Hello to everyone.

Thank you for the replies. I have read them all, and I appreciate your time and your advice.

I've come to the conclusion that I need to stop reading so much about GD, at least right now. I know I really need to try and keep things positive, but I've been feeling really depressed the last couple of days. I keep telling myself that it's not the end of the world, that the diagnosis could have been much worse, but that only goes so far in making me feel better. I'm wondering if I'm expecting too much from myself since I just found out last week. This feels like a “grieving process” because my emotions are all over the place. One minute it's denial, then it's anger or something else. It seems to change every other minute. I'm not freaking out, but occasionally I feel like I'm not far from it.

Anyway, I think the best thing for me to do is to stop reading all the miscellaneous crap online about GD. I'm not talking about this forum, just the obsessive behavior of constantly searching for articles and whatnot via Google. And I think I should stop trying to make a decision about which treatment I want to pursue “right this minute” because it seems like a waste of energy and nerves until I've seen an endocrinologist.

Otherwise, I still want to come here and ask millions of questions. Feel free to tell me to shut up if I need to hear it.

I don't have anything else to ask about TED because that's also a waste of energy and nerves until I get a proper diagnosis from a specialist. By the way, I wasn't aware that a person's eyes could also bulge due to a malfunctioning thyroid … I thought you either have TED or don't, if you know what I mean.

I took your advice, Bobbi, and bought myself some preservative-free eye drops. Genteal. I don't like them, though, and I've only used them a couple of times (my eyes haven't been bothering me much the last few days). They make my vision blur for several minutes after I use them, and my eyes still feel dry. Additionally, the box says they create a “preservative free environment”, a description which is a little confusing to me. Is that the same thing as actually being without preservatives?

What's the deal with Tapazole? Works? Doesn't work? I don't know if I mentioned this already or not, but I was given prescriptions for a beta blocker and Tapazole. Initially, my doctor said she was going to give me a beta blocker, but she didn't add the Tapazole until I asked her if there was something I could take to feel better until I made it to a specialist. Then I promptly went home and searched for info on both. Subsequently, I decided I don't want to take Tapazole, and I haven't. I called her office the very next day (last Friday) to see if I MUST take it right now, but I've yet to hear back (calling them again tomorrow).

I figure I will have to take it whether I like it or not. Seriously, my hair has already gotten thinner, am I going to lose more of it on that drug? I didn't bother to read anything else on the side effects since that was enough of a drag on its own. (The beta blocker works great, as far as I can tell. I noticed a significant difference in how I felt a few hours after the first dose.)

What about vitamin D? Do I need to be taking supplements or something?

Last question for today: once I get my thyroid under control (whatever method I use), will Graves continue to damage my body? Since Graves is an autoimmune disease and the thyroid dysfunction is only one symptom, does that mean the Graves will still continue doing its thing in other areas? I hope you understand what I mean by that since I'm not sure how to properly phrase it.

Hi Ginger, I'm sleepy tonight, but wanted to answer your post, at least take a first stab at it!

I like your 2nd and 3rd paragraphs! Good decisions.

1. Preservative free eye drops are always in single dose containers. Drops with preservative in them are usually in little bottles with the equivalent of lots of eye drops in them. So, like everything else, Genteal has 4 different kinds of eye drops. Unless you have single dose little plastic things (usually called single use), and the box should say ‘Genteal PF (for preservative free.) you don’t have preservative free eye drops. Probably you don' thave preservative free. The “preservative free environment” seems to me like deceptive advertising.

2. I remember in prior posts when you said you got only a beta blocker. Somewhere in responses, I think I suggested you ask if there were another medicine she had intended to give you and you should check. Apparently you did, and she prescribed the Tapezole.
OK-That is an anti-thyroid drug (ATD)the generic name is methimazole, and that is the same thing that people on this site are referring to, and most of them are on it when they are first diagnosed. It is ALSO one of the three treatment options that you are not ready to think about yet.
So, rather than writing all again, I have copied and pasted what I wrote in the first post after you joined. I suggest you take a look at that post, then read the reference I mentioned. I think you will begin to see that Tapezole, methimazole, the same ATD, is the essential drug that you should be taking to get your Graves' under control. As always, check with the next endo you seek, or call the office of the doc who prescribed it, OR (a very good suggestion) go the pharmacy, pick up the medication, and ask the pharmacisit to explain to you what it does.

Following is what is from the first post:

"http://www.womenshealth.gov/publications/our-publications/fact-sheet/graves-disease.cfm#a [womenshealth.gov]

After you read that, it will make sense that the first step is to tell the thyroid to stop overproducing the thyroid hormone that causes our symptoms.
This is usually done by ATD's (anti thyroid drugs_ and a beta blocker (cardiac drug) if needed to slow our heart rate if we have a fast heart rate. Untreated Graves' has the potential to be dangerous, but fortunately it is easily managed and you will feel good again."

My comment to your decision on whether to take the tapezole? I suggest you take it, after you learn why it is so important, and why it has been prescribed.

3. Brief thought about Vitamin D-I live in a place where the sun does not shine much for a lot of the year. For that reason, I do take Vitamin D. This is an easy answer to find, for there is a lab test that tells you if you have enought Vitamin D. Ask to have it done. Lots of other people take lots of vitamins and supplements, Graves' or no Graves', but I am of the school that I eat well and get them that way.

4. Last question. Will Graves' continue to damage you body after it is under control and you have your treatment. No, it won't, provided you follow whatever plan you have chosen.
If however, someone decides to stop taking their thyroid supplement, or stops taking their ADT, they will be in doo-doo pretty fast and be sick again. We will always have Graves' but it won't always rule out lives. But it is part of our lives in that we can't decide to stop taking medication if it is prescribed.
4.1. The definition of Graves' as an autoimmune disorder or disease is that it impacts the thyroid gland. But not other glands or organs. Equivalent thoughts are diabetes+pancreas, Crohns=bowel,thyroid eye disease+eyes and eye muscles.

Ok, that's it for tonight! Have a good sleep. When is your next appointment,Did you make it? I hope.

Hello - A couple of notes to add to Shirley's great info…

Autoimmune thyroid disease can potentially be associated with low Vitamin D, but excessive levels can be dangerous. Before starting on Vitamin D supplements, have your levels checked via a blood test and if needed, work with your doctor to determine an appropriate level of supplementation.

At our Boston conference last year, one eye doc mentioned that the “preservative-free in the eye” drops were acceptable. Apparently, there is a preservative chemical that breaks down when it is exposed to air. (I'm not smart enough to understand the process!) You definitely do NOT want the “get the red out” kind of drops. Keep in mind that the stronger the drops (i.e. designed for “moderate” or “severe” versus “mild”, the longer you will deal with initial blurriness. I reserve the severe gels for right before bedtime.

Graves' can affect the thyroid, the cells and tissues behind the eyes, and more rarely, the skin on the front of the shin. These issues can occur independently – for example, you can potentially have eye issues, even though your thyroid hormone levels are in balance.

Hair loss typically happens when our thyroid hormone levels are in the process of swinging higher or lower. Once you get to normal and stable levels, you should see this problem correct itself.

Take care!

Great stuff Bobbi, for everyone.

Great stuff Bobbi, for everyone.

Hi! I was just diagnosed in October and I want to offer some reassurance that things do get better. It may help to know that you can attribute your depression to your GD. When I was diagnosed with hyperthyroidism (they didn't label it GD until my thyroid uptake and scan showed enlargement and no nodules) my PCP insisted that I get in to see my endo immediately and even called the endo to arrange it, but the scheduling nurse didn't get the message and said I couldn't get in for 2 months. From the way my PCP was talking (I guess my test results were pretty bad) I was convinced I might die before the endo could see me. I spent an entire afternoon crying, but the next day I called everyone I could think of until I got it straightened out.

Regarding reasons why surgery wasn't suggested to you: There may not be any surgeons in your area who do thyroidectomies on Graves' patients. I was offered all three options (RAI, surgery, or drugs,) but after I chose surgery, I learned that my endo doesn't actually know of any surgeons here who would do the surgery. I did actually meet with a surgeon, and he explained that the surgery is harder when the thyroid is enlarged.

One note about the methimazole: When I chose surgery, my endo immediately put me on methimazole because it's dangerous to have surgery when you're still hyper. Your thyroid hormones need to be in the normal range before surgery can be scheduled. On my way out the door, I asked what would happen if I changed my mind and decided on RAI. My endo told me that I would have to go off the methimazole for a while before RAI could be scheduled. So definitely take your beta blocker, but if you are in a big hurry to have RAI, you might want to check with your endo before starting on the methimazole.