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Tuesday, January 31, 2012

Thyroid disorders: overcoming the myths and bad advice and getting treatment

"As your doctor, I know
much more than you do.
So why don't you just
trust me? You're
just the patient!"
Some of my family members have been bugging me to see an endocrinologist to treat my Hashimoto's Disease. I've thought about it, but honestly, am not looking forward to it. After my post on "Stupid Crap My Doctor Says," and reading this article, you might understand why.

The article, called "Understanding Thyroid Problems," is ironic - because it's written by someone who doesn't understand. As a writer, I strive to make sure I understand the topic I'm writing about and I want it to be accurate - but apparently this person doesn't. Her method of dealing with her Hashimoto's - complete with fatigue and stubborn weight gain - is to exercise more and drink more coffee.

Her headline strikes a very dismissive tone - she mentions people who "peddle" advice and it's clear she thinks well-educated thyroid advocates (whom she even quotes in the article) are not responsible enough to register an opinion. In other words, "You're not a doctor so I'm not going to trust anything you say. I'm going to ask my physician!" 

Well, that's fine - except the doctors she interviews for her article are even more dismissive. One mentioned what is basically subclinical hypothyroidism - and suspects that many patients aren't really hypothyroid at all.
"A review of the literature shows up to half of people with a TSH in the 3 to 4 range either don't have hypothyroidism at all or have only the earliest phase, where there's no clear benefit from treatment," he explains.
In other words, it's all in your head. Here, take this anxiety pill. And while you're at it, there's one for depression, too. Now go home.

Like I've said before, and like many sites do say, you are not the same as someone else. Because your TSH is higher than mine doesn't mean you will feel worse than I do. I haven't read any of the studies he's referencing, but I suspect that patients are on such a low dose that yeah, it doesn't really work. But unfortunately the patient is allowed such little autonomy in matters of their own health that we may never know what works for them because we simply won't allow them to ever reach that point.

Based on the author's information, you have to have a TSH as high as 10 to 15 before it's worth treating. (But... I thought 5.0 was the high end? What about that?) Interestingly, mine was around 2 something and my physician said it "still wasn't where he wanted it to be." Thank God I don't have a doctor who thinks I should only be treated when my TSH is exploding off the chart.

Dr. Worst-Case-Scenario goes on:
"There's no compelling evidence that medication helps patients whose TSH is in the 5.0 to 10.0 range," says Dr. Daniels, though if you have other problems, such as infertility or depression, your doctor might suggest medication. Similarly, for those who also have Hashimoto antibodies, the decision to treat may depend on other factors. If you have debilitating symptoms or develop a goiter (a protrusion of the thyroid itself), "it might make sense to try medication for a few months," says Dr. Daniels. "Occasionally symptoms improve; often they don't."
I'm not an expert, but I don't consider a TSH as high as ten "subclinical." It means you are full-blown hypo at that point, I would think, but again, it's different for everyone. I can't imagine the number of couples who have struggled needlessly with infertility because some jerk endocrinologist painted everything as a disaster and refused to treat.

If your TSH is that high, I'd suspect you're too damned tired to care about being infertile, because you're too tired to have sex in the first place. I'd also like to ask him why I felt better once starting thyroid medication when my TSH was quite low, by his standards.

When they start talking about medication options, of course synthetic hormone is mentioned first. Even though natural desiccated thyroid has been in existence for centuries, the author mentions those "natural advocates who tout" the product as if it's snake oil. And in piling one myth on top of another, the doctor says, "There's a perception (read: all in your mind) it's natural because it's animal-derived, but the potency can vary." Yeah, about that. Apparently the potency can vary in synthetic medications as well.

The author's closing blow is to be "wary of on-line advice." What, like the crap she dished up in her article? Perhaps there is a grain of truth in that, but it's probably the same for any medical problem. And unfortunately the information put out by many major advocacy groups (like The American Thyroid Association) and doctors is often laced with the same errors she claims everyone else is. Their top recommendations often include, "Your TSH is fine. You do not have a problem. Come back in six months to a year and we'll reevaluate you. Synthroid is your only option, but I'm not going to disclose that they are a major sponsor of our website."

The author admits to a family history of Hashimoto's disease, but says even if her levels "had nudged up a bit" she'd "still opt out of treatment." Not exactly sure why, but perhaps she doesn't mind - or doesn't understand - how the thyroid slowly gets destroyed over time until the damage is done and you're completely hypothyroid. Perhaps one of the great endocrinologists she interviewed recommended that she do nothing, because, after all, it probably won't work - right?

The bottom line is that people treat their doctors like they are gods. Unfortunately, some doctors think they are, too. No one - not even your physician - is perfect. When they're willing to admit it, that's great. When they're not - but instead are reluctant to try new things, accept new and different ideas, or at the very least, listen to their patients - they stand to make people a lot sicker instead of better.

In closing, I'd make the following recommendations based on my own experience:

• Read all you can. Medical journals, support and message boards, books, articles, even patient blogs that detail their experiences and frustrations. It might be eye-opening in the following ways:

1) you'll learn more about your body, and that's never a bad thing
2) You could learn about possibly new and unusual symptoms that you're experiencing
3) You'll get more support from people who've been there, rather than be told "You're just imagining it!" or  dismissing you
4) You'll learn about the disparity of information out there about other treatments, like natural desiccated thyroid, supplements and other methods
5) You might just find out certain groups and people are not always acting in your best interests
6) You'll find out there are a lot of myths, conflicting ideas and misinformation about thyroid disorders that just won't go away!
7) You'll be exposed to possibly cutting-edge studies and information that your doctor won't, which could really help your diagnosis 
8) And most importantly, you'll be a more informed patient who can weed out the good from the bad advice you might be hearing

• Get copies of all your blood work and keep them on file for comparison purposes. It's nice to know what your numbers are and where you stand. This could also include pharmacy records, so you can see what dosage you were on when and gauge how you felt at the time. 

• Keep a journal of your symptoms. Compare it with your medical records. 

• Don't be afraid to ask questions and demand answers. Your doctor works for you, not the other way around. He is not the boss of you, or your "daddy," so don't be afraid to speak up and advocate for yourself. 

• Be wary of those who say you should only take T4 meds (like Synthroid). Know and understand the intricacies and quirks of synthetic medications and they, too, have their faults. Know also that many organizations are supported heavily by the makers of Synthroid, which is a conflict of interest. 

• Conversely, be wary of anyone who says you should only take Armour Thyroid (or other natural desiccated thyroid). I'm in the middle of the road on this - even though I take Armour, it might not work as well for some as it does for others. The same goes for T4 - many people do well on synthetic medications. But many also do not, and are only taking it because it seems like the right thing to do. If you've ever taken both and have a way to compare, only then can you decide which one is right for you. Along with the point right above this, be aware of those who try to discourage you from taking Armour and why they discourage you - either because they believe in the myths or because of financial incentives from drug manufacturers. 

• If you feel that your doctor isn't adequately addressing your concerns, don't be afraid to fire him (or her) either. If at all possible, try to find someone who - while not perfect - pays attention to YOU and how you feel, rather than boss you around or dismiss your thoughts and ideas. 

• Most of all, be patient. It's not going to happen overnight, and medication changes are bound to be necessary. Take the opportunity to educate others around you; it can be a frustrating journey, and if necessary, don't be afraid to have a good cry once in awhile. Don't give up! 

More reading:
Don't worry, no good deed goes unpunished: thyroid advocate Mary Shomon ripped this article to shreds. Read it here!

Friday, January 27, 2012

How thyroid disorders can affect postpartum health and the breastfeeding relationship

When you have a baby, you're tired. Your hormones are out of whack, your periods are wonky, you might feel like crap and your hair falls out. Is it from "just being a tired mom" (said by your OB rather condescendingly) or is it because of something else?

When I was three or four months postpartum, I noticed weird stuff going on in my neck. As a side sleeper, I could no longer sleep that way without discomfort and even some pain. It was mildly uncomfortable to swallow, even though it wasn't the same as a typical sore throat pain. My neck swelled up and I thought I had some kind of virus, so I went to the doctor.

The physician's assistant thought maybe I had mono, so she ordered a blood test. It came back negative, but in the meantime she put me on antibiotics. After I took one pill, I thought, Wait a minute, mono is a virus, not bacterial. What the heck am I taking these for? I threw them out.

Another thing she told me: Stop breastfeeding for a while in case your baby gets what you have.

No way was I doing that. I knew my baby would be protected because I was nursing exclusively, and who's to say he wouldn't get it anyway?

I went at least another year before finding out why I felt half-dead most of the time, and probably another year on top of that before starting medication. I couldn't help but wonder, how many other "tired moms" go that long and then some with doctors throwing antidepressants at them, and everyone else patronizingly telling them, "Oh, you're just tired! Get more rest!"

In retrospect, I know now that I had postpartum thyroiditis, where the thyroid gland is affected by a surge of hormones and gets inflamed. In some cases it can last weeks or even months, and then go back to normal. In others, it makes you hypothyroid, and is under the umbrella of autoimmune thyroid disorders, or Hashimoto's disease.

Thyroid disorders can also make you feel depressed, on top of what you might already be feeling as a new mom who is struggling to adjust to changes or new additions in the family. In addition, another possibly huge impact on the new mother is how it can interfere with the breastfeeding relationship. I am bolding this simply because I feel that perhaps this is one component to lower breastfeeding rates, and perhaps the root of some women's difficulties with breastfeeding, that has perhaps been overlooked.

One of the signs is decreased milk volume in breastfeeding women. Considering how prevalent thyroid disorders are, it almost makes you wonder if this is one of the causes behind why some women are unsuccessful at breastfeeding and never really know why. And, according to the La Leche League, little if any research has been done on it - not only do many doctors not have a sound understanding of the mechanics of breast milk production, supply and demand, but seemingly few of those doctors truly understand thyroid disorders, either, sadly. This unknown factor in a mom's health could mean the difference between treating her condition properly or going years without knowing the true underlying cause of why she "couldn't nurse" her babies.

I posed this question of many thyroid patients recently and came up with interesting responses: I asked them if they ever had trouble breastfeeding, and if so, did they find out why? Some never had problems, others were, at one time, able to nurse very well and then suddenly production declined as they had more children. I noticed this myself: with my first, I could pump like crazy, but almost nothing with my second or third children. One said she was successfully able to nurse twins and then, in a later child, had supply issues. And some women said they tried everything - and nothing worked.

Breastmilk production is stimulated by prolactin, which is produced in the pituitary gland. Not coincidentally, the pituitary gland is also responsible for producing TSH, or thyroid stimulating hormone.

In reality, "any woman who has been pregnant can have postpartum thyroiditis," according to thyroid advocate Mary Shomon's website. There is the chance that the thyroid will return to normal in some women, but in others it can lead to a more persistent form of thyroid disorder, whether Hashimoto's or eventually full-blown hypothyroidism.

More reading:
Hashimoto's and Postpartum Thyroiditis
Thyroid problems after pregnancy: A look at postpartum thyroiditis
The impact of thyroid dysfunction on lactation - La Leche League

Thursday, January 26, 2012

Stupid crap my doctor says

I've said before that when it comes to getting my thyroid problems sorted out, my doctor's not too bad. He was totally open to me going to Armour Thyroid, hasn't said anything really objectionable and doesn't treat me like I'm crazy, which is a plus. Apparently, I'm really lucky in that department, though, because some people have an insanely hard time connecting with a doctor who knows what the hell they're doing.

"What the heck does the
thyroid gland do? Most physicians
will tell you 'it controls metabolism,'
which is what we all learned in
medical school. That statement is
basically the same as saying, 'It's
really complicated and I don't
understand it.'" - Dr. Rob Lamberts
A friend of mine is 43 and exhibits a ton of symptoms: facial swelling, celiac disease, tiredness and a bunch of other stuff. I told him to switch doctors, and he said he already had - five times. His regular physician told him, "Well, you're getting old...."

When I first went to my OB for bloodwork, I knew something was wrong but wasn't sure what. After my results came back, he simply stated, "Your antibodies are elevated." When I asked him what that meant, he said, "It just means you'll eventually have to go on medication." Thanks for elaborating!

I've mentioned several times in past posts how a friend was told to "fake it" by her doctor when she was concerned about low sex drive and her thyroid function. He also told her to stop drinking pop (even though she doesn't) and to 'get off the couch.' Why, I'd love to, if only I wasn't so tired all I wanted to do was sleep. All. day. long.

I once got into a rather heated Facebook debate with a nurse practitioner who, along with her physician husband, thinks many of the people in her practice use it as an excuse. She went on about the TSH, and eventually changed her tune and shut up when I told her you can have high antibodies, hypo symptoms and a totally normal TSH, all at the same time.

I asked others and they told me this:

Amber: "The old "eat less, move more" mantra. I've eaten 900-1200 calories a day and exercised for 10-12 hours a week for months on end, and have still, little by little, kept gaining weight."

Beth: "That none of my symptoms...PMS, depression, weight gain, insomnia, anxiety - were thyroid-related. This was the same guy who said that a TSH of 9 was within normal limits and that Armour is unreliable."

LynnSue: "'You have Hashimoto's, but we don't keep track of your antibodies because it doesn't really mean anything and there is nothing we can do about it.' I was told this by SEVERAL doctors, most of them endocrinologists....My highly esteemed endocrinologist told me that my slow, steady weight gain was "middle age" (I'm 51) and that many of her female patients have chosen to get liposuction. 'I'm telling you that off the record,' she said. She never, ever tested by B-12 in the 15 years I was with her, even though Hashi's patients are often deficient in it. When I got it tested on my own (through my GP) and showed her the deficient results, she said, 'Well, I guess that one slipped under the radar.'"

Jessica: "I had the opposite of LynnSue. 'You have crazy high antibodies and 'normal' numbers otherwise. Go see a rheumatologist. I can't help you.'"

Rebecca: "'What you had before your thyroid was removed was Grave's Disease, but now it's called Hoshimoto's.' Seriously! 'All your levels are checking out fine so its not anything to do with your endocrine system. It's something else and nothing I can help you with further."

(Note: I've heard some people speculate that endocrinologists no longer know how to deal with thyroid problems because they're all seeing diabetes cases - which is a complication from hypothyroidism, by the way....)

Lisa: "'Eat 500 calories a day and try to work out more.' Keep in mind I was already lifting weights five times a week and going bald....Two of the four morons told me to eat 500 calories. I also was an anorexic/bulimic for years who recovered with Atkins. The others just thought I was tired from being a mom. Grrr..."

Terah: "'You have Hashimoto's, your TSH is below 2. Let's wait and see what happens.'" (And in the meantime, it's totally okay for you to feel like crap... we'll just wait for you to continue to fall apart, 'k?)

Michele: "'Thyroid problem? What thyroid problem? Your TSH is fine.'"

Kira: "'Here...take this will raise your serotonin and make you feel way's not your thyroid.' Four days later, had a grand mal seizure and lost my four front teeth and developed a systemic blood poisoning from the infection that set in...Yeah, thanks, doc."

Pamela: "I was also told that my complete and total exhaustion, muscle pain, ataxia and weight gain was because I was a mom with a four-month-old...(ring a bell?) By the time my doc agreed to test me, my T3 and T4 levels were ZERO. He said he'd never seen numbers that low. This was 17 years ago. It's been a long, wild ride since then."

Lorrie: "I suffered 'tonsilitus' every year of my life until I finally found a doctor who knew the minute he saw me that I had Graves Disease (at age 43)... Then there was the cardiologist my doctor sent me to for a stress test... without even looking at my folder announced the reason I was sent to see her was because I was 'lazy.' (after two surgeries and gaining 60 pounds)

Suzie: "Me: 'Could your numbers be normal, but you still have symptoms?' Endo: 'No, that's impossible!' followed by a condescending head shake....'It's functional. Here is 7 mgs of Xanax. Also, here is Abilify, Zoloft, Paxil, Lexapro, Risperdal, Ambien, Adderall, Ritalin, etc. and an application for SSI!"

Nadia: "'People's bodies change a lot as they get older; it's normal that you're putting on weight and feeling tired - just eat less and exercise more!' At the time, I was 23, eating vegetarian and mostly raw food, working as a waitress and going to the gym 2-3 times a week!"

Yvonne: "'Your symptoms have nothing to do with you being hypothyroid; I want you to see a psychiatrist,' who consequently diagnosed me with somatization disorder (all in my head syndrome). My GP ate his words last month when he said, 'Your remarkable improvement on NDT can no longer be ignored.'" (emphasis mine)

Terah: "My first endo said, 'So you have a few symptoms. You don't need medicine for something that is going to slowly kill off your thyroid anyway.' (Hashi's) Then she went on to say since I was getting older that there was no need to have sex so the lack of sex drive was a benefit. I could not have made that one up!"

Dear Lordy be. I'm not even sure what to say about that one.

If this is your doctor's approach to treating your symptoms, run, run, far away! 

More reading:
Why an endocrinologist or thyroidologist should probably not be your thyroid doctor
The many myths of hypothyroidism - Dr. Kenneth Blanchard 
What's wrong with these doctors? 

Wednesday, January 25, 2012

I'm on thyroid meds, but why aren't they working?

Without my Synthroid and six cups
of Starbucks, I'm worthless in the
mornings! Just ignore that eye twitch.
Photo credit:
This is one question I've asked myself sometimes in the last eight months since I've been taking meds. At first, when they worked, it was like the crack high I've never experienced. I had enough energy to do ski hills, three times, hiking for hours all over the place. My poor family would be dragged along in my pursuits to do things bigger! better! faster! and as I sat, fidgety and tapping my foot, I would stand up and say, "I have to go run on the treadmill!" Where the heck did that come from?! My husband would look at me like, "Who abducted my wife and replaced her with you?"

I asked a fellow bus stop mom and Synthroid user if she felt good. She said she was tired all the time, among other things, and was surprised when I told her those were all symptoms of hypothyroidism. I'm not even sure she knew what many of the symptoms even were, so I wondered, how does she know if her meds are even working or not? She went on to tell me that she's been on the same dosage since her first child was born, like 11 years ago.

I wasn't going to give her medical advice, but it almost sounded like she needed a dosage adjustment to me. Eleven years is a long time to be on the same dose, especially if you've had a baby and are still having symptoms. Every month I get mine filled, a nice warning label appears on the bottle: "This medicine may need adjustment if you are pregnant." If you've had a baby, that can definitely throw things off.

Menopause can also mess things up, as many women blame it for symptoms like depression, low sex drive and fatigue - when, in fact, their thyroid function is low. This can explain why some women still exhibit symptoms even while on hormone replacement therapy.

It's also important to remember that even though your TSH might be "within normal limits," it might be high for you. You are not the same person as someone else, and lowering it even a few points could make a world of difference. Some references say especially women should have "at least a TSH" done every year once they reach 35, but in my opinion I'd want more than just that: because the damage could already be occurring. If you have Hashimoto's like I do, you may benefit from treatment before your TSH even shows a real problem.

Some other things that come to mind that are possibly worth looking into if your meds aren't working:

• You haven't been on them long enough. For me, when they were really working, it worked well. But honestly, I sometimes wonder if I didn't give it enough time to really do its thing. On one hand, it's been eight months, but on the other, it sometimes takes quite a while before finding the right dose that works for you. I can't say I feel bad all the time, and can't honestly expect to feel perfect every single day. One thing I remember reading in Dr. Mark Starr's book - for some people, it can take awhile for everything to "unclog" once they start on meds. I think it's very easy to give up too easily because it is often a pain in the ass to reach that perfect point, and when you're as motivated as a snail to begin with, it's bad enough as is it.

• You're on generic instead of name brand. For some people, there is a difference, despite what your doctor thinks. Your thyroid is like a computer: if you're running software for a PC but you have a Mac, it ain't gonna work very well, or for too long. It might be okay for a little while, and then suddenly things start to go haywire. But, it's different for everyone.

• If you're on Armour, know that the product was reformulated several years ago. Because they changed the type of fillers they use to bind the pill, some people cannot digest it and break it down to effectively use the medication. Some people have tried it sublingually, some break it in half, some crush it - it might take some tinkering if you suspect this problem, so don't give up. Some people also split their pills in half and take several doses throughout the day with great success.

• You aren't taking it correctly. This one seems like a no-brainer, but maybe not for everyone. Although some people report no problems, most medical literature and pharmaceutical inserts will tell you to avoid eating for an hour after taking your pill. Certain products, like anything containing calcium, should not be taken for up to four hours after taking it. Some people, including myself, take it in the early morning hours (since we're already awake to go pee or tuck a kid back into bed). You should also avoid anything containing estrogen or iron when you take your thyroid medicine for maximum absorption.

• You're on the same dose for too long. I've noticed that if I needed a raise in dose, it was going to happen within about 2-3 weeks after the initial dosage. On a couple occasions if I waited too long to raise, it was like I experienced all the old symptoms and then some, like I was crashing big-time.

• Janie Alexander at the Stop the Thyroid Madness website says patients are often afraid to raise their dose - and I can understand why, to some extent. Splitting a pill in half might not hurt just to try it - but don't do too much. I'm not giving medical advise, but I've often doubled my dose with good results, depending on the dose I started with (for instance, I'd rather double a 30 mg dose than a 60 mg one!). It's important to increase gradually and not by too much, like when I wanted to go from 60 to 75 mg of Armour and thought I was going to die. I guess I know now where my personal threshold is...

• To complicate things even more, Janie suggests that even though you are experiencing hyper- symptoms, it could be more from things like adrenal fatigue. Cutting and pasting because it just makes much more sense when she says it:
"Yes, a doctor can guide you to  go too high with desiccated thyroid and you’ll have hyper symptoms. You would then want to decrease your amount. But even more common is having hyper-like symptoms (anxiety, shakiness, fast heart rate, etc), especially on doses lower than 3 grains, because of underlying low-functioning adrenals (i.e. not enough cortisol), or even a low Ferritin or iron—-each and/or both of which can be quite common in hypothyroid patients. So it can be wise to get both your iron and cortisol levels checked."
And if that wasn't complicated enough, some don't even believe that adrenal fatigue is even possible. One doctor poo-poohs it and says that accepting a diagnosis from an unqualified practitioner can make you sicker - while the "real diagnosis" of depression and fibromyalgia - go untreated. (By the way, depression is a common symptom of hypothyroidism, and many believe there is a connection between fibromyalgia and low thyroid function. Just thought I'd throw that in.)

• You would do better on Armour Thyroid. If T4 only meds don't work for you anymore, perhaps you need to switch to something else and see how it works.

More reading:
Mistakes patients (and their doctors) make - Stop the Thyroid Madness 
Adrenal fatigue/exhaustion

Tuesday, January 24, 2012

You've lost that lovin' feeling

If you've ever opened a spam email, seen an infomercial or traveled down the vitamin aisle at the pharmacy, you have probably seen the (often ridiculous) products marketed to men to the improve their sex drive. The commercials for Levitra and similar products are vomit-inducing for sure, and kind of make me laugh - what about all those women with low sex drive? Who are these women that men are trying to please by rushing out to order libido enhancers?

The claims they make are laughable - and I can't believe reputable pharmacies are actually selling this crap. But what I want to know is, where are the female enhancement pills? Why does no one seem to care about that?

According to one 2008 study, upwards of 40 percent of women report having a low sex drive. While the Levitra ads are geared towards people reaching retirement age, studies indicate young women have this problem, too. Many think that use of antidepressants and birth control can be to blame - Paxil, for one, is a known killer of the sex drive. Apparently, many of the women in the study also reported being depressed - and noticed a further decrease in libido when using antidepressants.

Guess what? Depression and low sex drive can also be signs of a thyroid disorder! Of course, the article doesn't mention the word "thyroid" as a cause anywhere. Many popular medical sites often do not include low sex drive as a symptom; in fact, one site suggested it was only a problem in men.

Women are often embarrassed to talk about sexual problems with their doctors, and many times it's blamed on lifestyle: busy, working full time, raising children, "you're tired!" Nah, I don't think so. While it can certainly contribute to that, it often doesn't get to the root of the problem. And if your care provider doesn't know it's a symptom, they're more likely to brush you off.

Awhile back I blogged about a friend who's doctor insisted she "stop drinking too much soda pop" in response to her noticeable weight gain, even though she doesn't drink pop, she said. As far as her excruciatingly low sex drive, her doctor's advice was to "fake it." How horrifying.

So, we market millions of dollars worth of junk medicine to men in an attempt to restore their "function," but women get relegated to the back burner - perhaps even ignored and brushed off - when it comes to their sexual problems. 'Just blame it on kids!'

Ladies, just another reason to get your thyroid tested. And men, skip the worthless enhancement pills and get yours checked, too!

More reading:
Low Sex Drive and Thyroid Disease
Sex Drive 101 for Thyroid Patients
Low sex drive in women

Monday, January 23, 2012

Synthroid vs. Armour: Squashing the competition

When it comes to treating thyroid problems, your physician will probably prescribe one drug: synthetic thyroid hormone, either Synthroid or a generic equivalent. Generic levothyroxine is one of the most popularly prescribed drugs in the United States. And in 2010, profits of Synthroid rose over 18 percent and made Abbott Pharmaceuticals $123 million dollars richer. 

There are alternatives to Synthroid, but you'd never know it based on some of the information from doctors and major thyroid advocacy websites. In some of the research I've done on thyroid treatment natural desiccated thyroid (NDT) isn't even mentioned at all.

Many doctors tell their patients it's "outdated," old-fashioned or "isn't even on the market anymore," and some outright refuse to prescribe it for their patients. Some patients give it a bad rap because it caused problems for them, when really it's probably the prescribing physician who is not dosing them properly. Basically, many thyroid groups and physicians are detracting patients from using NDT and funneling them towards Synthroid - perhaps because of financial incentives, pervasive myths and incorrect information about the product.

One theory is because desiccated thyroid comes from an animal source, it cannot be patented. While cost can vary, Armour Thyroid is roughly half the cost I used to pay for Synthroid, and Armour has both T3 and T4 in it - whereas synthetic is T4 only. (Each hormone level is essential in the thyroid's production, basically, to give your body energy, but the mainstay of thyroid treatment these days only includes one hormone rather than a little of each.) 

There are synthetic T3 meds like Cytomel, but guess what that means: you have to have two prescriptions filled, instead of just one with natural desiccated thyroid. More prescriptions to fill means you spend more money. Name-brand Cytomel runs around $40 per 30-day prescription on, and generic is about $30 for a 30-day supply. Add that to a month's worth of Synthroid and two prescription T3-T4 meds will cost around $70 a month versus $14.99 for Armour (depending on the dose, of course).

Before the advent of blood tests that were supposed to be the magic answer to every problem, doctors paid more attention to symptoms. Before synthetic versions were introduced to the market, thyroid patients were treated with natural desiccated thyroid and many did very well. Some adjustments were accounted for, because every patient was different. Many criticize it as being "unregulated," although I'm sure science has improved since then, but natural thyroid is a prescription medication and therefore has to go through the same regulatory process as any other drug. 

While some people do wonderfully on Synthroid, not all do - even though many medical professionals tell them it's their only option. Not only that, but many people believe - and know to be true, based on personal experience - that there is wide variation in effectiveness between brands of synthetic hormone, as well as between name-brand and generic. As a pharmacy technician, the pharmacist told me this when filling prescriptions for patients, and I still hear these same stories from thyroid patients all over the web. When I got my prescription filled for the first time, the pharmacist herself reiterated the same thing: that many (many!) patients believe name-brand to be superior, and it's not just psychological as some would have us to believe. 

Not long ago generic levothyroxine came under fire because its strength was not as potent as it should be. The medication was recalled and brought to light problems people were having with a return to symptoms while being medicated. As far as synthetic versus name-brand, I've heard that the FDA considers the potency of synthetic hormones to be between "90 to 110 percent," which can mean a huge difference for some people. But, because it's sanctioned by the FDA and considered "true," drugs like Armor are considered poorly regulated and should be avoided. Gee, I wonder why they'd say that? It seems that the synthetic hormone drugs have the same problems that doctors are criticizing Armour for. 

Some websites wage an all-out attack on natural desiccated thyroid and label it "do not use" because it's
  • not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available.
Seriously? Tell that to all the patients who are doing well on natural thyroid medications! Curiously, the same website - "Worst Pills, Best Pills" - mentions a lawsuit brought to the manufacturers of Synthroid because they suppressed information that supposedly proved they were wrongly influencing patients to believe their medication was superior to generics, even though "scientific" evidence had shown it was the same. While many people complain of a return to symptoms if their medication was switched, medical professionals often pass this off as "psychological." (So that irregular bleeding that my neighbor complained of when her insurance company switched her meds without asking was all in her mind, right?)

The site goes on to say that it should not be taken except by those who have found successful results from it "for years" - meaning, they want a whole new generation of thyroid sufferers to be dependent on crappy, subpar medication and not realize that many of their symptoms still prevail and are not normal. Perhaps the most frustrating problem is the medical community's tendency to "fix it and forget it" when it comes to thyroid problems, as if one dosage is going to solve everything. In reality, for many people it's a complicated, often tedious process that is well worth it if you can find relief. tries very hard to completely discredit Armour Thyroid and the doctors who prescribe it by telling you to be "wary" of anyone who dispenses it. Funny, but I bet there are lots of people who have been totally let down by synthetic hormones who would love to find a competent doctor to prescribe them desiccated thyroid. Again, all those people who manage to do well on it must be crazy. They try to paint a dismal picture about the effectiveness and potency of Armour, while synthetic hormones have had exactly the same problems.

(Ironically, I googled the guy's name who runs Quackwatch and found that he was misrepresenting himself as a licensed psychiatrist during court proceedings he was asked to participate in as an "expert." He also apparently has ties to the FDA, which explains his distrust of physicians who will prescribe Armour.)

Depending on the nature of your remaining symptoms - say, depression is one of them - it's often perceived that you're "fine" because your TSH is "normal" and you're taking meds. So let's treat your depression. Or any of the other slew of problems you have that are unknowingly caused by your thyroid and the crappy management of it. That will require a few more scripts, some of which are astronomically expensive. High blood pressure and cholesterol levels? Hey, there's a drug for those. Instead of taking one thyroid medication to address the root cause, let's put you on a number of meds that address each symptom, until your medicine cabinet looks like a mini pharmacy. 

When you consider how pervasive hypothyroidism is, and yet how under-treated (or improperly treated) it is, it makes you wonder. It seems like more of a scam to get you to spend lots of money on unnecessary prescriptions. More and more people are feeling lied to, like our doctors want - and expect - us to completely, blindly trust them and just suffer the consequences when they are wrong. Considering there are other treatments out there, they should let that decision ultimately be made by the patient - and counsel you accordingly - instead of distort or hide information. 

Wednesday, January 18, 2012

"It's all in your head!"

Last night I was talking with friends about the controversial diagnosis of "mass hysteria" going on at a local high school. It's been all over the news, and even though I don't watch or read our local news, I've read strange reports online about the students who are exhibiting Tourette's-like symptoms.

Of course, one woman was quick to say she basically thought they were all making it up. I don't know where she got her information from, but she alluded that of the ones who stayed out of the spotlight and sought treatment, they recovered. The ones who were on the news and in the media, though, didn't. And apparently the alleged victims did not all receive Gardasil injections, and are not all girls (it includes one boy and an adult female, supposedly).

One article, though, contradicts what this woman is saying: officials do not believe the students involved are making up their symptoms. However, the neurologist this lady apparently spoke to does. What does that tell you?

Sometimes when it comes to finding
out what's wrong with you,
you have to think outside the box. 
If all those details are so skewed, it makes me continue to lose faith in the media. I mean, do they ever get the story right? And if the officials involved think the students are telling the truth, it also makes me lose more faith in the doctors. It seems like whenever they can't find the solution to something, they blame the patient: "It's all in your head."

The medical field's love of medicating doesn't help. As I've found in my research on thyroid diseases, and in my own personal experience, many people get a cocktail of drugs for each symptom - fatigue, depression, memory loss, etc. - and their real problem gets untreated and ignored. Could this be the case at this school? Who really knows.

I've been going through my own struggles lately that make me sympathize with these students. Long story short, since November I've been having weird feelings - vague at times, hard to describe but definitely there - in my head that I can't explain. Not quite a headache, but a pressure sensation that comes and goes. I know in the end probably the only thing to do is get an MRI, but I dread asking a neurologist about this: because he will likely tell me I'm nuts. I wonder, "Brain tumor? Middle ear? What the heck?" Considering I have Hashimoto's Disease, it could be linked to that: a "rare" neurological condition called Hashimoto's encephalopathy, which in some cases can actually mimic Alzheimer's and Parkinson's. In many people with it, they were all misdiagnosed with Alzheimer's, Parkinson's and even a variant of Mad Cow Disease (Crutzfeld-Jacob Disease), when really they all had Hashimoto's encephalopathy, which usually responds well to steroid treatment.

I think of people who are on tons of medications and yet still doing badly. One woman in particular comes to mind - a woman from my church who was morbidly obese and in very poor health. Looking back I bet a lot of her weight was contributed to fluid retention, and doctors eventually didn't know what was wrong with her - and she died.

The thing that further complicates a disease like this is that many of those symptoms - swelling, memory loss, tremors, weight gain, high cholesterol, and diabetes - can all be complications of long-term, untreated hypothyroidism. Not only that, but they strongly suspect that many people with suspected Hashimoto's encephalopathy are actually undiagnosed because doctors don't know how to treat it - and often ignore Hashimoto's Disease. Despite access to several blood tests, MRI technology and new research that suggests not only could Hashi's patients benefit from treatment, but that a simple TSH will not adequately diagnose them - doctors continue to ignore the evidence and wait for these people to slowly wither on the vine, which is disgusting. In the age of internet diagnostics (which many doctors heavily criticize and roll their eyes at), it's imperative for people to find answers and support from others, which is vital - while it's a double-edged sword of anxiety wondering whether you're actually right or not, it might be more information than your doctor is willing to give you.

It's easy to lose faith in a system that, at least in this case, often sticks to outdated, false logic in diagnosing, doesn't always listen to the patient, and treats the patient like they're working for you, instead of the other way around. The relationship between the pharmaceutical industry, your doctor and your insurance company is a complex hamster wheel that's often driven by one thing: money. "Big Pharma" airs their commercials on television and in magazines, convincing you that whatever you have is worthy of being treated. Maybe it is, maybe not. You visit your doctor to find out more. Or, you really do have something - but your doctor doesn't know how to treat it except to push more pills, which are conveniently provided by the drug manufacturer. Your insurance company might decide they want you to use something different, cheaper, perhaps - that might not have worked for you in the past, but because they're footing the bill they will insist you take it even though you and your doctor want to use something else. Or your doctor might suggest a new, better, faster (and more expensive) pill that does the same thing as the old, cheap one - simply because a drug rep told them it's the latest, greatest way to treat XYZ Disease.

They don't want you to know - or don't know themselves - that untreated conditions like thyroid diseases, for one, can cause the same symptoms they're treating ineffectively. Or that vitamin and mineral deficiencies can also mimic some of the symptoms you're having, for a fraction of the cost. If you knew all that, and approached it with the skepticism that you probably should, then your medicine cabinet wouldn't look like a mini pharmacy, and you wouldn't be filling their pockets nearly as full.

Food for thought:
Some of the most prescribed medications for 2011 include statins and cholesterol-lowering drugs. It's no secret that untreated (or under treated) hypothyroidism can cause high cholesterol, even among patients who follow a good diet and get reasonable exercise.

Other commonly prescribed drugs include antihypertensives, diabetic medications, antidepressants, migraine medications, and drugs to treat memory loss. Not coincidentally, hypothyroidism can lead to diabetes and high blood pressure, and among the symptoms are poor cognitive function ("brain fog"), migraines and headaches, and depression.

Low vitamin levels can also be a culprit. With vitamin and mineral enriched foods so readily available, you'd think that these deficiencies  wouldn't be as common as they are. However, a number of factors - heavy alcohol use, poor diet and digestive disorders can affect how you absorb nutrients. It's also been speculated that use of chemicals and preservatives in our food can block nutrient absorption (or cause a number of health problems, at the very least) despite all the "good stuff" they add to it to make us healthier. (Said tongue in cheek, of course)

While not absolute, I've listed symptoms in the table that tend to be commonly treated with prescription drugs (which can include anxiety meds, antidepressants, anticonvulsants, pain relievers and NSAIDs, birth control pills, and GI drugs). And while these are common deficiencies - especially among women - I've found in my experience that you can't always expect your doctor to automatically test you for it.

More reading:
How to eat right to overcome vitamin deficiencies 
Are vitamin D deficiency and hypothyroidism related?
Have you tested your B12? It's a deficiency thyroid patients need to catch. 

Monday, January 16, 2012

The Deranged Housewife.... crafts!

Call it a beginning of the year inspiration, maybe the coffee's kicking in.... but I've been debating on what to do for months with the craft blog I (don't) maintain. Yes, there is another.... said in my best Darth Vader voice. I have a craft blog, and for the longest time I've been wondering what to do with it.

I haven't maintained it in over a year, but it's obvious someone's watching/reading (really?!). One of my photos got lots of hits, which means crafty people like me are searching the net for ideas and perhaps got something out of my blog. Wonders never cease! So perhaps that was the impetus for me finally getting off my butt and doing something about it, by announcing it here. Just so you know I do more than eat, sleep, dream, write, breathe and talk birth and all things pregnancy-related.

I've been an (mostly) avid sewer since I was a kid, and have periods where I wax and wane when it comes to crafting in my Woman Cave. But hopefully maintaining this blog will help me to be more motivated to share with others who might be interested. I hope you enjoy what you see! And I hope I can remember to post more often!

Click here: Craftiest Mom on the Block

Saturday, January 14, 2012

On birth suites and breastfeeding: what a busy week!

I've been slacking - I'm supposed to be writing posts about thyroid awareness, but considering the busy week the entertainment industry's been having, I couldn't help but get distracted!

Beyonce's Birth Suite
First, Beyonce had her baby. Woo. I know, I'm like the 400th person to write a blog post about it, and really, it doesn't matter to me whether she had a natural birth or a cesarean. Well, in some ways it matters, yes - but not in the way some people think it does. Without rehashing too much of what everyone else has said, I do think how a woman gives birth matters: in the sense that surgical births are completely downplayed and approached with almost a blasé attitude, to the point where vaginal births - normal ones, anyway - are almost considered "old-fashioned." If she got the birth she wanted, then great - either way. When the entire world thought she had a cesarean at 37 weeks for breech, though, I wondered aloud, "What if this is the best information she had at the time? Many of us, including myself, have been there."

Photo: TMZ
Anyway, once photos of her birth suite were leaked, it got me thinking: why does someone have to be of "celebrity" or important status to have a comfortable, homey-looking place like this? Why do the rest of us get relegated to a double room with a complaining, loud roommate and plastic furniture?

I thought back to my own births. I gave birth to three children in two hospitals. My first was a cesarean, I was ill-informed, scared, and alone. My husband wasn't allowed to stay overnight with me, despite the fact there was a very empty bed next to mine the entire time I was there. Nurses ignored my repeated requests for pain medication, despite the obvious fact that something was wrong, and it was just a miserable experience overall. When my baby was born, he was quickly shown to me and then taken out in the hallway to be weighed and measured - which my husband witnessed - as I lay on the operating table, hearing his first cries. I thought to myself, I've just given birth, but this is so freaking surreal. I want to hold my child. When my husband cried tears of joy, they actually asked him if he was going to be okay, like something was wrong with him. Seriously?!

When it was time to get up and move around for the first time, I was in such pain I felt like my body was being seared in half. The nurse was unsympathetic. They actually told me to go get my own breakfast. I was confused, half-drugged with drugs that only half-worked, wondering where I was supposed to go to get it. Someone felt sorry for me and brought me a turkey sandwich. I thought this was odd, considering when I had my VBAC two years later (the birth I could have done cartwheels after) they brought me all my meals. What? 

For many women, just to have an unmedicated birth, they have to practically fight tooth and nail for it. Many are laughed at when they walk into the doctor's office with a birth plan. Many don't want anything all that special, except to maybe keep vaginal exams to a minimum, dim the lights and let them push in a position that feels comfortable to them, instead of to the doctor. In other words, they want their personal space respected as much as humanly possible, instead of be made to feel like a human science experiment, especially when it isn't necessary.

It's sad that we can't afford more laboring women the comforts of home within the "safe" confines of a hospital setting, since most people think hospitals are the best, safest place to give birth. Fine. Birthing centers seem to offer the best of both worlds, if you can find one. I know my city doesn't have any, that's for sure.

I think only within the last four or five years did my hospital convert their maternity rooms to private. In fact, there are those that can be reserved - as if you're a celebrity - but of course there's so few of them that they often get taken first. Birthing tubs and jacuzzis? Only four, available first-come, first-serve. I was denied access to them with my second birth because I was having a VBAC. Whatever. Apparently waterproof dopplers hadn't yet been invented in 2006. *eyeroll*

(Although they do mention CPMs, how they can lower infection and cesarean rates, fewer complications and healthier outcomes, based on WHO recommendations. So I'll give them that.)

Although hospitals go through expensive remodeling projects and blab endlessly about having expensive equipment to 'ensure you the best outcome,' it seems like they pour all their money into technology - which hasn't been shown to improve outcomes - and ignore some of the basics, like getting rid of that damned plastic furniture.

Seeing Beyonce's birth suite photos just reminds you of how in the Dark Ages many hospitals are when it comes to serving laboring women. And consider this - roughly only five percent are considered "Mother-baby friendly."

Sesame Street and breastfeeding in public
Like it hasn't already been done before, some think that breastfeeding should be "brought back" to The Street. I don't say that in a sarcastic tone - but mainly to say to all the haters, "It's already been done before. Twice. I don't remember hearing a lot of hoopla over it then or since, until now. One viewer remembers in retrospect:
Buffy breastfed Dakota in one episode; a former Canadian politician recently commented that "I remember seeing that and thinking about how proud she made aboriginal women because nursing is a part of our culture. During those days it was kind of a hidden thing, so to see Buffy doing it on Sesame Street was really something."
I've been embroiled in a heated, rather idiotic debate on Facebook over the last few days with some people who think it's wrong. I have repeated myself at least three or four times: "It's already been done before, twice, and no one raised a stink about it then." Someone complained, "Our tax dollars at work!" I corrected him and said, "Actually, the US government subsidizes half of the infant formula consumed in this country." No response. I don't think anyone actually bothers to read any of the comments before issuing their own thoughtful gem. What a bunch of idiots.

Some argued that that kind of thing "should be taught at home," and compared it with bodily fluids and functions (as usual) - even going so far as to say, "What next? Abortions? Conception?" I mean, come on. The reason these people don't see many women nursing in public anymore is because numbskulls like them have effectively driven women to either choose formula because they don't want to run the risk of their baby getting hungry in public, or they are currently feeding their child in a disgusting toilet stall somewhere.

And how can you teach something at home when that behavior, for whatever reason, isn't modeled at home? That's just the way it is, unfortunately. Kids are less likely to learn about something they're never going to see.

Many of the people who complained have probably never seen a woman nurse in public, or if they did, they didn't realize it. When they hear the word "breast" they immediately think "full frontal nudity," pasties and dancing around like you're a stripper.

I pointed out that, until formula started heavily being marketed to mothers, women nursing in public, tops open, was not unusual. As the formula industry moved into hospitals at an alarming rate, the sexual revolution gave way to an attitude that changed our ideas about what breasts were for, and, I think, the porn industry found new and more convenient outlets to reinforce those ideas. Before, public, open breastfeeding was normal and seen every day, and sex was not. Suddenly, those roles were reversed: sex was brought out into the spotlight, de-shamed, and breastfeeding was relegated to the back closet as old-fashioned and "dirty." Now people argue that if you're a breastfeeding mother, you should just "stay at home." But if you want to flash cleavage at all times for no reason, well - that's okay, I guess.

Where's Maria when you need her?

More reading:
You're my baby (bottled-fed version) - Sesame Street
Does breastfeeding belong on Sesame Street? - San Francisco Gate

Tuesday, January 10, 2012

Why I don't use my real name - here or on Facebook

I've toyed with the idea over the past three years of blogging to finally reveal my real identity. I was this close to doing so, perhaps in an effort for "transparency" (I hate that term) and then something happened. I think it was in the midst of Mrs. BWF's blow up over on her blog Birth Without Fear and all the trouble she was having with trolls that finally did it for me. I took a lesson from her: do not give out your real name except to those whom you really trust. We've either been in the middle of it or seen it from the sidelines, but you do have to admit - there is quite a bit of snark going on in the birth nerd world.

It's estimated that 27 percent
of users on FB are fake.
So what? 

Not that I don't trust all the wonderful people who read my blog, "like" my fan page and friend me through my anonymous account on Facebook, but you get the idea.

This morning when I logged into my Deranged Housewife FB account, I was blocked from entering, presumably because they are going through a "fake name" purge and decided I was on the list. Fine, whatever. I realize they have those policies for a reason, but it is not the paragon of security and honest social networking they'd like to think it is, and they're not really fooling anyone. It's often been said that privacy settings are hard to figure out, more complicated than they should be, and it's no secret to anyone that they purposefully try to get you to share more than most people would be comfortable with. (Just check out what they consider 'default settings' sometime and you'll see what I mean.)

I've heard people say, "I don't care, I've got nothing to hide." Perhaps. But yes, in some ways we all have something to hide: considering identity theft is a huge problem, and (from what I've heard) FB's new policies on harassment actually make it easier to harass people than hinder the process, I think many people should rethink how much they want to share. Some of us are having a hard time because of policies that immediately think you're spamming or doing something evil simply because you don't want to share what they consider relevant details (name and birthdate).

Who, really, needs to know my real birthdate? I mean, what does it really matter to the social networking world? I find it scary, considering if you did know my real name and birthdate, you could probably - just by those two kernels of information - find out where I live, and where I have lived, in the past decade. (Check out that site "Intelius," I'm sure you've seen it.) Is FB really that stupid?

Because of that brand new "ticker" feature, I can see content on fan pages that I'm not supposed to see because I don't subscribe (which is against their TOS, too, apparently). One classic example of why people use fake accounts is when they subscribe to groups - one such group is a haven for people with illness to connect and share ideas about their condition. The only problem was, because certain information can't be hidden, and thanks to that damned ticker, their problems were blasted to everyone on their friends list. They'd come back and say, "So and so said, 'I didn't know you were sick.' Or "You just use your illness as an excuse,' kind of thing," because they can read so and so's comments on that group. I responded, "Yeah, like I really want everyone to know that "XYZ Disease has killed my sex drive!" I'm sure that would go over well. Using a fake account means they can more openly share information without having to worry about "friends" listening in on the conversation. (Again, there may be super-duper complicated privacy settings to switch somewhere in the bowels of your FB account that can change all that, but who knows, really.)

I've read that upwards of 27 percent of people use fake names. Not all of them are malicious spammers; some just want to get around the 'filter' that means they can't vent their feelings, true thoughts and frustrations when grandma, Pastor So and So and perhaps a gossipy aunt are watching. And you know they are. Can't FB understand this? I have actually seen several custody disputes and family arguments unfold on FB, and it's sad and scary to think those people can't even say anything without someone jumping on the defensive. And honestly, if I shared half of the birth nerd info on my 'real' profile that I do on my "business" one, no one would comment, few would "like," and I'm sure I'd get unfriended several times over.

There is that "lists" feature (or whatever you want to call it) that separates people into groups based on your criteria - but I wonder if many people know how to use it. And if you have to go to a separate (non-FB) tutorial just to learn how to use some of their crazy complicated security features, then it means things should probably be simplified a bit. I bet many people don't even realize how much info they share on any given day and they would probably be horrified. We can tell them "Don't use it, then!" all we want, but for some, this is the primary - albeit flawed, perhaps - way they contact friends, relatives and business contacts. (When an older relative asks me "Should I get on Facebook?" I often bluntly tell them, "No - you'll never be able to figure out their privacy settings.")

As for my personal account, I've taken myself out of Google search, Facebook search, instant personalization (yeah, what a joke) and all the stuff I can think of and it still doesn't seem to help. On my anonymous account, I don't care who knows what I'm reading, when I'm reading it; on my private account? Heck yeah, I care, so stop sharing that info even though I've unchecked that stupid box 100 times already and it doesn't seem to change anything. Months ago, my relatives were getting fake requests from Facebook users who claimed to be friends with me, even though I had no idea who they were. How'd they know who to target? Who knows. (The only link I can make is that data between my email account and Facebook was shared. I never did find out the answer to that one.)

When it comes to the business of FB friends, it's rather perplexing. If you get too many of them, they don't like it. If they suspect that you've sent too many friend requests (even though you haven't) they don't like it. Apparently they want you to be a social butterfly, but only to a certain point.

Last night my husband and I were watching a movie about the Nazis, and at one point they mentioned how the gestapo were made up of very few people, who relied solely on the reports of common citizens to do their jobs. Well, it's kind of the same thing at FB: they have, apparently, very few employees worldwide as compared to the number of users, and depend on others to report every seemingly offensive political, religious, or breastfeeding post that just might offend someone. Sound scary? It should. If only we knew just how many people - people who are supposedly acquaintances and friends, otherwise people you trusted - "turn in" someone for content that just happened to make them mad. Yet the "F*ck Jesus/Christians/Islam" fan pages are still up and running, despite numerous complaints and reports. 

When you think about it, the age of internet use, sharing information and social networking is both revolutionary and some scary sh!t. Think for a moment about all the information you're required to submit when you sign up for an online account - whether it's with Facebook, a cooking website, even your bank - and then think of all the people out there who are trying, sometimes successfully, to gain access to that data. There have been security breaches at bank companies (my credit card number was compromised in just such a breach just a few months ago), and FB has admitted to losses of data in recent months and years because of hackers. And they get mad because there are some details you'd rather keep private, even though you can easily prove you mean no ill will?

If you're spamming people with bogus friend requests, porn pictures or other stupid products, it's going to show up on someone's wall. It will be obvious. But if you've never received a complaint from anyone, and have the public wall to prove that the links you share are anything but spam, then honestly I don't know why they get their shorts in such a bunch. They want to maintain credibility, says their CEO, because if it were loaded with fake accounts then "no one would take them seriously." Seriously?! I think it's way too late for that.

In the meantime, I'm not sure what I plan to do. I have considered trying to reactive my blogging profile, gather any pertinent information I need and close it, using FB under my fan page. I hesitate to send personal information to verify my name (although FB encourages you to blot out any other personal details and promises (pinky swear!) that they will immediately shred all details as soon as the information has been verified. I hate hate hate to lose the wonderful artwork I've posted, and all the friends I've made, if they don't get the memo, will go up in smoke. I really want you all to know how important you are to me: the wonderful connections we've made, conversations shared and ideas exchanged has been more fulfilling than you'll ever know! Many of you interact with me on a regular basis and have almost become friends (in more than a FB sense, I guess) and I would be terribly upset if those connections were broken forever.

Stay tuned and please, keep in touch!

More reading:
Why the number of people using fake names on Facebook is increasing (or something) - I don't know who wrote this article, but a lot of their assumptions are totally stupid.
Real users caught in Facebook fake name purge - God forbid your mother gives you a name like 'Anakin' because no one at Facebook will really believe you.
Facebook privacy settings are too complicated
Facebook Privacy: a bewildering tangle of options - NY Times

Saturday, January 7, 2012

Testing your thyroid: why you can't always trust the TSH

For years, my wonderful gastroenterologist was testing my thyroid (or so I thought) and the results were always "normal!" I thought nothing of it until last winter, when I became concerned that I felt crummy more often than not. Things I used to love doing now seemed like a huge chore, and housework and laundry felt like the most unsurmountable tasks ever.

My mom kept asking me, "Have you had your thyroid checked?" I insisted that yes, it's been checked, and yes, it's normal. She told me how unreliable the TSH can often be for some people, and I dismissed it as more of her "woo" medicine. Until I started making a mental note of how I felt and decided to look into it. What a shocker I was in for.

Many of the symptoms I was experiencing showed up on lists all over the internet, including an explanation of why the often-hailed TSH can sometimes leave many people under treated or even undiagnosed. I learned to be wary of doctors who told me that the TSH was the 'best way' to determine if you had a thyroid problem.

The TSH is kind of like a complex math problem: it's one component of the equation, but without the other numbers, it might not make much sense. It could look okay on its own, but not really be complete. By only looking at the TSH, it is a very misleading piece of the puzzle, when in fact there's much more that needs to be considered before solving the problem.

Photo credit:
Before the TSH blood test was invented in the 1970s, doctors often paid attention to the symptoms a patient was experiencing. While not always a perfect science, I think it also reflected how more patient-centered the medical profession used to be; now with the advent of more tests and drugs to treat everything, we've definitely gone in the opposite direction. The TSH test was developed with a pool of approximately 200 volunteers (that's it?!) to test for 'normal' ranges of thyroid function, and has been used as a guideline ever since. The problem is, not everyone is the same - some people can feel relatively great with a higher TSH than others, and some feel like crap when their TSH is in the normal range. To confuse you even further, even though there are clear guidelines established, different labs use different "normal ranges."

Some thyroid advocates argue that since hypothyroidism is so prevalent, the volunteers themselves were not really 'normal' and our guidelines are false. As our medical community moved away from a more individualized approach to medicine and pharmaceuticals became more widely available, doctors treated blood tests as all-encompassing methods to diagnose patients, which has backfired for many who fall within gray areas of the spectrum.

Just among the friends that I've talked to, I know that my neighbor is on medication (a higher dose than I am, even) and yet she said she had no symptoms. Without trying to pry, I concluded that her TSH must have been high and that her doctor was simply doing routine blood work (wow!). Someone else I know said that her TSH "was at the high end of normal" and her doctor didn't think she needed medication just yet, even though she is the most miserably tired-looking person I think I've ever met. I tried to explain it to her gently, but of course since I'm not a doctor my opinion is invalid. She is definitely someone I think who could benefit from treatment, but I guess she'll just have to wait until her TSH explodes off the charts before she gets it.

Normal reference ranges for TSH function have been changed within the last few years, and are from 0.3-3.0. Before that, 0.5-5.0 were considered "normal." And still, I read of physicians who refuse to treat someone with a TSH hovering at 5.0, acting as if everything is all in the patient's head. In comments read around the web, one patient said her doctor routinely doesn't treat you until your TSH is above 10. Time to find a new doctor!

One patient tells her story about having trouble reaching her normal weight (that she had maintained for years) and asked her doctor about the possibility of a thyroid problem.
I scheduled an appointment with my doctor. I explained why I thought I may be having thyroid problems. He just laughed at me, when I suggested I might be hypothyroid. I even took my documented temperature readings, plus hypothyroid symptoms with me, but he discounted them all. He said temperature readings to test for hypothyroidism dated back to the 1920's. He intimated that since at 130lbs I wasn't "fat" by medical standards, I therefore couldn't possibly have a problem with my thyroid. I still insisted on blood tests to check TSH (thyroid stimulating hormone) levels. This test came back showing a TSH level of 6.7, and in Canada, the reference range of 0.5 - 4.5 means, "No Problem", 4.5 - 10 means "Euthryoid - perhaps there may be a problem developing" and > 10 means "Possibly we had better treat the patient." Now this is where the issue starts getting murky. You see, the American Endocrinology Association and the British Medical Journal have all (for years) been saying that these reference ranges are incorrect, that since thyroid problems are actually extremely common (especially in women), that these numbers include large numbers of people with underlying thyroid problems - thus the numbers are skewed and actually anything > 2 (some say 2.5) should be treated as "suspect".
So, anyhow, despite my many symptoms such as dry skin, thinning hair, memory problems, low temperature, emotional spells, low energy at times, and now a TSH of 6.72 (obviously greater than the new TSH reference ranges) my doctor was unimpressed and wrote "Euthryoid" on my form and sent me packing.
This attitude prevails, even though TSH guidelines have been lowered in an attempt to diagnose more missed patients who fall through the cracks.

If your TSH is within normal limits, they will often ignore your symptoms. If it's high, it often means the majority of the damage to your thyroid has already been done. It doesn't mean it's too late to treat it, but it often signifies that thyroid damage has slowly been occurring for years before you finally pieced two and two together and sought treatment. This is why the most common cause of hypothyroidism is Hashimoto's Disease, which is an autoimmune precursor that begins to destroy the thyroid gland first (more on this later).

If your TSH is normal, it doesn't mean that damage isn't occurring. It just means that oftentimes it's not that bad yet that it's registering on a blood test. There are other tests that can be done, including ones that examine each level of thyroid hormone and how your body is converting that hormone into energy. Also, antibody tests can be ordered (peroxidase and thyroglobulin) to determine if you have Hashimoto's. However, beware: a certain percentage of the population do have Hashi's but do not have elevated antibodies; just because you don't doesn't mean you don't have a thyroid disorder. If your doctor is reluctant to order any thyroid tests, or wants to adhere strictly to the TSH, question his position or find a new doctor who will take you more seriously.

If left untreated (or under-treated), thyroid disease can cause major complications such as heart disease, diabetes, depression, infertility and other autoimmune diseases. Unfortunately, the modern medical approach is to treat symptoms instead of the root cause, which could explain why so many Americans are being treated with expensive drugs for diabetes, depression and high cholesterol. In fact, upwards of 20 percent of people treated for depression may really have underlying hypothyroidism that is undiagnosed. There's also evidence to suggest that hypothyroidism "brain fog" can mimic symptoms of fibromyalgia Alzheimer's, which means more expensive medications to treat the symptom rather than the root cause (and true Alzheimer's can only be diagnosed with autopsy).

The bottom line: when it comes to thyroid disease, there is no "normal," it seems. Healthcare professionals are too quick to put you in a neat, tidy little box that explains - or dismisses - your symptoms entirely. This could explain why so many people say "My doctor refuses to order more blood tests," or "My doctor refuses to put me on medication" - because they're either stuck to ridiculous, often flawed guidelines or are attempting to treat something that they don't fully understand.

More reading:
Rethinking the TSH Test - Mary Shomon interviews Dr. David Derry

Tuesday, January 3, 2012

Understanding and diagnosing thyroid problems

I feel like crap all the time and I want to know why! 
Considering that there are anywhere from 20 to 27 million people with thyroid disorders in the US alone, you might wonder, Do I have this? I used to think it was mostly something that old people got - before really talking to people about it, my elderly grandma was the only one I knew who had this condition. I didn't know anything about it: where the thyroid was, what it looked like, or why we even had one. What is it good for, anyway?

The answer: just about everything! It's amazing to think that such a small part of the body could be responsible for so much - basically every system in the body is regulated by the thyroid gland, a butterfly-shaped organ located at the base of the throat. We'd like to think that when something goes wonky with a part of our bodies that we'd know about it, but that's not always the case.

For an organ so small, it does have a major job to do: it affects all the other glands of the body, which in turn regulate our other body systems. So if something is off with the thyroid gland, you can bet other things will follow sooner or later.

Since I'm no endocrinologist, and the study of the thyroid can get rather complicated, I'll try and simplify it as much as possible. In fact, even some doctors don't really have a full understanding of how it works, which can be extremely frustrating for patients. While my primary doctor is okay, at least he is open to trying other forms of medication and ordering regular blood tests. Some people complain that their doctor won't even let them order a simple blood test to check things out. Seriously?! I think it's because they're afraid of what they'll find, and even more, they won't know what to do with the information they receive.

I found one such article that sums that up pretty well:

What the heck does the thyroid gland do? Most physicians will tell you “it controls metabolism,” which is what we all learned in medical school. That statement is basically the same as saying “it’s really complicated and I don’t understand it.” - Dr. Rob Lamberts 

If you don't know much about your condition, and your doctor doesn't really know, either, then that can mean months, years, even - of feeling like crap when you don't have to.

The thyroid is responsible for our metabolism, which, by definition is "The chemical processes that occur within a living organism in order to maintain life." Sounds pretty important! In a nutshell, it affects every cell in the body and how it uses energy. It does this by absorbing iodine from our food supply to produce essential thyroid hormones.

The thyroid is controlled by the pituitary gland, which is really why when you have a TSH test (Thyroid stimulating hormone) done, it's more a determinant of how the pituitary is functioning. You can have a completely normal TSH result and yet still have symptoms, which is why some people go undiagnosed for years - but more on that later. The thyroid converts this iodine into important thyroid hormones - thyroxine (T4) and triiodothyronine (T3). In a normally functioning thyroid, the body converts the T4 (storage hormone) into T3 for energy. As a result, the body produces much less of the "business" hormone T3, because otherwise you would be hyperthyroid - when the thyroid is "sped up." This can happen either on its own or if you are being improperly treated with medications.

When thyroid levels become too low, the pituitary produces more TSH, which in turn makes the thyroid produce more hormones. As a result, someone with hypothyroidism would often - but not always - have a high TSH.

If you've felt like crap for years or are wondering if you're hypo, there is quite an extensive list of symptoms, depending on who you consult. Unfortunately, many of the lists can say completely different things, which I always found confusing and frustrating. Don't ever underestimate the power of your thyroid gland to screw things up; if in doubt, google it and see for yourself.

Symptoms can include:
• feeling cold all the time
• low energy and fatigue, wanting to sleep all the time
• hair loss, loss of outer eyebrow hair
• depression or feeling extremely unmotivated
• low sex drive (more on that later!)
• dry skin
• constipation
• swelling, especially in the face
• pain and stiffness in your joints
• heavier (or sometimes lighter) than usual periods
• infertility or repeated miscarriages
• brain fog and/or memory loss
• muscle cramps and aches
• irritability
• weight gain, even with diet and exercise
• increased cholesterol
• consistently low body temperature
• shortness of breath
• dry, brittle nails
• dizziness and headaches
• migraines
• easily upset or emotional, scares easily
• choking easily
• feeling lumps or sensations in your throat

It's important to note that in some people, symptoms creep up very gradually, and are often dismissed as something else - we often contribute many of these things to "just getting old." Well, I call BS!

I went to several websites to come up with somewhat of a comprehensive list of symptoms for this list, because many times they are very inadequate. I have also consulted my father-in-law's Physicians Desk Reference and noticed, almost amused, that according to their list you'd practically have to be dead before they'd stand up and take note. There's a difference, to them, between symptoms and "signs" - symptoms are things you complain about and only you notice going on inside you, and signs are those outward things (like near heart failure, she says sarcastically) that a doctor can see going on. For example, goiter, or enlarged neck, would be a "sign." (But who really wants to have to wait until their neck swells up like a balloon? Oh wait... been there, done that...)

Granted, everyone is different, and not everyone will experience a full range of symptoms, or even close. Some can have relatively high TSH numbers and feel great; others, like myself, can be in the "normal range" and still feel like crap. I had to laugh when I consulted the almost pathetic list at Wikipedia - which lists a set of common and uncommon symptoms. Some were indeed abnormal and rare, and others on that uncommon list were actually quite common! What the heck?

Even more annoying is when patients give the run down of complaints to physicians who don't  know what all the comprehensive symptoms even are. Apparently, yes - shortness of breath can be a symptom of hypo and not just hyperthyroidism; and yet often I was feeling like I literally needed to gasp for breath. My doctor assumed it was anxiety; I told him I was not anxious. I explained how I would literally have to stop for breath just while reading a bedtime story to my kids. How is that anxiety?

Considering how prevalent hypothyroidism is, I don't know why more doctors don't do regular panels on their patients just to prevent them from falling through the cracks. Some don't know what the full range of symptoms are and just think it's normal for them. Some don't know their family history, some don't understand how it can affect them and what it means for their diagnosis. While it can affect men as well, it is more commonly inherited from mother to daughter.

It's important to not only understand the basics of how your thyroid works and what it should be doing, but take a proactive role in finding a physician who will take your complaints seriously. If possible, it's very helpful to know your family history, know your treatment options and know your rights as a patient so you can feel your best.