After 25 years they have stopped my B12 - what can I do?

[DIYenthusiast]

I'm in my early sixties. Generally very good health. On no medication.

About twenty five years ago my then brilliant GP did a blood test for B12. A few days later rang me to come to the surgery immediately where he injected B12 himself. Apparently I had dangerously low levels of B12 that indicated I was unable to metabolise it. He told me I was in danger of pernicious anaemia, that I would have to take quarterly injections of B12 for the rest of my life. After a few shots my mystery symptoms (mouth ulcers, constant sinusitis, sight problems, pains in my legs, mood swings) had all cleared up. I took B12 injections every three months for almost quarter of a century. Then came covid. I missed about a year of shots because I was shielding a vulnerable family member. The symptoms came back. My current GP she said she needed to test my blood again, telling me it was unsafe to give me any B12 in case I needed more than they had been giving me. I smelt a rat and argued that I should not be tested again after a diagnosis. She woudl not budge. I had no choice. Sure enough she said my levels were fine and I would no longer get B12 on the NHS. This also meant that I didn't have a current B12 diagnosis to go elsewhere.

After another year my symptoms of 25 years ago were back with a vengeance. I contacted another doctor at the surgery and appealed the decision. He did two blood tests three months apart and saw that my B12 was falling on a straight downward trend. Unfortunately, I was still between 200 and 300. He would not agree to injections but gave me a huge daily dose of B12 by tablet. After taking them for 3 months my B12 was at 600 - this surprised me as I thought I couldn't metabolise it. But I was happy as he said he would give it to me as I needed it. 6 months later and I am experiencing symptoms but a blood test shows a level of 300, so no more B12 for me according to the GP. I suppose this means that until it falls under 300, or worse, 200, I am on my own.

I do not want to continue with this "wait until the symptoms are really bothering me" or until I develop pernicious anaemia. It seems that B12 is harmless at worst, but doctors seem dead set on getting people off it. I heard from a health worker that the surgery had taken everyone in the region off B12 using COVID as an excuse.

The doctor who originally put me on B12 and warned me about PA was a very experienced family doctor whose warnings ring in my ears. Unfortunately he has passed away.

Although my B12 levels do not look alarming, they fall steadily between blood tests and right now I am experiencing sight problems that the optician says are neurological in nature. It may not be connected to the B12 but I would like to err on the side of caution since B12 is a no-risk treatment, while I await to see a neurologist - this is proving difficult under the NHS and could take up to two years to get an initial consultation.

Is anyone else seeing this drive to get people off B12 or is this a local phenomenon?

Any advice on dealing with the surgery when my B12 is not dangerously low but is heading downwards and producing symptoms?

Any advice on sourcing B12 myself, and the advisability of this, if I can't convince my GP – although I continue to try. He’s a nice man but I fear he himself is being put under pressure.

Sorry for the long post – but I found this group and thought that the posts looked very helpful indicating a good group of people familiar with PA and B12 issues.

[Nackapan]

You don't get PA if you stop B12 .You either have it or you don't. If your diet includes alot of b12 and you are not a vegan you definitely have an absorbtion problem..

This really annoys me that poultry regime of 3 monthly has kept you well as caught early by a good G.p.and treated immediately wouid be stopped .....Why oh why when keeping you well. ????

G.P not trained in this and relying gon blood tests only and nog clinical history or symptoms.

Infact the blood tests have proved you dont retain enough B12.

And that is ignored. ??

I wouid consider self injection until sorted.

Write s short letter to gp practice asking for b12 injections to be reinstated .

It will be scanned on your notes .

I had to see 6 gps until my b12 prescription was 'safe '

PAS has information for professionals offer this in your letter.

[DIYenthusiast in reply to Nackapan]

Thanks for your reply. Some very helpful observations and advice. Of course you are right about the PA being a binary state. I really wish they had left me alone with my B12. I know how much better I felt when they were giving it to me. Hard to get B12 over the counter without GP note. However I'm going to France next month and I will see if I can get some. Will also keep at GP - writing a letter is a good way to get it on record.

[Nackapan in reply to DIYenthusiast]

I apologise about typos.Felt indignant on your behalf and didn't help typing .

I'm left with a fes things due to late treatment.

One being text disappears from the right as I type.

Odd .

Had all the tests.

So I assume brain messaging to eyes nerve damage ??

[PlatypusProfit8077]

Sometimes I feel the name Permicious Anaemia does the condition (and us) a disservice. Because doctors seem to think that as long as you fix blood levels and there’s no active anaemia, the patient is fine.

I hope you can get your injections reinstated. My eyes were affected by the B12 deficiency and have corrected themselves with frequent injections

I consider myself quite lucky to be in Australia where I can buy over the counter. I hope this doesn’t change!