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Confused about UK testing...

Luac profile image
Luac
8 Replies

Can anyone tell my why they dont use this halo tc test in the UK?

In 2015 NICE identified it as being a more effective test as it distinguishes between active and inactive b12, and it cost £3.50.

I am sitting here wondering how much misery could have been prevented.

Is this test currently available on the nhs?

nice.org.uk/advice/mib40/ch...

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Luac profile image
Luac
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8 Replies
Nackapan profile image
Nackapan

That does look interesting. It says it tests up yo s level of 128umol/l

Can take it slightly higher.

In range seems to be 118-700umol/l

So would 'catch' thise below range but not give how far into the range you are .

If I've understood this.

But as you say if so much cheaper another diagnostic tool ??

Luac profile image
Luac in reply to Nackapan

The usual blood test might pick up the lower range - with the usual caveats.

Nackapan profile image
Nackapan in reply to Luac

Yes. Also gives higher readings too. As I understand it the test you mentioned only picks up low readings.

A useful test . Wish it was used as more people would get one if cheaper??

My very first one was at 57 yrs

Really bad considering symptoms prior to collapse

Gambit62 profile image
Gambit62Administrator

It is unclear how the cost of £3.50 was derived and it sounds from other comments that it is about consumables and does not include capital costs.It isn't clear in the article that the test would really improve diagnosis as there is still a significant grey area. The test is still only measuring levels in blood and in general active B12 is 20% of total ...

There were frequent references to differences in opinion and the need for more research.

Holo-T (US) / Active B12 (UK) does seem to be getting more common which suggests to me that the capital outlay has been the most significant inertia factor.

helvella profile image
helvella in reply to Gambit62

Interesting that The Doctors Lab, which services a large proportion of the private healthcare in London (as well as some NHS, I think), switched to default to Active B12 a considerable time ago.

Cherylclaire profile image
CherylclaireForum Support

Yes.

I was given an active B12 test by a Haematology department in a major London hospital in 2017. I believe that this is their standard B12 test now. I was only given a result of "normal" (over 128) - as Nackapan noted above - which wasn't surprising as I had been having injections twice a week, then reduced recently to one a month.

I think at this stage of my treatment it was quite pointless.

Luac profile image
Luac

Was that test used for your first reading? If not, might it have been useful then?

Cherylclaire profile image
CherylclaireForum Support in reply to Luac

Yes, it may well have been useful before injections started, but serum total B12 was found to be below range anyway (just). It would have been interesting to know what methylmalonic acid (MMA) levels were like then, too.

Folate and ferritin were both low within range, but still treated just in case this was adding to problems- GP believed it might explain hair loss and bleeding gums for instance. Vitamin D was prescribed as part of treatment for osteoporosis of the spine.

Despite B12 injections, I got worse. Despite now high serum total B12 level, my MMA was found to be raised. This was confirmed as functional B12 deficiency, any renal problems having been ruled out first. My GP sought advice and from then on, I received 2 injections a week for 6 months.

At this point, I stopped improving and got worse again- injections were reduced to one a month and I was sent to various consultants for more tests. SIBO was ruled out, Coeliac disease too. Nothing else was found apart from "patchy gastric metaplasia" and "flattened mucosal pattern" in duodenum - the cause/s for which were never explained, or perhaps not discovered.

In the end, I started self injecting, initially every other day. Now twice a week.

I am much improved, but it has been very slow and I still get some symptoms.

It took about two years to get folate and ferritin to stabilise at healthy levels, three years for MMA to fall into normal range - on the 6th test. Osteoporosis has now been downgraded to osteopenia - so effective treatment for that continues too.

(MMA should drop down to a normal level after loading injections - when B12 replete.)

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