Shirley ~ I think your perspective, your suggestion to ask ourselves THE question…did we really know what Graves’ was before getting the diagnosis ourselves? I mean “really” know. Like Karen, I experienced a ton of frustration with people…including my own docs even…not fully understanding my new disease. I got so sick of trying to explain it to everyone. I still get sick of it. And I really get sick of the usual response that I “look fine”. Or that I’m lucky it’s not cancer.
And like you, Shirley, I am an RN with a master’s degree…and yet, I knew very little about Graves’ and what people actually go through. I thought it was treatable, that after treatment people were fine on their little Synthroid pill, and that the only eye problem was the obvious bulging. No bulging, no eye problem. Now I know different. A person’s eyes can look swollen, aged, and baggy – and be very sore and have visual issues – and yet no bulging. They’re suffering but I didn’t know that then. I had no idea that a person could be in the therapeutic range on Synthroid, yet still feel hyper or hypo. I had no idea just how bad hypo or hyper could feel, or that you could feel that way and still be within the “normal” range on labs. I knew I needed to help my patient’s avoid a thyroid storm at all costs…and that a storm was serious business, but short of that I think I saw the disease more as a nuisance problem. Not deadly or anything. I sure didn’t get the mood thing or the fact that a patient’s moods are damn near uncontrollable when things are at their worst. Everything about the disease seemed smaller than it does to me now, more manageable. In retrospect, I knew so little about what the disease actually does. And in all my years of clinical nursing, I can only recall meeting one patient with Graves’. So although we see so many others with it on this forum, in reality, the disease is a bit of an orphan.
I think that I’m going to keep asking myself that question Shirley…what did “I” know before “I” got the diagnosis, before “I” lived the symptoms and treatments, and before “I” did gobs of hours of research?
As I feel better and calmer, I notice that my ability to educate others, to make them understand exactly what this is – an incurable autoimmune disease, not just a thyroid problem – has improved. Most people think what I once thought…stop the thyroid problem, stop the disease, stop all the symptoms & eye issues, etc. Oh, and regulating thyroid levels with medication? I thought that was pretty straight forward as well. WRONG! I now tell people that my thyroid problem is ONE aspect of what my autoimmune disease causes. There are others. I fix the aspects I can…TT for the thyroid, later surgery for my non-bulging but still affected eyes, and whatever else may come. I tell them that while there is medication to synthetically replace my thyroid hormones, the range is so narrow and the therapeutic range on lab sheets is arbitrary. That each individual’s sweet spot is in reality an even narrow range & can be hard to pinpoint. And once found, a million little things can change how the pill is absorbed – sending you out of your sweet spot and back to the drawing board. To make matters worse, it takes weeks to find out if an adjustment is right…that’s weeks that may run into months if more than one adjustment is needed. So the possibility of months of feeling really hyper or really hypo. And I describe hyper to them as that feeling you have when you’ve just been severely startled, that feeling that lasts a few seconds to minutes where your heart races and all your senses are on edge and you want everyone to leave you alone until you can calm down. But in the case of a person who’s hyper it lasts all day, all night, for days/weeks/months/years on end…and it’s scary and frustrating and exhausting and stressful and maddening. Makes dealing with even the smallest thing overwhelming. I tell them that Graves’ and all it does and affects is something that I need to manage and watch for life, it’s something with ups and downs, good days/weeks & bad, major victories and defeats. People seem to get that part.
But I wasn’t able to get them there until my thyroid levels were down. I was just too “foggy” and too angry then.
Karen, you are going through such a rough stretch right now. I hear your pain in every post, and I remember feeling that pain so well. I know it doesn’t feel like it’s even possible, but it does get better. Keep on fighting. And keep reaching out. You have a lot of fight in you (and this disease requires a big chunk of that, so “fight” is a good thing!). You’ll win. One battle at a time.
