Pernicious Anaemia Society
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Beginner1 - need more help

More advice needed please. I seem to have taken a step backwards.

My Romberg test with eyes shut, was a 0 count before falling, in Jan. It had gone up to a count of 50 plus, now it is down to 7.

The 'glove and sock' (I never had glove) is back and I have also started wobbling, walking into walls again, and don't feel too good, but not as bad as in Jan.

I had an op. for Frontal Sinus Mucocele four weeks ago (no nitrous oxide, and came through it well) and have had a chest infection since for which I was given Amoxicillin and Prednisone. I stopped the Prednisone after a day and a half as I was feeling ill, but finished the antibiotic.

I am having a B12 inj. once a week, but in the last two weeks have resorted to sublinguals as well, at first Jarrows 5000 then Solgar methylcob. 5000. I also take a multi vitamin (folic acid 200ug)

Any ideas why I feel rotten now and what to try next.

4 Replies


Just wondered if your folate and iron levels are good.

Have you ever been tested for diabetes?

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I find that having an infection seems to knock me out B12 wise - may be that the B12 is going into the processes that are dealing with the infection so not as available for other things ... or it may just be part of what an infection does. Depending on where the infection was it could possibly affect your balance through a knock-on on your inner ear.

I have a pulse-oximeter that I use periodically to check my blood oxygen levels - and although there isn't a real problem until they start dipping into the low 90s I know I will feel pretty rotten if my levels have dipped to 95/96 - like my brain no longer interprets signals properly.

It might be worth seeing if you taking another form of B12 - ie not methyl - helps - as people react differently to methyl.

To be honest I think the most sensible thing would be to go back to the GP and see what they say about the dizziness and balance problems

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Thanks for your answers.

Diabetes was tested and ok said GP. Iron was not as high as some people would like.

I wondered about trying another form of B12 but don't know what - please suggest something.

(My NHS GP''s are - - - B12 103 < 180 is not very low. 5 loading inj. then retest - B12 343 you are now normal, retest in 6 months, and have a stick for your neuro symptoms. I took him a copy of the BCSH and showed him the part about B12 D with neuro symptoms - he asked to borrow it "I will get back to you" that was 5 months ago.) The retest comes up at the end of October - a waste of time, but is there any other test that would help?

I go to a private GP for my weekly inj. he knows a lot more than NHS ones and arranged to meet Martyn Hooper. He will help if I can suggest anything.


Hi Beginner1.

'Iron not as high as some people would like'? Did your GP say this? If he did, disgraceful? Do you know what your serum iron and serum ferritin results were. Did he do an iron transferrin test? Did he offer iron supplements? Iron bumping along the bottom of the range is not good for people with B12 deficiency!

When my serum iron was 10 and serum ferritin 14, I felt very ill indeed and most of my B12 symptoms were exacerbated!

I've come to realise (with the help,of everyone here) that taking the right co-factors makes a big difference to how I feel.

So, magnesium, potassium, iron, folate, calcium, vitamin D, B vitamins and all minerals (esp. Zinc), etc. are all important (and probably some I forget)....too low or too high and you may well feel worse. Can you get your GP to check your levels?

If you have an absorption problem, then although some are not directly involved with B12 uptake, low levels can make you feel ill (for instance, low calcium can cause pins and needles, muscle and joint pain etc).

So, if you feel that your B12 has stopped working (I did), then a full vitamin and mineral screen a good idea. As is a full iron panel (not just ferritin).

Only suggestions which might (or might not 😱) help!

Hope you get some answers and start to feel much better soon x

P.s. Some people find that methyl folate works better for them than folate (in cases where there is a methylation problem).


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