Life after total thyroidectomy after papillary cancer

Posted by Cancerbegone @cancerbegone, Jul 18, 2011

My Endo seems to think I am a nut case and will not recognize the emotional and physical issues I am suffering with since starting Synthroid. Yet, when I check on various websites, I see that there are many people who suffer from anxiety, depression, sleep issues, aches….and a whole host of physical problems as meds are adjusted. My endo keeps saying I must just be worked up about about the diagnosis of cancer! I really don’t think that is it. My cancer is very curable, and I have not suffered from these issues in the past. I just don’t know what do do. My family med doctor agrees with me, but my thyroid specialist just thinks I’m a headcase. What is your experience?

I’m sorry about your thyroid and I don’t think I have the same issue as you. I am new to the thyroid, my daughter just got diagnosed with hypothyroidism. Those were the same symptoms my daughter told the doctor so I think you have true symptoms. Hope this helps!

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I think you need to find a new endocrinologist. You need to find a doctor who respects you, who will listen to your concerns and continue to search for answers to your health issues. I had to go to an alternative doctor who was willing to try natural thyroid hormone and time released T3. He was willing to think outside the box and he definitely encouraged me to participate in my own treatment by allowing me to tweak my own dosage until I felt right. He empowered me. And he also finally figured out I had another health issue that was making me sick–hyperparathyroidism. Have you been checked for parathyroid issues? You had your entire thyroid removed–were your parathyroid glands harmed during this procedure?

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Hello…can i ask which doctor treated you at Majo? Or, if you know anything about Dr. Morris? Thank u…

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@theramosfam

Hello…can i ask which doctor treated you at Majo? Or, if you know anything about Dr. Morris? Thank u…

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No, I am sorry. I do not know dr. Morris. I am finally feeling more human, but it has taken 8 months. I hope you are faring better!

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I was diagnosed with hyperparathyroidism in May 2011. I went in for a resection of an adenoma of my right lower parathyroid. The surgeon could not identify my parathyroid on the lower right so he took out the upper right to make sure he was getting the right tissue match for what he resected. He also found I had a large papillary carcinoma tumor so then resected the whole thyroid on the right. It was a difficult surgery and I had pretty painful recovery, lost my voice and am just now getting it back to a normal status. I still cannot sing or speak in high tones. My surgeon could not find a lower left parathyroid and thinks we should not resect the left side. My oncologist, a second surgeon, and my endocrinologist all think I should have the left side resected and have the RAI treatment and scan as the tumor was multifocal and had metastasis in one lymph node. I am terrified to have the other surgery for fear of losing my voice and destroying the one remaining parathyroid. I am adjusting ‘okay’ on the synthroid but still have some issues which are difficult to assess if they are parathyroid or synthroid related. I feel lost in the crowd of the providers making opposite recommendations to me. I am in Alaska and wonder if I am getting correct recommendations from either side. Can anyone provide input? Thanks so much.

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i know it is not the same but i take Armour Thyroid…hardly any side effects…been on it for almost 3 years now…still have to get it adjusted often but i have found it worked better than the othes ones….hope this helps…

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I know this was several years ago, I hope you found the right dose of meds and life got easier. I had my Thyroidectomy 4 months ago and feel the same way. I feel like I'm going to pass out sometimes too, which is loads of fun when I'm driving. My life went from normal to hyperthyroid storm symptoms and barely being able to function, to having surgery and playing the let's adjust your meds and wait every six weeks to see if it is the right dose game. Meanwhile my slew of symptoms like brain fog, constantly between insomnia and fatigue, the hot flushes, the feeling faint, the sometimes difficulty catching my breath, just feeling off inside out, the head in the top of my head. This is my new normal and I honestly think to myself, "this is what a slow death feels like." Modern medicine in all its wonder can't seem to fix it so I can level and supplememt my absentee thyroid hormones properly. No doctor seems properly trained to recognize the symptoms and look beyond a lab report.

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@cancerbegone Sorry you are having these issues. It's hard to convince someone of side effects they can't see or which are not what they regard as typical. I would have thought that thyroid replacement hormones would take a bit of time to settle down before people found the right dose so good luck to you and hope you are listened to in future:)

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@thyroidectomyhe welcome to Connect. Getting thyroid medications adjusted properly is such a trial. I haven't had to do it myself, but I've had to accompany my aunt as she went through this. The long periods between adjustments seem interminable — and I was only on the sidelines, so I can't imagine how challenging this must be. In the grand scheme of things, four months is not a long time yet. I hope that you and your specialist find the right dose soon. When do you return for an adjustment?

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I had problems with Synthroid and Unithroid. I take Tirosint now and it has been an excellent replacement as it is the closest medication on the market to the natural Thryoid. I removed my Thyroid 2 1/2 years ago and have had no side effects at all since starting Tirosint. Ask your Endo about trying it. Good luck!

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I seem to be having a similar situation. Had thyroidectomy left lobe that was positive for Folicator and Hurdle Cell
I believe our first instinct is the one we should go with and this is certainly no different. Saw local ENT who advised surgery after FNA, went for second opinion to Duke and also to WFBH
All doctors said the same thing. Thyroid has to go if I was going to survive. My gut instincts say no way.
I should never have had the surgery which was November 26.2019. Since the surgery I feel as though I live in someone else’s body as I don’t recognize my own. Heart palpitations, BP out of control, fatigue beyond belief and rapid weight gain
I am short of breath all the time and cannot sleep
My TSH levels have increased dramatically and all the doctors want to go is wait another 6 months before doing anything. This is ridiculous. I think I know my own body better than anyone. I live in it
I don’t fit in the standard mold and quite tired of being put in a category that I do not fit in
I also have Mucinous invasive Carcinoma of the breast. Had mastectomy and reconstruction. This went off without a hitch. God bless those doctors
Now I am feeling like what was the use to go through all that just to have my body and life destroyed by the thyroid and lack of communication and understanding for my body, me. I don’t think you are a nut case, your words for if so then I am with you.
God bless

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Sorry, I meant to ask this under a different discussion.
Just joining this group. Diagnosed with papillary thyroid cancer, had thyroidectomy some 20+ years ago. Two questions, after all these years I'm just wondering if I should be using iodized or non-iodized salt? Also, I switched from synthroid brand to generic due to cost. Anyone know if this is a good thing or bad?

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So sorry to hear this. I had a total thyroidectomy in 2001 diagnosed papillary carcinoma. I have been doing well since then. I get labs yearly and as needed if not feeling well. I have a good endocrinologist. Just wondering if some of the issues you are having are because the physician needs to adjust your thyroid medicine. Hoping you can start feeling better.

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