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Repairing the long-term damage from Accutane

 
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(@flynn)

Posted : 03/10/2018 3:35 pm

On 3/10/2018 at 4:32 PM, mikez said:

Yes, low dose HCG (100IU) every 3 days and low dose pregnenolone (up to 20mg) daily. By 4-5/10 I meant in libido from 1/10.

Hey mike,

Thats great news.I've got a new forum dedicated to post accutane syndrome. I've got a thread dedicated to things which have helped people in anyway. It would be great if you could join up and share this info on the thread bro. Could potentially help a lot of people in the future - [removed]

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(@truejustice)

Posted : 03/11/2018 2:36 am

On 3/11/2018 at 2:35 AM, flynn said:

Hey mike,

Thats great news.I've got a new forum dedicated to post accutane syndrome. I've got a thread dedicated to things which have helped people in anyway. It would be great if you could join up and share this info on the thread bro. Could potentially help a lot of people in the future - [removed]

Great work!!

My opinion is keep it simple.....given that theres heaps of science on this forum lets avoid that on the other site.

Talk should be strictly on what condition you have and what you felt has worked to improve it, that way we avoid confusion and cut straight to what is helping as we continue to work on finding out the root causes of our issues.....this is the way I see it to be the most helpful to all, whether newly taned or burnt years ago....

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(@ihateaccutane)

Posted : 03/11/2018 5:05 am

23 hours ago, mikez said:

Yes, low dose HCG (100IU) every 3 days and low dose pregnenolone (up to 20mg) daily. By 4-5/10 I meant in libido from 1/10.

Hey mikez,
do you suffer from penile shrinkage and/or testicle shrinkage? If yes, did you recognize any change?

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37
(@umas)

Posted : 03/11/2018 6:52 am

On 9.03.2018 at 2:26 PM, TPaks said:
HA2.jpg
HA1.jpg

My hair analysis results are very similar to yours, especially the extremely high copper levels.
In one of your posts you said you pretty much fully recovered. What did you do to get better?

Also I see that you still have some gut issues and some pressure behind the eye. What helped me with that was getting a food allergy test and completely eliminating the bad ones out of my diet. A probiotic Lactobacillus Plantarum v299 was very beneficial too. The pressure is gone now and my gut is way better.

What hospital/laboratory did you sent your samples? I want to make some tests too, but I'm not sure how average laboraties are accurate?
BTW I have gut issues too and none of the probiotics helped me, even VSL#3, so count yourself lucky :D

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(@flynn)

Posted : 03/11/2018 8:09 am

On 3/11/2018 at 1:36 PM, TrueJustice said:

Great work!!

My opinion is keep it simple.....given that theres heaps of science on this forum lets avoid that on the other site.

Talk should be strictly on what condition you have and what you felt has worked to improve it, that way we avoid confusion and cut straight to what is helping as we continue to work on finding out the root causes of our issues.....this is the way I see it to be the most helpful to all, whether newly taned or burnt years ago....

Appreciate the feedback. Yes I completely agree. I think there is still space for science in sections such as Theories of PAS where we try to delve into each possible major theory. The problem here is that articles get posted without much explanation and its impossible to have a lengthy, focussed discussion on topic.

I have included a section for people to report what has helped them and which symptoms these are. As you say, this helps to get a better idea of how effective/ineffective different things are. I also think we should need to start trialling things as a community to get more numbers.

If you have any other feedback about the forum please let me know.

On 3/11/2018 at 4:05 PM, IhateAccutane said:

Hey mikez,
do you suffer from penile shrinkage and/or testicle shrinkage? If yes, did you recognize any change?

Have you experienced penile and/or testicle shrinkage? I literally just put a question out related to what I think is the most plausible/likely cause of majority of mental side effects of post accutane syndrome (PAS) such as sexual dysfunction,depression, depersonalisation etc. If you could leave a comment describing in detail, it would be very useful.

I have a suspicion Accutane also effects the 5 alpha reductase type 2 to a less extent than 5 alpha reductase type 1 which may help to explain penile shrinkage/testicle shrinkage. That or your levels of Leutinising hormone are too low.

- [removed]

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(@flynn)

Posted : 03/11/2018 9:16 am

Hello guys,

Could people confirm what their follicle stimulating hormone (FSH) levels are if they have had this tested??? Also Luteinising hormone (LH) if they have it.

I think I've found something which may be pretty significant here.

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(@guitarman01)

Posted : 03/11/2018 10:03 am

1 hour ago, flynn said:

Could people confirm what their follicle stimulating hormone (FSH) levels are if they have had this tested??? Also Luteinising hormone (LH) if they have it.

I think I've found something which may be pretty significant here.

Maybe its best to go ahead and mention any possible significance for people to be aware of. Including those that haven't had this tested yet or to be aware of some blood markers that might change in the future.
Nice job on the forum. I think the end game will be to have all this information compiled and collected.

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(@guitarman01)

Posted : 03/11/2018 10:28 am

On 3/9/2018 at 1:58 PM, flynn said:

I think its crazy that post Accutane people don't have a dedicated forum for Post Accutane Syndrome (PAS). All of the information is scattered throughout the internet on different forums rather than in one place. Additionally, though forums like this are great and worthwhile. The layout and lack of organisation makes content hard to find/read and makes real in depth discussion on specific topics difficult, as the thread is constantly interrupted by contrasting/unrelated/irrelevant posts.

I think its real simple. People that are serious about this treat it as a part time job. You take a couple minutes every night to look through the posts or post what you feel might be relevant information yourself.
In that regard this is could be considered a news feed for all things Accutane.
Every day I come on here I want new information. I want to keep things moving.

"the thread is constantly interrupted by contrasting/unrelated/irrelevant posts."
This isn't up to the individual to decide in my opinion.
Everyone has their own thoughts or is sort of doing their own thing on here.
Which is fine as long as it doesn't become abusive.
Everyone though should be allowed to have their thoughts cross-checked because there have been some ideas out there that might do alot more harm than good.
Some of this has been generated from forums like this, thats why im real careful about recommending any self treatment.
It's also why you can't avoid the science @TrueJustice

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(@flynn)

Posted : 03/11/2018 11:02 am

28 minutes ago, guitarman01 said:
I think its real simple. People that are serious about this treat it as a part time job. You take a couple minutes every night to look through the posts or post what you feel might be relevant information yourself.
In that regard this is could be considered a news feed for all things Accutane.
Every day I come on here I want new information. I want to keep things moving.

"the thread is constantly interrupted by contrasting/unrelated/irrelevant posts."
This isn't up to the individual to decide in my opinion.
Everyone has their own thoughts or is sort of doing their own thing on here.
Which is fine as long as it doesn't become abusive.
Everyone though should be allowed to have their thoughts cross-checked because there have been some ideas out there that might do alot more harm than good.
Some of this has been generated from forums like this, thats why im real careful about recommending any self treatment.
It's also why you can't avoid the science @TrueJustice

Completely agree, viewing it as a news feed makes a lot of sense, thats why I still think this thread is still really important.

My point about the thread being interrupted isn't to say that what most people post isn't important or significant. It's just that without it being organised in one place. There may have been a discussion on a certain topic on a random page like 237 for example, that a newcomer could have made a significant contribution to, with their knowledge, experience or findings. But because they can't go through the whole thread, they never see the discussion and so never share their info or learn from the discussion themselves.

You definitely can't avoid the science, but you do sometimes need to summarise a study or main findings/significance as most people won't or can't read scientific papers.

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(@ihateaccutane)

Posted : 03/11/2018 11:35 am

3 hours ago, flynn said:
Appreciate the feedback. Yes I completely agree. I think there is still space for science in sections such as Theories of PAS where we try to delve into each possible major theory. The problem here is that articles get posted without much explanation and its impossible to have a lengthy, focussed discussion on topic.

I have included a section for people to report what has helped them and which symptoms these are. As you say, this helps to get a better idea of how effective/ineffective different things are. I also think we should need to start trialling things as a community to get more numbers.

If you have any other feedback about the forum please let me know.
Have you experienced penile and/or testicle shrinkage? I literally just put a question out related to what I think is the most plausible/likely cause of majority of mental side effects of post accutane syndrome (PAS) such as sexual dysfunction,depression, depersonalisation etc. If you could leave a comment describing in detail, it would be very useful.

I have a suspicion Accutane also effects the 5 alpha reductase type 2 to a less extent than 5 alpha reductase type 1 which may help to explain penile shrinkage/testicle shrinkage. That or your levels of Leutinising hormone are too low.

- http://pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-dht-very-plausible-likely.9/

Yes shrinkage is what happened to me. It is wrinkled and dead. Think about having just ejaculated and this is how it is for me forever. If you have just ejaculated, your penis is dead, no connection between brain and penis. And of course low/no libido. That is what it is. Besides that, my penis does not look alive. It is so embarrasing but it has shrunken and most of the time so small like it is very cold. Yes my testicles are also shrunken too.
Even squezing or touching the top of my penis used to be a enjoyable thing. Stretching was enough to have an erection. Now it is not. My orgasms are dull (most of the time). No need to say of course that I dont have libido. It is zero.
Before accutane I was a healthy and horny guy. I still can not believe that this happened to me. But adaptation is what I have to do and what I am doing.

2 hours ago, flynn said:

Hello guys,

Could people confirm what their follicle stimulating hormone (FSH) levels are if they have had this tested??? Also Luteinising hormone (LH) if they have it.

I think I've found something which may be pretty significant here.

I have tested my LH many times, it is in between ranges and actually right in the middle. But my FSH is a little bit low.

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(@mikez)

Posted : 03/11/2018 12:11 pm

7 hours ago, IhateAccutane said:
Hey mikez,
do you suffer from penile shrinkage and/or testicle shrinkage? If yes, did you recognize any change?

I don't suffer from this that badly, but I have lack of sensation in the testicles, ie they don't 'fire up' or tingle like they used to and feel kind of flat/not full. This tends to go away IF im on something that enhances my libido a lot , so it is reversible.

I've tried maybe 30+ agents since 2009. Besides the low dose HCG and pregnenolone (dosages in previous post), which got me to about 4-5/10 in libido , I've forgotten something. Sinimet (Levodopa with Carbidopa) 200mg/day was tried a few years ago. Complete restoration of libido, mood elevation , increased appetite and muscle hardness. Its prescription only, so youd need an open minded Dr , and note everyone's brain chemistry is different. This may not be for you.

You can try L tyrosine plus Mucuna Pruriens, both over the counter, the latter containing about ~10% L-dopa naturally. I tried these with zero effect.

Unfortunately, Sinimet made it harder for me to sleep both times I tried it, leading to discontinuation, however I'm prone to insomnia. I still may reinstate it.

I'm also going to try MACA (must be heated - look for the gelatinized powder, not raw) to help with libido, as this has proof in studies to restore SSRI induced anorgasma etc. Effective dose used was 3g/day.

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(@flynn)

Posted : 03/11/2018 2:01 pm

On 3/11/2018 at 10:35 PM, IhateAccutane said:

Yes shrinkage is what happened to me. It is wrinkled and dead. Think about having just ejaculated and this is how it is for me forever. If you have just ejaculated, your penis is dead, no connection between brain and penis. And of course low/no libido. That is what it is. Besides that, my penis does not look alive. It is so embarrasing but it has shrunken and most of the time so small like it is very cold. Yes my testicles are also shrunken too.
Even squezing or touching the top of my penis used to be a enjoyable thing. Stretching was enough to have an erection. Now it is not. My orgasms are dull (most of the time). No need to say of course that I dont have libido. It is zero.
Before accutane I was a healthy and horny guy. I still can not believe that this happened to me. But adaptation is what I have to do and what I am doing.
I have tested my LH many times, it is in between ranges and actually right in the middle. But my FSH is a little bit low.

Ok thanks for replying. That is very useful to know. again it would be helpful if you could post your experience/story somewhere on the forum (as a record) - [removed]

Is it possible that some of the shrunk penis is a result of having far less erections throughout the day and masterbating less due to low libido caused by accutane? Like you don't mean your full erect dick has gotten smaller do you? you just mean its generally smaller/shrunken when flaccid. I have found this myself but believe its just related to low blood flow. Normal guys are always having erections/masterbating so their dick has a lot more blood flow etc. leading to it seeming/being generally fuller throughout the day/in general.

I believe the low FSH which PAS people seem to have, may be a very important clue which I made a connection with today. I will post about this below.

On 3/11/2018 at 11:11 PM, mikez said:

I don't suffer from this that badly, but I have lack of sensation in the testicles, ie they don't 'fire up' or tingle like they used to and feel kind of flat/not full. This tends to go away IF im on something that enhances my libido a lot , so it is reversible.

I've tried maybe 30+ agents since 2009. Besides the low dose HCG and pregnenolone (dosages in previous post), which got me to about 4-5/10 in libido , I've forgotten something. Sinimet (Levodopa with Carbidopa) 200mg/day was tried a few years ago. Complete restoration of libido, mood elevation , increased appetite and muscle hardness. Its prescription only, so youd need an open minded Dr , and note everyone's brain chemistry is different. This may not be for you.

You can try L tyrosine plus Mucuna Pruriens, both over the counter, the latter containing about ~10% L-dopa naturally. I tried these with zero effect.

Unfortunately, Sinimet made it harder for me to sleep both times I tried it, leading to discontinuation, however I'm prone to insomnia. I still may reinstate it.

I'm also going to try MACA (must be heated - look for the gelatinized powder, not raw) to help with libido, as this has proof in studies to restore SSRI induced anorgasma etc. Effective dose used was 3g/day.

Thanks for the informative post, this is great info. How would you describe the severity of your sexual dysfunction/symptoms? what is it? Like significantly lowered libido, arousal, interest in sex because of Accutane?

Sinimet completely restored libido??? Are you sure of this? If so, that is pretty remarkable!

If you could, there is a thread for things which have haven't helped. If you could post there it would be great or can I put this onto the forum for you? - [removed]

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(@flynn)

Posted : 03/11/2018 2:33 pm

On 3/9/2018 at 9:30 AM, Dubya_B said:

Also, Accutane has little effect on circulating DHT levels, BUT a profound effect on peripheral 5ar activity. This is true of studies of skin biopsies taken after treatment and one study of type-1 5ar in the prostate during treatment.

There's reason to believe the negative effects of Accutane on 5ar-I observed in skin biopsies extend to the brain and central nervous system as seen in PFS. It's a shame that animal studies have not been performed on this point yet, but I would feel bad for any animal who was turned into a creature like me.

Sorry for the long post

Hi guys, I found a study today which I think is very significant. I have written more in depth on my main thread about the 5AR theory of PAS here (please check and let me know if anything is incorrect or needs to be changed) - [removed]

People have always wondered if Accutanes effect on 5AR occurs in places other than the skin, particularly if it has an effect in the brain and whether these effects persist beyond treatment in any kind of significant way.

Look at this paper - https://www.ncbi.nlm.nih.gov/pubmed/1388045

Essentially, it shows that 5AR converts progesterone into a more potent version (5 alpha-dihydroprogesterone or 5 alpha-DHP) in the brain. This 5 alpha-DHP is then thought to induce the release of gonadotropins LH and FSH by the pituitary.

In the study they found that when they blocked 5AR over a sustained period of time, it resulted in a significant inhibition of progesterone induced Follicle Stimulating Hormone (FSH) but not Luteinising Hormone (LH). This indicates that when 5AR activity/expression is reduced in the brain, you will get a low release of FSH but not LH.

Of all the blood tests that PAS people seem to get, what hormone consistently comes back as low? Its FSH whereas LH tends to be normal (it was for me). Of all my hormone tests, excluding DHEA-S. It was only FSH that seemed unusually low for a male of my age.

Whats the significance of this? This is one of the strongest pieces of evidence I've come across to suggest that there is a sustained reduction in 5AR activity or expression at the level of the brain in PAS people (my blood test was taken 10 years post accutane).

This also explains why people report low semen volume or watery ejaculate (FSH stimulates spermatogenesis).

I'm fairly confident now, that accutanes effect on 5AR expression is the cause of the majority of mental side effects associated with post accutane syndrome and especially the SEXUAL DYSFUNCTION!

It would be incredibly useful for anyone with blood test results particularly FSH and LH to post them on this page, so we have a record of them. Additionally, if you want to contribute to communal research, it may be worth getting these two hormones checked. If we can gather enough blood results, and there is a strong correlation, it provides a powerful piece of evidence and information for the community and a chance at curing this thing. Let's see how common low FSH and low FSH in relation to LH really is amongst post accutane people - [removed]

If this is the case, what can be done? Long term, I think a very plausible cure for PAS and PFS, would be the use of the new CRISPR-CAS9 gene editing system to selectively up-regulate expression of the 5AR1 and/or 5AR2 genes in the brain. This could theoretically be achieved.

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(@truejustice)

Posted : 03/11/2018 4:09 pm

Amazing to me how so many of us have done full hormone panel tests from around the world no doubt lead by endocrinologists who should know their stuff and yet were still left guessing what is going on post tane, dont these specialists know what to do??

Im almost of the opinion that unless something sinister is going on ( say cancer or something ) they dont want to know about it, either that or that just dont know what to do, that goes for all specialist in many fields - endocrinologist or Gastroenterologists, name your specialist- they just dont know what to do!!

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(@frage)

Posted : 03/11/2018 6:39 pm

4 hours ago, flynn said:

If this is the case, what can be done? Long term, I think a very plausible cure for PAS and PFS, would be the use of the new CRISPR-CAS9 gene editing system to selectively up-regulate expression of the 5AR1 and/or 5AR2 genes in the brain. This could theoretically be achieved.

I'm concerned that the only way we would be able to get such treatment in a timely manner is if we did it ourselves. And not only the time factor, but companies currently charge hundreds of thousands of dollars for crispr treatments. I'm desperate enough, but I'm not all that confident in my abilities. Then again I haven't done shit in 3 weeks, just wallowing in hopeless depression. And I have heard its relatively easy, whatever that means. What could go wrong? Give myself cancer? Don't even know if I view that as a bad thing anymore. Bump

Edit: We also still need more information about what genes to target based on a bit more exact thoughts on what enzymes/androgens/receptors are not functioning correctly.

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(@truejustice)

Posted : 03/11/2018 9:41 pm

Or you could fast and hope that that resets everything!!

we need to remind ourselves from time to time that some have have claimed to be out of this mess.

# Fasting
# Iodine supplementing
# Liver/Gallbladder cleanses

Have these not worked for others cause we gave up on them?? I did 5 of the liver cleanses, was I just 2 more away from full recovery....dont know....

What other success recovery theories have I missed?

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(@guitarman01)

Posted : 03/11/2018 11:31 pm

@flynnGood possible connection here.
https://www.ncbi.nlm.nih.gov/pubmed/1388045
"There was, however, a specific, significant inhibition of progesterone-induced FSH but not LH release when the 5 alpha-reductase inhibition was sustained throughout the afternoon of the gonadotropin surge."

Surge vs regulatory process.
People that have dabbled in 5ar inhibitors seem to report a Surge followed by a depletion.
Maybe Until nothing is left or becomes less and less.
Hence cycling that many have tried and ultimately failed.
A "Surge" of Acne when starting Accutane.
This could be a bacterial surge and/or surge of hormones.
Except I never felt a hormonal effect back then when having this surge of acne.

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(@mikez)

Posted : 03/12/2018 1:39 am

On 3/12/2018 at 1:33 AM, flynn said:

Sorry for the long post

Hi guys, I found a study today which I think is very significant. I have written more in depth on my main thread about the 5AR theory of PAS here (please check and let me know if anything is incorrect or needs to be changed) - [removed]

People have always wondered if Accutanes effect on 5AR occurs in places other than the skin, particularly if it has an effect in the brain and whether these effects persist beyond treatment in any kind of significant way.

Look at this paper - https://www.ncbi.nlm.nih.gov/pubmed/1388045

Essentially, it shows that 5AR converts progesterone into a more potent version (5 alpha-dihydroprogesterone or 5 alpha-DHP) in the brain. This 5 alpha-DHP is then thought to induce the release of gonadotropins LH and FSH by the pituitary.

In the study they found that when they blocked 5AR over a sustained period of time, it resulted in a significant inhibition of progesterone induced Follicle Stimulating Hormone (FSH) but not Luteinising Hormone (LH). This indicates that when 5AR activity/expression is reduced in the brain, you will get a low release of FSH but not LH.

Of all the blood tests that PAS people seem to get, what hormone consistently comes back as low? Its FSH whereas LH tends to be normal (it was for me). Of all my hormone tests, excluding DHEA-S. It was only FSH that seemed unusually low for a male of my age.

Whats the significance of this? This is one of the strongest pieces of evidence I've come across to suggest that there is a sustained reduction in 5AR activity or expression at the level of the brain in PAS people (my blood test was taken 10 years post accutane).

This also explains why people report low semen volume or watery ejaculate (FSH stimulates spermatogenesis).

I'm fairly confident now, that accutanes effect on 5AR expression is the cause of the majority of mental side effects associated with post accutane syndrome and especially the SEXUAL DYSFUNCTION!

It would be incredibly useful for anyone with blood test results particularly FSH and LH to post them on this page, so we have a record of them. Additionally, if you want to contribute to communal research, it may be worth getting these two hormones checked. If we can gather enough blood results, and there is a strong correlation, it provides a powerful piece of evidence and information for the community and a chance at curing this thing. Let's see how common low FSH and low FSH in relation to LH really is amongst post accutane people - [removed]

If this is the case, what can be done? Long term, I think a very plausible cure for PAS and PFS, would be the use of the new CRISPR-CAS9 gene editing system to selectively up-regulate expression of the 5AR1 and/or 5AR2 genes in the brain. This could theoretically be achieved.

 

Excellent info, but we need to be careful not to jump to conclusions too fast.

- The study was performed on ovariectomized rats.

- The study did not use accutane

- Accutane has only been shown in literature to reduce skin DHT levels and not circulatory, as far as I can find looking at previous studies.

- Accutane affects a host of other pituitary hormones. ( https://www.ncbi.nlm.nih.gov/pubmed/21103844 , https://www.ncbi.nlm.nih.gov/pubmed/25721216 , anyone of which could cause symptoms.

- We don't have even close to a large enough sample size to say most users who experienced sexual side effects from accutane have low FSH, AND this is the only disturbance.
For instance, someone a few posts ago was sure we all had high DHEA-S, whereas I have low DHEA-S and low FSH.

- That said, if you have diagnosed secondary hypogonadism and low FSH, low dose Clomid may be appropriate as it also increases FSH. Or perhaps, if your T is normal but FSH is low , and you can show youre infertile, then a Dr may jump on board and treat just your low FSH.

This is still very interesting though given I have had bottom of the range FSH for many years, consistently. We just need to gather more hormone panels for PAS to see if this is a pattern.

 

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(@mikez)

Posted : 03/12/2018 2:20 am

13 hours ago, flynn said:
Thanks for the informative post, this is great info. How would you describe the severity of your sexual dysfunction/symptoms? what is it? Like significantly lowered libido, arousal, interest in sex because of Accutane?

Sinimet completely restored libido??? Are you sure of this? If so, that is pretty remarkable!

If you could, there is a thread for things which have haven't helped. If you could post there it would be great or can I put this onto the forum for you? -  http://www.pasforum.info/threads/things-which-have-helped.5/

No problem at all.   You can post any of my posts on that forum... free to copy and of my posts on that forum :)    I just have too many pages open these days to add another myself.  

My sexual dysfunction is about 0.5-1 /10 in terms of libido satisfaction (when untreated).  On HCG it got to 4/10 , which is quite an improvement for something with no felt side effects.  

Sinimet was tried twice with the same result.   Note that I was also on SSRIs , so my brain chemistry may be quite a bit different, and thus my results.  However,  I was on them 8 years before accutane, without libido issues, so my sides are not due to the SSRI , IMO.    

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(@flynn)

Posted : 03/12/2018 7:11 am

On 3/12/2018 at 12:39 PM, mikez said:

Excellent info, but we need to be careful not to jump to conclusions too fast.

- The study was performed on ovariectomized rats.

- The study did not use accutane

- Accutane has only been shown in literature to reduce skin DHT levels and not circulatory, as far as I can find looking at previous studies.

- Accutane affects a host of other pituitary hormones. ( https://www.ncbi.nlm.nih.gov/pubmed/21103844 , https://www.ncbi.nlm.nih.gov/pubmed/25721216 , anyone of which could cause symptoms.

- We don't have even close to a large enough sample size to say most users who experienced sexual side effects from accutane have low FSH, AND this is the only disturbance.
For instance, someone a few posts ago was sure we all had high DHEA-S, whereas I have low DHEA-S and low FSH.

- That said, if you have diagnosed secondary hypogonadism and low FSH, low dose Clomid may be appropriate as it also increases FSH. Or perhaps, if your T is normal but FSH is low , and you can show youre infertile, then a Dr may jump on board and treat just your low FSH.

This is still very interesting though given I have had bottom of the range FSH for many years, consistently. We just need to gather more hormone panels for PAS to see if this is a pattern.

Yes I completely agree mate, its never good to jump to conclusions too fast but this could be quite a significant clue to this puzzle (if like you say, its correct and relevant).

You raised some great points, sorry for long posts but though it was worth going into them:
- Findings in rats are often highly translatable to humans because they have similar genetic, biological and behaviour characteristics. So its very probable that if this process occurs in rats it also occurs in humans.

-I think they are ovariectomized to control for Estrogen (insignificant).

- Using Accutane is irrelevant. The point is that this study shows a link between a suspected cause of long term Accutane side effects (persistent downregulation of 5AR gene expression/5AR activity) and a possible biomarker hormone (FSH) to give us a clue if 5AR activity has been impaired in the brain. Essentially, if FSH is low and LH is fairly normal. This indicates that 5AR activity in the brain has been reduced/altered as its only 5AR activity in the brain not the skin etc. which would have an effect on the ratio of FSH/LH release.

- You're right about DHT levels and lowered 5AR activity in the skin but have they ever tested 5AR activity in the brain from accutane?There can be normal circulatory levels but completely deficient levels in the brain tissue as is the case with the skin tissue. If skin levels can be affected so dramatically, whycan't brain levels. I can't find info anywhere. I don't mean to keep shilling my forum, but I have a post outlining all of this, explaining the 5AR theory of PAS (with evidence) if you care to read - [removed]

- It does affect other pituitary hormones, but I don't believe they remain affected years after treatment. Also I actually don't think they could cause these effects. This level of sexual dysfunction/problems strongly indicates this problem relates specifically to androgens, the strong types of androgens involved in libido like DHT or neurosteroids (which required 5AR). Hormones such as Growth hormones, IGF-1 don't have any where near as overriding effect on sexual function as hormones such as DHT. Also I've tested my growth hormone and IGF-1, IGF-BP3, they were normal.

- Again you're right about sample size (only going off what I've noticed on forums), thats why people need to start posting blood results in one specific place. If you post yours on here, I could post them for you on blood tests area - [removed]

- Yeah DHEA-S is one which has been high, but likely just a coincidence. The special thing about FSH and LH. Is if 5AR is altered there is likely to be a different ratio of FSH to LH. Where FSH is low but LH is fairly normal. This makes it a very useful to test to investigate as it cancels out natural variations between people and is relative to each person.

- It's true you could supplement to fix FSH but that won't fix the main underlying problem. If the theory is correct. If you manage to fix 5AR. It will fix all these other downstream problems like FSH etc.

Appreciate the feedback bro!!!

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MemberMember
75
(@colinboko)

Posted : 03/12/2018 10:11 am

On 3/12/2018 at 6:11 PM, flynn said:

Yes I completely agree mate, its never good to jump to conclusions too fast but this could be quite a significant clue to this puzzle (if like you say, its correct and relevant).

You raised some great points, sorry for long posts but though it was worth going into them:
- Findings in rats are often highly translatable to humans because they have similar genetic, biological and behaviour characteristics. So its very probable that if this process occurs in rats it also occurs in humans.

-I think they are ovariectomized to control for Estrogen (insignificant).

- Using Accutane is irrelevant. The point is that this study shows a link between a suspected cause of long term Accutane side effects (persistent downregulation of 5AR gene expression/5AR activity) and a possible biomarker hormone (FSH) to give us a clue if 5AR activity has been impaired in the brain. Essentially, if FSH is low and LH is fairly normal. This indicates that 5AR activity in the brain has been reduced/altered as its only 5AR activity in the brain not the skin etc. which would have an effect on the ratio of FSH/LH release.

- You're right about DHT levels and lowered 5AR activity in the skin but have they ever tested 5AR activity in the brain from accutane?There can be normal circulatory levels but completely deficient levels in the brain tissue as is the case with the skin tissue. If skin levels can be affected so dramatically, whycan't brain levels. I can't find info anywhere. I don't mean to keep shilling my forum, but I have a post outlining all of this, explaining the 5AR theory of PAS (with evidence) if you care to read - [removed]

- It does affect other pituitary hormones, but I don't believe they remain affected years after treatment. Also I actually don't think they could cause these effects. This level of sexual dysfunction/problems strongly indicates this problem relates specifically to androgens, the strong types of androgens involved in libido like DHT or neurosteroids (which required 5AR). Hormones such as Growth hormones, IGF-1 don't have any where near as overriding effect on sexual function as hormones such as DHT. Also I've tested my growth hormone and IGF-1, IGF-BP3, they were normal.

- Again you're right about sample size (only going off what I've noticed on forums), thats why people need to start posting blood results in one specific place. If you post yours on here, I could post them for you on blood tests area - http://www.pasforum.info/threads/blood-tests.6/#post-46

- Yeah DHEA-S is one which has been high, but likely just a coincidence. The special thing about FSH and LH. Is if 5AR is altered there is likely to be a different ratio of FSH to LH. Where FSH is low but LH is fairly normal. This makes it a very useful to test to investigate as it cancels out natural variations between people and is relative to each person.

- It's true you could supplement to fix FSH but that won't fix the main underlying problem. If the theory is correct. If you manage to fix 5AR. It will fix all these other downstream problems like FSH etc.

Appreciate the feedback bro!!!

Lol so how does one fix 5AR ? Isnt this the mystery for all PAS and PFS...?

Quote
MemberMember
75
(@colinboko)

Posted : 03/12/2018 12:24 pm

Okay results just got in.... now I™m confused 

Wtf could this mean?

0A725CB3-BAF2-4885-9CEC-D5C990BD6BA2.jpeg

Quote
MemberMember
24
(@flynn)

Posted : 03/12/2018 12:44 pm

On 3/12/2018 at 9:11 PM, Colinboko said:
On 3/12/2018 at 6:11 PM, flynn said:
Yes I completely agree mate, its never good to jump to conclusions too fast but this could be quite a significant clue to this puzzle (if like you say, its correct and relevant).

You raised some great points, sorry for long posts but though it was worth going into them:
- Findings in rats are often highly translatable to humans because they have similar genetic, biological and behaviour characteristics. So its very probable that if this process occurs in rats it also occurs in humans. 

- I think they are ovariectomized to control for Estrogen (insignificant).

- Using Accutane is irrelevant. The point is that this study shows a link between a suspected cause of long term Accutane side effects (persistent downregulation of 5AR gene expression/5AR activity) and a possible biomarker hormone (FSH) to give us a clue if 5AR activity has been impaired in the brain. Essentially, if FSH is low and LH is fairly normal. This indicates that 5AR activity in the brain has been reduced/altered as its only 5AR activity in the brain not the skin etc. which would have an effect on the ratio of FSH/LH release.

- You're right about DHT levels and lowered 5AR activity in the skin but have they ever tested 5AR activity in the brain from accutane? There can be normal circulatory levels but completely deficient levels in the brain tissue as is the case with the skin tissue. If skin levels can be affected so dramatically, why can't brain levels. I can't find info anywhere. I don't mean to keep shilling my forum, but I have a post outlining all of this, explaining the 5AR theory of PAS (with evidence) if you care to read - [removed]

- It does affect other pituitary hormones, but I don't believe they remain affected years after treatment. Also I actually don't think they could cause these effects. This level of sexual dysfunction/problems strongly indicates this problem relates specifically to androgens, the strong types of androgens involved in libido like DHT or neurosteroids (which required 5AR). Hormones such as Growth hormones, IGF-1 don't have any where near as overriding effect on sexual function as hormones such as DHT. Also I've tested my growth hormone and IGF-1, IGF-BP3, they were normal.

- Again you're right about sample size (only going off what I've noticed on forums), thats why people need to start posting blood results in one specific place. If you post yours on here, I could post them for you on blood tests area - [removed]

- Yeah DHEA-S is one which has been high, but likely just a coincidence. The special thing about FSH and LH. Is if 5AR is altered there is likely to be a different ratio of FSH to LH. Where FSH is low but LH is fairly normal. This makes it a very useful to test to investigate as it cancels out natural variations between people and is relative to each person.

- It's true you could supplement to fix FSH but that won't fix the main underlying problem. If the theory is correct. If you manage to fix 5AR. It will fix all these other downstream problems like FSH etc.

Appreciate the feedback bro!!!

Lol so how does one fix 5AR ? Isn™t this the mystery for all PAS and PFS...? 

Yes thats the difficult part. As I said before, I imagine it will be a form of gene therapy. With systems like CRISPR you can target specific genes to up regulate them. Obviously hard part is delivering the system to the correct part of the brain etc. But the possibility exists. Even if you couldn't get the therapy passed or funded for conditions like PAS or PFS which you should given the number of suicides etc. Then you could even develop it for congenital 5AR deficiency as tis a hard rare disorder with few/no treatments (always ideal candidates for gene therapy. 

On 3/12/2018 at 11:24 PM, Colinboko said:

Okay results just got in.... now I™m confused 

Wtf could this mean?

0A725CB3-BAF2-4885-9CEC-D5C990BD6BA2.jpeg

Haha, this high DHEA-S result keeps coming up. What are your exact symptoms if you don't mind me asking and what supplementation were you taking at the time of blood test?

Quote
MemberMember
75
(@colinboko)

Posted : 03/12/2018 12:53 pm

7 minutes ago, flynn said:
Yes thats the difficult part. As I said before, I imagine it will be a form of gene therapy. With systems like CRISPR you can target specific genes to up regulate them. Obviously hard part is delivering the system to the correct part of the brain etc. But the possibility exists. Even if you couldn't get the therapy passed or funded for conditions like PAS or PFS which you should given the number of suicides etc. Then you could even develop it for congenital 5AR deficiency as tis a hard rare disorder with few/no treatments (always ideal candidates for gene therapy.
Haha, this high DHEA-S result keeps coming up. What are your exact symptoms if you don't mind me asking and what supplementation were you taking at the time of blood test?

Havent been taking a thing! What do my high FSH and (slightly high) LH mean??

Quote
MemberMember
24
(@flynn)

Posted : 03/12/2018 1:04 pm

On 3/12/2018 at 11:53 PM, Colinboko said:
On 3/12/2018 at 11:44 PM, flynn said:
Yes thats the difficult part. As I said before, I imagine it will be a form of gene therapy. With systems like CRISPR you can target specific genes to up regulate them. Obviously hard part is delivering the system to the correct part of the brain etc. But the possibility exists. Even if you couldn't get the therapy passed or funded for conditions like PAS or PFS which you should given the number of suicides etc. Then you could even develop it for congenital 5AR deficiency as tis a hard rare disorder with few/no treatments (always ideal candidates for gene therapy.
Haha, this high DHEA-S result keeps coming up. What are your exact symptoms if you don't mind me asking and what supplementation were you taking at the time of blood test?

Havent been taking a thing! What do my high FSH and (slightly high) LH mean??

Would be useful to know your main symptoms, do you even have sexual dysfunction from Accutane?.

I'm no doctor so take everything I say with a pinch of salt (I could be completely wrong).

- High DHEA-S fits the profile
- Normal/high LH is normal/healthy
- High FSH is unusual (doesn't fit with my theory - so either theory is wrong or you are an anomaly).

There could be any number of reasons for high FSH, you may just naturally produce more FSH then most people. But I would advise maybe getting it checked out.

One possibility (really don't mean or want to scare you here) - Normal Testosterone, normal LH and high FSH can indicate spermatogenic failure. You should look into semen analysis. Again though, this could just be a complete random level. Which indicates nothing.

Could you or I post the results on forum with blood test so we can start to analyse all the blood tests? - [removed]

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