Does anyone else SI every day?

[MrsTuft]

Would be glad to hear thoughts / experiences …

[TroyNZ]

I have been self injecting every day for over 4 years. I was on every other day four 4 months prior to that.

[wedgewood in reply to TroyNZ]

I’m wondering , because you call yourself “TroyNZ, ” if you live in New Zealand? If this is so , I hope that you don’t mind me asking if you can obtain your B12 ampoules over the counter ? If not , I woukd be very grateful if you coukd tell us how you can obtain them . I could not find out from your bio where you live. Sorry to bother you . Thank you .

[TroyNZ in reply to wedgewood]

Wedgewood, Yes I am from New Zealand (just useless at filling in my bio)

and, Yes B12 can be purchased over the counter. But... a lot of chemists do not know this and I got turned away from many before I found one that would sell them to me without the obligatory lecture on how "too much B12 is bad for you" & "it's just a placebo" & "this should not be available over the counter"

Consequently I purchase my B12 online (either from NZ or Australia)

From following this sub for a while it seems that NZ is only slightly ahead of the UK in that we can, technically, purchase over the counter. But the same sort of attitudes are prevalent throughout the medical profession (with some enlightened exceptions)

My GP is awesome and is ok with me managing my B12 myself

However, I was recently diagnosed with Hairy Cell Leukemia and, after a lot of discussion, I had to just tell my specialist that I would not change my B12 regime and he would have to deal with that

[wedgewood in reply to TroyNZ]

Thank you for your reply . Yes it really is so awful , having to deal with the medical profession which is so very ignorant about P.A./ B12 deficiency. Glad that you have found an intelligent GP..

Wishing you the very best in dealing with your health problems .

[wedgewood in reply to TroyNZ]

i just went onto an Australian online pharmacy (yourdiscountchemist.com.au) and found injectable B12 , but there was a stipulation in red that the item could only be purchased with a prescription. !

I only ask about this because we often get people from all over the world, who are desperate , and need to know how to obtain b12 ampoules without prescription. Could you please private message me with the site address of New Zealand or Australian online pharmacies who will sell without prescription? Thank you so much .

I find it strange that Australian pharmacies are allowed to sell OTC, but don’t seem to actually do so .

[TroyNZ in reply to wedgewood]

pm sent

[MrsTuft in reply to TroyNZ]

I started every other day too be my neuro symptoms really improved when I upped it. You’re the only person who replied so not too many of us then?

[deniseinmilden]

I've been daily SI 1.5mg in 1ml for 7 years and used 1ml ampoules for several months before that.

Due to malabsorption and metabolism issues I need(ed) huge (theoretically beyond toxic) levels of other vitamins and minerals, especially in the early days.

I've gone from barely being able to walk or talk and being an emotional "leaf" to at least 80% of my normal self. I still have good and bad days but on a best day I'm not far off "normal". 🤪 I compensate a lot by having as good (broad and balanced) a diet as possible and keeping as fit as possible by working hard.

It took 4 years for my brain to repair enough for me to be able to talk fluently again. When I'm tired I still struggle for words (the lawn mower became the "green vacuum machine" the other day and that sort of thing!) but I've got most of my vocabulary back.

I had pretty bad neuropathy - couldn't feel my feet at all - and my toes are my indication of potassium levels: if I lose the feeling in them I know I need more. I still get my left shoulder feeling like someone is waving a stinging nettle over it when I'm tired, and last week, when I'd got short of other B vitamins, my forehead was numb/itchy again. I always have tinnitus but rarely burning hands, the "vibrating phone" feeling or other nerve problems.

I still remember the Tuesday morning, probably about a month after I started daily SI, when I woke up and realised there was something alive, and not the cat, at the bottom of my bed - it was the first time I'd felt my feet for yonks! It was a huge surprise/scare!

Talking of memory, I lost most of my memory input ability for over a year and it was patchy for a couple of years. I still have a significant time-warp in my life where I'm missing those two years and quite a bit either side. My memory recall was affected much worse and probably took about 6 years to be reliable (and allowing for tired spells even now). Because I'd had to learn to use my phone to remind me of everything, I still use that for practical stuff and it gives me a bit of "luxury" memory to use for things like what friends have said.

Before I started injecting I couldn't even remember my neighbours or the people I worked for, my family or friends. Life was hauntingly lonely. I do still have name blanks occasionally and sometimes struggle to recognise people I met when I was bad, but navigating life is not the constant panic it once was!

To start with I'd get odd "good" hours and then occasionally days. It's only this last year that I've mostly stopped counting my "good" days, or weeks, because I'm finally "good" a reasonable amount of the time.

I'd become an emotional wreck and felt like crying - overwhelmed with emotion - if anyone spoke to me, or I thought of something (rare!), good or bad! After a while (couple of years?) I settled down and then had a time (year?) when I didn't feel anything which was also pretty awful. Eventually my normal emotions and enthusiasm came back and I now know if I'm starting to feel "flat" and don't want to do things it's time I gave up and just went to sleep.

I still need about 12 hours a day total rest and of those hours I need to be asleep between 9 and 10 hours average, but I work hard and play hard when I'm awake!

[Nackapan in reply to deniseinmilden]

You give me great hope.I'm at the 4 year mark.

Lost years are so strange.

My brain definitely 'waking up'

I'm so glad to hear you are finding a way through .

Hard work in itself.

My latest 'test' is trying g to have lights on in the house . Miserable early darkness got me to bed last yesr as couldn't safely move.

Set off head stuff.

Bulbs hard to find as 25w

One 'light' room at 60w Pearl not overhead, as one daughter abs husband living here at present. .

I was suprised to see her using a phone light to look at something.

As so bright in there for me .( they won't get too comfortable) cars love the extra bed ( have 5 now) one got to 18. Oldest cat we've had.

On a bright sunny day the surgery had flourescent lights on??

I actually questioned the need .

Such a waste.

They hadn't even noticed .

I wonder if that will happen to me one day 🤔

Glad it's mild out there for your work at present.

I've 3 of the cats to get to the vet today.

Vacs.

Another test lol.

Had a trial run with one as went on the wrong day .

Cat a bit confused too lol.

I was usually very good at remembering but I do have to have a memory for mum too !!!

Hope your day a better one.

[deniseinmilden in reply to Nackapan]

Good morning darling girl!

Thank you for your wonderful reply!

18 is a terrific age! Well done! My first cat left this world at 15 but my second one was only 12 when he got skin cancer. Just terrible.

I've got two girts now - a stripy ex-feral person who is as canny as they come but afraid of her own shadow, and a black hairy darling who had been abandoned in a ditch as a still-blue-eyed kitten! I took her home in a hamper basket I happened to have in my car and Miss Stripy instantly said "my kitten" and that was that! She even pretended to suckle her and everything!

I'm so pleased to hear that you are making some improvements - how you were to start with was completely impossible, wasn't it.

I'm lucky that I live alone and although I don't have the head fizzing and crackling you have, I'm not keen on bright lights, especially when I'm tired, so I can knock about in the semi dark because I know where things are! I've got a 10w equivalent "night light" that I managed to find and other than that I've got a little plug in light that has a daylight sensor and just glows from dusk to dawn. It's just enough not to trip over a black cat in the dark!!

As you know I live in a rural area which gets jolly dark with literally no lights at night for miles so I adjust readily to the dark and don't need much light to see enough to get about. It wasn't until you joined us that I realised my light sensitivity was possibly in part due to the B12d.

I'd just put it down to having blue eyes - but I think you might be fair too?

You have so much going on and care for so many people, furry ones included, and us on here, you do brilliantly to keep everything going!

I always think that trial runs to the vets, intentional or otherwise, are really good for pets so they don't think it's always a ticket to an injection or similar!

I'm not sure if I'll be able to take Mrs Stripy back to the vet again though - she did the James Herriot Wall of Death (thankfully without the dysentery!) when I took her to be spayed, despite my copious warnings!

The four year mark was quite a turning point for me and I went from being a constant nightmare to "doable".

I've had another major step up at the six year stage from "existing" to occasionally "living" which is great - I feel like there's the potential for a reasonable future ahead. Some of that is due to getting help with the chronic pancreatitis and so being able to eat better and learning more about managing my heart arrhythmias but I'm sure there's quite a degree of recovery from the B12d in there - and it's only because of that recovery that I've managed to get help with the other things!

I'd better crack on now as I've got an acre of wild garden to tame today (!) - well, try to!

Good luck at the vets! Don't get too exhausted. xx

[Jillymo in reply to Nackapan]

Strange but I am exactly the same and simply can not tollerate bright lights and as for the sun it blinds me. I had to have a special film put on my windows to stop the glare.

I also bimble about in the dark quite happily and simply cant wait to close the shutters at the end of my day which can be about four to half past. I recently brought some lanterns for the opposed power cuts but find myself using them in the early morn rather than put the bright lights on. I never put the lights on if I get up in the night for a tinkle or go to the fridge for a drink. I have just had an eye scan so will be interesting to get the results.

I am like yourself a great animal lover and my old tabby cat ( Suki ) lived to be 20. Towards the end she spent most of her time in the bottom of my wardrobe which I wedged open with one of my shoe's.

RIP Suki 😻

[Jillymo]

There have been times when I have had to inject twice a day just to be able to function. Your not alone there are many that inject daily.

I am feeling a much better for it albeit I do take other vitiamins along side such as folic acid, vit D and iron.

[MrsTuft in reply to Jillymo]

Thank you.

[flosslechops]

I have been SI ing for the last 4 years at least once a week,often more, but after diabetic medication made me very ill earlier this year I too have gone on to daily jabs.Am currently med free and feeling much better despite high blood sugar(I have no diabetic symptoms when not on medication)

[MrsTuft in reply to flosslechops]

That's worrying as high blood sugar is so damaging to the body whether you have symptoms of not.

[flosslechops]

I know,I was told treatment is the same whatever the cause and I've been through every type of medication,all with severe side effects(including 3 types of insulin)my latest hba1c was 142mmol,I think its partly genetic(b12 d) and partly the fact I had a total hysterectomy when I was 44,I have just started to look into the hormonal aspect,but as with b12 d doubt I will get any where with docs !!

[MrsTuft in reply to flosslechops]

I'm surprised an endocrinologist lets you keep your blood sugar that high. It can damage your nerves, your eyes, etc. I'm so sorry. I'm coeliac with blood sugar issues but not diabetic - only hypoglycameic and the endocrinologist was fab. I also had total hysterectomy at 45 but all my issues started way before then - it just doesn't help! HRT is a life saver.

[flosslechops in reply to MrsTuft]

I saw 2 endo's 2 years ago,one said I look too well to be ill,I said why do I have high blood sugar then?he just snorted at me and that was that,the other one was lovely but he got distracted and nothing came of that appointment,it was just as hospitals were shutting down for covid.I recently went for an appointment with diabetic medicine and was only offered more insulin doc saying thats all they could do,I asked for genetic testing but was refused saying I did not have enough family history despite one of my brothers recently developing diabetes too(where do you start?)Did your coeliac /hypoglycemia get worse after your hysterectomy?I've just doubled my hrt to see if helps after stopping it for three weeks a couple of months ago to see if that made a difference-it didn't!

[MrsTuft in reply to flosslechops]

Your endocrinologist sounds awful. Mine was very thorough. Said blood sugar issues can go hand in hand with coeliac disease. I sorted my blood sugar issues myself by giving up sugar and eating more protein. The only issue coeliac disease gives me is malabsorption. My hypoglycaemia is fixed. The only thing I notice is I can’t do anything like Keto / if I get to stop all carbs I becomes very dizzy and weak. So I eat small healthy amounts. My hysterectomy has made my migraines worse so I’m battling with that. I would not be able to function without HRT as no ovaries from age 45. I also wouldn’t be able to ‘double it’ - that would make me so ill - I had to titrate it slowly and carefully. I’m still concerned your blood sugar is that high. I hope you get it sorted. X

[flosslechops in reply to MrsTuft]

I was tested for coeliac-came back clear-I'm like you though,tried carb free,made me feel faint,low blood sugar symptoms despite high sugar readings.Same here too-no ovaries -I get cyclogest 200mg from gp as hrt as estrogel which I used until aged 50 made me very fat and gave me migraines also,I find the natural progesterone much kinder,that is why I have been able to double it,just got to ask gp for the 400mg now ,I feel so much better after just a week,I'm hoping it might have a positive effect on blood sugar,but takes time to see any results,bit like b12

[MrsTuft in reply to flosslechops]

the gold standard fur diagnosing coeliac disease is eat lots of gluten for at least six weeks then biopsy. If you didn’t do that you don’t know you’re not coeliac. The get Id blood test is also useful. I didn’t get on with Oestrogel either. I’m on Estradot patches.

[flosslechops in reply to MrsTuft]

I tried the patches first after the hyst,but just as bad as estrogel for me,I had a blood test but wasn't told which one,gp's can be very vague,to say I have b12d I've not had a lot of problems with gastro troubles,reflux,indigestion,diahhorea,etc,like so many who post here(other family members do,I seem to have escaped that aspect),but I will ask gp about it again,thanks for your advice

[MrsTuft in reply to flosslechops]

that should have read the genetic blood test is also useful. The regular one not so much…

[flosslechops in reply to MrsTuft]

I'd like genetic testing-nhs website is all over it-'just ask your consultant' ,the reality is(for me at least) consultant says no🙁I have just done the 23andme one with the health bit,not holding out much hope for any answers though

[MrsTuft in reply to flosslechops]

A decent gastro will do it in complex cases - it's just a blood test to see if you carry the gene for coeliac disease. If you have it, you could have CD at some point. If you don't, it's very unlikely. This is helpful.

[LFKent]

Hi MrsTuft.

I'm in my 4th year of daily SI together with co-factors. I began with 1mg but due to supply issues recently moved to 1.5mg and I'm finding it much better.

Records of my low B12 date back to 2002 and symptoms probably date back twenty years before that. Once on treatment the NHS withdrew it twice. My health suffered badly the second time and this finally prompted me to research PA/B12d & take things into my own hands. I'm so much better now but feel I had a lot of healing to do and don't think I'm finished yet.

I hope that your SI frequency is helping you address your symptoms and to feel well.

[MrsTuft in reply to LFKent]

Thank you that’s reassuring. I’ve only been SI ED for six ish months. I wonder if I should try EOD But my neuro symptoms aren’t entirely resolved yet so I think I’ll keep going. I use 1.5ml Pascoe too.

[LFKent in reply to MrsTuft]

I've tried to move to EOD a number of times but it always comes back to bite me in the b*m. A lady is referenced in Martyn Hooper's book What You Need to Know About PA & Vit B12d (page 152) who injects 1ml/5mg of methylcobalamin three times a day as recommended by her physician. The lady is a practicing GP. 🙂

[MrsTuft in reply to LFKent]

That’s fab! I suppose I’ll have to wait and see what ends up my norm. X

[B12life]

I have been SI'ing daily 1mg / 1ml for 1.5 years now. Tried to space it out many times with having my neurological issues just come back. I am about to start trying to inject twice a day to see if that improves things.

[MrsTuft in reply to B12life]

I’m so scared of my neuro syms coming back to even try downing yet. My migraines aren’t under control yet and my right knee I’m still doesn’t have normal sensation plus I’m still tired. Better than I was but not better yet. I think I’ll try EOD when I feel better. I wish you well. I’ve heard twice a day helps some people.

[B12life in reply to MrsTuft]

You might be interested in this for migraines if you haven't tried this already. If you have, I would be curious to know if it helped:

pubmed.ncbi.nlm.nih.gov/152...

[MrsTuft in reply to B12life]

yeah it gave me severe insomnia! Which is bad for migraine. I’m under a top migraine consultant. - they were well controlled until I got covid sadly.

[B12life in reply to MrsTuft]

Thanks for letting me k on. Sorry it didn’t work, I’m glad you have found a good migraine consultant.

[MrsTuft in reply to B12life]

B2 coq10 and magnesium can be as effective a preventative as drugs for migraines. Unfortunately the first two can cause insomnia in some.