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!
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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.”
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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
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Wondering about Algae Cal.
An Algae Cal rep sent me this link August 8 2018 (along with three studies on Algae Cal elsewhere)
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