Graves Disease and Grave Eye Disease Update

After six months of trial and error, my endocrinologist agreed that we needed to try something new.

She proposed radioactive iodine treatment, but I ruled that out. While we have general data on the success of that treatment (90%), we also know it does not work for some people, and there are complications, especially for the eyes. I have three cousins who tried radioactive iodine treatment and ultimately ended up with surgery. I also learned from my mom that hyperthyroidism runs on her side of the family. She informed me that the entire McLaren family (which is my grandmother's family from Carriacou) has thyroid problems. It has affected many of the grandkids. I am so lucky.

I initially said yes to doing radioactive iodine treatment, which, because of possible compromise of vision, required a trip to my ophthalmologist. He did some tests and then confirmed to me that I had two related diseases, Graves Disease and Graves Eye Disease. He also advised me that neither radioactive iodine treatment nor a thyroidectomy would address GED. GED has to be treated separately, and my options were limited. The proptosis in my eyes is worsening, but until I recover from the thyroidectomy, there is nothing to be done.


Yesterday, I met with a surgeon at the Rutgers Cancer Institute of New Jersey in New Brunswick to discuss the expectations and risks of a thyroidectomy. Surgery is scheduled for the second week of December.

Am I scared? Yes. Absolutely. There is a risk of infection and bleeding. There is a risk of nerve damage leading to changes in speech.

However, the risk of untreated or poorly treated Graves Disease is higher. None of what I am experiencing right now is pleasant. Bhavna reminds me that the silver lining is that this chapter of my life will be in the past in a few weeks. But in the meantime, I'm shivering in the cold rain.

Waxes and wanes

Ugh! One of the challenges I have with Grave’s disease is with the symptoms of the disease. The swelling in my neck and eyes caused by inflammation of the tissue. This is caused by antibodies attacking the tissues. The level of antibodies rises and falls causing the symptoms to wax and wane. Today has been a difficult day. My neck is swollen. It’s difficult to swallow or talk. The tissues of my eyes are so inflamed that the pressure is causing my eyes to water incessantly. There is nothing I can do about this. Nothing that alleviates the symptoms.

Wax On

How are you feeling? The socially exceptable response is “Ok”. Even when I’m not “Ok”. Because with two chorionic progressive autoimmune diseases, I am by definition, always sick. Unless of course ... no one really cares about the answer. Or I redefine normal to the state of being one is in when living with two chronic progressive diseases. So maybe today, I’m just “Ok”.

I’m having another wonderful day with the effects of Graves Disease. This morning, I woke up feeling bloated. When I look in the mirror, I see pregnant man. I don’t remember when I went to bed last night -- sometime after the end of Fear the Walking Dead. I woke up around 5AM and could not get back to sleep. I woke up feeling anxious.

I tried the meditation app this morning but it did not help with symptoms and only alleviated my anxiety for a few minutes. I guess three minutes is better than none.

I drank 887ml of water this morning. I drank about 1892mL per day over the weekend. It seemed to help with symptoms especially with my eyes. However, this morning I feel pressure behind my eyes; again. To my co-workers I must look like shit.

My endocronologist says the disease waxes and wanes but it seems to be “waxing” right now.