Not sure if this is something anyone has experienced but looking for any advice.
I went to the doctors in 2014 on the advice of my boss who thought I had the same symptoms as her extreme fatigue, pale skin, dizziness and faintness. She was b12 deficent and getting b12 injections. Long story short they found that I actually extremely high b12 blood results around 1800ng with the normal for the lab being max of 660ng. None of the doctors i seen in the practice had come across this before and I was referred to a specialist at the hospital who put me through a number of tests, more for the fatigue and dizziness. The only thing they found was a small liesion on my liver that they said was probably there from birth. There were no other blood tests or much talk of the high b12 and still 3 years later my b12 is still around 1700ng. Now though the dizziness has mostly subsided but I know have gastric issues like bloating and a feeling of fullness after a normal meal. I have moved home and at a new doctors and they too have said they haven't seen anything like it and don't know why it is so high but don't seem too fazed about it even though I don't feel very well. Seems nobody knows and nobody really cares why my body isn't absorbing or getting rid of the excess b12.
I have only the last 3 months stopped eating meat and occasionally eat fish and at first I started to feel better but now back to having stomach issues.
I have seen some literature about false readings etc and wondering what tests should I ask to be done. Has anyone came across this before or had a high reading? I am constantly asked if I take supplements which I never have. Very frustrating and my stomch bloating and pains are becoming a daily occurrence so I will be making another app with my GP soon as it is effecting my daily life.
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Dmcn85
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Hi Dmcn85 Do you know what your serum Folate level is?
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
I'm not a medically trained person but there are others on here who will be able to give you good advice
Hi thanks for replying. I don't know what it is currently but the results I have from a few year back my folate was 8.1 with the range for the lab being 4.6-18.7 stomach issues at the minute are the killer for me, and I could sleep 24/7 and still be tired. I'm only 32 and would say im not an athlete but I do a few fitness classes a week and try to eat sensibly.
There was a haematology presentation which was posted here recently which mentioned high B12, I'm not sure how to post it here though, it was by a Dr. Simona Deplano of Hammersmith Hospital. You might find it in a Google search? It was called Diagnosis and Management of Vitamin B12 Disorders.
by far the most common cause of high B12 is going to be treatment for B12 absorption problems.
Levels in blood are only one part of the picture. There aren't any issues around B12 being toxic but there is a phenomenon called 'functional B12 deficiency - which seems to be at least in part down to a reaction some people have to raised B12 levels in their blood - they basically respond by shutting down the mechanism that allows B12 to pass from blood to cells - like building a huge damn on a river that stops water getting to anywhere downstream of the damn. Rather counter-intuitively raising B12 levels can resolve the problem - to go back to the dam analogy it is like letting the water behind the dam build up to the point where just enough trickles over the top.
Tests that can help to clarify if a functional B12 deficiency is going on are MMA and homocysteine - which are looking at levels of a couple of nasties that will build up if your cells don't have enough B12 to recycle them into useful building blocks.
Part of the reaction that causes functional B12 deficiency seems to be that the B12 then gets retained longer in the blood as well.
Unfortunately there isn't really much literature out there or many studies that I've come across in relation to functional deficiency and its treatment.
It may also be worth getting active B12 done as well as serum B12 - active B12 is B12 bound to a protein that enables it to pass from blood to cell. IN general it accounts for 20% of the bB12 in your blood but it may also be that there is something (probably genetic) going on that is affecting this ratio, meaning that you may not be as efficient at processing B12.
Liver problems can, I think, cause the liver to dump it's B12 stores leading to elevated B12 which could then kick off the problems above.
Your tummy problems are something that PA patents often have , due to the low/no stomach acid (Achlorhydria/Hypochlorhydria) that comes with PA.i had this and overcame the problem with probiotics which help the resulting upset stomach flora . I used Symprove which I eventually gave up because of the expense . But it helped enormously . I now resort to home made red cabbage organic sauerkraut ( with some onion , herbs and spices ) recipes on internet . This is cheap and tasty ! But any fermented vegs would do . It is an acquired taste ! I only found this out after seeing a gastroenterologist . I was insisting on a test for stomach acid , and he got a bit fed up and told me I couldn't have one , but that PA patients have low/no stomach acid . My GP didn't know this . I had to find a remedy myself . In fact my GP wanted me to take Gavescon which would have been the worst thing possible . Anyhow - no more tummy problems now ! Some people with this problem find help with drinks of diluted organic cider vinegar with mother . Some drink lime juice before meals , and bad cases find that betaine Hydrochloric acid capsules with pepsin help taken with meals , especially meat meals . Yours is a very unusual case the high B12 . Perhaps it's all floating round in your blood and not getting into your cells for some reason I had a very high blood serum B12 because of supplementing with tablets and wearing patches, when I was diagnosed with PA . Have you ever been tested for Intrinsic Factor Antibodies ? ( it's a very unreliable test actually , only about 50% accurate but it maybe worth a try ) Sorry about rambling so . Don't know if my ramblings are any help at all . But I was moved when I read your account Best wishes ,
I'm not too sure if I have had that intrinsic antibodies test but it is something I will ask about. I read in a letter I have from my old doctors where the lead there mentioned something about an antigastric antibodies test but not sure if my own doctor ever followed through with it. Think I would remember if she did.
I Had the intrinsic antibodies test. Came back negative. I've had several abdominal ultrasounds. All ok. Liver function tests normal. The conditions they look for with an unsupplemented high B12 are Myeloprolific conditions, certain types of Leukemia and also Liver disease. As all my other blood work is normal they don't think they should put me through a bone marrow test. The questions I was asked were, have I had sudden weight loss, extreme tiredness, any lumps in the body, any strong pain, and little purple dots on the skin. All of which I don't have. As a matter of fact I feel great. That's why I think there may be a connection with the SIBO (small intestinal Bacterial Overgrowth) as Dr G. Mouton points out in his article.
Flip me your doctors sound very good! I did have a lot of weight loss but that was due to me exercising like a maniac and eating better so I was trying for it. I did have random purple dots on my skin and went to the doctor but I cant remember if that was before or after the b12 thing came to light. They went away after a few days, they appeared all over my thigh on one leg was very strange. The tiredness was one of the main reason I went to the docs to start with.
Do remember that the Intrinsic Factor Antibody test is very unreliable. Very unreliable test . A positive result means you do have PA, but a negative result does NOT mean that you don't have it ! Terrible but true .
Symptoms are the important thing when diagnosing P.A.
Have you tried eliminating gluten ? I've found its intolerable, causing pain, bloating. My stomach isn't perfect without it but far better than I was.
I too had a very high B12 level last year just over 2000. I took a multi vitamin tablet daily, advised to stop that and the level came down to 1000. The Drs. didn't seem bothered even when it was at the highest level just said they were not concerned about it. I seem to be OK otherwise.
I think you'll find this link addresses some of your B12 issues. I have tested very high for B12 for nearly 3 years. I have never had B12 shots or supplements. I was referred to a Haematologist for a barrage of tests. All have come back normal. My active B12 was also high. If I'd never been tested for B12 I'd never have had to deal with this concern. I totally relate with you.
So does that mean the b12 is getting to where it needs to go ok? I might ask for this functional b12 test to see if the b12 is being used right or if it isnt being absorbed and i am actually possibly deficient. I see on these results that i have from a few years ago that the lead doctor at the practice said to test for antigastric antibodies but I don't remember ever have that test done. She seemed quite clued in unlike my own doctor who hadn't a clue. Medical marvel i've been called lol! And at the gym ive been asked to bottle it up lol!
Yes, me too! My doctors have never seen a case of this and I also work for doctors who have never come across it. It is quite rare apparently. I've thought of maybe trying a Naturopath as they test differently I think. It's really hard when they seem to be no answers.
I too have high B12, which the gp overlooked as well, these people are sickening me the way there leaving people to practically slowly die,
So I totally understand, I think it may have something to do with Diabetes, it can be a indication, and oh I am not on any supplements either, but also it may point to liver problems to!!!
Hi thanks for your reply. I get tested for diabetes all the time and im ok. Yea the liver thing, i have a 1.8cm "lesion" on my liver which they found and haven't checked or done a biopsy on lol! Makes you feel so good about the doctors here that they find stuff and just leave it at that.
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