[cathycnm November 5, 2008 at 4:19 pm Post count: 284]

#1075587

Tiffany – Welcome. My daughter and granddaughter are in Alabama!

I think some of the moderators know more about eyes than I do – I do think it depends on severity of what is going on. Are your bulging or puffy?

Just wanted to welcome you to the group!

[Jeff_Thompson November 5, 2008 at 5:24 pm Post count: 3]

#1075588

Hi,
The book Living with Graves Disease by Mary J Shomon put a lot of things about this disease into perspective for me as the spouse of a Graves sufferer.
Jeff

[Ski November 5, 2008 at 5:34 pm Post count: 1569]

#1075589

Hi Tiffany,

Welcome, we’re glad you found us! And I’m glad you finally got a diagnosis ~ that’s half the battle.

Graves’ thyroid disease and Thyroid Eye Disease are two different elements of Graves’ ~ treating one does nothing for the other. So whatever you do for your thyroid, you will have a separate treatment plan (with an opthalmologist) for your eye issues.

The most common "disease curve" for the eye disease lasts about a year. It typically begins with changes that come on rather rapidly (puffiness of the tissues around the eyes, and/or increase in fat beneath the eyes, and/or bulging of the eyes), then there’s a period where changes stop happening, then a period where symptoms improve, and finally a completely stable phase. There is only a small percentage of patients who have the very worst symptoms of the eye disease, so if you’re looking online and seeing scary pictures, try not to panic (I know that’s not easy). If you are a smoker, typically the disease curve is longer (up to three years), and the symptoms are worse.

There are things you can do to make yourself more comfortable while your eyes are "having their day." Raise the head of your bed to minimize fluid collecting in your eyes overnight and exacerbating your symptoms (we put 4×4 pieces under the head of the bedframe), use artificial tears liberally (NOT "get-the-red-out" drops), minimize your exposure to wind and bright light (use sunglasses that are only marginally tinted for indoors, for instance, and use wraparound sunglasses for outside), use baby shampoo to wash your face (less irritation), wear less makeup, things like that. The opthalmologist should be able to give you some ideas there too.

Once you reach the stable phase, spontaneous small improvements are still possible. My eyes were never really bad, but they did change, and people noticed. I am now 10 years past my first symptoms, and my eyes are almost back to where I started ~ to the point that I think people who never saw me during the "bad part" might not notice any change at all. Some of the most recent changes happened just in the past few years. Unfortunately, there’s no way to tell how your eyes will be ~ the odds are in your favor, so try and focus on that. (Focus!?! Am I trying to be funny? ” title=”Cool” /> No, it just comes out that way…. ” title=”Very Happy” />)

I’m sure this isn’t everything I could possibly say ~ do a search in these posts and the archives, you’ll find a WEALTH of information and anecdotal advice.

Welcome, and come back often, ask all the questions you may have!

[aubie822 November 5, 2008 at 8:38 pm Post count: 13]

#1020004

Hey all! My name’s Tiffany and I’m from Alabama. Just this week I’ve been diagnosed with Grave’s disease. And I’m glad! Well, kinda. ” title=”Smile” />

I’ve had hand tremors for a while now, and I’ve avoided the doctor– scared it was a precursor to MS or Parkinson’s. While at the doctor for a virus this weekend, he looked at me and wanted to test my thyroid. Of course I was like "What the heck for?"

Now, a lot of things about me are making sense. I’ve noticed in the last year, in photos my eyes look weird. Now I know!! I also clear my throat a lot and have chronic sinus infections.

So, while it’s not great, and after the initial shock of having a "disease" I’m doing pretty well. I’m just here looking for support. They haven’t decided any of my treatments so far…so I’ll probably have a lot of questions. Till then, it’s all in God’s hands.

Only question I have right now, is will medicaiton/treatment will the odd eye look go away? I guess I’m just vain. ” title=”Wink” />

Nice to meet you! War Eagle!
T.

[aubie822 November 7, 2008 at 9:41 am Post count: 13]

#1075590

Thanks all!

Thanks Ski! Yeah, the pictures on the Web are creepy…they should not be allowed to post those!! ” title=”Smile” />

Mine are just noticable in photos…but now I know what’s going on, I’ve adapted my "pose" to remind myself to close my eyelids a little bit.

Update:

I’m waiting to hear from the "doc in the box" that found all of this to get my final diagnosis. I’m also meeting with my primary family doctor today to get everything transferred to him.

They’ve set up a CT/Nuclear scan for the 17th. Even though no one has really told me what’s going on. I’m guessing I’ll find out for sure today. I’m excited about getting this all to my primary doctor, so I’ll have one person (the doc in the box has five rotating docs) to turn to.

Thanks for your welcomes! As I said, I’m sure I’ll have more questions. This site is great!

Cathycnm–what part of Alabama are they in?

[cathycnm November 7, 2008 at 10:22 am Post count: 284]

#1075591

Tiffany – Glad to hear you are headed for continuity. I have a lovely, young female internal med PCP who is so personable and caring. She truly has been concerned about me and it shows. My endo is an older (retirement age) man with years of experience who prefers patient contact to a shiney office and was the only endo in a 100-200 mile radius for many years – now there are a handful. Sounds like an odd team – but they have complimentary strengths and that works well so far!

My daughter/granddaughter are in Montgomery. I live in Colorado but am doing my postmasters online through U South Alabama in Mobile. So, I have a couple roots in your state. Where are you?

[aubie822 November 7, 2008 at 4:57 pm Post count: 13]

#1075592

Well, I went to my primary doc today, this is what I found out:

1. He’s not so sure about Graves, but I’m def hyperthyroid. My thyroid levels are five times above the norm.
2. I have three nodes, one on the right and two on the left (I’ve already named them!)
3. My symptoms are mild…hand tremors, eye poofiness, light sensitivity, throat clearning.
4. After the Nuclear Scan, he’s going to get with and Endo and we’ll go from there.
5. he’s thinking RAI will be the best route, but I’m a little worried about that….
6. He also has the possibility it may be a viral infection.

Other than that, I’m good to go. My scan is on the 17-18th. I’ll feel much better after that to rule out and "C" word…you know, the cancer. But he says he highly doubts that’s the case. So, i’m just waiting for a week.

OMG! I’m in Prattville, just 10 miles outside Montgomery!!! What a SMALL world! I’m actually going to Montgomery for my scan!

[cathycnm November 7, 2008 at 6:17 pm Post count: 284]

#1075593

Tiffany – Wow – small world – my daughter is in Deatsville but closer to Prattville for shopping. I will be there over Christmas – time to buy tickets.

Sounds like you got answers and a plan! I felt better once we got that far!!!! BTW – if you need to do the low iodine diet for your scan – there is a low iodine diet cookbook you can get through Amazon. It is a little pricey but the recipes are good enough to keep using! It really helped me know how to shop and the food really was tasty. I bought my endo a copy for the other patients because I can’t imagine how many goofs I would have made without that.

[aubie822 November 10, 2008 at 2:48 pm Post count: 13]

#1075594

We may have to get together for dinner/lunch!!! Deatsville is just across the road!

After much thought and research, I’m thinking against the RAI treatment. I know its early, and we still have a long way to go, but it sounds like the side effects after RAI would be horrible. Since my symptoms are mild, I’m going to pursue the medicinal route first. I don’t think my doc will like this, he just kinda jumped on the RAI bandwagon, but my hubby works with someone who’s wife had the same thing, tried the medicinal route first and was fine within 6 months without the need for thyroid zapping.

I’m going to stick to my guns on this…I don’t want to have to be hypothyroid at 30.

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