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.
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1.Is there likely to be any link between b12 deficiency and elevated C Reactive Proteins?
C-reactive protein is a measure of inflammation and can be useful to measure flare ups of different diseases such as Rhematoid arthritis (and various others) and can be high in autoimmune diseases. I don't have time to look into whether Pernicious Anaemia (as it is an autoimmune disease) leads to an increase in CRP, sorry, but it may be possible. The test for Intrinsic factor antibodies is not great and can give a false negative result due to the sensitivity of the test - testing negative does not necessarily mean you don't have PA.
Just to make you aware but the active B12 test is just a measure of the B12 in the blood (albeit bound to the particular protein it needs to be bound to, to be used by cells) and not a measure of whether the cells can actually utilise it.
It is possible (though rare) to have a functional B12 deficiency which could mean normal/high blood B12 levels but very little being able to be used by the cells.
MMA and Homocysteine are other tests that can be done and may give more useful information than an active B12 test as these are raised when a B12 deficiency is present.
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?
Myelin is the coating that protects and insulates nerves. If you think of a nerve being like an electrical wire, the myelin is the insulating plasticy coating that stops the wire itself from being damaged and short circuiting. If that coating is damaged (or not being made properly - it is not fully understood which may happen with B12 def / PA) then problems with the nerves eg peripheral neuropathy, cramps (from muscles being triggered to contract by the nerves erroneously) and a bunch of other neurological symtoms can occur.
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?
It is for the most part included in general blood tests to check kidney function is ok. High levels may indicate Kidney problems. Low levels are not usually a problem from what I can tell. Mine is just slightly low too. My liver checks were ok and am veggie (and sometimes don't eat enough protein) so I've been working on eating a bit more protein in my diet.
5.Are there any other things I should look into before I speak to my doctor?
Have a read of the various things in the pinned posts (LHS if on a PC or bottom if on a phone ). If you are having neurological symptoms you should be getting injections every 2 months instead of 3 as per the BJH guidelines. This also gives details of the MMA etc tests and may be a good thing to give to your GP if they haven't seen it.
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?
Hydroxocobalamin and cyanocobalamin will be converted into methylcobalamin and adenosylcobalamin in the body. Methyl and adenosyl-cobalamin are the forms used by the body. The paper below states taking the methyl or adenosyl forms are unlikely to be any better than taking the cyano or hydroxo forms but more evidence is needed really!
It is up to you re sublinguals / sprays / nasal doses. Some people swear by them, some find they don't help. With a B12 absorbance problem only ~1% will be likely to be absorbed but since these sublinguals / sprays (whatever form of cobalamin they are) are high dose they may be enough to keep you ticking along between injections... only 1 way to find out!
Hope this helps... Ask away if you have any other questions / problems!
No worries1 I hope some of it was useful. I'd see if your GP is willing to investigate a functional B12 deficiency - you may need injections much more frequently than 3 months.
You should at least be getting your injections more frequently. The British National Formulary (a copy of which should be on your doctors desk!) entry for Hydroxocobalamin states:
Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.
I know how horrible balance problems are. One of the discs in my lower back is/was badly compressing part of my sciatic nerve according to an MRI. It was painful for a couple of weeks (and isn't painful now - touch wood!) and is much improved but at times part of my foot still goes numb/pins and needles / burning sensation and my balance goes to pot. Nothing like going from having very good balance to tripping over nothing and being unable to walk anywhere without staring at the ground all the time.
I'm on a 2 monthly B12 injection schedule but it only seems to last me ~6 weeks then I feel like I've run out of steam.
Yeah thanks. To be fair to her I thought they were working and hadn't mentioned any other symptoms apart from whey joints. However because I felt that I was getting tired earlier and earlier with the last couple of injections I then looked and found the symptoms list, so I have only just mentioned the others to her, as I have had them minimally (but gradually getting worse) over the last 5 or 6 years I didn't realise they were actual symptoms, just thought I was a careful person who liked to look where they were walking and just a little clumsy. I'll see what she has read up on when I speak to her next week. Looked like she was going to have a look to see what she could find too.
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