Thought I would post an update since the last time i posted on here.
I have had my B12 results back and they were 127 ng/ml for B12 and 3.4 ng/ml for the Folate?
So low on the B12 and I think borderline on the folate. The doctor's made me wait two weeks for what I thought was a second B12 test. it wasn't.
I went for the second blood test this week to be told they were testing for Intrinsic Factor Antibodies. I'm still not clear on why I had to wait two weeks for this but hey ho.
I got the results of this test today and it has come back negative. My levels are 0.97 u/ml and the range they tested against was 0 - 1.19
In all honesty I'm not sure what all this means, and I'm hoping my doctor (who i've not seen before) will be able to shed some light on this.
I don't understand why my levels would be low as I eat a varied diet with red meat at least twice a week and I don't shy away from greens. So why would it be low?
From my understanding this probably means i don't have PA which is good news! But if it's not that what is it that's bringing the levels down.....
Sorry for the moan and 20 questions, I think it just clears things up in my head when it's written down.
Fingers crossed I can start some form of treatment tomorrow be it tablets or injections, the tiredness, numbness and forgetfulness is getting to me. I used to be fairly fit but the thought of any sort of running now fills me with dread and I'd like to get back to it someday.
Written by
Somberlain
To view profiles and participate in discussions please or .
a) B12 deficiency is either caused by lack of B12 in diet or it is caused by an absorption problem
b) PA is one potential absorption problem - there are lots of others including low stomach acid, gastric surgery affecting the ileum, genetic abnormalities affecting the ileum and drug interactions (including a lot of drugs unwittingly used to treat early indicators of a developing B12 problem eg acid reflux, susceptibility to pain)
c) I can't really comment on what is the cause of the folate deficiency - it's not just vegetables but also fruit - some fruit and veg is better than others so it may be a question of which vegetables you are eating.
Another possibility would be a problem with methylation - various genetic variations can lead to problems absorbing both folate and B12 but the effect and severity depends on exactly which genes are involved.
d) a lot of doctors are pretty hopeless when it comes to actually understanding what B12D is, the causes etc. You have clear symptoms of neurological involvment (numbness) so they really shouldn't be delaying the start of treatment - as left unchecked the damage that is leading to these symptoms can become irreversible ... but back to most doctors being pretty hopeless
BCSH guidelines may be of some use - refer to summary on p2 and treatment regime on p8
e) the body needs folate to absorb and use B12 so if folate is low that will also impact on your ability to use B12
f) the IFA test is at best 50% accurate, so doesn't really rule out PA as a cause of the underlying deficiency which is obviously what they are trying to get to.
HOWEVER - back to d) and the BCSH guidelines - you obviously have a deficiency at present and you need to be treated NOW.
You need to be treated for both B12 and folate - there was an ambiguous recommendation in the past about not treating folate if B12 looked like an issue but think it has now been clarified that this doesn't apply if both folate and B12 are deficient and your folate is so close that it will quickly become deficient if both aren't addressed.
The burden of proof should really be on proving that dietary deficiency is a problem ... and given what you say it would be pretty difficult to demonstrate that. In which case the treatment should be injections as the cause is obviously malabsorption.
Having said that though red meat isn't actually the most accessible dietary form of B12 - dairy and fish are better.
Wow, thanks again gambit. I'm going to be as prepared as I can be for tomorrow. I've not had a good experience with my GP's since all of this started and I rarely get to the same one twice.
Hopefully the guy I see tomorrow will be open to the points I'm going to raise based on the information in the guidelines. But I fear he will close his ears as "he knows best". It's hard not judge before I go as this has been the attitude so far. I'd be surprised if he doesn't want to prescribe anti depressants as that seems to be their answer for everything lately!
I'll see what tomorrow brings and if it goes the way I expect I think i'll change GP to another surgery and see how I fare there. Last option I guess is to go private again.
Unfortunately it is likely to be as you expect - but here's hoping that the GP is prepared to listen, or even one of those rare beasts that actually knows something about B12.
Actually your last option is treating yourself - you can get hold of injectible B12 from Germany - or you can even see if another method of supplementation works for you - nasal is pretty good for me but I also do the occasional injection subQ
Some have gone private and it can be the same story there in terms of doctors not listening.
Good luck with your GP appt. In the past I have rung the PAS. If you leave a message they will get back to you. You don't have to be a member to ring them. The library section on the website has a summary of the BCSH guidelines that Gambit mentions.
There are other blood tests that can help to diagnose a B12 deficiency eg MMA, Homocysteine and Active B12. The results of these are likely to be compromised if a person is already supplementing with B12.
Have you had a ferritin test? Good levels of iron and folate are needed to maximise uptake of B12.
Have you had a FBC (Full Blood Count)? There can be useful clues in the FBC. High MCH and high MCV can indicate the possibility of a macrocytic anaemia. Low MCV can indicate the possibility of a microcytic anaemia.
Well I had the appointment, doctor has told me I've not got PA, I did tell him that the test for IFA might not be accurate and he agreed, but didn't seem to be that bothered.
They have started me on loading doses, but were really pushing for me to take tablets, In the end they have agreed to load me with injections. To make things more complicated I go on holiday this Thursday so can only get 3 shots in. I think it will have to be tablets after this.
I asked the doctor I saw today whether I would need these for life now but he didn't seem to think I would. he said they would test again in 3 months and decide then. I guess when I go back after holiday I'll have to bring the guidelines with me as they say I should be treated as IFA Negative PA (If I show improvement with the loading so time will tell).
I see another doctor on Monday so I'll ask him the same thing just to see if there is a disparity between them.
Either way, I had my first dose today, the injection whilst not painful I was surprised at the size of the needle, that was big!!!
Obviously I don't feel any different yet, still numb hands and tired legs. But it's early days, I'm getting treatment so I'm just happy that's started now.
I'll be sure to keep you updated with my progress, if anything it helps me remember what I've done so far on this journey, my memory is shocking at the moment
I'm not sure why they seem a bit hesitant about giving you injections. Your B12 is low and you have numbness which suggests neurological symptoms.
Has your GP checked their copy of the BNF (British national formulary)? The info is in Chapter 9 Section 1.2.
My understanding is that someone with B12 deficiency and neuro symptoms should receive an injection every two days until they stop improving (this may mean loading doses over a period of weeks or even months not just over a week!). After this they should have an injection every two months.
They have told you to come back after three months. This does not seem to follow the BNF treatment for B12 defic with neuro symptoms. I think the PAS might be interested in hearing your story and also that they wanted to use tablets rather than injections. Contact details in my post above. It may take a day or two for them to get back to you.
Do they think your b12 defic is diet related? Are you vegetarian or vegan? If you have b12 defic with neuro symptoms there is likely to be a small window of opportunity to put things right before damage becomes permanent. In my case, I believe I have some permanent peripheral nerve damage.
I always emphasise my neuro symptoms when I speak to a GP.
I gave a copy of this PAS list to my GP and ticked all the symptoms I had.
Some people, myself included, are unable to get a diagnosis or if they get a diagnosis may not get adequate treatment and are driven to self-treat. For me it was a last resort but has stopped my deterioration.
Martyn Hooper is the chair of the PAS. If you look at his blog and scroll down you should find examples of people he has helped.
It's not diet related, I've made it very clear I eat plenty of dairy, red meat and other sources of B vitamins.
I did say to the Doctor why do you want me to take tablets when I should be getting all of this through my diet, He pointed out that I am IFA negative. I guess that I am, on paper, able to process ingested sources of B12.
I'm going to give the PAS a call tomorrow and hopefully can get to speak to someone before I go away.
I'm all for letting the NHS try and fix this, but they just seem to be working to a rule book at the moment.
Maybe the 3rd GP at my practice I see will have a different view to the others, All it needs I think is someone to take it a bit more seriously and I'll be in with a chance of fighting this without having to self medicate.
Thanks again to everyone on here that has given me advice and guidance so far. It's really appreciated!
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.
Yey i love doctors ... NOT!
Doctors in the morning! 
6 loading B12 jabs then go back in a year...
MMA Testing; B12 Side Effects
Doctors appointment 
