Pathology Lab refused to do MMA or recent B12 test - a bit of a moan, sorry!

[HappyKatieA]

Hi all,

I hope you had a lovely Christmas.

I had blood taken for an MMA test at the beginning of December, and blood for a B12 test taken on 19th December. I've been chasing both for a few days with the GP surgery, only to be told today that the Pathology lab refused to do both tests as they were considered to be too close to my last tests on 14th November.

I'm absolutely gutted, I still feel totally rubbish, and although I've been signed off from work (I'm a part-time teacher) for 8 weeks (two of which have been in the holidays), I have had no treatment, just test after test.

My most recent result was 156 pmol/L (200-910) on 14th November. My GP has referred me to see a haematologist and an immunologist, but of course, I'm going to have to wait for some time to see both of them (April for the Haemotologist).

I have booked an appointment with my GP on Tuesday 2nd, but I'm really not sure what to say. He's totally refused to do B12 loading doses so far.

I had a negative Intrinsic Factor (I know these aren't accurate about half the time).

I'm not sure what you can say really, I just wanted to 'speak' to people who understand. I've slept through a great deal of Christmas, which is no fun for my two sons or husband. I just want my life back.

Katie

[Sleepybunny]

Hi,

Sorry to hear you feel "totally rubbish". I remember one festive season where I just sat in a chair or lay on the bed and cried.

Have you considered joining and talking to PAS?

pernicious-anaemia-society....

[phone] answerphone, may take a few days to get a response.

There may be a PAS local support group close to you.

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

"booked an appointment with my GP on Tuesday 2nd, but I'm really not sure what to say"

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Person who runs B12 Deficiency Info website can be contacted by e-mail. Details on website.

"He's totally refused to do B12 loading doses so far"

Has he seen flowchart below from BSH Cobalamin and Folate Guidelines?

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

and this BMJ b12 article?

BMJ B12 article

bmj.com/content/349/bmj.g5226

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

When I had exhausted all chances of NHS treatment, I chose to self treat.

"I've been signed off from work"

I hope you have union support if necessary.

[HappyKatieA in reply to Sleepybunny]

Hi Sleepybunny

Thank you so much for responding.

I wrote to the practise manager in November with all relevant info etc, she just passed it back to my GP. I asked specifically why I was being withheld treatment as per the BMJ / NICE guidelines, GP says he wants more info from specialists, he doesn’t feel my B12 is low.

I am a member of PAS, I did actually call them a while ago for advice, and whilst helpful, didn’t offer to get involved.

School are being very good, I think I’m going to have to go back in Jan, actually looking forward to it, but I know it’s going to have repercussions for days afterwards.

I’m so sorry you’ve been here too, and everyone else, it’s so disheartening.

I’m thinking of self treating, but I do want to work out what’s causing it. I’ve been holding off because I keep having to have more tests and I don’t want them to be skewed.

[Sleepybunny in reply to HappyKatieA]

Hi,

Can you get to any of the PAS support groups?

I don't think I'll ever know why I am symptomatic for B12 deficiency. I do not have a PA diagnosis. All I know is that without B12, my symptoms worsen and symptoms that previously disappeared come back again.

[HappyKatieA in reply to Sleepybunny]

Thanks Sleepybunny

I’ll look up the PAS support groups, thank you.