I notice that a number of you are searching for information about the above tests. Well, none of them are particularly good - yet. The Active B12 Test (Holotranscobalamin or HoloTC) shows some promise as a front line test to establish the B12 Status of patients but it still needs further development while the MMA and HCy tests need further investigation. See the interview with Dr Dominic Harrison who has been supervising the HoloTC test for several years at St Thomas' Hospital in London in my latest book. I also discuss the possible use of Hcy and MMA as a front line test.
Incidentally, the book also examines and analyses the new Guidelines on Cobalamin and Folate issued by the British Committee for Standards in Haematology in 2014 (following lobbying by the PA Society at the Dept of Health) and the guidelines state quite plainly that if the patient has the symptoms of B12 Deficiency but there is discordance between the symptoms and the test result then treatment should be started straight away to prevent any nerve damage. The guidelines acknowledge that the current test to ascertain the B12 status of patients is next to useless. Similarly the new guidelines state that the test to determine whether any deficiency is due to Intrinsic Factor Antibodies is also flawed and patients can test positive or negative and still have Pernicious Anaemia.
My book also gives some details of new tests that have and are being developed to correct this problem of current tests being unreliable which leads to misdiagnosis and wrong diagnoses - leading to unnecessary suffering.
How good that you are on HU. Is it okay for people to pm you or better for them to ring the PAS?
I can vouch for the fact that the book is good. I gave a copy to my GPs and after many years will finally have some treatment. I plan when I can afford it to give out more copies. Is it possible to get a discount if people buy multiple copies? I also thought your book "Living with PA" was good because I could recognise myself in some of the case histories.
"The guidelines state quite plainly that if the patient has the symptoms of B12 Deficiency but there is discordance between the symptoms and the test result then treatment should be started straight away to prevent any nerve damage."
The problem in my personal opinion is that there are still many GPs and possibly some consultants who are still unaware of these guidelines. Recently someone UK based on this forum posted that they were symptomatic for B12 deficiency with a positive IFA and positive PCA test and they were still struggling to get a diagnosis.
Not just unaware but refuse to read them. I have a very good GP with a special interest in nutrition who is, nevertheless, "too busy" to read new information or books about B12 deficiency.
Go to the App Store and search for ECPD Download the App and register. Once registered search for B12 and take the test. Non Doctors can choose to register as a member of the PA Society
I couldn't face persuading my GP to follow the bloody guidelines. I pushed back a little, sent in BCSH guidelines, even pointed them towards the ECPS app as a carrot to educate themselves. But my serum B12 is 188 ng/L and I live in an area where the cutoff is 150. And That is That.
So I have paid for the very expensive bundle of tests from privatebloodtests and will interpret them myself and make a judgement from that point as to how to proceed. Which may be to self treat, or to return to my GP with the results and demand a diagnosis, or to take no action, if I decide that I've been barking up the wrong tree.
Shall I post my results on the forum as I receive them? You can give me your thoughts!
I was recently diagnosed with functional b12 deficiency /insufficiency at tissue level with the holoTC, MMA and Homocysteine tests at St Thomas'. I've started treatment, bought, read and loved the book. Joined the society. Now wondering what further testing I need to try and identify the route cause...
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Correct MMA test??
Results MMA & Homocysteine
MMA test?!
B12 active test for P.A?
