10 hours ago, marshl1 said:

Im sure this theory has been discussed here many times by far more knowledgeable people than myself but what do people think about all these issues we have being down to chronic vitamin A toxicity?
Maybe a low vitamin A diet can allow the body to get rid of excess vitamin A/Retinol stored in the liver and kidneys if you believe the theory.
I certainly have plenty of the symptoms of vitamin A toxicity and have had them for about 5 years.
Tension headaches caused by possible raised intracranial pressure, night blindness, sensitivity to sunlight, dizziness, bone pain, fatigue

Has anyone here ever had their Blood Isotretinoin, 4-oxo-isotretinoin or vitamin A levels measured?

I haven't heard the theory that Tane itself stays in the system (as compared to the changes it causes), but I would believe it for sure.

I tried Retinol capsules for about 10 days around 7 years ago to test the functional deficiency theory going around. I remember a spark in libido and hair growth (noticeable), but increases in headaches, depression, and insomnia. It took 3 weeks to get over that and I haven't messed with it since. I figure I get enough from dairy and egg products. I also had my levels tested and they were normal, although I know like most normal results, it doesn't say anything about receptors.

Let me ask this, dont except anyone to answer though...

If one was to overdose on Vit A, sure you get all the toxic effects but I reckonyoud recover pretty easily by coming just comingoff it.
Why then with tane do we have persistent side effects?? What is different in tane vs just Vit A??

Its like the body is tricked intosome sort of condition- that cant be said with just taking Vit A - youd have the problem then quickly get over it and on with your life - not with tane however!!

Which begs the question- what is in a tane capsule that makes it a chemo drug....can someone answer that???

find this SO interesting as i used to get big welts from mosquito bites and haven™t since these tane effects started happening.. 

AND i have ridiculously high DHEA

again.. interesting 

6 hours ago, TrueJustice said:

Let me ask this, dont except anyone to answer though...

If one was to overdose on Vit A, sure you get all the toxic effects but I reckonyoud recover pretty easily by coming just comingoff it.
Why then with tane do we have persistent side effects?? What is different in tane vs just Vit A??

Its like the body is tricked intosome sort of condition- that cant be said with just taking Vit A - youd have the problem then quickly get over it and on with your life - not with tane however!!

Which begs the question- what is in a tane capsule that makes it a chemo drug....can someone answer that???

Firstly Isotretinoin is only very rarely used as a chemo agent and compared to drugs like Adriamycin and Cisplatin, isotretinoin is a very friendly drug.

At present the consensus among biomedical scientists is that the drug doesnt remain in your system long term. Instead persistant effect is due to the changes it produces whilst you are taking it. For instance it shrinks the sebacious glands and this produces a long lasting anti-acne effect.

Ok, but youd have to agree then that Vit A is much different to Accutane correct?

So the guy who wrote that ebook on Vit A, why would he even bring up isotretinoin?

like I said, you have toxic effects taking just Vit A, no problem theyll diminish once you cease taking it, Accutane different story - you have side effects 30 years later.....WHY??

It obviously does more than just dry out the sebaceous glands....

51 minutes ago, TrueJustice said:

Ok, but youd have to agree then that Vit A is much different to Accutane correct?

So the guy who wrote that ebook on Vit A, why would he even bring up isotretinoin?

like I said, you have toxic effects taking just Vit A, no problem theyll diminish once you cease taking it, Accutane different story - you have side effects 30 years later.....WHY??

It obviously does more than just dry out the sebaceous glands....

I'm with you on this. I need to read more but my understanding of the theory at the moment is that there is a threshold level of vitamin A storage and once you pass that level the problems start.
You are suggesting that Isotretinoin is different to vitamin A because it causes side effects lasting long after the drug was stopped but the whole purpose of the eBook is to provide evidence that

1) Vitmain A is not a vitamin it's a toxin.
2) A chronic build up of Vitamin A in the body leads to a plethora of illness, anything form autoimmune conditions to Alzheimers.

Taking huge doses of Isotretioin would take you way passed this proposed threshold and far too early in life. The continuous consumption of dietary Vitamin A keeps you well above the threshold and prevents your body from ever having the chance to fully heal.
If one was to believe this theory then the action to take would be to consume a low vitamin A diet which is very difficult and find some way to expel the excess vitamin A stored in the liver, kidneys and adipose tissue to try and get back under the threshold, at which point your body can start to heal itself.

8 hours ago, TrueJustice said:

Let me ask this, dont except anyone to answer though...

If one was to overdose on Vit A, sure you get all the toxic effects but I reckonyoud recover pretty easily by coming just comingoff it.
Why then with tane do we have persistent side effects?? What is different in tane vs just Vit A??

Its like the body is tricked intosome sort of condition- that cant be said with just taking Vit A - youd have the problem then quickly get over it and on with your life - not with tane however!!

Which begs the question- what is in a tane capsule that makes it a chemo drug....can someone answer that???

Think about this however. How many samples of people do we have (for the basis of comparison) where they took the equivalent mega dose of vitamin A for 8 months?

I guess the obvious thing to do is to get off all Vit A foods and see if theres an improvement

If we do this will we see things as simple as eye floaters disappear, will thinning hair and super dry skin revert back to normal??

maybe theyll improve. That guy who wrote the ebook could be a real maverick and I think it makes sense for us to discuss what he is proposing, no doubt about it.

Im curious though how youd treat night blindness without Vit A? If Vit A really is a toxin why would the human body respond in a positive way with treatment??
It suggests to me that the body does need Vit A even in tiny amounts - correct?

18 minutes ago, TrueJustice said:

I guess the obvious thing to do is to get off all Vit A foods and see if theres an improvement

If we do this will we see things as simple as eye floaters disappear, will thinning hair and super dry skin revert back to normal??

maybe theyll improve. That guy who wrote the ebook could be a real maverick and I think it makes sense for us to discuss what he is proposing, no doubt about it.

Im curious though how youd treat night blindness without Vit A? If Vit A really is a toxin why would the human body respond in a positive way with treatment??
It suggests to me that the body does need Vit A even in tiny amounts - correct?

I haven't quite covered it yet but aapparently these early experiments with Vitamin A were botched.
Vitamin A alone wasn't given to these patients to correct night blindness, it was given with some form of fat which it's suggested was the nourishing factor for these patients. I shouldn't really comment on this until i've completed the reading but im quite excited by this. It's a revelation to me.
And btw my floaters drive me crazy, i've thought may times about a floaters only vitrectomy procedure.They definitely appeared around the time I took Accutane but I have also had LASIK so I was never sure which one caused them. Imagine if they imrpoced on a low vitmain A diet??

That said, the reality of a very low vitamin A diet is extremely challenging. I think key would be find something that assists this process of expelling excess vitamin a/retinol. There's some smart people on this thread so I was hoping there would be some good suggestions for this.

Thanks

5 hours ago, TrueJustice said:

I guess the obvious thing to do is to get off all Vit A foods and see if theres an improvement

If we do this will we see things as simple as eye floaters disappear, will thinning hair and super dry skin revert back to normal??

maybe theyll improve. That guy who wrote the ebook could be a real maverick and I think it makes sense for us to discuss what he is proposing, no doubt about it.

Im curious though how youd treat night blindness without Vit A? If Vit A really is a toxin why would the human body respond in a positive way with treatment??
It suggests to me that the body does need Vit A even in tiny amounts - correct?

The specific retinoid poisoning Isotretinoin induces has been shown to cause Vitamin A deficiency, not vitamin A toxicity.

Isotretinoin-Induced Night Blindness
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4533586/

That is why I megadosed it as my first attempt in treating long term accutane sides. The first week I felt good, thought more must be better, and ended up poisoning myself. So don't megadose, however taking a normal dose is fine, and avoiding it would be counterproductive I think.

I looked into it a few years ago, and it seemed that isotretinoin attaches to all your retinoid receptors, changing their usual function which causes tonnes of changes in your body. By having some vitamin a available it reduces those effects, but too much vitamin a affects other fat-soluable vitamins, among other adverse effects

Retinoic Acid Restores Adult Hippocampal Neurogenesis and Reverses Spatial Memory Deficit in Vitamin A Deprived Rats
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0003487
"A dysfunction of retinoid hippocampal signaling pathway has been involved in the appearance of affective and cognitive disorders. However, the underlying neurobiological mechanisms remain unknown. Hippocampal granule neurons are generated throughout life and are involved in emotion and memory. Here, we investigated the effects of vitamin A deficiency (VAD) on neurogenesis and memory and the ability of retinoic acid (RA) treatment to prevent VAD-induced impairments. Adult retinoid-deficient rats were generated by a vitamin A-free diet from weaning in order to allow a normal development. The effects of VAD and/or RA administration were examined on hippocampal neurogenesis, retinoid target genes such as neurotrophin receptors and spatial reference memory measured in the water maze. Long-term VAD decreased neurogenesis and led to memory deficits. More importantly, these effects were reversed by 4 weeks of RA treatment. These beneficial effects may be in part related to an up-regulation of retinoid-mediated molecular events, such as the expression of the neurotrophin receptor TrkA. We have demonstrated for the first time that the effect of vitamin A deficient diet on the level of hippoccampal neurogenesis is reversible and that RA treatment is important for the maintenance of the hippocampal plasticity and function."

basically says VAD impacts neurogenisis. Because having isotretinion can cause VAD, avoiding vit A can exacerbate the neg sides of accutane

Vitamin A and Retinoids as Mitochondrial Toxicants
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452429/

"It has been shown that retinoids possess an ability to alter cell cycle and to induce apoptosis in some experimental models. It was published that the treatment of adult mice with 13-cis-retinoic acid at 1mg/kgday¹(a clinical dose commonly applied in the treatment of nodular acne) for 16 weeks suppressed hippocampal cell division (neurogenesis) and, consequently, decreased capacity to learn in behavioral task [133]. Accordingly, Sakai et al. demonstrated increased cell loss in the hippocampus of mice treated for 3 weeks with 13-cis-retinoic acid at 1mg/kgday¹[134]. The mechanism by which 13-cis-retinoic acid altered neurogenesis and induced cell death in mice hippocampus is not clear, but it has been reported that this retinoid may trigger apoptosis through activation of caspase-3 and by modulating bcl2 and p53 gene expression in melanoma cells [135]. Reinforcing the finding that a retinoid may induce negative consequences to hippocampal function, it was reported that vitamin A supplementation with retinol palmitate induced anxiety-like behavior in adult rats [63]. Anxiety is a behavior closely related to alterations in the function of hippocampus and significantly decreases human life quality [136138]. Furthermore, studies in humans demonstrated that the use of 13-cis-retinoic acid (as treatment to nodular acne) decreased metabolism in orbitofrontal cortex, a region associated with depression [119]. Indeed, there is a strong body of evidence showing that 13-cis-retinoic acid (isotretinoin) induced depression and increased both suicide ideation and suicide rates among some patients under such treatment [120124]. However, it remains to be elucidated whether there is a causal link between bioenergetics impairment and neuronal dysfunction that leads to detrimental alteration in human behavior."

Basically says what we know, that accutane fucks up the brain. Says the same can happen with vitamin A under very high doses, so don't megadose
Obligatory plug for my hippocampal/brain theory of accutane side effects, check my research and whatever on this thread https://www.acne.org/messageboard/topic/377887-curing-post-accutane-syndrome-post-retinoid-sexual-disorder-is-a-part-of-that/?tab=comments#comment-3595283

good luck everyone!

5 hours ago, Fchawk said:

The specific retinoid poisoning Isotretinoin induces has been shown to cause Vitamin A deficiency, not vitamin A toxicity.

Isotretinoin-Induced Night Blindness
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4533586/

That is why I megadosed it as my first attempt in treating long term accutane sides. The first week I felt good, thought more must be better, and ended up poisoning myself. So don't megadose, however taking a normal dose is fine, and avoiding it would be counterproductive I think.

I looked into it a few years ago, and it seemed that isotretinoin attaches to all your retinoid receptors, changing their usual function which causes tonnes of changes in your body. By having some vitamin a available it reduces those effects, but too much vitamin a affects other fat-soluable vitamins, among other adverse effects

Retinoic Acid Restores Adult Hippocampal Neurogenesis and Reverses Spatial Memory Deficit in Vitamin A Deprived Rats
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0003487
"A dysfunction of retinoid hippocampal signaling pathway has been involved in the appearance of affective and cognitive disorders. However, the underlying neurobiological mechanisms remain unknown. Hippocampal granule neurons are generated throughout life and are involved in emotion and memory. Here, we investigated the effects of vitamin A deficiency (VAD) on neurogenesis and memory and the ability of retinoic acid (RA) treatment to prevent VAD-induced impairments. Adult retinoid-deficient rats were generated by a vitamin A-free diet from weaning in order to allow a normal development. The effects of VAD and/or RA administration were examined on hippocampal neurogenesis, retinoid target genes such as neurotrophin receptors and spatial reference memory measured in the water maze. Long-term VAD decreased neurogenesis and led to memory deficits. More importantly, these effects were reversed by 4 weeks of RA treatment. These beneficial effects may be in part related to an up-regulation of retinoid-mediated molecular events, such as the expression of the neurotrophin receptor TrkA. We have demonstrated for the first time that the effect of vitamin A deficient diet on the level of hippoccampal neurogenesis is reversible and that RA treatment is important for the maintenance of the hippocampal plasticity and function."

basically says VAD impacts neurogenisis. Because having isotretinion can cause VAD, avoiding vit A can exacerbate the neg sides of accutane

Vitamin A and Retinoids as Mitochondrial Toxicants
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452429/

"It has been shown that retinoids possess an ability to alter cell cycle and to induce apoptosis in some experimental models. It was published that the treatment of adult mice with 13-cis-retinoic acid at 1mg/kgday¹(a clinical dose commonly applied in the treatment of nodular acne) for 16 weeks suppressed hippocampal cell division (neurogenesis) and, consequently, decreased capacity to learn in behavioral task [133]. Accordingly, Sakai et al. demonstrated increased cell loss in the hippocampus of mice treated for 3 weeks with 13-cis-retinoic acid at 1mg/kgday¹[134]. The mechanism by which 13-cis-retinoic acid altered neurogenesis and induced cell death in mice hippocampus is not clear, but it has been reported that this retinoid may trigger apoptosis through activation of caspase-3 and by modulating bcl2 and p53 gene expression in melanoma cells [135]. Reinforcing the finding that a retinoid may induce negative consequences to hippocampal function, it was reported that vitamin A supplementation with retinol palmitate induced anxiety-like behavior in adult rats [63]. Anxiety is a behavior closely related to alterations in the function of hippocampus and significantly decreases human life quality [136138]. Furthermore, studies in humans demonstrated that the use of 13-cis-retinoic acid (as treatment to nodular acne) decreased metabolism in orbitofrontal cortex, a region associated with depression [119]. Indeed, there is a strong body of evidence showing that 13-cis-retinoic acid (isotretinoin) induced depression and increased both suicide ideation and suicide rates among some patients under such treatment [120124]. However, it remains to be elucidated whether there is a causal link between bioenergetics impairment and neuronal dysfunction that leads to detrimental alteration in human behavior."

Basically says what we know, that accutane fucks up the brain. Says the same can happen with vitamin A under very high doses, so don't megadose
Obligatory plug for my hippocampal/brain theory of accutane side effects, check my research and whatever on this thread https://www.acne.org/messageboard/topic/377887-curing-post-accutane-syndrome-post-retinoid-sexual-disorder-is-a-part-of-that/?tab=comments#comment-3595283

good luck everyone!

Vitamin A is converted to Retinoic Acid in the body naturally. Accutane is Retinoic Acid.
By supplementing with more Vitamin A which will be converted to Retinoic Acid within the body then aren't you effectively giving yourself more of the same poison?

Thanks,
Lee

2 hours ago, marshl1 said:

Vitamin A is converted to Retinoic Acid in the body naturally. Accutane is Retinoic Acid.
By supplementing with more Vitamin A which will be converted to Retinoic Acid within the body then aren't you effectively giving yourself more of the same poison?

Thanks,
Lee

What is the reason again for donating money to that program looking for a cure?

Have they not seen Fchawk protocol??

Im not taking the piss - Id really like to know.

What are they researching that he hasnt already outlined in the link in his post??

1 hour ago, marshl1 said:

3 hours ago, marshl1 said:

Vitamin A is converted to Retinoic Acid in the body naturally. Accutane is Retinoic Acid.
By supplementing with more Vitamin A which will be converted to Retinoic Acid within the body then aren't you effectively giving yourself more of the same poison?

Thanks,
Lee

To add to this, Im not someone who goes out of my way to avoid Vit A - theres no way I dont get enough in my diet surely - I drink milk, eat cheese & eggs etc.

I dont feel different if I do or dont eat these things which makes me think it isnt the levels Im consuming its more to do with receptors in my body and how they work or arent working after tane

Fchawk says this and I agree - I want to know how to fix those receptors cause the Vit A I consume like he mentions is doing fuck all, what else can be done is the million dollar question!!

Where exactly are we at with the intent of this thread's title? Can someone post a summary perhaps of the major damages caused by Accutane, the best known interventions for these, and what is known not to work? There are 627 pages of comments including what look like several people just in the last few weeks doing their own things getting cases, theorizing, and coming up with their own initiatives. This is great and shows that there is obviously a need for awareness, but I see no definitive guide or organization listing out: have this problem? try this or try that, but don't bother with this other thing because we know it doesn't work.

I think that would be extraordinarily helpful to someone new like me coming across this forum to see where progress has been made and where it has not, lists of doctors who are knowledgeable and open to discussion about this topic, who treat it, and then potentially be able to add to that. I took Accutane, I suffered from problems, I've had success fixing some of them. But I'm not reading 627 pages of comments to get up to speed to start being able to have a discussion.

Thanks!

On 6/1/2018 at 9:08 AM, Jason3 said:

Where exactly are we at with the intent of this thread's title? Can someone post a summary perhaps of the major damages caused by Accutane, the best known interventions for these, and what is known not to work? There are 627 pages of comments including what look like several people just in the last few weeks doing their own things getting cases, theorizing, and coming up with their own initiatives. This is great and shows that there is obviously a need for awareness, but I see no definitive guide or organization listing out: have this problem? try this or try that, but don't bother with this other thing because we know it doesn't work.

I think that would be extraordinarily helpful to someone new like me coming across this forum to see where progress has been made and where it has not, lists of doctors who are knowledgeable and open to discussion about this topic, who treat it, and then potentially be able to add to that. I took Accutane, I suffered from problems, I've had success fixing some of them. But I'm not reading 627 pages of comments to get up to speed to start being able to have a discussion.

Thanks!

Yes you are right, this thread has become colossal and organisation is key from now on. We are never going to be able to achieve direction in what seems like hundreds of areas of thought, theories and directions towards getting rid of the nasty side effects.

[removed]

On 01/06/2018 at 5:14 AM, marshl1 said:

Isotretinoin (cis-13 retinoic acid) usually composes of ~2% of the retinoids in your body. During treatment it composes of 98+% of the retinoids in your body, as you are taking it at 100x your usual vitamin A dose. This is how it hijacks retinol metabolism

1 hour ago, Fchawk said:

Isotretinoin (cis-13 retinoic acid) usually composes of ~2% of the retinoids in your body. During treatment it composes of 98+% of the retinoids in your body, as you are taking it at 100x your usual vitamin A dose. This is how it hijacks retinol metabolism

So this is why doctors put some patients on Vit A during treatment- fuck it only took about a year for that one to be answered - thank you!!

Can I also ask, for someone like yourself whos managed a good recovery- how is your facial moisture these days??

Regardlesss of what I take, what I dont take, what I eat etc - Im as dry as can be with no moisture, did yours ever come back?

Well, this thread has many years of trial and error. It is an online masterpiece. I remember a time (7-8 years ago) when posting negatives about Accutane on this forum was taboo and we were fighting with users and mods just to get our story out. That lasted a couple of years. People were ridiculed, getting banned left and right. One specific pro-Accutane female moderator who has since moved on. You have no idea the early struggle to get the word out and actually get a free and open discussion on the internet regarding such a renowned 'miracle' drug. Especially on this forum, which I think is the original pro/con Accutane forum in the world. Many battles and wars were fought here. Maybe word came down from Dan to let us be. Maybe just a younger more understanding group of moderators.

20 hours ago, TrueJustice said:

So this is why doctors put some patients on Vit A during treatment- fuck it only took about a year for that one to be answered - thank you!!

Can I also ask, for someone like yourself whos managed a good recovery- how is your facial moisture these days??

Regardlesss of what I take, what I dont take, what I eat etc - Im as dry as can be with no moisture, did yours ever come back?

Not really, I did start getting a bit of acne back, so I occasionally get a few pimples, but I am always pretty dry so I moisturise these days, or my skin gets kinda flaky, especially after hot showers

Bummer!!

well a full recovery for me would include some moisture back in the skin. I moisturise too but skin is thin, if I didnt know any better Id say it lacks collagen and sweat just pours out of me - I know many others have these issues but no one ever knows exactly why??

The hope was that Baxyl would bring moisture back but no such luck....

4 hours ago, TrueJustice said:

Bummer!!

well a full recovery for me would include some moisture back in the skin. I moisturise too but skin is thin, if I didnt know any better Id say it lacks collagen and sweat just pours out of me - I know many others have these issues but no one ever knows exactly why??

The hope was that Baxyl would bring moisture back but no such luck....

The dry skin may be from Accutane reducing sebum production rather than to do with collagen. Excess sebum harbours bacteria leading to acne, however sebum is also a natural moisturiser as it traps water, being an oily substance.

Youre absolutely correct - its sebum production I need.

So I google increasing it and stumble on this:

use medications that increase sebum production. These include, levonorgestrel, medroxyprogesterone, phenothiazines and testosterone. Avoid medications that can affect sebum production like - isotretinoin, antiandorgens and oestrogen

On 4/7/2018 at 3:29 PM, brendan452 said:

On 4/7/2018 at 7:01 AM, MonsterDiesel said:

Quite possibly i'll be on TRT for life. I spent 10+ years trying to raise my testosterone naturally. Tried everything; every supplement, diet, strategy- nothing worked. Even on Trt, I admit I cant seem to get my levels up to where they should be even using the highest dose. As if my body is metabolizing it faster. But im getting no sides. Still, i see improvements so it helps. Funny thing is, i can now tolerate a lot of supplements I wasnt able to before.

trt is just one step. Methylation another. Biotin is next. Just got tested for biotinidaze enzymes to see if theres a problem there.

What else does research shows that accutane messes with?
I-ve tested a lot over the years. Total was in upper 200+/low 300+. Free was always below lower range.

Let us know what your biotin test comes back as please that will be interesting

Tests are in. Meant to post this sooner. I remember reading that a deficiency is quantified as 10 or 25% or normal but I cannot find more information about this. I also had my biotinidase activity tested (finally) and it was normal.

Biotin

5/13/16

4/6/18

Vitamin B7 0.59ReferenceRange:0.05-0.83ng/mL

11 hours ago, TrueJustice said:

Youre absolutely correct - its sebum production I need.

So I google increasing it and stumble on this:

use medications that increase sebum production. These include, levonorgestrel, medroxyprogesterone, phenothiazines and testosterone. Avoid medications that can affect sebum production like - isotretinoin, antiandorgens and oestrogen

Interesting. The first one id be hesitant about using. The progesterone id only use if my blood levels were shown low, as it can have feminizing qualities. The testosterone would be the most attractive choice, but need on going monitoring (ie keeping estrogen levels in check, etc). This is assuming a doctor would prescribe it for such a reason, which may require a lot of doctor shopping.

When you think about it though, these aren't permanent solutions as they aren't affecting gene transcription, ie once you cease treatment, your sebum production may return to baseline. In this case, its not too much different than symptom management using a suitable heavy duty moisturiser every day, which wouldn't run the risk of side effects, but could be more inconvenient. However, assuming they work, the medications would be increasing the natural substance you need, whereas a moisturizer would be 'artificial'.