Advice re symptoms : Morning, 18 months... - Pernicious Anaemi...

Pernicious Anaemia Society

25,507 members17,781 posts

Advice re symptoms

Lulusymes profile image

Morning, 18 months ago I had a lot of blood tests as was suffering from fatigue and felt dreadful. The blood tests showed I had vitamin d deficiency. I was given a vitamin d loading dose for a month to raise my levels. I then developed pain in my knees almost overnight. This pain now affects my knees, toes, fingers, hips and back. I've been seen by a rheumatologist as it was suspected I had psoriatic arthritis. They ruled this out and discharged me with osteoarthritis and was told to lose weight and use pain relief. The pain has got so bad I've been signed off work. I found out at the weekend my grandma had pernicious anaemia so i mentioned this to my GP who said "your bloods didn't show anything". Has anyone else had joint pain? I've looked at the list of symptoms and sometimes I have had some of them but my main issue is the joint pain. Feel utterly fed up and feel undiagnosed with something. I've gone from being a busy mum, working full time and never stopping to being unable to do anything more than is essential.

Thank you

5 Replies

I’ve had joint pain for 40 years. Long before my B12 deficiency.

My doctor advised me to lose weight. But was lost for words when I asked... “I can see how that might help my knees, but I really don’t think it can explain the pain in my hands”.

It does sound like osteoarthritis rather than B12.

Lulusymes profile image
Lulusymes in reply to fbirder

Thank you. I had exactly the same my hands and fingers aren't fat!!!

Gambit62 profile image

both osteoporosis and osteoarthritis are potential results of a long term B12 deficiency.

Do you know if you have ever had your B12 levels measured? Your GP may just be going on your bloods showing no signs of macrocytic anaemias (red blood cells larger and rounder than normal) - a common symptom of B12 deficiency and where the anaemia comes from in pernicious anaemia - but 25% of people presenting with B12 deficiency don't actually have anaemia (different symptoms come to the fore earlier than others in different people).

I get indescribable pains in my ankles at times that seem to be vitamin related - B12 helps but actually switching from folic acid to a methylated form has also helped - pain occurs particularly when I stand and start walking. I can't say I've noticed anything in my wrists though ... and problems I have in my hands are aleviated by changing wrist position so more likely to be related to carpal tunnel.

I also have/had tarsal tunnel but that is almost certainly B12 related - arches are much better these day and I can generally manage without using any arch supports - something I needed for more than a decade before I was diagnosed as having problems with B12

Lulusymes profile image
Lulusymes in reply to Gambit62

The first letter from the hospital shows my blood results:-

"VITAMIN B12 256.8ng/L 180-900

(Low B12 < 145ng/L, Equivocal B12 145-180ng/L) On rare occasions, high titre intrinsic factor antibody in pernicious anaemia may interefere with the assay of serum vit B12 and give aspurious normal result. Please discuss with laboratory if clinical and haematological features strongly suggest PA and a normal serum B12 is reported".

At the time when I first saw the rheumatologist I had no idea that there was PA in my family history. I'll mention it when I see the rheumatologist this week. My GP was very dismissive when I told her.

Thank you so much for your reply.

you might see if it is a vitamin D induced magnesium deficiency.

i hope this helps and wish you good health.

You may also like...