Pernicious Anaemia Society

Breathlessness

Hi everyone. I have an appointment tomorrow with General Medecine regarding my breathlessness. They seem to be ruiling out my B12 deficiency as the reason for my breathlessness, even after having breath tests, an ECG, etc. Can I ask you all out there if you experience breathlessness and if it gets better or worse depending on when you get our injections? I am on monthly injections (after alot of fighting) and although many of my symptoms have improved, my breathing is not one of them.

Thanks everyone.

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Breathlessness can be due to a lot of different things so it is the right thing to do to look into that. You are on monthly injections so it sounds as though your b12 issues are being taken seriously, you are (like myself) more fortunate than many people in regard to that.

Most people (self included) experience a kind of air hunger which is like gulping in air, not everyone gets this but it is fairly common and to me it is not quite the same as breathlessness. I also get peripheral numbness around my mouth and tongue at the same time ..... this seems to happen when my ferritin level drops below halfway down the reference range. When I take a course of iron it goes away again.

Do you have the results for ferritin and folate, these levels do affect the way your body is able to use B12.

If you have other symptoms which do not improve it may be that you will benefit from more B12 but we should not assume that it is the answer to everything.

I hope you get the answers you need. Good luck.

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Sorry forgot to say ... my air hunger/ breathlessness does not depend on when my last injection was. Does yours??

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thanks for the reply. My ferritin and folate are fine. It doesn't really matter where in the injection cycle I am. I also have "the sighs" - my poor husband never knows whether this deep sigh is due to needing air or cos I'm annoyed at him!

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Both surely !!

I am breathless , I've been self injecting for 2 months and it's got worse, my ferritin was 63 when I started , I predict it's gone down ( had bloods today) what was your last ferritin reading? It needs to be optimal , 80-90 ideally

It's very uncomfortable and I sympathise with u 🤗

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Hey, this is a late reply but I've developed breathlessness after a similar period of self injecting and wondered what your ferritin result was after the two months, how often you were injecting and if you had taken iron supplements in that time? I'm just trying to gauge how much ferritin b12 might use up before I can next get mine checked! Cheers :)

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Softpaws - your Ferritin needs to be halfway in the range to be fine. Could be time to have a Full Iron Panel done. Iron attaches to red cells in blood and oxygen attaches to the iron for transportation around the body. Low Iron = Low Oxygen = breathlessness 😊

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When I have it I swallow a lot... my husband says "you're doing it again". Yes I do know that Thankyou!

Are your ferritin and folate really okay or have you just been told "its fine" ? Doctors do that all the time. You have to fight for everything as I m sure you did for your monthly injections.

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Hi Softpaws - have just read your Profile and see you had your Thyroid tested and again you were told your levels are fine. I also read that you have Thyroid Anti-bodies - meaning you have Hashimotos - or Auto-Immune Thyroid Illness. So what Thyroid tests did they do ? - The TSH - FT4 AND the FT3 hopefully.

Like you I too have Hashimotos and the TSH - FT4 and FT3 were all in range when I was diagnosed in 2005 at 59. My GP here in Crete started me on treatment to support the thyroid whilst under attack from the anti-bodies. Also it may help to prevent the anti-bodies increasing.

If you have copies of your Thyroid results with ranges I may be able to help. Your feeling of breathlessness could be linked to Low Thyroid as well as other things. Your TSH needs to be around 2 or under and the FT4 and FT3 in the upper part of the range for you to feel well.

As you have Hashimotos I am suspecting your VitD will be low too. I have been on the Thyroid Forum here on HU for over 4 years so with almost 50,000 members I have read a great deal :-) It is often reported that giving up gluten can be helpful in reducing Thyroid Anti-bodies - I have been GF for over 3 years and anti-bodies have reduced.

There is an inexpensive book on-line written on behalf of the BMA by Dr Anthony Toft - Understanding Thyroid Disorders. He suggests treatment when Thyroid anti-bodies are present. It would be my advice to have treatment before those pesky anti-bodies create more havoc......

I am not a Medic - but you could click onto my name to read of my journey to good health ....

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I get the sighs, but more so the yawns.

I yawn & yawn!

It seems to happen when I need a b12 injection. 🐶

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Nobody is quite sure what causes the 'sighs' - think most GPs would assume it is down to anaemia but there are other ways in which B12 could lead to this which are nothing to do with anaemia - eg effects on the autonomic system - and part of the neurological effects of B12

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thank you all so much for your responses. I'm just about to go into work so will look into my bloodwork later. I will also be showing the doctor these replies later today - I'm hoping its the good one that listens! 😉

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I experience breathlessness and find it hard to walk at times, as if my legs won't work properly. This hasn't been listened to by the GP or looked into. I self-diagnosed that this was down to the B12 deficiency, but was concerned when it persisted after treatment. I began to take a gentle iron supplement and the symptoms have improved (despite ferritin being "normal"). I rarely get 'the sighs' since starting B12 treatment.

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Hi my husband has been experiencing the same symptoms as you, he is constantly out of breath. he cant even walk as he is constantly out of energy. he just started taking his B12 infection weekly but its not stooping the breathlessness. how are u coping, are you better, can you live a normal life like everyone else. what advice can you give us

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Hi zoezee.

Im sorry to say the doctors have been no help - intact I was told it could be psychological!!!

I stopped eating gluten and my symptoms improved after about 5/6 weeks. Watch out for e464 if you are eating gluten free commercial bread - that brought me back down.

I am still a little breathless at times but am much more active. I can now lay flooring and other DIY tasks if I take it slowly but the main thing is I'm able and motivated to do things.

The way we looked at it was, anything was worth a try and I was no worse off if whatever I tried didn't work.

Hope this helps.

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I'd also like to say that I'm on monthly B12 I via my doctor, but I was on this level before cutting out the gluten.

If you Google gluten intolerance there are a fair amount of symptoms which match B12 deficiency.

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@ZOEZEE yes the breathlessness and strange leg weakness has mostly cleared up but it takes time and still some days are better than others. This is after injections for over 2 years. What I have found is that I have improved gradually with many ups and downs and set backs. It's important to rest as much as possible and be as stress free as possible as your body needs time to repair and heal, don't expect instant recovery, try to walk short distances in the fresh air gradually building up the time and distance, add in gentle stretching or yoga if you can.

As a (*not medical advice*) suggestion, get iron and ferritin checked and if they are mid range to low range consider a gentle supplement like Spatone (you should not supplement iron if it is high as that can be dangerous). Make sure you are also supplementing folic acid/folate especially if it was low when tested. Add a good quality multivitamin - I find chewable or drinkable ones easier to assimilate. Maybe look at digestion as well, you could try a digestive enzyme like Bromelain. Look at diet generally if you haven't already. I don't drink alcohol or eat gluten (if you suspect gluten is an issue get properly tested first as it's a difficult diet to stick to). Cut down on sugar and caffeine.

If the breathlessness etc doesn't improve you should go back to your doctor as there are many possible causes. If injections are cut down to 3 monthly and B12 is the cause of the symptoms you will have to supplement in between, but injections are the best way to recover and to repair damage.

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Hi everyone, I have had blood taken again and although a consultant went through it all with me and told me "everythings fine" (how often do we hear that??!!) next time I go for my B12 injection I'll ask the nurse for a print of my results and will take a long hard look at them myself. They just dont seem to get that "lightbulb moment" if a level is at the low end, it could be improved upon and may actually make a difference. The doctors all seem to be blinded by the upper and lower range levels.!

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Good idea 😊 You are legally entitled to copies of your results - Data Protection Act. When you have your results post on a new post so more people see them 😊 You could also ask for copies from the Consultant in case they are not sent to your GP.

Sadly Docs are trained to look at ranges and not the patient !

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