Thoughts on reducing frequency of injections

[Chickens44]

I have been SI EOD for three months now. Plus all cofactors. I have had the odd good day, but I have just reduced my injections to every two days in between and suddenly I feel rotten again. Weak, tired, flushing, and just ‘off’, especially in the afternoons. I do wonder if I should be reducing my injections just yet, although it is what Dr K recommended as all my levels are in good range now.

[Nackapan]

Doesn't sound like it is time to reduce your B12 frequency if your symptoms got worse when you did .

I'm suprised this doctor going by numbers too,rather than symptoms

[Orchard33]

I trust how I feel and my symptoms above all else. There are many variables in an individual configuration plus the duration of the deficiency.

[Jillymo]

I would have thought far too early to even consider reducing your injections.

Proof is you feel worse for doing so and I cant think for the life of me why this Dr would suggest reducing the frequency ! 3 months is no time at all and this Dr should not be going by levels now that your on therapy.

[ClaireWF1346]

I had exactly the same thing at 3 months (which was July for me). Vit D, iron and folate tests were all improved and my symptoms were much better so Dr K advised I tweak some of my cofactor frequencies and move to every 3 day jabs. After just a few weeks the breathlessness started to return so I emailed him and he advised that I go back to EOD.

He explained to me at my appointment, and likely did to you too, that it would be a bit of trial and error with the injection dosage as it's impossible to know how long I was deficient for and mentioned it's usually approximately 1 month of EOD for every year of deficiency. But it's not as clear cut and will definitely be different for us all as we all have different reasons for deficiency. I'm trying to live as normal a life as before so I think I am using my resources up with exercising, housework, socialising etc. I struggle to "sit and chill"! I would contact him and I'm sure he'll advise you to revert back to the frequency that worked for you. Good luck 🤞🏼

[Chickens44 in reply to ClaireWF1346]

I was surprised as at my original appointment with him he said he thought I would probably need EOD injections for at least a year considering how long it appeared I had been deficient. Luckily my deficiency doesn’t appear to be due autoimmune conditions, and I am addressing my gut dysbiosis.

[Chickens44 in reply to ClaireWF1346]

Also I can so relate to your not being able to sit and chill. I do spend time doing nothing, but I don’t feel I am really relaxing and I know I can feel better than this. I remember sitting outside in the sun one day a few weeks ago and realised how lovely it is just relaxing in the sun. And that is what I’m aiming for, the ‘sit and chill’ moments!

[ClaireWF1346 in reply to Chickens44]

Yes! When you do stop and take the peace in, it's lovely! I just find I get drained quickly by physical and mental tasks but I don't realise until I stop and then it hits me. Our stories are very similar and I think we've "spoken" before about trying to tackle the gut dysbosis issue. My latest is the FODMAP diet and I've realised certain foods that I've always had a reaction too are all in one specific group in the FODMAP system. So I feel less bloated after more than a decade! Time will tell if these adjustments and being gluten free will help in the long run.

How are you getting on with it? When you say you're addressing it, have you had some conclusive answers about the cause of yours?

[Chickens44 in reply to ClaireWF1346]

I saw a nutritionist about 5 weeks ago and she advised gluten free, and also reduce foods containing glutamate, which cuts your choices right down! I’m due to see her in two weeks for a catch up. But I haven’t noticed a difference really. I had stopped omeprazole 8 months ago and have been trying since then to get my good bacteria up to optimal level. I have done a few gut microbiome tests and have some good and some bad bacteria ups and downs. I’m taking Symprove, ACV, goats milk kefir and various prebiotic and probiotics. I don’t always have all these every day, but most days. But I still get bloating - but I think it might be due to nerve pain which I get under my ribs and across my abdomen, which causes inflammation and thus bloating. But I hope by addressing the B12 deficiency the nerve pain may lessen in time. But it may not, time will tell!

[ClaireWF1346 in reply to Chickens44]

I did feel less bloated (or at least less full after eating) soon after dropping gluten but it's been dropping onion, garlic, legumes for me that has actually softened my stomach. After over a decade of looking 6 months pregnant!! Did you find the microbiome tests useful? I have considered them but if the results just tell me to have more probiotics then I can just do that anyway. I am still only working part time as I can't cope with full time again yet so every penny counts! I sometimes feel like I'm trying to find a needle in a haystack and with gut dybiosis it's just a case of seeing if what were doing will resolve our malabsorption issues! I have also been suffering with what I believe is psoriatic arthritis (GP has assumed its early osteoarthritis and ignored symptoms like swollen fingers and eye issues) so that may be an underlying AI factor for me too. I hope you start to feel some benefits for your sacrifices soon! Keep in touch ☺️

[Chickens44 in reply to ClaireWF1346]

When you say legumes, do you mean kidney beans, baked beans etc? I do eat baked beans occasionally but don’t really eat any other kind. I do find peas go right through me.

The gut tests are interesting and do tell you what sorts of bacteria are prevalent, whether good or bad. I did one with the Chuckling Goat Company, which is very comprehensive and some of the results do need a bit of explaining. And it can take 7 weeks for results. I did one in January not long after I had stopped omeprazole and it showed I had a reasonable amount of good bacteria, but very high level of fusobacterium, which is a nasty little bugger and had taken over. I started on a good apple cider vinegar which was recommended. I may do another test with them soon to check it’s cleared, but it costs about £300, so not cheap. And then the wait for results. Some of the other tests can be cheaper and quicker but not as comprehensive. But sometimes I wonder if it’s worth it, as I’m sure there’s lots of people out there with lots of nasty bugs in their guts and are none the wiser and just eat what they want. So I think just making sure you eat the right stuff and avoid the rubbish will help to some degree.

I have been reading great things about kefir, but you need to get the good stuff. A lot of kefir products sold in supermarkets is added to dairy products and then pasteurised, which is nonsense as the pasteurising process kills off the good bacteria in the kefir which is what makes it work! x

[ClaireWF1346 in reply to Chickens44]

Yep, kidney beans, chickpeas, garden peas, baked beans, wheat, onion, garlic are no-gos if I'm on the right track with this FODMAP thing. Well, I could get away with something like half a tablespoon and then risk adverse effects. These foods have always made me super windy 🤪 but since I've cut them recently, I've been so much better. I would have eaten garlic and onion almost every day as I cook from scratch and everything tastes better with them added IMO. Whether this is anything to do with my B12D is another matter.

Thanks for the info on the microbiome tests - if I continue to have issues into next year after the changes to diet, I will look into it. I have been making my own kefir or buying a decent one when I've used my cultures up but I haven't noticed any difference from it, although I guess it's all about what's going on inside! I am supposed to avoid lactose too but I make it with lactofree milk so it's all good. It's quite nice to know someone else is on the same path as me 😊

[Chickens44 in reply to ClaireWF1346]

Yes, we do seem to be travelling the same road! I did a low FODMAP at the beginning of the year and it didn’t help. Like you, I like to cook from fresh, and do think onion and garlic add something. I always add lots of herbs and spices to things too. You can get something called Asafoetida, a powder, which gives things an onion flavour, but it’s not onion. I have just done a shop and bought some different fruit and veg, as I have been reading you should vary your greens and fruit each week, and I do tend to stick to my favourites. I bought some pak choy, coriander leaf, and some frozen fruit to smoothies. My gut should be grateful I’m doing all this for it and start to behave itself!

[ClaireWF1346 in reply to Chickens44]

Same here - my veg box has always had plenty of greens but I'm making a real effort to meal plan with all different veggies. Apparently the aim is 30 different ones per week. I've read about asafoetida but need to make a trip to a decent supermarket to get one that isn't full of additives. Chives are low FODMAP so good too as a replacement and the green parts of spring onions (or small amount of the white) and I cook with garlic infused olive oil which is really good!

[Nackapan in reply to Chickens44]

Also no good if diary free needed! One of my daughters had severe digestive issues . Was on the verge at one stage being so undernourished it was suggested being tube fed.

I made liquid soups of anything .

Trial and error.

Adding salt and sugar into for hydration .

Sipping throughout the day .

Dire times

As her brain stopped working properly.

She had omeprazole and other drugs for nausea and transit problems.

She then took a long time using fodmap as s guide to work out how to eat and what to eat.

Bedbound mostly .

B12 injections started after eventually being tested . ( brain started working )

She was also left with POTS due to severe b12 ,folate and ferritin ,vit D deficiency.

Had megobolastic anaemia.

She personally couldnt get tested for celiac disease as couldn't tolerate eating enough gluten for the test!

She is diary, gluten snd Fructose free.meat free .

However

Presently she's managed to re introduce fish into her diet successfully and chicken.

Red meat still is a no no for her .

Eggs took longer to reintroduce starting with food with egg in then tiny amounts .

It taken years .

Still has days when the balance of foods 😕 not right for her.

It's changed her life looking into her diet .

It's so complicated but if you can work it out really with the effort.

The hospital dietician supported her rather than lead as soon realised her ideas just wernt working .

She needs 10 weekly b12 Injections but daily 400mcg folic acid.

And a multuvit .

Low iodine was eventually back into range snd maintained by diet change and the amount in a multivit .

She had NHS endoscopy and regular full nutritional blood tests via the hospital.

Hope you csn decipher what's right for you .

It does take time and copies notes .

[ClaireWF1346 in reply to Nackapan]

What a terrible journey your daughter has been on. As you say, it takes years and even then there can be a flare up for no apparent reason. I find that if I'm nervous/stressed about something, I will almost instantly bloat. The connection between the gut and our other bodily functions is so intricate! Wishing your daughter well 🤗

[Gobbozoid]

hi. I’ve just been told by dr K to up mine. I’ve gotten really ill again, after losing a beloved pet, another one is in the vet hospital, I got ear infection too, and I got Covid. He said all the stress etc has crashed my system and that I need to increase frequency for 2 weeks to daily. Maybe shoot him an email he replied to mine within 20 minutes

[Myoldcat in reply to Gobbozoid]

Glad you've had some clear advice and hope it helos.

[Gobbozoid in reply to Myoldcat]

I hope so. Rather than injecting and getting better I keep having things interrupt the healing process. Even now I am in agony with bladder pain again. Hopefully this will be the last time. I need my years worth in me and this nightmare to abate.

[Myoldcat in reply to Gobbozoid]

Hoping you now have an uninterrupted time to heal x

[Gobbozoid in reply to Myoldcat]

Would be nice. I’ve been stuck indoors for 9 days straight and it’s making me go insane.

[Myoldcat in reply to Gobbozoid]

Horrible! I'm on day 3 of a migraine, this B12 malarky is certainly a trial.

[Chickens44 in reply to Myoldcat]

It certainly is a malarkey, I keep thinking up new words to call the process, but unfortunately some of them are unprintable on here 🤭. I’m suffering overheating and extreme fatigue today. I keep thinking it’s something I’m not doing or overdoing, but really I think it’s just the whole blooming process! 🥴

[Nackapan in reply to Gobbozoid]

You obviously need to take the timeIf feeling' stir crazy' staying in you are getting better .

I had to wait a very long time for that feeling

[Myoldcat]

I was feeling great a couple of weeks ago but now a bit rubbish - i think i slipped on iron and folic acid so trying to get back on track and also injecting ever other day rather than every 3. Such a juggling act! Most exciting thing recently is changing to finer yellow needles instead of orange...😅