Graves’ Disease – A Family’s Struggle with Thyroid Disorders
I got such a great response on my interview with my oldest son about life with congenital hypothyroidism that I decided to interview my husband about his experience with Graves’ Disease. I think I may be obsessed with interviewing people, especially family members. Watch out family! Just a heads up for Thanksgiving! Anyway, here’s what my darling husband had to say.
What is Graves’ Disease?
Graves’ Disease is an autoimmune disease that causes the overproduction of thyroid hormones, in other words hyperthyroidism.
When were you diagnosed?
At age 28, I had lost some weight and wasn’t sleeping well. I decided to go in for a physical before our first son was born, and my primary care physician diagnosed me with Graves’ Disease following the physical and blood work.
What were your initial symptoms? What was the worst?
Initially, I was restless and lost quite a bit of weight. I am 6ft tall and had gotten down to 138 lbs. I was also irritable, which was strange for me as I am usually a pretty easy going and happy guy. I was also getting these horrible headaches behind my eyes that I would later learn was caused by the muscles behind my eyes contracting (Graves Ophthalmopathy). At my peak, my heart rate wouldn’t go below 150 BPM during the day and 100 at night. I have never felt worse in my life!
You tried medication first. What medication was it? What was it like?
The endocrinologist put me on propylthiouracil (PTU) as a thyroid suppressant, with the hope that after a while on it, I may join the 20% or so of people who need no further care. I was extremely sensitive to the medication, and we had a hard time getting the right dose. My doctor tried to wean me off to see if my thyroid would fix itself, and it was horrible as my hyperthyroid symptoms returned.
How long did you try the PTU before trying radioactive iodine?
We went around with the meds for 2 or 3 years and could never get it right. It took a little while before my endocrinologist could talk me into trying the radioactive iodine. But, when we decided to have our second child, I knew I had to do it. I couldn’t keep going feeling so crappy.
Describe your experience with the radioactive iodine.
Pretty uneventful, I had to go pick up the pill from a radiologist. Then, I had to be in isolation for 3 days. Because we had a child and you were pregnant with our second child, I had to stay at your mom and dad’s house. The isolation period afterward was no fun, but I didn’t really feel anything from the iodine. The problem was coming off of my meds and the waiting period to see if it worked.
At what point did you decide to have surgery?
5 months after I had the iodine treatment I was feeling pretty bad, so I went back to my endocrinologist and he told me that I had failed the treatment and was just as hyperthyroid as before. He had given me what he called the highest dose he could of the iodine, and said I could try the same dose again. He was shocked it didn’t work since it is supposed to be a near guarantee. At that point, our second son was going to be born soon and I had to have relief and had to have it quick. My endocrinologist and I determined my best course of action was a total thyroidectomy.
What were you most worried about with the thyroidectomy?
I knew I couldn’t go on feeling the way I was. It was absolute misery, and I didn’t want to continue to be that way with an infant in the house. My family deserved better. The surgery itself was a bit worrisome. Being in sales for a living, appearance does matter and I didn’t want a big scar on my neck. I am darker skinned and I tend to get keloids. My voice was also a huge worry. With the proximity of the thyroid to the vocal nerves there was a risk messing up my voice. That would have been hard to deal with in a career in sales as well. Luckily, all of that came out fine.
What have you struggled with most since surgery?
Not too much in the big picture. But honestly, I have never fully felt like myself, even with medication. My numbers always look good, but there always seems to be something just a little off. At my next endocrinologist appointment, I want to ask about adding T3 or switching to Armour to see if it helps.
How do you think the experience has helped you be a better dad?
Well, it definitely made me put things in perspective. Most of all, though, since both kids have congenital hypothyroidism and you have Hashimoto’s, it really gives me a better understanding of what everybody is going through. I know how it feels to be off, and it helps me to understand them, especially when they can’t verbalize it.
I can definitely attest to the severity of the symptoms. I watched my husband’s health decline before my eyes. He lost a ton of weight and was very edgy. I recall one morning we were dressing for work as our oldest son (at that time a baby) played on our bed. I looked over at my husband sitting on the edge of the bed, his suit sagging on him from the loss of weight, and he was sweating and shaking – it was beyond obvious that the PTU hadn’t worked. I literally started yelling at him that if he didn’t swear on our child’s life that he would go to the doctor that day, that I was going to drag him to the emergency room. It was that bad. I have never been so worried about my husband. I needed him here. I needed him to help me raise our son.
We had a few more of those moments over the course of those 4 years that he battled Graves’ Disease. His thyroidectomy was at a difficult time. We had a 3 year old, and I was very pregnant with our second son. I was terrified for him to have the surgery, but I was terrified for him not to have the surgery. We are lucky that it all turned out okay, and in general, he is healthy. It’s tough to hear that he still doesn’t feel 100%. I think that’s true for most people who have thyroid disorders, though. The thyroid controls so many bodily functions and when it isn’t performing (or when you don’t have one at all), I think there’s always going to be something that isn’t just right.
Pay attention to your symptoms. Tremors, excessive sweating, goiters (or any change in your thyroid gland), fatigue, nervousness, irritability, weight loss, and inability to sleep are all symptoms of hyperthyroidism and should be discussed with your doctor.
One small butterfly shaped gland and it controls so many things, especially in my house. All 4 of us in my little family battle thyroid disorders, and it’s kind of crazy sometimes when I think about it. In some strange way, though, I think it binds us. Every family has their thing – ours is our thyroids.
-By Blythe Clifford