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Akos

Low hormone levels after Accutane

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Does anyone have reduced hormones after taking Accutane?

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Look at the table. I have low DHEA-S, low testosterone (bio-T and free-T), low LH (luteinizing hormone), low estradiol, and low vitamin D (unless I take it artificially in high doses). And also I have osteoporosis (high crosslaps and osteocalcin, and also the bone densitometry shows low density of certain bones).

I took Accutane in 2013 but the first hormone tests are from 2016, when I began to experience dry eye and photophobia in a way that altered my life. In 2014-2015 I had dry eye, because I wasn’t able to use contact lenses anymore, and also I had certain symptoms once in a while, like sensation of having dust in the eye or blepharospasm, which I didn’t relate to dry eye at the moment. Only in 2016, when things got suddenly worse big time, I understood.

An endocrinologist told me to do an MRI of the hypophysis (also known as the pituitary gland) to see if the images reveal something abnormal. What do you think?

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Noticed your total T levels look pretty good despite lowish LH and FSH but I can understand why your endo would want to sent you for a pituitary MRI when you have consistently low gonadotropins. It wouldn't hurt to rule things out, but there is a very slim chance anything substantial will be revealed, as has been the case with pretty much all of the post-Accutane patients who have gone for a pituitary MRI.

Low vit D and low bone mineral density are not a surprise post-drug either.

What is a surprise is that your DHEA-S is low. Over-the-range high DHEA-S is very common among post-Accutane patients, including myself. I would guess that roughly over half of PAS patients have this. Seems to be indicative of systemic deficiencies of steroidogenic enzyme activity. Namely low 3b-HSD activity.

I had sporadic bouts of dry eye in my 20s after Accutane, but never treated it because it wasn't constant or severe, and I had much worse symptoms to worry about. If you had low DHEA and supplements were suggested, I would take them just for the sake of seeing if it helps at all. I am surprised they don't offer some type of DHEA eyedrop over the counter yet. Or even testosterone eyedrops, since androgens have a powerful influence. See more information here if you haven't yet: https://forum.propeciahelp.com/t/anti-androgen-effects-of-accutane-dhea-as-potential-treatment-for-post-drug-dry-eye-syndrome/30964/15

 

Let me ask you a few things:

Do you have fatigue, low libido or ED, muscle or joint pains, severe depression, anxiety, or loss of emotive capacity since taking Accutane?

Have you reported your side effects?

Would you be willing to take an hour to complete a post-drug survey to help characterise common post-drug symptoms after Acctuane?

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@Dubya_B

Thank you for the information and the links.

I read once that the total testosterone is not very useful in some cases, but free-T or bioavailable T are. My endo says that she looks at bioavialable T. https://www.biron.com/en/glossary/bioavailable-testosterone/

I understand that my endo would like the pituitary MRI precisely because I have consistently low gonadotropins. From Wikipedia: “In primary hypogonadism the LH and/or FSH are usually elevated, meaning the problem is in the testicles, whereas in secondary hypogonadism, both are normal or low, suggesting the problem is in the brain.”

Yeah, I also doubt they find something very abnormal in the pituitary, but who knows? If I do the MRI I will post the results. I said “very abnormal” meaning a tumor or something visible. Because, if there are small changes, in the same way that there are in the sebaceous glands, or in the meibonian gland, or in the surface of the cornea or the conjunctiva, how could they compare the current pituitary with the former pituitary? That is not possible, and that is what researchers should focus on.

So you and a lot of Accutane users have high DHEA… that’s interesting. In principle, I wouldn’t think Accutane can increase AND reduce DHEA levels. So, or your high DHEA was caused by Accutane and my low DHEA not; or my low DHEA was caused by Accutane and your high DHEA not; or neither your high DHEA nor my low DHEA were caused by the drug.

On 7/13/2019 at 12:32 PM, Dubya_B said:

I had sporadic bouts of dry eye in my 20s after Accutane, but never treated it because it wasn't constant or severe

So you had dry eye the next years after the last pill, but this issue got better over time? You don’t have dry eye anymore? That’s nice.

On 7/13/2019 at 12:32 PM, Dubya_B said:

Do you have fatigue, low libido or ED, muscle or joint pains, severe depression, anxiety, or loss of emotive capacity since taking Accutane?

Basically no.

I have lower back pain that fluctuates according to the effort or position. I never had this before Accutane. You know, I can clean the house and then have back pain for some days, or I can’t sleep on my back.

I also noticed that my ejaculations have lost power/distance, over the last years. I don’t know if this is related to my low hormonal levels, or just to my age (urologists don’t have a clear explanation).

I think it is possible that Accutane causes muscle “weakness” in the long-term, in a way that muscles are more easily strained, because of lack of lubrication or whatever. But there are other factors to consider, like lack of exercise or age, so it is difficult to determine.

The same goes to libido. I have less libido than some years ago. But I am almost forty, I have lived my life, and I usually don’t get instantly excited by looking at a lingerie ad in a magazine like when I was 15, do you know what I mean? I couldn’t say that Accutane reduce my libido, and if it did reduce it a bit, it could be impossible to determine. 

On 7/13/2019 at 12:32 PM, Dubya_B said:

Have you reported your side effects?

Not to a health institution. I could do it to my local institution, like the FDA in USA. But maybe I want to collect more information before doing it. I will as soon as I can, just to add to a hard drive some bytes, some data which probably will never be read.

On 7/13/2019 at 12:32 PM, Dubya_B said:

Would you be willing to take an hour to complete a post-drug survey to help characterise common post-drug symptoms after Acctuane?

Yes. I will look what it is about. Thanks for the link.

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On 7/15/2019 at 6:07 PM, Akos said:

So you and a lot of Accutane users have high DHEA… that’s interesting. In principle, I wouldn’t think Accutane can increase AND reduce DHEA levels. So, or your high DHEA was caused by Accutane and my low DHEA not; or my low DHEA was caused by Accutane and your high DHEA not; or neither your high DHEA nor my low DHEA were caused by the drug.

Good timing for a discussion of this. Someone linked me to a study showing elevated DHEA-S during treatment just the other day.

It is hard to say with certainty because higher DHEA-S is also associated with severe acne.

 

On 7/15/2019 at 6:07 PM, Akos said:

So you had dry eye the next years after the last pill, but this issue got better over time? You don’t have dry eye anymore? That’s nice.

Yes, basically. I rarely have dry eye in recent times. It only took 15 years for it to attenuate. This and painful muscles and joint and fatigue improved greatly also. Unfortunately, sexual and depressive symptoms worsened greatly over the last few years. You mention having a slow transition into a lower libido. Mine was noticeably reduced a couple weeks into taking the drug, (like you say, lost the ability to become aroused from lingerie ads), then it almost vanished overnight, along with ED developing a few weeks after my last dose. Scary stuff.

I think ejaculatory force and volume is under influence of T levels, so that could be the case for you.

You don't need to collect more data to report side effects. Any new symptom that develops during treatment can be considered a side effect, and it's up to regulators to determine if they are associated with the drug. It seems to be the case that, even with overwhelming evidence, they won't act.

Have you ever had SHBG checked in relation to low free T? There was a post-finasteride patient with high SHBG claim to be successfully treated with danazol. Just something to consider.

ps- Those of us with PAS are likely to have a systemic malfunction at the molecular level, so chasing hormones won't necessarily identify the problem or offer a remedy.

 

 

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What you need to do is find yourself a good applied kinesiologist Certainly, all your problems can be explained by toxic heavy metal  build-up in a dysbiotic liver and you would never know it until you paid a professional to push down on your arm. :smileys_n_people_30:

 

Seriously though, do let us know what the MRI results are.

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Posted (edited)
On 7/18/2019 at 4:26 AM, Dubya_B said:

Good timing for a discussion of this. Someone linked me to a study showing elevated DHEA-S during treatment just the other day.

It is hard to say with certainty because higher DHEA-S is also associated with severe acne.

The two links go to the same article. Did DHEA-S increase significantly in this study? Where are the results?

 

On 7/18/2019 at 4:26 AM, Dubya_B said:

Yes, basically. I rarely have dry eye in recent times. It only took 15 years for it to attenuate. This and painful muscles and joint and fatigue improved greatly also.

That’s great.

Did Accutane reduce your skin sebum production? And has the level of sebum increased again after all this 20 years?

In my case, the first year after Accutane I had like 20% of the original level of sebum. And now, five years later, it is like 30% maybe.

 

On 7/18/2019 at 4:26 AM, Dubya_B said:

Unfortunately, sexual and depressive symptoms worsened greatly over the last few years.

I think sexual issues could be a consequence of depression. If you are very depressed and you don’t find motivation to live, how do you expect to have sexual libido? There could be a sort of vicious circle, too, a psycho-physiological one.

 

On 7/18/2019 at 4:26 AM, Dubya_B said:

You mention having a slow transition into a lower libido. Mine was noticeably reduced a couple weeks into taking the drug, (like you say, lost the ability to become aroused from lingerie ads), then it almost vanished overnight, along with ED developing a few weeks after my last dose. Scary stuff.

I understand. Yes, the stuff is scary. But the problem is not the drug itself, but the way the treatment "works", by means of accumulation and basically intoxicating/poisoning the body.

What I meant by being forty and lingerie ads is that teenagers are overexcited and they find stimuli everywhere, it is a time for discovery. And when they grow old, usually they are more relaxed about sex, as there are psychological and physiological changes. This is common and natural. Just that.

And just in case, to be more clear, in a questionnaire about Accutane side effects, I wouldn’t say that the drug decreased my libido, if that is what you were asking at first.

 

On 7/18/2019 at 4:26 AM, Dubya_B said:

I think ejaculatory force and volume is under influence of T levels, so that could be the case for you.

Yes, it could be. But a couple of urologist didn’t know it, or they just looked at the total T.

 

On 7/18/2019 at 4:26 AM, Dubya_B said:

Have you ever had SHBG checked in relation to low free T? There was a post-finasteride patient with high SHBG claim to be successfully treated with danazol. Just something to consider.

Okay, I will check this SHBG. Thank you.

 

On 7/18/2019 at 4:26 AM, Dubya_B said:

ps- Those of us with PAS are likely to have a systemic malfunction at the molecular level, so chasing hormones won't necessarily identify the problem or offer a remedy.

What  exactly do you mean by “at the molecular level”?

I think that the effects of Accutane should be consider specifically. Researchers should begin with the skin sebaceous glands, to understand what is the precise effect of high concentration of isotretinoin on these glands (Is the inhibition of sebum produced by physical changes of the glands itself, by inhibiting hormones or processes that regulates these glands, or by a mixture of both things?). And then move forward (the eyes, other glands, the mucus layer of the digestive system and everywhere, and so on). Most probably, the effects on other glands/areas of the body are analogous to the effects on the sebaceous glands.

I know that PAS means Post-Accutane Syndrome, but I don’t think I have any syndrome. In the worst scenario, some tissues have changed a little, and as a consequence there are fewer secretions, like skin sebum or other internal lipids, mucosas are thinner, or hormones are less available. These little changes can have tragic effects though, like on my eyes.

And if we use the word “syndrome” for that, the fact is we don’t have the same syndrome, because we have completely different health issues (except for dry eye, that you don’t have anymore).

Edited by Akos

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Posted (edited)
On 7/20/2019 at 2:36 PM, Akos said:

The two links go to the same article. Did DHEA-S increase significantly in this study? Where are the results?

Sorry. Elevated DHEA-S in acneic patients.

Quote from the first study since the DHEA-S results aren't listed in the chart for some reason:  "Additionally, DHEA-S (p = 0.003) levels increased,"

.

On 7/20/2019 at 2:36 PM, Akos said:

Did Accutane reduce your skin sebum production? And has the level of sebum increased again after all this 20 years?

Yes. Strange thing is that it didn't have a drastic impact on sebum production until after I stopped. About 3 years after that, I had a slight increase that has held steady for the past 17 years.

.

On 7/20/2019 at 2:36 PM, Akos said:

I think sexual issues could be a consequence of depression. If you are very depressed and you don’t find motivation to live, how do you expect to have sexual libido? There could be a sort of vicious circle, too, a psycho-physiological one.

I don't think so. Loss of nocturnal and morning erections is indicative of a physiological problem. There being a vicious cycle is simply conjecture. I have had periods where the depression lifted with no improvement in sexual symptoms. Also, low fertility; although, this was only tested once on a suspicion.

.

On 7/20/2019 at 2:36 PM, Akos said:

I understand. Yes, the stuff is scary. But the problem is not the drug itself, but the way the treatment "works", by means of accumulation and basically intoxicating/poisoning the body.

I don't understand. The problem isn't the drug, but its potential cytotoxic effects during a typical treatment are? It sounds as if the drug is the problem then.

.

On 7/20/2019 at 2:36 PM, Akos said:

Yes, it could be. But a couple of urologist didn’t know it, or they just looked at the total T.

Ejaculatory force being under control of T was just an assumption on my part. I don't think there was ever a study performed. Probably nobody has a sure answer for this.

.

On 7/20/2019 at 2:36 PM, Akos said:

What  exactly do you mean by “at the molecular level”?

Meaning persistent changes in genetic regulatory elements.

.

Edited by Dubya_B

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On 7/21/2019 at 2:58 AM, Dubya_B said:

Sorry. Elevated DHEA-S in acneic patients.

Quote from the first study since the DHEA-S results aren't listed in the chart for some reason:  "Additionally, DHEA-S (p = 0.003) levels increased,"

Okay, thanks.

I don’t know what to think at the moment.

 

On 7/21/2019 at 2:58 AM, Dubya_B said:

Loss of nocturnal and morning erections is indicative of a physiological problem.

Not in my case. I have always had good libido and easy erections. But I have never had nocturnal or morning erections, without any reason. Only if I have erotic dreams, or if I think consciously when I wake up (in both cases it is about fantasizing sexually, from real or imaginary stimulus, awake or slept). As far as I remember.

My libido definitely decreased once I was very depressed, or if I am busy or worried about other things, or I am not in a stimulating context (in my case, that means for example be surrounded by women I like, whether I have “access” to them or not).

And even when I am not in a stimulating context, or I am worried or sad about other things, or when I don’t have nocturnal or morning erections, I get easy erections when the stimulus finally arrives.

So, yes, your case is very different I guess. I read about people having ED after Accutane.

But we can’t say the rule you mentioned is a general rule. Not in my case at least. Maybe the contrary is true? “Having nocturnal and morning erections is indicative that the problem is not physiological”. I haven’t studied the topic and, to be honest, I have never asked another man about his erections (not my business)

 

On 7/21/2019 at 2:58 AM, Dubya_B said:

There being a vicious cycle is simply conjecture. I have had periods where the depression lifted with no improvement in sexual symptoms.

If you think your ED was caused by Accutane:

- That doesn’t mean certain emotions or thoughts can’t influence somehow and make the problem worse (for instance, lowering your libido or your motivation to do anything).

- You don’t have to be depressed.

I am not saying it is easy. I had depression, I know what it is. And when I began with the problem in my eyes, I was desperate and then got depressed (you know, I couldn’t use the computer or watched TV normally, I didn’t know what I was going to do) . But I adapted to the problem, even if it is frustrating (and sometimes painful and disturbing), and I had to move on. I can’t be continuously regretting something of the past. Otherwise I would have dry eye AND be depressed… no way.

 

On 7/21/2019 at 2:58 AM, Dubya_B said:

Also, low fertility; although, this was only tested once on a suspicion.

I think fertility is unrelated to libido and also ED.

What did the test show you?

I think I have low motility (maybe because of varicocele, according to a doctor). And also some shape abnormalities, as far as I remember.

 

On 7/21/2019 at 2:58 AM, Dubya_B said:

I don't understand. The problem isn't the drug, but its potential cytotoxic effects during a typical treatment are? It sounds as if the drug is the problem then.

I meant:

The problem is not the drug itself but the treatment.

The problem is not a single pill, or a single molecule of isotretinoin (which the body produces naturally, or something very similar), but a high concentration of the molecule for long periods of time.

If you eat a bar of chocolate, nothing serious is going to happen. If you eat 10 kilos of chocolate every day, you’ll be ill and probably you’ll end up dying, if you persist.

And probably there are other substances apart from isotretinoin which if you take them in high but controlled concentrations, for a long period of time, they won’t kill you, but they would produce some long-term/permanent effects on your body.

Look at this person: https://www.acne.org/forums/topic/384546-accutaneisotretinoin-tolerance/

He took 10mg of Accutane for 7 years. And not only seemingly he is “okay”, but also he has built tolerance to the drug. (Of course, for anyone reading this: I don’t recommend doing what this person is doing, it could be quite unhealthy, even if he doesn’t notice anything wrong. And he has developed a phobia about his sebum that would end up damaging his organism, like some of us did)

 

On 7/21/2019 at 2:58 AM, Dubya_B said:

Ejaculatory force being under control of T was just an assumption on my part. I don't think there was ever a study performed. Probably nobody has a sure answer for this.

Once I read there is a muscle involved in that task. But I didn’t study the topic in depth. It sounds plausible though.

 

On 7/21/2019 at 2:58 AM, Dubya_B said:

Meaning persistent changes in genetic regulatory elements.

Do you mean epigenetic changes or what?

On 7/20/2019 at 12:24 PM, Dubya_B said:

Seriously though, do let us know what the MRI results are.

I think I am not going to do it for the moment. I am afraid of gadolinium

https://www.fda.gov/drugs/drug-safety-and-availability/fda-drug-safety-communication-fda-warns-gadolinium-based-contrast-agents-gbcas-are-retained-body

Maybe later, if it is indispensable.

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