Graves Disease. Sounds very, very grave indeed.
And it can be. But there are good, solid treatments for it these days. Though none of them promise a cure and the truth is once you’ve chosen one of three treatments available you are destined to always need to take medication for the rest of your life and get regular blood work on a month to month basis. The symptoms of this disease are no fun. The treatments to help spur remission are also dangerous: Radiation to kill your thyroid, anti-thyroid meds to help slow your thyroid down or a thyroidectomy to remove the thyroid completely.
I am in a stage of disease where I am still too unstable to choose radiation or surgery so I take daily medication (Anti-Thyroid Drugs = ATD) to try to bring my thyroid levels to a normal thyroid state. This can actually make a person hypOthyroid, meaning your metabolism is now in slow motion mode versus the hypErthyroid state of full speed ahead. Neither feels good and really the only way to feel healthy is to have normal thyroid hormone levels. It’s a very hard thing to do and it takes a lot of time. Years in many cases. I’ve been fighting since 2008, though I suspect I’ve had Graves disease since my early adulthood, as I had heart issues and had to have a very minor heart surgery to normalize my rhythm (another symptom of Graves).
All of this said – My IRK comes from the lack of awareness about this disease and how people with auto-immune diseases are treated in general.
People with cancer, though they fight valiantly to save their own lives – which is what anyone does when given a diagnosis of the life altering variety – have immense support behind them. They are deemed heroes and parades are given, ribbons are worn and heads are shaved all in the name of fight the good fight!! Many times the cancer is aggressive and it kills the person afflicted but even more many of these people recover! They go on to lead normal, active, healthy lives but now get to bear the hero badge. They get the pats on the back and the thumbs up and, “wow, you’re incredible!”
I just wonder sometimes – where is the support for the people that are fighting a daily battle to get out of bed, to make breakfast, to get to there appointments on time and to try and not isolate themselves because they are in such ill health that they can’t be what everyone else needs them to be. People actually say things that shock me – like, Oh, isn’t that the disease that makes you lose a ton of weight? Sign me up!
Yes, sure you can have it please – because guess what? You also can lose weight sitting on your ass doing nothing because your heart is working so hard to pump because it actually has been told by your brain that you need it to pump harder. You shake, you feel manic, you feel panicked and pissed off and you cannot sleep even though you can barely keep your swollen eyes open, you are hot in 20 degree weather and you have vertigo (motion sickness) because your eyes are moving and the tissues are swelling. So yes, please do take it from me. Enjoy the weight loss because it will one day end. Eventually, once you’re diagnosed and put on medication (that can leave you with no immune system at all by the way) you will start to gain weight. You will continue gaining weight because you will still be too tired to do anything but sit on your ass. You will not have run a marathon, but your body won’t know that. You will have aches and pains and feel like you’re 89 years old and oh this is the fun part – your neck will start protruding. Live in a winter climate? Now you have a permanent scarf because the enlarged thyroid gland is there just to keep you warm!
If you don’t understand a disease that someone you care about has – learn about it. Go to the library or even more convenient….google it. Find out how you can be helpful because even though you may not have seen your friend in some time….I bet they could use a little love and support. No, it’s not cancer – but it doesn’t need to be. It’s still HELL.
Here is a good place to start if you want to learn more: http://www.endocrine.niddk.nih.gov/pubs/graves/