Tracheomalacia, or my goitre is squashing my trachea...

[Merfel]

Hi everyone,

Ultrasounds have shown my goitre is growing and is now 8-9 times the size of should be and is pressing on my trachea. A girlfriend says I wheeze a lot when I exercise, and sometimes I feel it pressing on my throat. I'm not on any thyroid meds, although the endo I saw thinks I should get it out as my thyroid according to her is barely working. I'll see my GP next week for blood test results. The ENT doctor I spoke with said that once the trachea is squashed too much, then it won't regain its original shape.

The ENT has me worried as I don't want to find I have reduced air intake forever, but I don't want to go on meds that I am dependent on for life, and I understand that at some point it will need to come out, but when? I'm in Australia and partial thyroidectomies don't seem to be common. RAI to shrink it isn't an option as it is mostly cold.

I'd love to hear people's opinions on should I wait our get it out soon. Also what should I ask beforehand? What bloods should I get done? Is T3 available in Australia?

Sorry for so many questions... The whole thing is weighing on my mind.

Thanks!

[humanbean]

I don't know anything about having large goitres, so I can't help with that, sorry.

However, I think you are suffering from some misunderstandings about the thyroid.

I'm not on any thyroid meds, although the endo I saw thinks I should get it out as my thyroid according to her is barely working.

I don't want to go on meds that I am dependent on for life.

If your thyroid is barely working then I assume your thyroid hormone levels are very low. if that is true then, (in some people) in order to help you to stay alive, your thyroid starts to grow so that it can try to produce more thyroid hormones. If low hormone levels are discovered early enough, and then the patient is treated to bring up levels of hormones to a healthy level, then with luck the thyroid may shrink, or at least stop growing. (I don't know a medical explanation for it, but some people with low hormone levels grow goitres, others don't. People can also grow goitres with hyperthyroidism.)

However, I think it is very unlikely that anything will shrink a thyroid that is 8 or 9 times the size it should be. Also, having radioactive iodine treatment will kill off a thyroid if the dose is high enough, but I'm not sure if it will shrink afterwards - helvella , diogenes or greygoose will know.

I think your only option is to have your thyroid removed if it is pressing on your windpipe. If the trachea doesn't always return to normal after the thyroid is removed, then why are your doctors waiting for it to get worse?

The other, really important, point is that the thyroid hormones that people take for hypothyroidism, however it is caused, are not drugs, they are hormones. Your thyroid, for whatever reason, is currently not capable of producing enough hormones for your needs and there isn't a drug that will cure it. The only option you have is to take the missing hormones you need. They are not addictive. They are replacing what your body can't produce.

Do you think of Type 1 diabetics as being addicted to insulin? You probably don't. The situation is the same as for people on thyroid hormones.

What I'm not clear on is why your doctors are so slow to act, if they know your thyroid is squashing your windpipe, it is barely working, and your hormone levels are low?

[diogenes Remembering]

With that size of goitre, I would think surgery is the only option. RAI would leave a great mass of dead tissue.

[greygoose]

Can't really add much more to that, but I do agree that the best thing would be to have it out as soon as possible. It's a terrible thing not to be able to breath properly, with the lurking possibility that it could get worse.

Also, if your thyroid hormone levels are low, you are laying yourself open to all sorts of other diseases - and you shouldn't really be exercising if they're that low!

Don't think of thyroid hormone replacement as 'medication', it's not a drug, as HB says. But it does keep you alive. And it's really not such a big deal to have to take a tablet every day - much better than what could happen if you don't replace the missing hormones.