I have tested positive for Intrinsic Factor, with B12 at so called normal 348, G.P `trialled` 1 B12 jab with expected zero effect on symptoms ( physical & neurological ).
Went back to G.P who asked what I wanted him to do - I stated request for loading doses, G.P said this practice gives 5 weekly jabs over 5 weeks to load ?!
I asked about Homocysteine and it`s relation to Heart Disease ( have had 3 heart attacks ,needing angioplasty and total of 5 stents last 7 years, even tough cholesterol controlled with statins ) , and went armed with downloads from Nice, NHS Direct, B12 .org., P.A S., etc., but he showed no interest in my info.
I have 1 more `loading ` dose next week, then have a blood test to re-check for I.F.A and B12 the following week.
I have since written a letter enclosing my downloads re correct treatment protocols, politely asking why my Surgery does not follow said guidlines ( no reply yet ).
Can anyone advise if I can get my Homocysteine checked via NHS, or how to get privately ( and probable cost ).
I did ask my G.P if my history of Heart Disease could be related to my long standing P.A. symptoms and recent positive test, and he said possibly.
Many thanks,
Barry
age 61, living in U.K
Written by
Barry1955
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Hi, sorry to read you're having such a battle with your health and GP! I tried to request a homocysteine and MMA test from my GP last year and was told I wasn't ill enough, so had no luck there! I managed to get the MMA test via St Thomas hospital after having an active b12 test. On the form it said a homocysteine test is available from them. At the time it cost £46 but did involve having the blood spun first which I think would need doing at a hospital prior to posting? Having said this the active b12 test was £30 then, and is now £90 as it doesn't require a dr referral now, so cannot guarantee the price is still the same? I recently contacted St Thomas as I need an MMA retest and they suggested that homocysteine should be available at local hospitals, but MMA is more difficult. I didn't go ahead with the homocysteine simply because it was the more difficult of the two and the active b12 /MMA proved I have a functional b12 deficiency, so very glad I persevered! I would like to have that test too though, so will look into it and it seems you would definitely benefit knowing. Hope you manage to sort it out, keep persevering!
Hi Barry1955. Just a couple of quick comments...you have neurological symptoms so should be on the neurological regime of treatment (6 x loading doses on alternate days and then 1mg of Hydroxocobalamin every other day until no further improvement (perhaps for many months).
Your GP may not have heard of this...thll him to,look in the BNF - he'll have a copy on his desk...it's the second item down so may have to read further than usual! If he says...but you don't have pernicious anaemia (he obviously does not believe your positive IF test)...tell him...moot point...the treatment for PA and B12 deficiency is the same....B12 injections.
IF test - if the result is positive you definately have PA. If it's negative there's a 50% chance it's wrong - you could still have PA.
Re-check of B12 levels following loading doses. All the guidelines say that no further testing is necssary once treatment has commenced. Your levels should be high - perhaps very high - this is where you want them to be. High levels should not be used as a reason to stop your B12 injections. (I suspect you probably know this but thought I's say it, just in case 😀).
Homocysteine - offered by some NHS areas - my GP requested mine. But...the sample has to be in the labs and tested within two hours - I had to go to the main hospital where the labs are located so that the could take it straight down for analysis.
MMA - also ordered through GP - though he'd never heard of it and had to ring the neurology team to ask about - on my insistence.
Think homocysteine is quite expensive done privately - try Blue Horizon - think they do it.
Have you had your folat levels tested - B12 and folate work together so,if folate is low, your your body will not be able to utilise the B12 properly. Check the results yourself - GP's think bottom of the range is good enough it's not - need to be in the top third of the reference range.
Also, people with B12 deficiency often have low ferritin - has this been checks. Again, bottom of the reference range not,good enough.
Finally, well done for persevering. B12 is low in the range and as you have symptoms of deficiency, you should be treated - immediately, because of,your neurological symptoms. All the guidelines state this - as you know.
Your GP's a bit of a numpty 😖.
B12 deficiency is quite complicated soif you have trouble getting more treatment or you want any more help or advice, please post again. Lots of people here to pop in and help.
My folate was 5.5 ug/L, and ferritin 125 ug/L, not sure what good/bad levels are.
Still no reply to my letter to my G.P., and now can`t even book an appointment into February ( for follow up to IFA / B12 Re-test ). So much for Governments targets !
Hi Barry. A good place for ferritin and folate levels to be is in the top third of the reference range.
Please keep pushing for treatment - your neurological symptoms mean that you should be treated (as per my reply above).
I know it's not easy to challenge GP's, especially when you're feeling so ill, but you have a right to be treated in accordance with current guidelines - and you should be afforded the opportunity to become and keep well.
Has your GP seen a copy of BSH Cobalamin and Folate Guidelines?
b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 or put "cobalamin and folate guidelines" in search box.
Link to flowchart in BSH Cobalamin guidelines. Makes it clear that someone with positive result in IFA test should be diagnosed with PA and have lifelong B12 treatment.
"then have a blood test to re-check for I.F.A and B12 the following week."
I'm surprised the GP wants to re-check IFA and B12. Pretty sure there is something in BSH Cobalamin guidelines that there is no need to re-check B12 levels once B12 treatment has started.
Have you looked at the summary of B12 documents fbirder compiled? I have found this useful and take a copy with me to drs appts. Link to summary in third pinned post (last link in list).
I printed out and posted with a letter to G.P. guidelines from Nice/NHS Direct/BSH/BNF/B12d.org/PAS highlighting protocols for correct treatment ( no reply )
I am wondering if an e-mail to Angela Rippon at Rip Off Britain might get their interest ; we are consumers after all, and many of us are not getting proper `goods`.
My experience of homocysteine: I was tested for MMA and homocysteine at an nhs hospital in gloucestershire (so samples could go straight on ice) when my b12 was considered borderline (147/158). My homocysteine was high (17 i think) and mma fine. Haematologist said by letter no harm in b12 injections just in case. I moved to Scotland and had three attempts at a blood test in a GP surgery for homocysteine after I had b12 injections. The 1st got lost, 2nd didn't make it to hosp within the 2 hours, 3rd was done at docs and I had to drive it to the hospital and deliver it to the lab myself, took 1.5 hours not on ice. Result came back fine (10). Given the circumstances of the sample delivery I don't trust the result. This was a few years ago and there is a history of stroke and clots in the family so I'm keen to get this re-checked. If I cant get it done on NHS I'll need to try privately so will be keen to see where you manage to get this done. I have a family member who was put on b12 after a stroke (PA was then tested then and ID'd) and sure I've read about a link before. Hope you managed to get something sorted
Don`t know when I will see G.P next, can`t get an appointment to see him even into February !
Got last `loading ` jab on Weds with Nurse ( that`s 5 in 5 weeks ). Started to see a little improvement after 3rd jab, then had a massive depression hit me last week for about 4 days ( nurse said jabs do not cause that sort of side effect ), and have now started to feel uptight and irritable since yesterday. Wife says I need anti-depressants ! She still thinks I`m a Hypochondriac . Thank God for finding this forum.
I feel for you Barry. I couldn't even get injections when I had a b12 level of 115. I was very ill. To answer your question, you can get the homocysteine test on the NHS but generally it has to be authorised by a specialist I believe?A neurologist ordered mine and the mma. If you have already started injections it will probably affect your results. An admin can maybe advise on that?
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