Goddamn Useless Thyroid!!! (Long, boring and TMI)

Okay. So, about a year ago, I thought I was depressed. My wonderful father had suddenly died, I was helping my mother cope, I had all kinds of symptoms of depression. Didn’t want to leave the house, didn’t want to read or listen to music or watch TV or do anything at all except sleep and stare at the wall. I gained around 35-40 lbs in <6 months, while skipping most of my meals from lack of appetite. (That one was a real mystery.) My hair was like straw, my skin was flaking off, and for the first time in my life, I was so damned constipated I couldn’t bend in half. Finally, when I noticed a big swelling in my neck, I put two and two together and went to the doctor.

Hashimoto’s thyroiditis. Just as I suspected.

The test for this is TSH. I won’t go into it, but mine was slightly elevated, which sort of confirmed. (Of course, having a big-ass goiter helped too.) My doctor put me on Levoxyl (thyroid hormone) and all was well.

For 3 months.

Then, the symptoms started coming back. After about a month, I panicked and went back, begging for more Levoxyl. My TSH looked OK, but the doc was a nice guy and increased my dose. I felt better in a couple of weeks and all was well.

For 9 months.

Then, the symptoms started coming back. After about a month, I panicked and went back, begging for more Levoxyl. (Does this sound familiar?) My TSH just came back, and the lab looks just fine, hunky-dory. The only problem is, I was feeling like shit (not that I could actually produce any of same without Ex-Lax) when the blood was taken.

I started taking a tablet and a half after my doctor’s visit and the blood test, to see if I felt any better. After a week or two, I feel normal again. No more Ex-lax, no more 4 hour naps on the weekends, no more falling asleep at work, and I’ve lost two pounds in the last two weeks.

BUT!

I am waiting for the doctor to call back. Now, I’m really stressing out. Will he trust me, trust that I know my own body, and give me more? (I was on 125 mcg/day, hoping now for 150 or 175 mcg/day. Not the top possible dose by any means.) Or will he treat the lab value, and ignore me? I have told the office that if the Dr- who has been my GP for the last 15 years–doesn’t feel comfortable giving me a higher dose, I’ll need a referral to an endocrinologist to work out what’s going on.

CRIPES!!!

Now, this is just what I need. A specialist, who will take a month to see me, and another month to do anything about the problem, while my meds run out. While I spend my days in a half-asleep fog, and spend all night straining on the john in hopes of pushing out the raisinets that pass for poops when the thyroid isn’t putting out.

ARGGGGGH!!!

Nobody cares that my blood pressure isn’t high, my heart rate is perfectly normal, and I’m not trying to become HYPERthyroid, for pete’s sake! I have no interest in being hungry all the time, having palpitations, jumping out of my skin, and having my eyes bug out. I just want to feel normal! I just want my body temperature to go above 97 degrees for a change!

Whew…that feels a bit better now. I don’t really need a response, I just needed to vent…

Thankew.

(Next time, if I feel better, maybe I’ll put in more profanity.)

Yeah, I fucking hate my thyroid for exactly the opposite reason. Everything you said, imagine it in reverse: Eating like a horse and dropping several pounds a day (not bad), running around the house at 2am like I was on crack, hostile enough to my friends and family that it’s amazing I still have either, hands shaking like I had Parkinson’s, and get this:

Waking up paralyzed. All extremities. Later diagnosed as hypokalaemic periodic paralysis brought on by hyperthyroidism. Very lucky I didn’t die of a heart attack during an episode (I’m thirty).

Anyway, my whole condition is very rare, and nobody could tell me how it originated. I researched it myself, and drew a scientific link from prolonged contact with concrete I was working with at the time, to alkaline poisoning (which, causes not only HPP, but also hyperthyroidism). Anyway, the doctors were pressuring me into getting part of my thyroid destroyed, which in all likelihood would’ve kicked me into the exact symptoms you are experiencing. I presented my exhaustive research, and although they could not tell me why I was wrong, or what caused my condition, they insisted it wasn’t the concrete that did it. “Never heard of it”, they said.

Now, I presented them with evidence that I was exposed to high levels of alkalines through the concrete (I worked knee deep in the stuff for three days with out any protective gear. Stupid…) And that excessive intake of alkalines causes metabolic alkalosis, and that MA causes both hyperthyroid AND this ultrarare condition, Hypokalaemic periodic paralysis. Still said I was crazy.

Anyway, I told them I refused to get my thyroid destroyed, and since there was no specific harm in taking a med to stimulate my TSH, I would do that indefinitely until they could provide me with a satisfactory explanation for my condition. Three months later I stopped taking my meds, self-monitored my condition, and am now symptom free (three years now).

Doctors do their best, but sometimes you need to trust your body. If I remember correctly, I don’t think taking additional meds to suppress the TSH level does much of anything to make you hyperthyroid, so your Doc may not have a problem increasing your Rx.

Anyway, just wanted to let you know someone out there sympathizes with you.

Fellow thyroid sufferer checking in. About 2 years ago, I was diagnosed with hypothyriodism, after having a lot of your same symptoms- extreme fatigue, hair dry & falling out, muscle aches. I was on Synthroid for about a year, kept feeling crappy even though my labs were saying I was “normal”. I have switched to Armour thyroid, it’s a natural supplement (as opposed to Synthroid which is synthetic), and it has T3 as well as T4 in it. I felt MUCH better after switching to that.
Some resources for you to check out: The Thyroid Solution by Dr. Ridha Arem- it’s a well-written, concise book that became my bible for a while. It talks about how much your thyroid is tied in to your emotions and your well-being- there’s even a chapter called, “No, you are not making it up” ! It made me feel better to know that what I was going through was normal, and that I was not alone.
Another book is Living Well With Hypothyroidism by Mary Shomon. It’s another well-written book but she tends to be wary of most “regular” docs becasue so many of them don’t understand what the thyroid sufferer is going through. She also hosts a great website, www.thyroid.about.com. It’s got a lot of pop-up ads, and a lot of the material is also in her book, but there’s a thyroid forum where you can go & vent about your issues and have people know EXACTLY what you’re talking about!

What I’ve learned is this: that most docs treat thyroid like their textbooks say: tests are out of whack, give the patient some Synthroid and they should be feeling normal within 6-8 weeks. And it ain’t necessarily so, baby! It took me a YEAR of tinkering to get my TSH to within normal range on Synthroid- had to get my blood drawn every 6 weeks, one time it would be in the hyper range, the next time it would be hypo. Plus, what most people have found is that just because your TSH is within the “normal” range, it doesn’t mean you feel better. Apparently- and this is anecdotally, it’s not been proven scientifically- most people feel better when their TSH is around 1 or 2. I’m discovering that this is the case with me- back in November my TSH was around 2 and I felt GREAT! Just got it rechecked, and it’s over 3, and I feel crappy again! I have an appointment with my doc next week to discuss my bloodwork.

WHEW! Anyway, I know how frustrating it can be. There were months where I didn’t want to do anything or see anybody, and my husband even sat me down for a talk because he was worried that I didn’t love him anymore! And the endless fatigue, having joint pain that made me feel like an arthritic old lady, seeing large clumps of hair on my hairbrush… IT SUCKED! All I can say is, check out those books, go to that website and rant a little on the forum, you’ll feel better. Find a doctor that is willing to work with you and try different things and is going to treat YUO, not just your labs. GOOD LUCK!