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The Hardest Thing About Having Graves Disease...


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#1 GigiPrice

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Posted 06 December 2012 - 07:34 PM

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I am sort of new to this forum. I had Graves back in 1989 and was treated with Radioactive Iodine in August 89. Back then there was no internet- but at least there was some news coverage of then- President and Mrs Bush-
I found the hardest part of having Grave's Disease, besides feeling lousy, - was the total lack of sympathy or empathy from my peers- esp at work. It was obvious I was ill- I LOOKED sick; and lost so much weight so rapidly that I am sure people thought I had AIDS. People who got lung cancer at the workplace received sympathy cards- all I got was written up for "using too much sick leave". Sigh-

 

but that was then-
fortunately I found one of the best endocrinologists around and she walked me through it!
The isolation back then was very hard- I am glad there is this site to help others and I hope my experiences from back then can help someone here and make there experience a little less difficult!




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#2 Shelby

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Posted 14 April 2014 - 10:02 PM

Yeah, for me it's those days where I'm not feeling good or I'm so exhausted (which isn't often but happens a few times a month) and I look fine and have no temperature. People don't realize that it's an autoimmune disease and you're not cured just because your thyroid levels are normal.



#3 zonex305

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Posted 24 April 2014 - 06:49 PM

Are your levels normal right now? Mine are. I have had GD for eight years now. I have only taken methimazole and beta blockers on and off and i am frequently monitored. I had 1 thyroid storm which put me in the ICU. Since then i have made major changes to reduce overall stress like a career change, divorce, yoga, exercise, and i also do not eat many preserved foods and i do not eat fast food at all for years now. I have been in remission two times amd was quick to notice when my levels were off a bit to get back on lowww doses of thyroid meds. I have always been th same weight and eat very well. My BMI is perfect...it takes work, but i would rather feel good than go through all those symptoms. Its so draining.



#4 zonex305

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Posted 24 April 2014 - 06:52 PM

I forgot to mention when i first got diahnosed and maybe one other time due to lack of responsibility for m health i lost like 15 pounds from being hyperthyroidism very quickly...but that is old news now thank goodness



#5 Misty

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Posted 24 April 2014 - 09:36 PM

As Zonex says, taking responsibility for our health makes all the difference.

Yvonne, remission since 2005



#6 aebaldon

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Posted 04 August 2014 - 06:13 PM

Has anyone had their husband leave them due to angry issues?  Mine has left and already filed.  I found out I had Graves in March of this yr.  My MD did not tell me about all the emotional issues that go with it.  How can I help him see I really need him right now and my emotional issues are not me and not truely direct at him?



#7 StCeciliasGirl

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Posted 24 August 2014 - 10:54 PM

Sorry for the marriage problems, aebaldon. People don't know the meaning of "for better or for worse" anymore...

 

I've been pretty sedated since before diagnosis, so I can't speak to that. (I had the high heart rate, and other symptoms for years before diagnosis, and strange allergies to most beta blockers, so I got xanax mostly).

 

In the year since I've been diagnosed, my health's gone up and down, and even with the husband by my side, there's very little "understanding." Of course, I'm fairly calm/cool all the time still (Xanax), but he amped up on the super-health kick, then there were money problems (we switched to Obamacare just to afford the constant blood tests), and I've found "the cure" (ATDs... methimazole) worse than the disease.--well, not really of course: before MMIs, my vision got bad fast; my muscles had atrophied; resting heart rate was 140bpm, and I had the shaky thing going on... the MMIs helped that. And got my blood levels into range relatively quickly. But I'm always freezing, everything hurts, and husband reacts to that. I also seem more susceptible to illness, whereas before I "just had anxiety". Husband DEFINITELY detests the "always freezing" part (I've burned myself pretty bad just with heating pads, and I get Vicodins for pain, which is a definite double-edged sword).

 

We had a fight this evening. Just words; they hurt, but I don't react much (we have children who get distressed if we raise our voices. I had to ASK him to keep it between US and not drag the kids into anything). There's really no way they can understand. I've lived it this last year: why don't I do ______ or ______, why are my blood levels good but I feel like crap? Why, why, why, like I'm not asking myself these very same questions all the time.

 

So I don't have the emotional stuff (unless I've been cranked up on the MMI too much and get hypO as hell, which I've learned to "just say no" to), but the marriage problems seem to come with it. Yes, at the WORST time ever, I know! But maybe you're better off without that kind of help, you know? Eg, my husband had to pick me up from ER in middle of the night a few months ago, and he was so furious about it he drove super-fast. It was cruel. If it weren't for the kids, ....well, let's just say that it's HARD being sick AND having to be the caretaker of the partner.

 

If you have any support groups around (wish I did! Shoot, I don't drink and have been tempted to go to AA), go get some real support.







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