Active B12 Test Now Available In London

[neilb25]

There are people on here better than me who can explain the science behind MMA and homocysteine! There are also many good entries about the various tests earlier on in this thread. Or have a look at St Thomas website and the GSTS Clinic.

My understanding is that if the results of these 2 tests are raised, then they indicate B12 deficiency at the tissue level. This helps to confirm diagnosis if the serum or active tests are borderline/low normal or if your red blood cells are not indicating anaemia. These are the final deciding factor if you're stuck in a grey area as I was. They may also recommend checking folate levels at the same time. Any problems with kidney functions will affect the reliablity of the results. Homocysteine can affect things like our bones, our cardiovascular health and our neurological health so it has other important long term functions as well as being a good indicator for current useful B12 levels.

Hope this helps!
Neil

[JDee]

This is from a leaflet from the organisers of the Active b12 test. It gives a little background but also details on how a GP can do the test and send it off!!

About vitamin B12 - Vitamin B12 has the largest and most complicated structure of all the vitamins. In the centre of this structure is a cobalt ion, hence the term cobalamin is used for any compound possessing vitamin B12 activity.
Vitamin B12 is synthesised by micro-organisms and enters the food chain in food of animal origin.
To detect patients with vitamin B12 deficiency at the earliest opportunity, GSTS offers; ‘Active’ vitamin B12
(holotranscobalamin), a new laboratory marker which replaces the serum vitamin B12 test. ‘Active’ vitamin B12 minimises repeat or inappropriate testing that can occur as a result of the, less effective serum vitamin B12 test which has been recognised as being a relatively late marker.
What GSTS offers - It is well known that the diagnosis of vitamin B12 deficiency is problematic. Current assays tend to measure total vitamin B12 which leads to a large grey area where deficient patients can be missed. This is because for this vitamin there is a poor correlation between circulatory levels of total vitamin B12 and actual status at the tissue level. Conversely, patients can be inappropriately classified to a deficient state with the inconvenience and expense of long term supplementation regimes.
GSTS now offers the ‘Active’ vitamin B12 (holotranscobalamin) assay which complements our popular serum methylmalonic acid (MMA) assay; a functional marker of B12 status. Holotranscobalamin is the metabolically active portion of vitamin B12 and low levels in the circulation is thought to be the earliest laboratory indicator of a negative vitamin B12 balance.
B12 Deficiency - Vitamin B12 deficiency is common (especially in people over the age of 60). It also occurs in patients with
autoimmune disease (pernicious anaemia), severe primary hypothyroidism, those with ileal disease, patients on chronic therapy with antacids, proton pump inhibitor (PPI) or H2 antagonists, or colchicine, and in chronic malnutrition states including alcoholism. Other causes include vegetarian or vegan diets, pregnancy and lactation.
The timely detection, and correction, of vitamin B12 deficiency prevents macrocytic anaemia, elevated circulatory levels of homocysteine (thrombotic risk factor), potentially irreversible peripheral neuropathy, memory loss and other cognitive deficits.
Deficient states induced by poor dietary intake (i.e. vegetarian or vegan diets), take up to 20 years to manifest. However, clinical deficiencies as a consequence of abnormalities in one of the multiple steps that regulate cobalamin absorption or enterohepatic circulation present more rapidly (~2 years).
Ultimately, intestinal uptake of vitamin B12 takes place in the ileum by a receptor mediated process that includes the calcium dependant binding of a vitamin B12/intrinsic factor complex. After absorption of vitamin B12/intrinsic factor complex into the enterocytes, the complex is degraded and liberated vitamin B12 is transported into the blood where it binds to transcobalamin forming holotranscobalamin - ‘Active’ vitamin B12. Transcobalamin transports vitamin B12 to
the cells of the body.
What to do - Patients wishing to have the ‘Active’ vitamin B12 test must request it from their GP who can either take
the sample themselves, or refer the patient to one of GSTS’ phlebotomy departments at St Thomas’ or King’s College Hospital, London. Please note that if the patient is referred, they must attend the phlebotomy department with a referral letter signed by their GP or the test cannot be performed.
Integrity of sample – Samples must be taken and transported in the correct way in order to ensure the integrity of the sample. If this is not done, the results could be affected. Please refer to the sample transport page on our website at
http://www.gsts.com/sample-transport . This will provide necessary information on how to send samples, ensuring they are processed quickly by our Central Specimen Reception team.
Sample requirement – Venous blood should be collected into serum tubes (yellow top). Other sample types are not suitable. Before shipping, it is recommended that specimens be removed from the clot. Serum may be shipped ambient (maximum 16 hours in transit), at +2-8°C (wet ice) - stable for up to three days, or frozen (dry ice). The minimum sample
volume required to perform this assay is 200μl.
Advice – We provide expert interpretation of results to ensure your patients are being given the correct advice. GSTS scientists work closely with Clinicians to ensure the best advice and interpretation is provided for each result.
Turnaround time – The turnaround time for the ‘Active’ vitamin B12 assay is within 10 days from receipt of the sample.
Please note: ‘Active’ vitamin B12 concentrations <25 pmol/L indicate vitamin B12 deficiency. For results between 25-34 pmol/L a confirmatory functional assay of vitamin B12 status, namely methylmalonic acid (MMA) will be performed to confirm status.

[JDee]

Renie451 results

Your serum b12 was 363 but Active only 19

Jac

[neilb25]

Renie451 results

Your serum b12 was 363 but Active only 19

Jac

Blimey - that is low. If the Active B12 normal range is 35 to 165, then a result of 19 whilst the serum is well over 300 proves what we are all always saying about the unreliability of the serum test.

Neil

[renie451]

Hello Neil,

sorry I hadn't realised you posted. I'm in a terrible state at the moment. I'm fighting still to get jabs... im currently crying, bcos i want to give up. I changed doctors thinking it might be good to have fresh pair of eyes on results. But noo they won't give it to me even with GSTS report stating B12 def. doctor has ordered another stoopid worthless serum b12 test. I give up .
Don't have any more energy left. I feel as if I will not wake up in the morning ,as chest pains all the time and constant migraine. the tinnitis isn't by the hour in is alll the time constant whirring and square flashes in my eyes..
Yesterday I focussed on an object and it slid to the side and back again, like a pulsing...

My head and hands are soo shaky ... almost like a parkinsons symptom, tremor like.


ooh by the way I mentioned to original doc my active b12 is dangerously low" nooo not dangerously low"she said
How bloody low does it need to be???
Much love
Jox

[neilb25]

Hi Jo,

I'm sure that everyone on here will support you in saying that your B12 is far too low with those ActiveB12 test results.I hope that your doctors listen soon. Perhaps suggest that they take a look on here at some of the stories about St Thomas's? I can't believe that any GP would disregard the advice of a major London hospital. Have you been back in touch with the hospital? They were very helpful with me when I asked further questions. They even translated the active b12 results into the equivalent serum amount. I think they said only 23% of the b12 in my blood was of any use.

The tremors are probably further signs that you are B12 deficient. I get a constant tremor in my left leg when I am deficient and also occasionally in my left arm. One of my GPs gave me a drug that helps relieve the tremors for people with Parkinsons before I was diagnosed with PA as she did not know what else to do. I refused to take it and I know now that the tremor goes for a couple of weeks after each B12 injection but then creeps back again, so the B12def is the cause as far as I'm concerned!

Best of luck with your doctors and keep us updated.
N.

[renie451]

Hi neil ,
just recieved Cyno tabs, wooow that will do bugger all to help me.
Intrinsic factor has come back negative so doc wont give me jabs.

FBC is even worse than 6 weeks ago
serumb12 is now 279 from363, so lord only knows what active will be maybe 10 just a guess!
neutrophil has doubled see post. for ranges

Why is this so difficult to proove??

Much love
Jox

[AndreaM]

just recieved Cyno tabs

You go straight back with these tablets and tell them that they are only to be prescribed to patients with a proven dietary deficiency. See here:

http://www.cks.nhs.uk/anaemia_b12_and_f ... l_scenario

"oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12. It is available on an NHS prescription only for a person who is a vegan or who has a proven vitamin B12 deficiency of dietary origin, and the prescription must be endorsed 'SLS' [BNF 54, 2007]."

This makes me so mad. They haven't a clue and are completely mis-prescribing for your needs,

Andrea

[renie451]

Hi Andrea,

Makes me mad too, would pull my hair out, but It's doing that all by itself!
I have explained this, I am not vegan or veggie doc. Thing is Andrea I didn't get in to see gp yesterday went to drop off sample for hpylori, and asked for my test results (copy) receptionist said I can ask the doc for you if she's going to book you for injections, so I said great. receptionist nips in between patients, and comes out with script, its for cyno tabs she said,
I nearly collapsed on the floor "The doctor has said your intrinsic factor is fine, and your to take these for a week and come back on friday to see how your doing.
Today my plan of action .
Get in touch with St thomas's and get the scientists to battle it out on my behalf
Oh and contact medical ombudsman.

watch this space.

Much love
Jox

[AndreaM]

Hi Jo,

I think I'd also be returning the prescription with a covering letter containing a printed copy of the advice on these tablets as it appear on the NHS website concerned.

I also think you are right in the other action you are taking,

Andrea

[renie451]

We think alike, Andrea
I have printed off a copy about 40 mins ago.

Dr H from st thomas is going to email me advice on steps to take.
I hope there BIG steps. seeing another doctor on Thursday but same practice.
The pharmacist recommended her and said she knows lots on b12 def soo hopefully
I may get somewhere. just maybe...

Much love
jox

[JDee]

Just posting a link to another successful diagnosis from the Active b12 test. Treatment still not quite there though!!

Weeclare_h's Story

viewtopic.php?f=1&t=13260&p=61733#p61733

Jac

[pepper1]

Hi

Just to let you know I have undertaken the Active B12 test at St. Thomas' Hospital and although my Active B12 level was above 25 pmol/l , my MMA test was High and has provided me with a diagnosis of "functional B12 deficiency/insufficiency at tissue level"; I did pay for the additional MMA and tHCY test following Neil's advice/story! But members should be advised that as of September 2012 GSTS have changed their reference intervals for the Active B12 test to the following ranges:

<25 pmol/L = vitamin B12 deficient
25 to 70 pmol = "grey area" = samples are referred for confirmatory MMA analysis (previously this was 25 to 35 pmol)
>70 pmol/L = vitamin B12 replete

So previous members who solely undertook the Active B12 test prior to Sept 2012 and had a result over 35 (under 70) would not have benefited from the MMA test! It would be interesting to see how many members who have an Active B12 test result between 25 and 70 pmol, subsequently get diagnosed with B12 deficiency as a result of the additional MMA test - it may suggest that the Active B12 test result should be raised to above the present 25 pmol/L.

P.S. As the test went to my GP I was initially advised that all the tests were OK (negative) it was only when I insisted on getting a copy of the actual test results from the GSTS labs that the GP acknowledged that my MMA test was High and that GSTS had actually provided a diagnosis of B12 deficiency! So PLEASE ensure you insist on getting a copy of the GSTS tests results if you undertake these tests as we unfortunately can't trust our GP's to provide the correct results/diagnosis. I am still waiting for my GP practice to advise me what treatment /referral they intend to action following these results!!

Rgds, Pepper1

[AndreaM]

Hi Pepper,

Thank you so much for this extra information. I wonder what prompted the change in reference range. Maybe it was the fact that quite a few of these patients presented with high MMA levels when tested, despite being within the previous normal range.

It is also disgusting that any doctor would tell their patient that the test had revealed a normal level when that wasn't the case at all. That is surely a disciplinary matter!

Andrea

[JDee]

Hi Pepper.

Yes thanks for the update. I suppose it is still relatively early days for GSTS and this test so expect a few changes along the way.

P.S. As the test went to my GP I was initially advised that all the tests were OK (negative) it was only when I insisted on getting a copy of the actual test results from the GSTS labs that the GP acknowledged that my MMA test was High and that GSTS had actually provided a diagnosis of B12 deficiency! So PLEASE ensure you insist on getting a copy of the GSTS tests results if you undertake these tests as we unfortunately can't trust our GP's to provide the correct results/diagnosis. I am still waiting for my GP practice to advise me what treatment /referral they intend to action following these results!!

And still this goes on!!!! Diabolical

By the way - what was your Homocysteine result?

Jac