Graves disease is a serious disease. When patients are diagnosed in my offices in Denver, Vail or Littleton there are a slew of emotions that go through their mind. The first thought is "How do I cure or fix this immediately". There is not a quick fix for Graves and any patient I have had can tell you that. We can get you where you need to be eventually but it is a process. Here are five things if you have Graves I recommend you do not do.
Taking oral steroids
The EUGOGO graves ophthalmopathy study showed extensively that oral steroids do not provide any long term benefit for patients with Graves. Their use is strictly limited to patients who have optic neuropathy and need a decompression. Oral steroids will not improve permanently bulging, double vision, tearing, redness of the eyes in Graves. There will be temporary improvement in Graves disease for patients with oral steroids but once the steroid is stopped, the symptoms will return.
If you are smoking and have Graves disease you are making a huge mistake. There is large evidence that smoking may tip off Graves in patients. It is proven the course of the disease is longer and much worse in smokers. Additionally the risk of blindness from Graves disease is increased in smokers. If you are a smoker, you need to quit to save your vision. Period.
Getting cosmetic eyelid surgery at the same time as a decompression
The order of surgery for Graves is eye socket surgery, then eye alignment surgery (for double vision) and finally eyelid surgery. There are patients in Denver who have been recommended cosmetic surgery at the same time as a decompression. That is strictly contraindicated. Eyelid surgery is reserved after a decompression and should not be done concurrently. The order of the surgery has been tested through studies with what has the best results for Graves patients. Though one wants to “fix the bags” as soon as possible, it is not in your best interest to have that done at the same time. I would say that if a surgeon recommended that to you, I would run away as soon as possible.
Not waiting for your eyes to stabilize before getting surgery
The course of Graves disease in patients in Denver, Colorado and all over the world tends to be one year in nonsmokers and 3 years in smokers. This has been studies extensively. During that time period things can get worse but stabilize over time. A mistake is to get surgery if things are not stable. An exception would be eye socket decompression for pending vision loss. For that, all bets are off.
Feelng that there is no hope
There is hope for Graves disease patients. The vast majority of Graves disease patients do not go blind and get surgically corrected so they can go back to normal lives. It is a process and we don’t have instant fixes at this stage in medicine for Graves disease. Medicine is researching actively more instant and preventative cures but at this stage we do not have any “magic wand” treatments. There are things we have to control the disease and get you where you need to be eventually. Most Graves disease patients end up living normal lives though the process can be frustrating, challenging and depressing at times. I believe that therapy can be helpful along with having a support group to help you go through the process.
As a Graves eye disease specialist in Denver, this is a disease I specialize in. With your eye doctor, endocrinologist and primary care doctor we can work together to get you where you need to be. The key is to get a team of doctors to monitor you and a great support group to help you through it.