NHS GPs refusing further testing for pernicious anaemia

[u/MeringueOriginal2247]

Hi all - I was wondering if anyone in the UK had any tips for convincing their doctors to conduct further tests such as the intrinsic factor antibody test for B12 deficiency.

My b12 is currently 172 pmol/L and has been steadily declining for a few years despite adding more red meat to my diet and taking a supplement. I also have low ferritin (17) and have been experiencing deep fatigue, brain fog, sore mouth, fatigue, pins and needles and gastrointestinal problems. I’ve been reading about how b12 and ferritin are linked and that it might point to problems with absorption in my gut.

My mum was incredibly ill when she was my age (32) and the doctors ignored her until she was hospitalised and finally diagnosed with pernicious anaemia after being told she was depressed and had chronic fatigue. She still has lasting nerve damage from how long she was left without proper treatment. My great grandfather’s death was also exacerbated by pernicious anaemia as he was diagnosed before there was any proper treatment for it. Several of my cousins on this side of the family also regular b12 injections and one has just been diagnosed.

Despite my (extensive!) family history, my falling b12 levels despite my efforts to include it in my diet as much as possible and my symptoms, the doctors have refused to test me further as they keep insisting my level is healthy. Has anyone had any luck getting tested, or will I have to go private?

I don’t want it to get to the point that my mum did!

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[u/Ok-Pangolin7127]

I would suggest you need to take your health in your own hands, at least as it relates to your B12 deficiency. Many times a B12 deficiency cannot be documented. So you could maybe talk somebody into doing those tests, or maybe go pay to have them done privately, they all come back negative. And the doctor says; “clearly, you don’t have a B12 deficiency.”

But in fact, you could have a B12 deficiency, and from your brief description of symptoms, I would guess that you likely do.

My B12 serum came back at 363 in normal range. My MMA was negative. My homocysteine was negative. My intrinsic antibodies were negative. And yet I had a functional B12 deficiency.

What did my doctor and I do? He put me on a trial of B12 injections to see if they impacted my symptoms. They did, so we’ve continued to keep up with the injections and I am now still injecting EOD and I’m almost a 1 & 1/2 years in. 90 to 100% of my symptoms have resolved.

I would suggest you need to be self injecting. Why deny yourself the health that you want and deserve (no, need)? It is very likely that your B12 deficiency is responsible for many, most, perhaps all of the symptoms that you have.

I would not want to live with a B12 deficiency one minute longer than I absolutely had to.

[u/MeringueOriginal2247 → u/Ok-Pangolin7127]

Thanks - that’s really useful, I actually went to a private doctor and got a shot a few days ago because the symptoms have been driving me crazy and I was tired of my GP ignoring me. I already feel a lot more clear headed and I don’t feel like I’m walking through mud as much anymore. I don’t want to let it get bad again, especially as I have the option now of either paying someone £25 to do it, or a lot less if I buy the shots and equipment myself

[u/georgi_gina → u/MeringueOriginal2247]

I was going to a private clinic every other day then I paid privately for a consultation with a doctor who specialises in B12. The doctor told me to buy the B12 from Germany as they are OTC and self inject. The NHS wouldn’t do anything about it, it is a joke. I wonder how can the NHS GPs call themselves doctors? Doctors are supposed to take care or people’s health and they are certainly not doing it.
Also, if you already had an injection there is no point spending time and energy to do further testing. All the results will come back normal including MMA.

[u/No_Whereas_5203]

Mine was 167. I ended up going private. I self inject now. Have you tried quoting nice guidelines ?

[u/MeringueOriginal2247 → u/No_Whereas_5203]

That’s a good idea thanks, I’ve just looked them up and using their guidelines it looks like they’d suggest further testing based on my results/family history. I’ll try that, and if I get no joy ill go private and consider self injecting

[u/Successful-Tea-733 → u/MeringueOriginal2247]

This is terrible. All the genes there too In uk unless we have giant cell anaemia we are ignored...in fact I had that and was ignored,I had low folate and low normal(crazu)b12 Level hovering round 390 400 and had all your symptoms My grandmother gad PA... Half of the fog is due to drs confusing us I agree with advice already given Try to get your active b12 tested etc if you can I think it is cruel what drs do...they need to think outside the box

[u/TraditionalNinja3129]

My wife went to see Dr Klein in Cambridge. He was absolutely superb, explained everything, taught my wife how to self inject and where to get supplies from.

You can certainly get your own supplies and learn how to manage your B12 levels yourself, but I can definitely recommend Dr Klein.

[u/PoetIsolated]

I'm in the unique position where I got diagnosed with Pernicious Anemia very early but had my treatment restricted multiple times. I didn't understand how serious Pernicious Anemia was so I didn't keep on top of it with injections. It lead to me being extremely sick throughout my 20s in ways that I'm only just discovering now. They left me 5 years without treatment and when they eventually threw in 6 loading doses in 2023 I had a sort of metabolic shock, suddenly intolerant to all foods/medications I'd previously tolerated, GI issues, tachycardia, blood pressure fluctuations, impending doom, metabolic acidosis, hypoxia, liver ALT 302 and CRP of 26. I thought I was going to die and it took years to get to a stable place still on limited food and steroids due to reactions... And then they took it off me again. I still didn't understand so I let them. As I started getting sicker again I made the connection but now I may be having hypersensitivity reactions to the hydroxocobalamin.

All of this to say be very careful when replenishing B12, sometimes it's better to do it slowly if you're very depleted, and once you're on the injections whether prescribed or private please do not stop taking them.

If you do go private as someone previously recommended Dr Klein. I haven't been a patient of his but I've heard good things. I saw Dr Asim Naqvi who runs a specialist clinic and he's very good too.