Horrible shortness of breath after thyroid surgery, can't get help?

[siguy22]

In October 2019, I got my whole thyroid removed for papillary thyroid cancer. About 1.5-2 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 vocal fatigue. Hard to sleep flat, some nights are very difficult either way.

First thing you think of if you are breathless after thyorid surgery is RLN damage. My surgeon examined my vocal chords, said they moved and dismissed me. I have seen another ENT who said the same thing. They move so you must be crazy/faking it.

I have been cleared by pulmonologists, cardiologists, and endocrinologists. In all other respects I am, or was, a healthy 20 year old male. My pulmo I saw in January said I had "variable extrathoracic upper airway obstruction, most certainly due to thyroidectomy", but he played it off like "oh kid, you just had neck surgery a few months ago, it'll go away, shake it off". It has not gone away, my breathing is still screwed up today. He retired soon after.

The surgeon suggested GERD as a catch all, but PPIs and Sucralfate don't help, and it wouldn't explain why it came on so sudden after surgery.

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 neck surgery, thyroid/autoimmune disease, etc. I certainly feel like someone who has diaphragm weakness, and I am going to try and get a sniff test/fluoroscopy, but I realize thats a long shot.

Is there anything else I should do? My life is simply not worth living anymore, I am struggling just to breathe every day for almost the last year. I was thinking about going to see otolaryngologists/Head and Neck surgeons at Johns Hopkins, the cream of the crop, and ask them about complications of surgery and anything they can do (Laryngeal EMGs, Re-exploration, etc). Maybe scar tissue inside my neck healed in an awkward way, compressing a nerve/my airway enough for it to cause distress?

Demographics: takes 200mcg Tirosint, previous thyroidectomy for papillary thyroid cancer and Hashimotos.

[Sleepy101]

Hello Siguy,

I am new to the group so I'm sorry I don't have much experience or advice. But I am sorry to hear that its been causing you issues after the op. Has this improved? If it was me and I could afford it and I would see the specialist. You know your body and you don't feel you are being listened to so see that specialist, it might help you. If I stopped every time a Dr didnt listen to me I would still be struggling on with the same issues Best wishes

[loveforlife]

Hi

I had difficulty breathing after my operation, my speech was also badly affected. I saw a speech therapist who gave me some vocal cord exercises to do and this did the trick, I got back to normal after seeing her only twice and doing very simple exercises for several weeks. I would not have believed they could make such a difference. I now have no problems with breathing. I saw only 1 post on the whole of the internet with this advice and I am so glad I did. If you contact the thyroid cancer nurse (if they have one) who are usually paid by MacMillan they will be able to get you an appointment, they seem to be able to get to the front of the queue with things.

[Nanaedake]

Sounds like you're in the USA? In the UK you could ask for a referral for a second opinion. If it were me I would want the problem investigated. Have you had vitamin levels tested? Low iron or B12 anaemia can cause breathlessness. Get, B12, folate, ferritin and vitamin D and calcium levels tested then post on this forum and people might be able to advise. Remember to add lab ranges and unit of meadurement as lab ranges vary country to country.

[Nanaedake]

Read up on anaemias as they can cause breathlessness. Some anaesthetic contains nitrous oxide which knocks out B12. Are you vegan or vegetarian? Even if you're not, you should get B12, folate and ferritin checked out for anaemia. Also a full iron panel to include TiBc would be a help to exclude anaemia.