Florag

Hi Everyone,

I was diagnosed with PA 5 years ago (For anyone interested my story is online in the old Pernicious Anaemia Society site.) I haven't worked out yet how it all functions since it became Health Unblocked.

After I developed PA I couldn't find a doctor who would believe me despite the fact that I have a strong family history of the disease and my tests all pointed to the diagnosis of PA. Eventually I saw a gastroenterologist who confirmed the diagnosis but by this time I was so stressed by the doctors who refused to believe me and didn't understand anything about the disease that I developed Generalised Anxiety Disorder and ended up under the care of a psychiatrist who tried every drug available but I couldn't tolerate any of them as they all caused horrible side effects. Eventually the psychiatrist told me she couldn't do any more for me and I should see a psychologist whom I have been seeing for 9 months and I am slowly improving.

When I developed PA I also developed chronic pain in my thighs and despite every possible test the doctors can't work out what is causing the pain. The psychiatrists believe that it is caused by my anxiety but I'm not convinced. My own GP (I have a GP now who has a strong belief in the efficacy of B vitamins) gives injections containing all the B vitamins and that seems to be helping.

My question is: Has anyone else suffered similar experience in conjunction with PA and if so, how often do you find you need an injection?

In many ways my experience resembles Andrea M's, though less severe, but I also had a spinal injection when they were very new here in Australia and my memory is that that was the reason for Andrea's physical problems.

Best wishes,

Gabrielle

9 Replies

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  • GAD is actually a label for a cluster of symptoms which arise from a wide range of causes - one of which is B12 deficiency. Sorry that the psychaiatrists etc who treated you wern't aware of this - though unfortunately that isn't uncommon. It probably explains why pills didn't have any effect - that and the possibility that if they were giving you SSRIs then they could have been depleted your folate levels, leaving you in a position where your ability to process and use B12 is restricted even further.

    I had four+ decades of depression and anxiety which got worse before the B12 deficiency was identified and both actually got worse after I started treatment, but both did clear when I started treating myself - took a few months and was something that I really wasn't expecting at the time. I use a nasal spray rather than injections - easier to do where-ever and whenever I feel I need something.

    On the pain - I also had a lot of problems with pain in feet, legs and back ... which have resolved with treating myself.

    Exactly how B12 and pain are related is unclear and it is probably a number of factors - partly damage to the lining around nerve cells and partly the neurospychiatric effects of B12 - meaning that signals aren't getting through and aren't being interpreted properly. Whatever, the cause my experience was certainly that B12 changes my perception of pain. Occasionally I stand up and experience pain in my ankles - difficult to appreciate unless you have experienced it but taking some B12 sorts out the problem.

    I seem to need a lot of B12 - my theory is that I suffer from an auto-immune response that means that when B12 serum levels are high I create antibodies to try and shut down the mechanism (TCII) that transfers the B12 to the cell level - so lots of B12 in my blood but none that my cells can use ... and this was why I was getting worse even though I was receiving injections. However, if I have really, really high levels then my body can't produce antibodies to all the TCII and enough gets through.

    There isn't much info out there on treating absorption problems if there is an autoimmune response but this seems to fit with my experience

    ndcn.ox.ac.uk/publications/...

    If I was injecting then I'd be injecting more than once a day.

    I also find that different forms of B12 help with different symptoms - hydroxo is best for the depression and anxiety - but for the numbness and pain methyl and adenosyl work better. Adenosyl seems to have the biggest effect on my feet and the range of movement and feeling.

  • Thank you, Gambit 62.

    I see my GP tomorrow and will ask for my folate levels to be checked. Your theory about the autoimmune response is interesting, as is your self treatment. My doctor has been giving me injections twice a week for a block of two weeks with mixed success.His injections contain all the B vitamins and I'm not sure that the B component is hydroxocobalamin but I will check. My husband gives me a hydroxocobalamin injection about once a month but he has been feeling that I need more regular injections. Strangely enough we had decided on a weekly regime to see if that has any effect.

    My husband is a retired pharmacist but has not heard of Adenosyl so it is possibly not available in Australia or may have become available since he retired. We will enquire.

    Best wishes

    Gabrielle

  • Adenosyl goes by other names as well - so possible that it is generally known as something else in Australia - probably worth googling to find out what the other names are as I can't remember them off the top of my head ...

  • "After I developed PA I couldn't find a doctor who would believe me"

    I could certainly relate to your comment above. Although I do not have a PA diagnosis, I have many of the symptoms. I brought up the subject of b12 deficiency with every medic I saw....no-one took me seriously and after years of slow deterioration I decided to treat myself.

    I became very anxious because I was scared that my body and brain weren't working properly and every medic kept telling me it was just depression. I found the not being believed traumatic and in some ways worse than the physical symptoms I had.

    I believe Andrea eventually found another cause for her B12 deficiency. I think she is active on a Facebook group for B12 deficiency. Contact details here b12deficiency.info/life-sav...

  • Sleepybunny, Could you please explain to me how to join the (private) Facebook group? Thanks, Beth

  • Hi beth,

    Sorry I don't know as i'm not on Facebook.

  • It's OK as I eventually worked it out. Thanks for getting back to me.

  • Thank you, Sleepy Bunny.

    I hope things are improving for you now.It is frustrating to have all the symptoms and not to be believed. I have a genetic history of the disease but even that didn't convince them.

    Best wishes,

    Gabrielle

  • Hi Florag,

    It's good to have some encouragement so thank you. I have recently talked to a GP who is not my NHS GP and he thinks it's possible I have Antibody Negative PA (as mentioned in the BCSH Cobalamin Guidelines) but it still leaves me with the problem of getting a confirmed diagnosis. My b12 levels are very high due to supplementing and I don't think there is any NHS medic in my area who will diagnose purely on symptoms. IFA tests are negative. I seem to need a huge amount of B12 to have an effect.

    I wonder about whether I have an MTHFR mutation.

    Best wishes to you as well. I hope you find a treatment regime that works for you. Its good that your husband is supportive. I have heard of people who are fine on the standard NHS treatment and I have heard of some people who take the equivalent of several doses every day.

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