Burning Feet Update

[eddi_c]

So I saw GP yesterday who told me that burning feet are a symptom of b12 deficiency.... really? fancy that.

He told me that it will take months if not longer for the problem to resolve and indicated the consultation was over. However, I quoted NICE guidelines to him to which he said that they follow BNF guidelines and proceeded to find and show me the relevant extract. Then he asked if I was a nurse (I'm not) so then wanted to know how I knew about NICE guidelines. My daughter-in-law works for NICE so I told him that, not that I got any information from her.

Upshot is, because I know of the problems everyone on here has gone through when asking for more injections, I backed off and have decided that I should go down the route of self injecting. As it is, I saw him making notes on my file. Now I am wondering if the surgery will see me as a trouble maker and possibly look at stopping jabs. Will have to cross that bridge if it happens.

It seems to me that Drs a century or more ago were far more enlightened than they are today.

[Secondchance]

Well bnf guidelines are alternate day injections until no further improvement for neurological symptoms so is that what was prescribed?

[eddi_c in reply to Secondchance]

Actually no Secondchance. He only showed me the highlighted extracts saying 5-6 loading doses followed by 3 monthly injections.

[Secondchance in reply to eddi_c]

That's only for anaemia

[Gambit62 Administrator in reply to eddi_c]

Standard initial therapy for patients

without neurological involvement is 1000 g intramuscularly (i.m.) three times a week

for two weeks. The BNF advises that patients presenting with neurological symptoms

should receive 1000 g i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological

symptoms by reviewing the need for continuation of alternative day therapy after three

weeks of treatment.

section C on p 8

bcshguidelines.com/document...

on maintenance it then says:

Maintenance treatment for patients presenting without neurological deficit is

with hydroxocobalamin 1000 g i.m. every three months. Those with initial

neurological deficit should receive hydroxocobalamin 1000 g i.m. every two months.

No further testing for cobalamin levels is required. Although there is little evidence that

more frequent dosing is harmful, specific objective studies demonstrating clinical

benefit are absent, and the GWG cannot make specific recommendations.

[eddi_c in reply to Gambit62]

Thank you for the information Gambit. I will be better prepared to stand my ground next time I see GP. Got to get tougher!

[Sleepybunny]

Hi,

You could check with your CCG (Clinical Commmisioning Group) in your area if they are following the recommendations of the updated BCSH guidelines on Cobalamin and Folate disorders.

[Polaris]

Extract from the BCSH guidelines:

" The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

Just in case you haven't seen it, this excellent film explains why it is essential to treat quickly and adequately as there is a short window of opportunity before neurological symptoms become irreversible; also why folic acid supplementation has masked anaemia and made diagnosis more difficult over the years

b12deficiency.info/films/

I wouldn't worry too much about trouble making - some surgeries are more interested in not being sued, running the surgery on money making expensive drugs and amassing points for their income from various diseases:

thecommissioningreview.com/...

I think I'm down as a non complier on their notes, having opted out of Care.data, refused flu and other injections, fought to keep extra thyroid medication and now self medicating with NDT and B12 !

[wedgewood]

You are lucky indeed to have a doctor who says that your numb feet are a result of B12 deficiency. I was diagnosed with Pernicious Anaemia( had to pay to go to private GP and blood test.). had a B12 serum level of 150, and was just told to go home and eat plenty of green leafy vegetables. The feet "didn't have to be caused by B12 deficiency" They were "ideopathic" No they didn't qualify as n"neurological"

[wedgewood in reply to wedgewood]

Accidently sent the post!!! I have had to resort to frequent self-injection with Methylcobalamin, and take a Vitamin B complex with Metafolin rather than folic acid Result---numbness gone,justleft with burning., which I can cope with. I hope that you get the treatment you need. Of course my doctor thinks that I'm one of the 'awkward squad' as I have told her that I self-inject.She says that B12 is toxic, but now I have seen that report from the Dutch National Health Council,which states that is not so.No case of toxicity in 60 years. You have had some good advice from Gambit 62 and Polaris. I wish you all the very best.

[eddi_c in reply to wedgewood]

I agree Wedgewood. I really appreciate all the advice and now feel much more confident about going back and standing my ground. I too was told about the toxicity of b12 which I knew to be rubbish and did say so at the time, diplomatically of course. I am shocked that the BNF guidelines are the same as NICE but GP led me to believe otherwise and that is definitely something I will address. I have also visited the b12d website where there are some useful draft letters and excellent references.

Thank you to everyone

[Ruby4000]

i did not know this! i told my dr a couple months ago that the soles of my feet kept burning

[Hidihi]

hi eddi, commiseration on ur experience with the 'experts' - a familiar one sadly. i wouldn't worry about 'comments' being put on ur notes, cos it's likely a comment not to fob u off as u know what ur talking about and have access to 'expert' advice. no doubt the have their own internal 'short hand' for that. so i'd say ur more likely to get 'special' attention. all good luck with getting it all sorted.

HH.