Update ,finally after being up and down for over a year ,gota FACE TO FACE appointment with doc.Over last few weeks legs getting progressively worse ,sometimes can barely walk,today been a bad day.30 weeks without b12 jab and only taking sublingual should he have given me loading doses when I restarted the jabs.
I imagine many people over the past year feel like I do ,and really have had to build myself up to phone doc over symptoms .Spoke to him 3 times in last 6 months and on the last one two weeks ago ,he was going to dismiss me again,but had written everything down this time and I said to him ,SOME THING IS GOIN ON HERE you need to find out what that is .That’s when I got a face to face
See what happens on Tuesday
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may61
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I hope your injections get renstated as quickly as possible. .I've had my mums gp re refer her into district nursing to get her overdue b12 I jectiin fine thars sitting in her house. Not sure at what stagebirs at as not been good myself Push fir your injections
The idea of loading doses is to raise B12 levels quickly after they have become dangerously low.If your neurological symptoms have become much worse whilst on tablets then it is certainly worth considering and pushing for
Hello. I am just wondering if anyone can give me some advice please. I have had very little info from my GP on what the B12 levels would be after my initial loading doses. I started on 167 and had a blood test 2 weeks after finishing loading and levels show at 1227. Is this what it should be.
You’d be best to start a new post as your question is on someone else’s post.
Can you also please include ranges?
Your initial level looks low. The U.K. guidelines say that testing is not needed after loading doses but that said the dramatic increase in your level looks normal to me.
Have a look at the Pernicious Anaemia Society website which will give you latest advice about B12 deficiency treatment during covid.
If you have neurological symptoms, they should be treated by every other day injections initially, until no more improvement can be gained by this frequency - then injections every 2 months to maintain levels.
It would be perfectly reasonable to request reloading injections after all this time, but as you have deteriorated neurologically, I would hope that the medical guidelines for those with neurological symptoms would now be followed. Being unable to walk is not an acceptable condition.
Have you seen a neurologist ? Requesting an appointment referral should not delay reinstatement of your B12 injections.
Medical guidelines followed by GPs:
NICE (National Institute for Health and Care Excellence) guidelines (cks.nice.org.uk),
BCSH (British Committee for Standards in Haematology) guidelines
BNF (British National Formulary)
Try onlinelibrary.wiley.com : Guidelines for the diagnosis and treatment of cobalamin and folate disorders
Good for you. Good luck. That's where I feel it too..in my legs. They go numb and at the same time have all sorts of weird awful feelings in them plus it gets harder and harder to manage them. I am going through that now same as you. I was using sublingual for years which worked but doesn't work now and so far nobody will reinstate injections for me because my B12 level is very high due to the sublingual I take but it's not doing what it should. I have a question. What was the dose of the sublingual you took and how long did you let it soak in? I took 5000mcgs daily and gave it 20 minutes to soak in. It worked very well for about 10 years. I don't know why it stopped working. But I have observed on occasion that a certain brand won't work. That happened once when I was being prescribed daily injections. They sent me another brand and it didn't work. I had a heck of a time convincing them of this but finally they relented and went back to sending me the earlier brand and I was fine. So it's something to consider. If its not working maybe try another brand. I keep thinking that if I just find the right brand of sublinqual I'll be ok but the symptoms are gaining faster on me than I have time to go about testing different brands. I am going to try SI. But I mention the 5000mcgs sublingual daily and the 20 minutes because perhaps you weren't taking enough or often enough or letting it soak long enough. Maybe
I was taking 2000 and it was working .But hope you taking folic acid as well.I agree with you it very much getting the brand that suits you .Unfortunately the one I have been using is now not available so looking for something else.Good look.
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