[newmane]

#1060668

as another new poster mentioned, I see lots of views and posts but not so many resonses from long time Grave’s patients to get an idea of what to expect or guidance on making decisions . My next move will be to seek out those of you who have the most experience with this and what most people do (RAI) . if so, how common is eye protruding / vision problems and is there any way to predict the outcome , on the eyes as well as the heart. I feel like I’m not getting anywhere but I’m going to do a lot of reading on here and get more educated about this.

[Kimberly]

#1183988

Hello and welcome! The “Treatment Options” thread in the announcements section of the forum has a couple of nice links that go through the pros and cons of each treatment option.

The latest medical guidance from the ATA and AACE regarding thyroid eye disease and RAI is based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

But unfortunately, there’s no way to completely predict the outcome. Patients who were treated with ATDs or surgery can still get thyroid eye disease. And patients with all of the risk factors might have RAI and still escape thyroid eye disease.

On the heart palpitations (which I believe you mentioned in another thread), most patients will see relief from that once levels are normal and stable, no matter which treatment option they have selected.

[Liz1967]

#1183989

I have had Graves with eye involvement for two and a half years. Began with rapid heartbeat and ankle edema. After Graves diagnosis, methimazole started and within two weeks eye symptoms began, beginning with dryness and rapidly progressing to protrusion, double vision and optic neuropathy. I was put on a twelve week course of IV steroid, in the middle of which I had a thyroidectomy followed by radiation on my orbits. RAI was never a consideration due to eye involvement. The eye symptoms stopped progressing within a few months and my TSH immediately became detectable and normal. My labs have remained normal since thyroid removal but there has been some minor adjusting of my synthroid levels. After the eye part burned out, reconstructive eye surgeries were begun this past spring and I have one more surgery to undergo. This is just my experience, but if I had it to do over again, I would have had the thyroidectomy immediately instead of waiting seven months and messing around between hypo and hyper on methimazole, which I felt did not help my eyes. At the first sign of diplopia, I would have gone for the orbital radiation instead of waiting nine months. I am not a physician and this is just my own experience with what helped me the most. I made my treatment decisions based on lots of research on PubMed, involving results of clinical trials and scientific studies, and consultations with physicians at major medical centers who see a lot of Graves patients. I tried diet changes and various supplements but found none helpful. At this point, I feel fine, my thyroid levels are always within normal limits and my eyes, while they will never be exactly the same, are not protruding, only slightly dry, not retracted or puffy, and double vision is correctable with prism until muscle surgery. My best advice to new Graves patients is to find the best, most experienced medical professionals you can and base your decisions on the most current, sound medical studies. What I learned in my journey may not apply to you, but this disease can move fast so don’t waste time finding expert help. Hope this helps. It does get better. I still don’t forget I have eye issues, but I no longer have to spend any time agonizing over my labs as they remain normal and I feel normal.

[Robboford]

#1183990

Hi newmane, I have been on my Graves’ journey for over 4 years now and have posted many times on this forum about my journey. I am in Australia and our medical treatments may be different to wherever you are. In your post you have stated that some of us long term Graves’ warriors have not offered any advice on your treatments etc. In my experience, we are our own strongest advocates and this Disease and it’s effects are so different for each of us that it is hard to give any one advice. Knowledge is your strongest friend, read and research and become informed on the choices that will produce the best outcome for YOU! Search my posts and you will read about my journey from initial hospitalisation to today where I am assessed as being in the worst percentage of TED (my left eye is bulging by 44mm (1 5/8″ in your speak)) and I am still waiting for my antibodies to lower to enable the upcoming eye operations (I have tried radiation almost 2 years ago with no success and I am not willing to endure steroid injections due to the complications that may arise), so I am stuck in no man’s land waiting for the antibodies to co-operate. I am lucky to have very understanding medical professionals who are happy to discuss any of my treatments or elaborate on any information that I have found and give me their input. Thankfully I am still allowed to drive during daylight hours and when it is not raining and I still manage to hold a full time job. (Although after 61 years in business, I have been employed in the same job for 29 years the company I work for is shutting down this week and ceasing to trade). So I am hoping that I will be able to maintain my “Suck it up buttercup” outlook having so much spare time on my hands. I like you, wish this was a “trendy or newsworthy” disease that got more publicity, awareness and funding for research and I will make it my life’s challenge in trying to promote awareness once I return to my “old” normal self. (Whenever that may be). The road ahead will be full of good and not so good days and it really is about trying to make it through to the best of your ability. After reading my posts on my journey if you have any questions, I will try and answer you as honestly as I can. Good luck on your journey.
Cheers
Deb
(A.K.A. Robboford)

[Author]

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