Can you cure Graves? -The Rush for Permanent Solutions

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!


Our Friend TED (Thyroid Eye Disease)

What is TED? It stands for Thyroid Eye Disease, also known as Graves’ Eye Disease. It usually happens more frequently to people who have Graves’ disease antibodies, but it can also attack people with Hashitoxicosis, hypothyroidism and Hashimoto’s Disease. So what is it? It’s defined as an auto-immune disease of the eye socket and muscles surrounding the eye. Simple definition right? Unfortunately for the people who suffer from it, it can go from annoying to excruciating in effects.

In the early stages, it can be an irritation. Starting out feeling like there is something in the eye making it irritated and red. The tear ducts may cause the eyes to be either “wet” or “dry”, either too much tears lubricating the eye or too little, and this can happen near the same time to the same person. The immune system may make the eyelids swell up and start to look like there are really bad bags under the eyes, or major puffiness.Extra spots in the eye or minor vision problems may come and go.

Next it starts to make the eyes look like they are going to pop out, like they are bulging out a little or a lot. Double vision and major blurriness shows up to make seeing difficult. Pressure starts to build making the eyes ache. The upper eyelid can retract, making the eyes look even more bulging out and make the person look startled. People also often become extremely light sensitive.

When it’s at it’s worse, it will push the eye forward due to swelling in the eye muscles. It can make the sufferer unable to properly close their eyes, which makes lubrication of the eye a problem and can have a side effect of producing a corneal ulcer. If a person has severe redness, pain in the eye, diminished ability to see, color vision becoming abnormal, get to an eye doctor who is familiar with Graves’ Eye disease or TED, this needs to be treated asap so it doesn’t cause permanent vision loss. The muscles can also start to scar leading to other issues with vision and how the eyes look to everyone else. This is when surgery to correct this may be brought up.

The inflammation period of TED can last up to 3 years. During this time most eye doctors and eye surgeons will not perform surgery as more inflammation could bring a patient right back to where they were before the surgery, to correct the eyes. Lubricants, eye lid taping at night, steroids and other medical methods are use to alleviate the worst of the issues. There has also been some evidence showing that taking Selenium 200mcg a day can halt or slow down the inflammation and damage of TED to the eyes.

If you have thyroid disease and you suspect that you may have signs of Thyroid Eye Disease (TED), consult an eye doctor or ocular surgeon, who knows how to deal with signs of thyroid eye disease. Even if you do not have signs of this, it is a good idea to get your eyes checked once a year and measured to make sure that your eyes have not changed from  year to year.