# Anyone else with Graves Disease for 10+ years?



## jumpingbean (May 29, 2012)

Hi all. I've been to this board a few times over the years. I was first diagnosed with Graves Disease way back in 2002. It went away for a few years (between 2006-2010) and then came back with a vengeance in 2012. I'm currently just taking a low dose of PTU to try and help keep things in check. I haven't had my levels tested for a few months but over the Summer, my TSH was undetectable and my T3 and T4 were both higher than they were supposed to be; the T3 by quite a bit.

Doctors have been telling me for years I need to do the RAI but I have a family history of diabetes and I have the gene for late adult onset type 1 diabetes (I had gene testing a couple of years ago). I'm scared to gain weight because I do not want to get diabetes. My mom passed away last year at 66 from cancer but she'd been diabetic for years and had lost her sight and two of her toes. I have a strong family history of diabetes; everyone that I know of on my mom's side had it and died fairly young due to diabetes complications or cancer.

Just wondering if there is anyone else out there who has been dealing with GD for a long time. Are there any options besides RAI? I feel like we really get the shaft. Most other illnesses can be cured or managed; with GD you simply trade it for being hypo. I feel like it's such a crapshoot and I'm not excited about any of the options, to be honest. Thanks for reading.


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## webster2 (May 19, 2011)

My endo feels I have had undiagnosed Graves since my first thyroid surgery in 1990. In 2011, I had a thyroid storm and that bought about a diagnosis. The remaining half was removed. I have not gained any weight. I exercise pretty heavily every day because I like it not with the intention of losing weight. My dad and 2 brothers have type 2 diabetes. My blood sugar levels are not even close to being diabetic.

I finally feel well mentally and physically. Graves did a number on me and I am glad to be beyond that.

Best of luck to you with your decision.


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## StormFinch (Nov 16, 2012)

I believe I've had Graves since I was a preteen. I know I had the mitral valve prolapse, fast heart rate and anxiety back then. I wasn't actually diagnosed until my early 40s, and first I was diagnosed with Hashi's. My thyroid had spluttered to a standstill and I started putting on weight, sleeping most of the time, etc. and had a TSH of 64. I chose thyroidectomy both because it has a more immediate effect than RAI (it takes time for RAI to kill off all or part of your thyroid and medication will need to be adjusted for that.) and because I have minor eye related symptoms. Studies have shown that RAI is more prone to making eye attacks worse.

Since I had my thyroid removed 9 months ago, I've actually dropped about 12 pounds. I spent most of my life underweight and unable to gain. At one point in my early 20s I weighed 100 pounds at 5'8", though typically I weighed somewhere around 115. When I was diagnosed with the Hashi's I had just tipped the scale at 165 pounds and I fluctuated around that area through phases of both hyper and hypo. I was 162 just before the surgery, and now weigh in at 150.

Whether you choose RAI or thyroidectomy, one of your most important choices should be in physicians. Before making a decision, be sure that you have a doctor lined up that is comfortable treating thyroid conditions, believes in looking at more than just the TSH and optimally treats by Free T4 and Free T3 instead, and would be willing to prescribe dessicated hormone if you need to go that route. I'm of the firm belief that a lot of hypo weight problems can be attributed to doctors who treat by TSH alone and are either apathetic toward or afraid to let their patient's TSH fall anywhere near the lower lab ranges, so they keep their patients undermedicated. If I had picked a doctor that treated by TSH alone I would currently be severely hypo. Although I was on a relatively low dose of synthetic for my weight for the first 16 weeks after my surgery, my TSH never came up into range even though my Frees both showed below their perspective ranges, and it is in fact still at hyper levels.


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## Lovlkn (Dec 20, 2009)

> Doctors have been telling me for years I need to do the RAI but I have a family history of diabetes and I have the gene for late adult onset type 1 diabetes (I had gene testing a couple of years ago). I'm scared to gain weight because I do not want to get diabetes.


I figure I have had Graves about 20+years.

When I first went onto anti thyroid meds I gained 4lbs. After 4.5 years on those I opted for surgery to remove my thyroid and was a complete wreck about weight gain. Since my surgery I have gained another 4lbs - this could all be my diet as - even though I am almost 50 I refuse to watch my calorie intake. My BMI is still only 22.

As long as your thyroid levels are in good range weight should not be an issue.


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## Andros (Aug 26, 2009)

jumpingbean said:


> Hi all. I've been to this board a few times over the years. I was first diagnosed with Graves Disease way back in 2002. It went away for a few years (between 2006-2010) and then came back with a vengeance in 2012. I'm currently just taking a low dose of PTU to try and help keep things in check. I haven't had my levels tested for a few months but over the Summer, my TSH was undetectable and my T3 and T4 were both higher than they were supposed to be; the T3 by quite a bit.
> 
> Doctors have been telling me for years I need to do the RAI but I have a family history of diabetes and I have the gene for late adult onset type 1 diabetes (I had gene testing a couple of years ago). I'm scared to gain weight because I do not want to get diabetes. My mom passed away last year at 66 from cancer but she'd been diabetic for years and had lost her sight and two of her toes. I have a strong family history of diabetes; everyone that I know of on my mom's side had it and died fairly young due to diabetes complications or cancer.
> 
> Just wondering if there is anyone else out there who has been dealing with GD for a long time. Are there any options besides RAI? I feel like we really get the shaft. Most other illnesses can be cured or managed; with GD you simply trade it for being hypo. I feel like it's such a crapshoot and I'm not excited about any of the options, to be honest. Thanks for reading.


This is an unfortunate disease (aren't they all?) I went undiagnosed for over 20 years. And boy, am I glad that I had the RAI. I did the Tapazole thing for 2 years and it was horrible. I did not have one well day.

The only other option is surgery which I do recommend. I was not in a position to have surgery but would have if I could have.


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## annamac (Oct 1, 2013)

Hallo, I got Graves way back in 1977,had what I call the radioactive iodine drink. I had a terrible time after that trying to get regulated. All goes well for a while then BOOM and everything falls apart again. Side issues have included a detached retina in one eye ( operated on in time to save my sight, thankfully). I have Osteopenia and high blood pressure now, but then given my age I probably would have anyway! Overall just glad I have got this far,when it's good, it's really good but this hypo behaviour is hard on my poor hubbie. Good luck with your decision.


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## Lovlkn (Dec 20, 2009)

annamac said:


> Hallo, I got Graves way back in 1977,had what I call the radioactive iodine drink. I had a terrible time after that trying to get regulated. All goes well for a while then BOOM and everything falls apart again. Side issues have included a detached retina in one eye ( operated on in time to save my sight, thankfully). I have Osteopenia and high blood pressure now, but then given my age I probably would have anyway! Overall just glad I have got this far,when it's good, it's really good but this hypo behaviour is hard on my poor hubbie. Good luck with your decision.


When I am hypo - my blood pressure and cholesterol both go up .

Have you been tested for low D for your osteopenia? I have that as well.


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## webster2 (May 19, 2011)

I have osteoporosis. Another great reason to work out!


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## jumpingbean (May 29, 2012)

webster2 said:


> I have osteoporosis. Another great reason to work out!


My primary care doctor referred me for a bone density test and they said my hips are slightly weak for my age (I'm 39). I know what you mean about working out; I try to do weights a couple of times a week because it's supposed to be good for your bones.

It's interesting (and unfortunate) how so many people with Graves also have other health issues and/or diseases.

I'm absolutely terrified of the diabetes after watching my mom lose her sight and her independence at such a young age. She completely lost her sight by the time she was 55. 

However, I'm feeling crappy because of the GD so I will get a referral from my primary care doctor for an endocrinologist to get the ball rolling for what I will assume will be RAI. I don't think the PTU is working and I'm worried about my liver. My enzymes are slightly elevated even WITHOUT taking PTU so I'm sure they are on the high side now. I actually visited a surgeon a year ago who said I was probably a better candidate for the RAI and not surgery.

It's great to hear that so many of you feel better and that you did not gain weight. My concern about the weight is strictly due to the potential for diabetes and not due to vanity.


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## webster2 (May 19, 2011)

I think what ever method you choose to rid yourself of that nasty thyroid, you will be amazed at how much better you'll feel. It took awhile for me but I feel great!


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## StormFinch (Nov 16, 2012)

If you'd rather have it out than do RAI, keep searching for a surgeon that will do it. I was severely hyper when mine was removed, so much so that they had upped my MMI to 40 mg per day. (equivalent to about 600 mg of PTU) My surgeon was head of the endocrine oncology department at a teaching hospital and didn't even blink an eye, so there are definitely doctors out there that will do it.


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## kristiemarie (Oct 7, 2013)

Diagnosed in 2003 but had it before then. Just took 2 years to figure it out. Finally had a TT a few weeks ago.


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## annamac (Oct 1, 2013)

Lovlkn said:


> When I am hypo - my blood pressure and cholesterol both go up .
> 
> Have you been tested for low D for your osteopenia? I have that as well.


By low D, do you mean Vitamin D? I use a 3000mg spray supplement every day. My daily Eltroxin has been increased from 75mcg to 100mcg - the palpitations have stopped, had one very bad day couldn't do anything but stay in bed but things have improved since then. Intermittent tingling in my arms/hands, lefthand in particular,which I think be due to calcium in some way but not sure..... Seriously considering asking to be referred to an endo clinic in case things become more complicated. I don't want to have to spend any more money on consultants i.e.cardiologists etc. Walking for about 40 minutes daily. Have you any advice on managing this Osteopenia? Thanks.


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