I know it's been a long time but since little Madeleine I've obviously had other things to talk about.
There have been some ups and downs over the last 8 months. I saw Dr. Tamagna on Thursday and here is the low down.
First a little education: The thyroid works off what is called a negative feed back loop. The pituitary gland in your brain does many things, one of which is produce a hormone called Thyroid Stimulating Hormone (TSH) and it does just that...stimulates your thyroid to produce two hormones T3 & T4. When more thyroid hormones are needed your pituitary produces more TSH and when you need less, it produces less. This system in my body is derailed because my immune system produces antibodies called Thyroid Stimulating Antibodies (TSA) which themselves stimulate my thyroid to make way too much T3 & T4. When you have Graves your body realizes this and stops producing TSH.
Usually, when you've been taking anti-thyroid medications for a few months the normal system starts working again and your pituitary starts producing TSH and is back to normal by 6 months. Here we are 14 months since beginning treatment and while the medication has finally gotten my T3 & T4 levels in the normal range - my TSH is at a big fat ZERO. This means the disease is still raging and shows no signs of stopping. Over the last couple of months my gland has actually gotten a little bit bigger and my right eye is measuring bigger, too. Despite my relative high dose of PTU. The Thyroid Eye Disease (TED) is a whole other animal for another day.
What does this mean? It means this all just plain sucks. We have switched to the other anti-thyroid medication called Methimazole, just as a shot in the dark to see if my body responds differently. Normally, PTU is considered safer for pregnancy and nursing but some recent studies show that Methimazole may be better for nursing and there is some question about long-term PTU use causing liver damage.
For the future she thinks I should have my thyroid surgically removed and I will just take thyroid replacement hormones for the rest of my life. Especially if I plan on having any more children. Not a decision I am ready to make as of yet, but we'll see. I left her office feeling a little down, in some weird way my always healthy body has let me down. I guess I just thought this would be treated, I would go into remission and it would fade into the background. But that is not the plan, apparently, so I will just roll with it for now. :)
