Post Thyroid Removal Problems

Julibarnes Member Posts: 1

Hello:. My name is Julie.  After spending the whole of 2017 fighting a soft tissue Sarcoma in my right ankle.  (9 surguries in 12 months), I had a pet scan in November that showed Thyroid cancer.  It was papillary.  In February, I had the whole Thyroid removed.  I have felt like utter crap ever since.  I am taking Synthroid.  They did not get a clear margin so I start my two shots today in prep for RAI on Wednesday.  I know some folks have been kinda of happy over the isolation.  I spent all of 2017 bedridden and I am not looking forward to it at all.  I am also without an Endocrinologist yet.  There are very few in South Georgia.  The first two my surgeon sent me to, won't take me because I have Medicare even though I also have private insurance.  I am hoping someone here can help me with a few symptoms.  

1.  My legs are swelling up like balloons.  They are swelling so badly that my feet are black and blue with bruising. I was having some swelling in my right foot/ankle from the trauma of the Sarcoma and the external fixator I had to wear for 3 months but this is both legs going up past my knees. It has only occurred since the thyroid surgery. It is really bad 

2.  I am having bouts of terrible headaches.  (I woke up crying in the recovery room with a migraine.  The night nurse called me a baby and just left me like that all night. I pretty much sobbed in agony all night   When the day nurse came on, she finally took pity as ND got me a shot of something that calmed it down.  They popped me out of the hospital as soon as the headache was better.  It came back with a vengence on the hour long trip home. I had another horrible night of agony before I could get to my regular doctor.  She gave me another shot and some migraine meds.  The headaches have settled down but are still with me.

3.  At 6 weeks, my voice is OK at low/normal volume.  I cannot speak louder than that.  My voice won't work and it is painful.  I know this is common.  I am just wondering if it will ever be better than this.

4.  swallowing is hard.  Even a full of water is hard to swallow.  Anything dry or solid like a bite of meat is really hard to get down.  I know that is a usual symptom but is it normal at 6 weeks.

5.  I am not sleeping at all well.  Even taking a sleeping bill does not help.  I lay awake all night.  Very unusual for me.  I feel very tired.  I am horribly irriatible.  I gained 12 lbs in exactly 8 days while I was eating NOTHING because my throat was so sore.

6.  I have had several bad bouts of heart palpitations.  I seem to be swinging wildly from hypo to hyper thyroidism....  I just don't get what is happening to me.  

.I'd sure like to know if anybody had these type reactions.  I am anxious.  It has been a long 15 months of endless surguries that have left me mentally reeling.  Somehow I have to stop this swelling at least.  It is agonizingly painful especially on my right ankle and foot due to the Sarcoma 

Any help is appreciated.  I am lost



  • beat atc
    beat atc Member Posts: 64 Member
    edited March 2018 #2
    Don’t be lost

    Sorry that u feel so bad, give ur mind a rest! U will overcome this ! some of your issues will take time!

  • Still Surviving
    Still Surviving Member Posts: 4
    edited July 2018 #3
    Julibarnes, let me assure you

    Julibarnes, let me assure you it does get better. I was diagnosed with same in 1963 at age 6. Three surgeries in one year, RAI and hormone replacement, currently levothyroxine (generic Synthroid). I had great doctors and encrinologistss who didn’t treat me as a research project. My dosage has been stable for years with only a few tweaks along the way. I know after 55 years when something is off and needs adjustment. I get T4 and TSH tested every 6 months. Had an ultrasound 5 years ago for a new endo and all is clear. I avoid foods that interfere with levothyroxine uptake and take my levothyroxine 1 hour before breakfast for best uptake.

    it will get better and a long life is possible! I’m living proof!