I wonder if my long term breathlessness is due to under medication of my thyroid?

Hi friends. I've just stopped my t3 and increased my t4 to make up for the shortfall. The reason behind this crazy idea is that I want to see a true reading of my TSH. We all know that t3 suppresses the TSH. My blood tests always come back normal. I have been so breathless since last year and the breathlessness has got so bad that I'm on night oxygen and now my doctor has prescribed mobile or ambulatory oxygen. In seven days time I shall have a blood test to see what is going on with my thyroid. In the meantime, I am sleeping 12 hours and the depression has started, I think as a side effect of stopping the t3 or just the adjustment. I've been waiting months for a pulmonary test. My doctor has written twice to the hospital, now another doctor is also writing and a cardiologist requested pulmonary testing back in Febriary 2016. So, whether my breathlessness is due to too little thyroxin, heart failure or copd is anyone's guess. Do my circumstances sound familiar to anyone?

12 Replies

  • You might have very low levels of iron, and/or ferritin, and/or low levels of haemoglobin, haematocrit, red blood cells, and other relevant parameters...

    Has anyone given you a full blood count, a full iron panel, and checked your levels of vitamin D, vitamin B12 and folate?


    ^^ Very useful link and comes from a useful website. By the way, Complete Blood Count is the US name for a Full Blood Count.

    Be aware that people can have more than one kind of anaemia at the same time, and that makes interpretation of blood tests difficult.

  • Hi,

    I agree with humanbean, I more or less had exactly the same thing except they upped my Thyroxine but I had all the above, low Vit D, low folate, my breathing became so eratic it hurt when breathing and was very breathe less, also my hair loss was really bad.

    So my GP did a full blood count, and put me on the right medication. Now I feel as good as I will get concerning these health issues.

    So please insist to have a full blood count, it worked for me.

    Good luck


  • Breathlessness on exertion is a sign of overmedication. Have you seen this? tiredthyroid.com/blog/2014/...

    Since you were on T3-only, it's possible you were overmedicated. Some of the other signs of too much T3, like muscle weakness of the upper arms and thighs, are listed here: tiredthyroid.com/blog/2011/...

    Have you ever tried a combo of T4 and T3?

  • In my own case, I had breathlessness and it turned out my adrenals were exhausted. It felt like 'air shortage'. Yours must be bad if you are on night oxygen. I saw Dr P and he said the adrenals get low if the thyroid is low and undermedicated for a long time (years).

  • I have had breathlessness, pop up off and on and its very debilitating. Are you actually low in oxygen or this just a sensation of low oxygen? Are you hypothyroid or ever diagnosed as such? If so, do you have hashimotos..why are you hypo?

  • Hi Faith63. Thanks for your response. I have Hashimotos. Runs in my family. Without oxygen at night, there is a risk I might die, as my breathing is very shallow and stops, so the sleep study says. However, I have posted that now I am being tested for suspected myositis, a muscle disease, I was also diagnosed with camptocormia, wasting of back muscles, two years ago. I didn't think I had a nutritional problem as my diet is good with added supplements. I'm back on T3 as going without made me feel worse.

  • I don't understand what you mean by your 'true' TSH. It's not that T3 suppresses the TSH, it's just that when you are taking T3, you don't need the TSH anymore. If you go onto T4 only, and you can't convert it to T3, your TSH will be high. But, that doesn't mean it's your 'true' TSH, it just means you can't convert T4 to T3. In any case, once you are on thyroid hormone replacement of any kind, the TSH is irrelevant. It's the FT3 that is the important number. I think you're making yourself ill for nothing, really.

  • If you are capable of converting T4 to T3, your TSH will probably be just as low on levo. How's your iron and B12? I was very breathless until I got my B12 over the top of the range.

  • Dear Angel. Many thanks for your response. All is irrelevant now as I'm being tested for suspected myositis. In fact, the neurologist is convinced I have it. So problem solved. It seems my perserverance has paid off. Finally, I got to see the right consultant.👍 I would urge all those who feel ill long term, to keep pestering their doctors. Your ill health might be more than just your thyroid.

  • How is your problem solved? Is there a cure? Why is your body going haywire? All you mention, could be from low thyroid and also autoimmune disease. Google Mark Hyman MD on treating autoimmune disease..it can be healed, it is about the gut and food sensitivities.

  • Caprice, I agree with faith. Myositis is a symptom, not a disease. If your doctor is just going to give you anti-inflammatories and not deal with the root cause, then your problem is in no way solved.

    "Myositis refers to any condition causing inflammation in muscles. Weakness, swelling, and pain are the most common myositis symptoms. Myositis causes include infection, injury, autoimmune conditions, and drug side effects. Treatment of myositis varies according to the cause."


    I don't know if doctors really don't understand the difference between a syndrome and a disease, but they tend to use this technical sounding words in an effort, I think, to over-whelm us, and shut us up. Make it look as if they're actually doing something. Reading this article suggests that it is your Hashi's that is causing the problems, so he still needs to learn how to treat it correctly.

    Camptocormia is also a syndrome, not a disease - you cannot be 'diagnosed' with a syndrome. It's like 'diagnosing' you with a Sneeze, when you have a cold. It's a symptom of something else. If you google camptocormia, you will find that it is also caused by inflammatory diseases, like Hashi's. So, it's your Hashi's that needs to be addressed in the end. And, it has nothing to do with your TSH. :)

  • Hi Greygoose. Thank you for your knowledgable response. The diagnosis has now changed to myasthenia, though it has not affected my eyes much. Diagnostic tests are ongoing, though I've been told the condition is treatable but not curable. All I know is that I feel very ill. I'm 75 years of age in a few weeks and I wonder how much longer I can hang onto life. I seem to be deteriorating on a daily basis. Thankfully, I have a supportive and caring husband and a good GP. Thank you, Greygoose and thank you to all of you that have taken time to respond to my call for help.💜💖💙

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