Doctors just phoned

[pet-lamb]

I was on my way home when the doctors phoned I'd been waiting since the beginning of May for a referral to a neurologist because of pains like a stabbing knife in my head and the feeling of drawing pulsing in right and sometimes left eyes. I'd see the optometrists specialist in December who had ask me to get the GP to refer me .well I today I got a call from the doctors trying to get me to drop the referral in favour of tables for neuralgia which is not proven .I refused and asked if any of the pains I have been experiencing which include other shooting pains in my stomach aching tingling heavy hot legs burning tongue breathless and other symptoms could be anything to do with my b12 as at the beginning of May was 152range 150-1000. But had jumped at beginning of June to over 400 but under 500 same range no treatment .he said no he didn't see a link and thought that the bloods people (sorry can't remember titles) wouldn't either.I went on to explain to him that I had neurological damage caused by the low b12 in May and didn't know how long it had been like that and that someone of my age or older with autoimmune thyroiditis should be treated for low B12 which it is thought should be around 1000 or at least over 500 .and he asked where I was getting my information I told him health unlocked the BNF and N.IC.E Guidelines which I knew every surgery has access to these protocols. Hope I was right

[Nanaedake]

Each area has it's own guidelines about B12 levels so NICE would not have a laboratory guidlines range. It's the view of people with thyroid conditions that B12 needs to be high in range or higher in order to feel well based on their experience but it isn't a NICE guideline as far as I'm aware. The British Commission for Standards in Haematology have issued guidelines for the diagnosis and treatement of Cobalamin and Folate Disorders, June 2014. The NHS is not required to treat B12 unless it's below range. However, you will read in the document produced by the BCSH that there is no single conclusive test for B12 deficiency. It's complicated and not as straightforward as we would all like it to be. You could be below range and feel fine or within range and be deficient and ill. Take your GP a copy of the guidelines and ask his view. Ask him, if your problems are not caused by B12 deficiency then what does he think they could be? Have you had a full blood count done? Do you know how well your kidneys, heart and liver are functioning? Have you tried going gluten free? There could be a number of reasons for your symptoms. Have you got copies of all your blood test results?

[pet-lamb in reply to Nanaedake]

Thank you nanaedake I do eat gluten free as I was advised by the consultant after tests for celiac disease where negative. But I remained symptomatic .I have my blood test results but not able at the moment to get them but I had a full blood count done and kidneys heart and liver are ok. I came home and read up on nice guidelines but as you say they don't support my beliefs on the subject of low or deficient b12 I did know some of the information as regards to no single conclusive tests across laboratories. my doctors think that I might have neuralgia despite the other symptoms some of which are stabbing pains in stomach and head at different times. poor gait sort of off balance light headed irritability burning tongue poor memory stiffness aches and pains legs feel like led walking feels like I'm fighting my way through sea water mouth roof and gums often feel sore fingers and toes sometimes go into cramps noise intolerant hearing loss occasionally tinnitus when my levels where at 152 I craved chocolate and coffee and don't know. I frequently fall asleep during the day and am still tired at night.

[Auntyp62 in reply to pet-lamb]

I was given b12 injections for untreatable neuralgia and it made a lot of difference for about a year then all other symptoms you describe came back, especially the exhaustion. Now I am on 1000 b12 sublingual and b9. B6 and b2 daily and feel better than I have in years and symptoms are no where near as bad as they were. My original b12 when injections were given was 252

[pet-lamb in reply to Auntyp62]

Thank you auntyp62 it's interesting that you're symptoms where the same as mine I'm convinced it's not any form of neuralgia my b12 at the beginning of May was 152 range 150_1000 but after taking 1000 mg of vitamin c twice just days before my second blood test in June because of a long running viral infection it shot up .I have no idea if it remains at that level and would pay for a private test but don't know if the vitamin c is still in my body or my b12 remains at the higher level now especially as prior to may tests I had for years been taking Centrum multi vitamins which contain b12 thiamine folate Ferritin etc.I hear you have to leave 5 months free after stopping them before you 're test.

[Auntyp62 in reply to pet-lamb]

I have been taking very high doses as advise, I don't think centrium or any other multi vitamin is strong enough to make much difference.....when I told my endo what I wanted to do he said ..do it you will only pee the excess so won't overdose for years....so glad I did as multivitamins made no difference to me. My b12 must be very high but if I feel good and no neuralgia it is worth it