30 Injections and a Decision

After 30 injections I have still not seen any significant improvements.

Although I've finally accepted that this is going to take some time, today I had to make the sad decision to not go on my trip to Santorini and Naxos-I was due to fly Tuesday. Santorini is somewhere I have desperately wanted to visit and I worked so hard to save and fund this trip. But I can hardly walk and I feel awful so I know that realistically I couldn't physically do the trip. I will have to go through my travel insurance and see if I can get any of my money back.

I know that there are far more serious things going on in the world than a lost Greek island adventure but this is my life and I can't help but feel a little devastated :(

I just needed to write this down...

23 Replies

  • I am so sorry that nothing has worked yet . I can't think of what to suggest, except keep persevering, in the knowledge that you can do no harm with vitamin B12. You are making sure that you are having enough folate/folic acid, aren't you? B12 works in conjunction with B9(folate) I was hoping that some knowledge able person would step in and be able to advise you. I noticed that no one had replied and I couldn't bear to think of you looking for a reply and finding none. So I thought I would let you know that I was thinking of you. That is a blow, not being able to go on your dream holiday . But if you're not feeling up to it it's no use going. So I say persevere . I send you my very best wishes. 🍀🍀🍀

  • Thank you very much. I'm taking 5mg folate/day.

    My family are trying to persuade me to go but I'm worried about mobility.

  • Oh poor you, such a shame. I hope at the very least you get some of your money back. No real compensation i know but......

  • Like wedgewood I have kept looking at your post and wondering what I can say and hoping that some one else will have something more helpful than I can offer.

    It is so disappointing when things seem to improve and you think you are on the right path and things change and you wander if you are doing the right thing after all. I do know that feeling.

    Maybe you could set yourself longer term plan and have a date in your mind when you WILL go on holiday. It can help to have something to aim for.

    In the meantime, persevere and hopefully things will get better soon its early days. Very best wishes.

  • Thank you :)

    I'm in a Facebook group with many people who start to get significant improvements after a handful of injections so it is quite frustrating.

    I haven't really had many other things ruled out so there is a little worry that this is something more than B12 as well. I self-diagnosed as doctors wouldn't diagnose a deficiency - my B12 levels were 243. Not seeing any real difference makes me nervous that it isn't B12 :/

  • Hi,

    So sorry to hear that you will not be able to go on holiday.

    I wondered if your iron levels are good as my understanding is that iron , folate and B12 work together in the body.

    Are you on any medication for other conditions that might interfere with b12 and/or folate levels?


  • Thank you for replying.

    My ferritin level was 46 a fortnight ago. I'm trying to improve it (Spatone twice daily and Hemaplex) as I know that is not optimum for daily injections.

    No other medication-no other condition has been diagnosed...

  • Really hope that the insurance comes through and you get most if not all of the money back ... so when you are feeling better you are able to rebook the holiday or an equivalent.

    With the injections even small improvements count as improvements. Also, how frequently are you injecting? Some people do find that they actually need to injecting more than once a day. I don't inject more than once a day but I certainly top up with loads of supplements on days when I do inject ... and use even more on days when I don't.

  • Thank you for replying :)

    I'm injecting daily-alternating methyl and hydroxo. I'm also taking 3 x 5mg methyl linguals/day.

    It is early days but I had hoped for some improvements now. The only thing which has happened is that I have windows when my lightheadedness is less 'intense'...

  • There are different types of b12 so maybe you just need to change the type. Is this with the nhs? I think they use hydroxocobalamin, maybe methylcobalamin or the one beginning with A. Sorry can't remember exactly how it's spelled. There could be other reasons why it's not working for you too. But I'm no expert (clearly!) I'm sure other members will explain further.

    I am sorry you are too ill to go to Santorini, went myself many years ago. Keep that in focus and know that one day you will feel better and be able to fly to this lovely island. :-)

  • Hi,

    I think LtAngua is referring to adenosylcobalamin.

    I have read about some people who do better on cyanocobalamin. It seems to be a very individual thing.

  • I'm taking a combination of methyl and hydroxo.

    I know this can take time so hoping it's just that :)

  • Thank you- I will absolutely go some other time.

    I'm alternating methyl and hydroxo injections and taking 15mg in methyl sublinguals each day. Taking iron, folate, potassium (eg coconut water) etc ...

    Not sure what else I can do. I don't know if the lack of significant improvement is just the healing taking time...or if I've missed another illness.

  • 30 injections one a day is only 30 days (my maths is fabulous) which is not very long. Perhaps you have not noticed what has improved. My first was my hair which used to fall out and hang limply, I didn't even know it was a symptom until I found my hair had thickened up AND was curly again. It is not what I would have chosen to improve first but nice anyway. So perhaps your nails are better or something else you have not noticed.

    Sorry about your holiday.

  • Thank you for your reply!

    I know what you mean. 30 days is nothing in treatment terms but seems everything when each day is a challenge and you're waiting, waiting...!

    I think hairloss is one of my symptoms too actually which I also hadn't realised- just attributed it to reaching my mid 30s. My parting looks less pronounce- although I am also taking biotin to help :)

    I don't feel as tired most days- not that strange slump and overwhelming desire to sleep at least-there, that is one :)

  • Just keep thinking about the good things, it will come. It is very frustrating that it takes time and sometimes it seems as if it's getting worse. My legs were very numb, no discomfort but no reflexes, could barely walk almost nothing. Now they tingle, get cramp, keep me awake, wake me up, but I say "Hurray" they are coming back to life.

  • PS - it should read 'could barely walk, almost nothing working'. and today I managed to walk all round the ground floor of M&S (I hate shopping)

  • I don't think it's "just" a lost holiday, it's having to accept limitations and changes to who you are and how you live your life, and all without a proper medical diagnosis, which causes a degree of anxiety and doubt. So it's an understandable reaction.

    I can understand this too because I've constantly had to adjust my own expectations of how I live, I've just had to pull out of a group I run and have been very committed to. It's too stressful not knowing if I'll be up to it on the day or not (it's 50/50).

    Hope things work out for you, and that if you decided to go on holiday after all that it goes well.

  • Sorry to just jump in but this thread seems somewhat interesting, I've been taking 5000mcg methylcobalamin sublingual tablet for a little under 3 weeks now (was on 100mcg cyanocobalamin tablet for 6 weeks prior) at the start symptoms were improving but now i feel I've hit a wall, reading through some of the comments mention hair I've noticed that before treatment i used to get dandruff (never had this before) but now 10 weeks in it seems to have gone, now as people have said there are a few more symptoms i would have liked to have improved besides that but i understand that the severity of symptoms are taken in consideration during treatment and of course your main worry are the more noticeable ones, as you've said 30 days isn't that long but you've noticed that somethings gotten better right so that's a good start, may i suggest writing down your symptoms and once every now and then during treatment you look at them to see if anymore do improve


    P.s sorry you had to miss what sounds like a lovely place to visit due to b12 :(

  • That is a wonderful suggestion!

    I have had dandruff for years-perhaps I could hope it's related to B12 as well!

    It's strange because I've been on the sublinguals for 2 months now and about 2 weeks after starting them, my legs got better and I was walking around comfortably again. The lightheadededness decreased in severity. I also had very frequent urination, which I hadn't realised was a symptom, which also improved significantly. I upped to 15mg methylcobalamin in sublinguals and started experiencing severe headaches. I had to stop taking them for a couple of days and gradually reintroduce the methylcobalamin. In the 10 days it took me to get rid of the headaches and get up to 10mg/day without too many problems, my legs got bad again and the frequent urination returned. The injections and return to the pre-regression sublingual dose hasn't had any real impact on my legs this time around. I did a sort of full circle. Very strange and rather frustrating...

  • I too noticed a full circle of symptoms when i stopped the cyanocobalamin and went onto the methylcobalamin which didn't put me at ease and i did start questioning whether it is b12 related or something else as i also suffer with adhd and autism (i haven't been on medication for this for 6 years now so thought it might have had something to do with that) but all this started off with virtigo/dizziness and fatigue also the doctors said this wasn't the case but I'm still looking into it as i do have some psychological issues, i noticed i started walking differently before and during treatment too and my calf muscles would hurt like hell but I've not had an issue with frequent urination

  • Not dandruff, but flaking skin is another one that has gone, was like a snow shower when I took of my t-shirt.

  • It might have been flaking skin actually, now that i think more about it i couldn't see the dandruff in my hair when looking in the mirror

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