RAI And A Complete Thyroidectomy Failed To Distinguish My Hyperthyroidism
Mac Winslow, Thyroid Thrivers
Thyroid Nation

37 years young
North Carolina, USA
Graves’ Disease

Grave’s Disease is an autoimmune disease that causes the overproduction of thyroid hormones, in other words hyperthyroidism.

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 Grave’s Disease, hyperthyroidism, following the physical and blood work. I shouldn’t have been surprised, though, as 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! Although, I thought it was stress, because my job at the time, was overly demanding. Looking back, I realize that I was pretty naïve. I’m so glad I had the wherewithal to see the doctor.

Rai And Complete Thyroidectomy Failed To Extinguish My HyperthyroidismAfter the initial diagnosis, the endocrinologist put me on propylthiouracil (PTU) as a thyroid suppressant, with the hope that after taking it for a few months, I may join the 20% or so of people, who need no further care. However, 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, but it was horrible as my hyperthyroidism symptoms returned. We went round and round (not fun at all) with the PTU meds for 2 or 3 years and could never get it right. Eventually, my endocrinologist talked me into trying radioactive iodine RAI. When we decided to have our second child, I knew I had to do it. I couldn’t keep going around feeling so crappy all the time.

My overall experience with the radioactive iodine was pretty uneventful, I have to admit.

StaceyRobbinsI had to go pick up the pill from a radiologist. Then, I had to be in almost total isolation for 3 days. Because we had a child and my wife was pregnant with our second, we decided I should stay at my in-laws house. The isolation afterward was no walk in the park, certainly, but it went by quickly. The iodine RAI, felt like nothing, actually. No strange symptoms to speak of, so taking it was the easy part. The real problem was coming off of my medications.  Waiting, most impatiently, to see if this ‘radioactive’ pill did it’s job, was sometimes excruciating.

5 months after I had the iodine treatment, I was feeling exceptionally bad, so I went back to the endocrinologist only to discover that this sure-thing RAI treatment had failed. WHAT?! Hyperthyroid, again! He had given me what was considered the highest dose he could, of the iodine. Nonetheless, he suggested I could try it again. No thanks! (He was shocked it didn’t work since it is supposed to be an almost near guarantee). Obviously, for me, it wasn’t.

Our second son was soon to grace us with his presence and I knew I had to have relief and I had to have it quick! My endocrinologist and I determined my best course of action, at this point, was a total thyroidectomy. Feeling this way, terrible and crappy all the time, was NOT an option for me anymore. Something had to be done. An infant in the house and my constant, absolute misery was not going to be a good mix, at all. My family (and I) deserved better.

My overall experience with the radioactive iodine was pretty uneventful, I have to admit. #Hyperthyroidism #Graves #RAI Click To Tweet

Deciding to have a thyroidectomy, was a bit worrisome as I made my living in sales. Anyone who is anyone knows that as appearances do matter and I didn’t want a big scar on my neck. Especially because I am darker skinned, and tend to get keloids. My voice was also a huge concern. With the proximity of the thyroid, to the vocal nerves, there was a risk that this could alter and diminish my voice. That would have been hard one to swallow – with a career in sales, talking is vital. 🙂

Luckily, everything turned out fine with my surgery.  Since then, on the otherhand, I’ve basically been just “okay”. 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. I recently started taking Liothyrinine (aka generic Cytomel), which provides T3 in addition to the T4 I get by taking Levothyroxine (generic Synthroid) so, we’ll see how it goes.

RAI And A Complete Thyroidectomy Failed To Distinguish My HyperthyroidismIn the end, having Graves’ Disease or hyperthyroidism, definitely put things, LIFE, into perspective. From RAI treatment and a thyroidectomy to adjusting and readjusting many medications, I’ve realized having good health is the most important thing, next to my family. Most of all, though, since both of our children have congenital hypothyroidism and my wife has Hashimoto’s, it I have 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 my amazing kids can’t quite verbalize what they are thinking and feeling. Our house is like the perfect Synthroid Billboard, but I wouldn’t have it any other way. You can learn more about Mac’s story on his wife’s blog at ThyroidMom.


A note from Blythe Clifford, wife (and a Thyroid Thrivers)

I can definitely attest to the severity of my husbands’ symptoms.  I watched his health slowly 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, the anti-thyroid drug used to treat hyperthyroidism, 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.  The RAI treatment that didn’t work and unsuccessful thyroidectomy, were difficult times.  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 just isn’t 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, Graves’ disease and should be discussed with your doctor.

One small butterfly-shaped gland – it controls so many things, especially in my house.  All 4 of us in my happy little household, battle thyroid disorders. 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, evidently our thyroids – Hashimoto’, Graves’ disease and Congenital Hypothyroidism!

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Questions or anything to ask MAC about his hyperthyroidism journey? We want your thoughts in the comments section–Please! 

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