Does anyone know anything about thiam... - Pernicious Anaemi...

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Does anyone know anything about thiamine?

poing profile image
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One of my long standing problems is that I am cold intolerant. It's not constant, there are some days when it is worse than others. I start to get very cold, and pretty soon after, my sense of wellbeing and ability to think rationally depart me. Feeling cold a lot of the time makes me tense, and when it's really bad it stops me from functioning at all.

Looking around for things that can affect thermogenesis, I came across iron, zinc, copper and thiamine (B1). As this is a group that knows about B12, and thiamine is one of the B vitamins, I wondered if anyone could tell me anything more about thiamine?

PS Before you say it's my thyroid, it's not...

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Hi,

You can find a lot of info on patient. co.uk, just type what ever into the search option they have.

See:

patient.co.uk/doctor/Beribe...

I did have a vitamin profile done privately and did have other B vitamin def etc. Many B vitamins need each other for metabolisme so its good to take a multy vitamin, Best not to take single vitamins as its important to keep a balance, not to much of one, can cause inbalances which then can cause other deficiencies say.

I do however think the coldness is in my case anyway is caused by a need for B12, after some 4 hours of a B12 jab I will warm up, even get flushed..Very cold usually before, often feels I'm using all my energy just to try to keep warm.

I hope this helps,

KInd regards,

Marre.

poing profile image
poing in reply to

Thanks. How did you get a vitamin profile done?

in reply topoing

Hi,

I paid for it privately at gdx.net/uk/.

Not realy worth the money in my case as I'm terrible at swallowing anything, but the heamatologist I saw explained its wise to take just a multy as many B vitamins (and others) need each other to be metabolised. If you give a lot of one you need more of the others say, but its best to keep things as much as you can in balance,

Kind regards,

Marre.

poing profile image
poing in reply to

I hate swallowing pills too :-(

When I do take B vitamins, it is a B complex that contains all of them, and I did okay on Floravital, which contains iron, B1, B2, B3 and B6, but it seems that things go to pot sooner or later when I stop taking the supplements (apart from sublingual B12 - my levels are still low so I keep taking that). But if I keep taking the supplements, maybe I'll never find out what's wrong? Not sure what to do.

in reply topoing

I must admit I'm a believer in stopping all supplements and then having proper investigations as to what is wrong and why. Without a proper diagnosis you will allways be scratching at trying this and that, but with no medical help..my daughter went off B12 jabs for 7 months and survived..it gave her the right diagnosis, and no chance now (I hope) for her to be taken off treatment, her B12 jabs are for life. I managed 5 years on wrong treatment, I survived, perhaps if diagnosed much earleir I'd not have problems with balance now, but I'm over 10 years older now, still doing fine, still improving in a way, or getting used to living with certain issues, but compared to my age group I do well, so not realy feel I've lost to much now, that I am getting the right treatment for me (with my own added supplies). But its so very different per person..it so depends on how you feel, life style and demands..my daughter was home for a bit, so could fall appart..one infection after the other, terribly scatty..its up to you, and what you can manage..very hard, only you can decide.Sorry I can not give you something more positive...

Marre.

Angel_of_the_North profile image
Angel_of_the_North

Apparently benfotiamine is a "better" (fat soluble) version of B1.

Hi there:

Take a look at the following link, starts with B1 the first in the Bs for neuropathy symptoms, written for the medical community in 1973 but interesting material, considering it is comprehensive for it includes myastenia gravis:

tldp.com/issue/11_00/klenne...

My current multivitamin has no minerals, but all Bs at 100 mcgs strength, plus choline and inositol. Currently I obtain minerals from using special type of sea salt: rose in colour. I also take B12 in sublingual strips at 5,000 mcgs.

I consider B1 as important as all other Bs, and have been taking multivitamin pills since a teenager.

Good luck,

mashby

Oops, forgot to mention that vitamins can be tested through specialized blood work, mostly offered by natural health doctors. It is comprehensive for it even reviews amino acids levels in a person s body, but cost prohibitive. Regimen is recommended after test results are received. Around Can$500 to 600, and not covered by any government or private health plan.

Last week I paid Can$130.- to be checked for acetylcholine receptor antibody test to confirm my neuropathy is not related to miastenia gravis, another immujne disorder like PA, also discussed in the paper I provided the link for above.

You might come across it offered in the UK by Googling. Or, you can start by checking the website for Nutrichem, here in Canada, and reviewing the information relative to test benefits,

and go on from there to Europe.

Kidsmomof9 profile image
Kidsmomof9

I have been diagnosed with a B1 deficiency in addition to B12, iron and vitamin D deficiency. I have had many neurological symptoms including feeling a " loss of self". This can be an emergent situation. Look into Wernicke's Encephalopathy. You don't have to be an alcoholic to have this condition. I start my infusions today, hoping for improvement. All you need is a simple blood test. I urge you to call your doctor now.

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