Halo test.

[SarahFerguson]

Ok, my 18 year old son has Gastritis diagnosed in Nov 16. His last B12 test was 174 (within range by low end) he has symptoms of PA . His GPC and IF tests have come back negative. There is a strong family history of PA. I have now pushed for haemologist to look at bloods and get his active B12 sereum checked... he has a blood test for this Halo b12 active test - I asked for MMA when I saw Gp but she was not able to book this particular test on her screen! What's your thoughts on Halo test please? Thank you.

[Sleepybunny]

Hi,

Link about Active b12 (holotranscobalamin)

active-b12.com/frequently-a...

Has he been taking B12 supplements recently? If he has this may affect results of Active B12 test.

If your son sees haematologist soon, it might be helpful to take a copy of flowchart below. Flowchart mentions that where a patient is symptomatic for B12 deficiency, has B12 below 200ng, responds to B12 injections eg symptoms improve but has a negative IFA test, they should be diagnosed with Antibody Negative PA. My experience is that even some haematologists are unaware of Antibody Negative PA.

stichtingb12tekort.nl/weten...

Does haematologist know about family history of PA?

pernicious-anaemia-society....

[SarahFerguson in reply to Sleepybunny]

Hi Sleepybunny, I'm at the end of my tether. Its taken me over a year now trying to get a diagnosis for my son, I know there is something wrong, but i'm faced with ignorance by GP knowledge of B12. I've pushed GP into Haemo referral. Hes not on any B12 supplements as GP doesn't think he is B12 def. However, looking at info in Martyn Hoopers book, the fact he has Gastritis (inflamation of stomach lining) recurrent mouth ulcers and other symptoms of PA you would think the link is already staring them in the face.... NOT so, just because his last bloods did not show a raised MCV or low B12.... I did argue the low end of B12 result for an 18 year old was not acceptable and explained the strong family history of PA, it just fell on deaf ears... SO MAD!

[clivealive Forum Support]

Hi SarahFerguson I don;t know if this is relevant but I had a perforated peptic ulcer had had two thirds of my stomach removed at the age of 17 back in 1959 and at no time has anyone ever determined what caused it and as far as I know there is no family history of P.A.

Nine years later in 1968 I had a "Schilling test" carried out which proved inconclusive and four years after that in 1972, out of sheer desperation to find out what was wrong with me, my then doctor arranged for me to have a second (unheard of) "Schilling test" which proved positive for P.A.

I think the old Schilling test was deemed to be more accurate than the modern ones but is no longer carried out on the NHS because of difficulty in obtaining the radioactive element of the test. I don't know whether it is available anywhere privately.

I do hope you find some answers for your son soon and wish him well.

[SarahFerguson in reply to clivealive]

Hi Clive, thank you for your comments. I am hoping that the Halo test comes back with a conclusive result. However, my faith in the GP's now has been totally destroyed and I'm feeling so angry with the system of testing for this horrible condition. I am trying so hard to get an early diagnosis for my son and being hit with brick wall after brick wall is quite demoralising . I think personally, he is in the very early stages of this condition and the results are not showing what the GP is looking for, as in your case it took 4 years from one schilling test to get the right result.

I actually had my own B12 jab this morning (every 2months) and was faced with a nurse had that disapproving look that I should be on B12 every 3 months - I have this every time I have my Jab. I'm fed up now.... I'm considering moving surgery, however dont know if that will help!

[Sleepybunny in reply to SarahFerguson]

Perhaps you could take a copy of the BNF page Chapter 9 section 1.2 with you to your next B12 jab appt just in case there's another disapproving look...

evidence.nhs.uk/formulary/b...

[Gambit62 Administrator]

I'm not aware of anything called a halo test in relation to B12 -

do you men holotranscobolamin - holo-T (also known as active B12 test.

This test has one advantage over serum B12 in as much as it look at the active forms of B12 in your blood - however, it is still looking at what is in the blood and not at what is happening at the cell level. MMA and homocysteine are looking indirectly at what is happening at the cell level which can be more useful.

Really scary that doctors continue to remain woefully unaware of the huge limitiations of serum B12 and using raised MCV as a measureof B12 deficiency - serum B12 is going to miss 25% of people who are actually B12 deficient and relying on MCV is going to miss 30% - quite high margins of error and if doctors were more aware of that it might change their attitudes to using a single marker and ignoring evaluation of symptoms.

Sorry to hear about the nurse - very irritating. Can understand why you are feeling fed up.

You don't have anything to lose from at least investigating the possibility of moving to another surgery.

[SarahFerguson in reply to Gambit62]

Hi Gambit, yes I did mean holo although on the blood form it says Halo again another cockpit by GP. If this test doesn't come back positive then I will be going down private route and wowbetide the Gp surgery if I get a positive result. I will be going down negelance route with official complaint!

[SarahFerguson in reply to SarahFerguson]

Private route for MMA etc

[Sleepybunny]

"my faith in the GP's now has been totally destroyed"

I empathise with you. I ended up with what I think are mild PTSD symptoms after trying to get help from former GP surgery.

It wasn't so much that they failed to see what to me were obvious B12 deficiency symptoms, it was that they gave up on trying to find out what was wrong with me. I was spoken to unkindly more than once.

"I will be going down negelance route with official complaint! "

citizensadvice.org.uk/healt...

"the fact he has Gastritis (inflamation of stomach lining) recurrent mouth ulcers and other symptoms of PA you would think the link is already staring them in the face."

Have you or your son considered writing a letter containing family history,list of symptoms, blood test results and relevant extracts from Uk B12 documents eg BSH Cobalamin and Folate Guidelines.

b12deficiency.info/b12-writ...

Some people on forum have mentioned to GPs that lack of treatment for B12 deficiency could potentially lead to SACDSC sub acute combined degeneration of the spinal cord.

There is an article on SACDSC in library section on PAS website.

pernicious-anaemia-society....

Perhaps your GP would be interested in the section for health professionals on PAS website.

pernicious-anaemia-society....

There is also an app aimed at medics that tests knowledge about the "BSH Cobalamin and folate guidelines"

martynhooper.com/2015/11/01...

[SarahFerguson in reply to Sleepybunny]

It took them nearly 3 yrs to diagnose me - and it was me that researched the PA condition and asked for IF test for myself, that came back positive . But my son is in nomans land with test results but all the symptoms... I'm waiting for holo test now - then I shall go down private route and sue the surgery - I will also be adding my own journey to that process! It's so worrying, if I or My family have any other medical issues I'm very scared!