Does anyone else suffer with breathlessness even though their bloods are 'within the range' as every doctor I have spoken to tells me. I have not met a doctor yet who does not take into account what is normal within that range for me.

I am always breathless on exertion, if b12 is around 1000 sleepiness returns, below 1000 start shaking and so it goes on. I don't have to wait till the range says I am officially anaemic till symptoms return. But it is the breathlessness that frightens me. Thanks

8 Replies

  • YES! I most certainly do, am at the moment, not due for injection for another three weeks according to nhs guidelines! Very shallow breathing too!

  • The breathlessness may not be entirely down to anaemia. B12 affects the nerves and that includes the autonomic system which controls all those things that we do subconsciously and semi-consciously - so signals don't get through the brain properly.

    The 'sighs' are another common symptom and they aren't confined to people with anaemia.

  • I did until I started self-injecting B12, and also an iron supplement to raise my levels above the bottom of the 'normal' range.

  • I still have significant breathlessness even with super high levels. My Dr says it couldn't possibly have anything to do with B12 deficiency as I'm not deficient. :)

    I was sent for a stress echocardiogram and a special lung CT both of which showed up with no problems. I can exercise ok, and find my heart rate does what is expected but walking (particularly up any sort of incline) leaves me huffing way more than anyone around me...

    I wonder when all these DR's will get together and compare notes. I'm sick of being told it's all in my head.

  • Yeah I get breathless and the sighs. Was very ill until started self injecting weekly. I was told it wasn't b12d as my bld results show no deficiency (>900 whatever units). He blamed my weight. I should exercise more....i had chronic fatigue, fibromy. and chest pains. All the symptoms of b12d. .ringing in the ear, numbness very sore tongue, could hardly walk....symptoms are much reduced after 3mths. But you need to take folate, iron and a good multivitamin . Press for a comprehensive blood work. Find out your vit d level, calcium, magnesium and potassium . Switch to Mediterranean type diet. You have to take control of your health cos nhs is failing b12d patients at the moment. But we have to get well in order to have the strength to fight for change.

    All the best.

    ps. diagnosed pa 11years ago. I was like a zombie for many years on 4 sometimes 2 injections a year on nhs!!

  • I had spells of breathlessness(mainly not being able to catch a deep breath) just after I was diagnosed with PA. This weird feeling would come over me and I would have to concentrate on my breathing til it passed. Went to doc because it scared me. She did all sorts of breathing tests/ blood oxygen tests. All seemed fine. She prescribed Montelucast(opens the airways). It stopped them immediately. These episodes stopped eventually(as I went on and off the Montelucast) but were very scary. My doctor never picked up the association of it possibly being B12d related. Nor did I. I put it down to allergies. I haven't had this symptom back since I have been on B12. Good luck!

  • Hi Morgan45,

    Breathlessness can be down to low or being deficient in iron.

    (Not saying your breathlessness is the same though.)

    Low iron = low oxygen = breathlessness.

    Hubby had breathlessness, we bought an online home finger prick iron blood panel test which came back as his iron was 'under range' and was high lighted in red ink.

    Being low 'within range', (bottom of range) might cause breathlessness too.

  • Gosh! I have just found this site this week....Thank God! YES to the breathlessness!

    I complained to my old GP last year that I was waking up gasping for air and had to really talk myself to breathing properly. He said it was panic attacks and at the time I thought it could be, despite never had them before and having worked as a complementary therapist before using techniques to help others who suffered. the last three weeks, it has returned with avengence!

    I have been bed bound for almost two years now so there is no way my shortness of breath is linked to any over exertion.

    It has been very scary as it's just another part of my body giving up or stopping working...alongside my legs, hands, stomach, back, eyes, brain, bladder and bowel etc.

    I have been left untreated for 13 years and only recently had a burst of four loading doses, then three weeks later two more injections.

    My MCH was high and in August I had an overnight Oximeter which revealed my oxygen levels drop at night.

    As a result of this I had a sleep study done but the results are not yet through.

    I know my oxygen levels were low as I saw the readings and on one occasion they dropped to 88%.

    I went for an urgent appointment last week to my local surgery but couldn't see my own doctor...just someone very rude about my being in a wheelchair and arguing about my blood tests being fine when he had the wrong results in front of him.

    He said that because I could talk, I could breathe so I was OK.

    I told him that when my son was having trouble breathing in hospital, with spinal cord injury, he too could speak OK but the neurologist came to tell us both to prepare for intensive care as the feeling he had, just like me, of a tight constrictive band around his middle was a sign his breathing could worsen.

    Although my son had a different illness, it was still due to spinal cord issues which can affect breathing.

    No peak flow test or Oximeter test...all guess work.

    I told him I wouldn't waste his time any longer.

    Thankfully after a few more days it has passed but I know it will return.

    The only thing keeping me going is knowing that this Monday I am seeing a nice neurologist, whom I met briefly in hospital in August.

    I pray that he will help me, as my life revolves around laying day and night in a darkened room, doctors and hospital visits.


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