Dead end with diagnosis

Hi,

I will try not to sound too down as I know I will perk up and I know there are many people on here who are suffering healthwise a lot worse than I am but I am rather down and confused on where to go next. Anyone who read my previous post will see that I have an open minded GP who admits to not being a specialist in this area, I have been most grateful for this as she agreed to a trial dose of 5 months worth of monthly b12 injections (no loading dose). I left it until my 4th dose to see if an improved pattern ensued which it did, in fact a couple of the months felt like a miracle had happened. She agreed that I seemed to be responding to the treatment and she would speak to the lab about further testing. Well I've spoken to her this morning and she has spoken to the haematologist who said they can not justify further testing for PA because my levels are not below the lab requirements in this area 180- but they didn't say I should stop treatment as I'm responding!!!! Anyhow I discussed with GP about how many people go on to have other tests first for MS etc for all the symptoms and how much money that must cost the NHS and they end up being confirmed as PA or b12 def anyway or just get so ill they never recover and have treatment on the NHS that could have been avoided. She didn't disagree but said there was nothing she could do because they refuse to let me be referred! she suggested that I might think about private testing? That's all well and good but which tests to have first?? the actual PA test for antibodies etc I can not afford unless I borrow the money or sell something and is that even the right way to go about it?

I'm doubly frustrated as this month after my jab, which is the 5th monthly one my symptoms didn't go away and I have felt really rough with skin burning, wobbly quads sore mouth ear aches 10hours sleep everynight and still drained yada yada yada, you know the story. My question is can this happen some months, does that happen to some of you? as its left me doubting myself and my resolve, should I be fighting this battle, will I be left with egg on my face? I'm so fatigued with trying to collate all this info and doing something constructive with it? its also hard to live with guilt, sometimes I feel I should just give in as I know there are people who have more obvious and immediately life threatening or life changing illnesses? Sorry if I sound like I feel sorry for myself, I don't I love my life and have a wonderful family and husband but I just worry that quality time I could be spending with them is being wasted if it is PA or b12 def and something could be done to help. I know I'm very lucky to have an injection per month but do you think this is just putting out fires because I didn't have a loading dose?

Anyway sorry for the long post and a big thank you to anyone who took the time to read it.

9 Replies

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  • Not easy to answer that one, no point in spending money on tests now as you have been on B12 treatment, unless you are prepared to stop B12 for 6 months or so to then start testing active B12. MMA etc. If you want the easy way out and the cheapest then you learn how to self inject (get your nice GP to show you how) and try a loading dose of B12 to see if that helps you. Perhaps making sure you take a multi (B) vitamin to make sure you do not have/ or get other (B) vit deficiencies. Most vits need each other sop giving loads of one and not the other can cause imbalances say which can mean you do no utelise the B12 etc. B12 in principle does no harm, to much is just removed, although I do wonder why some hang on to injected B12 far more than others. Its all a matter of trying and taking full responsibility for what you do, cause no one medical NHS can support you unfortunately, they have to stick to guidelines and budgets I expect..I make sure I stay in "normal" levels , its easy for me, I do not seem to hang on to much of the injected B12. We all are so very different, but symptoms count as much as figures and numbers. Marre.

  • Did you take the BMJ article in to her? That clearly states that the test should not be relied up and for doctors to treat the symptoms. Your haematologist should know this also.

    Hunt, in the article and in the responses section, basically absolves herself, or her team, of the responsibility for the treatment regimen also - clearly stating that they have had to refer to it (it's all they've got) but it is not based on any research.

    I feel so sorry for you because it's a ridiculous situation to be in. And most of us have been there.

    Your GP is absolving herself of the responsibility for your health by telling you to do it yourself. It is up to her to update her skills and knowledge and familiarise herself with the latest research.

    To be honest I'm pretty much appalled by her attitude - you go to a doctor for their professional advice, and they should provide that, they have a duty to do so.

    I know you like her, but I'd bat the ball right back into her court with the BMJ stuff (if you haven't done so already) It knocks the diagnosis of b12 into touch and it also puts a big ? over the treatment suggested by the BNF.

  • Thanks for your replies, I have joined free 14 days on bmj and copied the Article to read- I really would prefer to have the backing of a GP, we can all dream :/. And yes thanks Marre would be a waste for some of those tests now thinking about it and a big NO to going backwards to only potentially go forwards with symptoms etc just not worth it! I have started taking methyl folate400mg a day and already take Wassens Magnesium-OK which has various minerals and multi B vits so am hoping this will be enough to compensate any drop now I'm having the injections? Deep down I know its my doctors responsibility to provide me with this treatment even if she has to fight from her end and I say I like her because I want to like her because I am sick of being disappointed in the nhs and having to fight all the time, its not my nature and I find it upsetting (I know I know wise up).-I think the nhs is amazing it provides so much and I don't want to 'bash' it but it also lets us down on a daily basis, it just should not be this hard it is exhausting- I am up for taking complete responsibility for myself and treating myself if it comes to it. I'm just tired because we fought for years to find a diagnosis for my father which only happened after going privately and now I'm having to do the same for my mum. Its like if we don't fit in these little boxes then there are no answers and you cant have treatment! Anyway sorry I'm off again and you've all heard it all before!

    My next jab is due in around 10 days so I'm going to ply myself with sublingual's send off for the nasal spray and take a deep breath and start reading bmj article and make some decisions on learning to maybe self inject.

    Thank you very much for your advice and just allowing me to sound off.

  • It is very upsetting; it just is. It should not be like that, normal people do not want to be ill, do not want to be on the surgery door mat regularly, hate having prescription meds given...if they then come in and say I'm not right, they should be helped, not left to sort it out them selves. But it is what it is, and only you will benefit if you sort it out your self, no one is going to do it for you sadly enough. Am sure you will get there. I used to faint when I saw a needle, its like brushing my teeth now, all part of the keep the body clean and in good condition, well as good as you can get it I suppose! Marre.

  • Thank you :)

  • We all know exactly how you feel, self injecting has given me the freedom from the ongoing fight with the NHS and the relief to know I am doing what I can, as soon as my Methylcobalamin arrived it was like a weight lifted. Look after yourself and keep an eye on your iron, I was told it is best around 60-80 and 14-15 for folate, I take vit D as that was low 2.

  • Thanks so much am seriously considering self injecting. you've just bought to my attention that I don't think my iron was tested!? Folate, ferritin and b12 were and read 10.6ug/L 121ng/ml and 220 ng/L. Had a full blood count done including MCHC which was flagged up as 362 g/L ref range 320-360 which I took to mean red cells were larger than should be?? Is ferritin how they check for iron levels do you know? My vit D was originally 37 but I've got up to 100 so am happy with that. Sorry lots of questions.

    I'm so glad you all bought my attention to the fact that the other b vits could alter once having injections, this has not been mentioned by my GP or nurse and I would have probably naively ignored.

    Also I don't know if you've posted this before, my apologises if you have but can I ask you roughly how long before you started feeling well once you had sorted your own injections? did you ever have a loading dose? or did you do your own loading?

    I hope you don't mind all these questions.

    Thank you.

    jsteg

  • I had loading doses from GP nearly 2yrs ago, I am still struggling some days I felt well for 6 months so stupidly stopped taking methyl, bk on it bout 4wks, still trial n error with me, I'm going between IM and SC to see what works best every 3 days, ave noticed when doing SC I pass a lot in my urine. Ive always thought until recently that ferritin was iron, until I read about making sure to get iron checked as well as ferritin so I am confused about it. Hopefully someone will put u in right direction.

  • Mmmm thank you, it really all is a case of working it out to suit it seems, as we all so different and as discussed before by others probably various different reasons at different levels for body not absorbing, storing the b12. Thank you for your time and advice and good luck with getting back on track with it all.

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