Tuesday, January 18, 2011

7 More Vials

Going to a new doctor is always such an adventure.  You don't know where you are going.  You don't know where to park.  You have no idea if the office staff is wonderful or a bunch of form Natzis.  Well after seeing three different specialist I think I just hit the doctor jackpot with number four.  Today I went to see an endocrinologist at Lahey Clinic North Shore.  I am in LOVE with this doctor.  The facility itself is quite nice and very clean.  The elevators are too small but hey I'll deal.  She is a petite Asian woman that is smart as a whip and loves her job.  She went through a lot of the papers I brought with me.  Listened to my history.  Quizzed me on all sorts of issues such as my own health, health of my family and generally grilled me on weird symptoms that I didn't even think to put down on paper.  She did a thorough exam and noticed all sorts of stuff my regular doc missed such as my being dizzy, weaving when my eyes are closed, slight swelling in my ankles, etc.  She even tested me for OI without my even asking her!!  Woohoo!!  She then proceeded to tell me her thoughts and her action plan.  Did I mention I love this woman?  I don't have OI but since I have all the symptoms she is thinking that my cortisol levels are totally whacked.  She thinks I've had FM for a while even prior to my getting sick.  Then, when I caught my virus back in May, my thyroid went into overdrive to the point where my immune system started attacking my thyroid (hence the elevated thyroid numbers that showed up during the ID docs blood panel).  As I was recovering from the thyroid problems (the numbers went back to normal within a month) the FM flared due to deconditioning.  She is now the third doc who suspects that some of this is neural so I now have two of them wanting a brain MRI.  So the plan is: ultrasound of the thyroid, lots of blood tests for thyroid and pituitary function, testing of cortisol levels, MRI of the brain and a neuro consult.  She is going to expedite the tests and get together a team of doctors to take care of me including her, a Lahey rheumetologist (the Tufts one said she was only consulting and didn't want to follow up unless needed), and a really really good neurologist (her words not mine).  I am SO excited!!  I mean over the moon excited!  She wants to help me!  She has a plan!  She is getting a team together! This is so awesome!

Another awesome thing that happened was a girl thing.  Since my body got really wacky in September I now cry at the drop of a hat.  Prior to that point I was a stable human being and even though I am a girl I rarely cried.  I mean only once or twice a year tops and it had to be something really horrible.  Now anything will start the tears going and it just gets worse the more tired I am.  I've now cried in my primary docs office and my councilors office.  I came damn close to crying in the lawyer's office and in the ID Doc's office.  Now guys have a universal reaction to this: I get the dumbfound look and then the inevitable "Are you depressed?" question.  Guys just do not get the hormonal thing.  When I burst into tears in her office while I was explaining how stupid and shaky I get she came over, held my hand and told me "what has happened to you is awful and life altering.  I'm going to help you feel better."  She didn't ask me if I was depressed.  She didn't think I was a freak.  I have a patient crush on her.

Oh, in case you were wondering, the blog title refers to the additional 7 vials of blood they took for testing today.  I think I am close to 50 vials now.  And, the first cortisol test requires me sucking on a sponge for two minutes so they can test my saliva.  I just did my first one.  I'm sucking another sponge tomorrow night.  It has to be done at midnight.

4 comments:

  1. Using saliva is one way to test cortisol levels in the body. Urine can also be used.

    In order to collect enough saliva for the test you pop a small sponge into your mouth and roll it around for 2 minutes while it sucks up your saliva. You're not allowed to swallow during the collection and the collection has to be done at midnight since the levels change over the course of the day.

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  2. How wonderful!! So glad you have found such an attentive, interested doctor - that makes such a big difference. Can't wait to hear what all your test results show.

    Sue

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  3. Wow, this doctor sounds wonderful. Everyone needs someone like her. I am lucky that I have two really good ones that listen and understand me. Anyway, I will be interested in your results from the cortisol testing. I am hypopituitary and I have Addison's Disease (adrenal insuff). Maybe I can help you out. Good luck with this great doctor and let us know your results.
    mo

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