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Welcome to our community @Andy
I’m so sorry that you were given this grossly inaccurate information and that it has come at such cost to yourself.
Thank you for signing up and telling your story. From here, I’d advise you to have a read of the following thread and follow some of the actions outlined therein
Of particular importance is taking the Post-Drug Syndrome Survey. Your participation will contribute to an ever growing data set which is finally painting the full picture of what is happening to patients at the clinical level.
Thank you! The drug regulators can’t seem to figure this one out.
Thanks. Already did the survey as soon as I signed-up.
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I took Propecia for hair loss which was CAUSED BY Accutane! I have had these syndromes ever since, which was 1997/1998.
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Hi Andy, I am so sorry for your journey and results you have now. I want to to know you have a lot of support here. You are not alone. That for me was life changing. You will find a lot of similar stories but a lot of stories of recovery as well. I urge you not to experiment with supplements and medications. These can lead to worsening of symptoms and syndrome .
For myself, I do so much better on low carb/ keto diet and daily cardio exercise. Keeping stress low helps. There is light at the end of the tunnel
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I can tell you with confidence that CBD is not the cure
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I mean regular weed is a mixture of CBD and thc and I’ve smoked a lot of it
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I don’t think it would hurt, might help with anxiety or pain. Everyone reacts differently though
I’d advise caution
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I had a negative experience with RSO/Cannabis Oil titrated up to a maximum of 1/2 gram per day of high THC and CBD strains over 3 months.
If you don’t like the feeling you get from smoking cannabis, this isn’t fun, and the effect lasted more than 12 hours at the higher doses. I also had heart palpitations that lasted for a few months after the bad trip was over.
If anything, my libido and function was left worse than before I began taking it. Another lesson learned chasing mysterious recovery stories.
I’ve also tried high CBD strains, containing almost no THC, and it only served to make me groggy.
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All DIY, but you should be able to find it in a dispensary in this day and age if you want to. No doubt cannabinoids have their medical uses, but I don’t believe it’s at all reliable for PFS/PAS.
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Sorry to hear your situation. It seems it takes a lot of us a long time to make the connection between Accutane use and persistent libido loss - this is because it’s not on the side-effects list, other times it is because the extremity of the problem is too much to handle, so there is a kind of self-denial.
You are right that there is basically no treatment for people in our situation. Our only way out is first understand what happened to us, then we can look for a treatment.
Folks, I’ll summarize my background first and then list all the tests I’ve done and list all the things I’ve already tried.
Background:
At age 31, 2015, Took Accutane 40mg for 3 months and had immediate sexual side effects. I just didn’t connect them to Accutane and thought maybe I’m aging? I saw Urologist in NYC and he gave me Cialis. Which worked fantastically well. Even a Cialis 5mg would keep me strong for 3 days! I was also found to be low Testosterone (around 200ng/dl) but doctor did NOT put me on TRT at this point.
Meanwhile, other symptoms started to show up (insomnia, bad skin, always looking tired/sleepy eventhough I wasn’t tired, brain fog etc). Then saw doctor again and was diagnosed with Low Testosterone, Low Thyroid, High Cholestrol and Pre-Diabetes. I’ve always been healthy, skinny, athletic guy with generally clean diet. So, I was surprised I had high cholestrol or pre-diabetes.
Anyway, was put on Levothyroxine (for hypothyroid), Crestor (to lower cholestrol) and metaformin (to control blood sugar). And also this time on Testosterone Replacement Therapy (TRT). I saw Dr. Crisler (he passed away) and he started my TRT protocol. After he passed away, I moved to Defy Medical (under Dr. Caleb Calkins )
Over next year, kept trying to dial-in TRT protocol and even numbers were all right, nothing seem to have helped.
My Total T was around 1000ng/dl, DHT and Free T above high-normal range. And E2 around 20-25 pg/ml. So everything on point but still I’d need Cialis.
2018/2019 - I had hair transplant and took Minoxidil + Finasteride topical mixture solution. Took it for 4 weeks and now even Cialis stopped working . Even 6x my Cialis dose (from 5mg to 30mg, even 40mg a few times) barely works. I’m able to get hard with high-dose of Cialis but not feel any pleasure, nor orgasm or feel pleasure during orgasm. In fact, I get bored before I can orgasm and now I avoid physical intimacy altogether. There is little no sensation in my penis during sex (with or without condom) and it is difficult to even hold semi-erection for duration of sex.
I’ve also stopped TRT because TRT has not been able to resolve my sexual dysfunctional issues.
Tests done:
- Penile Doppler - nothing wrong
- Artery thickness - normal, no blockage
- Brain MRI - no tumor found in pitutary, all good
- Blood work (Testosterone, E2, Free T, Total T, DHT, Prolactin, SHBG, CBC, Hematocrit, TSH, T4, T3, FT4, FT3, Lipid panel for Cholestrol, A1c, Fasting Blood sugar etc) - all on point.
-> Without TRT , my Testosterone is low (200-ish ng/dl) and naturally low SHBG but even with TRT, nothing changes.
-> Without levothyroxine my TSH is around 6 but with Levo, TSH is around 0.1 and T4/T3/FT4/FT3 all in upper half of the normal range.
-> With Crestor 20mg , cholestrol is maintained well in optimum range
-> With Metaformin : fasting blood sugar at 99
I also exercise and eat relatively clean.
I don’t drink or smoke.
Things I’ve tried:
1. Testosterone Replacement Therapy (TRT).
(Testosterone + HCG + Anastrazole/Aromasin)
Duration: 1 year+
Protocol:
Testosterone Cypionate 80mg twice a week (160mg total)
HCG 400 IU twice a week
Aromasin 12.5mg twice a week (or 0.1mg of anstrazol twice a week)
- It kept my overall T above 1000ng/dl
- Free T, above high-end of normal range
- DHT - above high-end of normal range
- Estradiol e2 around 24 pg/ml
Result : no help in fixing ED/Libido/Sensitivity issues. Slight increase in muscle mass.
2. Human Growth Hormone (HGH)
Why? thought HGH can help repair whatever might be wrong
Duration: 6 weeks
Protocol: 4 IU daily of prescribed, pharma HGH
(I was traveling to a developing country and was able to get a doctor to prescribe it)
Result: nothing
3. Neurotransmitters L-Dopa, L-Tyrosine etc:
Duration 4 weeks
Result: nothing
4. Various Supplements and Herbs:
Why? various supplements known for boosting libidos etc
Horny Goat Weed
Tribulus
Result: nothing
5. Anavar (Oxandrolone)
Why? Theory was it is a DHT derivative so maybe it’d help if I put some DHT derivative in to my body.
Dose: 40mg
Duration: 4 weeks
Result: nothing for ED/Libido. But I exercise regularly (weight lifting) and I eat generally healthy diet. Dont drink alcohol or smoke. And I noticed increased strength and muscle tone.
6. Shockwave Therapy (GainsWave)
They put a low-intensity shockwave emitting device on your penis and blast it for 20-30 minutes. Supposedly clears up blockages, if any.
Duration: 7 sessions, one per week (normally, even 3 sessions are enough to see noticable results but I kept going because I hoped it’d fix me)
Results: nothing, no change, just out of money ($400/session, $2800 total)
Question is what to try next? 
I read about high-dose Proviorn
-> But I tried TRT and Anavar already. Anavar is a DHT derivative so it should be same as Proviorn.
Read about Ella and RU 486: You take 5mg a day for few days (upto a week) and that’s it.
But not sure how/why it’d work. Has it worked for anyone else?
Read about BHB + Butyrate from @MOONCHILD
(10g of BHB powder + 2 pills of Calcium Butyrate for one week on/one week off) for a few cycles.
Read about l-arginine and l-carnitine (6000mg a day of each)
Read about Rick Simpson Oil (High THC content, low CBD content, extracted from Indica strain of weed/marijauna).
But the dose is so high (1 gram a day for 90 days). I’ve never even smoked before so it’d be difficult for me to consume such high amount of marijauna concentrate oil and still hold on to my job!
Does anyone have a list of protocols that have worked for some people? I’m deciding on what to try next.
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