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Replacement Hormone

About Me

My Graves' Disease saga began noticeably in May, 1993. My first symptom was itchy, irritated eyes that constantly felt like they were filled with sand. After a couple of weeks of suffering, while assuming it was some kind of pollen allergy causing the irritation, I went to my optometrist (didn't know anything about ophthalmologists at the time) to have him take a look to see if he could figure out what was going on. After inverting my eyelids and telling me the undersides were covered with very small bumps, he gave me drops and reached the same conclusion.... allergy. Shortly afterward, the sandy sensation disappeared, further proof (I thought) of only an allergy.

Sometime later in the summer, I began experiencing hand tremors. It got to the point that I was barely able to sign my name. I just assumed it was stress and/or my lack of ability to control my nerves more adequately. I also started to notice a rapid heartbeat, especially when I tried going to sleep. It wasn't unusual for me to count 100 bpm at bedtime. During this same period, my eyelids started twitching like they were having muscle cramps or spasms. I passed this off as strain caused from too much computer work. A month or so later, after really looking at myself in the mirror, I realized that my left eye looked larger than my right one. Still no real alarms went off until I started having chest pain. Hypertension/heart disease runs in my family, so I immediately assumed that was my problem. I talked to a friend to get a suggestion on a doctor. I made an appointment then cancelled it a few days before the time arrived. My friend was gone on vacation and didn't find out about my lack of 'intestinal fortitude' for a week...after which I thoroughly got my backside chewed for not keeping the appointment...especially after learning that I was having chest pain. I worried endlessly about the fact that I might actually be having a heart attack, but was even more fearful of possibly getting that diagnosis from a doctor. Okay, I made another appointment...this one I kept.

When I made it to the doctor's office I assumed I just had really high blood pressure. I told the doctor that I needed checked for high blood pressure and tossed in checking my thyroid too (per a suggestion from another friend). My blood pressure and pulse were very high, so they did an EKG. It came back normal, so the doctor quizzed me on other aspects (later to be GD symptoms) of how I had been feeling. He was very surprised that I had requested the thyroid check, because my symptoms so obviously pointed him in that direction. At the time, I was actually *hoping* for anything other than high blood pressure! I now realize that was a *really* dumb wish! The doctor ordered the requisite blood test and a week later, my diagnosis was in...Graves' Disease...a 'textbook' case according to my doctor. I'll never forget his approach to telling me the diagnosis. When he said GD, I was somewhat relieved that it wasn't heart disease and at least I had *heard* that name before although I had zero knowledge about what it all meant. I was started on PTU, 3X/day and Propranolol and sent to an endocrinologist. I was about as naive about doctors and diseases as any soul could be, so I totally panicked when I saw the endocrinologist. He made an appointment for me to do RAI for two weeks later and told me that his 40-year-old wife had just undergone the treatment (at the time, I was looking at the flip-side of 25). After leaving his office, it was total panic time! He was talking about something with the word 'radiation' in it and having to take some kind of pill for the rest of my life! Could this GD be *that* serious?!? I cancelled my RAI appointment that same day and made another one with my primary care physician (PCP). After doing a little research on local doctors, I told my PCP what had happened and that I wanted to see a different endo. He wholeheartedly agreed and gave me his support when he agreed to follow my progress on PTU to give me a chance to get stabilized so I could make a more informed decision about my next step. The PTU and Propanalol worked well for me. There was a very noticeable improvement in my symptoms. I was amazed at how 'hyper' I had been as I began to slowdown to a more 'normal' speed.

I then saw another endocrinologist (retired, part-time professor) who I thought for sure would know a lot more about this stuff called Graves' than the first endo I saw. When I went to my first appointment, I was amazed at the difference. My new endo explained all my options, gave me his total support, loaned me a copy of 'My Thyroid: A Home Reference,' left the decision completely up to me and was willing to give me all the time I needed to decide. It was wonderful!

In the following few months, I devoured every piece of information I could find on thyroid disorders/treatments including several medical textbooks from the School of Medicine library (an advantage of living in a college town). I learned the ins and outs of each of my options and carefully weighed RAI against surgery. In the meantime, my left eye went through more muscle spasms in December, 1993. At that point, my Graves' eye symptom disappeared. (I'm hoping it's gone for good.) After a misunderstanding on dosage of PTU with my PCP which increased my PTU to 4X/day, which made me so tired that I couldn't hardly climb stairs or even walk to my car, I decided RAI would be my next step. I set a date of March 1, 1994.

I was taken completely off PTU five days before RAI. I went in on a Monday morning (how fitting) and was given a tracer/uptake pill. A Nuclear Medicine technician then did a scan of my knee to have some normal tissue to compare. She then did a scan of my thyroid and measured its mass through a series of pinpoint scans. Totally painless, except for laying with a hard, rolled towel under my back, just below my shoulder blades for what seemed like forever. Forty-five minutes later, I was taken into a small room and presented with a lead encased vial. The RAI was mixed with water. The 'cocktail' had absolutely no taste! That was surprising to me, but the technician taking a Geiger counter reading afterward was the most surprising! I was told to avoid small children, pregnant women etc. for at least three days and to not get pregnant for at least six months (which I wasn't planning on doing anytime soon anyway). I took the week off from work to avoid exposing anyone to the RAI and possibly harming them.

The only sensations I experienced afterward were a slight burning/tingling around my thyroid area and it being kind of warm. The only other ill effect came about three weeks later, when I had trouble swallowing solid food. It seemed to want to get stuck at my thyroid. That went away after 6 or 7 days though. My endo put me back on PTU two weeks after the treatment to give the RAI time to work. I also continued on a smaller dose of Propanalol. By June, 1994, I developed a rash on my arms. I notified my endo who immediately ordered a white blood cell count. I later learned that the rash wasn't from the PTU (just bad skin), but my WBC count was *very* low. My endo took me off PTU that day and I haven't taken it since. My dosage of Propranalol was lowered gradually until I was completely off it too.

From that point on, I have had periodic blood tests, but am still within 'normal' range. (Yes, it has been almost three years as I write this.) My original PCP left my geographic area six months after diagnosing me, so I have a new doctor who I have just about driven crazy for the past two years or so. The two-year anniversary of RAI was very difficult for me. It took me that long to run out of patience, because I knew going in that I would have to take replacement hormone shortly (I thought) after RAI. I just wanted to get started on replacement and get on with my life. After a couple of months of *really* bugging my doctor, I reached a new resolve...to go on with my life, replacement or no replacement...which I have done. My last blood test came back with my TSH almost out of the maximum high 'normal' range. Maybe the number 3 is charmed! :)

I can't say this whole GD thing has been a walk in the park for me, but I have survived. I've gone through bouts of depression, but not bad enough to require medication. I have also gone through being very tired of the fight/life/doctors/explaining myself and been haunted by hypothyroid symptoms (muscle/joint aches, cold intolerance, strange mood swings) for the last 6-8 months as I get ever so close to starting replacement. I have accepted and (so far) conquered them all. Although, the most disturbing aspect has been the loss or at least clouding of my memory. I've always been able to juggle many, many projects in the past and remember every detail of each one. Now I walk in a room and can't remember why I'm there to save my life! I've learned to write myself lots of notes though!

UPDATE:  As of February, 1997, it appears that my thyroid looked into the abyss of hypo and decided it didn't want to go there quite yet. My TSH levels dropped by two points in four months!  However, I am not complaining at all.  I'm currently about as 'normal' thyroid-wise as a person could get and the best part is that I *feel* normal. This is definitely one of the 'great' good times.

UPDATE:  As of February, 1998, I've finally started on a very low dose of replacement hormone (0.05 mgs/day).  While all my blood tests are still showing me within "normal" ranges, my doctor decided that my Free T4 was low enough to go ahead with the replacement.  If my levels go back toward hyper though, I'll have to stop taking it for a while until they level out again.  I've managed to lose about 30 pounds over the last 5-6 months on a not-too-restrictive low-fat/no-fat diet.  I'm proud to say that I'm now standing right on the weight I was carrying around when I was diagnosed 4 1/2 years ago!  An even better result from losing the weight has been the end of my bout with high blood pressure.  I'm no longer required to take medication for it.  While I have recently been experiencing what I consider to be hypo-related symptoms, being on even a small dose of replacement seems to have managed to keep them in check for now.  It's nice to have several days and even weeks now when I actually don't even think about the fact that I have GD.  At this point, I'm very happy just to have that.

May, 1999: After almost 5 years post-RAI, my bloodtest finally put my TSH over the top, by 0.5 points in late January this year. However, at that time, I didn't feel hypo at all really. Apparently my body hadn't adjusted to the lack of thyroid hormone yet, so my doctor suggested that I wait six more months to see if my thyroid found another one of its second winds and dipped back into the normal range. No symptoms, so I was prepared to wait until mid summer to see if my thyroid did indeed have another Ace up its sleeve. Well, my hypo-with-no-symptoms bliss didn't last long. By early March, I was really starting to notice the desire to sleep most of the day. Of course, full-time jobs don't work with that very well, but I did my best to work around it as I've done for years now. I then began experiencing very sore, achey muscles in both my legs and especially my arms. I spend most of each Season except Winter riding a bike, so the problems with my arms became very difficult to overlook. The outcome was a call to my doctor a few weeks ago for another bloodtest. Surprisingly, my TSH levels had indeed slipped back within normal ranges..by 0.08 points! After a discussion with my doctor, he agreed to start me on a small dose of replacement hormone with the understanding that I would have my blood tested again in 8-12 weeks. If my levels start zooming back toward hyper, I'll have to discontinue the replacement to see if my thyroid can hold its own for just a bit longer. After a couple of weeks on replacement, my muscle aches have almost been alleviated and any other potential symptoms have been held at bay. I currently continue to try to "give back" as much information as I can to others who have this disease and am working on beginning a local support group for other Graves "warriors" in my area. After what seems like a lifetime with this disease, I'll continue to keep on keeping on and hope that maybe my experiences can help someone else out along the way. In the meantime, my saga continues....