As I Live and Learn

Thursday, March 19, 2009

The Scare

Because life had been so busy, and then work has kept me busy until about now, I have had a chance to post about this. But here we go....

Last August, before the accident, I had a routine visit to my allergy doctor. You know, "hey, how are ya, how are the meds working" type deal. (Side note: It seems this year is going to hold true to last, where I only need to take the allergy meds during winter and my sinuses stay open throughout the rest of the year on their own.) During the quick physical exam, she said my "thyroid felt full". She wanted me to follow up on that, I mentioned I had an appointment with my PCP (Primary Care Physician) the following week. She told me to mention it. So I did, mention it at my yearly appointment with my PCP, who then also did a quick exam of my neck. She didn't really say anything either way to confirm or deny what my allergenist said, but she ordered some additional blood test on top of my normal ones (cholesterol, et al) and sent me to get an ultrasound. I got the ultrasound appointment, which happened to be during the week Mom was visiting. Thankfully, since I got some sort of ultra bad stomach thing that had me curled in pain for a day and passed out on the floor because I just couldn't make it to bed. But that's another story. Mom drove me to the ultrasound, and life went on.

The blood work came back normal. I called a couple times about the ultrasound, and waited. Eventually it became clear something communication wise was wrong. My doctor's office never called with the ultra sound results, and when I called over a month alter they said they never got them. But I got side tracked by the accident, trying to get a new car, and the vertigo. After I healed from that, the ultrasound came back to my thoughts. Possibly because I had developed a weird cough. Every morning I'd wake up, and 5-20 minutes after I got out of bed I would have a coughing fit. Then it'd be over just as suddenly, and no more coughing for the rest of the day. ODD.

So it's October, and I'm starting to wonder what's going on. I called the doctor's office again, and not only do they not have the ultrasound results, they ask me where I went to have the test. I don't remember! More annoying yet, I was on an HMO last year, so everything I did outside of my PCP required a referral. I had one, that the doctor's office printed off for me, which means it was in some system somewhere, both with my insurance company and with my PCP. But no, they didn't know where I had gone, and apparently didn't know how to find out.

I realized I way going to have to track down my results the hard way. And it was. The best I could dredge from my memory is that I had gone to some place in Dearborn (well that was the easy part, EVERYTHING I do medical related is in Dearborn due to the healthcare network my PCP is in. Drives me crazy). I also remembered what the inside of the office looked like, and – so I thought – the outside of the building. But when I called around trying to describe the building I wasn't getting anywhere. Finally it dawned on me the building I thought I remembered having the ultrasound in was actually the building I saw the orthopedic for my knee in last Spring. :p So I was left with even less to go off of.

Now it's November. I finally find time to do my own version of detective work. How? I got on google and searched for thyroid and ultrasound in Dearborn. After refining the search a few times, I found about 8 radiology places in Dearborn that I possibly could have been sent to for the ultrasound. Then I hit Google Maps for the street view, putting in each of the 8 addresses one at a time, and "looking around" the streets for anything I recognized. And it worked! I found the building I had gone to after first thinking I recognized one of the businesses across the street, and then messing around with moving "left and right" and zooming in and out on signs to make sure I really had the right place. Sure enough, Fairview Radiology.

I called them, and because I had the appointment in my calendar I knew exactly what day it was, and told them I had had an ultrasound in August that my doctor hadn't yet received the results for. The woman on the other end of the phone was surprised to hear that, but she must found me in their records because my doctor's office called me two days later. They didn't give leave the results on my answering machine, which is typical. When I called back a few days later, I still didn't get results. I was told my doctor wanted me to follow up with an endocrinologist. I was given a name and number, that was it.

So I called the endocrinologist. And, much to my frustration, the woman said I couldn't have an appointment until late January! That that was the first new patient appointment available. And, of course, new patient appointments were only smack in the middle of the day. No accommodation for having to work. Gr. Oh well, I scheduled it, and decided not to hold my breath. That was TOO LONG to be fretting, stressing, and worrying over the lack of information and lack of help I was getting. The holidays were about to start, between that and the Dec work deadline no time to think about maybe or maybe not having a health problem. I was in the system, all I could do was wait for it to work.

In the end, I was glad my PCP didn't give me the ultrasound results.

For my appointment with the endocrinologist, I had to bring my test results from my PCP: the blood work and ultrasound. I picked them up that morning. And, of course, I read through them while I've got them. What did the ultrasound say? I have a 1cm mass in the right-side of my thyroid, and that testing to determine if it was a cold mass was recommended.

So yeah, say what you want. It was ridiculous, outrageous even, that it took 3 months and me having to track down those results before they made it to my PCPs eyes. And then 2 more months for me to get in to see an endocrinologist to have something done about the results. BUT, I appreciate that my PCP didn't tell me the results right before Thanksgiving, so it wasn't hanging over my head for that, Christmas, and my birthday. I got to enjoy them all without the fear. Twice I had to quickly stifle the family gears that would have set the wheels of law in motion. I didn't want to go that route, at least not until I knew if I was actually fine.

Okay, enter the fear.

Not quite random side-note: Before the visit to the endocrinologist, I went in for my bi-annual cleaning and dentist visit, I think it was late December. And there was a new hygienist as one of the two had moved away. I didn't much want the new girl, but the other one whom I knew was busy. Ah well. This new girl was asking me questions, as is typical at my dentist's office. Everyone is chatty, it's nice. But at one point she looked at me and asked if my eyes were always "like that"? Like what? She wouldn't tell me. It was pretty annoying, she harped on it for a minute but wouldn't explain what she was talking about! Grr.

Back on track. The endocrinologist kinda broke things down for me. First off, the cyst on my thyroid was of no concern, nothing to worry about. Okay good. As for the mass, it was most likely hypo-thyroidism or a goiter (but he didn't explain either) and he was going to test extensively for both. Blood tests, which I did the next morning at my PCPs, and an iodine uptake test which I managed to schedule for a week or two later. However, I was also to get a biopsy of the mass, to be sure. He would do it himself, with an ultrasound guide because he couldn't feel the mass from the outside. He said he was surprised my allergenist caught it, as my thyroid didn't feel anyway outside of normal to him. But then again, she'd know that part of my anatomy better and it's possible "normal" was not normal for me. The biopsy would be about a month later.

There was stuff around the patient room I was in that talked about hypo-thyroidism, so while he was out I read up on the bullet points. I had around half the symptoms, which include: high cholesterol, severe menstruation, unexplained fatigue, hunger without weight gain, and eye protrusion. For months before the appointment, even before the coughing started, I'd have days where I would seemingly constantly be hungry. Even after eating full meals, snacks and more, I'd still be hungry! And then I'd either not have gained weight or have lost a little. No clue why. For at least a year, or maybe just since my new job, I'd sometimes get tired, not tired as in I need to sleep, but tired as in my body and possibly my mind would just be unenergetic. I thought perhaps it was me being used to my new schedule, but the tired I would get at night if I stayed up past my bedtime was not the same kind of tired that would sometimes happen in the early evening. *shrugs* Severe menstruation I've had since my third period, when I was 12 or so, until I went on the pill as hormone therapy specifically for the severe menstruations. And my cholesterol tops out at 292, with my "best efforts" in diet and exercise only managing to drop it to 260-ish. But there's high cholesterol on both sides of my family, so that could easily be inherited.

As for my eye, it has always been like this. And by this, I finally got an explanation from the endo, it means that my eye ball sits further out in my eye socket than typical and (thus?) my eye lid doesn't cover my eye the way it should. And so one of my eyes looks more closed than the other, or it looks like I have a lazy eyelid. But I know I've had this for at least several years because I remember trying to get sunglasses after I started wearing contacts, and having a hard time because one of my eyes (my left) would always hit the lens, really annoying. So I can only get sunglasses that I can bend to form to my face. I thought the problem was one of my ears was further back than the other, but now it turns out it's my eye itself.

I also remember back in 2003 right before I moved to MI, my doctor back in MA ran some blood tests against my thyroid because I had lost a bunch of weight in what they said was too short a time (a few to several months, I don't remember now). It was only about 10 or 15 pounds, and the tests came back normal. But it occurred to me now that maybe back then there were early warning signs.

But, back in the here and now, I had to face that I might have something else. It was completely possible, and the MOST likely that the mass was benign. But... what if it wasn't? :( Dear God, I was only 29, er 30. Just... too much emotion, too much thought.

I went and cried to Lisa. I prayed. I asked Mom to ask her church to pray for me. I had to not think about it.

And after that first day I was mostly successful. Through the idodine uptake testing that took two days, which happened to occur right after I tweaked my back, and ended up contributing to royally rooking it up, so much that I had to lay on my stomach for a couple days, over even sitting. I did occasionally think about how I should/needed to call my allergenist and thank her, because she might have saved my life, but I didn't let the negative stuff in. But then it was the day before the biopsy, and my mental defenses weren't strong enough to keep some thoughts and other things from seeping through. I wasn't a wreak, but I was nervous, with a low hum of fear forming the background noise for the day. I managed to get to sleep, though not early enough for the early rising I had to make. But giving the worry, it didn't feel like I hadn't slept enough.

I got up, out, and to the hospital in some town downriver I've never heard of, all while it was still dark. I made it just before my appointment time (I've been putting in extra effort and tricks to get to everything in my life on time or early now instead of 5-15 minutes late, because of my birthday party – that's a whole nother story). Sign in, sit and wait, thankfully not very long. Get taken back to the procedure room, where there's my endocrinologist, a radiologist, a nurse, and a student. I almost never mind having students involved in my medical care, they need to learn, and I trust there will be doctor care during or after. Anyway. Lots of hubbub going on. My endocrinologist asks how I'm doing, my answer "Nervous". I ask how things are going to work, incision wise and what not. The endo says there won't be any! He's just going to use a needle to poke in and get a bit, here and maybe there. SWEET. No wonder I was told not to worry about someone having to drive me and that it would only feel like when you get numbed at the dentist's office for teeth work.

I get situation on the bed-like thing, have to extend my head back so my neck is fully exposed. Before my endocrinologist goes to numb my neck, the radiologist starts the ultrasound to find the mass so they know where to poke. And the exchange goes something like this:

"Where is it?"
"I don't see it."
"What's that?"
"There's nothing there."
"Do you see what I see?"
"That's a vessel."
"Are you sure?"
"Go up higher"
Wand moves up on my neck.
"Try the other side."
Pause, the wand moves over to the other side of my neck, goes around once.
"No, no" and "No, nothing" they both agree aloud.
"Go back to the right side."
Pause, wand moves back.
"What was that I saw before."
"Did you see what I saw?"
"It's just a vessel."
"It's a vessel?"
"Go back and look. That, there."
"Let's take a picture and see."
Pause. Wand moves a bit, taping on the machine's keys, wand moves a bit, tapping on machine's key. Both doctors lean in to look at the picture on the screen.
"It's a vessel," they say together with certainty and nods.

Then there was "Okay, we're done." and "I'm canceling the biopsy." My endo said he wasn't going to poke in at things that weren't there! There's no mass in my thyroid, at least not anymore. JOY! My endo said something to the effect of "You must have said your prayers this morning." I smiled, half with relief, half with happy, half with shock, and half with nervousness still, and said "OH yes, and I had others praying too." I'm not above that.

So the best news was, No cancer!

The following week was my follow-up with the endo to review all the test results and what's next. I kind of wanted to have hypo-thyroidism, because even though it would mean taking a pill everyday, it would explain a LOT. Plus that would be trading in two pills I take everyday to take only one. But, no. Everything but one was normal, and the one was only 6% elevated, which was still within tolerable limits. I was told "no intervention" and no medication was needed. Thyroid-wise, I'm completely fine.

I have another round of blood tests and another ultrasound to do in August (6 months from the last appointment) as standard procedure to follow-up and be sure.



Blogger O.T. said:
I enjoyed to read your story.
The palpation of the thyroid is only 30% accurate[that is why we sent home 3 patients with "possible nodule" after the ultrasound; the nodules never were there]
The ultrasound itself must be high frequency high resolution and in the best case should be done by thyroid doctor not by technician.

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