Need libido/dysautonomia help please read entirely!

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Was on trt and a super low dose of proviron 12.5 mg a day sometimes 2 x a day. About 120mg test. Felt great for 5 years. Then all of a sudden I got heart racing headaches ect. Symptoms of autonomic dysfunction. So they tried taking me off the test but the lowest I can get to is 20mg a week in a single shot. Any lower and dysautonomia is unbearable. My lh and fsh have returned to normal levels but lower normal as they were before trt. Weirdly lost all sensitivity and libido at the end of trt but coming off has been hell. Xanax and only xanax made erections possible. No morning erections even at the end of trt. Heart tests came back okay on trt but couldn't tolerate any bp meds. Then now at 2pmg my Bo ent sky high in stress test and they had to stop. What do I do from here? I feel stuck and now I'm tapering away from xanax using diazepam which is hell in its own eight but short usage so doable. Gaining weight just completely exercise intolerant. I'm so lost on where to go from here. Docs even endos have offered trt again but I had issues out of the blue towards the end of my normal trt. Just sont know what went wrong and I. Getting pretty desperate. Feel very helpless. Is there anyone with a knowledge or knows a doc that can maybe help this situation?. I'm losing hope

TLDR; Stop panicking. Stop reading. Get a beta blocker (use Metoporol XL, name brand - generics suck). Get a good doctor to help you eventually get off the benzos later. Stay hydrated. Rest. Reduce stress. Stop working out for weeks/months. Slowly re-introduce exercise with a recumbent bike and swimming. Your HPA axis will reset. You'll be fine.

I had this EXACT same shit in 2007 that I thought was going to kill me. I went to every emergency room and specialist around and got labeled the “anxiety guy” by the Mayo Clinic (although I really had a problem, which other doctors confirmed later).

After 8 months of suffering, I traveled 2,000 miles to the University of Michigan for a definitive answer in 2008. Turned out my problem had to do with adrenaline sensitivity, insulin sensitivity and other neuroendocrine stuff (HPA axis) - testosterone and anxiety made it worse.

At one point they thought I had reactive hypoglycemia (I did, but that was not all). A few doctors thought I had pseudopheochromocytoma (of course!). But according to the UofM doctor who specialized in the amygdala and HPA axis stuff, stress hormones are what drives this POTS/dysautonomia problem. Something goes out of whack and testosterone + adrenal fatigue has something to do with it in our case. With menopausal women, female hormones have something to do with them. I hear that covid can also cause this, but my problem wasn't caused by covid.

My ACTH for example (which drives cortisol among other things) was way, way out of whack. I had inappropriate responses to adrenaline. I would be sitting down with a blood pressure of 90/60 (low) and a heart rate of 60, then stand up, and instantly red in the face, ears ringing, heart racing (150bpm), and my blood pressure would shoot up to 210/110. That was scary shit, and I can’t tell you how many emergency rooms I visited - and I scared the shit out of every ER doctor. My poor wife and kid. We all thought I was dying.

Testosterone’s role in increasing adrenal sensitivity had something to do with my case, but only because of the improper stress response and adrenal issues I had going on (I overtrained for one thing, had work stress, etc.). There are other components - aldosterone, serotonin/dopamine, etc. and I can't remember what all the UofM doctor brought up. You get stuck in an anxiety loop of real physical symptoms that scares the living shit out of you, which causes more anxiety, and more real problems.

My solution was that I stopped working out entirely. I unplugged from stress (including work, and severed a relationship with a family member). I rested as much as possible. I took liposomal vitamin c to support my adrenals, and magnesium to relax. I lowered my dose of Synthroid (I have thyroid problems) and got my TSH up to a range where I wasn't hyperthyroid (but also not hypo). I stopped consuming sugar entirely and I cleaned up my diet. I stopped all caffeine. I started drinking Pedyalyte diluted with water and that helped a lot because my aldosterone was messed up. Some people with POTS get put on fludrocortisone. But I didn't want to start taking things that I might get stuck on for life. I completely went off testosterone but in hindsight I should have kept a low dose going (I've been back on TRT since 2014 though). A cardiologist prescribed 50mg Toporol XL (this helped a lot and I still take it for other reasons). That helped with the hyperadrenergic stuff.

The main thing that helped me though, is that while I knew something was wrong with me, I had to stop panicking about it. I had to stop researching myself into a panic. The more I read and worried, the worse it got - because again it is all driven by stress hormones. And let me tell you, there's some scary shit out there that you don't want to read - but it's all moot point. Once you stop the anxiety, this condition will improve. You just can't heal and reset your HPA axis if you're always worrying.

The stress hormones will just not stop unless you make the conscious decision to say “fuck it.” You can literally read yourself to death - I nearly did! I dropped to 135lbs from 195 and from doing power lifting to losing ALL my muscle (I quit eating and was off TRT). I looked like an emaciated pale corpse with my eyes sunken and cheekbones sticking out - people thought I had AIDs or was on chemo, and I was planning to die.

Yes, I really had a dysautonomia problem, but the more I worried about it, the worse I got. I made myself sick from worrying. Bonus tip: STAY THE HELL OUT OF THE POTS/DYSOTONOMIA GROUPS! Those people feed off of each other's negativity and they’re a bunch of whiney old ladies. All doom and gloom. Sickos!

Rest a while, then slowly start exercising again, but do not walk on treadmill if you still feel POTSY, instead use a recumbent bike, or swim. Always be hydrated with electrolytes before exercising. If you have baroreceptor problems from this, walking on a treadmill is hell. You know what I mean. But exercise is important to recover, if you do it carefully and slowly. Now that I'm back to normal, I can run like a striped ass ape, do deadlifts, whatever I want. But it took time to get back to normal. I could not lift 15lbs for a year.

Give yourself a few months. Reduce stress. Hell, sell your house and move to the country, or whatever it takes to destress and make you happy. Preoccupy your mind. You'll be able to go back up on T, and slowly start working out again. Rest a lot, don't worry, keep your blood pressure under control but don't freak out about it, and you'll be fine eventually. Might take weeks or months, but trust it will get better. If you check your heart rate and blood pressure all the time, stop that shit. Let your doctor handle that.

Get off those benzos as soon as you can (with the help of a doctor), but don't go off cold turkey and don't do it now – that’s the opposite of what you need. Benzos will stop working one day, and you'll be at such a high dose when that happens, you'll be sorry. First, try to support your adrenals, stop panicking, have a good doctor you trust who will prescribe whatever beta blocker you might need to get through this, get this shit under control first, then work off the benzos slowly. Might take years. You’ll be fine.

With that said, I have to do the disclaimer - I'm not a doctor, and you need a doctor's opinion. Unfortunately, this is too complicated for most doctors to give a shit about.
 
Last edited:
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TLDR; Stop panicking. Stop reading. Get a beta blocker (use Metoporol XL, name brand - generics suck). Get a good doctor to help you eventually get off the benzos later. Stay hydrated. Rest. Reduce stress. Stop working out for weeks/months. Slowly re-introduce exercise with a recumbent bike and swimming. Your HPA axis will reset. You'll be fine.

I had this EXACT same shit in 2007 that I thought was going to kill me. I went to every emergency room and specialist around and got labeled the “anxiety guy” by the Mayo Clinic (although I really had a problem, which other doctors confirmed later).

After 8 months of suffering, I traveled 2,000 miles to the University of Michigan for a definitive answer in 2008. Turned out my problem had to do with adrenaline sensitivity, insulin sensitivity and other neuroendocrine stuff (HPA axis) - testosterone and anxiety made it worse.

At one point they thought I had reactive hypoglycemia (I did, but that was not all). A few doctors thought I had pseudopheochromocytoma (of course!). But according to the UofM doctor who specialized in the amygdala and HPA axis stuff, stress hormones are what drives this POTS/dysautonomia problem. Something goes out of whack and testosterone + adrenal fatigue has something to do with it in our case. With menopausal women, female hormones have something to do with them. I hear that covid can also cause this, but my problem wasn't caused by covid.

My ACTH for example (which drives cortisol among other things) was way, way out of whack. I had inappropriate responses to adrenaline. I would be sitting down with a blood pressure of 90/60 (low) and a heart rate of 60, then stand up, and instantly red in the face, ears ringing, heart racing (150bpm), and my blood pressure would shoot up to 210/110. That was scary shit, and I can’t tell you how many emergency rooms I visited - and I scared the shit out of every ER doctor. My poor wife and kid. We all thought I was dying.

Testosterone’s role in increasing adrenal sensitivity had something to do with my case, but only because of the improper stress response and adrenal issues I had going on (I overtrained for one thing, had work stress, etc.). There are other components - aldosterone, serotonin/dopamine, etc. and I can't remember what all the UofM doctor brought up. You get stuck in an anxiety loop of real physical symptoms that scares the living shit out of you, which causes more anxiety, and more real problems.

My solution was that I stopped working out entirely. I unplugged from stress (including work, and severed a relationship with a family member). I rested as much as possible. I took liposomal vitamin c to support my adrenals, and magnesium to relax. I lowered my dose of Synthroid (I have thyroid problems) and got my TSH up to a range where I wasn't hyperthyroid (but also not hypo). I stopped consuming sugar entirely and I cleaned up my diet. I stopped all caffeine. I started drinking Pedyalyte diluted with water and that helped a lot because my aldosterone was messed up. Some people with POTS get put on fludrocortisone. But I didn't want to start taking things that I might get stuck on for life. I completely went off testosterone but in hindsight I should have kept a low dose going (I've been back on TRT since 2014 though). A cardiologist prescribed 50mg Toporol XL (this helped a lot and I still take it for other reasons). That helped with the hyperadrenergic stuff.

The main thing that helped me though, is that while I knew something was wrong with me, I had to stop panicking about it. I had to stop researching myself into a panic. The more I read and worried, the worse it got - because again it is all driven by stress hormones. And let me tell you, there's some scary shit out there that you don't want to read - but it's all moot point. Once you stop the anxiety, this condition will improve. You just can't heal and reset your HPA axis if you're always worrying.

The stress hormones will just not stop unless you make the conscious decision to say “fuck it.” You can literally read yourself to death - I nearly did! I dropped to 135lbs from 195 and from doing power lifting to losing ALL my muscle (I quit eating and was off TRT). I looked like an emaciated pale corpse with my eyes sunken and cheekbones sticking out - people thought I had AIDs or was on chemo, and I was planning to die.

Yes, I really had a dysautonomia problem, but the more I worried about it, the worse I got. I made myself sick from worrying. Bonus tip: STAY THE HELL OUT OF THE POTS/DYSOTONOMIA GROUPS! Those people feed off of each other's negativity and they’re a bunch of whiney old ladies. All doom and gloom. Sickos!

Rest a while, then slowly start exercising again, but do not walk on treadmill if you still feel POTSY, instead use a recumbent bike, or swim. Always be hydrated with electrolytes before exercising. If you have baroreceptor problems from this, walking on a treadmill is hell. You know what I mean. But exercise is important to recover, if you do it carefully and slowly. Now that I'm back to normal, I can run like a striped ass ape, do deadlifts, whatever I want. But it took time to get back to normal. I could not lift 15lbs for a year.

Give yourself a few months. Reduce stress. Hell, sell your house and move to the country, or whatever it takes to destress and make you happy. Preoccupy your mind. You'll be able to go back up on T, and slowly start working out again. Rest a lot, don't worry, keep your blood pressure under control but don't freak out about it, and you'll be fine eventually. Might take weeks or months, but trust it will get better. If you check your heart rate and blood pressure all the time, stop that shit. Let your doctor handle that.

Get off those benzos as soon as you can (with the help of a doctor), but don't go off cold turkey and don't do it now – that’s the opposite of what you need. Benzos will stop working one day, and you'll be at such a high dose when that happens, you'll be sorry. First, try to support your adrenals, stop panicking, have a good doctor you trust who will prescribe whatever beta blocker you might need to get through this, get this shit under control first, then work off the benzos slowly. Might take years. You’ll be fine.

With that said, I have to do the disclaimer - I'm not a doctor, and you need a doctor's opinion. Unfortunately, this is too complicated for most doctors to give a shit about.
Can I pm you to discuss further. I have been to u of m but they gave me nothing added a loop recorder acknowledged the symptoms and now I switched insurance bc the electrophysiology dept referred me to cleveland clinic. I'm tapering diazepam currently at 16mg a day. I tried propranolol but it didn't touch my heart rate....then nebivolol lowered it so much at rest I was at 30bpm way too low even with micro dose. Metoprolol was okay but I only did lowest dose and the sides were harsh. I have a doc now wanting to try a calcium channel blocker. Maybe give metoprolol another shot idk. Oh and I tried chlonodine that was pure hell I passed out 3 times cold. But to be fair I syncoped 2 times before coming off trt and trying anything. I will say all this started after a concussion and I've had a good amount of them. Last 5 years has been hell. Maybe 4.5. They want to do a fmri and brain spect scan
 

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Can I pm you to discuss further. I have been to u of m but they gave me nothing added a loop recorder acknowledged the symptoms and now I switched insurance bc the electrophysiology dept referred me to cleveland clinic. I'm tapering diazepam currently at 16mg a day
I just sent you a DM about the doctor who I saw there.
 

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ajax31

Active Member
It's well known now (perhaps not in 2007) that thiamine makes you feel worse before you feel better. It's called a "paradoxical reaction." It's recommended to take the TTFD form of thiamine, and co-factors such as magnesium (not oxide, but an absorbable form) and vitamin B complex to reduce the paradoxical reactions.

 

glob

Member
That's exactly what's happened with me . I used to take high doses for bodybuilding. After a point , i started using trt dose and that's when shit got hot.
I am off trt now and my lh and fsh have recovered with normal T and free T
I started on dexamethasone 2 week ago and I feel better.
My thyroid is fine .

But I still don't have libido.Should I give it more re time or should I jump back to trt since I am on cortisol replacement now ?
What would you suggest?
@Gianluca
hey, I know this is a bit old post but, how are you now? did you solve the problem by taking cortisone?
 

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hey, I know this is a bit old post but, how are you now? did you solve the problem by taking cortisone?
Cortisone made me worse, a lot worse. Your adrenals will heal if you let them. Liposomal vitamin C. Lots of sleep. Don't overdo it with exercising. Unless you have Addison's disease, then that's a different story.
 

glob

Member
Cortisone made me worse, a lot worse. Your adrenals will heal if you let them. Liposomal vitamin C. Lots of sleep. Don't overdo it with exercising. Unless you have Addison's disease, then that's a different story.
Why did cortisone make you feel worse? What type of cortisone you take? Hydro?
 
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My labile hypertension started the very moment I started taking cortisone. I don't know why or how, but it did. But by that point my HPA axis was already messed up and my adrenals were shot. My AM and PM cortisol were extremely low, and so we thought a little hydrocortisone would help. Nope.
 

sammmy

Well-Known Member
Cortisone is used to increase blood pressure in rare cases of low blood pressure. It does that by increasing the blood volume i.e. it draws more water in the blood circulation. Larger volume in the vascular system leads to higher blood pressure.
 

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Cortisone is used to increase blood pressure in rare cases of low blood pressure. It does that by increasing the blood volume i.e. it draws more water in the blood circulation. Larger volume in the vascular system leads to higher blood pressure.
That's interesting. I'm going to have to read about how that works. Might be a clue as to what was going wrong.
 
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