advice pls....

[bollin]

do you know if there is a list of UK doctors that are B12 experts?

I have parietal cell antibodies but not IF antibodies so not diagnosed with pernicious anaemia. Bloods in Aug '23 showed B12 at 150 so was started in B12 injections (I had no symptoms of low b12 apart from slightly tired) Had loading dose, made me feel slightly more wired than usual. Had one 3 months after loading dose - which was Jan '24. All went downhill after that - terrible debilitating symptoms that came on abruptly the day after the injection - anxiety, depression, brain fog, no appetite, extreme fatigue, insomnia. Life has been awful since, hardly been ablue to function. I am so angry as I didn't have symptoms to begin with. My doctor thinks it's depression and wants me to go on SSR's but I know it started when I had the last B12 injection. Never had depression or anxiety before. I wasn't advised to have good levels of folate/ferritin before starting or to take co-factors with the injections. My levels aren't optimal. I haven't had b12 since Jan.

I was wondering if anyone knows a good GP I can go to for advice who will check all vitamin levels (especially ALL B's), homocysteine etc and understands 'refeeding syndrome'. Thanks

[Sleepybunny]

Hi bollin,

Welcome to the forum.

Sadly many UK forum members here have met GPs, specialists and other health professionals whose understanding of PA and B12 deficiency is limited.

Some people can experience a drop in potassium levels when B12 injections start. Did GP check your potassium levels?

It's quite common for people to report their symptoms getting worse before starting to improve.

It's rare but possible to have an allergic reaction to B12 injections.

Some people can be sensitive to cobalt and hydroxocobalamin contains cobalt.

nhs.uk/medicines/hydroxocob...

I left detailed replies in this thread which might have something useful.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.

[boisland]

Dr. Andrew Klein of Cambridge University Iron Clinic has helped many with B12 deficiency. If you are having a problem getting a diagnosis you might want to consider giving Dr. Klein a call. This would be going private, you would have to pay. I believe he does video calls but you would need to verify that.

[Mixteca in reply to boisland]

He does do video calls.

[Bellabab]

As you have antibodies that attack the parietal cells you are unable to produce intrinsic factor or stomach acid. That means you cannot absorb B12 in large enough quantities & that make you ill. Hence you have PA. Its possible to also have antibodies that attack the intrinsic factor as well.

[bollin in reply to Bellabab]

Hi, that's so annoying as I was told because I only had parietal cell antibodies and not IF antibodies that it can't be PA. I was diagnosed this in 2019 and have done nothing about it re B12 but my levels were ok until summer '23. I know everyone talks about symptoms being worse but I was so floored at first I cannot bear to have another injection. I was so ill I couldn't function at all. Prior to the injection I was great! Has anyone managed on just taking sublingual? I haven't had any B12 since my injection in January and levels were 408 in June. Need to test again.

Thanks