Sunday, July 1, 2007

Endocrinologist Visit....Somewhat of a Waste

Well, in a lot of ways my visit to the endocrinologist was useless. I say that because she tried to tell me the same things that I have been hearing before hand. The first thing she said to me was that she didn't recommend surgery because my thyroid is only 4.1 in size whereas they don't suggest surgery unless it's 6.2 in size (i'm thinking maybe this is in cm??). She showed me the model of a normal size thyroid, and then one of what mine looked like. Basically, my thyroid has become a big useless blob. It just doesn't work. That is why I have been taking the thyroid meds since 2003. I know that removing the thyroid can cause some symptoms and problems to happen. I wasn't there for surgery. I was there to find an alternative to the treatment I have had for the last 4 years.

I've done a lot of research on my disease because it's often undiagnosed, misunderstood, etc. If my doctors aren't going to be knowledgeable as I'd like them to be about it, there is no reason that I shouldn't be. Anyways, I told her that I do my own research to be my own patient advocate. That I had seen many people use combination of T4 and T3 medicines. Let me tell you...I got the speech that her recommendation is to not do anything because my TSH levels were really good. She said that the American Thyroid Association (ATA) also doesn't recommend the combination therapy. She said that if I wanted to try it that she would have to notate that "I" asked to do so. I told her that I still felt the symptoms even with my TSH being as good as it is now. I did mention that this is probably the best I've felt in the whole time dealing with this disease, but I still am tired, body aches, etc. She proceeds to tell me that it could be other things and that it can't always be blamed on the thyroid. I'm thinking that these are the same damned symptoms I had when I first started with this disease. True, they aren't as intense as before, but they're still the same.

The endo told me that she would do 5mcg of cytomel twice a day along with my 137mcg of levothroid with the exception of Sunday...on Sunday, only half of the levothroid tablets. I wasn't able to get the meds until I returned from Las Vegas. I started yesterday and so far have not felt a difference, however, I read that it can take a few weeks to notice any changes. I'm hoping for good changes.

By the way, when I came home from Las Vegas, in my mailbox was a letter from Kaiser saying that my request to see a specialist was denied. I may put a copy of that letter here at a later date. So, I do think my doctor referred me, but only because I started this 'stink'. I think even though I got to see an endocrinologist before this denial letter, that I must refute their decision. If we don't stand up for ourselves we will keep getting the same basic care and not the appropriate care. There are MANY stories where people have died because Kaiser refused to give the appropriate referrals, treatment, care, etc. until it was too late. I'll probably share links to those stories another time as well.

1 comment: said...

the 4.1 and 6.1 does refer to cm, I'm volunteering with the Canadian Thyroid Cancer Consortium (just doing data entry) and although I don't know what a lot of the numbers mean, I was reading sheets 2 days ago that stated "cm" beside numbers like the ones you mentioned...