Graves' Disease

JeanC By JeanC, 8th Jan 2015 | Follow this author | RSS Feed
Posted in Wikinut>Health>General Health>Diseases & Infections

Graves' Disease and how my life has gone since I was diagnosed and in treatment for it

Graves' Disease and me

In June of 1996 I was diagnosed with Graves’ Disease, an autoimmune disorder that caused my thyroid to start working overtime and making my body go crazy. By the time I went in for a checkup, I was experiencing what felt like hell. I was losing weight at a rapid weight, no matter what I ate (when I actually had an appetite), my heart was going crazy, I couldn't stand the heat (even when it was only 70 degrees), the slightest exertion would cause my body to start trembling and I would experience severe muscle weakness. I constantly felt like I was ready to jump out of my skin. My moods would swing at a moment’s notice and my eyes felt like they were trying to crawl out of their sockets. But one of the worst things was I thought I was losing my mind. I couldn't remember simple words, like bucket, when I needed too and had trouble remembering what I was doing from moment to moment. I had finally decided it was time to have a checkup, which showed that I was having trouble with my thyroid.

When my doctor saw my lab report for my thyroid, he had me schedule a radioactive iodine uptake test. What this meant was a trip to a hospital where they gave me radioactive iodine in the morning and then that afternoon I went in for the tests. One of the things they did was a thyroid scan, where they took pictures of my thyroid. After the scans I got to go home and then go back to the hospital the next day for a final test and to hear the results. The head of the radiology department came in and told me that surgery was out of the question (no kidding guy!) and that I would need to have RAI, which meant I would go back in to take radioactive iodine 131 to help kill my thyroid. I thanked him for the information, went home and started getting my hands on everything about thyroid and Grave's disease I could find at the library. It was several days by the time my doctor got back to me with the official results.

He offered to send me to an endocrinologist so I could look at my treatment options, but the nearest was going to be 100 miles away in Spokane. By this time the Grave's had me so whacked, I said no I had already decided to try the drug therapy, to which it was pointed out did not work for everyone. From what I read, I knew this and decided I wanted to try the least intrusive therapy first. I figured, try the drugs first, if it doesn't work, I can try the radioactive route (my husband threatened that if I did, he was putting a radioactive hazard sticker on my forehead).

So my doctor gave me a prescription for propranolol (a beta-blocker to help with the heart palpitations) and propylthiouracil (PTU) which is an antithyroid drug. I was able to pick the propranolol up the first day, but the pharmacy had so little call for the PTU, I had to wait another day. I took the beta-blocker as soon as I could and the relief from a lot of the symptoms was almost magical in how fast it was. I started on 100 mg of PTU a day and after a week or two I began to feel almost human again. I went in for another blood draw to test my thyroid levels and they were still out of whack. My dosage was raised again and I felt even better. I went in for another blood draw. My levels still were out of whack, so my dosage was raised to 400 mg per day. I felt like I was going to rattle with all the pills I was now taking. I went in again a couple of months later for another blood draw (for someone who is terrified of needles, I was doing pretty well. I was actually volunteering to go in). Hurray! My levels were within the normal range! I was able to go a few months without looking like a junky for several days (I bruise real easily and the marks from the needles show up really well on my arms as I have difficult veins to draw from). I was on 400 mg of PTU a day since October of '96 and was feeling a lot better than I had a year before.

I went a couple of years on the medications and went into remission for a couple of years and I was off the drugs. But things kicked back up again, so it was back onto the ATDs, though I didn't need the beta-blockers anymore. I eventually developed an allergy to the PTU, so I switched to methimazole. I now am on a permanent low dose protocol to keep the thyroid in check and along with watching the amount of iodine I get in my diet and alternative therapies I have my life back.

Tags

Graves Disease, Health, Hyperthyroid, Thyroid

Meet the author

author avatar JeanC
Photographer, artist, cook, cookbook author, fat activist & biographer of #MsEllaPhant
http://about.me/PurpleDuckyDesi

Share this page

moderator Mark Gordon Brown moderated this page.
If you have any complaints about this content, please let us know

Comments

author avatar John Watson
9th Jan 2015 (#)

This is great information to get out there. I am sharing it on social media. Thanks for telling your story.

Reply to this comment

author avatar JeanC
9th Jan 2015 (#)

Thank you John :)

Reply to this comment

author avatar Mark Gordon Brown
9th Jan 2015 (#)

The most frustrating part of having some health problems is waiting for the diagnosis. For sure I wish you well.

Reply to this comment

author avatar JeanC
9th Jan 2015 (#)

Yeah, waiting is always the problem. There are times I wish we lived in the Star Trek universe with Dr McCoy's gadgets that gave instant results hehehehe.

Reply to this comment

author avatar Vickie Collins
9th Jan 2015 (#)

Oh Jean, Star Trek would help a lot with travel and medical stuff!!! Oh to dream. LOL But I read your first paragraph and it reminded me once again that we are one person - our physical condition impacts our emotions, and I suspect the opposite is true also. Hang in there. :)

Reply to this comment

author avatar Sivaramakrishnan A
11th Jan 2015 (#)

I had the same disease thirty years ago but took a different journey. It was classified hyperthyroid and I underwent surgery to remove half of my thyroid gland but after five years the symptoms reappeared. Then I took radioactive iodine but later another specialist said it was a wrong choice with risk of cancer. Though US doctors opt for this, others don't!

Then my disease became hypo thyroid and I take Thyroxine sodium tablets daily now. I do remember clearly the hyper thyroid symptoms of tremors and weight loss and I could not write clearly and my signature on checks were haywire! siva

Reply to this comment

author avatar JeanC
11th Jan 2015 (#)

I later saw a specialist who kept telling me that if I would just nuked the thyroid I would be cured and everything would be fine. He didn't like it when I told him I was very informed on all the options, side effects and possible outcomes and preferred to keep with the meds. In the US the doctors want to take the easy way out, but won't get it thru their heads that every patient is different and one treatment doesn't fit all.

Reply to this comment

author avatar Nancy Czerwinski
23rd Feb 2015 (#)

Thank you for sharing this article. I wish you well.

Reply to this comment

Add a comment
Username
Can't login?
Password