Try to work out if I have pernicious anemia - is the medichecks pernicious anemia set of tests good, or what other tests do I need?

[Carrie234]

I recently got a B12 result from monitor my health of 68 pmol/L (range 38-210).

I read in the NICE guidelines that between 25 and 70 pmol per litre is "Indeterminate test result – possible vitamin B12 deficiency".

I am thinking of trying some B12 supplementation to get my levels up, but before I do that, I'd like to do any tests to find out if I have a B12 issue while I'm still only getting B12 from my diet and not from supplements.

Is the medichecks pernicious anemia set of tests a good one to go for, or what other tests do I need?

Many thanks.

This is what the medichecks test includes:

Autoimmunity -

Intrinsic factor antibodies

Clotting status -

Platelet count

MPV

Iron status -

Ferritin

Red blood cells

Haemoglobin

Haematocrit

Red cell count

MCV

MCH

MCHC

RDW

Vitamins -

Folate - serum

Vitamin B12 - active

Methylmalonic acid (MMA) - serum

White blood cells -

White cell count

Neutrophils

Lymphocytes

Monocytes

Eosinophils

Basophils

[Dancer57]

Hi Carrie234

You could test your MMA levels privately, I had mine tested with Regenerus Labs last November. It was a urine test cost £150. The Medichecks PA test if I remember rightly is quite expensive but up to you of course. My MMA result was high and indication of possible B12 deficiency.

My private Active B12 with Medichecks last year came back at 28.6, also saying possible B12 deficiency. They suggested I do an MMA test.

My GP was not really interested. However, I did get her to test my Autoantibodies for various things but it included Intrinsic Factor and Parietal Cells. My IFAB was negative but Parietal Cells positive. Perhaps your GP would do the same for you if you ask.

I recently took my results to a new Dr who too was a bit reluctant as my total B12 is 422. Anyway, he requested Active B12 and MMA testing. The Active B12 got rejected but amazingly I got the MMA done . I tested privately with Monitor My Health for Active B12 and result is now 27. MMA result back as high. I have appointment with GP next week at his request. See what comes out of that.

I don't supplement with B12 or anything else as I refuse to until the NHS accept that I have a possible B12 issue going on. Taking a supplement could skew any test results. I was Folate deficient end 2022 and was very poorly, long boring story but my profile explains.

I have Hashimotos and my mum had PA.

From my own experience I would get as much evidence as possible to back up your case when seeing a GP. I know it definitely depends on the GP which is why I changed surgeries. If you have symptoms as well as test results that indicate a problem going on a GP "should" take you seriously.

Good luck.

[Carrie234 in reply to Dancer57]

Hi there Dancer57

Good for you sticking to not supplementing B12 until you get the B12 issue identified. I am in a similar situation. I have a strong impulse just to take some B12 but I am stopping myself, as I really feel this is a great opportunity to find out what is going on with me having had no B12 supplementation at all.

I am also very low in folate - 3 micro g /L (range 3-25). I think that might well have been causing a lot of issues for me, and I know that low b12 and low folate symptoms can be very similar too. In my case I am feeling better from greatly increasing my dietary food folate for the past 3 weeks (it's a long story, but basically I'm intolerant to every form of supplemental folate even in small doses - I tried 4 forms). My ferritin is also too low at 46 micro g/L (range 10-410).

I'm not sure if my post made it clear but the MMA test is included in the medichecks test bundle, so I hope that would make things clear for me along with the Intrinsic factor antibodies and the various red blood cell tests.

In my case I want to get my folate, b12, ferritin all to *optimal* levels rather than just 'in range', and then I want to see if my t3 and t4 levels also improve in response to that. I'm hoping they will.

I just read your profile and I also have heart problems as my main hypo symptom, solved through thyroid medication, but my t3 and t4 levels are not where I want them yet hence my current push on b12/folate/ferritin levels.

What were your symptoms and recovery from low folate like?

[Dancer57 in reply to Carrie234]

Hi

Your situation is very similar to mine.

I saw a Nutritionist last year and got a plan to improve my B12 as it has never been very good, not deficient but middle range despite eating quite healthily.

I had spent months eating loads of B12 foods and I thought I will test my levels as I must be bursting with the stuff. This was when I tested Active B12 out of curiosity. I nearly fell off my chair when it came back as borderline low 28.6, how could that be? This is when my B12 journey to date started.

I know if you have Thyroid disease you don't absorb vitamins as well as you should. I have been deficient in Ferritin , insufficient in Vitamin D, deficient in Folate and now this B12 issue. When I was ill I had to tell the GP to test my vitamin levels and that is when I found out about being Folate deficient, it was at 2.6 so under 3. I was prescribed Folic Acid tablets by the GP for 3 months. Thing is I have a very good diet so I could never make out why I keep becoming deficient. I have to say on taking the Folic Acid, my mainly heart issues, settled. If you can't take Folate then getting it via food is important and I am glad you are seeing an improvement. Keep up the good work

My Folate was 6.9 a few weeks back and the MMH test says it is now 3.6!!! I have not changed my diet. Recent Thyroid test with Endo has come back as me now being too low TSH and FT3 and FT4 dropped slightly. Why is that?? My Levo brand has been changed by Pharmacy might be that. Re test in a month.

I think there is definitely a connection with low vitamin levels and how your Thyroid works, that is just my opinion, although Doctors and Endos would probably say not. Strange vitamins go down and Thyroid levels start playing around. Perhaps one day someone will have an answer!!!

It is so frustrating.

The Medichecks PA test does cover just about everything, so if you are happy to go ahead with it you will get the tests you need so although a bit pricey you will get the answers to all you need to know.

I wish you all the best with any further testing you decide to do.

[Carrie234 in reply to Dancer57]

Yes I do think that vitamins and thyroid levels are connected. Reading around, I've found others who have had their thyroid levels improve with ferritin, b12 and folate increases which is encouraging.

It is very hard puzzling it out though and sometimes levels move in the wrong direction! In my case I have not worked out why I react badly to folate supplements when I am pretty much deficient in my folate blood test.

That is very good to hear that your heart issues settled on folic acid.

Good luck with everything - here's to both of us getting it all fixed!

[Dancer57 in reply to Carrie234]

Hi

I am no expert on these matters I only go on my own experience and I know on Thyroid UK they always mention about vitamin levels.

I know that since having a thyroid problem I seem to have developed deficiencies where I would never have thought I would as I eat a varied and healthy diet. I have Autoimmune Thyroid disease and it seems strange, it might just be coincidence, that when my Thyroid levels start fluctuating my vitamin levels appear to have lowered as well.

I note FlipperTD comment, which is correct the GP does have access to a vast range of investigations available to them, the only problem is getting the GP to agree to it which is probably what a lot of people will say. It is so annoying having to test privately when you know it can be done on the NHS in certain instances.

I did a two bottle finger prick test for MMH and one bottle was rejected because the blood had clotted by time it got to them and was rejected. It did arrive next day but deteriorated in delivery process. The other bottle, which was the one I was interested in was ok. Personally I normally go down the blood draw route as I am not keen on finger prick tests, I would sooner pay for someone to take the blood. I only did finger prick test recently as I have had so many blood tests!!!!

As for the MMA test, if you having it as blood test, it has to be in the laboratory within half hour of the blood draw otherwise it is considered too old. FlipperTD might well confirm that. I had to have blood test at hospital and it was taken straight to the Lab.

It might be worth trying your GP surgery first and see what they say. If no good I would tell them you are going to test privately as want to find out what is going on. That is what I told my doctor and depending on the results I would make appointment for another review.

Anyway, you mull it all over and do whatever you feel is best for you.

[FlipperTD]

Hi Carrie. I'm a scientist, not a medic, so I'm not qualified to give medical advice, but I know a great deal about the analytical procedures.

In terms of getting tests done, your GP has access to the NHS and the vast range of investigations available. All of these are validated and subject to quality assurance testing. Likewise, the availability of good sample collection systems is there. You've already paid for this in general taxation. The only extra cost could be the bus fare for you to get the sample taken!

I don't know your circumstances and consequently it's hard to comment, but tests such as these, although they can be performed on 'finger-prick' samples in tiny vials, and sent through the post, this multiplies the opportunity for errors. If you wish to go down the 'private self-testing' route, I urge you to limit the variables as much as possible and get venous samples taken, and to find out exactly how long it will take for the samples to reach the laboratory.

For some investigations, a delay of as few as a couple of hours will see deterioration of some analyses. Temperature control of the sample in transport is yet another factor.

Good luck.

[Carrie234 in reply to FlipperTD]

Thank you flipperTD! Much appreciated.

The medichecks test is a venous one. I would have to go to a local-ish hospital to get it done. I really hope they would temperature control it properly but it's rather hard to find this out. I bet if I ask medichecks or the hospital they will reassure me and say yes it's all correctly done.

Do you know how long should the samples take to reach the lab? And what is the temperature they must be kept at? Then at least if I know that, I can try and get some actual numbers out of medichecks to make sure I'm happy with them.

It's very true the GP should do all this for me ... but at an active B12 of 68 I don't think they will take these tests for me, they will say I am fine.

[Flintfootfilly]

In all of this, your symptoms are most important. What are they?

That will help you decide what approach is most appropriate.

[Carrie234 in reply to Flintfootfilly]

Yes I do have low B12 symptoms, but they overlap with symptoms for other things, so it's hard to know what is causing what. I do have low folate, ferritin, and other issues so it's tricky to know what is what.

[Corney23uk]

Hi Carrie234 - yes that test would give you a good indication. Getting blood tests at the GP’s is so difficult. Another one to try is Blue Horizon which is all processed by hospital labs. Main thing for your Active B12 test is not to take any fortified foods for three days before hand. Everything from marmite to breakfast cereal try to avoid and energy drinks - it is hard to do but is worth it and will give the most accurate result.

[Carrie234 in reply to Corney23uk]

Many thanks Corney23uk, yes I'm not taking any B supplements or fortified food so I should be OK on that. Really hoping to get some answers with the test.