Our celebrity spokesperson is better than yours!

[pjthompson]

You know, thyroid disease is a serious problem. Because the symptoms are easily misdiagnosed as other things, it's often ignored, which sometimes leads to tragic consequences. The thyroid effects almost every function of the body, including emotional stability, so having a gland that's off kilter and pumping bad hormones into your system is not a good thing. As someone who has had thyroid disease most of my adult life, I take this seriously and urge everyone to get regular thyroid blood tests.

However, the near oh-goody-she's-sick glee just below the surface of this article is symptomatic of a disturbing trend I've noticed in "Disease Clubs": the celebrity spokesperson. "If only someone really famous would get sick with our disease, then we'd really get publicity and funding!" And, boy howdy, Oprah trumps just about everybody.

Am I the only one who finds this weird?

Comments

[mrngglry98.livejournal.com]

It IS a little weird but, as mentioned in the article, you can't deny the fortuitousness for the thyroid..."industry"? Hopefully no one's actually wishing illness on someone, but I understand the desire for underfunded programs and other such things to have someone as influential as Oprah on their side. As we were discussing in our social work class, one of the ways things get done is to have someone in the elite class take a sudden interest. It may be sad, but it's true. The only reason Jesse Ventura (when governor) added funding to special education in Minnesota, for instance, was that he had a child with special needs. Otherwise, why would the average person of privilege care about someone without it?

I personally can't stand Oprah, but I have this feeling that whatever she does is gold. I think that if she chose, on the day before the presidential election, to run for president, she'd win. By a big margin. She'd never even have to come up with a platform because she's Oprah. Oprah could take over the world. ;)

[pjthompson]

Oh, I understand where the "glee" comes from. There really are so many causes that it's hard to get attention for. It's just...weird.

And yeah, Oprah could take over the world. ;-)

[mrngglry98.livejournal.com]

Maybe Oprah already *has* taken over the world...

Uh oh.

[pjthompson]

You haven't had the chip implanted in your brain yet or you wouldn't be speaking such blasphemy.

[nycshelly.livejournal.com]

I dunno about that article, but my annual physical since I started with my internist nearly 30 years ago has always included a full battery of blood tests, including the TSH (probably for all that time), which is how he discovered fluctuations in my thyroid well before symptoms manifested themselves. We monitored things for a while, things settled down, then symptoms started and the test was redone and I got my thyroid zapped.

I guess I'm always a bit thrown by doctors who don't routinely screen for things like that.

The hormone isn't bad, but with anything, too much of it is bad. As is, too little of it, which is my current situation. My overactive thyroid got zapped but good.

The whole culture of celebrity is a bit odd. It's good that celebrities can bring attention to things needing it, but that because as a culture, we've encouraged it.

[pjthompson]

I'm amazed that doctors don't routinely scan for it, too, but some don't. And then you run into the problem of them not interpreting the results correctly. I got nailed in that regard big time, which is why I tell who have gotten a diagnosis of thyroid problems that it's worth going to a specialist. It may cost more, but it may save you more in the long run.

I had and under-active thyroid, a nodule that was improperly treated by non-specialists, turned seriously bad and started releasing all sorts of bad chemicals into my system with all sorts of disastrous results. Once that was discovered and properly treated by a specialist, it was like someone flipped a switch and my equilibrium returned. So yeah, it can be really serious sometimes.

[nycshelly.livejournal.com]

The first off results of the TSH and the followup, non-routine thyrhoid blood test showed underactivity. Six months later, all was normal. Six months after that, at my annual physical, the TSH was off the other way, far too low, so the thryroid hormone test was done and I was hyper, so we monitored for a few months due to the fluctuation the year before that righted itself. By the time the followup test was done, I was eating everything in sight and had a twitch in my left leg. I was also mildly depressed, couldn't concentrate, and by the time I was treated, had a resting pulse of 110. Yikes. Felt like my heart was bursting out of my chest I was so jumpy.

My doctor sent to an endocrinologist who said my thyroid was enlarged and sent me for a scan. Two visits, one to swallow the iodine pill, then the next day for the scan and not moving for 90 minutes as it turned out, all while having my period. That was not a fun week. Then they (the docs at the radiology clinic) figured out the dosage, figured out how much radiation I'd need, then had my specially made pill flown in from CO. I think I paid for its plane fare given how much that little pill cost. For a few days, I was advised to not touch men and pregnant women. So, I had 3 doctors dealing with this (well, 4 because there were 2 doctors at the radiology clinic who saw me). The advice about seeing a specialist is right on.

Now I'm hypothyroid and I see the endocrinologist once or twice a year depending on how stable my dosage of synthroid happens to be. And my internist still regularly has the TSH run during my annual physical blood tests. But I can't seem to take off the ten pounds I put on after treatment but before starting on synthroid, plus the five more pounds I put on since the synthroid levels were set. And I'm not fond of being a slave to that pill or to the beta blocker I still need for my pulse because I managed to become sensitive to thyroid hormone in any form.

One thing I tell people who are depressed is to get a full physical before going the psychological route. My depression was purely physical and a lot of physical conditions can cause depression. As soon as my thyroid was zapped, my depression vanished.

[pjthompson]

One thing I tell people who are depressed is to get a full physical before going the psychological route. My depression was purely physical and a lot of physical conditions can cause depression. As soon as my thyroid was zapped, my depression vanished.

Amen to that. Mine finally went cancerous and had to be yanked out completely, so I have no choice about taking the pills, but I do hate being dependent on them. Still, once I got with the endocrinologists and stopped messing around with the jokers, he got me steady eventually. It took maybe a year and a half to get the meds really right, but I've been steady for several years now.

[nycshelly.livejournal.com]

Wow, I'm glad you're doing okay now. They're so careful in putting people on synthroid that it took 6 months to get my dosage right and for the first couple of years, I alternated daily doses, which was confusing. Now I take the same amount each day. I shudder to think how much weight I would've put on if I had needed 18 months for them to get the dose right.

[pjthompson]

I shudder to think how much weight I would've put on if I had needed 18 months for them to get the dose right.

Yeah, it wasn't a pretty picture. The same quack who messed up my chems so bad also had me on phenFen (or howevr that's spelled). I lost 85 pounds, then I...gained some back. Now I'm losing again, but it took me awhile to get back in that place.

[kmkibble75.livejournal.com]

Yeah, it's getting kind of weird. I can't even really say why people think it's necessary, or why it is, but...it's unfortunate.

[pjthompson]

Because of the weird celebrity culture we have, causes actually get more money if somebody famous comes down with a disease. More money and more attention. Christopher Reeve's injury helped spinal cord research tremendously, as did Michael J. Fox with Parkinson's. It IS one way for a celebrity to make their personal suffering more meaningful, but it's still rather odd, I think.

[sollersuk.livejournal.com]

My doctor took it very seriously when I said I was tired all the time and putting on weight. The blood test came back OK, thankfully, and his advice was, "You might consider doing less work and having more fun", which is a nice thing to hear. I'd already dropped down to a 4 day week as a 60th birthday present to myself, so this improves my case for asking to work from home - it's not the work, it's the bloody buses.

And yes, I do find that weird and extremely unsatisfactory. What can be a bit more satisfactory is when it raises general awareness to the extent that people do check out symptoms. Unfortunately, celebs being celebs, whatever the condition they are sheltered from a lot of the everyday problems of whatever condition it is so there is also a tendency to feel "oh, it's not so bad then"

[pjthompson]

Less work and more fun...what a concept! :-)

What can be a bit more satisfactory is when it raises general awareness to the extent that people do check out symptoms.

Yes, there are good side effects. That's the saving grace. And if Oprah's illness causes more people to get tested, that's a good thing. But still, it strikes me as odd.

No Glee, Just Hope

[(Anonymous)]

I truly don't wish thyroid problems on anyone, and I don't feel any glee. But I do hope that maybe this will help make more people aware. There are millions of women walking around with thyroid problems, and they're being told they're stressed, depressed, PMSing, menopausal, or that they need Prozac. Women are paying $10,000 a cycle for fertility treatments, and no one ever checked their thyroid. They're getting hysterectomies for heaving bleeding, and, yup, no one checked their thyroid. Some of the docs estimate that 40 million + Americans aren't diagnosed but have a diagnosable thyroid condition that is currently undiagnosed and untreated. Most annual physicals don not include thyroid or even just TSH, and even pregnant women don't regularly have their thyroids evaluated, even though it's a common time for problems and being hypo can hurt the baby.

Part of the problem is that Oprah herself has studiously avoided mentioning thyroid disease on her show. She's had hour-long shows dedicated to infertility, depression, weight gain/diet problems, low sex drive, PMS, problems with menopause/perimenopause, and not one of those shows ever mentioned an underactive thyroid. Dr. Phil was on Oprah and even yelled at one poor woman, in his characteristically unsympathetic style, that having a thyroid problem was "NO EXCUSE for bein' fat!" And now, her friends who wrote "The Secret" are saying that thyroid problems are just a lazy excuse, and that you can "eat anything you want" as long as you "THINK it won't make you gain weight." I'm not saying thyroid is the 100% issue with weight gain, but Dr. Phil and the "Secret" folks want to dismiss it entirely, which is ridiculous. Oprah herself is now saying she gained 20 lbs in just a few months from her thyroid condition.

There's a disconnect, it seems, between Oprah and her guests, and Oprah's reality, and I'm hoping that the current developments might breach that.

Anyway, just wanted to clarify my thinking about this.

-- Mary Shomon, thyroid.about.com

Re: No Glee, Just Hope

[pjthompson]

All very good reasons. I'll make sure I point them out in another blog. I don't disagree with the seriousness of this or the fact that the medical establishment has repeatedly dropped the ball with thyroid patients. I've been the recipient of that inattetnion myself with serious consequences.

I think Dr. Phil and the Secret Twins are amongst the more odious toads on the planet, and perhaps Oprah needed her boat rocked a bit. I'm not suggesting you share any of these opinions—they are solely mine. Since it's my blog, I am entitled to air my opinions, although I admittedly forgot for a moment that it's also a public forum and someone else might not see things the way I do.

I'm sorry I misinterpreted your article.

Re: No Glee, Just Hope

[(Anonymous)]

Not a problem at all!! And of course you have every right to share your thoughts any which way you want -- that's the great part of the internet! But thanks for letting me share my comments and explain the whole Oprah thing a bit more here on your blog!

I'm also glad that people -- esp. a blogging thyroid patient like you ;-) -- are talking about thyroid at all, because every post where someone shares info about thyroid helps get the word out that much more!

Take care--
Mary Shomon

[pjthompson]

I'm also glad that people -- esp. a blogging thyroid patient like you ;-) -- are talking about thyroid at all, because every post where someone shares info about thyroid helps get the word out that much more!

I don't do it often, but that's part of why I do it. It's a misunderstood disease and one that for some bizarre reason not everyone in the medical establishment takes seriously. I got seriously messed around by doctors who didn't know what they were doing and I'd like to save someone else that problem.