Well, I had my first appointment with my endocrinologist. I like him pretty well, which is good, because I have this feeling I'm going to get to know him real well.
He had some good-natured grumbling about how early I was showing up - I.e. most patients don't show up in his office until they have unmistakeable symptoms. Contrariwise, I'm so early that most symptoms are equivocal - tight judgement calls about what's going on. My fingers have gotten bigger - is it bone growth (definite acromegaly), or soft-tissue growth (could be acromegaly, Cushing's, or something else). Likewise for pretty much every other symptom. Dad's firmly of the opinion it's acromegaly, but Dr. Williams has to show some concrete evidence for a diagnosis - and he doesn't have a baseline of what my face and hands looked like ten years ago.
This is actually a pretty common problem in the specialties. Doctors don't see their patients until they're already sick, so they don't know what "normal" looks like for this particular patient. A friend of mine from when we lived in Iowa had this problem big-time. After some heavy (near toxic level) treatments for a neurological disorder, she noticed that her school performance had dropped dramatically - from A's at a private college, to struggling for C's and B's at a community college. Her neurologist tested her, and she tested out normal, yet she was plainly not normal for her. The lack of a baseline meant that the neurologist couldn't tell what had changed. This is pretty much what's going on with me. My hands aren't outsized beyond the norm (though they are large), my face looks like an ordinary face. Nobody has any objective measurements of what my face and hands and skin condition were like a decade ago to compare to. At best I can pull out some photos from my wedding to compare - and even then it's a case of "is it bone growth or soft tissue swelling?"
The first blood panel shows normal GH, borderline cortisol, and high TSH. Since one normal GH draw means about squat, we're working from ground zero to find out what's going on with my hormones. I had a second panel drawn Monday. Tuesday I had an elimination test for Cushing's. I should get results back from those on Friday or next Monday. Then if the Cushing's is negative, we proceed with the tests for acromegaly. If the Cushing's test isn't negative, then we proceed with the positive tests for Cushing's. (The negative test means: if it's negative, I don't have Cushing's, but if it's positive, I might or might not have Cushing's) In and around all this, we'll be chasing the high TSH levels as well, and trying to figure out what they mean.
I've been deemed "interesting". I could really have lived my life without becoming interesting to an endocrinologist.
9 comments:
Hi! Wow, the suspense continues.
I totally know what you mean about the whole "normal" thing is like. Like, sometimes my levels are just over the "line" for normal, or just under, but I always feel like the levels are not normal FOR ME! Being Asian, I've always had slim hands/feet and almost zero sweat/body hair, which are the usual tip-offs. I mentioned all my issues to a GP 5 years ago, and every symptom was dismissed individually, the dots weren't connected until much later.
Again, it's SOooo good that you have your dad as your personal medical advocate!
PS did you have a timed glucose tolerance test?
The glucose tolerance test will probably be sometime next week. Dr. Williams wanted to get Cushing's out of the way first since my cortisol was borderline, and there is a one-step elimination test available - which of course there isn't for acromegaly.
If the Cushing's test isn't negative, then I get a 24-hour urine collection - woot!
As I told my husband - there's something about having my dad say "You have acromegaly," tossing me in an MRI, and pointing to an adenoma that makes me inclined to think he knows what he's talking about. Though I can understand that Dr. Williams can't (and shouldn't) simply take Dad's only partially supported opinion.
Hello
I want to let you know that I am following your blog (and PolarChips too), and Thank You for blogging about your experience.
I am a 44 yr old female. I have not been well for years. Recently I figured out that I have 10-12 symptoms of Acromegaly. I asked a primary care physician about it, but the physician said that it was very unlikey. I twice asked for the IGF-1 and the growth hormone tests but was refused.
I wish you the best in your diagnosis and treatment. It sounds like your father really helped catch this in the early stages.
Best regards
Mary C.
Glad to get an update about your health. It sounds like the doctor is addressing a lot of different options regarding the tumor. Glad you'll have an answer soon about where this is all going. Just stopping in to say hello!
I had a dream last night that I was your friend with the neurological disorder! In my dream, I was taking a SAT/ACT like college aptitude test, and I could barely answer any of the questions. I had to skip questions all over the place, and I knew I knew several of the answers, but I just couldn't access them.
I begged the woman proctoring the test to let me shred my answer slip instead of scoring it and putting it on my permanent record, but there was some rule where it has to be scored, and I already signed a release to do so. I considered ripping it up right there but I knew they would grab the pieces and tape them back together. I was crying and very upset, because this test affected my whole future. I tried to explain to the woman that I had brain surgery and that's why I was having such a hard time with the test, and that this wasn't normal for me. I showed her my MRI's and a slideshow of me before and after surgery, trying to soften her heart make an exception for me and cancel my test. What a nightmare, actually!
And Mary!
Definitely go get a second opinion (maybe go straight to an endocrinologist?)! You have to insist on the tests! Ask for a MRI too! I was initially deemed "suspect" by an opthamologist who noticed that my vision was impaired (after an optometrist looked at me 2 month before and just gave me a new prescription!) My GP never had a clue, and was shocked when I came back with a diagnosis. Acromegaly has SUCH a history of delayed/mis-diagnosis.
Whatever they find or don't find, I hope you feel better.
Have you had an IGF-1 test? It's a simple one off blood test which was the first one I had before the further tests to confirm Acromegaly. (i.e. the Glucose tolerance test which is a real bore!)
Anyway, I'm glad to hear that things are progressing for you. Please keep blogging, I look forward to reading how you get on.
Jason
It's a pain that acro can be so hard to diagnose. I had so many symptoms that came on gradually over the years that I never suspected they were related. By the time my tumor was discovered last August it was already the size of a walnut! I had surgery last December. Good luck with your diagnosis. I hope for your sake it's not acro.
Jenny
Just checkin' back with you to see if there was an update on your tumor. Thinking about you and hope you are getting some answers!
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