B12 deficient but now too high and treatment removed.

[Chunkyhez]

Hi I hope someone may be able to advise me. I was diagnosed with b12 deficiency 18 months ago and low vital do. I had the loading dosession and have been having 3 monthly injection since. Over the last 3 months my symptoms have been returning. Terrible fatigue, dizziness and tingling and tremors in the hands. I have spoken with three GPS now who seem to think it is emotional! I am not depressed. I went for my injection on Friday and was advised my b12 levels are now too high at 1200. She wold not give me my injection and I have to have my b12 checked again in December. The test that showed b12 high was taken 8 weeks after my injection. My white blood cells count is always slightly raised when checked two. What should I do as my symptoms continue? Thanks.

[clivealive Forum Support]

Hi Chunkyhez has your Folate been tested recently?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body /

Was your low Vitamin D treated?

[Chunkyhez in reply to clivealive]

Hi Clivealive thank you for responding. I am unsure about my folate I have had that many tests but will ask. I have most of those symptoms particularly lack of taste, diarrhoea and muscle weakness in the legs. I have tremors in the hands that gp seems to think is anxiety but I'm not anxious! Vitamin d was treated with supplements and has been ok since. Thanks again for your response.

[Gambit62 Administrator]

Please take a look through the materials in the pinned posts.

If you are UK based then suggest you write to your GP pointing out that current guidelines do not support using serum B12 levels as a guide to treatment after loading shots. Normal range does not apply after B12 shots.

You could also point them at the area of the PAS website aimed at helping GPs to improve the diagnosis and treatment of patients with B12 deficiency in general and PA as the cause in particular.

pernicious-anaemia-society....

[Chunkyhez]

Well been back to GP this evening. Feel like I am talking to a brick wall. Advised about the serum test being inaccurate and she told that it is accurate! And didnt know about another test. She is testing my intrinsic factor and b12 again and says if this comes back OK then it's not physical and we can talk about other ways to make me feel better. Will this test help? Starting to think maybe I am going nuts!!! Does anyone know if there is way to have the test for active b12 privately in the UK? Thanks.

[SlowDragon in reply to Chunkyhez]

Yes you can get active test, plus MMA (methylalonic acid) and homocysteine

See Medichecks

Gambit62 can advise if this good plan and if you need all three tested

[KimberinUS]

They need to check your folate and ferritin levels! B12 does not work on its own.

[Chunkyhez]

Well got test results today. Couldn't see a GP just had receptionist tell me over phone. B12 dropped from 1200 to 420 in 4 weeks but as it is still in normal range GP has written no further action. Foliate normal and intrinsic factor normal. Looks like I am just gonna have to put up with this now as I don't seem to be getting anywhere with GP. 😣 Does anyone know if it is worth getting the active b12 test done privately since the intrinsic factor came back normal?