Update on blood test - sorry long post

[Duffy26]

HI

I finally managed to get back to the doctors to have repeat test of B12/folate. They came back at: .

June 8th at doctors

B12 392 ng/l (130-1100) -(I think this converts to about 280pmol)

folate 5.2 u/g (2.7-15)

TTG 0.9 (0.0 - 10.0)

I was asked to go back as the doc didn't agree with my Medicheck test of B12/folate taken in March and also to have a PA test done.

Medicheck March 17

B12 188 pmol/l (140-724)

folate 2.49 (3.89-26.80)

Doctors in November

B12 444ng (130-1100)

folate 4.5ug (2.7-15)

So now doctor has dismissed any of my symptoms being down to low levels of B12 she said no one would have issues with B12 with those results and with a folate in the middle, although I wouldn't say its in the middle!

. I wrote a long list of symptoms for her from the PA/B12 website (some of which are related to low thyroid but im currently not diagnosed with hypothyroid). She was also meant to test for PA but apologised as she forgot to write it on the screen so it wasn't done. So she is now going to do some more tests but ruled out PA due to the levels. So my question is: could there be any connection to B12 issues with these issues. Is there something called intrinsic factor that I should ask for? or shall I just forget a B12 issue now?

im also very confused with the difference in results from the doctors to Medichecks! whatever has happened I really don't feel well, not like I did a couple of years back. (My tiredness and IBS has got a lot worse over the last year). She for sure will not acknowledge private tests now!.

She now thinks my issues could be due to Sjrogrens! and I said I was going to supplement anyway as it cant hurt to improve levels (or try). she agreed with that.

Any advice gratefully received.

F

[fbirder]

Before re taking supplements ask for an MMA test.

Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. If there's not enough B12 getting into the cells then MMA will be high.

[Duffy26 in reply to fbirder]

ok thank you. I will ask if its on the list when I collect the next blood request form. I have taken tabs for 3 days but will stop now until next tests.

F

[greenbexy in reply to Duffy26]

Just so you are aware, I also asked for this blood test. My GP looked perplexed, saying we don't do that test! And this is from a doctor who compared to some, is one of the helpful ones.

[fbirder in reply to greenbexy]

The local lab probably doesn't do it. It may have to get sent to London. That's what happens in Surrey nhspathology.fph.nhs.uk/Cor...

[greenbexy in reply to fbirder]

Long, long way from Bolton! No wonder my GP shook his head.

[fbirder in reply to greenbexy]

My UK geography isn't great, but might Birmingham be closer?

uhb.nhs.uk/labs/services/la...

[greenbexy in reply to fbirder]

You are quite right, your geography isn't great! Lol. Bolton is in Lancashire, so I presume it will be Manchester or Trafford NHS. Although I have been referred to a haematologist today, hopefully get my MMA test eventually!

[Duffy26]

Ah ok. I will ask for it anyway although if its not a standard test she might say no particularly as she doesnt think there is are any b12 issues!..thank you for the advice ☺.

F

[Sleepybunny]

Hi,

I've assumed you're in UK.

"So she is now going to do some more tests but ruled out PA due to the levels"

Has your GP read the BSH Cobalamin and Folate Guidelines? I gave my GPs a copy as I didn't think they had read it.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart above outlines diagnostic process for PA. Makes it clear that PA is a possible diagnosis even if B12 levels are within range and that people who are symptomatic for b12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment.

PAS (Pernicious Anaemia Society)

May be worth talking to PAS.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it be B12" by Sally Pacholok and JJ. Stuart (USA authors)

[Duffy26]

Hi sleepybunny. Yes im in UK..thank you for the links. I doubt very much that my gp has read those.!

All i know is that something is giving me tingling/cough/breathlessness/tinnitus/btain fog, balance issues, IBS, overly tired,dry eyes/mouth and now memory problems momentarily e.g i forgot my pin number this morning for a minute..ive used it ten years!. I just want them to get to the bottom of my symptoms but its proving so difficult (ive also got hypothyroid sYmptoms too but shes ruling this out as TSH in range at the moment) .Hence why i asked for recommendations for tests etc.

Going to ask for IF, MMA and homocysteine tests now.

FpM