[lmac99a]

#1018980

Hi all,
I was diagnosed with Graves Disease about 3 months ago. I had been experiencing symtoms for a year but my doctor failed to diagnose me. I ended up at the emergency department one night with a heart rate of 214. The ER doctor ran the thyroid tests. My 24 hour uptake scan was 85 and the doctor told me its supposed to be around 24. I had Rai 2 weeks ago and have noticed a small improvement. I understand it takes time and I’m trying to be patient but I’m sick and tired of being sick and tired. Is Graves disease and hyperthyroid the same thing? If the radiation cures the hyperthyroidism is the Graves Disease gone?
I have been having alot of trouble with swelling around my eyes for several months. My doc kept telling me it was allergies. Anyhow, my eyes look swollen but they don’t look as though they are being pushed out. Is this how it is for some people? or am I still in the beginning stages of this?

[Jake_George]

#1068260

Sorry no one has answered your questions yet.

To answer a few of your questions. Once we have Graves’ disease we have it for life. Now that you have had the RAI and will probably go hypothyroid you will have to take replacement hormones for life. But that is not too bad. A full 90% of folks get treatment and go on to live perfectly normal lives. But you still have the antibodies so you will still have Graves’ disease.

As hard as it is to wait to feel better we must remember we did not get sick overnight so we do not feel better overnight. I have so, been where you are now. Sick and tired of being sick and tired. But that too will get better with time.

The eye puffiness needs to be followed by a good eye doctor. If you have not done so, you need to be followed by an eye doctor for a good long time. Your first visit will establish your eye baseline. From that point on your eye doctor can see any changes you may have.

If you had the RAI without steroids, you run about a 20% chance of temporary worsening of the eye symptoms. Many of us with Graves’ disease get a second autoimmune disease called Thyroid Eye Disease (TED). Following up with an eye doctor is a great thing to do so they can see if you start to get problems with TED. There are thousands of posts in the archives you can search on for more information.

Time is on our side. You will get better with time. I had many eye and thyroid problems when first diagnosed. I have had Graves’ now for almost 15 years and my life is very good. Still have some short term memory issues but we learn to live with that and compensate for it a great deal.

Fifteen years later I am still working full time, became a published author, travel the world and the states and life is indeed good.

We are always only one click away to answer any of your questions.

[lmac99a]

#1068261

OMG, Thanks so much for your response. I live in a small town in Canada so we do not have an endocrinolist so my doctor is an internal medicine guy. He seems very competent so far. I don’t know if we have an eye doctor here but I’m sure he can find me one in another province if neccessary. I am blessed to live in a country where health care is free as I also suffer from Inflammatory Bowel Disease and Interstitial Cystitis as well. I am 42 years of age and never invisioned myself having so many health problems at this age. I feel like I’m 90 some days. I have another question: Ever since I started to have symptoms of Graves my dog, a Beagle, has become fixated with my eyes. Any time he is near he tries to sniff and lick my eyes, its so weird, and annoying. Has anyone else had this problem?
Thanks
Laura

[ewmb]

#1068262

Laura,
I have a cat but don’t think he’s been wanting to bother my eyes since I’ve been sick for about 2 years. His vision isn’t very good since he was bitten by a poison snake when he was younger though. I only noticed that my eyes were puffy right before I went hypo about 4 months after my RAI in May. That has under my eyes and has disappeared in the last few weeks. Where do you live in Canada? My husband is from Ontario but moved when he was really young. This is a great place to get answers to what other people have gone through. Hope that you continue to feel better.

ewmb

[lmac99a]

#1068263

Hi again,
I live on Prince Edward Island. It is a small island off the East coast and Canada’s smallest province, about 145 thousand people on the island. I see you are from North Carolina. I have been there twice as I have a sister who lives in Cary, she works as a nurse at Duke. My neice goes to UNC Chapell Hill.

[ewmb]

#1068264

I named my daughter Anne with an E after Anne of Green Gables one of my most favorite stories ever. My husband and I wanted to go to Nova Scotia on our honeymoon 25 years ago but couldn’t afford it. I will get there one day. My father in-law has been and said it was really beautiful. My husband and I met when we were at school in Chapel Hill. In fact I had my RAI there at the hospital. My endo is based there. Where do you live on the island? We all need to get our passports so we can make sure we can come up next time we want to . Last time we didn’t need them. My kids just got their Canadian citizenship cards after about a year. They hold dual now. Glad to know that haven’t had any trouble getting to a doctor but sorry about the long time on a diagnosis. That isn’t unusual at all with Graves from what I have heard here.

Hope you continue to feel even better tomorrow.

ewmb

[lmac99a]

#1068265

Hi, I live in a rural community called Hampshire which is only a 10 minute drive from Charlottetown, the capital city. You would know Charlottetown from the Anne books. The Island’s generates alot of tourism from the popularity of Anne, especially amongst the Japanese. My mother is also named Anne with an e. You know I would have to say that the hardest part of this Graves experience has been the emotional aspect. When I was diagnosed and looked for information on the internet it was such a relief to me. I had been feeling so emotional for months, over-reacting to everything, bursting into tears, I thought I was losing my marbles. I have the most wonderful understanding husband but I kept feeling sure that he would tire of me and leave, of course he didn’t, he has been right by my side.I Have had problems with muscle weakness in my legs to the point where its hard to get up off the toilet or get out of the car, I quite frankly CANNOT wait for this to get better. I have also had a really hard time the past year with my inflammatory bowel disease and my gastro doctor has told me that my thyroid was probably aggrevating my condition. Stupid thyroid! Why does one little gland control so much?! Before this, if you had asked me where in the body is the thyroid gland I wouldn’t even have known. Sorry, I know I’m rambling, thats what I do now. argh
Laura

[elf]

#1068266

Hi, Nova Scotia here. I was diagnosed at 41, 4 years ago. Had RAI 3 months after the diagnosis, too. Had one eye puffy before RAI, too. RAI helped me to feel better starting at about 5 months after RAI, after I went hypo. Your muscle weakness is def. Graves, and will be helped when your levels normalize. I started taking 100 mg Synthroid 5 months after RAI, and never stopped or changed the dose for 3+ years. Feeling healthy all this time.

However, my eyes were acting up for a year after RAI. Just watch them. I got all the wonderful feelings – grittiness, teariness, but didn’t have the double vision. After some time, the hot stage of TED does stop. With me, it stopped miraculously after 12 months, but it could be anything up to a few years.. . One never knows how much development one’s eyes will get. I did get a moderate proptosis at the end. Am now going through eye surgeries, to put my eyes back a bit. Sounds scary, but it is not. If you ever need an eye surgery, you will most likely have it here in Halifax since the only orbital surgeon east of Quebec is here, – and she’s wonderful.

But that’s too early to say, maybe your puffiness will improve with the improved thyroid hormone levels. In the end, I feel it’s treatable, – people can feel better with thyroid replacement, and your eyes, if needed, can be fixed. Good luck.

[Author]

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