Papillary thyroid carcinoma: Diffuse sclerosing variant

Hi,
It sounds like you were very lucky to have stayed on top of this situation. I am not familiar with your diagnosis, however after a thyroidectomy, I assume you will be starting medication. Some people start taking medication and everything falls into place and they start to feel good, however other people seem to take awhile to get the right medication and the best dose.

In my opinion, you might start out with keeping a symptom log….with your thyroid blood tests, medication, dose; and any symptoms you are having. Your thyroid numbers change due to stress, sickness, seasonal allergies, etc, so you can expect some variations between tests. Just so you know, your bloodtests are only one part of measuring if the medication and dose is right for you…..you can have good blood tests but feel terrible due to side effects….always consider both areas.

It helps to watch for trends that might be related to your medication or your dose. Some side effects are subtle but can interfere with quality of life. I was on one medication that gave me a lot of side effects including VERY bad leg cramps throughout the day and night. My blood tests were all in the normal range and I was having terrible side effects so I had to switch medications.

Unfortunately, after a lobectomy with a diagnosis of Hurthle Cell Carcinoma I am having a very difficult time getting regulated on medications, so keeping the symptom logs has helped with making decisions. What is now becoming very obvious for my situation is that the medications that I had started out with were much too high of a dose. Even when the dose was lowered, it was still much too high. It is a bit tricky figuring out how to fix the issues since issues from taking too low of a dose can often be the same as the issues associated from too high of a dose……the increases to my doses were causing a lot more problems. I am currently on a VERY, VERY low dose of Tirosint (every other day) and I am hopeful that we are heading in the right direction.
Good Luck!

I had the same variant that you have 20 years ago it is quite rare and it is quite aggressive but the bottom line is you have a good doctor it sounds to me like he’s really on the right track follow the doctor take one step at a time and you will be fine! I wish you the very very best luck!!!❤️

This is message number two I just would like you to know that if you have any questions at all leave an email for me anytime at all and I would be happy to answer your questions even though I had your cancer 20 years ago I could remember a lot of bout it a lot but as I said to you before you are going to be fine because you’re following the right things to do!!! wishing you a very very very best going forward!!!❤️

@elda92, you were smart to prioritize your health and catch this early. I hope you saw the helpful replies from @lindaadele and @koh.

Elda, have you met with the endocrinologist yet or is the appointment coming up? How are you doing?

This is comment number three as you know I also had the same exact variant that you had 20 years ago I went through many of the things that you’re going through and I’m sure now they’re doing newer things. I had a right and left neck dissection which also showed cancer in eight out of my 24 lymph nodes. At that time they used radioactive iodine treatment and I think I had about 150 mCi. I follow up with my endocrinologist years later to check how things are going. Each person is different and acts differently to different medication’s. Please don’t give up there’s a lot of stuff you have to go through when you have thyroid cancer it’s one day at a time and it’s absolutely no fun it’s so many things you have to do that it’s from me it was completely overwhelming 100% woman overwhelming but I got through it. I wish you the very very best going forward. If you feel do you like to try a different endocrinologist out no problem there. What happened to me as I really didn’t like the endocrinologist that I had so I looked around and I found one that I liked eventually. I wish you the very very very best!!! good luck to you!!!❤️❤️❤️

Hello everyone,

I would like to sincerely thank you all for your comments, recommendations, and for sharing your personal experiences with me. I truly appreciate it from the bottom of my heart, and I apologize for my delayed response.

A few days ago, I lost my father to CNS non-Hodgkin lymphoma, and this has been an incredibly difficult time for me emotionally, especially while also recovering from surgery. Yesterday, I had an appointment with my endocrinologist, who recommended that I should proceed with radioactive iodine therapy in about six weeks.

I genuinely hope that all of you are doing well. Thank you again for your kindness and support.

@elda92 I am very very sorry to hear about your father!!! if you need any questions answered going forward please send me an email and I’ll be happy to give you my experience with all of these situation’s!!! it was 20 years ago for me that I had your thyroid cancer but I feel like it was yesterday I remember almost everything just like it was yesterday. I will be happy to answer any questions that you have about your thyroid cancer.