Struggling with Tymlos medicine

I liked morning better @judithideker. We are all different! I did my shots around 9 am 🙂 Hope everyone gets up to 7 or 8 clicks!

What is/qualifies as "late stage osteoporosis" and how does that compare to the DEXA scan T score?

I didn't have "late stage osteoporosis" written on my DEXA scan report. But the T score was -2.5 for vertebrae, -2.7 for left hip and -2.8 for right hip. I am in my 60s and was just recently diagnosed.

@healthmatters I have never seen the term "late stage osteoporosis" which sounds perilously close to "end stage"!

But regardless, your DEXA scores, according to what I have been told by doctors, are not severe. One expert, McCormick, draws the line at -3.3. I personally started to pursue bone building meds at -3.0. Your spine in borderline.

Your scores are in a kind of murky intermediate stage and I am wondering what your doctors are recommending. It might be possible to get a bone quality (trabecular score) test.

It also matters whether you have secondary causes to treat (like parathyroid issues or steroid use), whether you have had fractures, and how your balance is. Hoping you have a good provider to assess everything.

Thank you for your response. So far everyone here has been so informative.

You wrote " Hoping you have a good provider to assess everything." Yes that is so important. it is hard to really know what dr to go to and how to determine if they know what they are doing. So finding a dr is confounding for me.

Currently, all of my information has come from a GYN dr. But I am thinking from reading all of this that this involves endocrinology (since the parathyroid may be involved) and whatever the name of a bone specialist would be.

Here is information I have found.

Various healthcare professionals, from rheumatologists to gynecologists, can treat osteoporosis and help prevent complications, including bone fractures.

If left unmanaged, osteoporosis can lead to loss of bone mass and increase your risk of fractures. This is true for primary osteoporosis, which happens on its own, and secondary osteoporosis, which occurs due to another condition.

Several types of doctors and other healthcare professionals can help you manage osteoporosis. The best option for you will depend on many factors, including any underlying causes of your osteoporosis and other health needs you may have.

Here’s a closer look at some of the professionals who can help.

Primary care provider
Your primary care doctor or family clinician you see for general health concerns and annual physicals may be a good starting point.

Depending on their background and area of expertise, they may be able to help by recommending physical activity, nutrition, and lifestyle tips. They can also prescribe medication.

Even if they don’t have expertise in this area, they can offer a referral to another specialist who does.

Endocrinologist
An endocrinologist specializes in hormone-related conditions. Hormonal changes, specifically decreases and testosterone and the reduction of estrogen after menopause, play a big role in primary osteoporosis.

An endocrinologist can help correct hormone imbalances and recommend lifestyle changes to help treat osteoporosis.

Geriatrician
Geriatricians specialize in healthcare for older adults. The risk for osteoporosis increases with age, so geriatricians often have lots of experience with managing osteoporosis.

Rheumatologist
A rheumatologist is a specialist in musculoskeletal and autoimmune conditions. They diagnose and treat conditions affecting the bones and joints using nonsurgical methods.

They might coordinate your treatment with a physical therapist, orthopedic surgeon, or other doctor.

Gynecologist
Gynecologists specialize in female reproductive health. The onset of menopause leads to a drop in estrogen, a hormone that plays a role in protecting your bones. This drop in estrogen can lead to osteoporosis.

A gynecologist can offer guidance on managing menopause and some of its potential effects, including osteoporosis.

Physical therapist
A physical therapist is a movement specialist. They can help you to improve balance, strength, and function through a specific exercise program.

They can help you to choose and complete appropriate exercises and activities so you can improve your strength while living with osteoporosis.

Learn more about physical therapy for osteoporosis.

Orthopedic surgeon
Osteoporosis increases bone fracture risk. An orthopedic surgeon treats bone fractures, including those that result from osteoporosis.

Although an orthopedic surgeon likely will not offer treatment and management recommendations for osteoporosis, you may be referred to one if you experience a fracture.

Frequently asked questions
What is the best doctor to see for osteoporosis?

Your choice of healthcare professional depends on the cause of your osteoporosis, but your primary healthcare professional is a good place to start.

Is it better to see an endocrinologist or a rheumatologist for osteoporosis?

Both endocrinologists and rheumatologists can offer osteoporosis testing, diagnosis, and treatment. Rheumatologists specialize in conditions of the bones and joints while endocrinologists specialize in hormone imbalances.

Where do I get an osteoporosis test?

A primary healthcare professional or specialist can evaluateTrusted Source your balance, gait, and muscle strength. They can also order a bone mineral density test such as a dual-energy X-ray absorptiometry (DXA) test.

The bottom line
Your choice of a doctor for managing osteoporosis depends on personal preference and the underlying cause of the condition. You might start with a primary care professional who can refer you to a specialist if necessary.

I just use an endocrinologist for osteoporosis. My primary care doctor didn't know enough to be honest, but they can order a DEXA scan and help expedite an appointment with an endo.

Based on my experience, I agree with Windyshores.

2022 my score was -4.5; next one was -4.7. That's when we flew to MA from TX to consult with Dr. Keith McCormick. He advised Tymlos and a baseline Dexa, which was -5.1. After a year on Tymlos I was so anxious to see the Dexa score, but someone made a mistake and the results were worthless. The spine came back -3.7--not possible. Dr. McCormick said it was likely the technician did not line me up properly on the table. So, I continue on the Tymlos and hope the next test actually shows my status.

I have been reading through this and it has been very helpful. I started on Tymlos about 1.5 weeks ago - started full dose. Going along ok until I had some chills one night, didn't think much about it, but the next night terrible shaking chills. It is not a known side effect but I stopped then. I have been trying to reach my Dr for days now. Hoping to talk to her and maybe go to the smaller dose to start. Since I'm going to guess I may be educating her on the smaller doses - think half dose to start or should I start lower? (I did have minor headache and faster HR during the first week, but then would fall asleep and fine in the morning) Thanks!

@maurkenn my personal experience was that at first I could not tolerate the full dose, or the half dose for that matter. I went down to 1/4 dose (two clicks of the pen) and worked up from there, slowly, as tolerated. I eventually finished two years with mostly 7 clicks, 7/8 of a dose. So it is possible you can tolerate Tymlos over time.

My doc didn't suggest this but was happy that I got onto the medicine in whatever way I could. He told me he now uses this ramping up method in his practice. Maybe you could try that on your own and if you can tolerate 1/4 dose, discuss with your doctor.

@kathleenintexas I responded on another thread. I had a large gain in my DEXA as well and was happy with the trend regardless of any possible errors. Did McCormick tell you to disregard the results entirely? What does your endoc say? (More detail in the other response...)