Post Graves’/RAI Symptom List

This is a list of the symptoms that I have developed since I had RAI
done in April, 1998:

1. Huge weight gain. All the weight gain is around my abdomen, on my back, around my shoulders, around my neck and on my face. My arms and legs have not gotten proportionally fatter. I gained about 20 lbs. in the first 6 months after RAI.   Between June 2, 2000 and August 30th, 2000 I gained a total of just over 50 lbs.  Since September 2000 I have gained another 30 lbs.

2. Sleep is but a distant memory because I wake up several times a night. I wake up for two reasons. One reason is because my legs are crawling so badly that I cannot lie still. The other reason is that at times I literally get jolted awake by what I can only describe as adrenaline rushes. Whether I wake up because of the horribleadrenaline rushes or because of the crawling in my legs, I spend about 1 to 1 1/2 hours pacing the floor before I can fall asleep again. This happens three to four times a night. I am literally beyond exhausted!

3. I have terrible intermittent pain in my hips, legs and Achilles Tendons. The bones in my hips, feet and legs hurt. My Achilles Tendons both hurt to the point where I can no longer properly lift my heels off the floor when I walk.

4. Climbing stairs is very difficult. The muscles in my legs are gone!  When I walk up my basement stairs I actually get cramps and pain in the muscles in my thighs and calves. When climbing stairs my legs feel like they have turned to rubber and will buckle under me.  This happens all summer long even though I swim an average of three hours every day from May until September . When I say swim, I mean swim. My 7-year-old  grandson, an excellent swimmer, expects me to be Wanda the Whale when we swim together. You can imagine all the energy I have to exert as Wanda! This consistent and constant daily exercise during the summer does absolutely nothing to strengthen my muscles.

5. I usually feel sick to my stomach or very lightheaded after any kind of exercise.

6. My face has changed its shape. It is very hard to describe but I do not look like I did two years ago. People who have not seen me in the last twelve months do not recognize me.

7. I have suffered from high blood pressure for years. I have been on high blood pressure medication for 3 1/2 years.

8. I retain fluids to the point where my hands and feet swell up and my eyes are just slits. I have been on a diuretic since October 1999.

9. I have a mild hump at the back of my neck, which is becoming an aggravation as well as painful when I put my head back.

10. My eyesight has deteriorated very much over the last two years. I find this very frightening and worrisome. My peripheral vision has been affected.

11. I have constant buzzing in my ears. This combined with my vision problem and hearing problem causes me to become very disorientated. At times objects will literally float in front of my eyes. The disorientation causes me to become dizzy and nauseous.

12. I have had problems with boil like eruptions in some unmentionable places on my body. They look like angry red and purple boils.  Sometimes they get as big as a dime. In the last little while I have been getting them on my stomach and under my armpits. Quite often these boils will appear over and over again in the exact same place.

13. I have lost all the hair under my arms.

14. I have noticed that I now have big purple veins showing through my underarms, my breasts and stomach area. I also have areas where the blood veins seem to have burst leaving spider like purple marks. I also have vertical white stretch marks.

15. When I exert myself in the least little bit, like putting dishes in the dishwasher, I will sweat so much that the water runs down my neck and back. The sweat comes from my head and neck area.

16. I have a lump on each of my Achilles Tendons. The lumps are painful to touch.

17. I have a constant thirst. I drink continuously and of course as a result spent a lot of time in the bathroom.

18. I have had high sodium levels, high cholesterol levels, high BUN, low potassium, high Urine volumes (over 4 liters), high Creatinine levels, below normal Arginine Vasopressin levels, high ESR and high C reactive protein levels.

When I try and discuss these symptoms with the physicians supposedly involved in my care, the standard answer is “I really have no idea why you would have these symptoms or these abnormal lab results!”

Added September, 2001

A little while ago, I questioned No Name about my abnormal lab results.  I was particularly interested in why I had low potassium, high cholesterol, a high ESR result and a high C Reactive Protein result.  I also wanted to know what could be done to correct these problems.  No Name sat for a moment in what I presumed to be “in deep thought.”  He then looked at me and answered “I really have no idea what to do.”  I thought to myself “so much for deep thoughts” and told No Name that IF and WHEN he had an idea he could call me.”

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