The most common complaints that Graves patients have about their doctors that I have seen from patients who come for a second opinion are:
The doctor didn’t even do anythings
I don’t look normal after my orbital decompression
My doctor was completely unaware about Quercetin for Graves
What my doctor says totally contradicts what the people said on facebook
Graves disease is a frustrating disease for patients. It can affect your vision, sense of well being and eyes. There is often frustration and anger that goes through patient’s minds along with many questions:
Why did I get this?
Why did this happen to me?
How can I fix this as fast as possible?
As a physician it can be very frustrating treating Graves eye disease. To be honest, there are many eye socket, eyelid and tear duct diseases that are easier to treat. If someone has eyelid cancer I remove it. A blocked tear duct is opened. A drooping eyelid is lifted. Yes, there are difficulties with any disease and challenges treating them but few diseases offer the challenges that Graves disease offers for oculoplastic surgeons. Here are the common frustrations that patients have and how I feel as a surgeon about the same issue. It gives an insight into how we as physicians feel about the different frustrations with Graves disease.
The doctor didn’t even do anything at my appointment. It was a waste of time.
Many times a patient is diagnosed with Graves disease and has a myriad of symptoms such as tearing, eye irritation or double vision. They go to the the oculoplastic surgeon or ophthalmologist office and are told they have to wait things out and leave pretty upset. With patient’s with double vision or irritation of the eye, this is extremely troubling.
Here is what is going on. It is not that your doctor is clueless about Graves. It is not that they are afraid to treat you. Graves disease has a pattern of inflammation and progression of symptoms after which things stabilize. Only once things are stable can things like bulging of the eyes, double vision or eyelid problems be fixed. Only once they are stable. If you performed surgery too early, the patient would most likely need a second surgery as symptoms progress. This time however, you are operating on a patient who has had scarring from previous surgery with less predictable results and thus poorer outcomes. As a result, from a surgical perspective most surgeons will not operate on a patient unless they are stable for six months at a minimum.
What about medications or radiation? First off oral steroids really are not the best for Graves. Often there is immediate recurrence when it is stopped. IV steroids are better but best suited for people who are actively progressing. The ony way to see if someone is progressing is to have two examinations (two points in time) to judge what is going on. So on the first visit to a doctors office unless there is impending vision loss (from damage to the optic nerve) it is extremely unlikely any procedure, IV medicine or radiation is going to be prescribed. In fact, it is probably unwise to do so. Exposing a patient to IV steroids or radiation who doesn’t need it only exposes them to the risks of IV steroids (death) and radiation (blindness) for no good reason. Patience is really needed during the acute phase from the patient and the doctor for care to go well.
During the acute phase (1 year for non smokers and 3 years for smokers) there is not much a doctor can do other than 1. make sure the thyroid levels are optimized 2. Check to make sure things are not progressing too fast 3. Make sure the optic nerve is not getting damaged 4. Treat the patients symptoms as best they can. The fourth option of treating symptoms (usually with drops and ointment) is extremely frustrating to the patient. Doing anything else in that situation however is contraindicated.
My doctor was completely unaware about Quercetin for Graves
Back in the day (in the little house on the prairie days) there was a guy who peddled “magical elixirs” from town to town. It was nothing more than whiskey with sugar but was claimed to cure everything from arthritis to cancer. So in the 1900s a decision was made that claims about any medications effectiveness couldn’t be made without testing. In fact at the same time herbal medicines had to go through the same testing to “prove” what the claims were. In the 1970s herbal medicine companies got around these new rules by claiming they were prescribing “food” not “medicine” so they could make any claim and not be subject to FDA regulations. The medical community has embraced herbal medicines but only if it is tested to work. Herbal medications are not without side effects (Vitamin A can cause Lung Cancer, St Johns Wort can cause kidney failure). We want to make sure they help before blindly recommending them for Graves disease. The only herbal medicine that has been proven for Graves eye disease is selenium. Its not that the other stuff doesn’t work. It just hasn’t been properly tested. So as a result doctors are not going to recommend stuff that is unproven without good data. You wouldn’t want to get a cancer medicine that is totally ineffective because it wasn’t tested. The same should go for herbal medicine. Contrary to popular belief herbal medicines have just as large a side effect profile as regular medications. It isn’t smart to take unproven stuff.
I don’t look normal after my orbital decompression, the surgery was botched.
After orbital decompression, there are two other surgeries that you may need. First, you may need double vision surgery. Second, eyelid surgery. In fact it is contraindicated to get any other order of surgery. After an orbital decompression, your eyelids may not be in the correct position and it is a process to get you looking back to normal. First you will need the double vision surgery and then the eyelid surgery. This is the process that has been tested over and over. Rushing through it and performing double vision surgery first or doing a cosmetic eyelid surgery with your decompression is not only ill advised but wrong. You will not look normal after decompression and may need the other two surgeries to look back to normal. You also may need cosmetic surgery (to remove fat and skin) to appear back to normal.
What my doctor says totally contradicts what the people said on facebook
Your doctor goes by studied data and research. What people say on facebook is great for moral support but I would consider someone a fool to go after the experience of one, two or even ten people on facebook. To illustrate this lets use a simple example: If the cure rate for lymphoma is 96% through radiation. You go on facebook and ask “Hey I am about to get radiation. What do you guys think about it?” Then a bunch of the 4% who failed radiation go on there and tell you it didn’t work for them so you don’t do it. Basically, you are making a huge mistake. You would basically be going after the anecdotal evidence of a few people. Another example would be seatbelts. You could go online and find people who had friends who got in car accidents and died despite wearing a seat belt. You would be a fool to not wear your seat belt. Use caution when getting advice from facebook patients. Emotional support is great. Showing you articles on data is great. Using their single person experience to direct your own care is foolish and dangerous.
In summary Graves disease is a challenge. I hope these statements that I often hear have a good explanation from the medical side. In fact, huge mistakes are made when doctors don’t do what is medically correct and give in to the desire from themselves and the patient “to make everything back to normal quickly”. I hope there are some patients who are feeling these things and their fears are allayed by reading this article. I hope this gives a better explanation of Graves disease frustating steps for patients and gives them confidence that there is a light at the end of the tunnel.