Can she ask GP to follow nice guidelines?

[SilverTapz]

Not me, my friend. According to NICE guidelines, her b12 levels are indeterminate and she should have an MMA test to determine whether she has a functional deficiency. She takes a multivitamin with b12 every day which also suggests her b12 should be higher. She is also mixed race and nice guidelines clearly suggest that anyone of any black heritage might have higher thresholds. She has symptoms of b12 deficiency, buzzing and vibrating in feet, one sided muscle weakness, fatigue, brain fog. GP is saying her levels are fine, NICE guidelines say different. Is she just at the mercy of her GP and does she just have to accept them saying no? She's currently sat here with me in tears.

Active B12: 57.0 pmol/L
(Reference: >37.5 pmol/L; Ideal: >70 pmol/L; No upper limit specified)

Total Vitamin B12: 190 pmol/L
(Reference: 145–569 pmol/L)

Folate (Serum): 3.9 nmol/L
(Reference: >7.0 nmol/L)

These are her levels if it helps. Her folate is very low and she's unsure why and I know her to be incredibly healthy with lots of green veg, meat etc.

My GP didn’t follow NICE guidelines when I was diagnosed with a B12 deficiency, not that I knew that at the time. I was naive and thought they knew best. They definitely didn’t follow NICE guidelines when they stopped my treatment. I now have been left with irreversible symptoms, even though they reinstated my treatment 18 months later.

I wish I had known more at the time. I give myself B12 injections now, if I had continued with the three monthly injections the GP prescribed I would not be functioning at all.

B12 and folate work closely together, B12 is needed for folate to work.

A level of 190 pmol/L is very low indeed.

Feel free to message me if you want some links for resources etc.

Her GP has told her 190 is 'well within range'

Look at local guidelines/protocols.

How would we find this?

The NHS are rubbish with treating B12 deficiency and some nhs trusts are worse than others. Other countries are more knowledgable and proactive.

personally I think she should write to the practice manager and explain how unhappy she is with the GP care, particularly in light of the brain fog while taking supplements. Quote the NICE guidelines. https://www.nice.org.uk/guidance/ng239/chapter/recommendations

Failing that look at local clinics/nurses which provide injections privately. They can cost about £30 per injection. She could also ask for tips about self injecting and buy B12 directly from Germany. Lots of people do it what with the NHS being so rubbish.

If she is supplementing with oral B12 but she can't absorb it her blood results will be skewed and she will still feel absolutely grotty. People who can't absorb B12 need injections. B12 deficiency is appallingly treated in this country. She could buy in her own supplies and self inject.

Also she’s better off taking high strength b12 tablets, the sublingual variety.

This is a good Facebook group with a B12 protocol and links to where to buy all the supplies.

Has she gone to them with the guidelines printed out and said “this says X, can you explain why this doesn’t apply to me?” Because there might maybe be a medical reason the GP is aware of (I don’t know, I’m not medically trained) and if not, maybe they’ll rethink.

Absorption issues can be due to vegetarian diet or gluten intolerance or other issues

She brought it up on her phone and her GP says they're within the normal limit. Didn't seem to care apparently about the fact that it's borderline and she's also half black which can affect thresholds.

She can also order 5mg folic acid online to bring up her folate levels. The OTC ones are only 400mcg. Folic acid is a cofactor of B12.

NHS Director here, responsible for standards including NICE. Your friend has a right under the NHS Constition to access high quality care. NICE tests clinical effectiveness and cost effectiveness and recommends accordingly.

Your needs to take the guideline to the GP and go through how it applies to her. The GP may not be aware - theres lots of NICE guidances. Unless she has contraindications she has a right to be prescribed that treatment so long as its funded in local area. B12 should be as its not a specialist drug.

Whilst NICE is a guide it must be followed unless there's good reason not to. The Care Quality Commission (CQC) Regulations Handbook under effective care states how best pract8ce must be applied and adhered to. CQC are the healthcare regulator and licence the practice.

Hope this helps

Thank you so much this is really helpful!

I'm so sorry to piggy back.
My level was sub 100 and I felt like I was dying tbh. I can't tolerate needles so opted for 5000mg which my bloods then skyrocketed on to 2000, and gp said stop taking. Does thos mean I potentially should not have stop as feeling rubbish again, and after starting the tablets before I plateaued and felt not that effective fairly quickly.
Can anyone recommend anything other than injections more effective than tablets or should I just keep taking?

It would be useful to come of the B12 supplement and pursue proper investigation with the GP.

B12 has a half life of approximately 6 days so will take her about 4-6 wks for supplements to be out of her system for a more reflective blood test.

Sounds like you are a really supportive friend and she’s lucky to have you.

Then have her see the GP for retesting and armed with the latest literature on the reference ranges being for a Caucasian population whilst as you have stated those of black heritage have higher B12 levels. Therefore her deficiency & MMA testing triggers would be skewed from what the GP is suggesting.

Her symptoms could be indicative of other issue such as thyroid - has that been tested?

Also a lot of long COVID/ Post viral symptoms presenting as B12 or folate deficiency.
COVID not really being mentioned any more, but something similar doing the rounds and really impacting people for a prolonged period.
My sister and her husband are both otherwise well and had a bad flu in February. Still both completely exhausted and random nervous system issues.