dissapointing thyroid specialist visit

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, May 30, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    This is a bit of a vent, so be prepared...

    First, I have to say, because of my mixed up sleep schedule, I had been up all night. Then I had to sit up for a car ride, then the wheelchair ride (they had assured me they would have a gurney for me as it's very hard for me to sit up - I don't know why they didn't do it like they said)... so I was doing pretty crummy to start with. Not to mention that everything around me was moving (the floor under the wheelchair, the people in the halls) and the chemical smells in the air. Sensory overload. I had earplugs in, but they can only cut out so much.

    The specialist spent ten minutes or less with me. Plus there was a poster on the wall right in my line of sight of a lady crumpling up through stages of old age due to osteopersis. I hate disease posters!!!! They're creepy. He didn't question me about symptoms, only felt my thyroid (normal, he says), looked at me lying there and said, "Thyroid doesn't do THIS." So he ordered a fresh batch of blood tests to keep things current, and that was about it.

    He suggested the Mayo clinic in Arizona (I think it was somewhere there), and I told him that I hear they don't work for CFS. He asked if I would rather spend the rest of my life like this. Not in a rude way, but in a 'let's be practical about this' tone. I guess I should look on the bright side that at least he believes I'm really sick, but whatever.

    I find it objectionable, firstly, that he believes the mayo clinic has a cure for me (haven't we all heard that enough about something or other?), and secondly, implying that I'm unmotivated to take care of myself. (I'll grow thicker skin later, this is just venting.) And then, he was GONE.

    I chose to have the blood drawn while still at the hospital. Usually I have mobile lab come to my house to take blood, but I didn't want to have to have my sleep interrupted another day. I thought this would be simpler.

    Dad wheeled me through so many halls. It was exhausting. There was a place where the tiles were uneven. I was pretty much about to give out by then. When we got to the lab, there was a crowded waiting room with everybody talking AND a big TV on. I asked dad to wheel me back into one of the side halls so there would be less noise, but it didn't help much.

    Being bombarded like that, first I felt stressed, then irritated, then I wore down the rest of the way and started sobbing. I couldn't help it. Sound does that to me. The earplugs weren't enough.

    It was only after we were driving home that I realized how much this appointment had meant to dad. I have slim respect for doctors, especially ones I haven't met yet, so I hadn't expected anything to come from the appointment. It was just something that I had to do.

    But dad said to himself, "So, it's a mystery illness." Then I remembered that the FFC said that my throid was basically the main problem, and I should be fine if we take care of it. And now this specialist, who we had waited more than six months to see, doesn't find a problem. Dad had a lot staked on this thyroid specialist appointment. It was supposed to be the key.

    Nothing upsets me like having my hopes dashed. I didn't get my hopes up for this, but now that I know what dad was going through, it just plain sucks. I'm so used to this disease that, hard as it is getting through every day, it's normal for me and I forget that I'm sick.

    Mayo clinic sounds like a weak, last-shot idea. It reminds me that I'm stuck sick and there's not much I can do. I mean, that thyroid doc must have seen no way out for me if his only idea is to suggest the mayo clinic. And I'm still sore from FFC not helping.

    The only other thing I have on the go is trying to get in to see a GOOD endocrinologist that dad found through the grapevine. I don't know if he will take me on though. He's very busy and seems to need a lot of persuading. My ambition is to leave him a lot of phone messages until he caves and decides to see me. But I probably don't have the energy for that, and I doubt it would work anyway. It's human to keep trying though.

    Is there a way out of this disease, I wonder now? We've tried as hard as anybody has, for sure. I wish I had an action plan so that at least I had something to work on.

    And now... I wish I could go outside again today. The backlash of any trip out is remembering that I can't do it every day. It strikes me as funny now, looking back, that I didn't envy any of the people I saw in the hospital today, even though they were walking and standing and basically looking pretty good. I only thought about how beautiful they looked and how lucky I was to see them. I wish I could feel human, instead of being only the observer of humans.
    ((love)) Shannon
  2. Shannonsparkles

    Shannonsparkles New Member

    FFC didn't know how to treat my thyroid, and they told me to see a specialist. I don't know why they didn't feel they could handle it. They advised me to have a specialist take care of it. Maybe the new blood tests will show something ususual and they can treat it. I dunno.
  3. LittleBluestem

    LittleBluestem New Member

    Filling up the Good Endocrinologist’s answering machine with messages would probably just annoy him. Could anyone in the ’grapevine’ help you get an appointment. If you gave his name to the FCC, would they make a referral? Some doctors take patients by referral before they take them ’off the street’.

    Have you seen the other post today about thyroid that gave a web site with a doctors list? If not, look for it. You might be able to find another good endocrinologist there.