On 16 June 2023, I bought my first DEXA scan. I used to be 57. Three hours later, a rogue driver plowed his automobile into mine and shattered my wrist in three locations.
Fifty-seven is comparatively younger for a DEXA – or dual-energy x-ray absorptiometry – scan, which measures bone density, or the quantity of calcium and minerals in your bones. The CDC recommends them for ladies 65 and over, however whereas interviewing Joanna Strober, CEO of Midi Well being, a digital care clinic for these in perimenopause and menopause, she had urged me to get one sooner. Strober had turn out to be alarmed by what number of of their fiftysomething sufferers had been discovering that they’d the bones of an octogenarian.
The outcomes of my DEXA scan arrived in my inbox per week after my automobile crash: I had full-blown osteoporosis.
I used to be nonetheless recovering from a number of accidents, so the prognosis took a again seat. I used to be additionally below the impression – due to my age, ignorance and the invisible, pain-free pathogenesis of osteoporosis – that lack of bone mass was much less of an instantaneous risk to my well being and wellbeing than my seen accidents. However, in truth, my osteoporosis had made me extra prone to that damaged wrist. With out intervention, osteoporotic bones merely deteriorate and develop more and more extra brittle with age. In addition they take longer to heal from fractures.
I can attest to that: fifteen months later, it nonetheless hurts to carry a pitcher of water.
Osteoporosis comes from osteo (from ostéon, Greek for bone) and poros (Greek for pore or passage). It describes simply that: a hollowing out and discount of bone mass such that the tiny holes that naturally happen in our bones widen right into a gaping, irregular lattice. Osteoporosis happens predominantly in postmenopausal girls. A girl in her 50s has a 14% probability of getting it. By age 80, she has a 70% probability.
It begins when the creation of recent bone can not sustain with the lack of previous bone. These hollowed-out bones are much more susceptible to breakage, notably within the hip, backbone, and, sure, wrist. The survival fee for ladies, following a hip fracture, is worse than most cancers: half can be lifeless in 5 years. Sure, males get osteoporosis, too, however the percentages are a lot decrease. A crude estimate for males over 50 is 4.2%, and authorities don’t advocate routine bone density testing, both for males or for ladies my age.
But when I’ve discovered something over the course of my work reporting on girls’s well being, it’s that the majority of what we’ve been advised usually seems to be improper, and none of it has been sufficiently studied, if in any respect. Unsurprisingly, making an attempt to determine tips on how to deal with my osteoporosis has solely confirmed this.
I had a number of threat components for osteoporosis: small physique body (5ft 2in, skinny), household historical past (together with a fantastic aunt who died from a damaged hip), ethnicity (white; Asians are additionally extra susceptible) and a previous historical past of fractures. So my main care supplier had agreed it couldn’t harm to get a DEXA scan at 57 as a baseline. At my annual bodily, my vitamin D ranges had been under regular – one other pink flag. My gynecologist additionally thought it a good suggestion and ordered the scan, which took three months to schedule.
The ensuing prognosis of full-blown osteoporosis shocked me. I’m an lively girl in good condition for my age. I don’t smoke or drink. I eat a balanced eating regimen. I do yoga twice weekly, experience my bike and stroll 10,000 steps each day. But my DEXA outcomes had been just like these of an 80-year-old girl.
DEXA scan outcomes embody T-score numbers, which point out what number of normal deviation items under the imply the topic’s bones have deteriorated in three key locations for breakage: lumbar backbone, femoral neck and hip. The imply is 0, for a wholesome younger individual with robust bones. Any rating between -1 and 0 is taken into account wholesome. Scores from -1 to -2.5 level to osteopenia, which is much less a medical prognosis and extra a sign that bone mass loss has begun. Any rating under -2.5 signifies osteoporosis.
My hip T-score was -2, however my lumbar backbone T-score was -3.2; my left femoral neck was -2.7. “The affected person has Osteoporosis lumbar backbone, left femoral neck,” the radiologist wrote in my report. “Affected person fracture threat is elevated.”
After recovering from the crash, I set out in the hunt for solutions. However even I, a lady who writes about girls’s well being, had no concept which specialist to contact. An orthopedist? A rheumatologist? An endocrinologist? A gerontologist? Some mixture of all 4?
The consensus amongst buddies, household and Google was to hunt out an endocrinologist. Endocrinologists deal with illnesses of hormonal imbalance. Osteoporosis, I used to be shocked to be taught, is a hormone-related illness – a drop in estrogen or an overactive thyroid, parathyroid or adrenal gland can all weaken bones.
However the sole endocrinologist in community for my insurance coverage who was taking new sufferers didn’t have an appointment for one more six months.
Whereas I waited, I scheduled a Zoom with Dr Mary O’Connor, an orthopedic surgeon I’d beforehand interviewed for the launch of her guide, Taking Care of You: The Empowered Lady’s Information to Higher Well being. At her urging, I added a day by day 2000 IU Vitamin D3 complement and upped my consumption of calcium-rich meals. “If you happen to don’t have satisfactory vitamin D3,” she defined, “you can’t soak up the calcium that you just eat.” She additionally urged lifting weights, so I purchased some dumbbells and located a 30-minute on-line exercise I truly appreciated.
Whereas researching specialists, I observed that many rheumatologists included osteoporosis as an space of experience. They largely deal with connective tissue problems, however I figured they may at the least do the bloodwork I wanted.
Dr Lauren Wong, a rheumatologist from NYU Langone, a type of uncommon physicians who treats you as an equal, ordered a ton of that bloodwork. At my follow-up, she had some solutions. “You may have hyperparathyroidism,” she advised me: my PTH, or parathyroid hormone, ranges had come again unnaturally excessive. Parathyroid hormone, she defined, regulates our calcium ranges, and an excessive amount of parathyroid hormone can contribute to osteoporosis by triggering the launch of calcium from bone shops. Wong agreed I wanted to see an endocrinologist and presumably a parathyroid surgeon after that.
“Hyperpara … what?” I’d by no means heard of this hard-to-pronounce illness.
My endocrinology appointment was nonetheless a number of months away – god bless America – so I sought the recommendation of Dr Babak Larian, a parathyroid surgeon in LA with a superb YouTube channel about hyperparathyroidism. Over Zoom, Larian advised me he thinks it’s completely ridiculous that girls on this nation are suggested to get DEXA scans at 65, on condition that menopause begins in our late 40s or early 50s. “I feel 50 needs to be the usual,” he mentioned.
Larian additionally defined that we now have extraordinarily poor statistics on the prevalence of hyperparathyroidism within the US. “We’re up to now off the mark,” he mentioned, “that I don’t even know the place to start out the dialog.” Moreover, “as a result of it is a illness primarily of girls, they’re [often] not identified”.
The Endocrine Society states that the incidence of main hyperparathyroidism within the US is someplace between 0.1% and 0.7%; girls and African Individuals are extra susceptible to it. Nevertheless, a current retroactive survey in Canada discovered that 5% of Canada’s inhabitants have some type of hyperparathyroidism. Larian believes hyperparathyroidism might be triggered by menopause, and thus that greater than 5% of menopausal girls have it. However they’re utterly unaware of this as a result of its signs – reminiscent of fatigue, muscle weak spot, melancholy, reminiscence issues – mimic these of menopause, and first care medical doctors don’t routinely examine girls’s blood for prime ranges of PTH.
I redoubled my efforts to seek out an endocrinologist who might see me sooner and as soon as once more failed. However then I got here down with one other UTI – an annoyingly frequent occasion, due to genitourinary syndrome of menopause, although I’ve far fewer now due to vaginal estrogen – and my urologist simply occurred to know a younger endocrinologist who was taking over new sufferers. A breakthrough!
The endocrinologist confirmed my hyperparathyroidism prognosis. So she ordered extra scans and exams and requested me to hunt out a parathyroid surgeon or two to see if I had an adenoma – a non-cancerous progress on the parathyroid gland and the hallmark of main hyperparathyroidism – which might then should be eliminated.
I consulted with two surgeons, neither of whom discovered an adenoma on a scan, so I didn’t want surgical procedure. As a substitute, they concluded that I had secondary hyperparathyroidism, introduced on by a scarcity of vitamin D.
Attending to the underside of my osteoporosis was shortly turning into a full-time job. By no means thoughts all of the visits themselves – even discovering the correct medical doctors, who had been in-network, might take hours upon hours of analysis. At this level, I’d both seen in individual or interviewed 10 medical doctors in complete.
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OK, nice, I assumed. I do know why I’ve osteoporosis at 57. Now what do I do about it?
Fortunately, I used to be already on observe. In 2022, I’d began taking estrogen, which the British Menopause Society calls “the remedy of selection for osteoporosis prevention”. The North American Menopause Society’s current 2022 place paper on hormone remedy additionally states that estrogen prevents bone loss and reduces fracture threat.
In a perfect world, I’d have been prescribed estrogen the minute I had my uterus eliminated in 2012 for one more medical challenge. However again then, HRT was not the usual of look after any girl, with or with out a uterus, because it was nonetheless being falsely demonized as inflicting breast most cancers. May the 10-year hole between my hysterectomy and graduation of hormone remedy have contributed to my osteoporosis? In accordance with numerous medical doctors I consulted, fairly presumably, sure.
In the meantime, the pharmaceutical trade affords no scarcity of medicine for folks with osteoporosis – as medical doctors, buddies and family members readily jogged my memory – however the deeper I dug into each, the much less I used to be certain I wished any of them. Bisphosphonates like Fosomax, usually the first drug of selection following an osteoporosis prognosis, inhibit bone resorption and improve bone mass density. However there isn’t a lot knowledge on long-term use in youthful sufferers like me. Plus, in uncommon cases, they’ve been proven to trigger osteonecrosis of the jaw (ONJ) and atypical femur fractures – precisely the damage I used to be making an attempt to keep away from.
Prolia injections goal a particular molecule that bone-removing cells want as a way to work, however additionally they make another prone to infections. With my recurring UTIs and concomitant antibiotic resistance, this, too, was a no go. Additionally, when you begin with Prolia, it’s a must to maintain taking it twice a yr, and the price, relying on one’s insurance coverage and eligibility for coupons, might be prohibitive. Forteo, an anabolic that could be a artificial type of parathyroid hormone, stimulates the formation of recent bone and in addition boosts bone mineral density, however is contraindicated for folks with hypercalcemic problems reminiscent of hyperparathyroidism. Furthermore, considered one of its unwanted effects is dizziness, and I’m a lifelong fainter with low blood stress and orthostatic hypotension – so in all probability not a fantastic concept if I wished to keep away from falling and breaking extra bones.
I advised my endocrinologist I wanted to consider all of this. Within the meantime, I requested her to examine my PTH ranges once more. Lo and behold, Dr O’Connor’s vitamin D3 routine had labored! My PTH ranges are actually within the regular vary, and my hyperparathyroidism is gone.
What impact did this have on my skeleton? My endocrinologist thought it will be worthwhile to repeat the DEXA scan on the similar workplace the place I bought the primary one. Alas, their subsequent appointment isn’t till 4 months from now – a full 18 months after my first scan. In New York Metropolis, getting the healthcare I would like needs to be straightforward. It isn’t.
“What if I don’t take something?” I mentioned to my endocrinologist. “What are my dangers if I proceed lifting weights to construct energy and muscle, taking vitamin D and estrogen, consuming calcium wealthy meals and exercising day by day?”
Whether or not to take medication, she mentioned, was finally my selection, however my osteoporosis was severe. “Even a sneeze,” she mentioned, “can break your backbone.”
Nice, I assumed. I’ll attempt to keep away from sneezing.
Totally confused, I spoke with oncologist Dr Avrum Bluming, co-author of Estrogen Issues. He calls osteoporosis a illness of decreased bone resilience: the flexibility of bone to stretch with out breaking. Medication like Fosomax and Prolia deal with bone density, he mentioned, however not bone resilience.
Right here, once more, estrogen was key. “Bone mineral density isn’t a fantastic check for osteoporosis, which is a scarcity of bone elasticity,” he mentioned. Bone mineral density “doesn’t correlate very properly with threat of fracture. What we do know is estrogen does delay the flexibility of bone collagen fibers to stay versatile or elastic, and it decreases the chance of great fracture, particularly hip fracture, by as much as 50%.”
I nonetheless wasn’t certain what to do about remedy or the place to show to seek out out. Ought to I attempt to discover a totally different endocrinologist? I referred to as my daughter, who’s in her fourth yr of med college, however she had no new insights from her research.
Then, this summer time, I learn a revelatory new examine in Nature co-authored by Dr Muriel Babey, an endocrinologist and researcher at UCSF. Its headline instantly caught my eye: “A maternal mind hormone that builds bone.” Within the examine, Babey and her colleagues lastly reply the query that has been puzzling endocrinologists for over a century: how do the bones of breastfeeding girls keep robust and resilient when they’re shedding a lot calcium to exploit manufacturing? In principle, a lactating mom ought to have severely osteoporotic bones. (In uncommon cases, referred to as being pregnant and lactation-associated osteoporosis (PLO), they do.)
The reply lies in a newly found hormone: CCN3, the so-called Maternal Mind Hormone, which the researchers discovered nearly accidentally by finding out the hormones of feminine mice, a uncommon prevalence as male mice are the norm for many animal research.
When Babey’s crew gave CCN3 to feminine mice who had been very previous or missing in estrogen, it doubled the mice’s bone mass and, critically, their bones had been extra resilient and broke much less simply. CCN3 has not but been examined in people, but when it really works on girls the best way it really works in feminine mice, Maternal Mind Hormone may very well be the lacking magic bullet when it comes to osteoporosis remedy.
I contacted Babey to ask if and when the hormone would possibly come to market. “For pharmaceutical software,” she mentioned, “the timeline is often round 5 to 10 years”. Too late for me, alas, however it does give me hope that my daughter may need higher choices if she is identified.
I gave Babey a quick historical past of my osteoporosis journey and the varied therapies I’d thought of. “What if I do nothing?” I mentioned.
“I might positively get one other baseline first earlier than even deciding if anabolic remedy can be obligatory,” she mentioned. She additionally urged I get a mini-trampoline to construct stability and energy, and to strive train applications designed for folks with osteoporosis. There’s extraordinarily restricted knowledge, she burdened, on the advantages of so-called rebound train, however one examine did present a rise in bone mass in premenopausal girls.
Reader, I purchased a mini-trampoline. It will probably’t harm.
In the meantime, I’m nonetheless taking estrogen and incessantly calling my radiologist’s workplace to get an earlier appointment. Till then, I’ll maintain off on medication, and I’ll strive to not sneeze or get in any extra automobile accidents.
“Simply don’t fall!” an older good friend not too long ago suggested me with a shrug and a smile, after I requested how she manages her osteoporosis. As I made my manner via the massive stack of medical payments on my desk from this 15-month odyssey, questioning which to pay now and which to attempt to push off till later, this appeared nearly as good as recommendation as any.
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Deborah Copaken, founder and editor of Ladyparts, is an award-winning journalist, photographer, screenwriter, and the New York Instances bestselling creator of seven books, together with Shutterbabe, The Crimson E-book, and Ladyparts.
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The headline of this text was amended on 22 October 2024 to mirror that the author is now 58.
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