Recently diagnosed with severe osteoporosis of lumbar spine -3.4 T sco
I just saw an endocrinologist (referred by my OB/GYN) and all of my bloodwork came out within normal ranges. Although she did not test my sex hormones (which I believe is the cause of my sudden diagnosis - went from osteophenia of lumbar spine in July 2021 and repeated my bone density test in January 2023) (2 1/2 years later) which revealed my t score of -3.4 (from -2.3). I went through menopause at age 60 as well in 2022. She now wants me to take a 3 step therapy program with either Evenity, or Foreto or Tylmos and then after this therapy is finished to go on Prolia several years and then take an oral or iv bisphosphonate. Has anyone else been on any of these medications and did you have success with bone density and did you experience any severe side effects?
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Thank you so much! Very thorough and interesting testing. I’m getting all my calcium through dairy too now, but discovered I was lactose intolerant. I wonder if I should consider a comprehensive stool test. I’ve most of the other tests, except Ntx. I have no estradiol at all and would love to go on HRT. I had no idea you could test for a propensity to blood clotting. I’m going to save this email and reread it on Monday and perhaps find a naturopathic doctor here. I’m cooking Easter dinner for 20 people tomorrow! But such an informative response! Thanks again!
Hi Lynn59!
I'm lactose intolerant too but drink milk sometimes that's lactose free but as of yesterday, I have eliminated it from my diet and only consuming hard cheese (swiss, cheddar), yogurt or plain kefir. Unfortunately my mom had a blood clotting disorder first discovered in 2013 as the clots would travel to her lungs. She was on warfarin first, then Elliquis. Sadly, this past Fall she passed as a result on not being able to tolerate anticoagulant medicine and had her on home hospice for 3 months. I'm still mourning the loss of my mom, then getting a diagnosis of osteoporosis in January and more recently being attacked by a dog that I know. Several puncture wounds and bites throughout both my legs! And I started taking Teriparatide this past week. I'm a nervous wreck! Good luck with your Easter celebration. I'm going to go over my sister and brother in laws so I don't have to cook. Just eat!
I didn't seek consultations outside traditional medical system, since i dont have much obvious medical issues ehich may cause op as a result or family history ( although my greatgrandma and grandma were skin and bones in their 80s and 90s). Not on any Rxs except a small dose of crestor. My GI is fine. The tests my endo ordered are main ones I think such as: vitd, 24hr urine calcium with creatinine, parathyroid hormone, dx for celiac disease, basic metabolic panel, morning cortisol. There is a dexamethasone challenge test. Later she also checked some rarer ones like prolactin level, serum electrophoresis, tryptase, plasma histamine etc. Nothing out of ordinary. Guess the main culprit for me is estrogen loss. She monitored my blood calcium, which was elevated for couple months after the start of forteo, but this is expected. VitD was checked periodically. Then some btm markers and yearly dexa.
I read a paper which has a full table of possible causes of op and corresponding diagnostic tests. Can't find it right now as I'm not good at organizing the amount of info generated in learning this terrible condition.
Please share your progress if you could. The collective experiences from each member could benefit lots of women and men in the years to come.
Wish you the best!
Thanks so much. I will definitely post a progress report.
@doglover1962. I’m so very sorry to hear you recently lost your Mom. I was the primary caregiver for my 89 year old stepfather, who passed away this past year. It’s very hard losing someone so close to you. The dog attack sounds vicious. I hope you heal well. Such an unfortunate, horrific experience, especially just before starting teriparatide, which is scary enough. I hope you enjoy your family time this weekend. Take care and let’s keep in touch on our teriparatide experience. I’m starting on April 11th.
Lynn59, thank you so much for your sympathy. I'm very sorry for your loss too. It is indeed hard to lose a loved one who you were so very close to. Yes, let's keep in touch with our Teriparatide treatment. You can send me private messages if you prefer. I only have experienced mild side effects like injection site reaction that is gone by the following day (I inject myself in the evening) and I noticed my eyes burn a little but then it goes away. Weird. One thing that concerns me is it can raise blood and urine calcium. My blood calcium is in normal range but my urine calcium is high. My functional medicine aprn will be monitoring it in 4 to 5 weeks. Just have to make an appointment.
Hi @doglover1962 may I ask are your ctx and p1np your baseline readings? Prior to your forteo therapy, were you on any other bone meds? Is your doc going to monitor both bone markers during your forteo therapy?
Thank you very much for the note of "gene factor 5 leiden heterozygous"? May I ask which specialist orders this kind of test?
@doglover1962 and @lynn59 women bear most of the heavy duty of a caregiver. I'm so sorry to hear your loss. I've been there also. Let's not forget to prioritize self care in the process should we be put into the role again!
Hi Mayblin!
My baseline CTX is 742 and P1NP is 68. I just started taking Teriparatide this week so it's my first osteoporosis medication for me. My primary care doctor was able to order the test due to my mom having that inherited blood clotting condition.
Amen to you about caregiving! We often forget to take good care of ourselves while caregiving a loved one. But if we are not well, we won't be able to care for them. I have been trying to heal and recover but it's been a rough road for me after all that has happened in just a matter of 6 months. You take care of yourself.
Mayblin, yes, my functional medicine aprn will be monitoring my bone markers while on Teriparatide. I have an appointment with McCormick in May for a bone consultation too. My endocrinologist is not working with me very well. Still in the process of getting an appointment with UCONN Osteoporosis center with a qualified doctor. Right now, I have an appointment with a new doctor there, however, I researched this doctor and she has a rating of 1 out of 5! No thank you. And then I got bit by a dog so that side tracked me to book an appointment with a well qualified and good patient rating. Don't care if they then schedule an appointment until the end of the year. I still have my current endocrinologist to lean on.
Thank you so much for the information @doglover1962! I will ask my cardiologist or gyn to see if I need the test.
Looks like your start of teriparatide is pretty smooth, other than what happened or is ongoing. Grieving is a painful and long process. Take one day at a time. Learning a new hobby may help by distracting and refocusing.
Yeah finding a good endo who fits your need is crucial! Hope you will meet yours soon (ask to be put on a waiting list).
All the best!