I need advice as to what is going on with me šI was diagnosed privately with pernicious anaemia in nov 2022, I also have hashimotos and my vit d was very low.
I had many neuro symptoms to begin with pins and needles in my legs,numb foot crawling skin sensations and balance issues, double vision,extreme tiredness I felt very ill but gp kept saying my b12 wasnt 'very low' it was 198 and we have PA in the family š
I've been si eod and was advised to take 5mgs folic acid on day of injection .I have had regular blood tests through medichecks to check iron ,folate and vit d. My iron dropped last summer and I had an iron infusion in july,
I felt a bit rough for a couple of weeks afterwards but not as bad as I did before it !
I have tried on two occasions to reduce b12 to every 3 days but after 2/3 weeks I feel the extreme tiredness returning, balance is off and eyesight so back to eod.
My last blood test in nov showed folate 45nmol so was advised to reduce to 5mgs once a week while continuing eod b12, Dizziness and tiredness returned after 2 weeks so I bought sublingual folic acid and have been taking 2,400 mcgs on day of injection for 1 week. Keeping an eye on potassium through diet.
For the past 3 days I have had facial tingling again and muscle / nerve jerks in one leg, very strange, I have had shingles before and the face tingling feels like that, but no rash ?
I ordered a new batch of b12 as the last lot I ordered was delivered and left on my doorstep last summer in the heat so thought maybe it had been ruined, I started the new batch 6 days ago.
So after my very long post my question is,
Could these symptoms be reversing out symptoms teturning due to last lot of b12 being ineffectual?
Could my folate have dropped in that time so b12 wasnt working ?
I know this journey is life long, and very up and down, I had no support from my old gp although they did acknowledge the PA diagnosis and it is on my records, I have recently changed surgeries but am loathe to start another battle about 'nice guidlines' etc, I really havent got it in me anymore and want to see light at the end of the long dark tunnel I'm in at the moment,