Confused about my TBS score

katgirl, I really just want you to look at the picture of trabecular bone. This one is actually better. TBS looks at all those tiny bone. Your network is intact. Many people, like me, are compromised. A thousand of those tiny connection can break without breaking or compressing the bone. I have many broken connections, but no compression. "Degraded" my TBS says.
But I'm on Forteo and it's really working restructuring those connections.
https://www.istockphoto.com/photos/trabecular-bone

I'm so happy Forteo is working for you!

TBS: So the inside of my bones are normal (for now) but the outside of my bones aren't?

So much to think about in terms of hormone replacement. My grandmother did die of breast cancer. And I have my cancer history (although nothing that would be affected by hormones, I THINK). I haven't had a gyno since the hysterectomy. It occurs to me that this may be why the hormone piece was never addressed. But I didn't need Pap smears after the surgery and wasn't near menopause at that time, so I was told I didn't need one anymore. I wish I'd been offered hormones at the time to deal with the horrible symptoms!! Now this far out, I'm not sure. I go back and forth on that too. I would definitely have to find a new doctor for that. Neither the endo or my GP are fans of HRT at this point. They just want me on an osteoporosis med.

I would actually feel better about going on Forteo or Tymolos than Evenity. (If I have a really bad reaction to one of those I can stop them immediately. With Evenity, you are stuck with 30 days of bad effects if not longer. ) Ironically my endo told me to research them and get back to her about what I wanted to take. So I was going to tell her Tymolos ( you can ramp up the dose, it has been out longer) and then I found out I can't afford it with my insurance. Another reason perhaps to wait though. I get my insurance through the marketplace and maybe next year I could get a better prescription plan, but I doubt it. And then reclast wouldn't be covered. So I think I'm going to be stuck with Evenity. Which, for me, is the scariest of the three.

Do you mean pay for a Dexa at the same place I got it with my health insurance? Or go somewhere else. It took me a year to get my first Dexa the waiting list was so long. So even if I schedule one now, I wouldn't get it until next spring. UNLESS my new endo has more pull than my GP in getting things scheduled. I should try to look back and see what my insurance was charged for that. I would also have to get my endo or GP to call it in. My GP says if I'm not taking medication she won't give me another scan until year two. I'm not sure what my endo will say. I will ask. Doesn't a doctor have to order it for you?

That was why I was considering doing a REMS Echolight scan instead. Although the next sign up for those near me won't be until this summer. Out of pocket would be at least $250 I think. I've heard this type of scan is more accurate with us small, fine boned people. And I don't need a doctor's order. I'm definitely interested in getting this scan. It's the one thing I'm NOT waffling about 😉

So, how long do the bone gains last with these drugs? Do you go through years of treatment and then only have the gains for a couple of years? Or are these drugs so new they don't know yet?

What about bounce back? For instance, I know if men take testosterone, their own body stops making it. Does that happen with these drugs? (I think that is the problem with Prolia?). What about Evenity, Tymolos, and Forteo. Does your body know how to go back to doing whatever it does with bones? (And I realize you have to take reclast after the anabolic to lock it in---how well does it actually lock? and for how long?

I find it amazing that the endo said" here are the three anabolic drugs, pick one" and that was the extent of our conversation about any of this.
I got more information when I bought a new bicycle for heaven's sake.

I can almost guarantee I will be one of the people who has side effects. I'm extremely sensitive to everything!! I have MCS and a whole host of other sensitivities. I envy people who can take meds with nearly no complications.

Thanks for all your input and just for listening!

I should probably go rest my brain as well as my body now.

yeah, katgirl read this tomorrow or the next day when you feel better.
Your trabecular bones are probably thin. Dxa describes the little section of bone squared of in the images. The femur is 30 to 50% trabecular The lumbar spine is around 90% trabecular.
TBS isn't addressing density. Your TBS is telling us that those tiny bones have not disconnected from each other. There is structural integrity. We only know they are thin from the dxa report. TBS software uses different information from the exact same images as the dxa.
It is still the held opinion that HRT can have an effect on breast cancer. With genetic risk, I'd
avoid it. I'll never take estrogen because I was ever so happy to be free of it.
I'd rather see you on Forteo. Tymlos contains preservatives concerning because of you chemical sensitivity.
Evenity is the latest. It hasn't been real world tested, but most people are having good results.
Prolia is the rebound drug. It is good for those without kidney issues or side effects and take it for the rest of their lives. It is the only osteoporosis drug that promises to leave your bones weaker than if you'd never taken it. Reclast has been somewhat efficient at blocking rebound from Prolia.
In general, men regain their baseline production of testosterone after quitting supplementation.
When you stop taking Forteo or Tymlos you won't return to lower than baseline. But you would lose the gain.
Things are in flux with those two medications. There aren't studies for use beyond two years. And many physicians are uncomfortable prescribing it that way.
The endocrinologist I see has promised to prescribe Forteo until my T score is at -1, when I asked for a third year. I was quite pleased.
I always think "sealing the gains" is a strange construction. The anabolics stimulate the process of rebuilding bone. All the other medications stymie or stop the living process substituting it with systemic senescence.
I want to be sure that you have checked with the pharmaceutical companies to see if they will help with the payment. Both Tymlos and Forteo have such programs.
I am sometimes completely unclear in these posts. Be sure and demand answers wherever I'm remiss.
Happy Dreams.

Thank you so much for all of this information!

Both Tymolos and Forteo are out of reach for me Financially. Tymolos isn't covered at all by my insurance and the company's "patient aid" doesn't even come close to making enough of a dent in the price for me to buy it. They must have had a more robust offering when it first came out, because I heard about people getting it for free. That is no longer the case.
Forteo, while covered, would leave me owing 60% of the cost. They have no program to help with costs.

Evenity is covered because it is billed under the "out patient surgery" portion of my insurance, which, I apparently have very good coverage for, at least this year. Ditto for reclast. (Tymolos and Forteo are billed as high tier special prescription drugs. )

Evenity is SO NEW. I lost several years to a "new drug" that they didn't know all the side effects of when I was in my 20's and would like to not repeat that experience.

And so, here I sit. The only thing I know for sure is that I am hoping to get an REMS echo light scan in the coming months.

Good night!

@katgirl It is indeed a complex business, this world of osteoporosis treatment. That is if you plunge into trying to understand it and not just doing whatever any given doctor says to do.
I want to offer a slightly different perspective than yours that might be of some use. First I'm a person that chose Evenity despite the fact that it hasn't been available as long as Forteo or Tymlos.
My thinking went like this:
Evenity is a more powerful bone builder than Forteo or Tymlos. Way more.

Evenity does not have any more acute side effects than the other two.
I actually think it has less.

Evenity is once a month which I think is a great dosing regimen. It has a modest time period of impact but does not provide a constant irritation or likelihood of developing sensitivity to it like daily injections do. And it's not something that stays in your body for years like those Reclast shots.

I agree with your concerns about "new drugs". I think that is important.
In this case I decided the other factors outweighed that concern, for me that is.
Besides, Evenity is not as new as everyone seems to think. True it was made available in 2019 but the research goes back to around 2006. And the larger trials were completed years before the approval. The FRAME trial was published in 2016 and included 3321 patients on Evenity. The ARCH study with was published in 2017 and 2046 women took Evenity.

As you might have guessed from my views, I took Evenity, had great results in my spine and slight gains in my hips. I had no side effects worth mentioning and I intend to take it again to try to gain even more. Best of luck to you with your decisions.

Thank you, this is very encouraging!
Did you follow up with reclast?
If not, how long did you keep your gains? Or are you just finishing?

I think Evenity is most likely where I am going to land given its my only option fiscally anyways.

I just don't want to start now. One, after a tough couple of years, I just want to enjoy all the fun plans I have coming up this summer. While lots of people don't have side effects, there are still plenty who do and I just want to enjoy a season after a couple of really rough years.

And two, I don't want to start on Evenity, and not be able to get the full 12 months in because my insurance changes.

So, if I take the plunge with Evenity, it will most likely be end of this year or beginning of next. That will give me plenty of time to wrap my head around this and maybe even get another scan before I start.