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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 2003
My husband had a pituitary tumor
removed about 4 years ago. It seems that after that things changed.
He has had some sexual effects, I don't know if they are medical
or psicological, but it has almost ruin his life. Any help please?
Thank you and God bless! I am receieving treatment for
Pituitary deficencey as a a result of having a prolatinoma removed
in 1997. I was searching the net to see if there is a mortality
rate or difference from others. W/M 56 years old. Way to go Mary!!! I am going
through the very same thing with a prolactinoma. I would be
very interested to chat with you. If you would be so inclined
please send me an e-mail... Good News to report. I used to come to this site all the time looking for peoples stories of sucess with this problem (prolactinoma) and didn't find too many, since most people don't come here when they are fine, only when they are scared or fed up. In fact I could probably find my old inquiries in the archives of this site. Anyway, I was diagnosed with a 5 mm prolactimoma in Aug 2000 (I was 28yrs old) and did not want to take the meds for the rest of my life. In fact, I did not take any meds for the prolactinoma. In March of 2001 I had transphenoidal surgery at the University of Virginia by Dr. Edward Laws (I live in Missouri, but from 6 months of research into doctors, treatments, statistics, etc. decided he was the best doctor for me) My prolactin went from 160 before the surgery to a 4 after. I have had no reoccurance, my last test results showed it at 6. I had a bid of trouble recovering, lots of nausea from the anethetic, then got a cold with slowed my recovery. But I did make it through ok, it was definitely worth it for me. I lost 15 pounds in the year after the surgery, without any eating changes, and a few more on the atkins diet this summer. I now weigh 142 lbs at 5'4" tall from a high of 165. I do have extrememly tender breasts now, ever since the surgery, but no one seems to know why. I used to have severe headaches right behind my eyes before the surgery, really really bad ones, a few times a week. I have not had any like that since the surgery, although I have had an increase in sinus problems (although I have bad allergies and smoke so that sure doesn't help that ) All in all, I am just letting you know that there is hope. Some people advised me against the surgery because it is debated in regard to the prolactinoma, but I wanted to do it anyway based on my own research. I fought my insurance company to cover the surgery at UVA at an "in network" rate, even though they were out of network. This was not easy, and took many many many hours of paperwork and research. I think the final thing that got them to agree (of course it was not what was best for the patient) but I found out that the UVA surgery would save them 40K because the pituitary ward there is less expensive than a general ICU in my town. So this chapter in my life of pituitary problems is over, done with, and on most days, totally forgotten. Good luck and best wishes. Mary Mary - Saturday, September 27, 2003 at 02:15:04 Hi, it's me Alia again. I have a pituitary macroadenoma,a nd was diagnosed in June of this year. I was wondering if anyone has lost or gained weight after using Bromocriptine. Please let me know. Also, thanks to those who responded to my last entry, I appreciate ot very much, I will be e-mailing you soon with updates. Thanks again....Alia Alia Bancey <Alia25aol_DoT_com> Miramar, Fl - Thursday, September 25, 2003 at 20:02:55 HI I HAVE PROLACTINOMA FOR SEVEN YEARS JUST FOUND OUT IT IS A TUMOR A MONTH AFTER I GOT MARRIED .NOW WE WANT TO START A FAMLIY JUST WOUNDER IF ANYONE HAS GOTTEN PREGANT ON DOSTINEX AND CLOMID BEEN TRYING FOR 5MONTHS NOW THANKS. Nanette <bigbranz_AT_wi-net_DoT_com> rosholt, wi - Thursday, September 25, 2003 at 15:00:13 I was just diagnosed with micro pituitary adenoma and started Dostinex yesterday. How long does it take before the headaches, nausea stop? Also, when do you start to lose the weight? I have gained almost 30 pounds which is very uncommon for me. Thanks - this is a great site. Kris <yayachic_AT_hotmail_DoT_com> Plano, TX - Thursday, September 25, 2003 at 10:56:46 Just wanted to know if anyone has had their pituitary tumor removed by anyone on the East Coast. If anyone has seen Dr. Oyesiku (Atlanta, GA) please e-mail me. Thinking of having my macroadenoma removed and was trying to find the best neurosurgeon that I can that's not so far away. Thanks... Lisa <cherokeechick32000_AT_yahoo_DoT_com> Anderson, SC - Wednesday, September 24, 2003 at 15:17:23 I'm happy to know that there are others "out there" having the same sort of problems as me. I have an elevated prolactin level on 45 (coming down with Dostinex from 148 last year), I've had an MR scan last year showing no prolactinoma. I've now stopped with Dostinex, to see if the prolactin level is raising again. My Doctor says that I've reached a normal prolactin level, but it's not normal on 45 is it? My problem is that I suffer from several symptoms, and my Doctors says that they have no connections with the hyperprolactinaemia. I suffer from nausea, severe fatigue, dizziness, severe PMS, often feel like I'm having the flu. Do you recognize these symptoms? I've stopped Dostinex 3 weeks ago, so it can no longer be side effects from the medicine. I've tried the herb Vitex Agnus Castus, but I'm a bit anxious to mix it with Dostinex, do any of you have experiences? Is there hope for the future, can the Prolactin-level suddenly get back to normal? Greetings Gitte from Denmark Gitte Hansen <gitte_hansen_AT_jubiimail_DoT_dk> Randers, - Wednesday, September 24, 2003 at 14:06:40 Hey, Everyone! I was diagnosed with a pituatary tumor when I was 15 I'm now 28 and I am still seaching for alternative ways to heal. It has defenetaly been a journey for me. I am now in the process of going to healing school, learning techniques to heal myself and help other s as well. Don't give up people. Do not accept a simple answer, such as take your meds! There are other ways. You just have to give yourself alot of love, cmpassion , kindness, and understanding. I am working hard to unravel this question it might take me a lifetime, but at least I'll know that I tookit upon my hands and did not simply beleive what I was told. Light and Love....Peace Gigi <gigistar_p_AT_yahoo_DoT_com> San Jose, Ca - Tuesday, September 23, 2003 at 17:32:07 Just been diagnosed with a pituitary tumor 5x4mm don't know what to expect go to see endocrinologist tommorrow. Judy <danasmith8_AT_yahoo_DoT_com> mount airy, nc - Tuesday, September 23, 2003 at 16:42:07 I just started experiencing bouts of blurry & double vision less than a week ago. An MRI on Tuesday revealed a possible adenoma on my pituitary that is possibly pressing on the optic nerve, hence the problem. No other symptoms whatsoever. I'm scheduled to see a neurosurgeon & endocronologist in the weeks ahead as next steps along with further vision tests. HOWEVER... I'm personally very adverse to traditional medicine (drugs, surgery, etc.) & would consider them only as a LAST resort. I'm looking for alternative measures to treatment (diet, fasting, homeopathic, etc). I'm convinced these benign tumors can be shrunk by means other than drugs with nasty side effects & surgery with same. But of course no one in the medical community would ever tell me that. Anyone else out there have the same feelings, any ideas, experiences, etc? Please e-mail me. Thanks so much! Aaron <eccles1213_AT_aol_DoT_com> Baltimore, MD - Thursday, September 18, 2003 at 19:49:19 I have an elevated prolaction harmone and I was wondering do any of you have that. I've had it about 12 years Debra <jonas5832_AT_msn_DoT_com> Eugene, OR - Wednesday, September 17, 2003 at 23:34:01 Hi! stumbled across your site. Good information. I had scrubbed for Doctor Rhoton, Day, Fessler, Freedman,Mickle, et.all. here at the University of Fl. Will pass this site along to others who need info. Thanks, Lynn Lynn O'Keefe CST <ess32606_AT_bellsouth_DoT_net> Gainesville, Fl - Wednesday, September 17, 2003 at 10:58:41 this type of site should be encouraged onyeoru onyeze <obihart_AT_onebox_DoT_com> punjan, punjab - Tuesday, September 16, 2003 at 00:23:58 Hi, it's me again: Alia. I just wanted to make another posting. Im not sure what I need to do. I have a pituitary macroadenoma. I was diagnosed in May or June of this year. I have had only "one" visit with a neurosurgeon. Im not really sure of what to do exactly. He is talking about removing the tumor through my nose. Im not too sure if the best way to go is to remove it via surgery or to take meds. My husband and I "do" want children very soon. I love this site. I have seen so many postings from people that hit home so much. So many symptoms I can't even explain it. The mood swings, weight-gain, excessive thirst, carple-tunnel syndrome. Wow!! I mean I was thinking that I have arthritis. This "one" deficiency, caused a deficiency in my whole entire body (practically). Well, again if anyone can give me any advice of any kind, or know a good and credible Doctor in my area: South Florida...(Miami, Hollywood, as far as Boca). Again, great site. Alia...... Alia Bancey <Alia25_AT_aol_DoT_com> Miramar, Fl - Monday, September 15, 2003 at 15:06:33 I am a 26 year old woman who was diagnosed with a microprolactinoma last year. I had some testing done to find out why I was lactating, even though I was not pregnant. My results showed that I had a prolactin level of 478. I was first put on Pergolide, which was pure torture for me!! Now I am taking Parlodel, and life has been a lot more tolerable! My prolactin level has decreased to about 130. One thing I have noticed is that my mood has been affected by this medication. I seem to be more easily agitated. Does anyone else have this problem with Parlodel? Krystal <k_morris_AT_comcast_DoT_net> Fort Meade, MD - Monday, September 15, 2003 at 12:54:51 I would like to receive up to date information on the treatment of microprolactinomas. Gauss M. Cordeiro <gausscordeiro_AT_uol_DoT_com_DoT_br> Recife, - Monday, September 15, 2003 at 08:32:27 ***://groups.msn_DOT_com/PituitaryChat Join Pituitary Chat, a pituitary support group that provides information, support, and encouragement for pituitary tumor patients. We encourage you to learn all you can about your condition. We're all in this together! MinnieChat <PituitaryChat_AT_groups_DoT_msn_DoT_com> - Saturday, September 13, 2003 at 22:21:56 I am now age 56 and had symptoms of prolactinoma since puberty. Symptoms of stopping period, not getting pregnant, lactation before age 25, etc. MRI & CAT scans developed enough to view tumor about my age of 30 to confirm diagnosis. I did NOT have surgery or medication, so didn't have a period...very cheap way to go! Tumor has never grown and I have adopted 3 wonderful children. Think about accepting God's plan for your life and maybe it will turn out as wonderful as mine! LH <lhansen_AT_mho_DoT_net> littleton, co - Saturday, September 13, 2003 at 14:01:56 I HAVE HAD COMPLETE HYSTERECTOMY. ANY SEXUAL SUGGESTIONS? JULIA STRIBLING <bstrib_AT_charter_DoT_net> WOODRUFF, SC - Saturday, September 13, 2003 at 01:17:33 I am from Germany and was surgend last year at a macroadenoma.Is there somebody who can give me some advices for the next time?Sometimes I feel happy sometimes down. Thanks and best regards nnammad_AT_freenet.de Volker Hannover, GER - Thursday, September 11, 2003 at 06:57:20 I am looking for somebody, who has had a pituitary adenoma to talk about the time after. Thanks and best regards. Volker <nnammad_AT_freenet_DoT_de> Hannover, - Thursday, September 11, 2003 at 06:50:05 I am looking for somebody, who has had a pituitary adenoma to talk about the time after. Thanks and best regards. Volker <nnammad_AT_freenet_DoT_de> Hannover, - Thursday, September 11, 2003 at 06:48:47 I was diagnosed at the age of 16 years old. I am now 25. Aimee Burke <aimee_AT_claytonparkchiro_DoT_ca> Halifax, NS - Wednesday, September 10, 2003 at 11:36:42 I would like to add to your list of eople that has or had a pituitary Tumor. I was diagnosed with one on May of 1998 and it was removed November 1998. I have had alot of problems before and after the tumor was remove. One was weight gain before and after because the tumor caused me to be hypothyroidic and I got to be over 200 pounds. Now all of a sudden I strated to loose weight fast and now I am down to 158 pounds. I got a staff infection at my last back surgery and was put on 2 antibodics, one of the antibodics rafidin(not sure of spelling) caused me to get dehydrated, have a blood pressure of 57 over 39 and high fevers. I was in the hospital for a week. My Neuro sSurgeon Rick Holmberg along with my then family doctor Wieta Bland put be in the hospital. Dr Hoilmber told me that it was tipical of a person without a oituitary to become Addisonion, boy was I sick. Now I am having Thyroid problems and liver problem and am being sent to a specialist. Oh well, par for the course. Thanks for listening. Ione Neese Ione Odette Bailey Neese Greensboro, NC - Tuesday, September 9, 2003 at 22:33:55 I am 25 years old and at the age of 23 I have was diagnosed with a pituatary disorder. My last prolactin test revealed a level of 186! I am questioning whether or not to proceed with the surgery to remove the tumor. The medicine that I have been prescribed but seldom take is Dostinez. It makes me feel very sick and groggy. I feel as if this is my punishment from God for all the bad things I have done. Am i too young for such a tumor and what causes it? I do want children someday. I hate this tumor and I want it to just go away!!!!! Someone please give me some advise. Coritta Roberts <Hwayneroberts_AT_msn_DoT_com> Lexington, KY - Tuesday, September 9, 2003 at 16:21:38 I am looking for a good endocronologist on the south shore(Mass.)i've been diagnosed with a pit. tumor Please contact me if you know of any. Thank you Dionne <tntwalt_AT_msn_DoT_com> weymouth, ma - Tuesday, September 9, 2003 at 12:36:47 I am looking for a good endocronologist on the south shore(Mass.)i've been diagnosed with a pit. tumor Please contact me if you know of any. Thank you Dionne <tntwalt_AT_msn_DoT_com> weymouth, ms - Tuesday, September 9, 2003 at 12:36:18 Tried HGH from 1998-1999 after 22 year's being panhypopituitary per removal of the pituatary gland due to craniopharygenoma in 1977. Initially HGH made very + impact: increased energy, 18 lbs weight loss, increased drive and energy, easier to move, felt hungry for first time, no hypoglycemia, but within 2-3 months noticed trouble recalling vocabulary, learning and remembering new things. I felt a buzzing sensation in the middle of my brain. The cognitive impairment related to the HGH subsided over a 6 month period once the HGH was discontinued. I wonder if beginning HGH replacement therapy after 22 years is a bad idea for the brain. The hippicampus has cell turn over, it is the part of the brain which is responsible for entering and retrieving information short term. I wonder if the HGH, speeds up the cell turn over in the hippicampus too fast to make up for lost time. I really liked HGH but the dementia wasn't worth it. I wonder if starting HGH replacement soon after the start of panhypopituitarism would avoid the memory problems. The other issue with HGH is that it raises the IGF levels. The research on IGF levels and aging in people with long term Panhypopituitarism is meager at best. Started the HGH at age 43 but looked 29-30, one year of HGH seemed to age me about 2-4 years. If reduced rate of aging is one of the benefits of going through the horror of surgery,then I wouldn't want to ruin it with HGH. The greatest thing a Panhypopit person can do is restrict calories, especially sugar, stay away from alcohol or just a little alcohol and push to work out everyday. I think this has the biggest impact on my life. Sometimes it takes a little time and effort to push myself to workout but when I do, I feel so much better. JEFFCORBIN <JEFFCORBIN1_AT_JUNO_DoT_COM> Phila, pa - Monday, September 8, 2003 at 18:12:35 Hi I was diagnosed with a pituitary tumor in May of this year. Iam 27 yrs old, and has not had my period "naturally" since I was 15. I was wondering if anyone knows any good Doctors in or around my area. I will appreciate it. Alia <Alia25_AT_aol_DoT_com> Miramar, Fl - Monday, September 8, 2003 at 15:37:31 Hi I was diagnosed with a pituitary tumor in May of this year. Iam 27 yrs, and has not had my perios "naturally" since I was 15. I was wondering if anyone knows any good Doctors in or around my area. I will appreciate it. Alia <Alia25_AT_aol_DoT_com> Miramar, Fl - Monday, September 8, 2003 at 15:34:07 panhypopituitarism since 1977 at age 22, craniopharyginoma, craniotomy at National Naval Medical Center Bethesda, by Dr.Early. 1977. Married 2000, had beautiful *** 2003. Tried GH, but caused memory problems, diabetes incipidus stopped in 1978. Total hip 78, revised. 92,94,98 due to avascular necrosis associated with decadron treatment pre and post craniotomy. Apear 15 years younger, even after one year of GH seem to age me 5-6 years. GH was benefical for several months before memory problems started. No hypoglycemia, felt hungry for first time, more energy and drive.... life long couch potato became mad man in the weight room. Within a year after stopping the GH, became couch potato again but could recall my vocabulary, remember people's names again. Take prednisone 6mg qd, synthyriod 2.25mg qd, Gonadatropin hormon, prilosec for stomach problems due to prednisone. Jeff Corbin <JeffCorbin1_AT_juno_DoT_com> - Monday, September 8, 2003 at 11:25:11 i have had my tumor since i was 13, i'm 26 now. it is controled by dostinx. can this medication make it easier to get pregnant? i know what most of you feel like. my *** leak milk if i'm not on my medication and it imberising. i hate being around ppl when they do that. i go about 10 mos. without taking it b/c i can't aford it. well thanxs for reading everyone. veronica <babyg32499_AT_yahoo_DoT_com> poteau, ok - Sunday, September 7, 2003 at 23:26:29 step father in law was recently diagnosed with a tumor on his putitary gland any information would be helpful Phyllis Webb <phyzwebb_AT_crosspaths_DoT_net> Marshalltown, Ia - Tuesday, September 2, 2003 at 22:17:45 Dear Sue A King. Polydipsia is a condition where we feel extremely thirsty and cannot be overcome by just drinking. This condition may caused by the some "disturbances" to the pituitary gland. Or it may caused by psychological problem. A 24 hour urine test or water depriviation test will be carried out by endocrine doctors to determine whether it is due to pituitary problem or psychological problem. Polydipsic is the term use to a person suffering from polydipsia. Schizophrenia is a mental disorder, it's not related to pituitary at all. You can find out more about these two different situations in any search engine. I am no expert but just somebody with pituitary malfunction for the past 15 years. Regards. Ina Hasan <iiinahasan_AT_hotmail_DoT_com> Kuala Lumpur, - Sunday, August 31, 2003 at 10:07:08 Hi, I wanted to add my experience as it seems a little different than others. I was diagnosed with a pituitary adenoma in 1979 and operated on transphenoidally. They weren't able to get the entire tumor and have been on bromocryptine since then. I started on 7.5 mgs a day and have been able to reduce that amount to 1.25 mgs a day over the years. During that time I've had two children. I had to go off the medication during pregnancy and after both pregnancies, my prolactin levels went up and the dosage needed to be increased. But I'm down to my lowest level yet and my prolactin levels are still very low. During the last 10 years, however, my periods have been very heavy. Are there any other longtime bromocryptine users out there that have found this to be the case? I'd be interested to hear if you think there's a connection. Lisa Medfield, MA - Sunday, August 31, 2003 at 09:56:00 Dear Sherrie, Your doctor said it right. Tiredness, exhausted, lethargic is part of this disease. It's something to do with the serum level. My endo specialist said the very same thing. You can search for serum topic, it may be able to explain to you, a little bit technical, but it helps us to understand and lead us to better adopt to life with this disease. I am no expert but I am having several diseases due to malfunction of the pituitary for the past 15 years. Take care. Ina Hasan <iiinahasan_AT_hotmail_DoT_com> Kuala Lumpur, - Sunday, August 31, 2003 at 09:42:53 I am trying to find information on a condition known as "polydipsia". Two resident's in the facility I work in have diagnoses of schizophrenia and schizoaffective disorder. They are also called "polydipsic". Is this condition purely pschogenic in nature? or is it a condition resulting in pituitary disease? I would be grateful for any information about this. Thank you. Sue A. King <a2dog5_AT_aol_DoT_com> Grand Rapids, MI - Saturday, August 30, 2003 at 22:49:48 I HAD A PITUITARY TUMOR REMOVED IN AUG. 2000.I JUST HAD MY FIRST MRI THAT I HAVE HAD IN TWO YEARS.I GOT A CALL SAYING THERE WAS A PITUITARY MASS.I WOULD LIKE TO GET RESPONSES FROM ANYONE THAT HAS HAD THIS HAPPEN.I HATE WONDERING. TRACY CROMER <DTKDCROMER_AT_AOL_DoT_COM> GRAYSVILLE, TN - Saturday, August 30, 2003 at 20:30:06 I am very glad I found this site. I have a prolactoma, I am on Dostinex, I take 1 pill 2 times a week. Other than the occasional feeling yucky, lately I have been feeling totally wiped out. I have no energy, no stamina. When I would mention this to my Dr., he would say "Yea, that is part of it." Well lately, it is happening more often, so I called him and said I was getting frustrated so he ordered bood work. That just happened today, so of course I don't have any results yet. The tests he ordered were prolactin, adrenal serum, and thyroid. I remember reading a while back that the adrenal glands are involved and that could be the reason for the exhuasted feeling. I wonder if anyone else has had this as well and what is done for it. I can't wait to hear something. thanks, Sherrie Sherrie Binstock <jbinstoc_AT_mtco_DoT_com> Chillicothe, Il - Friday, August 29, 2003 at 20:23:53 I have acromegaly. I am 31 years old now but was 28 when I was diagnosed with a pituitary adenoma. I had transsphenoidal surgery and Gamma Knife Radiation. My treatments have taken a lot out of me. I still have to take naps and am unable to work a full day. I am married now and would like to start a family. However, I am on Sandostatin injections and Dostinex (to keeps my growth hormone levels down). I was wondering if there are any mothers out there who have been treated for acromegaly- Have your children had any health issues resulting from your high growth hormone levels? I am working with an endocrinologist and he recommends going off of my injections and Dostinex before I get pregnant. However, I have to know the negative effects (if any) that this may have on me and my unborn baby if my levels skyrocket again. Jessica <jmshevland_AT_yahoo_DoT_com> PA - Sunday, August 24, 2003 at 20:29:47 ACROMEGALY~ Does anyone have it? Please e-mail me. I was just diagnosed and had surgery two months ago. Mary Mary Kaiser <Marydkaiser_AT_earthlink_DoT_net> st.louis, Mo - Friday, August 22, 2003 at 22:49:49 I am 30 years old and have two little *** 1 and 3. Thanks to my friend I had and MRI and found out I had Acromegaly. And had a Pituitary tumor 2.7 CM. What a shock~! But a relief to know what was wrong with me. I had surgery a week and a half later and am now eight weeks post-surgery and feeling pretty good. There is still tumor left as my GH and IGF-1 levels are elevated. I have my follow up MRI soon and will learn about further treatment at that time. I am trying to educate my self as much as possible about my condition. My Masters is in Education Health and PE and I had never heard of Acromegaly until my diagnosis. Any information you have would be greatly appreciated. Thank You~ Mary Kaiser Mary Kaiser <MarydKasier_AT_earthlink_DoT_net> St.Louis, MO - Friday, August 22, 2003 at 22:35:05 I have been taking parlodel for 5 weeks. I just got my first period in nearly 2 years. (I apologize to any male readers who may be offended by talk of the curse!) My menstrual flow is insane right now. I should buy stock in feminine products. For any of you other paroldel/bromocriptine users out there - was your experience similar? I'm currently on day three and going very strong. I'm hoping that it will subside soon. Kelly Rogers <krogers_AT_jea_DoT_net> Gainesville, FL - Friday, August 22, 2003 at 15:34:01 I want to know the result of treatment of pituitary adenoma using gama knife better than the ordinary treatment , Mohamed Nasr EL din <hassanmo2000_AT_yahoo_DoT_com> Baltimor, MAryland - Friday, August 22, 2003 at 11:33:55 Hi Pam from Columbus, I tried to write you directly, but your address doesn't work. Please e-mail me directly. acrowhat_AT_aol_DOT_com Trisha <***_DoT_pituitarysupport_DoT_com> OH - Friday, August 22, 2003 at 07:51:32 I am somewhat lost at the moment. I was diagnosed a few years ago with a Prolactinoma and Thyrotoxicosis. These have been treated with Bromocriptine and Carbimazole. However, for over twelve months I have had other symtoms not normally related to either of these mentioned conditions. I have been told it is probably Multiple Sclerosis and due to undergo tests quite soon. None of these conditions listed are heredity and I am wondering can MS be caused by the Prolactinoma in anyway? Furthermore, I developed this condition in my late twenties and my brother has recently started with similar symptoms, as I did several years prior. He is awaiting his results. However, recapping on our past, my brother and I when we were children (eight and nine years old) developed lumps in our chests behind the ***. This subsided within three weeks and was diagnosed as a viral infection. Yet, over twenty years later my brother and I now have symptoms comparable and the prolactinoma effects the breasts causing lactation. We could not have had the prolactinomas before our twenties, as usually when tumours occur before puberty it effects the growth pattern in younger people. We were also brought up in an area intensely polluted by endocrine disrupters and I would be most obliged if anyone could please advise me whether they have had similar experiences and if there is any statistical data to explain the reasons? Thank you. Mary Smith <Mary_Smith_273_AT_hotmail_DoT_com> Liverpool, Merseyside - Thursday, August 21, 2003 at 21:47:31 Hey everyone! I thought I'd update you as to the latest on what's been happening. I saw the neuro (I've lost count as to how many already!) on July 29. She said the exam looked good, but was thinking of putting me on Topamax for my headaches. She was puzzled about the "inside" headaches and the other neuro episodes, so she ordered an MRI and a consult with an epilepsy DR. The epilepsy DR. said it does NOT look like seizures, but is waiting for the EEG copies from the other hospitals to "make sure". He said in the meantime to go see a psyche. I've seen the psyche he wanted me to see already, and the psyche wants me to "finish up" with all the medical stuff FIRST before I see him again, just to make sure everything medical has been ruled out. The MRI results came back a little "ify-ify". I did NOT have the contrast, since it has brought on some neuro probs in the past. On the MRI without contrast, it says "On thin coronal T1 inages through the sella turcica, overall the pituitary is not appreciably enlarged, measuring 5-6mm in height, with a relatively flat superior margin. The infundibulum is midline. On these images, the pit. is of relatively homogeneous signal, although certainly contrast administration would be necessary to evaluate for potential microadenoma. There is a tiny, approximately 2mm round focus of increased T2 signal in the right midbrain, immediately posterior to the cerebral peduncle. It is of questionable significance. Unenhanced MRI of the brain is essentially unremarkable." I have NOT heard anything back from ANY of the DR's, so I'm just playing the waiting game yet again. No Topamax. No thoughts on the MRI. (I got the results myself...no DR imput yet.) A current follow up for the neurologist in November. Still have the same symptoms. Just getting tired of all of this. Any thoughts from anyone?? Should I keep pushing the issue or just say the heck with it and attempt to live my life again and just wait until something "more significant" pops up either on exam or on film??? Kathy <LabSci2_AT_aol_DoT_com> Oak Creek, Wi - Wednesday, August 20, 2003 at 22:56:14 HI I AM A 29 YEAR OLD FEMALE I HAVE A TUMOR ON MY PITUITARY GLAND I HAD MY 3RD MRI DONE ON TUESDAY I WENT TO MY ENDONORCOLOGIST TODAY HE SAID, I AM GOING TO HAVE SURGERY DONE. THE TUMOR IS ABUNTING AGAINST MY VISION CAUSING ME NOT TOO SEE OUT OF MY RIGHT EYE AND I AM HAVING REALLY BAD MIGRIANES. THE 3RD MRI SHOWS THAT THE TUMOR IS GROWING UPWARD WITCH ISN'T A GOOD THING. MY SURGERON IS SUPPOSE TO CALL ME UP TOMMORROW AND GIVE ME A DATE ON WHEN THE SURGERY IS GOING TO BE. THE SURGERY WILL BE DONE FROM THE ROOF OF MY MOUTH . I AM SCARED OF HAVING THIS DONE CAN ANYONE TELL ME HOW THERE SURGERY WENT? THE ENDORNOCONOLIST SAYS HE CAN'T SAY IT WON'T COME BACK SO IT'S KINDA A SCARING FEELING.. I AM TRYING MY BEST TO GO ON AS IF NOTHING IS GOING ON STILL WORKING AT MY JOB INTILL THE SURGERON GIVE ME THE GREEN LIGHT FOR SURGERY... I WISH EVERYONE THE BEST OF LUCK HAVING THE PROBLEMS AS ME GOD IS ON YOUR SIDE AND IS ALWAYS WITH US .. :) PAM <PINCESSIMAHONE_AT_AOL_DoT_COM> COLUMBUS, OH - Tuesday, August 19, 2003 at 23:42:45 I have a pituitary tumor and have been on bromocriptine for over 6 years. I'm 32 and have two *** under 4. I was advised to stay on my med'n during both pregnancies, I did and all was find. My prolactin level is 7 and so I am slowly starting to lower my dosage of med'n. Is there anyone out there who has lowered their med's slowly and with the end result as being bromocriptine-free? Recurrence of high prolactin levels? I really don't want to live my life on med's. Sherri - Tuesday, August 19, 2003 at 23:27:10 Hey I just wanted to say you have a very informative site which really made me think ... I just wanted so say thank you guys ! i really like your site and i hope you'll continue to improving it, here's my contribution to your amazing site, some cute and funny links for you to visit, thanks a lot !Celebrex - CelebrexPenis Enlargement - *** EnlargementVig-RX - Vig-RXPhentermine - PhentermineMeridia - MeridiaVig-RX - Vig-RXVioxx - VioxxOrtho Tricyclen - Ortho TricyclenRetin-A - Retin-AXenical - XenicalPropecia - PropeciaVig-RX - Vig-RX John Wolfgang <jowolfa2_AT_hotmail_DoT_com> NYC, NY - Tuesday, August 19, 2003 at 14:58:13 Hi everyone Just another Pit. tumor victim. I have had my tumor for over five years now and have been on dostinex for 2 and a 1/2 years. When fisrt diagnoised my prolatin level was at 3050 know it is about 750 just interested to hear from any aussie sufferes that a going though an emotion time trying to conceive. I'm in need to talk to someone that may need some support. Would love to hear you. joanne <rileyjoanne_AT_msn_DoT_com> bendigo, Vic - Monday, August 18, 2003 at 05:06:19 I was diagnosed with a pituitary tumor 3 months ago, my prolactin levels were over 1200 when normal levels are suppose to be under 30, I started taking Parlodel, and I am getting some real bad side effects, such as diarreah and stuffy nose. I wonder if these problems ever go away, I feel that the diarreah is controlling my life and I am finding myself extremely depress about it. I also would like to know if the Parladel will keep the tumor from growing further. Please share your insights. Mauricio Berdugo <mab19521_AT_msn_DoT_com> Poughkeepsie, NY - Sunday, August 17, 2003 at 10:21:36 Hi, I am at my wits end at the moment. I have just returned from spending 4 days in hospital after having 3 migrane headaches in the space of 5 days, all with vomiting and even a nose bleed. Two years ago I had both overies removed as I had estrogen levels over 3,500. My FSH and LH were also high. I was told I probably had an overian tumor and it was best that they both came out!! The histology from the overies was nothing more than benign cysts and the gyno report said that this could not have been contributing to the high levels. This was not followed up however. I am now taking HRT and I am still having problems with high FSH and now my Tyroid seems to be playing up too. I seem to fluctuate from underactive to overactive tyroid. With sometimes very high TSH. I had an MRI which shows a partially empty sella and my endocronologyst seems to think that that I have had a pituitary adenema that has dissapated and that there may be some tissue that is still functioning although he can't see any on the MRI. I have been sent home with more estrogen replacement and thyroxine. I am constantly tired and suffer extreme headaches. My life has dramatically changed over the past two years. I have resigned from my work as a computer programmer. I have withdrawn socially and spend most of my days alone and depressed and feel really helpless with this condition that no one seems to be able to offer me a solution to. Can anyone else out there help with or relate to these problems or offer any suggestions for recovery. with best wishes Carol Carol Wright <carola_wright_AT_hotmail_DoT_com> Perth, WA - Sunday, August 17, 2003 at 00:02:28 bueno yo quiziera saber de acerca de los tumores pituitarios,mi hermana tiene uno en el cerebro ella podria salir embarazada ? que tan peligroso seria??? yessica LEON LIMA , lima - Friday, August 15, 2003 at 19:14:25 bueno yo quiziera saber de acerca de los tumores pituitarios,mi hermana tiene uno en el cerebro yessica LEON LIMA , lima - Friday, August 15, 2003 at 19:13:08 Hi there..just diagnosed on Wednesday with a 2cm tumor on the "Pit". They say it is encased around one carotid atery and partially on another. Everything else looks fine. I actually went for an MRI for a fatty lump in my right cheek so this was found as a surprise. I am 36 otherwise healthy-long time (2-3) years symptoms of menstrual irregularities,acne, some fatigue and not much in the way of headaches or any vision problems. Can anyone else shed some light on what I might expect? Anyone at all? I have a husband and young *** and this has had me in tears and I am so, so scared. Much appreciated and feel free to e-mail me. CLK <acihouse_AT_yahoo_DoT_com> West Palm Beach, FL - Friday, August 15, 2003 at 13:40:47 Hi there..just diagnosed on Wednesday with a 2cm tumor on the "Pit". They say it is encased around one carotid atery and partially on another. Everything else looks fine. I actually went for an MRI for a fatty lump in my right cheek so this was found as a surprise. I am 36 otherwise healthy-long time (2-3) years symptoms of menstrual irregularities,acne, some fatigue and not much in the way of headaches or any vision problems. Can anyone else shed some light on what I might expect? Anyone at all? I have a husband and young *** and this has had me in tears and I am so, so scared. Much appreciated and feel free to e-mail me. CLK <acihouse_AT_yahoo_DoT_com> West Palm Beach, FL - Friday, August 15, 2003 at 13:38:01 I was first diagonosed with a prolactin secreting pituitary tumor in 1984. I had surgery and the tumor was removed. 7 years later, the tumor had returned and was larger than it originally was. Only this time it was not a prolactin secreting tumor so it never showed up in bloodwork. I was not feeling well and went for an MRI. I had surgery a second time and follwed that up with radiation therapy. I have been unable to have children. I currently taking synthroid, DDAVP and medications for depression. I was on hormone therapy for 20 years and have now been told that it is not good for you so I have stopped hormone therapy. I feel that there are alot of correlations with my pituitary history and my emotional well being. I would love to hear from anyone who has experienced the same issues. Cathy Cardoza <WCcardoza_AT_aol_DoT_com> Chula Vista, Ca - Thursday, August 14, 2003 at 18:50:53 My horse, who has been a member of our family for twenty-five years, developed Cushings five years ago. I did not give her any drugs, but tried DMG (dimethylglycine) and multiple vitamins and herbs, with high doses of vitamin C and E and vegetable-source enzymes. This slowed it down, but did not eliminate the symptoms entirely. I added Vitex to her formula six months ago, and she is now symptom-free. Humans and horses have similar endocrine gland function, so I assume it would also work for humans. Jan Cardiff, CA - Wednesday, August 13, 2003 at 04:45:41 I am 28 years old and I have been recently diagnosed with a 5mm pituitary adenoma, and to make matters more complicated they say I have an 8x14 cyst in the sphenoid sinus. It all started when I got mono in January of 2003 and was misdiagnosed as having allergies. I then continued getting reacurrent illnesses every 6 weeks in which the doctor's said they too were alergies until the end of May. I had gotten really sick at that time and had found a doctor that actually wanted to help me and he did some routine blood work and found that I in fact did have mono. That's where it all started, I was being treated for mono and I wasn't getting any better this time. So the doctor sent me to an infectious disease doctor and he said it wasn't the mono that made me feel so bad. He then suggested that I could have Lupus or Fibromyalgia, but after testing he said it wasn't either of those. He then questioned my menstral cycle and why hadn't I had a period in 2 years. I never even thought about it truthfully, I just thought it would come eventually! So he ordered an MRI based on amenorhea and headaches and that's when it happened, the news of the tumor. Since then I have under gone more blood tests and am awaiting the results currently from the Endocineologist. The symtoms I have leave me feeling alone, depressed and worried of not knowing how to deal with them and if they are caused by the tumor. In some ways I feel like I'm crazy and why isn't there a day where I feel good? I have terrible headaches, memory loss, confusion, insomnia, muscle weakness, fatigue, vision problems, dizziness, abdominal pain, weight gain, amenorhea, no libido and the list goes on. So that's when I seen this web site, I read a lot of the stories and I hope that maybe someone might have alot of my symptoms and could tell me how to cope with it. I am truly amazed by the people that have written in here and their courage to fight and at the same time help other people. I guess I am lucky in one area, I had all my children when I was a teenager because they said by age 25 I wouldn't have been able to have them. But I am a proud *** of 4 healthy kids and the sad part is though they give me so much joy, I feel as if I am unable to spend just 1 day with them where I'm not sick. So maybe if anyone can help email me, thank you for all your time. Christie Christie <hooch74cr_AT_msn_DoT_com> Las Vegas, NV - Wednesday, August 13, 2003 at 02:03:10 I have hypothyroidism,empty cella symdrome,asthma,severe migrains,high blood pressure,and depression.I don"t any are conected.It gets tiring going to the doctors all the time.Oh ,I am 36 and going thrugh menopause also.The nero said empty cella is a benign condition,reg doc said cause of headache.Had cartoid doplor,MRI,CT scan in Dec.Had what appered to be stroke. Turned out to be migrain.My problems are not as severe as some of you and my heart goes out to you ,as do my prayers.It is just nice to vent some where. Janine <jasu67_AT_aol_DoT_com> Smithfield, N.C - Monday, August 11, 2003 at 10:11:42 ON MAY 7 2000, I HAD A PITUTARY ADNOMA REMOVED WITH OUT ANY PROBLEMS. I WAS ONLY IN HOSPITAL THREE DAYS. UNBELIEVABLE!! RICHARD CARLSEN <rcarlsen_AT_adelphia_DoT_net> CAMARILLO, CA - Sunday, August 10, 2003 at 15:42:50 Dear Don, sorry about your wife. She need confirmation for her health problem so that it could be fixed and she can lead the normal life. Medications do help us. Me, having pituitary and pituitary related diseases; taking several medications really help us. Pls keep on giving support to her, maybe find a doctor that can rectify her problem. Regards. Ina Hasan <iiinahasan_AT_hotmail_DoT_com> Kuala Lumpur, Malaysia, - Saturday, August 9, 2003 at 12:16:49 Im 34 and I have a hysteromy,after doing a *** exam I squised my *** to discover a milky discharge.I was totally in shock because in 97 I had a hysteromy.I thought could I be pregant?Then I thought could I have *** cancer?Now I'm due to get a MRI at first the doctor made it sound like no big deal.After reading I can't help but be scared to death.It's not the first tumor Iv"e had removed I had fibroid tumor thats way I had the hysteromoy in 97. Renae <petition_AT_mindless_DoT_com> shelton, WA - Friday, August 8, 2003 at 19:30:32 I was diagnosed with pitutary macroadenoma and high prolactin level.Want your advice about medicine Ahmed El negery <elnegery3899_AT_hotmail_DoT_com> Damietta, - Thursday, August 7, 2003 at 04:08:52 Will undergo the IGF1 program in Las Vegas. I am interested in finding out about incidence of side effects, i.e. fluid retention, hypertension, carpal tunnel Hanneke Hops Hanneke Hops hhops_AT_sbcglobal_DOT_.net, CA - Wednesday, August 6, 2003 at 01:24:51 I just found out my *** has a granuloma tumer on her lung, adn was trying to find out hat it is. Any help? Thank you. Barb DeBold <butterbug183_AT_aol_DoT_com> hagerstown, md - Saturday, August 2, 2003 at 12:41:12 My brother, Tom, has been diagnosed with a caancerous tumor that surrounds his corroded artery. Has anyone found a surgeon willing to try and remove this. He has already been radiated and that might not be a viable option because of his weak tissues. We are running out of time quickly. Any advice appreciated. God Bless! Jim Jeselnick <nick23_AT_niia_DoT_net> Chesterton, IN - Thursday, July 31, 2003 at 00:08:39 I'm 29 y.o. Had a baby in Feb. 2003. I never breastfed, but have not had a period and am lactating. My first blood test indicated elevated hormone levels. I have to have a repeat test and if they're still elevated a CT scan. I also take Paxil for anxiety. Has anyone had a similar situation or have any words of advice. Motherhood is wonderful and I knew I'd have surprises,but this was not one of them. Thanks,Kim kim t. <kct1_us_AT_yahoo_DoT_com> new kent, va - Tuesday, July 29, 2003 at 12:33:08 HI ALL, I WAS DIAGNOSED WITH A BRAIN TUMOR IN MY PITUITARY IN 1974. I WAS 9 YEARS OLD AT THE TIME. I SUFFERED WITH SEVERE MIGRAINS & DOUBLE VISION. MY PARENTS TOOK ME TO ALL KINDS OF DOCTORS. EVENTUALLY I WOUND UP AT MOUNT SINAI HOSPITAL. AT FIST THE DRS. WHO DID THE TEST SAID THE TUMOR WAS IN THE BACK OF MY NECK. SO MY PARENTS SAID OK TO THE 8 HOUR OPERATION. WHEN IT WAS OVER THE DR. TOLD MY PARENTS THERE WAS NOTHING IN THE BACK OF MY NECK. SO I WENT THROUGH MORE TESTING. FINALLY, A DR. MALICE DETERMINED THE TUMOR TO BE IN MY PITUITARY. SO I HAD ANOTHER 12 HOUR SURGERY. I WAS VERY FORTUNATE, I WAS THE 1ST PERSON TO HAVE A TUMOR REMOVED MICROSCOPICLY. MY SIDE EFFECTS WERE MINIMAL: I AM HYPOPITUITARY, HYPOTHYROIDISM, DIABETES INSIPIDUS AND A FEW OTHER PROBLEMS. I WROTE THIS SO THAT I COULD GIVE HOPE AND FAITH TO OTHERS WHO ARE DIAGNOSED WITH TUMORS. THANK YOU FOR READING MY STORY. DARLENE OZONE PARK, NY - Tuesday, July 29, 2003 at 08:14:57 My grandmother is in the hospital and had to have a M R I and now her doctor says she has to get a type of surgeory done to her corotic artery and has a 50-50 chance of living, and she is refusing to get the surgeory done. If she doesn't get the surgeory done, she will die in time. How do I convince her to get this surgeory done and out of the way before she dies because of her fears? Please let me know. Sincerely, Joni Joni Prater <rjst_AT_modempool_DoT_com> Jackson, MI - Sunday, July 27, 2003 at 20:45:03 Hello everyone, Keep going. I was diagnosed with a macro adenoma about 2 months ago and I think about 5mm. Showed up on a MRI scan. I believe I have had this for years. Always joked about getting headaches every day and that was part of life. I have had many other symptoms too. The episodes, moods, emotions. I am now on Cabergoline (destinox (something like that) This is helping to control my episodes and I am much better to be around (I am nice helen). Recently had my blood sugar levels checked as well as this may of contributed. I ended up having 5 blood tests in five hours everyone elsse had two blood tests in two hours. Awaiting these results. The medication does seem to be helping and my first few blood tests have positive results.Life seems altogether more postitive although I do realise I am still on a journey and still along way to go. This site really helped me in the beginning in that time of panic.I make sure I take time to relax and where I work has been really supportive giving me some time off whilst under treatment. Keep going everyone.Your not the only one. helen kempsell <helenkempsell_AT_hotmail_DoT_com> - Sunday, July 27, 2003 at 18:50:41 Hi, My wife has recently been diagnosed with a PARS INTERMEDIA CYST. She insist that it is because of some medication(Rifamfin inh) she took over 15 months ago when she showed positive for TB. She took it for 4 months. Every doctor she has seen says that it probably was not this medication. The MRI results we got back for her Pituitary said that the "possibility of this CYST being of NEOPLASM cannot be excluded but is believed doubtful." But My wife is still very upset about this. She yells at me every day and does not listen to anything I say to try and calm her down. She just keeps telling me I dont understand, and I guess she she is right. I dont know what to tell her or do for her anymore. Is there anyone who can help or is in a similar situation? Or is there anyone who knows what I can do or say to my wife? Don <dlduty2001_AT_yahoo_DoT_com> Fort Drum, NY - Sunday, July 27, 2003 at 09:47:06 just looking for some support i feel so alone and have no one to talk to about this. i dont know much about it all. helen burgess <hmburgess2003_AT_aol_DoT_com> pensacola, fl - Friday, July 25, 2003 at 02:10:27 Hi everyone! I went to see YET ANOTHER neurologist today in the hopes of figuring all of this stuff out. Anyways, the neuro check went fine, like normal. I told her I was refusing the eye exam due to the light seems to induce the "episodes". She seemed a little peeved about it, but kept on with the exam. She said the scans I brought in were "unremarkable", even the CT scans that "showed" something in the L cavernous sinus (which she never addressed what that was, and the endo said last Friday that she thought it was just "artifact"...go figure!!) The neuro doesn't know what she is supposed to do, since I've seen a handful of neuro's in the past and had EEG's and neuro checks already. I said I'm not sure either, but unfortunately all of the symptoms are staying the same or getting worse or new stuff is coming on (like "dark spots" and "lights" in my peripheral vision). She agreed to do another MRI (since it's been over a year and I haven't had one since the twitching and the *** D/C started). She wants to concentrate on the pituitary and the temporal lobes. She wants it with and without the GAD, which I can understand, BUT, I'm very worried about the GAD since I had so much trouble with it in the past bringing on the neuro stuff. I'm almost thinking about telling them I'm not going to have the GAD UNLESS the find something on the MRI and want to clarify it. The neuro also sent for a consult with an epileptic specialist so he can look over my EEG's and scans and see if he knows of any other tests that can be done, since she doesn't think the neuro stuff is just aura from a migraine. She thinks that there still might be some "seizure-like" prob going on. I'm still waiting on my latest prolactin level, but the neuro agrees with the *** D/C, another MRI concentrating on the pituitary would be appropriate. At the end of the appointment I just broke down and started to cry (which I normally don't do!). I'm just tired of the headaches and all of this!! I'm NOT crazy!! I'm NOT making this stuff up!! I just want answers...I want a diagnosis so I can get "fixed". I have the MRI scan set up for July 29! I know this sounds bad, but PLEASE...everybody keep their fingers crossed that something pops up on the MRI...at least I can have something to show for all of this crap that I've been going through and can rub it in the Dr's faces!!! I'll keep you posted!! Kathy (LabSci2_AT_aol_DOT_com) Kathy <LabSci2_AT_aol_DoT_com> Oak Creek, Wis - Wednesday, July 23, 2003 at 20:02:47 Hello! Things have progressed since my last posting. I was diagnosed with a 7 mm pituitary tumor. My prolactin level is around 87 - not terribly high but enough to cease my menstrual cycle. I was first referred to a neurologist for a consult and was then referred to an endocrinologist. I've just started on bromocriptine which will hopefully bring my prolactin level down. I am 30 years old and VERY ready to start a family so I'm anxious to get back to normal. The bromocriptine is a little funk-a-delic and is taking a little getting used to. It's been less than a week and my dosage is being gradually increased. I am happy to say I haven't experience the nausea and dizziness that many experience - only some drowsiness, headaches, and aversion to certain foods (coffee for instant). For those of you recently diagnosed - HANG IN THERE. It took over a month and a half to get diagnosed, get the insurance processed, and get appointments with the appropriate specialists. The waiting was absolutely the worst of it so far. If you have a similar situation and feel the need to vent, I'd be happy to listen - jot me an E-mail! Have a good one. Kelly Rogers <krogers_AT_jea_DoT_net> Gainesville, FL - Tuesday, July 22, 2003 at 17:09:08 I found this site very helpful, plus great links to other sites like in Oregon. New info is being added as the site is undercontruction. There is a message board too. Jo www.pituitarysupport_DOT_com JO - Tuesday, July 22, 2003 at 14:15:06 Hi, I have a macroadenoma. And I am so scared, I don't want to operation. Please give me your advise. Big thanks, Tran Van Be Tran Van Be <tran_be_AT_hotmail_DoT_com> HO CHI MINH, - Tuesday, July 22, 2003 at 06:02:53 Hi everybody. I am 37 years of age. I find this website greatly useful for me, for you and us all, those who are suffering from pituitary tumor, to share information . I have been just diagnosed with pituitary macroadedoma. My tumor is 2.6cm x 3.5 cm. I was told that I wwwill have to undergo an operation to remove the tumor causing my visual fieldd reduction and double vision. I am extremely worried about that - I very much scare and do not want to be on surgery unless I am told I will die if I object the operation. I hope i will be given some kinds of medecines to take to shrink this damned tumor. I would very very much apppreciate any information from you all. My email address is tran_be_AT_hotmail_DOT_com TRAN VAN BE (MR) 28, #3, LO H, KHU DAN CU BINH HUNG, BINH HUNG, BINH CHANH, HO CHI MINH CITY, S.R OF VIETNAM Tran Van Be <tran_be_AT_hotmail_DoT_com> Ho Chi Minh, - Tuesday, July 22, 2003 at 05:20:07 Hi everybody. I am 37 years of age. I find this website gratly useful for me, for you and us all, those who are suffering from pituitary tumor, to share information . I have been just diagnosed with pituitary macroadedoma. My tumor is 2.6cm x 3.5 cm. I was told that I wwwill have to undergo an operation to remove the tumor causing my visual fieldd reduction and double vision. I am extremely worried about that - I very much scare and do not want to be on surgery unless I am told I will die if I object the operation. I hope i will be given some kinds of medecines to take to shrink this damned tumor. I would very very much apppreciate any information from you all. My email address is tran_be_AT_hotmail_DOT_com TRAN VAN BE (MR) 28, #3, LO H, KHU DAN CU BINH HUNG, BINH HUNG, BINH CHANH, HCMC, S.R OF VIETNAM Tran Van Be <tran_be_AT_hotmail_DoT_com> Ho Chi Minh, - Tuesday, July 22, 2003 at 05:16:23 microadenoma diagnosed 14 months ago - prolactin level 147, MRI measured tumour _AT_ 8mm; prolactin going up again (sore, swollen breasts, menstrual irregularity, headaches, mood swings, NO libido, etc) ... I'm 37 & want a child but am terrified I'm infertile too. joy orange, nsw - Monday, July 21, 2003 at 23:49:13 prolactinoma/cushings disease curently fighting insurance company to cover the surgery, after 6 monthes of unsuccessful drug-therapy megan moran <meganmoran69_AT_msn_DoT_com> pittston, pa - Monday, July 21, 2003 at 20:49:31 Thank you for your on going research! I miss being in MA where my care was far better than anything I've experienced in MN so far. I'm hoping that you could foster a relationship in the Midwest where even my General Practioner says there is a need for Pituitary/Endocrine Drs. in the Minnesota/upper Mid-West region. U of Mn and The Mayo is not the same As MGH and Brigham Womens in Boston/MA! Ann M. Maslansky-Takahashi <Japanann_AT_comcast_DoT_net> Shoreview, MN - Saturday, July 19, 2003 at 18:36:45 Hi, I am 29 years old female. Three days ago I have been diagnosed with a pituitary microadenoma (based on my MRI and blood results). From what I gather, I probably have a thyrotropin-secreting pituitary microadenoma (I have most of the symptoms, including hyperthyroidism). I understand that this condition is very rare. I would like to correspond with someone with the same diagnosis. Wishing you all quick and painless recovery! Yolanda <Soleckiy_AT_comcast_DoT_net> Chicago, Il - Saturday, July 19, 2003 at 13:30:07 Pituitary Comrades, I have gain 30 pounds since by "golf ball" was removed last year. I have never had to loose weight before and could use some practical advice. My ENT says eat less, but I have not changed my eating habits in years. The weight gain is related to the pituitary loss. To Your Health, Larry Larry Earnest <learnest_AT_joimail_DoT_com> Chino Hills, CA - Friday, July 18, 2003 at 10:54:18 Wanted 2 find out more abt the pituatory gland n what happens if it malfunction. mohana <cptpraba_AT_singnet_DoT_com_DoT_sg> singapore, - - Thursday, July 17, 2003 at 11:33:32 i found out i had a pituatary gland tumor (none cancerous) about 2 years ago when i was 20 years old. i am on dostinex cause apo bromocriptine gave me bad side effects. i was just looking for some info about the operation and other peoples side effects and about having kids....please write tish <tishy_poohster12_AT_hotmail_DoT_com> new liskeard, - Wednesday, July 16, 2003 at 19:57:06 Hi everyone! Just wanted to update anyone wondering where I am at, after my MRI in May and an "unconculsive" result, my endo has put me on Parodol. Since being on this drug, my prolactin level has fallen from the 130's down to 28! I've also lost 10 pounds, am NOT tired all the time, and have just gotten my period for the first time in 2 years! Although as of right now, they are saying I do not have a pit tumor, they are saying that I have PCOS. Also, they have discovered that I have an insulin resistance. My endo is treating me with Metaformin (I think that's how it's spelled). Although I was extremely sick at first from the meds, I am happy to report that it's been 7-8 weeks since I've been on everything and I now feel great. My next big hurtle is going to be getting pregnant. There is lots of encouraging words that even though I may or may not have a tumor, I should hopefully be able to get pregnant. I am going back for another MRI to re-check everything in Novmember. Good luck to everyone and hang in there! Amy <amymarie1224_AT_hotmail_DoT_com> Mukwonago, WI - Wednesday, July 16, 2003 at 09:57:50 I have testosterone deficiency. I am using Andro Gel 10 gm's applied every day. My testosterone especially the "free" and am not well. Please help ! James Gussman <jGussman_AT_comcast_DoT_net> Randolph, MA - Tuesday, July 15, 2003 at 17:37:21 It's amazing how something so insidious is so unknown or heard of in the real world! Try to explain to people your problems and the next thing you know your on a major diet and lying on a phycs couch! How could you be so stupid as to think their is something physically wrong with you! And what blows me away is the number of GP's that know dick about it ........Hmmmm! I have a pit that was discovered in 1985 that was almost 7 CM in size with a prolactin level of in the area of 20,000. My GP said I was depressed...! Gotta wonder dont you! Lets see lost my eyesight in my left eye ,severe facecial pains ,disorintation,severe headaches, depression , weight gain. Would you think something was wrong? So here I am in 2003 with many years of misery ;radiation therapy 2 years ago , many different drugs and not a surgeon who will touch me! I will say I was very lucky to get an endo. who was tops in her field and supported me thru these years with much care. Here's one also for the guys .....listen up....This I understand is very unusual as it wasnt noted until it happened to me .Testosterone shots turned into a nightmare for me as it seemed my tumour very much enjoyed munching out on a byproduct of testostrone. So I would get a shot and my prolactine would shoot up and the tumor would grow .Can't say as I understand it all but it was proven thru test and I couldnt take the shots anymore .So I am tired (testosterone has alot of things its involved with other then sex :) ) getting old and like many others asking Why Me! I know there are worse things in life but this has sure been a roller coaster ride ; one that I want off of!!!!!!!!! And I Still Ask the Question "Why the Secret". It would be nice to have some understanding like cancer patience get. All the best to you pit people! John <jldy_AT_shaw_DoT_ca> Van. B.C., - Friday, July 11, 2003 at 22:33:21 Hi, I am a 30 yr old female with hyperprolactemia. I was diagnosed in 1994, but have suffered noticeably since about 1992. My period started very late in life and when it did come, it went from 5 days to 3 dys to 1.5 days. In 1992, after a miscarriage, I breasts began to lactate and I always had severe headaches that lasted days. I was going to an outpatient clinic at the time that i really liked, so when the dr (very oldfashioned) said to stop stimulating my breasts, I did, but they continued to leak....all over my shirts, in public,etc.(very embarassing) I finally got a different dr and when I told her my symptoms, she immediatly sent me for a level test. I think it may have been about 120 then. she administered Parlodel. It made me feel "crazy". I'd wake up in the middle of the night feeling dizzy. I read up on the side effects (they all seem to effect me) and I did not like what I read so I discontinued use, but still had a period. I 1997 I became pregnant and now have a beautiful ***. but after the pregnancy...I began to gain weight rapidly, headaches continued in full force and my period stopped altogether. I went back to the doctor... I finally had an mri and was diagnosed with an microadenoma...I dont remember the size. I started the Parlodel again but it made me feel horrible. My dr wasnt very familiar with the disease so he was of no help to me... I got frustrated and begin to look online for support. This was the best site I ever found. In 1998 I found Dostinex. I took 1/2 tablet twice per week. my period came back with no problem in about 1 month. but I did not want anymore children so I started birth control. somewhere in between 1998 and now, I stopped the meds. and restarted and stopped. I enjoyed not having a period or worrying of being pregnant. Now I have found out that my bones can suffer and I am ready AGAIN to resume the meds. I am sheduled for am MRI on monday and see the Endo dr on aug 9. I'll keep everyone posted. Oh yeah, I'd like to know about side effects. I get severe pressure in the neckline, NO LIBIDO, massive weight gain, dizziness. I sometimes see flashes of light, headaches that bother my sinus area, and when I laugh alot or strain, I get instant pressure in my head. i never thought these were related. Whats worse is my boyfriend of 7 yrs just does not understand. he thinks that I am not interested in HIM. feel free to email me or give feedback here. GOOD LUCK TO EVERYONE ON THIS SITE. U CAN HAVE CHILDREN. Avian <acrpiscesacr_AT_aol_DoT_com> greenbelt, md - Thursday, July 10, 2003 at 20:03:45 I have a pit tumor, I was wanting to see if anyone else was having problems with weight gain and having a difficult time controlling their emotions. Tammie Mann <tammiemann_AT_aol_DoT_com> Valley Mills, TX - Sunday, July 6, 2003 at 21:09:50 can a 4mm nonsecreting pituitary adenoma cause a decrease in your hormones & adrenals? lvk157 <lvk157_AT_aol_DoT_com> edgewater, nj - Wednesday, July 2, 2003 at 12:21:38 I'm the *** of a *** who is 22 years old and have been reading a lot of stories on this site about a pituitary gland tumor. She has the same symptons of a lot of you and is now on prostinex which is really working a lot better for her. January/03 is the last MRI she had and with good results. Her concern is pregnancy. She would love to hear from someone on this subject. Her specialist told her to make sure she contacts him when she is ready to start a family. Could anyone contact me about this subject? I will give you her email address when I get a response from someone who has been through this(pregnancy). It would be nice to hear from someone from Canada with this problem. Thank you so much for this site. I'm a *** with a lot of worries since I only have one ***. Thanks again. Anita Plante Little <kenani_AT_ntl_DoT_sympatico_DoT_ca> Kenabeek, - Tuesday, July 1, 2003 at 06:24:04 ok..i've read these posts forever..its finally time to start communicating with someone..i'm 30yr old female...i had been lactating for one year after my *** was born (never nursed)...i decided to report it to the doctor...blood work was taken...my prolactin numbers were slightly elevated (30) and MRI was ordered...here is where my story begins...the radiologist diagnosed a micro-adenoma and I was referred to my first endocrinologist...he never read my MRI...stated that these are highly mis-diagnosed...told me that all of my symptoms (which were simply the lactation, low libido, weight gain, occasionally acne) were actually PCSD -Polycystic Ovarian Disorder....I was very confused as to why he never read my MRI....it kept me unsettled and finally urged my OBGYN to refer me to a neurologist...he confirmed the diagnosis of a micro-adenoma and even showed it to me....he then referred me out to another endocrinologist because he felt my hormones needed to me monitored in case of any other glad problems....i drove 3 1/2 hours to see this "endocrinologist" at a University hospital....after waiting 3 hours in my room to be seen, he questions me for 3 minutes, and reports that he feels I do NOT have a micro-adenoma....but rather a mass (actually found 2 masses) on the pituatary....and feel they are no concern for growth....and IMMEDIATELY switches the conversation to diagnose me with Polycystic Ovarian Disorder AGAIN.....he did however prescribe Dostinex (he felt it would help my hormones)....the point of this posting is because I have several concerns that I would LOVE to talk to someone about...why would he prescribe Dostinex if it wasnt a tumor?? ....is this normal for these endocrinologists to *** off adenomas so often?...its soooo hard to juggle these diagnosis because if I have learned anything from this site it is to be your own advocate and fight the doctors to stay aggressive with your treatment before your adenoma grows...i'm trying to be strong..but when I visit these endocrinologists it changes my husbands views dramatically and makes him feel instant relief as to no longer consider myself to have this adenoma...i feel so lost and alone with this...i am a very positive person..but lately have just resorted to not discuss anything to anyone.....i have heard of the dangers of Dostinex with pregnancy..and im sooo looking forward to having another baby someday....is anyone out there that can relate to me??...i think i have a million concerns and could type forever... jennie <jenkeith_AT_bright_DoT_net> OH - Tuesday, July 1, 2003 at 02:06:47 I was diagnosed with a pituitary macro prolactinoma (which I lovingly refer to as my second brain :-) ) last November, 2002. Symtoms up to that point were headaches (about 12 years of them) and blurred vision (for about 2 years). No other symtoms, really (the doctors never seem to believe me when I say that). The entire proceedure has convinced me of a couple things. The US health care system as a whole, sucks. And, your health is your responsibility, ultimately. Initially, the doctor that the insurance company sent me to suggested surgery immediately. That was scheduled for January. I started looking up resources on the Internet, found that what the doctor was saying wasn't agreeing with what I was reading/being told by people with prolactinomas. I asked my "normal" doctor where he'd go if he wanted a second opinion and he said "Mayo", so off to the salad dressing clinic we went. For those of you that haven't been to a city that is actually one big hospital, you really should visit Rochester, MN. Mayo is incredible. It's huge (well, I thought it was). And the treatment that I received/am receiving there really restored my faith in the medical profession. I was placed on 5 mg of Bromocriptine, which was gradually increased to 20 mg, with a fairly unique dosing schedule. Prolactin level went from over 10k to 10 on my last round of blood work. The Bromocriptine has actually been fairly decent, I haven't had much in the way of side effects, other than the "Oh my God!" level of constipation. Phillips, I'm so glad I met ya. While I was going up in dosage, I experienced dry eyes, dizzyness, dry nose, dry mouth, more dizzyness, some vertigo, and did I say I was dizzy from time to time? Raging insomnia from time to time as well. I can't say that life is back to normal, but life is definately much better than what it was before November 2002. My first headache since January was yesterday (I think I got motion sickness, which would probably be from bouncing around while not looking outside). I used to have uncontrollable fits of sleeping (lethargic at times), and I was moody as all get out (something a guy doesn't usually admit to). Now, no headaches, I'm now a -MORNING- person, and I don't feel so, ummmm, moody (it's been commented on). Oh, and the vision is back too. I've read some real horror stories about bromocriptine and it's druggy relatives (Dostinex etc.), but I have found that most of the effects are temporary, at least with me. As my body "got used to it", the side effects went away, other than the raging constipation (insert ad for Metimucil here). I'm open for email if you have any questions. Rob Luce <robluce1_AT_yahoo_DoT_com> Racine, WI - Monday, June 30, 2003 at 06:50:49 i had an mri done 2 weeks ago the doctor found a small tumor on my pituitray gland.. i have been having really bad headaches to where it drops me too my knees so much pressure is on my right side of my face,splurgered speech,forgetting stuff,blurred vision out of my right eye. vomting,dizzyness the list goes on. i seen the neruro surgeon yesterday he is ordering 2 more mri's on my brain. i see the endocrinologist tomorrow for lab work. i am normaly a very active person this has hit me like a ton of bricks i feel tired all the time i have to take naps during the day cause i am so tired.. i wish things were back to normal i will know more hopefully later this week or arly next week.. i am up for a promotion now i think that is shot in the butt.. thing's happen for a reason. just gotta keep your head up and keep on trucking. god is always there for us.. i am now on predenisone for my migraines they are helping a little ... i am so glad there is other's that share there stories it helps thank you all.... if anyone has idea's on how too help please e- mail me or has been thru this thank you PAM pam williams <princessimahonne_AT_aol_DoT_com> columbus, oh - Sunday, June 29, 2003 at 17:02:54 I posted a little while ago when I was anxious about results and the mri has found a pituitary adenoma. Isn't it a shock seeing it written down on the report. I have had high prolactin levels and significant hair loss. The endo thinks that it's a result of the high prolactin levels. It looks really funny but that's ok. It's good to read experiences of other people with pit tumors to realise that the side effects can be a direct result and that I'm not going crazy as well as bald!! kind wishes to all of you kate <glitterfly_k8_AT_hotmail_DoT_com_DoT_au> aust, - Sunday, June 29, 2003 at 09:05:26 I am a 30 year old woman recently diagnosed with a pituitary tumor. My periods always were a little irregular (never predictable), but over about the last year and a half they stopped all together. I am overweight and thought that my weight may be the cause. I went to my Doctor and she ran a series of bloodwork. The technician called and said "You have elevated prolactin levels and we want you to go for an MRI because you may have a tumor on your pituitary gland." Needless to say, I've been on the Internet since that day trying to find out everything! I've had the MRI and the tumor was confirmed, and I have an appointment with a neuro-surgeon on July 8th. I am going out of my head right now because I have so many questions for my Doctor. How big is my tumor? What are my prolactin levels? How will it be treated? Will I be able to have babies? Will I be sent to an endocrinologist? How is my life going to change? It's a very scary time for me. I am learning a great deal from the posts and am glad to know there are others out there that understand what I'm going through. Thanks for listening. Kelly Rogers <krogers_AT_jea_DoT_net> Gainesville, FL - Friday, June 27, 2003 at 14:23:42 I was diagnosed with a prolactin secreting macroadenoma in the middle 90s. I take two .5 mgs Dostinex for the tumor and Androgel every day for my testosterone level. But I'm also Bi-Polar, have been all my life, so I've always attributed my anxiety, aches, pains, headaches, etc. to stress. After reading some of these posts I'm beginning to wonder if maybe some of it is from the tumor although I don't have an abnormal thyroid. I'd appreciate hearing from somebody who has been told by a physician that their prolactin secreting tumor is the cause of their psychiatric problems. Eric Dings <edings_AT_cpinternet_DoT_com> Duluth, MN - Friday, June 27, 2003 at 00:55:46 I am so glad to see this site. My brother had a stroke 2 years ago and AFTER the stroke, the Dr. found a tumor on his pituatary gland that had probably been there for 15 years. My brother now has NO short term memory. Thank you for this guestbook. Marilyn - Wednesday, June 25, 2003 at 22:02:38 I had a pituitary adenoma removed in Sept. 2001. Never fully recovered from surgery; never reached even close to feeling 100% "normal." Am now having symptoms of Cushings again, but all hormonal tests are "within normal range." My MRI's show a spot but drs can't tell if it's a new tumor or if it's scar tissue. All I can do is hope that if Cushings is recurring that either the tumor grows or finally something abnormal shows up in hormone testing. Anyone have similar problem? Any suggestions? Amy Steinkamp <adsteinkamp_AT_yahoo_DoT_com> Columbus, OH - Wednesday, June 25, 2003 at 08:34:59 If anyone had radiation as an infant or child and now has a pituitary adnoma, please contact me. I was irradiated just above the bridge of my nose as an infant for a birthmark and now have an adenoma AND growth hormone deficiency. Thanks. Z zzzzfemale_AT_aol_DOT_com <zzzzfemale_AT_aol_DoT_com> - Wednesday, June 25, 2003 at 00:37:49 I'M A 36 Y/O MALE. I HAVE A 4MM MICROADENOMA ON THE LEFT SIDE OF MY PITUITARY GLAND. I RECIEVED MY MRI RESULTS 2 WEEKS AGO. PRIOR TO ORDERING AN MRI MY DR. DID TESTING SHOWIMG VERY LOW LEVELS OF CORTISOL,FREE TESTOSTERONE, EPINEPHRINE, NOREPINEPHRINE, ESTRADIOL. THIS TESTING WAS DONE THROUGH SALIVIA & URINE. HE ALSO RAN SERUM TESTOSTERONE TOTAL & DHEAS WHICH CAME BACK VERY LOW IN THE REFERENCE RANGE, TSH WAS .45 (SUBCLINICAL HYPOTHYROID,MY BODY TEMP IN THE AM WAS 96-97 PRIOR TO THYROID REPLACEENT NOW IS 98.1 IN AM & 98.6 THROUGHOUT THE DAY, PROLACTIN IS NORMAL. I ALSO HAVE CHOLESTEROL OVER 300 FASTING. I SAW ANOTHER ENDOCRINOLOGIST TODAY & HE SAID THESE TESTS HAVE NO VALIDITY & MY ADENOMA IS TOO SMALL TO CAUSE ANY OF THESE PROBLEMS. I WAS VERY CONFUSED, TEN YEARS AGO I WAS AN ATHLETE IN EXCELLENT SHAPE NOW I STRUGGLE TO EXERCISE, I AM EXTREMELY WEAK, I AM 40 LBS. OVERWEIGHT( I CANT LOSE WEIGHT EVEN ON A 1000 CALORIES/DAY DIET), I AM EXTREMELY TIRED & NEED 3-4 CUPS OF COFFEE A DAY & SLEEP VERY LATE WHEN I CAN. I AM ON HRT,(TEST/PROG., CORTEF & NAT. THYROID. THIS DR. WANTS ME TO STOP EVERYTHING FOR THREE WEEKS & RETEST EVERYTHING THROUGH BLOOD SERUM & 24HR. URINE. I'M NOT SURE WHAT TO DO, BECAUSE I'M JUST STARTING TO FEEL A LITTLE BETTAR. IF ANYONE HAS EVER HAD ANY SUGGESTIONS OR HAVE BEEN THROUGH SOMETHING SIMILAR, I WOULD LOVE TO HEAR YOUR REPLAY. I CAN'T GET IN TO SEE A GOOD NEUROENDOCRINOLOGIST UNTIL AUG.28TH len <lvk157_AT_aol_DoT_com> edgewater, nj - Tuesday, June 24, 2003 at 22:41:05 Recently diagnosed with a pituitary adenoma 2x4 mm and growth hormone deficiency after trying to fix my plethora of health problems for decades. I'm on a low dose of growth hormone now, but I'm hoping that when I get up to the correct dose I'll feel and function better. Feel free to email me if you're situation is similar. Zzzzfemale <Zzzzfemale_AT_aol_DoT_com> - Tuesday, June 24, 2003 at 22:29:05 Well...I'm 3 for 3 on the psyches. I went to yet another one who said it was NOT a conversion disorder. So...as of right now...I'm pursuing any more psyches until this medical stuff gets taken care of 100%...rule in something or rule out everything. I still have the symptoms...the headaches, *** D/C, 31 prolactin level, up/down mood swings, up/down appetite, up/down sleep cycle, still going to the bathroom peeing all the time including 3-4 times a night, get cold easily....still have questions though. I've been looking up info regarding "stalk effect" and "stalk tumors". Can anyone help me out...good websites...symptoms they have, what's been found on scans and blood work, how the DR's figured it out, etc. Give the "ify-ify" prolactin level and the hypothalamic probs (sleep, appetite, cold, etc)I'm thinking that it might be a stalk tumor. The last CT scan (last June 2002) said I had a "prominent left cavernous sinus...possible pit. mass or aneurysm". The follow up MRI was "normal". How can that be??? Just 4 months earlier (March 2002) the CT scan showed a small asymmetry in the sellar/suprasellar area, with again NOTHING showing up on the MRI. Any imput regarding this mystery would be greatly appreciated...and info on stalk tumors too!! Kathy <LabSci2_AT_aol_DoT_com> Oak Creek, Wi - Tuesday, June 24, 2003 at 22:13:45 Lisa, you might try looking at our website, www.cushings-help_DOT_com. We have a helpful doctors list recommended by actual patients (they don'tpay to get on a list). I know of at least one neurosurgeon from Atlanta on the list, and I think you can find doctors in NC, too (none are listed in SC). If your tumor is that big and is not responding to medication, it should come out and your doctor should be responsive to your concerns. Lynne <Lynne-SecretaryCUSH_AT_cushings-help_DoT_com> Boston, MA - Monday, June 23, 2003 at 21:56:19 I was diagnosed with a pituitary adenoma in March of 2002. I had been having lactation from breasts and headaches for over 3 years but nothing showed up on the MRI. They had me on Parlodel because my prolactin levels were 4 times the normal range ( can't remember what that is.) I wasn't really having many side effects from the Parlodel but once the tumor was discovered in March(it was 6x6x8mm), I was started on Dostinex at first 2.5mg twice a week, my prolactin levels remained high,and I was increased to 10mg twice a week. I was and still have severe headaches, mood swings, no libido, pain and tenderness in the back of my neck, muscle cramps, etc... the list goes on and on.. I became pregnant and just as I was going into my third month I miscarried. That was a month ago. They did another MRI last week and the adenoma is now more that double it's size. 1.45x90x1.10CM. I want this thing removed but my neurosurgeon does not seem to care about my symtoms, just says they are "side" effects and to continue to take the medicine and have a repeat MRI in 3 months. (Since it's not pressing on my optic nerve "yet") I don't want to wait until it does. I'm thinking of seeing a surgeon who specializes in the Pituitary. I'm just getting really frustrated with these doctors playing with my life.. If anyone has had the surgery and would like to share their experience please e-mail me.. Also if you know any really good specialists in the Atlanta area please let me know... Thanks Lisa <cherokeechick32000_AT_yahoo_DoT_com> Anderson, SC - Monday, June 23, 2003 at 15:19:12 I am sorry to all my dear friends for all your problems. Thanks to MGH Harvard for organising this active website, your support helps us a lot. I am having Diabetes Insipidus for the past 15 years. For the past 6 years, my endocrinologist found out that I am also losing most all of the hormons. Besides the DI, I am also Hypopituitary, Hypothyroid and Hypocortisol. I am on several medications and doing fine. I still owe a great thanks to my endocrinologist team in assisting me. I know, how it feels having to face haywire body systems, it's not easy. Take care to my all of my dear fellow friends. Ina Hasan <iiinahasan_AT_hotmail_DoT_com> Kuala Lumpur, Kuala Lumpur - Saturday, June 21, 2003 at 11:30:06 I'm just starting a new website - I hope to include a lot of info on pituitary disorders, readers personal stories, advice etc. Its in its VERY early stages, but I'll be updating it soon. Take a look and any feedback would be grateful. By the way - I had my pituitary gland removed when I was 11 - I am now 33. Thanks - Andy. [www.andywride.co.uk] Andy Wride <webmaster_AT_andywride_DoT_co_DoT_uk> - Friday, June 20, 2003 at 11:07:20 Hi everyone, I'm Raven, I was just diagnosed with a 6mm producing microprolactinoma, located on the right anterior lobe. I just turned 36 last month and i have not felt good for over 5 years. I have gained over 60 pounds in the last 5 years, insononia, chronic anxiety, phobias, ect. a list of other various weird conditions. I have a prolactin level of 60 as pf last week. I do have headaches at times, I feel pressure in the right temple area and behind the right eye at times and have for years. I am to start Dostinex this eve. I am scared of it! Any helpful tips would be appreciated.. I will be going for my second opinions in the next month or so to UCSF San Fransisco. I have researched and found endocrinologist DR. Blake Terryle and nerosurgeon DR. Sandwar Kundeep. Sandwar does aprox. 4 pitutary surgies a week. He was hand picked by a DR. Wilson also a nerosurgeon, who was the best on the west coast. Unfortunatly he retired this year. I will think and pray for all of you!!! Good Luck..and please if you have any good advise please e-mail. Thanks for listening.Your new friend and fellow commrad RaVen RaVen <ravenblack3_AT_earthlink_DoT_com> modesto, ca - Friday, June 20, 2003 at 10:10:48 I am so glad I have now found this site. I had a pituitary adenoma removed in December 1999 was told couldn't have any more children (now I have a lovely 2 year old ***) but have gained a tremendous amount of weight. Still on medication but am glad that I can relate to an awful lot of other people out there. Take care michelle <micmac0403_AT_aol_DoT_com> glasgow, - Friday, June 20, 2003 at 07:59:15 hi again, I did not give the coeesct e-mail address on my posting.It is as shown above RaVen <ravenblack3_AT_earthlink_DoT_com> modesto, ca - Thursday, June 19, 2003 at 21:36:12 I am 44 and after taking Parlodel and Dostenex for 8 yrs. for a pituatary tumor, I underwent surgery a week ago. The doctors were worried about my losing my vision if I didn't. It was a very scary ordeal to me, as I am otherwise very active and healthy, and had only been in the hospital to birth my 3 children. Even then ,I had never been put to sleep! I made it through fine,they say. I am home recovering and doing OK. I have had diabetes insipidus and of course its very difficult to sleep because I can't breathe through my nose. How long do these things last? I am now on the nasal spray for the d.i. which helps, but I feel like if I could just *** my nose, I could breathe alot better! Vicki Spring <vwspring39157_AT_yahoo_DoT_com> Ridgeland, MS - Tuesday, June 17, 2003 at 21:03:04 I have a pituitary adenoma that i have been living with for years. The doctors are not sure when it started to develop or why. I have had 4 mri's checking on its growth. It has grown significantly downward. not toward the optic nerve, i am happy. I am trying to have surgery to remove it soon. It wrecks havoc on hormones and i just want it gone so there is no chance that it will grow up toward to optic nerve. Well, i just needed to vent. Madeline <maddie1976_AT_yahoo_DoT_com> erie, pa - Tuesday, June 17, 2003 at 18:30:32 I was just diagnosed with a microadenoma today, June 18, 2003. I have had irregular periods for over a year now, ever since I went off birth control pills. Also I have discharge from my breasts, I've gained ALOT of weight and could never figure out why, I'm overly tired and moody alot. I now have to see an endocrinologist but can't get in to see him until September. I'm furious! My entire life feels like it's been put on hold until September. Anyway has anyone else felt like maybe the pill could have caused their problem? I've also been diagnosed with a uterine fibroid. Could this have any connection to my prolactinoma? Any info will be greatly appreciated. Dawn <dawnrstephens_AT_netscape_DoT_net> PA - Monday, June 16, 2003 at 22:31:21 What is the treatment for Chushing Syndrome Dennis Hausman <dbh_AT_attbi_DoT_com> Olympia, WA - Monday, June 16, 2003 at 18:11:44 I need to have my pituitary tumor removed surgically. Has anyone had the Endonasal Surgery? I am looking for a doctor with good experience. Please contact me urgently. Katrina <rogerkaiser_AT_hotmail_DoT_com> Salina, KS - Sunday, June 15, 2003 at 22:58:10 Thanks for making this valuable forum available. Charles Niall de Mailloux <cnialldem_AT_yahoo_DoT_com_DoT_sg> - Friday, June 13, 2003 at 05:23:13 I had a mri done 5/03 and it came back saying that I have a large adenoma of the pituitary gland, approximately 2cm in each dimension. My family dr scheduled me an appoinment with a neuosurgeon at the end of this month. Could someone help me with some questions to ask him on my visit? My symptoms have been mostly pressure behind my eyes,flashes of light,dizziness,loss of concentration and trouble pronouncing words sometime, this is what prompted my mri. Over the past year i've battle with weight gain(30lbs in 2mos, high blood pressure(but off of the pills now),low iron(off of the pills now), I missed my period in Jan thought is was strange since I haven't missed one since it started but it came on in Feb.,dizziness after I eat, nausea and the list goes on. I was told a few yrs ago I just have enviromental allergies! I haven't been depressed or suffered mood swing thats good. I've spent so much money on medication that I didn't need and not to mention dr visits. I'm nervous about what's ahead for me. Thanks for this web-site. Alisa <alirood_AT_aol_DoT_com> san antonio, tx - Thursday, June 12, 2003 at 20:00:42 my sister had cushing , she was diagonosed at seveneen, she had two explortory surgeries and finaly had her adernal gland taken out with the tumor on her pitituary gland , she died last november, from several complications , due to her problems . june 13 is her birthday , she would have been 54. donna <nanadonna56_AT_earthlink_DoT_net> muncie, in - Thursday, June 12, 2003 at 02:46:08 Hi everyone...just thought I'd give a summary of what happened at my endo and neuro appointment (May 29 and 30). Both DR's are at Froedert Hospital. The endo (Dr. Mass) was really nice. She listened, and aksed questions of me and vice versa. She really seemed interested, and a little puzzled why no one had suggested seeing an endo all during the last 1 1/2 years I'm been going through this. I still have the *** discharge, so she ordered another prolactin level (which came back at 31...it was 10 in May 2002) and a GH level, which hasn't come back. She talked about having another MRI since by last one was back in June 2002. Also maybe a mamogram, because of the family history of *** cancer. She also took my films to look at them since the last CT I had in June 2002 mentioned a "prominent left cavernous sinus...possibly an aneurysm or pituitray mass"..and she wanted to double check it. The next day I saw Dr. Blindauer, the neuro..totally different experience. She was cold and had her mind made up after looking at the notes from the last neuro, saying it's a "conversion disorder". She induced an "episode", slurred speech, right sided weakness, left sided and head twitching...and to make a long story shorter...I was admitted into the hospital. I lost control of my bladder immediately after the "episodes". The neuro and psych DR's cracked jokes half the time, saying "she also thinks she has a pit tumor", and "of course she's bound to have an abnormal lab value..if you keep checking things long enough, it's bound to be out of range sometime". I couldn't move most of the time, I was having 2-3 "episodes" every day, I was peeing all the time and having to sit in the wet "diaper" they put me in. On top of things, I lost consciousness with most of the "episodes", which is a new thing for me, and had REALLY AWFUL dizzy spells and eye probs this time. I was "kicked" out of the hospital a week later, since "there was nothing else they could do", even though the only test they did was a repeat 24 hr. EEG, also the fact that my insurance wouldn't pay for any more days. I still couldn't talk right or walk by myself when I was discharged. I'm doing better now. Can walk and talk, but still have 5 or 6 "inside" headaches, really fatigued with the smallest amount of activity, minimal appetite, and continued bad dizzy spells and a "medicine head"-type feeling despite having NO MEDS on board!! Anyways, just thought I'd post. If anyone is interested in the FULL story and details, just e-mail me..I'll send you the detailed e-mail back. KATHY (LabSci2_AT_aol_DOT_com) Kathy <LabSci2_AT_aol_DoT_com> Oak Creek, Wi - Wednesday, June 11, 2003 at 23:49:03 HI. I AM 22 YEARS OLD AND THINK I MIGHT HAVE A NON-SECREATING PITUITARY TUMOR. THE REASON I THINK I MIGHT HAVE ONE IS BECAUSE I PRESENT MANY OF THE SYMPTOMS OF HYPOTHYROIDISM. LAB TESTS SHOW THAT MY T4 AND T3 LEVELS ARE USUALLY IN THE NORMAL RANGE BUT MY TSH IN CONSISTANTLY BELOW 0.06, WHICH CONCERNS ME. HAS ANYONE ELSE HAD LOW TSH LEVELS WITH THEIR PITUITARY TUMORS? ANY INFORMATION WOULD BE GREATLY APPRECITATED. THANKS! Amanda Farrow <TinCricket_AT_chartermi_DoT_net> Midland, MI - Wednesday, June 11, 2003 at 13:15:40 I came across this web site while searching for information Yonda Fletcher <Yonda_AT_poetic_DoT_com> Jamestown, SC - Tuesday, June 10, 2003 at 20:10:54 Would love to hear from anyone who has had pituitary tumor removed and then had it recur. This may be happening to me. Need Advice!!! Thanks. Amy Steinkamp <adsteinkamp_AT_yahoo_DoT_com> Columbus, OH - Tuesday, June 10, 2003 at 14:41:51 Has anyone experienced miscarriage, adhesions, endometriosis, benign uterine tumor, ovarian cysts or other reproductive disorders while taking Dostinex? LeAnn Lee <lrlee_AT_mail_DoT_com> Vicksburg, MS - Tuesday, June 10, 2003 at 11:41:36 Great Site Thanks Linda Meek - Tuesday, June 10, 2003 at 06:02:59 Your website is a great resource. Thank you and keep up the good work. Tommy Vercetti <85ohorr02_AT_sneakemail_DoT_com> - Tuesday, June 10, 2003 at 01:53:15 I was diagnosed with a pituitary tumor 9/01 and had surgery 11/01. I am continually being monitored by my endocronologist. My surgeon told my family following surgery that he got it all, and then once I received my MRI results following surgery it was discovered to be the same size, but he in fact did clear the obstruction from my optical nerve. I am now told that the larger part of the tumor is on the artery side and nothing to worry about. Well, I am concerned and my doc isnt. Andrea Lee Mosley <Andrea_DoT_Mosley_AT_us_DoT_konecranes_DoT_com> Castro Valley, CA - Monday, June 9, 2003 at 15:19:50 I was diagnosed as hypopituiary in early 2002. I have no FSH/LH levels and have central hypothyroidism (we only check Free T4 levels as with central hypothyroidism which is a pituitary disease, TSH levels have no meaning.) My MRI's which have only been read by local radiologists show irregularities in my pituitary shape and size but no tumor. I have been unable to find anyone who could recommend an endocrinologist anywhere in Michigan who is any good with hypopituitarism based on what I have been told by persons suffering with hyperpituitarism. Thankfully, I have a wonderful family doctor who tries very hard to monitor my estrogen and thyroid levels -- but getting them to levels where I feel normal is one big nightmare of trial and error. Is there anyone out there who is hypopituitary and would care to correspond and maybe we could learn from one another? The worst of it all for me is the extreme exhaustion I feel. I also have severe untreatable high very volatile high blood pressure and multiple allegies to medications and other items. Thanks for any help anyone can give. I am about to go back to my family doctor next week and ask that my pituitary levels be run again. However, no one even knows how to actually read growth hormone levels. Thanks for any help anyone can give. MaggieFuss_AT_aol_DOT_com Maggie <MaggieFuss_AT_aol_DoT_com> Jenison, MI - Monday, June 9, 2003 at 00:01:47 God bless you Jennifer - Saturday, June 7, 2003 at 00:54:38 What happens if I start taking bromocriptone, do my *** change, do I need to avoid hormonal birth control methods? Liz Spencer <lizelizard_AT_comcast_DoT_net> Goose Creek, SC - Friday, June 6, 2003 at 15:20:45 Hi! I am 31 years old and was diagnosed with Hyperprolactima in 1995. My symptoms were the stop of my periods along with weight gain and terrible headaches, those were just a few of them but the most important ones. I did have my tumor removed back in 95 but had to still go ont he Bromacriptine YUCK!!!!! After a few years I stopped taking it because it made me feel horrible. I continually have prolactin checks as well as a MRI every 2 years. About 4 years ago I started taking Dostinex and I did not react very well to that either. I would take a pill on a friday and then by Monday I may be able to function. Not a pretty sight and an even worse feeling since I am a very outgoing person. When I was first diagnosed with my tumor I was told that I would never be able to have children, Let me tell you that is one of the hardest things a person can hear. But they were wrong because I now have a wonderful *** who just turned 3. So if you have been told you will never be able to concive don't give up hope. But my main reason to write today is because I have been having more and more symptons coming back and have been scheduled for an MRI in the near future. Has anyone found a drug that does not make you feel crappy when you take it?? I am worried that the levels will require me to take the meds again and I just can't find anything good about that? Jessica <bjchall2000_AT_mchsi_DoT_com> Des Moines, IA - Thursday, June 5, 2003 at 13:34:05 6 Weeks ago I accidently found out I had a large pituitaary adenoma . It was compressing my sinuses and my eye so I was having debilitating headaches . I had no choice but to have surgery done. and they could only get 75% of it out . I must now go for radiation therapy to remove the rest. It was not a nice surgery and I felt horrible for a few weeks but after fadiation they say I will be cured. If you need surgery look for a neurosurgeon who has perfoemed this surgery many many times as this is your brain I went to Jackson memorial hospital in Mimami this is 5 hours from my home good luck Joanne Joanne Gaudio shaw <rose_AT_pcfl,net> Palm Coast, Fl - Thursday, June 5, 2003 at 10:31:03 I am a 22 year old male, Recently I was diagnosed with a Pituitary Adenoma (3.5 cm x 3.5 cm Golf ball). I had been feeling terrible for years and got to the stage where I thought I was a hypercondriact. The doctor would always put my symptoms down to sinus or flu. I started to get uncontrollable headaches and eventually my vision just kept getting worse and worse. I got me eyes tested and was told to do exercises. I have now had my tumour removed because the dostinex was killing the tumour and it increased in size due to the bleeding (4.5cm). The operation was the best thing to do for me because I have had little pain and I can see again. I was in hospital for 5 days but felt like I could have walked out after the operation. It is like having a new lease of life now 8 days after my Operation. I have got my energy and feel like my brain is a sponge that can just absorb as much infomation as possible. I will say that for me the operation was the best thing I could ever have done. Regards. P.S. Don't take the doctors word as gospell. Ben Mitchell <mmitchell_AT_smartchat_DoT_net_DoT_au> Adelaide, SA - Wednesday, June 4, 2003 at 23:22:45 LOST MY PITUITARY GLAND BACK IN 1995 BECAUSE OF A TUMOR AND HAD IT REMOVED IN JANUARY 1996. YES I HAVE MY HIGHS AND MY LOWS. BUT I AM 70 NOW AND I AM STILL A LOT STRONGER THAN A LOT OF PEOPLE MY AGE. I TAKE MY PILLS AND GAVE UP ON THE SHOTS FOR THE GEL. IT DOESN'T WORK AS WELL BUT IS MORE EVEN OVER THE MONTHS AND I DON'T HAVE TO WORRY ANY MORE ABOUT THE NURSES WISE REMARKS WHEN I WENT IN FOR A SHOT. I HOPING FOR ANOTHER 20 YEARS OR SO. dR. SHEA AT LOYOLA WAS THE BEST. FRAN <FRANANDBERNIE_AT_MSN_DoT_COM> PLAINFIELD, IL - Wednesday, June 4, 2003 at 21:21:19 Love this Site!! I never had anyone other then my husband and God to understand what I've gone through. People have no idea because you look great but many times I feel lousy. I have to give thanks to God for keeping me. Oh yes, if you believe you or your child is suffering from a pituitary or any endocrine gland problem alway get checked! It could save your Life. Gina <Syllo_AT_attbi_DoT_com> - Wednesday, June 4, 2003 at 06:47:45 Tinkerbell yes infertility is a big part of pituitary disease. Make sure all possible is being done for you to handle your case. Wyatt...if you are feeling horrible on one treatment then you should discuss your options with your dr. We ultimately want to find a medication, they will give us the best hormonal control, but we must find the one too that doesn't affect our quality of life too much. Take care. t - Tuesday, June 3, 2003 at 07:35:25 I have a macroadoma pituitary tumor. Been going to M.D. Anderson for 8 months. Dostinex is giving severe headaches and side effects. Is anyone else going through what I am. please help Wyatt <aawyred_AT_aol_DoT_com> Ft. Worth, Tx - Tuesday, June 3, 2003 at 00:27:22 I WENT TO MY DR TODAY ALL MY TEST CAME BACK NORMAL. HE IS DOING A CT NEXT WEEK TO CHECK MY PIT TUMOR. I AM VERY CONFUSED AND JUST WANT SOME ANSWERS. SHOULD I ASK HIM TO DO A 24 HOUR URINE FREE CORTISOL TEST. Lisa R. <robinson1_AT_midsouth_DoT_rr_DoT_com> Middleton, TN - Tuesday, June 3, 2003 at 00:26:36 I was diagnosed w/ a micro adenoma in December,2002. I am currently taking Bromcriptine to lower my prolactin level. Which at last check was finally normal. My question is, my husband and I desperately want children, has anyone had infertilty caused by the adenoma ? and after treatment is it possible to concieve ? Please e-mail me, I am anxious to hear from other people w/this problem. Until now I thought I was alone. Cathy N. <cali_tinkerbell_AT_yahoo_DoT_com> Trento, MI - Monday, June 2, 2003 at 09:35:00 MY STARTED TO LACTATE WHEN I WAS THREE MONTHS PREGNANT,I HAVE NEVER TRIED TO *** FEED MY ***. I AM STILL LACTATING AND MY *** WILL BE 7 YRS.OLD IN DECEMBER 2003. WHEN I HAD A MRI DONE I FOUND OUT THAT THE TUMOR WAS 6MM. MY DOCTOR PRESCRIBED 2.5MG BROMOCRYPTINE. I AM ONLY 24 YRS.OLD AND I'M REALLY NERVOUS ABOUT WHAT IS GOING TO HAPPEN. THE PRESCRIPTION WAS SUPPOSED TO STOP THE LACTATING, BUT IT HASN'T AND I'VE BEEN ON IT FOR ABOUT A YEAR.I SUFFER FROMEVERY SYMPTOM FROM LACK OF LABIDO, TO SEVERE HEADACHES, TO ABDOMINAL WEIGHT GAIN, TO WHAT I CALL "THE GREAT DEPRESSION". IF YOU HAVE ANY INFORMATION THAT COULD HELP PLEASE EMAIL ME! THANK YOU CHRISTY <CJPHELANGOOD_AT_YAHOO_DoT_COM> BAYTOWN, RX - Monday, June 2, 2003 at 07:27:42 Hiya - Interesting reading all the questions, remarks etc. I hope that what I have to type will answer alot of your questions; When I was 18 (I'm now 34) I was diagnosed with a Tumor on the Pituritory Gland. I didn't have any periods then so thats when they discovered the tumor. I still hadn't had any periods till January this year (16 years later!!!). For the past nearly 2 years I had decided to take medication as my bones were slowly deteriorating because my body wasn't ovalating etc so I had to do something about it otherwise I'd end up with cripply bones by the age of 35-40. So I started on these Dostinex/Cabergoline tablets with only taking 1/2 one night a week. I am now taking 2 & 1/2 twice a week.......... Everytime I increase them they make me feel like **** but after a few weeks I'm back to normal (well......as normal as I can be). No worries drinking with them either by the way but don't drink the same night you take them - I learnt that the hard way! A few months ago I had my Bone Density scan and my bone mass has improved a great deal. I had another period last week (4 1/2 months after the first one) which I didn't cope with at all well as I had really bad cramps but what would I expect considering I hadn't had one for 16 years! The body must've got a fright as well! I've been told that its not safe to have kids whilst on this medication due to the effects of the tablets so now we have to look at contreception!! Argh. I have to take these till I get menopause then probably go on hormone tablets. So, don't despair if they tell you to take these, they are definately for a good reason especially in later life to help your bones. The only side effect I have been noticing lately is getting real down and its definately not my life (got the best man, best life and best job) but I know that it is one of the side effects soI have been given some anti-depression pills which I haven't started taking yet!! Hang in there and feel free to email me any questions I might not have covered. Take care All the best Muzzy Muzzy <marlintagger_AT_hotmail_DoT_com> - Sunday, June 1, 2003 at 21:24:17 Anybody knows what is TT test for cortisol, how it is done. I am quite reluctant to do this test as I fell unconscious and glucagon had to be injected when I did CPFT test before. Ina Hasan <iiinahasan_AT_hotmail_DoT_com> KL, KL - Saturday, May 31, 2003 at 12:55:44 HI labSci2 i HAVE EPISODES AS WELL THEY ARE VERY EXHAUSTING AND SIMILAR SYMPTOMS SEE ENTRY BELOW FOR MORE DETAILS ON ME.i HOPE THIS HELPS. Helen Kempsell <Helen_kempsell_AT_hotmail_DoT_co_DoT_uk> ENGLAND, - Friday, May 30, 2003 at 13:35:09 Hi Amymarie 1224 re your post on 22 may. I have all of these symptoms. What a nightmare. I have a possible prolactinoma, I have been started on medication(Cabergoline) today.I have had regular blood tests to test levels of prolactin and glycogen (sugar level) and an MRI.Anything to stop the emotions.I hope it will change everything and make life bearable again.Get yourself some tests and medication asap. Helen Kempsell <helen_kempsell_AT_hotmail_DoT_co_DoT_uk> England U.K., - Friday, May 30, 2003 at 13:12:47 I was dianosed with a macroadonoma pituitary tumor in 2002 I am now being treated for prolactinoma with the medication Cabergoline and now I have developed headaches and I have had my prolactin level tested and it has reduce,since taking the medication.Has anyone experience symptoms that the tumor is not shrinking? and if so what was your symptoms? I thank you for any information,concerning the medication treatment for this condition. Priscilla <priscilla68_AT_hotmail_DoT_com> Waldorf, Md - Thursday, May 29, 2003 at 17:12:04 Dec. 2000 dignosed with acromegaly, had surgery to remove tumor. Now my growth hormone is on the rise again Linda Roberts <lindar83_AT_attbi_DoT_com> McKinney, Tx - Thursday, May 29, 2003 at 12:53:00 nice page Spiele <Spiele> - Wednesday, May 28, 2003 at 16:01:42 I have a carotid body tumor (1 in 30,000 occurrence = rare) show up last few years, extra-adrenal non-cancerous. To keep things brief, I take warfarin, and have a busted Perthes hip (from a brutal floor hockey double hip check)for the last 26 of my 42 years. Three things :1) Low oxygen high carbon monoxide (2nd hand smoke in 12 step programs, workplaces, shared accommodation, office air system shutdown on week-end work the past ten years), or change of blood pH (veggies/fruit=more alkaline) seem to be general stated causes, and enlargement of the carotid body "oxygen/ arterial blood pressure sensor" triggers either deeper or shallower breathing. More recently, the coQ10 seems worth a try since it enhances every cell's mitochondria respiration ability. One site reported coQ10 was the only thing to eradicate parasite cysts burried in the deepest parts of the body like the bone marrow, and parasites like cancer, like a low oxygen environment so I have to oxygenate my body without burning it (longer walks versus sprints for eg.); perhaps the extra antioxidants I have been taking the past 10 years. Apparently high vitamin k food are hazardous for inducing bloodclots, as is long bus/car/plane rides - because any virations above 3 cycles per second can shake the blood back and forth in the finest capillaries so that it can not flow forward, and blood starved tissue necrosis. A monitored INR is suggested with annual check-up for over 30. see warfarininfo. Tiny blood clots here and there in parts of important organs over the decades can hamper thier function. Carotid body tumor remission. Has any one lived it. lesley sushel <grooming_AT_aprettypuppy_DoT_com> calgary, ab - Tuesday, May 27, 2003 at 16:43:20 leslie..not sure what you are asking, but Cushings is caused by too much cortisol either from an adrenal tumor or a pituitary tumor. Too much HGH human growth horomone causes acromegaly. Yes, there is a lot of hype about it. t - Tuesday, May 27, 2003 at 16:03:31 Is all the HGH spam clogging the e-mails a red flag to go cautiously on the new fad? I crossed this site and see cushing's is an overactive pituitary with hgh levels of 400 getting knocked down to 40 with treatment. Fill me in. Is this a teeter totter where too little or too much is problemo. lesley sushel <grooming_AT_aprettypuppy_DoT_com> calgary, ab - Tuesday, May 27, 2003 at 15:59:25 We just found out last night at the emergency room that the results of a MRAI our 17 year old *** seems to have a mass around her pitutary gland and to be honest we hyave no idea what they are talking about. Gould someone explain to us what this means? Thanks, Bill Webster <bigdr1_AT_lycos_DoT_com> Hamlet, NC - Tuesday, May 27, 2003 at 11:52:04 I am told as a result of an MRI that I have an 8mm pituitary adenoma, or microadenoma, 10 years ago an MRI I had because of severe and constant headaches showed a 3mm one. But at that time, after seeing several Docs they said that it wasn't a PA. I never would have had a repeat MRI except that I still have chronic headaches and they ordered another MRI. My PCP says it is nothing, and probably not related to my headaches. He referred me to an enocrinologyst, and I cant see him for a month. He wont even order bloodwork untill I see him. Am I to be worried about this tumor or just the pain and frustration of months of diognostics?!!! And my docs feel that my headaches are TMJ related, (I definatly have TMJ issues), but in 10 years noone has been able to help my headaches!!! And they certainly wont improve with a bunch of tests & apointments with specialists. Plus My PCP says this tumor is nothing. So why am I so confused, worried and in constant pain? Kelly Hohengarten <khohengarten_AT_aol_DoT_com> Simsbury, CT - Sunday, May 25, 2003 at 23:33:57 I had my first hormone gone ie the ADH at the age of 27 which is now I need to replace it DDAVP (desmopressin). Now I am losing other hormons or rather low level of those hormons ie the cortisol, sex hormone and thyroid hormone. I hv been experiencing thirst all day long with dry mouth, because of that I drink a lot until I'm short of breath due too much drinking. Now I'm experiencing muscles pain at the right hand that makes my hand movement painful, chronic constipation, not to mention the fatique, drowsiness, trembling. All these scenario occurs on and off. I am quite lucky as sometimes I managed to get my endocrinologist to advise me on the phone. I am trying my best to cope with this Hypopituitary, Hypocortisol, Hypothyroid and Diabetes Insipidus. Its not easy to live with this kind of condition but so far I managed. I do need support from friends to carry on living. Ina Hasan <iiinahasan_AT_hotmail_DoT_com> Kuala Lumpur, KL - Saturday, May 24, 2003 at 10:58:53 pitutary tumor operated in 1973. at present patient cannt see and hear anything. after 27 years recently diagnose tumor in the same place where orginal tumor was operated. patient age 79 years.please send me any suggession by post- my address is - mishra cb , b-95 vasant vihar bilaspur (c.g.) india. mishra p.p. bilaspur, cg - Friday, May 23, 2003 at 04:27:59 hi. i was diagnosed with a prolacatin tumor 12 years ago and received radiation treatment and have reduced the prolactin level to the ***. my problem is i recently turned age65 and i no longer have a prescription plan. i take 7 parlodel per day and they cost $318.00 per month. i can not afford this. has any one found anywhere to obtain the medication at a lower or reduced cost? ron rudick <ron219_AT_attbi_DoT_com> pompano beach, fl - Friday, May 23, 2003 at 01:21:42 I'm a cushings survivor, and I've found great help at www.cushings-help_DOT_com, which is full of information, a lively message board, and even has a real-time chat. Local group meetings are also listed for those who would like to meet another person with cushings. Lynne <lynnemc_AT_attbi_DoT_com> Everett, MA - Thursday, May 22, 2003 at 21:22:31 Just got my MRI results from last week and my doctor says my MRI is "inconclusive"- he does not see a tumor around the pituitary gland but does see some kinda of cluster of something but he is not sure what it is. He is sending me on to another doctor!! My symptoms are: no periods(for 2 years now), my left *** is swollen and hurts, I'm overly tired all the time, and overly emotionally, frequent headaches, and elevated prolactin level per lab results. Is anyone else going through the same thing-- please email if you have! Thanks! Amy <amymarie1224_AT_hotmail_DoT_com> WI - Thursday, May 22, 2003 at 16:26:33 PJ - Drs have tested all those hormones and more! Have had comprehensive metabolic panel, LH, SH, ACTH, IGF-I, TSH, Free T4, Prolactin, Testosterone, Free Testosterone, DHEA-S, CBC, Cortisol, Vit. D, Calcium, Protein levels,etc. Everything is normal! Is it possible to have symptoms of Cushings but nothing show up on tests?!!! Please help! Amy Steinkamp <adsteinkamp_AT_yahoo_DoT_com> Columbus, OH - Wednesday, May 21, 2003 at 18:32:57 I am a 28 yr. old female. About 10 yrs. ago when at a annual doctors visit he noticed a lump in my throat. He asked me if I was having problems swallowing or if it was sore. At that time I was clueless and was having no problems. I would say in the last 3 yrs. I have been getting sore throats semi-frequently for weeks at a time and my voice is becomes very raspy. Last year at a normal doctors visit for a sore throat he thought it would be in my best interst to have my thyroid checked. They did the typical Iodine pill testing. My levels were somewhat high so he referred me to a specialist. After visiting the specailist he seemed very vag and not to concerned. They did a blood test and seemed to think it was nothing to be concerned with. However you can visible see the enlargement in my neck. I almost hate to make a doctors appt. because I feel I am jumping to conclusions and feel I will be wasting their time. Also I am not quite sure as to what syptoms to look for. I thought maybe someone who has had this problem can tell me what they experienced. I go through mood swings quite frequently where I do not want to be around anyone at all for a week, sore throats for days, my voice becomes scratchy & hoarse, I go through spells where I am exahausted, I don't seem to be interested in things that I enjoy anymore, and my menstrual cycle is never normal. I'm not sure if these are symptoms or not but I was wondering what type of symptoms others have experienced. I would like to see a different specialst now because I am getting sore throats again and have not been my normal self for some time now. Thanks. Gidget <gidget_miller_AT_hotmail_DoT_com> New Phile, OH - Wednesday, May 21, 2003 at 10:26:30 Amy make sure they are testing all pituitary hormones. Don't just rely on the drs stating all are fine. Know exactly which hormones are being tested and what range they fall in. IGF-1,DHEA,cortisol, PROLACTIN,ACTH, FSH,LH Have your feet or hands grown at all? PJ - Tuesday, May 20, 2003 at 20:47:15 I had pit adenoma removed 1 1/2 years ago. Suffered from Cushings. Never really got better; some improvement but not as much as I've read about on various sites. Now have severe bone pain, headaches, fatigue, weight gain, etc. Basically, the same symptoms as before. Just not as bad - YET. Drs are perplexed because all hormonal tests come back "normal." However, MRI shows small spot on pit. Either scar tissue or another adenoma. Drs leaning toward diagnosis of fibromyalgia. However, I was symptomatic with Cushings for 6 1/2 years and tested "normal." Any one have similar problems? Know of any doctor, medical facility, or research I should seek? PLEASE HELP!!! Amy Steinkamp <adsteinkamp_AT_yahoo_DoT_com> Columbus, OH - Tuesday, May 20, 2003 at 20:06:55 I had a pit. adenoma removed 1 1/2 years ago. Never fully recovered as I should have. Am now REALLY tired all the time, severe bone pain, headaches, gaining wt., etc. Basically all the symptoms as before - just not as bad. YET. First time it took the drs 6 1/2 years to diagnose Cushings. Now lab work is "normal," but small spot on MRI. Could be scar tissue or another adenoma. Drs are perplexed; might be leaning towards diagnosis of fibromyalgia. I feel like it's another tumor. Any one else have similar experience? Know of clinic, dr, or articles I should seek? PLEASE HELP!!! Amy Steinkamp <adsteinkamp_AT_yahoo_DoT_com> Columbus, OH - Tuesday, May 20, 2003 at 20:01:34 I am 26 years old I go out alot.I am taking Bromocriptine and I was wondering If anyone kwons If I can drink alchol when I go out with my friends. Dora Vasquez <pulguita3000_AT_yahoo_DoT_com> Inglewood, ca - Monday, May 19, 2003 at 23:35:51 My husband 32yrs old was diagnosed with a pituitary macroadenoma almost 5 x 3cm. Since 2 x surgery & radiation treatment we are now opting for a 3rd. I would be most interested in any information you have to offer in aid to help us all achieve the best results for his condition. Thank you. Chelsea Clancy <chelseaclancy_AT_hotmail_DoT_com> Brisbane, Q - Monday, May 19, 2003 at 05:08:29 I just wanted to ask if anybody tried the Halleluja Diet. I know that Lisa tried it, but I wanted to find out if anybody else has tried and the results that came about. Krystle <Kissy166_AT_juno_DoT_com> Elk Grove, CA - Saturday, May 17, 2003 at 19:46:23 Thank you for the site. It has answered a lot of questions I had on Cushings. Keep up the good work. Jacob Fulwiler - Friday, May 16, 2003 at 23:30:43 Hi everyone! I have a question, and wasn't sure where to post. Long story short...I was doing some raking/yardwork over at my moms 2 1/2 weeks ago. Of course I was a little sore the next two days, BUT...that's not the reason I'm writing. My "question" or "concern", if you will, is that during the time I was raking I noticed that I was having difficulty swallowing...like when a little piece of food gets hung up and you just can't get it down. I could breathe fine, but I had this "lump" in my throat that slowly came on while raking and then after I rested it started to go away. OK..it could just be a fluke, but I haven't had that type of sensation before and I DIDN'T have anything stuck in my throat. From time to time I get a milder version of the "lump" in my throat feeling, but nothing like this. I've been told that my throid feels a little big from time to time, and it's tough for me to swallow, especially when the DR's make you swallow to check your thyroid. That's the first part. The second part is regarding my back. YES...my back felt sore after raking for a day or two, but I just thought it was from the raking. I STILL have the back pain, 2 1/2 weeks later. It doesn't feel like a pulled muscle and I still have complete range of motion. The pain is more like a burning sensation slightly above the "flank" area of the back, along side the spine. The left side hurts much worse than the right, although the right side feels the same way..."sore" and "burning". I've done the hot baths/showers, the aspirin/Tylenol/Advil meds, the stretching out, the massaging, etc. It DOES NOT take 2 1/2 weeks (and counting!!) for a "pulled muscle" to heal. PLUS...again...it doesn't feel like a muscle strain or pull, or even a knot. I never felt anything "pop" or "pinch up" when I was doing the yardwork. It feels like something is "pushing" from the inside out, and heat and counter pressure sort of helps with the discomfort. No urinary probs, no fever, no other complaints with THIS problem (although I still have the "inside" headaches, the dizzy spells, and the occasional arm and head twitches which I'm still working on figuring out what those are from). I DO have ovarian cysts AGAIN, on both sides, which they found in April (both about 1 inch in diameter). I'm just wondering if the cysts are causing the back pain (which I've had ovarian cysts off/on for the past 10 years, and ever BIGGER ones at that, and NEVER had probs like this)or if with the possibility of a pituitary tumor, that something might be going on with the adrenal glands, since the pain is about an inch or 2 away from the spine and just behind the lower part of the ribs. PLEASE....ANY thoughts or ideas regarding this would be helpful!!!! Kathy (LabSci2) Kathy <LabSci2_AT_aol_DoT_com> Oak Creek, Wis - Friday, May 16, 2003 at 17:58:53 Hi! I have had a pituitary tumor for four years now since I was fourteen. I want to help anyone who has any questions. I know a lot about this, so please Please please email me and ask away!!!!!! Krystle Tullos <Kissy166_AT_juno_DoT_com> Elk Grove, CA - Thursday, May 15, 2003 at 15:31:50 Hi, I am 29 years old and am so glad I found this site!!! I have been feeling all alone dealing with everything happening. I am waiting for my MRI results as I type. (Had it done on Monday) My doctor thinks I have a prolatin producing pituitary tumor. My emotions are on a roller-coaster! Thank you to everyone for posting, it's great to know I am not alone- The best to everyone and God Bless! Amy <amymarie1224_AT_hotmail_DoT_com> Mukwonago, WI - Thursday, May 15, 2003 at 15:27:18 Hi, I am 26 and was diagnosed with a macro pituitary adenoma (prolactinoma). My first MRI in 1995 measured 1.6 cm and I took Parlodel which made me sick. My prolactin levels were above 2000. They switched me to Bromocriptine, which did not work for me, and then about 3 years ago I started taking Dostinex. The Dostinex has worked the best but still have mood swings and I'm still lactating. I have two kids and took the meds while pregnant and both kids are wonderful. I just went for an MRI yesterday, I'm anxious to get the results back since I haven't been feeling well lately. I will check back and let you know. This site is great.......nice to hear other peoples experiences. Take Care! Jessica <dumaisje_AT_cmhc_DoT_org> Lewiston, ME - Thursday, May 15, 2003 at 15:01:20 I AM 29 YEARS OLD AND WAS DX WITH HYPERPROLACTIMA IN 1997. I WAS PRESCRIBED SOME MEDS BUT THEY DIDN'T HELP MUCH. HADN'T BEEN TO DOC SINCE. NOW I AM 250 LBS.,VERY TIRED, NO PERIOD, JOINTS AND MUSCULES ACHE(ESPECIALLY MY BACK), NO LIBDO,INFERTILE(NOT BIRTH CONTROL USED OF ANY KIND SINCE 1994), BRUISE VERY EASILY, COVERED IN STRECTH MARKS AND BROKEN VEINS, AND HAIR GROWING ON MY STOMACH. NEED SOME ADVICE. PLEASE HELP. Lisa R. <robinso1_AT_midsouth_DoT_rr_DoT_com> middleton, tn - Thursday, May 15, 2003 at 13:30:46 Viva Laponia!-This is my second time posting-Kathy Kathy <example myname_AT_myISP_DoT_com> - Tuesday, May 13, 2003 at 05:26:45 To make a long story short, 17 years ago when I got pregnant with my first son I went blind in my left eye. I was diagnosed with a pituatary tumor. It was removed right after I gave birth to my son. No radiation was performed on me because I still wanted more children. I then got pregnant again with my twins (with 5 years of doctoring) and after their birth the tumor had grown back. This time I underwent surgery and radiation. I am now on hydrocortone, synthroid, prempro, and a blood pressure pill. I have put on about 55 lbs. within the 17 years. My doctors says it is not because of the pills. I disagree. Has anyone out there been on replacement hydrocortone and gained alot of weight? I also wonder what the long-term side effects are from taking this drug for life. If you know anything about this please e-mail me. Thank You Joanne <www_DoT_anthony13bowl_AT_aol_DoT_com> pittsburgh, pa - Monday, May 12, 2003 at 22:28:03 Hello eveyone. I just got home from the doctor and I have been missing my periods since December so the doctor ordered me to have a catscan and he took some blood, he thinks I my have a problem with my pituitary gland or even a tumor. I would love any information anyone has, please someone contact me if they've experienced the same thing, I'm 19 and very terrified and I have no one to talk to thanks!!! :) Mandy Schmitzerle <mandy_schmitzerle_AT_yahoo_DoT_com> Caneyville, Ky - Monday, May 12, 2003 at 21:28:46 Kathy, have you heard of polycystic ovary syndrome, might not be but when you said that you have presented with fibroids around the ovaries that might be worth looking at? kate <glitterfly_k8_AT_hotmail_DoT_com> - Monday, May 12, 2003 at 06:16:17 Hi!!! This is my first time posting. I've posted on AOL Health to try and find some answers, but nothing at this point. I'm a 31 year old female...Medical Technologist and a Registered Nurse. You'd think with my back ground I'd be further ahead at figuring this all out, but I'm not!! In October 2001, I blacked out/passed out at work (an RN in the ER). I didn't think too much of it (running around all day, been awhile since I ate anything, a bit dehydrated, etc.)...BUT when I came to, I had this bad headache and felt very dizzy (like a drunk buzz feeling). These symptoms continued for a few days so I decided to get checked out. The GP that saw me said it sounded like an "atypical migraine". He put me on Zomig and ordered some blood work and an MRI. Everything was "normal" on the blood work and MRI, but after getting the IV contrast I noticed my headache seemed to flare up and I had problems with my speech (slowed down, skipped words...like I was drunk). The symptoms continued (the headache, the dizzy sensation, the speech prob). I was admitted into the ER and the afterwards, the hospital a week later when I could barely walk (due to the dizziness) and could barely open my eyes because of the excrusiating headache and sensitivity to light. I was diagnosed with "slight dehydration" (since I wasn't eating much at all and had extreme fatigue since this started)...along with the "atypical migraine". To try and condense things from October 2001 up to now....I've been to a headache specialty facility, psyches, teaching facility, Mayo Clinic....you name it. The symptoms have gotten worse....the headache is ALWAYS there...it ranges froma 2-3 on a "good day" up to an 8 or 9 on a "bad day". The headache has "moved" from being in the front half of my head to concentrating "inside" my head...behind the forehead and eyes. I get "episodes" a few times a month...lasting from a few hours up to 4 or 5 days...where my speech will go (which has now turned into just babble and jibberish), the right side of my body becomes very weak...almost to the point of paralysis, the left side of my body tenses up and starts to twitch. I've had CT scans in March 2002, May 2002, and June 2002...all of which show a "questionable" area around the pituitary. The follow up MRI's are "normal". EEG's are "normal", so seizures have been ruled out. I noticed *** discharge (milk-white substance) from both breasts in October 2002, which is continuing even now. It's only about 1/2 teaspoon, but is strange since I'm NOT on hormones/birth control, I've NEVER been pregnant, and I'm NOT pregnant now. The only "hormones" that have been tested on me were the prolactin (10.4, in May 2002 and just recently in April, 28.4) and TSH (1.86, in May 2002, and 1.96, now). Everything is continuing....ALL the symptoms (constant headache, once or twice a day dizzy spells, off/on weakness, off/on speech probs, off/on twitching, constant *** discharge, mood swings regardless of my menstrual cycle (per my family), decreased libido, always feel cold, occasional unequal pupil sizes)....I also have a history of uterine fibroids and ovarians cysts, of which the April ultrasound showed NO fibroid, but a 1.6 cm cyst on the R ovary and a 2.6 cm cyst on the L ovary. I appologize for rambling on and on and making this post so long....but I was hoping that by making it more detailed that maybe someone will be able to help me out...supply me some direction or answers, or even some similarity in symptoms, since I currently have NO diagnosis (unless you count the "atypical migraines or conversion disorder, which some DR's think I'm actually making all of this up!!). Feel free to e-mail me back. Thank you for your patience and better health to all!! Kathy <LabSci2_AT_aol_DoT_com> Oak Creek, Wis - Monday, May 12, 2003 at 01:05:41 Jo,Thanks for the interpretation. It did help. My husband is forwarding it to his dad. My father-in-law did have cancer in 1998 and a nephrectomy in 1999 and has been okay since that time. He is a VERY heavy man and a long-time heavy smoker. Sad to say but the Dr. in Iowa where he lives said that since he only had about one year to live then it's okay that he continues to smoke. My husband and his brother have urged both of their parents to stop but with no luck. He is having lots of problems with his legs and thought it may be gout but he does have the red face....I am going to check up on Cushing's Disease. Thank you for your help. Debbie <Debmelanie_AT_attibi_DoT_com> Jacksonville, FL - Sunday, May 11, 2003 at 22:28:43 HI Deb, Let me start off by stating I am not a doctor and this should be discussed with your father in laws doctor. Encourage him to ask a lot of questions so he doesn't feel left in the dark. This is my simplied reading. The impression is stating that it needs to be decided through further testing whether or not this is a first (primary) site of cancer or cancer spreading (metastatic) it also could be, but not likely a functioning adrenal mass. Your adrenal glands rest on top of your kidneys. Some adrenal masses can produce too much of a hormone and a patient will develop cushings disease. Does he have symptoms of Cushings disease..which is excess cortisol? Red round face, thin arms and legs, skin bruises easily, dark purple stretch marks etc. I hope this helps. Let me know if I can help further. jo - Sunday, May 11, 2003 at 17:54:35 Jo,I am the *** in law of the patient and he emailed us the copy of the MRI and this was listed as the recommendation. All my father in law said is that his Kidney Doctor (He had his right kidney removed with cancer in 1999 with no reocurrances...)wants to do a biopsy. So I am not sure what the "Impression" Means....any ideas?Debbie Debbie <Debmelanie_AT_attbi_DoT_com> Jacksonville, FL - Sunday, May 11, 2003 at 09:26:52 hiya i have a prolactinoma and my prolactin levels were at over 3000 i was prescribed cabergoline 1/2 tablet once a week, my prolactin levels did drop to less than 300 now they are creeping back up to 1000. got my next appointment at manchester (england) mri in 3 weeks. anybody with any questions please please please email i would be happy to hear from you. email address katiem_8783_AT_hotmail_DOT_com katie morrisroe <katiem_8783_AT_hotmal_DoT_com> england manchester, - Sunday, May 11, 2003 at 06:04:54 hiya i have a prolactinoma and my prolactin levels were at over 3000 i was prescribed cabergoline 1/2 tablet once a week, my prolactin levels did drop to less than 300 now they are creeping back up to 1000. got my next appointment at manchester (england) mri in 3 weeks. anybody with any questions please please please email i would be happy to hear from you. email address katiem_8783_AT_hotmail_DOT_com katie morrisroe <katiem_8783_AT_hotmal_DoT_com> england mnachester, - Sunday, May 11, 2003 at 06:04:17 Hi! I am writing out of desperation. I have been ill for 4 years now. I was just DX with Chushings. I was always under weight and in the last month 2 people (complete strangers) have asked me when my baby was due. I have multi SX but I am extremely depressed over the continious weight gain. All I keep reading about is people who have weight gain even after surgery. They have taken me off of my hormone therapy for now and I put myself back on because of the emotional aspect and what I think of doing off of it. Can someone please give me some feedback on the weight issue??? My main problem is low hormones and high Cortisol (extremely high Cortisol. This would be greatly appreciated. Thank you and God bless Tina pcitina_AT_aol_DOT_com Tina <pcitina_AT_aol_DoT_com> Scottsdale, AZ - Sunday, May 11, 2003 at 05:28:19 Does anyone have any information on a problem where one has ' a cyst appearing lesion in the pituitary or a small necrotic micro-adenoma' ? ron <teryfree_AT_hotmail_DoT_com> Winnipeg, mb - Friday, May 9, 2003 at 22:02:55 I'm 35yr female with apparently high prolactin levels (1600) and all my hair's falling out. However a CT showed no adenoma but they now want to do a mri. Has anyone had prolactinomas that don't show on ct and has anyone else had hair loss - perhaps I;m barking up the wrong tree but the prolactin levels are confusing? kate <glitterfly_k8_AT_hotmail_DoT_com_DoT_au> - Friday, May 9, 2003 at 05:22:55 What did you dr tell you it meant? What have they told you about a diagnosis so far? Jo - Friday, May 9, 2003 at 02:36:29 what is the definition of:Impression: Enhancing left adrenal lobulated mass measuring approximately 5 X 4 CM in size and differential diagnosis should include primary versus metastatic neoplastic process and less likely functioning adenoma. What does that mean? Thanks for any answers I receive! debbie <Debmelanie_AT_attbi_DoT_com> Jacksonville, FL - Thursday, May 8, 2003 at 22:36:13 I would like to hear from anyone who has had a Yytrium Implant for a Prolactoma Tumor. Selina <selinasuleyman_AT_hotmail_DoT_com> Toronto, ON - Wednesday, May 7, 2003 at 22:02:53 I had Graves Disease, went through the radation to kill the thyroid, and now am highly hypothyroidic - with TSH levels of 116.4 (normal - .49-4.67). My prolactin level is in the 30's - not bad, but not good either. MRI scheduled for the 13th - will have to wait to see what they say. Does anyone out there have high TSH levels combined with the high prolactin levels to help explain what happened with them? Looking for the tumor thing. Heard that to remove it - thye have to go through the eye - is this true? That isn't appealing whatsoever. 29, female and ready for any info anyone can throw at me. thanks Jessica Frazer <jfrazer_AT_curtis1000_DoT_com> Hartford, CT - Tuesday, May 6, 2003 at 12:51:56 iam having my mri on the 13th of may , they think i may have a tumor i would like someone to respond who has been through this before , to hear of your experiance contact pumper5_AT_hotmail_DOT_com marc polk <pumper5_AT_hotmail_DoT_com> grand rapids, mi - Monday, May 5, 2003 at 20:43:39 Hi all, I'm 29 years old and have been diagnosed as having a prolactinoma since I wa 22years old, came to know about it due to absence of periods for 18months. Headaches etc. Done the bromocriptine thing didn't agree with me felt sick all the time and have since changed to dostinex which I take weekly. I have two girls a 3 yr old and a 1 year old. Don't know how hard it was to conceive as first one not planned but told by physician few months before conceiving her that couldn't conceive as prolactin levels too high. After completing last exam of degree hey presto there she was! However all's not so rosy, mood swing irratability, can't settle, looking at life and everything in it to change and mess with it. Currently looking at separating from partner as don't know what I want anymore, loss of sexual appetite with husband! tired, sleeping difficulty, lethargic! need I go on so I looking for anyone who may have experienced any of the above or none but wants to confirm that it may or may not have anything to do with prolactinoma joanne davies <lee_DoT_davies17_AT_btopenworld_DoT_com> - Monday, May 5, 2003 at 16:45:18 I had pit tumor removed 1 1/2 years ago. Diagnose w/ Cushing's. I began to feel somewhat better but still suffering from some of the symptoms. MRI shows spot - could be another pit tumor or scar tissue. Drs now looking at diagnosis of fibromyalgia because of severe bone pain & tiredness. Any thoughts? I really think it's another tumor. Would appreciate any advise. Amy Steinkamp <adsteinkamp_AT_yahoo_DOT_com> Columbus, Oh - Sunday, May 4, 2003 at 22:42:22 To Whom it may concern, I have been diagnosed with a pituitary tumor, it is causing me to lactate, have severe headaches, nausea, dizzyness, and I cant see very well. When I get a bad headache I cant see out of my right eye at all. I have no appetite, can anyone recommed a diet program that may help me. I have been to the U of U to an endocrinolgist, and he says I should just leave it alone and do nothing. This does not sound right to me because it seems to be getting worse. I am tired all the time and cant go about my daily routine. Does anyone have any suggestions on how I might be able to make myself feel better since this Doctor wont help me. Please write back soon, I am desperate and any help would be greatly appreciated. I am a 41 year old female living in Utah. My E-mail address is ashworth_AT_etv_DOT_.net Thank You, Kim Wardle Kim Wardle <ashworth_AT_etv_DOT_.net> Castle Dale, Ut - Saturday, May 3, 2003 at 00:22:47 Does anyone know where in the USA there is a center or MD who specializes in Pineal TUmors? Bonnie <BLSRD_AT_cox_DOT_.net> N. Kingstown, RI - Friday, May 2, 2003 at 13:12:45 5 years ago I was diagnosed with a rare autoimmune disease that effected my pitituary gland, thyroid gland and adrenals. I am a registered Radiological Technologist and practiced in the field for 25yrs. I was 48 years old when my health began to fail and so I investigated with my primary physician what was going on. When he tested my testosterone production he determined that I should be on some type of replacement therapy. I was given an appointment with an endocronologists. This is where I found out that a rare autoimmune disease was present and attacking the pitituary gland. My understanding that there are two reasons that a pitituary gland slows down or stops producing hormones. One being a tumor and the other being radiation exposure. Since I don't have a tumor I assume the latter is true, and since I have worked in the radiology field for 25 years. (often in unprotected areas such as cesium inplants) Radiation Protection methods were quite different during the early 70's then what they are today. Is this a correct assumption on my part? I am just curious as to why at the age of 48 yrs everything seems to go down hill. I am on hormone replacement and I am doing fine. Thank you Terry F. O'Neal <tfoneal1_AT_aol_DOT_com> Augusta, me - Thursday, May 1, 2003 at 10:45:20 support for my loving girlfriend who suffers from a pituitary tumor. I love you E. my Sunshine. kevin cunnington <wolfinaz_AT_excite_DOT_com> flagstaff, az - Tuesday, April 29, 2003 at 23:21:34 Does anyone have a prolactin level aroun 50 and feel tired? I had a pit tumour and had surgery 5 years ago. Prolactin is 58 and I feel Tired please any comments would be bennificial Crystal <crharrison_AT_gov.mb.ca> Dauphin, MB - Thursday, February 6, 2003 at 12:26:38 looking for Specialist in Dallas Area If you are happy with a doctor specializing in Pituitary tumors please forward his or her name kitty powell <kitty_AT_reprocon_DOT_com> dallas, tx - Wednesday, February 5, 2003 at 15:18:33 I am the mom of a almost 7 year old with a pituatary abnoma. The doc. won't do anything about it because it isn't causing enough "problems". But, he is as I said almost 7 and 165 lbs. Because of the placement of the tumor the pituatary stalk is cocked to one side and he never has the feeling of beeing full. I don't know what to do. We have gone to Mayo Clinic in Rochester, MN, and are now at the IA City clinic. No help so far. We have been dealing with this for 4 years now. Does any one have any situation like this? Please help us. Mom Mom - Monday, February 3, 2003 at 15:12:02 i have had three neuro surg in a 6mth period. two to debulk my pit tumor and one to repair csf leak that caused meningitis. i still have residual tumor on my pit stalk, which i just completed 25 treatments of radiation. my tumor is still secreating acth. anyone with similar situation or advice please e-mail. victoria brock <vickybrock_AT_attbi_DOT_com> downers grove, il - Sunday, February 2, 2003 at 02:34:08 Hello, I ercently had an MRI done to see if there was an abnormality with my pituatary gland. This was done after a cat scan was done to due my daughter and I hitting heads and my headache was not going away. This was a very scarry ordeal, not the MRI itself, but the Hell I have put myself through waiting for thios to happen and not knowing the doctors might be lookng for. My results will be coming out in the next couple of days. This has helped just writing this down and sharing it with others who have gone through this. Thanks for reading this, Steve steve kirchmann <kirchkids1_AT_cox_DOT_.net> - Saturday, February 1, 2003 at 11:38:00 Hello,I am 22, shock, (I just found out Dec. 6, 2002), scare, and worry. I have a diagnosis of a pituitary tumor/prolactin secreting tumor that includes galactorrhea. The problem is that I have very often headaches, on test my prolactin shows "normal" and according to my neuro-surgeon the only answer is surgery within six months. I don't want this to be my only choice since I know that medicine or radiation could be a choice. Has any one been through this already that could give me advice. Please let me know if it's normal to be in shock after 2 months. Thanks Sandra Jimenez <s_jimenez22_AT_yahoo_DOT_com> Sacramento, CA - Friday, January 31, 2003 at 05:22:28 I was just diagnosed with a tumor on my putitary gland. My prolactin level is at 4000 from what I understand and now I have growth hormone defeciency. I have been unable to work for months and am considering going for S.S. disability does anyone have any experience in dealing with the Social Security Disability for this condition. Please let me know. Lucky <imp_AT_up_DOT_.net> MI - Thursday, January 30, 2003 at 12:55:20 My best friend has recently been diagnosed with a craniopharyngioma. His physicians are suggesting surgeryI will be caring for him at my home post operatively. What can I expect? Is there anything that I can or need to do to prepare for his arrival? jessie barton <jessiebowbart_AT_aol_DOT_com> st. francisville, la - Saturday, January 25, 2003 at 23:29:15 I WAS DIAGNOSED W/ A PIT ADENOMA REVEALED AFTER AN MRI BACK IN 1999...I HAD BEEN HAVING MANY MANY PROBLEMS W/ MY MENSTRUAL CYCLE FOR YEARS AND NO ONE KNEW WHY...I WAS GETTING BAD HEADACHES AND WAS ALWAYS IN A BAD MOOD...I WAS EXTREMELTY DEPRESSED AND SOMETIMES WENT 3 OR 4 MONTHS WITHOUT MENSTRUATING...I WAS PUT ON PARLODEL AND HAD REALLY BAD SIDE EFFECTS AND DID NOT TAKE THEM LIKE I SHOULD HAVE...SOMEHOW A YEAR LATER I GAVE BIRTH TO MY NOW 2 YEAR OLD SON....I BREASTFED MAGNIFICENTLY W/ HIM FOR 1 1/2 YEARS..SINCE THE BIRTH I WAS FEELING LOTS BETTER AND DID NOT CONTINUE MY PARLODEL...AFTER I DISCONTINUED BREASTFEEDING I BEGAN HAVING THE SAME SYMPTONS AS BEFORE AND AFTER 2 YEAR OF NOT TAKING ANY MEDICATION I WENT BACK TO MY ENDOCRONOLOGIST AND SENT ME FOR AN MRI....HE HAD EXP THAT THERE IS A POSSIBILITY THAT THE ADENOMA MAY BE GONE BUT HE WANTED TO BE ON THE SAFE SIDE....THE ADENOMA WAS STILL THERE BUT THE GOOD NEWS WAS THAT IT HAD NOT GOTTEN LARGER...HE THEN PRESCRIBED DOSTINEX...I HAVE BEEN TAKING IT ON AND OFF SINCE THEN..MY HUSBAND AND I ARE TRYING TO HAVE ANOTHER CHILD BUT HAVE YET TO SUCCEED...I BEGAN READING SOME TESTIMONIES OF SOME OF THE PEOPLE ON THIS FORUM AND HAVE BEGUN TAKING DOSTINEX AGAIN...I THANK EVERYONE FOR TAKING THE TIME TO WRITE THEIR STORY DOWN SO THAT OTHERS CAN READ AND LEARN FROM THEM millie <mcavarra_AT_hotmail_DOT_com> Franklin Square, NY - Friday, January 24, 2003 at 22:39:38 I haven't posted in a while. I have a tumor on the pituitary stalk, midline, pituitary stalk thickening too. If you have this presentation, and want to exchange experiences, feel free to e-mail me. Do know that the conservative approach is best, and that surgery for these tumors can have a not-too-desireable outcome. This is a rare disorder, a zebra in the world of rare disorders. In my case, I have all of my hormones. Many Blessings - Kristy Kristy Jones <kjones72_AT_houston.rr_DOT_com> Houston, TX - Thursday, January 23, 2003 at 14:08:33 Hello, Can anyone recommend a specialist in the Ottawa, Ontario, Canada area who diagnoses/treats pituitary tumours? Thanks. A. MacLeod <jprado_AT_compmore_DOT_.net> - Friday, January 17, 2003 at 15:00:15 hello, I have a glioma on my hypothalamus. This was discovered by an MRI 12 years ago. Recently, during an eye exam I was told by my opthamalogist that one of my pupils was 2 cm. smaller than the other one. It is on the same side my tumor is located. I have noticed a slight change in my eye only recently. Is this something I should be concerned about? Can a hypothalamic glioma affect the pupil size? Other than that I am not experiencing any abnormal vision problems. The opthamologist recommended that I see a DR. and have an MRI done. julie forrest <anahadata_AT_hotmail_DOT_com> Lower Lake, CA - Friday, January 17, 2003 at 02:15:05 I have alot of headaches and nausa, and my Doctors say it all in my head, parden the pun. I have a 1.2 cm Pituitary Adenoma which hemorrhaged. I am not been getting any help by the doctors. Steve Andrews <tecsupp_AT_shaw.ca> Sherwood Park, AB - Tuesday, January 14, 2003 at 14:44:32 For 9 nine I have a micro adenoma on my pituatary gland. I've had MRI's and check my prolactin levels on a regular basis. Has anyone experienced any difficultied getting pregnant and continuing to take the parlodel after pregnancy. I was told not to have my tumor removed (3mm) by my endochronlogist b/c the tumor is not big enough. I am nervous to get pregnant with this tumor. Please write if you have had a similiar experience. Hope <hopeee_AT_hotmail_DOT_com> Boston, MA - Monday, January 13, 2003 at 16:48:33 would like to talk to someone about igf levels and amount of parlodel they are taking and side effects any one have tingling in face and mouth thanks paula pauladuell <pduell2001_AT_yahoo_DOT_com> shiloh, ga - Monday, January 13, 2003 at 07:58:36 Yes! Pamela, yes Tonya MD - Friday, January 10, 2003 at 21:28:30 is there a chance of having a successful pregnancy after having an ectopic pregnanacy pamela martin indianapolis, in. - Friday, January 10, 2003 at 11:37:01 Great place to read regarding Pituritory Tumors. I have been on Cabergoline now for 1 1/2 years and my Prolactin level has come down considerably. I started on 1/2 tablet once a week and gradually increased the tablet, now taking 2 tablets twice a week. When you first take them or increase them, the side affects is usally feeling sick or tiredness just depending on the individual but by no means be scared when you get told you have a Pituritory Tumour. The word `Tumour' frightens us but its usually a little size of a pea then they keep an eye on it to make sure it dosen't keep growing. If your eyes start going funny or you get bad headaches then you may need to look at increasing your medication or definately let your specialist know. My prolactin level was up to 15900 a year and a half ago, last June it was down to 1400 so its come down in little time. I haven't had a period since 16 years ago (when I was 18) so I had to come back into this site today to share that I got a period yesterday - good news to know my `plumbing' has finally worked due to me persevaring and taking these cabergoline-dostinex tablets. It'll be interesting what my prolactin level from my blood test, this week, will be. I hope that once my body starts doing the `period' thing every month then I can gradually go off the medication. Please don't be scared the ones who have written in here that have just found out re your Tumours. If you need any more info, email me to the below email address. Regards Muzzy P.S obviously the `Foreigners' who write heaps of gibberish in here can't read that this site is for people with Pituritory Tumors - not about Kings, Arabs etc - they need help by the sounds - perhaps they thought this was a physcoritory room?? Muzzy <marlintagger_AT_hotmail_DOT_com> - Friday, January 10, 2003 at 01:15:00 Hiya, I live in England UK, I gave birth to a lovely little girl last April, I visited my doctor six months later after still loosing breast milk, a prolactin level blood test revealed that the level was high, a second blood test was arranged, that showed the level had fallen a bit but not as much as the doctor would have liked it to. Now I am schedueled to go and see a specialist for further tests, I don't know if I am jumping to conclusions! Just wanted to get some advice off people who have been through the same thing. As I am quite scared as what the outcome will be. Kelly Spencer <kel19882_AT_hotmail_DOT_com> ENGLAND, - Wednesday, January 8, 2003 at 17:34:00 In March of 2002, when I was 19 I had surgery to remove a tumor on my pituitary gland. I continue to have emotional as well as physical problems. If there is anyone who is going thru the same ordeal, please contact me. Nikki <foxriderbytch76_AT_budweiser_DOT_com> Tulare, CA - Wednesday, January 8, 2003 at 12:28:13 Anyone taking HGH replacements? How has it been taking them? More energy? Less energy? Weight loss? Mood changes? Side effects? Thanks. Please PLEASE e-mail me. Bryan <Bkean10_AT_aol_DOT_com> Seattle, - Monday, January 6, 2003 at 19:14:30 I have had 2 transnasal surgeries for Pit Tumor. It may be growing back again now...and affecting my vision. Can I have a 3rd surgery...and should I try the Endoscopic Type? Please help--I DONT WANT to use Radiation yet !!! michele <sbarbra0265_AT_aol_DOT_com> san diego, ca - Sunday, January 5, 2003 at 13:50:55 Hi all i have a craniopharygomia ,in operable ,i had surgery at the university of miami but they didnt remove it it`s 3cm by 3 cm .i then had sterotactic radiation 30 treatments .my pituitary gland is dead so i`am on everything but the kitchen sink :) i get Mri`s every year after 2 years it hasnt grown much at all .just hope it stays that way .. but i dont feel good i`am always sick and some what dizzy most of the time . but hangin in thier good luck everyone Anthony Gardini <agardini_AT_cfl.rr_DOT_com> Deltona , Fl - Friday, January 3, 2003 at 20:37:33 my mom had a pituatary tumor removed about 4 years ago. She is now suffering from very dry eyes. Can anyone who is experiencing the same side effects and is getting relief for it get back to me. She is suffering for a year now and cant find any relief. THANKS!!!!! regina <ilovesambuca_AT_msn_DOT_com> staten island , ny - Thursday, January 2, 2003 at 21:12:13 Hi all! Just checking in again..probably been a couple of years since I posted. I was diagnosed 8 years ago with a prolactinoma. Did parlodel but my tumor was WAY WAY big -- golf ball sized. Completely grew around both carotid arteries. So I did the surgery thing. They got most of the tumor but the portion growing within my cavernous sinus was just too hard to go after without risking vision. Did a follow-up of radiation -- not sure I'd advise taking that course but I believe it helped some too. Today -- I take a pile of pills daily, thyroid, prednisone, testosterone, DDAVP, and still take parlodel in order to push my prolactin levels down. I get along mostly ok -- though I think my mood is impacted sometimes by the combination of meds. Anyone else have this problem? I was taking enough parlodel that I ended up with depression and tried Zoloft for a while. I will NEVER do that again. Serious couch potato lifestyle for me on that med. Instead, I work to manage my moods myself and that seems to be working out just fine. Questions? Feel free to e-mail me. Otherwise, rock on -- there are far worse diseases and tumors to get stuck with. Bryan <BKean10_AT_aol_DOT_com> WA - Thursday, January 2, 2003 at 15:40:25
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