@thomas76 Interesting, three years after accutane, I actually got abnormal high level of ferritin (527 ug/l). I see merit in your interpretation of how retinoid acid affects our body. Vitamin A is crucial for leydig cells as well. Isotretinoin must have altered the body's ability to handle vitamin A in a big way and victims exhibit both symptoms of Vitamin A deficiency and toxicity. What's your take on the matter?

@hermie09 WE HAVE TO PUSH FOR PROPER RESEARCH. WHATEVER IT TAKES.

@thomas-whitley82gmail-com I am in the same shoes as you are. Exactly the same problem.

Im finding the sulforaphane rich broccoli sprout pills do an excellent job of pulling accutane out of the cell nucleus and into circulation, but a logjam ends up occurring in the liver and I needed to stop. Seeing the doc today about getting a Udca prescription to eliminate the liver logjam. If doc wont cooperate Ill order tudca online. Once I have either Udca or tudca Ill resume the broccoli sprouts. I think seaweed can be helpful also but its not nearly as important as broccoli sprouts and Udca/tudca. Will keep the board posted.

Posted by: @bluewhalie

@thomas76 Interesting, three years after accutane, I actually got abnormal high level of ferritin (527 ug/l). I see merit in your interpretation of how retinoid acid affects our body. Vitamin A is crucial for leydig cells as well. Isotretinoin must have altered the body's ability to handle vitamin A in a big way and victims exhibit both symptoms of Vitamin A deficiency and toxicity. What's your take on the matter?

high ferritin is from a copper deficiency

My biofeedback machine has consistently detected low iron and copper. RLS is one of the major issues for me. Iron and calcium counteract RLS. Magnesium seems to make RLS worse for me.
doc didnt cooperate on the Udca so tudca should arrive tomorrow.

Ive had various theories over the years. Currently my theory is that accutane permanently damages the gut, which causes chronic overproduction of serotonin, which causes Ibs-d, which leads to chronic water loss, which leads to chronic systemic dehydration. Doc appointment is Monday, and trying for generic zofran. Printed all kinds of info supporting its use for Ibs-d. fingers crossed.

There was study done on rats in 2022 showing that testosterone levels decrease while luteinizing hormone increases with the use of isotretinoin. Luteinizing hormone is produced by the pituitary gland so we can rule out that there is anything wrong before the production of testosterone in the Leydig cells since luteinizing hormone stimulates the production of testosterone in the Leydig cells. The question becomes, what goes wrong on a cellular level for the leydig cells.

At this point we have no conclusive evidence that isotretinoin is still in the body. I am not sure why there are people on here with strange theories on copper deficiency as a result of isotretinoin still being in the body or in cell nuclei. The deepest epigenetic cleanses happen from doing extreme water fasting. If you really think that isotretinoin is in the cell nuclei, your best bet would be to try going something like 20 days with only water doing a water fast. There are people that have healed themselves from post finasteride syndrome through water fasting for 20 days however the biological mechanisms are different. changes from finasteride are thought to be more maleable and result of 5 alpha reductase being inhibited with little to no apoptosis. In the case of Isotretinoin, many believe that full blown apoptosis is happening to many critical types of Stem Cells, most notably the Leydig Cells. Isotretinoin is thought to be out of the system within about a day after ingesting it. I tried going about 15 days without food on a water fast and while there was an initial spike of testosterone after refeading, it doesn't last long.

We do not know for sure that there is full blown apoptosis in the leydig cells because it hasn't been proven scientifically that there is apoptosis. It might be that something else goes wrong in the leydig cells that would be even harder to detect than apoptosis. There could be something that goes wrong epigenetically at a cellular level that makes the production of testosterone inefficient. This is also not proven scientifically but those are essentially the two possibilities as to what has been altered since we know now that there is nothing wrong with the pituitary gland.

They hinted in this study with rats that there is apoptosis of the Leydig cells although there was no quantitative data collected on this.

"It was found that 13-cis-retinoic acid induced almost complete cessation of spermatogenesis and produced alterations in the cytoplasm of Leydig cells."

'These findings were similar to other studies which found that fish oil in obese male mice could improve sexual hormones synthesis by increasing the number of Leydig cells and diminishing apoptosis then stimulating the testosterone biosynthesis through the adenyl cyclase, cyclic AMP, protein kinase A and splicing factor-1 pathways."

I have been taking fish oil pills for about two weeks and some of my acne has returned amazingly. Not a whole lot, just a little bit when I used to have severe acne. I would gladly welcome my acne back with these terrible "side effects since that means these other pathways would have experienced repair.

There is some recent experimentation that has gone on with leydig cells transplantation where leydig cells are inserted into the testicles for male hypogonadism but of course this operation is still extremely controversial and years away from being a medical procedure available to the public.

Dear Indy,

I understand that you have been experiencing long-term side effects from taking Roaccutane (Accutane) and you are seeking advice on supplements, diet, or any other means to help repair the damage caused.

1. Consult a Healthcare Professional: It's advisable to consult with a healthcare professional who specializes in dermatology or post-Accutane side effects. They can assess your specific situation, conduct tests if need, and provide appropriate guidance and treatment options.

2. Maintain a Healthy Lifestyle: Focus on maintaining a healthy lifestyle to support your overall well-being. This includes eating a balanced diet, staying hydrated, engaging in regular exercise, and managing stress levels.

3. Omega-3 Fatty Acids: Omega-3 fatty acids, found in fish oil or flaxseed oil supplements, may help with inflammation and overall skin health. However, consult with a healthcare professional before starting any new supplements.

4. Antioxidant-Rich Diet: Include a variety of fruits, vegetables, and whole foods in your diet. These are rich in antioxidants that may support overall health and potentially aid in the healing process.

5. Adequate Sleep: Ensure you are getting enough quality sleep each night as it plays a crucial role in overall health and recovery.

6. Homeopathy: While you mentioned trying homeopathy, it's important to have realistic expectations. Homeopathic treatments may work for some individuals, but scientific evidence supporting their effectiveness is limited. It's recommended to discuss this approach with a qualified homeopath.

Remember, every individual is unique, and the effectiveness of treatments can vary. It's essential to work closely with healthcare professionals who can provide personalized guidance based on your specific situation.

Take care and continue your journey towards healing and recovery.

Disclaimer: This response does not substitute professional medical advice. Always consult a healthcare professional for personalized guidance and recommendations.

I wish I could tolerate fish oil. I suspect the fish oil increased your systemic cholesterol levels, which increased your testosterone, which increased sebum production.
ibs-d and gallbladder issues have been issues for years post accutane. Will hopefully obtain a generic levsin rx from doc on 6/1. Havent yet been prescribed ondansetron. She said I had to try loperamide first. Loperamide is worthless. If levsin works then ondansetron may not be needed.

if the drug is trapped in the body, maybe the gallbladder is the bottleneck that keeps it trapped. Bile flow is crucial for whole body detox. If the gallbladder and bile ducts are constantly constricted, the body would have a hard time removing foreign toxins. Relax the bile ducts and gallbladder with a drug such as levsin and then the body can detox much easier. Hopefully will have a positive update the first week of June. Godspeed.

Posted by: @Thomas76

I wish I could tolerate fish oil. I suspect the fish oil increased your systemic cholesterol levels, which increased your testosterone, which increased sebum production.
ibs-d and gallbladder issues have been issues for years post accutane. Will hopefully obtain a generic levsin rx from doc on 6/1. Havent yet been prescribed ondansetron. She said I had to try loperamide first. Loperamide is worthless. If levsin works then ondansetron may not be needed.

if the drug is trapped in the body, maybe the gallbladder is the bottleneck that keeps it trapped. Bile flow is crucial for whole body detox. If the gallbladder and bile ducts are constantly constricted, the body would have a hard time removing foreign toxins. Relax the bile ducts and gallbladder with a drug such as levsin and then the body can detox much easier. Hopefully will have a positive update the first week of June. Godspeed.

It is thought that isotretinoin only remains in the body for about a day after ingesting it. There isn't any evidence that isotretinoin remains trapped in the body. I wouldn't blindly put your faith into the idea that isotretinoin is stuck in the body without any scientific evidence that it is trapped in the body.

Accutane is fat soluble. There is plenty of scientific evidence that fat soluble toxins can remain trapped in the body for years after use.
If there are any Water soluble metabolites of accutane, they absolutely are gone within a day. The fat soluble metabolites remain.
One example is when people lose weight. When the fat is burned, stored fat soluble toxins are released, and many people can reexperience these fat soluble toxins as they are released into circulation.

Posted by: @tryingtohelp2014

Posted by: @bluewhalie

@thomas76 Interesting, three years after accutane, I actually got abnormal high level of ferritin (527 ug/l). I see merit in your interpretation of how retinoid acid affects our body. Vitamin A is crucial for leydig cells as well. Isotretinoin must have altered the body's ability to handle vitamin A in a big way and victims exhibit both symptoms of Vitamin A deficiency and toxicity. What's your take on the matter?

high ferritin is from a copper deficiency

Look at you, what has it been 5 years? Still going on about copper huh? You have played this game from a to zinc. Why dont you get with a copper expert if you are so convinced? You should get a 24 hr urine copper test if you havent. Retinods are capable of producing the same protein that binds copper just like zinc, especially in the liver, but that could mean the copper is building up where it shouldnt. You should look into that with your low levels. You would have been more convincing realizing something after 5 years, instead you are still trying to convince yourself.

My biofeedback machine often indicates low hemoglobin. I believe copper is antagonistic toward zinc and selenium and helps with iron absorption and utilization. Ive never been a big fan of zinc or selenium, but iron and copper are two minerals my body has always preferred.
Ive always felt like my pelvic area is in a big tight knot, with excessive tension that never goes away. I believe this excess tension is all throughout the gut and gallbladder as well, which causes the Ibs-d and chronic bile flow and gallstone issues. The hope is that levsin can relax all of these areas and help with bile flow. Fingers crossed.

So I was wondering if any one on here was on TRT(Testosterone replacement Therapy)? What sort of results you have had with it? Has any one had their blood tested for hormone testosterone levels on here?

Havent tried HRT

I suspect youd still be left with gut dysbiosis and probably copper issues if you factor everything in that people talk about on here.

prob other stuff too

Posted by: @VanceAstro

Regarding IBS/SIBO/Dysbiosis issues induced by Isotretinoin...it seems that the matter is much more serious than it might seem at first.

I recommend to all of you the following study: Severe Acne in Female Patients Treated with Isotretinoin is Associated with Dysbiosis and its Consequences

Isotretinoin is associated with dysbiosis, malabsorption (with visceral fat decrease) and signs of dysimmunity. Symptoms develop more than 20 years after the intake of the medication taken at usual range and duration. A facilitating role of Propionibacterium acnes cannot be excluded. Isotretinoin is known to impair stem cells renewal and TLR2 expression in the mucosa of the small gut. These pharmacological effects may induce the progressive atrophy of the jejunal mucosa and its long-lasting consequences. No therapy is available yet. Patients, prescribers and authorities should be aware of this adverse event which incidence is high (2.6% of outward gastroenterological consultations) especially when multi-annual surveillance for several years are expected.

I contacted the author of the study who claimed that the effects of Isotretinoin in the male population will be the same.

He also mentioned that Isotretinoin-induced malabsorption/digestive issues are related to the apoptosis of stem cells and that the use of antibiotics normally used to treat SIBO/IBS is useless.

So I guess it's really "game over" (at least with the current state of knowledge) for people who suffer from gastrointestinal issues after taking Isotretinoin.

As a consolation, I will only add that he also mentioned that you can at least "try" to repair the small intestine mucosa with a ketogenic diet and added that you should avoid nickel-rich foods that are very inflammatory on the thin mucosa.

In addition, let me just mention that from what I have been able to find, it seems that in the case of damaged/thinned mucosa of the small intestine (I assume that this is the case in 99% of people suffering from "IBS" after taking Isotretinoin) it would be worth trying L-arginine & Zinc L-carnosine & n-3 fatty acids (see studies below):

https://pubmed.ncbi.nlm.nih.gov/22545735/ L-arginine

https://pubmed.ncbi.nlm.nih.gov/22456439/ n-3 fatty acids

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856764/ Zinc carnosine

 

 

 

 

Interesting study. Did the author happen to mention the reason he thought a ketogenic diet was the best approach to healing the gut?

I've personally found L-Glutamine and Sodium Butyrate to be really helpful. I don't know much about the keto diet but after some quick research I did find this which was interesting: https://news.mit.edu/2019/ketones-stem-cell-intestine-0822

Posted by: @Recreant

Interesting study. Did the author happen to mention the reason he thought a ketogenic diet was the best approach to healing the gut?

I've personally found L-Glutamine and Sodium Butyrate to be really helpful. I don't know much about the keto diet but after some quick research I did find this which was interesting: https://news.mit.edu/2019/ketones-stem-cell-intestine-0822

Unfortunately, he did not mention why he specifically recommends the ketogenic diet (maybe he was familiar with the study on ketone bodies you posted above). He also did not answer any more of my subsequent questions.

And I agree that the study is very interesting, it's the first of its kind to show that Accutane causes permanent "IBS/SIBO/Dysbiosis/Malabsorbtion syndrome" by thinning the mucosa of the small intestine (as we can see, Accutane "dries out" more than just the eyes and skin). I assume that in most people suffering from unspecified "IBS" after Accutane it is this mechanism that causes it.

Personally, over the years I tried Rifaximin (2 courses), Nitazoxanide, Fluconazole - no change. It turns out he was right (at least in my case) when he mentioned that conventional antibiotics etc. simply don't work in Accutane-induced "IBS".

And since I am aware that at the moment there is no effective treatment, I will be satisfied with even a slight improvement, because I do not believe that I will be able to return to the original state (before I took Accutane).

If you guys have any other ideas regarding the repair of small intestine mucosa, please feel free to suggest them.

Below is a list of things I'm experimenting with right now:

L-Arginine
L-Glutamine
n-3 fatty acids
Zinc carnosine
Sodium Butyrate
Partially Hydrolyzed Guar Gum

Posted by: @VanceAstro

Posted by: @Recreant

Interesting study. Did the author happen to mention the reason he thought a ketogenic diet was the best approach to healing the gut?

I've personally found L-Glutamine and Sodium Butyrate to be really helpful. I don't know much about the keto diet but after some quick research I did find this which was interesting: https://news.mit.edu/2019/ketones-stem-cell-intestine-0822

Unfortunately, he did not mention why he specifically recommends the ketogenic diet (maybe he was familiar with the study on ketone bodies you posted above). He also did not answer any more of my subsequent questions.

And I agree that the study is very interesting, it's the first of its kind to show that Accutane causes permanent "IBS/SIBO/Dysbiosis/Malabsorbtion syndrome" by thinning the mucosa of the small intestine (as we can see, Accutane "dries out" more than just the eyes and skin). I assume that in most people suffering from unspecified "IBS" after Accutane it is this mechanism that causes it.

Personally, over the years I tried Rifaximin (2 courses), Nitazoxanide, Fluconazole - no change. It turns out he was right (at least in my case) when he mentioned that conventional antibiotics etc. simply don't work in Accutane-induced "IBS".

And since I am aware that at the moment there is no effective treatment, I will be satisfied with even a slight improvement, because I do not believe that I will be able to return to the original state (before I took Accutane).

If you guys have any other ideas regarding the repair of small intestine mucosa, please feel free to suggest them.

Below is a list of things I'm experimenting with right now:

L-Arginine
L-Glutamine
n-3 fatty acids
Zinc carnosine
Sodium Butyrate
Partially Hydrolyzed Guar Gum

I'm lucky in that while I have a ton of Accutane-induced health problems such as hairloss, thinned hair, folliculitis, seborrheic dermatitis, rosacea, stomach ulcers, dysbiosis, malabsorption, and colitis, I can actually control most of this really really well if I try hard. But the problem is I have to be very disciplined with what I eat.

If I avoid carbonated drinks, alcohol, wheat, dairy, tomatoes, eggs, peanuts, high histamine foods, and the additive sodium benzoate then I feel really good. The problem is I love Redbull and lasagna. 🙁

Have you tried avoiding histamine? It can be a real problem in sibo etc. and damaging. I've also been planning on experimenting with a low sulfur diet to see if anything happens. Before seeing the study you posted, I had wondered if Accutane could cause sibo and dysbiosis by messing with the body's ability to process sulfur through the alteration of the cystathionine beta-synthase enzyme. Since alterations to the CBS enzyme is likely how Accutane screws with peoples' homocysteine levels, I thought maybe it was possible. Maybe you've already read about it but I find the theory that in some cases sibo could be the body's workaround to supplying itself with enough sulfate to be interesting: https://www.eonutrition.co.uk/post/sulfate-iv-chronic-sibo-gut-dysbiosis-as-a-protective-adaptation-to-supply-sulfate

I know that when I eat a bunch of sulfur-containing foods at the same time I tend to immediately get diarrhea. And I know for sure I have a big problem with Helicobacter Pylori which is a sulfur fixing bacteria. So I'm planning to test out a low sulfur diet for a bit but it's hard because I'm currently trying to lose weight and relying on eating a lot of meat.

The pharmaceutical approach was the wrong approach for me. No surprise there. Currently Im doing dr Christophers xinfx along with a basic probiotic. Xinfx is a herbal supplement designed to support the lymphatic system. I tried xinfx before and started feeling significantly better, but then got worse within a week. That was without a probiotic. I believe the xinfx was pulling stored accutane thru the lymph to the gut, where it would wipe out good gut bugs and increase beta glucuronidase, which would recycle accutane back into my system, leaving me feeling worse.
This time around Im including a probiotic with the xinfx to prevent beta glucuronidase and complete the detox process. Definitely not healed but so far so good with this supplement combo. Will keep the board posted. Godspeed.

Trt is a bad idea as the testes will shrink, and you also have to try to control aromatase as well.
dr Robert Morse is big on the lymphatic system being key for all kinds of health issues and right now I think the guy is right.

Something worth mentioning just for the sake of looking at everything. Apparently, Roche was looking at Trialing Biotin to combat Accutane side effects.

Biotin controls intestinal stem cell mitosis and host-microbiome interactions

Evaluation of biophysical skin parameters and hair changes in patients with acne vulgaris treated with isotretinoin, and the effect of biotin use on these parameters

Isotretinoin and neuropsychiatric side effects: Continued vigilance is needed

Isotretinoin has been shown to be associated with a decrease of biotinidase. This suggests that isotretinoin could decrease biotinidase and therefore biotin levels, leading to depression. Roche previously planned a clinical trial to supplement patients treated with isotretinoin with biotin in order to decrease side effects, which in addition to skin effects, include depression.

I emailed Bremner and he got back to me, confirming a trial of Biotin was planned by Roche to combat sides.

Remain skeptical as always.

The problem with the roche mentality is they pinpoint one very small, specific aspect of accutane and declare that that one little aspect must be responsible for all of its horrible effects. They ignore the big picture.
Ive realized through experience that anything isolated does more harm than good, whether it be a drug or a supplement. The healthiest pills for the human body include whole herbs, probiotics, and/or whole beef organs. The human body is an organic entity that requires wholesome organic materials to function optimally. Throwing in synthetic isolates is like ok tossing a wrench in the works.
Guitarman in the past talked of the importance of the microbiome in all of this and I definitely agree the microbiome is huge.

My current theory is all of accutanes negative effects stem from one central effectchronic skin dehydration. Restore skin hydration and all the other secondary negative effects subside as well. Below is my current protocol. Will keep the board posted.
Daily emollient capsules

Long term

Aloe Vera

Coconut oil

Short term

Beef bone

Astragalus

Avena sativa

Marshmallow

irish sea moss

Posted by: @Thomas76

My current theory is all of accutanes negative effects stem from one central effectchronic skin dehydration. Restore skin hydration and all the other secondary negative effects subside as well. Below is my current protocol. Will keep the board posted.
Daily emollient capsules

Long term

Aloe Vera

Coconut oil

Short term

Beef bone

Astragalus

Avena sativa

Marshmallow

irish sea moss

It would be very helpful if you also tell us how will you implement these things, do they all come in capsules? Any dose you will follow?