Hi , my son has had recent bloods taken his b12 is deficient.
34.5- range 37.5-188
We have requested a Gp appointment but have now waited almost 3 weeks, I feel this needs an urgent appointment as he is symptomatic and now back at uni.
Is there any evidence/ research I can quote to them regarding the importance of quick diagnosis and treatment?
Thanks
It depends on their level of interest but there are several illustrative case studies which show the possible consequences of lack of, or inadequate treatment in the often cited "The Many Faces Of Cobalamin (Vitamin B12) Deficiency"paper.
ncbi.nlm.nih.gov/pmc/articl...
Perfect…Thankyou so much. They can’t argue with research
Many GP's are time-poor and may not make time to read research. It might be an idea to excerpt or summarize some features of the cases on paper or in a note for the GP as they may demur reading a full paper (unfortunately). Otherwise I can see them waving you off.
Ah right yes of course that makes sense. I’ll summarise the main points I want to get across and hope it’s educating in some way and gets us an appointment sooner rather than later!
Your input is very Much appreciated
I wonder since he hasn't been treated for B12d/PA yet, if this would be a good time to do other tests like IFAB and see a gastro before ever taking B12. Some tests are B12 sensitive and can muddy the waters on results. The IFAB test will tell if he has intrinsic factor. If that comes back positive he can't absorb b12. So since he has no b12 in his system, now is a good time to test for other deficiencies. Like iron, D3, folate, potassium, and the Intrinsic factor test. If they want to treat him without theses other test, it can be problematic later on with doctors refusing to believe he has B12d or PA . These tests will prove things and make it so they can't dispute his diagnosis. But if given injections, doctors will be able to say the B12 made the tests unreliable. It happened to me and it happens to many of us. So before treatment, I would insist on these other tests. Good luck.
Could the university health service help?Get him to request a copy of his recent results.
It will state type of test snd measurement used.
It should also state below range .
He could perhaps get a telephone consult?
Good idea with involving the uni, my son has special needs too so it may be worth involving sendco.
He has a copy of his results , it was an active b12 test.
The Gp receptionist told me it’s not classed as urgent I don’t know what she bases that on and he will receive an appointment with one becomes available! It’s a case of how long is a piece of string
Thank you for your reply it’s appreciated
I'm amazed an active B12 on the NHS .Most are serum b12 tests .
Hope he gets advice very soon.
And treatment.
There are a number of bits of the NHS which either do Active B12, or can do it, or are investigating/discussing it.
This is a list of some:
Holotranscobalamin (Active B12)
NNUH, QEH, JPUH
easternpathologyalliance.nh...
2019/131: Treatment of Vitamin B12 Deficiency Draft – A pathway is currently being developed with Jane Oakey from Path Lab who is exploring options re. active B12 testing in the lab. LR to obtain update on progress.
elmmb.nhs.uk/_resources/ass...
If B12 <200 ng/l or active B12 <70 pmol/L - prescribe Hydroxycobalamin 1mg IM 3 times a week for 2 weeks
spah.scot.nhs.uk/wp-content...
Following MHRA advice that vitamin B12 deficiency is now a common side-effect in people on metformin treatment, it is advisable to check vitamin B12 levels (and active B12 if total less than 200) at pre-conception counselling or antenatal booking in all high risk patients:
swlimo.southwestlondon.icb....
B12 (& Folate) SFOL Chem Auto 3 days 8,9
9 Abbott Laboratories, Active-B12 (Holotranscobalamin) for use with Architect REF 3P24-25, October 2015
easternpathologyalliance.nh...
Active B12 5ml Clotted Only indicated if patient has symptoms of B12 deficiency and total B12 not low. MMA will be reflexed on borderline active B12 results.
Sent to St Thomas’ Hospital
uhcw.nhs.uk/download/client...
Holo-Transcobalamin
Alias: Holo-TC, Active B12, HTC
I read somewhere that the NHS does active B12 tests but that you have to pay for them.
I contacted a part of the NHS/politicians to ask if it would be possible to add tests which NHS say are unnecessary, but some patients want, by paying a charge.
After all, Monitor My Health offer many private tests despite being an NHS lab. Including Active B12. Can imagine having a serum B12 test done by Exeter NHS lab and paying a few pounds to add Active B12.
The reply I got said that they would not legally be allowed to make a charge like that. Therefore, no chance.
Maybe other parts of the NHS look at things differently?
Many physicians (and their offices) don't believe B12 deficiency is urgent because, according to "The Many Faces of Cobalamin (Vitamin B12) Deficiency", medical schools have for generations taught that B12 deficiency is always accompanied by enlarged red blood cells, an interpretation that focuses on blood symptoms, which are less urgent, and ignores degeneration of nerves, which is more urgent, especially when the degenerating nerves comprise the spinal cord.
I wish you all the best . But I want to warn you that some GPs will not accept private blood tests , and insist on NHS ones . Some GPs will not prescribe the active B12 blood test , and only prescribe the old blood serum test , which we all know to our cost ( health cost of course !) can give a result that can contain up to 80 % of inactive B12 . Just want you to be prepared for every eventuality. Good luck 🍀🍀🍀
Thankyou, I had not thought for one minute they would not accept the private bloods. We do private cause the nhs labs only do TSH on thyroid bloods and more detail is needed.
Fore warned is fore armed. Maybe that is why they are dragging their feet over the appointment.
Gosh it’s always such a battle!
Your advice and support is much appreciated
I'm not sure if the reason is they cant prescribe from a private test .Or its up to their own judgement .?
They could prescribe on symptoms only but I bet will want a serum b12 and possibly an Iintrinsic factor antibody test before b12 injections.
Or advocate trying oral b12 .
Before starting oral b12 hopefully a serum b12 can be done at uni health care. This will include s folate level too.
Adding another factor once again, from "The Many Faces of Cobalamin Vitamin B12 Deficiency", for B12 deficiency patients with neurological symptoms, blood tests can be within the reference range and therefore not helpful, which means B12 deficiency is a clinical diagnosis. If symptoms point toward B12 deficiency, and there is no other diagnosis supported by evidence, the article authors say a trial period of B12 injections, evert other day or twice a week, certainly no less than once a week, for 3 months: if symptoms improve, that validates the diagnosis of B12 deficiency.
A word of warning - just a couple of years ago a gp at the practice I attend disputed there was even such a thing as an active b12 test! Astonishing.
My oncologist could not find any lab available to her to do an active B12 test. She had never heard of it. I requested it and couldn't get one here. She doesn't think anyone in the US does it.
Here is a test kit. Its not cheap though and says its "for research use only".
lsbio.com/elisakits/human-h...
Thanks.,Technoid. I believe I did look it up once and it was quite expensive. I'm good with tests. I'm all tested out. Lololol🤗
Hi Blister
I fully sympathise with your concern as also a parent of a child who was once SEN too and is also now at uni.
Does your child live at home? Do you know a reason for his low B12 deficiency?
Depending where you are you could go to a private specialist and they will liaise with GP That’s what I did and GP prescribed vitamins (D, iron folate etc) but not B12 as I need more than GP will prescribe
I will message you privately. Your son is lucky to have a parent like you
🤗🤗🤗🤗🤗
Thanks for mentioning folate testing. It is essential to test folate along with B12, and if both folate and B12 are deficient, then it is necessary to treat them in the correct order (I don't remember which one should be treated first).
I was treated incorrectly by GP as only B12 given even though folate was deficient (borderline issue again).
However, the consultant treated folate at the same time as B12 with a high dose 5mg tablet at same time as injections.
🤗🤗🤗
Hi, Just a thought...is it possible to source GP appointment via Uni health service?Good luck
Dylfan
I have the same issue. My active is 35 with the same range. I get this tested privately. It has always been in the ‘grey’ area (under 70) and been dropping year on year. GP refuses to acknowledge private test and just says my serum B12 is in range going by their bloods. Sooo frustrating.. Do t know why I bother to get tested privately as GP’s just won’t recognise.!I have an autoimmune thyroid condition and a HUGE family history of pernicious anaemia. I wish you luck!!!
Six months of b12 deficiency may cause permanent nerve damage. You don't know how long he's been deficient, so of course it's urgent. The sooner he's treated with injections, the better. Waiting will increase the risk.
This page from the Pernicious Anemia Society describes factors pertaining to diagnosis; some of this might be helpful as you talk with your GP:
All your comments and support are very much appreciated. You have made some great suggestions.
You have given me the strength to push this on.
Good luck to you all and hallelujah for support forums like this one x
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