Update on GP visit.: Hi Everyone, I... - Pernicious Anaemi...

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Update on GP visit.

Cn13 profile image
Cn13
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Hi Everyone,

I thought I would post with an update following my GP appointment yesterday. Thanks to everyone for their advice and support before my appointment especially Foggyme. I went armed with a lot of information. I went with the simple approach and said I have already been diagnosed with PA. He didn't find it on my records but to my surprise he agreed to B12 treatment straight away. He said I will be having 6 loading doses. He said then I would have injections every 3 months. When I pointed out I have neurological symptoms he said I could have them every 10 weeks. I know from my reading this isn't frequent enough.

My query is should I try to get more frequent injections or just wait and see how I feel.

Also could anyone point me in the direction of learning more about Vitamin D deficiency. I want to buy some tablets myself as not sure I have been given enough. Can somebody tell me good ones to buy please and should I also take magnesium.

I also mentioned about a haematology referral and GP said he didn't see how that would help except maybe to get an iron infusion. I will wait and see the results of my next blood test which is tomorrow.

Thanks everyone.

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Gambit62 profile image
Gambit62Administrator

Vitamin D can affect calcium in high quantities so would advise getting some medical advice - you could try speaking to a pharmacist if you aren't getting any joy from your GP

This paper is a summary of recommendations for upper daily intake produced by the European Food Standards Agency for a number of vitamins and minerals and goes into the factors that were taken into account when drawing up the recommendations

efsa.europa.eu/sites/defaul...

Keep a diary of symptoms and how they respond and when they come back. No guarantee that even if you got eight weeks that that would be enough.

Foggyme profile image
FoggymeAdministrator

Hi carmel13n. I agree with gambit. Even every eight weeks will not be enough initially because of your neurological symptoms - and this is the maintenance regime that comes after the loading doses and every other day until no further improvement element of the treatment.

Suggest you go back again and aim to get the correct neurological regime of treatment.

You can use the evidence from the documents below to support your request for the appropriate treatment...and incidentally, the correct treatment as per all the guidelines. (I know I've given you the links before but just thought I' save you having to trawl through reams of 'stuff' - interesting through it is 😄).

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

If your GP is still reluctant to treat you properly, here's something else that may help.

Log on to the Pernicious Anaemia Society website, go the the library section and print off the document called subacute degeneration of the spinal cord. This document outlines the sort of neurological damage that can occur of B12 deficency is under treated in the early stages (if,you're. It a member, you won't be able to access it - but you can find information about it,on the Internet). I'm certainly not suggesting that you have or will develop this. GP's are mostly unaware of the neurological havoc that B12 deficiency can wreak on the body and seeing (and reading) this document may sharpen your GP's thinking a tadge. It should 😄.

If he's still reluctant to prescribe the correct treatment, ask him to reassure you that you are not at risk of developing this because of under treatment (i.e. Treatment not,in line with the guidelines) and ask him to put that in writing and provide medical evidence to support that decision (he won't be able to - there isn't any - quite the opposite).

And lastly...well done...really pleased that the 'simple' approach worked for you....💉💉💉

Let us know how the next B12 mission goes, take care, and post again if you have any more question or need any further help.

Hurrah for B12 😄

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