Hi Everyone, This is my first post so your guidance welomed.
Saw GP with increasingly worse neurological symptoms of hip/leg and hand numbness (blood test 150 Dec 17 not fed back to me; 150 Aug 18) and started 6 loading doses Aug followed by a further 6 (all twice a week) with dramatic improvement though horrendous headaches and awful 'nerve spots' just below hips further weekly doses then two weekly doses offered but 'crashed' after 7 days during a 10 day gap (hols). Dr said she would 'speak to neurologist' and have had a call from surgery to go in for a Methylmalonic Acid test on guidance from neurologist to GP.
I'm hypothyroid, mother and brother with pernicious anemia, daughter is coeliac, brother has dementia symptoms.
My concern is that a MMA test will prove negative for b12/PA if I have had these B12 injections. I feel 'normal' post injection but symptoms come back in a week. It feels like this is being done to curtail injections as GP questions my need for them which feels oh so scary when the 'crash' I have experienced may loom again. Like so many I just want to feel normal and functional. I would have no issue SI if I could just understand what my needs are and bridge the gap between NHS provision and wellness. What time period should be left between B12 injections and a MMA test to give 'true' results and is a MMA test meaningful in my situation? Any thoughts?
Written by
brionybritbird
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If you suspect PA , probably worth joining and talking to PAS. PAS can sometimes intervene directly on behalf of PAS members and at very least can pass on useful info.
Recommended UK B12 treatment for non-dietary B12 deficiency without neuro symptoms is.....
6 B12 loading jabs followed by a jab every 3 months
Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms (any cause of B12 deficiency) is....
A B12 loading jab every other day for as long as symptoms continue to get better (could mean every other day jabs for weeks even months if improvement continues) then a jab every 2 months
This treatment info can be found in BNF, BSH and NICE CKS links below.
If you're based in UK, I suggest reading following documents. Flowchart below outlines when PA and Antibody Negative PA can be diagnosed in UK.
NICE CKS link above recommends that GPs should seek advice from a haematologist for patients with B12 deficiency WITH neuro symptoms. If you're in UK, has GP done this?
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Family History
With family history of PA, have you had an Intrinsic Factor Antibody (IFA) test?
IFA test is not always reliable and it's still possible to have PA even if IFA result is negative/normal range. I have read that IFA result can also give false positives if taken close to a B12 injection/supplements
With family history of Coeliac disease, have you been tested for Coeliac disease? If you're in UK, guidelines below recommend that first degree relatives of sufferers are tested. UK guidelines also suggest anyone with unexplained B12, folate or iron deficiencies should be tested.
was to always get copies of all blood test results.
Some forum members get a complete set of medical records. I learnt from experience that when told by GP/receptionist over phone everything was normal, it wasn't always "normal"on the copies.
Untreated or under treated B12 deficiency can lead to further deterioration including the possibility of permanent neuro damage. Is your GP aware of the risk of spinal damage if B12 deficiency is under treated?
Thanks for that. The Dr has not done an IF test, I am negative for coeliac.
Having looked at that first Dutch article it states:
'In case of a B12 deficiency treatment will rather quickly lower MMA levels. Testing sometime after starting treatment, for instance after one or two months, may serve as a confirmation of the B12 deficiency diagnosis. This can also be done when people before treatment have a MMA value which is not distinctly above reference values.'
So it may or may not confirm a diagnosis if treatment with B12 has begun?
I have devoured many of the resources mentioned but I will keep going, and join PAS.
Were you told this or did you see the actual results? These days I don't trust what I am told about results unless I'm holding copies in my hand.
Which Coeliac tests did you have?
NICE guidelines on Coeliac disease specify two tests....
1) tTG IgA
2) Total IgA
The second test, Total IgA is not always done in UK even though UK guidelines recommend it. Total IgA test checks which people have IgA deficiency.
People with IgA deficiency cannot make the antibodies to gluten that the tTG IgA test checks for and will have negative results in tTG IgA test even if they are Coeliac. People with IgA deficiency need other tests for Coeliac disease. See NICE guidelines or link below.
Consultant gastroentoroligist advised on coeliac (gastroscopy/endoscopy) but a copy of the path lab results would be helpful, I will get onto that. I get your point about have the blood tests and I have all the GPs blood test results now.
Yes GP knows family history - mother is a patient, daughter is known to dr too. I will go back to GP re IF test, see if I can get it done at same time as MMA which has been listed as 'resistant to B12 replacement - ? functional B12 deficiency' on the lab form. We shall see! Thanks again.
I have found Martyn Hooper's book really helpful (could give Dr a copy - great idea), as well as this forum and a PA buddy has kept me sane though you do end up going round in circles as you try to deepen your knowledge and understanding. Thankfully a few more dots are being joined.... all replies are truly appreciated.
If you want it to show that you're B12 deficient without injections then you need to wait several months. But you already know that you're deficient without injections, so that seems a bit pointless.
If you want to show that B12 isn't getting into the cells despite the injections giving high blood levels then you'll want the MMA test done just before your next injection is due.
Personally, in a similar situation, I went down the SI route.
Thanks fbirder I think that you have captured the issue. It is the Neurologist/Dr that have requested the MMA test not me. My interpretation is that if the test shows that the injected B12 is not getting into the cells we have a different path to tread. If the results do not show defiency (because of having B12 injections - pointles as you say) then it is evidence for Dr to stop injections that meet the deficiency that I know that I have and have evidenced symptomatically. Then I get ill unless I SI. I guess if that happens I know that the cells are getting the B12 and that SI will keep me well. So not an ideal route, but a route nonetheless. Thanks so much for helping me make sence of this.
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Help needed !
Some help please GP going to stop Injections after ten years due to high B12 in blood
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