Greetings all! Just had scans and am 1 year NED (again but I’ll so happily take it!)
- May 21, 2021 at 3:36 pm
However, blood work shows a high TSH (7.8), though my other thyroid tests (such as T4) are normal. Since my one dose of ipi/nivo, I’ve lost adrenal function/ability to create cortisol and am on a permanent maintenance dose of hydrocortisone to replace it. Could the ipi/nivo also have affected my thyroid or could it be related to my lack of natural cortisol? I don’t have any symptoms of low thyroid so am quite puzzled.
Very best to all of you amazing survivors AND stellar caretakers,
- May 21, 2021 at 9:13 pm
It is definitely not uncommon for immunotherapy to affect the thyroid. I received Nivolumab monotherapy. My thyroid before extremely overactive after the first treatment (hyperthyroid). After about a month, my thyroid basically stopped working and I became hypothyroid. My TSH shot up to about 80. I started on synthroid (levothyroxine). Eventually my TSH came back in range with a dose of 200 mcg of synthroid. I’ve been off of nivolumab for 6 months now, so it appears by thyroid was permanently damaged by the immunotherapy.
Rick from NCParticipantHi, Cindy,
- May 27, 2021 at 9:53 am
Not sure how much it relates, but back in 1992 when I received IL-2 for my melanoma, I ended up hypothyroid and went on Synthroid for 1-2 years as I recall. My thyroid gradually recovered, and I’ve been euthyroid ever since.
Best wishes, Rick
Chris RParticipantI just finished 3 of the 4 cycles of ipi/nivo. I had to stop mainly due to colitis. More to the point, it appears it has impacted my Thyroid as well. I go to the endocrinologist today. I will likely have to be on a thyroid medication the rest of my life. Not ideal, but lets hope I have to take that medication for a very long time. 🙂
- June 9, 2022 at 6:42 am
I am to understand 20M people have to deal with thyroid issues, so we are not alone.
Sarah L.ParticipantHello, after being on Yervoy and Opdivo I started seeing significant changes in my thyroid numbers. Eventually I was diagnosed with Hypophysitis. This was identified as an adverse effect of the immunotherapy drugs. I am currently only on Opdivo.
- June 22, 2022 at 9:03 pm
My last CT scan indicated my thyroid has completely atrophied. My TSH remains below 0.
IMPORTANT: I recommend you develop a very good relationship with your Endocrinologist and that there is a proactive open dialogue between your Endo. and your Oncologist.
There are other factors to measure which track changes in Thyroid, for example ACTH and Cortisol levels, T4. All these changes must be viewed in entirety.
When I have lab work done prior to my monthly infusions they measure TSH but not ACTH. (That is done by the Endocrinologist.)It takes persistence to stay on top of the bloodwork trends, ask questions and get someone to do something about it as needed. I keep a graph of all indicators.
In retrospect I would have been more diligent EARLIER in requesting an endocrinologist who specifically had a track record of working closely with an oncologist. Some cancer centers consider this a holistic approach. But in my case, I have have had to drive this.
Note: You know best how you are feeling. I suggest adjusting your Levothroxene/ Synthroid or other Thyroid meds until you find a new normal you, ha! and your numbers appear steady. By the way, I would encourage you to try to schedule more frequent appointments with your Endocrinologist. Mine wants to meet every 4 months! This is a LONG time interval when you have cancer, and are undergoing so many changes in your body.
I hope this information is helpful. It is hard enough dealing with having cancer but the unexpected addition of adverse infusion-related side effects and associated thyroid issues requires personal resolve and dedication to find a solution. I do feel better now. So hang in there and sort it out.
Best of success to you.
At the base of the neck, just below Adam’s apple, is the thyroid, a tiny, butterfly-shaped gland. Thyroxine (T-4) and triiodothyronine are the two primary hormones produced by the thyroid gland (T-3). Every cell in the body is influenced by these hormones. They support how quickly the body consumes carbohydrates and lipids.
- March 23, 2023 at 3:58 am
Thyroid disorders refer to a group of medical conditions that affect the thyroid gland, a small butterfly-shaped gland located in the neck. This gland produces hormones that regulate various bodily functions, including metabolism, heart rate, and body temperature. When the thyroid gland produces too much or too little thyroid hormone, it can lead to a range of symptoms and health problems.
- March 28, 2023 at 7:26 am
Dr Mayank Somani is a renowned thyroid specialist in Lucknow, India. With his extensive knowledge and expertise in the field of endocrinology, he has earned a reputation as one of the best thyroid specialists in the region. He is dedicated to providing personalized and compassionate care to his patients with thyroid disorders, and he uses the latest diagnostic tools and treatment options to help them manage their condition effectively. Dr Somani is committed to educating his patients about their thyroid disorder, empowering them to take an active role in their care and improving their overall quality of life.
Accoding to Thyroid specialist in Lucknow – thyroid disorders refer to a group of medical conditions that affect the thyroid gland, a small butterfly-shaped gland located in the neck. This gland produces hormones that regulate various bodily functions, including metabolism, heart rate, and body temperature. When the thyroid gland produces too much or too little thyroid hormone, it can lead to a range of symptoms and health problems.
- March 28, 2023 at 7:29 am
- You must be logged in to reply to this topic.