Has anyone on this forum had experience for the transcobalamin testing service offered at St Thomas Hospital?
I am to understand that it requires a GP referral letter to get an appointment but the patient only pays a £15+vat private blood-drawing charge? Have I got this right from the literature?
I am considering it but: Going to London for a blood test is a big thing financially and physically speaking. Is it really worth it for what it offers?
I supplimented with hydroxocobalamin injections until 6 months ago. (1mg every 48hrs for 3 weeks and then 1mg twice a week for about 6 months.) I also took methyl folate 400mcg sublinguals until 4 moths ago. My serum b12 was expectedly 1937 pg/ml but my folate was a the very bottom of the acceptable range scale despite the methyl folate sublinguals. I also came in borderline iron anaemic (serum ferritin) and have been put on Ferrous Sulfate 200mg three times daily for a month then retest.
There is a 3-generation history of pernicous anaemia in my family. My great grandmother was one of the first to receive cyanocobalamin injections in the 1940's I think. Back in those days the professors actually had her go in to help teach the medical students about how the treatment had affected her as a patient, over the old liver therapy! We also have a history of arthritis and other autoimmune disorders; I am currently being reffered to Rheumatology as I am now arthritis symptomatic but they will consult with neurology/haemotology/endocrinology as needed.
My concern is the b12 isn't really doing much possibly due a Transcobalamin issue; so would the test be worth doing? Yes; I know it was naughty to get the b12 injections before a serum b12 test but I was not in a physical position healthwise to get the appointment with the Dr and the tests before I took the b12 course.
Thanks for any advice and suggestions.
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bdole2018
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If you get the transcobalamin test then it’s a good bet that it will give high results.
It sounds as if you suspect you have a functional B12 deficiency, where serum levels are high but the B12 isn’t doing the jobs it is supposed to do. Having too little transcobalamin (active B12) is one possible cause of a functional deficiency.
A better set of tests wouldn’t be to hame methylmalonic acid (MMA) and homocysteine (hCys) tested. These two biochemicals are used up in reactions mediated by B12. If the levels in blood are raised then that’s a good sign that the B12 isn’t doing it’s job properly.
If you were to have a functional deficiency then those two tests would tell you, whatever the cause.
I did ask my GP about MMA and homocysteine when I got my bloods ordered. She isn't allowed to order them per the local clinical comissioning rules. I presume then it's something that a consultant would have to order?
If that's the case; I'm just hoping a Rheumatologist can do it without having to completely refer me to haemotology as I don't really want another multi-month wait for an appointment if I can avoid it. Waiting until July is bad enough.
Going to have to take b12 even if I was not having problems already as the antacids I now have to take with the naproxen anti-inflamatory to avoid damage, cause b12 depletion by themselves if memory serves? Managed to avoid Proton-pump inhibitors in favour of the older h receptor antacids. Not touching omeprazole even if you paid me!
When I read the literature from the testing company; it made a big point that transcobalamin had not been properly stabilised for reliable room-temperature storage. Essentially; it said the sample must be frozen and remain frozen if it is to be transported or stored before processing.
I'm not aware of any service within the nhs that does frozen bloods transport anymore. I could pack it in an insulated case with dry ice but; I would then need an epxensive special courier to ship it instead of Royal Mail. In any case: It looks like there are more important tests to try first.
Unfortunately, it didn't last. Two generations of medical doctors later: Her GP took her off b12 replacement therapy injections as her levels were "sufficient" so she apparently "didn't need further injections."
As you can imagine; she went into decline steadily over a couple of years after that and died. Unfortuantely in those days; it was difficult for family members to question medical doctrine as we didn't have all these associations and internet access to check the research. One could say it was coincedence given her age but I think with everything the average PA patient goes through if not properly treated we know better.
That's a very sad ending. Lost education needs a mountain-mover to re-establish, and listening seems to be a disappearing skill.
Getting any sort of concrete diagnosis is difficult, getting treatment that repairs -[rather than simply maintaining the damage, then allowing slow deterioration until it becomes undeniably the truth whatever your blood might be saying]- is then largely our own responsibility, because of lack of diagnosis. From this point, objection to self-treatment becomes the focus for consultants, making any sensible discussion regarding diagnosis impossible. For the best of GPs, the ones that have witnessed (and reacted to) what they have seen happen, this must be extremely frustrating.
After becoming very ill on the usual one-every-three-months, then again but slower on one every month, my own GP tried me with 2 injections a week and initially, there was improvement- 6 months later, I started deteriorating again. I have only ever been able to maintain general improvement levels long-term by self-injecting every other day, leading me to believe that I cannot absorb B12 from diet (or oral spray- although I've tried reintroducing it every so often). Some symptoms have gone, some less severe, some less often. I have been doing this since September, when haematologists told my GP that their recommendation was certainly no more than one injection every 2 months... which I already had established would lead me to deteriorate cognitively, behaviorally, and physically = no alternative.
No I haven't, because this seems to be working (albeit slowly), and basically too chicken to risk going back one more time to where I was. Regarding "inherited metabolic" type of PA- not really sure what that is, but have been seeing an inherited metabolic diseases consultant who is testing me to find out why MMA raised: this will take a long time, and so have a return appointment in 1 year.
Hi bdole2018 - forgot to add: my homocysteine levels were not high at any point when tested. My MMA levels always come up as raised : GP said that this is rare for her and she has only ever had 2 cases: me and another patient 10 years ago- diagnosed with functional B12 deficiency, which is why she made that diagnosis for me....... inherited metabolic diseases consultant however told me that all the B12 deficient patients that he has seen had MMA levels many, many times higher than mine. Conflicting observations, although it's probable that his other patients were not self-injecting every other day. He did once ask me if I would stop injecting for 3 months- you know the answer to that ! Stichting B12 Tekort (pinned posts on R/H side) say slightly raised MMA in adults usually points to B12 deficiency.
It's understandable that you don't want to stop the b12! I think you would be quite right in thinking the MMA would be higher (and eventually possibily raised homocysteine) if you stopped taking b12. "Inherited metabolic pernicious anemia" is another term for "functional pernicious anemia." ie you have to inject a lot just to get your body to process enough to function on.
- Was previously diagnosed with Functional B12 Deficiency (not Functional Pernicious Anaemia- which I have not heard of before) by GP due to raised MMA and very high plasma B12 levels despite deterioration, when on 1 injection every 3 months. This was confirmed by St Thomas' by blood test providing no kidney problems. Luckily my GP had anticipated this and had the kidney tests done simultaneously. However, she did say that her one other FB12 patient of 10 years diagnosis was doing well on 1 injection every 3 months. (Although I was thinking they are probably self-injecting between these!)
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