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Tuesday, July 2, 2019
Tuesday, March 19, 2019
My Life and Medicine
My Life and Medicine, or:
A Series of Iatrogenic Disasters along the Road of Good Intentions
Joan Levin – Updated October, 2018 jdlevin@bright.net
Introduction: Right now I'm dealing with three painful and disabling vertebral compression fractures associated with a brief delay in receiving my semi-annual shot of Prolia (by Amgen), a drug intended to treat osteoporosis when nothing else seemed to help. While trying to figure out why this happened I stumbled across some articles linking thyroid supplementation with osteoporosis. This is a discussion of what may have happened to me. Some of this is conjectural and none of it is intended as medical advice. (You can read updates about this at www.JoansBackboneDisaster.com).
Chapter 1. Around 1945.
I’m nine years old, and out of school half the year with colds, sore throats, laryngitis and “swollen glands” in my neck. Like many other Chicago kids of that day, I’m taken to Michael Reese Hospital in Chicago for the amazing new X-ray treatments to address this.
Chapter 2. 1950.
I’m 14, and sprouting what looks like a boy’s Adams apple. Whisked off to the Mayo Clinic where (though not told why), I’m operated for thyroid cancer. (In later years they would have removed the whole thyroid, but at that time they just removed the “affected” parts, so about 1/3 of my thyroid remained.)
Chapter 3. 1951
Back in Chicago our family doctor hands me an unmarked bottle of pills and says: “You will take one every day for the rest of your life.”
“What are they?” I ask.
“You don’t need to know,” he replies.
(I still had not been told the nature of my condition.)
“I won’t take pills if I don’t know what they are for,” I tell him.
“Then get out of my office!” yells the doctor. (I am not making this up!)
I take the pills home and throw them down the toilet. No more was ever said about them! (I guess I was not an easy child!)
Chapter 4. 1964
At a prenatal checkup with what would have been our second child, a doctor asks about the scar on my neck. I tell him I’m not sure so we get records from Mayo Clinic and now I know the story.
“You must have your thyroid removed immediately and be totally irradiated!” says the doctor.
“But what about the baby?” I ask.
“It doesn’t matter” he answers.
I miscarried that night and considered it providential.
And I never had the radical treatment he suggested.
I had another baby uneventfully two years later. He's fine.
Chapter 5. 1981.
I’m living in Washington D.C., working as a lawyer with a public interest health organization. I ask an M.D. colleague, an internist, what those pills may have been back in 1951. She says they were likely thyroid hormone, thought (at that time) to prevent cancer recurrence. (During all this time, without those pills, my thyroid function was normal).
Chapter 6. 2004 (a) .
Now back in Chicago, yet another doc tells me once again during a checkup that I need to have my remaining thyroid removed and be completely irradiated.
“What is your diagnosis to justify this?” I ask.
“Your history,” he answers.
I didn’t think that “history” was a much of a “diagnosis” so I left, and made an date with the Mayo Clinic for a second opinion.
Chapter 7. 2004 (b).
At the Mayo Clinic I’m assigned to their doc who sees the “Michael Reese"kids. (Yes this debacle was that famous).
“You don’t have cancer,” he says after several days of testing, “and your thyroid function is normal, but your thyroid remnant is growing all ‘gnarly’ (his word) around your trachea and elsewhere. You need a thyroid supplement to give it a rest.”
I agreed to do that and have done so ever since. 100 mcg/day.
(mcg=micrograms). My thyroid test have stayed pretty much the same as they did before I took the thyroid supplement -- it's just that the thyroid remnant doesn't continue to grow, as far as I know.
(I routinely put the above matters on medical history forms. No one ever asks me about it however!)
Chapter 8: Osteoporosis
During most of these years – especially since menopause -- I have been dealing with osteopenia and/or osteoporosis. Close attention to diet and and exercise did not help, nor did various drugs. My DEXA “T scores” kept declining.
In 2012 a bone endocrinologist at the University of Chicago suggested Prolia, a monoclonal antibody manufactured by Amgen. I faithfully kept these 6 month appointments, and the drug seemed to slow -- though did not stop -- the bone loss.
(Prolia does not claim to increase bone density, but rather, claims to stop bone loss.)
Chapter 9: The Disastrous Delay!
In January 2018 I was told that my scheduled appointment at the University of Chicago when I would see the doctor and have my semi-annual Prolia shot would have to be changed because the doctor was leaving and the new doctor could not see me until May.
Late in February 2018, I began having severe back pain. I did not connect it with Prolia and saw my internist who sent me for an MRI which revealed showed three vertebral fractures (T11, T12 and L3).
Since then I have been in a great deal of pain, and am likely be permanently disabled to a yet unknown degree.
At this point the doctors who prescribed Prolia (and Amgen as well) have nothing to offer except more drugs that look quite dangerous. I have been left pretty much to my own devices to work out a rehabilitation plan to get some mobility back.
And there seems to be no safe way to get off of Prolia either – which I would like to do because recent information about this drug includes more issues (such as immune system problems) that I wish to avoid.
Chapter 10: My Own Thoughts on this Situation:
By 2004 The upper respiratory infections I had since childhood (and no, those x-ray treatments back in the '40's didn't help) had become much worse -- sometimes morphing into pneumonia. I mention it here because I think if their likely cause had been understood back in the '40's I might not have been exposed to the X-ray treatments which lead to cancer and the partial thyroidectomy necessitating the use of a thyroid supplement.
And during those years when my osteoporosis was worsening, I didn’t relate that at all to the thyroid issue. And my thyroid function was always normal.
(It was frustrating, however, to fill out medical forms asking what drugs I’m taking and dutifully writing “100 mcg. Levothyroxine” and having someone else write “hypothyroid” in my record. I would try to explain that this “supplement” was to stop my thyroid from working so hard and growing so weirdly. But they often kept on writing “hypothyroid” on my records anyway!)
But now I don’t know if the levothyroxine might not have been negatively affecting my bones. I did some searching (see below) but cannot tell if the studies I found apply to me.
(Between the "X-Ray Debacle of 1945" and the "Prolia Disaster of 2018", it seems to me that the worst things that have happened to me in my otherwise generally healthy life have been iatrogenic! )
But even before that: What brought me to those X-Ray machines back around 1945? Why was I having those frequent bouts of respiratory illness?
Chapter 11: Addressing those URI's
Those unending colds and sore throats and swollen glands that prompted the X-Ray treatment around 1944 never stopped, even after this treatment. I was always in some kind of upper respiratory distress through my teens. And in my adult years this got worse and I was plagued with frequent bouts of severe laryngitis, bronchitis and even pneumonia.
In the late ‘90s when I was back from Washington and living in Chicago again I asked my chiropractor, Dr. Anne Gordon, if she had any ideas about this unending parade of URIs necessitating antibiotic treatment.
She sent me to a colleague chiropractor, Dr. Tom O’Bryan (who now is in California but was then in the Chicago area) who sent my blood off to an immunologist at University of California at San Diego, and came back with the results that I was highly sensitive to GLUTEN (found in most breads) and CASEIN (one of the two major proteins in milk products).
I loved bread and cheese but did a trial without them or anything else with gluten or casein. After a few weeks the change was dramatic. No more need for Excedrin every morning for the daily sinus headaches, no more constant throat clearing, and hardly any more cold or sore throats – and these never turned into bronchitis or pneumonia again.
The theory here was that the constant exposure to these allergens was leaving me with a permanent runny nose and throat with mucus creating good medium for infections. Whether this was so or not, the change was so dramatic that I’ve stayed away from gluten and casein ever since. The few times I’ve “rechallenged” this have generally put me back where I was, so I just avoid them. Otherwise, respiratory infections are rare for me.
I cannot help but think that had anyone known this back in 1945 when I was having so much upper respiratory illness maybe my life would be quite different now!
Chapter 12. My Question: Did the unaddressed gluten/casein sensitivities contribute to the constant URI’s -> X-ray treatments -> leading to thyroid cancer -> a partial thyroidectomy necessitating thyroid supplementation -> exacerbating bone loss?
I cannot help but think that had anyone known this back in 1945 when I was having so much upper respiratory illness maybe my life would be quite different now!
And how remarkable that the worst health disasters of my life were brought on by "conventional" medical treatment, while the help for them has come from oft maligned “alternative” sources.
And now I fear I may be in the grip of yet another one of these situations with the current Prolia disaster. When will I learn?
I feel like a fish trapped in a gill net -- thrashing around but with no help in sight!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Some References: (N.B., these links may need to be copied and pasted into a browser if they don’t work from here).
I. About the Michael Reese X-Ray Disaster
I’m probably among the last of the “Michael Reese X-Ray” kids still standing, so this might be of interest. I believe there may be a project at University of Illinois about this debacle but I ‘m not sure.
Here are just a few of the things that came up in a search for “Michael Reese X Ray” and Thyroid. There’s much more online.
Searching on Michael Reese X-rays thyroid cancer – just a few of many online!
II. Thyroid Medication and Osteoporosis.
Again just a sample, and I don’t know if any of these apply to me.
TSH suppression and Osteoporosis
From “Healio” online medical news:
In the above Healio article, discussing the talk by one of the authors in the following Medline cites
“TSH suppression was the most powerful independent predictor of osteoporosis,
conferring a nearly fourfold risk of development of postoperative osteoporosis,” Wang
said. “The impact on TSH on osteoporosis risk was even higher on univariate analysis,
increasing the HR from almost 3.5 to 4.3. This suggests that there is possibly a
synergistic effect between older age and TSH suppression.”
————————————————
From NCBI
Select item 25386760
1.
Wang LY, Smith AW, Palmer FL, Tuttle RM, Mahrous A, Nixon IJ, Patel SG, Ganly I, Fagin JA, Boucai L.
Thyroid. 2015 Mar;25(3):300-7. doi: 10.1089/thy.2014.0287. Epub 2014 Dec 16.
PMID: 25386760
Select item 15278189
2.
Chen CH, Chen JF, Yang BY, Liu RT, Tung SC, Chien WY, Lu YC, Kuo MC, Hsieh CJ, Wang PW.
J Formos Med Assoc. 2004 Jun;103(6):442-7.
PMID: 15278189
—————————————
Wondering about Algae Cal.
An Algae Cal rep sent me this link August 8 2018 (along with three studies on Algae Cal elsewhere)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tuesday, February 19, 2019
Monday, July 16, 2018
Calendar Girl; A Yiddish Adaptation
Kalendar Meydl -- Transliterated
Mit yanuar heybt zikh on dos yor,
In februar vern mir a por,
In marts baym seder zitsn mir tsuzamen,
In april iz mayn harts shoyn in flamen,
Oy, oy, kh’hob dikh lib azoy,
Ikh vil, ikh vil, ikh vil az du zolst zayn mayn froy,
Yedn tog, yedn tog fun a gants yor!
In may shaynt di zun nor af dir.
In yuni graduirn mir.
In yuli bistu ofitsiel mayn kale.
In oygust bakstu mir op a khale.
Oy, oy, kh’hob dikh lib azoy,
Ikh ken zikh nit dervartn biz du vest zayn mayn froy,
Yedn tog, yedn tog fun a gants yor.
In september epl mit honik lekn,
In oktober in der suke an esrog shmekn.
In november hern mir nit oyf tsu kveln.
In detsember veln mir a khupe shteln.
Oy, oy, kh’hob dikh lib azoy,
Ikh bin azoy tsufridn vos du bist shoyn mayn froy,
Yedn tog, yedn tog fun a gants yor!
Calendar Girl in Yiddish -- Translated into English
In January the year begins,
In February, we’re a couple,
In March we sit together at the seder,
In April my heart is aflame!
Oy, oy, oy, I love you so much,
I want you to be my wife!
Every day of the whole year!
In May the sun shines only on you,
In June we graduate,
In July you officially become my betrothed,
In August you bake me a challah!
Oy, oy, oy, I love you so much!
I can’t wait for you to be my wife!
Every day of the whole year!
In September we taste apples and honey!
In October we sniff an esrog in the sukkah!
In November we don’t stop kvelling,
In December we’ll put up a khupe!
Oy, oy, oy, I love you so much!
I’m so happy that you are already my wife!
Every day of the whole year!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Adapted from Neil Sedaka's 1960's hit song Calendar Girl
by Khane Faygl Turtletaub
Sung in Yiddish by Joan Levin at a Yiddish Vokh many years ago!
Wednesday, July 4, 2018
Homer Smith, Urine and Modern Warfare
Poem I wrote published in Perspectives in Biology and Medicine
32 (4), Summer 1989 pp. 603-604
HOMER SMITH, URINE, AND MODERN WARFARE
JOAN D. LEVIN*
Selma, Alabama, was twice prominent in world history, once in this
century for being the site of a major civil rights battle, and once, a
century earlier, during the battle between the states.
The earlier events were immortalized by Homer Smith, in his essay De
Urina (1, pp. 127-147]. Smith was not only the most brilliant renal physiologist of the century, but also a distinguished novelist and historian as well. The relevant passages of his historical (and historic) essay follow:
Though phosphate is important in the usefulness of urine as fertilizer, the nitrogen of its urea, ammonia, and other compounds is of no less significance inthis respect, and urine as a source of nitrogen supplies us with an heroic example of what man in his ingenuity, when hard pressed, can achieve. I refer to the sad plight of Selma, Alabama, during the Civil War. To prepare saltpetre for the manufacture of gunpowder, the Confederates had to resort to all sorts of devices
such as leaching the earth from old smokehouses, barns, and caves, and making artificial beds of all kinds of nitrogenous refuse, having agents for this purpose in every town and city. The agent at Selma was particularly energetic and enthusiastic, and advertised in the newspaper as follows:
"The Ladies of Selma are respectfully requested to preserve the chamber lye collected about the premises for the purpose of making nitre. A barrel will be sent around daily to collect it.
John Harrolson, Agent Nitre Mining Bureau"
This came to the attention of a poet in the Confederate Army who responded lyrically as follows:
"HE ADVERTISED FOR CHAMBER LYE
John Harrolson[ John Harrolson!
You are a wretched creature.
You've added to this bloody war a new and awful feature.
You'd have us think while every man is bound to be a fighter,
The ladies, bless the dears, should save their P for nitre.
John Harrolson! John Harrolson! Where did you get the
notion,
To send your barrel 'round the town to gather up the lotion?
We thought the girls had work enough making shirts and
kissing,
But you have put the pretty dears to patriotic pissing.
John Harrolson! John Harrolson! Do pray invent a neater
And somewhat more modest mode of making your saltpetre;
For 'tis an awful idea, John, gunpowdery and cranky,
That when a lady lifts her shift she's killing off a Yankee."
This poem was printed on toilet paper and circulated all over the
Confederacy, and a copy was smuggled across the line to fall into the hand of an anonymous Yankee poet who replied:
"THE YANKEE'S VIEW OF IT
John Harrolson! John Harrolson! We've read in song and story
How women's tears through all the years have moistened fields
of glory,
But never was it told before amid such scenes of slaughter
Your Southern beauties dried their tears and went to making
water.
No wonder that your boys are brave, who couldn't be a fighter
If every time he fired his gun, he used his sweetheart's nitre;
And vice-versa, what would make a Yankee soldier sadder
Than dodging bullets fired from a pretty woman's bladder?
They say there was a subtle smell that lingered in the powder,
And as the smoke grew thicker and the din of battle louder,
That there was found to this compound one serious objection,
No soldier boy could sniff it without having an erection."
To these two short, poignant poems, one from the southerner's point
of view and one from the Yankee's, I have added a third version, bringing this art form up-to-date for the 1980s.
URINE AND NATIONAL DEFENSE: A NEW VIEWPOINT FOR THE EVE OF THE TWENTY-FIRST CENTURY
Oh Homer Smith, dear Homer Smith, it makes a maiden
blush,
To think that national defense could turn upon a flush.
But that's enough of Civil War in ancient, dog-eared rhymes,
We need a new approach to meet the needs of modern
times!
Our patriotic fast food joints might realize these hopes,
And spice their wares judiciously with radioisotopes,
The customers could eat their fill, and then each loyal feeder
Would soon become a urinary radioactive breeder!
And every little child from San Diego up to Maine,
Would give to national defense what once went down the
drain.
And even Ron and Nancy could give of what they got,
And donate all the contents of the Presidential Pot.
Forget about cocaine and hash, they'll fill us with ennui,
There'll soon be better uses for each worker's drop of pee,
And all those silly drug tests, they soon will be forgot.
No more of asking "Are you high?" but rather, "Are you
hot?"
Oh Homer Smith, dear Homer Smith, behold a modern
sight,
The nation's urine harnessed for her military might.
And we can fry the birds on high, and fishes in the sea,
With fifty million megatons of radioactive pee!
REFERENCE:
1. CHASIS,H ., and GOLDRINGW, . (eds.). Homer William Smith: His Scientific and Literary Achievements. New York: New York University Press, 1965. (Reprinted from Kaiser Foundation Med. Bull. 6:1, 1958))
The author wishes to express her appreciation to Dr. Novera Herbert Spector of the National Institutes of Health for directing her attention to the classic Homer Smith work cited herein.
* Address: 2114 South Tower, 4515 Willard Avenue, Chevy Chase, Maryland 20815.
© 1989 by The University of Chicago. All rights reserved.
###
Sunday, November 12, 2017
What to do with your IMUSA Mini Casserole
What to do with your IMUSA Six Inch Mini Casserole? So many things! While I'm mostly plant based, I do enjoy an occasional egg, and here are some of my faves!
Fun with a Mini-Pan
This pan’s non-stick surface will stay that way if you clean gently and don’t use metal utensils.
Here are some easy things you should know how to make.
ALWAYS START WITH GOOD INGREDIENTS! ORGANIC, PASTURE RAISED, LOCAL.
OK TO BUY LESS/ PAY MORE - YOUR HEALTH & ENVIRONMENT WILL THANK YOU!
ALWAYS START WITH GOOD INGREDIENTS! ORGANIC, PASTURE RAISED, LOCAL.
OK TO BUY LESS/ PAY MORE - YOUR HEALTH & ENVIRONMENT WILL THANK YOU!
Eggs: Eat sparingly and buy organic, preferably cage free or pastured, ideally from local farmers. Happier hens; happier eggs. Eat fewer and spend a little more; it’s worth it!
Salt: Use sparingly. A little grinder bottle of sea salt from supermarket lasts forever.
Pepper: Find the little grinder bottles of black pepper at the supermarket.
Butter: In SMALL amounts. Buy 1/4 lb. (or small tub) of the best one! Pay more, buy less!
Tortillas: Buy fresh, plain, non-GMO. Use quickly and keep in fridge.
(In Chicago area buy El Milagro fresh corn tortillas if you can!)
See: http://wfpbn.blogspot.com/2016/09/corn-tortillas-gluten-free-go-to.html
(In Chicago area buy El Milagro fresh corn tortillas if you can!)
See: http://wfpbn.blogspot.com/2016/09/corn-tortillas-gluten-free-go-to.html
Bread: Pay a little more to get organic whole grain.
Here are some fun things you can make:
1. Scrambled Egg. Gently break an egg into a small dish or cup and beat it gently with a fork. Add a few teaspoonsful of milk and a small grind of sea salt.
Put a TINY bit of butter in the pan and turn stove to medium low.
When butter starts to melt pour in the egg mix and gently stir it as the lower level begins to cook.
Fold it over a bit if you wish.
Remove from heat when no longer runny. Grind on a little salt and pepper for a nice scrambled egg.
When butter starts to melt pour in the egg mix and gently stir it as the lower level begins to cook.
Fold it over a bit if you wish.
Remove from heat when no longer runny. Grind on a little salt and pepper for a nice scrambled egg.
Variation: stir in fine chopped leftovers for a quick mini-omlette!
2. Egg(s) on Tortilla. Put a little butter in a pan on low medium heat, and lay a fresh tortillia in the pan.
Turn with a bit more butter.
As tortilla warms, gently break an egg on it and cover.
WATCH CAREFULLY! Look under the lid frequently. When the white is mostly congealed and BEFORE the yolk turns hard, slide it onto a plate.
Dip some of the tortilla into the runny yolk of the egg.
(If the yolk gets hard, eat it anyway and watch it more carefully next time!)
Turn with a bit more butter.
As tortilla warms, gently break an egg on it and cover.
WATCH CAREFULLY! Look under the lid frequently. When the white is mostly congealed and BEFORE the yolk turns hard, slide it onto a plate.
Dip some of the tortilla into the runny yolk of the egg.
(If the yolk gets hard, eat it anyway and watch it more carefully next time!)
3. Egg in the Hole. Lightly butter a slice of bread on both sides. With a knife, carefully cut a hole in the middle of the bread, a little less than 2 inches in diameter.
Take the circle out and cut in half.
Put the bread with the hole in the pan, with the little “hole” pieces on each side.
Take the circle out and cut in half.
Put the bread with the hole in the pan, with the little “hole” pieces on each side.
Carefully break an egg in the hole.
The yolk should be in the hole and the white will be under and on top of the toast.
The yolk should be in the hole and the white will be under and on top of the toast.
Cook at medium low heat. If you cover it you probably won’t need to flip it. Just watch to see that the yolk stays soft. Or, if uncovered, flip it over when the bottom cooks, and cook for less than a minute more.
4. French Toast. Beat an egg gently with a fork mixed with a few teaspoons of milk.
Soak a piece of bread in this mixture.
Warm a SMALL bit of butter in a pan.
Put the egg-soaked bread in the pan and cook on medium for a SHORT time!
Flip it once to cook the other side.
Soak a piece of bread in this mixture.
Warm a SMALL bit of butter in a pan.
Put the egg-soaked bread in the pan and cook on medium for a SHORT time!
Flip it once to cook the other side.
Serve with a little real maple syrup or cinnamon and sugar.
See lots more easy, healthful dishes at :http://wfpbn.blogspot.com
See lots more easy, healthful dishes at :http://wfpbn.blogspot.com
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