[Ski]

#1073890

You are right to stop & think before blindly going into any treatment. I want to say, however, that RAI is NOT the "evil monster" that some websites would like to claim. We have MANY people here who were given RAI as the first choice of their endocrinologist, and they’re doing just fine. We also have many people here who chose RAI as their treatment, and they’re doing just fine as well.

Still, we do have three perfectly valid options for treatment, and we should be free to choose whichever we are more comfortable with, barring any obvious deterrent (for instance, no surgery for hemophiliacs ~ the most obvious example I can think of).

RAI, in one study, caused "temporary worsening" of TED symptoms in about 15% of the patients in the study. Neither term was well defined, and the study has never been reproduced successfully, so take that for what it’s worth. In that study, patients who were given a concurrent course of oral steroids (prednisone) for a short period of time before & after the RAI (a total period of a few weeks) had 0% "temporary worsening," so in patients with TED who want RAI, it is recommended that they discuss the option of using steroids to minimize or eliminate the possibility of exacerbating eye symptoms. Steroids, even in a brief course of treatment like this, do have the potential to cause severe side effects, so it’s something that needs to be evaluated between you, your endocrinologist, and your ophthalmologist.

As our founder, Nancy Patterson, has pointed out ~ radiation professionals will typically recommend using radiation. Surgeons will typically recommend using surgery. It’s something we need to sort out, as patients.

If it’s your preference, you should be fine taking ATDs, at least to start, in order to bring your levels down and get some perspective on everything. If your doctor has some objection to the use of ATDs, have a long discussion with your doctor to find out why. Some doctors just don’t like to use ATDs, period. If your doctor has a specific reason why ATDs would not be recommended FOR YOU, that’s something to consider.

By the way, this message was posted twice, so I deleted one of them. Hopefully it didn’t startle you to think that your post had been deleted. ” title=”Wink” /> It’s still here!! ” title=”Very Happy” />

[pizzicatto]

#1019760

I was diagnosed with Graves Eyes Opthalmopathy last month. I had heaves of blood tests done and one more set (thyroid function) is coming in two weeks time. I had the radioactive iodine uptake test done three weeks ago. The nuclear medicine doctor thinks I should be given the radioactive treatment . I was just quiet when he spoke to me about this. I was not sold by his choice .

Coming home, I researched online and was rattled to discover on how risky this treatment could be.

I have only seen my endocrinologist once since it was just my first meeting with him when I was diagnosed last month. My general physician made the arrangements. As of this writing, he has not prescribed yet any treatment for me as I am still due to have several blood tests.

My question is: Has any one of you here have gone through the radioactive iodine treatment as a first choice of your endocrinologist?

Yesterday, I met for the first time my opthalmologist (all my doctors are new to me since I have just relocated into the city recently) yesterday and he advised that I should not submit myself into this radioactive iotdine treatment as a first choice. He added that I must go first for the anti-thryoid drugs since the complication is wide with the RAI treatment. He mentioned that in some cases, the eye condition could get worse when RAI treatment is administered. Please enlighten me. And thanks a bunch.

-PIZZICATTO

[pizzicatto]

#1073891

Thanks, SKI. Your response is quite informative. Also, I don’t mind if you deleted the double entry here of the same thing. Actually, I was trying to delete one but didn’t know how and I was jsut glad you did it. Thanks!

I met my ophthalmologist for the first time last week. I was excited to know what he was going to tell me. To my disappointment, he was an impatient and insensitive man who had no empathy at all to sick people like me. I came there at his clinic to find answers to my problem and all I got is this repulsive attitude of a Harvard trained doctor.

I was sad and felt so alone. In his mono-syllabic way, he said that my Graves Eye disease is just in its earlier stage; that I don’t need medication for the mean time, except to use eye drops to lubricate my eyes.

Fine. I took a deep breath. I just felt no empathy from him.

It was kind of offensive to be treated coldly by a doctor who I just met last week. He measured my cornea. Left eye is 70 and right eye is 80.

“You have mild protrusion on your right eye but you are still within the norm.” Then, I asked what is the norm? He didn’t answer.

Soon enough, I said that I was going to show him a one-page photo print out of my eye photos. He at once dismissed me and said that he more or less knows how they look like. When he responded to me in such a hurried and insensitive state, I felt so hurt and slighted. I wondered how he’d feel if he were in my shoes and had the Graves’ Eye disease.

I thought of shifting to another ophthalmologist right there and then. My husband recently got laid off so the two of us have lost our health insurance. In effect as soon as it happened, we applied for a new health insurance policy as private enrollees and pay up a monthly fee that is affordable to us. As such, our co-pay for each visit to a doctor is a hundred bucks. With what I experienced with my eye doctor last week, I just felt robbed!

Is there anyone of you who had the same experience as I just had?

Thanks for listening.

[Lorrainydaz]

#1073892

Hi Pizzicatto, sorry you are having such a tough time but I understand how you feel. It took the doctors (several) to figure out I had Graves Disease. When my eye first bulged I made an emergency appointment with my opthamologist (who I have gone to for years) and he thought I was there because my eyelids were crusty, due to sinus infection (if he had really looked he could have seen my left eye was bulging out!). Due to miscommunications we had, I didn’t realize that was his thought until I had been to my regular doctor who prescribed antibiotics for my sinus infection, my ENT doctor who sent me for a CT scan and 2 months later back to my the original opthamologist who asked me if I was still using the eyelid gel he gave me. At this point, I asked him, "so you are saying that my crusty eyelids are making my eye bulge?" He looked at me like I was nuts (mind you I have been going to him for years for my glasses) and asked to see my drivers license so he could compare my eyes!! I was not happy. He sent me for an MRI, tried me on steriods (which made my heart pound so bad at night I thought I would die) and then did the best thing ever by sending me to an expert eye plastic surgeon – this guy was fantastic and thought it was Graves but he also told me to go to an expert at a hospital to get a second opinion – I did this and I had to pay $500 out of pocket since my health insurance didn’t cover it but it was well worth it. All the while this was happening my thyroid levels were perfect, if the eye plastic surgeon hadn’t suggested the antibodies test, they probably would still be sending me to doctors. My point to this whole little story is don’t be afraid to go to another doctor, (I am in the process of switching my endrocrinologist as he does not give me enough information or make me feel real confident in him). It’s a pain with the co-pay but it’ll be worth it. I find that monthly I’m spending over $250 for doctors and this year alone I paid so much I’ll be able to deduct some on my taxes! I am currently scheduled to see the surgeon to schedule an appointment to remove my thyroid. I’m on PTU and just want this to be done. Find a doctor you like and makes you feel confident, as you’ll have to work with this person for a very lonnnnnnng time. I know it’s tough to spend the money searching for a good doctor, as it seems like such a waste to hear the same thing again, but it’ll be worth it if you can find a Doctor who cares about you and understands what you are going through, besides you are worth it! Good luck and hang in there!

[pizzicatto]

#1073893

Dear Lorrainydaz,

Thanks for your encouraging words! Yes, am in the midst of finding a different opthalmologist. On the other hand, my endocrinologist is a good doctor, one who is not on-a-rush to explain my medical issues. I am due for thyroid function blood test this Sunday in preparation for my visit to my endo next Wednesday. Right now, I have no idea on what’s going to be the verdict in terms of my medical treatment for GD. But this early, I am know I am not for RAI but would consider the ATD first and see what happens. I got some warnings from other people who said that RAI does not work well with people who have TED like me. I hope that my Graves’ Eye Disease gets treated-the same time as my hyperthyroidism. For some I know, the eye disease is an illness on its own.

Presently, my hair has become so dry. It has split ends and hard to manage. In the morning, it is tough to brush it. I have freezy hair. The other day, my husband helped me in doing so. But so far my symptoms apart from this, my symptoms are mild regarding my hyperthyroidism (except perhaps for my bowel movement that has become more frequent each day).

I work out 6 days a week on a one and a half hours each session. I have been a health buff for two years now and I feel good. It’s just sad that I got this GD. But I will beat it!

P.S. The only time I experienced an uneven heartbeat was thrice since December 2008. Otherwise, am ok. I eat healthy and even bake our daily bread (100% whole wheat) for two years now! Thanks and cheers!

[Ski]

#1073894

Graves’ thyroid disease and Thyroid Eye Disease are always separate ~ treatment for one does nothing to help or hurt the other (except for that possibility of "temporary worsening" of symptoms for a few months following RAI that I mentioned in my earlier post). Graves’ and TED do tend to happen together, but that relationship is yet another mystery that doctors are trying to unravel. They are absolutely separate diseases, but, as we learned at our conference, part of what is now being termed the "Graves’ Syndrome," which includes the thyroid disease, TED, and pretibial myxedema (nasty, itchy, orange-rind rash on the shins).

By the way, TED also occurs in people with Hashimoto’s Disease (a hyPOthyroid autoimmune condition) and in people with other thyroid conditions.

[Sjefferys]

#1073895

I had radioactive treatment 2003, my eyes start protruding 2004 experienced dark circles, tired looking. 2005 the bulging and eye dryness, headaches started. My Enc. Dr Berlin referred me to Dr Hudak trained ophthalmologist for Graves patients. She worked with Dr. Berlin to ensure TSH levels maintain 6months normal. I was approved for Eye Surgery. My sockets were reset, the fat upper and lower removed. It’s been 6 months and I no longer have the eye stress symptoms 2005-2006. I feel so much more confident looking ppl in their eyes again. I fought with my insurance company and the last hour approved to pay half cost for this procedure

[Ski]

#1073896

I’m so sorry you had to fight for coverage from your insurance ~ their first response to everyone is "NO," to save their bottom line, but this is absolutely a necessity for patients who need it. Unfortunately, by their terms it can look like it’s cosmetic, when it is clearly not. You shouldn’t have even been stuck with half of it, but I can understand being grateful for a "yes," even if it’s only partial payment. The doctor should have the final say, insurance companies just infuriate me.

[Author]

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