So after a wait of 2 & a half yrs I finally got my marker test, along with my regular thyroid, cholesterol & general tests. I’ve been told Ive lack of intrinsic factor and i’m to have 3monthly B12 injections for life. I previously had a course of 6 injections in February this year, and the same 2yrs back. I’m pre diabetic 0.42, hypothyroid & get whinged at about my 6.7 cholesterol, so tired but try to live more than 5k steps, and cannot loose weight even when on a plan with tracking
Does any one have any useful advice or recommendations at all please? I’m so over the brain fog, depression, hair loss, snd non existent sex drive, and that’s just tip of it
Thanks in advance
Written by
MrsSAcky
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Good morning Sjep13.Its good that you have your I.f results back that’s telling you that you have confirmed p.a now so aleast you’ll get regular injections of b12 but the frequency is not enough for most of us and we have to self inject every other day to get some kind of decent relief from symptoms because despite battling with gps they refuse to increase the frequency to keep us well and prevent symptoms like your experiencing.Best advice I can give you is to consider self injecting if your not up for a battle with gps.take care x
3 monthly injections work for some people, but not by any means everyone. The current guidelines, changed in 2014, state 2-3 months as a frequency, suggesting that they are well aware that 3 months doesn't help all.
If you have any neurological problems, the treatment should be every other day injections continued until no further improvement can be had (not to be confused with "until you deteriorate again") - and then every 2 months.
1 B12 injection every 3 months is not the only safe treatment available. If you were unlucky enough to have an inability to metabolise B12 at cell level, you would need 2 injections a week. Although this is a rare condition, the frequency is an established one.
NICE guidelines are about to be reviewed again - with the involvement of the Pernicious Anaemia Society. It might be a good idea to join for information and support - and to check what the medical profession guidelines are telling GPs currently.
You can get a lot better quality of life than you are currently experiencing. Have your folate, ferritin, vitamin D checked if you haven't already had these done. All three of mine were low/low within range (can get missed)- and osteoporosis of the spine was found, so vitamin D tablets on prescription.
You said you'd been told that you have lack of intrinsic factor. My strong advice would be to get a printout of this result and keep it safe. If you ever need official medical proof of your condition to prevent your B12 injections being stopped, this is it.
I get copies of all of my test results from GP automatically now, just to keep an eye on direction of travel for folate, ferritin results etc - everything except B12, which I can guarantee will remain high without having to check.
High cholesterol is a symptom of being under-medicated with hypothyroidism.
I'd suggest getting full thyroid testing. Are you on the thyroid board?
"’m to have 3monthly B12 injections for life. I previously had a course of 6 injections in February this year, and the same 2yrs back."
My understanding is that patients WITH neurological symptoms eg tingling, pins and needles, numbness etc should be on following pattern of treatment.....
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
The pattern for patients without neuro symptoms is usually
6 B12 loading injections over 2 weeks followed by an injection every 2 or 3 months.
I suggest you write a list of any neuro symptoms you have and pass it to GP.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
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