Advice please

Hi I did post a good while back but seem to be getting more symptoms which I think could be B12 related. My initial B12 level was around the 300 mark when tested along with thyroid. I then started taking sublingual. Test about a year and half ago was 1799 on a range up to 900. This wasnt questioned or asked if I supplemented by a gp. Recently I am experiencing strange feeling in my arm like elastic bands pinging along with cold rushes. My right leg has weird stabbing pains. Have also been having headaches almost every other day some short stabbing pains in right side of head or right ear but not inside my ear. My hands are sore and seem to have difficulty with buttons zips etc. Does any of this sound B12 related. If I stay off sublingual for a few wks would this be ok for the antibody tests to see if there is an absorption issue or will the results still be skewed? I already have 2 auto immune conditions. Sorry for long post any advice appreciated. Thanks

25 Replies

  • With serum levels that high on sublingual supplements I would say that it's unlikely you have an absorption problem. But if you do want to be tested for anti-IF antibodies you'd only need to stop for a few days. Don't forget, the test gives a negative result for half of people with PA.

    If I were you I'd get a referral to a neurologist. There are many possible causes of your symptoms and it doesn't sound as if it is B12 that is the cause (otherwise you'd expect symptoms to improve rather than get worse).

  • Symptoms wouldnt improve if I wasnt absorbing the B12 tho which I think may be the case as I also have tinnitus too and hypoglycemia. I know there are a few symptoms I prob don't have but I feel a lot of my symptoms are and my initial test was on the low side. I will opt for the antibody test given I already have 2 auto immune conditions. Thanks for your advice x

  • If you weren't absorbing B12 then your serum levels wouldn't be so high.

    If you are sure that B12 is the problem then you'd be better off with an MMA test. This will show whether or not there is sufficient B12 getting into the cells. If MMA levels are not raised then you do have plenty of B12 getting where it needs to be.

    I still think it's most likely that your symptoms are due to another cause. There are lots of possible reasons for it and a neurologist is the best person to figure it out.

  • I must be gettimg mixed info from diff sites I was under the impression it was probably showing high because its sitting in the blood and not getting to cell level?! Will an MMA be valid while on supplements? Im due to see doc in 3 wks and i havent had any in almost a wk. He is sending me for an MRI due to nerve pain in my head and ear but I wanted to confirm or rule out a B12 issue also x

  • What you describe (high blood levels, but not enough in the cell) is termed a functional B12 deficiency. It's not unheard of but it's far from common. If you want to show that you have a functional deficiency then you need to show that there's not enough in the cell despite high blood levels. The MMA test will show if there's not enough in the cell - so to prove a functional deficiency you'd need to do that test with high blood levels - i.e., while still supplementing.

    But it's much, much more likely that your symptoms aren't down to a B12 deficiency but something else.

  • Looking at your previous posts Kirsty on this and thyroid UK, as well as taking into consideration your first test result, two other autoimmune diseases, history and all symptoms, it seems highly likely that you are at risk of PA, with 'leaky gut' the cause.

    It may help to read the post I responded to this morning as in many ways it could also be relevant, although my understanding is that, as with injections, if you have been supplementing with sublinguals and do have PA, this can show a high result regardless of whether treatment is completely effective:

  • Thanks so much Polaris. Am.I best to push for both antibody tests then given my history? Altho I believe these could show negative also 😔.

  • I'm afraid you're right Kirsty - there is a high chance of it coming back negative and I think I remember reading that Martyn Hooper was tested three times.

    This is what he had to say in the House of Lords in June of last year:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA."

  • Oh the joys! Another battle! Took me long enough for the thyroid diagnosis despite being convinced for about 20 years! Finally my TSH backed me up! Didnt have reactive hypoglycemia either till almost 2 years of telling them I had blood sugar issues and a GTT proved it. Will try and battle through this one and fc I get a positive or at least a trial to see if it alleviates symptoms. Thanks for your replies and advice xx

  • Ps

    This is what the BCSH guidelines suggest re. these tests:

    "Pernicious anaemia is one of a number of autoimmune diseases, including Hashimito disease, type 1 diabetes, vitiligo and hypoadrenalism, which may coexist together. Antibodies against specific tissue antigens can help to diagnose specific conditions.

    Pernicious anaemia is characteristically diagnosed by the presence of anti-intrinsic factor antibodies (anti-IFABs). However, autoimmune profiles, performed in patients as part of the overall assessment of various endocrinopathies and other autoimmune disorders, can reveal antibodies that may be associated with pernicious anaemia (anti-IFAB, anti-parietal cell antibody), raising the possibility of co-existent pernicious anaemia. During investigation of pernicious anaemia, other autoimmune disorders may be found to co-exist, particularly thyroid disease and type 1 diabetes, and it has been suggested that investigation for these should be considered. There are no guidelines on screening for pernicious anaemia in other autoimmune disorders and each case has to be judged on individual clinical features."

  • Thanks again for all this info...very much appreciated x

  • Good luck in getting a diagnosis and treatment - not easy......x

  • Just thinking do I need the MMA test or just the 2 antibody? Sorry brain fog kicking in today 😔 x

  • A difficult one 🤔

    Given history of autoimmune, a serum B12 result of 300 (deficiencies begin to appear in the cerebral spinal fluid below 550), plus the fact you've been supplementing, I think I'd go for the IF and antibodies.....

  • Ok thank you! Will opt for that! X

  • So gp decided no more bloods lets just trial 2 wks loading doses!! 😉😛 xx

  • I really hope you see an improvement in your symptoms soon Kirsty. Shame about testing but at least it's a good sign prepared to listen and trial injections 🤗

  • Fingers crossed. I start loading doses a wk on monday. Did say he would do bloods after which I said would be pointless but said he just wants to see what it does to blood level but will go by how I feel. Also told me to up thyroid meds too. X

  • That's great !

  • Hi Kirsty,

    I just wonder if you are getting enough of the supporting supplements you need to make the extra B12 work? You are likely to need a broad spectrum multivitamin and mineral supplement, plus extra folate, potassium and magnesium, maybe iron. I suggest you Google these and see if any deficiencies may apply to you.

    It sounds to me that more potassium and magnesium may well help you and should reduce the B12d symptoms too.

    What sublinguals are you taking? A different sort or a mixture may have more effect.

  • Thank you for your reply. I take magnesium most days...forget the occasional day and started taking folic acid daily too. Folate result from 9th nov was 18.5. I had been taking swanson ultra sublingual methycobalamin 5mg pretty much daily.

  • That all sounds good! I recommend you consider your potassium levels - I need a lot (I use LoSalt in addition to things in my diet) to control the symptoms you describe.

    Hope you feel better soon!

  • Thank you! Can you advise how to get enough potassium? X

  • Hi!

    I suggest you try to increase it in your diet - bananas, coconut water, avocados, jacket potatoes and loads more things which you can find from Google - first. If you feel it's helping but you need more you could swap normal table salt for LoSalt, available from some independent stores and supermarkets.

    Hope this helps!

  • Great thank you 😊

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