Is it worth me getting supplements or just wait?

Hello again

So I had my 1st of 6 of my second lot of loading doses yesterday but due to no nurse time the next one isn't until 3rd Oct. Meanwhile I've booked up a dr. appt for next Tues to try and persuade them to change the 2 weeks to what the NICE guidelines say for issues with neuro symptoms which is every other day until no further signs of improvement.

Only thing I've noticed since last night is my confusion has lessened and a bit less brain fog, but still wobbly & no energy, and the arm where I was injected feels a bit stiff which I haven't experienced before but perhaps it's just not used to the injections.

I asked about the oral spray in the pharmacy and they said it was of little use as the injections are 100x as strong, but I'm worried about slipping back further over the next week and a bit so was wondering whether to get anything that could 'prop me up' - of course if it's only the injections that work then there's no point but I don't know that at this point. Or do I just wait it out? Nurses don't really care if I'm falling over so not bothered about what they think of me, just seen the light when I've had the B12 & want to be like that again, got a life to be getting on with & all that jazz & fed up of being stuck here!

[Hidden]

Hmm... searching previous posts suggests not supplementing - handy feature that 'related posts' block, innit!

[greenbexy in reply to Hidden]

Not supplementing usually concerns those, who haven't had the intrinsic factor or any other test for pernicious anaemia, those who 'think' they might be deficient, as it skews any bloods taken after supplementation. Leading to not being diagnosed with low B12, therefore denied injections.

It's my belief that once injections have been given, it would be pointless to retest B12 unless you think you aren't absorbing any. As you felt better, you must be benefiting from the B12 injections, so unless you are going to have any other tests such as IF or MMA I would supplement away!

[Hidden in reply to greenbexy]

Thanks greenbexy - yeah I went and read it again and realised I'd got it wrong, as you say if I hadn't had the tests yet then it may screw things up.

I think it takes a while to know how the jabs effect - I'm feeling better now than I was earlier today, had a bit of a dip when I thought if it is PA then it's all just gonna flow away & might be a wreck in a few days but if it's keeping it in stores then should get better, so hopefully tomorrow will feel a bit better, then I'm even more sure it's not PA.

[greenbexy in reply to Hidden]

To be honest I also thought that I had some sort of digestive disorder before I was diagnosed with B12 deficiency. I had coeliac tests, endoscopy and colonoscopy being sure that something would be found. Nothing was.

I had really bad acid reflux, even had a camera up my nose to look at my larynx which had been damaged by the acid. All in all I now believe it to be low acid, which then caused food to just sit there, not being broken down efficiently and digested. So I then,I wasn't absorbing the vitamins from food, but actually caused by low B12, vicious circle, so to speak. Low B12 can cause diarrhoea!

[Hidden in reply to greenbexy]

It's certainly going to be interesting finding out, I just wish I'd known about B12 years ago, perhaps it wouldn't got this bad, pretty scary tbh & ppl just don't believe you but been coping and not in various ways throughout my life so just glad I've found out, felt incredible the other week after the first set of loading doses, hopefully I'll see that again after the next few & convince them not to stop after the two weeks if still improving!

[greenbexy in reply to Hidden]

Good luck! I really hope you do convince them! It's wonderful feeling 'normal' again even if is only for a few weeks!

[Hidden in reply to greenbexy]

thanks, fingers crossed - can't imagine what position I'd be in now without all your lovely support here!

[margareta12321]

Hi Steve,I tried other products including patches which didn't help.Mine is a long drawn out story but to cut it short after my second dose of loading injections which took a massive fight to get I'm going back to self injecting when I need it.

[Hidden in reply to margareta12321]

Sorry to hear that margareta12321 - piecing all the bits of history together I'm currently swaying the way of celiacs disease seen as 10 years ago when I lost a lot of weight, was going to the gym, swimming, cycling, etc. it was after I gave up the wheat and carbs.

Being the n00b here excuse the n00biness but you tried the non-gluten thing?

[margareta12321 in reply to Hidden]

No Steve never tried it.

[Hidden in reply to margareta12321]

Now I don't know whether you're joking or not, and I don't know whether that's my anxiety/paranoia or not.

GIMME B12

[margareta12321]

I really am a porridge loving B 12 deficient Scot.😊

[Hidden in reply to margareta12321]

Have to admit I do like the stuff, it keeps me steady for the morning - used to have eggs sometimes but volcano heartburn and so on.

Although I do like the Mesa Sunrise cereal with Rice Milk (normal or almond) but been on low budget lately so saving pennies with the porridge. Have to have honey in it, diet not how it was 10 years ago, I see that's what I gotta do, felt bloody great then, went down from 17.5stone to 12.5, now back up to 17.5

[margareta12321 in reply to Hidden]

I think the chopped banana is nice and sweet I'm not a fan of honey.Now your getting treatment and your energy returns you should lose weight.Ive lost a stone just by walking more.I was so knackered I was doing nothing before.

[Hidden in reply to margareta12321]

Yeah I need to re-introduce bananas for the potassium and stop the honey. Been stuck at my poor old dad's house for the past year and a half trying to figure out wtf.

Did get out for a few cycles over the summer - 8.5 miles in 45 mins, not great but not bad. Not quite got the energy right now though, looking forward to the injections, I hope I can get it up to a decent level I'm not drooling & stuff!

[Sleepybunny]

Hi,

"you tried the non-gluten thing?"

I had IBS type symptoms for several years (no interest from GPs at time)and I used to get allergic lumps on my back. Coeliac tests were negative but IBS and lumps went when I gave up gluten, and cut down on dairy and sugar.

Glad to hear you have been able to go cycling. Even though my symptoms improved with B12 and diet changes I do not have the strength or stamina for cycling.

[Hidden in reply to Sleepybunny]

Hey Sleepybunny it's getting to that 'anxious' stage of the day - had the almost fall asleep bit, now not looking forward to the confusion bit, hoping that won't come along again as had first of 2nd lot of loading doses a couple of days ago.

I'm worried about how long this "short window" is before permanent damage to nerves is (if not already) as although got the Doc next Tuesday as booked up to ask her to change the 2nd two-week loading dose to ongoing as per the NICE guidelines, next shot not till a week Tuesday.

I don't want to self-inject and I don't want to go behind their backs, but if it's the difference between the ability to feel 'normal' - as normal as I felt for a couple of days during the initial loading doses which I hadn't felt for many years, then I'll do anything!

I know I'm probably overreacting and I'm sure I'm not the only one who wanders in here with the same, been spending all day reading posts gathering bits of info and correlating - lump in my throat the doc said was fine but could be issue, the fact I eat radishes and watercress every day which wouldn't help that, and so on.

I would order the tablets but I hazard a guess they wouldn't work then I'd just be a few more days down the dozey line. Gonna try and just hold out till Tuesday to see what she says but also feel a little silly waiting when I have the power in my fingers (or should I say "whilst" lol not funny really) just to order some stuff and go jab myself and probably end up in some kind of Pulp Fiction scene.

I digress. What was I saying? Oh yeah, self-injecting when only 9 days till next injection but suffering neuro issues I would prefer being given the best chance they have to repair, that was it.

[Hidden in reply to Hidden]

Decided to get the books you recommended on kindle instead to keep my brain busy, plus another couple that came up on a search for b12, added all 5 to a shared list 'B12 Kindle Books':

bit.ly/b12-kindle-books

[Hidden in reply to Sleepybunny]

Dairy was a biggie for me, I used to be 'bunged up' all the time. Perhaps that's been the issue staying here for the last year, diet's gone haywire lol.

Re the exercise - you swim? I love swimming but haven't had the cash or transport to go lately, can't wait to get back. That's usually a bit easier as you've got the water to support you and there's numerous ways you can wave whatever bits of your body you want around to move.

Once I get over the paranoia of walking from the changing room to in the water I'm fine