Androgen receptors upregulation

[norgefluid (imported)]

Hello,

For almost 10 years I was on dutasteride, for hair loss issues. Because of that my libido was completely destroyed, but I kept my hair for a while. After 8 years hair started to fall again, so I tried to find other drugs... I found Cyproterone (July 2017) and tried without stopping Dutasteride and add estradiol 4mg, and the nightmare begun.

My hair loss increased a lot, itchy scalp started, lost 70% of my hair on the top and around the ears, I had (and still have) pain in the eyes, headaches, pain in the pelvis, bladder and hips. And my libido came back, from time to time (when libido comes back, pain is worse).

My prolactin was a bit high, my doc thought I had prolactinoma, MRI came clean. I stopped Cyproterone, April 2018, testosterone raised up and pain was awful. I was able to convince my therapist to prescribe me Lupron (July 2018). It helped for a while. But the pain came back in a vengeance. I stopped Dutasteride (December 2018).

The pain is becoming unbearable and I don't know what to do anymore. Doctors are clueless. And an idea came to my mind. if all of this was because of my androgen receptors becoming overexpressed. Like men with prostate cancer resistant to anti-androgens. My PSA was very low (September 2018). But because I have pain in the pelvic area + bladder + itchy scalp (and eyes?) ... I think it's related to androgens.

I met 5 endocrinologists and 1 urologist ... they just laughed at me. It was very stressful, because I'm in pain, and I don't know what to do. I must say I have transgender issues, and I cannot accept the idea of giving up and let testosterone coming back. But it's like no matter what I do testosterone is the strongest. My testosterone is in castration ranges (around 20-25 ng/dl, my estrogen is high (200 to 300pg/mL) ... and yet I'm getting more body hair, less scalp hair, more muscles .................................................. ...

I'm really lost at this point. It's like Post Finasteride Syndrome but in the opposite side. Maybe PFS is oversensitive androgen receptors but because of normal testosterone levels androgen receptors just shut down and stop to "accept" testosterone. It's one of my theory, sorry if it doesn't make sense.

So ... What I'm experiencing doesn't seem to be common, but maybe someone can tell me if it happened to someone else, and what the "cure" ? Or, there is no cure ?

My head is hurting like hell right now, same with my eyes, scalp, and pelvic. I did a lot of exams, and saw few specialists. I'm really afraid because I know something bad could happen because of my issue. I'm afraid to stop everything, because the last time was hell and because I really need to be feminine.

If you going to tell me I'm crazy, everything's going on is in my head, please don't. I want ideas, hypothesis, solutions, ...

Thank you for reading.

PS : sorry for my poor english.

[GordonGG (imported)]

I don't have a clue. But wanted to say that I wish you all the best in your search for answers.

[Brycenosak (imported)]

Hi there, I am sorry you are having such a bad time. Pain levels are very hard to quantify. I too was disbelieved by doctors. I had to ask to be castrated to resolve my pain issues. It did work, though they were doubtful. It took over 4 years for it to be finally done. I am no help to you, not knowing much about all the meds you are on. It seems your body is fighting the anti andro? There are plenty of contributors who know alot about this sort of thing. You need to be patient as it may take a little while for the right person to pick up your post. All the best and keep in touch. There is a solution. Brycee

[norgefluid (imported)]

Thank you for your replies.

@Brycenosak : Is my body fighting anti-andro ? In a way yes. But the anti-androgen works, I mean it lowers my testosterone to castrate levels. But my body find a way to be more sensitive to a very low androgen levels, l

ike men with prostate cancer resistant to anti-androgen.

I'm sure it's the exact same mechanism here. But is there any solution for that ? I really hope there is at least one, something I can get easily of course...

[mattman59 (imported)]

norgefluid, have you had an orchiectomy? If not it sounds like you really need one badly. It seems like you are very sensitive to anti-androgens so castration would really solve that issue. Also you said you really need to be feminine. Well you also might need to take estrogen or even have a sex change operation. Just take it one step at a time. Talk to your regular physician. He or she knows you better than any other doctor. They should be able to refer you to the best specialist whether an endocrinologist, urologist. or psychiatrist. There is help available out there. You just need to find the right path to it. Good luck.

[norgefluid (imported)]

My testosterone level is under castration levels. So after physical castration I could have more testosterone than today because of the adrenal production. I don't think it's the issue here. But thank your for suggesting something.

It's all about Androgen Receptors Upregulation. And nothing else. It's not about testosterone production and its derivative like dihydrotestosterone.

I also use estradiol injection (valerate or enanthate), at very high dose. And it's not working at all (except I have the boobs, my face is not more feminine than before). Last time my estrogen level was 300pg/mL - and it was before I started injections).

I had no luck with urologist or endocrinologist. They are useless ... at least in France. They wanted me to take 1mg estradiol or max 2mg (estrofem) + 100-200mg Cyproterone - for life!!!. It's bullshit. My psychiatrist gave me Lupron + Estreva (6 pumps a day). I get injection from internet.

My physician is useless too. He suggested me to stop everything. I did and it was a nightmare. My testosterone came back, and the pain (eyes, head, scalp, pelvis, skin, ...) was unbearable.

There is no help for me with regular doctors or specialists. I saw a lot of them, and they were dumbs or dangerous (200mg Cyproterone .... lol - even if I tried because I was curious).

I'm looking for a way to cure or counteract the Androgen Receptor Upregulation. I think there is no cure, but maybe someone here knows something I don't know about this issue.

[erikboy (imported)]

Perhaps you should contact some scientists who find your case interesting for them. So they are willing to deal with your unusual phenomena. Go to some university with medical faculty or something. People who teach there are partly scientists as well.

[Frida G Cavic (imported)]

maybe it´s nervous. psychosomatic. my leves are 19ng /dL testosterone and 43pg/ml Estradiol. The doctor wants put me under 5/ngDl of testosterone and increase my estradiol. Many gals says that testrogens give you menstrual syndrome, and I agree, I suffer from cholitis nervosa. The impotant thing here It´s that you go to a doctor who knows about transgender treatment, even if you don´t consider yourself a transgender. The reason is that the endocrynologyst experienced with transgenders, knows how the " male body" reacts with estrogens. I was many years without a doctor and 3 months ago I found one.

[norgefluid (imported)]

@erikboy : I live in a noman's land but I contacted some endocrinolgists from University indeed (Paris, Lille, Montpellier, and in the US) and they replied shit (to try bicalutamide - I did - ; to give up (I did for some time) ; or others ideas not really relevant ; or just that they cannot help me because they have no clue). Almost every month I contact endocrinologists but it's like there is not solution.

@Frida G Cavic : I will ignore your message. Because after 2 years of losing my hair + itchy scalp/eyes/skin + headaches + more libido + more hair I cannot stand that kind of comments, the same I got from doctors because they are plain idiots. Bye, just ignore me. Thank you.