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Tuesday, May 24, 2011

I want my life back!

Since I've decided I definitely have some kind of whacked thyroid problem, it's been amazingly liberating to talk about it with others. It's also interesting to hear who else is dealing with it, too. It's like the blinders are off; the curtain of doom has been lifted.

I was talking with my daughter's preschool teacher about it - and while we chatted, at least three other people overheard us and were sharing their stories, too. Jan - who is my age - asked me, "Why do you think my hair is so gray?" I didn't know. "Because of hypothyroidism." She said most people thought she was just going gray prematurely like her mother, but she isn't even 40 yet and is mostly gray now. She told me a heartbreaking story of how her doctor has basically been ignoring her symptoms.

"He told me to stop drinking pop and get off the couch," she said. Jan, who is overweight, is a mom of three and doesn't even drink pop, apparently. She had painful, weird periods, fatigue, lack of motivation and a bunch of other symptoms, including low sex drive.

"My doctor said, 'You're depressed.'" As far as her sex drive, he told her, "Just fake it."

Wow. Now there's solid medical advice for you.

Jan, like me, said she doesn't feel depressed, just unmotivated. In fact, when her doctor gave her a depression test, she apparently passed with flying colors.

He refused to treat her further because she was "within range," even though he was only using the TSH as a guideline. She told me she is in the process of looking for a new doctor. God, I hope so.

I think Jan has been on meds but is still having symptoms. And because her TSH is coming back 'normal,' her jackass doctor doesn't want to deal with her. He chalks it up to the "you're an overweight mother of three" and thinks that's the end of it. She finally demanded a referral to see an endocrinologist.

Another mom told me she was having no symptoms, but bloodwork showed that she needed medication. I'm not sure exactly whether she only had a TSH or other tests done, since most doctors will only order the TSH and consider that a definitive benchmark. With no symptoms, I'm not sure how he even knew what to look for, since as far as I know it's never routinely done unless you have complaints.

I knew in my heart and in my head that something was not right - I'm not the most athletic person, but I couldn't even lift the garage door while holding my son without feeling like it was a monumental effort. Muscle weakness and fatigue are two big red flags. I'm still pissed at my OB for not even sending the results of my bloodwork from last year to my primary physician, and he never went over the results of my test with me, either. My "depression," if you want to call it that, was particularly weird - because I don't feel depressed. And for someone who is supposed to be depressed, I sure sing and laugh a lot. What's with that?

I'm nervous about medication - not in the sense that I don't want to take it, but that it'll be difficult to get levels managed and regulate everything. From what I understand, many people do well with synthetic versions like Synthroid and Levoxyl, and then there are those like Jan, who are still symptomatic while on meds. Therefore their doctors say, "But you're on medication, you should be doing fine," and won't do anything else. They pay more attention to lab results than symptoms.

I explained it to my husband like this: take the color wheel - your desired color is orange. You have two components, red and yellow, that make up that color. Many see the orange and say, "Well, it's still orange," even though there might be a little too much red or yellow in it. Sometimes it's subtle, sometimes not. If the levels of red and yellow are off, the end result might be too orange or not enough. Settling for one shade of orange might work in the short run, until you realize you really want it to be a deeper shade, for example. Then you have to tinker with the amounts of red and yellow until you get the right end result. A major oversimplification, but that's what it feels like to me.

It boggles my mind that something so seemingly common is so ignored, or mistreated. I wonder, how many people suffer through infertility because of this? Go through expensive, extensive treatments when the answer, although not entirely simple, is easier than going through IVF and a whole host of other things? How many are diagnosed with depression and given various meds when really, they're only treating a symptom? (And apparently, antidepressants will also mess with thyroid function, making the problem even worse.) How many are still symptomatic but treated, yet their doctors don't want to do anything more about it? How much of our country's overweight population is either undiagnosed or improperly diagnosed, and hanging on to extra weight, all because their doctor says, "You need to get off the couch and stop drinking soda pop!"

Most frustrating is the endless list of symptoms - some the same, some different - that various sources list. Depending on which list I look at, I have few symptoms; others, I hit almost all of them. Like other autoimmune disorders (such as Crohn's Disease and rheumatoid arthritis), supposedly hypo can produce joint pain and stiffness, although one woman said her doctor "didn't believe" that was a symptom. So, are you just supposed to live with it? Try to move on anyway? I don't think so!

When something affects the immune system, it's probably very difficult to treat - because we're all individuals. It can affect us in so many ways, but because we've lived in different areas, with different food sources, medications, perhaps chemicals we're exposed to, substances like prescription and illicit drug use, whether or not you were breastfed - who knows? When you stop treating the patient as an individual, as many people were probably 100 years ago before fancy blood tests, you start ignoring the root problem and thus, the person as a whole. It almost makes me think that, instead of seeing an endocrinologist to treat it, we should really be seeing an immunologist.

And with millions of people worldwide suffering from it, I find it hard to believe that we all have an immune disorder. One thing I keep hearing about is the fluoride connection. It's hard to find a source that doesn't sound too "woo" because few mainstream outlets, if any, are talking about it. While thyroid disorders have always existed, I'm curious if our mass flouridation in the water supply is causing so many cases. After all, we drink it, brush our teeth with it (and use fluoridated toothpaste), cook in it and bathe in it. While the concentration is considered quite low, using it every day probably produces some nasty cumulative effects.

As a result of all this, I've learned to listen to my body more, because it's trying to tell me something. A basic education in what exactly the thyroid does revealed to me not only the symptoms I wasn't even picking up on, but the fact that it regulates so much of the body's systems as a whole. Learning how it's often treated, or mistreated, helped me plan for a course of action first so I would know what to do (or not do).

The following are typical (and what some sources say are "uncommon") symptoms:
• fatigue • muscle and joint pain, even though you haven't exercised
• lack of motivation • low sex drive • hair loss • shortness of breath • weight gain
• less stamina and energy • constipation • intolerance to cold temperatures
• dry skin • changes in hair texture • brain fog • inability to lose weight, even with diet and exercise
• infertility or miscarriages • painful periods • irritability • fluid retention, especially in ankles or legs

The list can seem endless, unfortunately. And just having a TSH done often will not reveal anything specific. My advice would be to insist on more in-depth tests if you feel you are not being adequately treated. 


The Deranged Housewife said...

One thing I forgot to mention - apparently fluoride depletes iodine in the body, which affects the thyroid. In fact, years ago fluoride *used* to be used to treat hyperthyroidism - which is when the thyroid is too active. Many people with hypo drink distilled or non-fluoridated water as an alternative.

I don't normally visit this site because the guy who does it drives me nuts - but it's interesting and could explain an awful lot about why SO many people have this - because we have had fluoridated water in our city water supply (even those of us living in the country) for decades now.

Kate Rowan said...

I understand why people get so frustrated when hypothyroidism is a diagnosis. My mother has been dealing with it my whole life, and I have been watching myself carefully for when it might rear its nasty head. Its not easy. Good luck!

The Deranged Housewife said...

Apparently you have a higher risk of having it if your mother had it. And some can obviously inherit it from paternal lines and male family members. I sort of have a double-whammy, I guess. LOL

Rachel O. said...

I can't urge anyone enough to get checked if you suspect a problem. In the fall of '09 I suspected I had low thyroid function. My initial TSH came back normal, but I knew something was wrong. I was persistant and we eventually got a real diagnosis more than a year (and one baby) later. I actually had leukemia. I am not posting this to scare anyone, but to remind you that you know your body the best. Your doctor works for you. You pay them. They are, in a way, your employee. If you are not satisfied, find a new doctor. Be persistant! Don't be satisfied with "suck it up."
Also, for what it is worth, a nutitionist was a huge help to me in my quest to determine if I had low thyroid function.

Nancy Rohan said...

Although not usually life-threatening, a thyroid problem, can adversely affect your well-being. That's the reason why I always take desiccated bovine thyroid tablets .

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