So I'm looking for some thoughts from the geniuses here. You all always astound me with your information! At the time of diagnosis 5 years ago I was profoundly ill, almost every symptom I've ever heard of. Before I was diagnosed I was on vacation with my family at high altitude. Felt like I was going to die from altitude sickness the whole time, just couldn't get my breath. Upon returning home, symptoms improved a bit but I then realized I'd felt like that for years. Diagnosed and then under treated, the breathlessness would return horribly before each injection and then improve after injection. Now I have been SI every 5 days for the past year and the breathlessness had improved but not totally resolved. The way I describe it was like I could breathe normally, no wheezing or coughing, but it felt like the air had no oxygen. I would take maybe 15-20 breaths, no relief, then a yawn with a gasp would happen and I'd feel relief. Gasps, hiccups, yawns all day. Very noticeable to people around me. This would happen throughout the day, at rest or active no difference. A few weeks ago, my dr. increased my thyroid medication (I'm hypothyroid) and the breathlessness has improved incredibly. Thyroid level has been carefully watched for decades, no indication that dosage needed to be changed before a few weeks ago. Is it possible that both PA and hypo thyroid cause the exact same symptom and that the conditions were trading off? What is going on? I felt really stupid following through with the cardiologist and pulmonologist that my dr. referred me to since I was clearly improving, but I figured worth checking everything out. They found no issues of concern.
Sorry for the length of the post, this air hunger has been going on for so long and has been so scary at times and just embarrassing at other times and has been a constant focus/distraction for years.
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Emmers5
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Get your ferritin checked, if your serum iron level is normal you can still be iron deficient so ferritin is important. I was having this 'air hunger' with a lot of other awful symptoms with a ferritin level of 20 I now supplement with iron.I was taking 10-15mg iron before but it obviously wasn't enough.
When you have your b12 injection , it increases haemoglobin so the shortness of breath etc would obviously improve. You need iron for your haemoglobin levels to improve so its worth seeing what your ferritin level is, check this article out
Yes - this is familiar, and has never entirely left me, even after six years of frequent b12 injections.
Mostly under control now, but can find that a car journey, a supermarket shop (or both) can bring it on but certainly not always. At my worst, any tube/bus journey, any waiting-room or library etc would start me off. Airless, just as you described.
Not "sighs" exactly - as that implies exhaling. This is noisy inhaling - loud enough to turn heads in a supermarket checkout queue. It is no longer predictable - often these days I can get round a supermarket with no air-hunger symptoms at all. I cannot find a relationship either to injections - I self-inject every four days.
No pattern - and believe me, I have monitored symptoms for years looking for one.
Do not ever feel stupid about getting your heart checked.
I was getting increasing heart thumps, during the day, waking me at night. A 24hr heart monitor recorded 4,000 episodes of ventricular ectopics - electric signals which apparently are harmless, although disturbing, start for no known reason and stop in the same way. A mystery. I refused the offered treatment and waited - after a month or so, they went away.
Nothing to do with the air-hunger, but worth the peace of mind. Both my parents died from heart conditions.
thank you for your replies. I will look into the ferritin. Dr did prescribe vit D at that visit and I’ve been taking it. Maybe that is what helped? I’m so happy to be feeling better but really want to know what was going on. So afraid of it returning it is such a horrible feeling. At my worst before diagnosis I thought I would die suffocating from being hugged. Not joking, really believed that. Thought people must die from hugs all the time
I have recently seen a breathing physio after experiencing similar issues for more than 10 years. She explained that I may have got into a habit of breathing too often when my B12 was low, which I have then carried on even though my levels are better now. She is retraining me to breathe at a good rate. Very helpful. You might be able to access someone via the NHS but here are her details in case you need them: thebreathingpt.co.uk/
Scientist, not medic, and only thinking of my personal experience here.
I note that no-one seems to have mentioned using a pulse oximeter [no, I don't sell these!] but they can be useful at times. Inexpensive, easy to use, but they don't completely correlate with arterial blood gas sample analysis. However, they can be useful, and a low reading followed by a bit of hyperventilating can reflect an increase in oxygenation.
Just a thought. I'm sure there will be folks on here who have far more experience of these than I do.
could breathlessness be caused ( or aggravated ) by something else…I have had it for nearly 3 years with Long Covid…nothing shows on X-rays, also tested for sleep apnoea as had low blood oxygen levels 2plus years ago ( using oximeter as suggested by FlipperTD)…only mild? Sends my BP and HR up.
I too suffer from chronic shortness of breath/air hunger that I believe is caused by my B12 deficiency. I have had all sorts of pulmonary function tests done and have been seen by my cardiologist. Iron studies are normal. Thyroid test is normal. I have been waiting to see if anyone else on here experiences this. I just started my loading doses a week ago so I guess I will find out.
I hope your loading doses are giving you relief from all of your symptoms. Keep in mind that it does take time. This is a wonderful place for information and support.
For me the way it worked is I started being short of breath 2.5 years ago. I was open water swimming 1/2 mile most days and 1 mile on some before I had difficulty breathing. Terrifying.
I find now that randomly I get short of breath. I noticed it was more likely if I was with someone. I call it my I am afraid that I am going to be out of breath syndrome. Pretty much fear of not being able to breathe causes me not to be able to breathe. It seems to be on the wane and I try as best I can to give my implicit self new experiences when I think I am going to not be able to breathe. I think the retraining your breathing is a brilliant idea.
I also have my I am afraid I am going to be fatigued syndrome.
I went for a 5 mile walk and had a kick about on the way today. I am 67 and recovering from B12 deficiency.
thank you for the thoughtful responses! I love having different opinions and ideas to look into, so helpful. I’ve used my son’s oximeter over the years (he hikes at high altitude often) and even at my most extreme distress it has never shown a low reading. The pulmonologist did suggest that I may have bad breathing habits from years of low b12 and compensating for that. After treatment I did need to relearn how to walk and even how to swallow properly so maybe the same with breathing? I am perplexed about the rapid improvement after increased dosage for thyroid and vitamin D. No reason why that should help when I have had breathing trouble at time that the dosage was fine? Will be having a sleep study next month as they want to test for apnea. Yes I know I’m overweight but actually seeing “obese” written on my chart stung a bit.
It’s a very common symptom of low Iron, it could also happen with low Folate levels.
It’s usually Low B12, Iron or Folate that you get this shortness of breath with as your body lacks oxygen and these 3 work together to carry oxygen around the body.
Your body recognises the reduced oxygen carrying capacity of your blood with PA, but misdiagnoses it as you not taking enough air into your lungs, and so tries to ramp this up, with rapid breathing and the psychological perception of air hunger.
You can counter this, to an extent, by breathing slowly and deeply. And given that we don’t use all our lung capacity as fully as we might, yoga breathing exercises may be very helpful. Or full-blown yoga anyway, if convenient for you.
Thank you for the responses and suggestions. I have not had iron tested recently. Just had follow up labs done today and showed that my vit D is now 36.5 (normal range 30-100) after 6 weeks of 50,000 iu per week, so it has improved. My TSH is lower but still above normal range so I expect dr. will increase levothyroxine dosage (thyroid disease, not PA). My air hunger has continued to improve. I now have maybe 5 incidents per day that resolve after 2-3 breaths. Two months ago I was having 30-50 incidents per day that took 15-20 breaths to resolve, lots of gasping and embarrassing random hiccups. Will try the yoga breathing exercises as that sounds healthy and calming regardless. I don't think this issue has been from disrupted breathing habits or psychological perception because it has improved so quickly without training etc. It really feels like a chemical issue - B12 or thyroid or vitamin D or something similar.
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