Your folate was rubbish too...how explicit does haematological language have to be with ‘below low reference limit...suggest deficiency...’ to be considered worth treating? Awful!
I think one of us may be misreading the folate - to me it looks like it is 10.4 ug/L with the limit for deficiency at less than 3ug/L. The writing is tiny and I might be mistaken but if that is the case then the folate figure is probably OK.
I've been away this week and missed your post saying how you were getting lots of reactions, sorry. I'm a bit concerned as a very few people do have allergic reactions to the jabs and there was a poor soul on here a few weeks ago with such a predicament.
You are taking all the right supporting supplements (nobody can question your determination to help yourself: you're brilliant!) and so I am wondering at the reactions that you reported a few days ago. They could be down to greater sensations from your nerves getting better but do, please, be aware that although almost everyone is fine with hydroxocobalamin, we are all different!
I'm pleased you are still posting and hope this is a positive sign!
In reply to today's post, if you weren't given treatment on those results I think you have a VERY strong case for a negligence claim against the Dr. Please keep a log of everything you were and are doing and feeling as you should be able to claim compensation for your ill health caused by your lack of treatment.
If you could do this it would be great as a landmark case that could help countless others to get the treatment they need. Hopefully some compensation would help you too although nothing can give you back the life you have lost because of their not following their duty of care.
I find it helpful to score things out of 10 but confess I've had to change the scale a lot of times as I've improved - feeling 9/10 on today's scale would be like 120/10 on a scale when I first started my jabs - so it helps to write out what the points on the scale represent.
(Eg, with my balance, at one time 9/10 meant I didn't have to hold on to anything to be able to walk slowly across a room, now 9/10 means I can hold and operate my phone or look sideways at the view while riding my bike without hands on the handle bars! [Sorry needed to show off and disguise it as an inspirational post on how much improvement you can get with the right treatment! ☺️])
You say your diet has been "rubbish" since 2014. Is this because you have been feeling too bad to want to bother to eat well and possibly crave high energy foods which often are low in other nutrients (I'm not surprised if that is the case with B12 and iron levels that low!)?
Please let us know you are OK and hopefully improving... Or see a Dr about your symptoms. If you don't want to see your GP coz you'd need to say it is because you have started injections, it is the weekend now and so you can see an emergency Dr at a different clinic or A&E station. Please do get checked out if you are still getting bad problems!
Oh my goodness - I have just read through your previous posts.
The lack of treatment in 2014 has probably been responsible for so much! As you now know, B12d ruins your functioning and mental state. I don't know how you have managed to pick yourself up - wow, well done!
Thank goodness you are a fighter and determined not to let it beat you.
I'm sorry for my question re your diet - it was reading between your lines with regard to this that made me read your previous posts.
You are not alone!! There are a lot of people on here who have lost everything as a consequence of this horrible deficiency and most of us have come back and rebuilt our lives as better people.
Hi. It's not compensation I deserve. I want to feel healthy. But I need help to do that. Yes my diet was rubbish because of the way I felt.... Having just started duloxatine I feel total rubbish. Wonder if I will ever get healthy and feel any better.
I may be mistaken, but I believe you mentioned Hydroxycycobalin as your B12 shot. I had a bad reaction to that form of B12 and do OK with Cyanacobalamin. Pardon my spelling, I am very iron deficient, just had an iron infusion yesterday and am not feeling well.
I hope you are able to get the type of B12 that helps you. The folks on this site are knowledgeable and very helpful. I have used this site to advocate for myself, since doctors in the US are not educated in these areas.
My fight continues and I wish you well in yours! Sita
Have you tried the b12 mouth spray? You can get it on Amazon. I get the “Better You oral b12 spray”.
I was told to put 2 sprays in each side of my mouth & hold it for as long as possible without swallowing so it can absorb into your capillaries in your cheeks.
I cant change the past no matter how much I want too. Believe me even before I became ill I wanted to change things. But I guess the damage was done. Don't know if I will be allowed to get healthy again.
That's unbelievable, that a doctor would not warn you with a reading like that. My reading on B12 was 211 and I had nerve damage in my legs and after 2 years of shots I'm still recovering. I can only walk a block or so before my legs start aching.
I can get into a red hot bath and not feel it. No feelings in my arms other then the pins n needles. And burning pains. Dr's. Make mistakes. We are all human.
So sorry you have been missed like this & therefore suffered as you have. It’s absolutely shocking & genuinely brought tears to my eyes. As others have said, there is hope that with the correct treatment in place, you will make a good recovery from how you feel now. Not sure if anyone else suggested it, but there is Tracey Witty from b12deficiency.org and Martin Hooper from Pernicious Anaemia Society who I’m sure would be interested in hearing from you & suggesting where to go from here.
Good luck & keep fighting! There is always support for you on here. ❤️
I must add to this story its personal but feel I need to elaborate. Those results were back in June 2014. I used to be a very kind hearted man who did anything for anyone.
In August 2014 I lost the plot. I became very agitated and paranoid. Psychotic. I was taken to a mental health hospital were I stayed until I left of my own accord. My then wife did not want me back so I spent 8 weeks on the streets over Xmas 2014 and new year. Since then I have lived in pain and shame for my illness. Its only these last few weeks have the puzzle come together. I believe my change in behaviour in Aug 2014 was due to my low b12 and iron. Since then I've had lots of scans. Cameras up and down nothing found. All the time symptoms have become unbearable. I've lost my wife, my family, job everything.
This should not happen to anyone else. I don't blame doctors I blame me. B12 deficiency is responsible for a lot of things. It seems it can be easily missed if people in health services don't want to look for it.
Sounds like you have had a crappy few years, fingers crossed the Doctors will accept it’s all down the B12. Sadly mine didn’t & told me repeatedly I had cancer, after every test, scan & possible camera job they gave up & told me it was all down to fibromyalgia!
I could barely get through the day, I couldn’t remember anything. I begged my new doc to check my records for something so simple that must of been missed & she found that 4 years ago my B12 & vitD were so low it’s amazing I’ve made it this far.
Good luck, I really hope you get the help you need.
I am so, so sorry you have been through so much suffering. I don't understand how you don't blame your doctor. You put your life, literally, into the hands of qualified people who are supposed to be on the look out for test results, especially if relevant to the reason you visited in the first place.
I am shocked to know that that no one at the practice picked up on these results, making the events that followed, entirely, or in part, preventable. You cannot hold yourself responsible for the situation as you were not aware of the test results.
Please be kinder to yourself, you didn't deserve any of life altering effects of B12 & Ferritin deficiencies. Sending warm wishes to you.
You can pull this back, I had the same problem but with a good diet. Ok I don’t eat red meat but I eat plenty of fish, eggs & diary. I am now on weekly b12 jabs, I had my loading diesel & felt great but sadly the effects just didn’t last long so I have now been moved to weekly.
Don’t be too hard on your self about your diet history, when you feel like shit all you want is shit - sweet, salty & high fat foods because we are desperate for energy.
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