Hi all, I have been reading posts for a few weeks now after finding the society and thought I should introduce myself (It’s going to be a long one so thank you if you stick it out until the end!). I am 27 and was diagnosed with a b12 and Vitamin D deficiency at the beginning of July 2015. I have put a table of my results below if anyone wants to take a look and advise. I have only put in those that were below or above the normal range if not the usual b12, folate, ferritin etc. I am in the UK, and would prefer not to self supplement without trying to go through my doctor first, as she has listened and seems open to discussion/learning. (No wonder it’s so hard to get an appointment with her!)
I was then prescribed Vit D3 tablets 20000unit capsule twice a week for 10 weeks in the middle of July. Beginning of August I was tested again for b12 levels and anti-IF antibodies. Antibodies came back negative and b12 levels still low so I was told 6 loading doses and then every 3 months for life. At the time the only symptom I had raised was tiredness.
I had my first injection some weeks later due to me being away on the 1st September. And thought they seemed to work. I had more energy and wasn’t falling asleep any more, but I could still sleep for many hours a night and would fall asleep very quickly.
At the end of June I mentioned that achey joints/ clicking had returned after this was put down to the Vit D deficiency. I was referred to Rheumatology. The Rheumatologist was not concerned with the clicking and just said that I had loose joints, more than likely something I was born with (when my legs are straight then bend slightly inwards at the knee). She did another Protein blood test (unsure what it was) but said that if that came back normal then it looked like my C Reactive protein high results were normal for me. Which it did.
It wasn’t until the last couple of injections I thought that they weren’t lasting as long. I began to do some research and discovered the Pernicious Anaemia society. I printed off the symptoms lists and was surprised at how many symptoms I had, still mildly but that have got gradually worse over the last 5 or so years. Things that I wouldn’t have thought were symptoms, I thought that it was just me and who I am. Last time I saw my doctor a few weeks ago I took the lists and showed her, she was surprised by one or two of the symptoms, in particular tinnitus (I have a history of ENT problems, so put it down to the problems I had had, as its not constant but happens occasionally). I also get pins and needles quite quickly when putting pressure on my limbs, i.e. cross legged or sleeping with arms/hands under pillow. I feel unbalanced around heights or uneven ground, and have to look at the floor when walking around either of those or down stairs. I have anxiety with relation to things I cannot predict (mainly flying bugs – can’t predict where they are going) which seems to have increased the last 5 or 6 years. All these symptoms are intermittent and by no means as bad as some of the people whose stories I have read, but I certainly don’t want them to get any worse.
She said that she wanted to test my B12 levels to see what they were like around 4 weeks after my last injection, to which I mentioned that the tests weren’t very reliable, and that I thought there was another test for active-B12 that could be done, but I didn’t have the research with me. She said that we would test the B12 as she wanted to test the C Reactive Protein again anyway (which we will continue to do every 6 months for the foreseeable future). She said that if I could find that there was another test we could do (she didn’t know of one) then she would be open to doing it. She also said that we would look at increasing my injections. So she is not opposed to doing this.
So the last blood test results have appeared on my online records today so thought I would share my story to date and ask for some advice for when I speak to my doctor next Friday to discuss these latest results.
1.Is there likely to be any link between b12 deficiency and elevated C Reactive Proteins?
2.Where can I find information on the active b12 test?
3.I’m sure I read something about b12 being used for the myelin sheath around muscles, which I’m sure builds up at the joints, which if mine is fading due to not enough B12 would explain the achey joints. Not painful but I am aware of them, if that makes sense. Does anyone have any links?
4.My Serum Creatinine levels were below the normal range but I had not noticed this before. Does anyone know if this could be linked with b12? What is it and what does it do?
5.Are there any other things I should look into before I speak to my doctor?
6.I’ve read about how b12 that is injected is split into two different types when it bonds with something else. One of these Methylcobalamin? Is the one that cells can use. I know you can buy sublinguals on Amazon. Are they any good/likely to work?
Thanks for sticking it out and reading til the end! Any help or advice much appreciated.