I was referred to an endocrinologist 5 months ago due to a range of issues including extreme tiredness and neurological symptoms. Blood tests hadn't shown anything conclusive other than that my B12 was at 165 and I was also low in vit D, however my GP said these were not low enough to require treatment (I've since been told by people on here that B12 at 165 is definitely low enough to cause symptoms and require treatment, but I didn't know this at the time). Nonetheless, I decided to start taking a B12 supplement which gave 400% of the B12 RDA plus folate, other B vitamins and vit C. I also started taking a D3 supplement.
I've seen the consultant 3 times so far and have another appointment next week. After my first appointment I had some blood tests and got the results at my second appointment - they apparently ruled out thyroid disfunction and coeliac disease. I had also been tested for adrenal disfunction and the results were abnormal, but the consultant felt it wasn't a reliable result as I was on the pill. He told me to come off the pill for 6 weeks and then go for another test, which I did - I'll find out the results at my next appointment. I also had a repeat test for B12 and D and a test for intrinsic factor.
Despite my B12 being low, and the consultant telling me this could suggest PA, no treatment was discussed. I didn't know then what PA was or what the symptoms could be, but when I went home I read up on them and discovered that they matched nearly all of the symptoms I was getting. I was alarmed by the info I read about permanent damage resulting from untreated B12 deficiency, so I contacted the consultant to ask about this. He told me that the repeat B12 test had shown that it had gone up to 235, which suggested that the supplement was working and that I didn't have PA, and that it was now within normal range so I did not need any treatment. I had not noticed any improvement in my symptoms since starting to take the B12 supplement 2 months earlier, which seemed to back up his view that B12 deficiency was not causing my symptoms, however I decided to start using an oral B12 spray which gives 48,000% of the RDA to see if this had more effect. After a couple of weeks of using this daily, I started to notice an improvement in my symptoms. I've now been using it for about a month and I feel MUCH better than I did before. I wasn't certain it was due to the B12 spray, however last week I went away for 5 days and forgot to take the spray with me, and I noticed a significant change in my mood, energy levels and all of the other symptoms that had previously improved. After a few days back home, taking the B12 spray again, I feel back to how I was before the break in taking it.
I'm pretty convinced now that my symptoms were/are caused by B12 deficiency, and I know from reading the posts here that people can still have symptoms even when their B12 is supposedly within "normal" range, and that the results of tests when you're taking a supplement are pretty meaningless. I'm just worried that when I see the consultant again he'll tell me that my B12 is normal so that can't be the problem. I should get the results of the test for IF, so if that's abnormal then I guess it will be more conclusive, but if those results are normal as well I'm not sure what to do. I understand from reading posts on here that IF results are not very reliable, and also that there are different types of B12 tests. What tests are the most reliable for showing up PA? Is there anything else I should ask my consultant to do, if the previous B12 and IF tests are within normal range? I don't want to be trying to tell my consultant how to do his job, but equally I obviously don't want to sit back and do nothing if I do have a condition that needs to be treated.
For what it's worth, my consultant has been very good about taking my concerns seriously and he made a point of telling me that he considers the patient's symptoms as well as their test results, so I do have faith that he is doing a good job and will listen to what I tell him. At my last appointment he told me that he was going to speak to a colleague in haematology about me to discuss whether my B12 level could be causing my symptoms, so hopefully this will have led to something useful, but any advice I can get from people on here would be really helpful so that I can be prepared if he still says he hasn't found anything wrong with me.