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REWARD $$: Cure Hypervitaminosis A.

vitamin a retinol hypervitaminosis cure reward

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#1 chung_pao

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Posted 14 November 2018 - 11:00 PM


Hi Longecity,

Long time no see.

Long story short, I have been suffering from Chronic Hypervitaminosis A for about 5 years now (since October 2013, if I recall correctly.).
It is diagnosed by a doctor and there's no doubt about the cause: which was excessive VA intake coupled with regular intake of various performance enhancing drugs, teas, nootropics, supplements etc.

It culminated in a few episodes of Acute Hypervitaminosis A during preparation for an SAT test I was taking, which was supposed to qualify me for medical school.
I suffered all the typical symptoms of VA toxicity after intake of my habitual Cod liver oil dose, taken with a strong multivitamin, followed by green tea.
I experienced extreme head pain, unlike I ever felt before (see intracranial hypertension), bone and joint pain, dry flaking skin and nausea. Also felt like I would pass out and spent the whole day in bed suffering.

Since then, most of my time and attention has been spent trying to find a cure.
I have looked for 5 years, online and in the real world, and while living in 4 different countries for an extended period of time.
By myself, I have probably spent 10000$ USD on tests in search of a cure already.
My quality of life has been reduced to 5-10% of what it was, and performance in all aspects (social, academic, athletic) has been reduced to nothing; a joke.
I have tried to enjoy a normal life, but every time I consume anything with additional VA, symptoms occur which interrupt.

So, life sucks these days.
Thus I turn to the biohackers and experts at Longecity for a cure that could turn my life around.

And, I'm willing to declare a REWARD aswell.

To the one person who can cure my Chronic Hypervitaminosis A, I will reward 5% of my monthly salary for 5 years time (negotiable).

We can discuss the actual amount in the event that you make a discovery that could help.
A one time payout could also work.
****(Amount is negotiable.)****

So, you can do it because you enjoy a medical challenge, or for profit, or to help another human being, but please consider if you could cure this condition for which doctors have not yet discovered an effective treatment.

Thank you.

Tl;dr:

I'm suffering from (diagnosed) Chronc Hypervitaminosis A.
Doctors have no treatment for it.
Please help me cure it.
If you'd like compensation for your time, I'd offer a significant reward if you can offer a cure.



I assume a normal treatment protocol would consist of:

*Minimizing VA intake.
*Addition of a treatment that either minimizes VA absorption or increases VA losses.

I'm an honest person and would gladly pay whatever I am able to, if anyone could solve this.

Discussions can be held in this thread or in PM or on messaging apps.

In case the disease is cured, I may post whatever was most helpful here in the thread for future reference.

It would not only save me, but a whole community of other people with the same problem. Discussions are held on other websites among people who all have the same problem, but lack an effective treatment.

Think about it:
The problem is an excess of Retinyl esters (of palmitate or other fatty acids), which saturate storage capacity. Any additional intake causes toxic blood concentrations.

What treatment may inhibit absorption of additional VA, may increase losses to the point of depletion, or simply restore normal VA metabolism?
Any ideas?

Edited by chung_pao, 14 November 2018 - 11:20 PM.


#2 pamojja

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Posted 14 November 2018 - 11:20 PM

 

I suffered all the typical symptoms of VA toxicity after intake of my habitual Cod liver oil dose, taken with a strong multivitamin, followed by green tea.

 

May I ask for long and how much IUs of preformed vitamin A has caused your Hypervitaminosis? What blood test did ascertain the diagnosis, at which levels? Also any other lab-tests off, which could give further indications for underlying mechanisms? Other precondition or additional since then?



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#3 chung_pao

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Posted 14 November 2018 - 11:30 PM

High VA diet for 3 years, hoping that a high nutrient density would improve health, failing to consider that fat soluble vitamins accumulate until they can't be stored anymore.

Regular intake was: Eggs, spinach, chicken liver (few times a week), cod liver oil (high intake), multivitamin (200% of RDI).
I would substitute dark greens for carbohydrates following a ketogenic diet at times.
Most likely cause was consuming more eggs, liver, cod liver oil and supplements during the last year before toxicity occurred.

Other drugs and CYP substrates has obviously contributed aswell: Daily intake of green tea and yerba mate, periodically using just about all smart drugs and performance enhancers discussed on this forum.

I don't know the exact IUs. I know it was a lot.

Diagnosis was made by two separate doctors upon examination of physical sympoms and blood tests.

The physical symptoms are incredibly obvious indicators that it is VA toxicity.
Weight loss, skin so dry that it falls off upon brushing it, hair loss, skin flushing, weak and painful joints, water retention, and this new form of headache which occurred directly along with all other symptoms in response to isolated VA intake.

Blood tests I remember were;
Suppressed TSH and hypothyroidism secondary to VA toxicity. (It suppresses TSH)

Elevated ferritin (not sure, years ago now).
Hypogonadism (testosterone levels of 250 ng/dl, 30% of normal levels).
High b12 (not sure, long ago).

I have simply stopped performing blood tests because it's a useless expense at this point. Money is running out and I'd rather spend that on a potential cure.

Just compare a picture of me from before and after the occurrence of VA toxicity and you'd see the difference and that something isn't right.

Edited by chung_pao, 14 November 2018 - 11:38 PM.


#4 chung_pao

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Posted 14 November 2018 - 11:45 PM

I asked Silverhydra/Kurtis Frank, the supplement expert and founder of Examine.com personally about help before.

He suggested I look for something that "Interrupts enterohepatic circulation" of bile acids, as VA is circulated there, as a mechanism.

The best mechanism would probably be inhibition of Bile acid reabsorption, as VA is circulated in bile acids, and they are required for its absorption.
"Inhibition of ASBT/SLC10A2" (the sole enzyme responsible for BA reabsorption).


Other potentially useful mechanisms I have considered are:
GR antagonists: Inhibits Bile reabsorption. Causes VA and Bile losses.

FXR agonists: Inhibits Bile reabsorption. Causes VA and Bile losses.
Also induces ADH1/Retinol Dehydrogenase, and CYP.

Pxr agonist: induces cyp as VA metabolizing enzymes.

CAR agonist: induces cyp and aldehyde dehydrogenase, as VA metabolizing enzymes.
Phenobarbital has shown to deplete VA by this mechanism.

AhR agonists: Toxic, but depletes VA in studies with Dioxin, cigarette smoking and others.

Bile acid sequestrants: Eliminates bile which creates VA losses as it's transported in bile.

Edited by chung_pao, 14 November 2018 - 11:53 PM.


#5 pamojja

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Posted 15 November 2018 - 12:29 AM

I also take preformed vitamin A since 10 years and multiples the RDA, but without toxicity or any symptom you report at all. On the contrary, even found above a certain intake eliminated my infrequent psoriasis outbreaks. Therefore there must by other preconditions or co-factors you haven't thought about yet.

 

 

High VA diet for 3 years, hoping that a high nutrient density would improve health,

 

Again, you didn't answered my questions about preconditions. But here confirm you indeed had? What were these? Best would be a complete medical history with diagnosed (or not) conditions from birth till then. And an other omission: all prescription drugs taken and for how long (which you can remember).

 

 

Diagnosis was made by two separate doctors upon examination of physical sympoms and blood tests.

The physical symptoms are incredibly obvious indicators that it is VA toxicity.

 

But you didn't mentioned the most obvious: a serum retinol, RBP (retinol binding protein) and their ratio to ascertain this diagnosis? Again, what were these levels? - I had diagnosis given prematurely and repeatedly too with very limited evidence. It helps either getting you hooked on drugs, or in intractable complicated non-treatable diseases, to get rid of difficult patients.

 

 

Just compare a picture of me from before and after the occurrence of VA toxicity and you'd see the difference and that something isn't right.

 

That's not in question. Since many before or after pics, all of your mentioned lab tests, as well as your symptoms (except the one which occurs directly in response to isolated intake) could just as well be indicative of a great number of co-existing underlying conditions and/or drug side-effects, we simply aren't sure yet with what we have to do it here.



#6 Phoebus

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Posted 15 November 2018 - 01:02 AM


Bile acid sequestrants: Eliminates bile which creates VA losses as it's transported in bile.

 

 

so you have tried some bile sequestrants or not? 

 

I am thinking  cholestyramine (Questran, Prevalite), colestipol (Colestid, Flavored Colestid ), and colesevelam  (Welchol)



#7 chung_pao

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Posted 15 November 2018 - 01:34 AM

I also take preformed vitamin A since 10 years and multiples the RDA, but without toxicity or any symptom you report at all. On the contrary, even found above a certain intake eliminated my infrequent psoriasis outbreaks. Therefore there must by other preconditions or co-factors you haven't thought about yet.


Again, you didn't answered my questions about preconditions. But here confirm you indeed had? What were these? Best would be a complete medical history with diagnosed (or not) conditions from birth till then. And an other omission: all prescription drugs taken and for how long (which you can remember).


But you didn't mentioned the most obvious: a serum retinol, RBP (retinol binding protein) and their ratio to ascertain this diagnosis? Again, what were these levels? - I had diagnosis given prematurely and repeatedly too with very limited evidence. It helps either getting you hooked on drugs, or in intractable complicated non-treatable diseases, to get rid of difficult patients.


That's not in question. Since many before or after pics, all of your mentioned lab tests, as well as your symptoms (except the one which occurs directly in response to isolated intake) could just as well be indicative of a great number of co-existing underlying conditions and/or drug side-effects, we simply aren't sure yet with what we have to do it here.

I have never suffered any other severe diseases other than colds and occasional bouts of fever.
I have never been prescribed a drug as a form of treatment.

I have followed a normal diet, exercised a lot and had a healthy lifestyle up until that point.

What caused the outbreaks were supplements and High VA intake.
I may have had a predisposition for it aswell.

*No other diagnoses or diseases.
*No prescribed drugs.
I used prozac for 2 months in my life.
I used modafinil for a total of maybe 20 days, not consecutive days.
I have used on occasion: All racetams. ALA. ALCAR. Creatine. Fish oil, low amounts. Ginkgo extract. Forskolin and CILTEP.
I used Green tea extract for a while before becoming sick.
I used supplemental zinc and vitamin D daily for a year, in normal doses.
I used supplemental iron for a very short time, maybe a few weeks. RDI doses.
I used daily for a few months: Green tea. Sometimes with Yerba mate.
I never drinked a lot.
I smoked from 19 to 20 years old, 1 year total.

I don't have the test results for VA toxicity anymore. It was 4 years ago I was diagnosed. Symptoms are the same to this day.

Symptoms are not caused or triggered by something else.
Symptoms occur in response to VA intake.
Even taste of food is altered, higher VA content makes it taste bad.

I was never "hooked on drugs".

I'm 28 and until 23 years old, the only thing I was hooked on was exercise, work and coffee. I slept enough and made sure to get recovery when I needed it. I tried to get stronger in the gym and tracked known factors which affect that.
Such as sleep, protein and calorie intake, nutrient levels, etc.
The problem was simply VA accumulation, which I may be predisposed to.

Edited by chung_pao, 15 November 2018 - 01:37 AM.


#8 chung_pao

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Posted 15 November 2018 - 01:39 AM

so you have tried some bile sequestrants or not?

I am thinking cholestyramine (Questran, Prevalite), colestipol (Colestid, Flavored Colestid ), and colesevelam (Welchol)

I would like to, but they are not available OTC or in any online pharmacy I'm aware of.
PM where to buy if you know.

Edited by chung_pao, 15 November 2018 - 01:45 AM.


#9 Phoebus

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Posted 15 November 2018 - 02:15 AM

I would like to, but they are not available OTC or in any online pharmacy I'm aware of.
PM where to buy if you know.

 

 

have you asked a Doc? you could try saying you want to control you cholesterol and statins have negative side effects so you want to try Cholestyramine 


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#10 Phoebus

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Posted 15 November 2018 - 02:17 AM

 

natural products can and do bind bile acids and thus reduce bile acid diarrhea and bile acid colitis. These are psyllium, flax fiber, chia seed fiber, and less powerful - apple and grapefruit pectins. Saponins are also available and work well -- marketed as Immun-Stat --- and pro biotics also help. Of all of these, I recommend the following: High Fiber Oat Meal for daily breakfast - two packets per day if instant - aim for 10 grams per packet - thus 20 grams per breakfast or other meal. Plus: psyllium powder daily - follow directions - space out in PM; Plus Flax Seed Powder - can add to oatmeal; Plus one apple per day; Plus Eliminate Trans Fats, Eliminate Saturated Fats, Minimize Chocolate; Start a Pro Biotic of any brand per day. Best wishes.

 


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#11 brundall

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Posted 15 November 2018 - 03:09 AM

Start drinking moderate amounts of alcohol and take taurine supplements? 

 

https://www.ncbi.nlm...les/PMC3367262/

 

https://www.research...tamin_A_in_rats

 

 


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#12 Phoebus

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Posted 15 November 2018 - 04:37 AM

 

 

Treatment of Hypervitaminosis A in Animals
  • There are treatments that are pretty effective in alleviating toxicity level in animals despite the fact that they are not thought to be standard treatments. Some of them have worked in humans too.
  • In rabbits, vitamin E dosage prevents the side effects of vitamin A overdose.
  • In rats, taurine and cholestin have played a vital role in managing the toxic effects.
  • Vitamin K suppresses the cell ratios of vitamin A as well as thwarts hypoprothrombinemia in rats.

 


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#13 pamojja

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Posted 15 November 2018 - 12:38 PM

By the way, whatever I write is not medical advise. Nor to treat or diagnose any disease. Just sharing what I experienced with and learned from my own chronic conditions, and not for a price.

 

I have never suffered any other severe diseases other than colds and occasional bouts of fever.
I have never been prescribed a drug as a form of treatment.

The problem was simply VA accumulation, which I may be predisposed to.

 

Wow. I'm starting to get jealous. My super-shortened medical history reads like this:

 

Pneumonia at birth, fever seizures with 2, meningitis with 7, X-ray found tubercle with 20, Palmoplantar pustular psoriasis, only 12 teeth remaining at age 29 (due to tetracycline treatment as new-born), 7 malaria attacks (4 of which the at times deathly falciparum), amoebic hepatitis (enlarged liver), spondilodiscitis and rhinitis.
2 years before my PAD diagnosis a very stressful job (which I quit just before the diagnosis), schistosomiasis, cystitis, a myopericarditis, and finally my first root-canal (without giving permission!). With the chronic bronchitis I also got a diagnosis of COPD (symptom-free after the bronchitis) and T2D (controlled with diet, which I would rather classify as prediabetes).

 

Beside tetracyclines at birth, a whole array of anti-biotics were given to me like vitamin pills till age 10. Usual toddler vaccinations (including tuberculosis I later still got). Almost all anti-malarials on the market, etc. Usual childhood illnesses (mumps, measles)..

 

Congratulation to your former almost pristine health. However, that makes it much more difficult to single out preconditions which might have predisposed you to vitamin A toxicity. While in my case I had a whole plethora of preconditions reflected in my lab-results to attack systematically. Though as well considered a chronic non-reversible condition, that whole-hearted approach worked wonders for me.

 

By myself, I have probably spent 10000$ USD on tests in search of a cure already.

 

Most of my tests I've got through my GP on insurance, those paid out of pocket haven't costing more than about 800,- EUR during the 10 years of recovering from my diseases. Still worth every penny for succeeding.

 

Now I've got a spreadsheet with almost 300 bio-markers, some of them very regularly tested, and their improvement totally correlating with the gradual improvement in my allegedly non-reversible condition.

 

Having spent multiples of that for testing, you must have something much much more extensive and comprehensive? Have you looked at your lab-tests with more tight reference ranges, for example used by functional medicine practitioners to uncover all possible contributors to a chronic disease, in your case a predisposition to vitamin A toxicity?

 

 

  • In rabbits, vitamin E dosage prevents the side effects of vitamin A overdose.
  • In rats, taurine and cholestin have played a vital role in managing the toxic effects.
  • Vitamin K suppresses the cell ratios of vitamin A as well as thwarts hypoprothrombinemia in rats

 

Agree with Phoebus. The first with any vitamin overdose is thinking of those other co-dependent nutrients first depleted. Like vitamins D, E, K..


Edited by pamojja, 15 November 2018 - 12:42 PM.


#14 pamojja

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Posted 15 November 2018 - 03:23 PM

If you didn't read it already, maybe you find something useful in this blog-post and it's extensive comments:

 

How I got Vitamin A Toxicity

 

December 5, 2014, By Lori, 648 Comments

 

So here they are, this is what I did/am doing:

  • Taking zinc (supposed to help counteract)
  • Taking vitamin C and eating a lot of foods high in vitamin C (also supposed to help counteract)
  • Taking Vitamin E -I just started this today, so I can’t say whether it’s helping or not yet but, this study found in rabbits that it counteracted the vitamin A toxicity effects.
  • Drinking a lot of water- Not sure how much this helps but, I do feel better staying hydrated and I figure it must help to just flush everything out of my system.
  • Eating good meals that have little to no vitamin A
  • Trying to exercise/move around to increase my metabolism as much as possible, despite feeling bad.
  • Doing a magnesium or Epsom salt foot bath 2 times a day

 

4 years later she reported:

 

 

Lori says

, March 30, 2018 at 2:31 pm
 

 

 

Yes, I don’t restrict my diet at all now for vitamin A.

 



#15 Daniel Cooper

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Posted 15 November 2018 - 03:34 PM

Why would not normalizing vitamin A intake and time not resolve this?

 

Is acute vitamin A toxicity known to cause these sorts of persistent symptoms?  I could see if you had liver or kidney damage or neurological damage, but dry skin 4 years after you presumably stopped your excessive vitamin A intake?

 

 

 



#16 Dorian Grey

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Posted 15 November 2018 - 04:20 PM

I recall Ray Peat advocating raw carrots as helpful in sequestering and passing toxic bile acids.  A quick search uncovered this:

 

https://www.ncbi.nlm...v/pubmed/474479

 

"Two hundred grams of raw carrot eaten at breakfast each day for 3 weeks significantly reduced serum cholesterol by 11%, increased fecal bile acid and fat excretion by 50%,"

 

Every little bit helps.  



#17 Omega 3 Snake Oil

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Posted 15 November 2018 - 04:34 PM

someone suggested bile sequesterants... TUDCA?



#18 Dorian Grey

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Posted 15 November 2018 - 04:50 PM

The alcohol angle is interesting.  Alcohol is known to deplete Vitamin-A, but also has an interesting property of shifting VA out of the liver.  

 

https://www.ncbi.nlm...les/PMC3367262/

 

"Indeed, alcohol consumption has been associated with declines in hepatic levels of retinol (vitamin A), as well as retinyl ester and retinoic acid; collectively referred to as retinoids."

 

"reviewed research supports the notion that chronic alcohol consumption precipitates a decline in hepatic retinoid levels through increased breakdown, as well as increased export to extra-hepatic tissues.  While the precise biochemical mechanisms governing alcohol’s effect remain to be elucidated, its profound effect on hepatic retinoid status is irrefutable."

 

Some caution may be indicated in trying this "alcohol therapy"...  Alcohol and Vitamin-A have been shown to be a bad mix, & both alcohol and excess A can stress the liver.  Moderate alcohol intake & close monitoring of liver enzymes would be wise if you're going to experiment with this angle.  

 

I'd also be curious about your ferritin and potentially looking at reducing this.  Males tend to accumulate iron, & a ferritin elevation at your age might be unwise to ignore.  

 

https://www.longecit...isease-omnibus/

 

Blood donation is free, & quite safe for most folks, & high iron can cause a lot of problems that may contribute to and complicate other maladies.  The iron is in the red cells, so you must donate whole blood.  Plasma & platelet donations do nothing to lower iron.  



#19 Dorian Grey

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Posted 15 November 2018 - 04:59 PM

someone suggested bile sequesterants... TUDCA?

 

Good point!  Anything that stimulates bile flow should logically be helpful.  TUDCA, Curcumin & Lecithin come to mind.  

 

Increased bile flow, combined with the raw carrot/fiber bile acid absorption should hasten recovery.  



#20 chung_pao

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Posted 15 November 2018 - 07:32 PM

http://www.jpma.org....article_id=5414

Here we go. Get me some Phenobarbitone.


(I'm still watching the thread actively, considering all replies seriously and will reply shortly.
Serious about rewarding a significant contributor.)


https://www.ncbi.nlm...pubmed/8975784/

Provided detoxification enzyme induction by Phenobarbital is what causes the VA decline, Doxylamine should have the same VA depleting effect.

"None of the enzyme-inducing effects of doxylamine could be distinguished from those of phenobarbital. These results suggest that doxylamine is a phenobarbital-type inducer of liver microsomal cytochrome P450 in B6C3F1 mice."

Mechanisms of Phenobarbital's VA depleting effect:

https://www.ncbi.nlm...pubmed/6141914/
https://www.ncbi.nlm...pubmed/3778519/
http://www.jbc.org/c...9/5228.full.pdf
https://www.scienced...006295286900092
https://www.scienced...00629528990155X
https://sci-hub.tw/

(Read the whole studies.
Steal with sci-hub.tw if necessary.)

And by the way, I tried daily ethanol administration. It sucked. Social-, health-, and general life side effects were too severe. Although I used red wine, which may not have been ideal.

Attached Files


Edited by chung_pao, 15 November 2018 - 08:26 PM.


#21 Ovidus

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Posted 15 November 2018 - 07:42 PM

How about getting down to 5% bodyfat?

Stuff is stored in fat tissue I gather, yeah?



#22 chung_pao

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Posted 15 November 2018 - 07:51 PM

If you didn't read it already, maybe you find something useful in this blog-post and it's extensive comments:


4 years later she reported:


I have gone through that whole thread and participated with posts.
Their concluding recommendation is a "minimal VA diet", which I have followed for years.
Elimination rate is too slow, nothing happens.

#23 chung_pao

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Posted 15 November 2018 - 07:54 PM

How about getting down to 5% bodyfat?

Stuff is stored in fat tissue I gather, yeah?


Stuff is stored in Stellate Cells (90%+), especially Hepatic. Small amounts in hepatocytes and adipose tissue aswell.

I tried. Seems like the rate limiting factor is VA elimination by drug metabolizing enzymes or biliary losses.
I was at a sicky low BF before, which caused my Bioimpedance scale to simply show Error because it couldn't measure below 5%.
I also used Caliper and Ultrasound methods to at least prove below 10% aswell, knowing that bioimpedance scales are unreliable.

Edited by chung_pao, 15 November 2018 - 07:57 PM.


#24 pamojja

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Posted 15 November 2018 - 08:08 PM

I have gone through that whole thread and participated with posts.
Their concluding recommendation is a "minimal VA diet", which I have followed for years.
Elimination rate is too slow, nothing happens.

 

I read the conclusion differently:

 

 

Lori says

, February 18, 2017 at 10:15 pm
 

 

 

Hi Emma, hope you are feeling better! I had acute symptoms for roughly 3 months or 4 months at most (although it slowly got better in that time)..then things got significantly better. Now, it’s been 2 years since I had vitamin A toxicity and I feel great.

 

 

I definitely recommend the supplements I mentioned above in the post. I think they really helped me. Even though, the only thing that is really healing is time, unfortunately. I especially noticed a difference when I took the milk thistle.

 

 

For diet, I would just stick to avoiding foods high in vitamin A. It’s impossible to avoid it completely..it’s in almost everything. I ate cereal with milk, toast, fruit, vegetables, meat potatoes, etc.

Though elimination of dietary vitamin is certainly a prerequisite


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#25 xEva

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Posted 16 November 2018 - 02:55 AM

hey chung_pao :) I can't offer you a cure but want to ask, how sure are you that hypervitaminosis A is what ails you now?

 

According to the literature, it's very unusual for a young and otherwise healthy person to suffer from the consequences of the VA overload for such a long time.   Also, what do you suppose the mechanism of VA toxicity lasting this long should be? The worst cases of VA overload are known to cause liver or kidney damage. Do you have symptoms or tests that support the idea of liver or kidney damage? 

 

See, I do not doubt that at the time of diagnosis you did have VA overload. But after so many years on a low-VA diet, it is unlikely that VA is the cause for your current ills. Very often, when faced with an unknown illness, people tend to focus on the one known diagnosis to the exclusion of other possibilities. What if VA was just a confounding factor? Even if it was a trigger for something else, it's still 'something else' that is causing your troubles now.  

 

iow, such a long history just does not fit into what's known about hypervitaminosis A. It must be something else.


Edited by xEva, 16 November 2018 - 02:58 AM.

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#26 Dorian Grey

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Posted 16 November 2018 - 04:00 AM

I've never heard of "chronic" hypervitaminosis-A either.  Would like to rant about the ferritin for a bit if I may.  

 

The upper limits for the normal range for ferritin are set quite high by most labs (300+), and are the threshold for clinical iron overload.  It's highly unusual to see an iron accumulation flagged high in 20 something males, unless they have the genetic predisposition to accumulate iron like this.  Ferritin over 100 is actually quite rare in one's 20s.  

 

Hemochromatosis is notorious for being mis-diagnosed for a number of years, and symptoms of hypogonadism, Low-T, fatigue and aching joints are commonly noted.  Hemochromatosis is NOT a diagnosis you want to miss, & if your ferritin is flagging high, this is a distinct possibility.  Males typically become symptomatic in their 30s, & wind up in serious trouble (cirrhosis, heart disease) in their 40's if not treated.  Look Here:

 

http://www.irondisor...hemochromatosis

 

"According to the Centers for Disease Control and Prevention (CDC), people with HHC are often misdiagnosed and on average see three doctors over almost 10 years before obtaining a successful diagnosis."

 

Can you dig up your old labs and find just how high your ferritin was?  


Edited by Dorian Grey, 16 November 2018 - 04:10 AM.

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#27 chung_pao

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Posted 16 November 2018 - 06:58 AM

I've never heard of "chronic" hypervitaminosis-A either. Would like to rant about the ferritin for a bit if I may.

The upper limits for the normal range for ferritin are set quite high by most labs (300+), and are the threshold for clinical iron overload. It's highly unusual to see an iron accumulation flagged high in 20 something males, unless they have the genetic predisposition to accumulate iron like this. Ferritin over 100 is actually quite rare in one's 20s.

Hemochromatosis is notorious for being mis-diagnosed for a number of years, and symptoms of hypogonadism, Low-T, fatigue and aching joints are commonly noted. Hemochromatosis is NOT a diagnosis you want to miss, & if your ferritin is flagging high, this is a distinct possibility. Males typically become symptomatic in their 30s, & wind up in serious trouble (cirrhosis, heart disease) in their 40's if not treated. Look Here:

http://www.irondisor...hemochromatosis

"According to the Centers for Disease Control and Prevention (CDC), people with HHC are often misdiagnosed and on average see three doctors over almost 10 years before obtaining a successful diagnosis."

Can you dig up your old labs and find just how high your ferritin was?


I just did; Ferritin was 361 at the time of testing, July 2017.

But honestly, there is no other change, dietary or other, that I can make to affect this disease.

I have tried changing every factor that affects my health, including supplements, food, environment, etc. I have eliminated and re-introduced everything only to determine that the sole trigger is VA intake.

For example, after 12-16h of fasting, most symptoms start to fade, and only re-occur in response to VA intake.
I just can't store any more of it, and it has become toxic.

#28 Dorian Grey

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Posted 16 November 2018 - 08:37 AM

Ferritin at 361 is WAY too high for a young man in his 20s.  A full iron panel is indicated and TSAT (iron saturation) will reveal all.  It (TSAT) should be in the middle third of the normal range.  High ferritin combined with elevated TSAT = inflammation and disease.  Fatigue, Low-T, joint aches and hypogonadism are classic hemochromatosis.  You've already got confirmed evidence of clinical iron overload.  Please don't overlook the possibility this may be what's causing your malaise. 

 

This (TSAT) is a dirt cheap test...  Get 'er done!  

 

When iron is high, many things can trigger symptoms.  The alcohol therapy you mentioned is one of them.  Alcohol & iron a bad mix.  I'm curious if you've seen "chronic" Vitamin-A hypervitaminosis documented in literature.  A major overdose can certainly cause chronic damage, but I've never seen a chronic sensitivity documented before.  I can't help but think something else might be going on. 

 

Your doctors that diagnosed you.  Did they form their opinion on their own from your labs/symptoms?  Or did you plant a seed...  "I think I might have taken too much Vitamin-A".  It's possible they simply went along with what you suggested and said "This is certainly possible, don't do that anymore and you should recover".  Many doctors humor their patients opinions, simply to brush them off and get them out of the office.  

 

I wouldn't assume a chronic Vitamin-A sensitivity could occur over half a decades time unless I'd seen it documented in legitimate research.  Has this sort of thing ever been seen before?

 

A wise man named Sherlock Holmes once said: "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth."


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#29 chung_pao

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Posted 18 November 2018 - 10:46 PM

Ferritin at 361 is WAY too high for a young man in his 20s. A full iron panel is indicated and TSAT (iron saturation) will reveal all. It (TSAT) should be in the middle third of the normal range. High ferritin combined with elevated TSAT = inflammation and disease. Fatigue, Low-T, joint aches and hypogonadism are classic hemochromatosis. You've already got confirmed evidence of clinical iron overload. Please don't overlook the possibility this may be what's causing your malaise.

This (TSAT) is a dirt cheap test... Get 'er done!

When iron is high, many things can trigger symptoms. The alcohol therapy you mentioned is one of them. Alcohol & iron a bad mix. I'm curious if you've seen "chronic" Vitamin-A hypervitaminosis documented in literature. A major overdose can certainly cause chronic damage, but I've never seen a chronic sensitivity documented before. I can't help but think something else might be going on.

Your doctors that diagnosed you. Did they form their opinion on their own from your labs/symptoms? Or did you plant a seed... "I think I might have taken too much Vitamin-A". It's possible they simply went along with what you suggested and said "This is certainly possible, don't do that anymore and you should recover". Many doctors humor their patients opinions, simply to brush them off and get them out of the office.

I wouldn't assume a chronic Vitamin-A sensitivity could occur over half a decades time unless I'd seen it documented in legitimate research. Has this sort of thing ever been seen before?

A wise man named Sherlock Holmes once said: "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth."

-

Thanks for the input.
But no.

There is no other cause and I have already considered what you wrote. Along with every other suggestion in the thread.
I've had this for 5 years, for Christ's sake.

I came for suggestions and potential treatments.
Not to argue whether it is the problem or not.

Seems the most advanced biohacking forum online has no cure.

Delete thread.

Anyone with useful information may PM.
A message as short as one word would be rewarded provided it contains information leading to a solution.

Edited by chung_pao, 18 November 2018 - 10:49 PM.

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#30 markymark

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Posted 19 November 2018 - 08:29 AM

why not giving C60 a bona fide try....?

an well, I am afraid, a minimum of actual blood tests should be done in order not to miss other reason for your problems.

best

MM







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