Graves Disease: My Sister was dx yesterday. What can you tell me about it from your experience?

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Posted 11/15/2012 by FLCindy in NSBR Board
 

FLCindy
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Posted: 11/15/2012 12:41:26 PM
Graves Disease: My Sister was dx yesterday. What can you tell me about it from your experience?



lindywholoveskids
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Posted: 11/15/2012 1:12:01 PM
Did JFK have it?
I had a friend with it but it didn't seem to affect her too much. She did take a med for it.
Sorry I'm not helping much.
You might get on the Mayo Clinic website- its very well respected.

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Posted: 11/15/2012 1:22:31 PM
No experience with Graves but I have gotten a lot of info from the fb group Stop the Thyroid Madness. There's also a book.


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Posted: 11/15/2012 1:24:35 PM
JFK had Addison's I think. It's an adrenal issue and lots of people with thyroid issues also have adrenal probs.


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zishisak
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Posted: 11/15/2012 1:29:02 PM
My husband was diagnosed with Graves Disease about 20 years ago while in the Air Force. He was given some kind of RadioActive Iodine Therapy, which killed off his thyroid, and now takes a medicine every day (I'm blanking on the name) to replace the function of his thyroid. I hope current treatment has improved from the radioactive stuff.

ArlaMo
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Posted: 11/15/2012 1:38:58 PM
I was diagnosed with Graves' in October. I am currently on thyroid meds to try and regulate its activity (Graves means your thyroid is overactive.) They're not really working, so my endo called yesterday and said it is time to look at radioactive iodine as treatment.

The big thing with radioactive iodine is that you do need to be isolated for about a week, especially from children. No preparing food for others, use a separate bathroom, use disposable dishes, wash your clothing separately, etc.

There's a great book which a friend loaned me (she also has Graves') called "The Thyroid Sourcebook for Women" by Dr. Sara Rosenthal - fabulous resource, very in depth.

Meds, radioactive iodine (and then thyroid hormone meds for life) and surgery are the three treatment options. In the states, surgery isn't done quite as often according to my endo.

ArlaMo
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Posted: 11/15/2012 1:42:18 PM
Oh, and as far as symptoms that I'm experiencing - eye pressure and pain, sleeplessness, rapid heartbeat, nervousness, tremors, difficulty swallowing due to the enlarged thyroid. Some of my symptoms are tempered a bit because I am also on high dose steroid due to another auto-immune disorder - the one symptom I wish I had is rapid weight loss I've gained a ton while on the steroids, but darn it, that's not happening (only somewhat kidding...)

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Posted: 11/15/2012 1:52:47 PM
My DH's thyroid went so overactive so suddenly that they went straight to the radioactive iodine pill (and then eventually meds for hypothyroidism). It may or may not have been Graves Disease -- they didn't test for that specifically. We were told at the time that it didn't really matter if it was Graves or not as the treatment would be the same regardless.

His symptoms of an overactive thyroid were extreme fatigue (he would wake up, get out of bed & have to go lie down on the sofa he was so exhausted), very high blood pressure & heart rate, nervousness, agitation, and extremely fast weight loss (lost 35 pounds in 2 weeks). It was a very scary.

I wish your sister the best of luck in treating her condition.




susanlk
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Posted: 11/15/2012 2:27:03 PM
I was very tired & the weight kept piling on. As of the past few years, there's only 2 medication options - methamazole & ptu (propylthiouracl). I was diagnosed in February 2008. They put me on methamazole first & I had some nasty reactions (enough that they wrote on my chart that I was allergic). Switched me to the ptu & it brought my thyroid to normal, good levels.

I was on that for about 18 months, which I was told should be the longest to be on it. Luckily, I have not had a relapse since being off my meds. I was classified as being in full remission a year ago. Now my family doctor just needs to do bloodwork once a year. As long as that is good & I have no symptoms recur, then I'm good.

There are many symptoms/effects from Grave's. Not everyone will have the same experience. I was very tired all the time, could sleep 13 hours on the weekends & still have trouble dragging myself out of bed. I had weight gain instead of weight loss. I didn't have the shakes, racing heartbeat or eye issues. Once I went on the meds, my weight stabilized,but I didn't lost anything , and the exhaustion significantly improved very quickly.

I have been told by my endo. that if my symptoms return, I will temporarily go back onto the meds until they do the radiated iodine to destroy the thyroid. Then I will become hypothyroid & be on a thyroid replacement for the rest of my life.

To this day, my weight is a constant struggle, but I have lost 10 pounds in the past 6 months.


Susan


Imblessedwth6
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Posted: 11/15/2012 5:32:22 PM
My aunt has it. Her biggest thing was the eye pressure are protruding eyes. Biggest thing for her was taking the medication at almost the same time everyday and NO SKIPPING any. Made a big different with her eyes.
Good-Luck to your sister

freecharlie
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Posted: 11/15/2012 5:35:20 PM
My mom lost a lot of weight just before she was diagnosed. They did the iodine thing and got rid of the thyroid. She now takes a daily medicine called synthroid.


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Posted: 11/15/2012 5:37:17 PM
My ex dh had it very bad and had his thyroid radiated. I have it but not to bad, it goes in and out of remission. I did read an article and it said in Europe they like to wait until a woman goes through menopause before turning it off as it can slow down on its own at that time. I have been off my meds for a couple of years and so far so good.
But when I was going through the whole finding the correct dosage it was tough. Once they finally got it right, wow did I feel better. You don't realize how crappy you felt until you start to feel better

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Posted: 11/15/2012 5:49:45 PM
I was dx last August. I was soooo tired and weak. I could barely walk up a flight of stairs. Also had racing pulse, high BP and a goiter that was starting to become visible. They did the radioactive iodine on me less than a month later. One of the deciding factors to go that route was that you can't be on Thyroid medication for Graves and be pregnant and I didn't want to run that risk as there is still a glimmer of hope that I'll have a baby.

The radioactive treatment is pretty simple. You go to the hospital, take one pill and go home. I couldn't be around anyone for 4 days, but other than that no effects.

My levels are still adjusting themselves. I take Synthroid every day and have my levels checked every month by the endo.

All in all...not a biggie. You can't eat or drink anything for an hour after taking the Synthroid which means I have to wait for coffee. That's really my biggest complaint.

Oh, there has been weigh gain. However, I didn't really do anything to help myself in that department. You have to be pretty diligent about eating as your metabolism is going from 100 mph to a dead stop. Unfortunately, your appetite doesn't follow the same rules.

The pressure in my eyes is getting better although it does look like I'm stoned a lot. My endo said to just use saline drops, but I've found that Systane works a lot better and was recommended by my eye dr. It's spendy, but OTC.

blue tulip
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Posted: 11/15/2012 6:05:07 PM
my coworker had it about 7 years ago. she had her thyroid "killed off" and takes synthroid every day. her most noticeable symptom was that the pressure in her eyes got so great it caused them to protrude pretty far.. i don't know if she could even fully close her eyelids at the worst of it. they went back in a little, but she recently had surgery to shave down her eyesockets and allow them to be put back to normal. i noticed on her badge ID pic, taken before grave's, that she was kinda big-eyed to begin with.



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Posted: 11/15/2012 6:06:24 PM
I was diagnosed with Graves almost 2 years ago. I went ahead and had them irradiate my thyroid out of existence, as the drug that blocks extra thyroid just made my loopy. I now take synthroid too. And struggle to keep my weight down - treadmill several times per week is a necessity.


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bobbie01
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Posted: 11/15/2012 6:26:05 PM

All in all...not a biggie. You can't eat or drink anything for an hour after taking the Synthroid which means I have to wait for coffee. That's really my biggest complaint.


My endo said that coffee (and any drink) is fine. I can't eat anything and I can't take an antacid for 4 hours after taking my Synthroid but I can drink whatever I want.


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bobbie01
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Posted: 11/15/2012 6:29:39 PM

The big thing with radioactive iodine is that you do need to be isolated for about a week, especially from children. No preparing food for others, use a separate bathroom, use disposable dishes, wash your clothing separately, etc.



You have to go on a low iodine diet before you take the pill, too. I have done it twice and it isn't so bad. There are a ton of foods with iodine in them that I never knew about. You can have salt with no iodine in it though. I have a Pinterest Board devoted to the things I made while on the low iodine diet. The first time, it took me less than 2 weeks to get my iodine levels low enough to take the pill. The last time I did it (I have to do it every year) it took me almost a month. I guess because I had been on Synthroid for a year. Anyway, the cooking thing is a pain in the butt but I ate healthier than usual because everything had to be made from scratch.


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ArlaMo
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Posted: 11/15/2012 6:57:49 PM
Oh yes, had to do the low iodine diet for a couple of weeks before they did a thyroid uptake and scan.

Curious why you need to have the pill every year? My endo said once we kill it, it stays dead and I just have to take Synthroid the rest of my life. I know occasionally it doesn't work the first time, but I'm curious why the yearly repeat. Unless you are doing it for testing?

UkSue
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Posted: 11/15/2012 7:46:08 PM
I have a friend who had Graves. She ended up having a thyroidectomy but has been extremely well after the first few months of testing to get her thyroxine levels right. She is now very healthy with loads of energy, just has regular blood tests and occasional adjustments to her dose. She was told that as it is an autoimmune disease, you can also get other things like arthritis, iritis etc, but after 5 years she has had none of those. She is 57 now.


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Posted: 11/15/2012 9:17:39 PM
I was diagnosed with this right before my first year in law school, so it was 20+ years ago. I was very nervous and jittery, and I did have the bulging eyes, although honestly, that was a symptom my doctor noticed, no one else noticed that my eyes looked different. I had lost some weight, although not a ton. I went on PTU and from what I remember, I was on it longer than you are supposed to be. Eventually my doctor said I needed to come off it, so I was sent to a radiologist to consult about the iodine treatment.

Well, the FIRST question the radiologist asked me was whether I'd had all the children I wanted to have. At that point, I was married but we didn't have kids yet. When I said no, he said there was some risk with respect to reproduction, but he tried to downplay it. The very fact that that was the first question he asked me freaked me out, and I told him I needed to think about the iodine treatment. I didn't take the PTU or anything else for a few months, and when I went back to my doctor, it turned out that I was in remission so I didn't have to have the iodine treatment or anything else.


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Posted: 11/16/2012 10:32:58 AM
My biggest complaint with the meds is no milk I'm not a fan of most breakfast foods but I love cereal! I can't remember why but milk is a no no within a few hours of taking thyroid meds. I've tried taking the meds at night so it won't interfere with my breakfast but on occasion I eat a little late, ill wait until morning. The stomach HAS to be empty. I've been on thyroid meds for three years and still haven't found the right dosage it's very frustrating. And it's especially hard when the people around you do not understand what you're going through. It took 3 years to find out what was wrong with me. I had friends/family members that made me feel crazy. Your sister will need lots of understanding, it's like an emotional roller coaster.




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Posted: 11/16/2012 3:27:12 PM
I've also had the RAI treatment and I've been on synthroid for about 14 years. At first, I took my med with breakfast, but now I try to take it on an empty stomach (didn't see a difference either way).

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Posted: 11/16/2012 4:38:25 PM
"My endo said that coffee (and any drink) is fine. I can't eat anything and I can't take an antacid for 4 hours after taking my Synthroid but I can drink whatever I want."

Why do you have to wait 4 hours? Its always been an hour for Synthroid.


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Posted: 11/16/2012 6:05:44 PM
Calcium binds to the thyroid meds so you don't get the full effect. A lot of antacids are calcium carbonate. Same problem with milk.


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Posted: 11/17/2012 7:13:30 AM
I had Graves (autoimmune HYPERthyroid disorder) and Hashimoto's (autoimmune HYPOthyroid disorder) 7 years ago ... and had a whack of wacky symptoms. Some Graves symptoms are tremors, sweating, heart palpitations, weight loss, anxiety, memory and concentration issues, eye bulging, bone-weary fatigue, insomnia. I had all except the weightloss and eye issues. I couldn't exercise because of the heart palpitations. I landed in Emerg once with a resting heart rate of 185. It was normally 58 ... no joke.

I was on PTU for almost a year complaining about side-effects when the dr finally switched me to Tapazole, which was much better. Not long after that my thyroid burned itself out and I went fully hypothyroid. You can't stay on the hyperthyroid meds longterm like you can for hypothyroid. They are hard on the liver. I've been taking 0.1mg Synthroid every day since then and it's fairly well managed except for my hair and my weight.

The Graves was a much worse rollercoaster ride for me. While I hate the hypothyroid, it's much easier to manage.

My best advice is to find a doctor who will listen to your symptoms. The bloodtests are subject to interpretation, so my doctor goes on how I feel. I have to be almost in the hyperthyroid range to feel normal. Otherwise I am sluggish, fatigued, and miserable.


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