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new to this forum need advice on b12 and folate levels

Naelith profile image
4 Replies

Hi

I have hashimotos and because of this have my folate and vitamin b12 checked quiet often. I have had a recent blood test which showed a deficiency in folate 2.79 (2.91 - 50). my vitamin b12 are in range at 178 (140 - 724) so the doctor won't do anything with this however I do have symptoms.

I have arranged a private blood test for active b12 as I am right at the bottom of the range, can anyone advise me on what else I could be doing.

I can't think properly half the time and do silly things like trying to put the kettle in the fridge, I also have pins and needles in hands and feet, exhausted all the time, weakness in my muscles and loads more. As I have previously been diagnosed wth fibromyalgia everything is always just put down to this.

thanks

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Naelith profile image
Naelith
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Gambit62 profile image
Gambit62Administrator

serum B12 cannot be used as a single measure as to whether your B12 levels are adequate - it isn't a gold standard test and will miss 25% of people who are B12 deficient (but also catch 5% who aren't if used as a single measure. There is a high probability, given how low your result is in the range, that you could be one of the 25% that is missed.

active B12 may look at just that proportion of B12 in your blood that is bound to the protein that enables it to get into your cells but it is still looking at what is going on in your blood, rather than telling you what is going on in your cells - so may also come back inconclusive

tests that can help clarify if your cells are being affected by a B12 deficiency are MMA and homocysteine - if you are folate deficient homocysteine isn't going to help because that will be raised by folate deficiency - so leaves you with MMA.

MMA and homocysteine are waste products that the body can't recycle into useful building blocks for key processes unless it has enough B12.

MMA can be raised by other things - eg kidney conditions - so if you need to look at those at the same time.

Are you sure that your thyroid is under control? because that could also be causing the symptoms you mention, which does make evaluating symptoms rather difficult.

There are a number of things that can cause a B12 absorption problem (assuming that you aren't a vegan so unlikely to be dietary) - such as PA, coeliacs, h pylori infection, drug interactions, low stomach acidity ...

suggest that you point your GP towards the BCSH guidelines on diagnosis and treatment of folate and B12 deficiency - these state that, in the presence of a discrepancy between test scores and symptoms, symptoms should take precedence, particularly if there are neurological symptoms. They also state that folate deficiency is likely to be caused by an absorption problem, which makes the presence of both folate and B12 deficiency quite likely.

onlinelibrary.wiley.com/doi...

Your GP can also access these through the BNF.

Naelith profile image
Naelith in reply to Gambit62

Thank you I will look into the other tests, my thyroid isn’t under control unfortunately my tsh isn’t coming down even with treatment and my antibodies are rising so my dose keeps getting upped at the minute, I’m having high blood glucose readings at the moment as well so I think that might be what is confusing everything

Gambit62 profile image
Gambit62Administrator in reply to Naelith

hope you can work with your GP. The tack to take is likely to be around acknowledging the difficulties because of overlapping symptoms but also making sure that they are aware that having hashi's means that there is an increased probability that there is more than one thing going on. This may mean that it is easier to tackle issues one at a time - that doesn't necessarily mean that one issue will be resolved but if treating it doesn't result in a positive response then it suggest moving on to the next.

kate111a profile image
kate111a

when my folate levels came back as low and my B12 was just at the lower end of the range my doctor treated me with folate (Folic Acid) he wouldn't treat the B12 even tho it just made it into the accepted range by a few points, I thought it strange prescribing me Folic Acid as I'm 60 and always thought Folic Acid was something only expectant mothers took, I've since learned that if your Folate levels are low then none of your B range will work as they should, also the script I received was 12 times stronger than the dosage given to expectant mothers, I have to say it has made a difference especially to the breathlessness and level of tiredness,

I purchased a sublingual B12 spray which I now use as well, both of these have made a difference to my level of energy etc.

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