red blood cells normal, B12 65 IF antibodies - doc stumped - any ideas

On Monday I was told I had B12 65, IF antibodies and diagnosed pernicious anemia

I have neoro symptoms, exhaustion for a couple of yesrs ( B12 wsa 103 in 2011 but left untreated)

My doctor said that he was confused that my full blood count showed enough blood cells of normal size and expected enlarged red blood cell and lowered number.

I eat halthily, and take vitamins

any ideas why my blood count has not dropped / morphed into large red blood cells?

Thanks for your help

M

11 Replies

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  • Thanks to Andrea and vix on the PAS website forum -

    idpas.org/pdf/3231VitaminB1...

    apparently it is not unusual to have normal red blood cells even with IF antibodies and PA.

    excellent news - will be sure to point my doc in the right direction if he has not found anything next time we speak.

    once again patient power to the rescue!

    Thank-you

  • I notice you take vitamins and am wondering If you also take folic acid. Unfortunately supplementing with folic acid can give a distorted reading as it reduces the size of the red blood cells but,you are still B12 deficient and will continue to suffer damage to the body. Many doctors for some reason do not realise this. When being tested for B12 always stop any folic supplements for at least a month before being tested. Doctors are advised to test B12 before prescribing folic but often don't.

    This is taken from nhs.uk/Conditions/Anaemia-v...

    "Before you start taking folic acid, your GP will check your vitamin B12 levels to make sure they are normal. This is because folic acid treatment can sometimes improve your symptoms so much that it masks an underlying vitamin B12 deficiency. If a vitamin B12 deficiency is not detected and treated, it could affect your nervous system (brain, nerves and spinal cord)".

  • I saw the docs today he said there was no point in measuring B12 now I ma non injections, he spoke to haematologist ( as I had asked to see one) and the haematologist said three was no point in seing me until my symptoms are better and have had a few weeks of injections, he also spoke to a neurologist who also told him there was no point in seing me until I had had a few weeks of injections.

    I asked him how he was going to measure my folate, zinc and Iron ( as per PAS) website - he said the NHS do not test for zinc, and there is no need to test for iron and folate - I can get all I need form my diet.

    he did eventually agree to do a blood test, but wrote on it not until end of march, so not the 10 days reccomended on the NHS website. I pointed out the website link you sent me and he said they are talking about hte anemia which you do not have ( red blood cell count fine)

    I asked him if he had spoken to the haematologist about the red blood cell count - the haematologist told him PA is rare - there are not enough people to test on so no evidence either way.

    I told the doc about the research ( link I was given from PAS above) and that high folate levels can make blood cells look normal - he said thanks but that was the end of his interest in the matter.

  • Hi M,

    How often are you having injections (5 to start, followed by one every 3 months?)? I'm going back to my doctor this afternoon as I've been sent home from work (again) due to pains. I've also read that a blood test should be done after 10 days, but this hasn't been mentioned to me...

    K

  • Hi Kitkat,

    interesting you should mention pain - the doc specifically told me today that the B12 injections will do nothing for my pain as B12 is not related to pain - which I know is rubbish, but cannot lay my hands on documentaiton to support this.

    The link for the 10 day blood test is: nhs.uk/Conditions/Anaemia-v...

    you can always email that to your doc, or print off the page and take it in next time.

    The docs have gone from 1 injection, to 5 injections, to one every other day until they think I am better (althought hte doc did say he was not sure how to judge that - I told him it will be when I feel I am better!)

    The it will beinjections every month ( orgiginally every 3 months)

    I have fought them for this, provided them with info from the PAS ( pernicious anemia society) and I think my nurse ( who does the B12 injections) has told the docs off and I have a feeling ( although sh edeinies it) that my sister called and complained on my behalf because the docs knew I was low (103) in 2011 and did nothing untill I badgered them for a blood test recently ( I was 65) but it has been a struggle and continues to be one.

    according to NICE guidelines: cks.nice.org.uk/anaemia-b12...

    I should be seing a haematologist, acccording to the nurse I have a right to ask for a haematologist and the docs cannot deny me, according the NHS direct (111) I should see a haemtologist, but today my docs said no.

    it is so frustrating, especially as I struggle over my words, and in tremendous pain, and had to wait 30 minutes as the doc was late, i cannot stop shaking and my emory sucks, and I am having to focus on the conversation witht he doc to argue that he is not doing the right things - it is exhausting. However, if I do not stand up for me and my wellbeing, no one will.

    That is why a site like this is so important - I would have had no idea without the help and guideance from people on here, and I would have given up long ago without their support and freindly banter.

  • I don't know if this helps but I was diagnosed as having low B12 in December 2012 when I was in hospital following a fall down the stairs that left me with a fractured ankle that needed pinning.

    I had been struggling with tiredness most of the year but had put it down to depression - even though it tended to be worse in the evening when in the past my tiredness and lethargy had been worse in the morning.

    I don't have abnormal blood cells. I'm a vegetarian but do eat cheese and eggs and tried making sure that I got plenty of B12 in my diet for a few months after whilst I was recovering with the ankle but still found that I was getting really tired, but still hadn't made the connection. I found it really difficult to find out anything about B12 and doctors just didn't seem to want to explain anything possibly because they didn't understand and were focusing on the ankle and depression/anxiety. It wasn't until I rang up in October 2013 to find out about getting a blood test and burst into tears on the receptionist - partly because I was tired but mainly because something pretty upsetting was going on in my personal life - close friend having heart attack and not having access to any news about how they were. I spoke to a locum who actually seemed to know what he was talking about and explained that there wasn't much point in having a blood test because my B12 levels were going to be high from injections I'd had following the original diagnosis. He booked me in for an injection and for the first time I noticed what an impact they had on me - for most of the past month I'd been ready for bed by 1300 and I got to 1600 that day and was feeling full of beans. The locum told me not to wait for 3 months between injections but to go back when I felt my energy levels running out and said for most of his patients that seemed to be around the 10 week mark ... though I think for me the lethargy starts to creep in from 8 weeks. I actually had the energy to do things that I hadn't had for months. I recently went back for a top up and found that prescription hadn't been signed off and was told I was early - I was absolutely devastated as the thought of waiting another 3 weeks until I got to the 3months was just too much. I said about the doctor I'd spoken to in October saying that I shouldn't wait and fortunately the GP that she saw put a note on my file so I shouldn't have that problem again but whilst the nurse was out of the room I just sat there wishing everything would end ... and I was just too tired to cry.

    So much seems to be down to luck.

    The symptoms I notice when the get up and go runs out are the tiredness - like the whole move process is going through a delay loop and thinking gets really difficult ... in fact I have to change some of my thinking strategies to cope - if I'm travelling (bicycle mainly) I have to spend a lot of time consciously establishing a background frame against which things move - guess my subconscious does that naturally under normal circumstances. Remembering names gets terrible ... and I sometimes simple words completely stump me. I get bouts of diarrhea and constipation as well but those just seem to be there regardless of the top-ups.

    Just a thought but have you considered trying another GP, or asking if there is one at the practice who understands B12 deficiency and pernicious anaemia - think the name is a misnomer that sets some of them thinking in terms of one set of symptoms and causes when actually the problem seems to be something completely different - nothing to actually do with Anaemia.

  • Hi Gambit,

    Thank-you for your reply.

    i am going for my 4th injection today and do not feel any difference yet.

    The doc is being helpful now, he has changed my dosage to every other day and until there is no more improvement ( although he said he did not know how this would be measured)

    The difficulty I have is manyfold - I need a docs certificate for work and they are saying they cannot do this until the last one runs out, but that is an extra journey for me, in the meantime work have put me on SSP which is putting a strain on our finances. My husband is fed, he asks me several times a day if I fell better yet, no pressure! I am missing out on so many family things, including my sons events - this is all due to the pain.

    The tiredness went way beyond just being tired a couple of years ago - but with the added pain, I am just not finding the energy to get up, let alone go up and down the stairs - i have to take a couple of rest breaks on the stairs, and all in all it is so frustrating when I cannot even remember the words, I cannot tell my husband how much it hurst - it is such a boring topic now I just feel it is all too much effort and too much bother.

    just going for the injections causes me so much extra pain ( getting dressed, car journey, waiting in the surgery) I resent having to go, but htey will not let me do the injections myself until the shaking stops.

    they are unclear what symptoms go with what 9 slipped disc, thyroid, PA, Fibro) and althogh thanks to the physio I got the docs to set goals at our last meeting, they are simply to take the injections, blood test end of month to see how that works, take the pain killers and do the physio and see how that works.

    the doc said the injections might take 6-8 weeks to show any benefit, but as he is not sure which of my symptoms are caused by it he is not sure what benefit there will be, but he was adamant that the apin was not related to the B12 deficiency.

    I think I have seen most of the doctors at the surgery, as you tend to get whichever one is available at the time, but the one I saw last is trying to help, he just seems to be lost as to what to do next.

  • Sorry to hear about the pain - does sound as if the most significant element probably isn't down to B12.

    I went through a load of stuff on the PSA website yesterday and one thing they said was that people do react differently to the injections in terms of how much relief they get from the symptoms.

    Can you ask specifically to see the doctor that you last saw next time you need to make an appointment - if you find that he is more helpful and it certainly sounds as if it is. Medicine is often more of an art than a science and you have to try things to see what works. I actually think it is quite positive that the doctor is admitting that he isn't sure and that it will be a question of trial and error - and I think that is a sign that he really is a competent doctor.

    From what I've read of the condition anaemia is a bit of a misnomer as that really seems to be a symptom rather than the actual nature of the disease and I think it's one that may take a very long while to appear.

    Leaving aside the pain, have the injections had any effect on your tiredness?

    I suffer from depression - and have done for over 30 years - it's periodic and one of the things that hit me after my last injection was actually how depressed I was because of things at work - before the injection I was just too tired to really notice anything but the tired ... and that was a bit of a surprise for me.

  • Hi all,

    just to update anyone who followed this initial discussion that last month my doc stopped giving me B12 injections.

    He did not see me, he did not do any tests, he just decided I must be full by now and that was it - told me over the phone.

    I explained to him I am not better, I am in fact having more issues - his response was it must be something else - again no tests to prove this either way.

    I have now ordered at my own expense a number of blood tests from medi-checks - a private medical company recommended to me by another member - and awaiting results.

    so far I have had my thyroid results through and lo and behold the thyroid antibody test my doc said there was no point in doing showed that out of a range of 0 to 115 my blood tests at over 4,000!!!

    I have let the surgery know, and asked the doc to contact me to discuss, surprise - no reply from the doc.

    It is as though the doctor takes offense at you suggesting a test and when it turns out they were wrong not to do it ( my B12, my thyroid antibodies) they clam up and shut you out like you do not exist, as to exist means they were wrong? they are only human, I am fine with people being wrong - I am wrong sometimes too you know, but what matters is what you do about it, and doing nothing whilst watching your patient suffer is madness!

  • Mrs_Somerset, your doctor isn't just wrong, he's negligent. He is in blatant disregard for the guidelines, he can't just stop your B12 treatment, it's for life. I've posted the new BCSH guidelines in the posts section, have a read and highlight anything you think is relevant to your situation. Then shove it down your GPs throat. I really think you need to find another one, and I hope you are sourcing your own B12 in the meantime.

    H x

  • Hi,

    I should state - I am allowed another injection in July ( so once every 2 months) but the point I was trying to make was that he decided all of this based on a quick chat with a colleague at a course who has never met me, and without doing any tests or even seeing me, and bering in mind the last time the doc actually saw me he called the hospital to have me urgently admitted - and nothing has changed since then!

    Sorry if I gave the wrong impression - I mean he stopped the regular dose - and that once every 2 months is all I get without looking into what else it might be - if he truly thinks it is not B12 giving me the neurological symptoms.

    he also has done nothing for my pain ( since september 2012).

    I have thought about changing surgeries ( as I have seen most of the docs at mine - you just get who you are given), but of the two others in driving distance - they both gave me a hard time when I just called to find out if they were taking patients and how I would go about swapping surgeries.

    I believe I live in what is known as a healthcare blackspot.

    I have printed off the guidelines you posted though, thank-you - and will beat him about the head with them the next time I get an appointment - when that might be - goodness only knows, it is not as if he has scheduled anything to keep an eye on my progress - even when I blatently asked him how he would keep an eye on me - he said I would let them know if things got worse - fab isn't it :-)

    thank-you for helping all of us - I really do appreciate all your help and advice,

    M

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