Connect
Looking for a doctor in Midwest
I am seeking a physician to treat my osteoporosis and reside in Wisconsin. I can see a few choices available between Milwaukee and Madison, but am not against looking further away if that would allow more progressive treatments than what I have been on. The last 3 years I’ve mainly only had Alendronate. My T score has remained abysmal at -3.7 at now 64 years of age. I’ve attempted to get a second opinion from Cleveland clinic. Who highly suggests I take a different path to rebuild bone. So with that said, could look to Cleveland for a physician. Or perhaps Mayo Clinic? I can be messaged or comments placed here. Whatever is most appropriate, if anyone has suggestions, I would greatly appreciate them. I’m not sure what else would be helpful. But please ask. Thank you in advance
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
I’m curious if any of you breastfed your children?
@mayblin and @patwerthman
Upon leaving Mayo Clinic, I did not learn the “source” of my osteoporosis. Since all the following tests were within normal ranges, except the Calcium, 24 urine test, my assumption is genetics?( I’m still working on getting that answer)
Here are the tests Mayo Endo ordered:
1) Calcium, 24 hour urine- value= 288( ** reference range : < 200mg/24 hour. I was told this is “slightly” elevated.)
2) Creatine, 24 hour urine
3) Quantitative M-protein study
4) Beta-Crosslaps( B-CTX)
5) Tryptase
6) Bone Alkaline Phosphatase
7) Parathyroid hormone
8) Cortisol
9) 25-hydroxy vit D2 and D3
10) Phosphorus Inorganic
11) Alkaline phosphatase
12) Creatine with estimated GFR
13) Calcium
14) Albumin
My Alaska Endo repeated many of the above tests, including parathyroid hormone and a new one, Iodized Calcium test and all are within normal ranges as far as I can tell. ( I’ve received these results, but haven’t talked to him yet to get his interpretation of the findings as well as if he has formed an opinion as to the “source” of my osteoporosis.)
**mayblin- thank you for the P1NP info
**patwerthman- CTX and P1NP are bone turnover markers ( BTMs). They are blood tests that can identify osteoclast activity ( CTX) and osteoblast( P1NP). Highly recommended by Dr. Mc Cormick ( are you aware of his Great Bones book? It’s been very informative for me and I learned about it in this support group). The purpose of BTMSs is to guide and assess if osteoporosis meds are working vs waiting an entire year for a DEXA scan to see if treatment is working. ** ideally you want baseline tests BEFORE starting treatment. These two tests are also recommended by the International Osteoporosis Foundation and there’s another osteoporosis related organization Dr. Mc Cormick refers to. From my tests at Mayo I believe I have a CTX baseline, but I do not have a P1NP. I’m not sure if my “Bone Alkaline Phosphatase” or the “ Alkaline Phosphatse” tests mentioned above qualify as bone marker tests or not( still trying to get familiar with all the new verbiage.)
Thank you, both for reaching out.
-
Like -
Helpful -
Hug
2 ReactionsVery helpful! Thank you! Yes I have both his books ordered.
I will see about getting these blood tests ordered. Special request them, if they can get blood out of me!
@fireweed4286 , thanks for sharing these info! It is interesting to see what other endos do in terms of labs to figure out possible secondary causes. I read an article containing a "complete list" (maybe close to complete) for the causes and corresponding tests/labs but could not find it anymore. Some disease states could become a secondary cause for bone loss such as thyroid problems, gastrointestinal problems (celiac, ibs etc), etc. Certain prescription drug uses in the past or at present could be a cause too. In some, inadequate or improper nutrition could be a cause. Genetics could play a part... In any case, bone loss in postmenopausal women almost always has a component of estrogen difficiency.
It is interesting CTX and P1NP are commonly used in therapy monitoring, and as you pointed out, they are recommended by IOF. These two are not used as tools in diagnostics. Both Alkaline phosphatase (ALP) and bone-specific alkaline phosphatase (BSAP), on the other hand, could be used in diagnosis of certain bone disorders or assessing metabolic bone diseases, among other clinical uses. I think your endo was getting them tested to rule out these.
BSAP are also used by some endos to monitor bone formation during therapy, but we hear P1NP has become more commonly used nowadays.
It is interesting to note that bone-specific alkaline phospatase (BSAP) is a component of total alkaline phosphatase (ALP). The latter is included in CMP, complete metabolic panel. As a matter of fact, if the bone forming signal is strong enough while on an anabolic, we could see an uptick of ALP without even getting BSAP tested. I saw my total ALP almost doubled (above upper limit of normal range) during peak Forteo effect. In general, ALP is not a specific or sensitive indicator for bone formation compared to BSAP. I read that P1NP and BSAP measure different stages of bone formation and that P1NP is a more sensitive and dynamic indicator.
-
Like -
Helpful -
Hug
1 ReactionAlso women who have breastfed may have bone loss
-
Like -
Helpful -
Hug
1 ReactionYes, all three. Coincidentally, I came across an article on this subject, through this support group, but hadn’t read it yet…… at super quick glance, I thought it indicated there was protection to the breast feeding mom, but, don’t quote me on that. When I read it, I will let you know!
@mayblin and @patwerthman
My Endo called back on his lunch break to update me on the labs he was waiting for. Prior to me getting the labs, he had said if the labs checked out fine, he recommended Forteo.
As I anticipated, he said the labs were all “fine.” However, he went on to say because of the calcium in my urine( the only positive test of all the tests I’ve had to date in addition to the DEXA scan) I cannot use Forteo nor Tymlos. Instead, he is recommending, Evenity.
I tried to clarify if genetics alone is the source of my osteoporosis( since everything is negative except for the DEXA and calcium in my urine). He did not exactly give me a clear answer, but did say, “ your body isn’t absorbing calcium, so it’s going out in your urine.” At least, that’s what I, “heard.” I tried to clarify again, but ge said he was on his lunch break and had to go, but to think about the Evenity and to let him know if I wanted to start it or not.
That’s where it’s at for me right now. I’m waiting for my appt at the Cleveland Clinic Bone Center, May 19, and hopefully get more information/answers. In the meantime. I will keep learning everything I can and prepare for this visit. I will keep you posted! Keep me up to speed how you are doing as well!!
-
Like -
Helpful -
Hug
2 ReactionsI will be very interested in what you find.
From what I have recently seen, a depletion occurs when breastfeeding
I had come across the article in this support group, the post is titled,, “Future.”
I tried to copy and paste it here, but not allowed for security reasons.
-
Like -
Helpful -
Hug
1 Reaction@fireweed4286, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
- "At 58, I have the spine of an 80-year-old. Navigating osteoporosis has been difficult and expensive" https://www.theguardian.com/wellness/2024/oct/22/osteoporosis-menopause-bone-density-diagnosis-treatment
-
Like -
Helpful -
Hug
3 Reactions