b12 and folate +pins and needles

[wobblw]

Hello I have just joined hope you can help.Have severe pins and needles in foot and spread up to my knee.Joined a different medical practice on moving and had some blood tests on my request and am on 3 monthly B12.At previous practice I was on monthly injection as I have a family history of pernicious aenemia.Now taking folic acid 5mg daily as reading was abnormal on last blood test.Doctor seems to think pins and needles and numbness is "nothing much to worry about" but find it difficult to walk now.Worry because my mother was misdiagnosed with Parkinsons because she couldn't walk properly and she had pernicious aenemia. Any tips on self help happy with supplements herbals but this is worrying me

[Gambit62 Administrator]

are you a member of the PAS - if not would suggest that your join and then give them a ring for advice on how to educate your doctor as this would be a better strategy to try first rather than trying to go alone - that remains the back-up plan

pernicious-anaemia-society....

The pins and needles could be related to the folate deficiency - as symptoms are more or less the same - so sorting that out might help.

How long have you been on three monthly rather than monthly - and how does that relate to the development of the new symptoms?

Normal treatment - assuming you are UK based - would be 3 monthly maintenance doses with hydroxocobalamin

- do you know if you were being treated with cyanocobalamin at the previous practice? this is used monthly but isn't actually licenced for use in the UK anymore though it does still seem to be used in some areas.

There isn't any scientific evidence to support 3 monthly hydroxo over cyanocobalamin - just ingrained practice - and if you had neurological problems at the start then you should be on hydroxo 2 monthly rather than 3 monthly per BCSH and NICE guidelines.

[wobblw in reply to Gambit62]

Hello Gambit62,thanks for your help. Was told by new doctor do not have PA.Was treated with cyancobalamin for three years at previous practice but my notes were mislaid apparently when I moved.I was lucky to see a trainee Doctor at the new practice she organised blood tests and following these went on multiple injections over Christmas and then on three monthly regime.Neurological problems started about 2 months ago and have had a B12 injection in June after my bloods were taken.My present doctor put me on folate 5mg but neuropathy very bad in right leg and pins and needles now in toes of other foot.Can there be another cause?

[Gambit62 Administrator in reply to wobblw]

have you tried taking the folate - as above symptoms of folate deficiency are very similar to B12 deficiency and tend to come on very quickly so if the problem came on quite quickly that would fit with folate deficiency.

It is possible that three monthly on hydroxo doesn't work for you but I'd really recommend trying the folate for a while and see what that does just to rule out folate deficiency being the problem.

Have you been given a reason why 'you don't have PA' - if this is based on IFA coming back negative then that is an incorrect assumption as IFA gives false negative 40-60% of the time depending on the assay method.

PA is the most common cause of a non-dietary B12 deficiency. One of the other effects of PA is reducing stomach acidity which will lead to other mineral and vitamin deficiencies - which would include folate deficiency.

Dietary folate sources are particularly green leafy vegetables so if you have plenty of these in your diet then that shouldn't be the source of the deficiency which leaves you with an absorption problem.

There are lots of things that can cause neuropathy but back to quite sudden onset actually pointing to folate deficiency at the moment.

[wobblw in reply to Gambit62]

Hello and thankyou for your advice.Defiñitely taking the folate and added spinach and greens to my salad every day.I know my mother was very ill and eventually diagnosed with B12 deficiency had injections the rest of her life.Both my sisters and neice have the same problem so seems to be hereditary.Have found that getting exercise ie., walking gardening even skipping seems to ease the numbness and sitting at the computer not good so flexing your feet and moving about is good.Thanks for your advice and will let you know how things go.