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Diagnosed with Graves disease (hyperthyroidism)

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Old 03-02-2009, 12:45 AM   #1
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Default Diagnosed with Graves disease (hyperthyroidism)

A couple of weeks ago, I was rushed to the hospital with racing heart and feeling off emotionally. I was told my thyroid numbers were all over the place. Several days later, it was confirmed that I have Grave's disease. Now, they also think I am going through the change as well.

I am going crazy. I cannot stop eating, and the funny thing is, I am not gaining weight. I also have hemorrhoids to boot. Emotionally I don't feel right, either. I am told that this will all start to go away when either A. the endocrinologist figures out how much medicine I need and my levels are correct, or B. they decide to take my thyroid out and put me on Synthroid for the rest of my life.

My question to anyone that has been through this is- does this really settle down? Can you still lose weight with the medication?

Family members tried to "correct" me, if you will, saying I must have heard wrong and have hypothyroidism. They can not believe that I have the hyper kind because "only skinny people get hyperthyroidism". Lucky me to be the first person that they know to have it while being fat.

Any help or advice would be appreciated. Thanks.
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Old 05-09-2009, 09:53 PM   #2
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hi I just read this so thought i would reply. I have graves, i was dx'd 4 years ago, we were shocked as well since i have always had a weight issue. i have never been skinny. i have been on the med, mmi for short, since then. I have gained some weight because the med slows down the thyroid. if you can avoid it ,dont destroy your thyroid. the med IS safe for as long as you need to take it. I am on a very small dose now. just wanted to share that you are not the only one fat and hyper, lol,,,
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Old 05-10-2009, 11:52 AM   #3
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I also have Graves. I am currently in remission though which is good because I was on the meds for a years time.
Some of the medication they give you for graves is not a safe long term solution. The meds I was on are not very safe after a years worth of use. Starts harming the other main organs. Lungs Heart Liver Kidneys etc.
Once they found the right combonation of drugs for me I started feeling better, but even with that said you really have to watch yourself. Thyroid Storm is fatal if not recognized right away.
Im not trying to scare you!!! But information is your best defense.
WHen on my drugs I gained 10lbs over a year and noticed even with trying to diet I wouldnt shed an ounce. I am off the pills for now and if my levels go back.. only 25% stay in remission....... They will look at removing my thyroid. I am not a good Candidate for the RAI because I have T.E.D
The Thyroid Eye Disease. Which if you have that... and then have the RAI can really speed up progress of the TED.
Arm yourself with knowledge. Get yourself a good endocrinologist and listen to their advice.
Good Luck and try to stay relaxed Stress is graves worst enemy!!!!
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Old 05-14-2009, 11:52 AM   #4
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I just wanted to also mention that if you are on facebook....... there is a very awesome group on there with LOTS of information. Including weight loss issues how others have done it..... rai total removal. on and on........ Group is called Graves' Disease
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Old 05-29-2009, 10:36 PM   #5
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Thank you so much, the both of you! I waited for days, even a few weeks, hoping someone would reply to this or help me with it. I can't even find a Grave's disease support group around here.

I've gained 30 pounds back now, since the medication was re-adjusted. He just lowered it as my levels came down very nicely, he said. My options for now are to stay on the medication for another year, then try to go without it again, or the radiation.

I chose the meds for now, but I have to tell you, I did try (with doctor's encouragement to try) to stop using the beta blockers unless absolutely necessary, but unfortunately, within 8 or so hours of not taking it, my heart starts racing like crazy. Been through more tests than anyone ought to go through for this, just crazy stuff. Explains a lot, though, such as why I was wearing tank tops in the middle of the freezing cold weather, hot all the time!

Thanks so much for your help and I will check out the Facebook group.
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Old 05-30-2009, 09:42 AM   #6
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I don't have Grave's but I do have Hashimoto's. My father and several of his siblings, aunts and cousins have it. He has never in a day over his life been considered even close to overweight. He is about 5'10" and weighs approx. 140 lbs. and this is all while being in very hypo phase (TSH was 9).

Hashimoto's tends to swing back and forth from hypo to hyper until the gland finally keels over. During the times my labs showed I was in a hyper phase (this was before hypo meds) I also had trouble losing weight. I don't seem to lose the weight until I am clinically euthyroid.

Your family members are obviously uninformed about the fact that not everyone has the same symptoms. Not much you can do about that except to read as much as you can and try to help them understand (since the autoimmune diseases are considered hereditary, they too could either have it already or develop it later in life).

I don't know much about Grave's because my reading only consists of mostly Hashi's related topics, but my impression is that most people with Grave's end up having RAI sooner or later and as a result are hypo and sometimes have problems finding the right dose to treat the hypo.

For now, I hope the meds do the trick until you are ready to make a final decision
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Old 06-02-2009, 09:43 PM   #7
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I hate the talk of weight with thyroid.... Its simple.. just read lol
Hypothyroid is usually suggesting someone will be overweight as it slows the metabolism...... right this is the general category when someone says HYPOthyroid
Now HYPERthyroid. Well if you WERE Hyperthyroid you would be skinny.... Uh.. B.S ladies and gentlemen! It really does happen for some people but what it all comes down to is this.....
If you have graves or Hashimotos. ( I was praying to have the hashimotos(less severe) Not that Im trying to write you people with Hashimotos off or suggesting you have it easy thats not what Im doing.... ANYWAYS
Having Hashimotos.... or graves...... Or Hypothyroidism or Hyperthyroidism... you have heard these 3 fun lil things.......
T4
T3
and TSH

Now THAT being said......
T3 is the more ACTIVE thyroid hormone..... (metabolism)
If your T4 is the HIGH reading.....It usually means you will likely have a little more weight.. GENERALLY now.... not always (just to cover my butt) The T3 needs to read high for you to be a skinny HYPERthyroid. And if your TSH is low same game.... chunky monkey.


That being said.... also talking in graves...... Best thing you can do is get your friends and family to read up on the issues we deal with. Having us try to explain seems like we are whining... or looking for pity or trying to make excuses for being an all around witch
I hope you can get your levels good.
I am now out of remission and we are watching my levels again. When they reach the highs I was at again I will be going to get my thyroid removed as stated earlier.... I have the Eye problems of the graves and Will NOT be having rai as is right now my eyes dont bulge out of my head and I do not intend for them to. But getting the RAI will certainly speed up bulgy eyes

Hope some of this has been helpful As said check out the graves groups on facebook... lots of fabulous info on everything graves!!! Better then googling it even!!
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Old 06-02-2009, 11:17 PM   #8
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I have Graves Disease. It's not as terrible as you think. I was put on PTU for it and am now -1 year later almost in remission.
Start taking selenium everyday- my endo told me it seems to help
I also take carnitine and co enzyme 10
Check out elaine moore on google- she has an amazing website

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Old 06-02-2009, 11:27 PM   #9
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Spiritangel I have to respectfully disagree with your post.
I would not encourage anyone to start any meds herbs supplements without ever first checking with the endocrinologist.

Also Graves is not terrible for all and for others..... well for others it ruins lives.....
AM I being dramatic well that depends on what symptoms how many of the symptoms your having..

Thus coming from someone who has been on several of the meds...... been in remission and coming out of remission I wanna be in remission sadly my body has other ideas

My Personal opinion of Elaine is she is just another us.... she is simply someone who has graves...... and has written about it. Sadly the lack of books written on Graves pushes people to read books like hers... Like I said IM very sorry to disagree so much with your post I really do not mean any disrespect.

I have included a link for the graves group on facebook... thus again is simply many discussions from people who have lived it are living with it or are living with it through family members... lots of convos... if IM not mistaken Elaine is also discussed on this page

http://www.facebook.com/group.php?gid=2396171664
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Old 06-23-2009, 03:12 AM   #10
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I am sorry to hear that you have this kind of Grave's disease. But I can't give you any suggest. Sorry!
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Old 06-23-2009, 12:50 PM   #11
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I don't have Grave's disease, but my daughter did. She was 20 yrs old at the time. I knew her thyroid wasn't right, but the Dr. said it was her age. All of a sudden, she went from being a very skinny kid to being overweight. Dr. said it was hormones (she was 16 at the time). I believe her thyroid was malfunctioning, even at that time.

She lost 50 pounds without trying and was really happy, until they diagnosed her with Graves Disease. Her heart was beating a resting speed of 150 beats a minute. They were concerned, gave her the radiation treatment and she has been on Synthroid ever since. She is now 41 yrs old. Her thyroid still gives her problems now and then, but she knows what to expect and how to deal with it.

Like you, she was so hot. I remember it was -30 outside and she was sitting at an open window trying to get cool. Also, at her wedding she could only dance the first dance, and then she was soooo tired she had to sit. As for weight, well she did gain back the 50 pounds, but then joined WW 10 years ago and lost 75 pounds. She looks terrific, but of course, she still can gain easily - just like the rest of us if we don't watch our diet.

There is hope and the thing that I am most concerned about is that no damage was done to her heart.

Look after yourself.
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Old 06-24-2009, 11:42 AM   #12
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Steelslady - please please please check out the info at www.stopthethyroidmadness.com before you do anything as drastic as removing your thyroid.

also you mention not feeling right emotionally - that is a common symptom of thyroid problems and a lot of people find that they do better on Armour Thyroid rather than synthroid bec the Armour contains the direct T3 and synthroid does not.

again - please check out the info at stopthethyroidmadness and let me know if i can help with any of it.

take care,
cathy
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Old 07-09-2009, 08:36 PM   #13
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What would be the lab results numbers for Graves Disease?
my TSH last year was 1.47, then went down to .89, I just had another test last week. I am getting a little worried, but like others have said I am not losing weight either, emotionally I am a wreck but nothing new there.
Any info would be helpful to calm my nerves.
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Old 07-09-2009, 09:24 PM   #14
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Me Too - are you taking thyroid meds? if so what are you taking and what dosage?
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one for every 5 lbs lost since finally getting treatment in 2004 for my previously undiagnosed thyroid problem. I take 5 grains Armour Thyroid daily to treat my low thyroid symptoms and I can finally say that I feel good!!!!!
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Old 07-09-2009, 10:50 PM   #15
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I'm not taking any meds, Dr doesn't seem to be to concerned, or at least as concerned as I seem to be. I feel like Oprah here with her problem.
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