After being diagnosed P.A and having my loading doses, my symptoms are no better, the dizziness is unbearable and I keep dropping things with the pins and needles on my hands.
I’ve been and seen my doctor again this morning as it’s getting dangerous nearly falling down the stairs . He has referred me to an audiologist to check my hearing before starting neurological tests and wants me to have repeat bloods on Thursday morning .
My heart rate at home was 55 at resting and shoots upto 105 on standing up but it was ‘ok’ at the surgery .
I’m honestly fed up of feeling like I’m going to hit the floor at any given moment!
Am I wrong in thinking they shouldn’t repeat bloods for P.A? And also denied anymore b12 until September which will be 3 monthly.
thank you for listening to me.
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Sea_cells
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My ferritin levels were 121ug/l lab says 6.00-81.00ug/l which was tested 4 weeks ago, doctor has said he doesn’t see the point in repeating my full blood count just wants b12 & folate retesting.
We shall see what Thursday brings I suppose go from there.
Neuro symptoms require continued every other day injections. You might try writing a letter to your doctor b12deficiency.info/writing-... see point 1.
Failing that, self injection is a last resort.
You could get lucky & b12 levels could be low. If they are in range or high they'll likely say you're fine, unfortunately. But correct, b12 levels need not be retested. Go by symptoms.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
I prefer to put queries about treatment/diagnosis into a letter as I feel it's harder for the GP to ignore. Always keep a copy.
It's vital to get adequate treatment. Inadequate treatment may increase the risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected.
If your GP is reluctant to give adequate treatment, it may be worth discussing the risk of permanent neuro damage with them.
Next article may be a good one to pass to them.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I urge UK forum members to find out what is in the local b12 deficiency guidelines used by their ICB (Integrated Care Board) in England and Health Board in Wales/Scotland (not sure about Northern Ireland).
If you can't find them online or by searching forum threads then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some local B12 deficiency guidelines are not helpful. See blog post below.
2)Club B12 is a group of researchers, doctors and other interested people who are looking into B12. They have regular zoom meetings and a conference in UK later this year.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
I'm not medically trained just someone who struggled for years with unrecognised and untreated B12 deficiency.
Some UK forum members turn to treating themselves if NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 eg 1000mcg or higher but these don't work for some people and some as a last resort try self injection (SI).
Hi Sea cells, your doc needs to look up the NICE guidelines for PA it states quite clearly that loading doses should continue until symptoms improve and then injections should be every 8 wks.
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