Prolactinoma Support Group

Ive been haing wierd hairloss for last year or so patchy and not like male pattern i was hoping that with treatment maybe the loss would regrow but there are a lot of articles of hairloss using dopamine antagonists ?

whats everyones thought/experiences of it if any ?

Yes, you will feel orgasmic...for a while...and then???

Very possibly; you'll see what I am talking about. Hopefully it all goes absolutely well for you...I don't want anything but good for you.

Just be on your guard.

thanks TP so far so good, i took my first pill 0.5mg 10/05/09 1:07pm , im on one a week at the moment until i see my endo.

So far i havent felt anything different, infact i was worrying that maybe it passed through me :S i had some dinner before i took it then needed the bathroom not long after taking it.

Is it normal to be feeling no different or will it build as i take my next tablet ?

Keep going...

I have been diagnosed and under treatment for eleven years, symptomatic for at least 14 years before that. To answer your questions about whether your conditions can be attributed to the prolactinoma:

Weakness: Very much so. The drug should help. but don't let the doctor wait to long to begin testosterone therapy if your levels are low. In my experience, that was much more of a help. If you haven't had test results or a discussion of thyroid supplements, insist on them. Both lead to low energy and weight gain. I was 282 lbs. prediagnosis. I am at 225 now (at 6'3"). Not great, but a major improvement.

Hair loss: Don't know. I haven't noticed any more or less than my ancestory would lead me to expect.

Weight gain: Very much so. See the above. Low testosterone and thyroid levels lead to lethargy which leads to obesity.

Gynoecomastia: Absolutely. One of the primary symptoms of a prolactinoma in males.

Bier spots: Don't know. First I have ever heard of them.

Cabergoline side effects: I don't know. I have been taking bromocriptine for more than a decade without any.

Walking speed and getting up stairs: With the meds and concurrent hormonal supplements you should be much better at these.

Sexuality: Meds should help, but if you have trouble getting or maintaining an erection, don't be bashful about asking for Viagra or one of its rivals. It is warranted with the diagnosis.

General advice: 1) Buy a copy of "Man Made: a Memoir of My Body" by Ken Baker. He was a promising young hockey player whose career was ended by a prolactinoma. He wrote this bestseller about the experience. He is now a very successful professional writer and minor league hockey player. The ISBN Number is 1-5842-083-2. I just checked Amazon. Copies are available there used for less than 10 cents, if you pay the standard $3.99 shipping fee. It came out just as I was diagnosed and was a big help in knowing there were others like me and what to expect of the course of treatment. There aren't a lot of males with prolactinomas. I met Ken on a book tour. He said I was the first other patient with one he had met even after visiting several cities on the tour.

2) Be a pain in the ass to your GP and insist on a referral to an endocrinologist with experience with prolactinomas in males. Don't make the mistake of thinking that your doctors have to like you. I was nice and misdiagnosed for fourteen years. There is an astounding amount of ignorance in the medical profession about the condition. If you happen to be in California, Dr. Lawrence Katz-Nelson at Stanford Hospital is one of the leading authorities in the field.

3) Get your vision checked. 1.5 cm. is big. Large prolactinomas can crush the optic nerve that is nearby the thyroid gland, inducing vision loss or blindness. Mine is 2.0 cm. and vision has not been a problem, but I have met another patient who was blinded by one before being diagnosed and treated.

Good luck. This should eventually change your life for the better.

I would second what rolken has to say. I was diagnosed two years ago with a 50+mm prolactinoma with levels over 8000. I had no symptoms then and still don't except for fatigue/weakness. I feel very blessed to have avoided vision problems, or worse. I am suffering hair loss, but it has been from the radiation treatment I took for it. I have lost weight, but am not sure it was due to the prolactinoma. It can be difficult to separate side effects of medications from side effects of the tumor. Definitely, if at all possible, get an endocrinologist. This is just too complicated of a thing for just a GP. God bless.

I took my second pill on sunday night before bed and today ive been feelign a bit sick, heavy head, bit dizzy, feel like being sick, every little noise annoys me and tired/weak.

is this normal ? and will this get worse with every pill i take ?

thanks

Yep, keep going...