The positive side of b12 injections!

I’ve been self injecting for just over 6 months now as I have confirmed pernicious anemia.The first few months I thought I was dying I had such horrible symtoms that seemed to have increased since my first loading doses which initially did give me some relief ,then the bad stuff started around injection 4 I’d say.All the painful sensations actually escalated around then and scared me to death and I worried so much that I’d done the wrong thing as I hadn’t been properly diagnosed at that time and was really only guessing out of sheer frustration because I was so neglected by my nhs doctors.Id had private blood tests done and just kept going with them eventually having an MMA test done which confirmed I was b12 deficient and managed to get gp to agree to loading doses and I continued to pursue private testing when I saw how quickly I’d responded to the first three loading doses, I felt alive again and no longer shuffled along like an old lady terrified of falling again because of the dizziness and vertigo due to b12 deficiency.

I learned and learned more stuff here on this forum than I thought my brain had the capacity to absorb due to a severe head injury and I continued to push on and find health professionals that were interested in helping me recover from all the bad effects b12 deficiency had caused in my mind and body and now after 6 long scary months I’m finally seeing more and more of the old me emerge.

For anyone who’s doubting or feeling like I did initially with worsening symtoms after loading doses,especially neurological I’d say stick with it,optimise your other vitamins and minerals while your on your b12 especially folate/folic acid a good b multi vitamin might be enough and vitd3/k2 spray or combined tab if you can ,especially now we are coming into the dreaded winter months,and check your potassium zinc and magnesium levels ,I can’t seem to absorb any of these from food alone.

Mostly what I want to say is plod away for at least 6 months,don’t expect overnight cures it won’t happen,most of us have suffered deficiencies for years so it’ll take time for your body/ mind to recover so be patient and most importantly stay positive.Forget about worrying over frequency of injections,I obsessed over that ,some of us just need more shots than others do as we may have suffered harsher deficiencies over a longer period of time and not known.

Good luck you will get there with time and patience and lots of great support from our lovely forum members.xx

[Nackapan]

How positive. You obviously so much better than you were

Great news

. You've done well in 6 months!!

Lovely you have some of your 'old self' back.

I even was pleased to recognised an old familiar pain in my knees the other day . (Common amongst Nursery nurses)

I've definitely learnt wd cant assume we are able to absorb all the lovely nutrients in good food.

Take care . Goid post for all.

[wedgewood]

Great news . And it will be so good for othfdrs who are struggling to read your post . 👍

[PhilAB]

Hi thrones, nice to hear your positive experience. I been injecting daily for 8 weeks and before that twice per week for 2 months. So I am 4 months in. Did you inject daily or EOD?

[Hidden in reply to PhilAB]

Hi PhilAB. I injected every other day after initial loadng doses then because I thought I was doing something wrong because of the severity of my symptoms I started farting around with the frequency,big mistake I quickly went downhill and my symptoms really ramped up when I went back to every second day so I then decided to stop messing around and listen to my body and when I feel well mentally keep doing the thing that’s making me feel well mentally and the physical improvements will come along at some stage and that’s exactly what’s happened.

It’s a silly affliction isn’t it because I think we have to learn to get our mental health in a good place and then because we are stronger we can then be logical about the other stuff that’s physically effecting our bodies in such a bad way and we can then research more and more to get the answers to a lot of it ie optimise your other vitamins and minerals and push for regular testing to monitor or get private blood tests done.This is what works for me and hopefully in time everyone will setttle on a good regime and get back some semblance of good health.Dont give up keep plodding and have faith in yourselves.xx

[Cherylclaire Forum Support]

I am really happy that you are getting there !

All you can do is keep hoping, keep aiming for as much of the old you as you can regain.

It is so hard when you are not (yet)seeing improvements or even getting worse, when you are facing opposition to your treatment frequency from experts, when you aren't sure whether the experts might have missed something, and when you really doubt the path you are on is the right one, but feel there is no alternative, when you are worried that no-one believes you........ yet still, giving up is not an option. It's way more scarey to go back, isn't it ?

If only we could convey that feeling to GPs, consultants, employers, friends, family and partners, B12 deficiency would be recognised for the devastating condition that it really is.

You have done really well and stayed strong and hopeful. May every step take you nearer to reinstatement of Old Self !

[Narwhal10]

Thank you Thrones,

Really pleasing to hear you recovered after 6 months despite feeling absolutely awful and the emotions that ensued. Your encouragement is greatly appreciated and I feel needed. Those of us recently diagnosed may have unrealistic expectations of the length of time of recovery. It’s also important that family members and close friends are aware that it is a very personal journey.

[Sleepybunny]

Thank you for sharing such an honest and ultimately positive story.

In UK, people often only receive 5 to 6 loading injections over 2 weeks even though those with neurological symptoms are supposed to have every other day loading doses for as long as symptoms continue to get better.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

BNF Hydroxcobalamin Children

bnfc.nice.org.uk/drug/hydro...

I often wonder about those people with neuro symptoms whose loading injections are stopped after only a couple of weeks and wonder how many of them would have had further improvement if loading injections had continued for weeks even months.

I was ill with typical symptoms including many neuro symptoms for many years without treatment. I had to resort to self treatment when all my efforts to get NHS treatment were refused.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

I am still improving several years after I started treatment.

[Hidden in reply to Sleepybunny]

Thank you Sleepybunny it really is a hard old slog with nhs gps isn’t it.

I really do dread doing the every other day injection but the consequences of not doing them are strong enough to encourage me to just get on with it.

I’m still having other investigations done via my professor and yes I have to pay for some stuff like a dexa scan recently because he prof was concerned about my calcium levels and bone health and gp swerved three requests to have it done privately ,my last scan showed oesteopenia so we wanted to see if any more deterioration in last two years.That cost me £125 not had results back yet.

I also gave gp copies Of a recent ultrasound Id had done privately which showed what we thought was possibly another very large stone in my left kidney but radiographer said she’s not convinced it’s stones and recommended a ct scan to check,gp again swerved it,I’m now arranging via my professor to have it done privately as obviously I’m worried it could be something more sinister that’s being missed because of sheer neglect by gp.God knows what that’ll cost.I get so weary of constant battles and me having to play guessing games on what to do next I’m not medically trained but I have to keep pushing myself to learn and know which tests need to be done.

I’m so pleased you are still improving and long may that last for you and thank you for taking the time to help and advise everyone the way you do it’s very much appreciated.xx

[Narwhal10 in reply to Sleepybunny]

Gosh Sleepybunny,

I’m really sorry to hear you weren’t listened to and weren’t treated by the NHS.

Thanks for all your valuable input and really hope your health continues.