[ZZZZESTY]

#1075617

You found the right site. It is full of great information and support. We understand what you are going through. You are NOT alone. Hang in there, people care!

[Ski]

#1020008

Hi vonbier,

We are glad you found us, what a ride you have been on!

First, let me say, NO, we don’t all go through what you did, however you will hear some hair-raising stories in a room full of Graves’ patients, I guarantee it. There is so much confusion in getting the original diagnosis, so little information passed along in the treatment phase, it breaks my heart to hear all the tales. I thought I had a story, since it took me three months to get an accurate diagnosis, but it turns out I was one of the lucky ones. Doctors can find it far too easy to dismiss us with "oh, you’re just premenopausal," "you’re just stressed out" ~ it’s nearly criminal.

I’m glad you finally GOT the right diagnosis, and treatment as well. Try to remember that your body has literally been under attack ~ it will take getting to proper thyroid hormone levels in order to allow your body the rest it needs to BEGIN to heal. It is really difficult to be patient, I know, but try to look for small improvements in your day, rather than focusing on everything that is dramatically different. Your outlook can make the difference in the overall experience of healing.

We have definitely all been where you are in terms of fog and no energy ~ be VERY forgiving of yourself, and do only what you MUST and what FULFILLS you. Things that are draining should be put off, delegated to another (even if you need to hire someone), or taken on in small chunks that you CAN tolerate.

Please come back often, we’d love to know how you’re doing!

~Ski
GDF Assistant Online Facilitator

---

copying your message here (for those who didn’t see it in the announcements)
Hi,

I am new to this site, and guess I just feel it’s good not to be alone. I got sick about a year ago, thought I had the flu, was told several times that I was premenapausal, I got to the point that I couldn’t even bend down to pick up a piece of laundry. Finally, March 1st, I felt as if I couldn’t catch my breath and that I was having a heart attack, I went to Urgent Care and they sent me to the emergency room, I was in Sinus Tachicardia, also right abnormal atrial fibrilation and I guess a whole bunch of other problems, after two days in intensive care and every test known to man, they realized I had a thyroid storm, they already had me on beta blockers to bring down my heart rate so they started me on methimazole. Shortly after I was diagnosed with graves disease, I still don’t feel I know enough about it. My thyroid enlarged to over 5 times its normal size and so they had to do a complete thyroidectomy on September 16, my voice still has not come back, I can no longer sing, and it can be depressing, but my children keep my going. The pathology came back and they also found thyroid cancer, thank goodness my lymph nodes were clean. It really does seem like when it rains it pours. I am now starting to have vision issues, I need to find a good opthomologists that understands Graves Disease. My dr. waited for over a month to put me on levothyroxine so I wound up extremely Hypo and for some reason my lab came back with high levels of potassium??
Although it was at 7.3 it is now 5.2 and hopefully even lower since. I still feel like I have no energy, can’t seem to get out of the fog. I remain hopeful and know there will be a day when I wake up and feel somewhat normal again.
Is this something that everyone has gone through?

[Author]

Posts