Continuing saga

Hi All, I haven't posted for a while, probably hoping that I would eventually have good stuff to tell. Unfortunately, that is not quite the case. I first posted around August time last year and had my loading dose and waited expectantly for my next shot 3 months later. Then after that 8 weeks later and now down to every 6 weeks with a newly discovered folate deficiency of 2 and 3. I really do not wish to sound ungrateful but very little has changed. I loved to walk, that's gone, I loved helping with my daughters horses, that's gone, in fact even shopping alone has gone. I would never have believed that such a difference could have been made to my life.Even the specialist refused to see me because eventually my figures had crept from 98 to 493. They are at 523 at present, and I am trying patches and Jarrows b12 tablets. Unless you are in this place, it is difficult to comprehend the consequences and the looks of, frankly, disbelief have to be witnessed. Sorry to be a miserable sod but every now and then it does you good to have a bleat to folks who know!

17 Replies

  • Hi Ruby-Dooby ,

    Most here will know where you are and I hope for you the addressing of folate def will make all the difference, but many here have also taken things into their own hands and learnt to self inject, or get their own supplies of B12 ( in what ever form suits them best) to add to the NHS treatment.

    Un fortunately it is for many the only way out of a sad situation, and helps a lot in getting quality of life back. It is as if the NHS treatment only keeps you alive, but does nothing for the quality of life..although there are many that are just fine on NHS treatment, it just does not w2ork for all, we are very different in why we are B12 def and what we do with the injected B12. The standard treatment is just that standard, does not cater for the individual who may need more, or more regular top ups.

    Its a bit like a car, if you drive a car on an empty tank it will not run, fill it up will mean most cars run, but some still have other problems that mean the petrol is not getting where it should say. Just saying your tank is full so it should run is not going to help if it is not running as it should..Other issues could be playing a part, iron def, folate def, thyroid problems etc, it should be investigated why you are not doing well on current treatment, and ideally tried what would help you.

    I hope this helps,

    Kind regards,


  • I would echo Marre's advice.

    Sorry to hear you're feeling so awful. I think many here find treatment for B12 deficiency or PA can be an uphill slog, and it's definitely worth checking for any other nutritional and hormone deficiencies. I've injected methyl SC 1000mcg every day for 3 months and I've found it to be an up-and-down affair so far.

    Just an observation about the Jarrows B12 supplements: I've persuaded my husband - a veggie for 30+ years, tired all the time and with increasing memory problems - to try sublingual methylcobalamin. In January he started Solgar 1000mcg methyl twice a day and saw a rise in basal temperature quite quickly. He was beginning to feel a bit better in himself when the Solgar ran out and he started Jarrow 5000mcg methyl. That had to be even better, right? Actually, it proved to be an inferior product and he noticed the difference very quickly. Being a thorough-going Yorkshireman, he insisted on finishing the bottle. ;) Now he's back on the Solgar at the lower dose, and things are beginning to look up again.


  • Don't worry about letting off steam. If you can't do it here, where can you? :)

  • For heaven's sake don't be embarrassed - it's amazing how many people are made to feel guilty when they are ill.

    What bothers me in your case is that you clearly aren't on enough meds. And that means that you can be getting further internal damage even though your B12 levels are normal.

    Why, oh, why can't anybody seem to understand that you treat the SYMPTOMS not the blood.

    To be quite honest I think most of us would be better off if they shot that damn serum b12 test off to the moon.

    Then we would simply have to be believed because doctors couldn't use the thing against us.

    I'm sorry for the loss of your quality of life. I was very out-doors too.

  • Many thanks for your response Poppet11, I often read posts and responses and so many answers come from a very few. You few must spend so much time helping others, it must drive you crackers repeating yourselves, but it is truly appreciated.

  • Poppet11, I have no idea what other meds to try. I have now started with the Solgar sublingual b12 tablets, folic acid, b12 patches to be applied once a week and my injection. I still feel pants and frustrated. What do you suggest, I know you have a host of info but please don't feel under pressure to respond, I will totally understand. Ruby-Dooby

  • Well for a start you can try and get hold of folate rather than folic acid. I, and I know quite a few others, actually feel worse when taking 5mg of folic acid a day. I feel the effects after a couple of days. It really does make me feel rotten.

    I can tell you for sure that when I was first diagnosed if someone had told me I could only have a jab once every 3 months or 2 or 6 weeks, I'd have ripped someone's head off. Actually they did tell me that but I injected myself.

    The bottom line is that B12 taken orally simply doesn't work for some people. Gambit has the nasal spray and if you don't want to inject I wonder if that would help?

    You also might have to ask the doc to check if anything else is going on. And you could try an iron tonic to see if that boosts you any?

  • Thank you for the info, getting straight on it.

  • It took me aboput 15 months after being told in hospital - totally unrelated - that I was B12 deficient to decide that the NHS treatment really wasn't doing it for me - couldn't get doctor to listen - not that he seemed to really have much clue - and decided that I really needed to treat myself at much higher doses.

    When I was in hospital I'd been sent home with treatment if no neurological involvement but over the year after it was becoming obvious to me that I did have neurological involvement ... I was in the hospital because I had a fall and twisted my ankle so badly in trainers at the bottom of the stairs that I needed to have the ankle pinned because I'd fractured it ... and nobody thought to ask about whether the fall might have been because I had balance problems - all focused on osteoporosis and nothing else ... this is starting to feel like a rant :)

    As Poppet says - medics these days aren't very good at joining the dots.

    Anyway - I started using a nasal spray in very high doses about May last year - about 3mg a day - within 2 weeks I went from struggling to walk because balance was so poor and I just had no energy to being quite happy perched at the top of a ladder on my own pruning my grape vine. 3 months later I realised (much to my surprise as I've suffered for decades) that I wasn't getting so stressed and certain didn't feel as miserable and depressed and as if I just wanted to die because life was something you just had to go through and had been that way for years. So, taking things in to my own hands has really lead to me feeling like I have a life after feeling that I only had an existence for decades, so totally understand the rant.

    I use a mixture of methyl and hydroxo as the two work for me on different symptoms so it is worth experimenting ... and every so often I find myself reflecting back on what life was like this time last year and how much more I can do - even running up and down steep embankments to pick litter on nature reserves is a possibility now and its so nice not to be a nervous wreck and a grumpy sod and be able to just let my relatives wash over me rather than totally stress me out.

  • Where do I buy these nasal drops? I am at breaking point :(

  • I get mine from detox people

  • Gambit62, thank you so much for your time and consideration and for a comprehensive explanation of the course I should now take. I am very grateful.

  • Thanks. Which one do I buy?

  • Nasal Drops - Hydroxy - 1000mcg

    Is this it?

  • that's a good starting place and is what I use

  • Hello Gambit62

    The nasel spray sounds interesting. Can I just check have you been receiving injections from doctor too or has this spray helped on its own?

    I have been taking sublingual solgar - 5000mcg per day - divided into 2 doses (split the tablet) and it has worked even at lower doses, but it is not getting to the neurological symptoms and Mum who is taking it with me is finding it is making her gums hurt. So the spray sounds a good option if it has worked on its own.

    Thanks in anticipation


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