I had my B12 level checked 30/8. It was 189 which was within "normal" range. I tested at 534 2.5 years ago after 1 year of injections, starting at a baseline of 157 (which at the time was classed as deficient), I had 1 injection of B12 during that 2.5 year period so I had lost over 90% of the B12 I had got from injections. I questioned whether this meant I was absorbing any B12 from my diet and it was agreed I would take 150ug oral B12 a day, split into 3 doses for 6 weeks and then re-test. I had my B12 test 28/10 but the lab did not process it due to "national minimum re-testing interval project" guidelines and my GP now says I cannot re-test until 21/12. I've looked up that project and it clearly states under the gastro section that if no improvement on B12 you can re-test after 1-2 months. My B12 was tested in the first place because my neutrophils are very low and my rheumatologist is threatening to take me off my immune suppressing drugs. The week before the GP B12 test, I'd had B12 tested by the gastro.
I am seeing my gastro this evening and I will discuss this with him (I suspect any absorption problem is gastro related as I have terrible problems that have never been resolved or explained) but wondered if anyone has had a similar situation? I will, of course, ask the gastro if he can order the B12 re-test
I haven't heard of a "national minimum retesting interval project" in the UK, but like a lot of others, have avoided the GP practice as much as possible since they started the "can't get to see a doctor project" ! So have not seen a GP since Dec 2019 and have had three telephone appointments since then, all over a year ago now.
It seems that your GP has treated you for being B12 deficient (at 157 - can you give a unit of measurement as two are used ?) by giving you enough injections to push your level into range - and then stopped them completely. Is that correct ?
So - more questions :
Did you initially get treated according to medical guidelines - eg: a loading dose of six injections in three weeks, then a maintenance injection every 2-3 months ? (see NICE guidelines, BNF guidelines etc)
(If you had neurological symptoms, the treatment, as you will see, should be an injection every other day until no more improvement can be gained, then injections every 2 months.) This is to ensure nerve repair (where possible).
Why were you later given another single B12 injection ?
Why were you given tablets if you have a suspected absorption problem ?
To my knowledge, the only reason that retesting B12 after injections have started is not recommended by medical advisors, is that some doctors were mistakenly treating patients only until a retest showed a "within-range" result - as your own GP seems to have done !
You will have seen your gastroenterologist by now - what did he say about this ?
But most importantly - has anyone asked you how you feel ?
Some people can absorb their B12 in tablet form easily. Healthy vegans for example. Some people with a B12 deficiency problem can also absorb some B12 in tablet form- but not very much, so you need a lot of tablets, and this would warrant close monitoring to ensure whether or not you are in this group. Some people cannot control their symptoms at all with tablets, cannot get B12 from food - and so require B12 injections for life.
There is no test yet that will reliably give medical professionals a guarantee that tablets are the right answer for you. I would expect any trial to have your consent and be monitored - not going by numbers, going by results.
Results to me would mean that you have your symptoms under control, as far as you are able. I would start by listing your symptoms and filling in a chart daily. This alone may be difficult as it seems that you have more going on, which means there are other symptoms of other conditions to disentangle. It is possible there is an overlap, too.
Have you had an IFab test ? This isn't a pernicious anaemia (PA) test as such - it tests for intrinsic factor antibodies - which about 40-60% of those with PA will have.
An MMA test (gastroenterologist could organise this for you) would, if MMA raised, give a secondary indicator that you have B12 deficiency. Once you have had B12 injections, as per guidelines, this should rapidly return to normal level within range. There is a possibility that yours will prove to be above range. The MMA is in bloodstream, awaiting a link-up with B12, so if deficient / insufficient in B12 it can build up.
These are suggestions, but I don't know your story, your symptoms, additional conditions, or even what injection regime you were on. I don't think 189 ng/L is within range, whatever your local laboratory range might be - mine was treated at 196 as the local range for me was 197 ng/L.
Get folate, ferritin, vitamin D and thyroid checked too, if you haven't already. My folate and ferritin were low within range and very difficult to get back to stable healthy levels even with supplements. My vitamin D is now on prescription as I was found to have osteoporosis.
It took me a couple of years to sort out my ferritin and folate, about three years for my MMA to get back into range - and about the same length of time to get my osteoporosis demoted to osteopenia !
You might be lucky but I'd expect this to be a bit of a slow process.
Thank you for responding. To answer your questions:
Level on 30/8 was 189 pg/mL [range 145-914] Folate was 15.7 ng/mL.
Level on 12/12/2018 was 157 pg/mL [range 180-914] see how they've moved the goal posts there... Folate at the time was 14 ng/mL.
I had nightime pins and needles in ring and little fingers of both hands, exhausted etc. so was given the 3 week every other day injections then injections every 3 months. On 5/2/2020 B12 level was 534 pg/mL, folate 15 ng/mL so, yes, my GP then stopped the injections. I have had 2 IFAB tests, both negative.
I had a B12 jab 17/3/2021 as I had pins and needles again, generally exhausted, brain fog etc. and my husband pointed out that these were low B12 symptoms but I have ankylosing spondylitis and many of these symptoms could be that. I asked for B12 test but was told to just have a jab so did so.
After the 30/8 result it was me who questioned absorption as in 2.5 years I had lost 91.5% of the B12 that had been added from injections. We agreed to try the supplement as it is only me questioning the absorption (as I am within range according to test) and I felt if my level had not improved on oral supplements it would be more proof that I am not absorbing B12. I am not vergetarian or vegan but I do not eat dairy as I am lactose intolerant. Prior to realising I was lactose intolerant I did not have much dairy anyway as it always made me feel sick. (Why I never put 2 and 2 together I really can't say!)
Confusingly, my gastro reckoned my B12 was 299 on 23/8 but he did not give me the unit of measurement and when I asked for more information he just cut me off and said "People think blood tests are everything but they are not" (which it seems to me means we will interpret bloods however we want and not neccesarily in the way that will benefit the patient the most!) As far as he is concerned there is no problem with B12 so will not do further testing.
In my latest rheumatology bloods my ESR was 22 so GP wants me to re-test, even though this is a rheumatology blood and I have an inflammatory disease and rheumy has not flagged it! "But your neutrophils are fine!" he said (2.2) at which point I felt like pulling my hair out as I had already explained that the problem is that it goes back up to normal range but it isn't recovering as much each time and it will go back down again... And I wanted the B12 result to see if that had a bearing on the increased neutrophils... The goal is to not be taken off my immune suppressing meds as life will be very miserable without them.
So it is not a straightforward situation unfortunately. As I told my GP, I can tell you I have pins and needles in extremities, difficulty with words and balance, exhaustion etc, but I cannot tell you what is causing it - low B12? AS? Something else? I don't know. And neither do they it seems.
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Forgot to say, my Vit D was "fine" according to gastro (no numbers and no chance to get them, I was in the room with him for 3 minutes). I take 1000iu daily as I have latent TB and was told by the specialist I must always keep my Vit D level up. I was deficient about 6 years ago and was given prescription vit D, then told to maintain myself.
Thyroid has been checked many times (I have prominent eyes haha!)
Two of my sisters have Grave's disease (autoimmunte thyroid) - one had prominent eyes and failing eyesight at one point, very thin. She also has psoriasis and autoimmune gut problems (has to keep changing diet to fool digestive system (as everything attacked as "enemy") . Also, unsurprisingly, has to have immunosuppresants. My other sister has unpredictable weight changes, is very stiff and shakey, and often hyperactive. Difficult to stabilise.
Ankylosing Spondylitis -isn't that also an autoimmune condition ?
They rarely come alone, it seems.
Despite my family having Grave's, vitiligo, psoriasis etc, I have managed to get off comparatively lightly. My b12 deficiency was diagnosed as functional B12 deficiency (due to the continued raised MMA). It was never seen as pernicious anaemia, and I think I've now had 3 IFab tests. all negative. Now one of my cousins and one of my neices have also been told they have B12 deficiency, alongside other conditions. Often no reason given, as no definitive test for PA. A vast array of symptoms, most of which are not recognised by GPs - but some of which are serious.
One of the more positive aspects of visible symptoms: GPs can see whether you are doing well or not -often without having to remove so much as a cardigan ! Time-saving. Of course this becomes immaterial now that phonecalls are generally all that are offered.
When seeing consultants, even the most visible and reliable of symptoms seem to disappear for the duration of the appointment ! I always took a few recent photos with me, just in case. Yes, you walk a fine line between too few being seen as "rarely a problem" and too many being seen as "obsessive" - but better than being labelled as a timewasting liar.
If you have numbness, tingling, balance and cognitive issues and it was found to be due to B12 deficiency, you would need to be treated as a patient presenting with neurological symptoms - that is, according to medical advisory bodies, B12 injections every other day until no more improvements are possible - and only then one injection every 2 months. How to distinguish between which symptoms belong to ankylosing spondylitis and which B12 deficiency, I wouldn't know. But someone out there no doubt does. The trouble with nerve damage is that if not addressed, the problem can worsen.
Trialling B12 at a more useful frequency for a longer period ?
I was given 2 injections a week at my GP's request: everyone saw the improvements - friends, family, work colleagues, nurses - and my delighted GP ! For this reason, she kept me on this frequency for six months. Why change a winning formula ?
Because I still have periods of a better life with less smptoms, I believe that there are more improvements to be had. If I can only discover what it is that makes me deteriorate..... that is the hard part. I have now got years of charting daily symptoms in the hope that a pattern will emerge. It hasn't.
But it hasn't stopped me from thinking that this might well help others. If only to acknowledge, even on the bad days when you most need it, just how far you have come.
Hoping this will be true for you too one day soon. Keep asking the questions.
Yes, AS is autoimmune. It took 25 years to get a diagnosis during which time I was told it was all in my head and left to cope on my own... I have a range of issues and I believe there is at least one other condition going on, but I am finding it very difficult to get anywhere with health professionals. I have had severe gut problems since I was 18 but my gut has not functioned correctly since birth. In the end I paid to see a gastro privately and then he transferred me to his NHS list. He's very abrupt. He tested for bile acid malabsorption and H Pylori (both negative) and now he's told me to take 3 different types of probiotic (cost was over £200) and get some CBT and he'll see me in 3 months. This was pretty disappointing. I understand the gut-brain correlation but he says gut problems can be caused by an unhappy childhood for example and then glosses over the fact that my gut problems started at birth! Maybe I was unhappy in the womb? My dad has gut issues, my grandad had them, my daughter is developing them. I too have years of data about my stomach issues - no pattern has emerged there either. It doesn't seem to matter what I eat, how I eat, what time I eat...
I also have krukenberg spindles so have now been diagnosed with pigment dispersion syndrome (I'd never heard of it and if you haven't either it's when the pigment of your iris flakes off and collects in a spindle type formation across the pupil, which can lead to a build up of pressure in the eye and in worst cases, glaucoma). My eyes are very dry, my close up vision has markedly deteriorated in a matter of weeks recently (I am near sighted and wear glasses for driving and watching TV but my close up sight has always been excellent) which could be B12, could be the PDS for all I know! Could be age? Unlikely though with the myopia which typically cancels out the need for reading glasses and also it comes and goes...
I have walked into rheumatology appointments before looking horrendous and she's written to the GP that I look well! At one point the kids in my daughter's class were saying that I was a drug addict (I really did not look good!) I was incredibly underweight as a child and now, nearly 50, I'm still on the light side. The AS was somewhat masked as I am overly flexible in my hips, elbows, knees and ankles. The rheumy actually told me at first there couldn't be much wrong with me as I can put my hands flat on the floor, not just "touch my toes"! Thank goodness for MRI which showed AS and very active AS at that... She said she didn't know how I'd kept functioning - but you have no choice but to function do you? Sometimes doctors say the silliest things.
People did notice an improvement when I was on the B12 and they have started to say in the past six months that I am looking very tired. I also have burisitis in my hip, a rotator cuff problem and possibly arthritis in both shoulders. Orthopaedics refused to give me a steroid injection and I had to fight to get a physio referral. The physio has said he will get me the steroid injection if I do not improve with the exercises. Of course, the burisitis, rotator cuff (opposite sides!) plus the overnight stiffness that sets in with AS means I do not sleep well. I therefore have very little energy to fight for correct medical care. I can barely keep on top of housework.
No one else in my immediate family has any diagnosed autoimmune conditions except my nephew who is coeliac. I am gene positive for HLA-B27 so I've inherited it from one of my parents but neither of them has developed AS. My sister also has a number of problems, not diagnosed with anything but under rheumatology due to my diagnosis. My other sister has had a full hyserectomy and has a stoma due to endometriosis. We may be as bad in the health stakes as your family!
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