Pernicious Anaemia Society
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New - help with bloods and advice please

New - help with bloods and advice please

My husband has recently had his blood results back and I'm looking for some advice regarding his GPs suggested treatment regime.

He has a lot of symptoms which I believe relate to B12, but as he also has a brain tumour there may be some overlap. He is having very severe pain in his toes which he takes morphine to control. He spends most of his day with his feet raised, but when he puts them on the floor gets pins and needles and pain and has to keep lifting his feet to get any relief. He also seems to get muscle spasms in his legs. On top of this there's depression and greater confusion, but this could be tumour related.

His GP has prescribed Hydroxocobalamin 5x1mg (once a week for 5 weeks) and Stexerol-d3 25000u one every 2 weeks for 3 doses.

I'm a bit confused as I thought he would be on a greater dose of B12, and I'm looking for advice on whether to challenge his GP regarding the dose he has prescribed.

Thanks in advance.

4 Replies

Has his GP said anything about his thyroid levels? TSH is a tad high and his FT4 is top of the range. Any T3 test to see if he's converting? Not sure if the tumour might affect these levels?

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Thanks Silver_Fairy. GP has agreed to retest thyroid including antibodies in 6 weeks.. I have hashimotos with poor conversion and have already requested T3 also tested. Just not sure how B12 is usually treated.

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Hi PashaW

Looking at the results your husband has a vitamin D deficiency which it is good he is being given treatment for this. Sorry I'm not used to looking at bone profile results so not sure what these results mean though they may well be due to his Vit D deficiency - something to discuss with his Doc.

It may be an idea to post his thyroid results on the thyroidUK group here for thyroid related advice.

His FBC results indicate he has macrocytic anaemia (large red blood cells) which is most probably caused by his very low B12 levels. What are his B12 related symptoms? I guess it may be hard to isolate which symptoms are due to his low B12, low Vit D and tumour, but it sounds like he has neurological symptoms.

With no neurological symptoms treatment is injections every other day (6 in all) then injections every 3 months. Some areas appear to do 5 injections instead.

With neurological symptoms treatment is injections every other day until no further improvement (with a review at 3 weeks) then injections every 2 months.

There are several pinned posts that may be useful to look at (on the right or at the bottom on a phone). Especially look at the links in this one (which includes a link to the BSH treatment guidelines) -

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Thanks taka. You're right, I am struggling to know what is tumour and what is B12. He's definitely struggling more to explain himself and I know he's getting strange tingling and pain in his feet and his balance is off, all of which may be B12. My concern is that he won't be given sufficient injections to reverse his symptoms - thanks for the BSH guidelines.

The GP seems to think the 5 injections will do the trick and is not planning to retest, so I may have to push a little on that one if he doesn't seem to be improving. He's having a scan for his tumour next week so that may help to determine the root of the neuro problems.

I am hypothyroid and have suspected my husband had problems for years - nagged GP regularly for him to be tested, so I'll be keeping a close eye on his TSH/T3/T4 and have received great advice regarding my treatment from the thyroid forum.

Thank you for your help. Unfortunately my husband's tumour seems to muddy the water and it can be difficult to get the GP to see past that and to treat other issues to try and provide him with the best quality of life possible.


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