I think it might help others, particularly those new to this forum, to see what some of the more visible B12 deficiency symptoms can look like. Please feel free to add your own if you like ....
I'll start with a piecrust tongue: this is a fairly common symptom and you can clearly see the reason for that name.
Angular Cheilitis : when the corners of your mouth become sore, splitting and bleeding can follow. Sometimes, it isn't just the corners that are affected.
Hair loss: although this can also be caused by a folate/ferritin deficiency, it is a common problem for those with B12 deficiency. Premature greying is also mentioned - which can grow back in it's original colour apparently, once B12 replete.
Cherylclare
What a GREAT and BRAVE post. 🏆🏆
Brilliant illustration of visual symptoms which I am sure will help many realise what their symptoms could mean.
But as we always say with PA and B12D it has many faces and although I was severely deficient at 106 ng/l I looked “ok” not as bright and sparkly as usual but a bit like tarnished silver - great until you compared!
It will be interesting to see other visual symptoms
🤗🤗🤗🤗🤗
Thanks.
Yes, true, you can look okay-ish. Having visible symptoms used to have some benefit when face-to-face doctor's appointments were more of a thing.
106 ng/L ???
I was found to have B12 deficiency at 196 ng/L (local normal range started at 197 ng/L, I'm relieved to say) - maybe I'm a bit of a wimp, but at that level, I felt like I was dying !
Same here. 190. I felt like I was dying. Really I think we were.
Your posts are so inspiring!
I have read somewhere that B12 blood serum readings can consist of up to 80% of inactive B12 which cannot be utilised by our bodies . . I don’t know if this was from a scientific paper.
Does anyone knows of a link to information on this ?
To have a link to a science based paper with this information would be a useful tool for patients to have when they are told that their B12 levels are OK . ….
Can Technoid or Jade help with this?
They are among the whizzes with papers.
I too read that and cannot remember either. I will have a scout.
O'Leary F & Samman S (2010) Vitamin B12 in Health and Disease. Nutrients 2(3) 299–316.
5th paragraph of the whole thing. 3rd paragraph under 1. Vitamin B12 Function.
ncbi.nlm.nih.gov/pmc/articl...
It does help if I add the link too. Oops.
‘Serum vitamin B12 is bound to proteins known as transcobalamins (TC). The majority of the vitamin, approximately 80%, is transported on the inactive TCI (also called haptocorrin).’
The journal Nutrients would be accessed by student dieticians, dieticians, sports scientists and possibly, doctors who specialise in Inborn Errors of Metabolism. I was also signposted to examine.com
by a private dietician. I have only used it twice as I have my own style of learning.
This is a new find for me, I am very aware that research usually focuses on people who are over 65 which is extremely incorrect.
Imerslund-Gräsbeck syndrome (medical jargon) is an inherited condition which causes vitamin 12 deficiency in babies and children.
pubmed.ncbi.nlm.nih.gov/269...
I’m putting it here because I have so many windows open and my own brain sometimes cannot retrieve simple words like ‘blender’. I make a hand gesture and the noise. 🤷♀️
You are probably aware that difficulty retrieving words during discussions, even common, simple words that the person uses often, is a symptom of B12 deficiency, and is actually emphasized in one of the brief case studies included in "The Many Faces of Cobalamin Vitamin B12 Deficiency". Beginning around 2008 I started experiencing this symptom, often with words I had used just a minute or two ago. (I wasn't diagnosed until 2021; a neurologist recognized my symptoms and ordered related testing, and serum B12 was 74 (range was something like 196-900).
WiscGuy, that’s 11 years. 😱 No wonder you could not find words. I kinda like my brain fog, I laugh at it.
So you know growing up, my older, boisterous sister would actually talk for me. Telling my grandmother, ‘Narwhal wants a biscuit.’
I was very quiet, rather shy, polite, studious and loved sport. As a teenager, my parents asked where I was going. To me it was blatantly obvious, I had put on a coat, so the answer was, ‘Out.’
Then I found out what the word, ‘introvert’ meant and when I read the book, The Secret Lives of Introverts, another lightbulb moment happened. I think very deeply and vividly unless I am superbly B12 deficient which happened. For example, if somebody asks me a question such as, What did you wear to a fancy dress party in a particular year ? I still get a little tongue tied. The way I think, when well, I, like many introverts, we are transported back.
We can recall the sounds, the smells, the laughter, as well as the visual, what we drank and ate. Often quoting what some people say. We are completely overwhelmed by ALL of this information, so mutter, ‘A dress’ because it is too much for us to articulate. We much prefer writing, hence texts, emails or posts here.
You cannot phone us, just turn up at our homes or insist we socialise with you. We do it on our terms, we grace you with our presence because for the majority of the time, we are busy. Often people ask for my number and I just simply say, ‘No.’ It is a very powerful word and people think I am rude or abrupt.
Do I care I have offended them ? I do not waste my energy. Only we know, how truly difficult it is to be diagnosed. A level of 74 mg/L is pretty rubbish. Only we know how our bodies and minds fell apart. How we survived and are still here to tell the tail.
The tail of a human being is the coccyx which comes from Greek meaning cuckoo. I put in writing to a health professional that one of my hobbies was bird watching; wanting them to know more about me as a person and how I loved nature. They still did not ‘get it’.
Here’s my local grebe. He does like the deep dive. 😁
I think on an old post of fbirder
Yes, I think that you are right . fbirder had useful information. Could be a touch acerbic ! I crossed swords with him once ! OUCH ! But I miss him !
Me too.
Yes fbirder was quite helpful… What happened to him? Do you know ?
He was rude to members on this forum and also to the moderators . After several warnings he was banned . several of us asked that he be reinstated , but it was not to be .
Thankyou for replying,,, well, yes he had this tendency to be rather rude. It’s a shame because his input was most helpful. 🌺
Maybe, it was a symptom of his Pernicious Anaemia or another comorbid illness. I hope fbirder knows he is missed and we all admired his input.
A very close friend’s father had a stroke and his whole personality changed. The pleasant, intelligent, courteous man used profanities and made sexual connotations to the nursing staff. He even made advances. Two care homes could not see past his behaviour.
The part of his brain that had been affected included the bit responsible to stop impulsivity and disinhibition. The case of Phineas Gage was pivotal in finding out what the front of the brain was responsible for. In 1848, the previously hardworking railway worker suffered a Traumatic Brain Injury (TBI). He physically recovered but he was unemployable due to his irresponsibility, untrustworthiness and aggressiveness. 😞
Fbirder once said that he knew if he needed more B12 because the people around him would tell him so in no uncertain terms.
For many of us, the surest sign of being in need of B12 is the wish to get away from people - yesterday on the bus, almost everyone was getting on my nerves; too close, too loud. Swinging backpacks too near to my face, noisy phone conversations. Final straw was the man in front of me, slumped back in his seat listening to some "lecturer" on a phone held horizontally close to his ear, but almost as close to my own.
Me, yes, without a doubt - but also a little bit them !
Yes THAT. The bright lights, everything is too fast, too loud. No, run to the hills. I can’t my body doesn’t work. Taxi ???
Yesterday, I went for a swim. I walked into changing rooms, the heat, I sat down and started dry heaving. Another woman was sweating, just changed and was fanning herself. You could tell it wasn’t from her swim but the warmth was too much for her. She repeated 3 times, It’s too hot. I asked whether she had an illness. Sadly, she was under oncology. Then she stated, My thermostat is broken.
No need to understand the complexity of it. Our blue and red wiring is hinky*.
A forensic scientist in NCIS uses the term, hinky, to say when something is wrong or amiss.
I have been trying to get help for my B12 deficiency for 10 years. The problem started when I took B12 tablets for tiredness, muscle weakness and palpitations. The doctor's test came back that I was fully stocked with the vitamin. I found a private test but this required that I stop taking the tablets for a week, this I did. On the fourth day, I was having bad palpitations. I phoned 111 and asked if they thought I should go to the doctor in the morning, as he had said I had no heart problems. They sent an ambulance that took my straight to hospital, after a test. There my heart was recorded as 130 bpm. Since then I have developed many more symptoms, breathlessness, tinnitus in one ear, burning hands and feet, many more but the worst are the pins and needles. I waited a year for a heart scan, which said the my heart is fine, and 10 months for the hospital to look into it further, now they want another scan which may mean another year to wait. I read that if the pins and needles goes on for too long, it can become permanent and lead to amputation. I have taken more and more tablets, to keep the pins and needles and palpitations away, and now I am taking 22 a day!
I need help to get private the injections that I hope will cure my problems.
When I had worsening arrhythmia, I was sent to the hospital by the GP for a 24-hr heart monitor. "Ventricular ectopics", I was told, which can start for no reason, cause a lot of discomfort but not develop into anything serious, and stop for no reason. No known cause. Statins were offered to me but I decided to wait and see if it would go. A few months later, it did. It now is, as it was before, an occasional blip.
I really think it was "just" another B12 deficiency symptom.
I also think that my angular cheilitis, burning tongue, hair loss, memory loss, muscle loss, mood swings and anxiety are B12 deficiency symptoms. Life-altering, some of them, but others just a long-term irritant. No consultant seems to want to make any such link, certainly not on paper.
But with my heart, I was worried - both my parents had heart conditions that eventually killed them. I needed to know what it was.... from an expert.
I think you too need answers from an expert. I do not know of anyone who has had to have an amputation due to numbness or pins and needles from B12 deficiency. That doesn't mean it has never happened, just that if it has, it must have been a very rare and drastic case.
The best answer for you can't be 22 tablets a day.
Where B12 deficiency is concerned, this is a neurological symptom and should be treated by an injection every other day commencing as soon as possible. Nerve damage can take a long time to repair, but even those who have had severe or long-term nerve damage have had some success with this. Some have patches or areas that never quite return to normal, but I can't recall anyone here posting that they had an amputation.
Do you drop things or misjudge their distance from you ? Do you fall or are you dizzy or unsteady ? Can you feel your feet on the pavement when you walk ?
All the above are concerns for a GP (or should be). I would ask to see a neurologist. I would also list all of your symptoms and their severity/frequency daily. If your GP does not believe that you are B12 deficient [and this would be a sensible guess given your symptoms], then what does s/he think is the problem ? There must be a few other options - so why haven't they been eliminated as possibilities ?
How about asking for a B12 trial ? With a daily symptoms chart/diary, it would be easy to demonstrate where improvements are starting to make your life easier- and if they don't and you continue to worsen, B12 is a harmless vitamin and you will be that bit nearer to your neurologist appointment. Agree on a trial that will give you a fair chance to improve: NICE guidelines would suggest every other day injections for neurological symptoms with a review at 3 weeks (not an end- a discussion regarding progress).
Have you had a serum B12 test, an active B12 test, a homocysteine or methylmalonic acid test, or an IFab test ? How are your folate, ferritin, vitamin D and thyroid doing ?
You need to start with a medical professional who will listen and take this seriously rather than a "B12 expert".
You gave Darkvarnish9 excellent advice . But trying to get an appointment with a GP is difficult .And his/her GP has said that the B12 result is OK so sent on his or hers way…. A familiar story …..
And to get an NHS referral is a matter of many months . The situation in the NHS is dire now
Yes it’s possible to get a private referral to a consultant , at a cost ( £250.00!)
. A real scandal . Darkvarnish9 has been trying to get help for 10 years .He/she must be feeling so very very desperate now . It’s a nightmare situation.
Many of us on this forum have been in Darkvarnish9s shoes , and it is truly of nightmarish proportions .That’s no exaggeration . …
When I look back on the time of confrontation with my GP i feel mentally ill . I was treated with utter contempt . Didn’t even get an apology when I got a privately obtained positive IFAB test .
The whole horrible experience has destroyed my faith in doctors . I have now an irreversible neurological symptom . But will be for ever grateful to this forum for the help that I received in obtaining information on self -injection .
.
I have never heard that the pins and needles can lead to amputation .We do know that some PA patients can have a normal B12 reading and be B12 deficient . With the symptoms that you have , you need B12 injections . As you have been stone-walled so far , you need to get B12 injections privately or self inject .
You could consult a private doctor at a private hospital ( Nuffield etc) That's what I did initially .
You can get B12 injections from some beauty parlours and hairdressers . If they offer them for non medical reasons this is legitimate . You could do this to find out if B12 injections will help
. You need to have at least 2 injections a week , called “ loading doses” Probably costing about £30 each , but I don’t know .
You can self inject , which is the cheapest way of course .
If you woukd like to self inject , you can get all the information from this forum
. Although i did eventually get a positive B12 diagnosis- a positive Intrinsic Factor Antibodies test , I was unable to get an injection more frequently than once every three months! ( my GP said that more often would be toxic !!!! ( complete and utter nonsense -B12 cannot be overdosed )
I have self injected for 9 years using the I.M . method ( Intra -Muscular) This requires a 1 inch needle . But i’ve now found that the sub-cutaneous method works as well , using a short 6mm needle . This is much less inhibiting ! It is a recommended method in Germany which is where we get our supplies of B12 ampoules from . if you would like details of how to self inject, just ask the forum. Best wishes .
.
Yes, hideously low and I was staggered when I was diagnosed but I had felt tired and rough and low and “old” for ages but I just kept going as when I had symptoms like chest pains, dizziness, and swollen tongue GPs said I was ok. It was a chance meeting with my GP who thought I didn’t look well and she invited me for a blood test. She was as shocked as me at the test results.
However looking back at photos I look grey and my skin is dull and I look tired and strained but that’s the benefit of hindsight It’s such a gradual decline you don’t notice until it impacts on your life or gives symptoms
But happily a year in I am 80% recovered a lot due to this forum and self treating. But it’s ever present and I can’t take feeling well for granted as it’s very much engineered at the moment.
🤗🤗🤗
It is this gradual decline and the acceptance of one symptom after another, clearly pointing to some bigger problem, that worries me the most..... why would you bother going to your GP with something like yellow-grey skin or thinning hair ? Besides, given the current system, you'd never get past the phone-call to the receptionist !
Yet if this is caught earlier, it seems much easier to treat effectively. This is why early symptoms need to be known by GPs and nurses. And us.
Especially us.
Once you get to the stage where you are losing hours and words, confused, anxious, confrontational and irrational, you are no longer able to explain how you feel. While by then, it may be obvious that you need help, it does not mean that the medical profession will make the B12 connection. And without that test result, you still won't get the treatment you need.
Hi Cherylclaire
This described me exactly a year ago "you are losing hours and words, confused, anxious, confrontational and irrational, you are no longer able to explain how you feel." Yes, totally agree as its a death by a thousand cuts - no one symptom is a red flag in itself - and that is when they offer an anti-depressant because they think you are depressed and neglecting yourself!
It is for that very reason that I steer a wide berth from my GP whenever possible and I will not accept any medication until I have researched it, including antibiotics which I have accepted on prescription on the rare occasions they are suggested and I let them know if I didn't use the script - I have only used the script on one one occasion.
🤗🤗🤗
I refused antidepressants three times. Amitriptyline.
I also refused statins after being diagnosed with "ventricular ectopics" (no photo opportunity there !) - which apparently can start for no known reason and stop in the same sudden way. Once I found out that this was the case, it seemed more sensible to wait and see. I waited and it did go away about two or three months later.
Probably another B12 thing - arrhythmia mentioned on most useful symptoms lists.
As for antibiotics: Being previously a quite healthy person, I haven't needed them much prior to B12 deficiency, but because you are more susceptible to infections and less able to heal, these became an inevitable answer sometimes. Each time, I had a "bad reaction" to them not experienced previously: constant headache and bad vertigo. Finished the courses anyway, because I had gum infections etc which needed to heal prior to treatment.
Probably also another B12 thing - antibiotics can deplete B12.
Anything else I've been offered/ has been suggested, I have taken/tried at various times: B12 Boost spray (did nothing at all for me), vitamin D3 and raloxifene (for osteoporosis) , folic acid, multivitamins, iron tablets, co-enzyme Q10, magnesium bath salts, and nipple cream (100% lanolin) for my sore mouth. This last the most obviously effective for me - so thanks, sheep !
Yes Cherylclaire
I suffered arrhythmia and twice was in A&E with suspected heart attack and each time my bloods, blood pressure, ECG all “amazing for my age” but now B12 is addressed I am absolutely fine and can no longer “hear” and “feel” my heart beating … but it still is I hope !🤪🤪
I rely on honey comb with propolis for anything to do with illness - really boosts the immune system. And amy mouth issues I gargle with warm water and pink sea salt - seems to sort me out.
Hang in there and continue to row your own boat.
🤗🤗🤗
I was offered on 5 occasions 1. Amytripyline. 10mg
Prescribed up to 50mg a day!!!
I did trial this in desperation after a 111 call to try and reduce hideous migraines . That is 2mg! For 10 days
2. Diazipam( 1mg used 3 times to knock myself out as in so much daily pain.
Prescribed 6mg a day !!!
3 .sertaline offered 4 times. Twice actuslly paying for prescription as told would help headaches.
Gp convinced would help
Didn't take it
4. Sodium valporate ...not taken
5.
Clonidine ....not taken
6. Gaberpentin ...not taken
7. Duloxetine ...not taken
8.sumertriptin ( had in for an emergency
9. Prochlorperizine ...not used bit paid for
10. Propranolol...not taken
11. HRT . Trialled only lasted 3 weeks .
I was a mess and was given the mini pill to help come off it
After a 6 day migraine I thought would finish me.
I was using too many paracetamol and ibuprofen but alternated.
Tied loads of different painkillers as a one off and a short time in my system .
B12 sprays ,tablets . ( did nothing)
Multivits
Prescribed ferrous fumarate 210
Vit D 3000 daily previously had Prescribed loading dose.
4 rounds of antibiotics, dental work.
An anti fungi drug and liquid
Prior to all this only medication wax the odd paracetamol .
Antibiotics if needed.
Drugs are needed .
I just did not like the trial and error approach without knowing the cause .
So scared drugs woukd mask what was going on and get even more involved .
I'm sure I'm not alone in being offered all this.
I do seem very sensitive to any drug.
My daughter did well on amytripyline for months .
To manage pain.
Was also reluctant in trying drug after drug.
Olive oil out of 15 shampoos znd oiks for scalp works okay.
3 treatment shampoos still used at times....
Nisrol
Betacap Prescribed not tried yet .
All very scary
Definitely the wait and see approach as you did ,when possible.
Hello, just trying to understand all this. Are you sayig they gave you all these things but didnt test your B12 levels and that was the problem ? Have they tested you now and are you having B12 injctions and feeling better?
Also interested in what you say aout scalp issues ? I have an itchy scalp at the back of my head and a sore scalp if I put my hair up so hairs fall in a different pisition. Theres no rash or anything to see. Is this a symptom of B12 defiiency?
My B12 was on the low end and I had parietal cell antiodies but still had some intrinsic factor I think so GP said it was watch and wait and suggested B12 spray. Ive used this for 6 months and levels have come up but is that helping. I can see its bypassing the gastric system that way but is it this inactive thing? After 3 monthst I was tested and suddenly had low folate. So they gave me 3 months of folic acid. I dont eat red meat, eat chicken and dairy and eggs and veg etc
Yes I did have a b12 serum blood test eventually.B12 is treated before folate
If your deficiency dietary. oral b12 and sprays will work.
You will soon know if they are not working by symptoms
I've been on b12 injections for nearly 5 years.
I tried b12 sprays high dose tablets but they didn't help me as I've an absorbtion problem.
Hair loss ect csn be an iron / ferritin deficiency as well as b12 / folate .
Cherylclaire,
Thought : a separate post for the drugs we have wrongly been offered and prescribed ?
So, it is similar to chapters of a book.
Title: Pernicious Anaemia/ Vitamin B12 deficiency for Dummies.
John Wiley and Sons have published 400 science and technology books in this range.
As well as the above, the back of my tongue felt wooden, so I couldn't swallow properly. It was easy to choke on liquids.
The worst part for me was the diminished cognitive function - brain fog, impossible fatigue and sleepiness, and memory loss. I couldn't think clearly enough to be able to talk fluently - after more than 8 years of daily SI that's still improving.
I swayed and went in slight circles as I walked; I suddenly couldn't ride a bike and felt weird on a horse (until then, horse riding was like I was part of the animal) because my balance was affected.
I stopped being able to run (even for a bus) because it jarred my brain. That doesn't even sound like a thing.
Everything can be a "thing" with B12d, can't it!
You only really know it was that once you get better!
Still trying with the running - more about not being fit now though. Hard to get any muscles back, isn't it ?
It really is, especially if your nerves are at all compromised.
Apparently it takes 6 weeks to build a muscle from good nerve stimulation so if your nerves aren't working optimally then it takes longer.
I had pneumonia and pleurisy at the end of November last year and I had to just give up and lie flat for weeks (and it took until I got covid in mid May before I completely got over the pleurisy) and it took ages to get fit again!
"No pain, no gain" loses its motivating ability when it tends to be all pain and very little gain, for weeks on end, doesn't it! However I got there in the end and am enjoying being fitter again now.
It is though I still get it when trying to walk a little further .My skull tightens . Balance goes and tinnitus starts . Then the stagger eslk and nausea.
Might be vestibular.
Shocked that happened last week . Then 2 days later vestibular migraine.
A reminder!!
Can't seem to build my fitness back up without literally pains in the head ??
Body is stronger
No idea that I did this until the following day. I was numb from the knees down. Therefore, we are at increased risk of :-
1) Falls.
2) Burns.
3) Abrasions and cuts.
Most of my images are just for a gastroenterologist. Say no more. I have lots of videos, unable to coordinate my body, walking like Quasimodo. Shivering when it’s only mildly cold.
Awful black toenails ignored 🙁
When I had the foot-flop day, I tripped over the framework of a raised vegetable bed I was making in the garden. I had cut my leg but since I couldn't feel it or see it, as I was covered in mud and sawdust, and did not find out till I had a bath later.
The cut did not heal well, went like a bullet-hole (reminiscent of my mum's ulcerated legs) and healed eventually like a raised pale oval of rough skin (maybe like Nackapan ?) - but took about two or three months.
A lockdown clown.
Healing takes so looong
Early signs I initially ignored/ lived with me then recognised as knew something wrong.G.p ? X1 over 50s health check and ignored again.
Life stresses/ menopause was told then told depressed.
Without looking up my warning signs .
So from memory !!!
Vision problems. ( kept querying glass prescription)
Very dry skin.
Fatigue
Forgetfulness.
Walking into things
Fell off a style( known to me all my life ) that stood out as very odd/ worrying.
Defeated.
Vacant periods . ( lost hours)
Anxiety
Paranoid felt like I was being lied to ( sometimes was so even more confusing )
Couldnt look up without feeling queasy.
Coukdnt find the right words
2 more falls ,tripping up
Felt like a rope round my waist pulling me back whilst cycling .
Again stood out as used to cycling in all weather's
Same feeling when swimming .
Reluctant to walk far as ached so badly .
Concentration soon very short .
Couldnt keto up with TV programmes.
Then a very bad fall after swimming leaving a petrol station hitting my head hard on concrete .
Legs got tied up in an unbreakable paper tie.
So not a sudden drop so dismissed as a medical cause.
2 week 'recovery '
Again to G.p as breathing difficulties / bruised ribs ,face and knee .
5 weeks after that .
Stroke like symptoms after reaching up from standing on a stool in the garden cutting vines.
Stagger walk, pulled violently to one side to the floor . Couldnt get up.
Eventually crawled onto the house .
Drank milk thinking blood sugars.
Vertigo attack .
Side of face stuck to the floor .
Lost time;
bad fall 14th August
Stroke like symptoms/ vertigo 1stOct
Bloods including b12 taken 18th Oct
B12 loading early Nov.
Brain Mri as deteriorated in loading doses Nov.
B12
106 pg/ ML ( 200-900) that my G.p thought a 'red herring '
Not low enough to cause such severe symptoms!!
My ex G.p friend had never come across such a low reading!
Did think b12 loafing doses would sort me.
Approaching the 5 year mark in a week.
Photos to follow of symptoms .
Medics not interested in looking at ??
They spent more time looking for something else .
Yes rule things out but too many 'classic symptoms ' forming a clear picture to a well trained 'eye'
Try not to dwell on it but am very clear that early treatment gives much better outcomes.
I got very ill just as my daughter finally got a first diagnosis of PA / b12 def
Her first ever b12 82 or 86 megobolastic anaemia . Folate 2 . Ferritin 9 .
And so on .
So no links made at the time as i was told stressed ( I was ) told depressed ( I was not) told the menopause ( convinced not all menopause symptoms !!)
We know our bodies .
Hormonal changes one of the highest 'risk factors / triggers .
Puberty
Menopause.
Male reduction in testosterone
Childbirth
Of course the list continues as we know ...
Basics being missed
A lumber puncture and brain mri amongst many many tests before a b12 level finally done .( daughter)
But too late to totally reverse .
A few photos to follow.
Might help others .
Very difficult to push for what wd don't know we are pushing for.
I pushed for an iron blood test.
To get a blood test !!
At that stage if b12 included on the form to tick i think it would've been done .
.
The paranoia - I associated that with the loss of ability to read people's faces - even people very close to me. I was no longer sure what they were saying or whether that was what they really meant. Kept telling people to keep it simple for me.
My ability to walk never got as bad as your's. When trying to get back uphill with shopping, I remember gritting teeth and fighting tears, and not understanding .... when I got home realising it had taken hours.
Legs shaking when standing still - preparing dinner for example -felt exactly as if I was leaning backwards slightly, not a position you could keep up for any length of time. Lower back in compression, upper legs in tension. One of my ex-students (then teaching) said "I knew you were ill, because every time I saw you, you were sitting. You never sat down."
Thanks for the photos: When I saw them I remembered trying to photograph scalp, as very painful to brush hair, and looked like sore red patches, tiny blisters - difficult to get that angle, isn't it ?
Also told depressed and offered antibiotics three times initially. Women in late 50's seem to be almost expected to be depressed, even by female doctors. Now that's depressing.
The lockdowns actually did me a great favour despite some lingering problems. Diagnosed in 1989, 8-weekly injections, I didn't know any better, had memory, nerve problems, digestive problems and foot-drop since childhood, plus so many more I don't want to bore you. Injections stopped in January 2020 and health deteriorated rapidly so much that I was about to be taken into a care home.
Just in time I found this website, bought ampoules and syringes, etc., and started injections once a month. Not enough difference so I went by other information from here. Despite doctors' rejection of this I now inject weekly, sometimes more often.
Result is that digestive problems almost gone, so too foot drop, nerve problems. Memory much better, and so on. Realization came that since childhood, nearly 80 years ago, I had been having all of these symptoms, totally ignored by the medical profession.
Now, though I can't quite say 'never better', I was actually able to say to someone who commented on how different I seemed, 'I actually feel ALIVE now'.
So thankyou NHS for stopping my injections and giving me cause to stop trusting and believing everything my doctors told me.
Still so little known about why some of us need more, sometimes much more, to enable us to have a life of some sort. It would be good to find out finally why that should be. We could continue in peace with discovering our own optimal frequency without being made to feel like naughty children.
The nearest we have come to an answer so far is the initial trialling by the Pernicious Anaemia Society - which found a significant difference between those who can function well on the NHS frequency and those who are unable to do so. Since then, no further information or breakthrough has been reported.
I remain hopeful. Glad you are alive, tomdickharry, and dodged the care home.
Footdrop, so I have read, is a common condition in late-stage alcoholism. This would surely tie in with B12 deficiency. Footdrop observed in a child, one would have thought, ought to have been quite an unusual occurrence - and investigated further.
Not boring - appalling.
Stay well.
Goodness .My daugytef also had symptoms from childhood .
I took her seriously.
She had a barage of tests .
Thought that was long enough .
? 20 yesrs until everything fell into place.
So glad you' feel alive '
So glad you inject weekly or whenever you need to .
My mum now 94 . She deteriates badly if b12 I jection late.
So gradual / subtle I miss it at times.
She then literally wakes up again .
Memory back ect.
Sorry I missed your reply
More symptoms
Not sure if pre or during loading doses .O do remember cherylclair suggesting taking photographs to specialists appointments hence taking some
Is dry heals also a symptom? I am having very dry and hard heals.
One more. I do remember you suggesting taking photos to specialist appointments as often gone by time seen
These photos are informative; I have never seen these things illustrated.
I had vitiligo for years without realising it was that. Not that noticeable on my skin until I tanned, then I had very small white patches. More pronounced on my hand. It began as a small and cute heart shape then slowly spread.
In hind site, I also started greying in my 20s. Very stylishly I must say - people assumed I had streaks put it 😊
My mum had vitiligo ( another autoimmune disease ) which spread gradually from a vaccination on her arm that she had as a girl - she couldn't remember what for. It spread over one shoulder and across one side of her chest eventually. Autoimmune conditions generally mean you can get others - she also had psoriasis.
She tried to tell the nurses treating her ulcerated legs that the ulcers were appearing in the places where her psoriasis sites had been - but this did not seem to register. They thought she was unsteady and perhaps banging her legs - yes, if just shins, they may have had a point, but calves ? Far less likely. The GP kept taking swabs because more and more would appear - nothing found. Manuka honey was used in the treatment- very effective - but as healing occurred at one site, still more would appear.
Wwwdot recommended honeycomb with propolis earlier in this post as a boost to immune system.
I remember reading a B12 deficiency symptoms list where something akin to vitiligo was mentioned - but quite specific in region: small white dots on outer side of forearms. Can't now find it again - hopefully someone will have seen it on a list too.
As a kid, I had a very unruly and unbrushable white streak at the back. Not quite so stylish !
Ah yes, small white dots is exactly what I had/have. Seen vitiligo as a symptom of B12D too.
Bazinga !! We are talking and posting medical images of P.A./vitamin B12 deficiency on this thread. The word I have been looking for is pathognomonic.
A pathognomonic sign is a particular sign whose presence means that a particular disease is present beyond any doubt.
I posted a picture on this thread of a bird which is British slang for a ‘woman’. Rhiannon Parker, a researcher, spent 5 years analysing 6,000 images from 17 anatomy textbooks. Only 36 % were female.
So, Cherylclaire,
This thread is a great idea and who knows a book ? 🤷♀️
A pathognomonic sign - wonderful !
36% - that high ? I have looked at some anatomy books and the default position is usually male- unless childbirth or Charlies (British slang for "breasts") crop up, usually near the end.
Well a pathognomonic sign for B12 deficiency would have to be applicable to both males and females, wouldn't it ?
Here's something quite unusual - not a Baby Shark attack. Known as Golfer's rash, Disney rash but actually a form of vasculitis (so possibly also has a B12 def. connection). No, I'm not a golfer or a cartoon.
Hi, sorry excellent thread but I have got a little confused. Are you saying the sudden appearance of a vasculitis rash is also a symptom of B12/folate deficiency. This happens to me when walking in hot weather. As well as the memory issues - forgetting the thread in my conversation , whether I had just taken a supplement etc, piecrust tongue, tinnitus.
I had a routine annual blood test in April (re Autoimmune) but not had since Covid and was found to be Folate deficient . My B12 was 600 but I take a B12 sublingual. I had never been folate deficient before, in blood tests and hadn't been concerned about before as I eat lots of fruit and veg. My homocysteine level (which I keep an eye on in blood tests ) had shot up too because of being folate deficient. I am now taking a B vit supplement containing folate and B12 to address the folate
But my hair over the last month is really falling out and worse of all I am having vertigo attacks . 1 in May but my husband caught me but 2 more in the last couple of weeks. No warning , just walking forward on I countryside path - I stagger backwards on my heels rapidly (flat walking boots) and then fall flat backwards from standing smashing into the ground. Bruised badly , thankful I didn't break anything. The last time a week ago , I was bending over tying my shoe laces, stood up staggered backwards tiny couple of staggers but was ok as fell into our parked car
This has really shaken me up , I now daren't go out on my own or even with others as they may not catch me.
I am hoping this is B12 and folate deficiency.
I am correct arent I that B12 doesn't work efficiently in the body without sufficient folate?
I'd say that this sounds like B12 deficiency, but there are other things that it could be.
Nackapan had similar problems with vertigo and falls.
You really should see a GP - whatever this turns out to be, it isn't something that you should leave. If you are getting regular blood tests for autoimmune reasons, B12 should be included because PA is an incurable autoimmune condition.
Hair loss: this can be caused by B12/ferritin/folate deficiency. Or a combination. You have not mentioned any ferritin results: do get this checked if it hasn't been.
It may be that you aren't able to do well on an oral supplement/ sublingual. Not everyone does. Your test result of 600 (there are two units of measurement used but neither would make you appear deficient) in April : it is possible to have a higher serum B12 result, yet not be able to utilise the B12 in your bloodstream because of a transport malfunction which means that your B12 cannot reach cells/tissue. This is called functional B12 deficiency and can be detected by an MMA test. If MMA is not making the link with serum B12 in bloodstream , your serum MMA would be high.
I would not take folate before B12 issues addressed, but in this case it is difficult to say. Do you take a B12 supplement because you have been found to be deficient in the past ?
I don't know whether vasculitis has a link with B12 deficiency - I would think so. There are other reasons too, I'm sure. But it seems to be known as Golfer's rash because it occurs due to too much physical exertion - this certainly does not apply to me !
It worries me that you have not yet contacted your GP about an appointment regarding these falls. Go, and take your husband with you. Not to catch you, but to back you up !
Thanks Cherrylclaire
Our GP is shocking for trying to get an appointment. I have tried so manytimes being no.28 in the queue and when have held on for an hour - sorry no appointments/callbacks, try again tomorrow. It's laughable. But low and behold no. 4 in the queue and did get an app last Monday. When I arrived it was with a nurse not a doctor but she did spend over half an hour with me. My main concern was to add a full iron panel to my blood tests that I am about to go for re folate deficiency. And she happily added, that's not the usual reaction from a GP. My Ferritin is high - too high. But with autoimmune the body stores iron as feels under threat and leaves little for the body to access (anemia of inflammation)
Originally yrs ago I had burning mouth ( although at the time did not recognise tingling limbs ) had not found this site then. I asked for B12 blood test. GP phoned my B12 level fine. Everything I googled re burning mouth said B12 B12 B12! So I started supplementing with a 5000mcg sublingual and the burning mouth stopped. Sometime later I found that, I could ask for test result print outs and I noted that my B12 had been 191 - normal range min 190 (now higher) I couldn't believe that with symptoms she had said fine.
I then with written support from this wonderful site tackled my GP. She caved in and referred me to a haematologist who would not accept the referral. Basically because my B12 serum was high, well I was constantly taking B12 supplement. I asked for a print out of the GP referral, it was dreadfull (Please help me with this woman, she is convinced, blah blah blah - no recognition of symptoms or that B12 deficiency in the family - my grandma, they found when she developed Parkinsons and my Dad.
So I have taken sublingual for years. Folate always seemed ok and I managed to bring my homocysteine lower. Unfortunately my folate is deficient and homocysteine shot up abnormal high
Memory issues /brain fog for years
Now dizziness (falling has made me shit scared)
And hair falling out
Thanks Cherryclaire, sorry late reply , absolutely shocking cold started Thursday. I will not go for my blood test until better as the results will be distorted esp C Reactive Protein. Taking Supplement HomocysteX Plus
25mg Riboflavin
15mg B6
800mcg Folate (as Quatrefolic)
1000mcg methyl and adenosyl
700mgTrimethyl Glycine
Wishing you luck - and wishing you better.
LynneG, just a little something to add regarding your question about B12 not working efficiently without folate.
From a biochemistry perspective it's actually the other way round, it's the folate that is doing the work and B12 is enabling that work in what's called the "folate" and "methionine" cycles.
B12 in the form of methylcobalamin, works as part of an enzyme (something that speeds reactions) called methionine synthase that enables these metabolic cycles to run properly.
Going with my favourite car analogy purposes it is less like a fuel but more a component of engine oil without which the engine can't run properly.
There is a second reaction that is critically important for energy metabolism and B12 in its adenosylcobalamin form is needed there, but this cycle depends on almost every other B vitamin too!
Hope you've had your leg looked at if yet another symptom appeared !
No - this an old one that came and went. I thought to post it to see if this is a common condition or if anyone knew of it's relationship (if any) to B12 deficiency. Timing right.
Yet another symptom that came and went for me was a 'black eye 'But actually looked bright red like broken blood vessels as your leg does
Nevef went black as not bruised .????
I think all of these things connected to b12 deficiency.
Pity I've not photo if my eye
Yes. It really helps to see.
I have a dark spiderweb at inner side of knee joint (small broken vein ?) that goes black when hot - after a bath for example. Not exactly a bruise. Had it for probably 6 years now. Is this perhaps what they call purpura ?
Swelling below that - like water retention, but that is both legs. That may explain the joint-pain at night- can't rest one leg on the other, too much accumulating pressure, and stiff feet in the morning. Could be circulation issues ? Whether B12 related or not, timing seems right.
Could of course be just age-related, or less physical activity since I stopped working. Difficult to know, isn't it ?
Yes difficult to know .However tightness at thd back of my heels went ?
Really bad beforek had a few months of b12 injections
Better for less activity? or went because of 12 treatment.
The joint pain for me initially coincided with the menopause .
Forever turning in bed only to yo be woken by another pain to make me move again.
Sometimes totally resolved by a b12 injection?
Too many times too be a coincidence .
Comparing to friends aches snd pains through aging simply do not seem comparable though.
Everyone in aging seem to have to be careful with their backs.
And so it goes on....
I'm now wondering if Pascoe every four days would work better for me at every three. But because this was the frequency I used previously, I thought, given the additional 1/2 in the Pascoe, every four days would still be a slight increase (?) - if any of that makes sense to you.
[It could of course just be too much going on lately and a bit of stress overload. ]
It does make sense to think will last longer as a higher dose.
But how much we can use from each injection ?or retain it another matter.
I keep hoping an IM will last longer than an sc b12 injection .
As it woukd make sense if it did as deeper.
For me no difference apart from it goes in quicker.
But too scared to change the routine.
Try old regime and inject 1mg only ??Seems a waste but if needs must, worth a try .
My IM b12 booked but fell on day 7 .
Didn't make it .
The day before gave myself 1/2 a 1mg. sc injection of b12 which worked thank goodness
as felt so awful.
and had the IM 1mg day after .
Then continued as before.
Never done that before .
I seem to need 5-7th day
Day one is 💉 injection day.
Definitely lately depends on stress or activity .
I know not everything is b12 .
But seemingly 90% is of late.
Sometimes there seems no rhyme or reason .
🤷♀️......Others may have a different take?
It did also strike me as strange that a person can experience both painless footdrop requiring over-lifting from the knee to avoid tripping and it's total opposite- stiff painful feet and tight heels.
Both cases easily rectifiable in a string puppet: tighten / loosen foot-to-kneecap string - but a complete mystery in a person !
Cannot bring myself to throw away a single drop of B12. Think you are right and this is a retention issue. We are not only different from each other but also ever-changing in needs personally. Stress always/ physical activity sometimes: hard to predict, difficult to rectify, impossible to learn from.
Plod on, I guess.
I was surprised at 36%. She was in Oz, maybe more Sheila’s in positions of power.
Oh my goodness - vasculitis. 😱 The images you are posting, I am astounded.
If I was still wearing my scrubs, I would take someone aside and give them a right royal telling off. Why did you not do something sooner ? You left that poor woman. This is unacceptable. Then I would make them apologise, I would introduce myself to you and apologise too. Then do everything I could to help. I would also signpost you to supportive organisations for you to complain to.
The NHS have a Duty of Candour. Depending where you live in the U.K., this Law has different dates.
England - 5 October 2020.
Wales - 1 April 2023.
Scotland - 1st April 2018
Does anybody actually really think that we are/the walking wounded ? We survived something similar to a zombie apocalypse. As a movie buff, the film World War Z springs to mind.
Do we get commended or recognised by society for our valiance ? I know my response and that is for another chapter, entirely.
😘
I really believe that some of that is my own fault. When I got this leg rash, I didn't bother to go to see anyone about it. I think I was suffering from symptom overload by then - and trying hard to make a phased return-to-work work.
When I have been to the GP with problems, she has sent me to consultants for tests and answers. I have now come to the end of what is available.
The angular cheilitis and burning tongue and salivary duct strictures were still until recently being looked at by Oral Medicine consultants. That has been going on for years now. Hoping that an answer would be forthcoming, and in admiration of their persistence - but mostly wishing that they would make the link to B12 deficiency -and then to report that back to my GP in writing.
Sadly, she has since left the practice and I haven't got the energy to start all over again with a new doctor seven years on. Especially when one of them got my NHS injections stopped because I was making up the difference between what I was getting and what I needed !
Psoriasis that doesn't heal. Under boobs, behind the ears. Flaky scalp.Sinusitis.
Mouth ulcers.
Dental pain, to the point of having a healthy tooth pulled.
Dehydration causing bad leg pain, then diagnosed as gout.
Tired, tired, tired. Life slipping by, everyone else getting on and you are walking through treacle. Everything reducing. Eventually just not caring and not wanting to get out of bed.
Short to long term memory problems. Someone telling me their name repeatedly and instantly forgetting it. I know I know you, but I can't place you, or remember your name. Highly difficult/embarrassing in a work context!
Heart rate and breathlessness.
Years ago, so B12 deficient, but not PA, eating liver, or prawns and feeling a lot better, but not equating cause and effect. Doing the Atkins diet and feeling good on lots of meat - but couldn't afford to keep it up! Going veggie to be "healthy" and feeling crap. Living with my vegetarian mother and getting very depressed, and sneaking out for burgers!
If your B12 deficiency is only to do with diet, then yes - a change of diet may be enough, or perhaps a loading dose and then tablets to supplement thereafter.
But a vegetarian can get sufficient B12 from their diet : cheese, eggs, Marmite, Special K and Kokomilk all contain B12. There are a lot of foods with B12 supplements available now.
Important to remember that a vegetarian or a vegan can also have additional B12 deficiency issues such as pernicious anaemia, functional B12 deficiency or small intestine bacterial overgrowth (SIBO).
My tongue looked exactly like that a few years ago and I was repeatedly told it was due to diabetes. Now, after aggressive B12 injection routine (2/day, 1000mcg) my tongue is beautiful!
Glad to hear it. The latest I've got to tell you is that, on having a dental x-ray, my large unruly tongue was getting in the way, so they abandoned the request and went for an ultra-sound scan instead !
(So not beautiful, more a work in progress... never give up !)
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B12 deficiency?
