Fun With Graves Disease

Well, pull up a seat, I'll tell you all about Grave's Disease. I am now unfortunately an expert. The below are the easiest explanations I have found from the National Graves' Disease Foundation and the National Institute of Health.

What is Graves' Disease?
The leading cause of hyperthyroidism, Graves' disease represents a basic defect in the immune system, causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone. Similar antibodies may also attack the tissues in the eye muscles and in the pretibial skin (the skin on the front of the lower leg).

Facts:
Graves' disease occurs in less that 1/4 of 1% of the population.
Graves' disease is more prevalent among females than males. (Of course Kevin is unique)
Graves' disease usually occurs in middle age, but also occurs in children. Kevin was 43
Graves' disease is not curable, but is a completely treatable chronic auto-immune disease

Symptoms
Fatigue - He was exhausted to the point of depression. We couldn't figure it out.

Weight Loss - he weighed 160 lbs on a six-foot-tall frame at his diagnosis. He hit 155 after radiation. Healthy weight for him is 185.

Restlessness - yes, this was difficult to tell due to his ADHD but the symptoms were different.

Tachycardia (rapid heart beat) - Kevin was at risk for a major heart attack/stroke due to his heart rate. He had a ....I can't think of the name...test to check for heart damage. THANKFULLY, he had none although they expected he would.

Changes in libido (sex drive)...Oh. My. God. We won't get into details. (:-D

Muscle weakness...yes...Graves attacks muscle mass and it took him over a year to recover the strength he lost

Heat intolerance...he was sick during the summer and he still cannot be in humid situations.

Tremors...in his hands. He still has this symptom and always will. Did you know that the tongue will tremor as well? It's a sign of Graves Disease.

Enlarged thyroid gland...his was the size of softball and it increased when he had radiation.

Heart palpitations...yes, he scared me to death at the racetrack one day. I thought we were going to have to call the ambulance.

Increased sweating...just sitting in his chair.

Blurred or double vision...and still does if he's "storming" or overly tired.

Nervousness & irritability...my easy-going husband was the moodiest I have ever seen him. They say that divorces are often a result of a Graves Disease diagnosis due to the symptoms.

Eye complaints, such as redness and swelling...he didn't have this. It's like the only symptom he didn't have.

Hair changes...another sign of Graves is no hair on your shins. Weird, huh?

Restless sleep...he had insomnia, just like me. It's not too bad now but it is an ongoing symptom.

Erratic behavior...they told us that he couldn't sign any legal documents until he was in remission.

Increased appetite...he still has this. It's an after-effect.

Distracted attention span...we couldn't tell because of the ADHD. This was one of the reasons it took so long for us to go to the doctor.

Who develops Graves' disease?
There are several elements contributing to the development of Graves' disease. There is a genetic predisposition to autoimmune disorders. His mother's side and now the nephew has Crohns, another auto-immune disorder.

Infections and stress play a part. Graves' disease may have its onset after an external stressor. In other instances, it may follow a viral infection or pregnancy.

Kevin had a bad virus one year prior to his diagnosis that landed him in bed for a week. For anyone who knows Kevin, this was inconcievable that he was that sick. This created an opportunity for the Graves Disease. Because I keep everything and am a research nerd, I was able to determine this.

Many times the exact cause of Graves' disease is simply not known.

We're "lucky" because I could figure it out.

It is not contagious, although it has been known to occur coincidentally between husbands and wives. I have to be tested every year for Graves and for the first three-four years after treatment because of my exposure to his radiation. So far, so good.

How is Graves' disease treated?
There are three standard ways of treating Graves' disease. Choice of treatment varies to some degree from country to country, and among particular physicians as well. The selection of treatment will include factors such as age, degree of illness, and personal preferences. Generally speaking, from least invasive to most invasive, the treatments include:

Anti-thyroid drugs which inhibit production or conversion of the active thyroid hormone.

Not an option, Kevin's case was too severe & had to be treated IMMEDIATELY. They considered hospitalizing him which scared the sh*t out of both of us.

Radioactive iodine (I-131), which destroys part or all of the thyroid gland and renders it incapable of overproducing thyroid hormone.

This is called "oblating the thyroid" which is a nice way of saying killing the thyroid. Kevin's was the size of a softball and was very "angry". He luckily only had one radiation treatment but we were planning for two.

Subtotal thyroidectomy, in which a surgeon removes most of the thyroid gland and renders it incapable of overproducing thyroid hormone.

If radiation didn't work, this was the next step. Thankfully the radiation did the trick because we were told the surgery is gnarly.

In all cases, lifetime follow-up laboratory studies must be done, and in almost all cases, lifetime replacement thyroid hormone must be taken.
Kevin is on meds for the rest of his life and has check-ups every six months. His doctor is conservative in her treatment and hasn't cleared him for annual checkups yet. She may not ever.

Kevin is in his fourth year now. He's still has "storms" which is a barrage of some/all of the above hyper symptoms. I am hyper-vigilant about the eating thing, the tired thing, and not putting him in situations that can create a storm. (like the tropical area in the Woodland Park Zoo...yikes! that was a lesson well learned)

The most difficult thing, quite frankly, of Graves Disease was getting friends & family to understand the symptoms of the disease. He is, thankfully, about 95% back to normal now. However, even though he's been treated and is considered in remission, he still has the symptoms. They will never go away. They will wax and wane but the reality is that there are simply things he can't do now. For anyone who knows Kevin, this was a jarring realization.

There's all you ever want to know about Graves Disease & then some more.