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Pyruvate dehydrogenase function depends on thiamine (B1)

Chocolove

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Not sure if Spectracell testing is very accurate: I had it done in 2012 and my vitamin C levels came back well within the 'normal' range, despite clear physical signs of outright scurvy.
@dannybex Any chance you had iron overload?

Scurvy
Iron is known to destroy vitamin C, which in turn, results in scurvy...

Detection Of Iron Toxicity

There are two primary types of iron toxicity, inherited or congenital and acquired iron toxicity. This paper focuses on acquired iron toxicity and its correction. However, it is important to say a few words about inherited hemochromatosis.

The prevalence of inherited hemochromatosis...is actually between 3 and 6 in 1000. The gene frequency of hemochromatosis is actually higher than that of any other known genetic disorder...

In addition to the inherited disorder, acquired iron toxicity is quite prevalent and occurs insidiously. Iron overload from a variety of sources can contribute to a wide range of diseases from heart failure and diabetes to thyroid and liver disease...

Those most susceptible to iron toxicity are men, and people exposed to high levels of iron in their food, water or occupations.

Detection of iron toxicity is often based on suspicion due to joint pain, amenorrhea, or sudden onset of shortness of breath. A liver biopsy or other organ biopsy will confirm hemochromatosis. Elevated serum ferritin above 1000 nv/ml is also used to diagnose iron toxicity...

Fatigue
Iron accumulation in the liver and other tissues can result in extreme fatigue. Iron-induced diabetes can also be a cause of fatigue. Depletion of essential trace elements such as zinc, copper and manganese can impair energy production resulting in fatigue.
From: http://www.arltma.com/Articles/IronToxDoc.htm
 
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dannybex

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@dannybex Any chance you had iron overload?
Nope. Iron has always been at mid-range -- from 62 to 81 (normal 40-155) -- and ferritin has averaged 188.

The other oddity was that I wasn't taking much vitamin C because of oxalate issues, but still, Spectracell said it was well within normal range.

Anyway, thanks for asking. :)
 
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Gondwanaland

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Might be a possibility. Have been avoiding glycine or 'glycinate'-based minerals due to the oxalate connection. Have you been able to resolve that?
Everytime I eat chicken with skin I feel so good... It lifts all joint pain and improves sleep.
I am currently taking a supplement of Glucosamine + Hyaluronic Acid + Chondroitin + MSM and it is working. The daily dose is 3 tabs but I take 1/2 daily in 2 divided doses (1/4 tab at a time). Will have to retry magnesium glycine to see what happens, but I don't think I will tolerate that.

Glycine is really what enables me to tolerate higher salicylates. I can season my chicken with chillies, and even eat a mushroom as a side dish! Also animal fat (I don't know why or how) like lard, butter, cream.
 

Chocolove

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@pattismith
After 45 days of supplementing myself with high Thiamine dose (and monitoring my blood lactates for 3 months now), I am convinced that Thiamine saved me from the muscles dysfunctions I had, most of my brain fog, and it lowered my average lactates very quickly. I just hope the powerful effect I can see with that vitamin will keep working with time!
:woot::thumbsup: Yeah! Do tell. What was your dosage of thiamine and what form? Were you backstopping it with other B vitamins? Potassium?
:hug:
 

pattismith

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@pattismith


:woot::thumbsup: Yeah! Do tell. What was your dosage of thiamine and what form? Were you backstopping it with other B vitamins? Potassium?
:hug:
I take a tone of supplements since the middle of May.
B1 B6 B9 B12 D B2 B3 Iodine Potassium Selenium Lithium Calcium Magnesium Lysine, carnitine, CoQ10, Lipoic Acid, pregnenolone, some plants, probiotics,enzymes, amino acids, etc
(can give a precise list, forms, dosage if you wish)...
But it is only when I started Benfotiamine as it was advised on PR that I saw any improvment.
I started 300 mg per day, then switched quickly to 900 mg per day (300 mg x 3), then as my next Benfotiamine bottle was not arrived, I went to a pharmacy and bought Thiamine chlorhydrate 100mg/ml for injections.

The subQ injections were so paintfull, (I can't do it in the muscle because of pain), that I did several trials to find an easy and confortable way to manage with it.
I currently do 30 mg morning and evening per day subQ, but Costantini in his pilot study for Parkinson disease did 100 mg injection twice a week, so I consider to lower my dose to 30 mg per day to stay in the same range and see what happens.:)
 

pattismith

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J Investig Med High Impact Case Rep. 2015 Sep 24;3(3):2324709615607908. doi: 10.1177/2324709615607908.
Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome.
Galán F1, de Lavera I2, Cotán D2, Sánchez-Alcázar JA2.
Author information
  • 1University of Seville, Seville, Spain.
  • 2Universidad Pablo de Olavide-Consejo Superior de Investigaciones Científicas-Junta de Andalucía, Seville, Spain.
Abstract
Introduction. Symptoms of mitochondrial diseases and chronic fatigue syndrome (CFS) frequently overlap and can easily be mistaken.

Methods. We report the case of a patient diagnosed with CFS and during follow-up was finally diagnosed with mitochondrial myopathy by histochemical study of muscle biopsy, spectrophotometric analysis of the complexes of the mitochondrial respiratory chain, and genetic studies.

Results. The results revealed 3% fiber-ragged blue and a severe deficiency of complexes I and IV and several mtDNA variants. Mother, sisters, and nephews showed similar symptoms, which strongly suggests a possible maternal inheritance. The patient and his family responded to treatment with high doses of riboflavin and thiamine with a remarkable and sustained fatigue and muscle symptoms improvement.

Conclusions. This case illustrates that initial symptoms of mitochondrial disease in adults can easily be mistaken with CFS, and in these patients a regular reassessment and monitoring of symptoms is recommended to reconfirm or change the diagnosis.

KEYWORDS:
chronic fatigue syndrome; mitochondrial myopathy; myalgic encephalomyelitis; occipital neuralgia; riboflavin therapy


Full article free here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/
Thank you chocolove! I was happy to read the full article,

"Mitochondrial DNA variants (A750G, T1189C, and A1438G) found in this patient have been reported in patients with idiopathic sensorineural hearing loss; however, the pathogenicity of these variants should be established,"
 

pattismith

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Thank you chocolove! I was happy to read the full article,

"Mitochondrial DNA variants (A750G, T1189C, and A1438G) found in this patient have been reported in patients with idiopathic sensorineural hearing loss; however, the pathogenicity of these variants should be established,"
I did a search on these polymorphisms, and found comments on this page (genetic report):

The polymorphism A750G is very common, occurring in 99% of public mtDNA molecules.

T1189C is found in about 3% of public mtDNAs. It is diagnostic for haplogroup K1.

The polymorphism A1438G is common, occurring in over 95% of public mtDNAs.

I have a doubt on the significance of these variant; although T1189C has been found to be a cofactor for hearing loss "it is possible that these polymorphisms and their correlation with the GJB2 mutation have more effect on deafness."


 

debored13

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is there any evidence that high dose thiamine causes refeeding syndrome? I agree that it can have side effects, including palpitations, but I'm wary of attributing symptoms to a very specific etiology without knowing if it's plausible. I thought refeeding syndrome generally lead to lower thiamine rather than the other way around
 

dannybex

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is there any evidence that high dose thiamine causes refeeding syndrome?
Absolutely not. Thiamine is in fact one of the key compounds used to address refeeding syndrome:

https://headandneckoncology.biomedcentral.com/articles/10.1186/1758-3284-1-4

That doesn't mean thiamine is the only useful element, but it's one of the keys. High-dose may deplete magnesium and potassium (and possible phosphorus), but keep in mind there have been case studies using extremely high doses of thiamine for fibromyalgia -- 1500-1800mgs/day -- with no problems.


I agree that it can have side effects, including palpitations, but I'm wary of attributing symptoms to a very specific etiology without knowing if it's plausible. I thought refeeding syndrome generally lead to lower thiamine rather than the other way around
Yes, and that's why it's helpful, because it becomes rapidly depleted with feedings that often contain high-ish amounts of glucose.
 

debored13

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Absolutely not. Thiamine is in fact one of the key compounds used to address refeeding syndrome:

https://headandneckoncology.biomedcentral.com/articles/10.1186/1758-3284-1-4

That doesn't mean thiamine is the only useful element, but it's one of the keys. High-dose may deplete magnesium and potassium (and possible phosphorus), but keep in mind there have been case studies using extremely high doses of thiamine for fibromyalgia -- 1500-1800mgs/day -- with no problems.




Yes, and that's why it's helpful, because it becomes rapidly depleted with feedings that often contain high-ish amounts of glucose.
I do think its possible that thiamine could cause other deficiencies but labelling any of those "refeeding syndrome" seems too broad and wrong. I thought I had seen something somewhere about it possibly causing riboflavin deficiency. It directly upregulates pyruvate dehydrogenase I think? or inhibits PDK, so it could be seen as something that increases oxidative metabolism and thus increases need for other nutrients? I'm not sure on the details but I'm just confused by a lot of the references to it causing refeeding syndrome when I've found absolutely nothing in the literature to support that.

As for the last point, I saw that study which is what inspired me, although I think they did not do this for very long, correct?
 

dannybex

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I'm not aware of any studies or references saying thiamine causes refeeding syndrome, just the opposite.

Re the fibro study: I was curious about that and managed to contact one of the three women in that study about a year ago or so. This was three years after it was completed and she was still doing great. Doesn't mean others will, but she was fine...
 

Alvin2

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Are there any novelties of new substances that stimulate pyruvate dehydrogenase? like vitamin K2?
K2 is great for bone building and heart attack prevention (given adequate Vitamin A/D) but does nothing for ME in my experience.