air hunger and secondary hypothyroidism?? - Thyroid UK

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air hunger and secondary hypothyroidism??

Peroxideblader profile image
36 Replies

hello it's me again I'm the one who has had great advice off you fantastic people regarding my ever increasing health issues all because I truly believe I have secondary hypothyroidism or hypopituarism ( as you have agreed and my blood tests point to yet the endless list of doctors say I'm FINE!!

ANYWAY I'm making an appointment to see a private endo I've had it on hold due to a family member being very ill...my question is I had to go to my doctors regarding air hunger I believe it's called where I can't take a deep enough breath in so I'm short breathing even at rest..ive waited since Monday to get in eventually today..it wasn't a doctor but a nurse who was lovely but she dismissed my air hunger and painful costacondritis as not relating to thyroid imbalance and reminded me I don't even have a thyroid problem according to their notes!! course I forgot I'm making it up!!

ANYWAY has anyone suffered from costacondritis and this air hunger it's scaringme know as I struggle to get enough breath ( it isn't anxiety or a panic attack I get them but this is totally different) thank you again

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Peroxideblader profile image
Peroxideblader
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36 Replies
Gcstewart profile image
Gcstewart

Air hunger was one of my main symptoms before I was diagnosed hypo thyroid, the other main symptom was excessive tiredness.

Peroxideblader profile image
Peroxideblader in reply to Gcstewart

thank you.. I wish doctors would believe it's s hypo symptom and although I'm bone tired it's because I can't get to sleep til 4am every night plus low iron makes me tired

Gcstewart profile image
Gcstewart in reply to Peroxideblader

Have you had private T3, T4 and TSH done. Even though my symptoms were pronounced I was only borderline and I’m sure that if I’d been tested on NHS they wouldn’t have picked it up

Also check your antibodies to see if they’re attacking your thyroid

Popo91 profile image
Popo91

Thyroid issues, air hunger... those are symptoms of mercury toxicity. It is very common. Have you ever looked into it?

Astridnova profile image
Astridnova

There is also a high risk of pernicious anaemia, or just B12 deficiency with hypothyroidism. You could experience air-hunger with that. And any aches and pains with thryoid problems.

Peroxideblader profile image
Peroxideblader in reply to Astridnova

I know that's what worried me especially when the nurse who is married to a go said if her ferritin is under 50 she feels awful..

and I supplement with a good b12 complex as my level was low and folate rock bottom

AnneEvo profile image
AnneEvo

Presumably you've had blood tests done in order for them to say you don't have hypothyroidism? If so get a copy of them and post them on here, people will be able to give advice based on your results.

Peroxideblader profile image
Peroxideblader in reply to AnneEvo

yes I've posted them all which is why I'm convinced it's hypopituarism as you ladies looked at my blood results and my t4 t3 and tag were all low and each test at least one of them was below range. I've printed off info to take to the endocrinologist but this air hunger was new to me

AnneEvo profile image
AnneEvo in reply to Peroxideblader

I hadn't seen your other post. I can't offer any further help; still getting my head round it all myself. But just a word about being slim - I'm hypo and am not overweight (in fact I started on levo in January and have lost a couple of pounds).

Good luck, hope you manage to get yourself sorted out.

Peroxideblader profile image
Peroxideblader in reply to AnneEvo

it's nice to hear you're slim I know no one takes me seriously when I say underactive because to the general public you can be overweight and hypo or slim and hyper but I know that's not the case. the last 7 years since I got all the symptoms I have had to increase my exercise big style and diet to stay a size bigger still..if I hadn't I would be much bigger with no difference to my eating..do you get judged because you don't fit the classic shape ?

AnneEvo profile image
AnneEvo in reply to Peroxideblader

No I don't. I've found the general public don't know anything about it and my doctor just went by results of blood test - I had/have very few symptoms, luckily, so hadn't been to the doctor about it. Hypo was only picked up after health check when I was 70 (nearly 3 years ago).

Peroxideblader profile image
Peroxideblader in reply to AnneEvo

wow that's a late diagnose but my nan only got diagnosed aged 73 but my uncle and 2 cousins all hypo were ignored by the nhs and only got diagnosed with a private endo and 6 years of never giving up pushing ...ive been 3 years getting nowhere so hopefully this year I'll get somewhere.. all the 4 family members with hypothyroidism were very large and had many symptoms so I'll take much longer to convince I think

AnneEvo profile image
AnneEvo in reply to Peroxideblader

Well as I said I've only had/have very few symptoms. 40 years ago I thought there was something wrong as I felt cold all the time, at work I'd have 3 layers of clothes on while everyone else had 1. (I also had burning feet for a few months, which I believe is a symptom). When I went to the doctor he just said 'it's like having a faulty thermostat.' Some years later I realised I was always tired while, again, nobody else at work seemed to be. This time the doctor looked at the whites of my eyes and said I was slightly anaemic; I didn't mention being cold as I didn't realise there was any connection. Also went through periods of brain fog; not being able to think of specific words even for simple things like cup and was stopping when traffic lights turned green lol. To be fair the doctor did send me for a brain scan as I was convinced there was something wrong, thought it was due to being hit on the temple by a stone when I was about 12 😆 but all was clear.

NWA6 profile image
NWA6 in reply to Peroxideblader

I’m not skinny but I suppose I am slim. I’ve put on up to 2stone recently. I’m nearly 5ft 8 and if I’m optimally treated my top half is a size 8/10 and my bottom a 10/12. Now my top half is size 12, cause I’ve got boobs now and my bottom is a size 12/14. So yeah I’m larger but I carry it well so people usually say to me ‘I thought thyriod problems made you fat, oh have you got the other one that makes you skinny?’

Nope nope I don’t 😩 I end up not talking to people about it, they don’t really care because they can’t get their head around it. it’s better to keep it simple.

Peroxideblader profile image
Peroxideblader in reply to NWA6

have you put on weight since taking thyroxine you mean? I always thought with hypo the thyroxine would stabilise your weight not make you gain it. ? I'm fighting hard enough as it is to stop too much weight gain plus with menopause it doesn't help. I'm a size 12 top I've a broad back and size 10 to 12 bottom I'm 5ft 10 so I look slim

NWA6 profile image
NWA6 in reply to Peroxideblader

I put on most of my weight during my brief Hyper phase, over a stone. I’ve always struggled with lethargy during the last 10yrs but weight gain wasn’t my worst symptom. Weight seemed to be water retention more than fat. My cycle has been - Hypo symptoms,more Levo, feel better enough to exercise then back to Hypo , more meds,exercise, back to Hypo. I can’t seem to stabilise but can ‘rally’ enough to push through symptoms. I now think I don’t convert well so will try combination treatment.

But no, weight for me is the least of my worries.

jgelliss profile image
jgelliss in reply to NWA6

I'm sorry that your still trying to sort it out for yourself . I hope you find your Optimal very soon . You bought up a very good point which I find that many of us miss that are on thyroid meds depended that have high levels of T4 or T3 can make us gain weight . Hyper either with T4 or T3 can do it to us . It raves up our metabolism and makes us feel hungry and never satisfied .

NWA6 profile image
NWA6 in reply to jgelliss

I haven’t felt hungry for 9mths or more. I’m calling it Hyper symptoms because it was new symptoms for me ie anxiety, insomnia, sooooo tired but unable to sit still, a restlessness. My TSH at the time was 0.09 and despite lowering my dose I was still 0.09 3mths later. So my GP called me a liar by suggesting that I hadn’t actually lowered my dose. I’m kicking myself that I didn’t ask for FT4/3 during this time frame. I do have about 6/7 full thyriod tests dating back to 2014 and these show that I’ve never had high FT4 and barely in range FT3 3.5 (3.5- 6.5) doesn’t matter how much Levo I take it never goes out of range and FT3 doesn’t rise.

Only thing I can think of is that I had an attack of the thyroid and the dying cells dumped a load of thyroxine and this pushed me over the edge into a Hyper like stage ITMS.

But just to clarify, I’ve never felt hungry, I’ve never over eaten.

NWA6 profile image
NWA6

I had Costochondritis a few years back and they said it was a secondary infection/inflammation due to Whopping cough. It was soooo painful, left me debilitated for months. I’m told it’s very similar pain to breaking a rib. But yeah, same type of breathing as you describe. I couldn’t breath in deeply.

Peroxideblader profile image
Peroxideblader in reply to NWA6

it's awful isn't it..it started last October it's pretty much every day to different degreesof pain..apparently ibruprofen helps but it hasn't for me....

NWA6 profile image
NWA6 in reply to Peroxideblader

I used Naproxen and something else that helped me sleep as getting comfortable at night made sleeping nigh on impossible 😩 But the relaxants to sleep made me feel spaced out in the morning as if I were on drugs 😬

Peroxideblader profile image
Peroxideblader in reply to NWA6

thank you..i wish I had something to put me to sleep no matter where I lay I'm in pain..I'll look at naproxen is it prescription only?? thanks

NWA6 profile image
NWA6 in reply to Peroxideblader

Both were prescriptions. You need sleep to get better, so the drugs are the lesser of two evils atm 😬

Peroxideblader profile image
Peroxideblader in reply to NWA6

I agree.. I've had this horrendous 4am to sleep pattern for over 7 years it's wrecked my health totally. I was given zopiclone which was a god send only 5 days worth then last year when I was very ill they gave me a low dose quarter the usual mg to take nightly but of course now as I now know in hindsight it's impossible to come off even such a tiny dose...if I could safely take a tablet to knock me out id take it forever because this sleep deprivation is torture...what do you take for sleep can I ask ?

NWA6 profile image
NWA6 in reply to Peroxideblader

They gave me something for sleep but it was 4yrs ago so I can’t remember. Costochondritis/whooping cough cleared up within 10mths so I don’t need anything for sleep now. Well I say that but I do get this weird leg thing (some call it restless leg but mines a squeezy thing but I’ll call it restless leg) I use a tens machine and now started Magnesium and Magnesium oil.

I really hope you find a way to get back to a normal rhythm. Sleep deprivation is the real killer.

I've never had costochondritis and don't know much about it except it's a problem with the ribs, but I do get occasional air hunger that is apparently related to hypothyroidism. It can also happen with anaemia, or a blood problem that affects your iron levels. Have you had this checked? I had low ferritin and folate (often connected with being hypothyroid) and was taking iron tablets for about a year. A recent test (beginning of March) showed my ferritin levels were now over the top of the range so I stopped taking them. Apparently one effect of high ferritin can be air hunger too (can't remember the details now). Which I've had in the last few months, though not severe. So for me it could be either or both! I think some other vitamin and mineral levels can also cause similar problems (again can't remember, but you need to get your vitamin D and B 12 checked anyway, they need to be optimal not just within range.

Peroxideblader profile image
Peroxideblader in reply to

I've consistently had low iron b12 and folate bit I supplement the latter two but the strong dose iron I begged a doctor for last year just ripped my tummy to boys I could barely stand with the cramps so after a week I had to stop I've started back on spatone today so it should help..but if I've got hypothyroidism I'm fighting a losing battle keeping my levels up.

Marymary7 profile image
Marymary7

This interesting film mentions air hunger and also Hashimotos....

m.youtube.com/watch?v=GlpXU...

NWA6 profile image
NWA6 in reply to Marymary7

That was really interesting MaryMary7 🤗 I’m suffering with feeling full but no appetite or small appetite. I have problems with dizziness on standing as if I’ve gotten up too quickly, constipation, vertigo ect ect. Basically a lot of symptoms outlined in the video. I’m going to give B1 a go and see if it helps 😀

Marymary7 profile image
Marymary7 in reply to NWA6

It was an abrupt ending. I was hoping for food sources but I will google them. I notice he sells nutritional yeast.... a b1 source....I suppose it was a free film😂. I like him he does lots of educational nutritional films.

Mary 😎

NWA6 profile image
NWA6 in reply to Marymary7

It was an abrupt ending 😬 but I googled the food sources. What doesn’t fit for me is the fact that he says carbs can deplete B1 aka sugars complex and simple. I don’t eat carbs as a rule. Possibly 4 slices of gluten free toast a week. Although I do drink probably a bottle of red wine per week, not all at once but a glass or two a couple of nights a week.

But my body is Hypo atm and I’m probably more susceptible/sensitive atm. When I do eat it’s home cooked meat and veg type food. Although I’m guessing my low appetite is causing malnourishment atm. It’s all a cycle. I’m sorting my Hypo, I’m looking at nutrition supplements and I hope I can get off this merrygoround So that I can start eating and exercising for a more natural health. It’s exhausting 😩

But thank you for the link, others doing the leg work is sooooo helpful 🤗

jgelliss profile image
jgelliss in reply to Marymary7

Thank You so Much for sharing this very informative and important post . With more B-1 we can deplete or magnesium too . So we must be careful to add more magnesium when adding extra B-1 . It's Great for pain too .

Peroxideblader profile image
Peroxideblader

I think it was you that told me that but this air hunger I wasn't sure it's stopping me from doing hardly anything 😕

Marymary7 profile image
Marymary7

I tried to give up carbs but realised that my ocasional treat of pizza or fish and chips every few weeks would be a no no🤣 Yes it's all so hard this juggling....trying to eat the right things to help not hinder Hashimotos. Not mixing supplements etc. Take Magnesium to help sleep but then don't take any thyroid meds for four hours....the list goes on.

Good luck 😀

Mary

pixelated profile image
pixelated

I have costacondritis, diagnosed 1993 - Is the short breathing because of the pain or just that you cant breathe deeply - I get a sensation of my airways closing - almost like a spasm with it but never associated it with hypothyroidism. I have been hypo for about 32 years only getting treatment about 4 years ago - I have very many hypo symptoms but didn't realise this one was thyroid related - I have lived with it, but i'd still say push to get it checked out properly. I thought I was having a bad attack of costacondritus about 3 years ago and it turned out to be angina and I now know I have heart disease - I had been ignoring the pain not thinking I could have this - (ps the heart disease is thyroid related and could have been prevented had the doctor started treating me back i the 1980's when it was first picked up) hope you get sorted ---

Peroxideblader profile image
Peroxideblader in reply to pixelated

oh sorry to hear that.. that's scared me a lot...i got referred for a ct angiogram with dye to check for angina and heart disease just waiting for an appointment from last November they had to cancel one..cant say I'm looking forward to the results that's all I need heart disease and untreated hypothyroidism ( because no doctor will take notice)....I'd heard thyroid can affect the heart in sure that's why I've got high cholesterol too as it's not my diet.

Well I've got to refer myself to a spirometry clinic to check my lung capacity and hope this air hunger isn't COPD and then ct heart scan..yippee exciting times eh ....

and no I forgot to say my air hunger is being unable to take a deep enough breath not from the pain....how have they treated your heart disease may I ask?? my sister in law ex nurse couldn't believe I wasn't sent for a chest x-ray to eliminate lung cancer so that's a worry 😏

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