Waking up breathless

[hashiman]

I've not posted for a while as most of my symptoms have been largely under control . It was found out last year that I also have low testosterone as well as Hashimoto's and now I am being treated for this I have really noticed a difference in how well I feel and I have certainly turned a corner , although I have had flare ups during this time so things are still not as good as they could be. Now my main issue is waking up breathless with my heart pumping out of my chest and it is scaring me to death , can anyone tell me why this is happening ,and what I can do to help myself ? Latest bloods were TSH 2.1 miu/L

[shaws Administrator]

Your TSH is a bit on the high side - the aim is 1 or lower. However, if you can get both FT4 and FT3 tested (you may need a private test) and this link will show you the reason why both should be tested. You may even need a small increment in dose.

thyroiduk.org/tuk/testing/t...

[hashiman in reply to shaws]

Hi Shaws many thanks for your reply , my iron / ferritin was high at my last blood test (I forgot to mention this in my post) could this be causing the breathlessness / palpatations ? I guessed I could do with a touch more Levo I’m currently on 125 mcg . My endo although private will only ever give me TSH so I guess I’m best to get a blue horizon test done and post results on here . Many thanks for taking the time to reply

[Mamapea1 in reply to hashiman]

I would get a private test done, I've had this for a long time, I believe mine has been caused by being hypo, albeit on loads of Levo (doesn't work for me), I think when hypo there is a tendency to 'shallow breathe', more noticeable when sleeping and (the hypo) muscles are relaxed and inactive ~ perhaps the slight reduction in oxygen causes a panic, and palps ~ it's getting better for me now I'm on T3.😊

You probably just need an increase, if you've been well up until now ~ just my opinion, based on my own poor sleeping 😴. I think its ridiculous that your private endo is only doing TSH! What are you paying him/her for?? Good luck with the increase. 🍀

[shaws Administrator in reply to hashiman]

This is another link and you might need to get FT4 and FT3 tested. This link is archived as Dr Lowe died but he had lots of sensible info on his website. He would never prescribe levo only T3 or NDT.

web.archive.org/web/2010103...

Mamapea1

[Mamapea1 in reply to shaws]

Thank you shaws ~ yes, I had forgotten I'd read that page of Dr Lowes last year ~ I have it here somewhere....... paperwork everywhere lol! That was another revelation!

I've been sleeping sitting up since 2009 because I deteriorated to the point where I couldn't breathe at all lying down ~ and I'm NOT FAT!! Longest I'd ever been asleep was 2 hours, then I would wake up gasping for air in a terrible panic.😳

Things are improving now I'm on T3 only, but I feel damage must have been done after all those years of being deficient ~ thank various gods I found this forum when I did! 🌟 x

[hashiman in reply to Mamapea1]

Hi Mamaapea1 thanks for taking the time sharing your experience . Whilst I have been ok on Levo I have put on quite a bit of weight, and after reading the links that Shaws provided to Dr Lowes pages it seems that Levo will cause this (so can testosterone replacement) I am not fat at all but obese if you look at BMI .... but all doctor says is all the England rugby team would be obese using BMI, the problem is in the last year I have put on nearly a stone and nothing has changed in my diet (gluten free) or training regime . So could I ask did you notice a difference in your weight after switching to T3 as well as an improvement with your breathing ? also you say that Levo didnt work for you , but did it lower your TSH and you just carried on with symptoms ? I only ask as I do feel better than I did pre diagnosis but could i feel a whole lot better on T3 ? I guess the blue horizon test would give me a clue. Many thanks for your time

[Mamapea1 in reply to hashiman]

Hi! You're welcome. Yes to all questions!😊. I have never been large, I'm a skinny little mama lol!, but I had developed a large abdomen (not caused by previous pregnancies), which seemed to be a collection of fluid caused by being hypo, and slow metabolism and constipation, also hypo symptoms, obviously didn't help!

I would say that 50% of it disappeared when I got vitamins and minerals optimal (advice from forum, mag citrate for the constipation, etc.) and the rest has vanished as I've increased T3.

This loss amounted to 2st.😳 please bear in mind, I'm currently 9st and 5ft 4ins. and I've never had bodily fat. My cholesterol level, however has been creeping up (hypo), and GP was constantly trying to put me on statins!😱

Yes my TSH almost vanished, (probably has now) and I have been on up to 300mcg of Levo and NEVER felt well in 25 years ~ just dx with loads of crazy disorders and given inappropriate meds for years!

I certainly think you're hypo at present, and need an increase in something ~ I would always say yes, you'd be better with a bit of T3, but this could stem from my intrinsic hatred of Levo, and the damage it has caused me. Why not try adding a bit ~ worth a try.👍

I assume you have a good diet, but as you mention a training regime, it sometimes happens when hypo that more than moderate exercise 'uses up' T3, ~ also some individuals seem to find that Levo becomes less effective over time. These are just suggestions I'm throwing out there.

I would definitely get the tests, ditch the endo, take advice from this forum, and if it's shown to be necessary when results are back, get yourself some T3 and give it a go ~ members will advise on dosage.

I know jack about testosterone,😳 but did the problems come about at the same time as you were prescribed treatment for that? I'm just curious as I know oestrogen can have a negative effect ~ HRT nearly finished me off! 😄.

[hashiman in reply to Mamapea1]

Thanks Mamapea1 really interesting the abdomen is where all my weight is too , I didn't have this paunch 2 years ago I just put it down to middle age spread ! My cholesterol was also high and I avoided statins .... I've heard training uses up T3 so a little worried by this but I don't want to become a fat old man .. stuck between a rock and a hard place as normal !! I have only been on Levo for 2 years so wouldn't have thought that was a long time to become less effective?

I have ordered thyroid plus 15 from Blue horizon so once I get those test results back I will post on here for members views , and maybe T3 will be the road I go down ?

The only reason I went private is my GP was dithering with diagnosis one test TSH was normal ish next was really low , I was feeling so low I just wanted answers and to feel better so I've stuck with this guy but cant help but feel he as useless as a chocolate teapot at times, I think your right time to take control back myself now .

Weirdly I've read that Testosterone (which ladies have and need too !) can convert to oestrogen ?? I wonder if this is why I'm having breathing problems and flareups ???

Thanks so much

[Mamapea1 in reply to hashiman]

It's seems you have many obvious signs of being hypo ~ high cholesterol, etc., ~ I'm assuming you don't consume loads of PUFA oils,😝 so I would use the opportunity of needing an increase to add in a bit of T3.

You may well find that your cholesterol level comes down, and paunch and oxygen levels also improve when optimally medicated. There may be vits and minerals to consider too.

I have spent a year sorting out my severe deficiencies that my GP said were 'ok' or 'in range' ~ it infuriates me how casual they are about these things, and how little they actually know! 😡

Interesting re the testosterone (I know I have some, and sometimes wish I had a bit more tbh) 😄 I understand that when one is oestrogen dominant (me), thyroid hormone can bind and become unusable ~ I haven't put this very well, I've just done a few rounds with my smallest granddaughter and she's played the life out of me! 😴 I hope you get the gist. Bottom line is... it could be a factor worth researching👍.

I'm glad you're ditching the endo, it doesn't sound like something that's worth paying for IMO ~ best to save the money for tests and T3. Trying to get an endo to prescribe T3 is like chasing unicorns these days, judging by comments on here.

You won't regret taking control of your own health, a lot to learn, but it's all on here, and you probably know more about thyroid than the endo already.😕 good luck with it all🍀.

[hashiman in reply to shaws]

Hi Shaws , thanks again for your reply. I will certainly get the blue horizon test carried out and post results for advice. I do feel better than pre-diagnosis 2 years ago but I had lived with this condition for so long you forget what it feels like to be "normal" and if I am accepting being half of what I could be using T3 / NDT I would be a fool not to explore that route. I guess the blood test will point me in the right direction.

[shaws Administrator in reply to hashiman]

Ideally, it is not just feeling better but relief of symptoms and we shouldn't feel unwell or that hypo is in control.