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I was diagnosed with Graves disease after complications during an unrelated surgery on 6/26. My heart wouldn’t quite racing and the surgeon started backtracking and insisted that I have a test for thyroid. I had my first radiation treatment on 7/25. I’m scheduled for blood tests every 2 weeks to check to see if the radiation is doing what it’s supposed to. So far, the only thing that has happened, is that the weight loss (40 lbs. in 2 months) has stopped. That was the only good thing that I know of about this disease. I have tremors, my heart still races, and I feel tired all of the time. Sometimes I feel like my insides are all jumbled up inside. It’s hard to explain this to someone else who isn’t experiencing the same problems. Unless they can see a big gaping wound, they don’t think there is anything wrong. I am working, but somedays it’s really hard to get up and come in when I don’t feel good. I would appreciate hearing from anyone else who might be having some of the same problems.
Hi Becky, Yes, I’m another with all the symptoms you describe ( except for the weight loss ) My body clings to this fat, I think, but I did lose about 15 pounds. Are you taking any medications to help with the tremors and racing heart? I take a beta blocker, inderal (aka:propanolol) and it helps alot. My doctor has me off work for now until I get stablized. I had my 1st dose of radioactive iodine on 6/28, with little results as yet. I’m still thyrotoxic with my levels in the 20’s. I see and endocrinologist (finally) on 9/27, and I suspect I’ll be a repeater of the treatment. Are your eyes bothering you? Where do you live? I know what you mean when you say your insides are all jumbled up…for me, especially in the brains and emotions. I’m quick to tears, tending toward depression, and anger easily. I pity my partner who has to live with me. I know this is fixable, so you just hang in there. It will take some time, so lets keep in touch during the process, OK? I live in rural Northern California up in the redwoods. I wish we had a support group in our area, but we don’t, so this will have to do for now. Keep in touch.
Rachel
I have recently been diagnosed with the early stages
of the eye conditions related to Graves Disease.
Does anyone have any suggestions on alternative
therapies that might be helpful for the swelling
causing eye sensitivity and double vision.
I am also interested in learning more about orbital
decompression; this sounds like a rather involved
surgical procedure. Since my disease appears to be
in early stages I am trying to take as many
preventative measures as possible to avoid further
progression or complications. Any information is
greatly appreciated as it appears that its hard to
find doctors that can give me answers; apparently I
can not even take medications since my thryoid panels
tested in the normal range. Thanks!! micheleDear Bernadette,
I thought I was the only one in the history of graves to put weight on. I gained 20 pounds! I was on the PTU for 6 months and then took the atomic cocktail last January. Unfortunately my levels are back up and my doctor wants me to take the PTU again but I refuse. The medicine made me feel terrible. I was also taking the inderal but I had the rare side affect of hallucenating. I am now taking atenenol which has no side affects for me. I hope to have another I131 treatment as soon as possible.
Denise
P.S. My stomach is also very bloated.I hope I can join too even though I do not have graves disease, my 30 yr. old daughter does. The National Foundation was a godsend when we were looking for treatment.
Dear Katie,
So glad to hear from you! No, I do not have any children but coming from a large family myself I can appreciate yours.
I will be 33 next month.
I lived in California, Orange county, for 10 years but I now live in Florida. My boyfriend in Ca. couldn’t take it any more. Financially or emotionally. Now I am staying with my very understanding younger brother. I miss California. It is soooo hot and humid, especially with this lovely disease.
I hope your appointment goes well. I am seeing my endocrinologist on Wed. and hope to get the atomic cocktail a.s.a.p. I refused to go back on the PTU so I hope he doesn’t give me a hard time. I hate that PTU.
It is so great to have someone who can relate to my situation. Take care and hope to hear from you soon.
DeniseHi Denise!How was your dr. appt.?I really hope everyhing went
well for you. By any chance did you or have you gained
weight throughout your battle with graves?
Boy, I have! I was told by soooo many people that
most people lose alot of weight. Poop!! Not me!!!
Please take care, your in my prayers,
Katie
What part of Orange County did you live in?Hi! I was diagnosed with Graves Disease last year. My days have sometimes been, let’s say, interesting for a lack of a better word.
I was intolerant to the cold, had tremors and a goiter which made it difficult to swallow. I took the radium and the
goiter went away. I no longer fall asleep, and go into these tailspins with my emotions. I am still learning about the disease and
I thank God everyday, that I am here! I take my synthroid daily, and yes I have truly gained some weight. I sold all my clothes and
did what most women love to do, “went shopping.” I still have good days and bad ones, like everyone else. When the bad ones creep up,
I venture out to the book store, order a Cafe Latte, listen to some jazz, and chill! I am married, and the mother of 4 children, a set
of twins and not one, but two teenagers. My family and true friends help me but it all into perspective. I hope your treatment goes well
for you, and just understand, you are truly not alone. May God bless you and keep you.Hi Reeta…Thanks for your response. Your story seems permeated with a sense of acceptance and grace…I was touched. The hope that this will be more managable once my levels come down, which it feels like they’re doing now. I’m pretty sluggish and tired, less tremors, but I still get hot all the time. I know I need an attitude adjustment with this, and I’m praying and striving for that. I’ve had so much trauma, pain and loss in the past few years, this feels like insult added to injury. I sometimes get on the depressed side. My eyes are bothering me the most. Do you have eye involvement? I’, 48 years old, living with a man this past 7 years here in redwood country. I broke my femur in a big way Christmas Eve
“93, was in a wheel chair for most of ’94, had 3 surguries, then Ernie was hospitalized 1 year to the day later, again on Christmas Eve, with a bleeding ulcer which was very serious, but he’s doing fine now and I just got those bills paid. Then I lost my job at the hospital to downsizing, so I was forced to work the floors and I hurt my low back with all the lifting. The hospital couldn’t seem to find any modified work for me, so I found a new job working for the county Public Health Dept., as a public health nurse,,,a brand new nursing experience…I lasted 4 months and then I was diagnosed. I don’t mean to babble on so, but I thank you for caring
RachelDear Katie,
I lived in Huntington Beach, and do I miss it.
I gained 20 pounds!!!
My doctors appointment went well. My levels are still very high but the endo agreed to let me take the radioactive iodine anyway. I through such a fit that I guess he was afraid not to let me take it. I hope to get the treatment in the early part of next week.
Take care, Denise
P.S. What did you think of that article I told you about?Dear Katie,
I looked back and realized you didn’t get my last message in regards to the article. I am posting it on top of the board so everyone can see. Please read and give your opinion. Thanks, DeniseHi, I’d be interested in getting more information on the effects of Graves. I’m male, 45, and was diagnosed by the military approximately 5 years ago. I was told virtually nothing about the effects of the disease, other than they would all cease with the irradiation of my thyroid (FALSE!!). The subsequent information I have been able to gather, as to symptoms or side-effects or ANYthing, is almost exclusively female-related. Any additional knowledge I can pick up about this disease would be much appreciated.
Thanks! Bob PolkChristine,
No we do not have any groups that far south but we are
in the process of doing an on-line CHAT room once a month.
Your sister can go to the library. Most libraries have
free internet access. It may help. Sorry it took so long
to answer.
Regards,
Jake GeorgeHi Katie:
I’ve gained weight too. It’s so frustrating
because the doctor keeps saying I should be
losing weight. Great, finally something that
could help with those terrible 10 pounds. Instead
I’ve gained 27lbs! (Even though I wouldn’t wish
this disease on anyone – at lease there could be
one “good” side effect!)
Anyways, I’m starting to feel somewhat better since
the “cocktail” but I’m expecting the down period once
the thyroid starts dying off. (Just took the pills
3 weeks ago.)
Hang in there!
MarnieHi Bernadette,
I was on PTU also. But I had an extreme allergic reaction
and had to stop taking the pills. I too have gained weight,
about 27 pounds. Since I’ve taken the radioactive
pills however, my energy levels are getting back to
normal (at least until I start getting to the “hypo” side)
and I actually am motivated to exercise again. It’s been
about a month since I took the radioactive pills and I
definately think its helping. -
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