Microprolactinoma and Low Test - Age 24

Hello, just read the stickies and am hoping for some advice. Sorry in advance as I realize I am probably lacking needed information in terms of blood tests and such, and will update that as I can.

When I was about 20 years old it was discovered I have a microprolactinoma. My prolactin levels were around 150 at the time and just recently got within the normal range with my last bloodwork. My first endocrine doctor was apparently a retard and didn’t even get my prolactin within the normal range to control the tumor. I was also briefly put on some kind of testosterone injection before the prolactinoma was discovered for my low testosterone. I do not know the specifics and was probably around 18 at the time.

Unfortunately, I didn’t know any better and just assumed this guy knew what he was doing. Whenever I questioned anything my parents pretty much just reassured me that since hes a doctor obviously nothing can go wrong and unfortunately I trusted their judgement for way too long. At the time my testosterone levels were around 400, and as far as I know that’s the highest they’ve ever been tested at.

To my understanding my testosterone levels should be going back up, but have declined in the two most recent bloodworks I’ve had done over which time prolactin has continued to go down.

I guess my immediate questions are if this is normal. Is there some kind of latency period before my testosterone will rebound? Or if it was going to would it have already done so already?

If it’s not going to recover on its own, what are my options?

I plan to speak with my endocrine doctor again sometime this week and ask him these questions. Is there anything else I should ask?

Thanks in advance for all advice that is offered here, there is still a lot I need to educate myself on and I now realize I was passive and trusting for far too long.

-24 years old (microprolactinoma was discovered when I was around 20)
-6ft
-34in waist
-145lbs
-body and facial hair grows slowly, facial hair doesn’t get very long. Average amount of body hair.
-always been fairly thin
-microprolactinoma is the only health condition that I know of resulting in the low testosterone and high prolactin
-Currently on Bromocriptine 11.25mg/day, midodrine 2.5mg/day for low BP, desmopressin 0.2mg/day for low BP.
-My most recent labs (yes, this is all that was done, I don’t know why my endo hasn’t requested more than this)
prolactin : 13.3 (4.0 - 15.2)
testosterone : 294 (348-1197)
-diet currently consists of ~20oz chicken breast for dinner, scrambled eggs for breakfast, and ~.5 galons of milk a day with some other miscellaneous things thrown in. I’m eating slightly above my maintenance for calories.
-StrongLifts since August of 2012
-testes have been in pain once in the last 4 years, probably didn’t have a fever. (it was a long time ago, I cant remember) It came on suddenly and without reason as far as I could tell.
-morning wood/nocturnal erections are inconsistent. Sometimes I have them sometimes not. My libido in general is all over the place. Sometimes non-existent sometimes its ridiculous.

You are taking: Bromocriptine - Wikipedia

The other drug option is: Cabergoline - Wikipedia

Caber has a much longer half life. This means that the drug does not need to be dosed often.

Study this: Bromocriptine - Wikipedia
which point to this: Orthostatic hypotension - Wikipedia

Caber might deal with your low BP.

Bromo contains bromine and that can interfere with iodine function. Please provide more info as per thyroid basics sticky. Note that iodine replenishment can displace bromines in the body and they are then excreted. That temporarily increases serum bromine levels that can make you feel sick and make you stink. You need to tough it out, its not the iodine that makes you feel unwell when this happens.

Need the labs, and possibly old labs. Do need LH/FSH data.

Have you read the thyroid basics sticky? - report body temperatures and iodine intake history.


Results

Stable normoprolactinemia was achieved in 186 of the 223 women treated with cabergoline (83 percent) and 138 of the 236 women treated with bromocriptine (59 percent, P<0.001). Seventy-two percent of the women treated with cabergoline and 52 percent of those treated with bromocriptine had ovulatory cycles or became pregnant during treatment (P<0.001). Amenorrhea persisted in 7 percent of the cabergoline-treated women and 16 percent of the bromocriptine-treated women. Adverse effects were recorded in 68 percent of the women taking cabergoline and 78 percent of those taking bromocriptine (P = 0.03); 3 percent discontinued taking cabergoline, and 12 percent stopped taking bromocriptine (P<0.001) because of drug intolerance. Gastrointestinal symptoms were significantly less frequent, less severe, and shorter-lived in the women treated with cabergoline.

Cabergoline versus bromocriptine in the treatment of hyperprolactinemia: a systematic review of randomized controlled trials and meta-analysis - PubMed

!!! http://pituitary.mgh.harvard.edu/E-S-962.HTM

I read the thyroid basics sticky, I had a full thyroid panel done ages ago and unfortunately I don’t remember where the results are to post them but I was told that everything was fine. I’ll try to find it though.

I’ve also been on caber briefly ; my current endo actually had the same reasoning for trying it. But I had side effects even at very low doses and was switched back.

I’m looking for old labs to post too and I’ll ask about having LH/FSH labs done in the future.

I cook daily and my salt intake is probably excessive if anything, I’m not using sea salt.

I’ll take my temperature tomorrow morning as well.

Thanks for the reply, I’ll try to get needed labs as soon as possible.

Waking temperature was 97.8

edit ; 98.2 at 2pm

edit ; 98.6 at 3pm

edit ; 98.4 at 4pm

edit ; took my temperature again this morning and got 97.6

this time 98.0 at 2pm

98.4 at 3pm

98.3 at 4pm

What’s your timeline for this, hungry? There won’t be a “rebound” until the tumor isn’t blocking the signal (assuming that it is/was). If your TT is around 300 WITHOUT TRT, then it must not be blocking very much. You’re lucky they found it at micro instead of macro like most men. When I finally found mine my prolactin was at 336 and my TT around 100. Life was rough.

I never tried bromo due to all the negative side-effects I read about. Cabergoline actually LOWERED my BP pretty significantly.

I’m not sure what you’re asking by timeline. The most recent bloodwork was about a month ago, and that was the first time my prolactin had been within the normal range. As far as I know this is the lowest my testosterone has ever been though.

My previous understanding was that as prolactin went down, there would be an immediate upward trend in my testosterone levels.

Prolactin levels don’t dictate testosterone levels. As the tumor shrinks, assuming the treatment IS working, it should inhibit the pituitary less; meaning THEN you would be producing more testosterone.

You said it was found 4 years ago but you only recently got your prolactin in check? Were you taking cabergoline the entire time? What were your side-effects that made you switch to bromocriptine?

How many MRIs have you had, and what were the tumor sizes?

Contact your doc and get ALL your labs you have had done since this began and post them here.

I only took caber briefly after switching to a new endo about one and a half years ago. Tried it out and my blood pressure dropped even further. I stuck with my first endocrine doctor for about the first two and a half years because of my complete ignorance that the guy didn’t know what he was doing or just didn’t care.

I’ve had several MRIs over the last 4 years, two since switching endos which confirm that the tumor is shrinking.

I also just found a lot of the medical paperwork I was looking for, so hopefully all of that is in there. I’ll post it after I’ve had a chance to look through it.

Thanks for the replies and explanations provided so far. The help is greatly appreciated.

If they found the tumor and did nothing to treat it for 2.5 years then that guy absolutely had no idea what he was doing. Were you on bromocriptine in the beginning, then tried cabergoline, then switched back to bromo?

Cabergoline dropped my BP quite a bit. I was a little high, so it didn’t have much effect on me.

You would fall into the secondary hypogonadism category, which means your testes work but they aren’t receiving the signal from the pituitary gland due to the inhibition of the prolactinoma.

If you’re not too bad off, I would just stay the course with the bromocriptine. When the tumor has shrunk (takes a long time. years maybe), things should return to normal. TRT is tough road to go down. If it’s not absolutely necessary, it’s best to avoid it. That’s just my opinion.

If you were to start TRT, a restart of your HPTA would be possible in the future because you are secondary hypo. Just letting you know.

Good luck to you. If you have any more questions feel free to ask.

Yes, the original endo put me on bromo. However he didn’t manage to get my prolactin levels within the normal range. He put me on 5mg and just left it there all the while assuring me that everything was fine. Unfortunately I am young and stupid so I trusted him for far longer than I should have.

I also intend to use TRT as a last resort only if necessary.

Thanks again, you’ve cleared up many of my immediate concerns.

Try taking high dose iodine for a while to kick bromines out of your body. As that happens, you may stink like fish, fart foul and feel unwell. If that happens, you know that you had a lot of bromines on-board. Stay the course and you may feel better after that. If there are no bromine like effects, then you know that you are not getting loaded up from the bromo.

[quote]KSman wrote:
Try taking high dose iodine for a while to kick bromines out of your body. As that happens, you may stink like fish, fart foul and feel unwell. If that happens, you know that you had a lot of bromines on-board. Stay the course and you may feel better after that. If there are no bromine like effects, then you know that you are not getting loaded up from the bromo.[/quote]

Stupid question, will taking iodine require me to go up on bromocriptine? It sounds like iodine will mitigate what the bromocriptine is doing, am I misunderstanding?

Thanks again for the replies.

You may have bromine in your tissues from the breakdown products of the bromo. There will be no connection between dose requirements and bromine removal. The effects of bromine in your tissues has nothing to do with the bromocriptine drug. There are other drugs that have bromine as part of the molecule. Most of those have been removed from the market place.

However, if you are bromine contaminated, your body could work better when bromines are removed and that could have secondary effects as some tissues function better.

[quote]KSman wrote:
You may have bromine in your tissues from the breakdown products of the bromo. There will be no connection between dose requirements and bromine removal. The effects of bromine in your tissues has nothing to do with the bromocriptine drug. There are other drugs that have bromine as part of the molecule. Most of those have been removed from the market place.

However, if you are bromine contaminated, your body could work better when bromines are removed and that could have secondary effects as some tissues function better.

[/quote]

I see, thanks.