Breathing problems : I am very worried and don't... - Thyroid UK

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Breathing problems

linda0944 profile image
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I am very worried and don't want to go to the doctors as I feel they don't listen. Just lately I have been very breathless am not a smoker a little over weight I keep waken up at night with breathing really heavy. I also feel as if my whole body is pulsating. Could this be my thyroid don't know what to do. I am 100 levothyroxine.

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linda0944
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rosetrees profile image
rosetrees

If it's happening at night, have you wondered if it might be sleep apnoea? I think it's quite common in hypothyroid people.

linda0944 profile image
linda0944 in reply torosetrees

I don't know but my brother suffers from that but I feel it through the day as well. Thanks for your reply

marram profile image
marram

I had horrible breathing problems, had resigned myself to be a hopeless asthmatic, as I have had breathing problems for years. Then I changed from Levothyroxine to T3 because I was not converting the T4 to T3 properly, leaving me severely under-dosed. Now, I am amazed to say that I have given up my inhalers completely and don't even have a congested nose. I never even suspected that it was thyroid related. I put up with suffering for almost 30 years! Every year it got worse, I was on tablets, 2 kinds of inhalers, and even a nebuliser at times. Yet the GP never once suggested there was any hope it would go away.

Of course, it could be a happy coincidence.

Except that recently I have developed Trigeminal Neuralgia, and have to take a tablet called carbamazepine. This, unfortunately, blocks the Thyroid medication, so I had to increase the T3 to have the same effect. But before I realised this, I started feeling sluggish and - guess what! - I started having asthma attacks again.

NOT a happy coincidence, I would say.

Of course, not everyone will necessarily have the same experience. But check that your thyroid meds are optimal. That means checking the Free T3 level as well as TSH and T4. So many people have congestion thanks to under-treatment.

Marz profile image
Marz in reply tomarram

...sorry to intrude - have you tried increasing your B12 for the Trigeminal Neuralgia ? It worked for someone I knew ! Just a thought :-)

marram profile image
marram in reply toMarz

My B12 was very high (1169) and I had to stop supplementing - it is still over 800 (range 191-663) so I don't think it is anything to do with that, but thanks for the suggestion anyway! XX

Marz profile image
Marz in reply tomarram

Wow - you are right - it can't be :-)

marram profile image
marram in reply toMarz

lol

galathea profile image
galathea

Low iron? That can make you a bit breathless as your heart works harder to pump oxygen round with fewer red cells..... When was yours last measured?

G x

linda0944 profile image
linda0944 in reply togalathea

I don't know if. I've had my iron checked, I know everyone taks about results but my doc never tells me what mines are.

Stourie profile image
Stourie in reply tolinda0944

Linda, you must ask for a print out of your results and they cannot refuse. If they ask why you want them just say for your own reference.

Marz profile image
Marz in reply tolinda0944

You need your results so you can monitor your OWN progress and post here with them and the ranges. No one cares as much as you do about your body - so it's good to start taking control by having your results. Sometimes things are missed by Docs too - all too often in fact. Your Iron could well have been tested but as you were in range Doc would declare you normal when in fact it was at the BOTTOM of the range.... :-(

Don't wait for the Doc to tell you - you have to ask :-)

I dont know Linda but any breathing problems must be checked out to ruke out anything serious. Probably nothing to worry about but please see a doctor x

linda0944 profile image
linda0944 in reply to

I will do thanks

linda0944 profile image
linda0944

I will get it check it out feel worried about it. Thanks for replies

faith63 profile image
faith63

T3 is the answer for many with this problem..it can be thyroid related for sure.

Piplysmelie profile image
Piplysmelie

Hi I feel for you this type of thing can be very worrying. I used to be very breathless my iron was very low and I supplement now. I also switched to ntd. I am glad to say that I don't have this now unless I am lax with supplements! I would suggest getting checked out with your doctor just to check it is not caused by something else. Then request a print out of your bloods. Come back to the forum with your blood results and ask for some further advise.

Hope this helps.

Pip

linda0944 profile image
linda0944 in reply toPiplysmelie

Thank you I will do.

GRConwy profile image
GRConwy

I used to be breathless when I was first diagnosed, my doctor said my iron was lowish but ok. I went straight out and bought some iron tablets, within 2 hours of taking one what a difference! I went back to the doctor and he gave me 'heavy duty' iron tablets ( I forget what they are called), raising my iron made a huge difference and is significant in getting thyroid meds to work properly, amongst other vitamins and minerals. Geraint.

Ladywell profile image
Ladywell

Linda, the symptoms of low thyroid and B12 deficiency are very similar: are your BP and B12/folate/ferritin levels getting checked when bloods are done? I rode long-experienced similar symptoms into a BP crisis last year and still didn't learn about B12 def until well after - even though the bloods results taken throughout showed low B12 as well as red cells enlarged and not functioning properly - something I didn't discover until I had copies to look over. Check out the support website for B12 Deficiency/Pernicious Anemia (PA) and ask your doc for a B12 check asap. Blessings & good luck, Elizabeth x

linda0944 profile image
linda0944 in reply toLadywell

Will do thanks.

Hypopotamus profile image
Hypopotamus

I'll second B12 deficiency as a possible cause. If your serum level B12 comes back within range, then you should ask for further tests like active B12 level to rule out B12 deficiency. As Ladywell says, the information is all out there.

jacqui1957 profile image
jacqui1957

hi im Jacqui now iv got breathing problems and really is a good idea to go to see your doctor its not because of ur throxine tablets do u have aspma at all and the fact with you been over weigh is putting stress on ur heart I was told that and im not too bad now its just if I walk a lot im short of breath my dodtor prescribed me with MONTELUKAST tablets 10mgs taken wen you go to bed get it checked out better to be safe than sorry

JoyceA profile image
JoyceA

Hi Linda,

I had severe breathing problems too before I was diagnosed. I had an ECG and CT scan and there was nothing apparently wrong with my heart. As my thyroid results were in the normal range, that made my GP even more convinced that my symptoms were all in head. He actually said that to me.

Anyway, that's besides the point. I've felt better since I started medication but the breathing problems are not completely gone yet. I'm still working at getting the optimal dose of medications for me and also looking at my adrenals. The book STTM says it's a sign of adrenal fatigue. I know my symptoms are worse when I don't take enough nutri adrenal extra tablets so it could be!! I'm not entirely sure but I know my breathing issues are thyroid-adrenal related.

Best wishes

Joyce x

linda0944 profile image
linda0944 in reply toJoyceA

Thank you

decembersignup profile image
decembersignup in reply toJoyceA

Am in a similar boat to you and am getting tablets similar to the ones you mentioned to help. Recently I had an asthma type attack where I could not breath at all, the nurse put me on steroids for six days - I said to her that I had read a lot about how people with underactive thyroid should not take these steroids, she poo pooed this. I took the steroids for six days and at the end of it - having had six days of feeling well - had a bad back, headaches etc. All symptoms of adrenal problems.

jacqui1957 profile image
jacqui1957

they are to help with your breathing the tablets I take

Kitten-whiskers profile image
Kitten-whiskers

Good morning Linda,

I have had the same thing on many occasions - It is very worrying and your right docs don't listen.

What is your waking pulse and evening pulse like? My breathing was always much worse of a night and in my case it was one of three things - 1. my adrenals struggling, 2. Thyroid to low or 3. Medication dose to high for what my body could deal with at the time.

Are you having any other symptoms? does the Levo work for you & are you taking enough vits/minerals?

Now I understand that and learned to listen to my body and adjust things accordingly my breathing has settled down - no need to see the GP - yippee

Best wishes

linda0944 profile image
linda0944 in reply toKitten-whiskers

To tell you the truth when the doc gave me the tablets she said I would feel like a new woman a year later am still waiting I just feel a bit confused just now don't know what's wrong with me. But am going to go back to doc thanks

greygoose profile image
greygoose

So, as you can see from these responses, there can be many causes! It deffinately can be thyroid and/or adrenal related. Or low B12. Or low iron...

I had the most terrible breathing problems. I've had them all my life (but then I've been hypo all my life). At school I was told I was just putting it on to get out of games... the words 'cart' and 'horse' come to mind! When I was about 58 I was told I had asthma (in between school and 58 no-one was interested!) and given inhalers - which didn't help! It got worse and worse until I nearly suffocated going up stairs. Then, I started taking zinc - just to see what it would do for me - and, pouf! I could breath again!!!

Well, still not perfect, but soooo much better. And I'm vastly over-simplifiying my story because I haven't mentioned the magnesium etc. It's been a long haul of trial and error. BUT, my point is (ouf! I thought you'd never get there! lol), my point is that alllllll these things are important, all the vitamins and minerals, they all play a very important role that your doctor couldn't even guess at. Even if he tried. Which he doesn't. Doctors are notorious for not understanding vitamins and minerals and their crucial importance in our well-being.

And you might say, well, I eat a healthy diet, how can I be defficient in these things??? Very easily. I'll tell you a story (sshh! it's a secret!) (god, I'm waffling again!), my son wet the bed until the age of 6. Everyone said, oh he'll grow out of it, no point in going to the doctor for that! But he didn't. And after 6 years I'd had enough! I went to the doctor's and said look, I know there's nothing you can do, but I have to tell you... He said, oh, it's just a vitamin deficiency! Give him C, E and B complex and he'll stop. I said but how can this be??? He eats the same as the rest of us. He said yes, but not everyone absorbs in the same way! After one week he stopped wetting the bed and never did it again!

So there you are. And it's even worse for us hypos because we have low stomach acid and therefore even greater difficulty absorbing nutrients. So, get your vits and mins checked if you can. If not, try experimenting.

Hope you find your solution soon. Hugs, Grey

OrangeGirl profile image
OrangeGirl in reply togreygoose

Greygoose thank you for sharing your experience. I suffer from what is called "air hunger" and it started in 2011 when, through a pharmacy error, I was vastly undermedicated with levo getting only 10% of what had been prescribed (the pharmacy gave me the .25 tablet but not the 200 tablet and I didn't realize anything was wrong because I had never been prescribed 2 tablets before and the .25 looked bigger than my other doseages). I have sufferred from it for the most part ever since and always think I am undermedicated. However, since religiously supplementing with B12, Folic Acid, Iron, Zinc, Selenium, Magnesium and Vitamin D (and C) I have been successively reduced in my levo going from .225mg down to my present dose of 137 mg (this has taken 2 years) and during this time was somewhat able to control the air hunger although it always was a problem when exerting myself working out. This summer I experienced poison ivy and only time resolves this nasty itch but calamine lotion was recommended to help soothe the itch. Because I had it on both legs, arm and my torso I used a great deal of it. I did note that it has only two ingredients with one of them being zinc so I also applied it to my face and neck as a type of inexpensive sunscreen (having noted that when out for the day in the sun my arms never got burned (I live in Canada and our summers can be very hot). I had also noted that my episodes of airhunger were fewer and fewer with my last two workouts free of the problem. Your post gave me that eureka moment because I think all the extra zinc I am absorbing through my skin from the lotion may be responsible for decreasing this feeling of being short of breath.

greygoose profile image
greygoose in reply toOrangeGirl

I Orangegirl,

Air hunger is most definately a hypo symptom. I've had it all my life. Nobody knew what it was. They just kept saying oh do stop sighing!!!! I said, you may call it sighing, I call it breathing! lol

I also experienced a mistake at the pharmacy, they gave me 75 levo instead of 175! For a whole month I was homicidal! My temper knew no controls. I want'd to murder a motorist that cut me up at a roundabout and then gave me the finger! I followed him, nose to boot, for several kilometres until he managed to escape. lol It's a terrible, terrible thing to suddenly have a dosage cut like that. It can effect you in all sorts of ways. And then, when I realised (brain fog duh!) and went back to the pharmacy they said, oh, it's only a tiny difference!!!!!!!!!!!!!!! They just don't realise what it does to us.

Anyway, I'm a bit confused about why you wanted to lower your dose like that? Were you feeling hyper on the higher dose? And how do you feel now? Do you feel good or hypo? Would not a better solution have been to substitude some of the levo for T3? Although I believe it's difficult to get T3 prescribed in Canada, isn't it? Just take care it doesn't get reduced too far. And never ever allow your doctor to dose you by the TSH. The frees are far more important, plus how you feel.

But it's good to know that you've at last found a way to get rid of your airhunger. Zinc is great stuff and I hate myself for having resisted it for so many years because it stimulates the thyroid gland, and as I have Hashi's, I didn't want to stimulate my gland! Because that would mean stimulating the antibodies. I guess it just doesn't matter anymore as far as my gland is concerned! lol

Hugs, Grey

OrangeGirl profile image
OrangeGirl in reply togreygoose

Hi Grey,

My endo has been lowering the dose and yes he does base it on those stupid blood ranges and he will not prescribe me T3 - not sure if he prescribes it to anyone. I feel good however. I was resistive of the lowering at first but he always did it very gradually (at six month intervals with small decreases) and many of my overmedicated symptoms have disappeared (anxiety, dry skin and hair, loose bowels) at least for now.

Thanks!

greygoose profile image
greygoose in reply toOrangeGirl

OK, well keep a close eye on yourself and if you start having hypo symptoms put your foot down! No more réductions!!!

Take care, Grey

decembersignup profile image
decembersignup in reply toOrangeGirl

A lot of people spend hours studying and discussing those blood ranges - but you seem to think it is better to go by how you feel, I tend to agree.

linda0944 profile image
linda0944 in reply togreygoose

Thank you for your reply, I will try and getting them checked and I will try some vits ect and see if the doc will listen for a change.

patsyone profile image
patsyone

I have this, not saying its the same as me.But I have sleep apnea.I stop breathing while asleep.Tests show up to 30 times and hour.I now wear a cpap mask to sleep and much better now.Plus not as tired in the day from disturbed sleep.

greygoose profile image
greygoose in reply topatsyone

You do know that sleep apnea is a symptom of low thyroid, don't you? How are your bloods?

jezz21 profile image
jezz21

I also have sleep apnea but complex type. I stop breathing up to 100 times an hour. My respitory doctor said I should be a 40 stone male with serious breathing issues. I am female and weigh about 11 stone. Can't shift the weight though due to mobility. They managed to get my apneas down but then I had to do a different test called a star gazey that monitored signals from my brain. I stopped breathing for up to a minute so as well as cpap I am now also on 2% oxygen every time I sleep. I am always tired as I wake that often I never get a full sleep. I get chest pain with tight banding a lot so know how you feel.

Jezz

Auds profile image
Auds

Yes I get breathless a lot and chest pains. The GP tells me to go to A&E when it happens but as soon as they discover I have Chronic Fatigue and am borderline overactive Thyroid, they pack me home saying it is "my condition". Often breathlessness is a sign of exhaustion and can be because of low iron levels. But you ought to get both your chest and your iron levels checked and don't leave the GP until you have a form for both!

linda0944 profile image
linda0944 in reply toAuds

Thank you

OUTOFSYNC profile image
OUTOFSYNC

Hi

I used to have great breathing difficulty walking down the street before takingT4 / NDT.

Because being hypothyroid adversely affects all muscles in the body to some extent - it can affect lung and diaphragm function too.

Here is what Doctor Lowe wrote on the subject

facebook.com/ThyroidDisease...

Hope you find a solution that works for you.

OOS

Fed_up profile image
Fed_up in reply toOUTOFSYNC

Sorry for not understanding this but what is NDT ?

Thanks

OUTOFSYNC profile image
OUTOFSYNC in reply toFed_up

Hi

It`s natural dessicated thyroid tablets (made from dried animal thyroid gland) which is my choice of treatment.

You can read plenty about this on this website, and other sources of google`d research into hormone replacement for thyroid disorders.

There are also many books available to learn more about your condition from Amazon and elsewhere.

eg:

amazon.co.uk/s/?ie=UTF8&tag...

Hope this helps

OOS

greygoose profile image
greygoose in reply toOUTOFSYNC

Yes, amazingly enough, when there is not enough T3 to go round (every cell needs it) one of the last on the list for a hand-out is the diaphragm! I suppose because you can breathe with your stomach muscles, at a push. Most important are the heart and the brain.

So, when you get more T3 into you, the diaphragm often starts working again (did in my case). But beware! Too much T3 (making you hyper) gives you breathing difficulties again. It has to be just the right amount.

Hugs, Grey

OUTOFSYNC profile image
OUTOFSYNC in reply togreygoose

Yes Grey, the same with the heart I`ve found. Both too much and too little hormone replacement can cause palpitations for me.

Of course the medical profession only appears to acknowledge the too much bit!

I have recently been diagnosed with COPD ( I did used to smoke a lot) but interestingly, have found it listed on some older Hypothyroid symptom lists?

I think I first saw it in Dr Mark Starr, but have seen it listed some other places too.

It is laughable that such a complex balance is supposed to be managed with a `once a year`measurement of TSH in the blood.

Hugs too, OOS

greygoose profile image
greygoose in reply toOUTOFSYNC

Absolutely right about the heart! You can have too much of a good thing.

As to the diagnosis, treatment and management of thyroid, you can blame Bit Pharma for that. They control what is learnt in med school and they have too much to lose if doctors start Learning how to make people better! Who would then buy all their statins, blood pressure pills, beta blockers and the rest? It would cost them a fortune!!!

Hugs, Grey

Ivorheadache profile image
Ivorheadache

I was amazed that my breathing problems vanished shortly after starting Armour (NDT) then discovered it is the T3 that my body didn't get when on levothyroxine that helps.

decembersignup profile image
decembersignup

Had a similar experience. Everything I have read said that thyroid and breathlessness can go together, but many say that it is to do with adrenal glands and if you help those the asthma symptoms go away. I would check up which other symptoms you have that match adrenal gland problems and if so get some of those.

Mshri profile image
Mshri

Even me,recently diagnosed with hypothyroidism, I also got breathing difficulties,currently I'm taking leveroxine 100 mg,I reduced intake into 50 mg, I feel bit relief now

EbonyEvans profile image
EbonyEvans in reply toMshri

Mshri, This post is 6 years old. If you would like help or a reply you could start your own post as it’s likely to be seen by more people.

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