Hypothyroidism - a walk in the dark
If you're tired all the time, you have falling hair, you're gaining (or losing) weight for no reason, or you're having most or all of these symptoms, please read this. It might save your life, or at least improve it beyond imagining. I am not a doctor. I don't even play one on TV. I just want to tell this story and help if I can. And the story of my 60th birthday party(s), one month after starting thyroid therapy, is an example of the amazing recovery possible with the proper treatment. *
The following entry posted Feb 29, 08, soon after diagnosis
As we get older, things happen inside of us that we never expected in our younger years, and they're not always good things. But sometimes dark clouds really do have silver linings, and that's how I'm choosing to looking at this particular dark cloud.
For the past five years, I have had terrible bouts of tiredness. I don't mean the kind of tiredness where you just get a good night's sleep and that fixes it. I'm talking about a pervasive bone-weariness, a lethargy that at times makes the simplest activity seem like a major expenditure of energy.
We're all like little suns, atomic furnaces that burn fuel and emit heat and light, joy and sorrow, creativity and work, all the things that make us who we are. My tiredness was more profound than I may ever be able to describe. It was like being trapped in a black hole where the event-horizon was threatening to just swallow me up. I felt like I was living on a drab, sunless, joyless, heavy-gravity planet.
I'm a trooper! Somehow I managed to play concerts through it all, but there were times when, just before I walked on stage, I wanted to walk the other way and just leave the concert hall. If I had done that I would have surely been sued by the promoters. But I was getting to the point where I didn't much care. I was THAT tired.
I flew to Brecon, Wales, in Great Britain, to play a concert, and wisely allowed myself three days to rest before I played a one-hour concert. I slept almost every single minute of those three days. At one point, a good friend whom I'd not seen in years knocked at the hotel door. I opened the door and told her to "please go away." About all that I saw of Wales was the inside of the concert hall, the keys of the piano, and the ducks outside of my hotel room. At least that's all that I clearly remember.
(Proving that Murphy knew something about law, BBC TV decided to do a profile of me on the day of my concert, which was seen by millions of folks all over the world. You can watch that here ... I suppose it turned out OK for a lady that felt as old as Methuselah.)
I figured, at 60, that I was dying. "Strange," I thought, "that I should die so young, but I guess quality is better than quantity." And I'd console myself, noting that I'd made a slew of records and CDs, most of which I could live - or die - with, and that I've loved and been loved.
My hypothyroid treatment started Feb 19, 08
Then, last week, I went to my doctor for my regular checkup, and came back home and fell into what I later found out could've been my last night's sleep... it was as near to mexedema coma as I ever want to get... my partner literally saved my life, expending an incredible amount of time and energy just getting me to respond and finally reach a state of semi-consciousness. Everything had gone WHITE for me! All around me, as far as I could "see", there was nothing but white.
The next morning my doctor called, telling me to have someone go to the pharmacy for me immediately; that he'd called in a drug that I needed to start taking as soon as possible.
It turns out that I have hypothyroidism. Mine is not not a mild form. My thyroid is dead as a door-nail. And that means that my pituitary gland has been working overtime, trying to "wake up" my dead thyroid gland, without success.
It turns out that I've been walking around for almost five years with little-to-no thyroid activity. My thyroid was most likely cutting in and out, like a bad stereo speaker. Some days static, other days, nothing at all. The thyroid gland regulates every single function of your body, and you can't live without it: you go into a coma and die. Turns out that I did nearly go into that coma, but was awakened by my partner just in time. And my doctor FOUND it, just in time.
(I should mention that my doctor never really missed it. He lived and worked in a state in which I didn't live, so he'd call in the blood panel to a lab in my area. I had my testing done by lab technicians in California. THEY missed it, several times over.)
So now, every day for the rest of my life, I have to take a synthetic "bio-identical" version of the hormone that the thyroid gland is supposed to produce on it's own, something called Levothyroxin. Meanwhile, my thyroid itself is out of the game forever, over with, kaput.
Hello, Levothyroxin, goodbye, thyroid gland.
I've now been on Levothyroxin for fourteen days [2.29.08]. I sleep again. I wake up feeling rested. I answer the phone and people ask for Jessica because I sound so GOOD. I laugh again. I feel life in my body again. My hair has stopped falling out. I can taste food again. I can walk around without gloves on. My body is WARM. I'm losing the edema (water retention) and I'm walking the dog again.
I had been dealing with a whole laundry list of symptoms:
- Heart disease
- Cold intolerance
- Basal temperature of 96.5 or lower
- Weight gain
- Joint and muscle pain
- Thin, brittle fingernails
- Thinning, brittle hair
- Yellow skin on palms of hands, around eyes
- Slow speech
- Slow movements
- Slow thinking
- Dry flaky skin
- Puffy face, hands and feet
- Decreased taste and smell
- Thinning of outer half of eyebrows
- Overall swelling
- Muscle spasms and cramps
- Muscle atrophy
- Uncoordinated movement
- Joint stiffness
- Hair loss
- Appetite loss
- Early death
- The inability to deal with record producers
(That last may not respond to drug therapy, I am told)
What a horrible five years I've had. Being an optimist (I actually am, really really!) I made it through. But it's been hard to really give my best while dealing with such a formidable opponent as thyroid disease, and thyroid shutdown is a horrible experience.
As one friend wrote:
"Jessica! What a story! My heart aches to hear what you went through - and then the enormous discovery of what truly was the root of so much trouble. I was diagnosed as hypothyroid after my second child was born and have been taking Levothyroxin for 22 years. My case was detected very early and has been easy to manage. To hear your story not only makes my heart ache; I feel an ache in the marrow of my bones. No thyroid. You have been through hell. What a powerhouse you are to have survived these years. Hallelujah that you are on the way out of such a deep, dark hole, headed for the light. Love, B ___ "
And she is so right about that. The deep dark hole. It was that way, exactly. And I made it somehow, and I played really well most of the time. When one is so tired that just getting out of bed is a major miracle, it's a real accomplishment to walk out there in front of a hundred or a thousand people and play your heart out. But I did nothing else well. And I didn't know what was wrong, for five long years. That was the hell, not knowing. Just dying inside.
I wanted to write a little about this, because HERE'S WHAT HAPPENED AFTER I STARTED TO FEEL A LITTLE BIT BETTER:
I composed a letter, and I sent it to maybe forty or fifty of my best friends. I have a mailing list of thousands... you may be on it... but I sent this letter to only my dear friends. I may have missed a few, because this disease makes the neurons in your brain fire more slowly, it makes you forget things, and it makes you stumble and slur and feel dizzy and move slowly.
And, as their answers came back (and nearly everyone answered me almost immediately) I made a discovery. I found that out of the fifty emails I sent, maybe 80 percent were women, mostly in their forties, fifties, and sixties, and GET THIS, almost EVERY LAST ONE OF THEM (with two or three exceptions) were either on Levothyroxin for ZERO thyroid function, or were on a similar therapy for hypothyroidism of a milder form, where their thyroid hormone was really low!
So it's been going on all week, and it's like I'm running a clinic around here. I'm getting calls and emails, and we're all sharing experiences and we're all saying "wow, you too, huh?" Many of us were diagnosed only after years of misdiagnosis and tons of unnecessary tests.
Most of us were diagnosed late to one degree or another, and most of us consider those years of darkness and tiredness and misery our "lost years."
So the message here, the reason for this virtual orgy of personal self-disclosure is:
Get tested, and ask for a blood panel SPECIFICALLY directed at monitoring your free T3, T3, T4, and TSH levels, and a serum antibody test to check for Grave's Disease or Hashimoto's Thyroiditis. An elevated TSH (Thyroid Stimulating Hormone) level means that your pituitary gland (which controls your thyroid gland, which in turn controls every other organ in your body) is sending out stronger-than-usual messages to your thyroid, which, for reasons known only to it, is not doing the job. The pituitary gland is "flogging" your thyroid to please work, and your thyroid is just sitting there like a bump on a pickle.
So when the TSH is way up, the T3 and T4 (the thyroid hormone itself) is way low. Maybe it's not even there. And that's BAD NEWS for all systems in the body. That's why you can sleep through three alarm clocks and two wake-up calls, which I did on the road once, not too long ago.
The TSH panel is an important part of the test, but knowing the T4 levels only is not a reliable form of diagnosis - free T3, T3, T4, and TSH levels, plus a serum antibody test to check for Grave's Disease or Hashimoto's Thyroiditis is standard in most other more advanced countries. At present most doctors and hospitals use only a TSH test, and this is remarkably unreliable, considering the amount of research done and available at PubMed, NEJM, and other sites.
This disease strikes mostly women, but guys can get it too. The ratio is 10 (maybe even 20) to 1, but it's still worth doing a panel. Do a "google". And here are a few links to get you started if you think you may have suspiciously similar symptoms that bear checking out:
Towards the end of the tunnel, which I took to be the approaching end of my life, it got so dark and I got so tired that I was spending most days entirely in bed. I made music in my home studio, but the pace of my creativity had slowed to a crawl. An example of this is in how long it took me to make an album. Back in '96 I had made Higher Standards for Candid Records, and did the entire album in 3 hours of studio time. The budget (as for all jazz records) was abysmal, and studio time is expensive. My most recent album is very beautiful, and very fast in places. But it took me two months.
The up-side is that the music came out very clear and focused. I thought it was slow, but I just heard it slow. Now that I listen to it, it's faster in certain passages than I would have believed. I'm not a fan of speed for its own sake, but I am amazed that my art remained virtually unaffected. I believe it even benefited. This will take lots more self-assessment.
I can only say that, at this point, I believe it to be some of my best music. But it's very transparent and honest music, and I hear the broken places, the pain, and the darkness, in places that others may not notice.
Do I feel better now? Let's just say that the difference is beyond words. Anyone who has spoken with me in this last week knows it. Everyone's very happy for me. I'm just thrilled to have my life back and humbled to have such lovely, steadfast friends waiting for me, at the end of that long dark tunnel. Life is good again.
And today, only fourteen days into a new chapter of my life, I recorded my old composition "Little Dog Blues"... I waited and waited for my dog Angel to bark (as she sometimes does in the middle of some of my more-perfect creations) but no. Not a peep. So I recorded her and pasted her bark in, exactly where I wanted it. It's a simply raucous, hilarious recording, with time like a rock and some serious foot-stomping stride going on. At 3'05" it could be a hit! I sure could NOT have pulled that off just a few weeks ago!
And, if it sounds as good to me next week as it did today, it'll be on my NEXT album!
Now, at 3 months later, I know more. I know that while it's a manageable condition, it's a bear to live with sometimes. Some drugs work for some of us but not for others. Dosage levels are extrememly difficult to balance. Different doctors bring their own strong and often destructive prejudices to the table, by relying solely on TSH panels and T4 levels.
"T4 is automatically broken down into T3 by the body." Whose body, anyway? Anybody and everybody's body? What hubris.
"The TSH panel is the only panel worth taking." Wrong. It gives the doctor a great picture of what the pituitary is up to, but no idea at all of what the T3 and T4 levels in the blood might be.
"Other hormones have little to no effect on thyroid hormones." Utter lie. Estrogen can bind with T4 and render it inert, useless.
"The best way to treat thyroid disease is to either kill the gland with radioactive iodine or remove it surgically; that way the dosage can be clearly monitored and stabilized." The worst of the worst. Often, the thyroid that decides to lie dormant suddenly kicks in and begins to work again.
It's not a cake walk. I am so much better. Gee, it's 5am and I'm still writing.
But it's never "over". I am so glad to have a good doctor, lots of love and support, and a job that isn't a 9 to 5 sort. Now THAT would be hell for me!
The following entry posted June 17, 08, well into treatment
Hypothyroidism isn't as simple as I thought. There's more to it than being bone-tired all of the time. And the miracle drug called levothyroxine isn't such a miracle after all. I'm on Armour Thyroid now, as of today, and it's too soon to say what effect that will have, but I switched because I wasn't getting better and I wasn't staying better.
The first few weeks were good for me on levothyroxine. But the evenness of mood and the energy levels "wore off". Finally, I was pretty much back to where I had started. My "numbers" were OK (that is, the blood panels) but I felt very poorly, and my memory had big gaps in it. Words kept eluding me, and they still are doing so. Sadly, it's affected my ability to write well. Hopefully the new drug will restore my long-practiced writing style which, if given a chance to flourish again, could become as witty and revelatory as it once was.
[I'm saved by my piano, the glorious, miraculous, completely and utterly PERFECT instrument for me. I could never have chosen a better instrument, one so responsive and sonorous. Everyday I amble downstairs and play for hours. It's the first thing I do every day, and, on some days, it's very nearly the ONLY thing I do.]
So. Armour Thyroid contains not just T4, but T3 also. This is closer to what the human body should produce on its own. Some doctors have read the latest literature on Medscape, which indicates that Armour actually had the right idea all along. There was a time, not too long ago, when doctors were very reluctant to prescribe Armour (it's made from porcine thyroid glands) because it was felt that the batch consistency was wanting. Actually, this perception was the result of a multi-million dollar smear campaign by - who else - the main manufacturer of levothyroxine (Mylan Pharmaceuticals).
Big Pharma won out over the smaller company (Forest Pharmaceuticals) as the campaign was aimed at the physicians themselves. Most doctors are so busy trying to fit patients in and make the proper diagnoses that they have little time to read articles on Medscape. Mylan knew this and targeted their ads accordingly.
But... it turns out that evil Mylan was subject to an multi-million-dollar lawsuit, which it settled out of court. The lawsuit was brought as a class-action by many people whose lives and health were devastated or ended by - get this - batch inconsistency.
So that drug did not work for me, and obviously hasn't worked out for a lot of other folks, too. Armour has a good record for consistency, and can hopefully stay on the right side of the FDA, which increasingly makes its decisions based on lobbying interests, and not hard science.
I'll keep you updated on this issue. I am amazed at how many page hits this article received, and how many folks share my condition. It's beautiful how much people care about each other when there's some common ground, and I continue to receive enormous support and advice from fans, friends, and acquaintances.
Writing used to fly for me. Now it's a chore. Hopefully my quick wit and typing speed will return with full force, very soon. Meanwhile, I play, every day. This disease has, thankfully, NOT aversely affected my ability to play the piano. In fact, it seems to have increased my focus, my dynamic range, and my imagination. Ideas spring forth unbidden, and I am somehow ready and able to express them.
If the Armour impedes THAT ability, I'll go cold-turkey on everything!
More soon. JW, June 17, 08
The following entry posted June 23, 08: more about Armour Thyroid and my response to it:
It's been a good six days. I feel more present. My friends tell me, "Jessica, you're more present!" They say I smell better too. I sure feel better.
Synthroid (Levothyroxine) seemed to be a "sharp, edgy drug", kind of like doing cocaine. The energy had a false sense to it, as if it were empty. I felt empty after being on it for awhile. I'm praying that this won't happen with Armour. I am realizing that this is a serious health issue, and that I am very lucky to have such support... and such and amenable doctor.
I am having a little trouble with sleeping, and I sometimes seem to just purr with energy, but it's been years since I've purred, so that's a good thing. My playing is definitely benefiting.
At a recent small concert in Portland, I had quite a few folks tell me how healthy and well I looked. This was quite a change from the usual "gee, you look tired" refrain. And I played well, too. A few weird clunkers. As my friend Diane says, "you're not perfect, and that's why people love you so much." I hope she's right. I definitely am not perfect.
It'll be a few more weeks before I really know anything for sure, and five weeks until my next blood panel. I'm feeling optimistic about this. I've had quite a few friends who are on Armour tell me that I'll start to get better now. They were right about the drug itself; at least that's my perception so far. It's softer, more real. I feel more like ME. That's a good thing, too. - JW, June 23, 08
The following entry posted June 27, 08: more about Armour Thyroid
Two rather important links here for those of you who might be considering treatment with a T3 plus T4 drug as opposed to the usual T4-only treatment:
(Postscript: the FDA shut down Armour Thyroid production, and when they finally gave the drug clearance it had been modified beyond all recognition. It seems that it is no longer effective for many of us. The FDA and congressional lobbyists continue to receive enormous sums of money from the manufacturers of Synthroid. An estimated 2 million women have since died over the last several years. You may have to go to a compounding pharmacy, which I recommend, or try other out-of-country drugs from Thailand, Canada, or South America. JW, July 21, 2013)