On metabolism, menopause and muffin tops

Why I hate doctors: Part 3

[I originally wrote this as a stand alone post and then lost it. Happily, I found it so I have decided to use it as Part 3 of my thyroid series. Because it pretty much covers the entire last ten years of my life, since being diagnosed with Hashimoto’s disease. It’s slightly rambling and incoherent but, well, that’s me.]

There is very little difference between an excuse and an explanation, so I’m going to call this post an explanation – but you can feel free to call it an excuse.

For the last two months or so I have been feeling totally like crap and finding it hard to do anything productive or worthwhile. My biggest problem lies in constant hot flashes, happening ten to twelve times a day and several times during the night. During the evening, it is followed by teeth chattering chills (I have taken my temperature at this point and it usually registers between 96.5 and 96.9). Sweat, freeze, sweat. Repeat. This does nothing for my resolve to get more sleep. It is almost impossible.

It’s uncontrollable and exhausting and the embarrassment factor makes me want to stay in my house and go nowhere. To a certain extent, I enjoy being a hermit, but I don’t want to spend the rest of my life that way.

Over the last year that this has been happening I have put off making a doctor’s appointment because I find 98% of the doctors I have been to irritating and frustrating.

And I’ve further convinced myself that whatever doctor I see is going to attribute these problems to menopause – based strictly on my age. And they won’t listen to me when I try to tell them it may be something else because, I’m old, menopausal and deluded. Oh, and stupid. I heard some rumblings in the menopausal direction the last time I saw a doctor.

But the truth of the matter is, I really don’t think this problem with my internal furnace is menopause related. At first I did, but I don’t think that anymore. I think it’s directly related to my untreated thyroid gland, with perhaps some adrenal issues thrown in for good measure. But even when I ask, they refuse to do any testing on my adrenal glands. Why is that? Why do they act like running a special test is taking money out of their pocket?

Here’s how a typical appointment with an endocrinologist goes. It is already frustrating enough without adding in the menopause factor. (In the vernacular of MizFit, please to excuse the language.):

Asshole Endo #9: Your thyroid is really enlarged.

Me: (Thinking: No shit, Sherlock; it looks like an Adam’s apple) Yes, it is.

AE9: We should send you for a biopsy.

Me: (Sigh – I’ve done this many times before) Okay.

One week after the biopsy I go back to the Endo for results. Because, you know, they can’t just tell you on the phone – there’s no office visit money in that.

AE9: Good news – the biopsy is negative.

Me: Good. (Waiting to hear where we go from here)

AE9: So make an appointment in about three months and we’ll see how it’s coming along.

Me: (Thinking: Fuck you, fuckstick Aw, go jump in a lake.) Okay.

So, again, I have wasted my time giving this doctor my 20-year thyroid history, just to have my symptoms ignored and told – “Come back in three months”. Do you think there is anything they could possibly do to alleviate any or all of these symptoms?

No, there is not. Because, apparently, they are confused. And stupid, but that’s another story. Although my blood work sometimes shows my thyroid to be OVERactive, my symptoms have always been those of an UNDERactive thyroid. I have read this is common with Hashimoto’s disease – for your TSH levels to swing back and forth. Ignoring my symptoms, and looking only at the blood test results, their biggest suggestion is that they can “nuke” the thyroid (radiation cocktail) and kill it. No thank you. I have read too many horror stories.

(Interesting side note: Recent studies have shown that the use of radioactive iodine to destroy the thyroid is usually the LAST course of action in Europe, but it is the FIRST course of treatment in the U.S. Why? Because it’s easier for the doctor. For some entertaining reading on this ridiculous procedure go here – and be sure to scroll down and read the “precautions” and you will see why I would rather have them cut the dang thing out than “nuke” it)

So to make this long story short (I know, too late) I have finally come to a point where I’ve realized I’m just going to have to bite the bullet and make that appointment because there may be no other way to get some relief. Ignoring it really isn’t working for me.

And if the next one doesn’t fix me, I’ll try another one. And another. Because my health (and my quality of life) is really too important to leave in the hands of healthcare professionals who don’t care. I’m sure there is someone out there with whom I will “click”, so I’ll just keep trying.

Now on to the muffin tops. I notice that I have developed them. Ick. See what happens when you feel generally poopy and think eating well and exercising is too much work? Muffin tops. This cannot happen. So, it’s off to endocrinologist number 10 for me. As soon as I can work up the energy to find one and make the phone call.

Wish me luck. No, wait. Wish HIM luck. Because if he tries to blame this all on menopause, I may have to kill him.

What your doctor doesn't know CAN hurt you

Why I hate doctors: Part 2

Pretty much the only time you hear about the thyroid gland is when someone tells you how they just can’t lose weight because they suffer from a “thyroid problem.”

As a result, when most people think of the thyroid gland, if they think of it at all, they think, “eh, thyroid gland…big deal.” But it is kind of a big deal. Every cell in the body depends on thyroid hormones for the regulation of metabolism and if it’s out of whack, trust me, you will be a total mess.

Prior to the 1970’s, all thyroid problems were diagnosed based on symptoms and treatment was given based on the abatement of those symptoms. Today, those symptoms are oftentimes quickly diagnosed as “depression” and treated with anti-depressants. Not only does this not help to alleviate the patient’s symptoms, it’s also dangerous to the patient’s health.

Undiagnosed and untreated hypothryoidism can lead to infertility, high cholesterol, and heart problems – among other things. There are many people of the opinion that conditions such as Fibromyalgia and Chronic Fatigue Syndrome (coincidentally, new diseases that popped up after the ‘70’s) are nothing more than undiagnosed hypothyroidism.

I don’t want to get overly technical here, because I’m no expert, but what it comes down to is this: Thyroid problems, either hypothyroidism (an underactive thyroid) or hyperthyroidism (an overactive thyroid) are diagnosed based on the amount of thyroid stimulating hormone (TSH) put out by the pituitary gland. If you have too much TSH floating around in your system, you are hypothyroid; too little and you are hyperthyroid.

In the early ‘70’s the test for diagnosing thyroid irregularities was created based on the TSH levels of 200 test participants. A range of “normal” was then created and has become the standard. Unfortunately, the volunteers who participated in this study may or may not have been 100% free of thyroid problems. So what do you suppose this does to the normal range? It skews it so far out of line that a patient with test results in the “normal” range may actually be hypothyroid.

A “normal” range of .5 to 5.0 was created and became the ONLY thing doctors have looked at in the past 30 years.

The truth is, if your TSH level is 4, you are probably hypothyroid. A new range of .3 to 3.0 has been recommended, but most doctors haven’t paid attention. Thyroid patients have found that they feel best usually around 1.5 or 2. But nobody is going to do anything to get your level down to 1.5 or 2 because 4 is “normal.”

If your TSH level is in the “normal” range, doctors generally couldn’t care less what your symptoms are. You are FINE. Quit whining. And pay the receptionist on your way out.

When I think back to the very first doctor I saw about this problem (my ob/gyn because this started with the birth of my second child) he said to me, “Oh, that all definitely sounds like your thyroid,” and I remember him being puzzled because the blood work all came back normal. He actually said, “I would have SWORN it was your thyroid, but I guess I was wrong.” See? He was right on the money but second guessed himself because of that flawed “normal” range. If he would have gone with his instincts and treated me based on my symptoms, I could have avoided all this misery. Instead, he was the first doctor to give me an anti-depressant.

If you have any of the symptoms of thyroid disease, even though your test results have been normal, I suggest you do some reading at Stop the Thyroid Madness. It was an eye-opener for me. The knowledge I’ve acquired there hasn’t done anything to “fix” me, because every endocrinologist I have ever met has been a total asshole, but at least I know what I’m dealing with.

If I could fix this thing myself, I would. Unfortunately, I can't, so I'm at the mercy of doctors who won't take one extra minute trying to figure out what is wrong with me and how to make it all better. Where is Dr. House when I need him?

To be continued…don’t worry, only one more…

Why I hate doctors: Part 1

People are always saying to me, “Mrs. Jelly Belly, why do you dislike doctors so much?” Well, okay, that’s a lie. No one has ever asked me that. But if they did, and if I was able to tie them up and force them to listen to my long, sad story for a couple of hours, following is what I would tell them about my 22-year battle with doctors.

So welcome to yet another 3-part mini-series (please direct hate mail to NaBloPoMo), this time relating to thyroid glands and doctors who just don’t care.

Suppose you started feeling sluggish and unusually tired even though you were getting enough sleep. Suppose, in addition, that you started to have problems with concentration and memory and that you no longer got any enjoyment from the things you once loved to do - and even the smallest task began to seem like too much trouble. What if your hair and skin got extremely dry and some of your hair even started to fall out?

If those things happened to you, a previously energetic, happy, focused person, you would most likely make a doctor's appointment, right? Assuming, of course, that you could conjure up the energy to pick up the phone to do that. Because you would want this thing fixed. And you would want it fixed now.

So suppose you get to the doctor's office and s/he tells you that it is all probably "nothing" and you are just rundown due to recent childbirth/menopause/menstrual cycle/burning the candle at both ends/the weather, blah blah blah, but s/he will humor you by having your blood tested.

Your blood tests all come back within the normal range. Your doctor pats you on the head, either literally or figuratively, and tells you to get some sleep and everything will be fine. In the meantime here is a prescription for Prozac. You are probably depressed. Even though you are very happy with your life, you take the prescription and pray that it will bring relief. It does not.

And although this same appointment happens over and over again over the course of ten years and under the care of five different doctors, no one ever considers it might be your thyroid gland. Because your blood work is all normal. Let's try different anti-depressants. We'll find one that will fix you. Don't you worry.

In the meantime, your life continues to fall apart because most days you just can't FOCUS or work up an INTEREST in anything. You have dropped out of school and your friendships and family relationships are faltering because you just can't maintain them. It's too hard to pick up a phone and have a conversation. To make plans. To follow through. Reading the daily newspaper is a thing of the past and you can't remember the last time you read a book. The time you spend with your children isn't of the quality you had always envisioned. Your marriage ends, partially because you just don't have the energy to try to fix it.

Until the day comes that your thyroid gland becomes so swollen you can’t swallow your food without fear of choking.

And now, because the Ear, Nose and Throat guy thinks you might have thyroid cancer, you are taken more seriously. For the first time, your thyroid gland is recognized as a potential culprit. Yes, perhaps your blood work might show a slight elevation of your TSH levels, and, oh, wait, there are tons of antibodies floating around in there attacking your thyroid gland. So let's get you biopsied, and sonogrammed and run some radioactive crap through your system just to see what we're dealing with here.

And you let them. Because they have given your problem a real name. Hashimoto's Disease. And now you are sure they are going to fix you. You feel hope.

To be continued...