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Repairing the long-term damage from Accutane

 
MemberMember
397
(@calcified)

Posted : 05/23/2019 11:34 am

Does someone know why it's an anti androgen yet people are going bald ?

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MemberMember
359
(@dubya_b)

Posted : 05/24/2019 5:58 pm

On 5/23/2019 at 12:34 PM, Calcified said:

Does someone know why it's an anti androgen yet people are going bald ?

2 schools of thought on this.

 

1) It's a form of reflex hyperandrogenicity, where AR upregulation due to an anti-androgenic effect leads to increased shedding. Something similar is seen with finasteride. This effect can explain continued hair loss long after treatment has ceased.

 

2) It's a form of telogen effluvium, an effect often seen with chemotherapeutic/cytotoxic drugs. There have been people DXed with this pattern of hair loss after Accutane, but it is supposed to halt after cessation of the drug.

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MemberMember
299
(@macleod)

Posted : 05/24/2019 9:50 pm

Anyone seen this recent article? Thoughts?

https://www.bbc.com/news/health-47952076?fbclid=IwAR0T9cNbc98RiGmK0Fv6x49Wbn5YMPQtkROhZgRmcRM3oI745clm2kz7CWA

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MemberMember
6
(@mabbbs)

Posted : 05/25/2019 8:23 am

Did anyone conducta synovial fluid analysis test?

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MemberMember
1803
(@guitarman01)

Posted : 05/25/2019 1:58 pm

On 5/23/2019 at 11:34 AM, Calcified said:

Does someone know why it's an anti androgen yet people are going bald ?

For me I dont really relate it to traditional scalp hair loss like in mpb. In fact maybe Accutane even slowed down a receding hairline in myself. I'll never know.

What accutane did do was cause total diffuse hair loss throughout my entire body shortly after stopping treatment that never recovered.

Everything from eyebrows to leg and arm hair. it would just come out in clumps.

im not sure if Propecia is capable of this? to seperate the two.

Towards Dissecting the Pathogenesis of Retinoid-Induced Hair Loss: All-Trans Retinoic Acid Induces Premature Hair Follicle Regression (Catagen) by Upregulation of Transforming Growth Factor-beta2 in the Dermal Papilla

https://www.researchgate.net/publication/7787907_Towards_Dissecting_the_Pathogenesis_of_Retinoid-Induced_Hair_Loss_All-Trans_Retinoic_Acid_Induces_Premature_Hair_Follicle_Regression_Catagen_by_Upregulation_of_Transforming_Growth_Factor-beta2_in_the_

Hair loss (alopecia) is a consistent finding during vitamin A toxicity [57]. Excess RA also inhibits sebaceous gland function, as is exploited in the treatment of acne [8,9]. The results from these studies suggest that precise levels of retinoic acid (RA, active metabolite) are needed for optimal function of the hair follicle and sebaceous gland (pilosebaceous unit, PSU)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3237781/

Murine toxicology and pharmacokinetics of novel retinoic acid metabolism blocking agents.

Clinical signs of toxicity alopecia, scaly skin, and loss of body weight in the mice were observed during the study and the maximum tolerated dose was determined.

On a side note funny seeing the therapeuticwindow,

regulation, metabolism, homeostasis?

Or once the damage is done its done?

RAMBA drugs for treating intestinal inflammation and colon cancer

http://techfinder.stanford.edu/technologies/S11-283_ramba-drugs-for-treating-intestinal

 

 

Quote
MemberMember
24
(@recreant)

Posted : 05/26/2019 12:57 am

Throughout the 15 years of intermittent research into my Accutane sides I've gotten my hopes up many times thinking I'd finally figured it all out... only to discover I'd hit another dead end. However, I believe I may have finally identified a major element of my permanent Accutane issues:

Matrix Metalloproteinases (MMPs). Specifically MMP-2 & MMP-9. But mostly 9.

It's my belief that ever since I took Accutane my levels of MMP-9 have been increased. I don't know if there's something upstream of it that's causing it to be elevated but I feel it's at least a key player in a chain of events.

There are hundreds of interesting studies on MMP-9 out there but this is a link to some quick basic info on it: https://selfhacked.com/blog/mmp9/

Now, one of the ways Accutane is thought to possibly combat acne is that it actually inhibits MMP-9, but I feel for me there was some sort of, I don't know, rebound effect or something. Accutane gave me rosacea, seborrheic dermatitis, and folliculitis among other things, but Accutane is generally used to FIGHT these problems. So I've long observed Accutane has worked in reverse for me for some reason.

I won't bore you with a long rambling thing about how I came to suspect MMP-9, but I've decided to attack it with various supplements and it didn't take long to start feeling the best I've felt in years.

The supps I'm currently using:

Vitamin C
Vitamin E complex
Magnesium Glycinate
Zinc Sulfate
Ginkgo Biloba
Pycnogenol
Turmeric

 

My sides are:

Hairloss
Rosacea
Folliculitis
Meibomian gland dysfunction
Colitis
Gastric issues (most likely ulcers)
Increased depression and anxiety
Seborrheic Dermatitis
Permanent halitosis (not directly caused by Accutane, but likely associated)

 

All of these problems either have a direct link to MMP-9, or, from my research, a plausible tangential one.

I firmly believe that Accutane gave me stomach ulcers during my second round of treatment. I've often, oddly, associated this damage with my permanent folliculitis. Right around the time my folliculitis showed up as I was nearing the end of my second Accutane course, I noticed that I suddenly couldn't drink fruit juices or coke on an empty stomach. If I did I'd collapse to the floor in pain, feeling the acid inside me digesting the walls of my stomach. And anytime I drank something acidic or took Betaine HCL (Bad bad idea) my folliculitis would worsen. My experiment with ingesting Betaine HCL caused my scalp to coat my pillowcases with blood. The best supplement I had found to work back in the day was L-Glutamine - something that could heal my stomach lining. I've now discovered that L-Glutamine also inhibits MMP-9 (had to stop L-Glutamine, however, because it caused some temporary brain damage, most likely due to hyperammonemia).

Interestingly, as I've attempted to inhibit MMP-9, magically my breath has gotten about 40% less bad so far. I was totally confused at first, but then remembered reading about how some researchers believed that one avenue to halitosis could be gastric ulcers. For the longest time I had assumed my halitosis was from some lingering infection from a tooth abscess I had many years ago. I had an abscess for 2 months before I finally got a root canal done but about one month after developing it my breath started to get worse and worse. BUT now I can look back and remember that I was taking about 12 Advil a day for 60 days to deal with the pain. If I already had ulcers from Accutane, 12 Advil a day x 60 days would likely make those ulcers far worse and may very well be why my breath got messed up.

Anyway, even though I haven't been taking my supplements for long, I've observed a noticeable improvement in all of my symptoms with the exception of hairloss because I can't even measure that at this point. Accutane also thinned the diameter of every hair on my head but I won't be surprised if it all thickens up a bit since I swear that's what happened about a decade ago when I took Tetracycline for a year (Tetracycline is a powerful inhibitor of MMP-9).

I may have been damaged by Accutane in a unique way but if anyone has similar sides it might not hurt to test out an approach like mine. You probably already own some of these supplements since a lot of them are quite common.

 

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Mabbbs, Nanneparty, Mabbbs and 3 people reacted
MemberMember
397
(@calcified)

Posted : 05/26/2019 4:53 am

14 hours ago, guitarman01 said:

For me I dont really relate it to traditional scalp hair loss like in mpb. In fact maybe Accutane even slowed down a receding hairline in myself. I'll never know.

What accutane did do was cause total diffuse hair loss throughout my entire body shortly after stopping treatment that never recovered.

Everything from eyebrows to leg and arm hair. it would just come out in clumps.

im not sure if Propecia is capable of this? to seperate the two.

Towards Dissecting the Pathogenesis of Retinoid-Induced Hair Loss: All-Trans Retinoic Acid Induces Premature Hair Follicle Regression (Catagen) by Upregulation of Transforming Growth Factor-beta2 in the Dermal Papilla

https://www.researchgate.net/publication/7787907_Towards_Dissecting_the_Pathogenesis_of_Retinoid-Induced_Hair_Loss_All-Trans_Retinoic_Acid_Induces_Premature_Hair_Follicle_Regression_Catagen_by_Upregulation_of_Transforming_Growth_Factor-beta2_in_the_

Hair loss (alopecia) is a consistent finding during vitamin A toxicity [57]. Excess RA also inhibits sebaceous gland function, as is exploited in the treatment of acne [8,9]. The results from these studies suggest that precise levels of retinoic acid (RA, active metabolite) are needed for optimal function of the hair follicle and sebaceous gland (pilosebaceous unit, PSU)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3237781/

Murine toxicology and pharmacokinetics of novel retinoic acid metabolism blocking agents.

Clinical signs of toxicity alopecia, scaly skin, and loss of body weight in the mice were observed during the study and the maximum tolerated dose was determined.

On a side note funny seeing the therapeuticwindow,

regulation, metabolism, homeostasis?

Or once the damage is done its done?

RAMBA drugs for treating intestinal inflammation and colon cancer

http://techfinder.stanford.edu/technologies/S11-283_ramba-drugs-for-treating-intestinal

 

 

Interesting, thanks. Keeps pointing towards increased oxidation of Ra.

Quote
MemberMember
1803
(@guitarman01)

Posted : 05/26/2019 1:42 pm

Protein regulates vitamin A metabolic pathways, prevents inflammation

Date:
October 23, 2017
Source:
Case Western Reserve University
Summary:
Researchers have discovered how uncontrolled vitamin A metabolism in the gut can cause harmful inflammation.
A team of researchers from Case Western Reserve University School of Medicine have discovered how uncontrolled vitamin A metabolism in the gut can cause harmful inflammation
https://www.sciencedaily.com/releases/2017/10/171023131929.htm
Feb 11, 2019 -Gutbacteriacurb the production of thevitaminA metabolite retinoic acid to regulate immune activity and prevent pathogen colonization, researchers have found. The study, done in mice, was led by Mayara Grizotte-Lake atBrown Universityin Providence, Rhode Island, and published in the journal Immunity.

Role of epithelial cell intrinsic vitamin A metabolism in regulating immune function in the gut

we demonstrate that gut bacteria play a critical role in modulating retinoic acid (RA) levels and expression of vitamin A metabolic machinery in the intestinal epithelium.

http://grantome.com/grant/NIH/R01-DK113265-01A1

Continuing to look at this.

There could be a scenario where supplying a certain bacteria could be therapy,a certain lingering bacteria is a determinant, or both, but its definitely something to keep looking at.

Quote
MemberMember
1
(@nanneparty)

Posted : 05/26/2019 2:26 pm

13 hours ago, Recreant said:

Throughout the 15 years of intermittent research into my Accutane sides I've gotten my hopes up many times thinking I'd finally figured it all out... only to discover I'd hit another dead end. However, I believe I may have finally identified a major element of my permanent Accutane issues:

Matrix Metalloproteinases (MMPs). Specifically MMP-2 & MMP-9. But mostly 9.

It's my belief that ever since I took Accutane my levels of MMP-9 have been increased. I don't know if there's something upstream of it that's causing it to be elevated but I feel it's at least a key player in a chain of events.

There are hundreds of interesting studies on MMP-9 out there but this is a link to some quick basic info on it: https://selfhacked.com/blog/mmp9/

Now, one of the ways Accutane is thought to possibly combat acne is that it actually inhibits MMP-9, but I feel for me there was some sort of, I don't know, rebound effect or something. Accutane gave me rosacea, seborrheic dermatitis, and folliculitis among other things, but Accutane is generally used to FIGHT these problems. So I've long observed Accutane has worked in reverse for me for some reason.

I won't bore you with a long rambling thing about how I came to suspect MMP-9, but I've decided to attack it with various supplements and it didn't take long to start feeling the best I've felt in years.

The supps I'm currently using:

Vitamin C
Vitamin E complex
Magnesium Glycinate
Zinc Sulfate
Ginkgo Biloba
Pycnogenol
Turmeric

 

My sides are:

Hairloss
Rosacea
Folliculitis
Meibomian gland dysfunction
Colitis
Gastric issues (most likely ulcers)
Increased depression and anxiety
Seborrheic Dermatitis
Permanent halitosis (not directly caused by Accutane, but likely associated)

 

All of these problems either have a direct link to MMP-9, or, from my research, a plausible tangential one.

I firmly believe that Accutane gave me stomach ulcers during my second round of treatment. I've often, oddly, associated this damage with my permanent folliculitis. Right around the time my folliculitis showed up as I was nearing the end of my second Accutane course, I noticed that I suddenly couldn't drink fruit juices or coke on an empty stomach. If I did I'd collapse to the floor in pain, feeling the acid inside me digesting the walls of my stomach. And anytime I drank something acidic or took Betaine HCL (Bad bad idea) my folliculitis would worsen. My experiment with ingesting Betaine HCL caused my scalp to coat my pillowcases with blood. The best supplement I had found to work back in the day was L-Glutamine - something that could heal my stomach lining. I've now discovered that L-Glutamine also inhibits MMP-9 (had to stop L-Glutamine, however, because it caused some temporary brain damage, most likely due to hyperammonemia).

Interestingly, as I've attempted to inhibit MMP-9, magically my breath has gotten about 40% less bad so far. I was totally confused at first, but then remembered reading about how some researchers believed that one avenue to halitosis could be gastric ulcers. For the longest time I had assumed my halitosis was from some lingering infection from a tooth abscess I had many years ago. I had an abscess for 2 months before I finally got a root canal done but about one month after developing it my breath started to get worse and worse. BUT now I can look back and remember that I was taking about 12 Advil a day for 60 days to deal with the pain. If I already had ulcers from Accutane, 12 Advil a day x 60 days would likely make those ulcers far worse and may very well be why my breath got messed up.

Anyway, even though I haven't been taking my supplements for long, I've observed a noticeable improvement in all of my symptoms with the exception of hairloss because I can't even measure that at this point. Accutane also thinned the diameter of every hair on my head but I won't be surprised if it all thickens up a bit since I swear that's what happened about a decade ago when I took Tetracycline for a year (Tetracycline is a powerful inhibitor of MMP-9).

I may have been damaged by Accutane in a unique way but if anyone has similar sides it might not hurt to test out an approach like mine. You probably already own some of these supplements since a lot of them are quite common.

 

Hey man,

It is Nice to read that you finally have found something that helps you out.

Ive had three rounds of accutane and stopped at my third one because I just felt like a wrack.

However, since my last course of Accutane my life has actually been a drag and its now (3.5 years later) that I realize a lot of People suffer from post-accutane problems.

I have two question:

1) when do you take the supplements? Is there any order or time in the day?

2) do you take any diet-considerations into account? You skip any foods?

like to hear from you!

cheers

Quote
MemberMember
24
(@recreant)

Posted : 05/26/2019 10:26 pm

7 hours ago, Nanneparty said:

Hey man,

It is Nice to read that you finally have found something that helps you out.

Ive had three rounds of accutane and stopped at my third one because I just felt like a wrack.

However, since my last course of Accutane my life has actually been a drag and its now (3.5 years later) that I realize a lot of People suffer from post-accutane problems.

I have two question:

1) when do you take the supplements? Is there any order or time in the day?

2) do you take any diet-considerations into account? You skip any foods?

like to hear from you!

cheers

Hey,

I take the supplements twice a day, usually at breakfast and dinner.

Diet has a big impact on my Accutane sides but these supplements have allowed me to be less restrictive of what I eat. The best diet I've ever been on was the FODMAPS diet. But it's miserable and not meant to be done long term. I mainly try to keep sugar, dairy, and wheat to a minimum. I also seem to have fructose malabsorption and have to watch out I don't eat too much fruit.

I've now paused my use of Zinc Sulfate because I'm confused as to whether it helps or hurts. MMPs are Zinc dependent but weirdly I'd read some studies about Zinc Sulfate inhibiting them... which is good but seems odd. I've also seen studies saying Zinc chelators inhibit MMPs. That feels contradictory and I don't really understand how that works. Sigh.

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MemberMember
1
(@ronnie99)

Posted : 05/27/2019 7:18 am

Hi Guys,

After reading alot through this thread, I beleive that our core problem lies with the CRH (Corticotropin releasing hormone).

Have a quick read of this interesting article and I think many of you can relate to your symptoms you have including gut, depression, skin, erectile dysfunction etc. The second is a study of how Accutane dysregulates the Glucocosteroid negative feedback ultimately resulting in excess CRH.

 

Also retinoic acid is know to manipulate CRH and alter its effects, upregulate etc. Just have a quick read of the article below.

https://selfhacked.com/blog/why-your-health-problems-worsen-after-stress-the-role-of-crh/

https://www.nature.com/articles/tp201398

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MemberMember
397
(@calcified)

Posted : 05/27/2019 12:08 pm

Guitarman01 -

Another point, antibiotics help alot with the folliculitis, studies are saying or suspecting that antibiotics increase Ra, due to reduce Ra breakdown or increased conversion of retinol to Ra.

Folliculitis was my first side effect after treatment not long after treatment.

Quote
MemberMember
1803
(@guitarman01)

Posted : 05/27/2019 1:47 pm

1 hour ago, Calcified said:

Guitarman01 -

Another point, antibiotics help alot with the folliculitis, studies are saying or suspecting that antibiotics increase Ra, due to reduce Ra breakdown or increased conversion of retinol to Ra.

Folliculitis was my first side effect after treatment not long after treatment.

I think you might be thinking something else then me. I would say you dont need more retinoic acid. That would almost be like saying take some more accutane. You could maybe make a case for vitamin a processes that retinoic acid doesnt fulfill, like what I mentioned a few posts back (vision,spermatogenesis), but then you start to float back to the thought of long term retinoic acid storage blocking these processes. I haven't seen strong evidence of that possibility.

Quote
MemberMember
24
(@recreant)

Posted : 05/27/2019 3:14 pm

2 hours ago, Calcified said:

Guitarman01 -

Another point, antibiotics help alot with the folliculitis, studies are saying or suspecting that antibiotics increase Ra, due to reduce Ra breakdown or increased conversion of retinol to Ra.

Folliculitis was my first side effect after treatment not long after treatment.

Curious - when you first got folliculitis, did the severity of it wax and wane or was it more constant? I was always baffled because for the first couple years of getting mine it would get worse and worse for a few days then progressively get better, then back to worse, like clockwork.

Quote
MemberMember
45
(@cnb30)

Posted : 05/27/2019 6:22 pm

Im back with more updates from my now 2 month trial of little/no vitamin A and no dairy.

 

my gut is definitely doing significantly better (I can tell this as I have been feeling worse since accidentally having mold a couple days ago and am reminded that I constantly felt this way). Also, a lot of my mental and social side effects seem to have disappeared. I seem to have my mojo back most of the time, and no longer feel loopy, or mentally clogged up.

 

Also, Ive been taking Vitamin K as well as Ubiquinol CoQ10

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MemberMember
397
(@calcified)

Posted : 05/27/2019 9:18 pm

6 hours ago, guitarman01 said:

I think you might be thinking something else then me. I would say you dont need more retinoic acid. That would almost be like saying take some more accutane. You could maybe make a case for vitamin a processes that retinoic acid doesnt fulfill, like what I mentioned a few posts back (vision,spermatogenesis), but then you start to float back to the thought of long term retinoic acid storage blocking these processes. I haven't seen strong evidence of that possibility.

Im thinking a few things,

I get there's a window for Ra, too much equals bad, too little equals bad.

I find it interesting how some patients with skin diseases take it for years, and choose to. Adaption?

Antibiotics seem more effective after accutane for some reason. I get no acne at all on them.

Quote
MemberMember
397
(@calcified)

Posted : 05/27/2019 9:55 pm

6 hours ago, Recreant said:

Curious - when you first got folliculitis, did the severity of it wax and wane or was it more constant? I was always baffled because for the first couple years of getting mine it would get worse and worse for a few days then progressively get better, then back to worse, like clockwork.

Yeah it varies. Antibiotics help, probably not safe to take long-term.

Quote
MemberMember
1
(@nanneparty)

Posted : 05/28/2019 4:22 am

Hey guys,

I've been scrolling down this page for the last couple of days and I see a lot people having benefits with using a dairy-and wheat free diet.

I wonder what you guys think of Huel. It contains oats and is a product that is used to replace meals (most breakfast and lunch). It is powder which you have to mix with water/(almond) milk whatsoever. The product is vegan and has complete nutrition. It also has a gluten-free version, where they selected the oats to be sure it's not contamined with gluten during the fabrication process.

To see nutrional information, see the link: [removed], you have to scroll down below the page to see it's nutritional value etc.

Let me know what you guys think! If it's a good addition to a post-accutane diet it makes things a lot easier, because it is such a convenient product:)

Cheers,

Nanne

Quote
MemberMember
1
(@nanneparty)

Posted : 05/28/2019 10:18 am

15 hours ago, cnb30 said:

Im back with more updates from my now 2 month trial of little/no vitamin A and no dairy.

 

my gut is definitely doing significantly better (I can tell this as I have been feeling worse since accidentally having mold a couple days ago and am reminded that I constantly felt this way). Also, a lot of my mental and social side effects seem to have disappeared. I seem to have my mojo back most of the time, and no longer feel loopy, or mentally clogged up.

 

Also, Ive been taking Vitamin K as well as Ubiquinol CoQ10

Hey man,

Nice to see that this stuff works out for you. I got a question:

1) Do you still eat wheat? And rice?And how does your weekly diet looks like generally? (if you want to post that:P)

2) And can you tell me which brand you take for the supplements? Can you post a link online?

Cheers!

Quote
MemberMember
6
(@owen2000)

Posted : 05/28/2019 5:16 pm

I know this sounds really strange but has anybody not considered asking if they can have a liver transplant ? Just random suggestion.

Quote
MemberMember
299
(@macleod)

Posted : 05/28/2019 11:35 pm

6 hours ago, Owen2000 said:

I know this sounds really strange but has anybody not considered asking if they can have a liver transplant ? Just random suggestion.

It wouldn't make any logical sense,the liver has evolved from countless years of humans eating things that they are not supposed to. Even decades long alcoholics can make a decent recovery once drinking is stopped, even though the outer liningsmay be permanently scarred. This is why the 'stored Vitamin A' theory doesn't seem plausible to me. Retinoid toxicity is more complicated than that.

There was one user on here years ago that had a biopsy preformed during a different routine surgery, he claimed the doctor saw "unusual perforations" in the microscope, but that's just one anecdotal claim. Procedure is super invasive. I know many of us with neurological ailmentswish we could check our cerebrospinal fluid, but even a spinal tap is too invasive.

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MemberMember
1804
(@truejustice)

Posted : 05/29/2019 5:11 am

11 hours ago, Owen2000 said:

I know this sounds really strange but has anybody not considered asking if they can have a liver transplant ? Just random suggestion.

Have you exhausted things like fixing HPA axis??

This requires working with a specialist etc. Im assuming youve exhausted this avenue with the suggestion of a liver transplant?

Quote
0
(@Anonymous)

Posted : 05/29/2019 5:12 am

On 5/25/2019 at 8:20 AM, macleod said:

As always, thanks for posting Macleod.

Quote
MemberMember
1
(@jellyy)

Posted : 05/29/2019 5:40 am

Someone commented in this link [removed]

"Astudy about vitamin a depletion in a old man who had hypervitaminosis A. It showed that RBP was greatly inhibited by protein deficiency and that eating 120 grams a protein a day causes RBP and vitamin a serum to rise. While on the high protein diet (58 days) they estimated the daily vitamin a being depleted was 226,000 iu daily.

https://www.gastrojournal.org/article/0016-5085(82)90132-9/pdf "

do you guys think this can help?

Quote
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MemberMember
397
(@calcified)

Posted : 05/29/2019 10:25 am

On 5/29/2019 at 4:40 PM, jellyy said:

Someone commented in this link [removed]

"Astudy about vitamin a depletion in a old man who had hypervitaminosis A. It showed that RBP was greatly inhibited by protein deficiency and that eating 120 grams a protein a day causes RBP and vitamin a serum to rise. While on the high protein diet (58 days) they estimated the daily vitamin a being depleted was 226,000 iu daily.

https://www.gastrojournal.org/article/0016-5085(82)90132-9/pdf "

do you guys think this can help?

I'm also curious if anyone has tried a very high protein diet, and how it went?

Quote