Well Hidden 7 days of every day injecting now complete & the results are in 😁
Can't say I noticed a big difference to be honest.
Maybe a slight difference in mood & motivation.
Think I'll go back to every other day for a week & see if I get like a grumpy old man on the odd days I don't inject & I'll let you know 😁👍
Well done you you did well sticking with it at least now you know you’ve tried and it’s not had a major impact.It’s a good idea to go back to alternate days now and maybe even at some stage you can reduce that.
I’m convinced it was the alternate days Injecting that stopped me going into full blown Addisons,I took the advice of a gp friend and did this.
Well I’m going to learn by your suffering,I mean example 😂,and stick with my every other day regime for now.
Well done and thank you for update x
You're welcome 😁
Well thats interesting. You must be able to retain it for uo to 48 hours before it started to drop.
How did the symprove trial go?
I didn't really notice much difference to be honest. I stuck with it & it was the first thing I did every morning 20 minutes before anything to eat or drink.
It was very kind of you to send me that Nackapan. Thank you so much!
That's a shame it didnt do anything. But at least you know not to bother getting it.!! We have to try these things.
I'm still having live yoghurt and introduced benicol. With all my dietary efforts to increase ferritin levels and try and absorb more b12 ive managed to push my cholesterol level up. Cant win lol. So as I'm able to eat more solid stuff after tooth now I'm also amending my diet. I eats lots and always have. Weight fine . Energy awful still.
At least with recent trial you dont have to inject daily.
I'm on every 6th day at present. Hope you continue to do okay. T C
You do have to try these things don't you.
While I was taking it I read up a lot on certain things. I'm looking at gradually changing my diet to more alkaline foods. Thing is everything that's supposed to be good & healthy, I don't like 😁
I'll keep trying & thank you again. You too
Oh that's no good. You have to enjoy your food!!. Things I'm not too keen on but want to eat a bit I disguise . Sweet potatoes I add to other potatoes and onion and garlic. Add some indian spices and liquidize into a smooth soup to go with more plain live yoghurt ! Courgette season . Apart from ratatouille frozen. Grated and drained and mixed with feta and flour in fritters are yum. I'm not keen on loads of courgettes chard and spinach ect. Cabbage I puf cider vinegar on.Asive not been able to eat hard things for a while fbirder suggestion of mixed nuts and seeds ground a very good addition. Didnt know that existed had only used ground almonds before in breads. With this condition and nausea at times I still determined to eat as it helps me. Hard to keep up the momentum at times . My husband remarked even when I was bedbound at the start I ate everything he gave me. .
Alkaline diets I've not heard of.
My daughter as I've mentioned on other posts foung fodmap very useful 'tool' to work out how she could eat. From a child she loved food. It was very difficult to see her unable to eat without alot if pain ect.so much better now with the right food for her. A probiotic (cant remember name helps her) Hospital dieticians appeared quite limited in their knowledge. She gets good support from them and gastro but they are honest and do not know. An endoscopy at least ruled out any nasties. Hope your daughter is doing okay.
Let us know if you try this alkaline diet and I'd that helps anything
Thank you Nackapan, she is ok as I bought her high dose B12 tablets & seems to be doing better now. She works at Greggs & does lots of early shifts. I have to have her there by 5 a.m some mornings, so she is often tired. Her Dr wouldn't have it that her levels were border line. I'm seeing how she gets on & will get her to change her dr's if she's goes downhill again.
In my other posts I have said where I believe my B12 deficiency was caused because of my addiction to Prescribed Opioids. The Opioids also caused zero testosterone levels which I had hormone injections for, but the injections thickened my blood & brought me out in bad acne on my back & chest, so I stopped having them. This was all before PA diagnosis, but I still have the acne. So I paid to see a specialist who suggested more of an alkaline diet. After a test & looking at the food I eat, it's all very acid based. All mainly dairy, chicken, ham etc etc. He basically wanted to turn me vegan. But I think I'd starve if I did that 😁
I don't like courgettes, can't stand the taste of sweet potato, never eaten much veg etc, but I am starting to. I'm a foodies nightmare 😁
That's a good idea about mixing it in with other food.
My neighbour made a vegetarian ratatouille with courgettes in & he got me to try some after seeing my face all screwed up when he told me what was in it. To my horror, it was really nice!
So I'm going to start trying different things & recipies. I'll never turn vegan or veggie, but a balance & getting rabbit food to taste good can't be that difficult surely 😁
No disguising food you not keen on is quite easy. The other thing yo do is puree it and use it as a sauce I didnt used to like ratatouille because of the courgettes but do now. I tend to put strong hard cheeses on top or have small quantities .or have it with sausages!! I find soups cam have all sorts in .
I still cant eat lettuce and cucumber though as so hard to digest. I do prefer cooked food to 'rabbit' food. Steaming is good especially new potatoes green beans and carrots with cottage cheese.
Yes I used to work hideous hours in various jobs. Hospital, shoe shop, bakery. I've done all sorts . All physical.
Well you know all about physical .work with if damqhinv your back. You might need the acid with PA in your diet??
Skin is always slow to heal I find. Have you tried different topical creams and lotions prescribed or otherwise. ?swimming in chlorinated water helps strangely too.
My friend had low testosterone levels and has injections . I think if the dose is altered you shouldnt have that response. Sounds like hormonal acne when you have a hormonal surge when a teenager.
Anyway look up courgette fritters made with feta cheese. I know fried but you have to start somewhere 😀TC
My testosterone levels are back to normal now after the PA diagnosis & regular injections. Who would've thought such a tiny little vitamin could reek such havoc on us!!
I've tried several creams & medications from the dermatologist but none have worked. I'm trying a new one shortly after seeing him on Friday. This one they used to give people with leprasy, so if this doesn't work it may have to be a full skin transplant 😁
Funny you mentioned chlorine. We're having a hot tub in the next few weeks, a hydrotherapy one with jets everywhere to try to help my back & rejuvenate me, so may kill two birds with one stone!?
I'm laughing now 🤣as my neighbour brought round cake made with courgettes and carrot and orange. A step too far for me . Courgettes in a cake. No.My husband has to have low sugars as has type one diabetes. She shared banana cake before that. I cant lie so thank goodness he liked it all as such a good kind neighbour. He gives surplus veg offthe allotment to neighbours. Also ad I'm spreading g the awareness about b12 there was a bottle of b12 tablets the bought but didnt use. 10mcg each tablet. Well I cant get a 1000mcg in a tablet to do anything. Agsin my husband had them. His bqe was 178 and was tol borderline like tour daughter. He took thses low dose tablets . 3 months later had a blood test and his b12 wad 368!!!so I hope your daughter responds in the same way.
Courgettes in a cake!! Never heard of that before.
My favourite soup in vegetable, even though I don't like veg. I am strange!
Thanks again 👍
Hello Nackapan
I have just started Symprove for bad IBS and am so hopeful for improvements. May I ask how it helped you? Thanks! Sita
Oh I didnt actually try symprove. My problem was with 2 courses if amoxicillin for dentistry work. I tried one probiotic waiting for symprove tk arrive and it gave me IBS symptoms so decided t8 stick to natural yoghurt. Hen had fluconazole!
My daughter does well on pribiotics she takes a rather less expensive one daily and says it makes heg more comfortable. Less windy and bloated after food. She has had major digestive issues and changed heg diet completely
Thanks for responding! Best to you. Sita
It has also occurred to me on occasion that I might have been taking the injection frequency in the wrong direction (reducing instead of increasing) - but was injecting every other day and could not bear the thought of doing one every single day !
Am now okay on one every three days.
Thanks for doing the research for us: all pain and no gain.
Was maybe going to try doing it without saying, see if partner or anyone commented on my improved mood or better hair ! Think I'll stay grumpy - and cobwebby.
Yes ive reduced rather than increasing. Gp was getting me to try tablets to reduce from 2 weekly . I tried 3 weekly a few times and now I'm sure it set me back.
At the time great praise from the nurses to reduce?? Why??
surely the goal is to feel half human.
I'm sticking to every 6th day at present. Early days.
I know what you mean - there is pressure there. A really nice Oral Medicine consultant said to me that once the B12 level has gone beyond measurable level, how can they know if it is actually accumulating ?
I only know that I am doing okay now on one injection every three days, but that any of my symptoms can return without pattern or warning - but not as severely / frequently.
Think I've seen the back of the olfactory hallucinations, but do occasionally still check that what I'm smelling is real !
I thought it worth trying.
I know some have to do it daily & some even twice per day.
Oh, & I can guarantee to anyone who believes that it's addictive, be it a GP, Neurologist, or any other consultant, that it is very far from addictive, that is one thing I can 100% guarantee.
What does it take to get medical professionals to see how awful this B12 deficiency can be ?
How ordinary people who have been there are so afraid of a return/ relapse/ deterioration that they would willingly self-inject this vitamin if need be, just to ease the symptoms ?
That isn't addiction, it's just trying to get your life back on track.
Still wanting one day of no symptoms - and still believe that I'm nearer than ever.
But it's taken me years.
Yes, absolutely - worth trying, and thanks for the feedback, Ritchie.
Yes the first NHS neurologist I saw said I was addicted to b12 injections. It could cause cancer and to stop them as soon as possible. It was such an awful experience all round. The waiting area felt like a busy railway station with a high board like you have with train arrivals and times. I could not see it , waiting for my name to go to the next waiting area . The lights were awful.
The sheer lack of acknowledgement I wasnt coping with the environment from a neurologist. Once in the room quiet but my head wasnt!
I was so upset at that ,more than no dea what was wrong with me. He thought the fall was the total reason for symptoms.
I had the most frightening ? Migraine event that night . The pain horrendous. I can only assume lights and environment and short taxi ride. That was 3 months in.
Yes it has taken years for you and I agree it would be so lovely to have a symptom free day. I really hope that happens for you and everyone.
I'm sticking to the present regime although the last injection made me really ill for a few hours and a rotten extra symptomatic day . I could hardly move again. I started to doubt what I am doing. Like everyone this heat makes things worse also I'm 5 weeks post tooth extraction and although stitches out not healed completely yet.
I agree the medical profession as a whole seem no have no idea how bad this can be. My Gp has tried but seems bored now and impatient I'm still struggling. Also that I'm still not wanting to take antidepressants or duloxetine or diazepam. The latter she said I could take daily I thought she meant as a knock out emergency measure. ??That was in February when I last saw her. No mention I could get addicted. !!
I think I'm started to normalize things that are not normal for me like having to sit on the bed by 7pm not talk and not have any lights on family and friends forget and ring the landline i cannot pick up. They forget I cant go out for a social distance walk as still so restricted . They forget I cant read a newspaper or watch the news. I think that's why it gets so isolating when it goes on and on Even my mum says surely they know what's wrong with you by now!
I can appear 'normal ' for a 10 min chat with a neighbour . Then they suggest giving my bike a try pushing through a bit !!
They were shocked I wasnt outside clapping for the NHS. I was in bed. I tried it once but the noise was too much.I then got head pain and tinnitus and coukd sleep Some were ....really??
Some on here said
"Pretending to be normal"
I know everyone had their 'own norm' but that has stuck. Wouldnt it be nice to have a familiar feeling from the past to give us more hope for the future. Wishing you,and everyone a better day despite the crippling heat and humidity here in the UK.
Absolutely agree.
Addiction to Prescribed Opioid medication took 10 years of my life & my career away from me.
Now I need those injections to keep me going.
Very strange world we live in sadly.
Ive had such a bad two days trying to reduce again not Increase,why do I keep putting myself through this it’s so stupid just so I have a clear conscience with my gp and consultant?
I tried going 6 days there as I was hoping to reduce to weekly but god was I a complete witch to my poor hubby by day 5 I knew I was being ratty but couldn’t seem to control it and then my balance started going again I couldn’t walk straight was thumping one foot down as I took a step too,I was so weepy but couldn’t cry.
yesterday day 6 I had to Inject I just felt so low and back to being anxious again so I did inject early morning,by night I was starting to feel a bit brighter,apologised for the millionth time to my husband,he simply said your learning the hard way you need those alternate day injections and until you accept this and stop trying to comply with a flawed system your the only one that suffers and he’s right as always.
Today I feel better again but my feet are on fire again so no more of this for at least a year.I have my three monthly shot at gps tomorrow so I’ll have it then carry on doing my every other day,I’ve got more blood tests this week full blood count ferritin etc as consultant wants the cause of high ferritin checked,they want me on statins which I’ve refused and we need to check the urunaery calcium levels because of the stones so I think it’s best t keep my wits about me to deal with all this and stop piddling around with my frequency of shots.lesson learned “again”! Xx
Yrs my husband initially was with the GP . Then seeing me more working fro home now thinks she is useless. He initially thought like me why would you need so much b12?? Its disappointing so far but early days.
K personally never cooked with every other day as an inje tion98%of the time gives me quite difficult symptoms thdn k benefit on say day 2 or 3. . I'm recording still.
So if that's the right frequency for you stick with it. We win no prizes for going longer. My husband Injects 4x a day with insulin to stay well. But as he says it keeps him well. I m not well gk keep it yet. I've looked through again and I was every other day then 2x a week then once weekly then every 2 weeks. At one stage a 3 weekly one I'd made a note thats what I need? Then got ill again. It's the no rhyme of reason. I walked round the block and felt better j walked round the block and was so weak I struggled to get home .i walked round the block then put the washing out !All on the same regime.mezl times ect.
Hope your bloods come back okay. Any results on all the Addison tests yet?
Yes my sst test was good so it looks like the advice I got to inject b12 every other day did the trick and stopped me going into full blown Addisons there’s no other explanation for it. I still have some other tests I need done but so relieved adrenal failure isn’t on that list.
Feels like we are chasing our tail sometimes doesent it?What we can do one day bears no relation to what we can do the next day. I do worry about that because it’s so difficult to plan ahead,I book lunch somewhere then on the day I can’t go I cant explain why but it drains me just thinking about it,other days I’m full of hopes and plans and keen to enjoy life.
Take care Nackapan xx
Thrones, I think we’ve all tried spacing out our injections a bit longer. I certainly have and have finally learned not to do it again!
I started recording when some of my symptoms occurred on a daily chart from August 2016. I finally stopped at the end of last month after four years.
No patterns to be found there -and no-one looks at it besides me now anyway.
It took a couple of years to get folate and ferritin levels stabilised at a decent level and about 3 years for MMA to drop to within range. The B12 though is more difficult as every day is different, and changes can occur within an hour and without warning.
What I do know isn't much. I am getting better very slowly, but it has taken years of frequent injections. Less = worse. Nothing seems to really go away - it waits for you to succumb to pressure from GP/ consultant and reduce injections, it waits for you to get a bit confident about what you can get away with on a good day- it lies dormant within you somewhere. But it's never been as bad as it was when I first got done with the loading dose and had to wait for 3 months !
I am not going back there, not ever.
Just like Nackapan, I have been told that B12 is toxic, carcinogenic, and highly addictive but by a haematologist instead of a neurologist: I asked for the source of this information, some sort of research - three times. I think she and I both knew that it did not exist.
It is quite insulting, isn't it ? You wait months to see a consultant, take all your paperwork with you, get all nervous about what to say, what to ask for, what questions you want to put to them -only to find that it doesn't work out like that at all.
I have managed to reduce my injections from every other day to every third day, but it took over two years to get this far. If I miss a day, I'm like Thrones.
So difficult to explain that you're not being anti-social, selfish or lazy when you can't do something or go somewhere. So hard disappointing people and you just can't prepare.
I no longer need to sleep for 14 or 15 hours a night and I don't ever need a nap in the afternoon any more - and that's good for now. But there is more to be had.
We might never be as we were, some of us. but we need to be able to do what we can to recoup what we can - without being made to feel guilty.
Keep trying and best wishes.
What a lovely post Cheryl so well explained and so nicely put.I feel so sad that you have such a rotten time of it and as you say hopefully one day it’ll all just click for you and you’ll have more good days than bad days.
Your so right we do get lulled into that false sense of security thinking I feel quite positive at the moment so maybe I can try cut down the shots because none of us enjoy or want to do them but all we succeed in doing is firing up the bad symtoms again.
I’ve got my three monthly appointment this morning and my wise patient husband has warned me to keep my mouth shut about self Injecting or I’ll lose any support I have with the gp and he’s right,it’s been so hard getting a gp to follow a private consultants recommendations and this one has been happy to do this and I’m making progress so I’m doing nothing to screw that up.keep well and take care of yourself and keep doing what your doing.you are so lovely always there in the background with a kind word and support for us all so huge thank you from me xx
Do what you have to do to keep from getting worse, Thrones. Glad your husband is there for you. Keep going, and keep in touch.
Thanks xx
Totally agree.
I would advise anyone to keep a diary when starting loading doses & going forward.
I think I joined this forum the day I was diagnosed as I had never heard of PA before. I am so glad I did.
Loading doses did nothing.
Then 2 days after my first 3 monthly I felt a slight positive difference, but only for 2 days then straight downhill again. Same with second 3 monthly.
That's when I started looking at SI.
It's been a rollercoaster & lots of trying to space injections out since then, but realise now I cant.
But like you say Cherylclaire, I'm so glad I'm not going back to where I started.
I know I have it good compared to so many who really suffer.
It's just a shame it takes so long for us to get to a stage that we have to find on our own, due to lack of knowledge by those 'Professionals' who should be educated but are sadly lacking.
I was directed here from the thyroid forum and like you say id also never heard of p.a but had suffered from anemia since my school days and was starting to learn a bit more about b12 deficiency and I’m so grateful to the members there pointing me in this direction or I’d still have been getting passed piller to post by doctors and consultants.all those wasted years when they said I had mental illness after my babies and the disgusting immoral sessions of electric shock therapy and zombie drugs they made me have when I know now that it was quite simply b12 deficiency due to heamoraging after the births,if only I’d had this knowledge and support then id be a different person today.xx
Me too- the charts were really useful to me when asked questions like "When did you first notice this symptom ?" or "How long did your reloading injections last ?" when I would've struggled with "What day is it ?" or "Have you turned the bath off ?"
I spent most of those long-awaited consultant appointments yawning, crying, shouting, flipping through carefully-highlighted paperwork I couldn't read for a point I couldn't remember -and trying to decipher fairly ordinary words that weren't making sense as a sentence . Which surely must have told them something!
I had no sensation when injected, not for the first ten months - the reloading injections twice a week started working just before Christmas 2016: I finally felt something ! Not pain, just knew I'd actually been injected (was starting to doubt that to be honest)- progress !
Like you, I know that there are a lot of people here who have far worse symptoms, maybe who are at that point when they don't believe this is going to work, who feel lost and stuck. It can take a while to get there- another good reason to record symptoms, so that you can eventually see the back of them !
At the beginning of 2016, I didn't even know there was a B12 to be deficient in !
And look at you now on here taking time to private email us with support and kind words or taking the time to reply to our online queries,bless your heart xx
Would never have got this far without the help, guidance, support and above all kindness given to me from the people on here. Always someone here for you.
Today has been a good day. Tomorrow's looking promising.
Take it easy.
Treatment every other day
NHS injecting and self administration
