[Laree08]

#1058836

Hi everyone my first time on this board! I was recently diagnosed with Graves Disease and TED : ( I started to notice something wrong with my eyes in Decemeber. My eyelids were puffy and they just wanted to close. They weren’t red or irritating, so I assumed they were allergies. I didnt know what else to think. The begining of January I notice the “bug eyed” look and I got concerned. I made an appt. with my Dr. and she did a complete blood count. They called me back in two days saying everything was normal except my thyroid was above normal.
Triiodothyronine (T3), Free 2.67 [2.18-3.98] pg/ml
Thyroxine, Free 1.34 [0.76-1.46] ng/dl
Thyroid stimulating hormone 0.588 [0.358-3.800] mcIU/ml

I have no idea what these numbers mean. I guess they’re high. Anyway I went to see an Endo and he prescribed me Methimazole 5mg. He gave me a low dose cause he said I might go Hypo with higher dose! what the?!?!? I also went to see Eye doctor and I had A CT scan with and w/o contrast. I was going nuts in the roomm because I didnt know if I was allergic to Iodine and shellfish. UGH!! I got my results back and said I have swelling behind the eyes. The doctor will review and call back today or tomorrow to figured out what types of treatment I will need. I am sooo scared!!I dont know much about Graves disease or TED so I was wondering if I can get some advice. I am really scared about my eyes. It has protruded a little, my doctor say she doesn’t notice it. When I smile one can’t tell, but I can’t smile all the time. Does it start of slow then gradually protrude out? I get pain and pressure around my eyes and Im scared that its protruding more. : ( I put eye drops in morning and night and it helps a little. what were your experience with TED? and what treatments did you use?Did anyone eyes return to normal or close to normal? Im having a difficult time excepting this : (

[Kimberly]

#1170313

Hello – I’m sorry to hear about your diagnosis, but am glad that you found us.

Most Graves’ patients have *some* degree of eye involvement, although the good news is that most patients will not experience the worst of the eye issues.

Thyroid Eye Disease (TED) typically goes through distinct phases. The period where symptoms are getting worse is referred to the “hot” phase. Once the “hot” phase is over, there is usually some improvement in symptoms…and then things eventually level out and stop changing. (This is referred to as the “cold” phase). If you reach the “cold” phase and still are having problems, there are surgical procedures that can be done to restore eye appearance and function.

During the “hot” phase, the treatment approach is usually “wait and see”, unless you are experiencing compression of the optic nerve. (One sign that you might have issues with the optic nerve is if things that you know should be red suddenly start to look more orange/brown.) Other than that, patients are generally advised to use preservative-free eye drops to help with dryness issues. TED changes the consistency of our tears, and in some patients, the lids might not close all the way. Some patients find a bit of relief by using warm or cold compresses. I’m also starting to hear more about sodium aggravating eye swelling.

As for your labs, we’re just fellow patients here, not doctors. However, here is some general info. TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more hormone or tells the body to put the brakes on thyroid hormone production. When things are working properly, the amount of TSH produced by the pituitary depends on a “feedback loop” according to where our actual thyroid hormone levels (T3 and T4) are. If T3/T4 levels are *low*, you should see the TSH levels *increase* in order to prod the thyroid gland to make more hormone. If T3/T4 levels are *high*, then you will see TSH decrease to tell the body to stop making more thyroid hormone.

We do recommend that you get hard copies of your labs so that you can see for yourself what the “normal” ranges are and where you fall within those ranges. (Too high? Too low? Pushing the upper or lower end of “normal”?)

Hope this helps — please keep us posted!

[Laree08]

#1170314

Thank you Kimberly for the info : )
The eye doctor called saying there’s not much they can do except eye drops in morning, through out the day if needed and night. I have to keep my thyroid levels in normal range and keep taking my meds. So they had to let me go and said if eye drops don’t work call them. Well I have a doctors appt coming up and I’m going to ask her to refer me to Shiley Eye clinic in San Diego since I’m only 30min away. I Also have have endo appt at end of this month to see where my levels are. I have question if you have headache what do you guys take? I’m scared to take anything because I feel it will worsen the eye condition? Also, do you guys take meds and vitamins at same time or meds first then vita later? I will keep you guys posted. Thank you for this message board. : D

[Bobbi]

#1170315

With the eye disease, you cannot hurt things — so far as I know — by taking other medications. You do need to make sure that whatever meds you are taking do not interfere with one another, but this is true of all meds. To check whether or not any vitamin or supplement you are taking could interfere with your meds, the best person to ask is your pharmacist. I do not know of any problems, but a pharmacist is trained in drug chemistry, and if perchance he/she does NOT know the answer, there are reference materials at hand that they can, and do, use to give us advice.

I took my normal pain reliever when I was in the middle of the eye disease. But, again, check with your pharmacist, because you might be on different meds than I was.

Please try not to panic about the eye disease. I know, that’s easier said than done. I’ve been there, and I panicked. I’m pretty sure every last one of us who have turned up with the disease have panicked early on in the process. But, insofar as you can, take a deep breath and relax, and deliberately DO things that help, in general, to keep you as relaxed as possible: put yourself in situations where you laugh; get some exercise that you enjoy; take warm bubble baths; etc. Getting “some” eye disease does not mean that you will go on to have horrid eye disease. It is totally unpredictable. Deal with what “is,” as far as you are able — not with “what might be.” What “is” is so totally enough to manage; what “might be” is impossible to manage.

Hugs,

[brawson]

#1170317

Please share your experiences at the Shiley Eye Center. I have been contemplating making an appointment there for second opinion. I live in Northern CA. but have relatives in Orange County. I read on their website that they treat the whole person and have done some research on the psychological impact of TED. I would be interested in hearing how it went for you.

Barbaraq

[Laree08]

#1170316

Thank you Bobbi! : ) I’m trying not to stress over it, it’s hard, but I’m trying I have loads of Dr. Appt coming up. I feel like it’s my second home- used to be the mall.. Haha.
I know the eyes are different for everyone, but I was wondering if stress triggers it more? I’m doing things to help calm me down yet I still feel the pain and pressure. I do have appt at Shiley eye center next month and with neuro eye dr soon. I know I’m in this for a looong time 1,2 or 3 years?? UGH!!
Barb- I will definitely keep you posted with my experience at Shiley. : )

[Kaylasly]

#1170318

I am not sure what phase I am in with Ted but I am 2 years into it. I have hypothyroidism with Hashimoto’s and TSI antibodies. I have gone to Shiley Eye Center, I was not impressed! It is just students coming in and taking notes and they don’t really tell you anything, then the doctor comes in for a rushed visit and doesn’t really tell you anything either. I think it is because they don’t know a lot about TED and they are trying to figure it out. It is a very frustrating and debilitating disease. I am a lot better than I was two years ago but I still have problems with my eyes and they have never felt or looked the same. I still have bags under and above them. It is very frustrating and needless to say, ugly! Thyroid disease has robbed my beauty! Not that I had a whole lot of it. If you don’t have good insurance don’t waste your money, TED has to resolve on it’s own.

[Kimberly]

#1170319

@Kaylasy – I took out the Dr. name from the above post, as we prefer that specific names are communicated via private message rather than public posting on this board. To PM another user, find one of their posts, and then click the “PM” option, which is in the grey section to the left of the post. (A few lines underneath their screen name).

Fortunately, I don’t have *severe* TED, but I can still relate to the appearance changes. If I look at current pictures vs. those taken pre-Graves’, it is definitely discouraging!

As for TED treatments, unfortunately, the whole process is mostly “watch and wait” until we enter the “cold” phase and are candidates for surgery. (Unless there is an immediate threat to vision, in which case surgery will be done more quickly).

Right now, there is a lot that isn’t understood about TED, but I do know that the team at Shiley is one of those that is very active in research to try and find ways to help patients with TED.

They were actually one of the first to look not just at the medical aspects of TED, but also the emotional burden as well.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://archopht.ama-assn.org/cgi/content/full/123/4/491

Wishing you all the best as you continue this journey.

[Author]

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