Shortage of b12 testing?: Hi, wondering... - Pernicious Anaemi...

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Shortage of b12 testing?

Meggydo profile image
13 Replies

Hi, wondering if anyone else has been told this. My daughter had nurse come and do a blood test last week for b12 and folate. I rang the surgery this afternoon and was told that across the whole country, the labs are currently having problems testing and have frozen our sample and will test it when they can. I will ring gp in the morning to see how to move forward, but just wondered if any others have had this. Many thanks.

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Meggydo profile image
Meggydo
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13 Replies
JanD236 profile image
JanD236

Yes, there was a post a day or 2 ago saying the same.

Meggydo profile image
Meggydo in reply to JanD236

Thank you Jan, I having been on the site for a while and I now see the posting relating. Seems we will have to be patient. I will surgery tomorrow as my daughter is quite unwell. Thanks for your reply.😀

waveylines profile image
waveylines in reply to Meggydo

Sorry to hear this......am guessing all the covid testing has taken over rather. Hope your daughter gets the treatment she needs and feels better soon.

wedgewood profile image
wedgewood

Only suggestion I have is to try a private lab like Medichecks . You could phone them and enquire if they are experiencing the same problems as the NHS . Very frustrating for you , to put it mildly .

Parksy profile image
Parksy

I’m due to have mine tested tomorrow so I’ll have to check with that. Blood samples can only be frozen for 72 hours for testing. Obviously a lot longer for blood bank.

FlipperTD profile image
FlipperTD in reply to Parksy

I don't know where you're getting your information from, but once separated and frozen properly, samples can be stored for months. I've done it! Granted, when an assay is on 'back order' then unless the requests stop coming in to the labs, freezer space becomes an issue, and once back in action, the catch-up time would be considerable.

This effect isn't a great deal different to what we've all recently experienced with toilet rolls, flour, dried yeast etc. However, labs tend not to panic buy and stockpile!

My advice [if requested] would be that, if the test isn't currently available due to supply chain issues, I would delay having the sample taken until it is. That way, everyone benefits.

Neither would I suggest getting it tested somewhere else in the short term because the results would almost certainly not be comparable due to different methods etc.

Parksy profile image
Parksy in reply to FlipperTD

Hi Flipper, thank you. It was actually the gp practice nurse a that told me that last week when they cancelled my blood test!!!

FlipperTD profile image
FlipperTD in reply to Parksy

It'll settle down soon. It's widespread but certainly not every lab, because it's a competitive market. Once you've picked a supplier however, it's not simply like 'Oops. No Andrex, so I'll take Cushelle instead' because the kits are where the manufacturer makes their money from and the chemistries are different. There's no possibility of using someone else's kits on the analyser, and the analyser itself will probably be on a five year or longer contract. If things get really sticky then labs will send samples to others who use different kits, to cover any emergencies, but that's the exception and not the rule.

Messages can get confusing, and the 'official word' can be misleading too.

'Often in error, but never in doubt' is one to watch for. We listen and tend to believe them because of who they are rather than what they actually know. I apologise here and now for anyone I've just insulted!

Medichecks are operating normally. Frankly though I’m suspicious about NHS labs saying what they are about this. We have been told to use the NHS as normal as they’re open for business!! Total joke.

FlipperTD profile image
FlipperTD in reply to

I wouldn't be too suspicious; this is an example of 'cock-up' rather than 'conspiracy'!

FlipperTD profile image
FlipperTD

There are numerous manufacturers making assay kits for Vitamin B12. Roche, Abbott and Beckman Coulter are just three of them. Roche have recently opened a new distribution centre and 'had problems' with their distribution network. It's been reported in the news.

This almost certainly has nothing whatsoever to do with Covid-19 testing.

The labs choose the platform on which they base their analyses, and if they've picked Roche for B12, well, they're stuck with it until the situation eases, which it should in a few days. Or so the story goes. There's nothing sinister going on; the assay kits have shelf lives, and should come in to the country & lab regularly.

Meggydo profile image
Meggydo

Hi to everyone. Thank you for your replies. Had a telephone consultation this morning with gp and they are allowing her loading doses without the blood test results, so on symptoms. That is fantastic news considering everything. New gp is a godsend he totally gets b12 and said that previous nurse and gp should have kept these injections for life, not stopped them. I just hope everyone can access the b12 without having to fight for it. Wish you all well.

Cherylclaire profile image
CherylclaireForum Support in reply to Meggydo

That's really good to hear. All it takes is a GP that knows you - or a GP who doesn't, but believes what you are saying. Stay with that one !

I have just had a whole raft of blood tests done at the local hospital, appointment but no wait (did not even see another outpatient at all) and was told that results would be available at general practice in "3-5 working days" as usual.

B12 was on the list. Pointlessly in my case, since they know I've been self injecting frequently for years and the practice stopped my 8-weekly NHS B12 injections because of this a long time ago.

Yes - what a waste.

I think waveylines is spot on: all these B12 tests to prevent people having their injections reinstated is using up resources. If more GPs were like your one - and understood B12 deficiency, symptoms and treatment - they would understand that withholding injections will lead to deterioration in many.

Bang goes the budget.

Using a wider net to catch a few tiddlers is not a sensible answer: gasping fish do not respond to Boost spray.

Wishing your daughter well and take good care of self xx

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