Yes, I was 12 or more years yet I know someone over 30 years. Docs tend to ignore this stuff.
hi i am just scanning the net for info i poss have a pit tumor i am hypothyroid have been for 18 years just been discovered i have prolactin of 5000 plus very high.had no periods for 2 years i am so concerned i see an endo in a couple of weeks but had many probs for years moods swings, dizzy, headaches lowor no sex drive bad vision in one eye bad peripheral vision in one eye hopfully it will all be sorted soon any one else had probs for long time before diagnosis
I hope they do a thorough check when you go back! Gook luck with the new med!
good luck, keep us posted!
Hi There! Hope you are doing well.. I did go to see the dr. Monday and he prescribed dostinex for me to take .5mg 2x week. He thinks this will take care of it, but he is also concerned that my thyroid is at the hypothyroid level.. I have to go back in 6 weeks to have my bloodwork done... I want to Thank everybody who has answered any and all of my questions... I have learned a great deal from you guys.. Thank You All So Much... I don't think I could have made it this far with out all of you....
Rhonda
A neuro-endo is best, one that typical treats pituitary disorders. They are usually found at larger hospitals and universities. You need to get other hormones tested too as when one is off, others can get wacky too.
The major side effect Dostinex is it can cause is heart valve problems or other related issues. This is typically found with pre-exisisting conditions as well as parkinson's patients whom are treated with levels that are VERY high. My only side effects are headache, minor dizziness and nausea. I take 1 .50 mg pill 1 x weekly. I take mine on Saturday nights so I sleep through most of the side effects that are unpleasent. It is also dangerous for pregnancy and should be stopped immediately. My dr. told me about the known problems and that it was found with doses MUCH higher than would ever be needed for me. She also said she would feel more comfortable if I did an echocardiogram just to check for pre-existing conditions on my heart. The other option is bromo and it is daily and has more of the "common" side effects which I didn't think I could personally tolerate daily. I have been taking Cabergoline (Dostinex) since August 2008. I have noticed some new, minor heart palpatations to be honest and I am sure it is nothing, but I have another echocardiogram scheduled just to play it safe. :-)
I think you will be just fine seeing a reproductive endocrinologist at first. You can always play it by ear. The good news is the tumor is seen already, so this endo doesn't need to find out what is wrong with you. But he/she should monitor your blood work and test a lot of different things very regularly (like every 8-12 weeks). The pituitary effects reproductive system greatly, but it also effects many other areas. I would just learn as much as you can and be very proactive with your health. Call a few university hospitals to find an endo that specializes in pituitary disorders. :-)
I would possibly consult with a different neurologist than you previously saw. I don't think that neuro was a poor dr. simply because the tumor wasn't seen at that time... 5mm tumor is VERY small and a special style of MRI was done by your gyno to look at your pituitary. A brain scan that your neuro was doing would not have been targeted to your pituitary. I would simply see another for the other things seen just for a second opinion on the other things besides the tumor you have going on.
Feel free to message me at any time. I am still pretty new to this and sometimes a good support team is exactly what I am in the need of!
This medication Dostinex have you guys had any side effects from it? I have been researching it and it sounds like it could be some bad stuff... How long have you guys been taking it?
Hi there! Ladies Thank You So Much for your support....You don't know what it has meant to me.....Yes so far the OBGYN is the Dr. that found the tumor through bloodwork and then a MRi I had done a couple of weeks ago. I have an appointment Monday with a reproductive endocrinologist. My neurologist did not catch the tumor back in November when I had my last MRi done he just put me on topomax and then depakote for my chronic migrains which I could not take.. As of right now I have not been prescribed any medication to treat the tumor... Someone told me I did not need to see a repro endo I needed a neuro endo, and there again I did more research and turns out that is who I need to see, but there is no one in my area. I am guessing I will go to this appointment Monday to see what they say, and to see if they may could refer me to the neuro endo.
Thanks Again Ladies it really means a great deal to me!!!!
I too have a prolactin producing tumor. My prolactin levels were around 51 when I first was diagnosed, but I suspect they may have been much higher a few years prior before some meds I was on accidentally lowered them. I take Cabergoline (Dostinex) 1 x weekly. It is known to have some dangerous side effects when used to treat parkinsen's at higher dosage, but Dr's typically know this going in and have you either screened with an echocardiogram or at the very least get a detailed personal and family history. My insurance pays for it at a $30 copay (2nd tier) for 4 pills (1 per week) but without insurance it would be $100.
Are you only seeing your obgyn for this? I first went to a neurosurgeon and then was treated by an endo. Have they mentioned Dostinex? It worked so quickly and now that there is a generic, it isn't expensive at all. You take it 2x a week. I would start there. Good Luck!
Thank you for your response.It helps just to talk to someone who has had some of the same things going on.. I have not had nipple dishcharge, but my prolactin levels are very high. My periods have always been very heavy and I have tried to get them for the last 4 years to do a hysterectomy, and the OBGYN wants to keep doing athings like endometrial biopsies (had two of those in the last two years) Had an Ablation 3 years ago and when I woke up in recovery she proceded to tell me it did not work. Now that she has found this going on she also wants me to come back for a colposcopy because she thinks I have cervical cancer..Did I mention these test hurt like hell...So to be honest with you I really and truely I don't know what to do or which way to go.
Thanks
COUNTRYGIRL919
I was diagnosed with the prolatin producing adenoma about 12 years ago, but I think I may have had it for many years before as I always had a small breast discharge. I was put on dostinex and it worked really well for me. The generic is available now and it worked just as well. I now have central hypothyroidism so be on the lookout for other things down the road. Always have your eyes checked as well. Good luck, but don't worry. This is common.
Thank You for your input, it was greatly appreciated
Well, the call topamax "dopa-max" for a reason... it has that side effect for a lot of people. I take it... I tried depakote too... awful.
The second MRI may (or should) have been done differently in order to be correct. That is how it picked up the tumor.
Prolactinomas (I had one) are pretty common as far as pit tumors go. While they make you feel awful and mess with how you feel physically and mentally - they are not the most dangerous of tumors if that is what you have. I say that as I had elevated prolactin and I also had Cushing's. I had two tumors.
You need a neuro-endo, not a repro endo, in order to get thorough testing. More than one hormone may be off.
The white matter may be the migraines. I have no idea about the fluid - you need to see a neurologist who is better than the guy who is just toking you up on meds.