I went through a period like this a few years before I crashed
Yeah, me too. It was a few years of this actually. I think it started while I was still on fin… and continued for 3 years while off and then boom! CRASH. After I had been around 2.5 years OFF fin I had basic blood test done and it showed a testosterone level above the “normal” limits. After the crash I was very near to the low normal limit.
My situation has just gotten worse. Relentless scalp pain/burning/itching, it doesn’t stop not even for 5 minutes. The only escape is when I’m asleep, and it often takes me a long time to fall asleep. I was supposed to be traveling the world with my best friend in November, that’s been called off now. I’ve been to every possible doctor and they’re all useless.
One tried me in a trycyclic anti depressant, which can reduce pain/itching, which has now given me gynecomastia, even though I only took it for two weeks. So I’ve got that to deal with now. I’m losing everything, lost my girlfriend and most of my friends, my body and hair are fucked up, losing touch with reality because of how relentless this is, losing my mind because this doesn’t allow me to think or feel anything else. I don’t socialize, go out or do anything anymore, I spend half my life on the internet searching for something, anything that can treat this. Like I’m sure you guys do, every day, probably every 5 minutes, I fantasize about my life if I hadn’t taken Propecia. I didn’t even need to take it, I had a few millimeters of receded hairline. I read Merck’s studies about 2% side effects, which went away when stopping the drug, and thought I had nothing to lose by trying it. Now I know I’ll be battling this chronic pain, burning and itching for the rest of my life. This may not be the same as PFS but I know what it’s like having something so seemingl harmless take your happy life away from you.
Dench57 please contact me ASAP. I have some ideas for you. Thanks.
update?
You might hold the key to PFS. Contact the foundation!
I think you should try one or two days of fasting. so no eating at all and look how you feel those day.
Hi Dench57,
Sorry to hear you’re having a bad time of it. I did have a brief period of symptoms like yours when finasteride first left my system so I know how uncomfortable the scalp itching can be.
I strongly recommend that you speak to your GP urgently and insist on blood tests. If, heaven forbid, you have a crash at the end of this period of hyerandrogenity, you don’t want to be left guessing at how your hormones have changed like the rest of us on here.
Other members will be able to tell you what the most useful indicators are but my experience with NHS GP’s is that you’ll struggle to persuade them to do much more than testosterone, LH, FSH, cortisol and liver function. If you could persuade them to test for E2 and DHT they’d also be extremely useful.
Arm yourself with as much info as possible before speaking to them because doctors are generally sceptical/unaware of the problems finasteride can cause. If you do manage to get bloods done please do make a note of your results and post them on here as they could prove extremely useful to the rest of us too.
All the best.
Friend you hold the cure.
Please join this forum and thread. We are talking about hyperandrogenic
you need to go to the studies
they should study you because you seem to have stopped where others just passed by
I had painful scalp itching before i started finasteride. Nizoral shampoo helped, but I had to use it daily. I also used to hold ice bags on my head. Finasteride stopped the itching totally.
Did you ever get the blood testing you mentioned above? Can you share the results so we can compare it to what many of us are seeing and we can see what we share and where you may be different as that may hold the key to your recovery.
Hey guys i would like to know how is going for you?? I knoe Dench57 has declared that it was not even RH that he was experiencing but what about others? i quit propecia 2 weeks ago, but symptoms are still with me. Anyone has ever recovered from RH ? Anyone knows any post about someone recovering from it? because i have never came across
Same here … and I tried everything …
Finasteride, Dutasteride, Spironolactone, Bicalutamide, Cyproterone, Enantone … and I’m still losing my hair and have itchy scalp. Since I started anti-androgens itchy scalp is insane, I have eyes pain, pain in my joints, legs, arms, penis, pelvis, …
I stopped AA and pain was unbearable, but after 5 months pain decreased (still here 6/10 instead of 8/10). So I go back to AA (because of hair loss, and because I’m MTF …).
10 years on Dutasteride my libido was dead. I stopped for 2 years, still nothing. My testosterone was high.
When I started Spironolactone (100 then 200) my libido came back in a vengeance, same with others AA … and very agressive hair loss started too.
My theory is androgen receptors upregulate when no so much testosterone (and DHT ?) … but when you increase testosterone by a lot (supraphysiological testosterone - with supplements or tamoxifen or hcg or something else) I’m sure androgen receptors get damaged or degrade or are underexpressed (that’s why some guys have FPS). I can’t prove my theory.
Maybe some guys should try to lower their testosterone levels by taking low dose of anti-androgens (2-5-10 mg cyproterone - 50 mg Spironolactone).
Or if you want to stop hair loss or ichy scalp maybe increase testosterone level. BTW I would like to be able to do that … but because of transgender issues I cannot. I’m trying to convince myself to stop AA and take tamoxifen to increase my testosterone … it’s really hard.
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Mine did the samething I never shed before but generic fin caused my hair to fall everywhere…Then after stopping when dht returns it gets way worse, fast…What ever you do don’t take it again I made the mistake of taking propecia the secnd time hoping to stop the shedding and it did but the side effects were so bad I had to stop and then instead of getting the massive shed a few months later I got pfs and my body has gone completly haywire and my health and looks have been wrecked…
Hi Xorack!
So you’re saying that yourself, and others with androgenic alopecia, who experienced libido loss that continued after stopping 5-ar inhibitors, had a return of strong libido when taking spironoloactone?
.
A plausible theory currently under investigation is that androgen receptors are upregulated/overexpressed in the presence of normal or high androgen levels because of some unknown factor that reduces androgen signalling.
i.e.: AR levels are increased to compensate for a lack of normal sensitivity to normal androgen levels. The lack of sensitivity may also be causing symptoms of low androgens in various tissues in PFS patients.
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@Dubya_B : I’m saying maybe some guys should try to lower their testosterone level. If they tried everything else with no success at all. I don’t know. That’s what happened to me, but I know it’s not the cure, of course not.
I really think the opposite of what you’re saying … I’m on Enanton … and my libido is back, my body hair is growing. When my testosterone was normal (but a bit high) : no libido at all, no hair loss, no body hair, …
My experience is just my experience, and maybe there is something else wrong with me.
EDIT : something interesting : Restoring androgen sensitivity with epigenetic modulators
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What you say is a common experience.
My libido and mood was much better with Total Testosterone in the 350-550ng/dl range than in the 650-850 range.
There are plenty of guys with PFS who say they feel better with lower T levels or, at least temporarily, when taking anti-androgenic drugs. Some have even mentioned feeling better from taking 'relins like Enanton.
I think this lends credence to AR overexpression being part of the problem. Grossly increased AR combined with increased androgen levels leads to a reduction of the effect somehow.
A better explanation can be found here: Excerpt From Varility Paradox Cause of PFS
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It’s not so common experience because when I told doctors about it … it was like I was crazy. Same in hairloss forums. It’s a very rare condition, because not a lot of guys try to lower their levels of androgen like I did (and still doing actually). I received my last labo tests. My testosterone : 0,19 ng/mL. DHT : 0, 05 ng/mL. Low as never and hair loss is dramatic (itchy scalp too).
But thank you obviously I’m not the only one … I don’t know if the solution is to stay for years on AA, maybe my androgen receptors will shut down and let estrogen do the job … or to give up and increase my testosterone level : it means PFS, no libido at all, penis numbness, tired all the time, …
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Sorry. What I meant to say is that it is a common experience specific to some PFS patients to feel better with low testosterone levels.
I have never heard of anything like this outside of PFS and PAS. Also, PAS patients generally state they feel nothing from increasing T levels with a few rare exceptions who feel better or worse.
My take from reading HRT and bodybuilding forums is that normal guys tend to experience increased libido and mood with increasing T levels, at least during the initial spike after dosing before E2 excess comes into play.
Doctors will always think we are crazy until there is acknowledgement of these syndromes. It’s a shame.
I don’t know what to tell you about going on TRT to prevent the hairloss and itchy scalp. It won’t help in my opinion and may make PFS symptoms worse, as you fear.
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Holyhead - Same exact story as you and Dench57 where I initially had thick hair and probably should have never been on fin to start, but unfortunately took it for 7 month before quitting resulting after horrible shedding for the whole time i was on it. It’s been 10 months since quitting now and the shedding hasn’t stopped. Believe it or not, I’m contemplating getting back on it before seeing your post. Wondering if you reduced the dosage the second time on it?
I had some psychological. side effects: incresed anxiety, a couple panic attacks and overall feeling of depression, but not sure if it’s from the drug or losing my hair, either way I wanted to hear your thinking and the details of the out come the second time around if you don’t mind. it’d be greatly appreciated.
If it helps, currently, i feel okay mentally. Not the same person i was before the drug but that’s mostly due to an extreme debilitating feeling of regret and disappointment that I didn’t reserach the drug more before starting.