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Confused.

Candace_D profile image
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I'm new here, just trying to understand things. A little history on me. I was diagnosed with thyroid cancer (hurthle cell) in 2008 at 22 years old. Recently I have been diagnosed with mthfr mutation. My endocrinologist was wondering why I keep feeling fatigued and why I have to take what he considers a high dose of thyroid medicine so he tested antiparietal cell antibodies which came back elevated. I'm wondering if this means that I have pernicious anemia. I went to a different doctor and she checked my b12 levels which came back as 573 the range says 211-946. I have numbness in both of my big toes, bone pain that comes and goes, ringing in my ears that comes and goes, brain fog, and on most days a burning headache (best description I can give of it). She did start giving me b12 injections once a week and has now dropped it down to every other week. I have received 6 injections so far since the beginning of December. She also put me on a B- complex supplement. Even with the injections I'm still having all of these symptoms. Any insight would be greatly appreciated. Thank you so much for your time!

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Candace_D
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Candace_D profile image
Candace_D

I forgot to mention I have been very lightheaded lately as well.

Gambit62 profile image
Gambit62Administrator

There are a number of mutations associated with MTHFR - and they tend to have very little impact on metabolisation of B12 - much more effect on folate, and knock on effect on B12 from that as the two are used together in a lot of processes.

There is a huge overlap in the symptoms of B12 and folate deficiency, just because they are used together so much and all your symptoms could as easily be down to folate problems - though I'm guessing that there will be folate in the B complex you are taking

Have you had a full blood count and do you have signs of macrocytic anaemia? If this is causing symptoms then it will take a couple of months at least to put right.

573 is actually quite a good level for B12 without any supplementation and the PCA test is not a particularly reliable one - WHO doesn't recommend it for use in diagnosis of Pernicious Anaemia and it isn't recommended in the UK, but suspect you aren't UK based.

Candace_D profile image
Candace_D in reply to Gambit62

There is folate in the b complex I am taking. In September all of my b vitamins were low and that along with the mthfr mutation is why the dr wanted me taking a b complex.

My mcv was 94 the range being 79-97

Mch- 31.2 range 26.6 - 33

Rbc- 4.43 range 3.77-5.28

I am in the US

Gambit62 profile image
Gambit62Administrator in reply to Candace_D

some possible signs of macrocytosis, ie being towards the top end but certainly not a full blown case

looks like the variation you have impacts more on folate than on B12 from what I have been able to find on it.

Would go with fbirder 's suggestion of trying some methyl-folate.

Candace_D profile image
Candace_D

I have a Homozygous A1298C MTHFR mutation

mthfr.net/mthfr-a1298c-muta...

fbirder profile image
fbirder in reply to Candace_D

Ah, yes. That site!

At the top of the page it says that very little is known about that SNP. Which is sort of true. No studies have come up with anything conclusive. Either because there is nothing to find, or because studied haven't been large or thorough enough.

Unfortunately it then follows up with a load of baseless speculation about how it might be nasty.

However, just in case you may like to try taking 500 to 800 ug of methyl folate (available from Amazon) to see if that makes any difference. You could also see if you can get a homocysteine test to see if there is a problem.

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