More frequent injections needed

hello all,

I am writing to just say firstly how useful I find this forum - a lot of people on here are very knowledgeable and knowing that I am not going through this on my own helps me a lot.

I was diagnosed in July with PA and had previously been told my blood showed parietal antibody cells. My B12 levels then was 176 and folic acid 1.1. I was given 5 loading shots over 2 weeks and then told every 3 months together with 5mg folic acid daily.

Initially after loading shot 3 I felt fantastic, however this only lasted about 6 weeks. I posted on here and was recommended to go back to gp, which I did to be told by a different dr that I didn't have PA as I wasn't anaemic and they couldn't give more injections without repeat bloods.

I left the surgery feeling very confused and upset as I felt she didn't understand how I awful I was feeling at all. Anyhow roll forward a few weeks and I had my repeat bloods and yesterday went back to see my original gp. He tells me my folic acid is now over 20 so he was pleased with that, my calcium is 2.2 (he said this is low) and b12 300 - he was expecting this to be much higher as I have had loading shots and he said this should be in the thousands. I explained how awful I have been feeling, the tiredness, headaches, confusion, memory, upset tummy, etc and he said I now need another b12 shot today followed my monthly shots for 6 months and then another blood test.

On one hand I am pleased that he is listening to me and understands how important b12 is and seems to want to help - on the other hand I am wondering if I should be referred to a blood specialist.

Any advice would be appreciated.

Many thanks

Hayley

15 Replies

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  • There are a few exciting things going on at the moment and hopefully you can use them to your advantage.

    Firstly, there is an article in the BMJ online titled Vitamin B12 deficiency by Hunt et al that came out in September and explains the metabolic pathways that b12 follows. It shows doctors that they shouldn't be looking for anaemia because it comes at the end of the pathway.

    Secondly the article shows how unreliable the b12 test is. Now in your case you aren't seeking a diagnosis. But it 'may' prove to your doctor that judging your condition at this stage by looking at your bloods rather than your symptoms (taking into consideration the problems already hightlighted with the serum test) that he may just start treating your symptoms in light of neurological damage rather than trying to assess them via blood tests (which is impossible!)

  • The NICE guidelines in UK do recommend referral to a haematologist if there are neuro-symptoms but treatment if it isn't immediately possible.

    Personally I think the important thing is that you are receiving treatment and that it does seem to be helping. You could ask for a referral but I'm not entirely sure what this would achieve at this point and it could just confuse things.

    B12 deficiency is not a blood disorder - that is a symptom - and used to be the symptom that was expected to show up first - these days people are increasingly presenting with neurological and psychological problems long before blood disorders show up. Sorry to hear about the doctor who dismissed the possibility of B12 because your blood wasn't showing anything up. Unfortunately it seems to be far to common an experience - lets just hope that efforts of PAS and B12D succeed in educating GPs so things like this get rare and rare.

  • People were always presenting with neuro symptoms first, Gambit - the metabolic pathway hasn't changed. It's just that nobody has looked to see what the pathway was - everybody was talking about anaemia and getting bloods right. From what I can see they still are - and then wondering why people are still 'symptomatic.'

    I do think that some people when they have had, what can only be termed as the 'initial' neuro symptoms thought they'd had severe neuro symptoms because of the way in which they got a diagnosis - they thought that was as bad as it got. Yet you only need to look at Dave Carr to see how bad it can really get. And people in that condition aren't in a fit state to post on a forum. Reversing blood levels was never going to get Dave back to square 1.

    And I'll be honest with you, I'm annoyed.

    The PAS haven't put anything on their website about the BMJ study and it's the biggest thing to happen for years (decades) that is likely to get patients diagnosed more effectively. Yet there is a link to Patrick Holford's site supporting the PAS. And lo, it costs to join! Patrick Holford in some circles has not got the best reputation - and despite the BMJ findings and the metabolic pathways being clearly established Holford is still asking why people are ill after treatment. Duh, because it's neurological injury and they are only treating the blood?????

    It's like the man has never even heard of (or understood) the significance of the research.

  • Hi Poppet,

    I do agree, know that I developed neurological problems I did not have initially during 5 years of conventional B12 treatment, as you say by then my bloods were "normal" (serum B12 230ish) so that meant my GP said it was all in my mind and I therefore tried to live with it. I should not have waited as long as I did, I wasted one month out of 3 and my kids missed out as they had a Mum that could not drive in the dark to parties, was just to tired for a lot of things, I hope others here will self treat when they know/ feel more B12 will help them have a normal life.

    Kind regards,

    Marre.

  • So you got diagnosed Marre and got conventional treatment and then developed further neuro problems while on the treatment?

  • Yes, I did not have them in initially.

  • You see I can't knock self treating because I am certain if I hadn't have done, I would have died. It took 6,000 mcgs just to get my b12 up to 176.

    I think the danger, if you will, comes from several different angles.

    Firstly, we don't know at which stage in the progression of the illness each person is at - neurologically speaking. Nor do we know their personal circumstances. We don't know if they work, or if that work involves manual labour, driving, how badly their eyesight is affected, or if they are elderly, or if they live alone, have half a dozen children, or are in a block of flats with no lift, or ... you get my point?

    So I don't think we can say to somebody: do x, y, and z. Because if you have someone who is a lorry driver but who can't see properly (and I do not know why opticians find nothing!) then it may be that he needs to be off work and on mega b12 before he can even consider going back. So then he needs a doctors consent! Also you are in a position where you may be in danger of misleading someone who isn't going to be okay (I know for the first year I thought all my symptoms were going to resolve eventually!) into thinking they are okay - or at least going to be able to manage in their own situation. And for many people that may well never happen.

    And also, like with your problems after you got treatment, we don'tknow if they are getting enough to both halt and reverse their particular symptoms. We have no idea because we don't know which stage they are at (although we can probably exclude the final one)

    I was nearly blind by the time I got treatment - yet one of the first things someone told me was to drive to the nearest hospital. Hmmm...... That would not have been advisable. Even when I self medicated and started driving short distances I had to have 3 different strength of glasses on the dash board. Life was weird!

    So, yes, of course I agree with self medicating - because at the moment there is little option. And I agree that b12 injections should be available over the counter. But what I don't want to happen is that doctors end up being absolved of their responsibility in managing a serious neurological condition and doing their job properly. They don't send MS patients or motor neurone patients off to sort themselves out - and they shouldn't be allowed to do it with us.

    And, of course, it is like Gambit said the other week - what about all the people that don't know what is happening to them. They don't even know about self medicating - we are just a fraction of a huge mass.

  • Oh yes its not a miracle cure for all, and other things may well play a part or crop up over time, things change, you change over time, its more about learning to feel what does you good and what not. And that also changes over time. Also one adjusts to certain things very quickly. I think I have barely any balance problems now; until some one checks me out, and I fall as I walk to them whilst looking at them, I just normally now look at the floor, that is why I am fine, you know. I do not know why, but what worked 5 years ago does not now, things change and that will be different per person, age and lifestyle also being an issue. I think Its all about getting the best quality of life you can have at any given time, and how long that lasts depends on so many other factors, besides just aging. Yes I remember not seeing much, B12 treatment lifting a cloud of not only fog from brain, jelly muscles but also improving eye site.

  • You do make adjustments but sometimes stuff just gets worse - we need it acknowledging. You see people like David Carr and you wouldn't expect them to look after themselves or not get treatment.

    This illness is being picked up as misdiagnosed MS in the US now all over the place. People have been crippled. We shouldn't have to go through stuff like this - or not even getting severe injuries recognised at all.

    The question has to be asked at some point, how many people have died of this without it ever getting picked up. The suggestion 2 decades ago was that 5% of dementia patients were actually b12 deficient and could be reversed if they were treated 'correctly' and early enough. That would be a very large figure.

    And very few people, if left to the devices of the medical profession are getting the correct treatment. It is only a handful, like us, that are - and we are doing it ourselves.

  • Oh yes, If my father was diagnosed earlier would he not have lost 10 years to alzheimer (AD), if my aunt was diagnosed earlier would she not have had AD and osteoporosis, if other aunts had been diagnosed earlier would they have lived longer, would the depression that has taken lives in that side of the family not have been there had those been tested for B12 def earlier in life? Who knows. My Dad only got tested after I was diagnosed and I said to my Mum he is doing all the things I did, shuffle in the dark etc, he was terribly B12 def, and well and truly lost into AD. Who know what has caused what in the past. Its perhaps best to look at the future, to possibly help avoid what has been..

  • The numbers affected I think would be frightening if the truth were known.

    Yes, hopefully the future will allow many of these cases to be caught - and as you say, you saw your symptoms in your father.

    I do not think there will be a big bang in changes - I think they will happen without people being made aware.

    I think already doctors are now questioning what they believed they knew.

  • I think as well Marre, that quality of life is relative. Most people don't get this condition and their injuries recognised - no matter how sick they are. You only have to look at NHS Choices to realise that there are many very sick people who are still having to go out and work - and this problem not only compounds their injuries but makes them question the humanity of their doctors. Not only are they not getting the correct treatment but they are being injured further by being given no rest and care. I appreciate it is different if you have managed to get doctors who will recognise the condition - but I don't think it is appreciated that most people are not this fortunate. I was very relieved to see that on the BMJ credits section a doctor mentioned that it would seem they were undertreating people with neurological damage. If they start to recognise that many people need assistance and that their injuries are not imaginary then this will improve the quality of life for many thousands of people, not just a small number who have acknowledgement of illness.

  • Hi hjcohen ,

    Perhaps first see (feel) how you are on the treatment now given (although I would have thought you'd be better getting your last 3 loading of the six first) and if you feel no better ask to see a haematologist?

    Kind regards,

    Marre.

  • Hi, thanks for your replies.

    I think I will see how I feel having injections more regularly, hopefully it will improve my situation. If no joys, I will ask to be referred.

    Regards.

    Hayley

  • If you have parietal cell anti-bodies, you will very likely have gastric acid achlorhydria (no stomach acid) see the latest BCSH paper on guidelines for the diagnoses and treatment of cobalamin and folate disorders published by the British Commitee for standards in Haematology. see page 7 under heading b) Gastric anti-parietal cell antibody. You willhave tummy problems--bloating,cramps nausea etc.

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