I have a tingling/buzzing feeling in feet and hands. I also get a burning leg sensation at night in bed which I've always put down to menopause. The tingling is a lot worse since covid mid july. Also have treated underactive thyroid and fatigue. I'm aware that B12 should ideally be higher for T4 conversion.
GP did blood tests, the results for folate and B12 are:
Serum B12 431 ng/l (186-640)
Folate 6.9 (3.0-20)
I've had no call back from GP because of course these results are all in the range and hence 'normal - no action' (drives me mad!).
The folate seems low in range? I've read that low folate can make the B12 result inaccurate ie artificially high, also that B12 should be addressed before the low folate.
Is that right? I'm looking for some pointers before I get back in touch with GP surgery.
thanks
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lolajone
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Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
If yes to symptoms of B12 deficiency, you should get treatment even if serum B12 is normal range. Unfortunately Gps do not always have a good understanding of B12 deficiency.
This summary from a UK health document suggests treatment should be started if patient has symptoms even if deficiency is not obvious in test results.
Have you had any B12 supplements lately? If so, you can have a false normal/high serum B12 result. If not, your B12 looks OK although you have neurological symptoms of B12 deficiency. A low folate can cause a high B12, as B12 is not being used by the body. A covid infection or increase in T4 dose will suddenly demand more B12 and that could lead to B12 deficiency symptoms. If you want to be sure, you can test MMA or homocysteine. If they are high, then you have a B12 problem (homocysteine can be high with only folate high also). Alternately, you could try taking one or two B12 injections and see if your symptoms improve. If they do, then you have a B12 deficiency issue.
No I haven't supplemented B12 for ages. Folate is on a downward trend for me so if I supplement folate for a couple of weeks and then test B12 again it may actually be lower? I have had covid infection again recently so maybe I just need to supplement B12 again to get levels back up.
I think if you haven't supplemented with B12 lately, 431 is a fairly good number. Others may know more, but I have not seen this value of B12 causing issues, so my guess is that you may have some other issue as the primary cause, where B12 supplementation can sometimes help, so you can definitely do some B12 supplementation (for e.g. monthly injections or daily high-dose tablets - for e.g. 1000-2000mcg/day).
How is your blood sugar? High blood sugars can also cause this. Some viruses, including Covid, are known to cause or aggravate neurological issues, which seems to be happening with you. My suggestion is to consult a neurologist for a proper diagnosis.
There's a lot of information in my posts so might be best to read a bit every day over a couple of weeks so it's not so overwhelming.
Some links may have details that could be upsetting.
In a person with both B12 deficiency and folate deficiency, treatment for B12 deficiency should be started first.
From personal experience, I can tell you it's possible to have severe B12 deficiency symptoms with normal range serum B12. I had one serum b12 result well below range but rest were 300 - 500 ng/L and I developed dementia symptoms and spinal symptoms (had at least 50 typical symptoms at one point).
Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
I'm not a scientist or health professional but I think in someone with enlarged red blood cells ( megaloblastic anaemia) giving folate will mean red blood cells return to normal size but the neurological effects of B12 deficiency can continue.
NICE link below outlines recommended treatment for B12 deficiency and folate deficiency in UK and when a person with B12 or folate deficiency should be referred to a
neurologist
haematologist
gastro-enterologist
Have you been referred to any of these?
It includes the quote
"Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop."
Another quote from the same document "Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
Treatment
It's vital to get adequate treatment. Inadequate treatment can lead to permanent neurological damage. In severe cases the spinal cord can be damaged. I suspect many UK GPs do not know the potentially severe consequences of B12 and folate deficiencies.
PAS (Pernicious Anaemia Society) have a leaflet about SACD, sub acute combined degeneration of the spinal cord.
NICE guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac. If you were tested in past and got a negative result, check your GP followed recommended diagnostic process, some don't....
A person with coeliac disease may get a negative result in usual tTG IgA test if
1) they have IgA deficiency
IgA is an immunoglobulin.
2) they were not eating enough gluten prior to blood being tested.
Hi I'm trying to get a GP appointment as the tingling issues are not resolving. Since last posting here it was suggested (over on the thyroid forum) that I get some iron testing done. I used Monitor my Health which included folate and Active B12. Results showed folate had increased to 13.3 ug/l (3-20) from the 6.9 above. The Active B12 result was 69 pmol/l (38-210). Iron results were ok.
I suppose the question is - is this a low result for Active B12?
Thank you for all the links you provided I'm thinking that if the active result is not an issue that I start oral supplements. Or because of the tingling do I push for further investigation before supplementing so as not to skew anything. I have read that active below 70 may be an issue (I'm just below).
Impossible to get GP appt it will be a battle.
I'm feeling paralysed with indecision as to whether to start supplementing, do you have any thoughts?
Might be a good idea to post your update on a new thread as more people will see it.
I'm not a health professional.
If you have the symptoms of B12 deficiency, my understanding is that you should be treated even if serum B12 is within normal range and with tingling ( a neuro symptom) I would expect you to be on the treatment pattern "For those with neurological involvement" outlines in link below.
Summary of BSH Cobalamin and Folate Guidelines states
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
It suggests that doctors should consider continuing treatment in people who have shown a clinical response to B12 treatment ( meaning their symptoms have improved) even if results of tests such as MMA, homocysteine and Active B12 (holotranscobalamin) are within normal range.
My personal opinion is that doctors should go more by symptoms than test results.
Time is of the essence in treating B12 deficiency. There have been forum members who were diagnosed with SACD, sub acute combined degeneration of the spinal cord.
Some UK forum members resort to treating themselves if NHS treatment is not enough. Some try high dose oral tablets but these don't work for some, they do very little for me. Some get B12 injections from a private GP or beauty salon and some as a last resort try self injection(SI). There is a pinned post about this.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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