New member with a few questions

Hi, I've just joined the PAS and am not sure about a few things. Briefly, I was told I was b12 deficient about 10 months ago. The GP hasn't ever explained or discussed it with me and I have no idea whether it is PA or not. The first time I was due my 3monthly shot I felt really rough and asked if I could get it earlier, the doctor (via nurse) said yes seeing as my initial levels were so low. Since then I've had to wait the 3 months. When I questioned it again due to symptoms (mostly depression and brain fog) my levels were tested, but when they came back 'fine' I was told to wait. Also, the doctor I saw on that occasion told me depression wasn't related to b12 deficiency. Since then I've turned to patches and recently sublingual tablets, which make a bit of a difference until close to the due date. My questions are: should I ask for a diagnosis, and how? What documents are available to take into the GP? How do I get access to the advice from a nurse on the site? Does anyone else on here have PCOS as well as PA/b12d? 

Thanks in advance for helping me out! 

17 Replies

  • Your first question "should I ask for a diagnosis, and how?" is tricky because while, in theory, the antibodies involved should not be affected by treatment, in reality the tests for the antibodies are so unreliable that it might be a waste of time. If you have classic PA, you would test positive for intrinsic factor antibodies. However, up to half of patients with PA never test positive for IF antibodies, or test positive on one occasion but negative on another occasion. Plus there are other possible reasons besides classic PA for malabsorption of B12.

    I can give a conditional yes to your last question "Does anyone else on here have PCOS as well as PA/b12d?" It's a conditional yes because I was once told that I had an 'atypical' case of PCOS prior to learning of my low B12 levels. The strangest part is that, after 8 or 9 months of getting monthly cyanocobalamin injections, my PCOS seems to have gone away. I've been on injections for years now and not had any more PCOS-type problems. It turns out that B12 deficiency can affect fertility in both men and women. I suspect that I never actually had PCOS, but was just misdiagnosed.

  • Thanks Galixie. I wondered about the diagnosis because it feels odd not knowing what it actually is and why it's happened to me. I'm not vegan but I did spend many years on diclofenac and omeprazole, or it could be gluten because that really upsets my stomach. The doctors didn't tell me they were testing for gluten intolerance and I'd stopped eating it - so that was a waste of time. It's really interesting to hear about your PCOS misdiagnosis - did you have weight and hair problems? Mine was confirmed with an internal scan years ago, but my periods are now regular. I'd be over the moon if my PCOS disappeared! Losing the weight and hair would be a dream come true. 

  • Mine was atypical because I had small peripheral cysts on both ovaries which showed lack of ovulation, however all the hormone tests came back normal. I was told by the technician who did the ultrasound that PCOS cannot be diagnosed by ultrasound alone. There have to be hormonal imbalances also for it to truly be PCOS (and they have to rule out the causes for any hormonal balances they find). You might want to look back at what bloodwork was done at the time and find out if hormonal imbalances were detected.

    I remember when I was being tested for PCOS that they took 7 vials of blood. There were a lot of tests run. Ironically in my case, B12 wasn't one of the tests, so my true problem wasn't discovered for several more months.

  • I am so glad you have responded, I remember that my hormone tests were normal but they found cysts on investigation. They never said 'atypical' so this is all news to me. Thank you, I have a new avenue to explore and potentially things might change as I continue with the injections. 

  • There is a lot of literature linking B12 deficiency with depression/other mental health issues. BCSH guidelines also state that blood monitoring should not be done to monitor treatment- base on symptoms. I'd recommend keeping a symptom diary in relation to injections and go back to GP. If there are neurological symptoms guidelines say 2 monthly maintenance. Also how many loading doses did you get?

  • Thanks for your response, so if one of my main symptoms is depression I should get the injection every 2 months? I can't remember my loading dose, think it was 4-6 but I've got my 3 monthly tomorrow so will ask the nurse. What should it have been? 

  • For neuron symptoms BNF and BCSH guidelines state alternate days until no further improvement- it seems people rarely get this. I did as I fought my own corner and it had a miraculous effect. That won't be the case for everyone but I think it is worth a shot (no pun intended)

  • Thanks. Do you know where I can get these guidelines to take to my GP? 

  • Cheers 

  • Assuming the deficiency wasn't dietary - 

    Personally think you could go mad trying to really get to the bottom of why you have a B12 absorption problem - there are at least 5 possible causes and nothing to say that there isn't actually more than one thing going on.  Whatever the cause the treatment is the same.

    Yes, frustrating that Gps are so unaware of the full range of B12 symptoms and never think to join the dots of there are a number of potential indicators - such as the stomach problems, depression and PCOS.

    They probably haven't discussed it because they think it is a blood disorder - macrocytosis and as you probably don't have any signs of macrocytosis (its a symptom and frequently not one of the earlier symptoms) they think they have caught it early.

    May be suggesting that your GP looks at this site might help to educate them


  • Thank you for your response I appreciate your help. I must admit to being a bit nervous giving my doctor something to read - they're often so arrogant in my experience! I will try it though. 

  • know what you mean.  Think sometimes it is best done by letter - others have had some success with passing on copies of one of Martybn Hooper's bookd - or Could it Be B12? by Sally Pacholok.  There is also The B12 Deficiency Survival Handbook - written by a GP

  • Hi Andanj 

    This is so sad - history repeating itself time and time again in doctor's surgeries all across the UK.

    You may well not be suffering from "depression" although feeling as bad as you do between injections is often enough to make you feel depressed.

    I was misdiagnosed with depression back in 1968 (on the strength of an inconclusive Schillings test) and put on three powerful drugs, Valium, Tofranil and Librium plus antispasmodic Neutradonna tablets when all the while I had P.A.

    I do hope you can get your doctor to treat you as you need and wish you well for the future.

    clivealive If you would like to read my P.A. Story click on my name

  • Hi Clive

     Thank you for your reply, I've just read your story - you've had to deal with so much! The more I read into PA the more scared I get. I wonder if anyone gets better treatment going private? I would love it if a doctor would be willing to take the time and listen to me, not fob me off. I'm really interested in how your PA connects to your diabetes as my mum had the same along with many other things and she died aged just 61. I'm going to post a separate one to ask if anyone has similar experience to what my mum had. 

  • Hi again Andanj 

    Please don't be scared about either b12d or P.A. as both are easily and mostly controllable as long as we get the right treatment - even if it means self supplementing as you already do.

    Our real battle is with our doctors and every time "one of us" succeeds in getting them to understand and treat according to the symptoms instead of just reading the test results, we make it better for his next patient and so ad infinitum.

    I am not a medically qualified person and can only comment on my own experience as far as P.A. and Diabetes is concerned. I do know that Metformin taken for Diabetes affects absorption of b12 as do proton pump inhibitors and antacids, but I'm not sure whether, as I'm on B12 injections, those side effects apply to me. Fortunately my diabetes is under control with the Metformin, diet and exercise.

    If yours is an absorption problem (as opposed to P.A.) you might benefit from a diet high in red meat, fish, poultry and eggs (I understand caviare is exceptionally high in b12) PLUS plenty of folate B9

  • Maybe U was misdiagnosed. Once the doctor prescribed me wrong medication. Day after day I was feeling myself worse and worse. I stopped taking them and went to that doctor. He said that I took wrong dose (but he prescribed me that dose). I read a lot about medical negligence on and we should fight against such doctors. PS I sued him

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