Thyroid UK
87,733 members102,420 posts

Breathing disorders/sleep apnea

I have tried to explain this to my Dr since at least 2009 (that's when I finally accepted I had to sleep downstairs on the sofa, sitting up) that I couldn't breathe when lying down, and that I couldn't get my breath when resting, not just 'breathless on exertion' ~ the answer? 2 different inhalers ~ I got the 2nd one when I complained I still had symptoms and was sick of waking up gasping with ROARING tinnitus ( although that's constant ~ it seems louder after sleep?) and unbearable muscle pains. Then today, after being 'worse' this last week ~ stress, etc., I woke at 4am (3rd 'wake of the night') and literally thought my number was up! I could not breathe at all and staggered to the front door on the shaky, painful 'jelly' legs that were definitely not ready for action, hoping the outside air was of better quality. It was marginally better but I have so many bruises from bouncing off the furniture I'm not sure the effort was worthwhile! Feeling fed up and annoyed, and too bruised and stressed to try for more oxygen grabbing sleep, I looked on this forum and a reply to a post led me to a Dr Lowe link on the very subject of disordered breathing! And there it all was, as usual, all the answers! Of course, I'll have it again tonight, but at least I know WHY I have it, even if my Dr doesn't! Thank you so much to the person who posted that link ~ I forgot who it was in the excitement! One day hopefully, I will post on here I don't have it anymore ~ fingers crossed and T3 pending x

4 Replies

Our doctors in the UK appear to be poorly trained as they know none of the clinical symptoms. You would expect them to know at least a number but Endocrinologists should know them all.

Once upon a time all doctors knew them as that's how we were diagnosed - by clinical symptoms and prescribed NDT. No blood tests then only knowledge. Nowadays it seems all too easy for doctors to believe they just need to look at the TSH alone and decide if we need it reduced. Rarely will they raise the dose as it will be 'within the range' when the TSH should be 1 or lower.

Take a copy of Dr Lowe's article on breathing as it is a serious condition and I hope someone will prescribe T3 for you on a clinical need basis. I shall also give you a link and tick off your symptoms.

Ideally, when on the correct dose (ignoring the blood test results) and you feel well with no clinical symptoms, you are on the right dose of thyriod hormones.

Dr Lowe was also an Adviser to before his untimely death. All of our knowledgeable doctors have usually retired or died or been struck off because they stuck to their 'old fashioned' methods of diagnosing/treating and it's difficult to have someone understand exactly how we feel.

I shall give you another of his links:--

1 like

Thank you for your reply and advice ~ it would be easier to tick off the symptoms I DON'T have to be honest ~ I have most of them, accumulated over the last 24 years, during which time I have felt like a hypochondriac and a stressed out time waster, in the nicest possible way, of course. Every 'illness' I have suffered from in all those years are on this forum. I have read all sorts of NHS booklets and handouts from hospitals and followed all the advice therein to no avail ~ because I didn't have the conditions in the first place. I spent a fortune on all manner of therapies and remedys when I could have spent the money on a 'good' thyroid doctor, had I have known. I was obviously very naive and far too trusting. I still find it unbelievable (almost) that GPs could be so misinformed or disinterested in their profession and their patients. Call me a jobsworth but if I had a patient for 24 years with worsening symptoms I might just pick up a book or a laptop! The only other explanation is the good old MONEY the root of all evil! I'm just so glad I've found this forum at last and I'm learning every day ~ thanks to you guys x

1 like

Mamapea1 You said : "I spent a fortune on all manner of therapies and remedys when I could have spent the money on a 'good' thyroid doctor, had I have known. I was obviously very naive and far too trusting."

We all do that. I very much doubt you would have been able to find "a good thyroid doctor" to be honest. The only one I saw was Dr P (renowned on here) - But he was over 100 miles from me, was very expensive, I was virtually too ill to travel that far, and because he was so incredibly busy, I was left on too small a dose of T3. He got me changed from t4 onto T3 but in hindsight much too small a dose - 20mcg a day. So don't beat yourself up over failing to realise you needed a 'good thyroid doctor'. They are not out there; and if there is one, it's like finding a needle in a haystack. All Professors of Endocrinology should be capable of healing all of us. But they don't. I have seen FOUR Professors of Endocrinology. One, and I so wish I could name him here, nearly killed me in 2006/7. They honestly do not deserve the air they breathe. Take care x

1 like

I have Sleep Apnea and Laryngospasms (How ever you spell it ) Its very frighting for you and others but using a Cpap for the OSA is the gold standard treatment ..


You may also like...