I have an odd hormone problem

[Aerose91]

Hi everyone. I haven't posted in a while but have to run this question by you as I can't figure it out.
I originally got sick in 2011 and have been on the hamster wheel ever since. However, around 2019 something changed. My hair started going gray (I was 35), I was losing hair (beard as well as face), my face became very puffy ajd my eyes looked as though they were glassed over. Since then, those issues have only compounded. My face has become a lot more rounded and my features softer (I'm a guy, btw)

This is what I can't figure out. Around 2015 I had my testosterone measured and it was around 400- pretty normal for a stagnant guy. However, I had labs done when this started in 2019 and my testosterone shot up to 1100! The only other new thing at that time was my c4a became elevated and my tgf-b doubled.

Since then, I am still getting testosterone checked and it's still climbing- its over 1400 now. That's insane, it's more than a 22 yr old on steroids.

Based on this I have a theory, at least. I don't know why my test is so high but since it is, my aromatherapy enzyme is probably also high and that is converting a bunch to estrogen so my estrogen is also high. That could account for the hair loss, puffy face and softer features. And in case anyone is thinking these things- I have had several brain MRIs done so I can rule out a tumor. The puffy face wouldn't be Cushing's because my cortisol is and always has been low. My thyroid I'm unsure of, though.

I am open to any and all suggestions. I'm pretty bummed about my face changing so much but I have to diagnose the cause of this first. I am sort of at the end of my road on what i can think of what's going on here

 

[brightside]

Can't comment on anything related to the super high test, but I had great success with both DHT and exemestane for estrogen control. Exemestane is a good option to lower aromatase, as it's a suicidal inhibitor, meaning no estrogen rebound upon cessation. It also wont nuke your estrogen completely leading to negative symptoms, and it's not harsh on lipids. Overall, one of my favorite compounds.

Exemestane by itself isn't androgenic, but roughly 40% of it converts into methylene boldenone, which is. I doubt you'd need additional androgenic stimulation with a test level of 1400.. !!! but if you think you do, I found that DHT was quite potent at achieving that. After all, it's the hormone responsible for secondary sex characteristics. That would probably help stimulate beard growth, and also antagonize estrogen's effects. Of course there's the caveat of hair loss on your head, but that's something that you may or may not get an increase of.

Also, do you know your E2 level?

You mention elevated C4a and doubled TGF-b. Could you explain your reasoning for checking those? I just remember a CIRs doctor bringing those up and mentioning something about people with CIRs having elevated aromatase enzymes.

Whatever the case, your test level is extremally high and I've got no idea how it could be that high! Many guys would be jealous, haha

 

[Springbok1988]

Have you had labs that checked luteinizing hormone (LH), sex hormone binding globulin (SHBG), human growth hormone (hGH), and/or albumin?
You said they checked for a pituitary tumor. Sometimes small ones can be missed which is why checking LH and hGH could be valuable.
Did they check for adrenal or testicular tumors? You can perform a self check at home that can help rule out a testicular tumor.
Adrenal tumors don’t always increase cortisol and can increase testosterone levels.

 

[Aerose91]

All good suggestions. I was never checked for a pituitary tumor specifically but I have had at leat 3 brain MRIs since this became an issue and certainly nothing has come up in that front.
Also, I have not had an MRI on my adrenals or testicle. I really want to start focusing on this more because it concerns me.

@brightside. I am now diagnosed with CIRS. I have all the markers: c4a, thf-b, MMP-9, MSH, VEGF, etc.. That does make me think my aromatase is too high and that's why my estrogen could be too high.

@springbook1988 My SHBG is high as is bilirubin and albumin. I don't believe I've had HGH or LH checked. Actually, my bilirubin and albumin have ALWAYS been high. I've been told I have Gilbert's Disease but there's nothing I can do about it. I have wondered for a while if my liver isn't clearing hormones properly. I'm considering seeing an endocrinologist about it. I have lost much faith in allopathic doctors but I figured they could at least scan for the big things.

 

[Aerose91]

Should also mention- I'm not sure if it matters but my total T3 one thyroid is very low. Free T3 and all other markers are good, though

 

[Garz]

some herbs are quite potent aromatase inhibitors - nettle root is one example- by inhibition of the testosterone breakdown pathway testosterone levels can get this high

after taking nettle root for a while mine went to a similar or higher level to yours and i am 54! - but it resolved when i stopped taking it

so i would check you are not taking any plant compounds with similar effects as a first stop

after that the testicular checks and scans are the next logical port of call - as testosterone is mainly made in the testis and there has to be an explanation for such high levels

as above i would also get a full sex hormone panel done to see it that gave any further clues

 

[Aerose91]

Wow Garz, that's shocking! I do sometimes put nettle in my bone broth which i make weekly. Also horsetail and oatstraw.
I was thinking that I need to ADD aromatase inhibitors but I genuinely do not know my estrogen levels. I also agree with you that I need some good blood work done, I will hopefully get a referral to an endocrinologist soon.

I had a suspicion that perhaps my liver isn't clearing hormones as I've had liver issues for most of this process. Not sure...

 

[Aerose91]

Thank you all for your input

 

[heapsreal]

As mentioned, if you aromatise alot of testosterone to E2, this could cause alot of water retention etc.
The other thing I'm thinking is your dhea and if it's high. I've seen people under stress have high levels of dhea, the adrenal hormone. This could potentially increase testosterone and E2 which could be causing these problems???
Be on the look out cause eventually some of these people's dhea will eventually plummet and leave them with adrenal fatigue/dysfunction.
Also consider a 4 times a day cortisol saliva test to see if cortisol is high during other parts of the day. You may need to try and synchronise/lower cortisol during certain times of the day, this may help with high dhea if you have it, as dhea tries to appose cortisol??

 

[Garz]

Wow Garz, that's shocking! I do sometimes put nettle in my bone broth which i make weekly. Also horsetail and oatstraw.
I was thinking that I need to ADD aromatase inhibitors but I genuinely do not know my estrogen levels. I also agree with you that I need some good blood work done, I will hopefully get a referral to an endocrinologist soon.

I had a suspicion that perhaps my liver isn't clearing hormones as I've had liver issues for most of this process. Not sure...

the leaves and stems should be fine

to my knowledge its only the root that has the strong aromatase inhibiting effects rathe than the leaves - Stephen Buhner mentioned it in his book on Testosterone support for men - will try and find and excerpt

it will not be the only plant to do this though - so worth checking if you are taking several herbs

i was using nettle root tincture 1:5 50% alcohol - around 3.75ml / day for around 3-4 months

from Stephen Buhner's book "Natural Remedies for Low Testosterone"
"Scientific Research: Of most importance in helping raise testosterone levels, nettle root has been found to inhibit the binding of dihydrotestosterone (DHT) to sex hormone binding globulin (SHBG) in human trial, thus keeping body levels of androgens higher. A general inhibition of SHBG binding has been found in other human studies and in a great many in vitro studies with human cells. Nettle root also possesses strong antiaromatase action, thus interfering with the conversion of testosterone to estradiol. This has been found to occur in the human placenta, in animal studies, and in vitro. Nettle root is specifically indicated if you suffer both BPH and low testosterone levels"

 

[brightside]

All good suggestions. I was never checked for a pituitary tumor specifically but I have had at leat 3 brain MRIs since this became an issue and certainly nothing has come up in that front.
Also, I have not had an MRI on my adrenals or testicle. I really want to start focusing on this more because it concerns me.

@brightside. I am now diagnosed with CIRS. I have all the markers: c4a, thf-b, MMP-9, MSH, VEGF, etc.. That does make me think my aromatase is too high and that's why my estrogen could be too high.

Yeah, makes sense.

I also have problems with estrogen. I've found almost nothing to work except the DHT and exemestane. In fact, 12.5mg ED is where I feel best with the exemestane. That's a pretty high dose, but I do have malabsorption, so it's not all getting absorbed. (And it's absorption sucks too)

I was also suspecting that I have CIRS, and the unnaturally high level of aromatization that I experience would make sense. Have you yet done any kind of experiments with CSM or any nasal sprays?

 

[lenora]

Hi @Aerose91.....I'm female and 77 years of age. I, too, had a small pituitary tumor which wasn't picked up by an MRI (just brand new then). Anyway, another test was used and it was quite involved...probably the old way of doing things, but it did confirm what the doctor suspected and led to recovery (from that, at least).

A drug called bromocriptine was prescribed by an endocrinologist and I took it for probably 20 years or more.
If you'd like to try nettle first, fine....but if I were in your place, I would definitely want at least a diagnosis and the proper tests run.

I was fine on bromocriptine, no complaints, and it did the job. I was very young at the time, so perhaps I was just lucky....I don't know. My main point, is to get a proper diagnosis...I wouldn't play around with a diagnosis you're unsure of. Wishing you well. Yours, Lenora

 

[Aerose91]

Actually my DHEA is normal but cortisol is quite low. I also ghought dhea would be low but nope

 

[xploit316]

@Aerose91 Have you done tests to check your liver and thyroid health? My bloated face (apparantly due to hypothyroidism) did not resolve with thyroid meds. Instead a 2 week prescription course of Rifaximin reduced the puffiness by about 25-30%. I have read Rifaximin helps in Hepatic encephalopathy.
https://www.nejm.org/doi/full/10.1056/nejmoa0907893

 

[Aerose91]

It's funny you say that. No, my liver and thyroid are not ok. In fact, they have been a problem since the beginning. I have been tested twice for hepatic encephalopathy and Wilson's Disease and luckily those were clear. But I do have Gilberts Disease and my bilirubin is always high. It feels like everything I eat/do is catered toward my gut and liver. I wonder if I will have to do that for the rest of my life.