Need libido/dysautonomia help please read entirely!

[Thegoalie39]

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 20mg my Bp went 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

 

[tropicaldaze1950]

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

How's your life? Stress? Relationship problems, work stress, financial, illness in the family? History of anxiety disorder or family history of it or other psychological/psychiatric problems? I ask all this because I have bipolar and now I'm dealing with chronic stress from caring for my wife who has Alzheimer's. Stress from morning until night. Elevated BP and intolerance to BP meds. Certainly something can appear from out of the blue to cause all your symptoms and you're left wondering what the hell happened!

Regarding TRT, estradiol(ultra sensitive test), SHBG? B12 and vitamin D levels? I only know of proviron from what I've read. IIRC, it's widely prescribed in Europe. Maybe, for some reason(s) your hormonal balance became unbalanced, thus all that you're experiencing. Regarding Xanax, years ago it was prescribed and it quickly killed my erections when I was still getting them and when my wife still enjoyed sex. Instead of being understanding, she got angry with me. That's another story.

Many on here are more knowledgeable than I am. See what they have to say.

 

[Kristoffer]

How long have you been on the Xanax?

 

[sammmy]

What are all the full symptoms of your dysautonomia, except fast hear rate?

Dysautonomia is typically due to damage of the nervous regulation of bodily functions during or after infection. Sometimes an auto-immune attack triggered by infection.

Have you had COVID or a vaccine? If yes, when did your symptoms start in relation to that?

 

[sammmy]

POTS: Causes, Symptoms, Diagnosis & Treatment

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from lying down to standing up.

my.clevelandclinic.org

 

[Gianluca]

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

Have you looked at your Aldosterone and cortisol level? How is your FT4\FT3?

 

[Thegoalie39]

How long have you been on the Xanax?

Had a doc that thought my 150mg test was too high and that was cause of my symptoms. She gave me mucuna puritans and they messed me up bad. So my doc gave me xanax up to 2mg a day in 2021. I used them never more than .25 a day 1 or 2 times a week. But this last year I tried coming off test and couldn't get below 20mg a week. So I tried to drop it again and things went crazy. For 2 months July and August 2022 a took between .5 and 1mg a day and restarted 20mg test a day. When I tried to stop I had convulsions I have a history of seizures as a kid so I got scared. Went to see a psych right away and he flipped me to valium for a slow taper. Started at 20mg slowly weaning off. My pots dysautonomia is crazy my heart jumps at least 3p bpm when standing. Beta blockers being it too low at rest even on super low doses. My bp can be sky high or low for my size it's all over the place. It's pretty scary. I have passed out twice as well cold for no reason even before using benzos

 

[Thegoalie39]

Have you looked at your Aldosterone and cortisol level? How is your FT4\FT3?

They always say thyroid is perfect. But my cortisol is either low or barely in range. Did the push test and caw response. It's so weird. Been gaining weight even with diet with such low test and exercise intolerance it's been a nightmare

 

[Thegoalie39]

What are all the full symptoms of your dysautonomia, except fast hear rate?

Dysautonomia is typically due to damage of the nervous regulation of bodily functions during or after infection. Sometimes an auto-immune attack triggered by infection.

Have you had COVID or a vaccine? If yes, when did your symptoms start in relation to that?

So I've had covid 3 times. No vaccine but this started minorly before covid began. Taking the test away has made it exponentially worse. Plus I started at 300 ng dl in my 20s perfect weight diet sleep. I also have aspergers. Ft was bare minimum. Started trt and my own super low dose proviron and I felt amazing for years. Then it's all come crashing down. Idk what to do I'm barely functioning as a person. Didn't know if anyone has expert opinion or know someone that does in this area. I saw a electrophysiology expert at u of m but he said beyond monitoring loop recorder he can't do much and should seek specialty care. Hard case bc I have both high bp and normal to low same with heart rate. Resting typical is 60's. But high end standing 130 to 150. It at least hits 100. All the xanax did was blunt my reaction to it it didn't stop anything. Not sure how to explain it

 

[Thegoalie39]

How's your life? Stress? Relationship problems, work stress, financial, illness in the family? History of anxiety disorder or family history of it or other psychological/psychiatric problems? I ask all this because I have bipolar and now I'm dealing with chronic stress from caring for my wife who has Alzheimer's. Stress from morning until night. Elevated BP and intolerance to BP meds. Certainly something can appear from out of the blue to cause all your symptoms and you're left wondering what the hell happened!

Regarding TRT, estradiol(ultra sensitive test), SHBG? B12 and vitamin D levels? I only know of proviron from what I've read. IIRC, it's widely prescribed in Europe. Maybe, for some reason(s) your hormonal balance became unbalanced, thus all that you're experiencing. Regarding Xanax, years ago it was prescribed and it quickly killed my erections when I was still getting them and when my wife still enjoyed sex. Instead of being understanding, she got angry with me. That's another story.

Many on here are more knowledgeable than I am. See what they have to say.

See that's the weird part xanax gives me erections. Not totally normal function but exact opposite effects. Other benzos don't and kill it. It's very weird. I do know I always have low progesterone but supplements made me depressed. I'm married very calm life not working currently I'm not even legally allowed to drive bc of my fainting episodes. It's a real puzzle man idk what to do. I do have aspergers but nothing else in the family.

 

[Thegoalie39]

What are all the full symptoms of your dysautonomia, except fast hear rate?

Dysautonomia is typically due to damage of the nervous regulation of bodily functions during or after infection. Sometimes an auto-immune attack triggered by infection.

Have you had COVID or a vaccine? If yes, when did your symptoms start in relation to that?

My only guess is I had a blackout playing hockey when I felt well playing Goalie got hit hard on the head. Definitely a concussion. I didn't hyperbaric oxygen therapy and I felt amazing for 3 mo ths then nothing but down hill since but they only did a basic mri and that was year after. So maybe it's from my lengthy concussion history? Was debating spect and fmri idk what to do

 

[Thegoalie39]

How's your life? Stress? Relationship problems, work stress, financial, illness in the family? History of anxiety disorder or family history of it or other psychological/psychiatric problems? I ask all this because I have bipolar and now I'm dealing with chronic stress from caring for my wife who has Alzheimer's. Stress from morning until night. Elevated BP and intolerance to BP meds. Certainly something can appear from out of the blue to cause all your symptoms and you're left wondering what the hell happened!

Regarding TRT, estradiol(ultra sensitive test), SHBG? B12 and vitamin D levels? I only know of proviron from what I've read. IIRC, it's widely prescribed in Europe. Maybe, for some reason(s) your hormonal balance became unbalanced, thus all that you're experiencing. Regarding Xanax, years ago it was prescribed and it quickly killed my erections when I was still getting them and when my wife still enjoyed sex. Instead of being understanding, she got angry with me. That's another story.

Many on here are more knowledgeable than I am. See what they have to say.

That's what my doc thought at first just anxiety but tok many oddities have been uncovered. I never had anxiety in my life quite the opposite to be honest

 

[Gianluca]

Have you looked at your Aldosterone and cortisol level? How is your FT4\FT3?

Ok, adrenal heath is the foundation of HRT, if you are low in adrenal hormones other things won’t work well. Test also the aldosterone, low aldosterone may cause racing heart as well. Low cartisol can promote higher levels of adrenaline which can cause increased heart rate at times. But some people who have low aldosterone they literally have an elevated HR since the moment they raise in the am

 

[sammmy]

You may find some useful info in the commentaries of people with POTS:

Types of POTS Syndrome: Which Do You Have? • MyHeart

There are various types of POTS. Learn about the different types of POTS and which treatments are most effective for each.

myheart.net

 

[sammmy]

Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic Intolerance

The current definition of postural orthostatic tachycardia syndrome (POTS) dates back to a small case series of patients with a subacute illness who presented with excessive orthostatic tachycardia and orthostatic intolerance, in the absence of another recognized disease. Conventional POTS...

www.onlinecjc.ca

 

[sammmy]

Medication - PoTS UK

Medication is only used after a trial of non-pharmacological (without medication) treatment such as increased fluids, salts, compression and exercise. Firstly, all medicines that worsen symptoms need to be stopped. At this moment there are no approved medicines for the treatment of PoTS and...

www.potsuk.org

 

[Thegoalie39]

Ok, adrenal heath is the foundation of HRT, if you are low in adrenal hormones other things won’t work well. Test also the aldosterone, low aldosterone may cause racing heart as well. Low cartisol can promote higher levels of adrenaline which can cause increased heart rate at times. But some people who have low aldosterone they literally have an elevated HR since the moment they raise in the am

Appreciate the reply what way would you consider raising these? I've tried progesterone and it just made me depressed and didn't raise numbers. I'm guessing raising my trt back up would be a good start. But pregnenolone gave me harsh sides. So would you consider actually taking cortisol or other items? Sorry just trying to follow

 

[Cynice49]

I have very similar symptoms, some days I’ll have a heart pounding feeling when waking up, other days about mid way thru the day my heart rate will sustain 90+ for a couple hours (resting on my watch shows 55). Heart rate when standing always bumps to atleast 100. Skin redness, anxiety etc etc and high systolic BP (I’m on telmosartan 80mg but really hasn’t helped). I’ve dropped my dose down to 10mg daily Test C and I’ve tried pregnenolone in the past (at about 100mg in the Morning) but I’ve always felt kinda bloated and a floaty feeling. I work night shift 2 days a week and wake up at normal hours the rest of the week so idk if it has to do with that possibly causing high cortisol levels.

A user states he used 400mg of preg with similar feelings of hydrocortisone but I’m scared about bp spikes like other users have experienced

 

[ajax31]

You may also want to look into vitamin B-1 (thiamine) deficiency. POTS, increased heart rate, and much more are related to low thiamine.

 

[Gianluca]

Would trt be ineffective if cortisol and aldosterone are low? Will it affect libido?
Will trt worsen dysautonamia?

low cortisol/aldosterone did not affect TRT for me. But TRT can certainly exacerbate an existing adrenal/thyroid issue, especially when supraphysiologic doses are used for long period of time.