How long for symptoms to return?

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I suffered from b12 deficiency a couple years ago and was given injections 5 or 6 injections and was sent on my way as my levels were now "high enough". Fast forward 2 years and I've started feeling horribly tired again. I slept 9 hours last night and I don't feel like I moved or woke once. (Fitbit tells me I had a restful sleep) but my eyes feel super heavy, and I am very sensitive to the light and just feel tired.

I'm also having problems with my tonsils at the moment and are waiting to get these out, So I am on antibiotics frequently. Anyway, my question is has anyone else who's was only given a certain amount of injections levels dropped again? And how long did it take to get low again?

Thanks!

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  • Posted

    First of all, are you in the U.K. and if so are you vegetarian or vegan? 

    It sounds as though you've been given the initial loading doses but without any further follow up tests or treatment. How long after your six injections were your levels re-tested?

    Usually we would expect you to have injections every three months from the finish of the loading doses. This is to keep your levels topped up. After two years I'm sure your B12 will have dropped considerably.

    Were any investigations done as to the cause of your low B12? Vegetarians and vegans are often low as they don't eat enough meat, fish, and diary produce. Other reasons for B12 to be low are often linked to digestive problems, coeliac disease, Crohns, or stomach surgery, low stomach acid etc...

    It can be an autoimmune issue, where the body attacks the part of the digestive process that is needed to absorb B12 from our food.

    It is likely that your immune system is under pressure due to the low B12, and your tonsillitis could be at least partially due to this.

    I would suggest you see your GP again, for a repeat B12 blood test, also ask for your ferritin, folate and VitD to be tested. These are all needed for the B12 to be used, and if they are low, you may not be able to use the B12 you do have.

    Best wishes 

    Marion 

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    • Posted

      Thanks Marion. No im in nz. I had the 3 loading doses then once a month for another 3 months. I'm not vegetarian or vegan but I don't eat a lot of meat. Yes they did all the tests back when I was low, and they all came back negative. I got tested about 6 months and and then a year later. Is low b12 something you can recover from? Or will it always be an issue? Thanks again

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    • Posted

      Hi Jaimee, even though your test results were negative, it doesn't prove you don't have Pernicious Anaemia. Apparently the test is notoriously unreliable, and many people can have several negative results before getting a positive one. My own result was "vaguely positive " according to my GP, and I was told I would need injections for life. 

      Low B12 can occur alongside other autoimmune conditions, in my case I have thyroid problems and fibromyalgia too. Do you have anything else that might have acted as a 'trigger' for the condition? Asthma, eczema, stomach issues etc....?

      There are several books available now about low B12 and it's causes and symptoms. In the .U.K. we have the Pernicious Anaemia Society. 

      As you say you don't eat a lot of meat, it could be worth trying to supplement your B12. Did your doctor suggest this to you?

      Definitely get another blood test first, so you know what your level is now. I hope you won't need injections for life, but if you do, it certainly makes a huge difference. Mine have helped me enormously, I'd begun to think my brain was deteriorating, due to the "foggy" thought processes that very low B12 brings.

      You can have a look at the Pernicious Anaemia Society website for a full symptom list. This might be helpful to you. PA is only one reason for low B12, the books explain all the other causes and reasons for it to be low. 

      Hope you get it sorted and begin to feel better soon? 

      Very best wishes

      Marion 

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    • Posted

      I have started to developed develop eczema but didn't know this was linked? I also have been getting stomach pains every now and again but was told to take gastosoothe. I have a docs appointment booked next week. Last time I got my levels checked they were 276 and this was normal. So will be interested to see if anything changed in a year. Thanks for your help, I will keep you updated! smile

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    • Posted

      Please do let me know how you get on? Any advice I can offer,  as someone who has been on injections for over two years, I am happy to give.

      Low B12 is an area that many GP's know little about.😁

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    • Posted

      That is just plain stupidity.  162 is definitely "bumping along the bottom" of the range.

      You say you've had loading doses and then three monthly injections.  How long ago was your last injection?

      Are you still having neurological symptoms? 

      Did you ask to have your Folate level tested?

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    • Posted

      Folate and iron were normal. My last injection was in 2015 as they would give me any more because my levels were fine.

      I'm in a constant state of tiredness, had lowish blood pressure this morning when it was tested, and a few other symptoms too. Do you have any idea how quickly levels drop? Say if I went back in 2 months for another test if symptoms were still present could they be low enough by then for treatment?

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    • Posted

      A lot will depend on your diet (you need to eat plenty of meat, fish, seafood, eggs, poultry & dairy produce) and whether you have an absorption problem with your stomach e.g. low acid level. Stress & worry will also "use up" B12 as will excessive exercise.  Medications such as antacids, antidepressants, proton pump inhibitors, antibiotics and certain contraceptive pills can also affect B12 levels.  Other autoimmune diseases such as thyroid problems can also put you at risk as too will gastric surgery or even dental treatment where nitrous oxide is used.

      The list goes on but if none of these apply to you, you could always ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

      Finally there is the posibility of Pernicious Anaemia.  I think you said you have had "all the tests" which came back negative.  Sadly the test for P.A. is not terribly reliable.

      B12 deficiencies are of a personal interest to me because I have Pernicious Anaemia which destroys cells in my digestive tract (the parietal cells) which are responsible for absorbing Vitamin B12. I suffered awful symptoms for 13 before I was eventually diagnosed with P.A. after two Schilling tests – one in 1968 and the other in 1972.

      I wish you well

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    • Posted

      Thank you, it is interesting learning about this! I am constantly on antibiotics (at least one course per month) as I'm waiting to get my tonsils out in a few months. I will keep a close eye on my symptoms over the next few months and see what I am when I'm retested. Thanks for you advice!

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    • Posted

      As Clive has said that does seem very low, and if you are having symptoms you really should be getting treatment. I know you are in NZ and probably the treatment options are very different from here, but I am concerned that you are being left to struggle on an insufficient level.

      Clive has suggested getting your Methylmalonic acid levels checked, do you think your doctor would do this? The other test that might be helpful is for homocysteine, which can also be high if B12 is low.

      To ask for further testing in two months is a good idea, and if you are continuing to drop I hope they will begin to treat you again. 

      Have you had a look at the Pernicious Anaemia Society website to see a full symptom list, you may find there are other things you could put down to the low B12. 

      The guidelines here are very clear, if the patient is having symptoms, then treatment should be given. This applies even if the blood serum level isn't below range. Very best wishes Marion 

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  • Posted

    Marion has given you a lot of good advice

    As to causes, anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Women with a history of infertility or multiple miscarriages.

    Do you see yourself as any of the above "people"?

    It is important to have not only your B12 but also your Folate checked as the two help your iron to make red blood cells.

    I'm not a medically trained person but I have had P.A. (a form of B12 deficiency) for over 45 years.

    I wish you well

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