Tuesday, January 19, 2010

Things are looking up! - 今年は上向きな予感。

Image by andrewdfrank.
Click to enlarge -- it's a great picture.

I've had another appointment with my endocrinologist -- and guess what? My free Triiodothyronine (T3 thyroid hormone) and TSH (thyroid stimulating hormone) levels came back NORMAL. I don't remember how long it's been since I got my last "normal" thyroid test results. One (or three or four) less pill to take? I'd take that! (Now that I know a bit more, it seems my hormone imbalances mostly stem from pituitary gland -- as TSH is produced by pituitary gland's order.)

I don't know if my thyroid glands were rudely woken up by 7 weeks of not taking thyroid medications (shock therapy??), or if additional hydrocortisone is helping, but this gives me hope -- in that maybe my body doesn't have to be screwed up forever in every gland we look at.

The nagging questions remain, though -- then why do I keep hosting opportunistic, chronic infections? (I've had a sore throat since September of last year -- wait -- was it September of 2008? Not sure.) Why do I keep hurting? But asking such things might be like riding on a time machine and going all the way back to my childhood, adolescence, and younger years -- since it might have been a cumulative effect -- so I don't have to have all the answers, as long as I keep feeling better bit by bit.

Maybe it's the quality of sleep -- maybe I'm not getting enough stage 4 sleep (a.k.a. deep sleep). (In one study, healthy college-age subjects were woken up every time they entered into stage 4 sleep, thus depriving them of deep sleep. Otherwise they were allowed to sleep. After about a week of doing this, most of them developed fibromyalgia-like symptoms like widespread pain. Isn't that interesting?) Or, is my small intestine still not healed enough to absorb nutrition & turn it into energy?

The lucky thing is, Dr. Patrick Wood, former LSU professor and head of LSU Fibromyalgia Research Department and Clinic, current scientific advisor for the National Fibromyalgia Association, has come to Pacific Rheumatology Associates in Renton. (Renton is south of Seattle, between Seattle and Tacoma.) And I have an appointment with him next week! (I was in front of the line, since I got in contact with them last year, hoping to see their other doctor, Dr. Holman, who'll be concentrating on his reseach.) This rheumatology clinic specializes in and only see fibromyalgia patients. Finally, a scientific expert! Plus Dr. Wood's services are covered (as far as I know thus far) by our excellent insurance.

I had been working with Fibromyalgia and Fatigue Center in Bellevue, which is known for following their medical director, Dr. Jacob Teitelbaum's protocol. While they were helpful in getting clues to my body's various mishaps, due to high turnover in their staff, I was onto my 4th doctor (in less than 3 years) -- and that doctor recently quit.

After my 1st doctor, I wasn't confident if the following doctors could be considered experts on the subject; and my most recent doctor quitting was my final straw. Since their treatments are only partially covered by insurance (often reimbursements were miniscule), we ended up spending a lot of money there. I'm still thankful, though, because they probably kept my chronic infections at bay with all those IVs and immunogloblin shots; That meant I didn't have to reach the point of acute adrenal crisis, which I had no idea about, and I could've died from that.

...Although it is disturbing that they once considered treating me with hGH (human growth hormone), which often causes adrenal crisis in unsuspecting adrenal insufficiency patients -> comatose -> death.

Well, see, it goes to show how lucky I am. I think my grandmother's and my aunt's spirits (and many people's prayers) are protecting me. So thank you!

My sleep doc (who happens to be the director of Virginia Mason Sleep Disorders Center! He gets extra points for being married to a Mainer) is tweaking my sleep meds, so maybe that would help my sleep and stop the hand tremors I've been having. (Those of you whose emails I couldn't respond to in a timely fashion, sorry -- every time I got tired, my hand pain and tremors got worse. It took me 3.5 hrs to write this easy post.)

I have another thyroid test and an appointment with my endocrinologist in 2 weeks -- and for once I'm excited to get test results back. Will they be normal again?

I feel like things are starting to look up. Last year was a rough year (<- evident from the number of posts), because I thought I was getting better but rather got slightly worse. This year I'm getting top-notch medical care (Dr. Wood is just starting to see patients -- I couldn't have timed it better), and getting all sorts of answers. It's cloudy outside, but my heart is filled with warmth and thankfulness. :-)

And thank you, those of you close to me, (and those who prayed for me even though we're not that close) for patiently supporting me and encouraging me -- I couldn't have done it alone.

-A (who's sorry about another long post!)

また内分泌系の専門医のところへ行ってきました。先週甲状腺ホルモンの再々再々再々再(笑)検査をするために血液を採取したのですが、なんとなんと!トリヨードサイロニン(Triiodothyronine、T3とも呼ばれる、最も強力な甲状腺ホルモンで、体温、成長、心拍数などを含めた体内のほぼ全ての過程に関与している)と、甲状腺刺激ホルモン(thyroid stimulating hormone、TSHと呼ばれ、甲状腺に働きかけ甲状腺ホルモンの分泌を促す)のレベルが、両方「正常」。これは夢???ほっぺをつねりたくなりました。薬を飲まなくていいってこと?それが一番嬉しいかも。 0(^-^)0



でもちょっと気になることは、、、甲状腺が働いているのに、何故しつこい慢性感染が続くのか?と去年の9月からずーっと水玉模様の喉が痛い自分は考えてしまうのです (あれ?一昨年の9月だったかも・・・。)。なんで体が痛いのが続くのかも。




でも幸運なことに、パトリック・ウッド先生という、以前ルイジアナ州立大で線維筋痛症のリサーチとクリニックの主任を勤めていた医師が、ご近所のクリニック(Pacific Rheumatology Associates)にやって来るのです。公式には2月中旬からウッド先生は診察を始めます、ということになっているのですが、私は去年からそのクリニックのホルマン先生(これから研究に専念するらしい)に診てもらいたくて連絡をとっていたので、なんと来週(1月最後の週)に診ていただけるのです〜。ついに、研究を重ねてきたエキスパートに診てもらえる。しかも(分かっている限りでは)保険が使える!

前々から、線維筋痛症/慢性疲労症候群センターというところで治療を受けていたのは親しい方ならご存知の通りですが、そこは(有名・リッチになってハワイに住んでいる)ジェイコブ・タイテルバーム先生という、FMS/CFS の分野では著名な医師の治療法を実践する、というところでした。そこでさまざまなヒントは得たものの、スタッフの入れ替わりが激しく、3年足らずの間に4人の医師(と5〜6人の看護士)にかかりました。そのたびぜーんぶ説明しなければならないし(これが疲れる・・・慢性疲労症候群を良くするところ、っていうのが皮肉)、1人目のお医者様のあとはなんか私のほうがいろいろ知ってるかも、と思うような感じでした。しかも今月、4人目のドクターが辞めるというのです。


・・・でも一時は、ヒト成長ホルモン(hGH、human growth hormone)も試してみる?とか言われたこともあったっけ。。。「いえそれはなんか怖いのでやめときます」と言って良かった〜。慢性副腎皮質機能低下症+hGH って組み合わせは、多数の人が急性副腎不全 -> 昏睡 -> 死、となるらしいです。

というようなことを考え合わせると、私はとてもラッキーだったんだ〜、と思わざるを得ません。祖母と伯母が天国?から見守ってくれているのと、多くの人に祈っていただいているお陰だと思います。あらためてありがとうございます! m(__)m



なんだか運気が上向きになってきた感じがします。去年は、進歩してるかな〜、と思ったところになんだか前より調子が悪くなってしまったのでつらい年でした(<- ブログ更新の数から見てもわかる)。今年はなんだか次々と一流の専門医にかかれるし(ウッド先生は患者をとり始めたばかり!ですから、なんとも完璧なタイミングでした)、答え/治療方法も出てきています。まだ1月なのに幸先がいいです(関係ないけど懸賞も2つ当たったし!)。算命学を勉強した親友みっちゃんによると、2月4日以降は晴れて天中殺があけるそうですし。


私と仲の良い皆さん(そんなに親しくない方も祈ってくださって)、思ったより長くなってしまった療養期間中、いつも支え、励ましてくださってありがとうございます。自分ひとりだったらきっと、とっくのとうにくじけてしまっていました。 m(_ _)m

- あや(また長くなってごめんなさい!)

Thursday, January 7, 2010

新年、新診断、心新たに - New year, new diagnoses, new hope

I hope Takarabune (Treasure Ship) brings you much happiness!

m(__)m(おそいって~。) 皆様、いつも進行がおそーーーい


またしても初詣を逃した!!! (T_T) ウルウル




  • 脱力、全身倦怠、過度の疲労
  • 起立性低血圧(立ちくらみ)
  • 食欲不振,悪心,嘔吐,下痢または便秘
  • 代謝低下
  • 寒さに耐えられない(耐寒性低下)
  • 目眩(→コルチゾールが不足すると失神)
  • 体重減少、脱水
  • 低血圧
  • 筋力の低下(重たいものが持てなかったのはそういうことか!)
  • 神経過敏、うつ病
  • 低血糖
  • 頭痛
  • 生理不順または欠如、、、などなど。
自慢にならないけど、、、(^^ゞ ポリポリ



(火事場の○○ 力が自力で出せないってこと。)





あることが多いそうです。 例えば副腎皮質機能低下症と、



乞うご期待!? 体調が許すかぎり(できるだけ)更新・報告しますね~。


- あや

かのくん ↑ かわいすぎでしょ〜。
↑ Oh I so would love to touch those cheeks.
(Click to enlarge & see her precious eyelashes!)
Japan-America cute baby-cheeks contest!!!

I'm about a week behind, but better late than never -- happy new year!!!

Thank you so much to those of you who have the patience to stop by my blog, which gets updated exeeeeedingly slowly sometimes. :P I wish you much happiness, and more than anything, *health* in the new year.

My new year holiday was... well, let's just say it was spent peacefully indoors. I had a Dr's appointment on the 30th and a dinner date on the 31st, resulting in a dreaded two-days-in-a-row outings, so naturally I was knocked out for a few days. Nothing horrible. No death, no fuss. And thanks to our family's extraordinary kindness, we got to have a very extravagant (almost too much so) New Year's Eve special dinner at my most favorite restaurant, so I was a happy knocked-out girl.

(Holly Smith, the chef at Cafe Juanita, once again delivered the goods by making me a superb gluten-, egg-, dairy-free dinner -- unbelievably good. I felt so special!)

Once again, I failed to go to the local shrine for a traditional new-year visit... Oh well. (-_-) The shrine is kind of far away (maybe 50 minutes away?), making the trip rather prohibitive when I'm not feeling well. (Taking the vibration from bumps on the road for more than 30 minutes usually results in painful days afterward.)

But! I might be able to extend the distance which I can travel (currently at less than 30 min) this year!

Because of the persistent low white and red blood cell counts (aka abnormal aneeemia that's not caused by iron deficiency), my PCP sent me to an endocrinologist. After a few poking, lying and waiting, more poking (aka ACTH stimulation test) and an MRI, it turned out I have what's called secondary adrenal deficiency. It's sometimes called secondary Addison's since the symptoms are the same, but origins differ: In Addison's disease, the adrenal glands are underactive and unable to produce enough adrenal hormones (cortisol & aldosterone). In secondary (sometimes tertiary) adrenal insufficiency, the problem lies more in the (hypothalamic-)pituitary-adrenal axis function, resulting in not enough cortisol output (the pituitary gland is not producing enough signal, ACTH, to prompt corticol output). Ah, how a pea-sized gland can be in charge of so much that happens in the body! (It sends orders to most other glands, earning its nickname "the master gland." Sounds almost devious, doesn't it?)

In plain speak, if I were a car, the main computer (or the electrical parts after you turn the key) wasn't telling the car it needs gas. So I wasn't getting gas -- with the engine (& other parts of the car) running on an empty tank. That seems bad for the car, doesn't it.

According to the MRI, there are no tumors or obvious blockage around my pituitary gland, so that was lucky.

Symptoms of secondary adrenal insufficiency (which I've had most of, except fainting!) are:
  • chronic, worsening fatigue
  • muscle weakness (It explains why Daniel had to carry my purse all the time! I love a man who's not uncomfortable carrying a purse.)
  • loss of appetite, weight loss
  • nausea, vomiting, diarrhea, and/or constipation
  • low blood pressure that falls further when standing, causing dizziness or fainting
  • irritability and depression
  • hypoglycemia, or low blood glucose
  • headache
  • sweating
  • in women, irregular or absent menstrual periods
So in order to replace the lacking glucocorticoid hormone, cortisol, I'm supposed to take about 2.3-3.5 times hydrocortisone (currently 35mg/day) compared to what I was taking (10-15mg/day). In case anyone's wondering, apparently my insufficiency is not caused by having taken small amount of cortisol, because the amount I took was way too small to cause damage.

Also of note: In case of emergency (high fever, injury, etc.) or surgery, apparently I need help of extra hydrocortisone, because cortisol is a stress hormone designed to enable my body to handle additional stress. If I don't get that extra bit, I could go into what's commonly known as Addisonian crisis, or adrenal crisis, sending me into a coma or other life-threatening states.

...I ordered one of those medical ID bracelets right away. I'm so lucky nothing had happened before I found out!

Unfortunately, being able to treat this condition doesn't mean that it's a cure-all for fibromyalgia or chronic fatigue syndrome. They can coexist. However, once the proper dosages of medications are determined, I'm likely to get more energy! Hoping doesn't hurt! (Since taking hydrocortisone is replacing the body's natural hormone -- like type I diabetes patients taking insulin -- there should not be serious long-term side effects. Fingers crossed.)

The next up comes thyroid testing (whoo hoo), the week after next. I have to have been off thyroid medication for 6 weeks in order to get accurate results, so I'm prohibited to take my thyroid pills. This makes me sluggish and bloated, but if that means feeling better later, I'm all for it!

Another discovery (although I knew this in my peripheral knowledge through studying type I diabetes) was that when a person has one autoimmune disease, she/he is much more likely to have another (Celiac, type I diabetes, etc.). So my Dr. thinks my condition is of an autoimmune origin. When a person has both 1) adrenal insufficiency/Addison's and 2) thyroid dysfunction, (polyglandular deficiency syndrome/PDS type II) apparently it's very common (like, 50%+) to have type I diabetes, so in that regard, once again I'm very lucky thus far.

(Writing this, I've realized I'm lucky to the third power!)

Stay tuned... I'll (at least try to) keep you updated!

Wish me luck ;-)

- A