B12 low, MMA test refused.: Hi I recently... - Thyroid UK

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B12 low, MMA test refused.

lucylocks profile image
11 Replies

Hi

I recently posted about my Medichecks July results which showed my Active B12

low at 41pmol/L range 25.1 165

Viapath advise checking MMA if level under 70, and I believe Medichecks do the same now.

My doctor said they don't test for MMA but did do some other tests.

Serum B12 has come back at 129 pmol/L range 115 - 1000

Instrinsic factor antibody level 0.98 u/mL range 0.00 - 1.19

Folate has risen from level Medichecks level in July, from 2.7 ug/L to 5.8 ug/L

Ferritin 36 ug/L no range given, I have never had this so low, has dropped from 90 ug/L at Medichecks in July

Spoke to doctor who said no treatment needed, and said they do not do a test for MMA. I said I have symptom of B12 deficiency and she asked was I vegetarian, which I am not.

She said I can take B12 supplements if I want to.

Medichecks results July 2021

TSH 0.01 miu/L range 0.27 - 4.2

FT4 19.1 pmol/L range 12 - 22

FT3 4.5 pmol/L range 3.1 - 6.8

I will add I stopped all vitamins a few months ago because I was breaking out in hives and wanted to check if any of the supplements were causing them, at least I have found they do not cause them, but in the meantime everything as plummeted.

Should I start taking B12 or insist on further tests.

Thank you

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SeasideSusie profile image
SeasideSusieRemembering

lucylocks

Serum B12 has come back at 129 pmol/L range 115 - 1000

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Your GP should take symptoms into account rather than numbers with B12.

You can ask on the PA forum for further help in going forward with your GP, post on there listing your results for B12 and IF and list any symptoms as well:

healthunlocked.com/pasoc

Folate still on the low side, you should supplement with B Complex after further testing of B12 and starting injections or supplementing.

Ferritin 36 ug/L no range given, I have never had this so low, has dropped from 90 ug/L at Medichecks in July

Ferritin seems very low. Medichecks range is 13-150. GP ranges vary. Did GP do this test where it was 36? There has always been a discrepancy between GP and Medichecks tests for ferritin and it's difficult to know which one is accurate. It's unlikely that ferritin level would change from 90 to 36 in a short amount of time unless the 90 result was high due to inflammation or infection.

lucylocks profile image
lucylocks in reply to SeasideSusie

Many thanks for your reply.

I have about 26 of the symptoms, I have lost weight without trying, my summer clothes from last year are really big on me. I've lost approx 10 lbs.

Ferritin level of 36 was the doctors result.

Is the Instrinsic factor antibody test different from the the Pernicious Anaemia test ?

Thank you.

SeasideSusie profile image
SeasideSusieRemembering in reply to lucylocks

Is the Instrinsic factor antibody test different from the the Pernicious Anaemia test ?

I don't know for certain, the PA forum is the best place to advise.

Marz profile image
Marz in reply to lucylocks

The test for Intrinsic Factor is the test for PA. It is unreliable and a negative test does not mean you do not have PA.

helvella profile image
helvellaAdministratorThyroid UK in reply to lucylocks

It depends where you are reading!

There is no single blood or urine test which proves Pernicious Anaemia. Hence, calling any test "the Pernicious Anaemia test" is a poor choice of language.

The Intrinsic Factor antibodies test is sometimes referred to like that. A positive result will usually be regarded as demonstrating Pernicious Anaemia. But, at least in the past, a Parietal Cell antibodies test has also been thought to do so - but not nowadays. And a negative for either test does NOT prove you do not have Pernicious Anaemia.

Please pop over to the Pernicious Anaemia Society forum - there are more PA and other B12 deficiency sufferers there.

lucylocks profile image
lucylocks in reply to helvella

Thank you.

SlowDragon profile image
SlowDragonAdministrator

You can do MMA test privately

nutris.viapath.co.uk/pages/...

holyshedballs profile image
holyshedballs

My view is that your B12 is too low and you should be receiving b12 injections.

A lot of CCG guidance on Vit B12 injections say that GPs should not give injections if the B12 level is above 148pmol/L. This is not in line with the British Society for Haematology guidelines.

onlinelibrary.wiley.com/doi...

They summarise the guidelines as:

The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency.

Serum cobalamin currently remains the first-line test, 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.

Table 2 of the guidelines states that hypothyroidism is a clinical features to guide clinicians in cases of suspected cobalamin or folate deficiency.

It goes on to say:

Pernicious anaemia is one of a number of autoimmune diseases, including Hashimito disease, type 1 diabetes, vitiligo and hypoadrenalism, which may coexist together (Chanarin, 1972; Toh et al, 1997; Perros et al, 2000; Dittmar & Kahaly, 2003).

One of the recommendations is:

Serum cobalamin level of >148 pmol/l (200 ng/l) in the presence of a strong clinical suspicion of cobalamin deficiency should be evaluated further with MMA, tHcy or HoloTC and a trial of hydroxocobalamin given to ascertain any clinical improvement (Grade 1C).

I am in the same position and I have written a letter to my GP pointing out the BSH guidance.

I have yet to hear back from the GP....

lucylocks profile image
lucylocks in reply to holyshedballs

Many thanks for your reply and the information.

Do you mind me asking what your B12 level is ? and do you have many symptoms ?

I have been thinking today, that I am going to do another online consultation with the doctor, to say I am not satisfied and I require more investigations. I will point out the information you have sent me.

I would be interested to hear what your doctor has to say.

I hope you get the treatment you need.

holyshedballs profile image
holyshedballs in reply to lucylocks

Mine was 248 ng/L (182pmol/L) so over the cut off that shouldn't be there.

I am hypothyroid

have

>fatigue swollen tongue

>breathlesness

>tinnnitus

>a decline in my mental abilities, mainly memory and especially for names - which is a good indicator of B12 deficiency.

I paid for a private trial of B12 injections and I improved. I am in the process of persuading my GP to initiate B12 injections.

lucylocks profile image
lucylocks in reply to holyshedballs

Thank you,

Yes I am also hypothyroid, I also have fatigue and breathlessness and a decline in mental abilities, the same as you have.

I also get dizzy and feel off balance when I walk sometimes, carpel tunnel muscle pain a digestive problems., I have also lost weight without trying.

It is good to hear you have improved with the injections.

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