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.
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siguy22
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One suggestion I have is that perhaps you lost a lot of blood during surgery and you are now anaemic. Anaemia makes people very breathless. I think this is a very long shot, but it is easy enough to test and can be treated easily enough.
Can you get hold of the records from the hospital that did your surgery? I read your earlier post where you said you lived in the US. I don't know what your rights are with regard to getting copies of test results or operation reports, but if you have the legal right to copies then you should get them. Look out for anything suggesting that records have been altered - I have no idea how likely that is.
If your doctors are being obstructive in terms of testing, depending on which state you live in you can get some tests done in the USA without involving doctors or insurance companies. For info on your options see this link :
Scroll down until you find where it says "PLACES TO ORDER YOUR OWN TESTS" and see what options you have.
...
This next suggestion is going to sound really weird and is probably totally absurd... But I'll explain my idea with an anecdote...
When I was a child I had my tonsils and adenoids removed. I also, at the time, took music lessons on a wind instrument. I found that following surgery the shape of my throat had changed and I couldn't blow this musical instrument properly for about three weeks. It took quite a lot of perseverance and practice to get back to my previous level of playing because I had to learn how to deal with the change in the shape of my throat.
Obviously your surgery was a lot more drastic than what happened to me, and I just wondered if the change in the "architecture" of your throat was causing problems. You might have started hyperventilating without realising it. I suffered with hyperventilating a long time ago and cured my problem with breathing exercises. I still have a tendency to over-breathe and still do my breathing exercises when I feel I need to.
Do searches for any of the following :
Buteyko breathing
Belly breathing
Diaphragmatic breathing
Square breathing
Box breathing
Hyperventilation syndrome
Breathing pattern disorder
...
If your problem is caused by issues with the actual surgery you had then I can't offer any suggestions on what you can do.
Good luck, and hope you find something that works.
Are you taking this every day and always on empty stomach and then nothing apart from water for at least an hour after
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have Hashimoto’s
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
If vitamin levels are low this can cause breathlessness
This is a fairly frequent complaint we see posted on our Thyroid Cancer Survivors forum (inspire.com/groups/thyca-th.... There is no “just getting over it” and having your concerns dismissed out of hand is disgraceful. Many of our group members can suggest how they have dealt with the issue and the best resources for you depending what part of the country you are in.
If it is diaphragmic it could be related to inadequate T3 which is needed for muscles to produce energy - the diaphragm is a muscle. In the US your primary care provider can order the thyroid tests needed (TSH, free T4, freeT3, reverse T3) as well as D3, B-12 and a full iron panel. This should be your starting point. If you are a poor T4 to T3 converter, continuing a high dose of T4 (Tirosint) and not providing you with some T3 is totally counterproductive.
Your FT3 and FT4 would be very important to know . It's also possible that you are dosing with more T4 than you need and that you are not a good converter from T4 to T3 . The heart has a large receptor sights for T3 . You may also want to checkout your Iron/ferritin B-12 levels .
Meanwhile taking some magnesium and fish oils would be very helpful for you .
This might be worth a shot ... get your Iron levels tested (anemia) your a guy so its possible your doctors ignored this (just an idea).
When was your last labs done? Put them along with rangers here and any vitamin testing you had done.
How much meds and type are you currently on?
Have you had a follow-up ultra sound to check on recurrence of pap cancer?
I had thyroidectomy pap cancer what a horror show. I see endocrinologist Dr. Douglas Ball at John Hopkins (he is ok) he specializes in thyroid cancer but he refuses to test FT3 levels... it’s annoying to live without a major gland and no one including endos get it.
Go check your thyroid levels ASAP. I had the same issue and it turned out that I wasn’t getting enough hormones for my body to function properly. I was short of breath and it turned out that my TSH was 30. Do not wait please. My British doctor was making me wait saying, it will all level out as it takes 4-6 weeks for the hormones to balance but that is not true we need and absorb hormones on daily basis.
Hi, for me shortness of breath is a symptom of hypo, especially in the evening when someone seems to be squeezing my ribs until I added some T3 in the mix, then the symptom went away.
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