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Misdiagnosed Twice??? What do I do?

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Old 07-09-2007, 10:27 AM   #1
Join Date: Jul 2007
Location: Canada
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chico72 HB User
Misdiagnosed Twice??? What do I do?

Hi Everyone,

I'm new to the site, but I can't tell you how happy I am to see that so many of you have stories of being misdiagnosed. Let me rephrase that. I'm not happy you've had to struggle to be diagnosed, but I'm happy to hear that it happens as I'm hoping that's what's happened to me. I've recently been on some trying to conceive message boards, and a couple of girls on a hypothyroid thread mentioned about being misdiagnosed. I inquired as to whether this happens often, and they told me that unfortunately, yes, it happens quite frequently. That's how I ended up here. And now I see so many of you have had that very problem. I wish I would have known sooner.

I'm not sure exactly when, but within the past five years, I started experiencing unexplained swelling in my calves, ankles, and feet. I'd had it checked and they were always stumped. They would immediately do a urine test to check for diabetes, and when that came back negative, I was always just sent home to put my feet up. This went on for a couple of years. A couple of years passed, and I suddenly had an alarming and inexplicable weight gain. I've been a size 18-20 most of my entire adult life. Although overweight, I was healthy and energetic. But suddenly, I went up three dress sizes in 6-8 months, with no change in my eating habits, or rate of physical activity. I really started panicking then; thought for sure something was seriously wrong with me. Had severe ankle swelling again, and went to emergency. They were really badly swollen. This time, after the usual urine tests, I was again sent home with a perscription to put my feet up. But this time, the doctor suggested if the swelling happened again, to perhaps have my thyroid tested. I got to searching online, and found that many of the symptoms were things I was experiencing. Finally overcame my embarassment and fear, and went to the doctor.

I told her of some of my symptoms, and explained my concern at the rapid weight gain. She ordered blood tests and they of course came back normal. She told me that it was probably just a metabolism change as I was getting older. (I'm only 35 now.) I told her that unless my metabolism had come to a screeching halt, that it couldn't be metabolism/aging related. But she assured me my levels were normal. So I let it go. I felt depressed, and deflated, but figured it was genetics, or just me.

The ankle situation is pretty much constant now, as is the never ending fatigue no matter how much I sleep. I'm also experiencing an intolerance of heat (and it seems I'm hot all the time), anxiety/panic, rough, dry skin, nails brittle and ridgy, pain and muscle aches, especially in my feet, hands and feet fall asleep easily, possible sleep apnea (from hubby's descriptions), and little or no sex drive. And my husband and I have been trying actively (charting/monitoring fertility), for two years to get pregnant with no luck. So I had bloodwork taken again a couple of weeks ago, and was told yet again that my results were normal. The nurse told me that my iron was low, and I could get a perscription for that if I wanted. I told her no, that I wanted to see the Dr. because something was going on. So now I have an appointment for the 24th of this month.

But what should I tell/ask her if she insists my levels are normal? Here in Canada, I need a reference to see an endocrinologist. Should that be my next step? Just no clue what to do and would appreciate any suggestions and help I can get. Thank you all for reading this far and thanks in advance for your responses!

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Old 07-09-2007, 07:44 PM   #2
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Re: Misdiagnosed Twice??? What do I do?

In a nutshell, if your doctor only did a TSH test, she absolutely cannot know whether your thyroid is to blame for your ills or not. It simply isn't enough to tell anything.

Next time when you go, politely insist on these tests: another TSH, free T4, (free T3 if you can push the limits), and the thyroid antibodies. If the TSH is above 2.5 and/or the free Ts are below mid-range and/or you have thyroid antibodies, you are probably hypothyroid. Most doctors will tell you that if all these levels are within the reference range, you can't possibly have a thyroid problem. But they're wrong, and you can.

I'll warn you that you'll have a harder time getting cooperation on these tests than someone with private insurance will have. I'm sure it takes a great deal of persistence to get very far with the health service. I wish you the best of luck!

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