[stepheystables]

#1059671

Thanks, took Drs 3 yrs to find out in 1985 that I was Hyper, my Dad was hyper, and my Mom was Hypo. I was given a radiation pill test, and given the option of radiation killing it, or surgery. After the effects of the “test” I took surgery as I had already had numerous major surgeries, (c-sections ect). I had always felt really well on 1.75 meds, and every Dr always tried to drop it, and until a year ago, I lost the fight, and am down to 1.25. Just before Thanksgiving my eye swelled, I went to my eye Dr and he give me antibotics, and when swelling was down said he would send me to Spec, he didnt know exactly what was wrong. Go to eye specialist he gives me a list a mile long that it might be, and orders MRI, it shows something, he sends me to another Specialist, which is very good, he says its Thyroid eye disease, puts me on predozone( sp) for a short period of time, and orders a different thyroid test it comes back with odd antibodies, and I was treated for a month with more predozone, just went back Saturday, it didnt work, and he says Graves, and wants me to have it treated with Radiation. Im sorry this is so long, but wanted some other input on if it works anything that might give me more information before seeing the Radiation Dr, and questions to ask

[Kimberly]

#1176663

Hello and welcome! It sounds like you are asking about radiotherapy for your eyes, correct? I’ve heard mixed reviews from patients on this treatment option, but here are a couple of resources.

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

International Thyroid Eye Disease Society Info:
http://thyroideyedisease.org/radiotherapy/

Video on “Do Steroids & Radiation work in Graves’ Eye Disease?” from Dr. César A. Briceño
http://www.youtube.com/watch?v=jy5y6gb2AHk

If it’s been a while since you have had your thyroid levels checked on that new dose of meds, that might be helpful as well, as some doctors note that eye issues can occur when patients are swinging between hyper and hypo.

We had one presenter note at a past conference that radiotherapy might not be effective in patients who do not respond to Prednisone, but this would be worth discussing with your own doc before you make a final decision.

Take care – and please check back to let us know how you are doing!

[stepheystables]

#1176664

Didnt think to add about levels, I made it such a long post, last Spec, when he had the different thyroid test done said levels were good, didnt ask; and that the other test is what showed the antibodies. And yes not familar with the term yet, will look at the ones you put. Thank you very much
Wendy

[stepheystables]

#1176665

thanks for these 2, lots to look and listen, the more I read the less I like radiation, but have always felt that way anyhow..It says that they do “Both orbits” I wonder why, for me its only the one eye that is effected? And its giving me the information to know what kind of questions to ask they are to get me a appointment to talk to the radiation dr maybe this week. I appreciate your help, and yes will keep you updated
Wendy

[stepheystables]

#1176666

Have been reading here, and other places, the other symptons that other people have problems with were just not for me,( I have always been a hyper type person, and since the change of meds down to this low level feel like a couch potato, I just never felt like a lot of people do) this is really aggravatting, double vision, and the swelling; weird I think that most have problems right away, or up to what 6-8 years; I went almost 30? And yes I am a smoker; for all of my adult life (I’m 59), and I am a pain, to them as I like to smoke and had no plans of quiting, but over the past couple years had cut down on my own; and everything I read says it aggravates Graves, what about the foods and supplements? How does everyone feel or use of them?
Once again thanks for the input and will continue to read
Wendy

[Kimberly]

#1176667

Hi Wendy – There was a small study in Italy that showed that selenium supplements (100 micrograms twice a day) might have a positive impact on mild TED. However, the study was done in an area known to be selenium-deficient, so more research will be needed to determine whether this might be helpful to other patients. (On a side note, taking larger than recommended doses of any supplement is *not* a good idea. Certain vitamins/minerals that offer a benefit at smaller doses can be dangerous if taken in too large of a dose.)

Also, many patients notice a correlation between swelling and high sodium meals. So if you eat out a lot, that might be something to pay attention to.

A key issue with smoking is that not only do smokers have a higher risk for TED complications, they do not respond as well as non-smokers to treatment options such as steroids and radiotherapy. I’m a fellow patient, not a doc, but it’s certainly possible that the smoking had a negative impact on the effectiveness of your Prednisone therapy.

Finally, it’s really helpful to get hard copies of your lab work. The “normal” range is fairly wide, and some patients feel their best at a certain spot in the range. If you find that your labs are at the extreme edges of “normal”, it’s good to discuss this with your doctor, especially if you are having symptoms.

Take care!

[stepheystables]

#1176668

thanks, and it is great having someone even on the internet to visit with having the same thing, or same type of thing
And I figured as much from what all I have read

[jaqeinquotation]

#1176669

Welcome, welcome, welcome. This is not my site but its my favourite because its offers so much support and valuable information. I can’t remember if you said you had GD, though you mentioned that you had a TT(I’m still learning so forgive me if that makes no sense)

Your posts just confirms how this disease attacks; when it wants, how it wants. Frustrating to say the least. I’m glad you shared your story and I’m praying that you get some relief too. I too have the eye issues (both eyes) that started about a year (I think) after I was diagnosed. I recently chose to have the surgery and I really hope to see some changes in my eyes within the coming weeks. The surgeon (who was amazing btw) seemed to be convinced that the surgery would help. So I continue to pray about it.

Kimberly, I never heard about the selenium supplements…wonder if they’re available in Canada? I do watch what I eat much more now than ever, especially foods with sodium. But I love food so that’s a challenge in itself. But it’s all about discipline I think.

[snelsen]

#1176670

To Wendy.
I suggest that you go to a neuro-ophthalmologist, get a good diagnosis for your eyes. If you call, be sure to take your other records, a copy or report of the MRI and your labs. You HAVE TIME to know what you have, to understand it, and to make a right decision that is the right one for you (with your TED, or thyroid eye disease.) It does sound like you have a firm diagnosis.

As Kimberly says, radiation for TED is pretty controversial, with most eye docs choosing not to include that in treating TED. My neuro/eye doc was very much against it. IT seems like no doc has taken the time to explain the entire course of TED to you. There are GREAT references on this site for it, but VERY BRIEFLY, there is an active phase, where basically no real treatment can be done, except to do things to treat the SYMPTOMS. Like sunglasses, eyedrops, a patch on an eye if double vision is too bad. THe active, or “hot” phase can last from about a year to 18 months or so. It is active, cause you eyes are continuing to change from one day/week to the next. After a while, they stop changing, and you are ready for the surgical procedures, if you need them, for your eyes. Totally depends on how much your life and vision are being affected. So the big worry about TED is losing vision, which happens to very very few people. There is mild, moderate and severe Graves. I had severe, most people do not.

Re smoking, what Kimberly says is right on. Smoking hurts TED, makes the symptoms worse sometimes. That is in all the literature. Good for you for cutting down. And you should ask about radiation and smoking, I am just a patient, but I think there are some real concerns in that area.

For what it is worth, I had no interest in having radiation for my eyes. And no docs in my area do it. I sure wish you good luck in your search. Remember, do not let yourself get pressured to do something you do not clearly understand, including understanding your TEd.

To jaqueinquotation-be sure to note that Kimberly mentioned that this study was:
1.SMALL-a very tiny study.
2. DONE IN AN AREA THAT WAS SELENIUM DEFICIENT
3. IT HAS NOT BEEN DONE WITH CONCLUSIVE INFORMATION IN AREAS THAT ARE NOT SELENIUM DEFICIENT.
4. It was for MILD TED only.

IF DO DECIDE TO TAKE SELENIUM, YOU CAN REALLY HURT YOURSELF, AS KIMBERLY SAID, if anyone thinks more is better. It is not.
Glad you love your surgeon, and I am sure you will love your eyes afterward!
Shirley

[jaqeinquotation]

#1176671

My TED is more severe so I think it would be in my best interest to get a referral to a neuro-ophthalmologist. It really seems to be a good idea especially when my current ophthalmologist told me that any surgery I do on my eyes would be cosmetic??!!? Umm I wasn’t born with eyes like this so I’m not sure what he meant and I tried not to take it personal.
Now to search for a reputable neuro-ophthalmologist in my area and hope that he/she is not booked solid.

Wish me Luck!

[Kimberly]

#1176672

@jaqeinquotation – Yes, definitely be persistent until you can find a doc who will treat your TED as a *medical* issue and not a *cosmetic* one. I’m not as familiar with the system in Canada, but in the U.S., this makes a HUGE difference for insurance purposes.

I attended a presentation at UM Kellogg last summer, and one of the presenters made an interesting comment on this. If someone was in a terrible car accident, no one would question that surgery was necessary to restore their appearance as close as possible to where it was before. Why do the insurance companies even question this with TED?

As for the Selenium supplements, I order them via my doctor’s office. This is a good piece from the National Institutes of Health that talks about sources of Selenium, as well as the toxic effects that can come from having excessive levels, which can include stomach upset, hair loss, fatigue, and mild nerve damage.

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

http://ods.od.nih.gov/factsheets/Selenium-HealthProfessional/

Take care!

[stepheystables]

#1176673

Sorry have a had a busy week, and reading and researching, going today for
consultation appt for radiation,,,,and thats what I think it will be, I abhor the thought of any radiation and cant find enough proof that it works
We in this area of Ohio are selienum defecint (sp) and know this for my
horses, but wanted to check in and update on what is going on
I also have been reading maybe too much, on antioxidant pill treatments
so many different things, and yea have caught hell forever on my smoking
I am one of the few that enjoys it I guess
Everyone have a nice day and will get back on when I can

[stepheystables]

#1176674

thanks, consult appt went ok, this is the place I took my Dad for over 3 years for
different cancer treatments radiation and chemo. So there is Nothing to speak of in their information other than Dr (which was nice) about the treatment.
Spooks the he– out of me, even my husband which commented when we were alone, they treat lots of people here for this, I said no, the older lady we seen was breast cancer, and the older man prostrate,,he just looked at me he said you didnt talk to them to know, and I said but I listened to how long or other little things when you go to a place as long as my dad you pick a lot up, he thought they were there for something else or like me
Will speak to my one spec that ordered this, have a appt with reg dr next week, and did not agree to have treatment, and have another appt to speak with them again towards end of month, cancer people called me today( another freaky moment) and before she got started I said I would answer any questions she had, but mine wasnt cancer it was Graves ,,,,and she had no clue.
will update again when I talk to some of drs
Oh and it wouldnt even be a cosmetic thing for me could care less

[Kimberly]

#1176675

Thanks for the update! Eye surgeries can help both with appearance and function. However, the issue with having eye surgeries coded as “cosmetic” is that this can cause the insurance company to refuse payment.

So you definitely want to talk to your surgeon ahead of time about how the procedure will be billed/coded.

Take care!

[Author]

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