Hi again, 10 weeks ago after 5 injections my B12 levels were report to have gone from 113 to 'over 2000' it took a few weeks to begin to feel better but over time my energy levels increased. My GP said I would not need anymore B12 for a few years as my IF/parietal cells was negative and it was probably diet related. I have worked hard to increase dietary food that contains B12 even though I dislike many of the things I am eating.
Last week I began to feel very unwell with extreme fatigue muscle aches pins and needles. My GP agreed to repeat B12 after I told him I had been supplementing and also taking Vit D. The result has come back to 413 which is within normal limits but dropped dramatically, the lab have commented that there will be enough B12 for 2 years but isn't this drop pretty dramatic, I do not know where to go from here? Any advice would be helpful please
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Only1bigT
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If you eat meat/dairy then you shouldn't have become B12 deficient in the first place. Are you on medication that will prevent absorption? For example metformin or antacids?
If you had a clinical response with B12 then BCSH guidelines say to continue even if antibodies are negative. The tests are only 50% sensitivity so they call it IF negative PA. Are you anaemic or do you have large red blood cells? Macrocytosis. That helps but is only present 70% people. The people without anaemia struggle to get diagnosis but are just as badly effected. In fact research has shown an inverse correlation between anaemia and neurological symptoms in B12 deficiency.
Read through the forum and the links to guidelines and go back to your GP with someone to put forward your case. Having a symptoms diary will be helpful.
If all else fails you have the option of self treatment which there are many posts about here.
Thank you for quick response. I have read endlessly the guideline etc and spoken to GP about them I have appt tomorrow to discuss results but apparently all results are within normal range including ferritin folic acid, Vit D and thyroid function. Hopefully he will be more supportive than the one I spoke to re results as I think the drop must have some significance
All the very best. If you can, take someone supportive with you. If all else fails, try asking them for an alternative reason for your initial improvement then, now injections have stopped, deterioration. Yes that is also quite a dramatic drop. If it was me, I would first try GP, consider asking for gastro referral to see if there is another reason.
Also have you been tested for coeliac?
Then you are left with considering self treatment.
Thanks again, it was gastrologist that arranged initial b12 investigation after a normal gastroscopy for a cough that they thought was caused by acid reflux I was treated with a PPI but this was stopped months before loading dose and nil since. Caeliac result negative. I do suffer with reflux but been told it's because of a weak gastric sphincter but just putting up with cough rather than take PPI.
I swear to god that doctors actually choose to read the bits they WANT to read. That very article telling your doctor that you are in range is probably the very one telling him to treat according to symptoms rather than test results but he will have selective reading eyes!! They don't like patients who research their own problems because it knocks them off their pedestals, means they have to acknowledge you have a brain and they can no longer feel in charge.
Even if one plays their silly game he/she cannot deny that your levels (expected to last years) have only lasted a few weeks, ergo, you have a major problem.
Do as secondchance suggest, get copies and tell us the results, someone here will know how to interpret them and give you the information you need to sound authoritative and knowledgeable. go get'em!
Thanks Shevie but in fairness it was a comment from the actual lab that he was reporting back to me which I will ask to see tomorrow. The problem I have is that I'm an experienced nurse and he will know that I've done lots of research which often gets the comment ' we know what nurse are like a headache must be a brain tumour' so as a nurse you are often judged inspire of investigation results!! I have a busy life and have no time to feel unwell but it feels sometimes as if they think I'm just after time off work which thus far I have not taken even at my lowest ebb, this seems to count for nothing though. I'll keep going and if necessary will self treat thanks again.
If you are in the UK then your results should have a note on them as there was an advisory that if there are symptoms then treat as for PA regardless of whether you are over the bottom limit. I forget the exact wording, and someone here should have a link to the advisory. Hope this helps some, it's vague I know, I've just remembered it's an advisory issued by NEQAS. I think I got that right.
PA in the true sense isn't the only cause of B12D - your GP needs to get his head around this fact
Other causes include:
drop in acid levels in the stomach as you get older - even though you have been told your acid reflux problems are down to a problem with a valve they may actually be related to this and B12D
Gastric abnormalities affecting the ileum - including gastric surgery and genetic problems.
Drug interactions - including treatments for acid reflux such as omeprazole ... in fact a whole raft of them are prescribed to treat symptoms that are down to B12D so just accelerate the problem.
As others say - fact that you have dairy and meat in your diet means that it is unlikely to be dietary - presumption should be that it isn't dietary unless a specific absence of B12 in diet can be identified
People vary considerably in how long they retain B12 and it can vary from cyano to hydrox etc. Its water soluble so most of what is injected tends to get excreted in urine quite quickly.
You may have a couple of years in your bloodstream right now but if you have an absorption problem - because recycling relies upon liver and ileum - your body is going to be struggling to recycle anything so that doesn't really mean a lot.
Eligen B12 is a just launched small aspirin size daily pill (need prescription) that is equivalent to IM injections. See eligenb12.com for info. The company that launched the product is Emisphere Technologies (biotech company).
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