Life after total thyroidectomy after papillary cancer

@selliott, it sounds like your thyroid levels might not be right for you. Have you seen an endocrinologist?

An endo who listens to you is so important. I too am having many issues related to starting levothyroxine 6 weeks ago- depression, anxiety, bone pain, muscle pain, rapid heartbeat..... I got my bloodwork, and initially they were going to make a minor adjustment to my med, , but the Dr called me, listened, and then decided to lower my dose across the board. I am praying it makes me feel better. Maybe switch endos?????

completely agree with Terri. find a new, caring, compassionate Endocrinologist. they do exist.
We interviewed 4 surgeons and three endocrinologists before proceeding with thyroidectomy.

@colleenyoung , yes, I have had 3 endos. This is my third. He does not listen to any concerns.
When my T4 levels went from point 24 to 1.76, he asked me what happened. Well, this has been happening since June-July 2019. I take it the same time each day. I don't eat or drink for an hour and do not take any other meds until 4 hours after the Tirosint. I am to the point that at the last 2 visits, I told him I really didn't care about anything associated with the TSH levels. He said, not caring is a good thing. I have been on Levo, brand Synthroid and brand Tirosint, all different strengths. I haven't been back to him since September. He does not listen. He is worse than the first 2 I had seen. I'm not a difficult patient, I ask questions. It is my health, I know what I feel, and my body is off. The only explanation I get is your levels are fine or once your levels are right, all of those symptoms will go away. Well, here I am. I respect the medical professionals however, you cannot throw a text book at everyone and put them in a box. I can't remember what the specialty is called, something like a naturalist ? Homeopathic? Anyway, has anyone had success with a different specialty? I need my yearly ultrasounds and to stay suppressed. The last T4 level at the endos office was . 12 in September 2022 and now per a family doc, it is 7.63. I'm on Tirosint 86mcg. I'll begrudgingly go back to Dr Personality but need someone who does not put me in a box and will try to help. The memory and brainfog is embarrassing. Thanks for listening.

Hi All! In 2021 (48 yrs), I had a mini stroke in May, which the doctors were still trying to determine. (Some docs doubted it to be one type of Migraine.) And in the process of those findings, noticed the swollen nodules. So, I had an ultrasound done in July and FNA done in September 2021, while I was going through the pain in my throat which ran through my right ear. It came out to be Follicular neoplasm. So, the ENT specialist advised me to get lobectomy done. My right lobe and isthmus were taken out. It was in this October surgery they confirmed that I did have cancer on the right side. So they asked me for TT. In Nov, I got it done. I have been having my ups and downs - moods swings, gaining weight, hair thinning, fatigue, cramps in chest, muscle pain, reduced Vit D, heat/cold intolerance. I am taking levothyroxine which is now increased from 50-100-130 to now 150 but I am still feeling pain in my throat, pain running to left ear now, numbness in ear (similar symptoms to when they had discovered cancer last time), fatigued on and off. This feeling, few months ago, came and went away, but it is back now. My doc has asked me to do a thyroglobulin and TSH check again in 2 weeks. I also feel pain in some spots in my chest. And am having slight trouble breathing (my nose is blocked since over a month also) and I do get phlegm occasionally. I am wondering if there is a chance that cancer is back in my throat.

Hi Prags,
This is sounds so concerning! Aside from the stroke, I am experiencing similar symptoms (Right Lobectomy and isthmus-ectomy in July 2022). I was diagnosed with Hurthle cell Carcinoma and am trying to get regulated on Synthroid too….it is a very weird balancing act because the issues seem to come and go for unknown reasons! Although I never really had allergies, I realize the allergy season could be adding to the symptoms….its hard to tease out normal issues with “signs of cancer.”
I am finding that the thyroid really is a tricky organ and Synthroid dosages are VERY tricky! When I was on higher doses of Synthroid I felt terrible! My doctor at the time seemed to think I should keep increasing my dose even when my TSH was low (50mcg 5x per week and 75 mcg 2x per week). I had to change endocrinologist due to the doctor not listening to me…..every time I took the increased dose I felt very bad for a few days. The new doctor lowered the dose again (50 mcg) and he is trying to see if I can keep my TSH level in the same range as it was before I was diagnosed (I did not have any issues with my thyroid functioning….I just had a BIG nodule)….I just started this so we will see.
So far, it has been difficult. Although I feel better than I did on the higher dose (a lot of the extreme symptoms are gone i.e., nausea, insomnia, and extreme sweating.), I still have symptoms similar to the ones you are describing, so I am concerned it is cancer again. It is hard to know what is related to cancer, side effects of Synthroid or another normal issue (Allergy, cold, reflux, etc.)
One thing that could be contributing to your symptoms is reflux. I have a history of stomach issues and the reflux is worse since I had the surgery…..I assume the big nodule in my thyroid was holding back some of the reflux from traveling as far up into my throat and nasal passages (haha). Coughs, throat pain, nose congestion, chest pain can all be associated with stomach issues and reflux, so don’t worry. It can also be associated with allergies.

I am concerned that my symptoms might be the return of cancer too, however I thought I would share some of the information that I have experienced in case it helps you. I am hopeful that your tests go well.
Good Luck!

Hi,
All of those different types of thyroid medications are very different. If you find a good endocrinologist they'll help you with that. One thing that might be affecting your levels and how you feel is taking Tirosint. That is natural thyroid hormone from pigs. It can work great for some people, but it can have very varying amounts of thyroid in it. For a variety of reasons. That then of course makes your thyroid levels fluctuate, and makes you feel like crap. But it works for some people! Level thyroxine is the manufactured t4, and that works great for other people and is pretty stable. A lot of people need t3 on top of t4, especially if part or all of their thyroid has been removed. That's what I needed. So I take t4, levothyroxine, and a little bit of t3, cytomel.
It can take a long time and a lot of adjusting, but an endocrinologist who understands the differences between these and is willing to try things will be very helpful to you.

@prags, how are you doing? Did you have further testing to confirm or rule out a possible recurrence? Thinking of you.

Hi @koh how big was your nodule?

My nodule was 5.5 in the right lobe.