Not because I didn't trust your diagnosis of Zombie Fever and/or Bieber Fever, but because my endocrinologist's non-answer answers were just vague enough to make me wonder if she had any idea what the hell she was talking about.
Also, frankly, Zombie Fever sounds more plausible than throiditis. I mean, thyroiditis sounds totally made up.
The first endocrinologist was at an admittedly podunk hospital. Our Lady of the Blessed Agony or something, I think it was called. Agreeing to be referred there was a rookie mistake on my part. I live immediately outside Philadelphia, home to some of the nation's best hospitals. Why settle for second best (or possibly somewhere around sixth best) when you can just as easily go to a top-flight teaching hospital?
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| Apparently now Dr. House is worth it, too. |
I'm sure no one will be surprised by the fact that you guys were right. Well, not about the Zombie Fever. But after reviewing all my bloodwork and poking me in the neck, my new-and-improved endocrinologist said I have classic Hashimoto's Thyroidits, which was right up there in your diagnoses.
Ding ding ding! You guys win!
Hashimoto's Thyroiditis, despite sounding like something from a 1950s Godzilla movie, is an auto-immune foul-up of the thyroid, where you start out hyperthyroid, dip to hypothryoid, and then (usually) level out to normal.
It's also an auto-immune disease, which puts me at a greater risk of having (now or in the future) other auto-immune diseases. I also saw a rheumatologist at said top-notch hospital, who wants to rule out Lupus.
When I dip down to hypothyroid, the doctor will dose me out some kind of thyroid supplement. If I'm one of the 20 percent of patients who doesn't ever quite go back to normal, I'll be on that med forevah.
In the mean time, there's nothing we can really do about my hyperthyroid symptoms. I'm not a good candidate for beta blockers (offered by the first endocrinologist) because I have asthma, and because it will make my dizziness worse.
Aside from the fact that my hairline is receding and I feel like I'm constantly on the verge of blacking out or having a panic attack, it's not so bad. I've decided to embrace my temporary hyperthyroid situation and enjoy the weight loss and insomnia while the going's good. I had put on some weight during our sojourn in Texas, and now the pounds are just melting off. Probably I'm burning a lot of calories with the constant tremors.
And the insomnia has really freed up quite a bit of "me time." It's amazing how much I'm getting done between the hours of 11 p.m. and 3 a.m. now that I'm not wasting my time sleeping. I finally cut out caffeine entirely because I'm already like a crackhead, so that's good news for my breasts. No more Diet Coke-filled cysts for me!
I even tried cutting out my Adderall to see if that would help, but then I was jittery and stupid, instead of just jittery.
Sure, I'm jacked up all the time like the Caffeine Patch Lady on Meet the Robinsons, but hey, it's all good.
Caffeine Patch Lady is possibly just hyperthyroid.
Hashi's sucks donkey dong. I have had it for over a year and still never feel right. I am surprised you are sleepless and losing weight though because hypothyroid (hippothyroid, as I call it) usually does the opposite. I could barely get off the couch to turn on Master Chef and get the Dorito's. Hang in there, Hashi sister. Make sure they monitor your TSH often. I make them up my meds if I get above a 2.
ReplyDeleteI CAN'T BEGIN TO EXPRESS HOW YOUR CONSTANT ABILITY TO SEE THE HUMOR IN EVEN THE TOUGHEST (OR GROSSEST, OR MOST STRESSFUL) SITUATIONS HAS HELPED ME TO SEE THE BRIGHT SIDE IN MY OW LIFE. i HEART YOU AND YOUR CRAZY FAMILY! NEXT TIME I'M IN P.A., I AM TOTALLY COMING TO VISIT! (I HOPE THAT IS OK) ANYWAYS, GOOD LUCK WITH YOUR CRAZY, RARE DISEASE.... (((((HUG)))))
ReplyDeleteWelcome to the Hashimoto Club. (Now that sounds like a Japanese strip club frequented by businessmen.)
ReplyDeleteI'm one of the 20% whose thyroid never went back to normal.
I take levothyroxine, (50 mcg) and I have for coming up on 8 years now. No biggie.
Here's to your health! It's a relief when it starts getting balanced again.
Dang I missed the manic phase of the death throes of my thyroid; must have been when I started having vivid fantasies of killing my neurotic, stuffy colleagues when rubbing elbows during weeks of business travel.
ReplyDeleteI couldn't get a diagnosis - blood wasn't fancy enough I guess!
I did love my year on prednisone though!! If you ever do get another auto-immune disease, you'll get to do this again!
Enjoy it while it lasts!
FYI it takes more than 6 weeks for the thyroid to equilibrate. Get a TSH when you aren't sure, and a full panel at least once a year.
ReplyDeletemake sure they are also checking T3 and T4 levels as the way they play together and find balance is not evident through TSH levels alone.
ReplyDeletethroughout it all be very good to your adrenals, which are taking a beating with all the hormone changes in your body due to thyroid issues. especially since you are not sleeping...vit C is the least you can do (not ascorbic acid).
thanks for a good laugh. write another post when you hit hypo...if you have the energy .
Here's a shortcut to all the crap your doctors will be putting you through in the next few years: stopthethyroidmadness.com. I dealt with the Hashi's craziness for years and then got thyroid cancer (another joyful "side effect" of untreated Hashi's). Wish I would have found this website YEARS ago, but it has saved my life. Without it, I would be a slobbering bimbo listening to crappy doctors and sitting on the couch all day. Now I'm just a bimbo. ;)
ReplyDeleteMy friend was going through some screening to rule out Hashimoto's last year and when she told me the diagnosis, I promptly started calling it "Quasimoto's disease" and told her she was going to grow a hump.
ReplyDeleteI'm a really good friend.
I hope you are feeling more "yourself" soon. I do, however, think you should not yet rule out Consumption or Thyphus.
ReplyDeleteIt's never lupus.
ReplyDeleteBut on a more serious note, glad you are getting some real answers.
Welcome to the neighborhood! Mine used to go back and forth, and now it has settled on hypo for a few years. I feel great if you don’t count the total lack of energy, hence the massive quantities of Diet Coke and lumpy breasts. Take care ; )
ReplyDeleteI would like to suggest you read a great book by John R. Lee, M.D.
ReplyDeleteI see so many symptoms you have mentioned listed in the chapters of the book I have been reading to help myself. This particular one is titled What Your Doctor May NOT Tell You About Menopause. Don't take offense please, there are others that I am sure include information on hormone balance. This book talks about every stage of a woman's life from P.M.S. to post-menopause. It seems the doctors like to treat symptoms upon symptoms rather than go to the real problem which is usually hormone imbalance. Also he shows how bad synthetic hormones are for our bodies but doctors keep prescribing them rather than natural ones.
I love your humor and writing! Thanks for sharing with us!
I was diagnosed with Hasimoto's when I was 8 (yeh, I'm that special) and 17 years later I take 150 mcg of Levoxyl every day. Well, almost every day. I sometimes forget. Who knows how after so long. I blame my small children and the fact I work nights full-time. But once you're out of the hyper zone it's much better. You may turn into a zombie if they don't keep track of your levels well enough, so keep an eye on that.
ReplyDeleteGlad you went out of your way to get another opinion SRMM, it obviously was worth it. I wanted to say "ditto" to the person who suggested that your Doc watches the T4 and T3 as well as TSH, though he probably will automatically. Hope you move out of the hyper phase quickly, and with proper treatment you can live quite comfortably in the hypo stage. I had my thyroid removed completely many years ago and have done well on replacement therapy. Good luck.
ReplyDelete~physicsmom
My Mum has battled with Hashimotos.... and doctors. She has had some success through a doctor who is also a naturopath that specialises in hormones. She prescribed "reverse T3" and it has really worked. Make sure they don't just test TSH but also T3, T4 and Thyroid antibodies or they won't have the full picture. Naturopaths deal with this condition in a different way and Doctors and naturopaths don't see eye to eye so if you can find someone who is both you may find they have the best of both worlds. Good Luck!
ReplyDeleteUgh! I have had it for over 20 years. Went misdiagnosed for awhile because I was supposedly "too young" for it. I'm not sure where the heck I was at, but I missed the HYPER phase totally - went straight to hypo. LOL! I am on 175mcg Synthroid and probably going to be increased in Oct. (feel like crapola right now).
ReplyDeleteWelcome to the club girlfriend!!!!!
My hyper stage was doable, other than freaking out at the heart beating out of my chest. Now that I am in hypo-mode, I HATE it. My skin feels like a lizard! I'm breaking out from the immune system being compromised, but I also have skin peeling and flaking, I look like I've aged 20 years in 2 months. I'm SO ready to be done with this. I'm going on my 2nd year, but each time I have my blood checked (about once a month) my antibodies have come down a bit. Peroxidase levels were over 400 when we finally figured out what was wrong, now they are down in the 170's (30's being normal). My lymph nodes on the right side of my neck have been irritated, I've had dizziness and literal pain in the neck! I've personally wondered about lupus too, but none of my docs are going there at this point.
ReplyDeleteAll of this to say, I totally understand, hang in there, at least there are some answers and we know there is an end to it somewhere. :D
I'm SO glad I found this. I've been going WITHOUT AdderallXR due to my daughter stealing it, and selling t at the high school. It's taken me SEVEN months to prove my Peroxidase increase was due to lack of AdderallXR . I FINALLY have an appointment with an Endocronologist, and CANNOT wait to get back on AdderallXR! I will FINALLY be pain free, able to function without the overwhelming sleepiness I've endured for WAY TOO LONG. I was not able to go back to m original AMAZING Endocrinologist due to his not accepting Medicaid (I also have two Ron knees, and three slipped discs...and torn ligaments & tendons on my right forearm from a recent experience with a Steel Baseball Bat). I'm in enough pain, and without my ability to be properly medicated, I've been in such HORRID pain that I reconciled myself to temporarily using nicotine patches for my idiopathic edema. It's worked up till now...I'm experiencing rashes due to the at he's, and THANK GOD it was just when I finally found m Endocronologist.
ReplyDeleteI have a quick question for all out there. My specialist was in Philadelphia, and I was told the New Jersey Endocrinologists are not able to prescribe AdderallXR.
ReplyDeleteIs this true?
Do any f you live in New Jersey and have no problem with getting AdderallXR?
Thanx a bunch!