I'm currently suffering from a range of symptoms that overlap with B12 deficiency including some very strong numbness across my whole body but particularly feet and legs followed by arms.
I have read a lot of the literature around this and there are clear suggestions to proceed straight to a trial of B12 injections where a patient displays clear symptoms, especially neurological ones, despite 'normal' serum B12 results.
I don't know my whole testing history but I know I was last tested for B12 in 2019 with a normal result. I don't know if I've ever been tested for the other markers recommended to be tested to get a diagnosis i.e. MMA, homocysteine and active B12 (holoTC). But I don't think I have because those tests have never been mentioned and I know they aren't commonly done on the NHS.
Because I've done a lot of reading and research on this topic (including reading around here, thank you all) I am aware that I might encounter some resistance when I approach my GP to ask for additional testing and/or a therapeutic trial of B12 injections.
I was wondering if anyone here was able to get a doctor to put them on a trial of B12 injections, even in the face of blood test results that didn't clearly show B12 deficiency?
I am feeling absolutely desperate.
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Fleecie
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Firstly , do get a print-out of your last B12 test which was pronounced “Normal “ by your GP . You need to know that result .You are legally entitled to a copy . My b12 reading was pronounced “ normal “ and I was sent on my way . My result was actually low and I did have P.A . I had to go to a private doctor to be tested for P.A. and the IFAB test was positive ( intrinsic Factor Antibody test) Lucky because about 50% of P.A.Npatients rest negative . Yes , it’s not easy to get a diagnosis , but symptoms should be treated , no matter what the result is . So first get that. print-out . Important .
yes that’s a decent level . But with your symptoms I think that it warrants another test . You last one was 2 years ago . It is possible to have b12 Deficiency/ Pernicious anaemia with a high B12 reading , but your GP may not know about this . It’s called “functional B12 deficiency “ .So look that up so that you are well informed .
Thanks for your reply. Yes I'm aware that the standard B12 test isn't fully accurate or reliable. I have done a lot of reading on the topic and this place was a useful source to point me towards that information.
At the time I was probably supplementing B12 so that may have given me a high result as well as the problem with the inaccuracy of the tests.
I am not saying for sure that I am B12 deficient though, obviously I can't say that with confidence. I have a lot of matching symptoms though and I've yet to get any other explanation or evidence-based diagnosis for all of them.
No, I didn't have success. Despite 25 years of symptoms, borderline levels, getting private tests, private injections and reporting benefits back to GP.
I gave up. I paid for my own. I appreciate not everyone has this option.
I would point out that others have had success. I think you need to be very persistent, and very good at withstanding ridicule and standing your ground. Many of us are either too sick or not very good at challenging authority.
Oh I've just known people put on them with chronic fatigue.(old term ME) ..not MS (link you sent)
Must be certain specialists or perhaps the person asked??
Thanks for guidelines on this I hadn't read them.
CFS not tested for b12 seems odd.
As many with undiagnosed b12 deficiency get this label cfs and fibromyalgia describing the group of symptoms( one of my daughters being one of them) Just to show how 'the wrong label' can't halt vital tests causing then permanent disability.
Definitely. I was also told CFS or maybe fibromyalgia. I dread to think how many are suffering. I want to write to them all and ask them if they’ve tried b12 injections. Same with all the long covid people.
I've been under investigation for many symptoms for years. I've seen neurologists multiple times. However I'm not sure that I've been properly checked for the possibility of B12 deficiency. I may well have only ever had my total serum B12 checked and as you all know that isn't a reliable marker.
No doctor ever mentioned to me that they were checking the other B12 deficiency markers like 'active' B12 (holoTC), MMA, homocysteine and IF antibodies and I certainly never heard about such results. So I feel its likely I have never been properly tested, but I can't be sure.
I'm going to look into my previous tests a bit more. But given the NHS' rep around B12 deficiency I am expecting to find that I've only ever had my total B12 measured, which is unreliable.
I remember reading a few of your posts around the forum here and you talking about your daughters situation. Another frustrating story. Is she getting proper treatment now?
Can I ask if she saw a neurologist? Presumably she did if she went for a brain scan. Did the neurologist do any of the B12 tests and was the possibility of B12 deficiency discussed?
I'm asking because I'm going to speak to my GP again soon and push for more B12 testing or a trial of B12 injections and i'm expecting him to raise the fact that i've seen a neurologist several times during the period where i've had these symptoms.
I think he might say ''well you saw a neurologist and they didn't find anything wrong with so I won't do anything further'' but the reality is that the neurologist didn't ever mention B12 deficiency or doing any testing for it so I just can't be sure that they (the neurologist) were thinking about that possibility at al.
So, yeah, did your daughter see a neurologist and did that neurologist either test for B12 markers and discuss the possibility of B12 deficiency? Would be really useful to know.
Hi Fleecie. I also have the same symptoms and a lot more, I have a low b12 it was 190 last test, but my g.p always say it's within guidelines!!! Believe me I have asked for help with no luck. I have even moved to a different. G.P .I have very low fertin 9 last test and I take pills everyday,and also a very bad stomach, all I get told over and over that's its all borderline. I have even had to stop work due to being so unwell. Still NO HELP. I have now been told by me G.P to go and see a neurologist. I am waiting to go see one Privately even private its a 14 week wait. I also feel like I am about to give up. I have tried my hardest to get the help I need for the past 2 yrs with this and I am still banging my head against a brick wall. Good luck .
Above link includes statement "In presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
I take this to mean ....if you have symptoms of B12 deficiency, you should be treated to prevent neuro damage.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
Thanks for your post. Fortunately i've done a lot of reading on here (and elsewhere) and i've come across your useful posts like this many times so I'm familiar with all these sources. Thanks again though.
I'm from the US not Great Britain but I thought I'd share anyway. My friend asked her GP to test for B12 deficiency and her doctor agreed and then said "Why don't we just give you a shot of B12 and see how you feel?" What a great doctor. She felt less tired almost immediately. Her test came back low so she's now on monthly shots.
Hi. I managed to get a private appointment to an endocrinologist. He suggested to the GP it was worthwhile considering a loading dose despite negative test for IF and "normal" b12 levels. It worked! Then I had to go back and he suggested the GP consider monthly injections and work from there. With the "back up" of the consultant the GP was more confident in prescribing. Unlike the gastro consultant who said "CFS , quit your job, running, life....."
I had yo get a neurologist to write to my Gp.Firstly ignored then my Gp against opposition from peers sanctioned sc and continue with 2 weekly prescription. Off licience
To still go for IM monthly thars now 6 weekly ad no nurses snd going by ladt one mat reduce further.
Hey Mama, can I just a specific question? I've got a friend who is also suffering from B12 deficiency symptoms, hes going to just try a B12 injection immediately.
Did you start to feel better after your *first* shot? How long until you felt a change after that first shot? Is it common for people to feel a positive change after the first shot?
Sorry, I guess that's 3 questions! But I'm not very knowledgeable on this point. But I would like to be able to tell my friend if he could expect to possibly (if he is truly deficient) see some improvement soon after the first shot, or if he is likely to need multiple shots to feel any difference.
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