Hi just come back from another visit to the GP - still no IFAB results however - good news he said he would start me on injections if I wanted - was concerned however because my serum b12 is only just low at 154ng ref (200ng - 900ng)!
He did however try to give me anti depressants because I am feeling so terrible and he thinks it's something else causing these problems.
It was only when I said that I was aware that were other tests that could be done that weren't being done and why weren't they? I said if it's in relation to cost then I have private med at work who will cover these costs. He originally said he would refer me to an endeocrinologist then back tracked and now wants to send me to a gastroenterologist - but I have no gastro symptoms!
Is this right or does he actually not know who to refer me to? Any recommendations and I will call him to confirm tomorrow.
My symptoms are extreme tiredness, dizziness, pins and needles in hands and feet (occasionally my lips too) feeling really weak and shakes and my hair is falling out quite a bit too.
Thanks
Carly
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Carlygeorge
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Has probably opted for Gastro on grounds that your B12 deficiency is an absorption problem so trying to look for possible causes for an absorption problem.
Haematologist would be the preference according to the NICE guidelines
However, also true that the guidelines are hopelessly focused on the anaemia aspects of B12 deficiency so that may not necessarily be the right way to go if anaemia isn't there
to be honest its more luck than judgement as to whether you get a specialist of any variety who really knows anything about B12.
Yeah I know but after he said you will only need one injection every 6 months and then we can see if things improve - I thought you know what - this is exactly what I have been reading here and I have no confidence in you and so I figured I may as well opt for a specialist and see if I stand a fighting chance!
It was only when I mentioned that I was a solicitor and have private med that he started listening to me and stopped trying to force feed me anti depressants.
Not once has he asked about my family history or my symptoms or anything he just doesn't think I am deficient because I am only just below their labs reference ranges. It is so frustrating!!
I live in surbiton in Surrey/greater london - if anyone lives near here and has a good GP or specialist that understands this then please do let me know.
I have an exam in 16 days that I am really struggling to study for but fingers crossed this won't be my first fail because of how I am feeling.
Go to ST Thomas and get the active B12 test, its not far from you, not far to walk from Water loo to ST Thomas Hospital, and the test costs only £18,-.
Ring them if you want to make sure, but I believe you can now just pay for it with out a need for a letter from GP. Results in 10 days with a complete explanation and contact info. They have the best persons/ experts on B12/PA, and your GP will have to be very dumb if he ignored any of their recommendations.
The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency.
Serum cobalamin remains the first line test currently, with additional second line plasma methylmalonic acid to help clarify uncertainties of underlying biochemical/functional deficiencies. Serum holotranscobalamin has the potential as a first line test, but an indeterminate ‘grey area’ may still exist. Plasma homocysteine may be helpful as a second line test, but is less specific than methylmalonic acid. The availability of these second-line tests is currently limited.
Definitive cut-off points to define clinical and subclinical deficiency states are not possible, given the variety of methodologies used and technical issues, and local reference ranges should be established.
In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.
Treatment of cobalamin deficiency is recommended in line with the British National Formulary. Oral therapy may be suitable and acceptable provided appropriate doses are taken and compliance is not an issue.
Serum folate offers equivalent diagnostic capability to red cell folate and is the first line test of choice to assess folate status"
Guidelines BNF (copy righted), similar as these, see:
•For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.
•Subsequently, 1 mg is usually given at intervals of three months.
•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]
If you now get a B12 injection from your GP, you will skewer results and that could mean you will not get the right diagnosis and treatment you may need for life, try to get the tests first before any medicating if at all possible.
I have a b12 deficiency was 184 (measured last month post injections and over the 2week period needed for accurate results and now 1800). I more recently found out I was vitamin D deficient. You should ask to get this checked as they often happen together I believe. Gastroenterologist is a good option as b12 absorbed through stomach so unless diet is ur problem likely to have something to do with this area. I recently had scope, I also have gastritis and was inconclusive for coeliac's. These are likely to be the kind of things they'll look for. I'm waiting to go back so not sure what next steps are yet.
They tested my Vit D I was 47pmol was told I was only just deficient and to buy supplements I asked for the reference ranges yesterday and he said red ranges are 75-200 pmol. Have been taking a vit D supplement that I bought from Boots
That doesn't make any sense to me. My vit D was 29. I was insufficient rather than deficient (I was told below 25 was deficient 25-50 was insufficient. I assume above 50 is in the normal range (although low end). I was prescribed Fultium D3 800 IU which is equivalent of 20mg Vit D3. I take it once a day. Not sure if this is the same dose you buy over the counter? Don't get tested until 6months later to see vit D levels again. (I've gone gluten free but don't do this as ur waiting for ur gastro appointment- you'll need gluten daily to test for Coeliac's and if u don't have any stomach symptoms yet -best to wait. But I've found it help my energy levels cutting it out (although having a bad week this week - not sure if it's cause I accidentally had gluten on Sunday). Once U've has all ur tests might be worth a try as I've heard it helps several auto immune disorders and was working for me until this week! x
Oh no I gave up Gluten last September as well as all processed foods and so have not eaten Gluten for ages - not because I have any symptoms or allergies but because it is so bad for you - should I start eating it again now?
That's a decision only you can make. All I know is that you have to have at least one meal with gluten in it everyday for at least 6weeks for the coeliac's test to work. It can take up to 2 years after stopping gluten for the body to fully recover (if, and a big if linked to coeliac's). If you've already stopped personally I wouldn't start again (as my test was inconclusive- and I've now completely cut it out but might be asked to start again - I don't think I will). The problem is they won't diagnose it as in Scotland we are intitled to prescription staple foods. (As you'll be aware gluten free substitutes are very expensive). As for ur vitamin D - according to google one tablet of yours is equivalent to 500iu. Mine is 800iu but my levels were lower so might be about right
Well I picked up my referral letter last night and I did query with GP as to whether it should be a Haematologist. The referral is for a haematologist of my choice in the end - just now need to decide who is the best one to see
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