I can't believe I'm paying for this

[hel_ana]

It's ironic that the first letter to the editor in this morning's St. Pete Times came the day after I realized how incredibly poor the care I'm receiving right now is, in comparison to the care I received last year in Canada. (First of all, I am incredibly suspicious of anyone who says "the Canadian system ran out of money in December", given that each province has its own health care system. Obviously, he's ignorant enough of how it works that I really question the veracity of everything he's saying. And since my mother's worked in that system for thirty five years, I think I'd remember her coming home one day in December and saying "I don't have to go into work for the rest of the month". That never happened. I'm calling bullshit.)

So anyway. I went in yesterday to get bloodwork done in preparation for the planned test on Monday/Thursday. I've been off my meds since late April. Six weeks. I was told by the hospital scheduling people to come in on June 2nd for the bloodwork. So in I toddled, only to be told (when I asked) that the results wouldn't be back for 3-5 business days.

I started screaming bloody murder. I phoned both my doctors, I went over to radiology/nuc med, I phoned nuc med and left a message, since they'd left for the day.

Good thing too. I got a phone call this morning from nuc med, in which we started to get things sorted out. The nuc med unit secretary phoned the doctor's office, and then phoned me back. The results were already back, which is good.

But my TSH, after close to six weeks off meds, is 2.13.

2.13

It needs to be >30.

So, needless to say, I won't be having the procedure next week. We're tentatively rescheduled for 2 weeks from Monday.

And yet, if I'd just been a sheep, if I hadn't kicked and screamed and kicked and screamed, I would have gone in on Monday, swallowed the pill, and then found out that it wasn't going to do any good.

Comments

[eve-the-just.livejournal.com]

I worked in the finance-related end of hospitals. And no, we totally "ran out" of money all the time. We threatened to close wards, we were on loans from banks, we did everything to get more from the Gov't, or at least to slow the cuts. And it was all pretty widely publicised, as the only way you get attention is pushing it into public view and pressing people's buttons until they push their representatives. Health care is in pretty dire straights, but I think Canadians force the gov't to come through every time.

[hel_ana]

Sure, I know that hospitals run out of money all the time.

But the *entire* Canadian system doesn't "run out of money" one month and tell everyone to come back in January to have their kid or urgent heart surgery, which is what the guy was claiming happened.

My mother still went to work. She still got paid.

[eve-the-just.livejournal.com]

Well, yeah, he was an ignorant buffoon on crack to be sure. But we do need to find some way to better manage our healthcare dollars up here. Or to get the government to put more money into health care and maybe let a few other less useful, less vital programs bite the bullet.

Unless of course you live in Alberta. Where a government is riding on the coat-tails of the oil industry, bragging about being the only province out of debt and thinking that this oil fortune is going to go on forever, with an idiotic public that backs them for "eliminating the debt" as if it was some kind of challenge. Then you spend anything you like on anything at all because the oil wells will never run dry!

[hel_ana]

Oh, absolutely. There are problems with the Canadian system to be sure. Underfunding by the feds is one such problem, especially in relation to their stated commitment under the healthcare act. People use the system inefficiently, there aren't enough doctors in many areas (which leads to problems like durga_kali's relatives in SK face), the administrators in hospitals do stupid shit.

But when the per capita spending in the US on healthcare is 2 to 2.5 times the per capita spending in Canada, and the standards of care that I'm receiving, for the same condition, are so much lower than what I received in Canada, to say that the US system is better (which I hear all the time down here) is laughable.

[eve-the-just.livejournal.com]

to say that the US system is better (which I hear all the time down here) is laughable.

Yeah, but what do you expect? Part of being American is being the best at everything. Or at least claiming and believing you are, despite any evidence either in favour of or against your claim.

Canadians have blind pride too, we just apply it differently. Damnit, we ARE the first nation in hockey!

[lesliepear.livejournal.com]

Six weeks off meds and that low of an TSH? That seems strange? I'd ask for a retest.

I start the diet Monday. Blech :(

[hel_ana]

The doctor's supposed to be calling me back this afternoon. I'll talk to him about a retest then.

[lesliepear.livejournal.com]

You might also want to mention this on the thyroid community or yahoogroup.

[hel_ana]

I'm not on the yahoo group anymore.

[lesliepear.livejournal.com]

If you want me to ask for you and forward I can.

[hel_ana]

Sure, that would be cool.

At this point, I figure there are three options:

1) there's still thyroid tissue lurking in my body and it's producing hormone.

2) the lab is messed up

3) I'm a medical mystery.

Obviously 1 is a huge, big, flashing bad thing, since we can't treat it as if it's benign thyroid tissue.

[hel_ana]

I saw your message.

If they ask, I've always been on 175/Unithroid + 10mcg Cytomel a day.

I went off the Unithroid six weeks from Monday (April 25). He told me to take Cytomel "as I felt I needed it" until the 23rd of May. I was taking the Cytomel roughly once every three days until May 22, up to 20mcg a day as I felt the day warranted.

I've been completely drug free since May 22.

[traballenguas.livejournal.com]

Yep. The US system is pretty poor, even when you have coverage. I had one of the best plans going, and it was a big hassle. Plus, you often get nicked and dimed to death with co-pays. In Spain, all the facilities are old, you have to wait for some stuff, and it helps to have connections (like in the US), but I can see my doctor whenever I want, I don't have any co-pays (which are especially irritating when you have to do something like PT three times a week - $10 for every visit?!?).

Just a quick question - you theoretically have no thyroids left at all, right? The idea was to have them completely destroyed to get the tumor, I think? Did they test your T4? Are you producing thyroxine somewhere? And how are you feeling? Totally wiped out?

Hope things are better with the next tests!

[hel_ana]

They tested T4, free T4 and T3. I didn't get those numbers. I will when I talk to the doctor.

[traballenguas.livejournal.com]

Well, let us know. I really don't know how long it takes for your TSH to go up - mine was around 140 when they diagnosed me, but who knows how long that went on.

It would be interesting to find out what is going on. Good luck!

[hel_ana]

It should go up considerably faster than it has. Six weeks should have it at about 60.

[durga-kali.livejournal.com]

I know I don't know you well or know the details, but I have to voice my opinion. The medical system here or in Canada is like everything else you have good and bad doctors, nurses, hospitals, etc. One of my favorite jokes is "What do you call the person who graduated last in medical school?"...."Doctor"

Rather than a poor system it may be poor medical professionals. My Mother and my Aunt have problems with their thyroids as well, one has Addison's and one has Grave's. It took a few doctors and lots of trying to get things right.

My family is from a little town just outside Regina in Saskatchewan and they get horrible medical care. So I think it is an all over issue.

Regardless I hope you feel better. As someone who has gone through hell with her health in the last year and half, I know how frustrating it can be.

[hel_ana]

Sure, bad doctors are always part of the equation.

But I've never met doctors who talked so little to each other, or to the patient, and I do think a large part of that is systemic. There's an economic incentive for them to limit the amount of time they spend on overhead like patient education/consults with other professionals/consults with me, in that if they limit that overhead, they can see more patients and thus bill more to the insurance company.

I have photocopies of all the consultation that was done back and forth between the surgeon, endo, and nuc med doctor for my treatment in Canada. It's quite voluminous. They all CC'd each other on test results. By this point in the process last year, I'd had 2 phone consults with the nuc med doc. I found out this morning that there *was* a nuc med doc at the hospital, but I won't really be dealing with him at all.

Now, I will concede that I had the best family doctor in the city I lived in, who referred me to the best surgeon in the city, who only worked with the two best endos in the province. So I was getting top notch care.

It could be that the endo I'm seeing now is the problem. However, he's not directly responsible for the glitches that occured at the hospital (I shouldn't have been told to call scheduling when I was, and they shouldn't have told me to use the lab they did, and the technologist who rescheduled my appointment back in April should have told the unit secretary that he'd rescheduled me. I was, they did, and he didn't.)

The points of error have been occuring all along the process, and if I wasn't aware of my own diagnosis and preferred treatment plan (and why), I'd be lost in the shuffle.

In contrast, enough time was spent on patient education by the doctors I had in Canada that even if I hadn't known it all going in, I would have understood it coming out.

[lesliepear.livejournal.com]

I guess I'm lucky I was able to use Sloan for my post surgery care. They are super specialized for this sort of thing. The drawback was them being out of network last year for it and having to switch for 2005 to get them in next work.

But I still had to do some coordination on my own between my local endo, the surgeon and Sloan.

[hel_ana]

::nods::

I'm sure that part of it has to do with it being typical Florida wackiness -- apparently doctors often come here to semi-retire, plus generally most of the endos around here are diabetes guys who get the occasional thyroid.

The endo I had in London did 25 thyroids a month.

[lesliepear.livejournal.com]

My late dad who had emphasema + asthma and was on the east coast of Florida used to complain about the quality of doctors also. He felt one of the best checkups he had was when he went to Duke University in North Carolina to see if he'd qualify for lung reduction surgery (he didn't alas).

[durga-kali.livejournal.com]

Communication is a major problem. When I was in the hospital I had nine doctors at any given time and getting them to talk was like pulling teeth. When I was awake I finally had a fit so they would tell me what was going on. My family doc had one too and that took care of it. All of this is just one reason I am going to go into bioethics in law school.

I think ultimately it comes down to patient responsiblity, which you obviously have. I have noticed at bad trend of poor medical staffs. If I did not adore my doctors their staff would have run me off. I have talked to the doctors when it is a problem and 9 out of 10 times it changed.

[iamnikchick.livejournal.com]

My sympathies on the health care thing. The four years I lived in Canada were an eye opener for me. Being self-employed in the US makes the sucky health care situation suck even more. Too depressing to contemplate, really.

[hel_ana]

Thank you. :)

[megiddo-lj.livejournal.com]

Blergh.

Kick their butts.

[hel_ana]

On the up side, the unit secretary of the nuc med department at BayFront is a) nice, b) helpful and c) actually gets back to me.

[hel_ana]

But I'm having a cheeseburger for lunch, dammit.