frustrated with Gp.: Hi , my son has... - Pernicious Anaemi...

Pernicious Anaemia Society

32,679 members24,077 posts

frustrated with Gp.

Blister4 profile image
38 Replies

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

Written by
Blister4 profile image
Blister4
To view profiles and participate in discussions please or .
Read more about...
38 Replies
Technoid profile image
Technoid

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...

Blister4 profile image
Blister4 in reply toTechnoid

Perfect…Thankyou so much. They can’t argue with research

Technoid profile image
Technoid in reply toBlister4

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.

Blister4 profile image
Blister4 in reply toTechnoid

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

Technoid profile image
Technoid in reply toBlister4

best of luck

EllaNore profile image
EllaNore in reply toBlister4

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.

WiscGuy profile image
WiscGuy in reply toEllaNore

Just a quick comment on the Intrinsic Factor Antibody Test (IFAB): the test *might* determine whether antibodies have attacked intrinsic factor; about 50% of negative results are false negatives.

EllaNore profile image
EllaNore in reply toWiscGuy

Right. thanks for clarifying that.

Nackapan profile image
Nackapan

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?

Blister4 profile image
Blister4 in reply toNackapan

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

Nackapan profile image
Nackapan in reply toBlister4

I'm amazed an active B12 on the NHS .Most are serum b12 tests .

Hope he gets advice very soon.

And treatment.

Blister4 profile image
Blister4 in reply toNackapan

Oh yes, it was a private test!

And Thankyou for your support

helvella profile image
helvella in reply toNackapan

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

pathology.royalcornwallhosp...

tomdickharry profile image
tomdickharry in reply toNackapan

I read somewhere that the NHS does active B12 tests but that you have to pay for them.

helvella profile image
helvella in reply totomdickharry

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?

WiscGuy profile image
WiscGuy in reply toBlister4

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.

Nackapan profile image
Nackapan in reply toWiscGuy

I agree .Recently wax told by the district nurse team b12 is low priority .

Despite an HCA able and does give it.

Have to chase my elderly mums frequently

Prescription is fof 8 weekly.

Challenged 3 times of doing them at all !!

wedgewood profile image
wedgewood

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 🍀🍀🍀

Blister4 profile image
Blister4

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

Nackapan profile image
Nackapan in reply toBlister4

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.

WiscGuy profile image
WiscGuy in reply toNackapan

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.

Nackapan profile image
Nackapan in reply toWiscGuy

Yes

MorningMist profile image
MorningMist in reply toBlister4

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.

EllaNore profile image
EllaNore in reply toMorningMist

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.

Technoid profile image
Technoid in reply toEllaNore

Here is a test kit. Its not cheap though and says its "for research use only".

lsbio.com/elisakits/human-h...

EllaNore profile image
EllaNore in reply toTechnoid

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🤗

Technoid profile image
Technoid in reply toEllaNore

yeah this seems like its for the use of lab chemists anyway, not a $40 finger prick test.

EllaNore profile image
EllaNore in reply toTechnoid

Thank you though. Maybe someone else will need their services. 🤗

Wwwdot profile image
Wwwdot

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

🤗🤗🤗🤗🤗

WiscGuy profile image
WiscGuy in reply toWwwdot

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).

Wwwdot profile image
Wwwdot in reply toWiscGuy

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.

🤗🤗🤗

Nackapan profile image
Nackapan in reply toWiscGuy

B12 first

Organon profile image
Organon

Hi, Just a thought...is it possible to source GP appointment via Uni health service?Good luck

Dylfan

Pomart profile image
Pomart

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!!!

palmier profile image
palmier

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.

WiscGuy profile image
WiscGuy

This page from the Pernicious Anemia Society describes factors pertaining to diagnosis; some of this might be helpful as you talk with your GP:

pernicious-anaemia-society....

WiscGuy profile image
WiscGuy in reply toWiscGuy

Poke around on the Pernicious Anemia Society (PAS) website for the page on testing. Maybe the problem in finding the test for active B12 is that the test is not actually called "active B12 test".

Blister4 profile image
Blister4

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

Not what you're looking for?

You may also like...

Frustrated.....

I posted on here 3 months ago how at 10 weeks my PA/B12 symtoms get worse, but docs will not inject...
Brownie49 profile image

Frustrated!

I’m so frustrated, I had B12 levels of 179 and was given the 6 injection loading dose at the end of...
Yogijo profile image

Phoney GP

I had a telephone appointment on Monday morning supposedly with my allotted GP, who I have had...
Mannequin18 profile image

Help with GP

So this is a long story, but I've been looking in here for a few years and you all seem so kind and...
Lee_A profile image

Hassles With GP Receptionist over B12 Jab

I just wondered if anyone else experienced this. I used to get a B12 jab every 3 months but this...

Moderation team

See all
Foggyme profile image
FoggymeAdministrator
Gambit62 profile image
Gambit62Administrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.