Advice welcome

[natcap1]

I have just been diagnosed with autoimmune gastritis. I have had gastrointestinal problems for years, since the age of 18, and I am now 44. Just before the gastritis diagnoses I asked my GP for a B12 test as I had heard that it could be connected to stomach issues, and I had just found out my dad has pernicious anaemia, and has had for some years. Unsurprisingly it came back low (174ng/L). After the gastritis diagnosis I asked my GP for further tests to find out whether I had PA. My parietal cell was positive, the intrinsic factor was negative. My folate levels were fine, haemoglobin levels, platelets, red blood cell counts and volume were fine. I had been taking B12 supplements in between this time and when the serum vitamin test was repeated it came back as 226 ng/L. My GP considers this means I don't have PA.

However, since then I have seen a gastro consultant about the gastritis, he said for pragmatic reasons I should be considered as having PA, as there is no conclusive test, I do have positive parietal cell and low B12, and my father has it. What I would like to know is are the vitamin supplements going to work. My GP considers that they are because the serum test for B12 went up after a month of taking them. However, I am really worried because I have tingling / pins and needles all over. I have had tingling in arms/legs/face on and off since I was 18. It just seems to come and go. No doctor has ever been able to explain this, so I have always just put it down to anxiety (I have panic disorder). Can anyone tell me:

If the tingling on and off could be associated with long term low B12, or whether the tingling would not have stopped if it was a long term deficiency (the tingling has been much worse this time round and has been more like pins and needles, my GP thinks it would only be in the hands and feet if low B12)?

Should I be convincing my GP to give me B12 injections to at least in the first instance bump up my B12 levels? Another GP at the practice seems to think this might be dangerous. After reading the PAS website, this doesn't seem to be correct.

If the Vit B12 tablets are working could they cause the tingling as my levels go up?

Any help here would be much appreciated.

Thanks.

[fbirder]

Print this out and show it to your GP. It’s the standard procedure for East Yorkshire NHS for people like you...

hey.nhs.uk/wp/wp-content/up...

You need injections for life.

[natcap1 in reply to fbirder]

Hello and thanks for sending this through. I have had a read though and following this procedure (which I'm pretty sure is what the doctor did), I end up on B12 vitamin supplements and not IM injections. Also as part of it B12 needs to be re-tested. When mine was re-tested after 4 weeks of being on B12 vitamin supplements (using the only option B12 serum test) my levels went up. The end point is that I remain on the vitamin tablets, but still have some symptoms. If the serum test is unreliable (as it is according to PAS), then how can this procedure be followed and result in the correct treatment? I am clearly a borderline case, because I have only a few symptoms that could possibly be explained by other things (but never have been explained), I have low B12 levels but on the borders of the bottom of the normal range, and I have a negative intrinsic factor result.

I'm going to go to the GP on Monday, I will show her the PAS information, she will probably go ahead and follow the process you have sent me again, and I will told to continue to take the supplements. I am finding this really very frustrating, and am concerned that this will cause neurological damage if this goes on for much longer. If I was on the floor with fatigue it would be much easier for me to convince the GP that I need the IM injections (also myself for that matter). Tingling in the legs, arms and face without numbness seems to be something that doesn't cause them much concern.

[fbirder in reply to natcap1]

If you follow the flow chart in fig 1.

Your level of 174 ng/mL equates to 128 pmol/L which would place you in the right hand path (between 112 and 150 pmol/L). That means you need to be started on B12 replacement. If you check the figure heading it says that the treatment should be intramuscular injection.

After the treatment starts they should check for Intrinsic Factor antibodies. If you’re positive for this or your symptoms improve then you are on injections for life - with no further testing.

Your gastroenterologist is correct. You have atrophic gastritis, you have low B12, and you have positive results for Gastric Parietal Cell antibodies and you have symptoms of a B12 deficiency. That was good enough to persuade my haematologist that I had PA. Its good enough for your gastroenterologist to say you have PA. It should be good enough for your GP.

[natcap1 in reply to fbirder]

Hi there, thanks for the clarification, I neglected to read the first few lines of the flow chart properly. I may also be predicting a battle, as so far I have arrived where I am purely through determination to demonstrate there is something wrong! Since I have been taking the B12 tablets my level went up to 226 ng/L or 167 pmol/L. This takes me just over the 150 upper limit in that right hand flow chart box. Am I correct to think that regardless of this I require the intramuscular injection because the tests are unreliable and this could just be available B12 that I can't absorb? I just need to cover my bases in case the GP tries to argue the supplements are working. Many thanks again for your advice.

[wedgewood]

Sounds like you have P.A. Tablets will not help -but you will get a high reading of B12 blood serum from taking them , but it will not get through to your cells .You need injections for life. Your gut problems are linked to this . PA patients have low/no stomach acid Hypochlorhydria/ Achlorhydria . This upsets your stomach flora., resulting in pain , bloating , nausea etc.

Probiotics helped me with this ( Symprove ). Be warned , the medical profession has little knowledge or understanding of the condition . It will probably be an uphill job to get the correct treatment . That is why the PAS was formed . You will get help here . Many of us have to treat ourselves by self injection . Sorry I have to dash now . But dont despair . All the best .

[natcap1 in reply to wedgewood]

Thanks very much for the responses, this is helpful. By the way I should have said autoimmune atrophic gastritis in my original post. It is a shame that getting an understanding, diagnosis and treatment for PA has to be such a battle, right at a time when energy is low! I am meant to be going on holiday in just over a week and am concerned that even if I can persuade my GP to give me shots, that it won't be until after I get back. Now I am pretty sure these symptoms I have had for years are from the low B12 I am worried about neurological damage. I suppose waiting 3 more weeks for treatment isn't much after years of putting up with this!