Anyone else very breathless?

Hello! I'm new here and wondered whether anyone else has my problems!

I'll run through what's gone on up until now.. I had a complete thyroidectomy nearly 5 years ago, due to large growths. It had taken a long time off illness though, before finally being diagnosed. After surgery, took thyroxine. I was good on it for 3 months, then just got worse and worse. I gained 4 stone. The docs told me all my continuing problems were nothing to do with my thyroid, as all the tests were in range! As they were when I had large growths all over it!

Anyway...fast forward and I am now on NDT, Erfa, from Canada, and I am soooo much better. Everything seems to slowly be going back to normal. 2 years now and I'm still getting improvements.

But...my one remaining problem is breathlessness. It just doesn't seem to get any better. I try really hard too. I go on long walks, go to the gym etc, but don't seem to improve. When I read all the thyroid forums, no one else seems to suffer this problem. Is there anyone else out there that does??

9 Replies

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  • Oh yes missmolly55, there are very many of us who feel breathless. Just type "breathlessness" into search bar at top and you will get loads of hits.

    It sounds as if you have done really well getting nearly back to "normal".

    The breathlessness may even go with some fine tuning of your meds.

    If you post recent blood test results, others who are more experienced will comment.

    Probably good to post vit B12, vit D, folate and ferritin blood test results too as deficiencies can alter how your meds work.

    Well done for coming this far. I'm sure you will be able to sort the last bit.

  • Good to hear of your improvements :-) Your breathlessness could be to do with LOW Iron/Ferritin/Folate/B12/VitD They all need to be high in their individual ranges for you to feel well and for your medication to work efficiently. Do you have any results with ranges you could post - and then people can comment.....

  • Miss Molly my breathlessness disappeared after I started taking NDT 6 weeks ago after 15 years on Levo. So far it has not returned, even though I have not sorted all my problems yet, that was one of the first things I noticed that changed for the better.Good luck in fine tuning your meds which is what I will be doing after getting Vitamins etc to good levels.

  • Did you just stop Levo one day and start on NDT. I take 100 mcg 5 days and 125mcg twice a week, have no thyroid and would like to go on NDT but don't know how to go about it.

  • You didn't say how much NDT you take or what your labs look like. Any chance you're overmedicated? Both too much and too little thyroid hormone will cause breathlessness: tiredthyroid.com/blog/2014/...

  • Hello,

    I too am breathless which has only started since my Liothyronine was stopped. Drs now trying to get me on levothyroxine only but they say bloods are fine so I should be fine (been here before so I am now fighting). Spoke to me endo who has suggested that I am under medicated and possibly the cause so I have upped my meds today.

    I have however had a blood test to check I was not anaemic or any other cause for breathlessness.

    I too have gained a significant amount of weight whilst the Drs mess around my meds to manage their budgets (I'm not at all angry at this!). I am now at my heaviest ever and I think honestly this must have an impact on my breathing too.

    I suggest getting checked out by GP and get some bloods taken (full blood count, ferritin, vit b12 and folate are a good place to start) to make sure there is not another cause for your breathlessness and check your thyroid bloods.

    I hope this helps

    good luck. X

  • Some of us on ERFA have found that it isn't working so well since they changed manufacturing plants last year. One of the symptoms I have noticed is that I started getting breathless again.

  • I do. Even walking on flat ground I am panting like a dog. It's embarrassing. However, I am not having treatment so there's an excuse for my condition, so I imagine your continuing problems must be very frustrating.

  • Breathlessness is an adrenaline symptom. Can happen when you increase your thyroid function with T3 - this also increases your body's need for calories/nutrients. How many calories are you getting? You could try eating more nutrient dense meals more often through the day.

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