Very Low T, High Prolactin, and Terrified/Overwhelmed

Hey guys, I’m just looking for some guidance. Let just start by posting the basics about myself that I found from one of the sticky threads:

age- 31
height- 6’2"
weight- 210
waist- 34
describe body and facial hair- normal facial hair, little to no chest hair, hair on legs, underarms, and stomach
did to grow fast or slow and steady as a teen- I grew to about my current height around 9th grade, was about 130lbs at the time and then gradually filled into my current weight
testes ache or hurt? ever?- testes don’t hurt of ache now but when I was in late teens early twenties, they did some (always thought it was because I went to long without sex)
mood-high highs and then sudden deep lows
depression-yes often
libido-as of now, pretty much non-existent
get cold easily? a change?-yes, hands and feet are always cold
dry skin, brittle nails?-extremely dry skin, have to apply lotion on entire body after and shower and to hands everytime after I wash my hands. skin gets very white and scaley feeling
use iodized salt?-sometimes
eat much sea food?-sometimes
exposure to chemicals? -not that I’m aware of
ever used hair loss drugs?- no
Rx and OTC drugs-none except a multivitamin

I have had digestive issues basically since I hit puberty. They became progressively worse during my college years from age 22 to 28. It got to point that I would have to make sure I got to college early on test days so I could go to the bathroom before the exam. It progressed to the point that I had to start taking my tests in a special testing centers because I was having silent panic attacks due to my digestive problems at the start of every college exam. It was also around this time that I start to live in a constant state of exhaustion. I basically chaulked it up to nerves and potentially having ibs since ibs runs in my family a bit. At 28, I started seeing a gastroenterologist for my stomach problems thinking that would solve all of my issues. Essentially, he told me I had ibs and prescribed an anticholinergic. It helped my stomach issues a bit. I had to stop taking the anticholinergic because it left my brain in a constant fog and stopped helping my stomach issues. I had pretty much run into a dead end with the gastro and stopped persuing my medical issues.

A couple of years pasted and now I’m 31. I haven’t had a super strong sex drive since my late teens but recently I began loosing erections in the middle of sex, becoming extremely fatigued every single day now matter how long I slept, and worsening brain fog despite no longer taking any medication. I read up some on low testosterone and decided to see my doctor to have it tested. I also thought that perhaps if I had a testosterone issue, it could also be related to my digestive issues. Perhaps, decreasing the ability to synthesize protein? I received my test results back and low and behold my testosterone levels were extremely low, cholesterol was high despite not being extremely overweight, vitamin d was insufficient, and prolactin levels were very high. (below are the labs).

My doctor has put me on a vitamin d supplement and referred me to an endocrinologist for the low t/prolactin issues. I’ve read through some of the stickies on this site and they are a wealth of information. I guess I’m just looking for some guidance of what to expect. Should I expect the endocrinologist to put me on cabergoline to try to lower my prolactin and would this in turn raise my testosterone? Or should cabergoline and trt be expected at the same time? Could this explain my digestive issues? I also have a lot of issues with my belly bloating and gas. Could this be indicative of an estradiol? Thanks so much in advance.

Testosterone, Total 122ng/dL range 300-1080ng/dL
Testosterone, Free 20 pg/mL range 47-244pg/mL
Testosterone %Free 1.7 range 1.6-2.9%
Prolactin 52 ng/mL range 3 - 14 ng/mL
Vitamin D 29ng/ml range 30-100ng/ml
TSH 2.25uIU/ml range 0.34-5.60uIU/ml
T4 Free 0.8ng/dL range 0.6-1.1ng/dL
Cholesterol, Total 221 <200 desirable
Triglycerides 117 <150mg/dL normal
HDL Cholesterol 45 <40mg/dL low and >59 high
LDL Cholesterol 153 <100 mg/dL optimal

It may also be of note that my Monocytes are at 9% where 0-8% are normal range. Looking back at a checkup a year earlier, Monocytes were 11% so they always run high. I’ve read that high monocytes can be an indicative of inflammation in the body. Also in a year ALT dropped from 21 (range 17 - 63IU/L normal) to 11. And AST dropped from 21 (range 15-41IU/L normal) to 16. I’ve read that both of these relate to the liver. My doctor said these did not concern her though but I would love to here opinions here too.

Fellow noob here. Welcome to the fray.

Your TSH is high. That seems to indicate hypothryoidism. Take your temperature (under the tounge) in the morning and at midday, post the results. Supplementing iodine is cheap, easy, and a good first step.

T is very low. Prolactin is high, but apparently 200 seems to be the cutoff for pituitary cancer, so that’s possibly good news.

Definitely follow up with another Dr. Read the “finding a TRT doc.”

As far as the gas issues go, have you tried cutting out milk and unfermented cheeses (mozzarella, cottage cheese, cream cheese, ice cream)? You are at the age where lactose intolerance can start. I avoid these items and my gas has improved tremendously. Lactose probiotic can also help to a degree.

You want LH and FSH tests to identify if you have primary (testicle failure) or secondary (pituitary failure) hypogonadism.

Good luck, I’m sure more experienced people will weigh in soon.

Thanks for the reply, Gonad. Yeah I had read the post where KSman was saying your TSH should be closer to 1.0 so that concerned me too. I haven’t taken my temperature in the morning yet but I’m going to try to do that tomorrow. I know my multivitamin has 200 mcg of selenium in it, not sure if that is enough. Iodine is something I definitely need to look into. I guess what really worries me is where my testosterone is so low and prolactin high. As far as the digestive issues, I’ve tried about everything you can. I tried cutting out dairy, gluten, tried the paleo diet, fodmap, and the list goes on. I basically became a hobbiest gastroenterologist.

Now I’m kind of wondering if I was focusing on the symptom and not the cause and have had hormone issues for a long time now. Aside from the digestive problems, I have terrible anxiety, joint pain, brain fog, short term memory issues, no sex drive, muscle wasting in upper legs. I just feel like between the low testosterone, high prolactin, skewed tsh, I don’t know what is causing what.

Have you ever had an mri to check for pituitary tumour?

That would explain your high prolactin and would also suppress your test production. Sounds bad but is often easily treated with carbonoline to reduce prolactin levels and shrink tumour. Surely your doctor has suggested mri?

Pretty much as soon as my doctor saw the abnormal prolactin levels, she referred me to an endocrinologist. I haven’t had the appointment with the endocrinologist yet though. She did mention that the endocrinologist will probably order an mri to look for a pituitary tumor though. She didn’t want to order it herself because she was afraid insurance would reject since it wasn’t ordered by a specialist. I’ve read some about pituitary tumors and cabergoline. I’m kind of curious if the endocrinologist will want to do the caber and trt or just the caber at first. I just want to do whatever makes me feel better

My wife has just had mri and found 8mm pituitary tumour, her prolactin numbers were very similar to yours. Put on 0.5 of cabor once a week, not yet had follow up to see if it’s working.

its sounds very bad but is quite common, if it is the cause it’s very responsive to treatment and hopefully your system will bounce back once the prolactin stops suppressing.

will have to be patient and wait for scan.

Anxiety: Nope, I barely gave a rat’s ass about anything. That had its strengths, I actually miss that part.
Joint pain: Big time. I have knee sleeves (helped a lot) and a neoprene shoulder thing that works ok. I had to deload a bunch of times just because of the joint pain.
Brain fog: Check
Short term memory issues: I was living my own personal version of “Momento”. If I didn’t write it down, it was gone.
No sex drive: Greatly reduced. Actually just said to the wife today: “Hey, I’m starting to feel like myself again. I’m looking at you less as a person and more like a piece of meat.” Lol.
muscle wasting: I didn’t notice this per se, but I do lift as much as I can. Sad to say, but I probably reached my “genetic maximum” for a guy with a T level of 195. I am not large, people can tell I lift, but probably only because I have really broad shoulders to begin with.

BTW, between ridding myself of lactose, beans and sorbitol that totally took care of my gas problems. They actually sneak sorbitol into more and more stuff these days. Google “amazon review sugar free gummy bears” if you want to know more. That said, people react differently to this stuff. Take care of your hormone levels and see if the bloating resolves.

You went down the gastro route, I thought my problems were because of allergies. Seems low T isn’t on the radar for most.

I hope everything goes well for her, kd. I certainly hope my system bounces back but I can’t help but to think this is something that I’ve had going on for a number of years now and I’m just now finding out about it.

Gonad, I used to work out religiously. Once I start to get my hormones lined out and have some energy again, I plan on attacking the gym like I used. It’s good to talk to people on here that are going through similar issues.

Thanks, it’s a weird situation really because although finding a tumour is worrying, it’s also an explanation as to the problems she was having for the past few years (which we thought was ovarian failure due to the fertility doctors not bothering to test prolactin before or after our ivf treatment) so fingers crossed things return to normal and we get some happier news.

all the best to you too and I hope you find a cause and suitable treatment.

I recently made another tread… I got a TRT Rx for low T but haven’t used it yet… I got prolactin checked and mine was also high (44) and I have been doing IR for about 4 days now and have an appointment to an Endo in a month… I read that tumors would cause prolactin to be up around 200. I’m not really sure what route to go either brah and don’t really wanna get on TRT til I’m a little older. I hope I can get the source of the problem and feel normal again without having to get on TRT. I’ll follow your thread too.

@gymbrah I’m going to try to keep this thread updated as I go through this process. I read through your thread and it sounds like we are very similar age, body composition, and symptoms. I guess as far as trt is concerned, I would prefer to not be on it but if it is what I need in combination with caber to feel like a normal person, I can deal with that. I’m going to follow your story too. It should be interesting comparing notes as we go through this process.

Gonad, I used to work out religiously. Once I start to get my hormones
lined out and have some energy again, I plan on attacking the gym like I
used. It’s good to talk to people on here that are going through
similar issues.

Yeah, in retrospect, I’m amazed I was able to grind out what I did with my T level. One week on clomid I have more results lifting than almost 2 months lifting before. It was very discouraging, but I think I thought it was normal. I can see getting away from it with all the pain and very little gain.

Once you get everything sorted I bet lifting will be a joy again.

I’m posting my experiences in my thread too, it has been life-changing for me.

@gymbrah I posted the 200 prolactin number which is what my doctor told me, but since then Dr Google has said levels around 50 are a concern too.

Again, I’m not an expert, just a random internet dude who learned his nutsack wasn’t working 3 weeks ago. I’m also not a particularly large internet dude either, I posted my lifts in my thread, and they aren’t anything to brag about.

Just a small update. My original endocrinologist appointment was on April 7 but I managed to get the appointment switched to a different endocrinologist in the same group that can see me on Tuesday. So I went from almost a month out from starting this process to it just being a few days away. I’m nervous and excited about starting this. This is endo is alot more of a newbie than the other endo but I saw on the medical groups website that his interests were in the effect of nutrition and strength/conditioning on body composition. This gives me hope that maybe he has done his homework on testosterone issues as well. Also took my temp as soon as I got up this morning and I was at 97.2 degrees so apparently I’ve got something up with my thyroid too considering my levels and temp. I need to do some more reading on this site but I’ve been looking into potentially getting an iodine supplement.

1 Like

I celd84, i have an important advice for you. I´m MD at Colombia, and reading your post, can see the same symptoms i have suffered (Brain fog**, very low T (1.2), High PRL (125), low sex drive, severe mood changes, depression (The worst symptom), high cholesterol levels, diggestive issues (Bloating, gas, in my case, + severe constipation), low Vitamin D, ( + Anemia, skin rash, cheilitis, dates with gastro´s with an IBS diagnostic, endocrinologist + cabergoline). No success).

The culprit: Gluten (+ posterior severe sensitivities added late: Dairy, salycilates, fodmaps, ATI´s).

Please do an strict gluten free diet for 15 days, and evaluate the changes (you will be better from Depression, bloating, constipation), if thats the case, tell the gastro, to get a test for celiac disease. My case was NCGS, not celiac. At now, PRL at 125 (!!), but very very well, without gluten and the rest, and helminthic therapy. Not cured at all, but tolerating more, and better mood and sex drive.

It is an very difficult diagnosis, ando you could be years missed. Do the test. Sorry my poor english, and my best wishes.

I was also similar to your situation couple of months ago. My prolactin was at 52ng/mL and Total was at 100ng/dL. I have benign pitutary tumor. After taking cabergoline prolaction is reduced to 2ng/DL and Total is around 650ng/dL. I am still recovering and very liitle improvement on libido. My testicles were reduced in size . My TSH is high too (7.5 uIU/ml). Right now taking Cabergoline and levo thyroxine and hoping it will imporve my overall health , mood and libido.