I have had hypothyroidism for 20 years and have been reasonably well on the meds I am on except for becoming very breathless just recently. I am taking 120 mg of Levothyroxine and 20 mg of Liothyronine a day. Yesterday I had the results of my blood test and my TSH was 0.02, FT4 was 14.7. I had asked for T3 test but they never do it, even though my Doctor makes a special request for it and marks the form "patient not converting". My Doctor was not keen to reduce my Levothyroxine because my TSH is on the low side. She has also arranged for me to have a chest xray to eliminate any problems in that direction and following an ECG which only showed the right side of my heart was a little larger than the left, she is arranging for me to see a cardiologist. However, I wonder if anyone else with an under active thyroid experiences severe breathlessness, I need to do very little, just going up the stairs and I have to sit down until I get my breath back. I would appreciate any help.

16 Replies

  • How are your levels of Iron - Ferritin - Folate - B12 - VitD ? Is it possible for you to have the FT3 test done privately through Thyroid UK ?

  • Thank you Marz. I was thinking of getting my T3 test done privately. How do I go about having it done through Thyroid U? I don't know my levels on the other things you have mentioned. Would it make sense to have it all tested privately with the T3 or can they be done on the NHS?

  • Good idea and shaws has given you the link :-)

  • You might have to get your own Free T3 blood test as many labs don't, particularly if the TSH is in range. You get a small discount if you quote their Code No. for

    You might need T3 only to relieve your breathlessness - it could be due to something you've become sensitive too in the levo. There have been studies and you will see info in link below. At least they (I think) should give you a trial of T3 only, to confirm that it's levo that's the problem instead of giving you other types of medications first.

    Read first question/answer in this link:-

  • Thank you Shaws. I have just read the article and will show my Doctor. She is good with looking at anything helpful. I used to have sleep apnoea but lost 4 stone and no longer suffer with it. Will also get a private T3 test.

  • It is a Free T3 test and you can read about it further down the page on this link:-

    You can also get a small discount on any of these labs if you quote the appropriate TUK No.

  • I agree with the others that you should get a private T3 test. Breathlessness happens when over OR undermedicated, and it's hard to tell the difference. Because you say it happens with exertion, I'd be inclined to think your T3 dose is too high. There's more info on thyroid's effect on breathing here:

  • Thank you HIFL. I will get a Free T3 test.

  • I was extremely breathless and was also dizzy even when sitting down when my iron level was extremely low.My bones also hurt more.

  • fairyeyes, sorry to hear that, are you alright now?

  • I've had some health issues recently related to having too much thyroxine in my system. I had an enlarged right heart and acute breathlessness on mild exertion. Mine came on suddenly and I believe it was caused by a Hashimoto's flare (my autoantibodies have been tested and they are up). Even though I am fighting to get the docs to agree, I believe the pulmonary hypertension I was diagnosed with was secondary to thyrotoxicosis. The minute I reduced my thyroid meds, my symptoms such as racing heart and breathlessness improved or disappeared altogether.

    At my worst, I was unable to walk across the room without getting very breathless. As I said, I went from feeling perfectly normal to almost bed ridden in the space of about a month. Once I made the thyroxine connection, and reduced my meds, my symptoms cleared up in about a week. My pulse went from 120/130 bpm to about 88bpm. This was without taking the medicine for pulmonary hypertension the docs were almost bullying me to take.

    Based on the rapid onset of my symptoms, the heart doc thought I might have a pulmonary embolism. That turned out not to be the case but it's worth investigating? Good luck and let us know how you get on.

  • Thank you for your reply LuxN. Are you taking T4 and T3? I presume you reduced your T4. How much did you reduce it by?

  • I was taking NDT and I was on 5 grains. I've been on that dose for 5 years and shared my results here so people could check I wasn't over medicating. Once I realised the thyroxine might be causing the probs I dropped the NDT to 3 grains and stopped it totally after a week and went back on to Levo. I have been on that for a few months. I am on a much lower dose of that than I used to be - 100mcg rather than the 175mcg I used to need.

  • Def get your B12, folate and ferritin checked as low in these ranges will cause breathlessness. Don't accept 'normal', as ever you want optimum in range - certainly over 500 at very least for B12.

  • Thank you Bluedragon. Will arrange a private blood test to get it all done.

  • I agree with Marz, get those other things tested. I was very breathless when my B12 was low.

You may also like...