I've had symptoms potentially related to a b12 problem just about all my life (I'm 50 now). I became very ill about 3 years ago with a typical list of symptoms along with extreme weight loss and loss of muscle mass. I was anaemic then and also had very low serum ferritin. I saw a neurologist who told me that he thought I had motor neurone disease, then MS, then I was given an ME/CFS diagnosis and left to my own devices. I think my b12 was tested around this time and I presume that it must have been within the normal range.
About 6 weeks ago I was too weak to swallow and started to have sensory disturbances, along with burning skin, constant palpitations etc. housebound.
Looking at my situation myself decided that my problem looked a lot more like a b12 problem than ME/CFS. I would have been prepared to chase the diagnosis privately, but I honestly don't think that I had the time to wait: my father was undiagnosed, had many of the same symptoms and just faded away and died.
I started self injecting the cyanide stabilised form about 5 weeks ago, every other day. I'm a long way from being well, but my improvement is immense, some problems I've had all my life have gone and I can walk for an hour with no problems whereas before, I was scarcely able to move around my house.
I would like to get a diagnosis. My injections will mess up any b12 testing but I presume that the intrinsic factor antibody test would still potentially deliver a result, is this so?
I have seen so many doctors over the last 30 years, including many privately at great expense. I don't understand how this hasn't been hit on before, my life has been a massive struggle and extremely limited.
My ME/CFS diagnosis (if you can call it that) will certainly have to be removed as already I don't meet the criteria.
I've written to my GP describing what I'm doing and my situation but I've had no response. Can anyone suggest a pathway towards a re diagnosis?
Best regards
Simon
Written by
Uluru72
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I’m sorry to hear you have been suffering for so long. I am happy to hear that you are self injecting so that you can start to heal.
You can get a parietal cell antibody test and intrinsic factor testing. Both are blood tests. You will need to come off B12 for 2 weeks for intrinsic factor testing. Keep in mind, only 40-60% of people test positive to intrinsic factor antibodies even if they have pernicious anemia. You don’t have to come off B12 for parietal cell testing.
Now that you’re injecting, your B12 will be high so no need to test that anymore. There are some other tests you can do like MMA and homocysteine but the 2 tests above are the ones that give a definitive diagnosis (at least in Canada where I am).
I'm just doing that but no approval yet from NHS. Does anyone know about NHS notes storage?
I was diagnosed with PA around 1985 and received regular injections until 2020. My then GP Told me I didn't need them then ignored me totally. So now I changed my GP again, but he tells me there's no mention of my diagnosis in my notes.
Am I being bad-minded in thinking this could be deliberate, or could it be clerical error? I always thought that the old-fashioned hand-written cards still had to be maintained.
Additionally. I have malabsorption, pancreatic insufficiency, and now reflux with hiatus hernia requiring PPIs. Every one of these needs B12 injections.
Hi Uluru, I'm so sorry you've had to go through all this 😔 For a start, your GP really should reply to your letter and hopefully suggest a consultation.
Chase them up and at the same time, as Newlandvale suggests, request to see your medical records.
The good news is that it is now free to access your records, - see the NHS website .
If you're having positive results from injections it sounds like you're correct in your assumption of B12 deficiency.
Your doctor should pay attention to the red flag of your father's illness.
It's difficult when you're ill, but starting with your GP, keep pushing for an NHS referral and some answers !
I'm glad your health is beginning to improve with the injections, there is light at the end of the tunnel !
Thanks for the helpful responses. Any mention of what happened to my father has been ignored as he was never diagnosed but his suite of symptoms was perfect for B12 and his wasting away and death was enough of a mystery for an autopsy to be done. He was presumed to have bowel cancer, but no sign of that was found.
Have also read that a pepsinogen test may be useful.
Some laboratories say to leave at least 48 hours after a b12 injection before testing Intrinsic Factor Antibodies (IFA or IFAb) and some say up to two weeks.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. If you can't find local guidelines online or by searching forum posts here then best bet is to submit a FOI request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Read this UK blog post if you want to know why I suggest this.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left other detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
With your immense improvement, do you really feel like you need an official diagnosis? One problem is that the tests are not very accurate. I never got an official diagnosis, but I went from sleeping 16 hours per day with a whole host of other symptoms in just a few days by taking B12. Eventually, I had nerve issues in my feet and switched from supplements to injections. Why not just assume you have pernicious anemia and continue life long supplements? I don't think it would help very much if you did not have a problem.
I agree with you that the specifics of my diagnosis are secondary to my improved health. However my current ME/CFS diagnosis has practical implications; I can't take out certain types of insurance, my mortgage is more expensive. From a clinical point of view PA would predispose me to an increased probability of some other conditions, things which I'm sure my wonderful GP would be monitoring. Essentially, I would rather be correctly diagnosed, officially, than not. I'm also on amitriptyline for peripheral neuropathy, I don't need that anymore, my overall situation needs to be reconsidered.
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