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Repairing the long-term damage from Accutane

 
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8
(@benjamin94)

Posted : 06/17/2018 3:56 pm

21 hours ago, TrueJustice said:
We cant sue for things like:

thinning hair
dry skin
fatigue
eye floaters
sebum loss
excess sweating
unwanted body hair
lack of bile flow
depression
loss of quality of life

I could go on....

They know about us, make no mistake about it, are they interested in helping even in the slightest? Not to my knowledge- helping would be an admission of guilt anyway!

Unless they had a hand in putting the 8 tips video together.....Im curious on the background with that video, like how did they come to believe the combination of those supplements actually work? - whos actually had success doing it, things like that....

Have you ever considered that these things might not be due to Roaccutane?

Do you know how the MMR vaccine got linked to Autism?

Answer: The symptoms of autism first become apparent at around the age of 1-2. Which is the same age as the MMR vaccine is given. This is how people concluded that the MMR vaccine was giving children autism. We know now that this almost cerrtainly isnt true.

People generally take Roaccutane between 16-21. Depression usually starts after 16. Depression is phenomenally rare in children. 16-21 is particularly a high risk age for depression. Similarly you are a young man. Thinning head hair and unwanted body hair is something that will again begin after 16 and is part of being male.

I would advise you to start treating these conditions in conventional ways, rather than reading crackpot theories (which almost certainly arnt true) and implementing their drastic interventions to no avail.

Reflect on this. Have any of these theories youve read on the internet ever properly worked or have they just given you false hope?

Im really not trying to be nasty. Im trying to help you. Please think about what ive said.

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1804
(@truejustice)

Posted : 06/17/2018 5:51 pm

Mate - we should sue them for eye floaters and thinning hair alone!! - undoubtably occurred while taking Accutane and certainly not presented to me as something Id have to endure 20 years later!!

Sorry, thats all Ill say - dont wish to derail current subject matter!!

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10
(@jason3)

Posted : 06/17/2018 8:59 pm

4 hours ago, Benjamin94 said:
I would advise you to start treating these conditions in conventional ways, rather than reading crackpot theories (which almost certainly arnt true) and implementing their drastic interventions to no avail.

It has been a long weekend with little sleep so I am feeling a little salty, but here goes:

This is what needs to be done. It's what I did to recover my well-being from my own symptoms. The simple truth is that no one is riding in to rescue anyone suffering from symptoms. WE have to take agency over OUR own health. That applies to ALL areas of your health. There are so many theories - I like to call it "broscience". Learn how your body works. It takes a lot of reading, but really isn't difficult and it is so worth it.

I watched about half of that 8 tips video. You know, if you try those things and they work for you then great. But learn on your own why they work, don't rely on a YouTube expert. It's sensationalist to me. That guy is saying that Accutane gives you Cholestasis for God's sake. If you really had that, it's a life-threatening condition, and you would know it. My wife had it while pregnant. She was bed-ridden in a hospital for 3 weeks while they tried to keep her liver from failing and her from dying. And she itched all over day and night without relief. It's just spreading fear and misinformation casually mentioning something like that in a video and sharing it around. Hypervitaminosis A. You would know it. It comes on fast and then goes away within weeks of the Vitamin A source being removed. Hallucinations, double vision, bone swelling, vomiting. If you suspect it with those symptoms, then get your liver and Retinol tested along with some bone x-rays. It's irresponsible to just tell people that Accutane causes it and by the way here is a tip to deal with it. And I stopped watching after he said a bunch of this Accutane gets stored in your fat. Your body can store substances in fat if the liver is overwhelmed, but the research on this and how it works is incomplete at best. 80-90% of retinoic acid is stored in your liver. It's why the drug is so toxic to your liver. Again, you have to confirm with tests showing stress on your liver. Don't just assume that you have half or whatever of your Accutane treatment locked up in fat cells for a lifetime, because you don't.

There are a lot of theories about Accutane's effects, but they are likely to stay just that - theories - because in order for there to be some real progress made there have to be studies and documentation that this is all linked together and real. And the sad fact is that Roche certainly isn't going to prove that they made some kind of poison. And there isn't any money in other researchers doing the work either. Try what you can, but learn about it first from several sources so you don't inadvertently make something worse. And test, test, test - it's the only way you can be sure. Before, during, after trying something.

You have to treat the symptoms and problems as they are for you. It's no longer Accutane, it's what Accutane caused, so the "Accutane angle" just isn't going to help much at this point. Especially those of us who are years or decades out from it. If you have ED, IBS, hypogonadism, you have to treat those things. Learn all you can so that you can have an informed conversation with your doctor. And it your doctor doesn't care or won't listen then fire your doctor and get another just like you would with a plumber or mechanic.

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7
(@akos)

Posted : 06/17/2018 10:10 pm

On 6/14/2018 at 9:15 AM, marshl1 said:

Quite ironically, I am now totally convinced that acne is the result of the over-accumulation of VA in the sebaceous glands in the first place.

How an over-accumulation of vitamin A could be the cause of acne and prevent acne (Accutane)? Arent those two affirmations contradictory?

On 6/14/2018 at 9:15 AM, marshl1 said:

I don't think I had specifically stated that RA can be stored in the liver for a long period of time. But, it definitely persists in the skin lipids for long periods of time.

I suppose a blood test measures the quantity of VA in the blood? But is there a way to measure VA/RA in the skin lipids?

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10
(@marshl1)

Posted : 06/18/2018 4:03 am

6 hours ago, Jason3 said:
It has been a long weekend with little sleep so I am feeling a little salty, but here goes:

This is what needs to be done. It's what I did to recover my well-being from my own symptoms. The simple truth is that no one is riding in to rescue anyone suffering from symptoms. WE have to take agency over OUR own health. That applies to ALL areas of your health. There are so many theories - I like to call it "broscience". Learn how your body works. It takes a lot of reading, but really isn't difficult and it is so worth it.

I watched about half of that 8 tips video. You know, if you try those things and they work for you then great. But learn on your own why they work, don't rely on a YouTube expert. It's sensationalist to me. That guy is saying that Accutane gives you Cholestasis for God's sake. If you really had that, it's a life-threatening condition, and you would know it. My wife had it while pregnant. She was bed-ridden in a hospital for 3 weeks while they tried to keep her liver from failing and her from dying. And she itched all over day and night without relief. It's just spreading fear and misinformation casually mentioning something like that in a video and sharing it around. Hypervitaminosis A. You would know it. It comes on fast and then goes away within weeks of the Vitamin A source being removed. Hallucinations, double vision, bone swelling, vomiting. If you suspect it with those symptoms, then get your liver and Retinol tested along with some bone x-rays. It's irresponsible to just tell people that Accutane causes it and by the way here is a tip to deal with it. And I stopped watching after he said a bunch of this Accutane gets stored in your fat. Your body can store substances in fat if the liver is overwhelmed, but the research on this and how it works is incomplete at best. 80-90% of retinoic acid is stored in your liver. It's why the drug is so toxic to your liver. Again, you have to confirm with tests showing stress on your liver. Don't just assume that you have half or whatever of your Accutane treatment locked up in fat cells for a lifetime, because you don't.

There are a lot of theories about Accutane's effects, but they are likely to stay just that - theories - because in order for there to be some real progress made there have to be studies and documentation that this is all linked together and real. And the sad fact is that Roche certainly isn't going to prove that they made some kind of poison. And there isn't any money in other researchers doing the work either. Try what you can, but learn about it first from several sources so you don't inadvertently make something worse. And test, test, test - it's the only way you can be sure. Before, during, after trying something.

You have to treat the symptoms and problems as they are for you. It's no longer Accutane, it's what Accutane caused, so the "Accutane angle" just isn't going to help much at this point. Especially those of us who are years or decades out from it. If you have ED, IBS, hypogonadism, you have to treat those things. Learn all you can so that you can have an informed conversation with your doctor. And it your doctor doesn't care or won't listen then fire your doctor and get another just like you would with a plumber or mechanic.

Hypervitaminosis A can be chronic and it's treated by removing any supplements containing Vitamin A but also a vitamin A depletion diet or low vitamin A diet.
Why couldn't Accutane cause chronic hypervitaminosis A? The doses are massive and taken over a very long period of time to 'work'. People suffer from chronic hypervitaminosis A after consuming less Vitamin A (which is converted to retinoic acid in the body) than the extremely high doses of retinoic acid in accutane.
I personally don't believe the projected half life of of accutane. I prefer to believe it's probably something made up by Roche, my opinion obviously.
Anyway it makes logical sense that this massive dose taken over a long duration is going to take a long time to leave the lipids especially if the person is continuing to consume Vitamin A which is being converted to retinoic acid and maintaining the toxicity.

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1804
(@truejustice)

Posted : 06/18/2018 5:11 am

7 hours ago, Jason3 said:
It has been a long weekend with little sleep so I am feeling a little salty, but here goes:

This is what needs to be done. It's what I did to recover my well-being from my own symptoms. The simple truth is that no one is riding in to rescue anyone suffering from symptoms. WE have to take agency over OUR own health. That applies to ALL areas of your health. There are so many theories - I like to call it "broscience". Learn how your body works. It takes a lot of reading, but really isn't difficult and it is so worth it.

I watched about half of that 8 tips video. You know, if you try those things and they work for you then great. But learn on your own why they work, don't rely on a YouTube expert. It's sensationalist to me. That guy is saying that Accutane gives you Cholestasis for God's sake. If you really had that, it's a life-threatening condition, and you would know it. My wife had it while pregnant. She was bed-ridden in a hospital for 3 weeks while they tried to keep her liver from failing and her from dying. And she itched all over day and night without relief. It's just spreading fear and misinformation casually mentioning something like that in a video and sharing it around. Hypervitaminosis A. You would know it. It comes on fast and then goes away within weeks of the Vitamin A source being removed. Hallucinations, double vision, bone swelling, vomiting. If you suspect it with those symptoms, then get your liver and Retinol tested along with some bone x-rays. It's irresponsible to just tell people that Accutane causes it and by the way here is a tip to deal with it. And I stopped watching after he said a bunch of this Accutane gets stored in your fat. Your body can store substances in fat if the liver is overwhelmed, but the research on this and how it works is incomplete at best. 80-90% of retinoic acid is stored in your liver. It's why the drug is so toxic to your liver. Again, you have to confirm with tests showing stress on your liver. Don't just assume that you have half or whatever of your Accutane treatment locked up in fat cells for a lifetime, because you don't.

There are a lot of theories about Accutane's effects, but they are likely to stay just that - theories - because in order for there to be some real progress made there have to be studies and documentation that this is all linked together and real. And the sad fact is that Roche certainly isn't going to prove that they made some kind of poison. And there isn't any money in other researchers doing the work either. Try what you can, but learn about it first from several sources so you don't inadvertently make something worse. And test, test, test - it's the only way you can be sure. Before, during, after trying something.

You have to treat the symptoms and problems as they are for you. It's no longer Accutane, it's what Accutane caused, so the "Accutane angle" just isn't going to help much at this point. Especially those of us who are years or decades out from it. If you have ED, IBS, hypogonadism, you have to treat those things. Learn all you can so that you can have an informed conversation with your doctor. And it your doctor doesn't care or won't listen then fire your doctor and get another just like you would with a plumber or mechanic.

I think we have to be careful here with a few things.

Yes it may not be clear cut Hypervitaminosis A but it sure as hell mimics it.

The wording on that video might be unfortunate- again whilst it might not be clear cut cholestasis, that doesnt mean Accutane hasnt caused sluggish bile flow - I think thats the point they were trying to make...

I agree with you saying get tested and learn as you go, I think collectively were all doing this to a large extent over the years. I dont think anyone has tested positive for Hypervitaminosis A nor will anyone from Tane ever - point being that tests can only determine so much, the fact that many are saying they feel better by being on a anti Vit A diet is very encouraging - this gives me more reason to try more detoxing and liver repair!!

I think the video can be helpful in that if we look at tane as a toxic dose of Vit A, surely any level of detoxing is going to help get some of that toxic dose out of the body quicker than doing nothing at all?
Combining this with the anti Vit A diet sounds like a good idea to me.

Taking things like Tudca are surely going to help the liver get rid of that toxic load along with Calcium D Glucarate to expel it from the body.....could be wrong but Im up for another shot at detoxing.

Some will say Tane is long gone from the body, I dont think anyone can say for sure though, no one has tested positive for Vit A overload - If it was only that easy, wed of been out of this shit years ago.

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MemberMember
10
(@jason3)

Posted : 06/18/2018 7:29 am

1 hour ago, TrueJustice said:
I think we have to be careful here with a few things.

Yes it may not be clear cut Hypervitaminosis A but it sure as hell mimics it.

The wording on that video might be unfortunate- again whilst it might not be clear cut cholestasis, that doesnt mean Accutane hasnt caused sluggish bile flow - I think thats the point they were trying to make...

I agree with you saying get tested and learn as you go, I think collectively were all doing this to a large extent over the years. I dont think anyone has tested positive for Hypervitaminosis A nor will anyone from Tane ever - point being that tests can only determine so much, the fact that many are saying they feel better by being on a anti Vit A diet is very encouraging - this gives me more reason to try more detoxing and liver repair!!

I think the video can be helpful in that if we look at tane as a toxic dose of Vit A, surely any level of detoxing is going to help get some of that toxic dose out of the body quicker than doing nothing at all?
Combining this with the anti Vit A diet sounds like a good idea to me.

Taking things like Tudca are surely going to help the liver get rid of that toxic load along with Calcium D Glucarate to expel it from the body.....could be wrong but Im up for another shot at detoxing.

Some will say Tane is long gone from the body, I dont think anyone can say for sure though, no one has tested positive for Vit A overload - If it was only that easy, wed of been out of this shit years ago.

I agree with you and things needed to be worded carefully. I think that liver detox is a great thing and most should do it regardless of what medications you took. Tudca is better at detoxing your liver faster initially, whereas NAC is better (and cheaper) for maintaining it. My liver looks fantastic and I still take 1200mg of NAC daily because it's good for me.

I just can't buy that we store a lifetime of Accutane in our fat. If our bodies stored excess toxins to such a degree then we would be dead from all of the toxicity of the world that we eat and are exposed to every day. Since going on hormone replacement, I've gone from 34% to 17.5% bodyfat and noticed zero difference. By the fat storing logic I would have released / removed half of the stored toxins (Accutane and otherwise) because half of my fat burned off. A half life is a half life. It isn't some made up conspiracy. Accutane has been in research and use for 40 years. Roche is not the only one who has studied the drug. The drug does damage to some people before it is eliminated, something permanent.

Definitely try anything you can to feel better. No one else has the interest in doing that for us. It's the only way to know and learn what works and what doesn't. I just don't care for the theories and conspiracies like how the video comes across to me. Removing that and the emotion will help us to better see better how to improve without clouding our judgement.

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1
(@christafari)

Posted : 06/18/2018 11:29 am

Did anyone on this thread get permanent sides from a low dose? Thinking of going on low dose, as my acne is pretty mild but has been persistent for years. Very tired of it! A low dose should minimise the potential of sides?

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1
(@christafari)

Posted : 06/18/2018 3:19 pm

Fair enough, if only there was an alternative to this drug!

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1804
(@truejustice)

Posted : 06/18/2018 5:32 pm

9 hours ago, Jason3 said:
I agree with you and things needed to be worded carefully. I think that liver detox is a great thing and most should do it regardless of what medications you took. Tudca is better at detoxing your liver faster initially, whereas NAC is better (and cheaper) for maintaining it. My liver looks fantastic and I still take 1200mg of NAC daily because it's good for me.

I just can't buy that we store a lifetime of Accutane in our fat. If our bodies stored excess toxins to such a degree then we would be dead from all of the toxicity of the world that we eat and are exposed to every day. Since going on hormone replacement, I've gone from 34% to 17.5% bodyfat and noticed zero difference. By the fat storing logic I would have released / removed half of the stored toxins (Accutane and otherwise) because half of my fat burned off. A half life is a half life. It isn't some made up conspiracy. Accutane has been in research and use for 40 years. Roche is not the only one who has studied the drug. The drug does damage to some people before it is eliminated, something permanent.

Definitely try anything you can to feel better. No one else has the interest in doing that for us. It's the only way to know and learn what works and what doesn't. I just don't care for the theories and conspiracies like how the video comes across to me. Removing that and the emotion will help us to better see better how to improve without clouding our judgement.

All very valid points and smart logic here.

Detoxing is one thing, Im still very much aware of other things you and others have mentioned liked genome damage, Accutanes ability to mess up hormones, its abil to screw up gut health - no amount of detoxing will help these things if thats what you happen to be left with.

My loss of sebum production would prob point more towards hormone issues over say toxicity- having said that its not going to hurt to do more detoxing and try to heal the liver - if it does infact need healing, the only thing Ive ever been diagnosed with liver wise is that its fatty - will Tudca or NAC help that?
Maybe....

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10
(@jason3)

Posted : 06/18/2018 7:47 pm

2 hours ago, TrueJustice said:
All very valid points and smart logic here.

Detoxing is one thing, Im still very much aware of other things you and others have mentioned liked genome damage, Accutanes ability to mess up hormones, its abil to screw up gut health - no amount of detoxing will help these things if thats what you happen to be left with.

My loss of sebum production would prob point more towards hormone issues over say toxicity- having said that its not going to hurt to do more detoxing and try to heal the liver - if it does infact need healing, the only thing Ive ever been diagnosed with liver wise is that its fatty - will Tudca or NAC help that?
Maybe....

I believe Tudca can help with NAFLD.

Have you ever tried Metformin? I know a couple of guys who have IBS and they say that Metformin helps. There are several benefits other than lowering glucose. It improves your gut microbiome.

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2
(@cyclope)

Posted : 06/19/2018 9:52 am

I'm a new accutane suffer, i took multiple courses of accutane, never had any side effect, other than dry lips that always vanished one week after i stop taking tane.

My last course, i had a headache while in tane for the first time in my life, 5 days later it was a total ED. I stopped taking tane, one month later new symptoms appeared (Dry hands, dry mouth, dry eyes - They manifested in one day not gradually).

Symptoms
During:
Total Erectile Dysfunction (Improved by %20 after 2 months, crashed again after 5 months - Genital Numbness) (Noticed 15 Dec 2017)

Post:
Faceflushing (My face was totally red, only for 2 consecutive days post tane)
Cracking knee.
Loss of Libido.
Loss of Morning Erections/Spontaneous Erections/Nocturnal Erections.
Watery Ejaculate
When i reach orgasm, i feel nothing in my brain, i used to feel pleasure and total relaxation, now, it's as nothing happened.
Dry hand and significant wrinkles in hand palm
Memory Loss
Anxiety (Due to the ED symptoms)
Depression (Same)

I'm 6 months post tane, some side effect improved (Memory loss, anxiety, depression), some persisted and caused further issue dry mouth (Excessive gum recession), dry hand, dry eyes. Skin oil returned after 2 months but still dry. Some of my symptom worsened, mainly the eye dryness, also, low Sperm Volume compared to before.
Blood test:
- FSH = 2.59 miu/ml (1.7 - 12.0)
- LH = 3.26 miu/ml (1.1 - 7)
- TSH = 1.19 uui/ml ( 0.25 - 5) (It was 4.08, 3 Months Before taking tane)

I can tell that i went through all the 630 previous pages, i started taking some supplements without significant result, tried 30 days of intermittent fasting which helped with my ED, but it wasn't permanent. Not sure what to try next.

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2
(@cyclope)

Posted : 06/19/2018 1:45 pm

49 minutes ago, Devolution said:
As you've seen some results from intermittent fasting maybe keep at it for longer and see if you can manage to get some a permenant changes?
1

Defenetevey, my ED improved during fasting and i can say that changes are permanent, as i can get an erection now (Still weak but better, semen volume is still low though). I'm not sure if it was due to fasting or time (Started fasting 5 months post-tane), also it's worth to mention that some side effect vanished, like theface flushing 1-month post tane (Got it for 2 consecutive days).

I can say that it seems like something is downregulated (5ar) or accumulated (VitA) every time i start a tanecourse, until it reached the limit.

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(@christafari)

Posted : 06/19/2018 1:59 pm

Can you guys enlighten me as to why Accutane can cause hormonal/sexual problems?? How can it affect this?

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0
(@kolonie)

Posted : 06/19/2018 2:03 pm

 Hear me ! :D

accutans half life is just a few hours.
it is out of your body in a few days!!!
everybody had dry lips, but if you stopped taking accutan, in max 2 weeks you lips are normal again.
so accutan is OUT!!

is is useless to clean you liver or try to clean you body, there is nothing to clean! It do not take years for you body to take a poison out, that™s senseless..

the reason why you have side effects after taking accutan is simply becomes accountable damaged something in your body.. and no diet or supplement can you heal..
you DNA or 

Autonomic Nervous System is broken..
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39
(@mikez)

Posted : 06/19/2018 2:16 pm

44 minutes ago, Christafari said:

Can you guys enlighten me as to why Accutane can cause hormonal/sexual problems?? How can it affect this?

I'm not sure they know the mechanism, but it down regulates most pituitary hormones, at least while you're on it. E.g., Cortisol, thyroid, testosterone etc etc. This of course doesn't happen to everyone. I'm not sure if they've done any studies monitoring these hormones after discontinuation of Accutane.

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7
(@akos)

Posted : 06/19/2018 3:13 pm

On 6/18/2018 at 1:29 PM, Christafari said:

Did anyone on this thread get permanent sides from a low dose? Thinking of going on low dose, as my acne is pretty mild but has been persistent for years. Very tired of it! A low dose should minimise the potential of sides?

Yes, I did read about people having long-term side effects with just a few weeks of Accutane, or just taking a few pills.

The fact is: if you dont have long-term/permanent side effects, you dont have long-term/permanent desired effects (reduction of acne). So why would you take it in the first place?

Why would you take Accutane? I guess, to reduce acne. Do you know how it could reduce acne in the long term? By reducing the amount of sebum (we dont know exactly if the drug shrinks the sebaceous glands, physically, or it inhibits somehow the sebaceous glands or other more important glands in the body, or it does some other unknown change). If you achieve this situation, then you will experience any kind of problem in your body. Accutane invades all your body and you cant choose where you want it to work.

Sebum production should be normalized some weeks after the last pill. But this will not happen sometimes. And even if it happens, it could reduce sebum a bit (and I read that sebum could also increase a bit). And if you notice sebum is exactly as before, and you dont notice any side effect (how would you know for sure, if it dries a bit your eyes, or it weakens somehow some other organ, initiating a process that you will notice in the future?) you also will ask yourself why you took Accutane, risking your general health, to be exactly as before.

Accutane could be useful for people with intense cystic acne, to break the vicious circle and clean their faces and begin from scratch, with a positive mind. But I wouldnt even recommend the drug to this particular people.

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(@jason3)

Posted : 06/19/2018 6:55 pm

8 hours ago, Cyclope said:

I'm a new accutane suffer, i took multiple courses of accutane, never had any side effect, other than dry lips that always vanished one week after i stop taking tane.

My last course, i had a headache while in tane for the first time in my life, 5 days later it was a total ED. I stopped taking tane, one month later new symptoms appeared (Dry hands, dry mouth, dry eyes - They manifested in one day not gradually).

Symptoms
During:
Total Erectile Dysfunction (Improved by %20 after 2 months, crashed again after 5 months - Genital Numbness) (Noticed 15 Dec 2017)

Post:
Faceflushing (My face was totally red, only for 2 consecutive days post tane)
Cracking knee.
Loss of Libido.
Loss of Morning Erections/Spontaneous Erections/Nocturnal Erections.
Watery Ejaculate
When i reach orgasm, i feel nothing in my brain, i used to feel pleasure and total relaxation, now, it's as nothing happened.
Dry hand and significant wrinkles in hand palm
Memory Loss
Anxiety (Due to the ED symptoms)
Depression (Same)

I'm 6 months post tane, some side effect improved (Memory loss, anxiety, depression), some persisted and caused further issue dry mouth (Excessive gum recession), dry hand, dry eyes. Skin oil returned after 2 months but still dry. Some of my symptom worsened, mainly the eye dryness, also, low Sperm Volume compared to before.
Blood test:
- FSH = 2.59 miu/ml (1.7 - 12.0)
- LH = 3.26 miu/ml (1.1 - 7)
- TSH = 1.19 uui/ml ( 0.25 - 5) (It was 4.08, 3 Months Before taking tane)

I can tell that i went through all the 630 previous pages, i started taking some supplements without significant result, tried 30 days of intermittent fasting which helped with my ED, but it wasn't permanent. Not sure what to try next.

LH and FSH are not nearly enough. You need Total and Free Testosterone, CMP, DHT, Prolactin. IGF-1 would be good too.

TSH is only going to catch really obvious thyroid problems well after they have manifested themselves. Its sort of like relying on glucose to screen for diabetes. Not a great indicator because its the last thing to go bad after everything else is out of whack. Comprehensive thyroid would include Free T3,Free T4, and most importantly Reverse T3.

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1803
(@guitarman01)

Posted : 06/19/2018 7:24 pm

@mariovitali
abnormal immune system reaction.
Do you think its a overactive immune system or underactive?

34 minutes ago, Jason3 said:

TSH is only going to catch really obvious thyroid problems

I myself have gone as far as a thyroid ultrasound along with above mentioned tests.

Even during periods of extreme ed,All hormones have tested relatively normal. You could find this in PFS as well.

5 hours ago, Kolonie said:

Autonomic Nervous System is broken..

Theenteric nervous system(ENS) orintrinsic nervous systemis one of the main divisions of theautonomic nervous system(ANS) and consists of a mesh-like system ofneuronsthat governs the function of thegastrointestinal tract.[1]It is capable of acting independently of thesympatheticandparasympathetic nervous systems, although it may be influenced by them. The ENS is also called the second brain.[

Stress, Sex and the Enteric Nervous System

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5003424/
the largest immune response reservoir of the body

highly susceptible to microenvironmental changes.

The Central Mechanisms of Sexual Function Sexual Medicine BUMC

www.bumc.bu.edu/sexualmedicine/.../the-central-mechanisms-of-sexual-function/

There has, however, been growing interest in the role of the centralnervous system(CNS) in the control oferectile function, and researchers have begun to...

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MemberMember
1803
(@guitarman01)

Posted : 06/19/2018 7:39 pm

On a side note,
Did you know your eyes have their own microbiome?

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MemberMember
8
(@benjamin94)

Posted : 06/20/2018 6:26 am

20 hours ago, Cyclope said:

I'm a new accutane suffer, i took multiple courses of accutane, never had any side effect, other than dry lips that always vanished one week after i stop taking tane.

My last course, i had a headache while in tane for the first time in my life, 5 days later it was a total ED. I stopped taking tane, one month later new symptoms appeared (Dry hands, dry mouth, dry eyes - They manifested in one day not gradually).

Symptoms
During:
Total Erectile Dysfunction (Improved by %20 after 2 months, crashed again after 5 months - Genital Numbness) (Noticed 15 Dec 2017)

Post:
Faceflushing (My face was totally red, only for 2 consecutive days post tane)
Cracking knee.
Loss of Libido.
Loss of Morning Erections/Spontaneous Erections/Nocturnal Erections.
Watery Ejaculate
When i reach orgasm, i feel nothing in my brain, i used to feel pleasure and total relaxation, now, it's as nothing happened.
Dry hand and significant wrinkles in hand palm
Memory Loss
Anxiety (Due to the ED symptoms)
Depression (Same)

I'm 6 months post tane, some side effect improved (Memory loss, anxiety, depression), some persisted and caused further issue dry mouth (Excessive gum recession), dry hand, dry eyes. Skin oil returned after 2 months but still dry. Some of my symptom worsened, mainly the eye dryness, also, low Sperm Volume compared to before.
Blood test:
- FSH = 2.59 miu/ml (1.7 - 12.0)
- LH = 3.26 miu/ml (1.1 - 7)
- TSH = 1.19 uui/ml ( 0.25 - 5) (It was 4.08, 3 Months Before taking tane)

I can tell that i went through all the 630 previous pages, i started taking some supplements without significant result, tried 30 days of intermittent fasting which helped with my ED, but it wasn't permanent. Not sure what to try next.

TSH does fluctuate naturally, as long as it remains in the normal range its fine. You are Euthyroid.

I think you do need your Testosterone measuring and Prolactin if they havnt already been done.

Testosterone is likely to be normal given that your FSH and LH are normal, but it would still be worth doing.

Prolactin definately needs to be done if it hasnt already, especially if you are getting headaches.

The skin dryness is mostlikely attributable to the drug, which has permenantly reduced your sebaceous output. This is one of the key ways it prevents acne long term. You can get a moisturizer.

Facial Redness and Flushing - likely idiopathic (i.e. Rosacea). Very difficult to do anything about. Theres a forum dedicated to Rosacea, where they discuss different creams in details.

Anxiety and Depression - Find something you enjoy doing. Maybe its going swimming or to the sauna. Find something which relaxes you, which you can do cheaply each day if necessary.

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MemberMember
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(@jason3)

Posted : 06/20/2018 6:48 am

11 hours ago, guitarman01 said:

Even during periods of extreme ed,All hormones have tested relatively normal. You could find this in PFS as well.

Yes, this is very true and it's one of the big mysteries. I myself had this problem (normal, even high testosterone from TRT treatment and still had ED). Really the only way I have seen it treated is to still give testosterone and try to overwhelm the androgen receptors. But this still sometimes does not work.

What more progressive doctors are doing is prescribing a compounded testosterone cream from a compounding pharmacy. It can be custom-made with a much higher % of testosterone than what you can find in Androgel or Testim. It costs less too. You then apply it to your scrotum daily instead of your arms/shoulders. T cream applied to the scrotum will raise DHT faster and higher than anything else, and that does help libido and ED after a couple of months.

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1804
(@truejustice)

Posted : 06/20/2018 7:44 am

1 hour ago, Benjamin94 said:
TSH does fluctuate naturally, as long as it remains in the normal range its fine. You are Euthyroid.

I think you do need your Testosterone measuring and Prolactin if they havnt already been done.

Testosterone is likely to be normal given that your FSH and LH are normal, but it would still be worth doing.

Prolactin definately needs to be done if it hasnt already, especially if you are getting headaches.

The skin dryness is mostlikely attributable to the drug, which has permenantly reduced your sebaceous output. This is one of the key ways it prevents acne long term. You can get a moisturizer.

Facial Redness and Flushing - likely idiopathic (i.e. Rosacea). Very difficult to do anything about. Theres a forum dedicated to Rosacea, where they discuss different creams in details.

Anxiety and Depression - Find something you enjoy doing. Maybe its going swimming or to the sauna. Find something which relaxes you, which you can do cheaply each day if necessary.

I love hearing the word permanent in relation to Accutane - NOT

Do we really know for sure that sebaceous output is permanently altered?

I thought Jason3 said sebum production increased via testosterone treatment. Not that Id consider treatment just to fix sebaceous glands but hey it still gives me hope that some oil may one day return.

Using moisturiser is helpful at times but nowhere near the same as just having some regular oil back in the skin.

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(@abi72)

Posted : 06/20/2018 9:16 am

We need you to report your sides! We must make the regulators acknowledge
POST ACCUTANE SYNDROME!

Iknow that in the big scheme of things taking action won't necessarily help you but it will stop this happening to others andI really hope that by getting recognition wecan then insist on a task force to research the condition and find a cure!
Many men are now coming forward but it is mostly older men who have beensuffering for years - we still need young men to come forward
to report their side effects and to explain how accutane impacted their lives.

We need age and sex(compulsory for yellow card purposes). approx. dosage and duration. List of side effects and please include suicidal ideation if you have ever experience this.
Describe you case history as if you were telling your story to a solicitor.
Optional - explain why you never reported before - I want decision makers to try and understand why young men don't come forward.
Optional - explain the way in which your dermatologist treated you before during and after accutane.

Its a very sad thing to imagine the amount of young people suffering in silence.

Those with a voice must speak up and thankfully it can be done anonymouslyif you prefer.

Below is a list of emails - you can copy and paste and send as one.

You must state that you are addressing them all as individuals and that you want an acknowledgement and a response fromeach of them.

[removed]

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(@benjamin94)

Posted : 06/21/2018 4:02 am

Hi True Justice

So of course sebaceous output returns in some people - these will likely be the people for whom acne recurs.

Unfortunately accutane isnt a magic wand for acne. It has a mechanism and that mechanism is shrinking the sebaceous glands and that comes at a cost, which is xerosis.

On a side note, I dont think youre using the term Eye Floater correctly. An eye floater is a spot of vitreal degradation. Ive never heard of accutane causing eye floaters. I think you might be talking about meibomian cysts, often called styes (although strictly styes means hordeola its commonly used for meibomian cysts), which are caused by accutane.

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