what tests can be done at home can show b12 deficiency/pa please

[diagnosed2013]

My doctor won't test for b12 deficiency so wanted to rule it out, what tests do people do at home please? I've tested active b12...

[AKatieD]

There are companies who send you a kit. You prick your finger and collect a few drops of blood in a little bottle. Then post it back to the company who email you results in a few days. Medichecks is one such company for example, but there are quite a few.

[FlipperTD]

Scientist, not medic.

If your doctor won't test for B12 deficiency, it would be interesting to know why that is. Your doctor has access to more tests, done in a more thorough way, than you will find available from home.

Personally, I would advise against finger-prick, postal services because it's difficult enough with good, venous samples, stored appropriately, processed promptly without postal delays. Small samples are 'trouble' for labs and blood doesn't improve on storage!

I realise that this isn't helpful input. It might be worth seeing another doctor.

[AKatieD in reply to FlipperTD]

Sufferer, scientist, not medic.

Sorry you have not had good experience FlipperTD .

There are thousands of thyroid sufferers who regularly use these firms to keep on top of their thyroid condition and the results are accurate, rarely fail and are usually consistent with venous samples and NHS testing.

The NHS has criteria for when they will and won't test you, whether you request testing or not. If you don't meet the criteria they won't test your B12. I had to pay for a private test for my daughter and give the g.p. her results. For thyroid sufferers, g.p. s often can't get NHS labs to process all the tests needed (often will only do TSH, when what is needed is free T3 and T4 too).

However, if you don't want to follow the quick and cheap finger prick route diagnosed2013 you can also pay to have a venous sample taken.

[FlipperTD in reply to AKatieD]

Good points, well made. Thyroid testing is less of an issue; newborns are tested by blood spots.

[helvella in reply to FlipperTD]

I think they also tend to use LC-MS/MS-based measurement methods rather than the more usual immunoassay techniques used for most thyroid hormone and TSH testing.

Please correct me if I am wrong!

[FlipperTD in reply to AKatieD]

Sorry for the previous short answer; in a rush to do something else.

My experience of finger pricks has been through practice in the NHS; I'd much sooner collect a venous sample from a patient than a capillary sample, and the quality of the results of fingerpricks for my area [haematology] was less good than venous samples. Some things work very well indeed on capillary and blood spot analyses, but some things don't. The NHS view did change when monitoring Thyroid replacement therapy, from 'TSH and Free T4' to simply measuring TSH.

Venous samples every time for me!

[FlipperTD]

Tandem Mass specs seem to have taken over the World! [It's all witchcraft. The scene in 'The Scottish Play' on the blasted heath sums it up.]

[AKatieD in reply to FlipperTD]

Lol, I do understand FlipperTD .

In an ideal world they would not be needed and the NHS would provide what we need when we need it. Unfortunately budget is king these days, not need.

If you are on your own to manage your health, fingerpricks are cheap, cheerful and work well for thyroid and most vitamins. Sometimes less good for iron, but you can get active B12 that way which you can't get even through venous sample on NHS.

[FlipperTD in reply to AKatieD]

I gather that in the USA, it might not be possible to get an active B12 anywhere, although it's not something I've tried, personally. If that's true, I wonder why?!

[AKatieD in reply to FlipperTD]

I have no idea really but a quick google suggests it was developed in Dundee, Scotland

[FlipperTD in reply to AKatieD]

That's correct. An ex-colleague went to work for them, and then came to try and sell it to me.

[WIZARD6787 in reply to FlipperTD]

Active B12 testing is readily available privately + from a doctor in the USA. Some doctors may choose not to order them.

[FlipperTD in reply to WIZARD6787]

You're clearly better informed than some, then. Others have reported on here that they can't find it for love nor money.

Thank you for your feedback.

[WIZARD6787 in reply to FlipperTD]

What I would like to know is why I can't order a homocysteine test privately without a prescription. Actually, as I wrote I only asked one lab. Perhaps it's not regulation but policy.

[FlipperTD in reply to WIZARD6787]

In the UK it would probably have to be done through a medic.

As you suggest, it's probably clinical policy rather than sales policy! Good luck with this one.

When my lab was doing them, they weren't a general requestable test. It was 'off-line' for a research study.

Likewise, soluble transferrin receptor wasn't requestable but we were doing them as part of a study.

[WIZARD6787 in reply to FlipperTD]

In the US all collection has to be done by licensed personnel and all lab work has to be done by licensed personnel. Different licenses.

I looked it up and the issue is the test for homocysteine has to be done immediately after sampling. So I would need to find a facility that does home cystine testing in-house.

[FlipperTD in reply to WIZARD6787]

It's much the same here in the UK; the market is highly regulated, as it should be. I remember that the samples we tested had been frozen and thawed, so there is some leeway. But first you need to find a lab that does them, and also is prepared to help you.

Good luck.

[WIZARD6787 in reply to FlipperTD]

Current protocol in the US is not to freeze. I don't think it's a matter of being willing to help rather profitability.

[FlipperTD in reply to WIZARD6787]

To be honest, I'm not a huge fan of freezing samples, but sometimes it's necessary. But if it degrades the analyte then it makes life tricky. To be absolutely honest, many analyses don't like being delayed or temperature-abused.

I did ship a batch of positive IFAb samples to the States on dry ice. [they wanted them, and it was a favour to a firm who had been very helpful.] That was a nightmare to organise.

[diagnosed2013]

Obviously that was serum b12, & I've been taking folate & b12 for a couple of weeks now as I've felt so rough & feel a bit better after taking it...but my thyroid I think is struggling as I've been getting an awful cough in my throat & hoarse voice from no where. My doctor thinks it's all menopause, but numbness & pins & needles in hands & feet & other issues wouldn't be like that due to menopause?

[Hockey_player in reply to diagnosed2013]

How much B12 are you taking? For PA it should be at least 1000mcg sublingual. For some people supplementing works, but many others need injections.

[WIZARD6787]

Thank you all for your experience/expertise with finger pricks. ," a good plan that can be executed due to cost beats a better plan that will not be executed." I personally do not live in a world where expending the effort finding a more competent doctor is a rational choice. Therefore it is no solution at all. Perhaps flipper has a solution by giving a list of available doctors.

[Sleepybunny]

Hi,

Thread about Tests for PA and B12 deficiency

Some of these tests cannot be done at home.

healthunlocked.com/pasoc/po...

Results of some tests may be affected if you are already supplementing with B12.

Link about What to do next if B12 deficiency suspected or just diagnosed

b12info.com/what-to-do-next/

Have you considered joining and talking to PAS (Pernicious Anaemia Society)?

PAS membership is separate to membership of this forum.

You do not need a confirmed PA diagnosis to join.

pernicious-anaemia-society....

PAS has support groups in UK, Sweden, USA, New Zealand -Australia

pernicious-anaemia-society....

I think you can attend some support meetings without being a PAS member but check with group co-ordinator.

Lots of useful PAS leaflets including

Helpsheet for Patient-GP Discussion

pernicious-anaemia-society....

I left some detailed replies in this thread below eg UK B12 documents, links for those struggling to get adequate treatment, help for GPs

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I am not medically trained just someone who struggled for years with unrecognised and untreated B12 deficiency.