I have had a phone call today, telling me that I have this condition. I have to repeat the blood test tomorrow (for levels?) and start a course of 6 initial jabs over two weeks as soon as that is back. It does explain so much re the symptoms I have been having for a long time. In past years I have often been told that my red blood cells are large, but B12 and folate tests were "ok" so it was "just the way I am". But this time the levels are clearly not okay. My sister had this condition (she passed away years ago - other causes!), so it is in the family ..... I'm really hoping that the jabs make me feel a lot better
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Not sure why they would insist on redoing blood tests - possible that they may be doing a test for IFAB to confirm PA as the cause of a B12 deficiency but if that comes back negative it won't prove that you don't have PA as it isn't a very sensitive test and tends to give false negatives about 50% of the time - though a positive would be good evidence that you do have PA. If it does come back negative and they try to say you don't have PA come back and we'll give you some references to quote on this.Please be aware that you may feel a little worse before you start feeling better and if you have any neurological symptoms - eg tingling in hands and feet - please mention this as it should prompt a more aggressive treatment regime - with loading shots continuing until you stop having any improvement in symptoms.
Please also note that you shouldn't need future blood tests post your loading injections - can give you references for that as well if your GP tries to base your treatment on serum B12 levels.
HiI've just checked and it is an IFA test they are doing now and jabs are not to be booked until that comes back. So you think it's possible that could come back as a false negative, prompting them NOT to give me the jabs? I'm a little confused now as I thought the B12 and Folate test that I've just had was conclusive?
Some guidelines do recommend doing IFAB to check if PA is the cause of a B12 deficiency - its good to have the test as there are other consequences of PA that they can then monitor for. The test for IFAB needs to be done before the loading shots start because they can interfere with the result but, unless there is strong evidence that your problem is dietary related you shouldn't have to wait until you have the results before starting the loading shots - particularly if you have neurological symptoms.The BCSH guidelines which can be found here, refer to IFAB-negative PA because of the limitations of the IFAB test and also give a good account of the limitations of both that test and serum B12 post loading shots.
Did your GP discuss diet with you? to rule out dietary deficiency as the cause - B12 is only found in animal products or fortified food but the amounts you need is very small
PA is the most likely cause. Suggest you ask how long the results will take to come back and if it is more than a day or so query the delay in starting treatment. If you have neurologocial symptoms then the initial treatment should be loading shots regardless of whether to cause is dietary or not according to NICE guildelines
Hi, I just cleared that up, thank you. Dr's note saying I had to have test before starting jabs was interpreted wrongly, by the person who called me, she thought I had to wait for the results before starting them. The person I just spoke to says I have to have the jabs whatever the result of the IFA, so as soon as I've had the blood test I can book the loading shots. Dietary issues - I do have gastro issues, one being lack of gall bladder, I was born without one, so any of the gastric probs could maybe exacerbate the PA, or, from the symptoms I've now read up on, maybe some of the gastric probs are actually caused by the PA - it's all very confusing!
That would be interesting to know, as I have had just about every gastric test going over the past year, and PA was never even considered, of course. Thank you for all your help. It's really good to know there's support here 🙂
Just to add to what Gambit says…some doctors think that treatment for PA is not needed until B12 levels drop below the 'normal' reference range. That is nonsense.
Hope that not the case for you, but if your GP tries to suggest that you don't need B12 injections until your serum B12 drops to below the reference range…ask why since that is inevitably what will happen, you already have symptoms, and these should be treated… irrespective of current B12 level.
Come back for more advice on this, if needed.
And sorry about your diagnosis - it’s a lot to take in, especially if you’re feeling dreadful too. Lots of lovely knowledgable members here to support you so do keep posting and asking questions.
I've been feeling rough for quite a while, so this is double edged news - it's good to get the problem identified, but not so good to hear what it is - and thank you
Hi I have booked the 6 loading doses - and they are at three different surgeries in the practice! They don't start until 8th September as they have no appointments before then. I asked the receptionist to check with the GP to make sure it is okay to leave for two weeks and the answer from the GP, through her, was "it will take months for this to affect you with symptoms, and several years for it to cause anaemia". As I already have symptoms, and my fbc blood tests from two years back were "borderline" (why wasn't B12 checked then?), and my B12 level number now looks pretty low to me, I'm not too happy with this response. An IFA blood test is booked for tomorrow now, though why they are sending me for that if it could "take years" is beyond me. I am changing docs as soon as the loading doses are done as I don't want to confuse the issue at this point, but I have totally lost confidence now.
Pleased that you've at least got the loading doses emmjay - though your doctors attitude and level of knowledge leaves a lot to be desired! Sounds like a surgery change is a very good idea.
Here’s some brief comments and links to information that might help you… especially if you have neurological symptoms. If you do then the first thing is that the guidelines state that these should be treated immediately.
The first link states that clinical findings take precedent over serum B12 levels and if symptoms of B12 deficiency are present treatment should start immediately - even if B12 levels are in the so-called 'normal' reference range - to prevent progressive neurological degeneration and the potential development of subacute combined degeneration of the spinal cord.
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
If you have neurological symptoms, your B12 injections should continue every other day after the loading doses, until symptoms are no longer improving (many moths or longer, for some). It's the third or fourth paragraph down - you may have to point it out to your GP (they will have a copy of the BNF on their desk - it’s the treatment guidelines they’re supposed to follow so no excuse for ignoring it (once they realise it’s there).
Some GP's balk at the intensive treatment regime on the false notion that B12 is addictive, dangerous, should be stopped if your levels get to high - all ridiculous. Here's something from the respected B12 research institute in the Netherlands (they also engage in research with the PAS). It also speaks to the importance of the intensive regime of injections for those with neurological symptoms (needed for effective neurological repair).
Also worth noting that if you don’t need the intensive regime of B12 treatment, after the loading doses the BNF states maintenance doses every 2-3 month (recently changed to possible for two month injections - some GP's aren't aware of that). Even two monthly is not enough for some people - but that’s another story so ask again if you get caught in that trap.
The following link is to the full B12 deficiency guidelines - useful for you to know and also highlights the many potential causes of B12 deficiency (including PA) and the diagnosis pathways to arrive at a sound diagnosis. Very useful if your IF test is negative and any GP tries to stop your treatment on that basis. (A negative IF test cannot rule out PA and there are many other causes of B12 deficiency too - which a good GP should want to rule out - or in.
This look like a lot of reading but excepting the full guidelines in the last link, the rest are only one or a couple of pages long.
It’s very useful to have I formation from reputable sources (as above) so that you can educate your GP and present evidence based arguments for getting and being able to continue with the right frequency of injections (as per the intensive regime for neurological symptoms).
Another conversation with your GP on the above might get you an earlier appointment - it’s not sufficient for a receptions simply to say that there aren't any appointments. If that fails you would speak to the practice manager and ask for treatment as per the guidelines - unless she can guarantee you that you will not suffer irreversible neurological damage (subacute combined degeneration of the spinal cord - SCDSC) by flouting the guidelines and delaying treatment with B12 injections (and of course nobody - even a GP - can do that). If she's not helpful, tell her you are going to put the request in writing and send it to her and the local Clinical Commissioning Group (CCG).
Of course, I'm not saying that you have or will develop SCDSC - but many medics (and medical receptionists 😬) are unaware of this and it may make them sharpen their thinking and start your treatment immediately - as they jolly well should.
It’s really shocking that patients have to go to these lengths to get the correct treatment and it might be a case of having to 'keep at them' - and you just have the courage and strength to keep going and do that.
Very best of luck and please let us know how you get on x
P.S. I don’t have time to proof read so apologies for any typos or weird autocorrect activities.
Unfortunately it is more or less impossible to get even a telephone appointment with my doctor unless it is an emergency. I am more than happy to e-mail them, but am a bit lost as to which part I am supposed to reference to try and get them to act faster? The B12 level IS showing as very low, I can see it on line, but they do not seem to be associating that with any of the symptoms I have consulted them about over the past months. I've not seen a doctor or nurse face to face for over a year (apart from blood tests). There are so many Doctors at the group practice now that I don't even have a clue who this one was, so he certainly doesn't know my history, or care. (which is why I am changing docs as soon as the loading doses are done). If you, or anyone else here, can point me at some wording that I can copy and paste to them, To try and get this moving sooner, I'd be really grateful. I'm still lost on all of this as the only info I have on it is what I have googled (!) and got from this forum, thank you
**** added **** no worries, I have put something together now and e-mailed them, thanks for the earlier links and advice.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency.
I recommend you get hold of the local B12 deficiency guidelines for your CCG/Health Board and compare them with BNF, BSH and NICE CKS links if you have time.
Some of these local guidelines are not very helpful.
Some local guidelines have been posted on this forum so may be worth searching forum posts.
Coeliac disease
Just curious as to whether you have been tested in past. Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
Thank you. I need to find out more as all I got was a call from a receptionist, telling me I had to have the jabs and the blood test. I asked was it pernicious anaemia (my sister had it, so I knew about the jabs), and was told yes, but wasn't given any info about it at all
PAS (Pernicious Anaemia Society) can provide lots of helpful info.
"I need to find out more "
I think it's a good idea to find out more. Sadly some UK GPs and specialists and nurses are not as well informed about PA and B12 deficiency as they should be.
Links below are to forum threads where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
Do you find the injection no help at all, or is it that you do, but it wears off long before the next one is due?
If you have tingling in your hands or feet, or other peripheral neuropathies, ask to be shifted to two-monthly.
If this is still not enough, or if you are refused it, there is copious information on here about self-help.
We are the still slightly bewildered, but now practised, exponents of self-administering B12, rather than falling back on the beauty salons which will do what the NHS won’t. And which, with the best will in the world, we don’t really trust, nor wish to pay for.
Heredity, no gall bladder - both predispose towards PA.
Be aware that the loading doses may make you feel worse before they make you feel better, if you have long-closed neural pathways that the B12 opens up again for you. Your poor brain won’t at first know what to do with these signals, and will interpret them as discomfort, but they will settle in time, and it will be good to have them back.
Once the loading doses are over, the key thing is how often you will need the B12 injection, and how often you will get one. 3-monthly is the default, 2-monthly if you had neuropathies (tingling hands, feet, etc).
If you find this isn’t often enough, as many of us do - monthly here, or my wife turns into a human rag doll - come back for lots of advice on self-help.
But hopefully, the NHS frequencies will be enough, and you will soon feel a good bit better.
I am in the process today of trying to change GP surgeries before I start treatment as I have no confidence in mine, and want to get this done right as it is so important.Thank you for your advice
Thanks, I have the forms filled in and popped in to the "future" surgery yesterday. The only reason I'm not putting the forms in now is because it could take a couple of weeks to process and muddy the waters with the loading doses and the IFA blood test results. As soon as the loading doses are done I will be changing over
I hope it helps her too - the depression is awful, along with the constant fatigue and many other symptoms that I can now see are related. All I needed was a Doctor that actually listened and looked at the results properly before, and was failed on this. Last night I looked back, on line, over fbc blood test results for past two years that were marked as "borderline - no further action" yet the levels were out of range then! Looking at the range of symptoms on PAS, I have so many of them. I'm so upset that nothing was done before, just a simple B12 test should have been ordered way back, I think.I can see the B12 result too, and can see it is low, but no idea what that figure means, as to how bad it is. My Doctor should be explaining it all to me but they have no interest in having contact with patients
"and many other symptoms that I can now see are related"
I was shocked when I started looking at symptoms lists and realised just how many symptoms I had that were typical of B12 deficiency. Looking at symptoms lists can be upsetting so you may want to have a supportive person with you.
Make sure GP has a list of all your symptoms especially every neurological symptom, including any affecting the spinal area.
If you do have neuro symptoms, insist politely on a referral to a neurologist.
Referrals are expensive for GP surgeries so they may be reluctant. I used to put referral requests in a brief, polite letter to GP along with evidence eg list of neuro symptoms, extracts from UK B12 documents etc. Putting it in writing makes it harder to ignore.
If neuro symptoms are present, have you been referred to a haematologist?
Again GP may be reluctant due to the expense.
If GP is reluctant to refer you could point out that NICE CKS link below recommends that GPs seek urgent specialist advice from a haematologist for patients with B12 deficiency with neuro symptoms.
If GP still won't refer, you could ask them to write to a local haematologist asking for advice on how to treat you.
I would warn you that seeing a specialist is no guarantee of better treatment as ignorance about B12 deficiency exists in some specialists as well as some GPs.
I saw several neurologists and only one raised B12 deficiency as a possibility but no firm diagnosis given., probably due to serum B12 results being normal range.
"I think.I can see the B12 result too, and can see it is low, but no idea what that figure means, as to how bad it is"
You could put the results on the forum. Take care to remove any details that could identify you or any health professional. Try to include both the actual results and the reference ranges.
If I had to sum up my advice in two sentences it would be
1) Always get access to blood test results and medical records as a health professional saying everything is normal does not always mean it is....
2) Do your homework on PA and B12 deficiency in case GP and specialists haven't.
It looks pretty low to me! My doc hasn't even spoken to me, loading dose jabs start on 8th September and I've bought some oral B12 to take until then, though I have no idea if it will help?
Some forum members have been helped by person who runs B12 Deficiency Info website.
Has GP got a list of all your symptoms especially any neuro symptoms and including any affecting spinal area?
Letter writing link below has letter templates people can base their own letters about B12 deficiency to GP on. See Point 1 if you have neuro symptoms.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
Proof a letter was received may be useful if there is a need for a formal complaint.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but keep them short.
Thank you. I have e-mailed the Doctors again (as no response to my e-mail last Thursday), pointing out that they have a duty of care, and I have now joined the PAS and e-mailed them for advice as I'm seriously concerned over the delay.Thanks again for your help
Might also be worth writing a letter to GP and posting it and maybe sending a copy to practice manager as well.
Being assertive can affect GP/patient relationship so be prepared for this.
You could draw attention in any letter to any concerns you have about risk of SACD, sub acute combined degeneration of the spinal cord and the need for prompt treatment in someone with B12 deficiency with neuro symptoms to avoid SACD and other permanent neurological damage.
Have a look in UK B12 documents I posted links to for useful quotes to include in letters.
"I have now joined the PAS and e-mailed them for advice"
I suggest you ring the PAS helpline when it is next operating....should be Monday from 8.30am. The PAS online contact form is more for general enquiries.
You will need to log in to PAS website to obtain PAS helpline number.
There may be a PAS support group in your area. I don't think they are meeting face to face during pandemic but some might meet online. The local groups can be a good source of emotional support and also which GPs are helpful.
PAS is always happy to hear from people who would like to set up new local PAS support groups and some established groups need co-ordinators.
If there are further delays to starting your loading injections, you may want to consider contacting MP, making a formal complaint about your treatment, going to the Press etc...none of these are easy and are quite likely to upset GPs.
Thank youI'm not worried about upsetting the GP as I don't have a clue who he is now, the practice has got so large, all the docs there are faceless names, and he doesn't seem to know what he is talking about anyway. Plus we are due to change surgeries once my loading doses are done. I think that trying to get my jabs done asap to protect my health far outweighs any upset a doctor may feel at being asked to do the right thing by me. I have no confidence in them. This isn't the first time they have acted badly, they have a dreadful reputation in the area for all kinds of reasons.
Thank you again for your help, I have left a message on the PAS helpline answerphone this morning.
"Plus we are due to change surgeries once my loading doses are done. ""start a course of 6 initial jabs over two weeks "
The 6 jabs over two weeks is the standard treatment pattern for B12 deficiency without any neuro symptoms.
Next time you speak to GP ask them to pick up their BNF book and read out what is says in Chapter 9 Section 1 Sub section 2 for those with "Neurological Involvement"
Have the BNF information in front of you in case GP has not got BNF book to hand.
If they are not in a listening mood then consider putting the info into a letter.
B12 loading injections for those with neuro symptoms should be every other day for as long as symptoms keep improving according to BNF. This means they could go on for weeks even months although I'm guessing some GP surgeries are unlikely to continue for this long.
A B12 ampoule is cheap...less than £2 but nurses' time to give them isn't so I feel there may be a financial pressure on some GP surgeries to limit the amount of loading injections given.
BSH Cobalamin and Folate Guidelines suggest possibility of a review of treatment after three weeks of every other day loading injections.
"I'm not worried about upsetting the GP as I don't have a clue who he is now, the practice has got so large, "
I'm so glad to hear that but take care.
I had some unpleasant experiences when I was trying to get a diagnosis and treatment.
If possible have someone with you at appointments that could be challenging.
It's my impression that GPs are kinder if a witness is present.
You could also ask permission to record appointments. GPs and other doctors are unlikely to be keen but you could argue it is necessary especially if you have cognitive issues eg memory problems, confusion, brain fog etc. You could argue that it was a reasonable adjustment under disability legislation.
I suggest putting any request to record an appointment into a letter to GP/practice manager and keep a copy of request and any response to it.
I would hope that GPs and other doctors would behave well if they are being recorded.
Have you managed to find out the local guidelines on treatment/diagnosis of B12 deficiency for your CCG yet?
The reason I'm mentioning it again is that some GPs may be constrained in the treatment they offer by local guidelines that differ from BNF treatment advice.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Ask Dr to do a test called MTHFR in regard to gene variations, that told me alot and confirmed PA. Since you've felt tired for a long time it may take awhile to feel better. I've only had 6 shots everyday now and on 5 & 6 days I have felt better, slow but better. Hope you get started on shots soon. Take care.
Thank you! I e-mailed the doc to see if I could start jabs sooner but have had no response at all. Talking to them in person is almost impossible now 🙄
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