When the media totally gets it wrong

When the media starts talking about a topic you are acutely aware of or one that's personal to you, you are more aware of when they get it wrong. In my case, birth advocacy and thyroid disease awareness are two subjects that are close to my heart and something I know a lot about.

So it's utterly depressing and maddening when you come across an article that is just so bad and misleading that you want to scream at the top of your lungs.

When the news does a terrible job covering a topic you're
intimately familiar with, it makes you wonder how
they handle all the other stuff.
Photo credit: jayofboy/freeimages

This one - The Daily Mail's "Australian woman gives herself a Cesarean section" - is pretty horrendous. You immediately conjure up images of serious peril; something has gone horribly wrong and she's in dire straits with no sign of help anywhere, right? Wrong!

Apparently, this is an article about a maternal-assisted cesarean (definitely not the same as performing the surgery on yourself, as the Mail implies), something that is verrrrrry slowwwwwwly catching on in the birth community. By slowly I mean probably at a snail's pace, because we still don't hear very much about it. The woman, disappointed over the fact that she could not have a VBAC with the twins she was carrying, decided that she wanted more of an active role in the birth and presented her case to her OB, who - not surprisingly - flatly refused. Apparently after he did more research, (gasp!) he changed his mind. (double gasp!)

"'(The doctor) was quite willing once he realized the risk of infection wasn't as high as he perhaps first thought,' Mrs. Wolffe said.'"

Amazing. An OB that listened the patient, while still yielding to necessary medical intervention, and they both had a positive outcome. I am speechless.

However, that's not the problem. Further down in the article, a video accompanies it captioned 'Live Cesarean: graphic 2013 video of birth broadcast on Twitter." Okay… except that's not the Australian woman's birth they're showing. In fact, it's from a hospital in Texas, something the Mail doesn't exactly explain beforehand and most people from their UK readership didn't pick up on (including, apparently, all the American accents in the room).

How this had anything to do with this woman's birth is beyond me, but it sure makes for great fodder for readers to totally attack her - everything from her looks, to her birthing practices, to a "DIY birth" (which it obviously was not). Some even criticized the weight of the babies, for whatever reason. At any rate, it did nothing to advocate for alternative choices in birth and only made the mother look like a total freak (if you trust the people commenting).

Thanks for totally misleading your readership, Daily Mail. Not that that's anything new, apparently…

Dr. Samadi's commentary on Fox left a lot to be desired,
namely the idea that there is more than one way of
treating thyroid disease - not to mention that many
doctors are neither well-versed in or willing to treat more
complicated cases.

January is Thyroid (Un)Awareness Month
Like bajillions of other Americans, I have thyroid disease, and it's a topic I've written about a lot. I've also basically forced myself to get educated on it in order to understand what was happening to my body, because I found that my doctors were not always that knowledgable. Apparently these guys are no exception.

Dr. David Samadi is apparently one of Fox News' resident doctor experts, which in and of itself isn't bad - except he's a urologist commenting on thyroid disease. Since the two aren't obviously related, I was puzzled why he was weighing in on the subject. While I realize they have time constraints on the broadcast, they really do reflect a serious problem with misinformation and an overall lack of education on the subject, which can often leave patients untreated or improperly medicated.

While I do give him points for mentioning more than just the TSH, it's important to know what to do with the results. Just this week I heard a patient say how enthusiastic their doctor was about ordering tests, even though she'd admitted there were some she had never heard of, but then also admitted she had no idea what to do with the results of the bloodwork. That doesn't help you very much as a patient, but at least she was being honest.

Another expert, NYU Medical School internist Dr. Mark Siegel, gives a very watered-down, extremely over-simplified and perhaps even dismissive explanation. His commentary also left a lot to be desired, and outraged a number of people in the comments who have firsthand experience with the disease.

"Here's the good news…[this] is so treatable… if you have low thyroid, I can give you something called levothyroxine. [It] just replaces the thyroid and you're back to normal. It's a great, great medication." 

Yes. Well. If you do well on levo, that's your business. Not everyone does, and while some prefer the name brand equivalent, Synthroid, some would rather choose neither and use Armour Thyroid instead - but you usually won't catch a single mainstream physician mentioning that in an article about hypothyroidism. Whether it's intentional or not, Synthroid is usually the only drug mentioned, which misleads patients into thinking Armour has been pulled from the market or simply doesn't exist anymore.

And wouldn't it be great if it were "just" that easy! Just pop a pill and you'll feel like a million bucks in no time. For some, it works great and they're on their way, but for others, it's a constant battle to get a physician to treat them adequately and even take them seriously.

When you catch them screwing up on a topic you're familiar with, it almost makes you wonder what they're telling you about all the other stuff.

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 Prozac..it will raise your serotonin and make you feel way better...it'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? 

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: freeretroclipart.com

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

"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. 

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: thevreelandclinic.wordpress.com

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

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.