[vanillasky]

#1059481

I have been sick for 15 years and they kept telling me it was Hashimotos. I have boughts of hyper and hypo. I have been so sick so went to Cleveland clinic. Finally found a good endo! He ran thousands of dollars of tests and found GRAVES!!!!!!!!!!!

My TSI is 800

My TSH has been dropping steadily for months and someone finally listened to me. I start treatment November 19th. Would like to interact with people with Graves so I know what I’m getting into.

thanks,
Vanillasky

[Kimberly]

#1174959

Hello and welcome! I’m sorry it took you so long to get a proper diagnosis, but I’m glad that you found us. It sounds like you’ve finally connected with a great doctor. As you get started, you might check out the “Treatment Options” thread in the announcements section of this forum, and you can also use the “Search Posts” feature in the top right-hand corner of the screen to search for specific keywords/phrases.

Please check back and let us know how you are doing!

[vanillasky]

#1174960

thanks for welcoming me. Sometimes I feel very alone with this. People don’t even know what a thryoid gland is, let alone what Graves Disease is.

Husband doesn’t seem too interested and I have a friend that doesn’t understand. they get tired of hearing me complain about how hot I get, how much I sweat and the heart racing, not to mention getting so tired I could sleep for days.

My first endeavour is Tapazole, I guess. At least that’s what he said on the phone and then RAI, then if those don’t work, surgery is next. I shudder to think, but it would be nice to get my life back. I haven’t felt well for years and years off and on.

[PolishTym]

#1174961

A good doctor makes a huge difference, doesn’t it? When I lived in Ohio the Clinic had a great rep, in general. I’m glad you found the right doc for you.

[adenure]

#1174962

15 years?! My heart goes out to you. I was diagnosed with Graves after my 4th baby was born, but the doctors tested my thyroid levels with a bunch of other labs and it was fortunately caught early on. I only had symptoms for 4 months before I was diagnosed. The 2 latter months were terrible. I have a lot of respect for you and for the many who have been misdiagnosed and suffered for so long. I am glad to hear that you are on the path to getting better though!!! That’s awesome. 😎

I had surgery 4 1/2 months ago. Methimazole didn’t agree with my liver, so I chose surgery over RAI. I’m doing much, much better than when I was hyper. I’m not 100% yet, but I’m doing pretty well. The thing I notice most is that I just can’t do as much as I used to pre- Graves and I need to take care of myself more (not a bad thing!), but if I listen to my body, I’m usually okay.

Good luck to you & let us know how everything goes. It is hard, but it will get better for you!

[currietm]

#1174963

At least 20yrs for me! Maddening isn’t it?!?!? It blows my mind how ‘daily’ new people are diagnosed with this disease. I have been on Methimazole for about 5 weeks now and feel better than I have in my life! I have cut out hard core gluten (wheat and whole grains) and anything diet…. use real sugar sparingly and dairy sparingly. Have a med check next week and if levels are in good range its under the knife I go:) Glad you found out your problem. I bawled like a baby when I was diagnosed….. not that I have Graves but was so happy I had ‘something’ and it wasn’t all in my head cause next stop was the shrink!

[vanillasky]

#1174964

thanks everyone for writing. I really appreciate all the attention I am getting.

15 years of bad doctors is to blame. Nobody ever wanted to run TSI or TPO. My thyroid was hypo and then hyper. They would give me hormone replacement and I was using that for a while, then go hyper again! I’ve had uptake scans suspicious of Graves, but they always said “no, it’s Hashimotos/Hashitoxicosis” and “don’t worry, your thyroid will die and you will be okay.” Well, according to Cleveland Clinic, that is pure baloney.

My ultrasound shows a thyroid not ridden with Hashimotos. My TPO is either normal or just slightly elevated. However, TSI of 800? I freaked out! That’s when they told me I have a “subtle” Graves disease and if not taken care of, it definitely will get worse.

My symptoms for years have been:

depression
heart palpitations
heat intolerance ( dread summer, hate the sunshine)
sweating
nausea
hot flashes from hell that make me feel like I could explode
night sweats

Graves Rage, have a really bad temper somedays. I cannot believe what comes out of my mouth! It’s awful. Destroying things left and right and being told to see a shrink because I have anxiety and it’s all in my head.

Doctor (primary care) has me on Klonopin to keep me calm.

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