Pernicious Anaemia Society

Worried

Hi everyone, just new, I'm not sure what to do about my b12, the blood test said it was 160 pmol/L. The doctor thinks it's in the range (150-800) so is not worried about it, the thing is I have copies of old blood tests from 1992 (b12 was 348 pmol/L, and the year 2000 and it was 298pmol/L, I think it should be a lot higher than 160. I also have the coeliac gene and MTHFR gene A1298c, I have anxiety and depression and dystonia with my neck which I would'nt be surprised if was caused by low b12. I've started to take b12 tablets, a 1/4 of a 1000mcg because I'm sensitive to a lot of things, but now I'm getting sore joints because I read b12 builds up uric acid so I don' t know what to do. Thanks for listening

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Ask for the antibodies test (GPC and IF). The results are unreliable but if you get a positive then you will have a proper diagnosis. In other words, try to find out why your B12 levels have dropped. H.Pylori is a bacteria causing ulcers and shoiuld also be tested for.

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Hi...thanks for reply. I had a test done years ago for Parietal cell ABS and it was 1:40 it's supposed to be less than 1:10 so I have stomach cell damage from milk and grain allergies because of the coeliac, it's probably getting worse the older I get, I have also got malabsorbtion so that would be another reason. I had H.Pylori test done, it was negative. I just want to get the b12 levels back up but worried about the side effects because it is a stimulant and my anxiety gets worse for a day or two when I'm taking 250mcg so I take it every two or three days but I don't know if that is enough. My homocysteine was 12.1. Do you know if that is too high?

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Sorry, I have no idea.

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I have read that Homocysteine is good around 6/7 - certainly in single figures 😊

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Thanks for that...I will have to get mine down

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.... with B12 - B Vits and Betaine HCL 😊

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Your doctor is supremely casual with your well-being and with his use of his small amount of knowledge. We simply cannot rely on the medical profession's judgement in this matter. I take sublingual 5000iu. I think that the pain you are experiencing emotionally and in your joints is probably because you are not taking enough and because it takes a while to reverse the problem and yours is probably getting worse. Keep a diary so that you don't react on a short term basis to symptoms you experience and stop and start the b12. (I found I had to do this with my B12 and thyroid meds because I lacked the memory and judgement to evaluate their effect without a diary). Be sure that you are not doing anything to further reduce your B12, such as taking various medications that have that effect. (Look up meds that affect B12.)

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Hi...thanks for reply and information. I know you can't rely on doctors in this case...every test I've had I've had to ask for. Have you heard of a timed release b12 at all, I read somewhere that someone took it and it helped Dystonia

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If you have problems with absorption then it is very likely the cause of your falling B12 levels. Did your doctor test you for folate, ferritin & Vit D? We need the folate and ferritin to work in balance with the B12 that you do have. Low VitD can also cause aches and pains.

Taking the B12 as tablets may not be helping due to your absorption issues. There are sublingual sprays and dissolvable lozenges that could work better for you. I do think your doctor should be giving you injections though, as your levels are consistently falling.

Ps my GP began treatment for my low B12 when my level was 176. They should take all your symptoms into account.

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Hi...nice of you to reply. I had a Folate test and that was really high 1050 nmol/L and that is because I have the MTHFR gene and I can't process folic acid (which is B9) so it just stays in the blood. I have to take folinic acid instead because it is a more natural form of folic acid or eat lots of green leafy vegetables. I will have to get my Vit. D done, I hav'nt done that one yet. Thanks for that

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Three members of my family (my mother, my father and my partner) had advanced pernicious anaemia which means that they were demylinating due to inability to absorb B12 normally - loss of balance, failing legs, bafflement and memory loss. Although my mother's case had advanced too far to entirely reverse, both she and my partner have made huge progress by taking B12 sublingually 5000iu daily. My father (now 93) reversed his memory problems although peripheral neuritis persisted. Later he had a heart attack but has done very well possibly due to his 100% oxygenation which has to be related to the B12 impact on haemoglobin. I had early symptoms of B12 deficiency - fatigue, memory and balance problems, although I had blood levels of about 400; these symptoms greatly improved with sublingual B12. I no longer suffer from vertigo.

Prior to getting the sublingual variety of B12, I used to give everyone injections as often as they wanted (possible in Australia), but stopped these because of the success of these pills which you need to hold between cheek and gum until they dissolve. The whole family has levels of about 1,400 now, to the professed horror of the same GPs who failed to pay attention when the levels were clinically low among three of us but don't remember that. There is a very comprehensive article about B12 deficiency with links to educational videos and a history of treatment here: candobetter.net/node/4463, "Incurable Alzheimers or curable B12 deficiency? An epidemic of wilful medical ignorance."

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Hi...thanks for sharing your story, it's scary is'nt it that we have to work it all out for ourselves...it would take me a long time to reach your levels of b12 but I want to at least get to 500pmol/L

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How long were the levels up to normal range before the memory and neurological pain was resolved?

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Thanks for the link - very interesting reading for us all!

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Stayfocused - are you UK based - if so write to your GP pointing them at the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiency which they can access through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

particularly draw their attention to the following

a) serum B12 is not a gold standard test and using it as a single measure will result in missing 25% who are deficient (and picking up 5% who aren't) so evaluation of symptoms is important

b) 25% of people who are B12 deficient do not present with macrocytosis - so whilst it is a common symptom, its absence does not rule out B12 deficiency

c) recommendation is not to delay B12 treatment, particularly if there are neurological symptoms.

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Hi....thanks for reply....no.. I'm in Australia, I just think the level they have set at 150 pmol/L for b12 as the lower end of normal range is way too low...in Japan it's between 500-550. I also have Atrial fibrilation and when I took 250mcg of b12 for a few weeks it stopped for a month, I read that it happened to someone else as well. Anyway thanks for info I will look into it

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the same as above applies in terms of facts to share with your GP - they may still have access to the UK guidelines.

If you are in Australia you can get injectable B12 over the counter - though many pharmacies don't seem to be aware of that.

Please not that the level used in Japan only applies if you are systematic - so it would be better to say that their guidelines flag the possibility of B12 deficiency in the normal range better than many other countries.

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Hello stay focused. I can understand your concerns because I'm also sensitive to a lot of medications. I am taking a daily maintenance dose of 250 micrograms of sublingualB12 by jarrow formula. I am not concerned about it building up in my body because it is water soluble. What I am concerned about is that it can cause me to be very restless and jittery. In order to prevent, that I take it after I exercise for one and a half hours in the morning. I always have a burst of energy after taking B12 and so the exercise uses up that energy. I also take it right after breakfast because even though it's sublingual it does affect my stomach and it will make me a little nauseous if I don't have something on my stomach. I just know that I have a very sensitive body and I just pay attention to that. Good luck to you. By the way, I hold the sublingual tablet under my tongue until it dissolves. Sometimes it takes 20 minutes to dissolve and other times it can take more than 30 minutes to dissolve.

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Hi...thanks for reply, yes I am also scared of the anxiety b12 causes as I am already a very anxious person, it's a good idea about the exercise to burn it off...I might have to try that

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Hi stayfocussed. Every lab has it's own normal range, but 160 is too low. My lab says 220-910. Mine was 92. They then checked my instrinic factor which range is 0.0-1.0. Mine was 98. That diagnosed me with penicous anemia. Because my stomach won't absorb and distribute b12, they started me on daily shots now weekly for life. My b12 level has been around 600 for 3 mos now and that's where my oncologist wants it. It seems our western culture doesn't pay a lot of attention to lower levels of b12 where the eastern culture believes anything under 400 too low. It's funny you mention MTHFR gene mutation. I just found out I have the same thing and suffer from anxiety. I've been thru a lot with bone tumors and just lost my right leg so stress has been thru the roof for me. Have they done any other bloodwork? Have they checked folate and or instrinic factor? When mine was low, it was awful. I was off balance, couldn't think straight, blurred vision, heart palapatations and was overly upset about minor things. Those symptoms have been relieved with the injections. My advice is to talk with your doc. Write down your symptoms and concerns and ask for further testing. If your doc doesn't feel it nessesary, I'd find another doc. The MTHFR gene mutation effects the B cells and folate. Very important to stay on top of this and raise your b12 levels. I would probably stop taking supplements until you get tested. Although you can't OD on b12, it would alter you labs. Take care and plz let me know what happens

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Hi...so nice of you to reply, I agree 160 is too low especially when I used to be 348 years ago. It seems everyone with MTHFR gene has anxiety because we cannot process folic acid...we need folinic acid. Have you read the 'The Elisa Black Story', you can google it, she has that gene but fixed it with vitamins. I am really sorry you are having such a hard time and I wish you all the best.

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Hi Stayfocussed. Thank you so much for your comment. I checked out the Elisa Black story. I couldnt believe it. I go to my primary in the morn and will talk about it. I wrote down folinic acid as well as a script to change my injectables to the Methol b12. It makes so much sense with the MTHFR gene mutation and my anxiety. I also read that they suggest 2 weekly shots instead of one to better control absorption. Im hoping it changes things. I can hardly wait to try these new meds and routine.

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Sorry Wowo23...I missed this reply...I also take methyl b12 but only small amounts. I think with the folinic acid it works better if you are an overmethylator and not so well with undermethylator, anway you might be able to google that and see which one you are. Take care

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