Symptoms starting several years after stopping usage?

I’ll start by asking generally, if it is possible (or probable) that symptoms start 3-4+ years after completely stopping Propecia/Accutane? Is there anyone who has an experience like that? I would assume it is rare, and even if it does happen, people are unlikely to link symptoms to something they took years before. And I have not seen any people on this site with this kind of experience. So I am curious.

I am curious because that is basically what has happened to me. To give some details about my situation, I took Accutane for a year or so around 2011-2012 and had no symptoms (except a little dry skin) during that time and not for another 4-5 years. It was around 2016 when I started having symptoms. At that time, my libido started to fluctuate between high and low (basically feeling fine with high libido half the time and then the opposite, almost dead libido the other half). It stayed that way until April 2019 where it has since just stayed low. I don’t really have any other noticeable symptoms.

The reason I suspect it is the Accutane is because I have literally not done anything since 2016 or even before that that could reasonably explain my symptoms. No other medication and a healthy diet, sleep and exercise. I have taken some supplements for a couple of years but nothing of note. Multivitamin, vitamin D, C, L-Citrulline and Magnesium. All in modest doses. I probably started taking these in 2017.

Obviously my symptoms could be a result of something much simpler, like a hormonal deficiency, and that is more likely to explain my symptoms. But I can’t help but suspect that Accutane is to blame. And obviously, PFS and PAS are mysterious conditions so I don’t expect any direct answers. I guess I am just trying to start a discussion and see if anyone has any similar experiences.

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Which supplements? carefully check them if there was saw palmetto in them.

I think it´s very possible for sure. If the genetic changes have been made it can be a matter of time before they become a problem. Those things can worsen with time.

I had only low semen volume when i quit Accutane at the day two, 5 years ago. Last winter i got many other symptoms. But it is still not similar to yours. You should have used something to trigger your problem. Don’t you have any other symptoms? It must be psychological man. Don’t obsess.

I am pretty sure that none of the supplements I take have any saw palmetto or similar in them. They are all from reputable brands. I always make sure to do research before trying a new supplement.

I will say, and I can’t believe I forgot to mention this, I did start taking Psyllium Husk powder 2 weeks or so before I “permanently” lost my libido in April 2019. And I kept taking it until July when I stopped. But Psyllium Husk cannot possibly cause symptoms right? It is literally just a source of dietary fibre. I took a modest dose from a reputable brand too. Things didn’t improve when I stopped taking it either. Do you guys think it could have triggered something and if so, how?

I have taken plenty of psyllium husk. Did not seem to worsen symptoms or trigger new ones for me.

Could you post the contents of your multivitamin? Do you use any fancy shampoos? Do you use any medicinal creams like antifungals?

I use T-Gel Shampoo and an Argan Oil conditioner, but I started using these in June or so this year, so well after symptoms started. Before I was simply using a basic Head and Shoulders shampoo and no conditioner. That is clearly not the cause of my symptoms either, seeing how I had been using that shampoo since like I was 15. My multivitamin really doesn’t contain anything of note, just vitamin A, D, E, B, C, zinc, copper, iodine, selenium, calcium and magnesium. And all around the daily recommended value.

Another supplement I forgot to mention is Jarrow’s KSM-66 Ashwaganda. I used that for like a year from May 2018 to June 2019. I started taking that to treat my mild anxiety. It didn’t have any noticeable symptoms or effects, so I stopped taking it in June. Didn’t feel any different afterwards. I forgot to mention it before because I hadn’t seen it mentioned as a negative when it comes to libido. But from further research I have seen some anecdotes with people getting lower libido from it. But that seems very rare. Regardless, seeing how it didn’t affect my libido at all from May 2018 to April 2019 (like mentioned, my libido was consistently fluctuating between high and low from 2016 to April 2019) I doubt that Ashwaganda suddenly cause my libido to drop in April.

Anyway, at this point I have listed everything I have taken that could have had any effect on my libido. I can’t think of anything else. Given all this, do you guys think it is an effect from Accutane that I took 7-8 years ago or something else? Again, I haven’t measured my hormones yet, I have an appointment with a doctor in a couple weeks, so we will see.

Roaccutane has libido loss and erectile dysfunction in the official side effects list. Anecdotally, we have seen site users who never made the connection between their libido loss and their Accutane use until years later.

I would urge caution with vitamin A and zinc. Personally I have found I got worse after brief multi-vitamin use, with Vitamin A in there. Zinc is a 5-AR inhibitor - so it risks adding more of the thing that created the problem in the first place.

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Could you make us a big favour and complete our survey, by the way? The bar graph icon in the top right will take you there!
Thank you,

I would love to take the survey but I keep getting an error page. Anyway, do you mean that we have seen anecdotes about site users who have had effects since taking Accutane but didn’t make the connection until years later, or do you mean that there have been users who started getting effects several years later? Because again, I struggled to find such stories. But would love to see if others have such experiences to see if there are similarities to my situation.

And I understand that vitamin A can be problematic in large amounts but my multi only contains 50% of the daily recommended value so I doubt that will cause any issues. The zinc content is the daily recommended value. From what I understand though, zinc as a 5-AR inhibitor is arguable and getting sufficient zinc is essential for testosterone production anyway. So I doubt my multi is problematic.

I’m talking about the former, the chap in the linked video is one example:

I’ll see if we can get any help for your situation about the error page.

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Please can you post up what error message you are getting? You are clicking on the bar chart at the top of the page, right?

I tried again today and did not get an error now so I just finished the survey.

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Nice one @Username2525

It happened to me, I took propecia in 2006, and my symptoms appear years later for example weak erections in 2008 and sleep problems also, morning glucose levels elevated to a prediabetes, in 2012 full crash that last until 2015, with depression, anxiety, total lack of libido and impotence, a real nightmare, suicide thought.

Did the full crash happen suddenly? And was there anything else possibly that triggered it? Also, did things improve after 2015? Are things better now? If so, have you done anything specific?

As I said, symptoms appear years later, the big crash happened in 2012, flat line until to 2015, in 2016 thing started to get better, I am feeling fully recovered recently. Look for my post on the forum.

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