....and as I feared they appear to be normal.
B12 - 605
Folate - 11.2
Intrinsic factor is not back yet.
I'm booked in to see a different doctor to my usual one ( who doesn't take me seriously ) next Tuesday, but not sure what she'll say. I'm having Neuro symptoms, ( visual problems, muscle weakness and numb thumbs and big toes. ) Should I be insisting on treatment with injections or try ip under tongue medication first ?
Are you on any kind of supplementation already?
I've been taking something by vita biotics for the past 6 weeks or so.....it contains 10 ug B12....... Not sure if that skewed the result. Also my diet is very high in green veggies as I love them. Just trying to get my head round why the B12 test is not considered that accurate ..... Does anyone know the reason ?
Is it Feroglobin?
I haven't got the link to it but there was a study (recently) done that showed 5mcg of b12 daily for 30 days could push b12 levels up by 50ng. It is likely that the supplement has raised your levels.
The b12 test isn't accurate for numerous reasons
- the type of b12 it measures
- the levels which are set to reverse the blood problems but not the neurological
- And the fact it's an accute phase reactant -which means the level is falsely elevated if you are stressed.
In your position, I'd print off the new article in the BMJ - go back and explain that you want further tests.
It's difficult because it is a middle level range and if you start trying to explain the above the doctor will just smirk at you.
You can go for other tests but they too will have been affected by the supplement.
Doctors are liable if their patients get injured. Put the information in front of them and see if they check further.
My guess is the BMJ article, IF it makes it into the print edition will change things quicker than anything. It only takes one dr in a practice to note that things could get sticky if they don't upgrade skills for the whole system to change.
Hi.
Can you explain re doctor liability if patients get injured? Thanks.
Individual clinicians have a duty of care to their patient. In fact there are numerous duties that Drs must make all efforts not to breach otherwise they could be considered negligent. Negligence in itself is, despite how we might view it, not a particular problem for a doctor. For example, they prescribed paracetamol and it is down on your records that you have allergic reactions to this BUT you notice before you take it and return it. Your GP simply says sorry. They may have been negligent but there is no harm caused.
Another duty relates to that of upgrading skills and knowledge. Doctors can't simply rely on what they learn in medical school - things change. They must constantly keep themselves up to date with medical advancements. If they don't and they diagnose and/or treat a patient in a way that causes harm to the patient - then they can be held liable for that harm.
So, you have the act of negligence - not keeping skills and knowledge up to date and the act of causation - harm resulting from that negligence.
There is a heck of a lot more to it, but the fact remains is that when you sit in front of a doctor they have the responsibility to practice in a way that does you no harm. For the most part, as b12 patients are aware, doctors rarely have to confront this responsibility - and rarely do they see the need to upgrade their skills simply because we put information in front of them. But if their peers put information in front of them...different matter. They have to look. And if a patient is harmed because they didn't look, then they take responsibility for that.
I see. This probably explains doctors reluctance to treat diseases that they're not trained to deal with.
Not sure if this is true, but have read somewhere that current GP's medical knowledge is so far behind the curve of medicine (estimated at 30-years). Sounds like my GP!
Thank you for the reply.
The issue is that they should be self-training - they should be updating their own skills and knowledge.
But you're quite right, everything is outdated. The last guidelines from the haemo bods were produced in 1990. And they were only updated this year (and it's taken them 2 or 3 years to do that, so they are already behind) Yet doctors have been referring to those guidelines from 1990 up until recently. So you can see that as individuals the responsibility has to lie with them to keep up to date irrespective of guidelines.
You need to see a neurologist to find out what is causing your neurological problems and to exclude other potential harmful issues is what I think would be safest, Marre.
In my experience, Marre, - and I know yours was a little different - they will not send her to a neurologist until they find a suspected 'cause.' A physical cause.
It's cyanocobalamin in the Vitabiotics......
I'll see how sympathetic / knowledgable the GP is next week 
Focus on the knowledgeable rather than sympathetic.
Take it in, even just the abstract. Tell her you've got a friend whose a nurse and she pointed you in the direction of it. Ask her what is going on since you clearly come into the categories mentioned in the research so why aren't you getting these problems investigated further.
Does anyone have a link to the new guidelines ?
I've not got a link to the new guidelines but it's not the guidelines I'm talking about - it's the recent article in the British Medical Journal - I don't know if that's what you want? It's the one that says patients can still be suffering neuro damage when their levels are above deficient.
link to BMJ article is
it was a post a few days ago but site has been pretty active since
latest guidelines can be found
Are you a member of the PAS - there were some good articles on doctors updating their skills and being more aware of the new guidelines in the September newsletter
New Guidelines Start to Work
As we reported in the last
newsleıer the new guidelines on
Cobalamin and Folate Deficiency
(B12 and Folic Acid) have been
published by the Briısh
Commiıee for Standards in
Haematology.
These guidelines are an
enormous step forward in that
they acknowledge, for the first
ıme, that there are serious
problems with the current test
used to determine B12 Deficiency.
Although there are sıll issues
that need to be addressed,
and they make no
recommendaıon on treatment
they are, hopefully, the first step
towards the issues surrounding
diagnosis being addressed. And
we can report one posiıve
outcome.
One member, who lives in
Gloucestershire has been
complaining of a whole raı of
symptoms of B12 Deficiency for
years but, because her serum B12
levels were above the threshold
to determine deficiency she was
refused treatment. She
recently telephone the office;
“My doctor has just telephoned
me to tell me that she has just
returned from a training session
on the new guidelines. She
apologised and told me that the
new guidelines tell GPs to treat
paıents who have the symptoms
even if their test results are above
the threshold that shows a
deficiency.
“She told me to come straight to
the health centre where she
would immediately give me an
injecıon”.
Yes, Gambit, but what happens then? After that injection - the guidelines are terrible. They have actually reduced the period people should get intensive b12 injections for. So people are still going to get sick again after their diagnosis because their b12 levels are normal. We see it all the time. People get diagnosed when their b12 levels are in the deficient range and then cannot get remaining symptoms acknowledged. Now they can't even put the guidelines under their nose to say they need injections until symptoms stop improving.
People are working on getting treatment to be matched more to patient needs - see post I put up a day or so ago on campaign results.
Yes, we can all sit at the bottom of a mountain and be depressed by how tall it is but sometimes i think you have to celebrate and promote the victories you have had ... and actually make GPs more aware that there are new guidelines in the first place.
If it was the post from Martyn's blog I did see - but that is just heresay.
The only horse's mouth I've seen is relating to the person who said yesterday that doctors were getting new instructions relative to the BMJ article - and they didn't come back with more info!
It's not a case of being depressed at the bottom of a mountain - people are dying. The haemo bods have just reduced treatment - no other way round it. It's not something to celebrate or be distracted from because they did one good thing. How difficult now do you think it will be for people to get less than 3 monthly jabs - it's going to be a bigger nightmare than before.
I think I quoted an MD from back in the 1950s in another thread who said, something like, "it really is no kindness to cure a patient of anaemia and then let them die of spinal cord injury."
He was talking about giving people enough treatment - and he knew the original patients.
So why is it okay now to sit and wait?
Actually Gambit I think I got it wrong in that you were talking about something different - I don't think I saw campaign results.
The fact remains is, the new guidelines, for those diagnosed are rubbish.
This is the update I was referring to
change.org/p/ian-hudson-ple...
The update and campaign relate to making B12 over the counter rather than prescription only and there does seem to be a positive way forward on that now.
Never saw it. Sorry for the misunderstanding.
I don't have any objection to OTC, but I still think that patients shouldn't be managing a neuro illness on their own.
Don't get me wrong, I hope the campaign gets somewhere, but the ignorance and myth surrounding this illness by medical professionals has got to cease - and quickly.
You know as well as I do, that most people won't even go for OTC if their doctor tells them their levels are okay.
Honestly, I just think it's an abhorrent mess out there. Words sometimes fail me.
Something else is happening...... I jumped on the scales this morning and I've lost 3 lbs since I saw the nurse about my issues on Tuesday..... That might not sound like a lot, but I had already lost around 6 lbs in the previous month. I was tiny to start with, but now at 6 St 9 lbs my ribs are starting to show :/
Seeing the doctor this coming Tuesday...... Can it wait till then ?
Your body weight can vary quite a lot during the course of the day. It is likely to be at it's lowest first thing in the morning when you haven't had anything to eat or drink for several hours. Try not to panic about it -I know that B12 deficiency can make that really difficult.
It is probably worth mentioning the weight loss when you see the doctor as it may indicate that there is something else going on that may be the reason why you are having problems absorbing B12 as well.
The more I read the more things make sense....... My pottasium was low last time I had some bloods done through casualty ( had blurred vision which I see can also be a problem ). Have always been 7 St 4 lbs all my adult life, so to lose 9 lbs in the last month is definitely not right !
I think you've falsely elevated your b12 levels with the supplement. Blurred vision is a big problem for many people.
I found that thin people get little understanding for weight loss - you usually get tagged with an eating disorder. Yet it's actually more scary because you haven't got that far to fall before you end up in big trouble.
I know you'll be going tomorrow so it will be interesting to see if the neuro tags you will some kind of physical or psychological disorder. If they run with the b12 problem I'll be surprised but maybe the BMJ article has smartened them up a little?
Got my test results back. B12 >2000
Results
Back on the injections again
Symptoms are creeping back
I'm back, not a happy bunny!!!!!
