Low Test caused by a Prolactinoma

wellbutrin might be complementary to the Dostinex for reducing prolactin. It should also help with nor-epinephrin, which might help balance out all the dopamine from the dostinex.

[quote]PureChance wrote:

yeah, why would she be worried. she’s not the one who has to suffer through the hormone swings, the high estrogen, the stressed out adrenals, etc. etc. etc.

look, this is your life, your body, your one and only shot at this. push for a treatment plan that you agree with. your doctor is an advisor a partner - she doesn’t know everything and is definitely not GOD. If you don’t like what she is suggesting and you can’t work with her, then go find a doctor that you can truly partner with.

you also have high TSH. you may want to test RT3 and get the 4x daily saliva test.

did you ever test D25-OH, B12, or ferritin/total iron capacity?[/quote]

That’s weird because my TSH level has actually doubled since last March:

Mar 2011 - 2.3 mIU/L
Jan 2012 - 4.0 mIU/L

Free T4 was unchaged in the same time period at 1.3 ng/dL (ref range of 0.75 - 1.95). I haven’t had a recent T3 test. March 2011 was 285 pg/dL (ref range of 175 - 370).

I did have a ferritin test in June, 2011. 175 ng/mL (ref range of 30 - 400).
Iron was 100 ug/dL (ref range of 67 - 173). TIBC was 300 ug/dL (ref range of 225 - 430).

Free T4 alone is worthless.
Total T3 alone is worthless.
TSH alone gives you a 100,000ft view of the situation.

you need TSH + the ratios between FT4, FT3, and RT3 to really know what is happening.

TSH of 4 is a serious concern and you need more tests to confirm what is happening.

[quote]PureChance wrote:
Free T4 alone is worthless.
Total T3 alone is worthless.
TSH alone gives you a 100,000ft view of the situation.

you need TSH + the ratios between FT4, FT3, and RT3 to really know what is happening.

TSH of 4 is a serious concern and you need more tests to confirm what is happening.[/quote]

Thanks very much - I will request a full thyroid panel when I meet with my Endo this week.

I also want to have another set of hormone tests done. Just in the past two weeks, I’ve noticed a big increase in chest hair growth - and in areas I’ve never had it grow before. I’m also getting tired about 11pm, when before, I would be exhausted all the time, but never tired (another symptom of low T).

Alright - another update.

Met with the Endo this week. The tumor has shrunk from 2.5cm x 2.5cm to about 1.7cm x 1.7cm. Progress. However, the MRI report noted that because of the tumor, I’ve likely suffered permanent pituitary damage.

I asked for another set of lab work to see why I’ve been seeing some signs of improved T-levels.

Alright - time to fess up. In early February (right after my last blood test) I got ahold of some Nolvadex and took it for about two weeks, but stopped to not taint any future blood tests.

I think there’s no doubt it did something… But I’m not going to be surprised if the effects don’t last. Why would my system respond to it temporarily?

Would it be worth going on a Clomid restart for a full month? Endo was open to hCG treatment - but she wanted time to research it. She’s never used it long term before.

Just use the Nolva you already have. 20mg/day for at least a month seems to be a pretty popular restart. If that works, your pituitary should be fine. At least for now.

Alright - update time.

I got my blood test results back from Feb 29. My testosterone is up to 403 - so roughly double the 220 I had before. Still not great for a guy my age of 28 - but it’s an improvement.

Given I started taking the Nolva at around Feb 1 and took it for around 2 weeks then stopped, that means I had from between Feb 14 and Feb 29 to get it out of my system so I didn’t screw up my test results. I read Nolva has a half life of 5 - 7 days, so it should have been 75%+ gone by the time the test came around.

I talked with my Endo - and she basically wants to do nothing. I’m cured as far as she’s concerned - my testosterone isn’t low enough now to warrant long term treatment. She also couldn’t find any clinical studies on the long term effects of hCG therapy, so she won’t prescripe that to me even if I need it in the future.

I’m worried as hell that taking the Nolva messed up my results and once I stop taking it, my testosterone level will crash again. I read one study that used Nolva in prolactinoma patients. Their testosterone levels improved, but only while they were on the Nolva. Once it was gone, they came back down to where they were before.

Please help - I’m really torn what to do at this point.

Does your endo specialize in pituitary issues or is she a regular endo? Like a lot of people on here, even with a pituitary tumor, I found the endos I dealt with lacking in knowledge of hypogonadism and how to treat it. I see a reproductive endocrinologist with a specialty in pituitary issues and andrology. You might want to try that route. I was glad to see your tumor shrunk and hope it continues to do so. Did you tell your endo that you tried some Nolva? If not then tell her. That way she knows there is a chance that the blood tests were skewed and can order some additional tests after you’ve been off for longer than a couple weeks.

what did your follow up thyroid tests results show?

Endo wouldn’t order follow-up thyroid tests. She said my results weren’t out of range and I couldn’t convince her otherwise. She said the increase in thyroid hormones was likely due to my pituitary recovering somewhat from the prolactinoma. I’ve definitely felt my energy levels increase a bit.

Given I noticed what happened when I had an increase in testosterone levels from the Nolvadex, I think I’m back down to sub-normal. I can now appreciate how bad my situation is. I’m royally depressed and can’t think or talk straight. This needs to get fixed pronto.

I’m seeing another doctor next week. He is supposedly a hormone replacement specialist. I have Plan C lined up for the week after if that doesn’t work out. Plan B & C are both private doctors, so I’d have to pay to see them. My preferred option is to fess up to my Endo and try and convince her to treat me the way I want after I’ve had a second opinion. I’m not betting that’s going to work.

I’m not happy with my Endo’s opinion of “If it’s not life threatening, it doesn’t need to be treated”.

even the endo society say that TSH > 2.5 is a concern and combined with symptoms warrants further testing. your doctor is basically not up to speed on thyroid issues. please check out 18 Summaries of Things We Have Learned - Stop The Thyroid Madness and read through the links on the left.

Update time again:

I went to a new Doctor yesterday - the hormone replacement specialist. He’s much more of a holistic, whole-body, mind and spirit blah blah blah… I made it clear I only wanted the testosterone level treated. He was very concerned with my low testosterone levels and also noticed the mild hypothyroid right away. He definitely knows his stuff.

He ordered a whole new batch of tests - including blood, saliva and urine tests to check all kinds of hormones and their metabolites. I think it was too much, but I’ll play along for a bit.

He also ordered an hCG stimulation test (500IU 3x per week for two weeks) to see if I can bump up my testosterone level with that. I’ll get that done over the next few weeks and see what happens.

I told him about the Nolva I took and he wasn’t too impressed, but sort of understood my frustration with my Endo after she told me “your Test level isn’t THAT bad…” I need her to treat the prolactinoma, since it’s her area of expertise, but in terms of treating my testosterone levels… she’s fired.

I’ll get copies of all the new test results when they come in and post here.

Another update:

The hCG stimulation test worked like a charm!!!

Testosterone before = 245
Testosterone after = 942

I can’t stay on large doses of hCG long term. The doc prescribed injectable Testosterone for 8 weeks at 75mg / week. He’s going to alternate between Test and hCG to see how that works. My estradiol level is high after the hCG (79.8 now vs 23.7 before). The doc is having me take DIM supplements to try and bring that down, but if it doesn’t work he’s going to prescribe Arimidex.

He didn’t follow up on the Thyroid issue, but I’ve noticed an improvement. I have much higher tolerance to cold than before. I used to be terrible for being cold and shivering, but now I’m the one outside without a jacket when everyone else is bundling up.

I managed to keep myself in decent shape with the low testosterone - I just measured in at 195 lbs w/ 20% bodyfat. That should improve dramatically, since I’m going to hit the weights hard over the next few months.

All I can say is that this is astounding. If I had to pick one word to describe how I feel: Confident. I’m not taking the antidepressant anymore (makes me feel jumpy now), and I have a girlfriend for the first time in many years.

Good news with the HCG stim test but your doctors decision to now start you on exogenous testosterone doesn’t make a bit of sense to me. Why not knock the dosage down to about 250 iu 3x/week (which is the dosage level that has been shown to cause testoerone levels equivalent to natural production) instead of the bit higher dose?

Your balls are obvioulsy capable of producing testosterone–let them do so!

When you say “alternating” between test and hcg, what does that protocol look like? Are you really going to take test for a few weeks, then hcg for a few, and repeat? That doesn’t make a lick of sense.

Also, I doubt DIM is going to bring down your E2 as much as you need it to.

I agree with VT that seeing how you functioned on HCG, it does not make sense to introduce exogenous testosterone. 1500 IU is not that high of a dose and as VT said, you have the opportunity to drop it. I have been talking to a guy whos been on monotherapy for years and functioning very well on it. In fact, he prefers it instead of TRT (which heve tried). As far as I know, it is Dr Shippen`s preferred protocol if guys can make it work.

I don`t want to interfer with your current protocol or plans, but I would seriously consider treatment with clomiphene at some point seeing that you considered it earlier and that you responded positively on HCG. A lot of guys fail by using too high doses. 25 mg per day is a good starting point, certainly not more. A lot of guys need to go even lower. 12,5 mg per day or even EOD.

I`ve done a lot of research on this and while it does seem to not work for a lot of guys, the fact remains that quite a few guys actually do quite well on it and there are several studies to support it including side-by-side studies with regular exogenous testosterone replacement. For me, it boosted testosterone considerably, but unfortunately it also boosted SHBG such that free testosterone did not improve by much.

There are quite a few success stories though.

Good luck!

Thanks for the good advice. We’ll see what happens in 8 weeks when I go for my next blood tets after the testosterone. I agree that I should let my testes work if they can. I can get probably away with even less hCG if 2,000 IU / week gave me a T level over 900. The high estrogen is still a concern.

I’m willing to hear this guy out - he’s followed Crisler and Shippen’s protocols before, so he’s aware of what the options are.

thonor-

Would be great to get an update. I had a 4cm prolactinoma diagnosed in April 2011, started treatment June 2011 with Cabergoline only. Prolactin has gone from 1700 to flatlined at 20 (ref range 5-12). T has gone up from 117 to 519 (ref range 350-1200). LH 3.6 (1.7-8.6); FSH 4.0 (1.5-12.4); Estrodiol 13.7 (7.6-42.6).

My T levels were flat lined until I started taking T-specific herbs while on the Cabergoline. However I still have low libido and only minor improvements in muscular development, I’m 6’1" 205lbs 13-14% BF and still quite depressed but more apathetic than suicidal.

Obviously your hCG stimulation result has peaked my interest. Just curious what your daily regimen is like now.

Thanks,
Nick.

I am also on the same boat. I have 3.5cm Micro adenoma and my LH and FSH at the lower end and my prolactin was at 50,. After taking Cabergoline for 4 weeks my prolactin is reduced to 2 and Total testosterone jumped form 100 to 350 , still T is very low for a 32 years guy. I will be continuing with cabergoline and see the results after a month. If things are not improved by a month i may look for SERM restart using clomid.

Thyroid:
Problem could have been from not using iodized salt which jacks up TSH levels to compensate. Pituitary was making TSH, nothing wrong there.

Please see these links found here: About the T Replacement Category - #2 by KSman

  • advice for new guys - need more info about you
  • things that damage your hormones
  • thyroid basics - check oral body temperatures as suggested.
  • protocol for injections
  • finding a TRT doc - the biggest problem