graves disease & thyroid info anyone??

[izzy3usa2002]

i went yesterday for my nuclear thyroid scan adn it showed i have graves disease. the doctor gave me thyroid meds and said to try that and then if that doesnt work they will kill the thyroid with radiation. the doctor told me even with thyroid treatment my dry eye may not go away so i am really down now. i guess i will hope and pray for the best and that the thyroid meds work and releive my dry eye. the doctor did seem to think it would releive it a bit if i doesnt go away. anyone out there have a graves disease success story for me?

[Lucy]

I have a Graves disease story but it's not related to dry eye. My daughter was found to have Graves disease about a year after being diagnosed with Type I diabetes. (Insulin dependant) Both are autoimmune diseases. She was in her mid-20's at the time and because she had not had children, they removed the thyroid as opposed to using the chemical cocktail on her. She has done fine and does need to take Synthroid or something like it. A good friend of mine had the chemical cocktail and she has been fine for many years. Sorry I can't tie any into dry eye, but if no one else replies, you have these two cases. Lucy

[jads]

izzy, I am assuming you have all the other symptoms of Graves as well if you've been diagnosed? Having been treated for Hashimotos Thyroiditis, one of my symptoms has been drye eye and inflammation for several years preceeding the onset of hypothyroidism.

You might find this site useful, both with help on Graves and also as it relates to Thyroid Eye Disease. (TED) www.elainemoore.com

This is also a specific TED article I found. This kind of information from my opthamologist would have been very useful 18 months ago! Having done a lot of reading on how eye inflammation relates to the Thyroid and metabolic issues, I find the parallels that can be drawn between both conditions, very interesting. There is a lot of literature suggesting that both conditions have risen dramatically in occurence in recent years - that is, Thyroid conditiions and Dry Eye.

http://www.suite101.com/blog/daisyelaine/1074

Best of luck with your treatment.

Jamie

[mclaire66]

i just had a possible diagnosis of thyroid eye disease this week, waiting for blood test to come back but my thyroid test was normal as of this past november, he said you could have eye symptoms and still have normal thyroid levels which is confusing to me (how can it be thyroid eye disease if thyroid is normal? i am reading eye symptoms can develop before thyroid levels are abnormal tho) he called it graves opthamology too but from what i understand that is what develops in people with graves disease? and if graves is a hyperthyroid condition i know i don't have that because if anything my symptoms are hypo--i just don't understand how they treat it if the thyroid levels aren't off, if they are they can give you meds but if they're not they just try to control the inflammation with steroids? and the progression of it is so all over the place, i'm reading it could "burn itself out" in a few months and go into remission for ten years or it could progress to the point of being incapacitating and requiring surgery--dr wasn't great at explaining any of it but now that i've done a little research i'm a little more prepared to talk to him when he calls with the results, just wondering what anyone else's experiences were with so-called thyroid eye disease with normal thyroid levels? and how they know for sure that's what it is just based on an eye exam?

[jlg_uk]

I've very recently been diagnosed with "probable Thyroid Eye Disease" and I am hypo (my TSH was 30!). My understanding is that this is not exactly the same as Graves Disease (which I think is hyper only), as TED is not Graves Disease, though it is also known as Graves Ophthalmopathy which I think is confusing. If you have Graves Disease you may very well get TED.

I don't have proptosis, but apparently that's not necessarily good as "People with least sign of cosmetic changes may experience the most serious complications".

Still, at least I have an explanation of the cause of my DES, and the eye muscle discomfort etc.

Apparently, there are two types of TED:

- related to wrong levels of thyroid hormone (milder form)
- congestive form caused by immune system changes (potentially more serious, still related to Thyroid)

There's also different phases of the latter:

- active,
- plateau
- resolution

Also, if you start to find your colour vision affected, this is an emergency due to potential optic nerve compression.

http://en.wikipedia.org/wiki/Graves'_ophthalmopathy

[izzy3usa2002]

Thanks everyone! I am still hanging in there with this Graves disease. They started me on thyroid meds and we will see. All I can say so far is i dont have to patch my eyes shut anymore and i am not always sitting around with a rag on my face so I guess you could say a bit better thought far fron being healed. At this point I do feel I am learning to cope with my DES better. I make sure I keep drops in my eyes I like Soothe XP with the mineral oil in it. I use the genteal gel through the day and night, I sleep with Tranquil eyes goggles and wear padded wrap around sunglasses. I make all smokers go outside and away from me. If it is windy i close my left eye when walking as it is the worst. When I get pain I apply ice. it takes the pain away quick. My eyes do stay open all day now and I am making it through work a bit better. The doctor want to do that radioactive iodine on me but I have read where it makes the dry eye worse and thats the last thing I want. lucky me i have severe dry eye and a severe thyroid disorder lol

[Lucy]

Most of us have more than one thing wrong, unfortunately, izzy. I've just got Sjogrens, Fibromyalgia, dry eyes, and a two time cancer survivor. Things can always get worse. I just heard tonight that my sister's cancer is inoperable. I didn't mean to throw cold water on you, but often we don't know when we have it good.

My daughter had Graves disease and they did remove her thyroid and she takes meds for it. She has not complained about dry eye in the 12 years since her T surgery. Lucy

[izzy3usa2002]

thanks lucy for the info on your daughter i my hve the surgery. yes i am very thankfl and yes it can always be worse thats what i always figure. i have lots of diseases thus graves is just another and i am sure i will get it under control someday but i am always glad i dont have anything terminal. glad to hear you survived your cancer.....my sister did too! i am just confused about the thyroid treatment i hear if you kill off or remove your thyroid then you have underactive thyroid because you dont have one? i think i am just afraid to have the rai or surgery done. but im about ready to go for it maybe it would cure my eyes. take care

[izzy3usa2002]

lucy, i am alsovery sorry to hear about your sister i hope things go better.

[izzy3usa2002]

lucy in your june 12ht post you said your daughter had graves but not dry eyes and she had surgery then in your last post you say your daughters eyes hadnt been dry? did she suffer dry eye with graves or not? please clarify. thanks!