Help needed - new blood results back

[chloe2124]

Please please help me. Had blood results back today. B12 is now 225 (180-910) Background:

21st March - go to dr with numbness in foot

4th April - blood test results are b12 is 241 (200-1110), folate 3.6 (5.5-24)

5th April - start taking 5mg folic acid

25th April - feel absolutely exhausted, can't work or get out of bed

26th April - blood test results are b12 is 214 (180-910) and folate is 24 (same range as before)

27th April - started taking multi vitamins including b12 and folate. Could only manage for 2 weeks as started feeling really tired again so stopped them

Today - blood test results are b12 is 225 (180-910), folate is11.25 (same range as before), vitamin D is 50 (50-100), magnesium is 0.85 (0.7-1), GPC is normal

Main symptoms are vibrating/tingling hands and feet and fatigue. The tingling is get worse by the day

I'm epileptic and my meds are known to reduce folate. I have an appointment with my specalist nurse in the neurology hospital on Thursday so will mention all this to her. I have also bought a private active b12 test which should come tomorrow.

What do I do next if the nurse won't help? I'm driving myself insane with worry and frustration

[Gambit62 Administrator]

Think some epileptic medications are also known to interfere with B12 so you may be getting the double whammy.

You could try making sure that your nurse is aware that the BCSH guidelines are not to treat a folate deficiency on its own if there is a possibility that there is also a B12 deficiency because of the risk of permanent nerve damage. Also make sure they are aware of the UKNEQAS alert on the importance of looking at symptoms as well as the test results.

bcshguidelines.com/document...

ukneqas-haematinics.org.uk/...

Also, look at a checklist of B12 deficiency symptoms and tick off all that apply - even if they could be attributed to another condition

pernicious-anaemia-society....

Generally a B12 deficiency arises because something happens that affects your ability to absorb B12 - there are a number of possibilities including

a) PA in its true sense - an autoimmune response that attacks either parietal cells or intrinsic factor which are two key elements to absorbing B12

b) lowering stomach acidity - symptoms overlap with high stomach acidity so it is frequently treated with PPIs which just make things worse

c) drug interactions such as PPIs, metformin, NSAIDs, some drugs used to treat epilepsy and the list goes on

d) genetic abnormalities affecting the ileum

If you have an absorption problem then you would need to be taking really high doses of B12 for enough to be getting through (1% of B12 is absorbed outside the ileum so flooding the gut with high levels of B12 can work, in theory, but doesn't seem to work for everyone).

Unfortunately there is no guarantee that the nurse you speak to will have any awareness of B12 but here's hoping that they do.

... and you might want to think about joining the PAS so you can access support from them just in case the nurse proves to be a bit of a chocolate tea-pot.

Vit D is right at the bottom - there is a significant overlap in symptoms so that's probably something else to bear in mind.

[Sleepybunny]

fbirder has a very useful summary of mainly UK B12 documents. If you search for his posts you should be able to find a link.

Another UK b12 article

bmj.com/content/349/bmj.g5226

UK b12 websites

b12deficiency.info/

b12d.org

PAS

The PAS are helpful and sympathetic. Lifetime membership is currently £20 but costs are increasing soon. The PAS can sometimes intervene on behalf of members.

pernicious-anaemia-society....

01656 769 717

martynhooper.com/

B12 books

"Could It Be b12" by Sally Pacholok and JJ. Stuart

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper...up to date with current UK B12 guidelines.

Symptoms

pernicious-anaemia-society....

See Symptoms Checklist

b12deficiency.info/signs-an...

In the UK people with b12 deficiency with neuro symptoms are supposed to get extended loading doses and maintenance injections at shorter intervals.

UK B12 treatment

1) page 8 BCSH Cobalamin and Folate guidelines

2)patient.info/doctor/pernici...

see Management section in above link for treatment info based on BNF (British national formulary)

[Boozybird]

Hi C, I would just add that there is a view that methyl folate is more absorbable than folic acid so this could be a factor? Anyway, let us know how you get on with the nurse.. 👍🏼😜🍀

[fbirder in reply to Boozybird]

Folic acid is a lot more absorbable than methylfolate. The bioavailability of methylfolate is anything from 50% to 80% that of folic acid.

[chloe2124]

Just come out. She said had my blood results been ok ie no previous folate deficiency etc then she would refer me back to the neurologist but because I have had the folate deficiency and b12 is low the she will recommend a referral to haematology to my GP. What will they do though? I'm really worried!

[Boozybird in reply to chloe2124]

Hi C,

at least you are on a path now - try not to worry - hopefully the neuro will help you. Best wishes