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If you can, please take a deep breath. I know that seeing eye changes is scarey. But if you can, try to relax a bit.
Now that there are soft-imaging techniques available, many many doctors think that ALL of us with Graves get “some” eye muscle changes. The vast majority of us don’t see any overt symptoms, with the possible exception of the more prominent fat pads which are some of the first signs of even slight muscle enlargement.
Getting “some” changes does NOT mean that you will inevitably go on to get horrid eye disease. There is no predictable progression of that disease. And most of us stay with minor, often unnoticeable eye changes.
As for there being nothing you can do — that’s pretty much on target. There are interventions that can be done IF the problem progresses, but they have really severe side effect potential, so our opthamologists do not intervene unless the consequences of not intervening are worse than the consequences of the side effects.
The eye disease has a “hot phase” during which we see the development of symptoms for a while. That lasts, on average, about 18 months I believe. After that, there is typically a remitting of symptoms — i.e. our eye symptoms get better. Take my experience: I developed protruding fat pads and intermittent double vision. The double vision was a real problem, as I couldn’t safely drive my car, and I was quite upset that the doctors were not “doing” something. But once the hot phase went away, so did my double vision. Now, I only get double images if I am very tired. So, I now understand why the doctors prefer to wait and watch — as terrifying as that was.
I hope this information helps a bit.
Bobbi — NGDF Online Facilitator
I am so sorry about all that you have gone through. I know how you feel about your eyes. My first real symptom of Graves was waking up with my eyes swollen from the brows to the top of my cheeks. It eventually went down. I had some muscle thickening–hard to look up and to the sides–as well as a little protrusion, and my eyes were very dark underneath. Every morning I would be afraid to look in the mirror. EVERYTHING improved. You really can’t tell that I ever had any eye problems except for a little puffiness, and its really not bad. I also had dry eyes and even that is better. I only have to use drops a few times a week as opposed to ointment at night and gel a couple of times a day. Most people do not have severe problems. I know it is difficult not to know what to expect, but try to stay calm and not worry. You will be ok. I would put a cold wash cloth or frozen peas (in a baggie) on my eyes to help them feel better. Sometemes a warm washcloth felt best on them. I hope you will be feeling better soon.
I was diagnosed with Graves disease on Feb. 18, 2006. I experienced extreme muscle loss, goiter, irritability, sweating, all of that. I went to the hospital because I thought I was having a heart attack-as my heart was racing at 169 beats per minute. I stayed in the hosp. for five days, and was diagnosed with Graves. I started on 5mg. of methimazole, 3 times a day. Seems I felt better. Then just a little over a month after that, I became pregnant. I swithched to ptu, which didnt seem to help much at all and the symptoms that had seemed to subside, returned again. I shortly thereafter had a miscarriage on april 18, 2006. A week or so before the miscarriage, I began to notice some eye symptoms. No actual vision problems, but it seemed to me I was getting bags or dark circles under my eyes. I made an appt. with an opthomologists right away, had an exam and he said everything seemed to be fine, didnt look like Greaves eye disease, but he would schedule me for a ct anyway. Over the next month my upper eyelids in the corners toewards my nose, began to puff out as well. Still no vision problems, but alot of puffiness. Doc said my ct did reveal some muscle damage, and that we would just have to watch. He said ther was nothing I can do, no medicines to take, no treatment. And that even of the disease gets better, whatever damage that is done to the shape of my eyes is irreversible. I have been a basket case ever since! I dont know what to expect, what will happen next. Will I just puff up and bulge ou? Will I go blind? Can someone please tell me how there symptoms started and came about. How long it took? What happened? My eyes arent bulging yet, but Im filled with dread that Iwill wake up tom. looking like a frog! The scariest thing is not knowing what to expect!! Someone, PLEASE HELP!!! I feel like Im going to have a nervous breakdown nad I just wnat to hide away from the world!!
Being first diagnosed is often frightening, there is so much to take in and so many different stories. We aren’t feeling capable of dealing with the day to day let alone the pressures of being ill. Believe that you are not alone. Everyone on this board has been there. Stick with us, you are in good company and the moderators of this board do everything in their power to give you only medically viable information.
That said, breathe. Just breathe. You have been diagnosed, now you can start to get well and though that may be a long road, it is good news!
I was very sick by the time I was diagnosed. Many of the things you described is what I went through a couple years ago. I’ve always had squinty eyes and then I didn’t. They itched, burned, watered and ached. I used eye drops during the day with some relief and at night I used an eye gel and a sleep mask. These didn’t alleviate the problem but they helped. About this time I met a woman in Wendy’s who had the full blown Thyroid Eye Disease and like you, I started freaking out. She was a wonderfully nice woman but I did not want my eyes looking like that. Pretty soon they were swelling, I had big puffy bags under my eyes and sometimes even red welty looking bumps on my lids. I had Radioactive Iodine (RAI) to destroy my thyroid and am working on evening out my levels with replacement hormone. My eyes are nowhere near the problem they used to be. Like most of the other hyper symptoms, my eyes have improved.
The percentage of people who develop TED is relatively small. See your opthamologist regularly so he/she can chart any changes and try not to worry about it. Do what you can, don’t stress about what you can’t.
Welcome to the club no one should have to be a part of but Thank God There’s A Club!
I know it is hard to believe but things DO get better. I still have days where I wonder if this is ever going to end but all I have to do is think back to how I felt two or three years ago and I realize how far I’ve come. Learn everything you can about Grave’s, be proactive in your treatment, be patient and be kind to yourself.
Carys
Received a call from PCP’s office, and the nurse said my scan report showed “Highly suggestive” for Graves Disease! I thought the scan was the confirmation?? She gave me no numbers (not sure if there are any)
and said it would up to my endo to tell me where I go next. Meanwhile my symptoms continue: sweats, shakes (in hands and legs) weak muscles in arms and legs, extreme fatigue and sleepiness, sore and baggy eyes, heart palpitations (though better now with medicine), itchy skin, headaches, etc. etc. etc…..My appt. is 8/2 and I am anxious for it….is it possible I don’t have Graves? If not, what is all of this……There was trouble with the machine when I had my scan, and I had to sit for the tests instead of lie down…could that have messed it up?
Is this inconclusiveness normal????
Hi mary3l5,
I think the likelihood is that the nurse is simply not authorized to give you a conclusive answer. They have to leave that to the doctor. In any event, your appointment is pretty soon (a week, ten days?), so you’ll know soon enough for a certainty. The scan numbers don’t necessarily help you to see “how” sick you are (they’re pretty simple — in or out of normal range, that’s all that really matters), so it wouldn’t make much of a difference even if the nurse did share those with you.
Hang in there until your appointment — I know it’s tough. Hyperthyroidism was the worst feeling I’ve ever had. I never knew what it was like to feel like I wanted to jump out of my skin — never knew what a blessing that was, either.
Try to keep yourself as calm as you possibly can. It’s easier said than done, but make every effort. Being anxious doesn’t help ANYTHING, and it can make your symptoms worse, so try to be reassured just by knowing that you are in the hands of your medical professionals. Use this time to do research on Graves’ so that you can perhaps make some concrete decisions if, in fact, the doctor gives you that news.
Let us know how it turns out.
~Ski
NGDF Assistant Online FacilitatorSki is absolutely right.
I want to simply add some technical details, watered down a bit.
Whether you are hyperthyroid or not is determined by a BLOOD test, not the uptake and scan. If you are showing hyperthyroid on your bloodwork, then you should be researching theoretical treatment options (your doctor may eliminate one or more of them, but at least you will understand better what he/she is talking about).
The uptake test shows how much iodine made it into your thyroid in a certain period of time. It does not show how sick you are — it simply records the activity of your thyroid gland. Some folks are hyperthyroid but have a normal uptake. A result like this would limit their potential treatment options.
The scan portion shows where the radioactive iodine went inside your thyroid. Since your doctor’s nurse said that the scan was “highly suggestive” of Graves, it sounds to me like the iodine might have been pretty much everywhere in your thyroid. The technical word for this is “diffuse.” And another term for Graves in medical-speak is sometimes “diffuse toxic” goiter. All it really means if the term diffuse is used is that all of your thyroid cells took up the iodine, not just discrete clumps of cells here and there.
I hope this helps, and I hope you are feeling better soon.
Bobbi — NGDF Online FacilitatorThank you both for your responses……and the information….I must admit that I do get anxious easily these days….more from the wait and lack of definitive information than from the idea of the disease itself…although that is also a bit unnerving. I just want to get on with it…whatever “it” is. If I need treatment, which is undoubtedly so, I want to start as soon as possible.
It doesn’t seem right that I get more information and encouragement here than I do from my own primary physician. Maybe that is how it is these days…doctors have no real time for patients..
Thank you both again….I will take your collective advise and try to stay calm and do my research so I am ready for next week….thanks again…..
Mary,
When I had my uptake test done I just waited right in the same room a few minutes until the printed sheet came out to show the results. The Dr. came in and said I did have GD and told me my options. I chose RAI and was back the following day to take the pill. No biggie. Maybe it was different for you or the machine, as the machine that did my uptake only took a few mintues to give me the results. Hang in there, you will get better. I use to write notes when I saw the Dr. because I’d forget as soon as I got there.
Or yes, and I had the blood test first before uptake to determine it was GD.HI all,
I am 33 years old and recently diagnosed with Graves. I am very confused. After reading alot ot the posts on here I see that some people opt to just take the medicine, which would be my choice, but the doctor wants me to only take it for 3 months or so and then see the Endo and then get the RAI treatment. He said that no one should take the med more than a year, but failed to tell me why. He also did not give me any other choices, and I am very worried about the RAI and staying away from my family. Where am I supposed to go? Why don’t they just put you in the hospital if you cannot be around people? Do I need to clean the furniture that I sit on too? I know I rambling on but this is just so very overwhelming and I fell as though I get good info here and then it conflicts with what the doctor says and then on top of that I have people telling me to go the natural way. I have one more question, has anyone noticed more acne? I feel like I am a teenager again is this from Grave or could it be from the medicine? Thanks for listening all
There are lots of books out there that you can read about GD and having RAI and your find the names on this site. After I had RAI I went back to work and then home with my kids. You can be around people you just aren’t supposed to hold a small baby near your neck, is what I was told. And double flush the toilet for a few days that’s it. There is nothing at all to RAI, just swallow a pill and wait for your thyroid to die. Which it needs to die so you will get well. Everyone is different on when the thyroid dies off and go hypo, but normally it’s 4-6 weeks. Then you start taking synthroid, it’s really that easy. I know it all sounds pretty darn scary but read as much as you can so you understand more what is going on with your body. Knowledge is power.
Thanks so much that does sound easy. My doctor was the one who said i needed to stay away from the family for a couple days. I think I will read some of those books and educate myself more and then just wait and see what the endo says in january. Thanks so much for the peace of mind.
I was on PTU for three years when I decided to have the surgery. I made the decision on what I felt would be best for me and my family. During the 3 year time period the doctor continued to do bloodwork to make sure that the PTU was affecting anything it shouldnt. Good luck with your decision.
KatieWell, obviously your doctor is opposed to the antithyroid drugs. We have had doctors similarly inclined occasionally speak at our conferences, and typically the reason is that their experience has been with some of the adverse drug consequences associated with these medications. The major issue is often a condition in which the white cells are depleted as a result of the drug’s action on the bone marrow. This makes it difficult, or impossible, for the person’s immune system to fight off infection and it is very dangerous. It is also rare. But if a doctor has experienced having a patient with this condition, he/she is likely to be much more cautious when prescribing the drugs.
There are many doctors more willing to try the drugs for a longer period of time. So, if this is your inclination, you could try to find another endo. I would caution you only to be realistic about this line of treatment: Graves is “forever.” “Remission” does not mean “Cure.” It means a temporary cessation of symptoms. It can go on for years for some lucky individuals. But the drugs do not bring about remission, they simply allow us to wait and see if a remission occurs. (Antibody levels rise and fall for no well-understood reason.)
As for the issues surrounding other folks after we have had RAI. They are designed to try to avoid someone receiving an unnecessary exposure to radiation. RAI–in the quantities we receive it — has not been shown(in over 50 years) to hurt our long-term health, so it is not going to adversely affect the health of those around us, either. The issue is very much like the one that causes the dental xray tech to leave the room before turning on the xray. It isn’t that the dose of radiation is bad for them. But radiation’s effects are cumulative, and they do not “need” that dose of radiation added to their lifetime exposure.
Different doctors give different recommendations for what precautions to take. It depends upon the cuation of the individual doctor and also probably the dose of RAI we get. So, if you decide to go ahead with your doctor’s recommendation and do RAI, you should simply take notes on what your doctor recommends, and follow them the best you can.
Wishing you good luck with your decisions. Oh, yes. And probably you do feel a bit like you did at puberty: the hormones are “out-of-whack” now just like they were back then. Hormones are pretty powerful, and they do affect all aspects of our life.
We do get well, though. Keep that thought.
Bobbi — NGDF Online Facilitator -
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