Thursday, August 30, 2007

My thyroid doctor is happy, which scares me.

Have you noticed that some doctor’s are “disaster chasers?” The worse things get for you, the happier they become. I saw the doctor regarding my thyroid this morning; because the blood tests had come back. These were the tests that had already been done by another specialist, but he wanted them completely redone in a different lab. I knew with the results back the only options were a) found something and more tests, b) found something and treatment, c) found nothing and more tests and d) found nothing and ‘see ya later.’

The doctor came in. He was happy. I should have known this was a bad sign. Last time my T4 was low (whatever that means), this test my T4 was normal BUT my (something something) was abnormal (to quote him: “Most people are ‘comfortable’ at 2.0, you are at 6.0”). He thinks this means that my autoimmune system is attacking my thyroid which causing it to change readings all the time. I must have had a “freaked out” look and I said, “Autoimmune attacking?” so he told a story to show me how 'common' this was.

He is treating a cyclist who races. The cyclists thyroid is all over too. The doctor put him on medication. The medication made him MUCH sicker and he begged and pleaded to go off it. The doctor took him off it. Then he was retested. His thyroid was off again so now he has been put back on medication. End of story.

THAT was his story to calm me down? Now I am even more freaked out. I don't know which is worse; what is going on now or being treated for what is going on now? The doctor tells me that the autoimmune will likely continue to attack my thyroid until it is destroyed. But that is why often the thyroid is removed.

Personally, in calming patients down I really think doctors shouldn’t use the words “Destroyed” and “removed” next to each other when talking about an organ.

“But...but...in the letter” I pleaded, “You said only half my thyroid had a goiter, can’t we save it.”

“Let’s not get ahead of ourselves.” He says closing off the subject.

He checks and yes, I still have a goiter. So what do we do now. More blood tests. But he already thinks my thyroid is in flux due to the autoimmune so how many more tests are we going to do? Best not to ask. But he agrees that when (if) he treats, I might get some more energy.

He reminds me that this will not fix my heart or neuro problems.

“But, if it is in flux, shouldn’t I get days when I feel really great?” I want to know, “I think I am being cheated.”

“It doesn’t work like that.”

Suck!


So in the end, doctor actually smiling because now there are two DIFFERENT abnormal results. Doctor using the phrase “patient pleading” and the words "attacked", “destroy” and “remove” in the meeting and now...more tests.

Damn it, I hate it when they give you hope.

9 comments:

kathz said...

I think all my knowledge about thyroids comes from a Lord Peter Wimsey story about thryoid deficiency and an oppressive husband - do you know it? (Any chance Lord Peter could come to the rescue?) Anyway the story gives the calming impression that people can function without having a thyroid at all so long as they take something called thyroxin. I don't know how accurate/knwledgeable Sayers was and it was a long time ago. (I think the collection is called Lord Peter Views the Body and the stories have occasional Gothic elements, showing Sayers' unusual acknowledgement of the Gothic as one of the roots of detective stories - she read Braddon and Lefanu.) If only detective stories could cure all life's problems.

I hope the sleep-over buddy was OK.

KateJ said...

Aren't doctors so really annoying when they're obviously guessing what's wrong and/or what the appropriate treatment should be, but instead of admitting they just DON'T KNOW, they throw all sorts of science-y stuff at you, patronise you etc... especially if you are a woman and either elderly, disabled, pregnant, with children, childless... in fact if you are a woman of pretty well any description. Just going by the number of times it has happened to women in my family or friends, ending in serious mis-diagnosis, lack of treatment and - especially galling - when you then get labelled as having some mental health problem. So next time you question the doctor or argue at all, you're just labelled as non-compliant or 'in denial' about your condition.
Why can't they just admit they don't know?

Daniel, the Guy in the Desert said...

"Cheerfully ghoulish" is NOT the best bedside manner for a physician.

Did you and the sleepover person make S'mores?

Cooper said...

Just my two cents - get another frigging doctor...this guy just sounds like he cares more about bilking the insurance than treating you properly...

Sober @ Sundown said...

On a positive note, at least there is progress....... about as fast as an amoeba travels, but progress none the less.

Someday, hopefully before you grow gray, they will have a good idea what is wrong with you.....

Penelope said...

I had an overactive thyroid until we killed part of it off with radioactive iodine. Now I have an underactive one. kathz was correct that they can remove thyroids (or do what I did) without it causing problems as long as you take some sort of thyroid replacement hormone. It's a lot easier and nicer than thyroid suppressants (I don't know this from experience as taking them wasn't really feasible for me). I also have friends who've had thyroids removed due to cancer. The ease of replacing thyroid hormone is probably actually probably one of the reasons thyroid cancer can be easy to treat (you can just remove the thyroid all together as long as it's not spread).

I do agree with cooper about getting another doc if you can, though. Some of the stuff he said makes no sense to me at all. I've never heard of an autoimmune thyroid problem fluxing between over activity and underactivity, for example. Also, thyroid problems *can* cause neuro problems, just not to the level of the neuro problem you have.

Elizabeth McClung said...

Kathz: I thought I had read all Sayers, but that one must have slipped through - the sleepover was a bust - grrr.

Katej: I think this doctor knows more than he is telling, what I want to know is when will any of them outline possible treatments?

Daniel: It was more like she read magazine and then went to bed, it was odd, very high school where she was the beautiful in-crowd and I wasn't and excluded...except it's my place?

Cooper: I will definately be getting a new GP - which is a start I hope. Thanks

Sober: I know what you mean, it is sort of like they are waiting for black spots to appear all over my body or something.

penelope: thanks, I think that people with autoimmune problems are more likely to have thyroid problems or something like that - to be honest, I've stopped reading up on stuff because all it seems to get me are more blood tests.

kathz said...

The story is called "The Incredible Elopement of Lord Peter Wimsey"

KateJ said...

That Wimsey story is interesting... my mum recently had all sorts of health problems, including her hair falling out. Seeing as she's 80, she thought it was perhaps just a natural process, but it turns out to be a symptom of the thyroid deficiency that was causing so many of her other health problems, and which the doc hadn't spotted. I remembered the story, but assumed the doctors had checked thyroid. Peter Wimsey ought to be compulsory reading for all medics.