Does anyone have any questions about papillary thyroid cancer?

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Hello!
I was diagnosed with oncycitic thyroid cancer in 2024. Had a total thyroid come and RAI treatment.
I was taking Levothyroxine but had GI issues and headaches and fatigue.
Have not felt good since my surgery. Has anybody else had issues like this?
I am considering trying brand name Synthroid to see if it helps. Any feedback??

@bellarose17 I don’t have thyroid cancer but I have been taking Synthroid for many years now, for my hypothyroidism. Recently the pharmacist switched me to a generic (a version of Synthroid is available in generic formulation now) as required by the government whenever one is created. I couldn’t tolerate and had to switch back to the brand name Synthroid.

@rashida Thank you so much for sharing.

@bellarose17 Hi! I was diagnosed with Hurthle cell carcinoma in 2022 when I had a lobectomy to remove a very large nodule. Prior to surgery I did not have any issues with my thyroid and was not on any medication. Shortly after surgery, I started having symptoms of hypothyroidism and started medication….it has been a very difficult road to get acclimated due to the negative side effects (or thyroid issues due to dosage).

I have tried several medications and had the dosages changed to try and eliminate the negative side effects. I tried Synthroid, Tirosint, Tirosint liquid, Levoxyl and recently changed to Unithroid. The side effects from the medication have ranged from extreme issues to just feeling badly with some pain. One of my issues was a bad pain in my hip and back which I kept thinking was from lifting my mother. I had the pain for over a year and it was always painful ( I looked like a 90 year old when I tried to stand up and walk)…..sometimes a lot worse and sometimes a bit better, but always there. During a recent medication change, the pain went away within the first few days! As I stabilized on the new medication the pain seemed like it was creeping back in, so the doctor increased my dose.

What seems to have worked for me, is to keep track of my symptoms with each dosage of medication so you can see trends. At first, I didn’t feel well on some medications but did not realize that it might be the side effects of the medication until dosages were changed and/or medication was changed. After one extreme reaction, I had to stop taking the medication until I saw my doctor and I noticed how much better I started to feel….until the low thyroid issues started again. In my opinion, it is worth trying different medications and tracking any and all side effects to see what improves or gets worse when dosages are changed.

It is a tricky balance since the thyroid issues are affected by stress and outside factors, however the weakness, shortness of breath, nausea, lack of concentration, memory issues, chest pains and fatigue could be side effects from the medication. I will mention that my T4 and TSH was always in the normal range, I just felt terrible and had extreme reactions.

The doctor at the cancer hospital was working with me to try and get my T4 and TSH numbers closer to my numbers before surgery and I found that this seemed to work well for reducing my side effects on the medication. I had been on Levoxyl for quite awhile with side effects but the side effects seemed to build up and I was having shortness of breath and a lot of pain so I was changed to Unithroid. I am hopeful that this will work without the side effects increasing.

Finding the right dosage is VERY tricky for some people; I have always had issues with side effects from medications as did my father and Grandmother, so I tend to think it is just a bit more work to find a medication and dose that agrees with my system. Definitely, look into changing your medication and see if things improve. I found very noticeable changes within days of changing medications and/or dosages; waiting 6 weeks is necessary for changes in bloodwork however the issues can change and be felt fairly quickly.

Since a lot of side effects can be “something else” it is hard to know if the medication is influencing something, however if slight changes in dose changes the issue, I tend to believe this is the cause of the issues. I have had doctors who said it was something else and sent me to other doctors (rheumatologist, allergist, pulmonologist), however further testing did not reveal anything else…..however the change in dosage and or medication, brought changes to my symptoms. It is definitely tricky….but worth changing dosages or medications until you find one where you feel well. Good luck!

Wow I am so sorry you’re having such problems with your medication for your thyroid. I can understand as I have problems with many many of my medication’s some of which I have no problems others I have super Duper problems I never know. Now I noticed that you have her cell cell thyroid cancer which is a variant of papillary thyroid cancer. I am just wondering if maybe a second opinion from another endocrinologist that is very familiar with your type of papillary thyroid cancer. I’m thinking what do you have to lose can’t hurt to get a second opinion. Some situation‘s are very very difficult to figure out and it has nothing to do with the doctor. Each of us is so so different and I understand that because I have so many problems with medication’s. And wishing you all of the best going forward I can understand your situation very very well.

Thank you so much for sharing! It helps!

@rashida what type of side effects were you experiencing?

@bellarose17 waking up with nausea, stomach cramps in the morning followed by large bowel movement, and right after that, heaving (since stomach is empty first thing in the morning) and throwing up bile. Stomach cramps during the day too.

I cannot remember the name of the generic brand I was given. I know the generic name is Levothyroxine, but the company making the generic escapes my mind. I returned the bottle to the pharmacy.

@rashida those are the same symptoms I was having on Levothyroxine. I have started on Synthroid 3 days ago and already have some improvement. Did you have any insomnia?