NICE 2024 B12

[Nackapan]

Still trying to decipher the new guidelines. Does anyone know or had a :

Cobasorb test?

I've never heard of it .

Name suggests it tests absorption of Cobalamin

[Sleepybunny]

Hi,

I found a lot of links about it when I searched online for "cobasorb cobalamin absorption test".

[helvella]

Do a search for cobasorb on the entire NHS UK site. Not a single hit for cobasorb.

Which suggests that it is likely to be unavailable whatever the guidelines say.

google.com/search?client=fi...

[Jillymo in reply to helvella]

Thats an interesting link, I clicked on it and got a blue alien fishing ! 🤣

From the links I found it sounds a rather complicated test which I doubt is cheap. I wonder why it is only now that this test has come to light ?

[Nackapan in reply to Jillymo]

Yes.I'm trying to pick out all the positive things on the new guidelines .

Then got side tracked with this

[Jillymo]

It's to test whether patients are absorbing B12 - in other words a test to decide if we need it or not........

What is a CobaSorb test?

The vitamin B12 absorption test, CobaSorb, identifies patients not requiring vitamin B12 injection therapy.

patents.google.com/patent/C...

ncbi.nlm.nih.gov/pmc/articl...

[OldmanD in reply to Jillymo]

Ah that'll be another test that is 50/50 at best and at least 50% of the patients can be told to go home and cry as there is nothing wrong with them. . . . . .

[Peder1962 in reply to Jillymo]

Professor Ebba Nexö showed at danish doctor day 2019 (a doctor education forum) that 25% of the patients could not absorb tablets with cyanokobalamin, and 75% could use tablets - a result based on CobaSorbs tests. So - b12 tablets (cyanokobalamin) dont work for everybody.

[Jillymo in reply to Peder1962]

Interesting to hear its a test thats been around for sometime, not that I had heard of it. Surely those with confirmed PA are not able to absorb. I most certainly cant absorb sublingal B12 ! From what I have read it seems to be quite a lengthy test. It will be interesting to see how many of us get it.

[Cherylclaire Forum Support in reply to Peder1962]

If this resulted in 75% of those (with diagnosed PA ?)patients having their injections stopped and replaced with tablets, I wonder if, five years later, they are all still happy with the tablets - or now forced into self-injecting ?

Now that would be the interesting part of the research !

[Nackapan in reply to Jillymo]

A very involved test.Interesting if accurate.

Then of course the problem if once on injections any process of absorbtion is overridden.

So like a diabetic stopping insulin injections and given tablets.

(Some are trialled on tablets first .)

The neurologist i saw had no faith to date in all the papers he read to use oral b12 when injections are cheap and easy and working .

He thankfully wrote as such to G.p. condoning sc at home .

He himself needed b12 injections !!

And didn't fit the NHS regime of 2-÷ monthly .

Had them 5-6 weekly going by symptoms .

He caught it early as was still working .

How strange to be included on new guidelines when not ingeneral use ??

And seemingly not robust.

[Jillymo in reply to Nackapan]

You were lucky to get a neuro on injections himself. My neuro wouldn't even listen to my symptoms and was insistent my blurred vision wasn't a symptom of a B12 deficiency. I smiled when I saw it as a symptom written in the new guidelines. 😄

I was searching to see if I could find anything that stated how accurate this CobaSorbs test is but as yet not found anything.

I wonder if it is similar if not the same as the schilling test ?

[Nackapan in reply to Jillymo]

Yes it was the third neurologist i saw.I paid as I needed help after coming out of a 6 day migraine .

I went for migraines

So completely by chance got listed to about B12 .

Was offered proponalol and told to stop paracetamol as probably rebound headaches as well .

( i knew they wernt ) but stopped anyhow to prove it .

It was only when i mentioned b12 i was less frustrated by him.

Got to keep my two weekly prescription and eventually one G.p 'allowed ' sc at home .

Used him to 'cover her back' from peer opposition of other 5 gps !

As he'd put it in a letter .

He certainly hadn't heard of a Conosorb test as ran through what was available.

[LorraineQ]

I have never heard of this. Have you anymore information about it?

[Cherylclaire Forum Support]

Strangely, no.

Had everything else, including IFab three times (negative, negative and negative) and MMA six times (raised until the final one 3 yrs on: mid-range normal !)

After the draft came out, I was more concerned that an MMA test as a secondary means of confirming a suspected B12 deficiency might prove difficult to obtain from primary care level.

Cobasorb may prove impossible !

[mozlaw]

sorry i meant 128 which is witin the range for active20 -134 started from march 2023 mine was taken in february 2024