanghome_AT_worldnet_DOT_net.att> Herndon, VA USA - Mon Dec 22 12:04:05 1997 We just found out that my sister has pituitory tumor and i would like to get information about it. Serkalem Admasu <admasu_AT_mail.wsu.edu> pullman, wa USA - Fri Dec 19 1:47:57 1997 Thank you all for sharing your experiences. I had surgery on Oct. 15th to remove a pituitary tumor of about 2.5 cm. I learned today, Dec. 18, that most of the tumor remains. The neurosurgeon who performed the surgery recommended additional surgery to remove the tumor because it is pressing on my optic nerve. I originally agreed to the surgery because I was told my prolactin level was extremely high (450) and, there was little chance that medicine would or could reduce a tumor that large. However, after reading your posts, I'm going to try medication to reduce its size. I'm not comfortable with another attempt. Besides, it seems from the postings that some of you had prolactin levels significantly higher than mine and medication seems to be working. It's comforting to know I'm not alone. Feel free to contact me directly at zuri_AT_erols_DOT_com. Thanks, Connie Connie Judge <zuri_AT_erols_DOT_com> Springfield, VA USA - Fri Dec 19 0:25:05 1997 I was relieved to find this page. I've been looking for some type of support system and found it enlightening to read and discover that I'm not alone. Eileen <EILJON_AT_PRODIGY_DOT_net> Athol, MA USA - Thu Dec 18 9:18:03 1997 I was diaganosed with cushings in Oct. 96. I had surgery to remove a cushings type tumor from Pituatary gland. I had ALOT of support from family but I still feel alone in this venture. I would like to talk to anyone that has had or has cushings. I feel very blessed this year to even be able to send Christmas cards or be able to concentrate on anything else besides how I feel. I havent had too many problems with recovery but still wonder alot about my ACTH and CORTISOL levels. Is there anyone else that has chushings that would just like to talk to someone with same? CHERYL <FLYINGANGELS_AT_webtv_DOT_net> USA - Thu Dec 18 8:57:23 1997 Thank you for your information. It has really helped me. I am now educated enough to help my Doctor help me. Suzanne Ocampo <wifeodevil_AT_aol_DOT_com> albany, or USA - Wed Dec 17 2:09:27 1997 I started Dostinex 1 week ago. Does anybody know how long takes to bring your prolactin level down? Also, how long does it take to start menstrating again? I am new at this so I appreciate any information. Thank you. Renee Zeiger <Renee_Zeiger_AT_yr_DOT_com> New York, NY USA - Tue Dec 16 11:08:09 1997 I've been on parlodel for almost 2 years now. A fourth MRI shows the procactinoma down from 18cc's to about 2cc's. My prolactin level is down from 1800 to hovering between 5 and 8. Unfortunately, my testosterone level stayed between 100 and 140 in spite of the normal prolactin level. My doctor put me on a huge testosterone patch a month ago. This brought my testosterone level back to normal, so far, without raising my prolactin level. I feel wonderful. I've managed to get used to the parlodel post nasal drip and working out daily I am starting to regain muscle mass. I'm still feeling very lucky. My doctor went back and tested all the patients in his practice that had similar symptoms to mine. He is now treating 12 patients with prolactinomas! Howard Littman <idfixer_AT_pacbell_DOT_net> North Hollywood, CA USA - Sun Dec 14 0:28:48 1997 I have just been diagnost with acromegaly. I would like to know how dangerous the surgery is, side effects, potential for death, etc. I would like to communicate with other people with this desease. I am 45 years old. Greg Bencsik <gregbencsik_AT_netreach_DOT_net> Sellersville, PA USA - Fri Dec 12 9:14:04 1997 Acromegaly, familial but not related to MEN-1. Generally our problem starts at birth with babies born with a birthweight over 10 lbs. It was also found we have a chromosome abnormality involving the 11th chromosome but not in the area of the MEN-1 gene or Beckwith weidemann gene. Our syndrome includes acromegaly AND gigantism but no tumor was found except on autopsy it was found that my 7'2" tall acromegalic brother had both basophilic and eosinophilic adenomas. I also had a great great uncle who was "giant" (Italian). WANTED: I'm looking to talk to anyone with the same types of problems OR to possibly find the family members from my great great uncle. He was a Doctor and many called him uncle doc because his first name was so long..(Ferdnanalawishes) Please respond Chris Chris <Crissee_AT_ezy_DOT_net> De USA - Thu Dec 11 7:41:58 1997 I am almost a year post-op from a pituitary tumor removal for Cushings. I feel lousy and I've developed what seems to be arthritis-like aches and pains in my joints and especially my hands, but an arthritis blood test shows nothing. In addition, I am going back to my surgeon because within the past few months, I've been having a constant runny nose on the side the surgery was done, and he wants to run some tests. Has anyone else experienced a problem like this so long after surgery? My surgery was done in Feb. '97 and this problem with the nose just started in about September. Any feedback is greatly appreciated. Nancy Morin Nancy Morin <nmmorin_AT_aol_DOT_com> Hooksett, NH USA - Wed Dec 10 20:31:20 1997 I've been ill for 13 years with no diagnosis. I was once very optimistic about being diagnosed but now I have no real hope. I have no medical insurance because I'm told repeatedly that it is a pre-existing condition. I have regular menses, but every month, the night prior to my period, I awaken during the night gasping for air, body feeling very strange, nervous. For the next few nights I awaken feeling as though I'm drugged, hardly able to take a breath and not able to stay awake, yet I keep waking up having to take shallow breaths. I suffer from extreme fatigue, almost feeling drugged for those days. At other times I suffer violent mood swings, a feeling of extreme pressure in my head and an uneasy feeling in upper left epigastric area of my abdomen. Feel my heart skip beats in this same area. Emotional instability brittle, peeling fingernails, dry skin and hair. Does anyone have a clue? My thyroid tests are normal? I'm really tired of all this. Vicki Vicki <VictoriaJ_AT_prodigy_DOT_net> USA - Mon Dec 8 22:25:23 1997 Does any one know about the class action suit concerning the thyroid medication, Synthyroid? cweber USA - Sun Dec 7 1:04:43 1997 all you pit patients out there~~~~~~~~~ check out PTNA bulletin board~~~~~~~~~~ Pituitay Tumor Network Association~~~~~ www.pituitary_DOT_com scroll down and click on bulletin board(message board) click again on bulletin board and you are there! They have threads that can continue on and on about different topics! pituitary patient USA - Sat Dec 6 15:03:30 1997 looking for similar scenarios, and how to deal with annoying problems caused by pituitary adenoma Christine Biehle <wiccancb_AT_aol_DOT_com> Houston, TX USA - Fri Dec 5 16:46:54 1997 Hi Robert, I tried to e-mail with no luck. Is your address corrct. I was just in Dover visiting sister after trip to MGH. Glad surgery went well. Like to hear what type of tumor you have. Trish Trish M <acrowhat_AT_hotmail_DOT_com> Brunswick, Oh USA - Fri Dec 5 13:26:28 1997 Brooke Swearingen did a fantastic job with the operation on my pit tumor! robert weeks <rw3052_AT_rscr_DOT_net> dover, nh USA - Wed Dec 3 16:34:40 1997 I just found website the other day,I have been looking for awhile and the searching has paid off!! Reading about others has helped me immensly I thought I was the only one.I first noticed with reduced libido that sent me for help,when bloodwork returned I was told and refferred to an excellent endocronologist he had me get a catscan and an M.R.I. that told me my prolactin levels were that of a pregnant women and that my tumor was 7-8 mm. Doc prescribed Parlodel or Bromocriptine and told the later was a cheaper generic brand. 2.5 mg tab before sleep and half that in morning, no adverse reactions that kept me working as a bricklayer sometimes four or five scaffolds up.Now my prolactin levels are normal,but libido still hurting so Doc found my testosterone levels were too low and I'm receiving monthly injections of testosterone, 200mg,I'm forty and my libido has returned like I was younger. It's been two years since last M.R.I. going back in March to see if it shrunk,if it did Doc says Parlodel for rest of life:( But if works why not. Thanks to all who wrote list makes a big difference as a group reading about others. Hope yall get better. Marc Walker Marc Walker <jay.m_AT_sympatico.ca> Mississauga, On Canada - Tue Dec 2 17:33:40 1997 pituitary patients check out pituitary_DOT_com and look on theit bulletin board it will take you three clicks to get there sue USA - Tue Nov 25 11:31:57 1997 In June of this year. I had a pituitary tumor removed. I can honestly say that I feel much better than before. When I first became sick with the tumor. I only weighed 110 pounds. At the time of surgery I weighed 160 pounds. I am barely five feet tall. My thyroid seems to be fine. No matter what i do, i can not lose this weight. I am on a 1000 calorie diet. 15 grams of fat or less. I walk, care for 2 children and attend law school full time. My doctors do not seem concerned about this. I have a high cholesterol, and a epigastric hernia due to the weight. My insurance company will not help me until I gain 50 more pounds.. I really do not understand that. I can not walk a flight of stairs with out getting out of breath. I can not bend over and tie my shoes. I feel very unhealthy.. Does anyone know any resources or anything that I can do differently. Diet and exercise are not helping.. Cathy <cathy_AT_tnproweb_DOT_com> Dover, Tn USA - Mon Nov 24 23:30:15 1997 I do not like Parlodel! bad dreams, can't sleep more than 2 hours a night, shaky vision, can't look at an object and concentrate on it without imediatly zoning, head achs, memory is fading. Phoooy! I have the smallest dosage there is and it is making my life terrible! I want a natural substance found in foods and vitmins. Maybe some meditation... I'm open! HELP! I think it is making me a bit paranoid too. Say what's with "Remember, no medical questions, please!"? I have to get off this stuff. redon <redon_AT_geocities_DOT_com> Geo, NY USA - Sun Nov 23 5:34:47 1997 I had surgery for Cushing Disease 2/97. They had to remove 95% and stop the 5% left from producing the ACTH that was causing the problem.The diagnosis took 4 to 5 years and I'm having a very slow recovery . I have severe headaches, body pain & fatique. I would love to here from someone who had this much of their pituatary removed and a non functioning altogether now....Thanks Judy Cherry Judy Cherry <judy_cherry_AT_hotmail_DOT_com> Missouri City, tx eb USA - Fri Nov 21 10:33:20 1997 I had surgery for Cushing Disease 2/97. They had to remove 95% and stop the 5% left from producing the ACTH that was causing the problem.The diagnosis took 4 to 5 years and I'm having a very slow recovery . I have severe headaches, body pain & fatique. I would love to here from someone who had this much of their pituatary removed and a non functioning altogether now....Thanks Judy Cherry Judy Cherry <judy_cherry_AT_hotmail_DOT_com> Missouri City, tx eb USA - Fri Nov 21 10:33:03 1997 This is my third message. I was diagnosed with a Pituitary tumor about 2.5cm in the middle of september. On October the 23 my Prolactin level was 1796. After 4 weeks on bromocriptine (paradol) 6 2.5mg. tablets a day my level is now 243. I'm hoping the next test will be better again. I had some side effects but managed to get throught them B.Cashley <Cashley_AT_sympatico.ca> Oshawa, On Canada - Thu Nov 20 22:08:36 1997 I had Cushings Disease in 1987, and was given a transethmoidal hypophysectomy of pituitary adenoma in Addenbrooks Hospital Cambridge (it was successful at the time). Just recently I have been experiencing symptoms (I was hoping that it was the menopause) unfortunately my ACTH levels are high again and an MRI has shown up a 8mm microadenoma I am now living in Wisconsin and the endocrinologist here seems very vague. I was hoping that someone out there could give me some advice and encouragement about recurring pituitary adenomas. Diane <SYKES4FAM_AT_aol_DOT_com> USA - Tue Nov 18 19:35:03 1997 I am looking for any information at all about Norprolac. It is presently in the test process in Canada and therefore there is no information available. Anyone know anything. PS This is my work e-mail. Brenda Charuk <cdc_AT_ccinet.ab.ca> Edmonton, ab ca - Tue Nov 18 18:25:44 1997 Hi everyone, Just found this site and I'm amazed at the number of people with pituitary tumors. I was diagmosed with 1 cm pituitary tumors in Jan. My levels have all been normal. Dr.s advise me to have levels rechecked every 6 months, have 6 month eye exams and have repeat MRI in one year. I'm somewhat leary about the wait and see approach. In 1993 I had a right thyroidectomy. I had a adenoma the size of a golf ball that we had watched for 6 years. Was told surgery more risky that having the growth. The last 3 years that I had it 3 times I ended up in the hospital vomiting blood from tear in esophagus when I got a gastroenteritis bug. Since removal I have not had this problem whenever I have got a 24 hour virus. Adenoma was only recommended to be removed after my brother developed thyroid cancer. Don't get me wrong I'm not for having surgery either unless absolutely necessary. I'm interested in finding out as much as possible about others experiences with their symptoms and treatments of their pituitary tumors. Thanks Ruthanne <rboothby_AT_rocketmail_DOT_com> Kokomo, IN USA - Tue Nov 18 14:33:58 1997 I am interested in finding out about pituatory cysts. Please forward a general information email address. Thank you. Leigh Taylor <leighw_AT_wave.co.nz> Hamilton, NZ - Mon Nov 17 5:32:15 1997 I was wondering if anyone has taken Clomid and has a microprolactinoma? I had read where Clomid was contraindicated with pituitary tumors? Does anyone have any information on this if so please let me know. Thanks!! Deb <tdkp_AT_softdisk_DOT_com> La USA - Fri Nov 14 0:54:30 1997 Nice site. Anyone out there have Nelson's syndrome? (Pituitary tumor following adrenalectomy) Anyone had Pituitary tumor remove with endoscopy? Please use this address to respond ldrucker_AT_juno_DOT_com Les <ldrucker_AT_juno_DOT_com> Costa Mesa, CA USA - Wed Nov 12 17:14:06 1997 Hello, I was recently diagnosed with a pit.tumor (a very small one) but my prolactin level seems to vary on every test from about normal to 50. I know this is not as high as others but it still is a concern. I had an MRI done and every doctor who looks at it gives me a different story. I have been expeirenceing headaches for over a year, I tend to have numb fingers and legs, very tired, lack of energy, slowly lossing memory and concentration, and severe depression. I have just started parlodel 2.5 mg and had violent reactions and was advised to go to half doses. I have many questions and I am very confused, can anybody help me. Thanx Sunnie Georgia <PacCstChic_AT_aol_DOT_com> USA - Tue Nov 11 15:41:05 1997 hi.i'm forty three years old and five years ago i was diagnossed with a macro prolactin secreting pit. tumer. i had surgery plus gamma knife. i now have a "minimal" pituitary gland. i use synthroid, delatesteryl, dostinex. my question is; is there any new drug on the hor izen that replaces prednisone. i'm hypocortical but do not take prednisone because of the long and short term side effects. i greatly apreciat any information anyone can give me jonathan c <jonathanc_AT_ids_DOT_net> providence , ri USA - Mon Nov 10 21:07:58 1997 Does anyone know what a normal range is for IGF-1 in a 41 yr old woman? Judy <lubera_AT_transport_DOT_com> OR USA - Sun Nov 9 16:32:30 1997 Im was happy and surprised when i found this web site. I tought I was alone. Im sick of people staring at me when they ask me how old I am I tell them Im 23 and they say I look 16. Im glad to see that there are other people out there like me. I was diagnosed with a Tumor on my pituitary gland on March 15,1989. It was removed along with my pituitary gland. Since then I have suffered with severe fatique. I take Hydrocortizone, DDAVP nasel spray, Synthroid, I took Human groth hormones, Male hormone Patchs, and a whole lot of Vitamans. Please E-mail me Thanks Frank. sever fatique. Frank Frank Campagna <LDOOM_AT_ameri-com_DOT_com> Toms River, NJ USA - Sat Nov 8 15:19:10 1997 I was diagnosed with a Tumor on my pituitary gland on March 15,1989 It was removed along with my pituitary gland. Since then I have suffered with sever fatique, Social Security do's not think that this is a disability. so if anyone out there knows of any unconventional medicines please E-mail me thankyou. Frank Frank Campagna <LDOOM_AT_ameri-com_DOT_com> Toms River, NJ USA - Sat Nov 8 14:38:05 1997 I didn't know a site like this existed. James Crockett Baltimore, MD USA - Fri Nov 7 19:30:04 1997 Diagnosed on 8/8/97 with pituitary macradenoma secreting prolactin. Surgery removed 55% of mass but left 2 cm x 2.2cm x 2.5 cm around left internal carotid artery. Same symptoms persist. Extremely moody with immediate swings. A great deal of anger and frustration. Most recent setback of hypertension returning now prescribed Prinivil and am experiencing the most severe depression of my life. I am also HIV+ for over 10 years and would like to hear from anyone or any research being done on long term survivors with similar neurological disorders. On triple cocktail for over 35 weeks tcell count now over 1000 and non-detectable HIV Viral Load. Also on Parlodel and awaiting first test results back. At time of surgery Prolaction level over 1000, post op 650. Endocrinologist and Neurosurgeon are talking radiation if tumor does not significantly shrink by mid December. Seeking others experiences of similar nature. Joel <joelbears_AT_aol_DOT_com> Seattle, WA USA - Fri Nov 7 8:02:59 1997 Since my first note on Sept.28/97 I have learned a lot about pituitary tumors. The following 4 weeks were like a bad dream. I was booked for surgery on Oct.28/97 to have my 2.5 centimeter (1 inch) adenoma removed On Oct.24/97 I was told by my endocrinolgist that I had Prolactinoma and the surgery was not necessary and put me on Bromocriptine (pardol). My prolactin level was at 1796 with the norm being 18 in Canada. Within 1 week I noticed a big relief in my headaches. I go back to endo in 2 weeks to have my prolactin levels checked. I've got all my fingers crossed. B.Cashley <cashley_AT_sympatico.ca> Oshawa, ON CANADA - Thu Nov 6 21:21:44 1997 I am a 30 year old maleand have recently tested to have a low testosterone level (30)which my docter says is not really anything to worry about.I dont trust him because he told me this test would be a wast of time. I had previosly tested low on b-12 and dhea with previous docter. I have excrutiating pain in my back shoulders head and legs. I think it is Fibromyalgia but my docter says there are only 30 proven cases of fibromyalgia. I cant sleep have no consetration, and no memory.Does anyone know about this and what other tests should I get. I have no energy and cant work. I have no insurance, does any know of insurance company that will accept Fibro preexisting condition. Thanks for your help. Kevin Williams <kevinmw_AT_earthlink_DOT_com> USA - Thu Nov 6 19:44:18 1997 My name is Leslie Cunningham and I was diagnosed in April '97 with pituitary Cushing's (over production of cortisol). Currently, I am 5 months post-op for removal of a pituitary adenoma (8mm). I'm just courious about how other peoples recoveries are going. I fully expected to be back a work at 3 months post-op. However, at 5 months post-op I'm still experiencing fatigue, muscule weakness, achy joints, decreased immunity (I have difficulty fighting of illness' - I've had a chronic sinus infection since surgery),occasional nausea, and if I'm under any stress I completely lose focus. I haven't returned to work because "how I feel" is very unpredictable - Some days I feel pretty good, but others, I can hardly get out of bed. I want to know how your recovery is going; good or not-so-good, let me know. I keep hearing about people who are back to work in 6-8 weeks post-op WOW!!!. But, I feel mines taking forever. Anyone else feel that way? At my 3 month post-op check up, my doctor tested my adreneal function. The test indicated that my adreneal glands were not functioning properly. Based on that test, he suspects it will be a 10 to 11 month recovery instead of 6 months for "normal" pituitary function. Can anyone relate to me. I'd really like to here from you. I feel kinda of alone in my plight. I guess what I really want to know is: "is what I'm experiencing normal?" Thank for any help Leslie Leslie Cunningham <Leslybug_AT_pacbell_DOT_net> Woodside, CA USA - Tue Nov 4 20:46:16 1997 Hello~~I was at MGH November 27th for my prolactinoma. I just want to say that they are WONDERFUL at MGH!!! My doctors there were Dr. Rentomius~~now Dr. Cappola~ she got married:) and Dr. Katznelson. I can't believe how helpful and patient they were!! Dr. Cappola is just wonderful!! She explained everything to me and my husband in a way that we actually understood!! Dr. Katznelson has a very calming manner to him and he was also great in explaining all our options! I was put on Dostinex since the parlodel I was on for 7 years and the permax I was on for 1 year wouldn't bring my prolactin levels down past 67. When my tumor was found in 1989 my prl level was 360..... They listened to my every word and answered every one of my 24 questions....LOL I couldn't think of a 25th question:) Anyway~~~all I really want to say to anyone out there is~~if you are going to MGH~~in my opinion~~you will be very happy! They make you feel comfortable and you know that when they are telling you something that they do indeed know what they are talking about! WHAT A GREAT FEELING! Now~~I'm on the road to see if Dostinex will bring my prolactin level down into normal range. I am 33 and have not had a period since 1988. So~~as Dr. Cappola and Dr. Katznelson said~~~ "One thing at a time" Take care and good luck to all! Vicki M Vick McGee <ZoCon3_AT_AOL_DOT_com> Johnstown, PA USA - Mon Nov 3 15:09:01 1997 The previous email address I gave was incorrect. This is my correct address. Leslie Sartin <cen26264_AT_centuryinter_DOT_net> Alexandria, LA USA - Fri Oct 31 18:05:09 1997 I had surgery for a pituitary tumor on August 6, 1997. I am still very moody and emotional and I just wonder when it is supposed to get better. Everyone says it takes a while, but I sometime still want to give up. If anyone else has these feelings please feel free to write me. Leslie Sartin Leslie Sartin <26264_AT_centuryinter_DOT_net> Alexandria, LA USA - Fri Oct 31 1:20:48 1997 I have been diagnosed with acromegaly, but the doctors have not been able to find the tumor. Has anyone else had the same problem or know of anyone who has? L. Bevel <lbevel_AT_redstone.army.mil> Huntsville, AL USA - Wed Oct 29 10:28:37 1997 Thanks so much for this website. I have a very good friend who has yet to be diagnosed although from what I have read there is something wrong with her pituitary gland. She has now been in hospital for 47 days with no diagnoses. These websites sure help to make it seem like I can do something to help her. J jan <jalexander_AT_oln_DOT_com> Thunder Bay, On Canada - Sat Oct 25 16:36:21 1997 Had pituitary removed in 2/97 due to Cushing's disease. Still have not experience weight loss following surgery. Still have severe headaches and hormone imbalances. Doctor advised that I had Cushings 4 to 5 years before positive diagnosis. Does anyone else have similar circumstances? Judy Cherry <judy_cherry_AT_hotmail_DOT_com> Missouri City, TX USA - Sat Oct 25 1:00:54 1997 I had surgery at MGH in June, 1997 for removal of an 8mm cystic prolactinoma. Now, almost four months post-op, LIFE IS GREAT!! I feel better than I have in years!! No more headaches, fatigue, lost appetite, dizziness, etc, etc, etc. So far, I feel like my story has a "happy ending" and I'd be more than happy to share my experiences with anyone else who is facing a possible surgery. Mary Kay <mary_AT_zjs_DOT_com> Milwaukee, WI USA - Fri Oct 24 9:42:07 1997 My pituitary tumor was diagnosed thirteen years ago. Parlodel and Radiation have all but removed the tumor. Now I suffer from Hypopitutarism and I am about to enter into a program for those with hypopituitarism and resultant Human Growth Hormone deficiency. I would like to hear from anyone who is in the same situation. Dave <Dave2969_AT_aol_DOT_com> Bronx, NY USA - Mon Oct 20 23:20:39 1997 Sky Watson please check the e-mail address you entered in the guest book.My e-mail came back undelivered that I sent to you.Judy Judy <lubera_AT_transport_DOT_com> USA - Mon Oct 20 13:18:09 1997 In 1964, I was diagnosed with a large chromophpbe adenoma and advanced acromegaly. I had a left frontal hypophysectomy and radiation. My sellta turcica is empty. except for problems with coronary arteries I have lived a normal life. My great grandfather was called the giant and two of my children have pituitary and hypothalmus problems. Stuart A. Levinson <stuarta_AT_hic_DOT_net> Houston, TX USA - Sun Oct 19 0:43:16 1997 I first started reading this guest book in April 1997 have been amazed at the number of people who share the same concerns and symptoms as myself. I have been taking Parlodol for 11 years now, and am happy to report that my quality of life has vastly improved since before I was diagnosed. As I continue to read entries from other Pituitary tumour sufferers, I reflect on some symptoms I had that were never linked to my pituitary, but wonder if they could be, since I haven't had these symptons since being on Parlodol and getting my Prolactin back to normal levels. I'm wondering if anyone has ever had seizure-like episodes (non-violent, sully-conscious)in relation to this health problem. I used to have periods of time when I would experience this strange sensation of not really being able to feel "connected" to the motor movement on one side of my body. It's very hard to describe, but I would have this feeling for a period of 1 - 3 days, then my entire left side of my body would go completely numb and if I was standing up, I would collapse. All the while I was fully conscious. Then the feeling would subside and I would carry on normally, other than it scaring the heck out of me. I always thought it was stress related. I finally got up the nerve to go to a neurologist and they couldn't figure it out at all. All I know is that I haven't had a single one of these episodes since dealing with the pituitary tumour. Has anyone else ever felt anything like this? Also has anyone ever had problems focusing their vision? I am quite near-sided, and get my eyes checked annually. Peripheral vision checks out normally. However, sometimes my vision seems quite blurry. It doesn't happen all the time, though. I'd appreciate hearing from anyone else who has experienced any of these things. Thank you for indulging my lenghthy entry. Roxy <Roxy_AT_MNOpera.org> USA - Fri Oct 17 12:52:45 1997 I have been diagnosed with a pituatary tumor for one year now. What may be some signs of the medication not working. jackie <jc1_AT_ra.msstate.edu> USA - Tue Oct 14 15:27:18 1997 Hello, again! I forgot some things in my previous posting. Some additional symptoms are: Tachycardia (120 bpm/resting w/o exertion); shortness of breath (after only walking a few steps); easy bruising; frequent nose bleeds; periodic swelling and pain in right jaw area; abnormally low serum ferritin (even w/ supplementation); intermittent low-grade fevers; chronic pulmonary infections; light/glare intolerance; chemical sensitivities; dry mouth and eyes; sleep disorder (difficulty in falling and staying asleep, lack of deep sleep, frequent awakenings, unrefreshed sleep), and fatigue. Thanks again in advance and I look forward to hearing from you. Vicki <NoMedDx_AT_aol_DOT_com> USA - Tue Oct 14 12:00:27 1997 Hi! I'm just wondering if anyone else has other medical problems in addition to pituitary and other endocrine problems. I'm trying to find out if there's a correlation or if they're just separate problems. In addition to an abnormal pituitary gland (atypical shape and enlargement) with a possible adenoma along with intermittent abnormalities of various hormones (i.e., DHEA, DHEA-S, cortisol, prolactin), I also have mitral valve prolapse; abnormal pulmonary function; a connective tissue disorder (i.e., finger contractures, tightening of skin over hands, loss of padding on hands and feet, etc.); other tumors, cysts, and calcifications (i.e., unidentified "mass" extending from cheek to temple muscle, nasopharynx cyst, uterine fibroid tumors, fibrocystic breasts, previous ganglion cyst on collarbone, calcified growth on elbow, calcified area in cheek, heel spurs); frequent sinus infections; unusual infections (i.e., mycoplasma in serum; psuedomonas in sinuses; unusual EBV abnormalities); osteoarthritis; progressive myopia (normal 20/20 uncorrected vision until age 24); migraine auras w/o the headache; periodic dark spot in central vision of left eye; cold hands and feet; numbness and tingling in arms and hands; hirsuitism; herniated disks in neck and back; loss of normal curve (lordosis) in neck and back; premature graying of hair (began age 6 -- no family history of it); osteopenia; possible malabsorption problem; abnormal Vitamin D and osteocalcin levels; etc. Please contact me if you share any of these symptoms. I would also be interested in finding specialists who could help me sort through the above. I'm 36 years old and have been undiagnosed since 1989. Thank you for any advice or referrals and best wishes to all of you. Vicki <NoMedDx_AT_aol_DOT_com> USA - Tue Oct 14 2:29:50 1997 I submitted a comment to this site in August but gave the wrong e-mail address. I have recently started on Dostinex. Am having many symptoms that others also complain about. Dizziness, headache, gained 35 pounds in the last 1 1/2 years, joint pain, blurred vision, joint pain and extreme fatigue all the time. Would love to correspond with others who are also going through this. Judy Streiber <Streiber_AT_bellsouth_DOT_net> Stuart, Fl USA - Mon Oct 13 18:07:34 1997 People with pituitary problems check out the PTNA website click on messages,...then meassage board..great site like this..www.pituitary_DOT_com pit patient USA - Mon Oct 13 12:05:45 1997 I am new to the Pituitary Tumor subject as I have recently found out I have a small one...I am 21 years old and have had symptoms of galactorrhea for three years. The funny thing is that all of my prolactin levels and other hormone levels are normal..I am not able to take Parlodel because I get tremendous shakes and nausea...I am currently seeking other ways to treat myself and my family.... Sky Watson <sensky_AT_primenet_DOT_com> Chandler, AZ USA - Sat Oct 11 16:16:38 1997 I found out that I had a Pituitory in July 1995 and went on Parlodel in Oct. 1995. Within three months my eyes were nearly back to normal. The tumor was pressing on the optical nerve. My doctor didn't feel that I was a good canidate for surgery and after testing they found the prolactim gland was elevated enought for me to take the pill. My blood work is down to near normal but the tumor has not grown or gotten any smaller at my last MRI in July. I will have another one in January and am hoping that it will show some change at that time. Thank you. Mary Walton <mwalton_AT_wwd_DOT_net> Ashland, KY USA - Fri Oct 10 22:54:26 1997 I found out that I had a Pituitory in July 1995 and went on Parlodel in Oct. 1995. Within three months my eyes were nearly back to norman. The tumor was pressing ont he optical nerve. My doctor didn't feel that I was a good canidate for surgery and after testing they found the prolactim gland was elevated enought for me to take the pill. My blood work is down to near normal but the tumor has not grown or gotten any smaller at my last MRI in July. I will have another one in January and am hoping that it will show some change at that time. Thank you. Mary Walton <mwalton_AT_wwd_DOT_net> Ashland, KY USA - Fri Oct 10 22:24:54 1997 I found out that I had a Pituitory in July 1995 and went on Parlodel in Oct. 1995. Within three months my eyes were nearly back to norman. The tumor was pressing ont he optical nerve. My doctor didn't feel that I was a good canidate for surgery and after testing they found the prolactim gland was elevated enought for me to take the pill. My blood work is down to near normal but the tumor has not grown or gotten any smaller at my last MRI in July. I will have another one in January and am hoping that it will show some change at that time. Thank you. Mary Walton <mwalton_AT_wwd_DOT_net> Ashland, KY USA - Fri Oct 10 22:24:47 1997 Hello. I would appreciate hearing from anyone who has been diagnosed with FIBROMYLAGIA. I visited my Internist today, and this may be my new addition in my life. I have a sketchy one page overview From the American College of Rheumatology; but it would be comforting to hear first-hand from someone who has dealt with it. I am a pituitary veteran of nearly 20 years and I expected certain things to happen down the road. Well, mid -November, I am to visit the Rheumatologist for "Full-tilt-testing". Thanks for any info you can share. Carla Dolney <kencarla_AT_erols_DOT_com> VA USA - Thu Oct 9 21:09:17 1997 Can anyone tell me or provide me with information about Rathke's cyst. My wife has one (pituitary tumour- benign) and we are trying to find out some information about it. Thank you Robert Bernstein <Match_AT_interlog_DOT_com> Toronto, Canada - Thu Oct 9 16:35:30 1997 My husband has acromegaly and we would like to correspond with a family that has a member with this disease. The MRI confirmed that he has a tumor on the pituitary gland a few weeks ago so we just beginners. Looking to compare notes with somebody. Janice Frizzell <jfrizzell_AT_tbr.state.tn.us> Nashville, TN USA - Thu Oct 9 15:58:59 1997 Hi! Is anyone familiar with abnormally elevated levels of "DHEA" and/or "DHEA-S"? If so, please email me with any information. Thanks! Vicki <NoMedDx_AT_aol_DOT_com> USA - Wed Oct 8 20:22:15 1997 Hi! Is anyone familiar with "pituitary hyperplasia"? If so, please email me with any information. Thanks! Vicki <NoMedDx_AT_aol_DOT_com> USA - Wed Oct 8 20:19:59 1997 I am a 46 yr old male who had a PT removed 9/22 via transphenoidal approach. I am currently on Synthroid for my thyroid but have to wait 2 mos. forhealing before testosterone level can be checked. Two wks after the operation I got a migraine (I've been getting them for 7 yrs., unrelated to the PT)Normally my migraines last about an hour because I take Rx for it and it dissipates. I now have the migraine for 4 days w/ no response to the Rx (Duradrin). I would like to hear from other males who had PT removal. Richard Richard <raknap_AT_cyburban_DOT_com> New Rochelle, NY USA - Wed Oct 8 7:58:33 1997 I have had surgery 1982 for a prolactin tumor on my pituary with post op radiation therapy. I know that radiation therapy can cause short term menory loss, but does it lead to any other problems like Alzcheimers? June <handmade_AT_epix_DOT_net> USA - Wed Oct 8 7:05:03 1997 Thank you Sue!!! I did manage to convince them to run some tests and will have the results back in a couple of weeks. Wendy Wendy Barton <longhorn_AT_polarnet_DOT_com> Fairbanks, AK USA - Wed Oct 8 1:23:21 1997 Mrs. Wendy Barton, You gotta love our military med care. All your symptoms sound like a possible pit tumor. Maybe you need to be a little more aggressive..hormone tests can be expensiv, but not as much as a lawsuit for misdiagnoses Tell them I o.k it, since I am a US taxpayer!!! Try to find another dr that will.. What you are experiencing is not normal.! Try to get a visual field test, this test your peripheral vision. Maybe a opthamologist will be more willing to help! Goo-luck sue USA - Mon Oct 6 12:01:51 1997 I am looking for anyone who knows anything about behavioral aggression and rage following surgery in the hypothalamic, pituitary region of the brain. Maureen <jwwright_AT_ncn_DOT_net> IA USA - Sun Oct 5 19:41:30 1997 Looking for any information about Sheehan's Syndrome Wendy Barton <longhorn_AT_polarnet_DOT_com> Fairbanks, AK USA - Fri Oct 3 21:45:11 1997 I am looking to see if anyone has gone through or is currently going through the same problems I am. I am a 25 year old female who hasn't ever had normal cycles. When I was a teenager and first started my cycles would average every other month but since the birth of my son I might have a cycle two to three times per year. I also experience severe hot flashes, headaches, vision problems and recently a strange feeling of being in a drug altered state. This feeling has been in conjunction with the only two cycles I have had this year. My husband is military and I am having a terrible time getting the doctors to run any kind of hormone tests. If anyone can relate to what is happening to me please let me know. longhorn_AT_polarnet_DOT_com Wendy Barton <longhorn_AT_polarnet_DOT_com> Fairbanks, AK USA - Thu Oct 2 1:22:57 1997 I just found out I have an adenoma tumor that was found during MRI. I have not been giving any options other that to have it removed. I would like to find out if there is any other possible treatments. B.Cashley <Cashley_AT_sympatico.ca> Oshawa, ON CANADA - Sun Sep 28 12:47:51 1997 I have an appointment at MGH in October...anyone who has dealt with Dr. Rentoumis and Dr. Katznelson~~please let me know your experience. I have a prolactin secreting tumor~~diagnosed in 1989. It is 6mm~~I was on parlodel 10mg a day for 8 years...now on Permax. Prolactin level is still 104. No periods, headaches, horrible mood swings, no libido....I am from PA and if anyone out there can tell me what to expect from MGH please let me know. After dealing with one endo who knew squat for this long...I am just very nervous! Thanks! Vicki Vicki <ZoCon3_AT_AOL_DOT_com> Johnstown, PA USA - Sat Sep 27 19:42:35 1997 Well----I don't really know if I can benefit from this web site or not. I was hospitalized 5/18/97 through 5/28/97 with a very complicated case. Turned out to be viral meningoencephalitis which began with grand mal seizures. But....now as I am still recovering from stroke-like symptoms (left leg weakness/paralysis), I've also had adrenal insuffiency added to my "complex" case. It seems that my infection was so severe that the pituitary gland was affected which resulted in the adrenal insufficiency. If anyone has personal experience or knowledge of similar situations, I'd be forever grateful for any help! KThrash <kthrash_AT_hotmail_DOT_com> Toomsuba, MS USA - Sat Sep 27 18:06:45 1997 I am looking to buy private health insurance for my 20 yr old son who has a pit tumor. His cobra has run out. Anyone know of a company who will sell us a policy. He has a college fund so he doesnt quailify for state aid and he is on Social Security Disability and cant get Medicaid until he collects 24 checks which is 21 months from now. Please email me if you know anything about insurance.Thanks, Layla Layla <LPerfinski_AT_aol_DOT_com> Las Vegas, USA - Sat Sep 27 15:25:08 1997 Has anybody got any information on Multiple Endocrine Neoplasia Type 2 Jenni Fitt <jenni_AT_netcon_DOT_net.au> Bendigo, Vic Australia - Sat Sep 27 0:26:11 1997 I've really enjoyed this site! I have am being treated with Dostinex for a prolactinoma and it's great! I've had no side effects. My prolactin level is normal and I'm having menstrual periods again! What I'm wondering is if anyone has tried to stop taking Dostinex after 6 months and had a remission. The medicine is so expensive and I read on the insert that a remission is possible. Thanks! shani <showa01_AT_emory.edu> athens, ga USA - Fri Sep 26 22:03:07 1997 My husband (age 48) was diagnosed with acromegaly 6 years ago. He had transsphenoidal surgery with subsequent radiation to shrink the remaining tumor. We do not know if any remain because a follow-up MRI has not been ordered. He has been on Parlodel since 1991, with no side effects. He has just been diagnosed with degenerative bone disease affecting his knees and hip. The doctor also said he has a problem with his lower back (possibly fushion) that is causing nerve damage. He has a lot of pain in his joints and not a lot of flexabilty. We would like to hear from anyone with joint problems, or joint replacement, as the doctor thinks they may have to replace his hip and knees. We are also interested in hearing about any problems with taking Parlodel long term. I am disappointed in the lack of information on the total acromegaly package, not just in hearing about the enlargedment of hands, feet anf face. Yes, he has all of these and is embarrassed at times about it, but I think it is more important to know what to expect in later years, and to know what to keep an eye out for. His endocrinologist seems to be only good for dispensing the pills, but he does little about my husband's over-all condition. Thanks for any info. Donna Rocap <rocapd_AT_algorithms_DOT_com> Dennisville, NJ USA - Fri Sep 26 21:46:20 1997 I previously wrote here explaining my situation. I have a 9mm microadonema in my pituatory gland and have been treated on DOSTINEX for the past 6 months. Gradually my dosage has been rising and for the past 3 months I have been on 2.5 mgs per week. I have had some side effects and for a couple of months my prolactin has remained very high. Recently my husband and I asked the elders of our church and our families to pray for healing as we believed that the medication was not working. The doctors were becoming frustrated as it seemed that I couldn't tolerate any medications available and were beginning to talk about surgery. As a result of our prayer time, my prolactin has gone down to just above normal and I ovulated for the first time in many months. I believe that this is a testomony for what God can do in our lives. I believe that God sent his Son Jesus to die for me and as a result of me accepting his forgiveness I am now his child. Some times bad things happen to good people but I know that God has been there for me in the good and the bad times and I thank him for it. I wrote this because I wanted people to be an encouragement to people and to thank God for what he has done for me. I would be happy to correspond with anyone if they would like to write. Samantha Rickard. Samantha Rickard <davesam_AT_ozemail_DOT_com.au> Melbourne, Victoria Australia - Fri Sep 26 20:18:16 1997 Thank you for offering this site! Kelley Berberich Dallas, TX USA - Fri Sep 26 17:33:54 1997 *** N O T I C E **** N O T I C E **** The PTNA Message Board is newly improved, and is up and running! I highly encourage all who visit here, to also visit the Pituitary Tumor Network Associatation (PTNA) website. You'll find lots of information and lots of very kind and loving and supportive people. Like here, you'll be able to ask questions, share your thoughts, frustrations, fears and successes with people who really "KNOW" what it is like to have a Pituitary disorder. I'd also like to say, this website, is fantastic! Many members of PTNA have chosen MGH and/or its doctors for their care. Sites like this and PTNA, continue to help all of us. Eric Kamm <GemELK_AT_aol_DOT_com> Van Nuys, CA USA - Fri Sep 26 11:47:30 1997 I was diagnosed with acromegaly approximately 9 years ago. Went through surgery and radiation follow-up, and have been taking replacement hormones ever since. Recentluy I have been going through a bout of dental problems, and have had 4 root canals done since May. My tendency is to try to trace everything to the pituitary problem and this might not always be the case, but I would be interested to know if anyone else has experienced something similsr to this? alf simon <asimon_AT_cc.umanitoba.ca> Winnipeg, MB CanadaI - Thu Sep 25 23:11:41 1997 dw of Baton Rouge-Please contact me, I have several items of interest for you. Try Dr. Robert S. Zimmerman , Ochsner Clinic. your area, 842-4000. Carla <kencarla_AT_erols_DOT_com> Alexandria, VA USA - Thu Sep 25 19:25:55 1997 Would be interested in hearing from anyone with hypopituitarism as a result of surgery or radiation. Thanks! Claire <fredafam_AT_aol_DOT_com> Boston, MA USA - Thu Sep 25 16:03:44 1997 There is a pituitary conf. coming up Oct 31 in Houston at MD Anderson Cancer Center. It is a great experience to get info from drs. plus meet a lot of patients from around the world!! More info is available at the PTNA website...their bulletin board is still down, but look under Houston story!! MARY USA - Wed Sep 24 20:03:20 1997 Dear DW in Baton Rouge, Please go to another DR. quickly, not that you are in immediate danger...but your symptoms have been ignored way to long. It sounds like you might have acromegaly?!! Find out what hormones he tested you for.Good Luck! I haven't seen these Drs. , but I heard they work a lot w/ pit tumors. in Texas Dr. Gagel,Dr. Keith Friend. It may even be worth while traveling a little farther to see someone at Mass Generl, UVa, UCLA etc. Keep pushing for proper care!!! Good luck! Chris ca USA - Wed Sep 24 19:58:35 1997 Ronald Barnard Is your address correct? My message was returned. LaCretia Bevel <lbevel_AT_redstone.army.mil> Grant, AL USA - Wed Sep 24 8:47:12 1997 Ronald Barnard Is your address correct? My message was returned. LaCretia Bevel <lbevel_AT_redstone.army.mil> Grant, AL USA - Wed Sep 24 8:47:06 1997 Hi! I am a 33 yr. old female who cannot have periods on her on without hormone replacement therapy. My pituitary gland is unable to signal my ovaries to begin my periods. I was diagnosed with this condition by a OB/GYN when I was 17 yrs. old. I had a skull xray in 1981 which revealed nothing. I've been on hormone replacement therapy since then. I would like to know if there's anyone out there with this problem. K. Branstetter <kbranstetter_AT_sprynet_DOT_com> MO USA - Wed Sep 24 5:10:19 1997 My wife and I have found this guestbook page to be of great help with concerns about my disease. We've also gained a wonderful pen pal from Australia from it. It's been a crazy four weeks for me. I went to my primary care dr. on 8/11 because I was experiencing some tenderness in my right breast. The dr. (not my regular one) told me to put hot compresses on it and left it at that. The following Thursday, I experienced my first symptom of Galactorrhea. I immediately went to see my regular pcp and he did a prolactin level blood test. It came back at 19,000! I made an appointment with an endocrinologist for the following week. At that time, 8/21, my prolactin level registered at 2,492. I had my first MRI on 8/22 and it showed I had a macro-adenoma that was prolactin producing. The tumor was approx. 2 cm in diameter had encased my carotid artery, was pushing against my opticayasma nerves and was next to the cavernous sinus. The dr. prescribed DOSTINEX that evening and I have been on it ever since. I saw a neurosurgeon to talk about surgical options. He took one look at my films and said there would be no way he would successfully remove all the tumor. There was no point in even trying because of the location and size. I've had weekly prolactin levels since 8/14 and I'm happy to say that it's come down significantly every week. I'm now down to 10 and my second MRI last week showed the tumor has shrunk quite a bit. The dr. has never seen a medicine that has worked so quickly and effectively in his 21 years of practice. I have only experienced minor side effects to the medicine such as tiredness and slight dizziness but these are slight compared to what I've read from some of you on Parlodel or other meds. The pharmicist here says this DOSTINEX is the most expensive drug he's had on his shelves!!! Thank goodness for insurance. To all of you reading this, keep the faith. Medical therapy can work and has worked very effectively on me. If you would like to write to my wife and me about your prolactinoma and/or symptoms, we would like to hear from you. I will update my progress soon. Good luck to all of you. Tom Riordan <ibframed_AT_bellatlantic_DOT_net> Beaver Falls, PA USA - Tue Sep 23 20:58:33 1997 My name is Robert Downs, and I was diagnosed with a TSH secreting pituitary tumor in mid August of this year. Wow, what a bummer! Not what I was expecting. I was experiencing elevated blood pressure, heart palpitations, hot flashes and the like. I'm 35 years old, that wasn't supposed to be happening to me. Anyway, My wife and I were working for Department of Defense Schools in Okinawa, so I went to the military doctors there. I got diagnoses from Mitral Valve Prolapse, Stress, and Graves disease just to name a few. Finally, after a good year or so of going back and forth to the doctor, an eagle-eyed Dr. Deitz noticed that not only were my Thyroid levels high, but my TSH (hormone secreted by the pituitary that "turns on/off" thyroid function) levels were high as well. He sent me for an ultrasound of my thyroid. I'd just about had it with these guys. Anyway, I was due to return to the states for vacation, so I made an appointment with an endocrinologist (Dr. Boehm) at the Little Rock Diagnostic Clinic here in Little Rock, Arkansas. Within a week, I had a diagnosis. Of course, it was not what I expected. I mean, it's not every day you're told you have a brain tumor. Within a week I had been referred to a neurosurgeon (Dr. Ron Williams) at St. Vincent's Hospital in Little Rock, and a EENT (Dr. H. Graves Hearnsbarger) and scheduled for a transphenoidal tumor resection. Although not happy about having someone pry about in my head, I went through it on the 15th of this month (September 1997). The surgeon was able to resect about 10mm of a 15mm tumor. I had a small bout, post-operative, with diabetes impetitus for the first 24 hours, but it gradually cleared up. Follow up for my tumor is ongoing, I will go back in at the end of this week and have bloodwork done to see just what's happening in there. Since I'm only 35, my endocrinologist didn't want to consider radiation therapy at this time. Since I still have a small part of my tumor there, they would like to handle it with medication first, and if needed, radiation at some later date. Anyway, that's my story for now. I'll add to it as I get more info. This forum has been such a blessing. I've gotten more info here than from anyone or place else. I wish everyone who is going through this the best of luck. My brother said it this way, "If you're going to have a brain tumor, this is the best one to have." My temporary email before I return to Okinawa is: bdowns_AT_aristotle_DOT_net Robert Downs USA - Mon Sep 22 21:08:19 1997 To The Guest Book: I was diagnosed with acromegaly in 1990. I have had two surgeries and radiation treatments. I would love to be in contact with some other patients. Ronald Barnard <cbarnard_AT_sv.ccsd.wy.us> Gillette, Wy USA - Mon Sep 22 15:52:50 1997 Diagnosed with pituitary micro-adenoma 4 years ago. Doc said it was not secreting any hormones and to forget about it. Life was miserable then, and worse now. Some of my symtoms are 70 lbs weight gain, increase in ring size, shoe size, and height, depression, insomnia, migraines and headaches, no menstrual cycle for the last 2 1/2 years, stroke, hypothyroidism with no relief of symtoms even with thyroid meds., extreme fatigue, hair loss, and severe neck and back pain. Would appreciate the name of a pituitary specialist around the New Orleans, La. to Houston, Tx. area. dw <dwdl_AT_eatel_DOT_com> Baton Rouge, LA USA - Sat Sep 20 23:21:32 1997 ** NOTICE ** Update! The PTNA (Pituitary Tumor Network Association) Website is up and running in its new home. HOWEVER, the message board and chat rooms are still experiencing technical difficulties. PLEASE, come and visit the site, you can still get a lot of information! We hope that the message boards and chat rooms will be up and running real soon. Thanks to all of you for you patience while PTNA strives to improve its services to you. Eric Kamm <GemELK_AT_aol_DOT_com> Van Nuys, CA USA - Fri Sep 19 11:23:17 1997 I am interested in hearing from anyone who has acromegaly and what they have experienced. I have now been forced to give up going to work and currently work at home. My Arthritis has become very serious and I am not doing too well healthwise. Please, is there any one out there with the same complaint as myself? Margaret Thompson <expworks_AT_ozemail_DOT_com.au> Sydney, NSW Australia - Thu Sep 18 5:50:43 1997 This is a fantastic site. I was diagnosed with a Prolactinoma in June of 1997. I am a 36 year old male. I have a tumor 8mm in size and had a prolactin level of 38. I have been on Parlodel for two months and the results have been very good, last level was at 7. Parlodel seems to be helping significantly. The tumor has greatly reduced my testostorne level and has produced the expected side effects. It is "comforting" to know of others with this condition. I thought this was so rare I may not ever find another to hear of their experiences. Tom R. <TRockenbac_AT_aol_DOT_com> Pittsburgh, PA USA - Wed Sep 17 23:59:55 1997 I was wondering if anyone knows of a connection between Cushings Disease (post-surgery) and fibromyalgia. Yvonne <yvonne.sebile_AT_jacobs_DOT_com> Denver, CO USA - Tue Sep 16 9:41:43 1997 **NOTICE** The PTNA Server for Messages and Chat Room features is experiencing difficulty. All other services of PTNA remain active and available. When all is up and running correctly, I will post another notice. Thank you! Eric Eric Kamm <GemELK_AT_AOL_DOT_com> Van Nuys, CA USA - Mon Sep 15 18:06:03 1997 request any information regarding internet newsgroups with focus on childhood craniopharmygioma CHET HOLDEN <foodfun_AT_computek_DOT_net> garland, tx USA - Sun Sep 14 12:39:19 1997 I just had transsphenoidal surgery to remove a macro adenoma on the pituitary gland. This tumor was pressing on the carotid artery. The surgery was done on August 21, 1997. I spent only 5 days in the hospital and the surgeon has not released me to return to work yet. I feel find, however, I am anxious about what happens now. I had no complications, and the doctors haven't mentioned any on the horizon. I was told the tumor was a prolactinoma.. Please share your recent after surgery stories with me. denise <ocse3694_AT_aol_DOT_com> largo, md USA - Sun Sep 14 9:01:05 1997 I just had transsphenoidal surgery to removal a pituitary tumor. The surgery was done on August 21, 1997. I spent only 5 days in the hospital and the surgeon is had not released me to return to work yet. I feel find, however, i am anxious about what happen now. I had not complications, and the doctors haven't mentioned any on the horizon. I was told the tumor was a prolactinoma,. please share your recent after surgery stories with me. denise <ocse3694_AT_aol_DOT_com> largo, md USA - Sun Sep 14 8:28:30 1997 WORLD-TOMBOLA_DOT_com grüßt alle seine Glücks-Gäste. WORLD-TOMBOLA_DOT_com WORLD-TOMBOLA_DOT_com <gb-play_AT_WORLD-TOMBOLA_DOT_com> Germany - Sat Sep 13 20:02:36 1997 Hi Becky & Sue, Thanks for the info on the site. I am concerned over the charging to patients . It is important to me that we are treated fairly. If our doctors cannot provide the info we need, I do not feel we should be charged to access written text. About the cookies. Becky, the are invaders into your site to disrupt your normal flow of surfing. I have found a great deal out about them on other sites. Please contact me at kencarla_AT_erols_DOT_com Carla <kencarla_AT_erols_DOT_com> alex, va USA - Fri Sep 12 20:59:09 1997 I found out last week that I have a pituitary tumor and I was trying to find out more information about it. Lisa Mosgrove USA - Fri Sep 12 13:03:58 1997 PTNA is having a problem with there site...no new postings can be added..so carla your problem may be from this..you can still read the old postings sue USA - Fri Sep 12 12:39:53 1997 Carla, Sorry ...........I access the site at my library in TX. I am unaware of the chat room fee? I went in the room once, but nobody was in there!! As far as the music thing ..try calling them direct!! What did you mean by cookies?/ Did you mean kookies as in patients? explain please I still feel there is a lot of good support there for free!!!!!!!!!!!!! Becky USA - Fri Sep 12 11:05:40 1997 Hi, I am 2 months post op from removal of a pituitary tumor. I have resumed my cycle and my prolactin is down to under 15. I seem to be more and more energetic each day. I only have a few problems now. One is that with the tumor, I gained over 40 pounds. I am a very small-short person and this weight gain has been a terrible strain on me. I have tried everything and nothing seems to work. In my last check up, I was told that my cholesterol was dangerously high. My doctor informed me that I must lose this weight. I am on a very strict diet, I exercise everyday and still I can only lose 1-2 pounds or maintain my present weight. I find it very disturbing to be told to just do more. I feel like I'm doing all I can. My other problem is short term memory loss. I was driving to the store just today and forgot where I was going and turned around and came home, not having any idea where I was going to. I have forgotten to pick up my son from school also. I find this very frightening, especially with small children. Is this normal? Has anyone else experienced any of this? It has been hard enough to be misdiagnosed for all these years with this tumor, then finally I had the surgery and thought it would be all over. I wanted to see if anyone had these problems before I contact my endo. Cathy <cathy_AT_tnproweb_DOT_com> Cumberland City, Tn USA - Fri Sep 12 0:27:20 1997 Becky, I visited the PTNA site, but I was not impressed when I discovered a charge for the chat room. Then I had a musical messge left on my server by PTNA, that I am unale to delete through my select/delete functions! This is in addition to numerous cookies I recieved when I accessed the site!!!!! Carla <kencarla_AT_erols_DOT_com> Alex, VA USA - Wed Sep 10 21:10:17 1997 I often visit the Pituitary Tumor Network Association website http://pituitary_DOT_com I don't recognize a lot of the names here so I assume you don't know about it..Check it out! Great info here to e-mail,but if you can't e-mail you can still respond to patients. check it out!! Becky USA - Wed Sep 10 12:38:16 1997 Attempting to contact Elizabeth McClure Have sent several message, but they have been returned, info for you. Please contact Thanks Carla Dolney <kencarla_AT_erols_DOT_com> Alexandria, VA USA - Mon Sep 8 19:55:12 1997 I have a pituitary tumor which is being treated by medicine. There is a 10% chance it will shrink Mary DeSanto St. Augustine, FL USA - Mon Sep 8 12:53:29 1997 My husband has been suffering from depression and a decreasing libido for about a year. His sex drive and ability to have sex has been constantly decreasing since that time. He has occational headaches but not frequent enough to be considered a symptom. He has no change in his vision. His testosterone level is also dropping from 293 in Ja 97 to 154 in Aug 97. His LH and FSH levels are fine. However, his prolactin level is high. He is being scheduled for a MRI next week to check his pituitary gland. He is also suffering from unilateral gynecomastonoma(a tender lump in his breast area). He has little energy and drive, lacks motivation to work. This is especially bad for him since he is in sales and our income depends solely on production. I wandered onto this site and have read many, many letters which have offered lots of info. Does anyone have some additional advice or "new" treatments that work well. Also, for those who have dealt with similar conditions, how long does it take for treatment to have positive results. My husband has been on antidepressants with little to no relief. Great to think that possibly his depression is related to a treatable tumor! Have had our share of bad medical advice so we welcome any helpful suggestions as to what tests or questions we should ask our doctors. Also, all this began around the time he started taking Prinivil for HTN. Anyone know if there is a connection? Could any of the antidepressants be a culprit also?(Zoloft and then Wellbrutin now Effexor) He's a great husband and father and I'd sure like to see him feel better. A concerned wife. Connie Lohsl <homefacts_AT_annapolis_DOT_net> annapolis, md USA - Sat Sep 6 19:09:51 1997 I have read alot of stories about patients being misdiagnosed for a long time. Has any of you ever filed a malpractice suit? My son is now disabled from being incorrectly diagnosed, he was treated for sinusitis and given surgery, when symtoms got worse they said it was aniety, depression, allergic rinitis, migraine,so on and so on. This went on for 19 months. One doc even said to me "do you know how rare it is to have a brain tumor."His symptoms were headache,blurred vision, nausea, vomiting,severe neck pain, dizziness, feeling tired,losing focus,dropped out of college, lost his job, no longer plays sports. When I read his medical records I am so shocked, I dont know how I let him stay with these 3 doctors for 19 months. When I changed his primary care is when the tumor was discovered, although the new PC tired to take the same route until I stopped him. He has had surgery and there is still tumor around the carotid artery and through the cavernous sinus.This remaining tumor is 12mm.He is on dostinex,4 pills a wk and takes dilaudid for pain, his prolactin is 454 but was as high as 1800, testosrome is 53 andtakes synthroid for his tyroid. Antway I certainly feel that these docs did not do there job. Layla <LPerfinski_AT_aol_DOT_com> USA - Thu Sep 4 12:33:55 1997 Can anyone tell me what could cause an MRI to miss a pituitary tumor? Layla <LPerfinski_AT_aol_DOT_com> Las Vegas, Nv USA - Thu Sep 4 0:27:36 1997 Can anyone tell me why an MRI would miss a pituitary tumor? Layla <LPerfinski_AT_aol_DOT_com> Las Vegas, NV USA - Thu Sep 4 0:24:19 1997 Hello, It has been a pleasure to chat with a number of you. As we all agree, it is nice to know we are not alone. I have found a few more sites that will be of assistance to a few of us. I am also have a TMJ/TMD problem. The following sites may be of some help to you: TMJ The Self Help Program and Pain and the TMJ. I also found Syndromes. A listing of numerous medical terms with a great deal of info attached. Just go into your favorite site i.e. Yahoo and type any of the words you wish to find. Carla Carla D <kencarla_AT_erols_DOT_com> Alex, VA USA - Tue Sep 2 18:40:22 1997 Hello.. I'm hoping some of the pituitary patients here can share their experiences with the validity of the MRI. My family seems to have familial acromegaly. My brother was 7'2" tall and when he died at the age of 28, they had found several microadenoma's on his pituitary gland. My son also has overgrown and has acromegaly. He's 14 now but last year he had an MRI which showed an 8mm microadenoma on the LEFT side of his pituitary gland. 3 months later it disappeared. Now it's a year later and although his TSH levels are still normal, they've declined the last 4 times tested. Another MRI was done (at a different location) and they said he has a microadenoma 5 mm in height on the RIGHT side of his pituitary gland. They also mentioned that his infundibulum is slightly deviated toward the left etc.. Did anyone here have anything similar or was told they had a small adenoma and the surgery show a large one or visa versa? Any disappearing adenoma's to reappear elswhere? By the way, I had premature ovarian failure and so I had an MRI done. Seems I also have a 3 mm nonenhancing "incidental" Rathke's cleft cyst. I can't find any answers to my questions throughout the web and so I was hoping by asking people personally for their experiences. Please reply..Thank you!! Chris Chris <Crissee_AT_ezy_DOT_net> De USA - Sun Aug 31 21:37:39 1997 This is a good time to let you know again of the Pituitary Tumor List/Bulletin Board that Duggan Foster has created (See Guestbook Aug. 6, 1997). We can discuss these topics back and forth a little more on the list. To subscribe, send an e-mail to LISTSERV_AT_MAELSTROM.STJOHNS.EDU In the body of the e-mail, type subscribe PITUITRY Note that it is not PITUITARY. (It is restricted to 8 letters or less.) The list is growing. It can be a great encouragement to send/receive postings from people with similar health concerns. Lorraine Fritch <wsf_AT_pe_DOT_net> Hemet, CA USA - Sat Aug 30 2:13:27 1997 RE; Cushing's Disease Pituitary gland Can Reglan be used for vomiting? E.Collins <collinsc_AT_highlander.cbnet.ns.ca> Sydney, N.S. Canada - Thu Aug 28 23:42:42 1997 Margaret Thompson in Sydney Australia Please post your E-mail address .I think a wrong address is listed.Judy Judy Lubera <lubera_AT_transport_DOT_com> Portland, OR USA - Thu Aug 28 22:55:05 1997 Hi. Just an update. I stopped taking Parlodel in Dec 96 after being on it for about 8 years. So far all is well. At my peak, my prolactin was 115 or so. Recently completed SF Marathon.....Hopefully this "remission" is long term !! :-) Mike Pihlman <mikep_AT_its-dvc_DOT_com> Tracy, CA USA - Thu Aug 28 22:20:47 1997 Hello Everyone! This is my second posting on this website and I thank God for it. I have a prolactenoma, (Prolactin Secreting Macroadenoma), which initially presented with headaches. The headaches are gone for the most part, but occasionally they return. Here's the big part that I'm writing about this time **** ---> Take charge of your health!!!!! Don't be lulled into a false sense of security! If you are going to have surgery make sure that you get at a minimum a second opinion. Here goes... My tumor again is a prolactinoma. That means the hormone prolactin is being secreted in excess. This obviously prohibits the normal function of certain other endocrine systems, ie Thyroid, Testosterone, etc. Now, the first surgeon was itching to do surgery, and I said no, just because of the following. My endocrinologist who is well read and has a web site for diabetes, and who is constantly educating himself, suggested trying to shrink the tumor away, or down as much as possible, and then if surgery is still needed, it will be easier because the tumor is much smaller and less evasive. Now, that makes sense! Two MRI's later and just one month later, the neurosurgeon is still advocating surgery. I still said "NO"! At that point I sought a "second opinion". This second neurosurgeon was extremely knowledgeble and didn't make any statements that seemed to contradict themselves like the first neurosurgeon did. He even had a model of a brain, along with a human skull, to show me what was going on. He explained to me that you do not operate on a prolactinoma!!!!! "What"??? Dr. XXXX recommended surgery. Now had I not taken action and got a second opinion, I would be in trouble. He further explained that prolactenomas can not be fully removed! They tend to come back most of the time! He even said that he went to a symposium dealing with nothing but pituitary tumors, and he stood up in front of a room full of doctors and asked, "Do you operate on Prolactenomas?", and the answer was an overwhelming "NO"! So now you see why I am writing this long letter. I hope that this will benefit someone. There are complications associated with any surgery, but this isn't knee surgery, it's "Brain Surgery", very serious surgery. There are all kinds of potential complications involved with that! Not to say that pituitary surgery is unsuccessful as a whole, but just why put yourself through that if you have to is my point! If you don't have a choice, well then it's just an issue of having faith that God will guide the surgeon's hand. Apologies for the long posting, but this had to be said! Sal Crocker <sal.crocker_AT_MCI2000_DOT_com> Memphis, TN USA - Thu Aug 28 12:02:09 1997 I HAD A PITUITARY TUMOR REMOVED IN 1986. PROLACTIN LEVEL HAS STAYED ELEVATED (MAY THIS YEAR IT WAS 60). HAVE HAD TIMES OF GALACTAREA OCCURING,MRI SHOWED NO SIGNS OF REOCCURING TUMOR IN 1995. HAVE TAKEN PARLODEL ON AND OFF--DO NOT TOLERATE IT VERY WELL. RECENTLY I HAVE HAD SOME SYSTEMS TO SHOW BACK UP. I WAS ABLE TO HAVE A BABY IN 1991. I AM CURRENTLY HAVING GALACTAREA, FATIGUE, FLUID RETENTION, NAUSEA, SPARATIC PERIODS,. I HAD BLOOD WORK DONE YESTERDAY AND WILL HAVE A VISUAL FIELD TEST DONE IN A FEW WEEKS. GLAD I FOUND THIS SITE...NEVER KNEW THAT SO MANY PEOPLE HAD THIS SAME PROBLEM. KIM BAIRD <KMJBAIRD_AT_AOL_DOT_com> HADDOCK, GA USA - Wed Aug 27 19:20:43 1997 My warmest greeting to my fellow patients. I need some help! My name is Shirley, I'm a 24 year old female diagnosed in Aug. 1996 with what was thought to be a 3 mm microprolactinoma. I decided to wait for a year and follow my condition with blood tests because I am still menstruating and have had only galactorrea as a side effect. My second MRI indicated that the lesion has grown to 5mm and is now believed to be a Rathke's Cleft Cyst because of the way it looks on the MRI. My issue: One neurosurgeon told me to have surgery soon because these cysts can suddenly exponentially grow and would cause me more problems, while a second neurosurgeon told me to wait another year until it grows a bit more and then have the surgery. The cyst is embedded in the gland (from what I understand) and if it grows it'll move closer to the edge of the gland and may be easier to remove. Question 1. Any fellow Rathke's out there? Please email if yes! Question 2. Do these cysts have the tendancy to exponentially grow? Question 3: Is it dangerous to wait and not have the surgery? Thanks everyone and take of yourselves. Love Shirley Shirley Brockhill <shirley.brockhill_AT_alphanet_DOT_net> Toronto, ON Canada - Wed Aug 27 10:38:48 1997 Hi, what a wonderful site. I am a 50 y.o. female, who had surgery for a transphenoidal, prolactin secreting pituitary adenoma in 1978, which had grown beyond the confines of the sella turcica. I have been on 10mg of Parlodel since that surgery. For so many years, I have wondered how many others have been dealing with similar pituitary situations, and thanks to the internet, my wondering days are over. I am interested in the new medication CV-205-502, and if it has similar properties as Parlodel. After reading all of the letters in the guestbook, I can only contribute the following: It is such a comfort to know there are others coping in a similar situation. I like to think we are a hearty group of people, who have inner strength, drive and motivation to continue without feeling our medical situation rules our lives. We are in control and should be proud. For those who have just found out about your pituitary tumor, all I can say is have faith in, never let your feelings take control, and there is no reason to give up. To give you an idea of where I was and where I am today, nearly 20 years after my operation, I married eight years ago. I have completed schooling in a new field and am working as a buyer for the government. My self esteem and self pride could not be higher. I feel I have accomplished so much over the years in spite of the headaches at times and the uncertainity in the early stages. I do have so much to be thankful for and I wish the same for each of you. Bless you all. Carla <kencarla_AT_erols_DOT_com> alexandria, VA USA - Mon Aug 25 22:24:17 1997 Hi, what a wonderful site. I am a 50 y.o. female, who had surgery for a transphenoidal, prolactin secreting pituitary adenoma in 1978, which had grown beyond the confines of the sella turcica. I have been on 10mg of Parlodel since that surgery. For so many years, I have wondered how many others have been dealing with similar pituitary situations, and thanks to the internet, my wondering days are over. I am interested in the new medication CV-205-502, and if it has similar properties as Parlodel. After reading all of the letters in the guestbook, I can only contribute the following: It is such a comfort to know there are others coping in a similar situation. I like to think we are a hearty group of people, who have inner strength, drive and motivation to continue without feeling our medical situation rules our lives. We are in control and should be proud. For those who have just found out about your pituitary tumor, all I can say is have faith in, never let your feelings take control, and there is no reason to give up. To give you an idea of where I was and where I am today, nearly 20 years after my operation, I married eight years ago. I have completed schooling in a new field and am working as a buyer for the government. My self esteem and self pride could not be higher. I feel I have accomplished so much over the years in spite of the headaches at times and the uncertainity in the early stages. I do have so much to be thankful for and I wish the same for each of you. Bless you all. Carla <kencarla_AT_erols_DOT_com> alexandria, VA USA - Mon Aug 25 22:22:33 1997 Hi, what a wonderful site. I am a 50 y.o. female, who had surgery for a transphenoidal, prolactin secreting pituitary adenoma in 1978, which had grown beyond the confines of the sella turcica. I have been on 10mg of Parlodel since that surgery. For so many years, I have wondered how many others have been dealing with similar pituitary situations, and thanks to the internet, my wondering days are over. I am interested in the new medication CV-205-502, and if it has similar properties as Parlodel. After reading all of the letters in the guestbook, I can only contribute the following: It is such a comfort to know there are others coping in a similar situation. I like to think we are a hearty group of people, who have inner strength, drive and motivation to continue without feeling our medical situation rules our lives. We are in control and should be proud. For those who have just found out about your pituitary tumor, all I can say is have faith in, never let your feelings take control, and there is no reason to give up. To give you an idea of where I was and where I am today, nearly 20 years after my operation, I married eight years ago. I have completed schooling in a new field and am working as a buyer for the government. My self esteem and self pride could not be higher. I feel I have accomplished so much over the years in spite of the headaches at times and the uncertainity in the early stages. I do have so much to be thankful for and I wish the same for each of you. Bless you all. Carla <kencarla_AT_erols_DOT_com> alexandria, VA USA - Mon Aug 25 22:19:48 1997 Hi, what a wonderful site. I am a 50 y.o. female, who had surgery for a transphenoidal, prolactin secreting pituitary adenoma in 1978, which had grown beyond the confines of the sella turcica. I have been on 10mg of Parlodel since that surgery. For so many years, I have wondered how many others have been dealing with similar pituitary situations, and thanks to the internet, my wondering days are over. I am interested in the new medication CV-205-502, and if it has similar properties as Parlodel. After reading all of the letters in the guestbook, I can only contribute the following: It is such a comfort to know there are others coping in a similar situation. I like to think we are a hearty group of people, who have inner strength, drive and motivation to continue without feeling our medical situation rules our lives. We are in control and should be proud. For those who have just found out about your pituitary tumor, all I can say is have faith in, never let your feelings take control, and there is no reason to give up. To give you an idea of where I was and where I am today, nearly 20 years after my operation, I married eight years ago. I have completed schooling in a new field and am working as a buyer for the government. My self esteem and self pride could not be higher. I feel I have accomplished so much over the years in spite of the headaches at times and the uncertainity in the early stages. I do have so much to be thankful for and I wish the same for each of you. Bless you all. Carla <kencarla_AT_erols_DOT_com> alexandria, VA USA - Mon Aug 25 22:17:27 1997 I am an 18 years old who has been diagnosed with a Macro adenoma with the dimension 1.5cm by 1.6cm by 1.4cm. I was advised that the situation is urgent and required immediate surgery, thus exactly one year ago, I had the tumor removed through the transphenoidal surgery. Prior of the surgery, my prolactin level is somewhere near the 350 mark. Unfortunately, the surgeon was not able to remove the whole of the tumor. And as expected, the tumor recurred. In less than half a year, I went through a second surgery which utilizes a new technology called gamma knife. But even after this second surgery, my prolactin level, though dropped to the 150 mark, is still considered high. At the same time, Depression hits along with memory and concentration loss. Right now, I am taking a prolactin-suppressing medication known as Norprolac. I am not sure it is used in the U.S. But I am told my my endocrinologist that it is by far the safest and most effective drug in the Hong Kong market. I have read quite alot about a drug called Dostinex and the miracles it has done for so many. It is very frustrating that we do not have this drug in Hong Kong. I would truly appreciate if anyone would like to share their experience concerning post-surgery depression, memory/concentration loss, persistent weight gain (I gained 30 lbs. after the surgery) and Norprolac. If you are familiar with the U.S. college admission process, please do also advise me on whether or not my illness will lower my chance of being accepted. Many thanks for your kindness. Please correspond at the following e-mail address: vlui_AT_netvigator_DOT_com Vickie Lui <vlui_AT_netvigator_DOT_com> Hong Kong - Sun Aug 24 12:30:34 1997 I wish Icould help all the people I read about tonight. I have had a pituitary tumor for thepast 10 years. I have tried bromocriptine, and other medications from around the world. Nothing has helped to normalize my prolactin levels. I had surgery about 7 years ago, but unfortunately the tumor had extended to the cavernous sinus, and the remainder of the tumor was inoperable. My husband and I wanted children, but I haven't had a period in over 11 years. Anyone who wants to know more about the surgery, please e-mail me. I have tried to do a lot of research regarding these tumors, but as you all seem to know, there is not a lot out there. For anyone who has had problems with their memory, I can relate to that. I didn't know if that was because of my high prolactin levels. Please contact me if you want to chat some more. Nancy Moore <paco_AT_hay_DOT_net> Zurich, oon Canada - Sat Aug 23 23:18:15 1997 I am 27 years old, I was told in 1990 I had a pituitary adenoma, my medication is Parlodel. I was wondering if you have any reading materials or can recommened anything I might be able to find in the internet or library to study more about my medical condition. I recently had a child and when I went back for my MRI the tumor was not seen on the screen, I know it can reoccur, that is why I would like to read as much as possible. Thank you. Katrina Sandoval <manny_AT_newmex_DOT_com> Taos, NNnm USA - Fri Aug 22 16:12:18 1997 I'm very thankful that Parlodel is on the market. It enabled me to conceive my two beautiful children, after a long history of infertility. At one time, I was taking really high doses (22.5 mg a day)with little or no side effects (Maybe I'm just drug resistant). I'd be happy to correspond with other women who are facing similar infer- tility/amenorrhea problems. Lorraine Fritch <wsf_AT_pe_DOT_net> Hemet, CA USA - Fri Aug 22 3:25:37 1997 FSH pituitary tumor.Does anyone have a FSH pituitary tumor?What where your symptoms?I'm wondering if that could be my problem.At 39 yr old I stopped having periods,lost my libido,had vaginal dryness and atrophy,my FSH was 144.I've leaked breastmilk for 21 yr..My eyes are not equally dilated.I'm very thirsty at night and have a hard time sleeping because of it.Last Nov. I developed severe pain in my left ear and face which my doctor diagnoised as TMJ, and then I developed numbness in my left arm and hand,and pain and numbness in my left foot.I am active,fit and of normal weight and I go to my doctor frequently however she thinks I'm just a winey menopausal woman. Does anyone else think I should get a second opinion? judy lubera <lubera_AT_transport_DOT_com> USA - Thu Aug 21 2:05:52 1997 To those who needs it, Parlodel can be a great help. However, because of its side effects, the blessings could be somewhat mixed. In a psychotherapy situation, could some of Parlodel's more ill-natured side effects make a patient more susceptible to False Memory Syndrome? Please click the homepage URL and read the story. Feedback links & topic forum are provided. Your comments would be highly appreciated. Chris <cinclus_AT_hotmail_DOT_com> - Tue Aug 19 16:37:04 1997 I have a prolatin secreting macroadenoma, and was diagnosed with it in May of this year 1997. I am three months down the road and feeling better than ever. I was never in fear because of my faith in God. Please ref. Mark 11:23 and Ephesians 3:19&20. I am currently on permax and synthroid. I was having headaches and a low sex drive. My prolactin level was 10,000 and after only two weeks of permax, it dropped to 640. In addition, I haven't had a headache in two months, as opposed to everyday prior to my diagnosis and treatment. My sex drive is also coming back. I believe in God's word and his healing abilities! Remember that your faith is your key to healing and I'm a witness. Sal Crocker <sal.crocker_AT_MCI2000_DOT_com> Memphis, TN USA - Mon Aug 18 17:21:30 1997 looking for anyone who has had thier pituitary gland removed.. Judy <JAHinson_AT_aol_DOT_com> Houston , Tx USA - Mon Aug 18 13:51:31 1997 recurring non-functioning tumor, diagnosed six years ago L Wilmoth <lwilmoth_AT_aol_DOT_com> USA - Sun Aug 17 19:57:32 1997 My name is Samantha Rickard, I am from Melbourne in Australia I am 25 years old. I was diagonosed with a prolactinoma 9mm in diameter 18 months ago and have changed medications 3 times now. For the past 3 months I have been on dostinex. I was very excited to find this home page as it was encouraging to realise that there are many others out there with the same condition as me. I am curious to know if others have suffered flu like symptoms on dostinex. I feel that since being on the drug my immunity is lower as I have caught a lot of flu or cold bugs this year. My husband and I would love to start a family soon but are obviously prohibited by my condition. I would love to keep in touch with others with my condition as support for each other. Please write me at davesam_AT_ozemail_DOT_com.au if you are interested in corresponding. Thanks. Samantha Rickard <davesam_AT_ozemail_DOT_com.au> Melbourne, Vict Australia. - Sun Aug 17 17:28:02 1997 My name is John and I live in Perth Australia, I was diagnosed with Hyperprolactinema cause by a micronoma in my pituitary, with a prolactin level 700. My specialist built me up to 7.5 mg per day of Parlodel, my level is now down to 70 I still suffer from tiredness but am feeling a lot better, by the way it had reduced my testosterone level to 7.1 but they say it could take a few months to get back to nomal, having Jesus in my live has made all the difference. John Chadwick <chadwick_AT_net1.nw_DOT_com.au> Leda, Australia - Sun Aug 17 0:21:16 1997 I had a transphenoidal removal of the pituitary in August 1988 after I was diagnosed as having acromegaly. Since then, I have been fortunate to suppress the GH level with parlodel. Recently, however, the GH level has elevated. More vigorous efforts appear to be in the offing. Jim Corbett <Corbett_AT_wtp_DOT_net> Billings, MT USA - Sat Aug 16 23:39:10 1997 Have myriad of symptoms since early 1997. Some relate to hypothyroidism, some relate to rheumatism, some relate to fibromyalgia. Searching for more info on pituitary/thyriod disorders which may point Dr. and I in right direction!! cmarenic_AT_freenet.calgary.ab.ca Calgary, Alberta CANADA!! - Sat Aug 16 21:36:37 1997 On the 2nd of July the neurosurgeon removed (most of) my prolactinoma. After the surgery my pituitary gland didn't work well. I have to take medicines to replace my hormones. Can anyone tell me about a life with these medicines? Next autumn I have to go to the hospital for radiation therapy. I am looking for someone who can tell me about this radiation therapy. Does it make you sick or does it change your body? I hope to receive your reaction soon. Thanks. Eva Eising Eva Eising <eaeising_AT_worldonline.nl> Assen, The Netherlands - Fri Aug 15 9:03:21 1997 I had a craniopharyngioma and would like to hear from others who had the same thing. bwhite_AT_innova_DOT_net USA - Fri Aug 15 6:06:08 1997 I have a rare disease known as Sheehan Sydrome. The medical term is call post partum pitiutary necrosis. I was dignosed with this disease in Aug. 1993. After the delivery of my daughter I started have symtons of loss of hair loss, loss of apitite, extremely tired, no engery etc. I found out that my disease was the onset of high prolactin level. In most cases Sheehan Syndrome is caused by hemorrhage. If anyone has this disease or something simular please e-mail me. I submitted a month ago but my e-mail address has changed. Thank you. Joan <cbocker_AT_icubed_DOT_com> PA USA - Thu Aug 14 23:23:21 1997 I would like to hear from anyone who knows anything about the Pituititary clinic in Virginia and also one in California. LaCretia <lbevel_AT_redstone.army.mil> AL USA - Thu Aug 14 14:17:51 1997 margaret thompson, please check your address. I have not been able to send anything to you. LaCretia <lbevel_AT_redstone.army.mil> grant, al USA - Thu Aug 14 14:12:04 1997 margaret thompson, please check your address. I have not been able to send anything to you. LaCretia <lbevel_AT_redstone.army.mil> grant, al USA - Thu Aug 14 14:11:57 1997 I am interested in hearing from anyone who has acromegaly and what they have experienced. margaret thompson <expwrks_AT_com.au> sydney, nsw australia - Thu Aug 14 8:49:53 1997 To everyone who is on Parlodel and is waiting for their tumor to go away, IT WON'T. The way it was explained to me was that it will increase the dopamine, this is known to decease prolactin levels. So by taking parlodel you are suppressing the production of prolactin not making the tumor disappear. In my case, I have had prolactin levels ranging from 113-6 and my tumor is always 4mm in size. P Haupt Boca Raton, FL USA - Thu Aug 14 8:29:23 1997 To everyone who is on Parlodel and is waiting for their tumor to go away, IT WON'T. The way it was explained to me was that it will increase the dopamine, this is known to decease prolactin levels. So by taking parlodel you are suppressing the production of prolactin not making the tumor disappear. In my case, I have had prolactin levels ranging from 113-6 and my tumor is always 4mm in size. P Haupt Boca Raton, FL USA - Thu Aug 14 8:27:48 1997 Is anyone out there with pituitary gland tumor and elevated prolactin levels having problems with short term memory loss and concentration? If so, what have you done to sharpen up the mind again? It is very frusterating when you can't remember from one moment to the next. Write to me (if you can remember). Kristiina <brauch_AT_ixnetcom_DOT_com> Renton, WA USA - Wed Aug 13 16:06:52 1997 How can I get a copy of Pituitary Patient Resource Guide and be put on a mailing list for your newsletter? Thanks a bunch!!! Lisa Boatwright <ofa_AT_snowhill_DOT_com> Ozark, AL USA - Mon Aug 11 16:38:10 1997 Hi, Everyone! Does anyone have the names of doctors and/or researchers who are the current "experts" in Cushing's Disease? Any names of experts in "intermittent Cushing's" (sometimes called "periodic" or "cyclical")? Do you know of any Cushing's research or protocols going on right now? Thanks for any information or referrals. Please email to NoMedDx_AT_aol_DOT_com Vicki <NoMedDx_AT_aol_DOT_com> USA - Mon Aug 11 0:29:17 1997 I was dioagnosed with Agromegaley in 96 and operated for a tumour in August 96. Since then I have gradually declined and now feel 200 times worse than before. I have enlarged feet and hands plus nose and jaw. Is there any one out there with similar problems? I find it now almost impossible to walk because of joint pains. Will I improve? Do I have to take medicine or can I take alternative medicines to get better? Margaret Thompson <Expworks:_AT_ozemail com.au> Sydney, NSW Australia - Sun Aug 10 3:38:59 1997 I was dioagnosed with Agromegaley in 96 and operated for a tumour in August 96. Since then I have gradually declined and now feel 200 times worse than before. I have enlarged feet and hands plus nose and jaw. Is there any one out there with similar problems? I find it now almost impossible to walk because of joint pains. Will I improve? Do I have to take medicine or can I take alternative medicines to get better? Margaret Thompson <Expworks_AT_ozemail com.au> Sydney, NSW Australia - Sun Aug 10 3:38:33 1997 I was dioagnosed with Agromegaley in 96 and operated for a tumour in August 96. Since then I have gradually declined and now feel 200 times worse than before. I have enlarged feet and hands plus nose and jaw. Is there any one out there with similar problems? I find it now almost impossible to walk because of joint pains. Will I improve? Do I have to take medicine or can I take alternative medicines to get better? Margaret Thompson <Expworks_AT_ozemail com.au> Sydney, NSW Australia - Sun Aug 10 3:35:00 1997 I have Agromegaly and have had the removal of a tumour in August 1996 but now feel 200 times worse than before. I have enlarged hands and feet and am now experiencing terrible pain in my joints.Walking is difficult and I feel terrible. Is there any one who has similar problems, and is it possible to feel normal again? Margaret Thompson <Expworks> Sydney, NSW Australia - Sun Aug 10 3:12:39 1997 I was told in August of 1996 that I have "Empty Sella Syndrome" From what I am told this is where the Pituitary Gland is to small or not there. My Neuro doesn't seem real concerned about it. I have headaches every day, some visual problems and galactorreah and I bruise very easy. My prolactin level was 24. My MRI was normal so I was put on Parlodel which brought my level to 10. I was told that a tumor can go hand and hand with Empty Sella. If anyone has any information about Empty Sella please write to me. Thanks a bunch. God bless! Lisa B. Lisa Boatwright <ofa_AT_snowhill_DOT_com> Ozark, AAL USA - Thu Aug 7 13:13:16 1997 I am looking for information on what a Rathke's cleft cyst is. Elizabeth A. McClure <Elizabeth McClure_AT_GSA.GA> Washington, , DC USA - Thu Aug 7 12:10:31 1997 I am looking for information on what a Rathke's cleft cyst is Elizabeth A. McClure <Elizabeth McClure_AT_GSA.GA> Washington, , DC USA - Thu Aug 7 12:09:21 1997 I am looking for information on what a Rathke's cleft cyst is Elizabeth A. McClure <Elizabeth McClure_AT_GSA.GA> Washington, , DC USA - Thu Aug 7 12:09:13 1997 I had transphenoidal surgery in Feb. It was diagnosed as Cushings. I was on Prednisone from Feb. to June. I'm also diabetic and the Prednisone did a real job on my diabetes. I'd hoped that after getting off the Pred. that things would improve, but I've since developed terrible joint pain. Although I've never had arthritis or anything like it, I can just imagine that this is how it feels. I am awaiting results of an arthritis profile but won't know for about another week. I am writing to see if there's anyone out there who has had this problem and what has been done about it. I've received e-mail from someone who was put on Fosamax and was wondering if there's anyone else who is on it and if there are any side effects. Your comments are most appreciated. Nancy Morin <nmmorin_AT_aol_DOT_com> Hooksett, NH USA - Wed Aug 6 20:37:22 1997 I am interested in anything new in the subject of diabetes insipidus. Nancy Peterson <Aloha37_AT_aol_DOT_com> Lihue, HI USA - Wed Aug 6 9:19:15 1997 I am interested in anything new in the subject of diabetes insipidus. Nancy Peterson <Aloha37_AT_aol_DOT_com> Lihue, HI USA - Wed Aug 6 9:19:08 1997 Hello, my name is Duggan Foster, I myself a pituitary patient, have put together a list serve for patients like ourselves to communicate. When I first created the list, I had it for yougth (between the ages of 10-21), but I never really had a good responce. So I have put a great deal of thinking into this, and I am now making the list serve avaliable to all patients, of all ages. I am currently putting together a web page of the list. If you are interested in joining, send and e-mail to: LISTSERV_AT_MAELSTROM.STJOHNS.EDU with the body of the message as: subscribe PITUITRY Please join, and help me get the word out to everyone by letting them know the information. Thanks, if you get a chance, visit my web page! Duggan Foster <duggan_AT_triax_DOT_com> Portland, OR USA - Wed Aug 6 1:33:35 1997 I'm a 47 year old female with a pituatary tumor for the past 20 years. Took Parlodel when first diagnosed in 1980, or so, couldn't tolerate the side effects. Have just "lived with the condition". It's been really great to discover this site and know that there are "others" out there who suffer from the same problems. Thought I was just crazy for the longest time. My checkup this year revealed that my tumor is growing and my Dr. is suggesting surgery. Have a ton of questions! Anyone who has been through the surgery? After reading some of the comments in the guestbook, I'm wondering if the newer medications are easier to tolerate. Judy Streiber <jstreibe_AT_bellsouth_DOT_net> USA - Tue Aug 5 20:41:42 1997 I just found this great guestbook for people with pituitary adenoma. I guess I never imagined there were so many out there, and you all have the same questions as I do. Why do I always have to feel awful? I am on parlodel for six years now and my prolactin count has come down from the 60s to the teens, however it has recently gone up to 34 after no change in medicine. Has this ever happened to anyone else? I see that we all get the same treatment, no one seems to really know that much about this diagnosis. It isn't fun feeling the way I feel every day, and it is hard for people to understand the way I feel, does anyone else feel depressed as well as the headaches and achy face all the time? Hope to hear from someone soon. Thanks. ann <svec_AT_mhv_DOT_net> USA - Tue Aug 5 9:49:47 1997 Hi! My name is Christy and I am 26 years old. I have had a high prolactin level for eight years now. I have had several MRI's but they have all come back normal. I have been on parlodel for this whole time (2.5mg). I recently went to 5mg a day due to my prolactin level being higher than normal. In February I took myself of birth control pills due to my husband and I wanted to have a baby. Since, I have not had a period and this concerns me. What should I do? Please let me know if anyone has information on getting pregnant with this disorder. I have really enjoyed all the entries in this website. I will be praying for each person with this sitution. God Bless! Christy <putt_AT_galstar_DOT_com> Grove, ok USA - Tue Aug 5 0:52:36 1997 I am a 43 year old female and I have had an elevated prolactin count for the past 12 years, since the birth of my second child. Despite taking varying dosages of Parlodel over the last 4 years, my count remains above 300, and a recent MRI has shown growth of the pituitary tumor. I am now awaiting transsphenoidal surgery at the end of August, and would be interested in hearing from anyone who has had this surgery. I am especially curious as to the recovery time and what to expect after the surgery. Does it take a long time to get back to normal? Do you still need daily medications? I was interested to reead that others have had problems controlling weight gain, as this has been a persistent problem for me as well. I also take premarin and provera because of the lack of estrogen in my system and the history of osteoporosis in my family. Thank you in advance for any insights you might give me. I am very nervous about the surgery. Chris Sullivan <jbcs_AT_epix_DOT_net> Towanda, Pa USA - Sun Aug 3 12:08:11 1997 It is nice to know that I am not the only person with a pituitary tumor. Thank you for having a support center. Lisa Magnifico <FMagnifico_AT_aol_DOT_com> Stamford, CT USA - Sun Aug 3 10:27:04 1997 Hi,I have posted my details before but I need some more info I am a 56 year old female-I suffer from a recurring,non- functioning adenoma. I had it first removed in 1990 and then again in 1994 plus after the 2nd-radio therapy. After the 2nd op things seem to be "falling apart" in my body (apart from old age) I now have to take thyroxene and steroids for the rest of my life so it seems. Its the steroids that seem to be making all the problems-bad stomach upsets,irratable bowel syndrome and now they tell me they caused me to get diabetes mellitus (I already have diabetes insipitus from the first op) Has anybody out there found all these problems when on long term use of steroids???? (I've been on them for 3years now its quite frightening to think of what's going to happen in say 10 years) Do contact me through the e-mail with your comments. BRENDA HOWARD <brenda.howard_AT_virgin_DOT_net> nr.Liverpool, England - Sat Aug 2 7:09:05 1997 It is hard to explain symptoms when you had a Pit Tumor for 15 years or longer, my fatigue,weakness,burning eyes, lack of sex drive, mood swings and many other problems seem to be a way of life I just took it for granted this is the way every body feels. When I started to read all these commits by so many other people I realize that HEY this is the tumor doing all this or at least a good part of it. My tumor is rather large and as of now the 5.0mg of parlodel I take daily is keeping my tumor in check but it isn’t shrinking. I belong to an HMO and I believe that they are just interested in treating and not healing the problem. So after reading many commits on this message board I opt to have surgery. Dennis <dklev_AT_prodigy_DOT_net> WI USA - Thu Jul 31 19:40:50 1997 I'm one year post surgery on a 9mm non secreting tumor, and doing pretty well. There is something that I would like to raise, because I think it affects a lot of us. Though I have had a lot of improvement since surgery and testosterone replacement, some deficits remain. I'm learning that many others are left with them too. Problems such as continuing short term memory loss; co-ordination and balance loss; loss of sensation in fingers; confusion; mood disturbances. I'm wondering how many people have these problems remaining after removal or other successful treatment. I have a thought on why they exist and persist. What if the stress of the tumor and its associated harms cause a self perpetuating cycle of hormonal disturbances, mood changes, poor performance at home and work, etc, which all create more stress, and then worsen the hormonal imbalances, etc? It could be the tumor starts a cycle that then feeds itself even after the tumor is gone? Anyone think this might be true of them? Maybe the cycle of stress-hormones-disability even preceded the tumor. Maybe the cycle of stress-hormonal imbalance also creates a disturbance in the body's immunity system, which sets us up for the tumor? I am a trial attorney, and it may be that my lifestyle has been poisening me for many years. I have just finished a book called BRAIN LONGEVITY by Dr. Dharma Khalsa, an American anaesthesiologist who went on to specialize in memory deficits and how to cure them with diet, changes in lifestyle, nutrition, meditation, and pharmacological aids. I've started following his regimen for only two weeks, and it's working already. My balance became normal immediately, and the memory is much better already, and I think still improving. I would recommend this book to anyone who experiences the symptoms I described, whether they had a tumor or not. Dr. Khalsa's thesis is that excessive and unremitting stress causes an overload of the hormone cortisol, which DESTROYS BRAIN CELLS. It also interferes with retrieval of existing memories (sound familiar?), as well as interfering with the creation of new long term memories. In short, I am beginning to believe that the tumor did not so much cause all these bizarre and diverse problems, so much as they and the tumor shared a common cause. This might also explain why the tumors come back for some people. Since I'm speculating, let me also speculate on this: Since Cortisol also interferes with the neurotransmitters such as acetycholine, virtually any human process dependent on nerve impulses can be affected: thought, emotion, co-ordination, weight and fitness maintenance, energy level, sense of touch, reasoning powers, disease resistance, sleep. It would explain a lot, wouldn't it? Please read Khalsa's book. Contrary to what you may have been taught, brain cell losses are not irremedial. They can grow back and become more effective. Good luck. Brian R. Dinday BRIAN R. DINDAY <DINDAY_AT_pacbell_DOT_net> San Francisco, CA USA - Wed Jul 30 16:14:45 1997 I was just diagnosed with a small 2x3mm rathke's cleft cyst inside my pituitary gland. I'm know lots about pituitary adenomas since it tends to run in my family but I don't know much and can't find much information about the Rathke's cleft cyst on the web except for the tragic cases.. can anyone here enlighten me on the subject??? Thanks, Chris Chris <Crissee777_AT_aol_DOT_com> Delmar, De USA - Tue Jul 29 22:22:16 1997 I have pituitary problems, elevated prolactin, symptoms of low thyroid, and infertility. I can't find a doctor here who knows how to help me or even cares about my condition. It's very distressing. Angela Seres Lanning <mtoutlaw_AT_initco_DOT_net> Great Falls, MT USA - Tue Jul 29 20:33:14 1997 I'd like to share experience with DOSTINEX. I started taking Parlodel in January, with a prolactin level of 400, and by March after building up very slowly to 3.75, my prolactin had gone to 70. I kept at it until May, but if I missed a few days, I got violently dizzy when I resumed the pills. (you'd think I'd learn.) My doctor switched me to Dostinex, .5 mg. twice a week, and in 4 weeks, my prolactin went to 9! THE BAD NEWS: I started to get very dizzy during week 5--couldn't function well at all. SOO--back to parlodel, and after a week of no Dostinex, the dizziness is finally subsiding. According to literature on Dostinex, it has a long half life. My theory--it was building up in my system over the four-week period, and is now taking more than a week to wear off. Has anyone any experience--professional or otherwise--on this? Susan <susan0753_AT_aol_DOT_com> USA - Tue Jul 29 12:11:40 1997 Hello, I'm the one who wanted any info. on Parlodel and pregnancy. Would appreciate any info. Gave wrong email address originally. Thanks!! Deb <TDKP_AT_softdisk_DOT_com> La. USA - Mon Jul 28 23:06:02 1997 Recently dx. with prolactinoma approx. 4mm. Prolactin 28, not too high. Taking Parlodel 2.5mg one day, no S/E , thank goodness!!. Anyone out there with any infor. on pregnancy with parlodel and prolactinomas? Please email with any information, I will really appreciated anything. Thanks! deb <tdkp_AT_softdisc_DOT_com> La. USA - Mon Jul 28 22:29:10 1997 I'm not alone. It's amazing how much better you feel when you realize other people aaer experiencing the same fears and frustrations that you are. I was diagnosed with a prolactinoma (5mm) September 24, 1996. That day changed my life. It made me realize where my priorities should be. I've been taking 5 mg of Parlodel every day since December 1. My prolactin levels are now within normal limits. In Sept., I will have the chance to find out how successful treatment has been. I'm praying for good news. I'm open to suggestions and comments regarding this disorder. Let me know what you think. Cindy Cindy A. Smith <Cindy.Smith_AT_enmu.edu> Artesia, NM USA - Sun Jul 27 21:07:56 1997 Hi! I'm a 35 year old female who would like to correspond with others who have "cyclical, intermittent, or periodic Cushing's". Any information regarding symptoms, research, treatment options, prognosis, and/or names of specialists in this particular area would be greatly appreciated! :) Vicki <NoMedDx_AT_aol_DOT_com> USA - Sat Jul 26 18:25:25 1997 Hi! I'm a 35 year old female who would like to correspond with others who have "cyclical, intermittent, or periodic Cushing's". Any information, research, treatment options, prognosis, and/or names of specialists in this particular area would be greatly appreciated! :) Vicki <NoMedDx_AT_aol_DOT_com> USA - Sat Jul 26 16:13:40 1997 I am placing a new entry because my e-mail address was incorrect. Please note the change. Thank you Joan <pentII266_AT_aol_DOT_com> PA USA - Fri Jul 25 10:17:28 1997 I am a 33yr female that was dignosed with Sheehan Syndrome. Another name is postpartum pituitary nercosis. I was dignosed in Aug of 1993. I would like to chat with anyone who has this disease or something simular. It is a rare disease and this is the closes I can find in chating with someome. Thank you Joan <Shelby_AT_aol_DOT_com> PA USA - Thu Jul 24 18:58:58 1997 I am a 33 year old person who has Sheehan Sydrome. Another name is postpartum pituitary necrosis. I was dignosed in Aug of 1993. If anyone has this disease or something very simular I would like to chat with them. This is the closes I can get to finding information and/or chating with someone with my disease. Thank you Joan <Shelby_AT_aol_DOT_com> PA USA - Thu Jul 24 18:47:37 1997 I am a 33 year old person who has Sheehan Sydrome. Another name is postpartum pituitary necrosis. I was dignosed in Aug of 1993. If anyone has this disease or something very simular I would like to chat with them. This is the closes I can get to finding information and/or chating with someone with my disease. Thank you Joan <Shelby_AT_aol_DOT_com> PA USA - Thu Jul 24 18:42:39 1997 I am taking .5 Dostinex 2x a week. I was on Parlodel 25mg since April. I gave birth 12/14/97 to a beautiful girl who is healthy. I got pregnant on the Parlodel last year. Can anyone tell me if they get tired from the Dostinex or if they gained weight from this condition? Thank you. Suzanne <birdbool_AT_stealth_DOT_net> Seaford, NY USA - Thu Jul 24 17:10:30 1997 I am a 20 year old female that have been diagnosed with having a prolactin tumor. Right know my doctor have prescribed for me to take parlodel . I am feeling worse since I've been taking this medication. I'm amazed to know that others are going through the same disorder. Jaduanda Hodge <JH11271 _AT_ mtsu.edu> Murfreesboro, TN USA - Wed Jul 23 19:16:05 1997 I am a 20 year old female that have been diagnosed with having a prolactin tumor. Right know my doctor have prescribed for me to take parlodel . I am feeling worse since I've been taking this medications. Jaduanda Hodge <JH11271 _AT_ mtsu.edu> Murfreesboro, TN USA - Wed Jul 23 19:06:13 1997 I am a 25y/o female who has been diagnosed with a microadnoma for approx 5 years and has been taking parlodel (different levels) for the same amount of time. I felt very alone with my condition until most recently when I browsed the web looking for information on parlodel's long term effects. I am so throlled to have found this sight and have e-mailed many people who have posted notes in the recently. I am curious about ways to not only treat pituitary disorders, but cure them. I have become very interested in natural healing (nothing too weird) since I now lack some faith in many MD's and western medicine because so many doc's seem to give scant information by merely treating, not healing. Unfortunately, I had to return to parlodel after trying it without it for 6 months because my periods stopped and my prolactin level is up in the 90's again. I have a pretty good grasp on my own health, I eat well, exercise, see my doc's. take my med's on time and daily ans so on. Now, I am interested in a few other areas that I am seeking guidance in. 1. Why are MD's (gyn's and endo's) not insync with their information? I was on birth control pills with one doc, then switched to another who said I should have NEVER been on demulin 2. Why is there not any public support or interest in our condition? Lots of women and me are afflicted with this serious ailment. 3. I am interested in planning a family and I can't get any straight answers about my chances. 4. Most importantly, has any research been done to determine WHY people have these medical conditions? Any clues on body types, metabolisms, heredity, habits??? We ought to continue to help ourselves, but more over learn all we can as to who, what, where, why, when and more so that generations to come do not have to tolerate the pain, discomfort, fright, misunderstandings, etc. Please be in touch with me. I am very interested in making our world a healthier place to live. I am curious in d Katherine Lindsey <KKLINDSEY_AT_AOL_DOT_com> Jacksonville, FL USA - Wed Jul 23 13:15:48 1997 My tumour is 15x17x9mm which is quite large,I was told I've proberly had it for 15 years.I am on 5mg Parladel daily for 2 years no side affects my prolactins were very high but now are normal. I just had a MRI and it showed there was no growth or no shrinkage. I ask my doctor if I should increase meds he said no as long as my prolactins are normal everything should stay the same. This dose'nt sound right to me. Any feedback? Dennis Kleven <dklev_AT_prodigy_DOT_net> Mequon, WI USA - Wed Jul 23 10:55:27 1997 I have been on dostinex going on 4 weeks now and the strangest thing has happened. I was on 1/2 pill for the first 2 weeks (2x a week = 1 full pill) and went in and got my blood level checked out and it dropped from 98 to 44. The second 2 weeks I was on a full pill 2x a week and got my blood tested and my prolactin level only dropped from 44 to 42!!! What happened? Now my doctor has me on 1 1/2 pills 2x a week and I am really dragging. I have noticed lately that my memory has been very, very bad. I forget things very easily and am discouraged because I let others down. Any support out there would be much appreciated. Thanx ahead of time. Kristiina <brauch_AT_ixnetcom_DOT_com> Renton, WA USA - Wed Jul 23 1:13:20 1997 I am a 25 year old woman with a pituitary tumor. I am sorry that others have the same condition but i am releived to now know I am not alone... Katherine Lindsey <KKLindsey_AT_aol_DOT_com> Jacksonville, FL USA - Tue Jul 22 16:16:09 1997 Had my pituitary removed 3 months ago -- am seeking anyone who had the same procedure.....lots of questions of course...Please get in touch with me. Judy Hinson <JAHinson_AT_aol_DOT_com> Houston, Tx USA - Mon Jul 21 22:44:13 1997 I had transphenoidal surgery at MGH on June 27 for removal of an 8mm cystic prolactinoma. The surgery was considered a success, as my prolactin dropped immediately from the 40s and 50s to 7 and 8. I'd like to hear from other pit surgery patients about their recoveries following surgery. Specifically, my questions are: 1) How long after surgery did you start feeling good again? I'm 3-1/2 weeks post-op and am still very tired. 2) How long does it take for the hormones to normalize? 3) How long does it take before various pre-surgery symptoms/ailments dissipate? Although, some of the symptoms seem to be better already, I am still experiencing ringing ears, some dizziness, clouded thinking, fatigue, numbness/coordination problems in hands, and periods of slightly slurred speech. Maybe I'm just being impatient, but I'm eager to feel like "my old self" again soon. Please e-mail me at mary_AT_zjs_DOT_com. Thanks... P.S. Surgery at MGH was wonderful. Great docs and tremendous care! I'm happy to share my experiences. Mary Kay <mary_AT_zjs_DOT_com> Milwaukee, WI USA - Mon Jul 21 12:27:10 1997 I need information please. I have a sister who is 17y/o who is undecided as to have surgery or not. She needs more information. Thank You Kay Lehman <klehman_AT_datasys_DOT_net> Valdosta, GA USA - Sun Jul 20 20:45:51 1997 My brother and son both are acromegalic. My brother had gigantism and acromegaly and throughout his childhood and was tested over and over again at a reputable Hospital and they couldn't find anything, his final diagnosis was hereditary overgrowth. My son was born and a very big baby like his uncle with many of the same facial features and body habitus. I knew immediatly at his birth that he was just like his uncle. Over the years my son was tested at the same Hospital as well and nothing was found.. no tumors, high normal HGH and IGF-1 levels and many years of chromosomal testing which turned out to be a pericentric inversion on his 11th chromosome but not in the same area as the Beckwith wiedeman gene. My brother was 7'2" tall and in 1989 he was admitted to the hospital for pneumonia. He wasn't in intesive care because his pneumonia wasn't critical. I visited him the night before and we went to the smoking lounge and had a cigarette.. he walked back to his bed and the nurse came in and gave him morphine IV for his pain. He started falling asleep while I was there so I left. The next morning we got a call that he had a pulse at 2 am and none at 3am. In my figuring over the years he died because he had obstructive sleep apnea (severe) and with the morphine couldn't take the next breath. While we were waiting for his autopsy report, my son had a follow up app't at genetics and at that time they gave the diagnosis of hereditary overgrowth, "just like his uncle". During that same visit, they happened to get a report from my bro's autopsy which showed he had multiple pituitary microadenoma's, some basophilic and some eosinphilic. My son is now 14 years old and last year he had an MRI which showed a tumor 8 mm in diameter, the neurosurgeon had planned on removing it. He had another MRI 3 months later and it disappeared!! He does get total hormonal testing done every six months. my son is 6'3" tall, 220 lbs and very big boned..he wear's a 14 EEEE size shoe. I follow his hormone levels closely, esp since I work for his primary care physician and see the lab results before the endo does. He does have a mild cortisol deficiancy and needs hydrocortisone for periods of stress.. fever, broken bones.. etc.. I'm hoping to get more information or any information from people or physicians who have had or seen similar cases.. any information would be helpful. Chris <Crissee777_AT_aol_DOT_com> Delmar, DE USA - Sat Jul 19 8:07:17 1997 My brother and son both are acromegalic. My brother had gigantism and acromegaly and throughout his childhood and was tested over and over again at a reputable Hospital and they couldn't find anything, his final diagnosis was hereditary overgrowth. My son was born and a very big baby like his uncle with many of the same facial features and body habitus. I knew immediatly at his birth that he was just like his uncle. Over the years my son was tested at the same Hospital as well and nothing was found.. no tumors, high normal HGH and IGF-1 levels and many years of chromosomal testing which turned out to be a pericentric inversion on his 11th chromosome but not in the same area as the Beckwith wiedeman gene. My brother was 7'2" tall and in 1989 he was admitted to the hospital for pneumonia. He wasn't in intesive care because his pneumonia wasn't critical. I visited him the night before and we went to the smoking lounge and had a cigarette.. he walked back to his bed and the nurse came in and gave him morphine IV for his pain. He started falling asleep while I was there so I left. The next morning we got a call that he had a pulse at 2 am and none at 3am. In my figuring over the years he died because he had obstructive sleep apnea (severe) and with the morphine couldn't take the next breath. While we were waiting for his autopsy report, my son had a follow up app't at genetics and at that time they gave the diagnosis of hereditary overgrowth, "just like his uncle". During that same visit, they happened to get a report from my bro's autopsy which showed he had multiple pituitary microadenoma's, some basophilic and some eosinphilic. My son is now 14 years old and last year he had an MRI which showed a tumor 8 mm in diameter, the neurosurgeon had planned on removing it. He had another MRI 3 months later and it disappeared!! He does get total hormonal testing done every six months. my son is 6'3" tall, 220 lbs and very big boned..he wear's a 14 EEEE size shoe. I follow his hormone levels closely, esp since I work for his primary care physician and see the lab results before the endo does. He does have a mild cortisol deficiancy and needs hydrocortisone for periods of stress.. fever, broken bones.. etc.. I'm hoping to get more information or any information from people or physicians who have had or seen similar cases.. any information would be helpful. Chris <Crissee777_AT_aol_DOT_com> Delmar, DE USA - Sat Jul 19 8:06:31 1997 Lady on this site who has just written about gaining weight and tumor - there is not a return email address to respnd / reply to? My tumor was rated at greater than 2000 - Macroadenoma and never have I been advised that this affects weight gain / loss. That is with a thyroid tumor, I believe. I have had a Pituitary Tumor for 10 years and am not overweight, but feel about 20 piunds heavier than I would like. Again was never given this as an excuse. Ddi you doctor tell you this? With a prolactin level at 35 that is not far from normal. Normal I have been told is 0-25. Take your Parlodel and wait a while. It should down. Take it from someone that knows you are better off to take pills for a while than to have brain surgery. It is MUCH TOO Painful and there are side affects of surgery, scars, loss of feeling in your upper lip, etc.... As far as getting pregnant I donot believe you can while you have elevated prolactin, but take your pills and be patient. best of Luck Stacy Stacy Hudson <davewave_AT_bellsouth_DOT_net> Stockbridge, GA USA - Fri Jul 18 23:04:21 1997 I was diagnosed with a macro in 1987. Went to GYN for 4 years with no menstrual cycles. Was told that I was just a late starter. Still at age 19 and no menstrual cycles went for 2nd opinion. After 1 blood test I was diagnosed as having a brain tumor on my pituitary the size of a half dollar. Prolactin registered greater than 2000 on scale. Had brain surgery at age 19, 1987 to remove. Did well, but even after 10 years, no menstrual cycles (maybe 6 tops) and still rather high prolactin around 100-200. Seeking advice of fertility doctors and on prescription of Parlodel. However, I do ot do well on Parlodel. Active and outgoing, but this medicine even at 1/2 tablet at bed each night makes me sick to my stomach and weak. Would like to speak with anyone who has information on new drug "Pergolide". Can not ovulate and be able to have children without normal Prolactin. Now age 30 and desperately seeking better or faster ways to lower Prolaction without the side affects of Parlodel. Stacy Hudson <davewave_AT_bellsouth_DOT_net> Stockbridge, GA USA - Fri Jul 18 22:23:43 1997 this site is very informative and helpful I have a pituitary microadenoma linda riggle <bucki50_AT_aol_DOT_com> mission, tx USA - Wed Jul 16 3:05:11 1997 Tried to e-mail you Debra with some answers to your questions but it was sent back. Do you have your correct e-mail address written in? Angel Neidl <gottaeat_AT_dataplusnet_DOT_com> Manitowoc, Wisconsin USA - Mon Jul 14 21:56:42 1997 I have been diagnosed with a 6 mm Prolactin tumor. The doctor wants to put me on Dostinex. I have been informed this tumor will never go away, just shrink, and I will have to take medicine for the rest of my life. Any feedback would be appreciated. Anyone taking Dostinex, what side effects will I experience? Debra Kowalewicz <Debra.Kowalewicz_AT_ey_DOT_com> Stone Mountain, GA USA - Mon Jul 14 15:42:31 1997 I have diagnosed with a 6 mm Prolactin tumor. The doctor wants to put me on Dostinex. I have been informed this tumor will never go away, just shrink, and I will have to take medicine for the rest of my life. Any feedback would be appreciated. Anyone taking Dostinex, what side effects will I experience? Debra Kowalewicz <Debra.Kowalewicz_AT_ey_DOT_com> Stone Mountain, GA USA - Mon Jul 14 15:39:25 1997 My wife has been having occasional blurred vision for months, an MRI recently revealed possible presence of what the doctor described as Microadenoma at the pituitary gland. What is Microadenoma & its medical significances, treatments etc. etc........? SengToh Siow <soulblade7_AT_hotmail_DOT_com> Malaysia - Sun Jul 13 6:40:59 1997 My email address in Jkoishor_AT_webtv_DOT_net not _DOT_com. Please email me any responses to my story up above to Jkoishor_AT_wevtv_DOT_net. Thanks to all of you... Janice Koishor <Jkoishor_AT_webtv_DOT_net> Fremont, Ca USA - Sun Jul 13 5:16:24 1997 Hi Everyone on this site: I was just diagnosed 2 weeks ago July 1st with a Prolactin Tumor. My Prolactin level is only 35 which is low from some of the stories I have read tonight. I would of never known I had this tumor except for the fact I wanted to have another child and have tried for 6 years with no success. So I went to my obgyn to find out why and thu the Prolactin blood testing and the MRI I found out I have a 5mm tumor. The doctor has put me on parlodel 2.5 mg a day and then on 8-15 I will go to 5 g a day. My question is to anyone that will answer me back... Has anyone ever got pregnant after they started taking this medication and how did the pregancy go? I have gained weight in the past 3 years and no matter how much I diet I cannot get it off. My doctor says this is due to this stupid tumor. Has anyone out there been told by there doctor that this prolactin tumor can make them gain weight and if so how do you get it off? I diet and excersise regulary with no major weight loss. I do not want to go thru surgury because I am scared to death of surgury. So to make a long story short I would like to hear from anyone that has this kind of tumor and would like to give me some advice on what to expect about this PARLODEL medication in the long run. Has anyone had this tumor shrunk completly before? I also would like to hear from anyone that was able to get this tumor to go away but for some reason it came back. The last thing I would like to know does anyone know HOW or WHY we were cursed with this Prolactin Tumor. My doctor cannot tell me how or why I got this tumor and he cannot tell me how to prevent getting another one once this one is gone. ANY INSIGHT INTO MY QUESTIONS AND FEARS WOULD BE VERY VERY MUCH APPRECIATED FROM ALL OF YOU.... THANKS FOR THIS SITE OF SUPPORT>....... Janice Koishor <Jkoishor_AT_webtv_DOT_com> Fremont, CA USA - Sun Jul 13 4:52:17 1997 It appears that a lot of people are unaware of the pituitary tumor network association... check out their web site http://www.pituitary_DOT_com Patients can respond directly to your questions.. jan 1998 CAMP PITUI is coming this is a camp for children with pituitary tumors. good luck to all. pit patient USA - Thu Jul 10 19:52:44 1997 I have had many replies to my query of July 4. Although I answered each and everyone separately, this is my way of saying thanks to the “makers” of this site which is truly a GIFT. Genevieve Koppens Santorum <gsantorum_AT_fmh.utl.pt> Oeiras, Portugal - Thu Jul 10 11:01:54 1997 I am happy to write that I had surgery for my prolactinoma on the 30th day of June and was at home by the 4th of July. My prolactin is down to 2.9. Besides a few headaches due to the surgery and the stitches under my top lip, I feel better than I have in over a year. Interested in talking to anyone who has had the surgery on ways to finally lose this weight. Would also be glad to answer any questions on the surgery. Cathy <cathy_AT_tnproweb_DOT_com> Dover, Tn USA - Wed Jul 9 22:30:16 1997 I was diagnosed with a prolactinoma approximately 15 years ago. Unfortunately, at the advice of my family physician, I did not receive any treatment for the tumor until recently. On my own, I decided to see an endo last month and started dostinex for tx of the tumor, fosamax for tx of osteoporosis, and birth control pills for estrogen replacement therapy. I'm not sure if it's "all iny my head" so to speak, but I think I feel better already....except for the weight gain.l I'm not sure which of the meds causes weight gain, but I'm feeling pretty big and fat and can barely fit into my clothes. I'm glad I stumbled onto this site and I'd love to chat with anyone who's interested. Becky Hubbard <bhubb_AT_lcsc.edu> Lewiston, ID USA - Wed Jul 9 15:08:56 1997 A wonderful site with lots of comprehensive information on the topic provided. Very helpful for those who are seeking to know more about the disease. Keep up the good work! Vickie Lui <vlui_AT_netvigator_DOT_com> Tai Tam, Hong Kong - Tue Jul 8 13:19:30 1997 The site is very informative. Unfortunately, it did give answers regarding where a Romanian colleague should turn who has a tumor at hypophysis and has lost his sight. Vid Beldavs <VidvudsB_AT_aol_DOT_com> Bloomington, IN USA - Sat Jul 5 17:44:11 1997 As a mother (profession: nurse) of an acromegalic son who has had surgery (macroadenoma) four years ago and has been on octreotide since, I would like to know if there is a chat group, forum, site, etc. where one can exchange views and hear how other people cope. Thanks beforehand for any information you may have for me. Genevieve Koppens Santorum <gsantorum_AT_fmh.utl.pt> Oeiras, Portugal - Fri Jul 4 10:25:47 1997 Hi, Thanks, these pages are really interesting. I only have a small microadenoma (don't know what size) and have been off and on bromocriptine for two years (30yo). I tolerate it pretty well by the sounds of it except for my intestines (and maybe some mood swings initially?) but dislike taking it all the same. Am seriously considering giving it up and just living with the high-ish prolactin levels (10 with 2.5 tablet a day was 880 originally but now stabilises at 200-after 8 months off tablet w/o specialists knowledge). Was wondering if anyone has gone off their drugs without having anything happen to adenoma size? After reading these pages I went back on the tablets. Jenn <jenny.xskerratt_AT_utas.edu.au> HOBART, TAS AUSTRALIA - Fri Jul 4 3:24:31 1997 I was diagnosed with a pituitary prolactinoma at age 17 and am now 35. I have undergone traditional pharmacological intervention with the use of Parlodel but was very unhappy with both the side effects and my body's accomodation to the dosage resulting in continually having to increase the dosage to obtain lasting results. I have been off the medication for approximately 3.5 yrs and have been pleased with my body's ability to somewhat regulate mentrual cycles. However, my prolactin level remains elevated around 120-140. My interests are whether there are other alternatives to Parlodel and whether or not chronic depression is commonly associated with elevated Prolactin levels. Any information would be appreciated. Thank you. Elisa Kelley <Elisa-Bolt-Kelley_AT_juno_DOT_com> Alexandria, Va USA - Thu Jul 3 14:48:10 1997 Would like to hear from anyone taking Human Growth Hormone after pituitary surgery or other causes for deficiency. I am beginning an Eli Lilly "drug study" in which the drug company will supposedly pay for the hormone for the duration of the study, which can be as long as five years. Replacing this hormone, which my body does not produce, is supposed to make me feel much better, increase my strength, decrease bad cholesterol and increase good cholesterol levels, decrease the body fat levels and increase lean muscle mass, etc. etc. I'd like to hear from anyone who has been on this hormone. Has it helped you? I will have to inject myself daily with the hormone, probably for the rest of my life, and I'd like to know if it will be worth it! I have panyhypopituitarism due to a pituitary tumor that caused Cushings Syndrome. My adrenal glands were removed to cure the Cushings, and the pituitary tumor then atrophied on its own, without surgery. But it had grown so large before this happened that it basically destroyed my pituitary gland, hence the panhypopituitarism. Elizabeth Brown <alpineflwr_AT_aol_DOT_com> Wildwood, MO USA - Wed Jul 2 22:07:56 1997 have been taking parlodel off and on for six years. anybody have information on the long-term ill effects, if any, of this medication? rudy elder <cliveco_AT_aol_DOT_com> USA - Wed Jul 2 19:14:52 1997 Thank you to all who wrote back to me!!! I am glad to say that the Bromo has decided to agree with my body and now I can wake up everyday feeling somewhat normal (physically); but mentally it is amazing!!! I feel so incredible! I am so much happier now, and I don't always feel as though the world is out to get me. If anybody else has had these incredible turn-around periods in their life after taking Bromo, please let me know. THANKS ALOT!!! Sommer <richkid_AT_axionet_DOT_com> Coquitlam, BC Canada - Tue Jul 1 23:35:08 1997 Update on my nephew: He is now on octreotide therapy. He is getting 3 shots daily, 1 every 8 hours. So far no change. He goes to UCLA Medical Center July 17th. Maybe they can help. Anyone on this treatment, please e-mail me and let me know your results. Thanks! P.S. This page has been very helpful! Tammy <rhinos_AT_righetti.sbceo.k12.ca.us> Santa Maria, CA USA - Tue Jul 1 13:49:31 1997 33 year old female. Prolactin level has been as high as 151. Got prolactin level down with parlodel first and permax later. For me, not as many side effects with permax. Was told I would never have children in 1989. Proud to announce I have two beautiful daughters born 12/91 and 7/94. I never knew of this site. THANKS!! It is nice to know that others out there have the same hormonal problems. Kathy Johnson <JohnsonVB_AT_AOL_DOT_com> Bloomington, IL USA - Mon Jun 30 22:50:07 1997 I'm a 28 year ol female with, as of Jan 96 7mm prolactinoma. With questions of all who have had surgery for Microadenomas or any prolactinomas at all for that matter. I am waiting for some responses back from my doctors (whom I don't even have at the moment) Long story.. But a word of advice..DO NOT Cancel YOUR CURRENT INSURANCE!! So any one have any commnts regarding this?? Again looking for those already gone thru surgery with any kind of pituitary tumors ..excluding acromagelic. THNKS BIGTIME!! EMY Emy <pmoore_AT_means_DOT_net_DOT_com> Maplewood, MMN USA - Sat Jun 28 23:40:44 1997 I have been on Cabergoline (Dostinex) for two weeks now and my prolactin level has dropped from 98 to 44 with only 2 full pills (1/2 of one every three days). I have stopped gaining weight and am feeling like I am on the road back to normalcy. This sure is an expensive way to be "normal" though. If anyone has any questions about the med or needs any support or encouragement, please let me know. I have been living in fear but am fighting back. I may not win this battle but I will win this war! I'm rooting for you! Kristiina R. <brauch_AT_ixnetcom_DOT_com> wa USA - Sat Jun 28 3:21:05 1997 I wrote the wrong E-mail address, hope this one works! Would like to hear from anyone w/prolactinoma Michelle <Michelle_MacCallum_AT_USCCMAIL.uscc.bms_DOT_com> Plainsboro, NJ USA - Fri Jun 27 13:11:49 1997 I wrote the wrong E-mail address, hope this one works! Would like to hear from anyone w/prolactinoma Michelle <Michelle_MacCallum_AT_USCCMAIL.uscc.bms_DOT_com> Plainsboro, NJ USA - Fri Jun 27 13:11:41 1997 I'm glad there is a site for this! Michelle <mmaccall_AT_usccmail.uscc.bms_DOT_com> Plainsboro, NJ USA - Fri Jun 27 12:06:01 1997 I was amazed to stumble upon this page when looking for information about prolactinomas. I am a 22 year old diagnosed in December 1996. At the time my obgyn was very vague but said I needed an MRI of my brain done immediately because of the unusual levels of prolactin in my blood. So in the mean time I was scared to death. I had no idea what this could mean, so I called her back. She told me that the symptoms I had been experiencing were symptoms that may be some kind of cancer. Great, I am thinking, one semester away from graduating from college and I have cancer, and its in my brain!! They did the tests only to discover that I have a microadenoma (6mm). I was not sure what that was, but relieved that it wasn't cancer. I have been on parlodel since January, but my prolactin levels have only gone down slightly. I was curious how long it takes for the levels to get within a normal range. I am sure many of you are on this drug and could tell me the experiences you have had. I am considering going to an endocrinologist for treatment, instead of my ob/gyn, since she has only had one other patient with this problem. What do you think of the dostinex? Jennifer <LIFESCAPES_AT_msn_DOT_com> Murfreesboro, TN USA - Thu Jun 26 15:33:26 1997 I have a prolactin secreting pituitary tumor and have been taking Dostinex for about 1 month. My endocrinologist has told me that this medication is very new and there is not much information available. I am interested in references to research sites as well as personal experiences with the drug. Specifically I am interested in the long term side effects that anyone has experienced. Also, my husband and I would like to have a child and am interested in knowing if anyone has been able to get pregnant after taking Dostinex or while taking it. Thank you. Tammi <pault_AT_gw.lbcc.cc.or.us> USA - Thu Jun 26 0:01:28 1997 E-mail me Bonnie Stewart <jwstewart_AT_dyssey.on.ca> Blyth, ont Canada - Wed Jun 25 11:07:26 1997 My husband had a non-secreting pituitary tumor removed in February of this year. We have been informed that there is residual tumor and that in all likelyhood the tumor will grow back. He is scheduled for a followup MRI in September or October 1997. Our plan is to monitor any changes and follow up with radiation therapy. My questions: 1) Does anyone know how fast these tumors grow after surgery; 2) Has anyone had radiation therapy and if so what can we expect? Terri Longmire <tlongmire_AT_hcfa.gov> Denver, CO USA - Wed Jun 25 9:27:20 1997 I have been on Parlodel for 5 years now and things have been fairly normal until last year. When diagnosed, my prolactin level was around 220, with Parlodel it averages about 80 with every visit to my endrocronologist. My doctor said he is not concerned with the level since I am still getting my periods. Well that stopped and I still am on 15mg of Parlodel a day. Now, my husband and I want to conceive and I am questioning the approach my doctor has taken. Has any one out there been able to conceive while on Parlodel? I understood surgery would kill any chances I'd have at getting pregnant. Any else hear that? I'd appreciate hearing from anyone in similar circumstances. Karen <jkh21796_AT_aol_DOT_com> Minneapolis, MMMMMN USA - Tue Jun 24 23:54:04 1997 I WAS DIAGNOSED WITH A PITUTARY TUMOR 3MM DUE TO PROLACTIN LEVEL. THE ENDROCRONOLOGIST DIDN'T SEE ME UNTIL 3 MONTHS AFTER THE DIAGNOSIS. IN THE MEANTIME I WAS SCARED AND STILL AM BUT MY FEARS HAVE FADED A BIT. I GUESS I AM GETTING USE TO THE IDEA OF HAVING A TUMOR IN MY BRAIN. THE DR. SAID IT MIGHT EVEN GO AWAY WITH THE BROMOCRIPTINE. I SURE HOPE THE SIDE EFFECTS GO AWAY SOON. I WOULD LIKE TO HEAR FROM ANYONE WHO HAS ANY ADVISE ON HOW TO DEAL WITH THIS. THANK YOU ALMA <NIKKO_AT_AOL_DOT_com> GLENDALE, CA USA - Mon Jun 23 23:36:07 1997 I was really glad to find this area, I thought maybe someone would have enough compassion to to share some information with me. Well it seems like everyone one who posts here is just like the medical professionals I have been seeing, who don't care if you have a clear understanding pf the problems you have. I have e-mailed many people who haven't even bothered to return my messages. I am totally in the dark as to what I need to do, I don't even know what kind of doctor to see. I have been told by doctors referral service in Dallas that there aren't any doctors in this area that can help me. Now the people on the support group don't seem to want to help either. I guess because 8 months ago I had no hormone problems itr makes mine not important. I'm sorry to have intruded in this private guestbook for people who have pit tumors. I will just have to suffer mine in private and alone, thanks to all of you on-line buddies. beverly WELCH <TXLANEY_AT_AOL_DOT_com> KAUFMAN, TX USA - Sun Jun 22 7:39:48 1997 Hi, I have been on Parlodel for 4 years because of a prolactin secreting macroadenoma with success in reducing the size. At 28 years old I am wondering about fertility problems and would appreciate views on the subject from similar persons. I was thrilled to find this site, especially since I live only 40 minutes from MGH and have never used their clinic. I will be asking my endocrinologist about this on our next visit. Maureen Kittredge <MoeKit_AT_aol_DOT_com> Lancaster, MA USA - Sat Jun 21 20:57:43 1997 MY HUSBAND WAS DIAGNOSED WITH CUSHING SYNDROME AND HAD A PITUTARY TUMOR REMOVED IN OCT '95. HE HAS SINCE BEEN DIAGNOSE W/ A RECURRENT TUMOR AND IS SCHEDULED FOR PITUITARY REMOVAL ON JUNE 26TH. 1997 IF ANYONE HAS ANY INFORMATION AS TO WHAT HE CAN EXPECT OR WHAT YOUR EXPERIANCE IS IT WOULD BE VERY HELPFUL. THANKS, KELLY SMITH KELLY SMITH <NICK_SMITH_AT_MSN_DOT_com> SALEM, , OR USA - Sat Jun 21 15:50:52 1997 Was diagnosed with macroadenoma in 8/96, was told not to worry am on no meds,but field of vision tests show some deterioration as well as sinus problems. Have had numerous illness and allergies for some time now, currently suffering from bronchitis and on 3rd antibiotic but hasn't cleared yet. I was referred to neurologist for problem who now refuses to see me, says tumor is not growing, even tho eyesight is deteriorating. I guess this is just something I will have to live with or die with beverly welch <TXLANEY_AT_AOL_DOT_com> Kaufman, TX USA - Sat Jun 21 12:42:00 1997 This will be my second entry to the guestbook. After my first entry I got great responses from people who helped end some of my fears about surgery. I have taken Parlodel and Dostinex both for my prolactinoma. Neither worked on my and I experienced terrible side effects from both and gained even more weight. I just found out from my neuro today that my surgery is scheduled for June 30th at Baptist Hospital in Nashville, Tn. My neuro made me feel very comfortable with the whole procedure, but I can't help from being a little scared. I honestly can't wait to get back to myself again. Any one with any comments or helpful advice. please feel free to write. Cathy <cathy_AT_tnproweb_DOT_com> Dover, Tn USA - Thu Jun 19 13:54:18 1997 I am a 17 year-old girl diagnosed with a pituitary prolactinoma in march of 1997. I was on the Bromocryptine for about a month and now i am going for surgery on July 21 1997. I am very afraid. I get severe headaches and my face hurts alot of the time. At times I feel like nobody understands. IT is my graduating year and this has really made it hard. I always cry because I am so afraid. I hope someday things will be back to normal. I guess my biggest fear is of the unknown, I am scared that I won't be able to be "fixed". If anyone has a success story I'd love to hear it. My tumor is 1.7cm in diameter and is only effecting my prolactin horomone. Good luck to everyone who has to go through this awful thing. Crystal Harrison <phelash1_AT_minet.gov.mb.ca> Wpgosis, M.B Canada - Thu Jun 19 11:47:14 1997 Diagnosed with Prolactinoma 6/97. GP found it and is suggesting Parlodel and I just wasn't sure what I should do! This page was very interesting and helpful. Still not sure what to do, surgery or drugs but this was a good start! Thanks ever so much Pamela Colson <psd.oak.pamc_AT_ms.provo.k12.ut.us> Provo, Ut USA - Wed Jun 18 20:56:32 1997 Day 1 of Bromo...aughhhh. Does it stay this bad??? Correction to my previous posting. Tumor is 8mm. What happens now? Sommer <richkid_AT_axionet_DOT_com> Coquitlam, BC Canada - Wed Jun 18 20:31:11 1997 I have pituitary tumor and just registering myself..... Halona <Haalona_AT_aol_DOT_com> USA - Wed Jun 18 16:29:47 1997 I was diagnosed with a benign pituitary gland tumor. I was put on bromocryptine and couldn't handle it after 4 days. I am now on cabergoline. Has anyone noticed large amounts of hair loss (during shampoo and brushing)? It may not be from the medication but from the changing of the estrogen levels (so my doctor says). Please help me find out if there is anything I can do to prevent my hair going down the drain. I started taking hair nurturing vitamins but haven't seen any changes yet. Also, has anyone noticed weight gain with cabergoline or have there been any success stories with this medication (or warnings). Please help me. I feel like I am at the end of my rope and could just cry... Kristiina Rauch <brauch_AT_ixnetcom_DOT_com> Renton, WA USA - Tue Jun 17 22:56:31 1997 I have been diagnosed with a 3cm X 3cm pituitary adenoma resulting in high levels of prolactin. I am a 52 year old white male. I would appreciate any feedback from persons with similar problems. Gary K. Frazier <gfrazier_AT_eastky_DOT_com> Prestonsburg, KY USA - Tue Jun 17 17:01:33 1997 I just wanted to say Thank You to all of the people who sent me their support and advice over the past few days. I just got back from my neurosurgeon and he has prescribed Parlodel for me. He informed me that the side effects are minor nausea and other discomforting things, but I have noticed that alot of people here have had extreme side effects to this drug. Dows anybody have any suggestions or comments that might be able to assist me before I get me presecription filled??? He explained that if I can not tolerate the medication then I may have to go through surgery. Apparently the tumor is 9mm - is this large or is it a size that can be treated successfully? I am still having communication problems with doctors - why are they so secretive??? Once again thank you very much for your support and advice - I honestly do feel alot better now that some of you have replied. Take care and I'll keep you posted... Sommer Setterstrom <richkid_AT_axionet_DOT_com> Coquitlam, BC Canada - Tue Jun 17 15:26:20 1997 I have just returned from having a CRH stimulation test. I was referred to have this test, as I am a fibromyalgia/chronic fatigue patient. Previously, I had a chortozol stimulation test that was negative. With this CRH test, a base-line blood level is established and after that, a hormone (of which is similar to your own) is injected. Then blood is drawn every 1/2 hr to check to see reaction. This is a very new test and is suppose to show if there is a deficiency in your pituatory/adreanal glands, which is usually common in chronic fatigue syndrome patients. I will get the results back in about ten days to two weeks, and will let you know how I made out, if anyone is interested. I'd be glad to answer any questions I can for anyone needing answers relating to this test, fibromyalgia and chronic fatigue syndrome. I've been living with this for at least the last four years and have learned quite a lot - especially about getting not only medical treatment, but also phsycological treatment and physical therapy and the importance of having a good team of all to work with you concerning all of the above. Lauren <LaurenEggs_AT_aol_DOT_com> Hope, RI USA - Tue Jun 17 14:22:47 1997 prolactanoma diagnosed 1988 WILLIAM D. QUEEN <jasonqueen_AT_pipeline_DOT_com> Canton, NC USA - Mon Jun 16 23:59:53 1997 I have one and get operated on this Friday June 20, 1997 William R. Thompson Colville, WA USA - Mon Jun 16 19:44:05 1997 I just found out that I have prolactinoma a few weeks ago. I had my CT Scan done and the results went back to my doctor, but I still havn't heard anything. I have been attempting to contact her everyday for two weeks, but she never returns my calls. I know that I have to be on medication, as a neurosurgeon had a look at my CT Scan, however, he is a friend of the family - not my doctor. I am looking for help as my relationship is going down the tubes as a result of the uncertainty. We are both under tremendoud stress as we both really want to have children; but now we don't know if we can. It is scary knowing that there is a tumor in your head affected almost every aspect of your life, and you don't know what to do. I am sure that all of you have been through this as well, but what do you do in order to see a doctor??? What I have found out on this guest book has been extremly helpful but incredibly intimidating. Some of your stories about the side effects of medication and what-not are pretty discomforting to me. Is it as bad as it sounds? I am so confused about this whole thing. The only reason that I know that I have it for sure is because our family friend 'snuck a peek' at my resluts for me. It has been two weeks since my CT Scan and still nobody has contacted me. Do you have any suggestions for me? Please help as I don't think I can go another day not knowing... Sommer Setterstrom <richkid_AT_axionet_DOT_com> Coquitlam, BC Canada - Sun Jun 15 20:55:18 1997 I was diagnosed with proclatinoma about 3 years ago with elevated levels of prolactin. After trying the bromocryptine several times and finding it intolerable, I simply just went stopped taking the medication and dealing with the breast leakage. The beginning of last year, the breast leakage started to increase and I stopped having my periods. After another try with Bromocryptine, I opted to have the surgery. The transphenoidal surgury was successful at removing the tumor. Prolactin levels are normal and I started menstruating 1 month after the surgury. I take a very small dosage of prednisone (cortisone replacement) everyday now and feel great to have my body back to normal. If you have any questions about the surgery or prolactinoma, please e-mail me. Lisa <idesign3_AT_ix_DOT_netcom_DOT_com> Bloomingdale, IL USA - Sun Jun 15 18:47:14 1997 I have diabetes insipidus as a result of having my pituitary gland removed because of cushings disease . I am still havingproblems getting the dosage of the desmopressin talets correct.If anyone out there has DI please could you tell me what happens when you take your dose of DDAVP.Doesit stop you producing urine completely, if so for how long? or does it only reduce it, also once it has run out, do you wait until you are thirsty until you take the next dose?I am also on metyrapone tablets as I am still producing cortisol,are there any long term side affects of this drug?I seem to be getting more and more headaches,since my dosage has been increased. R Atkinson <atkinben_AT_aol_DOT_com> oxford, uk - Sun Jun 15 15:06:48 1997 I tried Dostenex for high prolactin levels and breast secretions. I would like to hear from people who have tried Dostenex and its effect on lactation. When I took Dostenex the lactation from my breasts persisted even though my prolactin level decreased. My endocrinologist doesn't know why. Please drop me a line if you know. Thanks. MM<> USA - Sun Jun 15 11:01:24 1997 MY GIRLFRIEND HAS HIGH DAY 3 FSH LEVELS AND MENSTRUAL CYCLES AT 20 DAYS APART. SHE HAS BEEN TOLD THAT SHE IS GOING THROUGH MENOPAUSE AT 30 YRS. OF AGE. SHE HAS SYMPTOMS OF PITUITARY TUMORS AND NIPPLE DISCHARGE. DIFFICULTY SLEEPING AND CONSTANT FATIGUE.DOCTORS SAY THAT SHE IS HAVING OVARIAN FAILURE AND HAVE OFFERED NO EXPLANATION. IF ANYONE HAS HAD THIS PROBLEM OR HAS KNOWLEDGE OF IT, PLEASE CONTACT ME AT phillier_AT_ezdial_DOT_com thank you for any help you can give us. Paul Hillier <phillier_AT_ezdial_DOT_com> Va. Beach, Va USA - Thu Jun 12 11:49:07 1997 MY GIRLFRIEND HAS HIGH DAY 3 FSH LEVELS AND MENSTRUAL CYCLES AT 20 DAY APART. SHE HAS BEEN TOLD THAT SHE IS GOING THROUGH MENOPAUSE AT 30 YRS. OF AGE. SHE HAS SYMPTOMS OF PITUITARY TUMORS AND NIPPLE DISCHARGE. DIFFICULTY SLEEPING AND CONSTANT FATIGUE.DOCTORS SAY THAT SHE IS HAVING OVARIAN FAILURE AND HAVE OFFERED NO EXPLANATION. IF ANYONE HAS HAD THIS PROBLEM OR HAS KNOWLEDGE OF IT, PLEASE CONTACT ME AT phillier_AT_ezdial_DOT_com thank you for any help you can give us. Paul Hillier <phillier_AT_ezdial_DOT_com> Va. Beach, Va USA - Thu Jun 12 11:46:59 1997 Just found out my 17 year old nephew has a 1.5cm tumor on his pituitary gland. Suspect acromegaly. Currently 6'5" and still growing. Jaw is protruded but not too bad. Had MRI and blood tests for GH level, find out results tomorrow from endocrinologist. Neurologist confirmed tumor from CT scan. Any other teens out there with this? Please e-mail me. Thanks. Tammy <rhinos_AT_righetti.sbceo.k12.ca.us> Santa Maria, CA USA - Wed Jun 11 20:29:17 1997 My husband was diagnosed with cushings syndrom 2 yrs ago. He had a pitutary tumor removed and was on cortisone for two months. reciantly He was diagnosed with a reacurrance of pitutary tumor and we are in the process of sceduleing surgary to remove the pitutiary gland. Kelly Smiht <kellysmith_AT_mie_DOT_com> salem, or USA - Wed Jun 11 16:05:21 1997 I would like to recieve information from people who have been diagnosed with prolactin of level of 50. I have seen the neurologist and he says that he had to conduct more tests in order to find out for sure if I had this problem. If anyone has any information or suggestions to my situation please e-mail me. oscar lopez <oscarl_AT_icanect_DOT_net> hialeah gardens, fl USA - Tue Jun 10 20:47:45 1997 P.S. Once I stopped the Palodel (6 weeks ago) I began having the energy needed to do aerobics etc. I don't think I was clear about how I lost the 11 pounds. It seems that without the side effects I can do a lot more! Torry Greene USA - Tue Jun 10 12:00:27 1997 P.S. Once I stopped the Palodel (6 weeks ago) I began having the energy needed to do aerobics etc. I don't think I was clear about how I lost the 11 pounds. It seems that without the side effects I can do a lot more! Torry Greene USA - Tue Jun 10 12:00:16 1997 I was diagnosed with a micro-adnoma 6 years ago. It was discovered when I began having headaches, weight gain, ceasation of periods, etc!!!! I saw both neurosurgeons and endocrinologists. I was put on Parlodel-hated it! Eventually I found an Endo. that suggested that I take the Parlodel vaginally. Eventually I had few side effects and took the weight right off. Then two years ago I began experiencing fatigue, lactation, weight gain- miserable stuff! I decided 1 1/2 months ago to ween myself off of the Parlodel and take nothing. I found a wonderful Endo. at Duke that prescribed Dostinex. I've taken it for one week and have had no side effects!!!!!!!!!!!!!!!!!!!!!!!!!!!! I haven't felt this energized in 6 years!! I have taken off 11 of the 50 pounds gained!!!! Things are much easier without the side effects from Parlodel! FYI I had a slight battle with my insurance company about covering Dostinex. It's settled now and shouldn't be a problem in the future. Torry Greene <tgreen.nsh1_AT_mail.unch.unc.edu> chapel hill, nc USA - Tue Jun 10 11:55:33 1997 Hi everyone, I was diagnosed in July 1996 with a 3mm microadenoma. So far, I haven't gone on any medication and am still getting my period. I have felt compeltely fine other than the galactorrea (and am concerned about osteoporosis.) I have another MRI in July, but I just thought it would be nice to have a positive story on the board because I have felt great and am apprecciating my life more than ever. Thanks for everyone sharing and be positive. Shirley <shirley.brockhill_AT_alphanet_DOT_net> Toronto, ON CAN - Mon Jun 9 11:49:51 1997 At 26, I was diagnosed with a prolacinoma (approx. 8mm) last year (Dec. '96). I have been on Parlodel for 5 months and my 180 privious level is back to normal, however, my second MRI showed no shrinkage of the tumor. My doctor has decided to wait 4 more months before a third MRI and for me to contine the 5 mg. dosage of Parlodel. This whole diagnosis came about because of increased levels of blood work done prior to attempting pregnacy...at this point, my doctors have said that we would discuss the possibilites following my 3rd MRI. I am wondering what, if any, will the possibilities be if the tumor does not shrink...Has anyone come upon this problem? Jenni USA - Sun Jun 8 20:17:31 1997 Thanks for providing this web page! Karen Sapp <wawsapp_AT_aol_DOT_com> Mount Airy, MD USA - Sat Jun 7 22:57:57 1997 Diagnosed with micoadenoma in Dec. 1996. No medication prescribed by physcian. Doctor has scheduled another MRI for December 1997, has instructed me to monitor any abnormal growth, however does not feel as though additional treatment is necessary at this time. Just wondering if waiting a year between MRI's is normal. KTC Kevin Campbell <campbk_AT_worldnet.att_DOT_net> Chelmsford, Ma USA - Fri Jun 6 20:53:55 1997 My 7 year old son has just started growth hormone shots and we're struggling to make it as painless as possible. Is there any reference info we can research that might make the shot process easier for him? I've toyed with the idea of hypnosis; we've actually tried administering it while he's asleep but don't want to continue that. Any help you can provide will really be appreciated! Thanks Dale Sizemore <DaleMSizemore_AT_unn.unisys_DOT_com> Atlanta, Ga USA - Fri Jun 6 16:47:52 1997 To anyone who previously wrote to me, I am no longer on the internet. I had my surgery for the third time. This time it was a laporoscopic bilateral adrenalectomy. So far so good. Few complications, but I'm fine. Unfortunately, I can't get any replies from my previous "penpals." J. Frowley <no longer on internet> Windsor, OOON canada - Thu Jun 5 15:37:49 1997 I am newly dignosed with prolactinoma, I've been on Parlodel for about 6 weeks-Not working! alice <a2lily_AT_aol_DOT_com> richland, mi USA - Thu Jun 5 2:18:41 1997 Have taken Dostinex for two weeks. No throwing up! Yaaa!! Will be checking Prolactin levels in two weeks. Pray that they go to normal! Karen Landry <klandry_AT_iamerica_DOT_net> Carencro, LA USA - Wed Jun 4 23:37:44 1997 Have taken Dostinex for two weeks. No throwing up! Yaaa!! Will be checking Prolactin levels in two weeks. Pray that they go to normal! Karen Landry <klandry_AT_iamerica_DOT_net> Carencro, LLA USA - Wed Jun 4 23:37:06 1997 Hello, everyone. I am scheduled for surgery with Dr. Brooke Swearingen at MGH on June 19 for removal of an 8mm pituitary tumor, which may be a cysticprolactinoma. I've received tremendous support from others who have had surgery, via messages posted here and on PTNA message board. I'd love to hear from anyone else who has undergone pit surgery and can share insights into the experience, advice, information on recovery, symptoms both before and after surgery, etc. Please e-mail me at mary_AT_zjs_DOT_com. Thanks in advance.... Mary Kay <mary_AT_zjs_DOT_com> Milwaukee, WI USA - Wed Jun 4 14:54:49 1997 Just adding in my correct location, didn't realize my address was defaulting to "USA" Katie Mission, BC Canada - Wed Jun 4 13:10:52 1997 Thank you Dorothy for the name of your Endocrinologist in Vancouver. That gives me a place to start with finding the appropriate help for my son. He has had a complex of symptoms since he was very small (now 13 yrs old) which match the symptoms of a pituitary problem. Katie USA - Wed Jun 4 13:03:38 1997 Our 11 year old son was just diagnose with acromegaly from a tumor on the anterior lobe of the pituitary gland. Would like to hear from somebody who has had a similar experience. Thank you. Thom and Dana Thom and Dana <New Wp_AT_aol_DOT_com> San Diego, CA USA - Wed Jun 4 1:48:15 1997 First of all, I find this very interesting. I never new there were so many people with this similar and very unusual problem. Someone was asking for the name of an Endocrinologist in the Vancouver, BC area. My physician was Dr. Wilkins. His office is located on Burrard Street in Vancouver. He was excellent in looking after my medical needs. My problem was first detected after the birth of my second son. I was then 23 years old. It went undetected for the next 5 years which by the look of things was not too long. I have to say it was only through reading on my part that it was diagnosed. I suggested it to my GP and he took my concerns seriously and followed up with a blood test. Within 10 days I was in the hospital undergoing tests and getting ready for surgery. The surgery was successful but within one year many symptoms returned and I then had to undergo radiation therapy. I am happy to say that is has been 17 years and I have had no recurrences. I have not had to take any drugs and my life has returned to normal. You may be interested in the many symptoms I experienced. They were: a. cessation of menstrual periods; b. lactation; c. night sweats; d. weight gain; e. diabetes insipidus; f. numbness in my right hand and shoulder; g. poor circulation in my hands; h. dull headaches; i. enlarged tongue; j. thickness above my brow; k. enlarged nose; l. lack of interest in sex; to name a few. I guess the main question I have is if I could have passed anything on to my son as I feel I had already developed this when I was pregnant with him. He has since passed away and I sometimes wonder if he was plagued with any symptoms that we did not recognize as being a direct result of my problem. Anyways, I hope you all come through as well as I did. I no longer go to Vancouver for follow up tests. My GP can do a simple blood test to see if my hormone levels are OK. Take care - Dorothy dorothy <ndc_AT_island_DOT_net> duncan, bc Canada - Wed Jun 4 0:00:18 1997 My name is Paris Saizan and I am 37 years old. I have a benign tumor in my pituitary gland. This tumor secretes prolactin so it is call a prolactinoma. The prolactinoma was diagnosed on March 3, 1987. It has apparently been growing since I was 15 or so (1975). At diagnosis, my serum prolactin level was 13,200. This is considered an astronomical level. I began having severe headaches my junior year in high school. I distinctly remember reading my physics textbook at the kitchen table and the headache leveled me. I stopped studying and went to bed. Since then, I have battled with headaches of varying intensity. As my mother experienced regular migraine headaches, I and my family concluded that I had inherited the headaches. That was in 1977. By 1979, I experienced significant fatigue. I was known to fall asleep while visiting friends and sometimes right on the living room carpet or on a couch. I even once did this at a small get together with my fiancee. About two years after I married that sweet and very compassionate woman, my eyesight was beginning to fail. This was preceded by me losing job after job because I would literally lie down on the job due to my now dehabilitating headaches. I was so determined to be a good husband that when the first doctor we went to said I had no tumor that was causing the headaches and eyesight loss, I accepted it. I accepted the second, third and fourth doctor who concluded the same. They all made their diagnosis without physically examining my body or eyes. Finally, my sweet wife was wondering if maybe she just married a flake who didn’t know how to keep a job. By this point, I was so much in denial that I even had vision loss that I ‘wrote off’ me losing so many jobs as coincidence. The fifth doctor that we saw actually told me and Eve (my wife), that I was allergic to work. The solution to my tightened and crumpled upper body was to take a walk on the beach with a bottle of wine. I was in so much constant pain that my shoulders were contorted and my stomach was constantly contracted. I was a physical mess. The strain on Eve was eating here up too. This fifth doctor told me that he would prescribe to me anything I wanted. He finally gave me Darvocet. This powerful pain killer didn’t even make a dent into my constant unbearable headaches. My entire right side began to go numb. I had frequent fevers. Eve was at a complete loss as to what to do. At this point, I was in bed sleeping 12 to 14 hours a day. To relieve myself, I took 8 Darvocet pills over the course of one day and overdosed. I slept for 20 hours. My body was still feeling and absorbing the intense tortuous pain. When I finally awoke, I and the bed covers were completely covered in sweat. Unemployed and completely guilty for not supporting my new family, I knew I had to get up and find another job. At this point, I was willing to take anything. I asked a childhood friend to employ me. He was a manager of a metal fabrication company. I remember arriving to work with great joy. I was certain that I would not lose this job. As the day progressed, it became apparent to my friend that I could not read. I was holding papers an inch from my eyes. When approached by my friend, he asked me what was wrong. I told him that nothing was wrong. He then asked me why I could not see. I told him that I could read but I was doing so by focusing on each character at a time and then, when I read all the characters in each word, I would mentally figure out what the word was. He told me that he could not use me if I couldn’t read. I assured him that I was fine and that maybe I had a problem with my eyeglass prescription. I went to an optometrist to check on my prescription. He said that the prescription was accurate and up-to-date after testing my vision. He then did something not a single of the five doctors I had seen prior did. He put a light up to my eyes and examined them. What he found, when he found it, saved my eyesight. For that reason I tell you his name. Vernon Wong located at Santa Teresa Kaiser, San Jose, California. He discovered white paling on the back of my eye. This indicated that my eyes were undergoing great internal pressure. The question; what was causing the pressure? A CAT scan showed that I had a tumor in my pituitary gland the size of a hen’s egg. I got the call the next morning. I have never felt more relief when I got the news. You see, I was all right. There was nothing wrong with my character! My not being able to keep a job was not my fault! So I was actually capable being a good husband and provider for my new family! On March 3, 1987, Dr. Joel Steinberg, Redwood City Kaiser, California, inserted a ventricular shunt to relieve the pressure in my cranium and save my eyesight. I am happy to say that with the exception of mostly peripheral blindness, I can see, drive and yes, hold a job. As you see, I can type as well. I watercolor and draw portraits too. The following day, March 4, 1987, I was diagnosed with a post-operative hematoma; a blood clot. The removal of this blood clot was more risky than the shunt insertion. Ask me sometime how the doctors were prompted to check for an post-operative abnormality sometime. Dr. Charles B. Wilson, a man whom I have extreme respect for, both as a surgeon and an individual, performed a trans-phenoidal on me on November 24, 1987. He was able to remove about 35% of the tumor. He decided not to rip out my pituitary gland so as I could live a reasonably normal life. I thank him dearly for his work. My most recent prolactin level was 618. Eve and I cannot have children as the result of this tumor but we remain happy that we have had each other for 12 years in a happy marriage. If you have any questions regarding procedures or further details, please do not hesitate to contact me. We have worked with many people about to undergo surgery and we welcome all inquiries. My email address is: psaizan_AT_netgate_DOT_net. Eve’s is aspenglow_AT_netgate_DOT_net. Thank you for listening. Paris Saizan <psaizan_AT_netgate_DOT_net> San Jose, CA USA - Mon Jun 2 22:59:02 1997 Greetings! I am the spouse of a husband with a Prolactinoma. I am here to talk and support those of you who would like to write. My husband was diagnosed 10 yrs. ago and will be starting Dostinex (Cabergoline) in the next few days... what should WE expect??? Take care and FEEL FREE TO WRITE TO US! Eve Saizan aspenglow_AT_netgate_DOT_net psaizan_AT_netgate_DOT_net Eve M. Saizan <aspenglow_AT_netgate_DOT_net> San Jose, CA USA - Mon Jun 2 17:09:15 1997 EXCELLENT!!! Thank you so much for this WONDERFUL place to go to for help and support. WE ARE NOT ALONE!!! When I was diagnosed 10 yrs. ago there was no such place... there wasn't even an "internet", ha!! I welcome ANYONE who wants to e-mail me. THANK YOU AGAIN!!!!!!! Paris R. Saizan psaizan_AT_netgate_DOT_net Paris R. Saizan <psaizan_AT_netgate_DOT_net> San Jose, CA USA - Mon Jun 2 16:54:41 1997 requesting information concerning high prolactin levels over 70 (73). I am 45, female, 2 children, tubal 19 years ago. rome lewandowski <rlewandowski_AT_disc.dla.mil> philadelphia, pa USA - Mon Jun 2 11:29:05 1997 Testing Amy Humphrey <johnsrfer_AT_aol_DOT_com> Los Angeles, Ca USA - Sun Jun 1 2:28:23 1997 request all written information available on diabetes insipidus & elevated prolactin levels carmen roldan <jrock_AT_webtv_DOT_net> hampton, va USA - Thu May 29 23:39:33 1997 Just checking if you have any info. about cerebral astrocytomas. Last year my sister in law heart that she has this kind of tumor in her head. Can you help me to get any info about this tumor (statistics, live chances etc.) regards from Culemborg, a small city in the Netherlands near Amsterdam Tedley Geurtsen <tedley_AT_euronet.nl> Culemborg, Holland - Thu May 29 17:07:23 1997 I am 31 and my 8mm non-functioning tumor was discovered after going off birth control pills in October and not resuming menses. In addition,I have galactorrhea, headaches, anxiety, shakiness, constant dizziness, fatigue, coldness/numbness in my hands (a symptom my docs STILL don't recognize as being related to the tumor), intolerance to cold, difficulty concentrating and remembering, and the list goes on!.... Prolactin has ranged between normal (17) and 52.6, with other hormones on the low side. A gonadotropin-stimulating test revealed my pituitary still has the ability to function. Based on an MRI, the doctors believe the tumor may be fluid-filled cyst, possibly a cysticprolactinoma. Medication is not an option for me, as I absolutely CANNOT tolerate Parlodel and other medications -- Dostinex (cabergoline) and Permax -- might help reduce the prolactin, but they don't know what effect they would have on a fetus if I were to become pregnant (which is one of the goals). Bottom line, I will be scheduling surgery with Dr. Brooke Swearingen at MGH, probably the week of June 24. Both he and Dr. Katznelson feel the prognosis for recovery, meaning my pituitary will resume normal function, is quite good. Advice, words of wisdom and prayers are gratefully accepted!! I would like to hear from others who have had experience with surgery for a pituitary cyst -- symptoms leading up to surgery, the surgical experience itself, recovery, post-surgery symptoms, experience with Dr. Swearingen, what I can expect after surgery, how long until you felt better, etc. I am VERY afraid of the surgery, so I'm eager to hear about "happy ending stories." Thanks.... Mary Kay <mary_AT_zjs_DOT_com> Milwaukee, WI USA - Thu May 29 14:40:20 1997 My doctor has started me on Dostinex. Is anyone taking it and what side effects are you experiencing? SHIRLEY BISBEE <fought_AT_swbell_DOT_net> Austin, Tx USA - Thu May 29 0:59:02 1997 HELP WHERE IS THE BEST PLACE TO GO FOR CUSHINGS NEED HELP NOW THIS IS GETTING VERY VERY VERY SERIOUS STRETCH MARKS EVERYWHERE JOINTS LOCKING UP VERY VERY SICK NEED THE BEST PLACE TO GO MY CUSHINGS WAS CAUSED FROM PREDNISONE FOR IDIOPATHIC ANAPHYLACTIC EDEMA STILL ON PREDNISONE BUT TAPERING OFF ON NEW MEDICINE FROM ROME ITALY NEED HELP WHERE TO GO THE BEST BEST PLACE LISA A. PAGE <LP33333_AT_AOL_DOT_com> WATERFORD, MI USA - Wed May 28 20:06:16 1997 MY FATHER, AGE=56, HAS BEEN DETECTED FOR PITUTITARY MACRODENOMA (AS PER CT SCAN). MR ANGIO IS DUE TOMMOROW TO FURTHUR DETECT IF THERE IS ANEURISM. THE ENLARGED CELLA IS 2CM X 2.16 CM WELL DEFINED ROUNDED LESION. IT IS ESTIMATED THAT HE HAS BEEN NURSING THIS TUMOUR FOR 5 YEARS OR MORE. THIS MAY BE THE CAUSE OF LOSS OF VISION OF ONE EYE ABOUT 10-12 YEARS BACK, ANOTHER EYE IS NOW SUFFERING WITH GRADUAL LOSS OF VISION. OTHER THAN VISION THE PATIENT SUFFERS FROM FREQUENT LOSS OF MEMORY, GENERAL TIREDNESS, LOSS OF SLEEP & FREQUENT HEADACHES. HE HAS NO DIABATESE, HIGH BLOOD PRESSURE OR ANY OTHER MAJOR AILMENTS. HE IS A NON SMOKER AND NON-ALCOHOLIC. I HAVE BEEN RECEIVING ADVERSE VIEWS ON THE SUBJECT IN CONTEXT TO HIS POSSIBLE TREATMENT. MAY I CALL UPON THE CO-SHARERS TO PLEASE EXPRESS THEIR EXPERIENCES AND VIEWS TO HELP ME OVERCOME THIS PROBLEM. THERE IS NO PREVIOUS FAMILY HISTORY OF SUCH TUMOUR. Manoj Poddar <rkhanna_AT_giascl01.vsnl_DOT_net.in> Calcutta, WB India - Wed May 28 3:33:26 1997 I have recently been diagnosed with a pituitary tumor. I was on parlodel for three months. My prolactin went from 100(+) to 60(+). I did not experienced much if any side from this medication. However, my menstrual cycle did not return. My doctor has now prescribed Dostinex. I have not had a chance to meet with my doctor yet and I am wonder what type of side effects to expect. Teresa <teresa_AT_springfield-sanborn_DOT_net> MN USA - Tue May 27 22:55:37 1997 I have a tumour in my Piturity gland, and i am getting it sorted out but id like to know what sort of surgery you have if you have to have it removed. :) keep up the good work, i think that this page is a really good idea, it cheered me up for a Monday Morning!!! :) Thanx Harriet Harriet Dunlop. gravesend, Kent., da12 england - Tue May 27 6:37:33 1997 My sister had a benign tumor removed from her pituitary almost two years ago after being diagnosed with Cushings Disease. Her cortizol level has risen to "normal" levels, but her symptoms are getting somewhat worse. I am interested in any information that can be had about other diseases that may be masked by Cushings or treatments, medications that alleviate the symptoms. They refuse to offer her any relief and fighting with insurance over doctors and testing costs has drained her to exhaustion. Lisa Leuck <lisaleuc_AT_mwci_DOT_net> USA - Mon May 26 19:25:35 1997 Is there anyway one can delete what one has written on the Pituitary Tumor Guestbook page? Maria C. Sparks <norman_AT_ois_DOT_com.au> Stirling, WA Australia - Mon May 26 8:35:29 1997 Is there anyway one can delete what one has written on the Pituitary Tumor Guestbook page. Maria C. Sparks <norman_AT_ois_DOT_com.au> Stirling, WA Australia - Mon May 26 8:35:18 1997 I have been diagnosed with a pituatory adenoma I am recently experiencing frequent nose bleeds - can there be a connection? debbie h <dcjh_AT_erols_DOT_com> USA - Sun May 25 12:13:46 1997 I have been diagnosed with a pituatory adenoma I am recently experiencing frequent nose bleeds - can there be a connection? debbie h <dcjh_AT_erols_DOT_com> USA - Sun May 25 12:13:31 1997 Hello Friends, My name is Rich and i am 29 years old and I to have a pituitary tumor. Let me tell you a little bit about myself. I have had this tumor for as long as i can remember since i was born , the doctors didnt know about this until about 15 years ago .when there was really no treatment ,i have had visits with many doctors and they all say the same thing my case is a case they have never seen before I was diagnosed with hypogonadotropic hypogonadism, which is a variation of Kallmans syndrome. I have been on all kinds of drugs and treatments. i have very low testosterone levels barely any libido, and my muscle mass is not the best. i have very little facial hair, well very little hair at all throughout my body. my LH and FSH levels are very low, Eventhough i look very normal i do have alot of medical problems. i have a beautiful wife and a baby on the way , Oh yea your probably wondering a baby how? with all your problems. We chose to go with a donors sperm because i have very little or if any at all. My doctors feel taking out my tumor would be a mistake so there it stays for now. i was born in 1967 when the drug DES was given to our mothers to prevent miscarriages, BUT knowone told them that DES was only supposed to be given to mothers that were carrying girls not boys. Eventhough the doctors say that DES did not play a part in my problem i Strongly disagree. If there are any men out there that have the same problems as i . Please contact me i would love to here from you , i really feel i am all alone with this problem, I have been fighting this mentally and physically for years . i am ready to give up i cant do this anymore , I am very tired of all the medicine and doctors and feeling just like a test subject and not a person with feelings and emotions. Thanks for listening . Rich Rich <Rich1027_AT_aol_DOT_com> Manchester, NH USA - Sun May 25 10:26:35 1997 Does anyone know of a recommended endocrinologist in British Columbia Canada? katie USA - Sun May 25 0:53:20 1997 I have had a nonfunctioning pituitary adenoma with surgery at Emory University Medical Center in December, 1975 and surgery for a recurrence at the University of Virginia Health Sciences Center in February 1995 and Gamma Knife treatment at the same location in May 1995. I am interested in remaining current on pituitary symptoms, treatment, literature, conferences etc. Should you have information, programs,or the like in addition to your website, I would like to be apprised. Thank you for your attention to this request. Ronald W. McKinney <rwmckin_AT_greenville.infi_DOT_net> Greenville, SC USA - Sat May 24 12:32:20 1997 I have had a nonfunctioning pituitary adenoma with surgery at Emory University Medical Center in December, 1975 and surgery for a recurrence at the University of Virginia Health Sciences Center in February 1995 and Gamma Knife treatment at the same location in May 1995. I am interested in remaining current on pituitary symptoms, treatment, literature, conferences etc. Should you have information, programs,or the like in addition to your website, I would like to be apprised. Thank you for your attention to this request. Ronald W. McKinney <rwmckin_AT_greenville.infi_DOT_net> Greenville, SC USA - Sat May 24 12:32:15 1997 Hi, I'm 20 years old and currently undergo hormone treatment for panhypopituitarism and diabetes insipidus. Both of these conditions are due to a benign tumour which I had in my pituitary gland when I was two years old. The tumour when found was enclosing the pituitary so I lost all of it when they removed the tumor. I've been on hormone replacement therapy as far as my memory will take me back. I haven't ever been in contact with anyone who has the same condition, or who has suffered from total hormone deficiency from such a young age. I'm am very eager to get in contact with anyone who has/had similar experiences. This www page has been a great insight...it is easy to think you are alone when having such a rare sort of condition. Holly Walsh <hools_AT_tne_DOT_net.au> Adelaide, SA Australia - Fri May 23 2:28:54 1997 Interested in results of those taking human growth hormone and problems with Insurance company J.R. Phelps <jphelpsn_AT_counsel_DOT_com> Tallahassee, FL USA - Thu May 22 12:52:46 1997 I have a pit. tumor which was found 2.5 years ago. I stared treatment on "Parlodel", and continued for aprrox. 1 year. My Doctor, Dr. Dehaven in Savannah GA, got me into the study with cabergoline. I have had tremendous results with the new medication. My prolactin count went from a whopping 9800 to leat than 20 in 2 years on this study. Thanks to all who were involved in this study and the researchers and doctors involved in the development. If any one would like any other information, please contact me via E-Mail or my hove address is as follows: David Pittman, Box 453 Satilla Church Road, Baxley Georgia, 31513. David Pittman <David.L.Pittman_AT_snc_DOT_com> Baxley, GA USA - Tue May 20 11:18:30 1997 Greetings! I'm so happy that I turned to your Web Page. It was very informative to me, as I was not aware of this condition. I will keep you all in my prayers. God Bless You. Margo T & E World-Wide Ministries <margotnt_AT_cet_DOT_com> Silverdale , WA USA - Mon May 19 16:54:06 1997 I have had a benign pituitary tumor since 1976. Treatment was surgery to remove some of tumor and bromocriptine. At this time Paradoel was at the "trial" stage. Though tests indicated I could go off the medication once I was pregnant, in reality this was not the case. Double vision developed immediately I ceased the medication. However, once back on medication all was okay. There was no effect on my son who is now 15. I am still on the medication, amounts vary from 5mg to 7.5mg. When I was diagnosed with this problem there were only 6 individuals with my problem. I am interested to learn why the increase since then. It appears it has greatly increased in the last ten years. To assist me with some research I would appreciate response from people under the following headings. I am mainly interested in responses from people with prolactin induced pituitary tumors. Responses are what occurred in my life. Birth: Apparently there was trauma. Childhood: Had chickenpox on board migration ship at 2and half years of age. Went to two schools, quite stressful. Teenager: Was hit by a car and had to assert myself with my education. Education: Persistent and determined personality ensured I achieved my goals. Events: My resilence ensured 2 "dramas" in my life did not prevent from succeeding in my chosen career - teaching. Maria C. Sparks <norman_AT_ois_DOT_com.au> Stirling, W.A. AUSTRALIA - Sun May 18 23:13:15 1997 I am 25 and have had a prolactinoma for over three tears. My doctor has not given me specifics on size, but has recommended surgery. I was on bromocriptine for two years, but it did not help, the tumor remained the same. I have mood swings and depression daily. I alos have little to no sex drive and I have headaces and fatigue daily. I have used acu pressure at times to relieve this as pain meds do not work. I feel like people can't understand these feelings, and they relate them to a mental depression, or being down in the dumps. About five weeks ago I started bleeding-like a period but it never stopped and still remains heavy . The doc says-yes it's related to the tumor but won't or can't say how. When I talk to people I feel like a hyperchondriac or just a sickie. My whole life can't stop to accomadate this tumor. I am 25 and graduating from nursing school in 5 months. Is there anyone who can give me some advice or encouragement? Will this ever go away or does it continue? Am I having deppression on top of this tumor or do others have that side effect? Please write if you can tell me anything or if you just want to talk about your problem. I feel for all of you with problems much worse than mine. I hope I do not seem like a whiner to you. God bless you and please be as well as poss. God be with you. christy c <cdcm771_AT_AOL_DOT_com> dayton, ohio USA - Sun May 18 21:43:45 1997 My pituitary gland is not working. Because I have been on steroids for along period of time for ideopathic anaphylactic adema.Also two times last year I was taken off steroids cold turkey due to a pharmacy error. I have all the symptoms of cushings syndrome (very severe) and would like to get in touch with someone who has experienced something similar. Lisa Page <lp33333_AT_aol_DOT_com> waterford, mi USA - Sun May 18 12:50:52 1997 My pituitary gland is not working. Because I have been on steroids for along period of time for ideopathic anaphylactic adema.Also two times last year I was taken off steroids cold turkey due to a pharmacy error. I have all the symptoms of cushings syndrome (very severe) and would like to get in touch with someone who has experienced something similar. Lisa Page <lp33333_AT_aol_DOT_com> waterford, mi USA - Sun May 18 12:50:09 1997 I'm so glad that I was able to find this site. I was diagnosed with a macroprolactinoma in August 1989. My prolactin level was about 2000 and I had bitemporal hemianopsia (severe visual field defect). My visions went away immediately with bromocriptine (Parlodel) treatment, but the tumor did not shrink and the prolactin level remained high. In June 1990, I had a transphenoidal craniotomy done at USC which successfully removed most of the tumor. The prolactin level went down but only to about 200-300. While in medical school, the tumor began togrow back and my prolactin levels went through the roof. My endocrinologist put me on pergolide (Permax). It had no effect on the prolactin levels or the tumor. I then tried carbergoline (Dostinex). It also had no effect. I had surgery again in March 1993 to de-bulk the tumor in preparation for stereotaxic radiosurgery to be done at Stanford. The stereotaxic radiosurgery was done June 1993 and the tumor began to shrink over the next 2-3 years. However, my prolactin levels remained very high (~900). In the last year, my tumor has started growing again and I'm facing another round of radiosurgery. In the mean time, I've started Dostinex again in the hope that it will shrink the tumor. If anybody has any questions or comments for me, I'll be happy to hear them. I extend my good wishes to everyone out there struggling with this problem. Olu Ajilore <olu_AT_leland.stanford.edu> Palo Alto, CA USA - Sun May 18 6:21:55 1997 Please excuse spelling and grammar errors as I'm experiencing problems with my monitor and it is difficult to identify the errors. Maria Christina Sparks Maria Christina Sparks <norma_AT_ois_DOT_com.au> Stirling, W.A. AUSTRALIA - Sun May 18 6:07:04 1997 Please excuse spelling and grammar errors as my monitor is playing games with my keys, and so it is difficult to read the final product of my statements. Maria Christina Sparks <norma_AT_ois_DOT_com.au> Stirling, W.a. Australia - Sat May 17 7:02:47 1997 In 1976 I was diagonised as having a benign pituary trumour. I now know it is called a prolactinom. It took the doctors 3 years to discover. My only symptom was ceasation of my menstural cycle. As it was in 1973 I commenced my teaching caree the coctor put it down to occupational pressure and gergraphical change; my frist teaching post was 400 kilmeters from my city home. the population of this town was 2,000. It was a wheat and sheep town - not the place for a city slicker. Once discovered I had a choice of surgery, radiation and at that stage be part of a trial using the drug Paradoial. At that time only 6 individuals in Western Australia h had had a similar problem. Unlike my fellow informe colleagues I never inquired as to the size of the tumour etc. But the doctors suggested because of its size I should have surgery and then if I was "happy" (what was I to say) go on the medication. This I did till February 1981. My doctors, unsure of the effect on a foetus felt it best I cessed medication once I was pregnant. By February I was 4 months pregnat, than. So unintentionally I had taken my medication from the day of conception till February, when I had confirmation I was pregnant. However, within one week of stopping my medication I developed double vision, weekly checkups indicated my vision was getting worse. By the fourth week I was admitted into hospital and immediately put on the Paradoial - I cannot state the amount - but I certain I can find out. Fortunately it worked and abotion or neurosurgery did not have to be contemplated. The medication worked welll. My son is now 15 and has shown no effects of my being on themedication for 8 months of my pregnancy. I still am on the medicaltion. My daily intake has varied from 5mg of paradoail to 7.5. Never more than this. I have experienced left sided problems and fatigue and increase libido but tests here fail to show any correclation. As far as experiencing weight increase my endocronologist says the medication should help keep weight down. However, when surgery was performed on me via the old method - through the passage between the eye and nose- the neurosurgeon did say part of the tumour was left so as not to effect any pary of the pituary gland. So this may explain some differences of after effect symptom. Great to hear paradoial can be taken baginally - even though it is only in America- I hoping I can persuade my doctors to do something about it here. Tonya Walls please keep in touch and I will try and see if I can match my medical information with yours. From what you have written I say go for it, but if your doctor suggest going off the medication I would be hesitate. Maria Chiristina Sparks <norma_AT_ois_DOT_com.au> Perth, w.a. Australia - Sat May 17 6:59:44 1997 I was diagnosed with a "golfball-size " pituitary tumor in November of 1984. Surgery was out of the question because the tumor was within the folds of the brain in many spots. They opted for radiation and parlodel. Both have been very succesful. The last MRI i had (about two years ago)showed virtually no evidence of the tumor. On the down side, a cyst has been left in the tumor's wake and I have had some petit mal and one grand mal seizure; tegretol now has that all in check. I am also on synthroid and prednisone to stimulate the damaged pituitary. I have put on some weight, but all in all I am very pleased with how things are going. For those of you who are really suffering please hang in there. It took a while before the headaches were completely gone but they are now history and things are looking up! Fr. Dave Clifford <Dave2969_AT_aol_DOT_com> Bronx, NY USA - Fri May 16 14:52:34 1997 I am a 26 year old female. (Teacher) I have had a elevated Prolactin level for the last 8-9 months. My first problem was galactorrea, followed by no periods. I took Parlodel for 8 weeks and the galactorrea ended, but periods did not return. I stopped taking Parlodel because I couldn't take the headaches I believed was a side effect. Headaches did not cease when I stopped taking Parlodel. I am currently under the care of a neurologist. I am interested in hearing from anyone who may have experienced similar problems. My prolactin level is still in the 40's and I recently started taking Dostinex to try and restore it to normal levels. My MRI did not reveal a tumor, but just an "asymetrical" pituitary gland. Should I be concerned about this? I am looking for someone to talk to about this. By the way all my problems began after I stopped taking birth control pills, so I could try and start a family. Please email me! Thanks! Cindy Lavender <clavende_AT_access.k12.wv.us> East Bank, WV USA - Fri May 16 10:03:40 1997 I am so glad I found this guest book. I have found new friends who support me. Please write to me, then we can help eachother by sharing stories. For the Dutch: Ik weet sinds 1993 dat ik een prolactinoom heb en ik moet binnenkort een operatie ondergaan. Ik ben op zoek naar Nederlandse patiënten met een hypofyse tumor. Stuur mij a.u.b. een e-mail. Ik ben speciaal op zoek naar patiënten die een transfenoïdale operatie hebben ondergaan, het liefst in het AZG (Groningen). Ik wacht op reacties! E.A. Eising <eaeising_AT_worldonline.nl> Netherlands - Thu May 15 18:33:34 1997 It has not been one year since my initial diagnosis of my Pituitary Tumor. I was diaganosed with a 4.5 x 5.0 tumor which was crushing my optic nerve. I gradually lost most of my sight in my left eye and a large portion of it in my right eye. It diminished so gradually that I compensated for it not noticing the difference in my sight. My first surgery(transphenoidial Hyposectomy) only revealed the seriousness of my tumor. My Neurosurgeon was only able to remove a small part of my tumor. It turned out to be a fiberous mass, unlike most tumors that are a small milky mass. I underwent a Craniotomy two weeks later only to hear that they could only slightly clear the tumor away from my optic nerves. After my operations I was out of work for two months. I had few side effects after my surgeries. Three weeks after my second surgery I was walking 5 miles a day. I did this on my own behalf to clear my lungs of the Anestesia from my operations. Each day I walked a little farther and cleared out my lungs a little more. Initially after my surgeries it hurt to just laugh. Three months later after my surgeries I underwent the Gamma Knife Radiation Treatment at the Dallas Presbyterian. I was a realitively painless procedure with slight side effects. Mostly I suffered small headaches that progresively got farther apart to the point where they fairly rare now. After returning to my job after being off two months, which was at a major hotel chain. It was unbeliveable the amount of prejudice I encountered coming back to work. It was as if I was not even capable of performing my job anymore. When I came back to work I actually felt better than I had been in several years. But the initial message I got upon coming back to work was that I was not medicaly fit to be there. I had a supervisor who literally harassed me on a day to day basis with every intention of either firing me or making me quit. I have encountered prejudice in my life before. But this coupled with my medical problems was a bad combination. From my second day back I spent every waking moment looking for another job. When the Fall came around I was lucky to be hired by a major company. I now work in office with 1500 other people. I am basically no different than any else. There are many people there with disablities. But we all work as a team. I now lead a fairly normal life. I ride a bicycle on a regular basis. I work out often in our company weight room. I have an old house that I keep my self busy with projects on my days off. I recently laid a wodd parque floor in my kitchen and tokk out a wall. I tend to sleep a little more than I used to in the past. My tumor has neither shrunk nor grown since my treatment. My eye has improved somewhat in the periferal vision, but due to the radiation my eyes are very dry, and my vision is slightly poorer. I have had plugs put in my tear glands to make them ore fluid. My Prolactin level is 0, and I take my parlodel in increments of 1 1/2 pill at each meal(2.5mg)/2 meals a day. My appetite has diminished a little since taking the parlodel. I gained 30 pounds after my surgery and have since lost 12 pounds of that. For some reason the parlodel seems to to help me think more clearly and has helped me concentrate a little more clearly. I have requested to my doctor my cut my testosterone injection from 1cc to a 1/2cc. This helped my deal with that better. I also have reduced my Cortef from 1 1/2 pills per day to two 1/2 pills a day. This has not affected my cortisone levels at all with my regular blood tests. The hardest thing I have had to deal with is getting my claims settled with my Insurance company. I have several claims that have yet to have been processed from last summer. Simply because of red tape. Feel free to send me a E mail. It is very comforting to exchange e mail with other people with similar circumstances. Gregory R Gregory R <jurnyman_AT_soonernet_DOT_com> Midwest City, OK USA - Thu May 15 1:34:31 1997 My doctors think I've had a macroadenoma (non-functioning) for about 10 years. Might be growing at this point. Opthomologist is suggesting surgery, but I would rather try Gamma Knife. The Endocrinologist is not quite as panicky; am on Parolodel, with not much side-effects, but the tumor has not gotten any smaller yet. I am 52 years old, and my life is great. I don't want to interrupt it with this surgery, especially since I don't have any symptoms at all. I will continue to read these letters as they are extremely informative. Thanks for listening. Renee Premaza <ReneePrema_AT_aol_DOT_com.> Berlin, NJ USA - Wed May 14 22:56:02 1997 Hi!I had my pitutary gland removed completely 9 years ago. As a result, I am now panhypopitutary with diabetes insipidus. I am wondering if there is any one else out there with this medical situation? I have found those with one or the other but not both. I would like to share life experiences and perhaps gain some knowledge about what to expect as I age. I have had a few good scares and would like to avoid any more. If there is anyone else out there please e-mail me. Thanks. ps, life wouldn't be half bad if I hadn't ended up with the diabetes insipidus, all for the rest of my life. Patt <pastoll_AT_tfb_DOT_com> USA - Wed May 14 22:26:06 1997 Your site was very helpful especially the info on Parlodel. I have found information through out the net. The PTNA site is also helpful for us. Thanks so much for providing this information. Mary Compton <mcompton_AT_megabits_DOT_net> Cocoa, FL USA - Wed May 14 15:26:46 1997 I had surgery to remove a pituitary tumor, which caused acgromegaly. This was 22 years ago. It took over 10 years to diagnose my condition and as a result I am not the petite small size person I used to be. I think it is great that there is now medication available to treat this condition. Keep up the good work Fern Goldstein <csprings_AT_bellsouth_DOT_com> Coral Springs, FL USA - Wed May 14 12:41:16 1997 My 13 year old son had surgery 4/1/97 for a craniopharyngioma, there does not seem to be a whole lot of info out there about long term effects of this surgery etc. He also lost his pituatary gland and is on hormone replacement. Would love to exchange what limited info I have with anyone in similar situation. Pleae feel free to e mail me. Shawn Veytia <Chicanita _AT_AOL_DOT_com> St. Petersburg, Fl USA - Wed May 14 12:09:49 1997 My 13 year old son had surgery 4/1/97 for a craniopharyngioma there is not a whole lot of info out there for us to look at. Please feel free to E Mail, would love to share what limited info I have with anyone in similar situation. He also lost his pituatary gland, any info on long term hormonal replacment welcome. Shawn Veytia <Chicanita _AT_AOL_DOT_com> St. Petersburg, Fl USA - Wed May 14 11:58:42 1997 I have been search though to find out information on any clincal research that is being done at this time for Pituitary tumors. I am presently on Parlodel and I can't stand the side effects I have been taking it for 3 years now and they just seem to be getting worse. I am a truck driver so I am not home often If you responsed thank I will answer as soon as I can. Ruth-Anne :) Ruth-Anne Moore <alnrue_AT_pacbel_DOT_net> Colton , Ca USA - Tue May 13 22:59:28 1997 I was recently diagnosed with a pit tumor, and prolactin level of 64. I have had a terrible time with the Parodel, but hope that this will improve with time. Nice to find this information, because I have searched high and low for books etc. to learn more about this. My ob/gyn said I would probably remain on the medication for life, but it sounds as if that is not always the case. I am interested in the cost of treating, currently have insurance, but stories here scare me!!! Sara NE USA - Tue May 13 20:53:08 1997 have all of you pituitary patients checked out the pituitary tumor network ass. website. It is great because you can directly respond to whoever you want! do a web search under pituitary tumors nad it come up! I am looking at my first surgery in a month. I have collected much info on my condition. I feel it has helped me educate myself! I feel confident in my decision to go ahead with surgery. My only question is I read down the list from a Elise in Ohio about MRI assisted surgery. Is this standard or a new procedure? I plan to ask my surgeon! God bless you all! cassie pa USA - Tue May 13 10:27:30 1997 My 22 year old son is suspected of having acromegaly. The growth hormone level from his blood test is 23.4but the glucose tolerance test has not been done yet.Iwould like to here from anyone with acromegaly. what treatment did you have? What were the results?What can we expect? Any info greatly appreciated. Thanks Toni Toni Flowers <tdf4jrt's_AT_AOL_DOT_com> Al. USA - Mon May 12 16:15:55 1997 Just curious as to what was happening and decided to add my memiors to the guestbook. Good Work William Cook <DurianGoldBar_AT_WebTV_DOT_net> Sacramento, CA USA - Sun May 11 22:34:26 1997 Just curious as to what was happening and decided to add my memiors to the guestbook. Good Work William Cook <DurianGoldBar_AT_WebTV_DOT_net> Sacramento, CA USA - Sun May 11 22:24:34 1997 CUSHINGS......May 1st I had a pituitary tumor removed (transphenoidal). This is following a five year turn around for a diagnosis. I have been told my symptoms were related to all kinds of things; depression (Prozac), chronic back pain, obesity, post partum depression, etc... During this five year period I have had back surgery, pregnanacy (w/complications probably due to the Cushing's that had not been diagnosed) C-section and finally last January they removed my left adrenal gland and 11th rib thinking they had finally found the problem (another misdiagnosis). That was most likely a secondary tumor resulting from my primary pituitary tumor that was not diagnosed until this year. My symptoms reappeared in about three months after the surgery and the cortisol levels bagan to climb at my six month checkup. I did not loose any of the 80 pounds I had gained. What an ordeal this disease has caused. I have felt awful for so long now, that I don't remember what it is like to feel good. I now have a toddler whom I love very much and has been the light on many dark days, but at the same time it has been so hard to manage caring for him and my family, and myself. I am so tired and I always feel so stressed and unbale to cope these days. This is taking a toll on my marriage. I guess I just want to talk with others who have gone through all of this and can offer support. My family can't understand the feelings I have and they are not easily described unless you have felt them.. I would welcome words of advice and wisdom and also anwhere I can send my husband and 15 year old daughter for support. Thanks in advance. Bonnie Hill-Vahanian <bonitaz_AT_juno_DOT_com> Chehalis, WA USA - Sun May 11 14:24:26 1997 Hi everyone. I am an 18 year old female who underwent transphenoidal surgery in April 1996. At the time my prolactin level was at 220 and my tumor was about 1 cm. The surgery went well with minor problems and afterwards my level dropped to 9. Now, over a year later, my level has elevated to 28--a level that seems low, but I have also missed my period for 3 months and I am starting to wonder if the tumor is growing back. I have not heard back from my doctor yet, but I was wondering if anyone knew of other symptoms they have had besides missing their period. Also, I was wondering if anyone knows anything about the new drug or has had problems with bromocriptine. If anyone has any questions about the surgery, feel free to write me. Thanks, Kira Kira Lerch <klerch_AT_ucsd.edu> La Jolla, CA USA - Sat May 10 13:03:04 1997 Macroadenoma, removed 29/04/97 transsphenoidal surgery, growth hormone levels of 135, 13 normal. Acromegallic symptoms. Radiotherapy starting next couple of weeks. Operation went well, thanks to the Lord, Doctors and nursing staff of Panorama MediClinic. Problems with controlling glucose levels. Contact me if I can help. Ron Fickling <kuku_AT_fast.ca.za> Cape Town, South Africa - Fri May 9 11:37:08 1997 I am hoping for some information. I am on Dostinex, the new drug for those of us whom Parlodel gave terrible side effects. Hate to say it but the Dostinex isn't very easy on me either. I seem to be have lymph node swelling, nausea and drastic mood changes and more weight gain. The whole process, the sickness, the weight and the worry is really stressing. I have a 2 year old and a 6 year old and find it very hard to keep up with them at times. I go back to my endo soon and at this point, I think surgery would be better than feeling like this all the time. I would like to here from someone who has had the surgery to have their tumor removed. I'm curious and scared. Also if anyone else is on Dostinex, I'd like to here from you also about the side effects your experiencing. Cathy <Cathy_AT_tnproweb_DOT_com> Cumberland City, Tn USA - Thu May 8 14:42:26 1997 looking for pituitary specialist in n.y area, preferably brooklyn...3 miscarriages,prolatin level ok with medication, pregnant again and wondering whether i should stay on medicaiton... karen Yamauchi <uchisan.aol> brooklyn, ny USA - Thu May 8 13:42:06 1997 looking for pituitary specialist in n.y area, preferably brooklyn...3 miscarriages,prolatin level ok with medication, pregnant again and wondering whether i should stay on medicaiton... karen Yamauchi <uchisan.aol> brooklyn, ny USA - Thu May 8 13:41:33 1997 I am so relieved to find this web site!! I was diagnosed with a prolactin producing pituitary gland three years ago this past April. A bit scary at first. Currently I am taking Bromocriptine daily. I experience many symtoms form headaches I never used to get to extreme moodiness and fatigue. It is really hard for me since I am working full time and I am a university student destined to become a teacher. After reading many of the submissions I was amazed at how many people there are across the world that are experiencing the same problem and symptoms as I am. I have been suggested to have surgery but I am apprehensive about that thought. From my last MRI my tumour is about 7mm. I would appreciate anyones thoughts and support on this condition I possess. Amy Fraser <af96af_AT_badger.ac.BrockU.CA> Niagara-on-the-Lake, ON Canada - Wed May 7 20:08:19 1997 I have had a prolactinoma for 8 years. I had been on prolactin that whole time, but, recently (last Dec) stopped it as a trial. My last blood count was normal (!!) in April. I'm still doing well without medication :-). Just wanted to warn folks who are thinking of terminating insurance and trying to get more (I am now on my own, consulting). I was just turned down by Blue Shield. I was surprised since I run 30 miles a week...and visit a doctor (my endo) only once a year for a checkup, probably a whole lot less than most other folks. Thanks. Mike Mike Pihlman <mikep_AT_vornet_DOT_com> Tracy, CA USA - Wed May 7 17:51:19 1997 CIAO i am a 27 yr ol fem diagnosed May of 91 with 4mm microadenoma. Currently having major concerns with physicians over NON treatment I am yet waiting to receive. Hoping and praying that anyone and all will perhaps give thoughts on their current statuses and sizes of their adenomas and especially at what SIZE ARE YOUR PITRY TUMORS when the docs finally say: I think surgery is an option. ANYONE with any thoughts or comments? Please respond. THANKS and GOOD LUCK with your own Emeliana <bill_AT_cafecybernet_DOT_com> La Jolla, CA USA - Wed May 7 0:20:37 1997 CIAO i am a 27 yr ol fem diagnosed May of 91 with 4mm microadenoma. Currently having major concerns with physicians over NON treatment I am yet waiting to receive. Hoping and praying that anyone and all will perhaps give thoughts on their current statuses and sizes of their adenomas and especially at what SIZE ARE YOUR PITRY TUMORS when the docs finally say: I think surgery is an option. ANYONE with any thoughts or comments? Please respond. THANKS and GOOD LUCK with your own Emeliana <bill_AT_cafecybernet_DOT_com> La Jolla, CA USA - Wed May 7 0:19:11 1997 I am interested in articles/information concerning microadenomas and stress. Deborah Cureton/WWJD_AT_AOL_DOT_com USA - Tue May 6 17:27:18 1997 I am interesed in finding articles/information about the effects of stress on micro-adenomas. Thank you. Deborah Cureton USA - Tue May 6 17:20:36 1997 Hi, I'm a 24 year old female diagnosed in Aug. 96' with a 3mm microprolactinoma. So far the only symptom I have had is galactorrea and I am still menstruating. Luckily, I haven't had any headaches or other related problems, although I'm having a hard time losing some weight which I don't know if this is related to the pit stuff (so far its only been 10 pds.) I haven't gone on any medicine and I am quite certain I will not take the surgery route for my tumor is too small. I'd like to hear from others who have followed the be monitored very carfully and watch method. The highest my PRL levels have been is 60. Thanks I wish everyone all the best and a lot of love and support. Shirley <shirley.brockhill_AT_alphanet_DOT_net> Toronto, ON CANADA - Tue May 6 9:13:19 1997 My doctor has found a tumor on my pituitary gland, I am going to see a specialist in four days. The information available on your site has answered many questions and sparked many more. Thanks for giving me some insight. Sincerely, Bob Larson Bob Larson <BobL_AT_bakerboy_DOT_com> Dickinson, ND USA - Mon May 5 23:54:13 1997 I am a patient recovering from Cushings Disease. I had my surgery 2 years ago on March 1st. My doctors have said that I was a textbook case. My pituitary fully recovered within 8 months, much to the surprise of the doctors. I attribute a positive attitude and laughter to my speed in healing. I also had great doctors! The information regarding this disease is hard to find for the general public. I was excited to see your website with such great information. Easy to read too! I am interested in knowing if there is a support group for patients with this disease and for those who have recovered and can hold the hands of those who are just diagnosed? I would be interested in joining and or starting a group such as this one. Kelley De Lung Kelley De Lung <pdaprod_AT_earthlink_DOT_net> Anaheim, CA USA - Mon May 5 18:14:16 1997 My 22 year old daughter was just diagnosed with craniopharyngioma. We don't know much about this tumor. Any input will be greatly appreciated. If someone out there knows about a good specialist, please let me know. Thank you. Maggie E-mail: macro_AT_sj.znet_DOT_com Maggie Elias <macro_AT_sj.znet_DOT_com> Sunnyvale, Ca USA - Mon May 5 4:02:44 1997 I am totally bewildered and frustrated. I was diagnosed with a 12mm pituitary microadenoma in Feb. 1989. I have been on Parlodel since April 1989 with a ton of side effects which seem to get progressively worse. The first seven years, the tumor remained unchanged. Last year, the tumor had gone down to right around 4mm. I just had an MRI which showed the tumor is still stable at 4mm. Hurray! My endo informed me that he thought it was no longer necessary to do anymore MRI's. This rattled my security cage big time!! When I questioned him, he said "well, maybe an MRI every three or four years". He said a bi-annual prolactin test should be sufficient as well. He said I would know if I were getting into trouble, as I would start having headaches and vision problems. Totally dumbfounded, I asked him about other types of blood tests (thyroid, liver, etc.) that I have read should be done. He told me that was not necessary. He did all that at my initial visit in April 1989 and that they did not need to repeated. I would love to hear from some of you as to what kind of testing your endo is doing and on what frequency. Nancy <Jazzabella_AT_aol_DOT_com> Jeffersonville, IN USA - Sun May 4 9:58:16 1997 Pit. Tumor removed in 1993. PGerald <Kabcme_AT_ aol_DOT_com> Mt. Pleasant, SC USA - Sun May 4 8:10:10 1997 Hello anybody. I have posted a note before but have still not received the information I am looking for. I am a 56 year old female. I had a tumor removed in 90 and then it reocurred and I had another op in 94.I had radiotherapy after the 2nd op but the main question is:- Ihave lost all my sense of smell and taste has anyone had this happen to them????????? Wonderful pages these. I have learned such a lot from them. you're medical staff tell you a whole lot more than ours do Before reading these pages I had'nt a clue what my operations were called ect. Now when I go to see my brain surgeon in July I will be armed with lots of questions. Many thanks to the people who have taken the trouble to E-mail me Brenda Howard <brenda.howard_AT_virgin_DOT_net> Skelmersdale, England - Sat May 3 2:52:59 1997 I am looking for information on posterior pituitary lesions. My physicians are calling this thing an adenoma, but there is little little info on posterior masses. Roni Gray USA - Fri May 2 23:17:41 1997 Hello. I'm a 27 year old female who has taken Parlodel for 2.5 years. My prolactin level has decreased from 441 to the 40's. Very anxious to start a family as soon as the good Lord sees fit. Interested in chatting with any other who has had succcess in this area or is currently in the same boat. Tonya Walls <tjwalls_AT_usa_DOT_net> Thomasville , GA USA - Fri May 2 21:35:36 1997 I currently a first yr. resident in OH..I saw a MRI assisted pituitary surgery on a pt. I thought your pts. might be interested in hearing if Mass General is capable of this technique. Elise B. elise USA - Fri May 2 11:26:51 1997 Thank you Lord! Support has finally come. Hope to find some relief soon. Kari Ann Maurer <KMaurer_AT_AOL_DOT_com> Hopewell JCT., NY USA - Fri May 2 10:56:19 1997 Looking for help managing this strange illness. Robert H. Coe <Bob_AT_destinypds_DOT_com> Newport, RI USA - Fri May 2 2:14:44 1997 Hi, fellow veterans. Ain't it the Pits? I'm 49, male, and ten months post transphenoidal removal of a non secreting 10 mm pituitary tumor. I'm on Androderm patches for about five months now. It took a number of months after surgery to begin feeling normal, but I did. After the hormone replacement started, things got even better and the old energy returned. But, glad to say: now ten months post op, I FEEL GREAT. Like my old self. Knock on wood. I do read the notes of others who suffer recurrences and these strange "phantom" tumor symptoms after it's removed. (Sigh). Some residual symptoms that remain include occasional confusion, loss of some co-ordination (or am I just getting old?) I still get frontal headaches, but you know? It's nothing. Doesn't get in my way. Little ones. Who cares. Got my life back. My surgeon was very experienced, and that helped my confidence level. Only complaint is that he takes some fat from your hip and uses it to pack the stitches in the dura and sinuses to prevent leakage of cerebro spinal fluid. What I want to know is: why the hell couldn't he have taken it from my big butt? Love and care to all. God love ya. Brian BRIAN R. DINDAY <DINDAY_AT_PACBELL_DOT_net> San Francisco, CA USA - Thu May 1 19:36:21 1997 Hello Folks! I was diagnosed with a pituitary adenoma in 1991 after being told everything under the sun for 5 years by medical doctor's. Had surgery in '91 and was "great" -lost the weight, lost the headache and fatigue, got back my energy and went back to work for 18 months. Then wham in 7 weeks put on 70 yes 70 lbs. and had a reccurrence of all the "Cushing's" symptoms. Have not been able to work in nearly 3 years. Problem is I am unable to convince the approp medical people that I have had a recurrence and I seem to be trying to climb a mountain to get anyone to listen to me! Did not have any radiation treatment after the surgery - this may be part of the problem. They have done an MRI but did it without contrast and between scar tissue etc I'm not sure it would get the best picture - especially if the tumour is very small. Would love to be able to go to a diagnostic clinic in the US but am unable to afford such luxury! Because "evidence' can not be found on MRI my insurance carrier has also denied me benefits. Would like to converse with others who have had similar experience. judy ruttan <jgr_AT_blvl.igs_DOT_net> Stirling, on canada - Thu May 1 17:27:53 1997 I GAVE THE WRONG EMAIL ADDRESS BEFORE I HAVE HAD HYPERPROLACTINOMA SINCE 1982 AND AM A 43 YR OLD FEMALE MEDICAL ASSISTANT I HAVE BEEN TO MAYO CLINIC, UNIVERSITY OF CHICAGO AND NUMEROUS DOCTORS. I HAVE DONE A LOT OF RESEARCH. THIS WEB SITE GAVE ME NEW INFO I COULD NEVER HAVE GOT IN YEARS. I THINK I COULD ANSWER ALOT OF QUESTIONS TO KNEW PARLODEL USERS WITH QUESTIONS ABOUT THIS DISEASE; BEEN THERE, DONE THAT !! PLEASE EMAIL ME WITH QUESTIONS AND MAYBE WE CAN HELP EACH OTHER ! Pamba Schaefer <LSCHAEFER_AT_MSN_DOT_com> Lisle, IL USA - Thu May 1 16:58:57 1997 I HAVE PROLACTINOMA DISCOVERED IN 1982 I HAVE TAKEN PARLODEL 7.5 MG PER DAY SINCE 1982 WITH GOOD RESULTS. I WOULD LIKE TO TALK TO OTHERS WHO HAVE THE SAME. AND WOULD LIKE TO KNOW MORE ABOUT THE SURGERY. PAMBA K SCHAEFER <ESCHAEFER_AT_MSN_DOT_com> LISLE, IL USA - Thu May 1 11:06:20 1997 I am a 46 years old female diagnosed with acromegaly in Jan 96. Somatimedic-C level is 447. Have had MRI, petrosalsinus sampling and numerous other tests over the past year, but a tumor cannot be found that is producing the Growth harmone. Was on parlodel and then Octreotide and neither of these medicines brought the Somatimectic-C level down. My doctor in Alabama is recommending that I go to Boston, Has anyone has any experience with doctors in that area. n bevel <lbevel_AT_redstone.army.mil> huntsville, al USA - Thu May 1 9:55:09 1997 I am a 46 years old female diagnosed with acromegaly in Jan 96. Somatimedic-C level is 447. Have had MRI, petrosalsinus sampling and numerous other tests over the past year, but a tumor cannot be found that is producing the Growth harmone. Was on parlodel and then Octreotide and neither of these medicines brought the Somatimectic-C level down. My doctor in Alabama is recommending that I go to Boston, Has anyone has any experience with doctors in that area. n bevel <lbevel_AT_redstone.army.mil> huntsville, al USA - Thu May 1 9:55:04 1997 I was diagnosed with a pituitary microadnoma 2 years ago. I do not tolerate the parlodel 2.5 once a day very well. I read there is a clinical drug called Cabergoline. And can it be found in any clinical trials in Southern California? I am experiencing drug induced sjogrens, weight gain of 30 lbs. over the last two years, neck pain, lower back pain, joint pain, and most recently trouble urinating and having bowel movements during my menstrual cycles. My doctor is of little or no help. My Endocrinologist has very little time, and my OBGYN I have to book 3 months in advance. I am desperate for some support! Can Cabergoline be obtained in Mexico? I am 39 years old and feel like I am 69 years old. I want to quit the parlodel but my doctor is against it due to the fact that my prolactin level skyrockets. If anyone is experiencing the same problems, please e-mail me. Jackie <MYERSFORE_AT_AOL_DOT_com> ENCINITAS, CA USA - Wed Apr 30 23:49:24 1997 I was diagnosed with a pituitary microadnoma 2 years ago. I do not tolerate the parlodel 2.5 once a day very well. I read there is a clinical drug called Cabergoline. And can it be found in any clinical trials in Southern California? I am experiencing drug induced sjogrens, weight gain of 30 lbs. over the last two years, neck pain, lower back pain, joint pain, and most recently trouble urinating and having bowel movements during my menstrual cycles. My doctor is of little or no help. My Endocrinologist has very little time, and my OBGYN I have to book 3 months in advance. I am desperate for some support! Can Cabergoline be obtained in Mexico? I am 39 years old and feel like I am 69 years old. I want to quit the parlodel but my doctor is against it due to the fact that my prolactin level skyrockets. If anyone is experiencing the same problems, please e-mail me. Jackie <MYERSFORE_AT_AOL_DOT_com> ENCINITAS, CA USA - Wed Apr 30 23:48:37 1997 I was diagnosed with a pituitary microadnoma 2 years ago. I do not tolerate the parlodel 2.5 once a day very well. I read there is a clinical drug called Cabergoline. And can it be found in any clinical trials in Southern California? I am experiencing drug induced sjogrens, weight gain of 30 lbs. over the last two years, neck pain, lower back pain, joint pain, and most recently trouble urinating and having bowel movements during my menstrual cycles. My doctor is of little or no help. My Endocrinologist has very little time, and my OBGYN I have to book 3 months in advance. I am desperate for some support! Can Cabergoline be obtained in Mexico? I am 39 years old and feel like I am 69 years old. I want to quit the parlodel but my doctor is against it due to the fact that my prolactin level skyrockets. If anyone is experiencing the same problems, please e-mail me. Jackie <MYERSFORE_AT_AOL_DOT_com> ENCINITAS, CA USA - Wed Apr 30 23:46:58 1997 My 42-year-old husband has a prolactinoma. He has been on parolodel (9 months), permax (8-9 months), and now, dostinex (1 month). He has experienced all the symptoms---nausea/ vomiting, fatigue, sinus problems, confusion, memory loss, etc. He has very little tolerance for stress. We have not noticed a significant difference in symptoms since starting the dostinex, but maybe it will improve with time. He has been unable to work for almost a year due to the fatigue, memory loss, confusion, etc. I am interested in corresponding with other men who have prolactinomas. I am also interested in any and all information on depression and mood swings. Please e-mail me. Thank you. with depression and mood swings (anger/agitation, very emotional). Sue Rose <Rose5Cat_AT_aol_DOT_com> OR USA - Wed Apr 30 21:20:33 1997 My brother had a pituitary tumor removed 15 years ago,he has now been experiencing severe eye problems particularly double vision.Could there be a correlation? Amanda Rivas <arivas1_AT_ix_DOT_netcom_DOT_com> USA - Wed Apr 30 19:23:51 1997 My daugter was diagnosed with a prolaction producing pituitary tumor 6mm. on 5/96. She is 19 and has been on Parlodel 2.5 mg 3 times a day since her diagnoses. She tolerates it well with little side effects. She started having normal menstral cycles about 8 months ago. Her doctor said that they may take her off the parlodel in about a year and see if she keeps menusrating, and if she does she can stop taking parodel. He also said there is a slight chance the tumor may shrink or even go away. IS THIS POSSIBLE?? I would be thankful for any information you could share with me on this. PAULA <TFELLERS_AT_GTBEND_DOT_com> GT BEND, KS USA - Wed Apr 30 15:21:56 1997 This is a test. n bevel <lbevel_AT_redstone.army.mil> USA - Wed Apr 30 14:48:35 1997 I put the wrong address. sorry. I hope to hear from you soon. Michelle Alaspa <malaspa_AT_mcc.edu.mn.us.> mn USA - Tue Apr 29 15:17:23 1997 I was diagnosed with a pituitary tumor in July of 96, and am now doing a research paper on my tumor. Your research has helped me, and I would love to thank you. I would also like to get info from anybody with a tumor. I would greatly appriciate it. Thanks again. Michelle Michelle Alaspa <ma;aspa_AT_mcc.edu.mn.> mn USA - Tue Apr 29 15:14:52 1997 I would like to talk to someone in this area about finding a good Dr. who treat pituitary tumors. I was told that I have a tumor several years now and I can't take the parlodel. I really don't have a Dr. at the present time .Dr left the area. It has been a problem finding someone who don't talk down to you about this. I am really getting tried of the search. Ruby <ReJewels_AT_aol_DOT_com> Ft. Worth, Tx. USA - Mon Apr 28 23:36:19 1997 I am having surgery in "a couple of weeks" for a macroadenoma 13x10x10 whcih has invaded the cavernous sinus,I am ready for the surgery but I am still scared to death.Any and all info would really be appreciated,Phyllis Phyllis Blake <Blakepb_AT_aol_DOT_com> Tn USA - Mon Apr 28 9:53:12 1997 MEDICAL STUDENT: SEARCHING FOR INFORMATION ON PITUITARY DISORDERS AND DISEASES FOR MEDICAL TERM PAPER/REPORT! LINDA L. BILLSBOROUGH LINDA L. BILLSBOROUGH <RIPCORDPEB_AT_AOL_DOT_com.> SOUTH BEND, IN USA - Sun Apr 27 21:28:29 1997 I sent a previous message but typed in the wrong e-mail address. I would like to know if there are any other medications for microadenoma's besides parlodel? According to the doctors around here there is nothing else besides Parlodel, but from reading some of the other profiles it sounds like there are. I would really like to know, because I have a very hard time taking Parlodel. I had my tumor removed because I couldn't take the medicine. If anybody knows of any please e-mail me. Thanks Angel Neidl <gottaeat_AT_dataplusnet_DOT_com> Manitowoc, WI USA - Sun Apr 27 18:43:23 1997 F/35 w/ Diabetes Insipidus since 1970 (pituitary tumor induced). Welcomes e-mail and is available to inquiry. Cherri Poe <cpoego_AT_aol_DOT_com> Bellevue, WA USA - Sun Apr 27 18:42:11 1997 I have already put a message in but I forgot to ask an important question. After my second operation I lost all sense of taste and smell. If anybody has had a similar experience please e-mail me Brenda Howard <brenda.howard_AT_virgin_DOT_net> Skelmersdale, England - Sat Apr 26 15:15:45 1997 I have had two operations for a pituitary tumour one in 1990 the last one in 1994.I had radiotherapy treatment after the last If anyone has any questions do e-mail me. I am a female age 56. Brenda Howard <brenda.howard_AT_virgin_DOT_net> Skelmersdale, England - Sat Apr 26 12:49:19 1997 I was diagnose with a pituitary tumor a year ago, I am on parlodel 2.5mg twice a day. I don't seem to have any side affects except fatigue. Dennis Kleven <dklev_AT_prodigy_DOT_net> Mequon, WI USA - Fri Apr 25 22:12:18 1997 I have a few concerns about my health. I have had a tumor removed from my pituitary gland 1 1/2 years ago. I've lost my insurance since my surgery, and I can't afford to go back to my neuorsergeon for my 6 month/1 yr./or 2yr. check-up. I am just hoping that maybe someone might know of some funding, or might have some ideas that might help me. If anyone can help, or would like to talk, just let me know. Kim Clark <Turtlebee_AT_AOL_DOT_com> Cape Canaveral, FL USA - Fri Apr 25 18:21:33 1997 Hi, I'm 33 year old female and I have been diagnosed with a microadenoma tumor, 7x8mm in size. I'm currently taking Parlodel 2.5 mg a day. I take them at night to ward off some of the side affects. Not too much info from my endo, I really greatful for this site and all of your assuring comments. I had a little girl (Katie) 2 yrs. ago. Thats when all of this started. My doctor thinks I might not be able to have anymore. I sure hope that he's wrong. Anyone with some info on this type of tumor, please write me and let me know how you're coping and what kind of things you're feeling. I feel like I'm the only one that knows what I'm experiencing. This is a great site. Thanks Armida Bandin-Ibarra <aibarra_AT_tempe3.k12.az.us> Tempe, AZ USA - Fri Apr 25 15:07:58 1997 I found the information suplied very helpful. I have a prolactinoma and have been taking bromacriptine for 4 years. I am beginning to have muscular problems (weakness) and I am constantly looking for answers. Rosalie Hurley <rhurley_AT_shore.intercom_DOT_net> Princess Anne, MMd USA - Fri Apr 25 9:47:21 1997 none J. P. Koshollek <103263,2002_AT_Compuserve_DOT_com> Stevens Point, WI USA - Thu Apr 24 12:47:32 1997 I have recently been diagnosed with hyperlactemia, with a prolactin of over 200. I was on Parlodel, with awful side effects and NO results. Now, I am beginning to take Dostinex. I am told by my doctor that if this medication does not work then surgery is my next alternative. I am very nervous about the prospect of surgery. I did not realize that there were so many people out there who had this problem. It would be very nice to have someone to talk to about this. My family doesn't understand the stress and the feeling that I am experiencing with this dieseas. cathy_AT_tnproweb_DOT_com Cathy <cathy_AT_tnproweb_DOT_com> Dover, Tn USA - Wed Apr 23 22:48:25 1997 I have been diagnosed with Hyperprolactinemia as a result of a 10mm Prolactinoma. I am a 49 year old male. The diagnosis was based on blood prolactin levels of 230, and 2 MRI's. I have been on Parlodel for 30 days now and another blood test has shown prolactin to be at 7. In 5 months I will have another MRI to determine if the prolactinoma has receded. If there are other males with this type of history, I would be interested in communicating with you to learn more, and compare results. I have had difficulties with the Parlodel i.e. headaches, nausea, nervousness, and aggressive tendencies. Paul W. Martens <pmartens_AT_raychem_DOT_com> Pleasanton, CA USA - Wed Apr 23 17:01:44 1997 I've read everything including the archives and may have some answers for a few of you regarding medication problems and pregnancy and share a few of my experiences. I'm now 31 years old and after trying to conceive for 8 mos. with no luck in 1994, I had some blood work done that showed I had a high Prolactin level of 85. Was told this was the problem. A CAT showed I have a secreting pituitary tumor/ Prolactinoma.I was put on Bromocriptine (Palodel) and after 4 months was PG. (I took the medication in half dosages for a few weeks slowly increasing the amount to get use to the stuff. It's very powerful. I almost fainted upon standing. I took too high of a dose right away. -My Fault) A LITTLE HISTORY: When I was around 16 years old I wasn't getting regular periods.(one every 3 to 6 months or sometimes every 2 weeks.) Without looking into it, my family doctor put me on birth control pills to "Regulate" my cycle. It worked, but the way I see it, I was misdiagnosed for the last 13 or so years. And all that time my pituitary was never receiving the right hormones and never will. (At one time, I went to the doctor for a possible bladder infection. When they called me they said "Congratulations" your expecting.(I was only 21 yrs old)My first response back to them was: "How did that happen?!!" "I went in for a bladder check..." Apparently they do several tests on urine and a pregnancy test was one of them. I went in for a recheck... it was negative - with no explanation as to why that happened at all.) Imagine my boyfriends reactions, (now husband). What I have learned since is "Prolactin" is the hormone that tells your body you're pregnant. (Prolactin produces the breast milk) my body apparently showed somthing in the urine, or maybe I even had some blood work done... I can't remember, but there was an abundance of "Prolactin" when the tests came back that in all rights showed I was pregnant. but I wasn't. I will be on medication "for life" I'm told to control the prolactin. My brain will not do it for me. I feel, if caught earlier, the prolactin may not have gotten so out of control to develop the tumor. Once pregnant, I went off the Bromo. Nursed for 6 mos. then back on Bromo. It only took 2 months to get pregnant the second and last time. I'm now 6 months PG and have been experiencing mild to severe headaches, nausea, blurred and eye problems. OB doctor suggested an MRI to see if the tumor had grown. But to our liking the tumor had shrunk a bit.(This I'm told can happen during pregnancy-it also shrunk with the first PG but grew again after preganacy)Chalking up my symptoms as regular pregnancy problems this time around. One thing I do want to say is that, when on the medication, once the beginning side affects go away, I do feel more energetic, smarter-(remember things better), less tiered, and enjoy being more "active" with my husband(!!!). It's amazing! Who would ever thought it took something in your brain to get pregnant. Imagin the money I could have saved on birth control over 13 years!!!! My outlook on all of this is that I've been educated enough that I know I can live with this. I will definatly be monitoring my children's health that much closer knowing this can be hereditary. I will continue to have CAT/MRI check ups over time to keep an eye on this thing. Not dwelling... -Thanks for listening. Sherry <sseeger_AT_pillsbury_DOT_com> Minneapolis, MN USA - Wed Apr 23 15:15:33 1997 Hi My girlfriend was recently diagnosed with Prolactinoma after severl months of not having her period. Her Prolactin level is 40. The endo says (without MRI) that the tumor cant be seen and we have caught it at a very early stage. The endo prescribed .05 mg Permax daily, which has been causing my girlfriend to miss work because of severe nausia (shes a primary school teacher). Do these severe symptoms decrease with time? Shes been taking the drug for about two weeks now. We have the second appointment with the Endo in two weeks, and now that we know a little more going in, will try to get Cabergoline (sp) perscribed. If any of you have had similar experiences, you can email Jen directly at the address below, but please no horror stories, its a little early in the game for that and I dont think it would be great for her moral...then again, what do i know, im the one with the condition. Just use your judgement, but support would be WONDERFULL! Peace and love, and best of luck to you all.. J Jeff <jstefani_AT_sutter.scu.k12.ca.us> ca USA - Tue Apr 22 13:47:05 1997 Does anyone out there have any suggestions and/or success using holistic therapy for the treatment of hyperprolactinemia or microprolactinoma? Would appreciate any feedback. I have had this problem for over 16 years and no surgery as yet since the tumor is relatively stable. My prolactin level is at 126 and I'm sick and tired of being sick and tired. Thanks! Mary Ann <Pdgtn2_AT_aol_DOT_com> PA USA - Tue Apr 22 13:03:07 1997 I am 23 years old. In 1993 I was diagnosed with a macro- prolactinoma. After four years of treatment with Parlodel (bromocriptine) and Norprolac (quinagolide) my tumor has become larger. Next month I will go to hospital for trans- fenoidal surgery. When I was diagnosed with a prolactinoma, I was very worried and I found it's very hard to find information about the disease. I am looking for people who like to share their story with me, maybe we can support eachother. I live in The Netherlands, but I don't mind if you live in the States or in another country. Hope to hear from you soon! Eva Eising <eaeising_AT_worldonline.nl> Assen, The Netherlands - Mon Apr 21 17:50:50 1997 My mother has had 5 operations regarding prob with Pituatary, I am looking for some www sites which can proived info regarding this. Any Ideas where to look.Thanks Andrew Hughes <106360.660_AT_compuserve_DOT_com> St Ives, Engalnd - Mon Apr 21 16:43:37 1997 I am 31 years old, recently diagnosed with a 1cm macroadenoma, which is believed to be non-secreting (am taking more tests to confirm this). It was discovered due to amenhorrea, galactorrea and, initially, elevated prolactin level (52), although a repeat test one month later indicated normal prolactin level (17) but low growth hormone and estrogen. Although my endo appears to be very anti-surgery, I am not convinced this tumor shouldn't be removed. I am interested in hearing from others who have been treated for non-functioning macroadenomas, their course of treatment, experiences and recoveries, etc. Also, any experiences with pregnancy and nonfunctioning macroadenomas? Thanks... Mary Kay <mary_AT_zjs_DOT_com> Milwaukee, WI USA - Mon Apr 21 14:57:09 1997 My question is, is the lack of sleep and difficulty breathing a symptom experienced by anyone with Cushings Disease? None of the things I've read say anything about those symptoms. The doctor said it could possibly be caused by Cushings Diease. My mother is in very bad shape and I'm afraid that she might not actually survive an operation, especially if it doesn't ultimately cure the problem. If you can help at all, I'd appreciate it. Bonnie McDonough bmcdonou_AT_cgi_DOT_com Bonnie McDonough <bmcdonou_AT_cgi_DOT_com> Pittsburgh, Pa USA - Mon Apr 21 12:58:59 1997 Last night on the Learning chanel,cable TV,their program, "The operation" was the Pituitary! /very informative if you happen to be an acromegaly patient. Has anyone taken new approved drug, cabergoline ? Used for high prolactin levels/interested in side effects/I may need to be on this in very near future. Let me know,thanks alot. deb holbein <GHolbein_AT_cris_DOT_com> Bay City, Mi USA - Sun Apr 20 21:05:13 1997 Last night on the Learning chanel,cable TV,their program, "The operation" was the Pituitary! /very informative if you happen to be an acromegaly patient. Has anyone taken new approved drug, cabergaoline? Used for high prolactin levels/interested in side effects/I may need to be on this in very near future. Let me know,thanks alot. deb holbein <GHolbein_AT_cris_DOT_com> Bay City, Mi USA - Sun Apr 20 21:01:30 1997 Here I am, back again! I'm 2 months post-op from surgery for Cushings and feeling better but wish I could feel ALOT better. I'm writing to hear from anyone who's been on Prednisone for any length of time. I may be on it for 6 months to a year, and to a diabetic, that is just awful. I've also heard long term use can cause cataracts and/or glaucoma. I'd love to hear from anyone with any experience with Prednisone. Thanks for the support! Nancy Morin Nancy Morin <nmmorin_AT_aol_DOT_com> Hooksett, NH USA - Sun Apr 20 20:40:19 1997 great quentin m hardage <hardageq_AT_datasync_DOT_com> pascagoula, ms USA - Sun Apr 20 20:18:39 1997 My 11 year old daughter has been disabled since birth and only recently has been diagnosed with Chorioretinopathy & Pituitary Dysfunction. Basically there appears to be a number of seperate diagnostic problems, eyes, growth and ataxia to name but a few! She is the only patient in the UK and consequently I have began to look on the internet in order to gain a greater understanding of the syndrome and maybe meet others like Shanna!!Any assistance would be greatly appreciated. Olga Gilling <olga.gilling_AT_cableinet.co.uk> TROWBRIDGE, ENGLAND - Sun Apr 20 11:44:56 1997 I am 30 yrs old, female, and have Acromegaly. Jan. 1996 I had transnoidal brain surgery to remove a pituitary tumor. It seemed a success. I had only a week to adjust to the fact I even had a tumor and acromegaly, everything went so fast. The gh level and turmor returned in Aug 96 and radiation was done for 6 weeks. Now, 4/97' the gh level is up again and a MRI is schedualed for this week. I started on the oral drug, so far so good. OK- my concern - I want to become pregnant, I waited through my twentys to "grow-up" myself first, but am more then ready now. Unexpectedly I did get pregnant in Oct 96, but the fetus died after 6 weeks. If anyone has any personal experience with Pregnancy and Acromegaly PLEASE WRITE!!!!!! Thank You Nancy Hooper <Maxy_AT_megabytecoffee_DOT_com> Long Beach, CAc USA - Sun Apr 20 0:39:33 1997 An MRI indicates I have a Pituitary MicroAdenoma. My HMO ran blood tests and determined it is a non-secreting tumor, therefor, they referred me to a NeuroSurgeon and not an Endocronologist. Does an HMO have the knowledge to thouroughly check to see if I have a non-secreting tumor? Should I be consulting an Endocronologist first and then they can refer me to a NeuroSurgeon? Also, from what I have read it seems if a tumor can fully be removed then it is likely NOT to regrow. Therefor, since I have a small tumor wouldn't it be better to have it removed? I do not fear surgery, I fear being on medication for the rest of my life and having the tumor get larger causing more permanent damage. I currently have vision problems in my right eye, nausea (sp?), and mood swings (sometimes RAGE). Any experience out there? I am scheduled through my HMO to see a NeuroSurgeon this week who does not specialize in Pituitary Tumors! Jodi Jaap <jodij_AT_mechp.seaslug.org> Bothell, wa USA - Sat Apr 19 16:26:05 1997 I had a craniopharyngioma resected 5 years ago (1992). Since then (in addition to having no pituitary function) I have had difficulty sweating (and am therfore usually very hot and no doctor has been able to 1) help or 2) explain why. Basically when they cut things out they might have damaged an area of the hypothalamus which affects temperature regulation. Please e-mail me if you have this problem too. Frank <ftg_AT_adcomsys_DOT_net> Seattle, WA USA - Sat Apr 19 14:49:36 1997 I forgot to add my e-mail address to the previous message. (See next message) Roxy <Roxy_AT_MNOpera.org> USA - Fri Apr 18 14:12:26 1997 I am presently taking 2.5 mg. Parlodol per day for a prolactin-producing pituitary tumor. I have been it for about 10 -11 years now. Wondering if anyone out there has experienced any long-term side effects. I am feeling much better than I did before going on the drug. I had a constant headaches everyday, with some extremely severe migraines during certain times in my cycle (that is, is I HAD a cycle). Within days of going on Parlodol, my headaches disappeared, and only returned when my endo. tried to take me off the drug for a breif time. My prolactin level has stayed between 20-45 since I've been on it. Right now my quality of life is very good, though I would like to take off some of this excess weight. I'm just worried about the lonf-term stuff down the road. I'm also thinking about getting pregnant, and wondering if anyone has had difficulties with that. Roxanne Stouffer Cruz USA - Fri Apr 18 14:03:35 1997 I can not believe I found so many people that have the same problems as I do. I was diagnosed with a pituitary adenoma about 8 years ago. Since then I have had surgery to remove my tumor,but it grew right back. I am on parlodel 10mg a day and I really can't handle it. I get extremely tired and that's not the easiest thing to deal with when you have a small child and a business to run. I have so many other problems I'm constantly at the doctor trying to figure out what they can do for me next. I just went through some sleep studies because I am extremely fatigued all day long(only to be worsened when I take my afternoon dose of Parlodel). My sleep studies were normal, so now maybe they're thinking I'm depresses. Now I'm on Redux to lose weight (maybe that will help with depression) Is there anybody who couldn't tolerate Parlodel that found another medication to go on? Is mood swings a side affect of Parlodel if so nobody ever told me that. It's really great to get this out to people who understand the problems. My family just doesn't realize how awful I feel at all times. I wonder if I'll ever feel good again. I also had some of my parathyroid glands removed because of high calcium levels. They say I have a genetic disorder called MEN1. Even though no one in my family has any such thing. Anybody else out there with such a diagnoses. Anybody with the same feelings and problems? Love to hear from you. Angel Neidl <gottaeat_AT_dataplus_DOT_com> Manitowoc, WI USA - Fri Apr 18 12:34:35 1997 Stop by Kims Marrow Links. I have lots of cancer info. Kim Sedlacek <sedlacek_AT_gte_DOT_net> Tacoma, WA USA - Fri Apr 18 10:23:46 1997 Tumor developed folowing Head trauma. Severe headache (uncontrolled w/ Rx) extended Spells of Sleepiness Mild seizure activity Severe weight loss Hypoglycemic Liver and Kidney failure (recovering from total system failure) No Diagnosis other than pituitary tumor/endocrine problem Currently case study at Vanderbilt University Med. Center Michele D. Neubauer <chris.neubauer_AT_btrinc_DOT_com> Knoxville, TN USA - Wed Apr 16 22:00:22 1997 i'm looking for specialists to treat Cushings Disease-- please send any pertinent info Thanks! 9419 dixie hwy fairhaven mi 48023 l. snauwaert fairhaven, mi USA - Wed Apr 16 17:37:44 1997 Has anyone any experience of csf leaks? I am having some very wierd tingling headaches and my nose is still running a lot seven weeks post op. Maybe I'm just paranoid. R Atkinson <AtkinBen_AT_aol_DOT_com> Oxford, UK - Mon Apr 14 17:31:24 1997 I was diagnosed with a prolactinoma and am not taking any medication. I am trying to treat it holistically. If anyone knows of any holistic treatments for this problem please contact me. Roberta Braun Shapiro <rbshapiro1_AT_aol_DOT_com> Manalapan, NJ USA - Mon Apr 14 17:18:13 1997 I am interested in information on "Cushings Disease", because my wife appears to have most of the symtoms. Murphy Gurganus <mgurganus_AT_mindspring_DOT_com> Raleigh, NC USA - Sun Apr 13 20:08:26 1997 29 yr old female diagnosed with Pituitary MicroAdenoma from MRI scan. Had baby 6 months ago. Suffered from sever vertigo in lying down position for 7 mos. Had MRI just before baby was born showing enlarged pituitary. Another 2 weeks ago after finished breast feeding which found the tumor. Seems like pregnancy can increase the symptoms of these tumors based on peoples accounts. I'm not sure what to expect. My HMO wants to send me to a nuerosurgeon. But I think I should see a specialist. I'm glad to find so much support on the Internet. This appears to be a common problem (tumors). Jodi Jaap Paine <jodij_AT_mechp.seaslug.org> Bothell, wa USA - Sun Apr 13 16:27:58 1997 Does anyone out there know if a microprolactinoma can cause sinus problems? Thanks! Mary Ann Mary Ann <Pdgtn2_AT_aol_DOT_com> PA USA - Sat Apr 12 14:49:20 1997 Recently diagnosed with a micropituitary adenoma. Am on 2.5 mg of Parlodel w/few side effects. Am trying to start a family and am scared to death with this diagnosis. The tumor is 5 mm and prolactin level is 91. Any support would be greatly appreciated Lynn JOhnson <ljohnson_AT_heartctr_DOT_com> Huntsville, AL USA - Thu Apr 10 16:23:17 1997 My husband has a secreting prolactining tumor in the pituitary gland. Does any one have or ever had experience with this. KATHLEEN <NERDNETTE_AT_AOL_DOT_com> TUCSON, AZ USA - Wed Apr 9 13:11:44 1997 Suspect I might have pituitary tumor resulting in acromegaly. Anyone with info/advise on this condition please contact me. Thanks. Violet Marie Parks <john_AT_netrunner_DOT_net> HOMESTEAD, FL USA - Tue Apr 8 1:11:31 1997 I'm a 35-year old female with multiple symptoms. All doctors agree that I have an endocrine disorder, an abnormal pituitary gland (per MRI), and intermittent abnormalities with various pituitary hormones. They also all agree that I have an unspecified connective tissue disorder, MVP (mitral valve prolapse), and gynecological problems (ie., uterine fibroids). I have seen neuroendocrine experts and have had various testing (ie., MRIs w/gadolinium, petrosal sinus samplings, 24-hr urine collections for cortisol, etc.). Still, after eight years of testing, no diagnosis. Without a diagnosis, there is no treatment, and without treatment, I am left with the same symptoms and/or the development of new problems (ie., osteopenia, reversal of normal urination pattern). I'm wondering what will happen next. Potential diagnoses have included: Intermittent Cushing's, Cushing's disease (pituitary tumor), Cushing's syndrome (ectopic tumor), no Cushing's -- just "an endocrine disorder", pituitary tumor vs. no pituitary tumor, abnormal vs. normal hypothalamus (per MRI), polycystic ovarian disease, etc. I do not look "Cushingoid" (no stretch marks, no significant weight gain, no buffalo hump, etc.). I have always been thin and unable to develop muscle mass. I do have intermittent elevations of cortisol and prolactin, hirsutism, bloating after some meals, and water retention at times (sometimes as much as 9 pounds overnight), increased loss of padding on hands and feet, decreased energy, sleep problems, increased sensitivity to light/glare, sensitivity to odors/chemicals, intermittent low-grade fevers, etc. I don't know what to do next. Does anyone have similar symptoms? Any problems in reaching a diagnosis? What doctors and/or testing would you recommend next? Any info on "intermittent Cushing's"? Any additional comments would be greatly appreciated. Thanks! Vicki <NoMedDx_AT_aol_DOT_com> USA - Mon Apr 7 19:10:05 1997 I am currently taking Permax to lower my level of prolactin. It's been about nine months now since I found out that I had a prolactin producing pituitary tumor. I have the typical problems with mood swings and headaches and would like to hear from others who are having the same problems. Is there natural ways that any of you have found to help with these problems? Also, are any of you having problems getting those extra pounds off, I gaind about ten pounds before I found out that I had a tumor. It seems that somedays I go minute by minute, I'm just glad my husband and son are understanding people. But I do worry how my aggression will effect my 5yr old son. Nancy <Nkayw_AT_AOL_DOT_com> IL USA - Mon Apr 7 18:06:01 1997 I haven't posted in a while. I had my first transphenoidal surgery on 12-30-96. I had a csf leak and had repair surgery on 2-3-97. I again had another csf leak and had another repair surgery on 2-20-97. At this time it was determined that the cranial pressure was very high in my head. On 2-24-97 I had a vp shunt put in. It means that I now have no hair but I also have no headaches!!! I am extremely tired a lot and am having the usual hormone imbalances, but I am glad that I had the surgery. I had it done at UPMC in Pittsburgh. I will see the doc again in two weeks for a follow up MRI. I haven't returned to work yet, but I did have four brain surgeries within two months. I hope to get back to life and living well within the next two months. My husband and I will celebrate our 15th wedding anniversary in June and I hope to be up for a helluva party. I also would like to start a family soon. The best advice I can give is to believe in yourself--you know when something is wrong. I sympathize with those who talk of the uncontrollable rages and mood swings. I can say that I am much better in this respect since surgery. God Bless!!! Lisa Dupree <mllmdupr_AT_westol_DOT_com> North Huntingdon, PA USA - Sun Apr 6 15:17:26 1997 I have Cushings. Have had two transsphenoidal adenectomies in February 1997 but am still over producing cortisol and awaiting radio therapy. I suffer with diabetes insipidus and would like to hear from anyone with this condition as I am experiencing difficulty with desmopressin tablets. Rachel Atkinson <AtkinBen_AT_aol_DOT_com> Oxford, UK - Sat Apr 5 15:15:03 1997 I had a bilateral adrenalectomy in 1972 after diagnosis of Cushings Syndrome. CAT scans were in infancy, no pituitary tumor could be detected at the time. Eight years later CAT scans revealed that I had had a large pituitary tumor, but after removal of the adrenal glands the tumor atrophied, leaving an empty sella and panhypopituitarism. I am happy to report that besides severe osteoporosis, I am quite healthy today, after 25 years of replacement hormones. I hike in the mountains and do almost anything anyone else my age would do! Elizabeth Brown <alpineflwr_AT_aol_DOT_com> Wildwood, MO USA - Sat Apr 5 13:32:07 1997 I was just raeding on the PTNA web site about weight gain. Is this a common side effect from Parlodel or is it because of irregular menstrual cycles? Has anyone else had this problem and found ways to get around it? Shirley <shirley.brockhill_AT_alphanet_DOT_net> Toronto, ON Canada - Fri Apr 4 9:35:55 1997 I just found some news on treatment for hyperprolactinema posted from the pituitary network association.DOSTINEX RECIEVES FDA CLEARANCE.It is available now and joins Bromocriptine as the only other drug product indicated to treat hyperprolactinemia. It is more conviient to take,(two doses per week).It is more effective in test comparison to bromocriptine.29% of patients experienced nausea with Dostinex, compared to 43% of those taking Bromocriptine. Ask your Docter about it. It is manufactured by Pharmacia & Upjohn.I hope this info can help.I any one has any new info on cushings patients dependent on cortisol please contact me.Im in alot of pain. It's been three weeks since my surgery.Im getting worse instead of better.My cortisol levels tested low after surgery.so if I'm taking the rite dosage,I should be feeling better I think.I hope their is some one out there who has been where I'm at to talk to. Teresa <sully_AT_ismi_DOT_net> Brighton, MI USA - Thu Apr 3 21:48:21 1997 My eldest daughter, nearly 12, has been told she won't grow much over 5ft, with a suggestion the replacement HGH therapy may be a solution to reaching the family average 5'8" height. Does anyone have experience in applying treatment in a pre pubescent girl. Paul <pwiz_AT_ezinet_DOT_com.au> Australia - Thu Apr 3 9:47:47 1997 i had a pituatory tumour removed on 01/10/1996 and I am better now, just picked up aa lot of weight from the medication JANINE MICHEL <michelj_AT_sabc.co.za> Benoni, gauteng south africa - Thu Apr 3 6:32:50 1997 I already bookmarked your site. Thank you ! Maryantoro Oemardi <endokrin_AT_indo_DOT_net.id> Jakarta, Indonesia - Wed Apr 2 6:15:39 1997 If anybody has had a childhood CRANIOPHARYNGIOMA, please e-mail me at SPBSeattle_AT_aol_DOT_com. Thanks. Steve Steven Browning <SPBSeattle_AT_aol_DOT_com> Seattle, WA USA - Tue Apr 1 22:27:11 1997 Excellent! I wish there was something like this when I had my first surgery back in 1987. My prolactoma is back again. It is nice to know of what more to expect. Thank you one and all! Gary K. Thomas <indian_AT_sgi_DOT_net> Connellsville, PA USA - Mon Mar 31 18:34:04 1997 I was just recently diagnosed with a macro non-functioning pituitary tumor. The physician who diagnosed my problem (prolaction level of 35 and MRI showing 2.5,1,3.5 cm tumor) has recommended that I have the surgery at NIH or the University of Virginia (we live in SC). In the meantime, I need to begin to plan for my family (very supportive husband, a five year old, and 2 yrs old twins). We have no family who lives close by and can help out. How long is one usually hospitalized? What can I expect after surgery- I am told I will be extremely tired. Right now I feel find except for occasional headaches which medication seems to control. Also the possibility of being out of control emotionally (depres- sion, mood swings)is very frightening to me. I can be reached at baldwin.guydea_AT_worldnet_DOT_com Dea <baldwin.guydea _AT_worldnet_DOT_com> north Augusta, SC USA - Mon Mar 31 14:54:56 1997 New to this page! 37 y.o. male with acromagaly. Had transphenoidal surgery 11/95. Radiation 3/96. On Parlodel and Octreotide. Despite all interventions the levels remain high. Still have all the miserable symptoms of fatigue, and terrible muscle and joint aches. Interested in talking to others with similiar experience. Thanks! Michael <met1_AT_mail.gte_DOT_net> Everett, Wa USA - Sun Mar 30 12:55:28 1997 I have hypopituitarism. I have come to this site to learn more abou this condition. I would greatly appreciate any and all data you can give me. I am also diabetic which complicates the problem. Thnk you for having this rrsource available on thr Internet. Michael A. Margiotta <MikeyAM_AT_aol_DOT_com> Menands, NY USA - Sun Mar 30 7:38:29 1997 Loni:I tried to e-mail twice,unsuccesful I am 35 and have two children.I would like to offer support.I hope you will continue to follow up with your Dr. If you would like to try another specialist I have an excellent resource book,published by the Pituitary Tumor Network Association.My phone is (810)227-5615 Teresa Sullivan <sully_AT_ismi_DOT_net> Brighton, MI USA - Sat Mar 29 9:58:21 1997 I had to try again, my e-mail address was missing.Teresa.If there's any cushings patients out there, love to hear from you. Teresa Sullivan <sully_AT_ismi,net> Brighton, MI USA - Sat Mar 29 6:41:02 1997 I have cushings disease. I am 35 with two children.I had a Transphenoidal adenectomy March 10,1997.It was succesful!I have low cortisol levels now.I would love to chat with others like me. Teresa Sullivan <sully_AT_ismi_DOT_net> Brighton, MMI USA - Sat Mar 29 6:29:08 1997 In 1986 I was diag. with 8mm microadenoma. I had just gotten off of the pill and had no periods. I was put on bromocriptine and the tumor shrank. I got pregnant and had a healthy girl in 1987. Back on the bromo. and had periods normal. 1989 I had another baby. My Dr. just kept a close eye on me while pregnant because they always take me off bromocriptine(parlodel) when I'm pregnant. I have problems with nausea after taking parlodel. It's OK until I forget to take it a day or so, and then I have to go back to a lower dose for a week or so until my body gets used to it. I had a third baby 4 years ago in March of 1993. I have had a terrible time with memory and I kept forgetting to take my medicine. I just read something that said osteoperosis is a real high possiblility if I don't take my parlodel. Has anyone had this problem? I am 37 now and haven't had periods for a couple of years. Other than that I have no symptoms. I have only had hot flashes few and far between. E-mail me if you have any info. I haven't been to see my endocrinologist in a long time. I know she will really be upset with me for not taking the parlodel. Loni <LMontal_AT_aol_DOT_com> San Jose, CA USA - Sat Mar 29 1:13:29 1997 Just wandered into this.Can someone out there with experience tell me how they felt with a pituitary non- secreting macroadenoma and what they had done.I'm scared to death,not to mention my husband and adult children.My symptoms are terrible right-sided face pain and I am so tired all of a sudden.Thanks Phyllis Blake <SBQL71A_AT_Prodigy_DOT_com> Clarksville, Tn USA - Fri Mar 28 11:02:27 1997 I am a 53 yr. old female diagnosed in 1981 with hyperprolactinemia that over the years was found to be caused by a minutemicroadenoma in lower lateral left part of the pituitary. My prolactin levels when diagnosed were around 90 to 100. After starting parlodel in 1983 my levels flucuated from 39 to around 79. After 13 years of parlodel I suggested to my doctor that I go off it as I was sick of the stomach problems and fogginess. My levels are now up to 126 and my short term memory is worse than before (my doctor claims memory problems have nothing to do with high prolactin). In October an MRI showed and increase in small white dots in the white matter of my brain bilaterally. The neurologist said they were consistant with aging or migraines. Does anyone out there have a similiar problem since being diagnosed with a prolactinoma? I am also on synthroid and prempro. This is a very informative site! Mary Ann <Pdgtn2_AT_aol_DOT_com> Wilkes-Barre, PA USA - Wed Mar 26 17:44:36 1997 Any info on alternatives to Parlodel would be appreciated. I have heard of permax, cabergoline and CV205-502 but am having a difficult time locating any info. PLEASE HELP - I CAN'T TAKE PARLODEL ANY MORE!!!! Karin <kashq_AT_webspan_DOT_net> NJ USA - Wed Mar 26 15:36:20 1997 Is there any correlation between b12 deficiency, depression and prolactinoma? Also, are there any support groups in Connecticut? Susan Aronson <Sue470839_AT_aol_DOT_com> Manchester, ct USA - Tue Mar 25 15:41:21 1997 I am looking for a referral in the NJ/NYC area for transphenoidal surgery. Any references and/or stories that might help me would be appreciated. Thanks in advance. Patti Wong <bob.jrwong_AT_mci2000_DOT_com> East Hanover, NJ USA - Tue Mar 25 15:15:48 1997 Hello everyone! I just wanted to post a follow-up here as I have left previous messages regarding my, thought to be, Rathke's Cyst. I had surgery at Mass General on March 7th, and just wanted to let you all know what a wonderful experience I had there. My husband and I traveled to Boston from Indiana for a second opinion. I refered myself to the Endocrinologists at MGH and was seen by Dr. Katznelson, and Dr. Chi. I was treated with such great care that you would of thought I was their only patient!! After deciding on surgery, I was seen my Dr. Swearingen, and actually had the surgery done 2 days later. It all happened very fast, but with such an excellent outcome! I feel wonderful and had no problems at all with the surgery. Was released on the 3rd day post-op. My thanks are to the wonderful doctors, nurses, and people I met at MGH. The experience was exceptional, and I would greatly recommend MGH to anyone looking for answers! My tumor turned out to be a Cysticprolactinoma. Good Luck to all of you! If I can help with anything, feel free to E-mail me!! Your Freind, Deb :) Debbie <Debblondi_AT_aol_DOT_com> IN USA - Mon Mar 24 13:23:49 1997 I have select pituitary hypoadrenalism. I take 30mg. of hydrocorisone daily. Would like to hear from anyone with the same. Thanks. rocortisone daily. Would like to hear from anyone with the same. ame. Freda Coe <Freda 42_AT_aol_DOT_com> Orlando, FFl USA - Sun Mar 23 23:38:50 1997 My brother was diagnosed on Friday with a Macropititary adenoma. He lives in Hawaii and is looking for reputable endocrinologists there and a reputable neurosurgeon stateside. He has heard of Dr. Weiss at USC, Dr. Becker at UCLA, and Dr. Black at Brigham and Women's in Boston. Any thoughts? Thanks! Sara <Prodata1_AT_aol_DOT_com> Elongmeadow, MA USA - Sun Mar 23 23:10:10 1997 Any advice for a 17 year old with total blindness and uncontrolled severe behavioral dysfunction following radiation treatment for recurring craniopharyngioma? jamie <hxpc68a_AT_prodigy_DOT_com> USA - Sun Mar 23 14:21:56 1997 I was searching for info on Cushing Syndrome and this site appeared along with other. My sister has currently been diagnosed with this ailment and my brother was diagnosed 2 years ago. Helen Matter <HMatter_AT_aol_DOT_com> Oxnard, CA USA - Sat Mar 22 23:34:31 1997 I am not quite sure where to start. My wife was just diagnosed last week with a Growth Hormone producing Macroadenoma (2.0 x 1.8 x 1.8 cm). She has been scheduled for surgery Monday 3/24/97. Right now I just have alot of questions about what we may expect after the surgery. The doctor are telling us that she the tumor has pobably always been there, but it's growth was stimulated during the pregnacies of our two children. I would love to hear from anyone that has gone through the procedures for a growth hormone producing tumor. I am sure I don't have to tell you that we are very scared right now. Thank you Robert Knapp <rekii_AT_aol_DOT_com> Costa Mesa, CA USA - Fri Mar 21 14:15:46 1997 Hi there! It's nice to have this here for all of us with these related conditions! My name is Eric and I'm 36. I don't see many mens stories, so here is mine. Any feedback is appreciated. I was diagnosed with my Prolactinoma in 1991. At the time, my prolactin level was 664, the lowest its has ever been was 121. I've been on Parlodel first then Permax then both over the years. On 3 occasions in the last 6 years, I've been totally without health care and therefore, no treatment. Right now is one of those times. Scarey world we live in. Anyway, I've had the battery of MRI's which unlike most people, don't bother me at all, I just sleep through them, without any valium. However, my reactions to the drugs, that I could live without. My quality of life when on the drugs, is horrible. On both meds, individually and together, I suffer from horrible sinusitis with headaches that most of the time leave me in tears. I should note that I have a fairly high threshhold for pain. The drugs also leave me feeling queasy and nauseous most of the time, except when I'm eating. This is not the diet I'd recommend to anyone. My testosterone levels have been far below normal for men, and even less than normal for women. I literally have no sex drive. I also can't build any muscle mass because of the lack of testosterone. Though I do have to say that I'm not losing any muscle mass either. One consequence is because of lack of "need" and "usage" as my body perceives things, I've now had one testicle atrophy, shrink and become useless. The remaining one seems to be healthy in all other respects. My docs over the years have been wonderful for the most part, though in some cases I've had to pull information out of them with a bit of difficulty. My level of fatigue when on the drugs is nearly constant. The longer I'm on the drugs, the less I have energy to do and the less desire I have to want to do. I won't even begin to talk about the constant mood swings, the depressions, the nearly manic behaviour. Suffice it to say, it's not pretty. I will say that in my first 2 years of treatment, a few things helped me greatly. It was also in those years that I showed the best improvement. One, is that I used accupuncture and Chinese medicine IN ADDITION to taking the drugs. My doctor and endo. at that time supported me completely in this. Two, to mitigate the nausea, I used an illegal substance that is smoked, on RARE occasion. I have a strong reticence for breaking the law. I will say that it did help, A LOT! Now that it is sort of legal here in California, if you can, get it, and use it. Well, that's my story. I want to thank all of you for yours! It takes a lot to go through a condition like we have. If there are any guys out there, I'd like to hear what it was like for you. My newest question is about using DHEA in addition to everything else. I've also decided that I'm having the surgery, then going back on low doses of the drugs and doing accupuncture and chinese medicine. My goal is to be tumor free and healthy! I will achieve this goal! Thanks! Eric Eric Kamm <GemELK_AT_aol_DOT_com> Van Nuys, CA USA - Thu Mar 20 13:16:50 1997 Hi! I work for an agency for children with special needs. One of our mothers has a 4 year old daughter diagnosed with panhypopituitarism. She was born without a pituitary gland -- it took six weeks to diagnosis and they have almost lost her too many times to count. I have seen some wonderful information on adult-onset panhypopituitarism, but have found nothing so far on children born with this deficiency. We have some very scared parents here, and any information that anyone could forward along would be extremely helpful. I've included my e-mail address here at work. Thanks so much in advance for any help you can offer! Michaela <miery_AT_rnewhope.org> Mansfield, OH USA - Wed Mar 19 7:25:05 1997 I tried to email some people but could not get through. I had surgery for Cushings 7 months ago and am improvung slowly. The thing that amazes me is that through all this I have learnt the person I am and for the first time I like who I am. It is really strange that this has happened. My recovery is slow and the weight is slow. I don't produce and Cortisol of my own and am dependant on medicine. It drives me mad when people ask me questions like, why can't you go to the zoo all day? My mother, father and siblings didn't accept the illness until I was operated on, they denied the disease and then had a huge shock when they woke. It is,nt nice knowing that the ones you love can't cope when you are so sick. Has anyone else had such a problem. The one thing that has helped is that I know my family loves me but boy it has been hard. I have had alot of support from the people on this network and I thankyou alot. I hope that you all find comfort and find the best way to cope. Cope is a huge word for Cushings. Good Luck everyone Jan Ritacca <ndy_AT_ndy_DOT_com.au> perth, wa australia - Mon Mar 17 6:28:05 1997 "Didn't realize this was even on the net. I've been on Parlodel since 12-94. Brought my prolactin level down from 441 to 40 as of last month. Tonya <-> GA USA - Sun Mar 16 15:44:05 1997 I was diagnosed with a microprolactinoma "1-2mm" in Jan. 97. I am "trying" to tolerate 2.5 mg. parlodel a day. I have the following side effects. About 3 hrs. after dosage my nose gets real stuffed-up and somtimes I gag and throw-up a bit. I don't have nausea or stomach upset, just this gagy feeling at all times of day/night. It also seems to make my head pains become more active than normal?? Also makes me sleepy. Do any of these symptoms every go away? Dr. says 6-12 months on this and then reevaluate tumor and prolactin levels. I would appreciate any others experience / comments on parlodel's success, side effects etc. THANKS! Jay P.S. I love this page and have used it often. Great job. Jay Loucks <jayl2661_AT_aol_DOT_com> Spokane, WA USA - Sat Mar 15 4:49:25 1997 I Would appreciate any information that I can get on CRANIOPHARYNGIOMA and RATHKE CYST, TUMOR. My 12 year old niece has just been diagnosed with craniopharyngioma and the doctors will be operating the first of April, so any information that I can receive will be greatly appreciated. Cindy Haley <c_haley_AT_colby.edu> Waterville, ME USA - Thu Mar 13 15:13:51 1997 I just found out yesterday that my prolactin secreting pituitary microadenoma, which was removed in 1989, has recurred. It's almost 7mm in size and my prolactin is elevated again. I am interested in making contact with anyone who has information on, and experience with, alternative, homeopathic, natural approaches to treating pituitary disorders. Stacy L. Splaver <ssplaver_AT_fdic.gov> USA - Thu Mar 13 12:03:14 1997 Impressed with the research publications of Dr.Nicholas T.Zervas Dr.Mazhar Husain, M.S.,M.Ch. <husain_AT_lw1.vsnl_DOT_net.in> Lucknow-226003, India - Mon Mar 10 21:16:59 1997 Impressed with the research publications of Dr.Nicholas T.Zervas rvas Mazhar Husain <husain_AT_lw1.vsnl_DOT_net.in> Lucknow-226003, U>UUp India - Mon Mar 10 21:11:28 1997 Thank you for all of the information you have for individuals suffering from pituitary tumors. S.Presley <Sabberr_AT_aol_DOT_com> Orlando, Fl USA - Sun Mar 9 22:25:00 1997 This is not a question, this is a statement. I have a pituitary gland tumor that is 2 centimeters big. There has been no growth in the last 6 months. I am trying to hold out from having the surgery for as long as I can! Thanks for your informative page on this topic! LD <SassyLD1_AT_aol_DOT_com> Plattsburgh, NY USA - Sat Mar 8 12:07:05 1997 Good information. I am a prolactin-secreting macroadenoma patient. John L. Hope <jlhope_AT_aol_DOT_com> Springfield, VA USA - Sat Mar 8 5:34:07 1997 Intersting information. Glad I found you. Had surgery on 1/21/97 for a non-secreting macro. Am now interesting in corresponding with any females who have successfully combined panhypopituitarism with becoming pregnant. Thanks. Just e-mail me! Aimee <ALackeyOH_AT_aol_DOT_com> Franklin, OH USA - Sat Mar 8 0:42:57 1997 Hi, my name is Shirley. I was diagnosed with a 3mm microprolactinoma in Aug. 1996. Since then I haven't started any medication but feel confident after much research that this is a very manageable condition. For all you Canadians I believe the Pituitary Tumor Network Association is organizing a small meeting for PIT people in Toronto on April 5th, for more info. contact the PTNA at (805) 499-9973. Happy health to all!!! Shirley <shirley.brockhill_AT_alphanet_DOT_net> Toronto, Canada - Fri Mar 7 15:06:29 1997 Son, 12 has craniopharyngioma. He had surgery a year ago and also radiation. Jill Schroer <jsgarden_AT_aol_DOT_com.> St. Charles, MO USA - Thu Mar 6 16:40:04 1997 I have successfully been on Parlodel for 3 years with the usual side effects. Since finding this site I have read about Permax,Cabergoline and CV205-502. What are they? What are their side effects and how are they working for you? Peggy <AGNSP_AT_AOL_DOT_com> USA - Thu Mar 6 8:37:41 1997 today marks one year since my surgery to remove a pituitary macroadenoma. the only side effect i have suffered are hypothyroidism and a shoddy memory. i thank god every day that i have been so fortunate. i feel that this one year anniversary marks a date where i can leave behind being a patient, and move on to being a new person; a survivor. i feel like calling today my birthday. i am one year old now... i feel more grateful everyday for all the good things i have. i know that if this thing grows back, i will be able to handle it again, hey if i did it once, it should be a breeze next time, right? (well, i really don't want to find out!) i thank everyone for this page and all the positive thoughts it generates. i pray for everyone out there with tumor problems, and hope that your recovery can be as wonderful and miraculous as mine. crystal sutherland <crystaldawn_AT_mail,utexas.edu> austin, tx USA - Wed Mar 5 20:04:59 1997 PLEASE SEND THIS TO THIS PERSONS ADDRESS FOR MORE INFO ON YOUR GUEST BOOKS. PLEASE...PATIENT KRISTI BENTLEY <866 QUETZAL ST. > CORPUS CHRISTI, TX USA - Wed Mar 5 18:02:15 1997 I sure am thinkful for finding this on the internet. I have been so alone with this . Terri USA - Wed Mar 5 13:42:16 1997 Had surgery for a pit. tumor about 11 years ago, but still suffer from elevated prolactin levels. I cannot tolerate Parlodel in any way. The side effects are horrible for me. My Dr seems to think if I try taking Parlodel vaginally the side effects should go away. I'm tired of all of this, and since I almost 40 years old, have to start thinking about memopause. Would like to e-mail w/ people who have the same type of problems. Look forward to your e-mail. Thanks. Ann Ann Schneider <plumbline_AT_sprynet_DOT_com> Rochelle Park, NJ USA - Wed Mar 5 12:26:29 1997 I was diagnosed with a PituritryTumor in 1982 when I was 22 years old. I didnt have treatment until I was wanting to start a family. When I was 25 I decided it was time to start, I went to see my endocryonlogist, who put me on bromocryptine, after having a c.t scan. I have since had two children,I have now been taking bromocryptine for 8 years full time ,and I must say I am sick to death of having to take them.I feel that Im not living a quality of life existance. I have mood swings, I always feel that my glands in my neck are up, Im constantly tired, and Im turning into a hypocondriac,I have never heard of any type of support centre untill I entered this page .Ive often thought of starting my own support group but didnt know if there were many like me out there.Its been interesting reading the information reguarding tumors of the piturity gland and I want to thankyou, Any new information reguarding this tumor would be greatly appreciated. thanking you again Jeanette Scott Jeanette Scott <xscott14_AT_kiss_DOT_net.au> melbourne , vic australia - Tue Mar 4 3:55:22 1997 I was diagnosed with a PituritryTumor in 1982 when I was 22 years old. I didnt have treatment until I was wanting to start a family. When I was 25 I decided it was time to start, I went to see my endocryonlogist, who put me on bromocryptine, after having a c.t scan. I have since had two children,I have now been taking bromocryptine for 8 years full time ,and I must say I am sick to death of having to take them.I feel that Im not living a quality of life existance. I have mood swings, I always feel that my glands in my neck are up, Im constantly tired, and Im turning into a hypocondriac,I have never heard of any type of support centre untill I entered this page .Ive often thought of starting my own support group but didnt know if there were many like me out there.Its been interesting reading the information reguarding tumors of the piturity gland and I want to thankyou, Any new information reguarding this tumor would be greatly appreciated. thanking you again Jeanette Scott Jeanette Scott <xscott14_AT_kiss_DOT_net.au> melbourne , vic australia - Tue Mar 4 3:52:57 1997
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