Hi Suzzane, so nice to hear from you.
I do have a lot of respect for gut feelings. And you might be absolutely right about all this that you feel, related to your ATD.
Graves’ is a tough thing to have, in every aspect of our lives. BUt we are stuck with it, and pretty lucky to have as many choices to have a lot of hope of gaining “ourselves” back to when we had never heard of it. Of course you want to feel well, not have all these aches and temperature changes, not to mention the anxiety and other crap that goes with being hyper. It’s hard.
To further complicate the issue, we bump along in life with a lot of other “parts” of our body, and sometimes we get normal stuff, and attribute it to Graves’ or the meds we take, and other times it is a completely different problem with our health.
Now, having said all that, I sure hope you can find a doctor who is caring, concerned, and REALLY listens. In this world, with all the pressures of health care providers to limit their appointments to 20 minutes, this is hard to do. But they are out there. Especially, with something like Graves’ (which we actually DO have the rest of out lives, have the continuity of the same doc over times, who begins to really knows you, and realizes that when you call or email (can you do that where you live?) that you are an informed patient about yourself. Is this possible, in your health care plan, to find one doc who is YOUR endo?(after you find the right one.)
Of course, our responsibility in all this, is to give accurate information about how we are feeling, and definitely provide the objective knowledge that they cannot possible know (pulse rate, blood pressure, etc. when you feel symptoms of hyPER and hyPO.) For that can help them help you with a change of dose of medication, and sometimes is very important to know. In other words, docs can help us more when we are good reporters (:
So, having said all that I have a couple suggestions for you for the future, with any doc and office, anywhere.
1. At every office, ask for a medical release of information permission form (or words to that effect.) Fill it out so that records of all visits (what the doc has written after you have left) all labs and other tests, sent to YOU for your personal medical file. This is helpful for you won’t feel so disempowered, and you will know what they are thinking about-AND what misunderstandings might have been written down by them that you can clarify in the next appointment. It is your right to do this, and no office should question it. But they can’t give you copies of your medical records unless you DO give them permission.
2. Now, the labs. It is a good idea to have them in your file. We don’t really have to study them a lot, and we can make our own decisions by ourselves about our treatment based on them. Still, it is helpful to know. Most lab results have the result, plus the “range,” or the general standard normal range stated right next to it. So when they flip the computer over for you to look at, ask for a copy. they might give it to you on the spot.
Lastly, all of us are complex people, so your (or my) symptoms can be totally unrelated to Graves’. When we are in the beginning of Graves’, especially, we tend to assume that anything that happens to us is related to Graves.
Or, again, it may be your ATD. IT’s all a mystery. I sure hope you have some success with good communication and good treatment.
Shirley