Hi, me again. Had my GP app yesterday foll blood tests 10th March.
The blood tests were taken again in preparation for seeing haematologist but my referral was rejected - before I had even had these bloods drawn. Haematology rejected my referral on Total B12 blood level . Note I have nerve damage and neuro symptoms.
My question is: why do haematologists not recognise that supplementing with B12 will raise levels? Do they just think, well there's no absorption problem so carry on supplementing? So then I suppose they do not recognise conversion issues? Or the issue of B12 actualy getting into the cell to be effective in metabolism. Or genetic methylation issues? I feel as though if I don't understand their mindset then it is impossible to fight my case - to at least get seen.
Because of sudden onset of worrying symptoms and then realising that many I had been ignoring for a long time. But all coming together at once made me horrified. So I have been learning from you since the start in January. I supplemented for 2-3 days with a complex, then realised I shouldn't have, but it was, I think 3weeks before testing and had only been 200+mcg of B12. But previous to last April I had supplemented on and off for years and had managed to raise my total B12 blood level to 551 and uninformed as I was, I had been thrilled and stopped supplementing for 8months before onset of symptoms. During those 8 months of not supplementing my B12 had fallen a little to 400+. After the blood tests because of symptoms I was desparate to start supplemementing, and am using B12 sublingual 5000mcg, sometimes 10,000mcg per day. My GP booked me in for the 10/3 blood draw and when I raised the question re supplementation and what was the point, she said I was to continue supplementing and that it wouldn't matter! Because of symptoms, I did so, thinking to myself that there was some skewed thought process somewhere, but I was more concerned about symptoms than silly games and needed to get the B12 in me.
I have my results and now am worried re folate. Which is not in my supplement.
My total B12 shows 499ng/L (197-771) not a surprise, re prev blood tests and supplementation.
But my folate is now more than 20 ug/L (they seem to have altered lab reporting of folate recently. Just described as >20ug/L - so high off top of the range, but no idea how high as presume don't measure higher (no range specified but was (4.6 -18.7) and in Nov my folate was 10.7ug/L
Now my concern all along was that my B12 is not getting into cells and so deficient. If Folate is so high then it is not being used up I presume by B12. Which is a scary situation isn't it? Low B12 in cells?/high folate
The lab comment is Normal/stop supplementing folate. Why do they presume supplementing with folate in the case of high folate. But in the case of B12 levels within normal range - they don't consider supplementation maybe having an effect on results!!
High folate off the range is indicative of B12 deficiency
My symptoms are indicative of B12 deficiency
B12 involved in haemoglobin production. My MCHC (concentration of haemoglobin in cells) has always been abnormal low and my MCH (amount of haemoglobin in cells) is bottom of the range.
So all above indicators
My MCV (size) is not enlarged. However any enlargement would be cancelled out by low serum iron which tends to make RBC smaller.
This is why my GP wanted me to see a haematologist and discuss.
I want to report him to the GMC for ignoring haematology guidelines - treat symptoms. But feel too ill and stressed to cope with the ensuing mess. According to the GMC website they are there to ensure patient confidence in our healthcare providers so that we feel that our trust in them is not misplaced - lol