Since March I have felt out of breath. I thought it was covid, then thought it was anxiety, then finally went for a blood test which revealed while all my other levels were normal I had undectectable b12 levels. The main symptom is feeling out of breath, like I have to yawn all the time and can't catch my breath, its incredibly frustrating. I had my 5th loading dose on Thursday and felt almost normal the next day and was thrilled, then had my 6th loading dose today and have felt dreadful since, really out of breath, worse than its been in maybe a week, just lying in bed feeling depressed and constantly yawning...
I guess I'm just looking for reassurance that this won't last forever and that I'm not alone with the breathlessness and feeling worse after injections...I'm getting a blood test tomorrow to see if I need more loading doses/how often I will need injections.
Thank you xx
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katamarang
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Please don’t worry . We hear so often that having the B12 deficiency / Pernicious Anaemia treatment will make you feel somewhat worse before it gets better . We think it’s part of the healing process .
I’m surprised that you only report breathlessness as a symptom . You usually get more than breathlessness ! So hang on in there , and let us know when you feel better . Very best wishes .
P.S. Has your doctor found out mahatma caused you very low B12 level ?
Thank you. He suspects perncious anaemia but I haven't been tested for the intrinsic factor. I also have mouth soreness (have had mouth ulcers since I was a teenager but got them under control after I gave up tomatoes..now I'm wondering if it was b12 related all along), and tiredness and occasionally tingly fingers and occasional brain fog. I know ive got off lucky compared to some people, the breathlessness is just so frustrating, makes me want to cry! But very reassuring to know there are people who feel worse before they feel better, thank you xx
Well , Pernicious Anaemia is the most common cause of B12 deficiency .And if you eat meat , fish ,eggs and dairy products , it is the most likely cause . But that test for the intrinsic factor cannot be relied upon . About 50% of PA patients get a negative result . So remember that .
Taking certain medications can deplete B12 , e.g Proton pump inhibitors like Omeprazole , Metformin for diabetes and the contraceptive pill .
Also quite rarely , fish tapeworm , found in uncooked fish ( or even in inadequately smoked salmon ! )
that's really interesting, I am on the pill, ill talk to my dr about it. I dont eat meat but get plenty of dairy plus take supplements so I'm convinced its perncipus anaemia
HI there I was reading your posts and I have been having B12 issues also and my Ferrating was only a 6...What get me is the mouth pain I can't stand it any more I switched to watermelon flavored tooth paste because anything minty sets my mouth on fire...Have you found anything that helps the burning ?
I feel your pain! The only thing that works for me is avoiding certain foods, tomatoes, strawberries, coffee, chocolate, crisps all make my mouth much worse (especially tomatoes).
hi i have been getting injections every 3 month for a year and a half i will need them for the rest of my life my worst symptom now is breathlessnessi used to have vertigo but it only happens now and again but i had to give up full time work as i couldn't handle it because of th lack of breath butit is the worst symptom i have now i do wish you well for the future
I think that you need more regular injections of B12 .Your doctor can give you an injection every 2 months according to the guidelines issued last year . Do try try for that , and also take a daily 400 mcg folic acid tablet . It acts together with B12 . If you fail to get more regular injections , consider self-injecting . Best wishes
As Wedgewood said, so very many say they get worse before getting better.
I didn't notice any difference at all after the loading doses. Then, if I remember right, I think it was 2 days after the second 3 monthly injection, I felt loads better, but for only 2 days then straight back to day one. Same with the third. That's when I started to self inject every other day. I still get very fatigued when I over do things. (I'm my own worst enemy!) I know I need to pace myself better. But overall, apart from the small fibre neuropathy in my feet which is loads better than it was, I've never felt better.
It is a long haul, at times very disheartening also, as it always seems like one step forward two back, but it can get better.
I was told to keep a diary & it was really good advice.
It was only when I went for one of my 3 monthly injections & told the nurse I was still suffering with my feet tingling & burning & pins & needles in my fingers. Also the gasping for air suddenly while resting.
She said I should still be getting every other day injections if I was struggling with neurological symptoms. She had a word with my GP who wouldn't increase the 3 monthly injections, but referred me to see a neurologist.
It was at that same visit that I told the nurse I could get the ampoules from Germany & was seriously thinking about self injecting after reading posts on here. She showed me how to inject & said so many have to due to the daft guidelines in the UK.
After around 6 months of self injecting every other day, my feet got worse. The tingling & burning which I was coping with, turned very painful, almost like walking on broken glass & having pebbles in my shoes.
A year later they're so much better. Still painful at times, but with better footwear & still looking for the ultimate comfort fitting, it is much better than it was.
I was very lucky to find a good neurologist who said to carry on self injecting, & hopefully in time, the injections may start to heal the nerve damage. She was right.
Many neurologists believe too much B12 is toxic! I found a good one who was fully educated around B12 deficiency.
thank you for this. I am seriously thinking about self injecting until mu symptoms go away cause I don't want to go to every 3 months when I still feel rubbish
I just replied to your earlier post and then saw this. Please remember that b12 blood test is not accurate once you have started treatment. Also many posts by the smart folks on this site about how long to have loading doses. If your b12 was that low, then you could have neurological symptoms and loading doses need to continue until those symptoms no longer improve. Check lists of neuro symptoms asap. Many postings with medical info regarding that on this site. Breathlessness gets better and worse before resolving, don't despair.
thank you for this. I felt so much better friday then back to out of breath on Saturday. Its particularly bad today since I got my 6th injection. I might ask for more loading doses and if they say no I will seriously consider self injecting. My GP said he was happy to be flexible though...fingers crossed
As others have said, with neurological symptoms (which include brain fog and tingling) the UK guidelines (BNF Guidelines 9.1.2 ) state that you should have injections '1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months' - many medics seem not to know this, so do make sure that your GP does - great that he is happy to be flexible! I had this breathlessness, yawning etc, it was horrible, but did get steadily better with regular injections and other vitamins and minerals. I hope you keep seeing improvements
I am 20 years old and when I first was diagnosed one of my main symptoms was breathlessness. I yawned all the time. Now after 6 months I can run 1-2 miles without any problem. Hang in there it will get better.
I remember feeling nothing at all from loading injections. I mean by that, that I couldn't feel any sensation, so never knew if the nurse had even started or whether she'd finished: had to ask.
It took 9 months to feel the injections. This was because I was finally improving -given reloading injections, after becoming worse when having 1 injection every 3 months. More tests were done - including MMA, which was still raised. This gave me a diagnosis from GP of functional B12 deficiency, confirmed by the laboratory. I was reloaded at 2 injections a week for 6 months. It seemed that frequent injections were needed to help control my symptoms. In the end, for me, this meant self injection, but this is not necessary for everyone though. My cousin gets an NHS injection every 6 weeks and is doing well on that regime.
My strange loud overlapping yawns, although familiar to friends and family and ignored, were a source of amusement, especially in supermarket checkout queues, but not in an unfriendly way: I think they thought I had Tourette's and it was a tic ! I'd just smile back and shrug- couldn't speak !
This happened all the time and now is something that rarely affects me, and so mild I'm not bothered by it. This is also true of other symptoms (although not all).
MMA was tested 6 times in all; finally last year, it was within range for the first time in at least 3 years. Yay !
Can't run at all - but that's because I have back problems now. Impact jars my spine.
I can walk and walk and walk, though.... and that'll do. Never been keen on jogging but did love a good run- made me happy.
my experience is that it is normal to feel worse before you feel better as your body uptakes the B12. So stick with the injections and try not to panic. I experience that feeling of air hungar and found relaxation tapes, soothing baths, massage oils at bedtime helped a little - anything to pamper and calm the body. I was so concerned i went for heart tests and everything was normal. Once you are on injections a blood test is pretty useless as it will show high levels in your blood. You need to be treated until all your symptoms are gone, irrespective of what level a blood test shows. x. J
I was feeling very like you, worried I had covid, because of the yawning, and gasping. Eventually rung GP, new because we have moved. She said get a covid test and if that's negative come for blood tests. I asked for B12 test as I had low levels before, but told I was in the normal range. She rang back to say your B12 levels are low. She hadn't heard of my description of breathing problems which is just as you and others describe. I have had iron deficiency anaemia and the breathlessness with that was v different. I have had a week of loading doses. Breathing comes and goes, but numbness and tingling in feet feels as if I have a clamp on it, and worse than usual, so I was looking for does it get worse before it gets better. I hope yours improved.Dr waiting for results of antibody tests before deciding future treatment, but it is a relief to have a GP who at least seems to know something about it.
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