I’m 35 years of age and on the Eve of my first b12 injection, I think over my life and the physical and mental health issues I have experienced. Throughout my late teens and twenties, I have struggled a lot with depression, anxiety and fatigue. When I turned 28 in 2015, I started to experience chest tightness and thought nothing of it. I ignored it by not seeing a doctor. I just made it a priority to exercise more and it better, but the symptoms were still there. Then in the middle of 2016, the chest tightness became more pronounced and developed into chest pain. I remember being on the train home from work and having to alight due to the discomfort. Still ignoring it, I just went along with things and put off seeing a doctor.
This chest pain & tightness together with mental health issues persisted. In 2018 I started to experience balance and dizziness when walking. This is when I started to take things more seriously and went to A&E countless times only to be told everything was normal and to book an appointment with my GP. All blood tests always came back satisfactory according to my GP, but I still had symptoms.
In 2019 I then found it difficult to take a deep enough breath. In addition to this I developed a sense of air hunger. I just found it hard to take a deep enough breath.
I also started to have sleep disturbance where I would wake up after 4/5 hours of sleep and couldn’t fall back asleep.
Again I went to my GP complaining about my symptoms, but no action was taken. Only antidepressants and sleeping pills were offered. A bandage approach so to speak.
Present day I still have all of the aforementioned symptoms, but 2022 was the year I said that I had to be firm with my GP and take my health seriously, as I felt I was just withering away. I started to request copies of blood tests and research reference ranges online. I realized that most doctors don’t really care about there patients and it’s just a job to them. 😞
I guess the question that I’m asking is - If it’s possible to have pernicious anemia/functional b12 deficiency for decades without being diagnosed/noticing. I truly believe I’ve had this condition since my teenage years. I truly believe this started with being unable to focus and lack of motivation.
As I approach age 40, I refuse to be at the mercy of a doctor and I will arm myself with knowledge and always challenge my doctor. Too often I have been passive or intimidated by a doctor. No more.
Thanks for reading.
MikeyO
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MikeyO
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Like you I think I have aways suffered from some kind of B12d. Just little things that weren't quite right. I have always been clumsy and had trouble with my balance. Going on fairground rides made me physically sick. Had unexplained faints in my teens. And I have always suffered from anxiety.
I had obvious symptoms for over 15 years before I started b12 treatment, I had to treat myself as NHS refused.
Prior to this, I had minor symptoms that I put down to stress at the time and looking further back and being prone to anxiety and depression, I suspect that there were b12 issues from a young age.
Sally Pacholok's book "Could it be B12?" and Martyn Hooper's book "What you need to know about Pernicious Anaemia and Vitamin B12 deficiency" mention children.
Some of the stories about children with B12 deficiency can be upsetting to read.
Yeah, I was getting headaches and tiredness from around 18. Just thought it was part of life. Those headaches finally went away with B12 injections more than a decade later.
Yes , indeed you can have VitaminB12 deficiency/ P.A. for many years, and not realise it . Your GP is likely to send you on your way with a casual “ Everything normal “ after looking at your blood results . They like treating illnesses with pills from the pharmaceutical industry . . I got this treatment when I was desperate with many symptoms,including totally numb feet ( “idiopathic “was the verdict,with no referral ).
Years later I found out that my B12 result had been well below range , but it had been ignored . So we are really on our own , except that we have the great PAS and this forum . … You can always get help and advice here . .Best wishes .
thanks to everyone that has posted. I just find it a travesty that the active b12 tests at the very least aren’t done on the NHS, just the inadequate serum b12. How many people are out there are being told that their b12 levels are satisfactory or above range due to their serum levels They’re pretty much living substandard lives with a host of issues that they can’t quite pin point the cause.
I’ve got depression - here… take some antidepressants
You can’t sleep - here are sleeping pills
Shortness of breath - it may be anxiety
Many doctors go for this band aid approach, which results in the loss of life it’s a real shame
I think you're right and I think there are two interconnected factors at play.
1. Medics receive minimal training on nutrition. They're trained to look out for the signs and symptoms of B12 and folate anemia but rarely consider it until it's absolutely clear someone is deficient or anemic, i.e. extremely unwell and almost unable to function.
2. Their lack of knowledge is exploited by the Pharmaceutical firms who give them money in return for prescription medication. B12 injections cost them money, and so if a) they have limited understanding of the scale or impact of B12 deficiency (my own gp say he didn't know much about B12) and b) get money from prescription drugs then will default to the prescription drugs.
Plus, it's more targeted, i.e. B12, nutritional, gut issues are complex and holistic. It covers alot of areas and there are no trained gut specialists. Gastro's come close but even their training is pretty limited.
What we need is a revolution in gut health support and as a consequence, knowledge of PA will increase. Until it does, PA will continue to be thought of as a women's problem, for those aged 55 plus. So as a young man, they will not be thinking about PA with you and try to find other reasons.
A huge shame. But the sooner we all wake up to the reality that medical science is not really so advanced, the better. Particularly since more and more evidence points towards Parkinson's disease and other neurological conditions being rooted in the gut brain axis.
Medical training is stuck in a dark age. So we need to push it forwards somehow.
Seems like it took a long time for symptoms to get recognised. Its so hard to know what's wrong but you know something is.
I think it's fairly well known that B12 can be inherited. For me it's not related to PA, not that I can confirm or believe, but to intestinal sensitivity. This rings true in my paternal lineage since I lost my Dad to bowel cancer as a lad and he was 50.
My mother would say it was the stress of being made redundant in the late eighties. But I could never understand how stress could bring on such a deadly conditions which accelerated fast for him.
Throughout my life Ive noticed what I now know as B12 symptoms, but they usually appeared after heavy drinking. I was a City boy in the early 2000's and the boom years were very boozy.
I sometimes would get odd nervous system dysfunctions and heat in the body. Neuropathy symptoms that were quite subtle but there.
I hit 40 and things turned bad. I'd ironically had a few years of low meat intake believing it could cause colon cancer - I was wrong. I was also severely stressed in a job where I bit off more than I could handle.
Pretty much at 40 I had a salivary gland tumour, thyroid nodule, and colon polyps. I didn't drink alot, but wine with meals and was eating alot of London shop foods - Pret, Itsu, Leon this type of thing. I also had problems sleeping.
In two years I had a severe B12 deficiency.
Why did all this happen? I inherited a sensitive bowel. And a bleak combination of stress, less then ideal diet, poor sleep and a bout of food poisoning was too much to handle. W
When the symptoms came, it reminded me of heavy boozing. So I cut back on drink but I think it was too late - the Deficiency had started.
Many people, including the Dr, disbelieved the symptoms. They took alot of convincing.
Now I understand that I cannot live in the same ways as many other people. I can't tolerate a 'fast paced work environment'. I can't drink moderately, if at all now. I need copious amounts of sleep- it goes against everything modern society expects of us and is very unfashionable to talk about. But some people are just more susceptible and the gut is a very delicate organ.
You may well have inherited PA. But you could also have a system that requires alot of maintenance and the right kind of food intake.
Only you know your body and what it can handle. Doctors can guide you, but like you say, keep pushing them. Don't get fobbed off. Always ask for a second opinion.
I think your statement rings true: "Pushing my body too hard."
That's definitely what I was doing in the job I had. Alot of pressure I couldn't fulfill and constant pushing of myself with little or broken sleep. Poor sort of diet and reaching for pastries and coffee to keep going and eating pizzas and alcohol to destress. A terrible combo.
Stress would've likely played a part for you then. And perhaps it is a genetic susceptibility. On my Dad's side, Cancer was rife and took all of them in different forms (on his maternal side). I didn't have much family left after he died, just a cousin or two who were distant. So I don't know if it was B12 but it was certainly less tolerance to stress or lack of sleep. More sensitive I think. Certainly with the gut.
Now I'm working from home, self employed. Couldn't handle office work or getting up at the crack of dawn and running around the country on trains trying to hit targets.
Not surprised that nurses will strike. Enough is enough in the end and we're not robots.
Also found this report very interesting, i.e. stress can alter your gut microbiome but also your eating habits?! So the more stressed you are, the more impact on the gut which then alters your mood and leads you to poorer eating habits.
A vicious cycle that can lead to horrible health issues.
We have 4 generations now with P.A. My great Nephew the latest, diagnosed this year just 2 years of age. The difference in 6 months is amazing. He is having speech therapy, but now running around instead of clinging to his mum. She was aneamic whilst pregnant.
"I thought if left or added to leave. Hidden woujd only show on old posts to keep continuity of posts "
Yes I think that's correct, they keep "Hidden" as the username so that the posts don't just disappear when someone leaves the forum.
"I didn't realise you carried on putting new post out as actually lije a user name thrn?? "
No I don't think that's what's happening. I think the person posted, and then almost immediately left the forum. It seems to have happened a few times recently.
"sallyann?"
sallyannl i mean. Her posts have all turned to "Hidden" as the author. Perhaps to do with the situation with her husband. I hope she is ok.
No - new posts do not appear as Hidden. But I did see one the other day that had changed to Hidden within seconds - the member had decided to leave as soon as they posted.
Until recently, there was a "real" user called Hidden - which should never have been allowed. But the member with that name did post/reply and was then chucked off. And I think no-one would ever be able to sign up using that name.
Now, if you click on Hidden you get an HU "help" message.
PA is an auto-immune disorder of the gut that attacks the mechanism that the body used to absor B12 from food.
The B12 deficiency that results takes a long time to develop because the body stores B12 in the liver and it is when these stores start to become depleted (because the process for reabsorption uses the same mechanism as you use for food). So, symptoms come on very slowly and it can take decades for a full blown deficiency to develop.
I personally would use 'functional deficiency' to refer to high B12 levels with all the symptoms of B12 deficiency, and in that sense it's unlikely that you would have a functional deficiency for years. However, that is very different from saying that because your B12 levels are in the normal range you aren't personally deficient.
Unlike many other micronutrients the body uses the store in the liver to maintain serum B12 levels in quite a tight range, but that range varies a lot from individual to individual which is why the range for B12 is so large. This means that one person's okay would be another persons deficiency level. This makes serum B12 extremely difficult to use as a predictor of B12 status.
If you have an absorption problem then what you would see is a drop in levels over time. Unfortunately the test usually used in the UK - serum B12 - is only accurate to 20% which means you need a significant drop between two tests (more than 20%) to be able to see a drop in levels.
Your ferritin and B12 look fine to me, but in your shoes I would want to raise folate to closer to the top of the range. It's only 38% through the range. Mid range is roughly 15, so I would want a result between approximately 15 and 27.
For many people methylfolate is a better option than folic acid for reasons given in these two links.
just had a look at the table in the third link you posted. The results in my recent test allude to a vitamin b12 deficiency/pernicious anemia.
I forgot to mention that I was supplementing with a multivitamin that contained 600mcg of cyanocobalamin for about three months prior to my most recent test.
I’ll consider supplementing with methyl folate. Are there any brands you’d recommend?
I don't have a specific favourite brand of methylfolate. I go by the reviews and the price at the time I am running out and buy what I can afford.
The results in my recent test allude to a vitamin b12 deficiency/pernicious anemia.
Serum B12 was 2000pg/mL (Range 197-771)
I am not terribly knowledgeable about Pernicious Anaemia - I have a functional deficiency of B12 and keep my levels very high for that reason. I can't say what you should be doing about your B12.
“Cobalamin, or vitamin B12, plays a role as important as iron’s. If iron is your body’s distribution vessel, B12 is the factory – responsible for generating red blood cells, nerves, and even your DNA.”
Quite possible! It sneaks up on you fairly subtly, until it really slams down, at which point you're probably too far in to get all the way back out.
I had a good chance to get completely clear of this 3 years ago, at my first clear symptoms... I went to my GP and told them my supplementation history and that I suspected a B12 deficiency (and told them about neurological symptoms of tingling and numbness which I thought were a match). They sent me away with a diagnosis of "B12 overdose" and a B12 dosage recommendation that would eventually have put me in a wheelchair and ultimately, an early grave. I guess they skipped the "hippocratic oath" part of their training.
Hi MikeyO, I suffered similar chest pains and tightness and the more I worried about it the worse it seemed to get, to the point that I felt as though a was gasping for air and though I was going to die. I though it was heart related and Dr sent me for tests but all OK.
I now know it was panic/anxiety attacks but they seemed to happen for no reason, possibly a symptom of PA not being treated adequately.
I still get them, not as often now that I've taken my treatment into my own hands, and still mostly out of the blue for no reason. When I feel one coming on I've found that I can quickly get it under control with a slow breathing technique.
Welcome to my world, Mikey. I started seeing my GP (at that time) in my early 20s with symptoms of fatigue, joint pain, ‘fuzzy’ brain, memory problems - standard stuff. It took 10 years to get him (and subsequent GPs) to take me seriously. Eventually, after many years, I was diagnosed with PA and had the standard loading dose followed by three monthly injections.
All good. But I’m now 66 and ten years ago I was told I was Type 2 diabetic and the drugs I was prescribed for that totally messed my B12 regime up. So-much-so that whilst I totter into my 70s I’m now on EOD (self-)injections and feeling as crap as when I was first diagnosed. The drug regimes just don’t mix
Glad you have taken control over your health and are no longer passive. Keep it up - even when you get to ‘old-fartdom’ like me. I wish you luck!!
I believe i've always had some B12 related issue, call it a functional deficiency but it definitely got worse as I got into my mid 30's. When I was a little kid, I remember I felt like fainting whenever I would exert myself like running a mile. I always had issues with endurance sports and like you, suffered from anxiety and depression at times. In my early 30's, I took exercise really seriously and pushed myself into running 3 miles 2-3 times a week. i always felt I had to really push myself and it would be slow. By the time I hit 40 though, symptoms like numbness, nausea, tinnitus, and IBS became really bad, until I ended up in the hospital where I realized by B12 number was 122. Made no sense because I had a well balanced diet. After having just about every blood test, GI test, and even MRI, doctors cant figure out why my B12 was so low. I've come to the conclusion that like others on this forum, I have a functional B12 deficiency and injections are the only thing that keep my symptoms from getting too severe although they never really go away. i still cant exercise like I used to and suffer from bouts of fatigue, depression and parasthesia but manageable. Youre not alone brother.
Hi Mikey, just wondered if you've ever had a blood test for coeliac disease? If undiagnosed, it can cause a variety of deficiencies due to malabsorption, including B12. I was diagnosed with coeliac at 52 (after having symptoms such as anaemia all my adult life), continued to have symptoms and was finally diagnosed about 8 years later with autoimmune gastritis. This causes B12 deficiency as you can't produce intrinsic factor due to the damage. GPs usually know very little about coeliac and don't tend to test for it but it can be a root cause of problems. Depression, anxiety snd fatigue can all be symptoms of coeliac and many patients have fobbed off with anti-depressants for years before being diagnosed. I hope you feel much better soon
No I havent been tested for coeliac disease. I had a look over some of the symptoms and some do seem similar to b12 deficiency. To be honest I’m pretty certain I have a malabsorption issue with b12. Back in 2019, I went on a ketogenic diet where I avoided all grain, gluten and I still had the same symptoms that I have now. Dare I say, my chest pain was much worse that year than it is now.
Maybe I’m banking on all my issues being down to b12 deficiency/pernicious anemia, but there’s too many that symptoms that I have that are indicative of the condition.
Today is my first injection. I’ll see how my body reacts. 🤞
I hope the injection goes well, it has helped me massively to have injections but may take a few before you get benefit. I inject both B12 and B spectrum as they all work well together.
Incidentally, if you gave up all grain for a while but had undiagnosed coeliac, you’d likely have had severe symptoms when you went back on gluten. So that also may rule it out.
Hi MikeyO, I am a 55 year old male. My symptoms have been exactly the same as yours. Just like you, various GP's at my practice have been fobbing me off for the last 30 years. I managed to get hold of a book called 'Could it Be B12' written by Sally Pacholok and Jeffrey Stuart. I strongly recommend you read this book! After I read it, I decided enough was enough. I asked my GP to allow me to have a trial of B12 injections. Not surprisingly.....I was refused! I told him I would arrange to have them done at private clinic.
I have now had 3 B12 injections( 1 per week for the last 3 weeks) and already have started to notice significant improvements. I'm not saying that everything magically happens overnight, but 3 weeks down the line the symptoms are much milder and less frequent. I intend to have another 3 weekly shots before going to 1 x monthly.
I would be interested to know how you get on with the B12 injections. Hopefully you'll begin to notice a difference.
Good luck. I'm wishing you lots of brighter and happier days ahead - because this B12 deficiency really does cast a complete darkness over your head. Take care of yourself and remain firm with these GP's who appear to be completely ignorant of what you are experiencing and how these symptoms are impacting on your life.
Mikey I'm 77 and I can relate to your life story. Don't let any doctor tell you your B12 levels are "normal" or "too high", etc. If you are supplementing in any way (even just a multivitamin) your levels will be false. Doesn't matter how much is in the blood at any given time, it's what the body is actually absorbing. And if you have PA it won't absorb much B12 with tablets if any at all. Regular injections are the only way to go. Also, don't let them put you on PPI drugs to lower stomach acid because we already have low acid. Fact.
All so familiar MikeyO. That is like reading my diary and makes me so cross to think that doctors are so flippant with peoples lives. You’re in the right place now. Hope you feel better very soon.
Absolutely, you can go without a diagnosis of b12d for decades. I went 38 years. Suffering terribly. Its always blamed on something else. Everything from MS, to fibromyalgia, to depression and eventually, as I got older, age. A life of suffering and useless meds that made things worse. A life of feeling like I was crazy. I isolated myself. I felt alone. I became reclusive and depressed. Now I'm 60 and have been alone for 23 years to protect myself. Its been a lonely, misunderstood, life.
In between the B12, battle, i have had accidents, cancers and other strange things. It's been incredibly hard but I finally have an answer, and this wonderful forum for support
I'm so sorry you had to suffer so long and without answer. Questioning yourself. It's just not right.
I never knew what the difference of the b12 test were and found this.
good luck to you MikeO. It does get better. Someone is always here to answer questions and help. No question is stupid or too weird to ask. You would be surprised at the strange symptoms PA causes.
I wish the web masters would fix the strange typing glitches in this forum. It takes forever to get something typed using my phone. Too bad B12 won't fix it.
Just want to make sure you are armed with the knowledge to receive proper treatment. Sharing my favourite links about misconceptions that exist surrounding b12 deficiency, not testing levels after treatment starts, and how there is no evidence of overdosing on b12.
Be aware that new symptoms can occur during treatment, as can the increase in prior symptoms.
This is the body waking up, sort of speak.
Between my second and third dose I had a 24 hour period where I felt like I was being tasered every twenty minutes. I had to pace around my condo, and could not function in any manner. It was that bizarre. And it all left as quickly as it came.
I am not stating this to traumatize anyone, smiling. I just think knowledge is power. If I had not been hearing on here that new symptoms *might* come - I would have felt alone in it & not understood what the heck was going on. But as I state this I do not want anyone to hesitate to get medical attention if they feel that they need to if these troubling aspects appear.
Also, I felt magnesium helped a lot during this period.
MikeyO I'm sorry that you're having to deal with the issues you mentioned and I would imagine maybe grief or anger that's coming up from wondering how long those issues were developing in your life.
I was diagnosed with PA early last winter and I turned 35 this summer. The things you mention are striking in their similarities to difficulties and insidious symptoms that creeped up on me as well.
To some degree, I feel like I was developing my symptoms from the time I was a toddler or an infant. I'm not sure if it was me having B12 deficiency issues from that age, but I think it's probably very likely that the disease progression can be years and years and not even show as B12 deficiency before unpleasant symptoms start emerging, if that makes any sense at all? I'm rooting for you, so glad you got a diagnosis and can start addressing the B12 now. Hang in there!
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