Thyroid Disease and CPAP Question - Need Thyroid Experts

[linn]

I am currently doing my CPAP titration and the CPAP is working miracles for me. I feel like I am coming back from the dead.

I have Hashimoto's disease and a swollen thyroid (goiter)

The CPAP pressure is irritating my goiter and my throat feels swollen and a bit sore. I'm a little worried about my throat swelling shut...I live alone and it is a very scary thought.

The CPAP feels like it is saving my life and I am wondering if I should get my thyroid removed so that I can keep using the CPAP. What are my options?

I have been very sick for many years and the CPAP has helped me more than anything I have tried. I would love to hear some feedback - I see the Respirologist in about 2 weeks.

[DariaVader]

I had my thyroid removed for goiter. I know my apnea was much worse before I did that from my husband's reports of snoring and struggling to breathe. My thyroid was making enough hormone, and I was negative for Hashimoto's antibodies (or graves) my antibody levels are overall low so those findings may be spurious. It was a multinodular mess with cold and hot spots and no one really knows what happened. I have a hypothesis, but can't prove it...

My goiter got big enough to displace the trachea - I wonder how that affected my current level of apnea... I have no idea whether the trachea went back to its normal position or not.

I had the right half removed in 1999. They removed 34 grams; at that time the left was only marginally large. In 2010, they removed the 94 grams that was the remainder of my now very oversized left lobe and the isthmus. They wanted to remove the whole thing in 1999 and I wish I had let them!!!!!! (where is the donkey emoticon???) It was so much easier to heal the first time.

Since removal, my thyroid levels *feel* more right. Contrary to my fears, my body seems to be able to use the synthetic hormones (Synthroid) *better* than it did the natural ones -- the hormones my sick gland was putting out were somehow wrong - leaving me with symptoms of both hypo and hyperthyroid.

There is no cure for goiter. Depending on the makeup of the goiter (fluid filled cysts, adenomatous tissue, etc) it can be temporarily deflated by removing fluid, but it would just return. They've had limited success shrinking goiters with thyroxine supplement or with radiation, but IMO both of these are actually more problematic than surgery.

Depending on the size of the gland, given your relatively low AHI, it is actually possible that you would not need CPAP after surgery. Surgeons consider thyroid surgery to be no big deal. (arrogant bastiches....)

[linn]

I had my thyroid removed for goiter. I know my apnea was much worse before I did that from my husband's reports of snoring and struggling to breathe. My thyroid was making enough hormone, and I was negative for Hashimoto's antibodies (or graves) my antibody levels are overall low so those findings may be spurious. It was a multinodular mess with cold and hot spots and no one really knows what happened. I have a hypothesis, but can't prove it...

My goiter got big enough to displace the trachea - I wonder how that affected my current level of apnea... I have no idea whether the trachea went back to its normal position or not.

I had the right half removed in 1999. They removed 34 grams; at that time the left was only marginally large. In 2010, they removed the 94 grams that was the remainder of my now very oversized left lobe and the isthmus. They wanted to remove the whole thing in 1999 and I wish I had let them!!!!!! (where is the donkey emoticon???) It was so much easier to heal the first time.

Since removal, my thyroid levels *feel* more right. Contrary to my fears, my body seems to be able to use the synthetic hormones (Synthroid) *better* than it did the natural ones -- the hormones my sick gland was putting out were somehow wrong - leaving me with symptoms of both hypo and hyperthyroid.

There is no cure for goiter. Depending on the makeup of the goiter (fluid filled cysts, adenomatous tissue, etc) it can be temporarily deflated by removing fluid, but it would just return. They've had limited success shrinking goiters with thyroxine supplement or with radiation, but IMO both of these are actually more problematic than surgery.

Depending on the size of the gland, given your relatively low AHI, it is actually possible that you would not need CPAP after surgery. Surgeons consider thyroid surgery to be no big deal. (arrogant bastiches....)

Thanks Daria - I really appreciate your feedback I totally agree with your hypothesis.

I feel strongly that my goiter has caused or contributed greatly to my sleep apnea and I feel like I am finally getting to the bottom of my health problems.

I was on a thyroid disease forum and people were warning me not to remove my thyroid because I could feel worse. What could be worse than struggling to breathe at night?

Do you think a thyroidectomy is a good idea for my situation? Why do some people tell me I may regret it?

*I also want to mention that I have been taking Synthroid for 6 years and my goiter has shrunk a bit - but it will never be totally gone.

[DariaVader]

The main reasons for not having it removed are
- that some people seem to have a lot of trouble using the synthetic t4 which is all the insurance companies would cover (this is changing). many are sold on Armour pig thyroid which contains whole thyroid and not just T4. If your liver is working, it will convert the necessary T4 to T3 (usable hormone) as you need it and that is truly the best and safest way to get T3 IMO

- after removal, you are now dependent on pharmaceuticals to stay alive.

I made the decisions to have mine out. I wish I had gone ahead and done it sooner - I could have saved myself a decade of unstable hormone levels!

[linn]

The main reasons for not having it removed are
- that some people seem to have a lot of trouble using the synthetic t4 which is all the insurance companies would cover (this is changing). many are sold on Armour pig thyroid which contains whole thyroid and not just T4. If your liver is working, it will convert the necessary T4 to T3 (usable hormone) as you need it and that is truly the best and safest way to get T3 IMO

- after removal, you are now dependent on pharmaceuticals to stay alive.

I made the decisions to have mine out. I wish I had gone ahead and done it sooner - I could have saved myself a decade of unstable hormone levels!

I am already dependent on pharmaceuticals to stay alive. I will ask the Dr. about this in two weeks.

I'm afraid that I am going to have to fight for them to take my thyroid out

If anyone else has any feedback - I would like to hear it. Thanks!

[Stiffdoc]

Goiters do not diminish in size on their own. They only get bigger, some slowly, some more rapidly. Goiters take up space and press on important things, especially the trachea, as well as displacing the tongue upwards. If one is feeling the physical displacement effects of a goiter, it is generally better to have it removed.

As far as being dependent on medication, look at it like diabetes. Everyone with adult onset DM (type II) starts on insulin, if they live long enough. I've been insulin dependent for 10 years, and I've travelled over much of the globe during that time. In retrospect, I should have started insulin a year earlier than I did. My insulin goes with me everywhere. Look at your thyroid medication in the same way. Or your CPAP, for that matter; my machine has travelled with me for a decade, and I just recently purchased a small CPAP just for travel alone.

[linn]

Goiters do not diminish in size on their own. They only get bigger, some slowly, some more rapidly. Goiters take up space and press on important things, especially the trachea, as well as displacing the tongue upwards. If one is feeling the physical displacement effects of a goiter, it is generally better to have it removed.

As far as being dependent on medication, look at it like diabetes. Everyone with adult onset DM (type II) starts on insulin, if they live long enough. I've been insulin dependent for 10 years, and I've travelled over much of the globe during that time. In retrospect, I should have started insulin a year earlier than I did. My insulin goes with me everywhere. Look at your thyroid medication in the same way. Or your CPAP, for that matter; my machine has travelled with me for a decade, and I just recently purchased a small CPAP just for travel alone.

Thanks for the feedback. It's funny you say this because I am starting to lose my voice - The CPAP is making it worse.

I also feel that my tongue is large and displaced.

I feel like the doctors aren't listening to me when I tell them how bad it is. They know it is chronically inflamed but don't want to remove it.

I can't live without the CPAP - so my thyroid is going to have to go! I'm not sure how I will convince them

[Mark Douglas]

I too have Hashimoto's. My thyroid does do something if not quite enough and so I have been reluctant to mess with it. I am now totally supplied by Synthroid but I won't die right away if I cannot get it. As I once (and hopefully again) lived aboard and cruised a sailboat I am willing to put up with the downside. Sort of like a life jacket. I probably won't need one but is nice to know is available. Were this not the case I'm sure I would have it removed as definitely causes problems swallowing and breathing. Now that I am thinking about it it is really bothering me

I wish you well.

[linn]

I too have Hashimoto's. My thyroid does do something if not quite enough and so I have been reluctant to mess with it. I am now totally supplied by Synthroid but I won't die right away if I cannot get it. As I once (and hopefully again) lived aboard and cruised a sailboat I am willing to put up with the downside. Sort of like a life jacket. I probably won't need one but is nice to know is available. Were this not the case I'm sure I would have it removed as definitely causes problems swallowing and breathing. Now that I am thinking about it it is really bothering me

I wish you well.

Hi Do you have goiter? Does the CPAP irritate your thyroid?

[Mark Douglas]

nothing really visable but yes nodules and some constriction. CPAP doesn't cause any issues other than motorboat mouth