No loading doses allowed

Gp receptionist rang to invite me for my first b12 injection but says the nurse told her I don't qualify for loading doses because I'm not clinically deficient now since starting to use sublingual b12.

The sublinguals have raised my serum from 153pg to 900pg over five months while I've been fighting for injections.

I know supplimenting skews blood results to some degree but what I'd like to know is does this rightfully mean I don't need loading doses and will the one injection be enough to get my levels right up there?

16 Replies

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  • The point of loading doses is to get levels up from low to normal quickly. So I can see the doc's point.

  • Hi Steap. Re: B12 levels - here's a link to a reply I left you earlier today about the relationship between B12 levels and symptom relief (you might not have seen it yet):

    healthunlocked.com/pasoc/po...

    In short, and to re-cap - B12 levels are no indicator of the efficacy of treatment. The thing that counts is symptom relief. So...'getting your levels right up there' is not the issue - the real issue is getting your symptoms gone 😄. So, you need to have injections frequently enough to keep symptoms at bay. If your symptoms return before the next injection is due, then you most likely need more frequent injections.

    I agree with fbirder about the loading doses.

    Will one injection every three months 'work' for you? No idea - but it's not enough for many who post on this site - me included.

    You do have neurological symptoms so you could present evidence to your GP and make a case for having the neurological regime of injections (either verbally or in writing - more difficult for them to ignore a written request if it's supported by evidence - which will go on your medical records).

    And I'd certainly do this if what you've been prescribed does not relieve your symptoms.

    👍

  • Thank you foggyme.

    I read with interest today your first posts on healthunlocked.

    I can see why you are so passionate having been through the mill yourself.

    It's a horrible illness because it effects you both physically and psychologically.

    The latter has a massive impact on those around you and it's things like this forum and its contributors that make you realise you are not mad.

    Thanks also to everyone else too.

    I wish someone could reeducate all doctors and nurses in one fell swoop.

  • To get an idea of why their attitudes and treatment of you feels so bad you could try Googling "Recovering from Gaslighting".

    I also recommend you go by symptoms not blood results. I'd be dead if I hadn't! If you need it, you need it to prevent further damage which may not be reversible in time.

    Now you have had a jab and found that you don't get a bad reaction, have you considered self injecting? For more information, including sources of supplies you could look up my profile by double clicking on my name and see my post "My Experiences".

    Good luck!

  • I get my first one on Thursday next week.

    I'm taking things slowly because I've found too much sublingual hydroxycobalamin makes me a bit jittery.

    I actually reduced my dose to 500mcg a day and it was good for a while but now doesn't seem to hit the mark.

    I'm not sure though if I was maybe doing too much on the days I took extra so wearing myself out.

    It's so hard to get a clear picture.

    It's not so much the fatigue that bothers be although it's awful it's the mental bit.

    I find it hard to cope with general noise and it really upsets me having to ask my children to be quieter.

    Family meals are hard because even a fork hitting a plate goes through me some days.

    I could almost cry but I just keep it all in.

  • Hmmmm, difficult one, isn't it? I am sorry for you.

    I find balancing all the things I need hard too. Just when you think you've cracked it your requirements then change and you need to readjust things again.

    Have you looked into magnesium? That can help that sort of thing and I think it could be well worth Googling it and maybe trying a little to see.

    Potassium and folate are good for anxiety so you could look at those too because they also calm nerves.

    Always try only a small amount of one thing at a time and give it several days to have an effect. If you are careful you can get good results in time.

    Best wishes!

  • Thanks Denise

    I've just stopped my multivitamin because my folate was above range at hospital two weeks ago.

    My phosphate was too low then apparently too.

    I'm unsure as always what it all means.

    I had to travel to Scotland for a funeral Monday into Tuesday and it's wiped me out totally. It's Friday and I'm pretty much stuck in resting.

    A year ago I was working 60 hours a week and could drive for hours without a care.

    I had to ask a friend to drive to Scotland while I slept in the car.

  • I had to drop in here having just read " someone hitting the plate with a fork " that soooo hit a nerve , no pun intended with me....I can hardly ever cope with eating in the same room as others and have over the past few months of misery taken to eating alone in my bedroom ! Why ? Because the sound of cutlery on crocery drives me crazy IT HURTS as does someone stiring tea or coffee when the spoon touches the cup.

    My family think I am being rediculous and making a fuss.

    Everyday gets harder and harder and I do not have children in my home so goodness knows how you cope ... My heart goes out to you.

    Ell

  • Sorry to hear that. It's not nice is it. I don't think any amount of explaining would make someone who hasn't experienced it believe or understand it sadly.

    I think it's mostly cause by a lack of good rest/sleep or taking b12 too early so it wears off before tea time.

    It's one of my most annoying symptoms. I think we get over sensitised to all external stimuli. We feel every sound, vibration or flicker of light. Even my eye floaters startle me.

  • Hi ellj and all...I can so understand the noise thing...how on earth do we explain to others that noise (and even things moving around us) can cause physical pain and the shut down of cognitive and all functional processes 😖)

  • Hi Steap. Yes...it's been a long haul...and still is on many days 🤔.

    Hadn't realised that I was passionate about all thing B12 deficency related....but now you mention it, I suppose I am...by necessity...unfortunately 🤔.

    And yes...like many here, I was initially concerned (almost convinced by GP's) that I was actually going mad...not any more 😄.

    Think doing as much as I can on the forum (though often not as much as I would like) is my only way of trying to make a difference...and re-pay all the kindness and help I've received here...

    Onwards to better health for all 😄😄

  • You know your own body. If you know anyone going to Spain you can pick hydrocobalamin or any other derivative of b12 over the counter. It's dirt cheap. I was very symptomatic but had no idea that I was b12d until blood and if I remember I was at 33 for my b12 levels. I got the initial loading dose but was still ill. My GP at the time laughed at me when I asked for more and told me I was depressed. I've since stuck two metaphorical fingers up to the docs and I self inject. I wish it didn't have to be this way and I could have support from the GP. After a year of 6-8 week injections I now guess when I'm due which isn't ideal. If the GMP was more knowledgable I feel we could manage our condition better

  • In a way I was lucky because I was self-employed and had to try work and was on the point of dying (or hastening my end!) so I had nothing to lose so I could afford to take advice from the brilliant people on here and the Facebook support group I also belong to and just trial things until I found a combination that worked for me, regardless of what my blood results showed. I think my body was so badly damaged by so many years of deficiency it didn't work like healthy ones do and the cells were so inefficient, even if my blood levels were so high that I should be dead, I still needed more just to survive. Odd scenario that I definitely wouldn't recommend to anyone else but after about 18 months of intensive supplementation I finally became well enough that I could start to reduce the levels!

    I still can't get enough potassium from my diet and multivitamin and mineral tablets so I add in LoSalt and find this helps loads.

    I think the potassium will help you - I hope so!

  • Do you have a good quality of life now?

  • Unbelievably so, especially as this time last year I didn't know if I was going to live to the end of the week, could hardly talk and my memory was so bad I hated seeing anyone because I couldn't recognise them, let alone remember their names. I needed to spend 12 to 15 hours asleep each day too!!!

    As well as working (I mostly manage an orchard and vineyard, show cattle, work in a pub and help with a big country accommodation venue but I do 101 other things as well), I'm now able to look after myself well enough that I started going out with someone in October and have now just been given a horse too!

    My hair has started growing again and I have finger nails now! And lots more besides!

  • It's very heartening to hear how well you are doing now, deniseinmilden, when you were so ill before. Steap, I hope this gives you a bit of a lift too.

    It is really awful to find the things you most enjoyed and looked forward to turn into massive chores, because you already know you won't be able to cope well. My heart sinks sometimes when I hear we have my partner's 4 year old granddaughter staying over, even though I love her. It's difficult to plan to have a good day on the day that counts isn't it? I keep trying though, and the thing with kids is that they know absolutely that you love them and can sense when you are not well.

    Just had a conveyor-belt operation (keyhole surgery) on my shoulder on Wednesday and can't for the life of me remember any instructions given: appointments, aftercare, physio or even what was actually done...don't know whether to blame the heady cocktail of drugs or the B12 deficiency!

    Please don't get too downhearted, Steap, it will take a while, but Denise got there eventually and we can too. Sending hope your way.

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