Graves’ disease now possible thyroid cancer

Posted , 8 users are following.

good evening everyone, hoping someone can shed insight on this topic. Been experiencing a lot of strange symptoms, with the main one being difficult to catch my breath /SOB. i was told i had GRAVES disease and then they found a thyroid nodule that is -1.7 cm, i just had it biospied as we had to wait until my levels were normal (while taken methimazole) biospy results came back as "suspicious for papillary thyroid carcinoma" so because of this and graves my endocrinologist recommended i take my thyroid completely out, anyone else go through the same problem? if so, how was your experience with a total thyroidectomy?

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8 Replies

  • Posted

    when I was first diagnosed I had severe shortness of breathe. That symptom was the hardest for me. I can't offer any insight on having the Thyroid removed but I am sure someone in this group can. Best of luck.

    • Posted

      thank you. when you were diagnosed with what? graves disease? are u still experiencing the SoB?

    • Posted

      I was diagnosed in November 2018 with Graves My shortness of breathe did go away. I got lucky and my labs are now normal.

    • Posted

      did you do the radioactive iodine therapy? or do take methomazole long term?

  • Posted

    My cousin was diagnosed with thyroid cancer after a long period of misdiagnosis and had her thyroid surgically removed. She never did well on Levothyroxine because she always felt tired no matter what dosage she was on. She was morbidly obese and recently underwent bariatric surgery and lost about 200 lb. She had a lot of energy after that.

    I have heard that people who have thyroidectomies do better on natural thyroid hormone replacement done in a compounding pharmacy.

  • Posted

    Wow - so similar to me! I got diagnosed with Papillary Carcinoma a week ago - my nodule is 1.8 cm. My very first symptom was shortness of breath. I went to get it checked out and I got put on Singulair, an asthma medication even though I have never suffered from asthma, but it didn't help my exhaustion. After tests, I was being treated for being hypothyroid for a few months before I developed Graves Disease in February (eye problems was the catalyst here and I had flipped from hypo to hyperthyroid), had an ultrasound, biopsy and here I am, a few weeks away from a total thyroidectomy. I'm really encouraged to see other people describing being short of breath as a symptom - this has to be one of the worst symptoms I am experiencing despite exhaustion, eye problems and all. Please keep us posted on your progress!

  • Posted

    I had a total thyroiectomy a while ago and was diagnosed with graves disease I struggled with the shortness of breath and tiredness and muscle problems along with a load of other interesting symptoms but my thyroid problems came on very quick although my specialist suggested I had been hyperthyroid for quite a few years just undiagnosed and even after a year of medication it was never stable so decided best option was to have it removed but they couldn't get me stable enough with medication so I had to have radioactive iodine to kill it before having it removed but my dose wasnt right and once I had it removed my body went into a bit of thyroid shock and it was also discovered the surgeon had taken two of my parathyroid glands which can happen as they are so tiny and my thyroid was all over the place but my body went into a bit of a melt down and i was in for over a week while they sorted it all out and you can see my scar but I think its hardly noticeable now and new medication was good for a little while but even now two years on we are struggling to get my dose right I take levothyroxine 200mg once a day and I have gone up in dress size from a 10 to a 12 but have managed to keep it at that but I still suffer with the graves disease so it's not relieved those symptoms for me I still get shortness of breath and every so often palpitations with fast heart rate but it sorted other problems I was having.

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