Still feeling rubbish

Hi, I was diagnosed with low b12 and low iron blood levels last year. My initial bloods were negative for parietal cell antibodies, but were found to be positive on a subsequent test. I was given 5 loading doses of vit b12 IM initially and then they were repeated as my neurological symptoms were not improving. My haematologist recommended that I should only receive 3 monthly injections thereafter as any more would be of no benefit to me (according to them). I have also been treated for low vit d and low iron levels. I have been seen by neurologist and have had MRI which was OK , but have to have nerve conduction studies. I have been referred to gastro enterologist also (due to increased risk of developing gastric cancer. Presently, I am still very fatigued and have been experiencing intermittent muscle twitches as well as tingling hands and legs. My hips, knees and ankles are painful. My mouth is very painful with frequent ulcers and red rawness on both sides of my tongue and in my mouth. I feel like a hypochondriac each time I go to my gp . Any suggestions (apart from shoot me now !) . Oh, and my phosphate levels are low again. My gp wishes to repeat my vit b12 and phosphate bloods again . Are all these symptoms related to pernicious anaemia ? I would appreciate some advice , thanks in advance .

6 Replies

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  • Your haematologist needs to read the second paragraph of the B12 entry in the British National Formulary. The first paragraph says that 3 monthly jabs Should be given after the loading doses. The second paragraph says that patients with neurological symptoms need jabs every two months.

  • Thanks, I am back at gp next week to get bloods done again. I will mention this advice .

  • How did you get on with the iron treatment? Is your ferritin level high enough now?

  • Gp says ferritin levels are OK.

  • How is your folate level? You are unable to make use of the injected b12 if they are not above no range. Get your doctor to prescribe 5 mg folic acid a day or take the equivalent in over the counter pills. I still have macrocytic anaemia after 5 years of b12 injections because my inadequate folate levels were missed. Only a bit below range so was told they were ok. It wasn't until I got my own print out of my bloods that I saw the problem for myself.

  • Thanks, my gp told me my folate levels were OK . Going back next week to get more bloods done .

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