# How has Graves' Disease affected your life?



## John

I'm curious to hear how this condition has affected or impacted lifestyles, careers, etc. I'm newly diagnosed but I'm dealing with a lot of lost time at work due to fatigue and other symptoms. I also feel like what started out as "extra energy" has turned into exhaustion that affects pretty much every area of my family, social and personal life. I'm hoping and praying my treatment helps things level out soon.

What about you? How has this condition impacted your daily life? Also, can anyone look back and see progress due to successful treatments that worked for you?


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## JPGreco

I'm probably not the person you want to answer this question cause I've always been an odd one with how things affect me.

Fatigue hasn't really affected me. I tend to nap after work and don't feel like going out often, but that may be more an affect of habit (all my friends are married so i don't usually go out late anymore or want to be home like 11pm). However, with that said, over the summer I often sit in my buddy's back yard till 3am having a few beers.

The biggest affect is my physical abilities. I'm a lot weaker than I used to be. I was lifting right after college. I was benching 210. Nothing spectacular, but a personal best for me. Then I moved and didn't lift for a while and tried to start back up a couple of years ago and just felt really weak. 100lbs seemed impossible. That weakness translated into work as well. I'm a carpenter and just couldn't seem to carry the same things I used to carry. Also, after carrying some heavier things. I lost my breath quickly and legs felt shaky after.

This really affected my ability to play pickup soccer too, which is my only outlet. My physical conditioning is terrible compared to before. I know its age too, as I'm 30, but it shouldn't be this bad.

Thats the biggest affect on my life. Some of the other symptoms were more an annoyance.

The second biggest impact is on my wallet since I don't have insurance. So much for getting out of debt.


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## webster2

Graves really raised havoc in my life, career, marriage, and social. I was undiagnosed for a long time.

I was cranky, mean, sweaty, heart racing, exhausted, unable to concentrate nor follow conversations. Seriously, I thought I was losing IQ points rapidly. Mood swings set in, and I nearly lost my marriage. Did I mention really exhausted?

Physical symptoms included the inability to fight any sort of virus. I had pneumonia and shingles often. Pneumonia is what finally triggered a thyroid storm and a diagnosis. For two years, I went to the GP often and was told it was menopause, even though I had a history of thyroid problems. My skin had really nasty lesions, all gone now!

I loss muscle mass. I was an avid cyclist. I am trying to build muscle and stamina now. It is a very slow process. I have not seen any results but feel better and am moving without pain.

Having Graves running rampant in my body was the worst I have ever felt. Besides feeling like I was losing my intelligence, I did not recognize the person I had become. Thankfully, I am beginning to return to my former self.

My husband is working on a post to explain his experiences of living with a person with full blown Graves. I'll warn you, it may not be pretty.

I decided on a completion thyroidectomy. I had had the surgery before and it scared me less than RAI. Plus, with RAI one appliction doesn't always work and it is not great on the eyes, if there is involvement. I have minimal TED.

125 mcg was the starting dose of Levothyroxine after surgery. I idn't convert well and now take 2 grains of nature-throid. Immediately after I began taking it, I had much better mental clarity. It is not everyone's choice but works well for me.

On the upside, I am beginning to feel better. I have gone GF to help keep the antibodies quiet. I didn't think I would ever feel well again, and am delighted to say it is possible.

TMI? I wish you the best. hopefully yours was caught early, and treatment will rectify the symptoms and they way you feel.


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## Lovlkn

John - things will get better for you once your medications get regulated. Your fatigue should improve significantly when you are "properly" medicated. Stick around, post labs and we will help you navigate your disease journey.

JPGreco - you're lucky to not be experiencing extreme hyper symptoms with your current labs -

I probably felt more like Webster - I was DX'd Graves disease and feel I had it for 7 years before being diagnosed having developed it after the birth of my first child. I was a raving maniac - thought it was working full time with 2 kids but when I quit to stay home with my kids the issues didn't let up. Relational issues were my biggest issue - I had issues with everyone and alot of hate/rage toward situations a normal person would just blow off. My marriage almost ended as my husband simply could not handle it any longer and about the time I was officially DX'd said he was going to leave - thankfully he stuck it out and this June we celebrate 30 years together (25 married). I went to the doctor alot for different symptoms and was always told I was depressed and they tried to put me on anti depressants - my husband called me a hypochondriac. Anxiety, rapid heartbeat, insomnia (which I still struggle with), hives, I also had shingles 1x,racing mind, irregular periods were the symptoms I had. I diagnosed a thyroid issue and it took 18 months for me to get a doctor to agree. It was my gynecologist who referred me to an endo.

Unfortunately once my anti thyroid treatment began I immediately was made hypo - regulating my meds included monthly blood tests and medication adjustments. After 4.5 years I gave up the anti thyroid route and possible remission for a total thyroidectomy - Ahhh. Life is much better now and what I would consider "normal".

Welcome to the world of menopause... the next journey.

Muscle pain was more intense during the anti thyroid treatment because they always kept me hypo - Once you get out of hypo your pains should resolve and your ability to workout and lift weights should resume.


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## Andros

John said:


> I'm curious to hear how this condition has affected or impacted lifestyles, careers, etc. I'm newly diagnosed but I'm dealing with a lot of lost time at work due to fatigue and other symptoms. I also feel like what started out as "extra energy" has turned into exhaustion that affects pretty much every area of my family, social and personal life. I'm hoping and praying my treatment helps things level out soon.
> 
> What about you? How has this condition impacted your daily life? Also, can anyone look back and see progress due to successful treatments that worked for you?


It was horrible. Fortunately, my husband was "with the program" and hung in there w/me. It was a long hard haul. We had to actually sell our business at the time as I could no longer hold up my end.

Life is good now!

You might find this interesting.

Graves', neuropsychiatric
http://www.ngdf.org/cms/modules/files/uploads/7699.PDF


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## rkh3

I have been dealing with this for over two years, I know to many I am a rookie, and the way it has effected my life would fill a few pages. There are similarities but everyone's experiences are different, yours will be as well. Graves impacts some greatly, others less so.
Just my opinion but you would be better off not reading other's symptoms and experiences and just deal with what this disease deals you.


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## desrtbloom

Graves' Disease has changed every aspect of my life, but in the end although I will never be the same, there is HOPE and things definitely get better. It all takes time, good doc's, the right treatment, and right meds. Don't give up! You are not alone.

:hugs:


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## John

Thanks for sharing your stories. I know we're all different, I was just looking for commonality in the struggles. I appreciate this community! hugs3


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## webster2

It does get better. Sometimes finding the right doctor is a little difficult because everyone is different and while blood levels may be in range, it might not be the best part of the range for the person to feel their best.

This board gave me the strength and knowledge to be able to find the right path. It is very reassuring to know that you are not alone.

Best wishes to you!


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## Paytonmascha

When I was first diagnosed with graves disease I didn't know what to think or do. I felt like I was the only one going through this especially at age 13. I struggled in school due to high blood pressure and not being able to concentrate. When people started to notice different things about me like why I always had bandages on my arm from getting blood taken, missing school frequently, going to the nurse a lot, not being able to participate in gym class, couldn't eat or drink certain foods and always being tired I just wanted to hide in my room forever because I was tired of people always asking what was wrong with me. Then when they heard I had graves disease the first thing they'd always ask 'does that mean your going to die?' and then I'd have to explain everything to them. It got quite annoying and I felt like nobody understood what I was going through. I was more self concious then I have ever been with myself when I got the bulging eye. I stopped wearing contact lenses becaus I felt my glasses hid my eye a little. It was frustrating for a while when i couldnt eat or drink certain things because i was told i couldnt have any artifical sugars but i have learned to deal with it and now i dont care. It really hurt me when people started rumors saying I made it seem worse than it was and only wanted attention. But now that I've had it for almost 2 years I've gotten through all the rough patches, I've learned to deal with it and everything has gotten alot better. I'm almost perfectly leveled off and hope to soon try getting of the medicine. It's probably easier for an adult to be told they have something like this because they don't have to deal with kids in school or anything like that. But in the end it's not as bad as it seems


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## webster2

PaytonMascha, I think you hit the nail right on the head, it must be easier for adults to learn they have Graves. I cannot imagine being told as a teen. You have a tremendous strength of character.

Having Graves, makes us tougher and able to appreciate "normal" mare than the average person. Hang in there!


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## Serenia

I was dx'd with Graves in January 2010 after I ended up in Hospital having a thyrotoxicosis storm.

The first year was tough - it took a while to get my medication worked out. I was feeling BLAH and horrible a lot of the time.

I went through another period of time last year when my medication again wasnt working, but eventually it has worked out.

I have also changed endos and this new endo is wonderful. The old one kept pushing me to have RAI. The new one has not said one word. My numbers are looking good. For most of this year I have been fine.

The family diet is healthier. We stopped using iodized salt and have switched to sea salt, and low salt or no-salt food.

Apart from taking my MMI at night time before I got to bed - graves is not affecting my life in any major way.


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