Air Hunger: Hello again. I have some more... - Thyroid UK

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Air Hunger

islandgirl1986 profile image
41 Replies

Hello again.

I have some more questions, quite a few really. Just one for now though so as not to confuse.

If anyone has air hunger ( feeling you can't get enough air in), also palpitations that can last for days at a time can you let me know, I have a list of autoimmune conditions and a neurological condition. I have been on levo for a long time (50mcg) and can't get higher as I always feel worse. I won't say anymore, I know that I have had some replies saying others have this too. Anyone else, as don't see majority about this on here. Thankyou.

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islandgirl1986
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41 Replies
greygoose profile image
greygoose

Air-hunger is a hypo symptom. I've had it all my life and had no idea what it was. It's a bit better now, but not completely gone despite my vast improvements in most other areas.

islandgirl1986 profile image
islandgirl1986 in reply to greygoose

Thanks greygoose. I think you kindly answered this for me before. It does seem an uncommon symptom on here, tho everyone is different. I am post meno and was told that it was a symptom of menopause too. It can be very bad and have anxiety which I think was probably caused by me waking suddenly as though I had stopped breathing( s'thing thats been going on for 28 years) I do think I've had a thyroid problem for a long time. I have short periods without it ie as much as a week, but it always comes back. My husband thinks its hormones/sleep problems and wants me to ask for another sleep study (done for central sleep apnea related to herniation of the brain- which was normal). May I ask what you think has been most helpful. Thankyou

greygoose profile image
greygoose in reply to islandgirl1986

When I was a kid, I actually did stop breathing from time to time, but it didn't bother me because I thought it was normal! I've always been puffier than other people, but only notice it when people remark on it - which they do quite frequently, which I think is very rude! lol

I have been told on and off that I have asthma, but I'm not sure I have. And if I have, I Don't thik it's just that.

I went throudh a very breathless period all together during 2011/12/13 and what I've found helped a lot with that was B12. Mine was 350 when tested, which the doctor said was 'perfect', but I could hardly breath. But increasing my level has helped enourmously. I still 'sigh' though, from time to time, but at least I can climb the stairs without passing out!

And, of course, you need to get your T3 optimised... :)

islandgirl1986 profile image
islandgirl1986 in reply to greygoose

I am on B12 and quite a high level last time tested as was my vit D. I was surprised by this as I was consistently taking same amount as time test done previous. I think it was suggested by some here that T3 could be better, but I seem to get worse when I increase dose of levo. It seems a lot of things don't agree with me. Started iron last 3 weeks as suggested was low. Having a lot of extra tummy troubles since too. I think I will have to get gluten free diet right and work from there, and just hope I will get a result. Was in London y'day and felt awful, out of breath and can't control temp,so hot. Think I will ask gp if I can get tested again for celiac too.

greygoose profile image
greygoose in reply to islandgirl1986

It could be that you're not converting correctly. And that could be due to low iron. Do you take vit C with your iron? Because that helps absorbtion and minimises stomach problems. Three weeks isn't very long. It could improve with time.

islandgirl1986 profile image
islandgirl1986 in reply to greygoose

I do need to give it time and yes I am taking vit c which seems to go right through me, as most other things seem too. I'm going to continue tho and hope things improve. I don't want to go down the route of T3 yet as I would need to go private, as I was refused trial in January.

greygoose profile image
greygoose in reply to islandgirl1986

I'm sorry to hear that. It's so difficult, isn't it!

Ryanzz profile image
Ryanzz in reply to greygoose

I am hyper multinodular and have air hunger. Any help would be greatly appreciated because my drs are no help.

greygoose profile image
greygoose in reply to Ryanzz

When you say 'hyper', what does that mean, exactly? Have you been diagnosed with Grave's or Hashi's? Or do you just have a low TSH?

Air hunger is usually a hypo symptoms.

To get the best out of this forum, it's always advisable to ask your questions in a new thread, rather than tacking them onto someone else's thread, because it can very very complicated for everyone. Give all the details you can, in your new thread, all the numbers: dates and doses, results and ranges. And tell us what your diagnosis is. That way, you will get the best help possible. :)

potnoodle profile image
potnoodle

I have both.

Oddly my pulse was higher before I started NDT which confuses matters! It was impossible for the doctor to take my blood pressure due to my racing pulse. The palpitations tend to be worse at night for me.

I have a constant feeling of not being able to breathe in enough, it feels as if my nostrils are flared with the effort of trying to breathe in enough air. I do huff and puff a lot too. I had just put that down to being 4 stone overweight to be honest but maybe it's not.

greygoose profile image
greygoose in reply to potnoodle

Your nostrils could also be enflammed, thereby narrowing the airways and making it difficult to get enough air in. If you can take a deep breath more easily through your mouth than through your nose, that might be why. Mine are terribly enflammed most of the time - especialy at night.

potnoodle profile image
potnoodle in reply to greygoose

That makes sense actually and I do have hay fever which probably doesn't help.

Something else to add to the long list of annoying ailments, oh joy!

greygoose profile image
greygoose in reply to potnoodle

Isn't it just! Aren't we Lucky!!!

potnoodle profile image
potnoodle in reply to greygoose

But my doctor told me I just have health anxiety as all my bloods are within range so it's all OK really!lol

islandgirl1986 profile image
islandgirl1986 in reply to potnoodle

Me too

greygoose profile image
greygoose in reply to potnoodle

What a moron! Does he not know that it's 'normal' to be anxious about your health when you're ill? They're the ones always going on about 'normal' but they Don't even know what it means!

potnoodle profile image
potnoodle in reply to greygoose

If it's not within normal range it's still normal if it's not too far out of normal range too.lol

True words spoken by my knowledgeable GP. I should take antidepressants apparently.

greygoose profile image
greygoose in reply to potnoodle

Of course you should! Shouldn't we all? Big Pharma just won't make enough money if we Don't!

islandgirl1986 profile image
islandgirl1986 in reply to greygoose

Worth pursuing too. Thankyou. Did you get PM, not sure I did it right.

greygoose profile image
greygoose in reply to islandgirl1986

No, it didn't arrive. What did you do? lol

islandgirl1986 profile image
islandgirl1986 in reply to greygoose

I don't know,sorry. I read it with interest tho and will try what you said

Clutter profile image
Clutter in reply to potnoodle

Potnoodle, try pursing your lips when you draw air in. I can't remember where I read about it but it works for me. Seems to draw the air in deeper.

potnoodle profile image
potnoodle in reply to Clutter

I will try that thank you. Maybe in front of a mirror at first in case I look like I'm pouting!lol

Clutter profile image
Clutter in reply to potnoodle

Potnoodle, it's not a particularly good look but it gets air in :-D

bobsmydog profile image
bobsmydog

I had air hunger (but no palpitations) when I was first put on to Levothyrine. This went when they raised the dose from 25 to 50mcg.

islandgirl1986 profile image
islandgirl1986 in reply to bobsmydog

Heard that from others too. Unfortunately I had it before I took any med and still have it. Thankyou

Clutter profile image
Clutter

Islandgirl, I read a recommendation that pursing your lips to draw in air helps with air hunger. It worked quite well for me, felt as if the air was drawn in deeper.

Levothyroxine only caused me dreadful palpitations and other adverse effects but adding Liothyronine (T3) calmed the adverse effects.

islandgirl1986 profile image
islandgirl1986 in reply to Clutter

Going to try that. I had the palps before the levo, but I may need to try t3 at some point. Thanks

humanbean profile image
humanbean

Low iron is often combined with low haemoglobin, haematocrit and red blood cell count. Good levels of these things are needed in order to move oxygen around the body.

When I improved my iron all the other things I mentioned improved too. My breathlessness is much less of a problem now than it used to be.

One of the problems I have is that being so breathless for so long caused my breathing pattern to change semi-permanently. When I was younger I used to be completely unconscious of my breathing. But now I find it hard to ignore and I think it makes things worse. I've had to learn breathing exercises to try and force my breathing into a normal pattern.

islandgirl1986 profile image
islandgirl1986 in reply to humanbean

I agree. I notice the slightest change and am always wary, can't be helping matters, but hopefully if I keep taking the iron will improve things, without me having to consider T3. I have even been tested for hyperventilating which was minimal.

greygoose profile image
greygoose in reply to islandgirl1986

I have the opposite problem. I forget all about it, and when I do become aware of my breathing, it's very, very shallow. Don't know how I manage to get enough oxygen! I suppose that's why I keep 'sighing'.

islandgirl1986 profile image
islandgirl1986 in reply to greygoose

You could get a test done for hyperventilation if you think it would be worth it, I don't know how bad you feel about it. for me it is the worst symptom along with the palps and anxiety.

islandgirl1986 profile image
islandgirl1986

Thanks for all replies,have to go offline to look after dog with disability, but back with more questions later. Thanks everyone.

BeansMummy profile image
BeansMummy

I think I have air hunger - when I read the symptoms of it, I tick all of them. I also have palpitations most of the time - I have seen a cardiologist and have been assured that, although they are unpleasant, they won't cause me any problems. I guess they are symptoms I am trying to learn to live with :(

SlowDragon profile image
SlowDragonAdministrator

If your GP offers you propranolol (beta-blocker) - you might find it helps. I was completely unable to function on 100mcg dose of Levo. Terrible anxiety, palpitations, zero energy, cold, dry skin, unable to walk more than 5 mins etc etc.

It was tricky to start, as I had very low BP and beta-blockers also lower BP. But actually mine improved as I was able to slowly up the Levo.

Yes I know propranolol is supposed to slow conversion of Levo, and that they usually give it to hyper people. But all I know is that it works for me!

On propranolol I can tolerate 125mcg Levo

Deans_Pie profile image
Deans_Pie

I've had it for nearly seven days so far, but I think I've had it on, and off all my life. I have severe sleep apnea, I got it when I was about one-two years out, and now I'm nearly seventeen, but I don't know if that's helping it, or not. I've been to two doctors, and the hospital around My area. My mom, and some of the doctors tell me to either take a deep breath through my nose, and told, then out the mouth (about 10 times) or breathe through a paper bag.

islandgirl1986 profile image
islandgirl1986 in reply to Deans_Pie

Hi deans-pie. Sorry to hear that you suffer from sleep apnoea. If you think you may have a thyroid problem you do need to see a good doctor. Hope you get some help.

Legion profile image
Legion

Sorry, I'm rather late to this discussion, but it really struck a chord when I read it. One of the first serious symptoms I went to my GP with was air hunger. At the time, I also had a very high heart rate and palpitations. This was six months before I ever had any thyroid meds (but - as I found out recently - years after my thyroid had started playing up, but been ignored by my GP practice). A few months after starting on T4, my symptoms (including air hunger, palpitations and night sweats) began to improve. However, 7-8 months after starting T4, my heart rate was now very low instead of high, and the air hunger was much worse again. I changed brands of T4 and changed my dose, and my heart rate normalised and I felt ok-ish for the next 5 months, although the air hunger would not go away. Then over the next 4 months I began to deteriorate enormously, with all the pains, exhaustion, and air hunger coming back to hit me full whack.

It was then that I got my latest thyroid tests along with adrenal saliva tests for the first time. I discovered I had very high reverse T3 and exceptionally low cortisol and DHEA. I stopped the T4 and am now on T3 only. It's early days yet, but I feel so much better than I did just a month ago. The constant tiredness and pain has greatly reduced, and now it seems like the air hunger is improving too. I'm now starting to wonder whether it actually had a lot to do with my fatigued adrenals? My B12 was very low originally, and my Vit was low 'in range' and ferritin also below optimal. I'd got all these improved and yet still I was suffering and getting worse whilst on T4. Only switching to T3 (following Paul Robinson's CT3M protocol) has begun to make a difference. My body temp is still low, but is showing some signs of improvement, and I am so much less tired than I had been both before and during my time on T4.

So, if you're still struggling, I would say have a close look at your adrenals (assuming you've got your B12, Vit D and iron in a good place). Hope you are doing well.

Legion profile image
Legion

I thought I'd type a quick update for fellow breathlessness-ers. T3/CT3M worked! The breathlessness went away completely. :-) I can't say categorically whether it was low T3/high rT3 or fatigued adrenals that was causing the breathlessness but it was the T3 that fixed it. I know this now for certain because I stopped taking T3 about three months ago, and my adrenals are exhausted again. Guess what has gradually reared its ugly head once more? :-( So much so that I'm breathless/sighing just sitting still this evening. Has anyone else managed to resolve their breathing issues?

Baister profile image
Baister in reply to Legion

Hi, did you go back to the T3 and get rid of the air hunger again? X

Rhannii7 profile image
Rhannii7

hey there , did you ever sort out the air hunger thing ? I trialed t3 only for a week and the air hunger, pounding heart and anxiety was so bad i had to stop and go back on ndt, the issues has stopped now im back on ndt

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