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Pernicious Anaemia Society
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Knee pain

I have had b12d since at least 2014 and folate but doctor didn't pick it up, since about 2 years I've suffered with what used to be occasional awful burning pain in right knee, which would always come on during the night and wake me, then it would pass, but as time's gone by the pain is becoming regular, day and night, last 6 months has been particularly bad, they never have any answers for me, and not even sent me for a mri. Could it be due to my deficiencies I wonder?

2 Replies

Hello Gwenroberts, I have been looking back at your posts and wonder if it would be useful to have an iodine deficiency test. Iodine deficiency is certainly implicated in hair loss, along with copper and zinc, and is also implicated in weight loss (and gain) along with phosphorous and sodium. Iodine deficiency can also cause muscle aches, pains, cramps and muscle weakness. Am I assuming correctly that you are not being treated for either B12/folate deficiency or an underactive thyroid?

Copper is needed to utilize iodine, so I assume if you have an adequate iodine intake, a deficiency in copper may be hindering its utilization. We only need small amounts of copper but Wiki suggests:- Copper deficiency can manifest in parallel with vitamin B12 and other nutritional deficiencies.

I think its worth checking, even if just to rule it out.



Just wondered if you have had Vitamin D levels checked?



"had b12d since at least 2014 and folate but doctor didn't pick it up"

Are you receiving treatment for your B12 deficiency now? For your folate deficiency?

If yes. what type and level of treatment are you getting? Some people on the forum struggle to get correct levels of treatment.

I certainly had a lot of joint pain and discomfort before I started B12 treatment.

B12 Deficiency Symptoms Lists




Links about UK B12 treatment

BNF British National Formulary


BSH Cobalamin and Folate Guidelines



Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test and start initial b12 treatment. This applies whether B12 is low or within range.

In UK, people with b12 deficiency with neurological symptoms are supposed to get more intensive treatment.

Have you had an IFA test (Intrinsic factor Antibody)? This can help to diagnose PA (Pernicious Anaemia) but test is not always reliable and it is still possible to have PA even if IFA test result is negative (called Antibody Negative Pernicious Anaemia).

Have you had recent tests for B12, folate, ferritin, full blood count (FBC)?

B12 blood tests





Link about what to do next if B12 deficiency is suspected


B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of PAS. I gave a copy of this book to my GPs.

Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies

UK B12 websites



PAS tel no +44 (0)1656 769 717


B12 Deficiency Info




Other B12 info

1) Pinned posts on this forum. I found fbirder 's summary of B12 documents helpful. Link to summary in third pinned post.

2) BMJ B12 article


Who's at risk of B12 deficiency?




Unhappy with treatment?

Letters to Gps about b12 deficiency




HDA patient care trust


UK charity that offers free second opinions on medical diagnoses and treatment

I am not medically trained, just someone who has struggled to get a diagnosis.

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