I would suggest that your husband find another center for treatment. He may have another type of tumor and needs more testing and may need surgery instead of relying on just meds.
Also a diet too low will just put a body in starvation and you won't lose, so it won't work after a while. Find a pituitary center.
HI - have just come across this conversation after searching for Prolactinoma, weight gain in males. My husband was diagnosed with a giant prolactinoma 5 years ago. Size of a tennis ball, his level was calculated at 242,000 when they finally could get it to the point they could do the reading. On Dostinex, his levels quickly returned to normal ranges, is on Simvistatin, Thyroxine & testosterone injections 12 weekly - all symptoms everyone has mentioned here seem to be in check other than his ability to lose weight. Like the other guys mentioned in here he is over 6 ft, fit as anything and has to train 5 days a week just to maintain his current weight of about 125kg, he wants to get to 110. He has tried all sorts of restrictive diets, now on a hideous one involving a shake for breakfast and dinner which is a real shame as we eat plenty of fresh veges/salads, lean meats, don't drink (he never has a beer), no cakes etc. Yet he lost 15kg on these shakes (down from 130kg) and the moment he couldn't train hard out as he was travelling for work and ate "normally" for 2 weeks he has put on 9kg. its heartbreaking but we can't seem to get any answers, he eats the same as me and i'm 60kg. Just wondering if anyone has had any breakthroughs since last writing?
My free T4 was in the low normal range and my endo started me on synthroid and I immediately dropped 17 lbs. My hands and feet went back to regular size and the constipation and carpal tunnel I had are gone as are the muscle aches that I attributed to being in my 50's. I have a feeling that most people with prolactinomas have enough anterior pituitary dysfunction to cause secondary hypothyroidism. Keep checking the labs. One reading is only a snapshot.
My suggestion to you is to tell your doctor to take you off of Dostinex and instead prescribe Bromocriptine. Since I was taken off Dostinex and instead started taking bromocriptine I not only lost the 30 lbs gained while on Dostinex but the severe headaches that I endured everyday for 7 years as a side effect of the Dostinex subsided as well. Good luck!
One thing that comes to mind is growth hormone. I've also gained weight but can lose it VERY slowly if I count calories, for me I lose at 1200 kcal same day...only one beer a day for me, ouch. But I could not lose at all before the growth hormone injections.
To test for this you have to get a very special stimulation test. Where they inject you with a reagent and measure your levels every 30 min over a few hours.
A lab test called IGF-1, if loo wish can be an indicator of this too. Also I really watch how much hydrocortisone I take, under my neuro endo's guidance and take the lowest amount that I can.
Ciao from Italy
Are you under the care of a neuro-endo, or a regular endo?
If you are not under the care of a pituitary center, find one. If you are, find another.
Get copies of everything.
Yea well I'm not a soldier but an active guy who has been struggling with this for 15 years. Same meds except my thyroid doesn't work. I take a big dose of synthroid in addition to the other stuff. Libedo is marginal always struggling here to. I'm 6 foot and 240. I eat about 1500 calories a day, I do exercise, and work like a plow mule. Somedays it's hard for me to complete the day I'm so drained, sometimes I do ok. I'm 59 and I would put most to shame and yet can't loose a #^%*+ pound! I am pretty much on a clean protein, low carb diet. Even looking at most carbs causes weight. I'm beyond frustration. Isn't there nobody out their smart enough to figure this out! I think aromatization could be part of the problem, I've tried some natural stuff (maca root etc) it doesn't work because I don't have the natural production of tester one etc. anybody got any thoughts?
I have been on the dostinex for 18 months, i had been on it before twice and got pregnant within 6 weeks the first time i took so it works really well at reducing the levels. I never mentioned the weight because i have only seen them once since i have been on it they leave a year between appointments. I mentioned it to my GP and it was him who said that even if i managed to stay the same weight that would be a challenge enough. I have tried exercise and eating healthly and it helps me stay the same weight but to lose weight i would need to eat very little and i'm not prepared to do that. I hope your husband has better luck than me with it, one good thing the dostinex works and if he is feeling better its not all bad, i know the weight gain is stressful though.
The Prolactin range for the lab is 3-17.
They did a ton of tests on all of his hormones. His thyroid is normal. The only hormones that were off were the Prolactin and Testosterone. He was also low is Vitamin D, so he is now taking that as well.
inneedofhelp82, sorry to hear that you still have not lost any of the weight that you have put on. I see first hand every day the frustrations that go along with that. How long have you been on Dostinex? Have you talked to your doctor specifically about the weight and how to lose it?
Are they just testing his prolactin, or are they testing other hormones? It could be other hormones are still off - like thyroid. If they are just testing TSH - that is useless. Once you have a pituitary lesion, TSH is invalid.
I too take dostinex for high prolactin levels, my highest levels were 2800, my levels are now 35 but i haven't lost any of the weight that i put on, i was told it would be very hard to loose weight and if i could stop putting on weight that in itself would be a bonus. I have put on another stone in the year my levels have been normal. I wish your husband all the best with this but for me it has been almost impossible to loose weight.
whats the range for prolactin for that lab?
More blood work tests are in today. Prolactin is now down to 85 and his Testosterone level is 589, which is really great.
I'm starting to think that this weight thing won't budge until his Prolactin is in the range it should be. We will just have to be patient and see what comes with time!