This is a question I hear a lot online,from all over the world. People get their thyroid killed off with RAI (radioactive iodine) or thyroidectomy to remove the thyroid and their doctors tell them they are ‘cured’.
Beware any doctor that tells you that removal of your thyroid is going to ‘cure’ you of your autoimmune disease. All it does it remove the main target of the messed up immune system. You can still bear the brunt of the immune system being out of whack for the rest of your life. If you have a doctor that tells you as soon as the thyroid is removed or killed off that you are cured, run to get a new doctor.
For instance, one of the common things that happens is that the immune system also attacks the eyes (this sometimes happens in Hashimoto’s in rare cases as well). Graves’ eye disease or Thyroid Eye Disease (TED)as it’s also known, can happen with or without your thyroid being intact. It is known to be made worse in many instances when someone chooses RAI to kill off their thyroid. The RAI can actually exacerbate the eyes and make TED flare up, or get worse.
Even surgery does not always eliminate the risk for TED. There is currently no way to make sure every single thyroid cell is removed during surgery. There is some chance that some of the tissue can grow back. I am one that had RAI back in 2001, when they did the ultrasound a year later, all of the thyroid tissue was dead, no thyroid tissue living. I had another ultrasound two years ago and they detected that 1% of my thyroid had grown back. I’ve talked with several people over the years who had total thyroidectomy or partial thyroidectomy and a few years later some of it has grown back.
Now days most doctors will want you to try anti-thyroid medication first to see if they can control the thyroid levels that way. They may also advise you to change your diet to help control inflammation and antibodies. There is a small number of people who have gone that route, who have also achieved remission for months or years. Remission is where their Graves’ antibodies have all but disappeared. Other people haven’t achieved remission, but have been able to keep their disease safely under control for quite a long time, in some cases years. Most people, if they are able, will want to see if they can go this route instead of jumping right to a permanent solution of RAI or thyroidectomy.
There comes a time in many people’s treatment where anti-thyroid drugs are either not working or are causing problems with a person. When someone is unable to control their Graves’ disease with anti-thyroid drugs, it is time then to consider a permanent solution. Especially with Graves’ disease, if it becomes uncontrolled, it can cause heart problems, stroke or even thyroid storm (a deadly situation that can and has killed people). Then you need to carefully consider which option you want to take to take care of your thyroid so it can no longer overproduce thyroid hormones. This is an individual choice, as RAI is something that works better for some and surgery is a better option for others. Research both if you are at this point and weigh the pros and cons of each before making a decision.
Once your thyroid is gone, then the work will really begin. You will have to monitor your thyroid levels for the rest of your life. Even without a thyroid your levels can be still affected by medication, stress and other lifestyle choices. You will have to really start watching your body to find out what your “new normal” is going to be. New Normal being where you feel at your best post thyroid.
There is a lot of information out there for us thyroid people, even if our doctors don’t always seem to know it. Do your homework and don’t be afraid to talk to people online who have been where you are. Others can share their experiences and give you an idea of what your best options may be. Just remember the cardinal rule, if they say they can cure you, keep on going. Good luck in your thyroid journey!