Breathing problem after thyroidectomy for papillary thyroid cancer, please help, this is worse than the disease.

FormerMember over 4 years ago

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In October 2019, I got my whole thyroid removed for papillary thyroid cancer. About 2 weeks after surgery, I started getting serious shortness of breath that progressed to all day every day, even at rest. I also get chest pressure transiently and chronic sinusitis. Hard to sleep flat, some nights are very difficult either way.

My surgeon examined my vocal chords, and said they moved normally. I can talk normally, save I get airhunger after talking for a long time, but that’s probably related to my general air hunger.

At first it was suspected my thyroid replacement was too high and I was hyperthyroid, so my dose was lowered but that didn’t help. It only made me severely hypothyroid for a period of a few months, until it was raised back up. I gained a ton of weight during that interval.

I saw a pulmo in January who did a spirometery, it indicated “upper airway obstruction” (basically the bottom of the egg shape was a bit more flat than is normal) but he wasn’t too concerned and played it off like “oh you had neck surgery a few months ago, shake it off”. He was retiring soon so I think he just didn’t want to help.

I have seen a cardiologist and had my heart thoroughly examined, even an echo, and it’s fine. I have a healthy 20 year old male heart. This is stumping all the doctors I see, and they all wanna kick the can down the line.

One recent theory we are working with is that it is a symptom of acid reflux/GERD, as I do occasionally get more classic symptoms of GERD like regurgitation after meals. I am currently being tested for GERD (manometry, PH, etc). However this only onset recently, and I had no problem with this either before surgery, and PPIs/Sucralfate doesn't really do anything to help.

I just have a hard time believing that this has nothing to do with surgery or thyroid replacement. I did some more reading and saw about the phrenic nerve, and how its compression/damage can cause diaphragm dysfunction/weakness/paralysis, and some of the possible ways this is acquired is thyroid disease (I have/had concurrent hashimotos at time of surgery), hypothyroidism, or neck surgery. Is this a worthwhile theory? And who would I see to get tested accordingly? I am desperate, my life is on complete hold and this is ruining me.

Is there anything else you can think of that would cause breathing issues after thyroidectomy? Anything at all?

Demographics: 20 years old, 5’10”, 260 lbs, male, takes 200mcg Tirosint, previous thyroidectomy for papillary thyroid cancer and Hashimotos.

latchbrook over 4 years ago

Hi and a very warm welcome to the online community

I'm very sorry to read that you have breathing difficulties and that the doctors haven't been able to sort this out for you yet.

I don't have any experience of this to share with you but I noticed that your post hadn't had any response yet. You could post your question in the Ask a Nurse section of the community and one of the specialist cancer nurses will aim to reply within 2 working days.

Alternatively you could speak to a nurse on the Macmillan Support Line by phoning 0808 808 0000. It's free to call and they're available daily from 8am to 8pm.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope you manage to get this sorted soon.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

FormerMember over 3 years ago in reply to latchbrook

I had TT in 2020 followed by RAI and I actually have the same symptoms like you. I hope you read my message and can share with me if it has resolved.
I am from Montreal Canada, it's been now 15 months since my RAI.

barbaral over 3 years ago in reply to FormerMember

Hello
I don't think that the person who started this thread is still active on the site. Looking at their activity, this may well have been the only post they made. Please don't be disappointed but I don't think you'll get a response.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

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Breathing problem after thyroidectomy for papillary thyroid cancer, please help, this is worse than the disease.