Graves' Disease is a disease that affects the thyroid. My thyroid had grown to be 2-1/2 times bigger than it was supposed to be. On the thyroid uptake, it was absorbing 60% when it should have been absorbing 10-30%, and because it had gone "renegade" my pituitary gland was basically not doing it's job (I was told "the pituitary gland is like a thermostat, but when there is a fire in the house, the thermostat is not going to do a lot of good.") So, in the meantime, I was amazed to find out the hundreds of symptoms I'd been suffering from one after another had all been tied to this thyroid of mine!

1. I was shaking as though I had Parkinsons,

2. I was often light-headed and dizzy, my ankles had swollen up,

3. I couldn't sleep very well (exhausted, but couldn't fall asleep even if I tried),

4. I had a low grade fever that wouldn't go away,

5. I had the "runs" (which they refer to as "hyper bowels") that never seem to get better,

Because my immune system was trying to fight off my thyroid it wasn't able to keep me well in other things either:

6. My skin became very soft everywhere except my face where I had to put CREAM (not lotion, cream!) on it twice a day for it to be normal or it would crack off and scale away...

7. My hair, which used to be normal to dry and washable every few days, had to be washed EVERY day or it got greasy and unmanageable,

8. My fingernails have got all these ridges on them that they didn't used to have,

9. I couldn't concentrate for any length of time at all,

10. I gained LOTS of weight,

11. I had a terrible time remember things -- even everyday words and phrases!

(there's more, but I can't remember it all!!) ....and ALL this was attributable to the thyroid, believe it or not!

Makes it sound like I looked pretty awful, but no, aside from the weight that I couldn't hide QUITE so well, I was been able to compensate in one form or another with the other problems so that I didn't look like death warmed over... I just looked very tired and worn out all the time. (Which was accurate to my state of being!)

I was told that the only way to really get rid of the problem was to destroy the thyroid -- take PTU or have radiated iodine treatments and I would hopefully "normalize" in about 6 months if all went well.

After taking the PTU for a couple of days, my skin turned sunburn-red and I itched everywhere. I was allergic to the PTU. The only other alternative was the RAI or surgery, and my endo said that surgery was a last resort and that it wasn't really such a good alternative. (I didn't want a "second smile" on my neck, anyway).

I took the I-131 (RAI) in late February, 1997, followed by 10 days of cortico-steroids, and I was a MONSTER to anyone in my vicinity. I had a TERRIBLE temper. I screamed about things that didn't matter (and I knew they didn't matter but I couldn't help screaming about them) and I would apologize for screaming WHILE I was screaming... I wallowed in depression and frustration, and my poor family was so patient and understanding. My moods went completely wild and I ate everything edible I could get my hands on and stuff into my mouth. I gained 15 pounds in two weeks... and then, when I quit taking the cortico-steroids, I slept for about 2-3 months... getting up for only a few hours at a time and then crashing to sleep again. My weight continued to rise. I gained a total of 50 pounds (and I was already overweight to begin with, so this was not heartening.

I started getting cramps in my legs and the endocrinologist put me on .150 Levo-Thyroxine: thyroid replacement hormones. A few months later, I was still not feeling right, even though my levels said "normal," so they upped the dose to .175. That didn't work either (although my levels still showed "normal"). A few months later they switched me to Synthroid and told me to use .150 and .175 on alternating days... so I had to set up my medicine bottles with the caps indicating "ODD" and "EVEN" days of the month so I would remember which one was due next by the date. It was more "normal" feeling for me, but still not back to where I felt was MY normal, but the medication dosage was not changed again.

It's been just over a year since I had the RAI done. I went to Mayo Clinic in the fall of 1997 and was told there that things were "normal" ... not what I wanted to hear when I knew otherwise.

7/21/99

I finally found a doctor last year who prefers to use natural remedies whenever possible, resorting to synthetic, chemical, pharmaceutical only when absolutely necessary. He treated me with respect, he listened to me and he tested my Free T3 levels. The test results found my T3 levels to be near to nothing. Obviously, my system was not converting the T4 in the synthetic thyroid replacement into T3 in my body. He immediately agreed to put me on Armour Thyroid replacement (dessicated pig thyroid). We started me out on a very low dosage.

Wonderful thing, this dessicated pig thyroid. I could feel the difference almost immediately. You don't have to wait 3 months to check your levels again. Once every three weeks I went in to get my levels checked and we adjusted the dosages. In the beginning of 1999, I finally started to feel a bit more "normal" (although the weight has decided to stick). I'm rotating between 120 and 180 of Armour (every other day).

I was very encouraged when I actually got pregnant in March of 1999 - although, unfortunately, I miscarried in April, and have had another miscarriage as well, since then. Not sure if it's the thyroid levels that are contributing to the miscarriages, or if there are other factors involved, but I am hoping that we're at least on the right track - and we're considering the fact that I was able to get pregnant is a sign that we're heading the right direction.

I'm still far from cured, but I'm better than I was. I'm not shaking anymore. I'm still quite sleepy and lacking in energy (but not as much as before). I still sweat much more frequently than I used to, I am still much more forgetful than I used to be, still not as able to concentrate as I once could, and my moods still wander aimlessly all over the map (although nothing like they did with the steroids). I am very glad that at present I am not suffering the eye disease that is usually found in conjunction with Graves'.

I have figured out that the more I know personally about the disease, the better off I am. If I can keep in touch with what is going on with me, I can better let the doctors know what is going on. The real problem for most of us with Graves', I think, is trying to find a doctor who will listen to how we're feeling, and not just take test results as their conclusive evidence that things are "fine" when they're not.

9/26/02

It has been three years since I updated and there have been several health issues, some related, some I don't know if they're related. I will only mention here those that I believe are directly related. I have had several more miscarriages due to hormonal imbalances that I am sure are affected by the Graves' Disease. My medications have been changed (I am now taking 120 Armour and .25 Cytomel (T3) daily) This has helped me greatly. We have moved and the doctor I most recently saw said that equals about an even amount of T4 and T3 going into my system. My energy level improved with the additional T3 and life was more manageable.

I was still having a great deal of difficulty losing the weight that had been gained in the beginning of my thyroid problems. Finally, after religiously pursuing every low-fat diet doctors put me on (to no avail), I found a doctor (in a whole other state!) who saw that I really was trying to get well (and not being a hypochondriac!) and he agreed that I was "falling through the cracks" of traditional medicine and alternative medicine might be able to help me out. He suggested that I go on a modified Atkins diet. I was treated for Candidiasis, but that was not an issue, so treatment was discontinued. The diet was low-carb, no sugar, and a maximum of 1 cup of only complex carbohydrates per day. Once the candidiasis (yeast) was ruled out, I began allowing myself to eat items with no more than 2 grams of sugar per serving, and 20 grams of complex carbs per day (per Atkins). I lost 16 pounds in the first week and within a month I had lost 25. I have been on this diet for 4 months and have lost a total of between 40 and 45 pounds! I still have nearly 100 more to lose, but still... Hurrah!

Concerns about this diet have been mostly about high cholesterol with all the cheese, eggs and meat products, but when I had my cholesterol checked, it had previously been 220 (normal is between 110 and 200) and it had dropped to 177! So this has been very encouraging. Needless to say my energy level has also improved.

One glitch was transferring my prescription from one state to another and having them substitute a generic equivalent for the Armour. I missed my meds for about 5 days trying to straighten that all out, and am "coming back" from dealing with the fuzzy brain and everything for lack of thyroid hormones.

Because the doctor that I visited here didn't believe in alternative medicine, I chose not to continue to see her, but have found another doctor who is willing to treat me and is near enough that I can drive there and back in the same day. I am hoping that he will continue to pursue the avenues my doctor in Ohio was working with me on -- Wilson's Syndrome, and Hormonal Imbalance which are thyroid related too! and Allergies -- and eventually we'll get me all straightened out. Wouldn't that be grand!!

I wish everyone who reads this all the best. I hope it has helped in some way to bring some understanding or clarification of Graves' Disease: what it does and how it affects the everyday life of someone who has been suffering from it. I hope that reading this might encourage others to be tenacious - that there is hope - and not to give up that hope.

For more information about Graves' Disease as well as other thyroid diseases, have a look at the following links: