How do others live with Grave's Disease

[Roxe]

I am new to this site. I stumbled upon this site while researching for a homework assignment for my medical transcription class.

I was diagnosed with Grave's Disease in the summer of 1993. My son just turned 1 year-old, when I thought I was having a heart attack. I was in the hospital for 5 days under the care of a cardiologist. It took him 2 months to listen to me and his nurse before he referred me to an Endocrinologist.  

I am curious to know how well everyone and their family are taking it, living with Grave's Disease or other diseases of the thyroid gland.

[eellen]

Hi Stella, Wish i could offer some great advise but i cant. I just wanted to say Thank you so so very much for your post.   i have had such a hard time identifying with another on graves.  I too have a changed world…. i am still looking for my new place…so to speak. Anyways i am forever grateful to you for sharing with such honesty and courage.  You have given me some peace.  thank you

[Roxe]

I understand your frustration, Stella. When my children were small, I was very active. I worked full-time, volunteer at my daughter's school & church, etc......When I was under the care of the Cardiologist, after my release from the hospital, I was losing weight. I thought I was losing what I put on when I was pregnant with my son. Then the vomiting started, having energy but slept like a log at bedtime, hair loss every time I washed my hair. My first visit with the Cardiologist, his nurse weighed me, BP, resp. the usual stuff. She commented that I had lost weight since I was released from the hospital. All the information she put in my medical file. This Doctor put me on Xanax because he thought I was having anxiety issues. The following month, I was down 2 to 3 dress sizes. I talked to the nurse again & she stayed in the room with me when the Doctor came in. He checked my heart & looked at my file. He asked me how the Xanax was helping me. When I told him I quit taking them & why, he told me to get back on them. I let him know I was not going back on them because I didn't need them. I let him know there was something else going on that didn't feel right. He looked at my file again & saw I dropped from 157 lbs. to 119 lbs in 2 months, he decided a CBC was in order. His nurse was my moral support & she backed me with everything I had to tell him. She made a few points with him as well.

When I first saw the Endocrinologist, she ran all kinds of blood work plus I had to go through the radiation treatment. After all the tests were completed, I asked her about my so called heart attack. She let me know that thyroid disease can mimic heart attacks, as well as other symptoms of heart trouble or other diseases or disorders.

I take life more seriously than what I used to. I became more strict with my kids because I loved them very much & wanted to be around to watch them grow up, get married & start their own families. I just wanted to be with them all the time. My husband noticed the change as well as my own parents & his parents. But he never changed. He only helped when it was necessary & balked at everything I asked him to help me with or do it himself because I didn't have the time. Now I am waiting for my son to graduate high school next year so I can file for divorce from a man who just adds stress to everything & won't help will what needs to be done. I have a life & I am living it.    

[Totie]

Thyroid issues can be hereditary. There are 15 in our family, but only 3 have issues with the thyroid. One sister had half of hers removed (age 21), but not on any medication and as far as I know did not have any on going issues with it. (She is now mid 50's). My other sister is hypo and on medication (age 42 when hers started up). Myself, well I was 23yrs old when I developed graves (my son was 1yr old). Doctor thought that is what triggered my graves, they really do not know why. When i started complaining about symptoms they treated me for six months for depression. It was not until I hit a thyroid storm and developed a goiter (i had the neck of a lineman- 88 lbs.). I was hopitalized twice for thyroid storms. We did the RAI, and since that did not work TT was the only option.

How old are your kids? You could recommend to them that at their next annual appointment to request that their thyroid levels be checked due to family history of thyroid disease.

You mentioned your dosage adjustment. I go through that as well. The first 10yrs I was on 200mcg, then my lab work started going whack. Went down to 175, 150 , 125 , 100 , back to 125mcg; for the past 3yrs at 125mcg and doing well on that. My last TSH (all my doctor checks) was .67 ; I go to an Endcrinologist only if issues arise, other than that my PCP handles my levels and medication.

[Roxe]

Hi. I am on Synthroid 150 mg for Grave's Disease. The Doctor reduced it earlier this year. It seems like every 3 years my numbers are so erratic that it takes me another 6 months of blood work to get them back where they should be. I have been wondering if maybe I should go back to my Endocrinologist. Our family Doctor retired over 1 year ago. Our new Doctor is nice & we like him, plus he monitors my counts very close.

I was the first one in my family diagnosed with Grave's Disease. At that time, it just struck woman in their 30's. One of my Aunt's (my mom's sister-in-law) was diagnosed with Grave's about 2 to 3 years after me. My sister-in-law was diagnosed with Grave's about 15 years ago. My sister-in-law (a nurse in Texas) was diagnosed with Grave's less than 10 years ago. Now all of a sudden I am learning in one of my medical classes that Thyroid Disease is hereditary.

I am fine now, but all these conflicting pieces of information is confusing. If this is hereditary, maybe I should talk to my daughter & son to get them in for testing now.  

[stella5349]

Well Graves disease did change my life alot. For me - it was he// and back and at times I thought I was going to die. I have a bad history of improper care with many doctors - so I believe that has a big thing when it comes to this disease altering your life as you knew it.

Also the physical changes can effect a person - more than others. Simply adding 10 pounds to a person can mentally damage them as if another was stricken with thyroid eye disease and their whole face has changed in appearance.

Mentally this disease can be cruel. Physically this disease can be distructive. I went from vibrantcy to nothing for many years and it took everything I had to even get back to where I can live amoungst people again - both mentally and physically in a sense.I lost the ability to be the mother and wife as I was before I was sick and that to this day - ticks me off to no end. Not b/c I got sick - but because I was looked at as something other than a sufferer of this disease.

I was left to the only thing that could be done to keep me on this earth and that was to take my situation completely into my own hands and learn how to get me better. Then find a doctor that was willing to be there for me and understand I knew what I wanted to try to see if I could improve my situation.

As for my thing now. Well it's still tough. I certainly don't have the ability to be exactly the same person as I was before. My family has come to the realization that I will never be who I was - but are happy I am still around - compared to what I was when so terribly ill. I have a hard time excepting less of what I was - but I deal with that day by day and how I am feeling.

There's some days I express myself better and fight harder and then there are other days where I want to crawl in a whole and cry some. This disease took away my prefection of living and now living as mede-orker is hard to swollow.

[Totie]

Are you on any medication?

I had graves/hyper/goiter in 1994, had to have TT to fix it. The RAI did not work for me.

I don't recall there being any issues as far as how it was handled by my family. I was very sick for a bit, but once my levels stablized I was back to normal.

I am fine now, BUT everyone handles things different. My family never said anything about it, they helped me when I needed it and only if I asked (after surgery), but that was about the jist of it.

My family is however different. I have two sister with thyroid issues, but it is not something we discuss. I guess we were brought up that health issues happen to just about everyone, what's the big deal.

I currently do not have any thyroid issues, i take my medication faithfully and get blood work done once a year and that is about it.

For me it is not , NOR was it a life changing experience.