I am 27 years old, diagnosed with a complex left thyroid nodule and 3 small solid thyroid nodules on the right in Jan this year. They came on very quickly and did not cause me any real problems. Due to their character on my FNA and ultrasound, I underwent total thyroidectomy in late Feb this year at the recommendation of my surgeon, another ENT specialist and my family doctor. Thankfully my cysts were all benign by pathology an considered to be a multinodular goiter. I have never had any health problems at all in my life, until after having this procedure performed. Since my surgery I have not been able to sleep comfortably lying flat on my back and more importantly I have had very random times with shortness of breath, tightness all over my neck and upper chest, and a general feeling of a more narrowing airway or throat---this happens both while sitting stationary and more so when I am picking up my toddler or running errands or busy doing chores at home or out running them. I do not believe that there are any allergies of the air/environmental factors causing this. There have been times that I just have to sit down and rest and other times I just wait for it to pass and try not to think about it. I was on levothroid for 1 month or so following surgery and asked my ENT surgeon to try me on brand synthroid to see if it may help my symptoms. I have been taking it now for 4 weeks without any changes or improevments. I have not had any voice problems at all, however I do swallow a little differently than I used to, but it is never a bother to me. I don't relate the systoms to anxiety or stress. I am sad and very boggled though that I have these health problems now, which I had never had before surgery. I have been told by my surgeon that everything is fine according to his exam. The surgeon has scoped me 2 times since my surgery and tells me everything is normal. However, I know that it is definitely not. I should add that I am a nurse myself, so I do have an idea when something is not right. I know what my body is feeling more than anyone else too. I feel like my surgeon is not taking my symptoms seriously enough and that maybe has no clue what could be going on and feel like I am getting no answers or relief meanwhile. My surgeon is now sending me on to a pulmonary specialist and has orderes a CT Scan of my neck and chest. Hopefully this will bring some answers and direction. Is anyone else having these symptoms or anyone gone through this that may be able to tell me any answers or share their experiences which might be similar?
Sal
So the doc did an EKG on me today, seemed normal. He tested my peak flow in case asthma was developing and presecribed me an albuterol inhaler in case I wanted to fill it. I also made an appointment to see a therapist because the anxiety of dealing with everything might be contributing to chest tightness. It's extremely frustrating to know when things don't seem to be normal, to try to be patient with the healing process, and to not get any clear answers at all.
I myself would love some advice but the only thing I can offer is don't feel bad bugging your docs and getting second opinions and asking friends of friends in the medical field. It's tough because I am finding that there is not one person who can look at all of me an help me understand what is going on inside. I've been told that this kind of care doesn't exist. Docs know us in pieces so it's important that we educate ourselves and make sure we get the answers we are looking for but not drive ourselves crazy in the process.
mologist now also. I have had a ct scan of my chest area to find I have lung scarring. But I have the same tightness, short or breath, coughing all the time since I had the surgery. I am needing help badly. If you find out please let me know. By the way my thryoid surgery was 5/07 and I also experience hypocalcemia.
I am in week 3, and it is better.
I was surprised that a hike with my boyfriend literally seemed to open my lungs. I was scared to go, as I didn't know how my body would react. I thought I could have something akin to an asthmatic attack. However, I was surprised. The hike was all uphill, through trees, etc, for about an hour. I couldn't walk and talk, and I definitely felt out of breath at times and needed to stop. However, if I relaxed and just kept walking, I was ok...I pushed myself, and was surprised to see that I actually seem to have less of the symptoms this week.
I can't recommend this for everyone, but it seemed to help a bit.
I also tried taking some calcium and having a nap when this happened...
Otherwise, I also have a strange swollowing (which I hope goes away??) and moments where I am WAY hotter than other people.
Just wanted to post that I am still suffering with the above symptoms I posted 1/2 years ago without any answers from any doctors. I am only 28 years old, so I have a long life ahead of me and this is incredibly debilitating for me.
I have now decided to get second opinions, as my symptoms not only have not gone away after all of this time since my surgery, but they are in fact worsening it seems. Going to see another ENT and a new Endocrinologist as well.
Since the above post, I did find out that I had a non recurrent laryngeal nerve that was discovered during my surgery. I understand this is a rare finding during surgery and that I had a difficult goiter to surgically excise. I also found out that one of parathyroid glands was also icedently removed during my total thyroidectomy. My surgeon was not the one who informed me of this news either. So, I do encourage you to all to obtain all of your records and study them carefully. Ask others and seek further medical opinions, if you are left without help. YOU ARE LIKELY NOT DEPRESSED OR CRAZY....SO DON"T SETTLE AT THAT.
SOmething I think I forgot to mention in my original post.....I did also have low calcium after my surgery and ended up staying in the hospital for 3 days after my surgery for that. The only symptom I ever noticed from it , that the doctors seemed to actually agree with me about ,was the numbness feeling I was having around my lips and chin.
My shortness of breath increases significantly whenever I get laryngitis or a sore throats or sinus problems too. I dread that when it comes, because I have the worst time breathing when that is added to what I've already got happening in my airway.
I now also have low vitamin D level and have been started on presciption vitamin D once per week.
I do not get good sleep these days either, so I am having asleep study performed next week. I wake up feeling like I've not even slept. We will see what this may uncover for me. I do hpe it will shead so answers.
I am also in hopes that the new endocrine doctor I will see soon , will be open to trying me on something other than synthroid, which may be what causes me this awful shortness of breath and tightness in my throat. My promary docotr thinks I might should be on Armour thyroid medicine instead.
My prayers are always going for anyone who suffers these similar or same problems after thyroid surgery. It is not fair and difficult to live with.
Please continue to share your thoughts and experiences too, maybe we can help each other find answers.
Keep your chins up,
LJ
Ft Worth, Texas
The down side to this is I was doing better when I was smoking and before the surgery. Everything else is good I am not sure what is going on with the shortness of breath. Thank all of you at least I know I am not crazy.
God Bless