I would be really grateful for any help understanding my blood test results.

[spongebob]

Hi guys, I will try to give you as much info as i can without being too long winded and thank you for any insight you can give me as the gp says they don't know much about it and i am on a waiting list for the endo.

I am 32 years old, been suffering from chronic acne since 13 yrs of age. Have had erectile dysfunction since the age of 14 yrs old. As of this last year have been suffering from uncontrollable weight gain currently 80kg at 5ft 8inches an hairloss despite proper weight training 4 days a week at the gym. I was 60kg. So gained 20kg within a year.

I take a drug Depakote to control seizures for years now.

The weight gain looks like water retention to me but i can't be certain. I am extremely tired all the time and i have no real libido. All i wanna do after the gym is sleep for hours an hours. It is very difficult getting out of bed in the morning an i have no morning wood, well very rarely but it has been that way going on 18 years now.

I have a big cyst on my right testicle since the age of 14 years and testicular microlithiasis all over both testicles.
I had a mri with contrast last year that showed 3 microadenomas, biggest one was 4mm and i was assured that it was not big enough to cause any issues. Fast forward to today an these are the only results i have been given below.

LH is 14.0mIU/mL
sbgh is 121 nmol/l
Total testosterone is 1277 ng/dl
TSH is 3.5 mU/L

My total testosterone last March was 414 ng/dl then on november it was 1077.80 ng/dl and then by january this year it was 1222 ng/dl and of course my latest results from a few weeks ago is 1277 ng/dl

I don't know what is wrong with me, if i knew the possible causes at play here, i would settle down a bit but all i feel is frustrated because my life has been wasted because of the erectile dysfunction an acne oily skin, an now the onslaught of other problems. Again guys any help from yous would be very much appreciated.

 

[Systemlord]

Can you please include lab ranges, you're missing a lot of labs and high estrogen can easily explain the water weight gain. LH looks high and usually indicates testicles are damaged but not in your case, however the high SHBG is forcing your endocrine system into overdrive in an attempt to compete with your insanely high SHBG levels that are surely shrinking your free T, then your pituitary gland increases LH to get more testosterone to increase what little free T you have available.

Your endocrine system is responding strongly, but unfortunately it's not enough at this point do to what I suspect is the Depakote causing all your endocrine system dysfunction. Erectile dysfunction is found among people who take Depakote or anyone who takes an anticonvulsants. I also suspect the medication you're taking is very likely increasing your SHBG levels which lower the available free hormones to your body, most anticonvulsants raise SHBG and lower free hormones.

You've traded one health problem for another which often what happens when medications like anticonvulsant are introduced to the body.

I was on Klonopin for 30 years and experienced high SHBG as a result, never had any get up and go on this medication because it lowered my free hormones, always felt fatigued and could never really enjoy physical activities. Don't let a doctor tell you your thyroid is fine because it's in the normal ranges, this is a mistake that most doctors make an understand thyroid very little.

Most progressive doctors (non-insurance based) begin treating thyroid when TSH gets above 2.5 instead of waiting for you to reach disease status when things can get no worse. You most definitely have hypothyroid symptoms given your TSH, so you have multiple issues going on all at the same time.

Attempting to address your endocrine system disruption while on Depakote will be impossible as it's likely the cause.

https://www.ncbi.nlm.nih.gov/pubmed/16981858

The endocrine effects of carbamazepine and oxcarbazepine were different in that carbamazepine seems to decrease the bioactivity of androgens and oxcarbazepine does not. Serum levels of dehydroepiandrosterone sulfate (DHEAS) were low in men on carbamazepine, and sex hormone-binding globulin (SHBG) concentrations were high.

When did you first start taking the Depakote?

Labs you will need are located in link -> https://www.excelmale.com/forum/showthread.php?1956-Suggested-Lab-Tests-and-Questions-Before-and-After-Initiation-of-Testosterone-Replacement

 

[spongebob]

Hi Systemlord, i am in the uk and the gp surgery where we live don't give out the lab ranges. We are lucky when we get figures instead of "your results are high or low, normal" speech. They are very unwilling to discuss results afraid that we will read too much into it if they are borderline high or low.

From the forum i see i am missing a myriad of blood tests, i will have to wait it out till the endo gets back to me i guess as the gp is limited in what blood tests they will issue. So you have been suffering epilepsy too? What course of action did you have to take in order to get your sbgh under control. I fear my testicles are damaged and that i may have to take testostrone replacement. Although the way i am functioning now, it would better that i shutdown my testicles for artificial testosterone.

Estrogen, if my estrogen is lowered then i could potentially lose that water weight. I will look into that. When you say this battle cant be won, you mean it's a viscous circle and medical intervention is the only hope? I have been on the Depakote 6 years now 2 grams per day. I dont know if it was the culprit because i have had erectile dysfunction for 18 years. I am screwed i guess.

My gp said thyroid was fine an not to worry about it but i know that is not the truth from what i have read online, no one in the uk will treat tsh levels below 4. Until then they will not warrant further investigation on the thyroid.

 

[Systemlord]

They are very unwilling to discuss results afraid that we will read too much into it if they are borderline high or low.

The UK medical system is a joke, they don't want to give you (labs scores) ammunition in order to prove your case and then getting treatment. State healthcare systems put up roadblocks in your path to deny treatment to those they deem not the worst cases, if the NHS gave everyone treatment who had systems it would drain funding dry. NHS doctors will not understand much of what I stated related to SHBG, it's just beyond their comprehension, going private is your only hope and get out of the NHS.

I took Klonopin to control my Tourette Syndrome which after stopping the Klonopin there were no symptoms, but withdrawing off of it tanked my testosterone levels for which never recovered. My body couldn't function properly without it. SHBG fell back to normal levels after stopping Klonopin. I went from high to low SHBG over the course of 10 months, that's how long it took to withdraw.

You can fight and win if you persist, you need to find a sympathetic doctor. My thyroid is at .580 and you're at the other end of the spectrum with symptoms. TSH is high because thyroid hormones are not, those weren't even checked.

 

[spongebob]

Thanks again systemlord, The NHS are wasting my time and i don't hold out much hope of ever getting the help i need from them. It's amazing that they are more than happy to force us to pay national insurance an yet treat us like the plague when we ask for any clarification regarding our health status.

I asked the gp a few months ago if i could go private to speed the process up (yes we have to ask the gp for permission to get a private referral lol) he said for me to wait it out because i was already on the list from the previous years endo consultation who doesn't do private work.

An guess who the other private specialists are, the same people that work for the NHS. It is one big joke.
I was told that if i seen a different specialist that i would have to repeat the tests all over again etc because the specialist would be starting from scratch an essentially i would still be seeing an NHS consultant only i would be paying for it with not only national insurance but also with cash.

 

[Systemlord]

Thanks again systemlord, The NHS are wasting my time and i don't hold out much hope of ever getting the help i need from them. It's amazing that they are more than happy to force us to pay national insurance an yet treat us like the plague when we ask for any clarification regarding our health status.

I asked the gp a few months ago if i could go private to speed the process up (yes we have to ask the gp for permission to get a private referral lol) he said for me to wait it out because i was already on the list from the previous years endo consultation who doesn't do private work.

An guess who the other private specialists are, the same people that work for the NHS. It is one big joke.
I was told that if i seen a different specialist that i would have to repeat the tests all over again etc because the specialist would be starting from scratch an essentially i would still be seeing an NHS consultant only i would be paying for it with not only national insurance but also with cash.

You could always come here and get treatment, then go back home every 6-12 months, if money isn't really an issue of course. There are doctors here who with one look at your labs and based off your symptoms would know exactly what needs to be done, it would be an amazing experience, but most are cash pay only.

 

[spongebob]

If they don't sort me out by summer, i will have zero choice left but to head over to the US.
I can't continue like this, my health is more important than money. If i do i will be sure to let you's know.

 

[strum]

I am a MD, focused on prostate cancer but well versed in the endocrinology of male hormones. A few points, in no particular order.

Your TSH of 3.5 does not indicate you are definitely clinically or even biochemically hypothyroid. First, we need to know the normal range which you said was not given to patients in the UK. Second, obtaining a free T3 and a free T4 could clarify your thyroid status. Knowing if you have symptomatology associated with thyroid dysfunction would also be of help. Please google "hypothyroidism" and see if you have any problems. At 3.5 it is not likely.

Your total testosterone is way up there. If your testicles were damaged this would not be the case and your LH levels, if you had primary hypogonadism due to testicular disease, would be in the 30s but a lot higher than 14. Again, knowing the normal range and knowing past lab values is very important.

Obtaining a free testosterone is often not done and it is important. Your acne could be related to your high testo levels-- just as boys going into puberty have acne due to a testosterone surge.

Obtaining an estradiol level (E2) would be important given the very high total testosterone. Note that I am assuming your are not on TRT (testosterone replacement therapy). At high levels of testosterone it is common to see aromatase convert T (testosterone) to E2. If so, it would be likely that you have gynecomastia. Any term you do not know please Google. BTW, if you had testicular failure (hypogonadism) then where is the total testosterone coming from?

Please clarify some of the issues above, especially that you are not on TRT. And tell us about the MRI. MRI of what specific site? Pituitary? There is much missing in your history. With your problems starting in adolescence I am perplexed that you were never seen by a pediatric endocrinologist. I have colleagues in the UK who are very prominent and who may be able to give further direction re physicians that can sort out your problem. I feel badly for the years you have spent dealing with these issues.

Stephen B. Strum, MD, FACP
Jacksonville, Oregon, USA

 

[CoastWatcher]

Where - in the UK - do you live? We have some (few) contacts in private practice, active here on EM, that may be able to help you.

 

[Dr Justin Saya MD]

That SHBG is in the stratosphere and, even with the relatively high total testosterone, is possible free testosterone is low or low-normal.

 

[spongebob]

Where - in the UK - do you live? We have some (few) contacts in private practice, active here on EM, that may be able to help you.

Hi guys sorry i went AWOL, I had to wait an see if my current endocrinologist was going to act on the results. It wasn't to be. He recommended observation only.

This isn't good situation for me as the next appointment is not for months and i am very symptomatic.
I don't currently and never have taken TRT, steroids or testosterone boosters etc.

My total testosterone and free testosterone is high. I even tested high with the flu. I have recently started to notice puffy nipples in the shower and when its warm my chest looks puffy, i am guessing that i also have high estrogen too with high testosterone.I

don't have the new test results figures, i have never been been tested for estrogen.
I do have a 3 microadenomas on my pituitary gland.

If any endocrinologist specializes in my current situation in Northern ireland and is prepared to help lower/balance out my hormones or if you can recommend anyone CoastWatcher, strum i would be very thankful for your help. I know my situation is the opposite of what yous normally deal with but i assure you that too much testosterone is having a detrimental effect on me. I really appreciate all your help.

 

[Systemlord]

You can't have high free T with SHBG that high, you doctor is likely missing the role SHBG plays on out testosterone. Normal testosterone and SHBG levels typically see 2-3% of your free T available to your body, high SHBG usually see your free T low do to the majority of your testosterone (97%) being bound to SHBG, so the more SHBG you have the less free T you have available to the body. Microadenomas don't affect the liver's production of SHBG which is your main problem, your pituitary gland is responding as it should be.

All your testosterone is bound to SHBG, your free T is abysmal and this is why you feel so terrible. Lowering your hormones will only make the situation worse, you will be unable to lower the livers output of excess SHBG by lowering your hormones. There's no way to affect SHBG directly. TSH is terrible and can imagine thyroid hormones are no better. Your wasting time with this doctor trying to lower your hormones.

An experienced hormone specialists in Northern Ireland, unlikely.

https://naturalbiohealth.com/2015/05/06/shbg-critical-to-your-health/

 

[spongebob]

Hi systemlord, the doctor said the straight free testosterone blood test came back high. He did mention that the shbg was high but never commented further on it.

This is why i am looking for an alternative private sector doctor, because my current doctor has decided not to take any action.

I think i will just have to try my luck with one of the consultants in one of the independent clinics and hope that he/she knows what they are doing. Unfortunately my thyroid tsh levels are not high enough for any doctor to take seriously over here in the uk. Thanks for the link

 

[Systemlord]

Hi systemlord, the doctor said the straight free testosterone blood test came back high. He did mention that the shbg was high but never commented further on it.

This is why i am looking for an alternative private sector doctor, because my current doctor has decided not to take any action.

I think i will just have to try my luck with one of the consultants in one of the independent clinics and hope that he/she knows what they are doing. Unfortunately my thyroid tsh levels are not high enough for any doctor to take seriously over here in the uk. Thanks for the link

There's the problem, he should be commenting on it if he understands its relevance. Relying on TSH only testing is like relying on LH labs without regard for total testosterone and free testosterone for determining a deficiency. This is probably what they teach in medical school, that TSH only testing is the way to go.

Nothing will improve as long as your on Depakote, drastically increases SHBG in men for those that use it long term.

 

[spongebob]

Thanks for the clarification Systemlord. Well I hope i get lucky with the next consultant, at least i will be seen straight away. At least thats something i guess.

 

[CoastWatcher]

http://themenshealthclinic.co.uk/

Dr. Robert Stevens is a member here and...in Dorset. Other end of the world for you in Northern Ireland. None the less, call his clinic, explain you're a member here and see what - if anything - can be worked out (including a local referral for you).

 

[spongebob]

http://themenshealthclinic.co.uk/

Dr. Robert Stevens is a member here and...in Dorset. Other end of the world for you in Northern Ireland. None the less, call his clinic, explain you're a member here and see what - if anything - can be worked out (including a local referral for you).

Thank you for this CoastWatcher. I will be sure to call him tomorrow. Hopefully something can be sorted.

 

[CoastWatcher]

Thank you for this CoastWatcher. I will be sure to call him tomorrow. Hopefully something can be sorted.

Ever so slowly, guys in the UK are getting better treatment. But it's still difficult. For every Dr. Stevens, well, there's the NHS preventing men from accessing the care they need.