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Pernicious Anaemia Society
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Update on the GP visit

Well the GP was more conciliatory today after I threatened to write letters if I didn't get answers. He said that after reading the consultants report which acknowledged borderline B12 dificiency also discussing with his colleagues he has decided that I have functional B12 deficiency but I don't have PA according to him. Therefore he will give me B12 shots every 8 weeks as a precautionary measure, so I had my first one today. I did argue the point that I should have loading doses because of my neuro symptoms but he says I don't need them as I don't have PA! And he will do another blood test in 2 months. I don't think this is going to improve things anytime soon and not sure where to go with this. If I SI before the 2 month blood test and the result is high GP may say I'm ok and stop them. Any advice on what I should do would be most grateful.

Many thanks as always for the support and advice I get on here.

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In my opinion your GP is talking rubbish.

Do get printouts of your blood results and post them on here. You will get more expert advice tomorrow I'm sure - everyone here seems to go to bed early except you and me.

This below seems to apply to you, perhaps some ammunition to take to your GP.

from the UK NEQAS B12 Alert

False normal B12 results and the risk of neurological damage (Please click for details)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

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Thanks beginner1, my previous posts show all the blood test results I've had done including the homocysteine, MMA & active B12 I had done at St Thomas' hospital in London. It has been a constant battle for the last 8 months and up until now has refused to treat me and he still doesn't get it.

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Hello Cali 25,

It is Independence day in the states and i have gone back thru all your posts, as we await the fireworks show.

I had to reply, as from your initial test results CLEARLY showing iron deficiency, having to get your son to go with you to the dr, to going to St.Thomas, to having to wait for gp to get b12 deficiency in black and white, all while you are suffering, makes me want to scream! What a frigging worthless gp you have.

You seriously need loading doses with dropping another 50 points recently.

Please conact the PA society to have them help you!!!

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Hello KimberinUS, thanks for your reply. It's so hard to convince Dr's over here, they just don't like it when you know more about the subject than they do. I am a member of PAS and will contact them for help.

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Also have you had your folate level checked Cali25?

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PA is one potential cause of a B12 deficiency - there are many others - and dietary deficiency is generally very rare.

The symptoms of PA are the symptoms of the B12 deficiency it causes.

The treatment for PA is the treatment for the B12 deficiency it causes.

Your GP is treating a B12 deficiency and (unless the cause definitely is dietary) the treatment is the same as far as loading doses are concerned. If the cause is h pylori infection or tapeworm then those need to be treated at the same time and treating them will reinstate the ability to absorb B12 from your diet meaning that you should then need maintenance shots for life.

How does your GP know that you don't have PA? - the normal tests for PA - IFA is prone to give false negatives 40-60% of the time so a negative result is a long way away from proving that you don't have PA. There is some evidence that gastrin levels may actually provide a better test for PA but this is still being investigated.

Suggest that you join the PAS and join them for support on how to tackle your GP

pernicious-anaemia-society....

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Also functional deficiency is a term that applies when your B12 levels are high not when they are low - if your results are borderline low they are low and functional deficiency (which is a reaction to high levels of B12 in serum - which would mean top/over range) has nothing to do with it

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Hi Gambit62, GP is totally incompetent he doesn't have a clue he was hoping the consultant was going to tell him what to do! Because my IFA test was negative he is convinced I don't have PA he read the part out in the BNF about loading dose when you have neuro symptoms which I said I needed, but you don't need them he said. I don't have a dietary problem and since the camera job I don't have anything else wrong except an absorption problem as the ferritin & Vit D have barely moved and he has now doubled the ferritin. I'm already a PA society member and I am going to call them for advice and wether they can intervene with the GP.

Many thanks for your support .

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good luck. hope that you get the support you need.

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Have you shared the BCSH guidelines?

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Yes I have, given him loads of info, doubt that he reads it.

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