The sighs: How long will it take for... - Pernicious Anaemi...

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The sighs

Tiggers321 profile image
24 Replies

How long will it take for the “sighs” to stop! I have been taking b12 supplements for 50 days with only minimal recovery from breathlessness, waking breathless and fatigue and weakness!

I sigh constantly every 3-5 mins all waking hours with some breathlessness and chest feels fizzy! Worse with physical but also remains at rest.

I need some reassurance please

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Tiggers321 profile image
Tiggers321
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24 Replies
Nackapan profile image
Nackapan

Have you had bloods done to see if your folate, ferritin iron and vit d, thyroid okay?

Have your other symptoms improved with b12 supplements ?

Narwhal10 profile image
Narwhal10 in reply to Nackapan

Hi Tiggers321

I am so sorry to hear that you are poorly. Yes as Nackapan says about other bloods. Breathlessness is quite horrible. It’s been nearly 3 months, so maybe consider ringing GP. X

Tiggers321 profile image
Tiggers321 in reply to Narwhal10

I will be in touch again! Very frustrating! I am slightly better than 2 months ago but still no where near normal.

Tiggers321 profile image
Tiggers321 in reply to Nackapan

All other bloods were fine just low b12, yes some symptoms are better but the sighs remain the most troublesome!

Ryaan profile image
Ryaan in reply to Tiggers321

I used to trust my Gp to read my blood results until my shortness of breath didn’t go and I decided to get a copy of my blood results myself.

Turned out my Vit D and Iron levels were on the low side and Gp said they were fine.

This can also happen with low Folate.

Tiggers321 profile image
Tiggers321 in reply to Ryaan

Thanks for the heads up I have a new go and having a new set off bloods on Friday so hopefully I will get some answers

Seth12345 profile image
Seth12345

Get your cortisol checked as well

Emmers5 profile image
Emmers5

Supplements? If you have PA you will require injections. My sighs continued for a couple of years as I was under treated for that long.

fbirder profile image
fbirder

As Emmers5 says, they will never go if you're not getting the right treatment.

The sighs were one of the first things to disappear once I started injections.

Tiggers321 profile image
Tiggers321 in reply to fbirder

Can you discribe your sighs! I feel the symptom is so overwhelming and make me very anxious and at the front of my mind every day!

fbirder profile image
fbirder in reply to Tiggers321

Whenever I would sit down, move in my chair, get into the car, almost anything - I would take in a breath and then let out a long pheeeeew. And I didn't know I was doing it.

When first diagnosed I was reading a list of symptoms to my friends when I came to their description of 'the sighs'. They both exclaimed "You, do that. And it's so annoying".

MariLiz profile image
MariLiz

It does sound as though you might need injections rather than just supplements.

Injections sorted that symptom for me, but it still took a few months.

If you are taking supplements because you are vegetarian or vegan, perhaps it will just take longer to correct your lack of B12. If it’s Pernicious Anaemia or another gastric failure to absorb, then injections will be needed.

Tiggers321 profile image
Tiggers321

Thanks all, so reassuring that it takes time! I don’t have P.A. but very low B12 at 89! My doctors don’t offer injections (Gloucestershire) only supplements! Using a spray As well as oral tablets twice a day!

wedgewood profile image
wedgewood in reply to Tiggers321

How do you know that you don’t have P.A. ? If you have tested negative for the Intrinsic Factor Antibody, about 50 % of P.A. patients test negative.

LittleA profile image
LittleA

You will need more tests to find out why you still have symptoms. Some of them will never go away because you will need treatment to stop your B12 getting low.

Before I was diagnosed with PA my doctors stopped my injections and my B12 plummeted so I needed the loading doses of again.

If you have PA and/ or low b12 you will constantly need B12. You will need injections and for life. Doctors are for some reason are telling people they don’t need injections and giving pills instead which does not work because the body can’t absorb the pills to get the b12 into the body. It sounds like you can’t absorb the tablets that’s why your feeling the symptoms you have.

I would say if your current doctors can’t or won’t give you injections or the proper treatment for low b12 change GPS or make a complaint through your practice manager.

Your best option is also get referred to a haematologist to find out why your so low.

Have you had your vitamin D and folate checked?

Having low Vitamin D can cause lots of similar symptoms to B12 deficiency too and make things worse.

Hope you get answers about your low B12, it’s distressing when you can’t get the right treatment

Tiggers321 profile image
Tiggers321 in reply to LittleA

Just a little update! I have a new GP and just had a new set of bloods taken! She has promised injections if the levels are still low! I am assuming they are as I still have symptoms although they are a little better than 1 month ago! Still my breathing is a long way off “normal” and everyday breath feels a struggle! The anxiety is much better now I have a doctor that seems to be listening (she did mention anxiety but told me “we will rule everything else out first” ) I have had an ECG and full set of observations which were all normal apart from a fast heart rate at 115 ish

Cherylclaire profile image
CherylclaireForum Support

"Air hunger" is something that seems to me to be purely a B12 deficiency symptom- or at least I haven't heard it mentioned in connection with anything else. Which makes the blank looks when mentioning this to a medical professional a bit surprising.

I nearly got somewhere with this when a neurologist suddenly had a eureka moment and out of the blue asked me "Do you yawn a lot ?" I laughed in relief, and nodded. Somehow, we got sidetracked and I never found out why he'd asked that ! Damn !

Sorry.

I got loud overlapping intakes of breath (bit like a noisy goldfish) - initially quite often. I told GP and she thought it was anxiety- "What, when sitting in my mum's house or queueing at the supermarket ?" I asked, confused- so obviously not that. Mainly happened when indoors, especially when difficult to get fresh air: the tube, a car journey, meetings at work, consultants' waiting rooms all spring to mind - but also sometimes even on waking !

It still happens to me now, 4 years after B12 deficiency was found and treatment started, but never as frequent or severe.

Mind you, since lockdown, I have been ordering shopping online, haven't been on the tube or at work and have not had any more hospital appointments !

We really are all different, but yes, this is a fairly common B12 deficiency symptom - although you might struggle to find a GP who can recognise it as such.

It is still worth getting a copy of blood results: I found both my folate and ferritin to be low (but within range) -and got 3 months' treatment, which seemed to alleviate some of my other symptoms. It took a couple of years to get these to a more ideal level and stabilise there, though. Also vitamin D (found out I had osteoporosis of the spine) and thyroid, which might be struggling at this point - for which you may need a more comprehensive test than the one available on NHS.

Tiggers321 profile image
Tiggers321

Yes I also yawn a lot! But my sighing is constant and has been since the day it started in April! My doctor also said anxiety but sighing Causes me great anxiety and I have developed a panic disorder due to not knowing why i was sighing!! And not getting a blood test for 4months made the anxiety worse and I became mentally very unwell! It’s been the worse 6 months of my life x

Cherylclaire profile image
CherylclaireForum Support in reply to Tiggers321

Strangely, despite often being really tired, I've never yawned (ordinary yawning, I mean) once since B12 deficiency started.

This noisy gasping air-hunger seems to have replaced it.

Rshpreet profile image
Rshpreet in reply to Tiggers321

Hi Tiggers, did your breathlessness improve? i have the same issue.

Emmers5 profile image
Emmers5

Air hunger - I yawned a lot, I involuntarily gasped when yawning, and then would gasp on top of that, my family told me that I sounded like a suffocating moose all the time, a sports bra made it tons worse, felt like I would pass out, breathing just never felt refreshing at all. I now treasure every deep breath and every moment that I feel truly like I have enough air.

Anxiety - My anxiety and depression were relieved when I finally was able to have injections at the proper frequency. I had thought I was well and didn't realize it was b12 related. I could easily have ended up on anti depressants or anti anxiety medication. Thank goodness for this forum. I owe them a lot.

Tiggers321 profile image
Tiggers321 in reply to Emmers5

I am taking antidepressants and used Valium for a short time to help with panic attacks! I would wake at night gasping for air and feel so anxious! The anxiety is now under control I don’t have panic attacks now but still feel uneasy and hopeless that I can’t get enough air! I am so glad you feel better! What an terrible symptom to live with! X

Retteacher profile image
Retteacher

Sorry to hear that you are suffering with air hunger. My breathlessness started after doctors mistakenly reduced my Thyroxine medication about 15 months ago. I am just back to my normal Thyroxine levels and self inject with B12 on alternate days. My breathlessness has improved but is often one of the last symptoms to disappear. One thing that may help is to try and breathe through your nose and not your mouth. Surprisingly you get 20% more oxygen if you do that and I find it helps. Take care.

Tiggers321 profile image
Tiggers321 in reply to Retteacher

Yes Thankyou I have been nose breathing for months now. I think patience is the key to this symptoms recovery. Glad your better x

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