Excuse the length of this post but I think you will see why I'm writing this.
I know that I went to the GP first in January 2015 - but didn't keep that diary. I'm sure that I first went with back/hip pain, exhaustion and diarrhoea.
I do have the 2016 one, so I know that I was, by January 2016, having physio for what was assumed from a CT scan to be hip and lower back pain caused by possible bursitis and muscle weakness (hip) and deterioration of discs and vertebrae in lumbar region and sclerotic sacro-iliac joint (back). An MRI scan in February added boney growths (arthritis) to back problems. Nothing unusual in a 57 year old apparently and no trapped nerve thankfully.
This wasn't all, though. I still had daily diarrhoea, could barely stand up straight and so was having blood tests, stool sample analysis and a gastroenterologist appointment was booked.
2 days later, I got home from work to phone messages from the GP: ring the surgery, vitamin B12 deficiency found and 6 injections needed. Three days later, I had my first injection. Up until my 5th injection, I thought that would be that, although I felt no better. No, I was told by the nurse, one more loading injection and then I'd need an injection every 3 months. For life.
I knew nothing about B12 never mind deficiency. The GP told me that nothing was found in the stool samples, bloods only showed mild B12 deficiency, and slight iron deficiency. Strangely, my sore mouth, which had cleared up, was already returning ... I found out, much later, that this was angular cheilitis. I'd had this by and large for over a decade, and hadn't imagined this might be a symptom.
So, initially, as far as I was concerned: exhaustion, left hip/lower back pain, daily diarrhoea.
Later, this all got a whole lot worse, despite frequent injections, more symptoms appeared and that continued for many years.
What bothers me is that the GP was relieved that they had caught it early: after all, I was only 1 ng/L below range - lucky, lucky lucky me !
What currently bothers me far more is the NICE guidelines draft document list of symptoms: they are, it appears to me, mainly symptoms that you might expect at a far later stage, including spinal cord disease, impaired balance and falls, impaired gait, dementia, psychosis, visual field loss..... how much more difficult would it be to come back from that state ?
Yes, "unexplained fatigue" is on the list, but that is, as Martyn Hooper has commented, on a lot of lists. It is the last thing on this list.
The first on this list is "abnormal findings on a blood count such as anaemia or macrocytosis": now, I thought we'd be about done with this one by now:
In a study of 70 PA patients, only 45 had very low cobalamin levels (less than 100 pg/ml), anaemia was absent in 13, macrocytosis absent in 23.
In a study of 141 patients with neuro-psychiatric abnormalities due to cobalamin deficiency, 40 had no anaemia or macrocytosis.
The absence of raised MCV cannot be used to exclude B12 testing since neurological impairment occurs with a normal MCV in 25% of cases.
Saying that cobalamin deficiency cannot be diagnosed without megaloblastic changes is like requiring jaundice to give a liver disease diagnosis.
[None of the above are my thoughts - these are taken from research quotes in Martyn Hooper's book.]
The sighs (air-hunger) , vertical nail-splits and bleeding, mood swings, desire for solitude, tinnitus, hair loss, burning feet, arrhythmia, muscle weakness - these are not mentioned at all in symptoms lists. There seems little awareness of these earlier signals, however trivial they might seem to GPs (or us, for that matter). Early detection, and as important, prompt and adequate treatment - that could certainly save the NHS money, perhaps save us our careers.
Did anyone ever look at your nails ?
So what made you first go to the GP, what symptoms did you first notice, what did you later find was also a symptom, what other symptoms developed later ? What would you like your GP to have known about ?
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Cherylclaire
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The people here got me through the worst. I was lucky - my GP knew about functional B12 deficiency, knew about MMA testing and how to get it. Not many do it seems.
Best of all, she got some highly reluctant nurses to give me 2 injections a week for six months. When I started self injecting EOD, she continued to be supportive and monitored folate, ferritin, vitamin D, thyroid, etc - but left out B12 . Pointless. Still got me referrals etc too.
I didn't tell her till the day after I did the first injection, just in case she tried to talk me out of it. Not at all. Instead she told me to ask one of the nurses to teach me - that was really never going to happen though!
Cognitive decline. Went asking to be tested for early dementia. After answering the inevitable questions; sent on my way, despite my protests that my difficulties were sporadic at that time, and he'd caught me on a good day.....
...which you'd think was an indicator, wouldn't you ?
The fact that symptom came and went.
You can see that there is a problem here, with us all being so different. I would be happier if the list of symptoms reflected that, even. How can a GP work from such a list and catch this promptly ?
That was my first symptom. It took numerous visits and a few more years, as I became I'll mentally and physically before accidentally finding I had macrocytic anemia and stupidly low B12. Then just the stupid every other day jabs for 2 weeks and 3 monthly totally useless jab. In the meantime I lost my career, the charity I'd started and worked so hard for, my ability to walk properly, couldn't drive as I forgot where I was going or which side of the road to use, or even string a sentence together, writing was impossible and reading a waste of time because I couldn't remember the previous sentence. No one put it all together until a chance blood test. Then I found this group.
Memory and concentration were huge problems for me and still can be, and this is mainly what prevents me from working now. I can't drive still, but have now started reading a bit (less dangerous if I lose concentration !)
Well, judging by this, we've both come a long way.
Yes, I think my GP was also exasperated with me not even trying antidepressants. Only because I was certain that this was not the problem at all, despite feeling that I was disappearing. A much wider perspective was needed.
Later, after the third refusal, we started to get somewhere. She proved to be invaluable.
I don't blame people for what they aren't taught. This is about teachers not recognising the importance of telling them. A question of priorities, especially where there is much to get through.
When I was writing courses, this was the simple first step:
"Must know...", "should know...", "could know".... : three colours of post-its, each topic given a colour and stuck on the appropriate board. Only "must know"s were subjects considered essential to the course and so ring-fenced.
We probably started off as a "could know" .... and ended up in a ball on the floor !
I think some education about early B12 deficiency symptoms for GPs essential for us. Yes, vague, but together, they should add up to a suspicion at least.
As you say, if automatic part of FBC*, or even 50+ testing, would pickup many more early on. Look at what you have been through. Why, when you have previously been an infrequent primary care patient (as I was), this is not noted by GPs and taken more seriously ?
* yes, even if that picks up sky-high B12 in self-injectors. Another lesson learned !!
This is a really great point! I had all sorts of symptoms that are now painfully obvious.
Sorry in advance for the long list.
I had many vague symptoms going back to teenage years but can't be sure what was b12d & what was other autoimmune issues. I had iron deficiency nearing anemia but normal mcv.
My nails were *always* bad - cupped with ridges & white spots not from zinc deficiency thyroid etc and i always picked my cuticles... until about 2 years into SI.
I developed sudden all-over burning and numbness in my arms in late 2016 & started SI. Never had any PA type anemia. Prior to that, my various doctors were all aware of the following:
Starting 2005
High CRP
Fatigue
Unable to recover from exercise & travel
Irritability
Start of insomnia
~2008-2009
Exhausted to the bone.
Fibromyalgia type pain / sensitive spots not completely resolved with thyroid meds nor later hydrocortisone.
Choking on food, drinks, saliva, air. Waking up choking at night. Got aspiration pneumonia. No one thought to ask 'why'.
Unable to recognize colleagues from their faces, let alone remember their names.
Burning feet.
B12 not measured.
~ 2010-2012 , all of the above, plus
Bugs crawling sensation in hair, at night. Went to both GP & hairdresser asking them to check me for lice.
Visual snow
Vision 'flickering' like an old movie
Fine tremor in hand
Feeling 'buzzy'. Not a sound, but something like internal trembling but at a higher frequency. Or like light electrical current going through brain.
Dropping cups, plates, random stuff... started using plastic drinking cups.
Slow gut motility, reflux, constipation, gastritis on endoscopy (i was on a good dose of thyroid meds already - GI doc said to exercise 2 hours per day the a**h*le)
Very rarely, mild tinnitus
Getting every cold/flu/virus in circulation & taking weeks to recover
B12 measured only in 2012 = ~320 ng/dl
I should have been investigated already by this point!!! MMA, homocysteine, UBBC, HoloTC. If i only knew then what i knew now. These are all classic symptoms. I had a new GP, a holistic doc, an endocrinologist, and a gastroenterologist....
. . .
2013 - 2015 , more new things . This is when things really started to get bad.
Shortness of breath
Unable to 'tolerate' thyroid meds. Diarrhea alternating with constipation, shaking, tingling
Unable to reduce hydrocortisone after stress dosing for illness. Continued to increase higher and higher & only able to reduce after starting injections
Severe mood swings. Constantly irritable. Unable to tolerate even a tiny bit of stress. Serious anxiety. Social anxiety. Crying. Rage. Other mental health issues ...
Body parts falling asleep more & more quickly, eg after 1 minute when leaning on elbow to read phone in bed, crossing legs, etc
SIBO discovered & treated. Gut motility still slow, reflux.
Gastritis on endoscopy. Got a PPI which made things SO much worse - more reflux, even slower digestion. New Gastro was very confused , didn't believe me.
B12 levels high due to 1000 mcg sublingual tablets.
2015 - 2016
On & off burning in arms , tingling in fingers
Swaying in shower & going up stairs
Unable to recover from activities. Have to plan week/month out so can make all necessary appointments without crashing. Housebound mostly.
Going from doctor to doctor with multiple pages of symptoms begging them to find the organic / physical cause. Number of times i got 'offered' prozac, xanax, and other psych meds..
2016
Onset of blind spot and large yellow scotoma in vision
Very mild tinnitus
Difficult to drive, no attention span, unable to focus. Cognitive deficits. Making constant mistakes at work
2 months before onset of sudden numbness/burning, MCV 1 point over range for the first time
Lyme was suggested, went to a lyme doc (negative)
Lady on an Addison's forum suggested PA / functional b12D
B12 levels high due to supplements. GP refused further tests/referral. Said numbness was due to swelling. Did private testing. All normal.
Joined this forum, which was the single best thing i did. Met all you wonderful people who told me i wasn't crazy. Started SI on my own.
The most unbelieveable part of your condensed story, for me, is that you were able to remain at work still in 2016 in spite of all your problems ! Well done.
The problems though ? Sadly, all too familiar. As is the lack of response you got.
A wide variety of symptoms, that constantly change and alter in severity, in frequency - of course diagnosis is not easy, especially given there is no definitive test.
But surely at least some of these are bound to be so rarely anything else, particularly in combination, that the GP's suspicion is raised ?
Thank you But really the only reason I made it to 2016 was lots of sick leave and a very flexible job at the university starting 2010 . I still remember, around December 2016, trying to type out a paper with my 6 good fingers, and finding mistake after mistake during the million proof-reads i had to do, including tons of math errors. Not too difficult to mess up since i had to count on my fingers to add 2+3 🤦♀️😂
Anyway yes it's amazing no one caught it. Myself included, and i was steeped deep in thyroid, nutrition, etc.
I think the problem is an over-reliance on (screening) blood tests and failing to consider how various symptoms could be connected. Lack of root cause analysis. It's all quick quick quick. Many times they think it's "psychological." One doc said the tingling was swelling, the other said due to anxiety🤷♀️ What can you do when even a clear symptom is dismissed. Look at the articles written by doctors with long covid - most weren't believed even by their peers until recently.
Had to refuse antidepressants three times before starting to be believed !
For me, absolute honesty is the only way to get there, with any of the many GPs and consultants along the way.
Everything smells like sewage ? tell them.
Can't check my change ? tell them.
Tripping over the back doorstep unless I walk like Ronald MacDonald, overlifting knees ? tell them.
Hair falling out ? take your hairbrush .
Take photos. Take your partner. Take the man you shouted at on the bus, the train, the library, Marks's, the chemist's. Take the man who lived to regret parking in your drive so he could pick up his kid from school. Take the whole of the surgery staff: the receptionist who watched you trying hard to fill your 6 injection appointments into your diary, the nurse you shouted at (while crying) for undertreating you.
Thankfully not that person now, but that won't get me my job back !
Yrs I missed a family funeral. Also weddings.It eas difficult getting to my daughters and that was 3 years into b12 treatment . Hiring a car as couldn't drive or use all public transport.
I also was argumentative in shops ,
A quick temper I'd never experienced before.
The receptionists saw me every other day fall literally put if a taxi and sheer wi power stagger into the surgery .
Once fslling over a chair leg with my wide gait legs
The walk - Martyn Hooper said once "like Herman Munster" - now surely that is a well-known indicator. The list says "impaired gait" - which needs to be more specific. Maybe not mention the Munsters, but you know what I mean. Something that a GP could recognise : "yes, I've seen/read about that before !"
Again, easier to spot if the appointment not a telephone or online version.
My husband said " Can't you walk through the room without bumping into something ? " So I purposely started walking up the very middle of the living room ( which had no obstacles ) and STILL tripped over furniture at the side !
Even while trying hard to walk straight, I couldn't sense that I was veering off to one side ...
A shame individual needs an unexplored factor. I find it staggering that some of us are able to go to the gym at all, for example, while others here remain housebound.
I also wonder why there are inexplicably good days, when we can be (or at least appear) like everyone else, and bad days where people are just staring at us in shock. Even people we told, explained how it is ... seeing is believing, I guess.
Which is why taking a photo to a consultation can be a good idea - but leave the album at home !
I'd never heard of the condition, although I found out later an aunt and uncle had it on my dad's side. My cardiologist was reviewing my medication and saw a lot of lanzaprozole. He advised me to cut down and wrote to my doctor and instructed blood tests. Came back with low B12. Only then did I look at the symptom list and realise I had many of them. But the GPs at my surgery are very split, spoken to four; one said I had PA, two that I didn't. The latest didn't comment on that, but said I shouldn't do self injections, as I may get B12 toxicity. I raised that I had read that this is not possible, which she seemed to accept, but then said that I was probably blaming the symptoms on PA because that was how I handled them, and it might be down to reactions to other medication. I saw a Dr at the Nuffield hospital who was a specialist, and he was sure I have PA. It is all very confusing.
Yes it is - for them, for us, for our familiies, friends, workmates. Nightmare.
Low B12 does not have to be PA. But easier to eliminate all other causes than wait to be megaloblastic or IFab positive !
I've had three IFab tests - all three negative. Parietal cell antibody test? negative. Homocysteine ? normal. And yet .... a family full of autoimmune problems: vitiligo, psoriasis, Grave's disease, etc.
I have had raised MMA for three years despite frequent B12 injections for B12 deficiency. Low and erratic ferritin and folate for two years despite supplementing. Osteoporosis of the spine. Unexplained patchy gastric metaplasia and flattened mucosal pattern at D1 and D2 (duodenum). Many symptoms - finally reducing in severity and frequency. Controlled by a B12 injection every fourth day. Oh yes, and a confirmed diagnosis of "functional B12 deficiency". Not PA.
But, because I have been a vegetarian for 40+ years, if anyone had asked me about my diet initially, I doubt I would have got a single B12 injection - or any of these tests.
For that reason, I am glad that NICE have made it clear that being a vegetarian does not make you immune to any other cause for B12 deficiency. Sadly.
first symptoms were nausea , stroke like symptoms down right side , severe lower back pain then over the next few weeks most of the symptoms that are on the PAS check list cut in and although some are now less severe I still have a whole lot of symptoms despite treatment😢
I think I had symptoms for years before but was told that they were other things , I only got my diagnosis while been investigated at the hospital for a stroke
I think your right, I have in the past given PAS posters to paramedics who said they would put them up in the staff room but how long they stay there is anyone's guess
I pushed my husband to consult his GP as he was loosing weight on a weekly basis . Maybe just 1/2 lb or 1lb.He had to insist on tests as he always stayed the same.
Periodic Pins and Needles and numbness were my first clear symptoms. Never had anaemia, possibly because of my very high folate intake. I suspected a B12 deficiency because I already knew some of the things to look out for. Seeing that GP was among the worst health decisions of my life as the advice they gave was to drop my B12 dosage further, with predictable results.
I'd never even heard of B12 - probably because I had no reason to learn. A busy life, a job that required me to be fit and active. Nothing to worry about, or so I thought.
No-one so far has mentioned megaloblastic blood test results, unsurprisingly. The GP would have to already be fairly sure that a patient had B12 deficiency to check. Most GPs seem to be out of their depth with this condition, and some seem blithely unaware of how difficult our lives can become.
Great post and really interesting, if depressing. I didn't really 'go' to GP as I've taken B12 orally for most of my adult life due to pharmacist Mum telling me odd symptoms might be that, (although GPs/consultants always said it was something else or nothing), because of her knowing about Dad's long family history of PA. I doubt they ever checked my serum B12 when I was younger and of course now it is high. All I know was that a mild folate issue was spotted when I was 17 and had a back problem, but not enough to get any advice or treatment. Fast forward to age 54 and methyltetrahydrofolate stops me bouncing off the walls, stops vertigo and lessens new numbness (which has now progressed from 20 years of arms and feet to knees and outsides of both calves). Rheum (Fibro) passes me to Neuro, small fibre diagnosis, I push to check reversible causes and end up with Metabolic/genetic, although I fear they will not find anything and will be less pleasant about it than yours seem to have been, as my self treatments have (presumably) made both homocysteine and MMA 'normal'. (If you don't mind me asking, did they just look at mutations or did they consider SNPs?) Meanwhile I continue oral self treatments which hold back the tide to a certain extent, but not for Dad who cannot remember to take them and cannot construct a discussion or the inclination to try yet again with blank GP. Best wishes
These are real case studies that are showing something that NICE are missing.
What this is showing so far is that we are all so different that a short list of the later or more severe symptoms is relatively useless. To us, to GPs. If what we collectively want primarily is more understanding for a quicker route to effective treatment, then education is key.
If the symptoms list in the NICE guidelines forms part of this education, it has to reflect what actually happens first.
If you don't know what to look for or listen to, you won't see it or hear it.
Re your query: The genetics report heading was "Diagnostic test for Methylmalonic acidemia (MMA)" and the test described as screening for pathogenic sequence variants in a panel of genes by next generation DNA sequencing. 23 gene tests were listed. Nothing detected, beyond being heterozygous MTHFR c.1073G>A, and MTRR c.1102G>A - both of uncertain significance and unrelated to symptoms. They had done many other tests by then and there was nothing revealed - methionine level 14 (range 10-530) being the only result that was not in a comfortably mid-range position.
The letter I received started like this:
"I am sorry that we were not able to identify the cause of your symptoms and have no treatment to offer. i am aware that you have seen multiple specialists over many years, and collectively we have failed to come to an answer for you."
It does always make a difference. They were aware that I had been self injecting EOD for about two years by then - and I believe that this was when I was tested for the 6th time and MMA was found finally to have dropped into mid-range, having been raised for three years and 5 previous tests.
Only the frequent B12 could have made that happen - what else ?
Thanks for that. I agree about the need for education, of ourselves, each other and doctors, and I appreciate that they aren't entirely to blame, but to see the same patterns of screaming symptoms over so many years for so many people when we have been trying to educate for years....and years.... I do find that hard to read. The unwillingness to be open-minded from GPs and nurses, even given scientific studies to support symptoms. But you are right, the list is too short and weighted towards later symptoms and of course not all of us get the same ones at all, never mind in the same order. I've lost count of how many genes are implicated in B12 and folate metabolism but many more than 23, although not specifically for high MMA of course. Shall be interested to see what they have actually tested when I get my results. Thanks again
Thanks for that list - symptoms creeping up on you is a common problem. Often means that you put off seeing the GP - keep thinking "next time I'm there, I'll mention it" or finding a cause: busy at work, sleeping badly etc.
Yes, head aches post exercise were first symptoms. Worst head aches then Migraines started a couple of years later by which time the other symptoms kicked in. Glossitis remains a sensitive measure for my b12 status, if I run too low glossitis develops. I know this is an oddity but it is an early and sensitive warning symptom for me.
Not an oddity to anyone here, I'm sure. Well-documented and even made it onto the NICE list.
My angular cheilitis having been treated, my Oral medicine consultant moved on to trying to help out with my constantly burning, coated, scalloped tongue. Not really painful burning. So far, no identified cause and so no cure or control. I decided to let him come to the conclusion that it is an unresolved symptom of B12 deficiency: so far, he hasn't . Neither have any of his students. Yet.
His attitude to my frequent self injection (and sky-high B12) has completely turned around, having discussed this with colleagues. He now believes that I should not try to reduce my injections and that substitution with tablets would be of no use to me. So it's no longer a distraction. Good. I continue to turn up to these appointments, not willing to stop trying to get answers if there are any.
It's not glossitis - typically a smooth very red tongue. Quite useful, sometimes, to have a visible painless reminder that you still need to keep regime up and not attempt to reduce. Quite a useful reminder to the medical profession as well should you need one, especially since it's made the list !
Interestingly, headaches/ migraines did not. A shame, because I think this can be an early warning sign. Perhaps difficult for a GP to attribute to B12 in isolation, but could help build a case alongside other symptoms. Anyway, still worth the cost of a blood test.
Hi, Yes, a swollen scalloped tongue is an early indicator of low b12 for me too. I missed giving myself my weekly injection last week and I'm sitting here with tongue covered in teeth marks .
Mine comes in 2 parts. Originally diagnosed in the '80s from blood tests showed macrocytosis after infection from insect bites. All went well until COVID arrived and injections were stopped. Now it's point blank refusal to accept original diagnosis. You're depressed, it's your diet, it's not in your notes, etc..
Went slowly but steadily downhill with falls, imbalance, memory loss, becoming emotional - that was new for me - falling asleep, bone pain, crawling skin sensation, etc.. If you look at a list of symptoms I have nearly all of them. Thanks to good folk here I found a German supplier and nervously started treating myself.
Changed my GP but still face problems with him wanting me to stop injecting myself because blood level is too high. He just doesn't get it that on injections it WILL be high.
Congratulations ! You are the first person who has answered with "macrocytosis" as the first sign. If the insect bites had not got infected, this would not have been discovered until you had become ill with B12 deficiency. So what was the original diagnosis (assuming PA ) ?
Insect gave me Campylobacter and I collapsed with septicaemia. Doctor said 'stomach bug, you'll be UK in a few days'. Well I wasn't, recalled doc., eventually got amoxil, then penicillin V, then penicillin forte, then co-amoxiclav, finally two courses of erythromycin which stopped the infection but not the symptoms. Blood tests then revealed B12 of 110. Over weeks further tests gave B12 of 114, then 112, etc.. Only then was Schilling test ordered. Result 'inconclusive'. So it was repeated but I never saw the result except technician told me it was PA and I'd need injections for life. Not being fond of injections - I don't remember but hospital notes say I was getting 1mg daily - so I sent doctor a letter asking if tablets would be OK. Reply came back that tablets wouldn't work, it had to be injections, and a hospital report I recently obtained lists it as 'pernicious anaemia'. That's as near as I've got to a proper diagnosis but got injections 3-monthly until I asked different doctor to make it 8 weeks. That's how it was until injections stopped, excuse was Covid. Then along comes my current battle.......
With very low B12 level, two Schilling tests and being told on the second result that you had PA, then injections were necessary. 1mg daily - they must have been worried. When B12 deficient, you are more prone to infection and less able to fight it off. All of the drugs you had to have for the infection will have reduced your B12 level too- hard to avoid. I can't imagine that the hospital report would have specified PA unless that second Schilling test had given them that result. It would have just read B12 deficiency, surely.
Covid changed an awful lot, but what it can't do is change the fact that PA does not have a cure. You seem to have the evidence there to prove PA was diagnosed.
Interesting. I used to get a terrible reaction from insect bites. Whenever I went on holiday once I got bitten the holiday was ruined for me. Any insect bite produced hard red painful patches the size of oranges with huge pus filled centers. The sand fleas in Bali were the worse. I couldn't wear anything that touched the bites. My GP never bothered to run tests just gave me antibiotics when I came back.
So was this an early indication of B12D? The intense reaction to insect bites doesn't happen now. Will I be able to go on holidays again?
I went to GP and because I had occasional foot numbness that came and went over a period of a year or so, which then became a burning foot/feet that rapidly got worse.
Later I developed intermittent diarrhoea, occasional discomfort in my lower abdomen, joint pain in one arm, nerve pain in the other hand.... symptoms became more widespread and constant, more distressing (my intimate areas), affecting my bladder, muscles... the list gets longer and it's affecting everything now. I lost 7 K, was nauseous and unable to eat solids for months.
I needed the GPs to understand that this was all connected and I instinctively knew that, yet they didn't listen. One GP called me a "diagnostic dilemma" because he can't look at the wider clinical picture. I need them to be educated on these things and to join up the dots.
Pins and needles or numbness (paraesthesia) IS on the list !
I noticed joint pain in one arm and nerve pain in the other hand - it is often said that nerve damage/ pain in B12 deficiency is symmetrical. Luckily that is not mentioned in NICE guidelines, but I suspect that some medical professionals will still expect to see that.
We all still have a lot to learn about ourselves and each other.
Things you've had for years easy to ignore as they have proved over time not to be fatal ! Vitiligo - my mum had that, spreading from a vaccination given when she was young. That is obviously an autoimmune reaction, one that no-one picked up on.
If it doesn't hurt ......
As far as "worse symptoms" goes, if you do ever need to talk, I'm sure there are people here that can help. Whether scientists or those that understand or have been there. Whenever/ if ever.
For me it was extreme fatigue, stabbing pains in my breasts, pins and needles in my legs/buttocks. At the time I associated some of my symptoms with hypothyroidism! Gp fortunately carried out blood results which revealed I had Pernicious Anaemia. Despite receiving a diagnosis in the first Lock Down 2020 I managed to convince Gp (thanks to this forum) to continue prescribing B12 injections eod until no further improvements (50+)
Now receive 8 weekly injection at surgery and self administer eod (Gp unaware).
Difficult to disentangle condition symptoms alone. Hypothyroid condition may have helped GP veer towards PA with you.
Did GP end the EOD injections because there were no further improvements ?
My GP gave me EOD injections (actually 2 a week, as nurses always too busy) for 6 months with some evident success, then 1 a month when I hit a down-turn. I'd been told that the maintenance dose would be 1 a month, but was not keen on maintaining a deterioration ! She said that I had reached the stage where secondary care was required.
When I started self injecting EOD, I told her the day after my first one. I was desperate to return to my job. She did not object. She is perceptive enough to know when something is working or not, and experienced enough to trust her own observations.
Post- Covid, this won't happen, will it ? Continuity, observation informing treatment frequency .... where are the current GPs going to learn this if they are only contactable by phone, with no patient choice ?
Hi, With me it was : Extreme fatigue, air hunger, vertigo, ataxia, numb feet / lower legs/fingers / across back, swollen crenelated tongue , palpitations.
However I had seen the doctor many times for several years before that with persistent, recurring iron deficiency anaemia ( no obvious cause )
Air hunger ALWAYS struck me as quite a useful telltale sign.
I have been watching for years now and never seen anyone else do what I do when queueing up exhausted at the checkout after a big all-aisles-included supermarket shop. Overlapping loud gasps for breath, loud enough to turn heads. Uncontrollable. When people stare, I usually shrug my shoulders and smile, makes them laugh. Once it starts, just have to wait for it to stop. Generally have to wind down the window on the way home so I can gulp some real air ! It used to happen in waiting-rooms, on the tube, anywhere where air is in short supply. It has certainly improved - but not gone entirely.
Air Hunger. Now that's something I hadn't associated with PA before. I have many symptoms and know about them all, but have had 'air hunger' for many, many years. I have never heard it described before but it's such an appropriate description. The slightest exertion would bring it on. My now ex ladyfriend used to call me 'puffing Billy', though gasping would better describe it.
It always happened on public transport, in consultants'waiting rooms ..... I remember my GP putting it down to anxiety, and I said "So why does it happen at my mum's house ?"
Better outdoors, better standing, better walking than getting a bus/train/car...
otherwise like a goldfish without a bowl !
Not as bad as I was, but altered lifestyle contributing to that in part.
An indication that can't be attributable to many conditions, you'd have thought.
I became ill when I was 15. My narcissistic mother didn't care, just screamed her head off at me for not going to school.
Eventually she took me to a GP who had me admitted to hospital as she thought I was anorexic.
After being in hospital 4 times, I was loosely diagnosed with MS.
Whatever it was went in to remission and aside from the odd bad day a few times a year I was fine until...I'm going to say 10 years ago, I can't remember exactly.
I have type 2 diabetes [allegedly, I think I have Cushing's Syndrome] and have to go for bloods every three months, so about 10 years ago I was telling the nurse I was feeling really ill, "my get up and go has gotten up and left", so she took extra vials of blood, and my B12 was low.
I was given the jabs one a week for 3 weeks, then one a month for 3 months, then told to go away as my levels are fine. Lather, rinse, repeat.
I remembered that my mother used to get B12 jabs every 6 or 8 weeks. I looked up B12, and eventually found my way to the Pernicious Anaemia Society and recognised all the symptoms as what was affecting me at the time, and were the same as the symptoms I had when I was 15. I also looked up MS and, well maybe I have both...?
I printed off the page on the PAS site that you could print off and show to your GP, and she literally scrunched it up and threw it on the floor...!
I've been arguing with them since, and getting nowhere and now the HSE has changed the policy of who gets B12 jabs, and I had to start self injecting.
An awful story without a conclusion. A GP scrunching up the potential clues to your wellbeing in front of you really not a good sign.
At least never getting to see a GP any more post-covid means no more of that happening !
Did your mother ever get a PA diagnosis ? That should help you to get at least an IFab test. The problem is that you really need to get this via someone who is aware that a negative test result cannot rule out PA, but a positive test, as Nackapan says, needs framing ! Someone who is willing to find out what is happening with you without relying on you to do all the work, or worse dismissing all your theories without offering any alternatives.
I have had three negative IFab tests. I believe that my GP was right and that I have functional B12 deficiency - although no genetic cause could be found. Self injecting every fourth day seems to work generally in keeping my symptoms controlled.
The doctors in that clinic are useless, my mother convinced them that there was nothing wrong with me, and for 30+ years that's the sort of 'treatment' I get from them...
My get up and go came back when I started self injecting, but a few weeks ago my regular diabetes bloods showed my white cell count was slightly elevated - I don't know what the cause was, but I stopped injecting to avoid skewing the follow up tests. Haven't heard back from the clinic, which is neither good nor bad news when it comes to them!
I was expected to continue getting my bloods taken every three months during lockdowns. To the point a GP refused to give me my prescription - twice (if anyone knows of a medical dispute lawyer in Ireland or the UK hit me up, I've got some stories for them!)
I've no idea why mother was getting B12 injections, I did point that out to the newest GP in the clinic a few years ago, but she didn't look into the who what where why and when of it all...
Why would they want to test your blood every three months if they don't believe you have anything wrong with you ?
No-one is checking me here. I haven't seen a GP or nurse for three years - except when I got to 65 and must have pinged their computer : got a pneumonia vaccine ! Didn't even know there was one.
They're checking my blood sugars because of my supposed diabetes, and so that my mother's GP can scream at me for being fat, lazy and eating to much junk food. She's been told TWICE that I can't possibly have diabetes as my diet is fine, and the second time they said I was anorexic.
Nowadays most people understand that diet/lifestyle has nothing to do with type 2 diabetes. My last tests showed my HBA1C had gone down,
I'm not supposed to be getting bloods done that often, but like I said my mother's GP is obsessed with her mantra of "you're fat, lazy and you eat too much junk food, get off your arse and exercise and lose some weight" as if that's the answer to my M.S., Cushing's and/or P.A.
She's instructed everyone else in the clinic to speak to her if I speak to them, then they get their minds poisoned against me and it starts all over again. I keep telling people "don't speak to Dr P, she's not and never has been my doctor" but they still go and speak to her.
I told the town gossip that I was going to sue the bleeping lot of them and for a couple of months I was able to speak without being interrupted and spoken down to, but when no lawsuit transpired, they went back to the tutting, rolling their eyes, sighing dramatically and telling me to "lose some weight"
I'm going to try seeing a private practice GP to see if they will listen to me
I went to my doctor because of extreme tiredness and it was discovered I was iron deficient. Iron supplementation seemed to help a little at first. I continued to become more and more tired then dizziness and numb toes. It was the numb toes that helped me diagnose myself. I requested a test of my B12 and we found it was down to 84. Such a simple test that could've saved me from years of barely getting by every day.
That's a good question. I kept telling my GP and my OBGYN I was so exhausted I could barely function. They would pat my hand and tell me I was working too hard and was too stressed. So dismissive I can hardly believe it now. I just accepted what they told me and tried to suck it up and keep trudging on. It was when my toes started to go numb and I began to experience memory lapses that I got really scared. I started Googling and discovered B12 deficiency.
I have to say I felt a surge of energy after my very first shot. It felt like adrenaline was shot into my veins or like a triple espresso on an empty stomach. It felt wonderful. Things have "stabilized" now that I am years into B12 shots. I normally give myself a shot every three weeks but for some reason I need more frequent shots during the summer months.
I once told off a consultant for telling me that "the sense of euphoria experienced by those self-injecting with B12 is well-known."
I did not feel anything at all. Not even the injection. I had to ask the nurses if they were finished. Until the introduction of a two injections a week frequency was administered and even then, it took three months.
23rd December 2016; I finally felt the injection without having to ask. Not that it hurt at all, i just felt it. Well, yes, a long way from euphoria, but at last, I had the hope that I was able to improve. A Christmas present from the NHS.
Yes, that's exactly what I was just trying to say to MoKayD above !
It really warrants a new word. Ours - not the T.A.T.T. of GPs vocabulary.
Key early symptoms seem to be missing from the NICE list, ones that might help us and GPs get there quicker. At one time in the not too distant past, I would have thought that any symptom that's highly visible without having to remove any clothes would be a good indicator. Even, in surgeries where the GP still comes to the waiting room to call (and observe) patients, perhaps gait-related issues.
However, since GPs have become less available in person, I now don't think that matters.
What does matter is that the early symptoms not being listed could lead to loss of opportunities to get help at a useful stage.
Hi, I know what you mean ! After a course of iron my GP asked me if I was any better. I said " Yes a little, but it doesn't feel like the whole story " ... xx
I collapsed and was taken to A&E. Really surreal, it was during Covid and I was the only patient. Neither A&E nor my GP diagnosed me. I was unconcious for over 30 minutes and they hadn't a clue why. After a lot of research I diagnosed myself. Looking back I had been suffering from serious B12D for over a year.
In retrospect, do you think you ever had a creeping deterioration that, at the time, went unnoticed even by you ?
I had angular cheilitis that completely went when B12 injections started. I hadn't known that this was related. My boss at work said "But I just thought you'd always had that !"
By then, I'd been working there for over fifteen years.
That's the problem isn't it. The insidious nature of B12D. Even when it was obvious I had something wrong with me and my partner was urging me to go to see my GP I just couldn't 'be bothered' to because of mild depression. Also my 'fuzzy' thinking made me totally illogical.
My partner keeps telling me I should have listened to him but I counter with the fact that my GP would never have diagnosed PA in a thousand years and would probably have just given me antidepressants.
I was lucky that my initial research indicated that I am also a celiac. The celiac forums recommend taking B12. As this stage I didn't have enough strength in my legs to stand up unaided and couldn't speak properly. After a few days of oral B12 I could walk. And, more importantly, I could think again. In fact I felt like a genius. I couldn't believe how much B12D had dumbed me down. At that point my research really took off. And helped me persuade my GP to give me a PA test.
Nobody is interested in my family history despite me telling them that when I was very young I had an aunt and a great-aunt both getting liver injections - yes, I'm old enough to remember the days before B12. Just to comment on hormonal changes, I found my hormone balance was fine until I got PA. Now it's wildly off. Unfortunately side effects of omeprazole are very similar to PA symptoms, or do they exacerbate them?
Yes, and I've been on it for at least 8 years for hiatus hernia. Malabsorption, that too, and pancreatic insufficiency, along with suspicion of Crohn's.
ALL of these require treatment by injection. I even have a statement 25 years ago from a former doctor stating exactly that.
There has always appreared to be a connection between vitamin D, folate, ferritin and B12 - yes, and thyroid. What that is with vitamin D I'm not exactly sure, but all of my levels were low. Thyroid was okay but struggling. Worth checking as two of my sisters have Grave's disease. Lot of autoimmune problems in my family.
The only reason that I get vitamin D on prescription now is because, having broken both arms (not luckily at the same time), I probably got computer-tagged for a Dexascan. Ticked some boxes. And now I've broken my ankle, I'll probably tick a few more !
A shame we can't just give our own stories, straight from this post, to NICE. We must be nearing 40 pages now !
I went to a GP first in 1963 with a pain in my side that is similar to a stitch in the side when running. Accompanied by difficulty breathing. This and other symptoms became acute over time although sporadic. The pain was likely caused by my neurological system November 2020 I was admitted to the hospital 3 weeks from death. B12 below what was tested for.
What would you like your GP to have known about ?
That although licensed/trained to treat B12 deficiency they are not competent and the best they can do is order the testing I request.
That the NICE guidelines are a great place to start if followed they are not going to limit my healing.
Hi Cheryl Claire... It all started almost 3 years ago with a stomach burn worse than ever before. PCP put me on over-the counter PPIs that didn't work. He then sent me to gastro for endoscopy where they diagnosed AAG.. and then she put me on PPI! for two weeks.. still didn't work and made it worse; then H2 Blockers and that didn't work. In the meantime had huge amount of testing.. gastrin way over normal level and parietal cells abnormal. B12 was above normal because had been on sublingual from a low test a couple years earlier but no huge symptoms at that time. A later Hematologist prescribed B12 shots but made me sick. Then back to now on B12 sublingual s. About 3000 mcg daily. My AAG has progressed to AMAG and now have endoscopies yearly. I eat lots of Greek yogurt and drink lime and lemon water during the day. That actually helps my stomach discomfort.
Yes, many people here have suggested trying lime juice just prior to each meal. Helps those with low stomach acid to digest food. Stomach acid can reduce as we age in any case - and strangely, gives similar symptoms to producing too much acid.
A few people here have said that drinking a teaspoon of bicarbonate of soda in water will let you know if your stomach lacks acid. If you do not burp within a few minutes, you have low acid. It helps to have your partner do it at the same time - as a test control.
I have tried this several times - never yet burped.
When my GP said that low acid is difficult to test for, I told her about this home test -and she laughed in disbelief. But if you aren't sure what acid can do, take a little of the bicarb powder on a teaspoon and squeeze a few drops of that lime juice onto it. A good way to test if your old tin of bicarbonate of soda is still useful !
PPIs can reduce B12.
Live Greek yoghurt (not necessarily Greek-style yoghurt) has plenty of good bacteria in it and cheaper than Actimel etc. Check the label though. I also drink Kombucha which also contains good bacteria: not sure if it does anything for me, but quite like the ginger and lemon flavour.
By the time I went to the surgery my symptoms were very obvious. Blood tests were done, within a day or two the surgery phoned to ask if someone was able to bring me to the surgery right away.
More blood tests done. Very quickly diagnosed with PA.
I found the PAS, looked at the symptom list, I had every symptom on the list.
I had never heard of B12 or pernicious anaemia either.
I felt like I was disappearing. Even I couldn't see me there any more. Gritting my teeth and getting through each day: why did I not realise I was ill earlier ? I spent way too long struggling. I remember, later on, the nurses told me that when they first saw me, I was grey. Yet my B12 was only 1 ng/L below range.
What do you think they saw at the surgery ? What symptoms were very obvious ?
So glad that you got a rapid PA diagnosis, Showgem .
First symptom was diarrhea, and some nausea and vomiting in the morning. It took a long time to get diagnosed because my doctor would not do any tests. She said she thought I just did not like teaching, but I did not teaching when I was vomiting (I never missed any classes because of it). That was the last straw with that horrible doctor. I tried a naturopath but it took me a couple of years to get a new family doctor. He sent me for a bowel x-ray. It did not look quite right so I had a colonoscopy that was totally normal. He kept trying. By then I was really tired and had tingly toes. He eventually tested for B12. As soon as I started sublingual supplements I bounced back like an energizer bunny. Those worked for many years. But at some point I had sore toes again and now get regular shots (they fixed my toes).
Sorry that you had a doctor who did not think that diarrhoea and vomiting not worth investigating further !
Good that you evetually found a determined GP. Wonder why you were initially treated with sublingual supplements, not injections ? Probably not from UK ?
There are studies reporting that supplementing with large doses of B12 (1000 times the daily dose per day) can be as effective as shots. I don't like shots. I did not want to have to go to the doctor regularly for the rest of my life. I was very happy that they worked for me for many years. Until they didn't. I still don't like shots. But my husband got training in how to inject it so at least I don't have to go to the doctor when I need one (3 weeks seems to be a good spacing). I live in Victoria, BC. Injectable B12 is available without a prescription here. It costs me about $1.30 Canadian per dose (0.77 GBP).
It's good that you could absorb what you needed from tablets for so long. Cheap over the counter treatment ? Something that in the UK campaigners have spent years trying to get.
A supportive husband who has trained to help you medicate ? Excellent also.
Three weeks being a good spacing - well that depends. For me, a three day injection-free gap is mainly about right. It is the differences between us all that cries out for the need for wide-ranging research.
And clearly a longer symptoms list. Why some people initially present with back/abdominal pain, some with headaches/migraine and some only find out the cause when having a stroke surely needs investigation.
I had suffered a mild TBI (traumatic brain injury) almost 3 years prior and I was experiencing increasing fatigue, unresolving dizziness, and unintentional weight loss, hardly being able to eat due to early satiety - also I had started developing aphasia about 1.5 years AFTER my mild TBI.
The scariest symptom was barely being able to eat.
I was also starting to experience paresthesia, bugs crawling on my legs and feet, at that time but I never even mentioned it to the doctor because I had no idea what it was - I thought I was going crazy and was reluctant to bring up another odd symptom that I couldn't understand.
I once told my GP that I walked straight out of a supermarket, believing it to smell of sewage! As much as it seemed ridiculous, as much as no-one else was reacting, every time I tried to re-enter the shop - there it was. Revolting. When my partner pointed out that only I could smell it, I disputed that, pointing to a woman exiting with a face-mask on !
Later, I conceded that my sense of smell was awry, and always checked "Is it me..." after that.
Quite what my GP made of this new development, she never said. I probably got a raised eyebrow - which in itself speaks volumes !
There were some confusing and worrying episodes at that time, but just like when you are dreaming, it feels real at the time, doesn't it ?
Not being able to eat must have been awful.
Interesting that a brain injury could have been a catalyst here (?) You are not the first person to mention a head injury seeming to bring this on, although some others might be attributable to falls due to dizziness, vertigo or balance issues.
So much more still to be discovered.
You can see why NICE symptoms list concerns me - look how many there actually are, just from the responses here !
Cherylclaire, I'm so glad you wrote this post asking us about our experiences.
It was terrifying not being able to eat. I felt like I was going to slowly waste away, with no one understanding that I was slowly dying due to something no one understood or believed. After my head injury I couldn't seem to recover, and I was unable to work. I was raked through the coals over my stubborn and inexplicable medical issues. It was very traumatic for me. Also, it's sad, but to a certain extent, for women being ultra thin is considered 'desirable' and even somewhat admired. I felt invisible in the worst way.
As for the head injury, I know people with B12 deficiency do experience vertigo and dizziness which can cause head injuries through falling. I was attacked and hit repeatedly in the head with a large object by someone with special needs who was dysregulated. I fully believe it kicked my autoimmune issues into high gear. I have heard this from other women (especially) with head injuries. I already had tests which pointed towards autoimmune disease before this, but my doctors didn't know what, and at that point my symptoms were much more subtle so they didn't test me.
How awful that you had such a traumatic experience, made worse by loss of employment, being unable to eat - and lack of informed medical professional support when you had most need of it.
I can remember the dread of disappearing, being unable to get back on my own. Finding help when desperate. This forum so vital.
People here have related how they felt having a sudden virus was at the root of their B12 deficiency - I can't remember hearing that head injury has. There is a certain sense in a body's protection system ratcheting up a few gears into "high alert" after either unexpected trauma, to my mind.
So much that needs exploring about autoimmune conditions like PA. Also B12 deficiency with other causes.
Meanwhile, on TV this morning, someone was extolling the virtues of the mushroom - full of B12 apparently !
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But really the only reason I made it to 2016 was lots of sick leave and a very flexible job at the university starting 2010 . 
this is what GP's think of us. 
Are you a, or do you know of a, GP Doctor that reads this forum?
When neurological symptoms and back& hip pain go away?
B12 neuro symptoms appear worse Advice before GP appointment please
Symptoms returning. What's next?
