My story - almost recovered

Im 45. Started fin in my late twenties, took it for 5+ years.
The sides were mild at the time. Quit fin and started developing symptoms.
These slowly crept in year after year until they were very severe.

Symptoms at my worst, included

Severe brain fog. Adding 12 + 47 would take me several seconds of hard thinking.
Horrible memory
Extreme exercise intolerance
Severe D.O.M.S. - would get very very sore two days after exercising
Horrific endurance. Walking for 20 mins would destroy me, and would need to pass out.
Extreme fatigue
Zero energy
Insomia - would take an hour+ to fall asleep, would sleep 3 hours, and then could not fall back to sleep. So always sleep deprived.
Morning aches/pains
Zero morning wood
Zero spontanious wood
Softer erections
Morning aches/pains - zero restful sleep
Dropping T levels, but low normal.
Getting out of bed in the morning was nearly impossible. Showering was a very difficult chore to accomplish.

I saw many many doctors. Different ones every year, everyone told me I was fine, or depressed.

Finally, my T levels dropped below 200 and a GP put me on some T gel. The effect on brain fog was instant. Cleared my brain fog 80% in 24 hours and more after that. I knew right then, my body was starving for T. Ive kept a spreadsheet of all my blood work for years and upon review could see my T levels slowly inching down every year and symptoms getting worse.

The gel didnt bring my T up much so my Doc doubled it. This crashed my T levels further.
Eventually went on T injections. 100mg/week. This helped quite a bit, but still not normal.

Then after visiting stop the thyroid madness, I decided I was hypothyroid as well, and my TSH readings were complete garbage. I started to dose based on symptoms instead of blood tests. This drove my TSH down to nearly 0 but I felt a lot better, wasnt cold and achey all the time.
Had cortisol checked throughout the day, and it was very normal.

Now im on 140mgT/week and ADEX .20 every 3 days. I definitely start to develop gyno with no adex at all ( takes 2 months to build up), but feel like absolute shit if I lower my T dose.

DISCOVERIES, and HYPOTHESIS

After years of tracking my symptoms and adjusting dosages I came to a similar independent conclusion that I found Dr Crisler posting about.
People with PFS seem to have some strange immunity to testosterone replacement.
After I decided to ignore my blood tests because I was showing zero symptoms of any side effects, I slowly started raising my T dose and more benefits came. At 140mg/Week my total T is around 1500, and yet no acne, no back acne, no hairloss… nothing. The physical changes include more body hair, I had little after being on fin for so long. So I know my DHT has gone up finally. Im still no where near hairy though. It also put some muscle weight on me, but no one would suspect I was on T, im still below average weight.
I also added HCG using Dr Crislers latest protocol. 300iu(my dosage choice) on saturday and sunday and then do my T shot on monday. That closed the gap a bit more and enhanced sex drive. I get morning wood 30% of the time now, im still tuning the adex dose based on symptoms. I have finally experienced a raging morning boner after a decade of none.

Over all im about 70% recovered. I was a real bad case. If I dont exercise hard, I feel 100% recovered and can actually have above average energy and really good mental sharpness.
The remaining problem is, if I work out really hard, I crash and my symptoms come back for 3-5 days.
The interesting thing is, my hypothyroid symptoms as well as hypogonadism come back when I crash.

I dont know what fin does, but its almost like it screws up some metabolic mechanism that prevents your body from absorbing the drugs you put into it when you stress it. If I work out too hard, its like the T and thryoid meds turn off for a few days.

I plan to increase T until I get a side effect to see where my upper limit is and then back off from that.
Ive made great progress, and hope to close that final gap and get rid of my exercise intolerance completely. It would be nice to be able to work out hard more than 2x a week without crashing.

My advice to other sufferers is, do not trust blood test results at all. When you hear “you are in range”, run like the wind. Blood tests seem to mean virtually nothing with PFS. Dose based on your symptoms, and dont trust blood results.
Especially estradiol tests. They have been completely worthless and have no correlation to reality. Ive seen this in myself and ive seen people send in one sample and get it tested 3 times and have the numbers come out radically different.

Its good to be functional again. Crossing my fingers on a complete recovery in the future.

Welcome and thanks for sharing your story.

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You mean androgen resistance/insensitivity? This hypothesis is not new to us.

Many men have tried TRT with little symptomatic improvement, or often only get improvement when taken at supraphysiological dosages and even then, improvements may not last. Note the experiences here: viewtopic.php?f=4&t=3250

Interestingly, similar response/lack of response also occur in men with androgen resistance: viewtopic.php?f=5&t=1417

The fact you are having a good response to TRT is a positive sign and hopefully you will continue to sustain its effects.

Yes, im well aware of all that.
Just wanted to add another data point to the set, that I independently came to the same conclusion.

One of the things people need to try, as they run out of options, is super high doses of T. At least just to see if there is an effect.

The other major point im making is that following blood tests results and attempting to fix myself using blood tests kept me off track for many years. Gains were not made until I started ignoring blood tests, and instead doses based on carefully tracked symptoms. This is true for both T and thyroid.

ericc,
good to hear you are improving. However, does it mean you are staying on TRT and the other medications for the rest of your life?

Yes, I plan to stay on TRT for life. In my mid-40’s so not that big of deal. Lots of guys start TRT for life at this age.

In any case, I have experienced 1-2 week long periods where I have felt 100% recovered. Lots of energy. Lots of sex drive, etc.

My current theory is that I have been suffering from high estradiol, which has been masked by completely inaccurate blood tests. Im well aware of all the different types of E2 blood tests and I think they are worthless.

I start to develop gyno after 2 months of zero AI usage. I got blood tests when heavily on AI and blood tests when I was just starting to develop some gyno (small lump forming in nipple).
Guess what? My E2 blood tests all come back very low, below 5-15. (Labcorp E2 sensitive test).

At E2 = 5 I feel good. At E2 of 15 I get gyno. Crazy. I dont know what PFS has done to me but its made blood tests totally unreliable which if you follow them, keeps you sick.

Now im tuning my AI/adex dosage based on symptoms, and learning to detect low, versus high E2 via symptoms.
Im hoping this closes the gap in the rest of my recovery along with raising my T to 200mg/week.

I think you are well aware of sides of Adex. Now people are knowing Adex (or any aromatase inhibitor is not without sides.) also brings its own set of sides like joint pain, muscle wastage etc. My question is instead of suppressing some more enzyme why dont you take DHT. just switch to TRT+DHT that way your body will become more responsive to DHT and there will be less E2.
have you tried this already?

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ericc,
I am happy for you that you have found your way to handle the PFS problem. However, I don’t think it is the solution for somebody in his mid-20s to stay on TRT for life. I am over thirty now but I have refrained from TRT as it shuts down your own testosterone production and it is not without risks.
The only serious hormonal interference I have done was taking Tamoxifen and it has made me worse and I stayed worse until now. So I am afraid to further interact with hormones.

Can you briefly tell me what’s AI?

aromatase inhibitor, usually Arimidex.

Havent tried DHT cream, but it will be on my experiments list if what im doing now ends up not working out.
Well aware of all the sides for all the drugs I take. I keep a watch on them.
So far so good.

Im not too concerned though. Its a double edged sword. There are also a lot of positive side effects to some of these drugs. Low T is correlated with a lot of disease. High estradiol has issues too.
My lipid profiles improved since I started T+adex, so theres that.
I keep an extra eye on Hematocrit as I increase my T doses.

keep an eye on your cortisol levels via 24 hour urinary

when you crash from too much exercise, it is def your adrenals. you may not have full on adrenal insufficiency, but def have some sort of weakness in them. the same thing happens to most people here.

the reason you feel hypo thyroid when you crash, is because cortisol is needed in order to shuttle T3 into your cells. so you are actually right, you absolutely do go hypo when you crash!

I have experienced similar results as well.

Are you still taking thyroid medication? If so, can you tell us the details? (medicine, dose, frequency, etc)