About 8 years ago I was diagnosed with B12 deficiency and was prescribed tablets. A further blood test showed no improvement so started on injections. Negative test for PA.
I was having 3 monthly injections and then blood test showed folate deficiency so folic acid also prescribed.
In order to see if there were underlying issues, I was referred to gastrology and had colonoscopy and endoscopy. Good news - no evidence of any absorption issues. Bad news - all treatment that I was receiving stopped. No cause = no problem, I guess. This was about 6 years ago now.
Over the last 6 years, I have had low folate so back on the folic acid, then off, then on, then off, then kept on. Then taken off as I'd been on it for too long.
All B12 results have been within range in this time. Last year, I went back to GP with symptoms but normal results - diagnosed with depression (which I don't think was wrong) and started antidepressants this year.
New symptoms - sweating at night and cracking at the corners of my mouth. Blood test shows folate deficiency again but B12 still in range.
My question is: if I don't have any causes for vitamin deficiencies according to gastrology, how am I continuing to have low folate? And if I am still having vitamin deficiency in this, is it also likely that I'm still deficient in B12? I don't know how long the B12 from the injections would be stored.
I have an appointment on Tuesday with GP and last time I challenged these decisions (about 5 years ago), they diagnosed me with anxiety.
Any advice or links gratefully received!
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Crumpetfan
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200 - 350 that deficiency may be present and diagnosis is established by symptoms - see B12d.org.
>500 is generally agreed to be optimal
See NICE guidelines and BMJ excellence in treating b12 deficiency.
It is worth noting that serum b12 levels are not a particularly accurate diagnostic albeit they are probably the best measure when combined with signs and symptoms.
So using the above your levels are decreasing and deficiency is possible and becoming more likely if your levels continue to fall.
There is a b12 deficiency symptoms checker online.
You might find the PA site on health unlocked a useful resource.
I am not medically qualified and don't know if you have b12 deficiency but consideration of the possibility is probably warranted.
Possibly because you are not eating enough vegetables containing folate. You need a lot of dark green vegetable like sprouts, broccoli, green beans etc.
It would be interesting to know what your B12 test results are showing, just to know if it has been falling over time. Also whether there is any correlation with your seesawing folate deficiency. So worth getting a printout of results from your GP and checking.
When I was found to have B12 deficiency and treated, symptoms remained (hair loss, bleeding gums etc)- folate and ferritin were also found to be low and treated. Vitamin D was prescribed along with Raloxifene as osteoporosis of the spine was also discovered.
Thyroid can also struggle.
I too had split, sore and bleeding corners of my mouth. This must have been one of my first symptoms - and not something I'd recognised as being linked to B12 deficiency, because it had started about a decade before !
I was eventually sent to an Oral Medicine consultant about that. He tried several times to grow cultures from swabs - looking, he was certain, for either candida or staphylococcus. Nothing happened.
He told me to stop using any lip balms and just apply nipple cream (100% lanolin) twice a day - so I did that, once after cleaning my teeth in the morning and once after cleaning my teeth at night. You have to be careful - he suggested using the cream once from a spoon and then washing it - but I found the cream in the tube so thick that I could use a single application just with my finger, straight from the tube, without risk of contamination. All you need to do is wash your hands carefully first.
This worked within days for me and still does. If I stop using the cream for even a day or two, it returns. Control not cure. I have previously posted a photo of this condition on this forum. Don't obviously try this if you have a lanolin allergy (can't wear wool for example).
This condition is described as angular cheilitis. It clearly has a link with, or is a symptom of, B12 deficiency.
The Oral medicine consultant was at first concerned about my sky-high B12 (self injecting twice a week) - but after discussion with colleagues, has told me that I should ignore his previous advice to reduce injections - that I needed that amount of B12 and that tablets would not work for me.
We both learnt something useful from each other !
I'm passing this on in the hope that it helps you too.
Hello, Crumpetfan, some of what I mention here in reply to your question may be repeat stuff from others' response. So, first off when I was diagnosed my B12 levels were over 1,000, so doctors kept labeling me as hypochondriac. I kept reading everything I could about B12 and Pernicious Anemia. Finally, I went to see a hematologist, who said he would be shocked if I had PA. He eventually ordered an intrinsic factor test and I had PA. I've included a few facts from an article below which may help some.
Anti-intrinsic Factor Antibody Test
This is the test used to find out if the patient has ‘classic’ or ‘full-blown’ Pernicious Anemia. The test is classified as highly specific (>95%): if tested positive the patient will be deemed as having auto-immune Pernicious Anemia. However, the test has a low sensitivity (50-70%) which means that a negative result does not rule out Pernicious Anaemia.
The finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia”.
Important: A vitamin B12 injection within 48 hours of testing and, in some cases, within one to two weeks of testing can interfere with test results, so this test should either be done before treatment or at least a week or more after an injection.
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