Pernicious Anaemia Society
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Losing Hope

Been to see different doc this morn cos of hump at top of spine Apparently it a fat deposit and the stiff neck I have had for four weeks and back problems is just tension So tackled her about loading dose quoting BNF she says they usually give 5 over two weeks then every 3 months !!Asked why my intrinsic factor hadn't been tested she doing that and it said on my initial results if no improvement refer to haematology Cos my B12 now 338 they see that as normal So asked her about inactive and active B12 she don't know what I talking about God alone can help Think prob hav to change docs

2 Replies

Are you on steroids? Have you had cortisol tested? The fat deposit sounds like it might be a 'buffalo hump' seen in Cushing's.


Further to jade s's reply, I have heard that underactive thyroid problems can also cause fat deposit between shoulders at back of neck -and there is a link between thyroid problems and B12 def. so I would investigate that.

If you have already had any B12 injections (and/or supplements) you would expect your results to be a lot higher that 338. What did it start at? There is no way she can tell what your 'normal' level was now, assuming you have had treatment. For me, the raised MMA levels in Methymalonic Acid test (blood test) were the 2nd indicator for my doctor, and got me a second loading set and better frequency of injections. Most of the tests on offer have poor accuracy records and can be skewed once treatment has started- I was lucky. You alone know how you feel, so ask for tests when you feel depleted and certainly NOT when you've just had injection because this will be likely very high and could be used forever as a reason not to continue treatment!

Don't change doctors if you think they are otherwise very good- it is worth persisting because there are very few doctors that seem to be familiar with current guidelines. If you don't trust your current doctor however, ask others locally for their recommmendations and change. Get someone with a good reputation- this whole process takes effort and time to get right, yours and theirs, so if you feel really low, get someone to go with you for support. Pernicious Anaemia Society can help if you join them. Don't give up. Best of luck.


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