Thyroid Cancer Group: Introduce yourself and connect with others

Welcome @gamerguy. Feel free to pull up a virtual chair and join our circle. Tell us a bit about you and your journey with thyroid cancer.

@maureenelizabeth, interesting timing to take your levothyroxine at 2 am, when you wake up. Do you find that reduces dealing with side effects?

@daroca I hope your surgery went well. Last April I had a total thyroidectomy and lymph nodes removed due to papillary thyroid cancer. It was a very scary time. As far as the surgery itself, it went well with no complications. It took a little time for the parathyroids to get going again, so lots of calcium was on the menu. It took until August to get my TSH to the level my oncologist wanted which is 0. Now it has stayed at 0 ever since. I take the levothyroxine in the night when I wake up, usually around 2:00 am. I didn’t notice any huge side effects, some hair loss, my emotions were all over the board for a bit, I was hot all the time. These have all gotten better, I have all kinds of fuzzy new hairs and I’m not a bag to my husband anymore;) I’m still hot but I think that’s age related...I’m 54. I see my oncologist every 3 months for follow up, I still am always afraid there’s going to be bad news when I go, but I told myself the next appointment in April, if it’s all good I’m going to stop worrying and let the fear go. We’ll see how that goes. I hope you are healing and doing well. I’m here to help if you have any questions.

@daroca, checking in. I can imagine that you were nervous going into this surgery. How did it go? Don't feel obliged to answer that if you're not ready. Just know that I'm thinking about you.

@maureenelizabeth, it's been less than a year since you had a total thyroidectomy and lymph nodes removed. Any tips post surgery to offer Daroca?

I also want to take a minute to welcome new members, @michelleaustin and @mimi50. Will you share your thyroid cancer story? What type do you have? How are you doing today?

Hi. I've been diagnosed with papillary thyroid cancer that has invaded my trachea. It was found by way of checking something else. I was hoarse for a long time with a weird cough and then started coughing up blood. When biopsied there were thyroid cancer cells in my trachea. That's what lead the dr to check my thyroid. Tomorrow I will undergo having my thyroid, lymph nodes and a section of my trachea removed in Mayo Clinic Phoenix. I've had quite a few surgeries in my 66 years but none of them made me as nervous as this one.

Thank you! I was diagnosed with papillary thyroid cancer in March 2020. I had severe collar bone pain for a year previous, I was seeing a chiropractor for the collar bone pain and he recommended I have a MRI. The MRI results showed lesions on my left thyroid lobe and left axillary and subclavicular adenopathy. I had a total thyroidectomy and 12 lymph nodes removed. I am on 175mcg levothyroxine. In October 2020 I was diagnosed with Lupus. I have a strong family history of lupus, my mother, grandmother, mothers sisters, and numerous female cousins. I’m being treated with plaquenil and meloxicam. I’ve tolerated all medications well and am feeling better than I have in years. I see my oncologist every 3 months.

Welcome new members @daroca @maureenelizabeth @daddarios58 and @christys. Pull up a chair and join the virtual circle. When were you diagnosed with thyroid cancer and what type do you have? How are you doing today?

I got the first Thyrogen injection when they first came out. Had a few more as the years went on. Never had a reaction. My Dr told me if I didn’t have the new injection , it would feel like you were a slug. I really feel for you to have to go thru that.

When I started the Thyrogen injections it was like having the flu, then after the second one I actually passed out, and they couldn't get a blood pressure and they would not let me get the 3rd or the radiation iodine treatment I was scheduled for. Said if my numbers change they will figure out how to get me the treatment. So this year when the wbs time came, they took me off the meds, blood pressure dropped very low, heart palpitations, very lethargic so spent a lot of time laying around and sleeping, very fatigued and had a hard time concentrating or keeping track of my thoughts. To bring up my blood pressure they did give me some medication and it came up to 70/60.

@sophia07, I'm bumping this discussion back up to see if fellow members have experienced low blood pressure either as a reaction to Thyrogen injections or while off thyroid meds. That must be disconcerting to have to deal with for 4-8 weeks. What symptoms do you experience?

For my yearly wbs, I have to go off thyroid meds, and do low iodine diet for 4-8 weeks, my body has reacted to the Thyrogen injections so we go "old school". Does any one else experience severely low blood pressure with Thyrogen injections or going off thyroid medication? My blood pressure drops to 60/40 at best when I go off medication or when they gave me the injections, this year they put me on medication to bring up the pressures and that was better (70/60), wondering if others have a similar reaction? My doctor said she isn't sure why my body reacts that way but would like to hear others stories. Thanks for sharing your knowledge.