Vitiligo - What's the Bio-Energetic view on this strange autoimmune condition??

[Blossom]

Thanks for the kind words @BigShoes, @frannybananny and @Peatress. I suppose we just all do what we have to do and later deal with the consequences. All I knew is those people on vents were victims like the rest of us and deserved a fighting chance. It was definitely like being at war though and I’m getting too old for that type of role.

 

[BigShoes]

@cs3000 this post was awesome, thanks... the paper is pretty hard to follow, I'm trying to get my head round it fully. But it has confirmed my suspicions that it is principally a mitochondrial / energy problem.

I was always under the assumption that if I got myself out of the stressed metabolism state (relying on thyroid and healthy glucose oxidation rather than adrenals / FFA) that I would be able to halt it's progression (this has been easier said than done in itself), but was certain that an additional X factor would be required if I were to ever see re-pigment...

Very interesting papers. Thanks a tonne.

 

[cs3000]

@cs3000 this post was awesome, thanks... the paper is pretty hard to follow, I'm trying to get my head round it fully. But it has confirmed my suspicions that it is principally a mitochondrial / energy problem.

I was always under the assumption that if I got myself out of the stressed metabolism state (relying on thyroid and healthy glucose oxidation rather than adrenals / FFA) that I would be able to halt it's progression (this has been easier said than done in itself), but was certain that an additional X factor would be required if I were to ever see re-pigment...

Very interesting papers. Thanks a tonne.

np , what are you trying for it next? the quercetin can come with problems but it covers all the related mechanisms. so im curious on that if u decide to test it for a while
also estrogen typically increases melanin production. but when it's at an extreme the contribution to damage outweighs that by increasing oxidative stress / h2o2
so your high estrogen is contributing either as a main cause or extra damage

Estrogens Can Contribute to Hydrogen Peroxide Generation and Quinone-Mediated DNA Damage in Peripheral Blood Lymphocytes from Patients with Vitiligo

To date there is ample in vivo and in vitro evidence for increased epidermal and systemic hydrogen peroxide (H2O2) levels in vitiligo, which can be re…

www.sciencedirect.com

I wonder if quercitin might affect conditions opposite of vitiligo, namely more freckles and odd brown splotches popping up on arms. Perhaps that is just sun damage from younger years but something has exacerbated this condition and no amount of zinc sunscreen can prevent more from coming up. Ideas anyone? I have the Heliocare + nicotinamide that my Derm recomended but it just keeps me awake at night.

yeh id think so but guessing it would be a negative effect if there is dysfunction in the opposite way, increasing melanin further.

 

[CastorTroy]

@cs3000 Based on the mitochondria/atp energy issue linked with vitiligo, shouldn't red light treatment help with that?

 

[frannybananny]

np , what are you trying for it next? the quercetin can come with problems but it covers all the related mechanisms. so im curious on that if u decide to test it for a while
also estrogen typically increases melanin production. but when it's at an extreme the contribution to damage outweighs that by increasing oxidative stress / h2o2
so your high estrogen is contributing either as a main cause or extra damage

Estrogens Can Contribute to Hydrogen Peroxide Generation and Quinone-Mediated DNA Damage in Peripheral Blood Lymphocytes from Patients with Vitiligo

To date there is ample in vivo and in vitro evidence for increased epidermal and systemic hydrogen peroxide (H2O2) levels in vitiligo, which can be re…

www.sciencedirect.com

yeh id think so but guessing it would be a negative effect if there is dysfunction in the opposite way, increasing melanin further.

I never heard that quercitin increased melanin. Guess I will research it because quercitin is good for so many other things!

 

[BigShoes]

@Blossom @PopSocket - without wishing to start a storm / heated debate here, I've just been reading about VitA toxicity on the Grant Genereux thread (I know I'm late to the party).

I came across a very interesting comment (#613) by user Brother John in the GG thread that got me thinking (emphasis my own):

The experiment that involved mice and Vitamin A and Vitamin D that was reported in this thread was sort of tragic comedy. The mice that did the best got no A or D.... Yeah right! The mice without the supplements did the best health wise.

Extrapolating vitamin D information from mice to humans seems very odd. Mice have fur, their vitamin D processes must be different from humans. The other idea that was comedic to me was "Ratio's of Vitamin A to D" Does anyone really believe they have that one figured out...Variables include: Types of A and D, method of delivery, rate of absorption, and finally the testing methods of verifying the ratio within the body.... But all that comes After someone decides somehow what the correct ration is.......

The one very interesting idea from that experiment was that A and D compete for absorption. That was interesting to me because another poster said a Dr was getting good results with treating auto immune disease with massive amounts of D. So my question: Is the D really helping or is it blocking the absorption of A and helping via acting as a prophylactic.

Earlier in this thread, I mentioned the study I had read where 35,000 IU of vitamin D per day was given (for 6 months) to 16 vitiligo patients, resulting in good re-coverage (but not consistent across all patients):

35,000 IU vitamin D daily for 6 months helped ALL psoriasis suffers (106 ng) – Brazil March 2013 | VitaminDWiki

Science-based Vitamin D

vitamindwiki.com

A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis

Autoimmunity has been associated with vitamin D deficiency and resistance, with gene polymorphisms related to vitamin D metabolism frequently described in affected patients. High doses of vitamin D3 may conceivably compensate for inherited resistance ...

www.ncbi.nlm.nih.gov

I am trying to think about what changed when I first was diagnosed with vitiligo, and what my diet was like at the time:
- I had been at university for one year - horrible diet of: beer, pasta, tomato sauce, low quality meats (cured, sausage, chicken breast), LOTS of cereal grains etc. - I had been certain that my diet and lifestyle (coupled with the stress situations) was what caused it.
- At the same time, it was at university when I first started taking multi-vitamins - I believe 6000 IU of vA per pill. I had never taken these before, but started to because I knew my diet was very deficient.

I have asked around this forum (and Danny R) about why vitamin D in these doses may cause re-pigmentation. I basically was told:
EITHER (1) fat solubles in high does can be immuno-suppressing (I don't have a source), so a huge dose of D is likely down-regulating the immune system, and hence the immune response.
OR (2) vitamin D is involved in a load of complex processes. Increasing its availability for those chronically deficient may have jump-started some dormant processes.

Both seem plausible, but I can neither confirm nor deny. However, as Brother John was saying above - perhaps the huge amounts of vitamin D were blocking the absorption / use / damage of the vitA ?? Allowing the tissue autoimmunity to restore ?? This is strange though - why would some get eczema, or psoriasis, but some get vitiligo... difficult to say.

@Blossom - at risk of derailing the thread and turning it into a vA debate, are you still on a low vA diet? Have you noticed any changes in vitiligo since?

It's a very interesting theory...

 

[Blossom]

@BigShoes, I’ve been mindful of my A intake for 5 years but developed the white patches after being low A for a couple years. I was strict for the first 1.5 years and after that I have generally stayed low to moderate in my intake and have not taken A supplements. One thing for certain for me is that my D levels improved dramatically when I stopped taking VA supplements and took a break from consuming much in my diet for quite a while. I don’t think it’s an absolute toxin for everyone but I do think many of us who have supplemented and eaten lots of it for many years probably have plenty in storage and possibly too much which generally goes unrecognized. Our modern food environment especially those who are health conscious and take supplements with A (which didn’t exist for most of history) is a big reason for this situation. A lot of people do not get enough sun/natural light either. I suppose that’s a long winded way of saying low A didn’t prevent it from happening to me. It was helpful in many ways especially helping my D levels and thyroid but not a panacea that solved everything and gave me mythical perfect health.

 

[Blossom]

Here’s a picture of mine from today.

 

[BigShoes]

Hi @Blossom - thank you for this, you look beautiful. And thank you for sharing your experience. I did have some more thoughts on this though - it would be great to know your thoughts too. See below:

I've been reading further into the vitamin A toxicity theory, and just spoke with Grant (Genereux) directly, asking if he'd seen some information correlating vA toxicity and vitiligo. I was personally skeptical that there was a link - why wouldn't I get eczema / psoriasis like others (which are apparently caused by vA according to the theory)? Why vitiligo? Still - the body can respond in funny ways, who knows...

Grant said to me (which was news to me): "it's quite well known that vit A toxicity can cause vitiligo. Very sadly, there are many young people in Africa who take accutane (retinoic acid) to specifically induce this condition to make their skin "white"..."

I did some more searching, and found the following:
- Vitiligo Appearing after Oral Isotretinoin Therapy for Acne

A study showing that vitiligo occurred in *some* patients following the use of accutane. An interesting excerpt from the article:

"Thyroid function test initially showed low TSH, 0.177 uIU/L (normal range: 0.27-4.2), and normal levels of free T3, 6.11 pmol/L (2.8- 7), and free T4, 15.7 pmol/L (12-22). Three months later, TSH was high, 9.61 uIU, and normal free T3 (4.7 pmol/L) and free T4 (12.2 pmol/L) and thyroid antibodies were positive; thyroid peroxidase antibodies were 157.59 IU/mL (normal range: 0-5.6) and thyroid thyroglobulin antibodies were 66.09 IU/mL (normal range: 0-4.11). She was started on thyroxine and followed up at the medical clinic."

Very interesting to me (and tragic)... basically: use of accutane led to elevated TSH and severe thyroid autoimmunity, when thyroid function was previously normal. This was in the patient who experienced onset of vitiligo.

Now, I have NEVER believed the mainstream view of autoimmunity. I just don't buy that the immune system randomly decided to attack the body. But I also found Ray's theory to be lacking - his theory of autoimmunity in the thyroid (to my understanding) was basically that:
(1) the thyroid function is low / sluggish
(2) Pituitary increases TSH to kick-start the sluggish thyroid, which is in itself an inflammatory hormone.
(3) other stress hormones and estrogen rise as a result of the stressed metabolism too, which are also inflammatory.
(4) The thyroid antibodies appear as a RESPONSE to the inflammation from above, not the cause.

I never quite bought into this theory either though... something wasn't adding up. Why was the thyroid function low / sluggish in the first place? In Ray's view, the low thyroid function PRECEDES the autoimmunity. But it made much more sense to me that the autoimmunity and corresponding inflammation in the area would be the things to precede (or cause) the poorly functioning thyroid, NOT the other way around......... "what came first, the chicken or the egg?". I couldn't quite square this in my own mind...

Additionally, Ray's explanation might explain "autoimmunity" in the thyroid, but what about vitiligo (or any other autoimmune condition)? Was the vitiligo occurring randomly due to high stress hormones and high estrogen? It's onset certainly did coincide with a stressful time for me... but why is it not reversible upon supplementing thyroid hormone and removing stressors.

The only other things I'd seen to have any impact at all was high dose vitD (as in the study from the previous comment) and UVB therapy (which makes the skin synthetize vitD). (As mentioned above, vitD and vitA compete with each other for use / function...)

In comes Grant's theory, that vA is the cause of all / most autoimmunity (I know, I'm late to the party). I say to myself: "I'm skeptical, but let's give this a read" ... and it is actually beginning to make a lot of sense.

The vA isotretinoin pretty clearly caused the thyroid autoimmunity in the patient/s in that three-month stint of use. Some were also developing vitiligo alongside it.

When I look back in my dietary history:
- lots of milk, fortified grains, eggs, broccoli and carrots as a kid.
- when I went to university, being a very poor student, I survived off of pasta and tomato sauce, cereal grains, low quality meats. I knew my diet was very poor. But at the time, I knew nothing about nutrition, just that I must be deficient in SOMETHING... so what did I do? Take a multivitamin... IIRC it had 6000 IU of vitamin A in it per day. Maybe, just maybe, that dose, plus the stress, plus the terrible diet, led to the liver being overloaded (I already was consuming a lot of vA foods throughout my childhood, my mother is hypothyroid, I always had puffy eyes as a kid... perhaps I was already close to the precipice).
- It was at the end of my first year of university where the vitiligo appeared, and it spread FAST!
- It only slowed down after leaving university, where I ironically stopped taking my multivitamin and quit eating grains (first time I went "paleo") in about 2013.
- It has ramped up again in recent years, where my thyroid function has taken a huge hit at the same time. I have been eating lots of liver in that time (c. 1lb per month) - carnivore diet 2018-2020, Ray's principles from 2020-2023... may be related.

Possibly am clutching at straws. Obviously, I *want* the theory to be true, because it gives me hope of reversal. It has prompted me to try a very low vA diet though, whilst still sticking to "Peating" principles and macros as best as possible. Could take years to see any difference, and even then, no guarantees - but I'm just the sort of mad-man who could do it. I ate nothing but beef for about 2 years straight, so compared to that, this is a walk in the park in terms of being restrictive or not.

Just some thoughts.

Very interesting to me... obviously, I am aware that I am

 

[BigShoes]

I'm going to get (my version of ) a tan and take some full body photographs (not nudes, behave ) as evidence of my condition - which I should have done years ago tbh.

I'll give this a shot for a few years and see if there is any improvement. It'd be awesome if it works. I remember saying to myself at around age 20 that I was going to find a cure for this one day, and share it with the world. Whilst I obviously wasn't the one to find this information out, perhaps my n=1 could bear fruit. We'll see.

 

[Nebula]

Update on me: I'm getting a little more repigmentation so far this summer not even using tacrolimus cream, just getting a little sun here and there. I would guess the couple of months I used it last year is still having an immunosuppressant effect on the skin I put it on. I'm going to start using it again for the rest of the summer though.

 

[BigShoes]

Update on me: I'm getting a little more repigmentation so far this summer not even using tacrolimus cream, just getting a little sun here and there. I would guess the couple of months I used it last year is still having an immunosuppressant effect on the skin I put it on. I'm going to start using it again for the rest of the summer though.

That's awesome best wishes.

I feel like mine is too far gone for it to be practical. My torso above the navel is fine. My neck / head are mostly fine - entire arms and legs almost complete loss of pigment.

 

[Blossom]

Hi @Blossom - thank you for this, you look beautiful. And thank you for sharing your experience. I did have some more thoughts on this though - it would be great to know your thoughts too. See below:

I've been reading further into the vitamin A toxicity theory, and just spoke with Grant (Genereux) directly, asking if he'd seen some information correlating vA toxicity and vitiligo. I was personally skeptical that there was a link - why wouldn't I get eczema / psoriasis like others (which are apparently caused by vA according to the theory)? Why vitiligo? Still - the body can respond in funny ways, who knows...

Grant said to me (which was news to me): "it's quite well known that vit A toxicity can cause vitiligo. Very sadly, there are many young people in Africa who take accutane (retinoic acid) to specifically induce this condition to make their skin "white"..."

I did some more searching, and found the following:
- Vitiligo Appearing after Oral Isotretinoin Therapy for Acne

A study showing that vitiligo occurred in *some* patients following the use of accutane. An interesting excerpt from the article:

"Thyroid function test initially showed low TSH, 0.177 uIU/L (normal range: 0.27-4.2), and normal levels of free T3, 6.11 pmol/L (2.8- 7), and free T4, 15.7 pmol/L (12-22). Three months later, TSH was high, 9.61 uIU, and normal free T3 (4.7 pmol/L) and free T4 (12.2 pmol/L) and thyroid antibodies were positive; thyroid peroxidase antibodies were 157.59 IU/mL (normal range: 0-5.6) and thyroid thyroglobulin antibodies were 66.09 IU/mL (normal range: 0-4.11). She was started on thyroxine and followed up at the medical clinic."

Very interesting to me (and tragic)... basically: use of accutane led to elevated TSH and severe thyroid autoimmunity, when thyroid function was previously normal. This was in the patient who experienced onset of vitiligo.

Now, I have NEVER believed the mainstream view of autoimmunity. I just don't buy that the immune system randomly decided to attack the body. But I also found Ray's theory to be lacking - his theory of autoimmunity in the thyroid (to my understanding) was basically that:
(1) the thyroid function is low / sluggish
(2) Pituitary increases TSH to kick-start the sluggish thyroid, which is in itself an inflammatory hormone.
(3) other stress hormones and estrogen rise as a result of the stressed metabolism too, which are also inflammatory.
(4) The thyroid antibodies appear as a RESPONSE to the inflammation from above, not the cause.

I never quite bought into this theory either though... something wasn't adding up. Why was the thyroid function low / sluggish in the first place? In Ray's view, the low thyroid function PRECEDES the autoimmunity. But it made much more sense to me that the autoimmunity and corresponding inflammation in the area would be the things to precede (or cause) the poorly functioning thyroid, NOT the other way around......... "what came first, the chicken or the egg?". I couldn't quite square this in my own mind...

Additionally, Ray's explanation might explain "autoimmunity" in the thyroid, but what about vitiligo (or any other autoimmune condition)? Was the vitiligo occurring randomly due to high stress hormones and high estrogen? It's onset certainly did coincide with a stressful time for me... but why is it not reversible upon supplementing thyroid hormone and removing stressors.

The only other things I'd seen to have any impact at all was high dose vitD (as in the study from the previous comment) and UVB therapy (which makes the skin synthetize vitD). (As mentioned above, vitD and vitA compete with each other for use / function...)

In comes Grant's theory, that vA is the cause of all / most autoimmunity (I know, I'm late to the party). I say to myself: "I'm skeptical, but let's give this a read" ... and it is actually beginning to make a lot of sense.

The vA isotretinoin pretty clearly caused the thyroid autoimmunity in the patient/s in that three-month stint of use. Some were also developing vitiligo alongside it.

When I look back in my dietary history:
- lots of milk, fortified grains, eggs, broccoli and carrots as a kid.
- when I went to university, being a very poor student, I survived off of pasta and tomato sauce, cereal grains, low quality meats. I knew my diet was very poor. But at the time, I knew nothing about nutrition, just that I must be deficient in SOMETHING... so what did I do? Take a multivitamin... IIRC it had 6000 IU of vitamin A in it per day. Maybe, just maybe, that dose, plus the stress, plus the terrible diet, led to the liver being overloaded (I already was consuming a lot of vA foods throughout my childhood, my mother is hypothyroid, I always had puffy eyes as a kid... perhaps I was already close to the precipice).
- It was at the end of my first year of university where the vitiligo appeared, and it spread FAST!
- It only slowed down after leaving university, where I ironically stopped taking my multivitamin and quit eating grains (first time I went "paleo") in about 2013.
- It has ramped up again in recent years, where my thyroid function has taken a huge hit at the same time. I have been eating lots of liver in that time (c. 1lb per month) - carnivore diet 2018-2020, Ray's principles from 2020-2023... may be related.

Possibly am clutching at straws. Obviously, I *want* the theory to be true, because it gives me hope of reversal. It has prompted me to try a very low vA diet though, whilst still sticking to "Peating" principles and macros as best as possible. Could take years to see any difference, and even then, no guarantees - but I'm just the sort of mad-man who could do it. I ate nothing but beef for about 2 years straight, so compared to that, this is a walk in the park in terms of being restrictive or not.

Just some thoughts.

Very interesting to me... obviously, I am aware that I am

I was having some salmon roe (quite a bit actually) about the time the vitiligo came on. It’s rich in lutein and zeaxanthin which Grant and some others in the low A community have cautioned against. I no longer eat that and haven’t for years. I’m not sure if there’s a connection or if it was just a coincidence but I definitely know I do not tolerate carotenoids. I think people need to listen to their inner guidance and this is one of my main takeaways from Peat. If you feel it’s a possibility for you I’m definitely the last person to try to talk you out of experimenting to see if it helps. It definitely helped me a lot.

 

[Ras]

I will say, the study I linked with the vitamin D was very interesting to read. I believe it has been posted here before on a psoriasis thread. In case people don't have the time to read, basically:
- 16 vitiligo patients were given an extremely high dose of vitamin D for 6 months (35 000 IU per day)
- 75% (12 people) saw noticeable re-pigmentation - and 4 of those 12 saw 75% plus recoverage of pigment. 25% of people (the remaining 4 of 16) saw no change.

35 000 IU of D3 per day seems to be asking for trouble... not something I would like to try. And I have no idea what the mechanism would have been for the re-pigmentation. At first I thought it might be that: functions were being kick-started again (a good thing), but I have come to understand that fat soluble vitamins can be immuno-suppressing in high quantities - which is not such a good thing, despite the positive effects RE: the skin condition.

I think your views on Vitamin D are excessively cautious. If you read the Steck (not Streck) report, you'll understand that truly high doses of Vitamin D (upward of 1,000,000 IU) are safe. Thirty minutes of sun exposure can produce 20,000 IU of Vitamin D. I've taken 100,000 IU of Vitamin D for several weeks without complication. This is the only thing that healed my chronic shoulder injury.


View: https://www.facebook.com/100000445327261/posts/5653726151318840/

 

[Ras]

I think your views on Vitamin D are excessively cautious. If you read the Steck (not Streck) report, you'll understand that truly high doses of Vitamin D (upward of 1,000,000 IU) are safe. Thirty minutes of sun exposure can produce 20,000 IU of Vitamin D. I've taken 100,000 IU of Vitamin D for several weeks without complication. This is the only thing that healed my chronic shoulder injury.


View: https://www.facebook.com/100000445327261/posts/5653726151318840/

@BigShoes
Here's an inexpensive, quality product:

Amazon.com

 

[shanny]

Bumping this thread to see if anyone has had any success with this. My coworker approached me yesterday as her 6 year old son was just diagnosed with vitiligo. She's one of those warrior mom's that went into the dermatologist appointment armed and dangerous, and told me that she knew way more about the condition than he did, and she was extremely disappointed in what he had to say. Shocking, I know.

She asked if I knew of anything that could help so I've been putting together some strategies for her. She's already using a hydrogenated coconut oil that she ordered from Australia and started supplementing vitamin D3, she's clearly looking for information in the right places!

The other element of this I found interesting is that the vitiligo spots are the exact outline of his liver. The lack of pigmentation is on the anterior right side, his side, and the posterior aspect directly over his liver. Seems like that's probably not a coincidence?

Thoughts and recommendations much appreciated!

 

[Peatful]

Bumping this thread to see if anyone has had any success with this. My coworker approached me yesterday as her 6 year old son was just diagnosed with vitiligo. She's one of those warrior mom's that went into the dermatologist appointment armed and dangerous, and told me that she knew way more about the condition than he did, and she was extremely disappointed in what he had to say. Shocking, I know.

She asked if I knew of anything that could help so I've been putting together some strategies for her. She's already using a hydrogenated coconut oil that she ordered from Australia and started supplementing vitamin D3, she's clearly looking for information in the right places!

The other element of this I found interesting is that the vitiligo spots are the exact outline of his liver. The lack of pigmentation is on the anterior right side, his side, and the posterior aspect directly over his liver. Seems like that's probably not a coincidence?

Thoughts and recommendations much appreciated!

To me
This is a stressed little boy


Decrease stress
Increase mitochondrial respiration


Well fed - which for a child this age would mean no restrictions generally speaking.
Outdoors
Play
Carefree
No masks- obviously. Don’t know if it was exasperated while in a muzzle.
Safe and secure parental support

Hopefully she makes no big deal of it with him.
Kids tend to think things are their fault- which carries a burden of stress and hence consequences.
When momma or daddy is stressed- kids own it unfortunately.

Best for him.

 

[shanny]

To me
This is a stressed little boy


Decrease stress
Increase mitochondrial respiration


Well fed - which for a child this age would mean no restrictions generally speaking.
Outdoors
Play
Carefree
No masks- obviously. Don’t know if it was exasperated while in a muzzle.
Safe and secure parental support

Hopefully she makes no big deal of it with him.
Kids tend to think things are their fault- which carries a burden of stress and hence consequences.
When momma or daddy is stressed- kids own it unfortunately.

Best for him.

Thank you!

They are a freedom fighting Christian family, no muzzles no jabs. I'm not sure about the other jabs, but mom is quite the bad ****, so I'm assuming they didn't follow the regular schedule if jabbed at all. This is a kid that spends his entire day outside. They have a pool so he's been getting sunshine all summer, four-wheeling, soccer, baseball, weekends on the lake. That's why I came to the forum, because it seems like they are already doing so much right! I appreciate your help.

 

[shanny]

Increase mitochondrial respiration

Any ideas besides removing PUFA? I agree with you that I think it needs to be minimal as I don't want to stress the mom or the kid!

The other thought I had was the chlorine from the pool. I don't think it's the cause, but wondering if it added to the "stress"?

 

[LizRey86]

I have some small spots that started showing up a year or two ago, Ive read it has alot to do with adrenal health. Mainly adrenal insufficiency & low cortisol @Blossom , I know you and I have discussed the low cortisol in detail. Maybe it is a rabbit hole to investigate.