HI everyone. First a bit of background; I was finally diagnosed with low B12 (level 82) in June 2016 after over two years of going back and forth to the doctor with various intermittent symptoms, having blood tests and a colonoscopy. My IF was tested and came back as OK - though I know now that this doesn't really mean anything. I was given the loading injections which took a few weeks to properly kick in but eventually improved my symptoms massively. I was then put on the 3 monthly maintenance injections but have found that my physical symptoms start to return after about 4-6 weeks and my psychological symptoms follow shortly thereafter. The doctor agreed to let me have injections at 10 weeks but the symptoms were still kicking in after 4-6 weeks. I get to the point about 3 weeks before my injection is due when I can't concentrate, I am ridiculously tearful about nothing, I feel remote from everyone and everything and just generally want to isolate myself. So I took myself back to the doctor and he decided to do some more blood tests before my next injection was due.
I was back at the doctor yesterday for the results of those tests; his conclusion my B12 was 2000 (this was obviously 10 weeks post jab) and therefore I should stick with 12 weeks and could look to move to every 6 months. The blood tests also showed that now my Vit D level is low (I know it has been winter but I spend at least 2 hours outside every day walking the dog so of all people mine shouldn't be low) and my folate levels are low so I am now on courses of oral tablets for both these. As a side note I was told last year they had tested my folate and it was fine.
I tried to explain just how bad things got before the last two injections but because I always see him about 10 days after a jab and I feel like a completely different person I don't think he truly gets just what a bad place I get to. He initially wanted to wait until I had finished the Vit D and folate courses before doing anything else but when I mentioned I had BUPA cover he agreed to refer me to a gastro-entrologist as he suspects its a mal-absorption issue. My diet is healthy and balanced (well OK maybe a bit too much chocolate! )
The last injection has made a big difference to my emotional state - though not as big a pick up as previous injections - and to some of my physical symptoms but this time seems to have had no impact on my bowel issues. Possible this is the low folate? I have been tested and cleared for coeliac disease.
I am obviously going to go ahead with the referral when it comes through but wonder if I should also be seeing a haematologist?
What do I do about doctor decreasing frequency of my injections when I already felt I was waiting too long?
The folic acid tablets I have being given say you shouldn't take them if you have a B12 deficiency or PA. Since the doctor prescribed them - is it ok to take them or is he assuming I don't have a B12 deficiency based on latest serum B12?
Could all of this be caused by perimenopause?
I have lots more questions but think that's probably enough for now and I am not expecting all the answers from you guys but any advice you can give would be extremely welcome. This has all taken it's toll on me and it's had a dreadful impact on my family too as I am pretty awful to live with for a large proportion of the time.
Thanks in advance.