Pap thyroid cancer removal and balancing

Oh my goodness, can I relate to your issues!!! After a partial thyroidectomy July 2022) and a diagnosis of Hurthle Cell Carcinoma and Hashimoto’s thyroiditis, I have been dealing with the horrible side effects of thyroid medicines. My doctors have lowered the dose, raised the dose and changed the medicine, but the side effects kept coming back. My numbers have usually stayed in the normal range, so finding an endocrinologist outside the cancer hospital, who will listen to the side effects issues, has been challenging. Terrible hip and back pain, joint pain, insomnia, sweating, brain fog, shortness of breath, leg cramps, eye pressure, weight gain, indigestion, nausea, dizziness, etc…..it has been very challenging! I never had a “thyroid issue” that made me need medicine until the surgery and I received the diagnoses.

My doctor at the cancer hospital has been very good at listening to the symptoms and has been trying to help me find a medicine and dosage that my body tolerates….recently the side effects seemed to be increasing and I could not take the pain anymore. On one medication change, my side effects went away for about 10 days, however then they started creeping back…..I have been to rheumatologist, pulmonologist and allergist to rule out other possible causes but so far nothing has been found. The doctor thought I could try stopping the medicine for a little while to see how things go and try to identify which issues might be related to thyroid and which might be related to medicine side effects. Since I have half a thyroid, there is a possibility that I won’t need medicine now, however if my numbers/symtoms are not good, we are going to try Tirosint at the lowest possible dose for the fewest days and work from there. I had two separate doctors try Tirosint and I had an extreme negative reaction where I thought I was having a stroke! However, in hindsight, and a lot of reading, they changed my Synthroid to Tirosint at the same dosage so I think it was just way too strong.

The side effects are brutal! However my last medicine was Unithroid 50mcg 6x per week. When I have dosage and/or medication changes, it did not take long for me to feel a difference so when the results were really bad, I could get some relief shortly after making a change. In my opinion, waiting 3 months feeling miserable is way too long. When possible, I waited the 6 weeks for the changes to level off in the bloodwork, however waiting 8-10 weeks was not an option.

From what I have read, Tirosint does not have any fillers so the medicine tends to be much stronger. You might be on too high of a dose so you are getting the side effects. Maybe you can ask your doctor to decrease the dose (take it one less day) and see which way the side effects go. I have been amazed at the difference with small changes in the amount of medication and I really think my extreme reaction to Tirosint was because the dosage was way too high. I have been off my medicine for 8 days and feel a lot better than I had. Many of my side effects have improved, even though I do not know if it will last long, it is a great reprieve. I am hopeful that my half a thyroid is able to work well enough, however time will tell.

I have found that it was easier to get the doctors to listen when I separated the issue into two areas….bloodtest levels and how I feel….”my bloodtest levels are all normal but I have very bad side effects.” Many doctors seem to focus on blood test results and ignore the side effects of how you feel. If I kept the two areas separate in the conversation, I seemed to be able to get them to listen better and work on changes. In my opinion, they seem to be having you wait a very long time in between bloodtests. If you are having side effects from too high of a dose, you feel a difference as soon as it is reduced; it takes the 6 weeks to have blood levels show a difference (if they are going to have a change), but side effects improve fairly quickly.
It is soooo challenging to get regulated on thyroid medications. The only reason I can try stopping medicine is because I still have half of a thyroid that works. If you had a complete thyroidectomy, you can’t do a complete stop, however lowering the dose should be an option. Good luck!

@koh thank you for responding. It helps to know the struggle is real for other people too. I never could have imagined how hard getting thyroid replacement would be. Having cancer is awful but this process in my opinion, is ridiculous and could be worse. I feel like I’m having a nervous breakdown trying to constantly manage side effects from medication. Praying for you and others dealing with this mess. Going to suggest lower med again and see what happens. Thx.

@julesjpm definitely keep asking to lower your dose….you might want to ask in the affirmative manner ( Instead of asking tell them… “we need to lower my dose to see if my side effects improve.”) Taking too high of a dose has health implications too, so it seems like something to try. I started tracking my side effects for awhile so I could see trends…. It really helped. Good luck!