Blood test

[miccy5]

I think my dad is suffering with low b12, docs said blood test was low but they won't test him again for another 3 months - does anyone know anywhere you can pay to have blood test done sooner?

[fbirder]

How low?

Did they say why they won't treat him now?

Does your Dad have any neurological symptoms (pins and needles in hands/feet, poor balance, mood swings)? If so then this is what the BMJ says -

If there are neurological disturbances then treatment should be expedited and started without delay.

And the British Committee on Standards in Haematology say -

Serum cobalamin level of greater than 148 pmol/L (200 ng/l) in the

presence of a strong clinical suspicion of cobalamin deficiency should be evaluated further with MMA, tHcy or HoloTC and a trial of hydroxocobalamin given to ascertain any clinical improvement

Go back to the doctor and tell him that you want treatment started immediately.

[miccy5 in reply to fbirder]

Thanks - it was 149 - he suffered a stroke in Nov last year and has residual pins and needles from this. They say they won't do repeat blood test until 3 months has passed, they have said the lab would refuse to do the test if they requested it! Which is why I am just wanting to pay to get it done somewhere so if it is still depleted I have the evidence to tell doc to start treatment straight away.

[fbirder in reply to miccy5]

OK, your Dad definitely has low B12. Whether it's very low or not depends on the units they used to measure it - pmol/L or ng/ml. 149 pmol/L is low, 149 ng/ml is very low. But both need treatment , not another blood test.

For a start, the blood test is fairly inaccurate with an error of about 10%. So, if your Dad's real level was 150 pmol/L then it could give a measurement of anything between 135 and 165. So your doc is obviously hoping it's going to be at the higher end this time around to save him the extra work.

Additionally, if your father has Pernicious Anaemia (one of the main causes of low B12) then that fact alone makes the B12 assay suspect as the presence of antibodies to Intrinsic Factor can interfere to give falsely high results.

I've put together a summary document of various important points and links to the scientific documents that back them up - frankhollis.com/temp/Summar... - I suggest you print it out and give it to your doc.

I'd also join the Pernicious Anaemia Society and give them a ring to explain your situation.

It can feel daunting to go against the doc, but sometimes you've got to arm yourself with information and go tell him what's what.

[miccy5 in reply to fbirder]

Thanks - I fight to have my injections every 10 weeks as this is when I need them - they try every year to revert back to them 12 wks. I will print off the documents attached but don't have much fight in my right now - hence looking at a private blood test so I can just show them the result to get treatment rather than argue facts with them

[Sleepybunny]

Hi,

My understanding is that in the UK, patients who are symptomatic for B12 deficiency should be treated even if b12 blood levels are normal range.

As well as the BMJ article and BCSH Cobalamin and Folate Guidelines that @Fbirder mentions, the following document may be helpful

ukneqas-haematinics.org.uk/...

I found page 29 in the BCSH guidelines useful, its a diagnosis flowchart and page 8 has detaisl of recommended treatment.

Have you spoken to PAS (Pernicious Anaemia Society)? They can point you to useful info and in some cases can intervene on behalf of members. Lifetime membership costs £20.

pernicious-anaemia-society.... 01656 769 717

Next link is about writing letters to GP if unhappy with treatment.

b12deficiency.info/b12-writ...

b12d.org

martynhooper.com/ A blog by the chair of the PAS.

B12 books

Could It Be b12 by Sally pacholok and JJ. stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. this book is up to date with UK Guidelines. i gave a copy to my GPs along with a copy of BCSH Cobalamin guidelines.

[miccy5 in reply to Sleepybunny]

I'm already a member of the PAS - like I said I have no fight so just wondered if anyone knew anywhere you could get a blood test done and the cost?

[LtAngua52 in reply to miccy5]

You could try blue horizon medical and medichecks. Easy to find online. I have used both myself. You can do a finger prick test at home or pay a little extra and take the kit they give you to a named hospital or clinic.

[Gambit62 Administrator]

sure if you went to a private doctor they would do the test - BUPA? and probably charge you an arm and a leg for it. However - with fbirder on your father not needing another blood test - he needs treatment - particularly as the stroke may have been down to cardio-vascular problems caused by B12 deficiency.

I know that it is difficult to fight but sometimes putting things in writing to a GP can help - just stick to the facts about B12 deficiency - pointing out that there may be more than just the stroke going on with his symptoms ... and that B12 deficiency can lead to cardio-vascular problems leading to stroke so he may already have been deficient for some time.

I had similar problems getting my mother treated but at least her GP was open to sensible argument - she has multiple problems as a result of diabetes ... though I suspect some of them may be from B12 deficiency due to long term use of metformin ... which was the wrong drug for her type of diabetes anyway but that's another story.