I'm new here. This is my first post. I hope someone who knows more than I do can help. I'm at my wits' end.
Since about 1990, when I was 19, I have had consistent strange symptoms which have recently gotten much worse: tingling and numbness in hands and feet, sore mouth, sore tongue, digestive issues, connective tissue problems (joint pain, hernia, periodontal disease), dryness in mouth, dry elbows.
Since that time, various doctors have tested my serum B12 and folate about 11 times... since a lot of these symptoms seem to correlate to B12 deficiency.
The strange thing is, these serum numbers have always been EXTREMELY HIGH not LOW!
The LOWEST that number for B12 has been 850 pg/ml--- and it has been as high as 2200 pg/ml. 1450, 1600, 2200, 850 and so on. Likewise, serum folate has always been above 20 ng/ml, which is the high end of the testing range. That is, that value might have been higher, but the tests don't measure that high.
These values were almost always while NOT taking a supplement.
My doctors have always blown these results off, saying that high values don't mean anything, only low values matter.
I've never had pernicious anemia per se, though on occasion my hematocrit has been high, as has MCV--- but these have not been consistent findings. My bleeding times--- TPP and PT--- have also been high, though I don't have hemophilia.
Does anyone have any thoughts about why someone can have extremely high serum B12 and folate but yet symptoms similar to B12 deficiency?
Is there a faulty gene I don't know about? Some transporter protein that isn't working properly?
Any help would be appreciated!
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PurpleBoy
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when you say that the results were when you weren't supplementing can you clarify how long you weren't supplementing and whether the supplementation actually had any effect.
You would need to stop supplementing B12 (if taking high dose supplements) for something like 4-6 months to be sure of getting a baseline - and even then there is a possibility that you might not achieve a baseline.
Please note that pernicious anaemia is a bit of a misnomer - it is actually an auto-immune disorder in the gut that leads to a B12 deficiency. One potential symptom of either B12 or folate deficiency is a type of anaemia called macrocytic anaemia in which red blood cells are larger and rounder than they should be.
There is a condition called functional B12 deficiency - high serum B12 but all the symptoms of B12 deficiency - and it is possible to oversupplement on folate with the result that some processes that involve methylation stop working properly. The lack of elevated homocysteine and MMA would suggest that whatever is going on it isn't functional B12 deficiency though there are some haematologists who think that MMA and homocysteine may not tell the whole story.
The genetics involved in processing B12 is off topic for this forum, but there are some genetic conditions that make mean processes needing B12 don't run very efficiently. You may want to look into DNA testing but would suggest that you speak to a genetic counsellor - and also find out if other members of the family have had problems in the past.
When I say "weren't supplementing" I mean not taking any B12 or B complex pills. I can't recall the timing on when I stopped or what back when I was 19, but most recently I know for absolute 100% certainty that I was not supplementing with B12 for over two years and the levels were still 1200 pg/ml.
I had never heard that supplementing with folate will cause methylation processes to stop working properly. Can you provide some research I could read on that?
It is curious that the recent worsening in my symptoms began about 1 month after starting on 400 ug/g of folinic acid. The strange thing is, the folinic acid seemed to improve a lot of other symptoms, but the numbness and burning in hands and feet got much worse.
Would you know where I might find a genetic counselor?
Most average docs have no idea what is going on with me.
2 years without B12 should be long enough to get a baseline - but some people do retain B12 for a much longer time. The early work on how long injectable B12 was retained showed that whilst the average was a month or two (depending on type) some people would still show high B12 levels years later.
on folate - the process is known as 'the folate trap' - I don't have anything actually bookmarked on it I'm afraid.
I don't actually know any genetic counsellors - there are some who work for the NHS in the UK and if you were referred for DNA sequencing you should be referred to one.
As above - genetic conditions relating to B12 are really off topic for this forum
Yes! I had similar symptoms for at least 5-6 months and before that years of just tired, then developed neuropathy in feet, celiac, etc. My b12 when tested was way over 2,000 and folate was fine, however my mcv test was a little low..I ask Dr. What that meant and he told me my blood cells were just fat. He tested for diabetes, Lyme disease and my tests were all ok with him ..but I felt terrible. He gave me b13 shots for 3 days , then saw my high b12 level and stopped them. I was devastated. Five weeks later I went back to Dr telling him I was getting much weaker, out of breath, nausea, etc. I then ask if the MTHFR blood test he did came back. He checked and said "yes, you have both gene mutations...variants". Bingo!!! I think he forgot to check that test all together. My intrinsic factor test came back ok, but that test is notorious for being wrong 50 percent of the time. I insisted we start B12 shots again, and I got first one that day. I definitely have pernicious anemia. Also, the MTHFR test will affect the b13 blood test and show it very high Look up that test.. very interesting. You can also have a homosysteine blood test done...that may also be high due to low B12. I had to insist he begin the shots for me and thank goodness he has. I'm on shot #6 today and am feeling better. Good luck and don't give up, your body is begging for help.
Thank you so much for your input! You're the first person who I know who has had chronically high vitamin B12 and normal folate.
Can you share the research on MTHFR that shows it is related to high B12? I would love to read it!
I recently read that there are other genes which might be associated with high serum B12--- genes having to do with B12 transport. One protein is called Holo-Transcobalamin. This is a protein in the blood that transports B12 into cells. Only about 25% of B12 is attached to HoloTC, though. The other 75% in the blood is not able to transfer into cells but is still there.
So, in theory, it is possible to have a high total B12 level but LOW HoloTC. In this case, the usual B12 blood test would show you have normal or high serum B12--- but yet you could still show signs of cellular deficiency because your B12 transport protein is faulty!
Oh my goodness! I just joined this group in hopes of help for my 16 year old son. He typically has serum b12 tests come back at 1000+ but normal other tests. He does have MTHFR double A129C. At age 3 he tested super high for mercury, and we started mB12 shots. Now I have to fight with the doctors because they do not understand that he has excess because he cannot methylate properly. So frustrating.
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