Vitamin E has lessened my small fiber neuropathy symptoms

minimus

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I was diagnosed with small fiber neuropathy by skin biopsy in 2018 around the time my ME/CFS went from mild/moderate to severe/housebound.

Among many other symptoms in the last three years, I often experience mild aching/stabbing pains in my legs, especially in the hour or two after eating. A neurologist thought this symptom might be caused by mast cell activation aggravating my SFN, though this was just a guess on her part.

My primary ME/CFS doctor recently ordered blood work that included a serum vitamin E test. Mine was below normal. Apparently, a sub-normal vitamin E level is usually the result of impaired fat absorption, as opposed to actual dietary deficiency. I have SIBO, IBS and who knows what else, though a variety of tests in the last 18 months have not revealed any other problems.

In any case, I started taking a vitamin E supplement and about a week later noticed that the neuropathic stabbing pains in my legs after eating had dissipated quite a bit. I am also able to stand longer and walk a bit further before the lactic acid/leaden feeling in my legs sets in. I also don't experience quite as much next-day PEM and aching leg muscles after walking/standing, though I'm still housebound and very symptomatic.

In any case, for those with SFN and ME/CFS, it might make sense to have your vitamin E level checked or just try a vitamin E supplement to see if it helps with symptoms.
 

Pyrrhus

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junkcrap50

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In any case, I started taking a vitamin E supplement and about a week later noticed that the neuropathic stabbing pains in my legs after eating had dissipated quite a bit. I am also able to stand longer and walk a bit further before the lactic acid/leaden feeling in my legs sets in. I also don't experience quite as much next-day PEM and aching leg muscles after walking/standing, though I'm still housebound and very symptomatic.
Very interesting. What dosages of Vit. E are you taking? What do you mean "sub-normal?" Do you mean low, outside reference range? Or do you mean low-normal, within reference range but close to the lower limit?
 

minimus

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What dosages of Vit. E are you taking? What do you mean "sub-normal?" Do you mean low, outside reference range? Or do you mean low-normal, within reference range but close to the lower limit?
@junkcrap50 My beta and gamma tocopherol level was 0.3, below the reference range of 0.5-5.5 mg/L. My alpha tocopherol level was 9, inside but at the low end of the reference range of 7-25.1 mg/L.

@brenda I have been taking one gel cap a day of A.C. Grace “Unique E“, which contains 400 IU of alpha tocopherol and a mix of beta, delta, and gamma tocopherols, but the amount of each is not specified.

Because the cap is made from gelatin, I just pierce it and squeeze the contents into my mouth, as gelatin makes my MCAS symptoms worse.
 

Alvin2

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I tried a mixed source high dose vitamin E which had no effect but i don't have SFN afaik.

There is not a lot of data on what a recommended RDI is and if there are complication requiring a higher amount than that is an extra wrinkle. I am glad that such a simple supplement is helping you though.

I don't know if we can get vitamin E levels this tested in my location, but its a relatively cheap thing for anyone to try.
 

Irat

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Isn't vit E only depleted when Vit C is used up ? Hmm I would no go down the root of exogenous antioxidants orally ,others than food.

Isn't it a double edged sword in cellular redox state ?

I can t remember the research I read on Dr.jack Kruse and others ,and no strengh looking it up again ,mabey someone else can clarify it ??
 

brenda

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@brenda I have been taking one gel cap a day of A.C. Grace “Unique E“, which contains 400 IU of alpha tocopherol and a mix of beta, delta, and gamma tocopherols, but the amount of each is not specified.
Thanks. That's the one I am on, but topically 1-2 x per week
 
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@minimus 400 IUs of alpha tocopherol is around 20x the reasonable daily target and will definitely overshadow your other forms of E in terms of consumption over time.

The transporter associated with vitamin E circulation, alpha-tocopherol transfer protein (α-TTP) has a hugely higher affinity for alpha-tocopherol than for any other form of tocopherol or tocotrienol. Naturally, your diet is higher in gamma-tocopherol, and so this mechanism is useful as you want to retain as much a-T as you can.

When you supplement huge amounts of a-T you saturate the transporter (because of its high affinity for a-T) and thus diminish your transport of other, also useful, E subtypes. Please see this video for more details: link

You'd probably be best off taking something like Toco-Sorb from Jarrow, or California Gold Nutrition Tocotrienol Complex (what I take because of the price - pretty much the same as the Jarrow content wise).