[Hopeful23]

#1074887

Wow, first off. I can’t believe you stopped taking your meds. I have no insurance but still go to the best drs in my area because they can’t refuse treatment due to lack of insurance because this can be fatal if left untreated. You may had to have gone to like a clinic that treats people based on like income or something but I lost my insurance from graves disease. I am only 23 so as I do have very severe symptoms as the weakness in my legs but its not to your extreme. It took 2 years to diagnose me. I def understand you emotional liabitly and your struggle with finances, relationships etc cause if I didn’t have my student loans from college I would have lost everything more than once. My endo never pushed the RAI on me but i think its due to my age. He immed said your thyroid has to come out so ill set you up with a conslutation with a surgeon. I did research cause I know this type of surgery can have serious complications and lucked out that she specializes in thyroidectomys and has over 15 years experience and has less than 1% of her patients that have had complications and the ones who did were in their 70-80’s. My levels are def being monitered before surgery cause my levels were 17.4 and .005..10 days before surgery I have to take some type of pottasium iodine (radioactive free) pills that helps prevent thyroid storm during surgery plus i was told they give you something IV before operation not sure what it is though..(always forget to ask those ?’s). I seeked thearpy recently with a psychologist that specializes in illness that cause a delibitation life stlye and other symptoms such as anxiety, depression and emotional liablity….I would just stay proactive and TAKE your meds even when you feel GREAT!! This forum has a lot of great people with very helpful information as well as personal experiences, symptoms, and stories that may help you in all aspects of this disease ( as you have stated) Stay strong and know your limits…..

Happy Holidays
Hopeful23

[grasshopper]

#1019899

Hi everyone, it’s nice to be here & see that I’m not alone. I’m sorry to all that are suffering. I know much of what you’re going thru, having been diagnosed about 7 years ago. Until reading your stories, I truly felt that maybe my walking issues were more a phobia than from having Graves Disease, but I can see I’m not nuts, just sick with Graves. Wheww! ” title=”Wink” /> About 7 years ago, I was diagnosed with hyperthyroidism..My dr says I have Graves Disease. Before I was diagnosed, I thought I had MS or something else, not a problem with my thyroid. My legs felt so weak, I couldnt walk well and anytime I had to go up stairs, I had to be helped. I couldn’t lift my leg to even get myself up a curb! I remember driving myself to the ER, only to find that there was no handicap access, only curbs..I went home & cried. I felt like a true prisoner in my own body.
I was very itchy, emotionally anxious & couldnt sleep. I had no appetite, lost 80 lbs ( I was very heavy, so that was the only good thing, yet I looked like death according to my friends & family)
I was put on PTU, and beta blockers once diagnosed. My bloodwork was taken routinely and my Dr decided I would benefit from having the radiation treatment..swallowing radiation. I did it and nothing happened…nada, zip! My thyroid has been so difficult to control ” title=”Sad” />
Finally, after 4 years, it was under control enough to have some surgery I needed. My dr’s would not allow me to have any surgery since I could have a thyroid storm while under anesthesia, and they wouldnt take the risk, and neither would I.
Since I felt good, I was stupid ( no other way to explain it) and stopped taking my thyroid meds. I was at a point in my life where I had no insurance, and couldnt afford the meds, or the dr visits.
Now, a few years later, I have been taking my PTU again, but my legs are very weak, and I am once again having a hard time walking & getting up stairs, curbs that are only 6" high, and generally feeling uneasy when walking. My walking as if I’m walking on eggshells has made my back give me problems & I have a pain on my right side that won’t go away. I’ve lived on tylenol for the back issues, maybe that is why my right side hurts? It is where the liver is located & I know the risks & issues tylenol can create for some.
I find my memory, and concentration are effected. I cry more & feel anxious much of the time. I itch again, and get very tired. So many of the things I feel could be from other reasons, but in having been down this road before, I feel it is due to my thyroid issues. I’ll see my dr again next week and tell her what’s been going on.
I have to learn to put me first at times. I think the stress I have in my life, due to finances & relationships, & not taking good care of myself made my walking issues and other symptoms return. What does anyone else think? Am I correct? Does anyone else have muscle weakness or any of the other things I explained I have?
Do what is best for you. Take good care of yourself. Ignore those who don’t understand. I’ve found many who never heard of hyperthyroids, but know much about hypothyroids.
What other things can I do to help myself & take better care of myself?
Let’s all hang in there & get thru this together:-)
Happy Holidays!! ” title=”Very Happy” />

~Elise

[powellcrash69]

#1074888

I agree with hopeful23, I can’t believe you stopped taking your meds. Most states have $4 generic program at Walmart for people with no health insurance.

I have lived with Graves’ Disease for 15 years. I had been ill for several years before I was diagnosed and was in congestive heart failure at age 23. I was actually diagnosed by a dermatologist that I went to about the herpes on my hands, and feet. He could not treat me because I had tremors so bad he could not spray liquid nitrogen on my hands. However, he saved my life by calling a local endocrinologist he knew who took me in immediately that day. I was also diagnosed with a rare form of inoperable thyroid cancer along with the Graves’. I was treated and was told there was nothing they more they could do between the radiation and the radioactive iodine treatments. I was given less than 6 months to live. That was 15 years ago and here I am. I have been in remission and am considered "cured" of thyroid cancer, the Graves’ is a daily battle with increasing problems with my eyes.

You can live with the ups and downs of this disease if you continue to take care of yourself. Find a clinic that will take you, based on your income. Do something, just don’t stop taking your meds. They can make a difference in your quality of life.

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