P1NP number on Tymlos

zooie, most concerning is the serum calcium. Maybe ask the PA for ionic calcium levels. That gives you the metabolically active calcium level. Both the elevated levels ALP and the calcium reflect the high bone turnover rate. If you can get a lab order for PTH at the same time, you'll get another clue about what is going on. You might try skipping the injection the night before the serum testing. For most people Tymlos leaves the system within four hours. You might be processing it more slowly, which could affect the labs.
Are you having any side effects from high calcium.

@zooie thanks for sharing. I agree with @gently that a serum calcium level of 11.2 mg/dL needs to be followed by your prescribing physician.

Before you get a lab for ionized calcium (the active form) done, you could get an estimation using this formula, according to medscape:
corrected calcium mg/dL = measured total serum calcium (mg/dL) + 0.8x(4 - Patient's albumin g/dL)

According to Tymlos' prescribing information, hypercalcemia is defined as albumin-corrected serum calcium equals or greater than 10.7mg/dL at 4 hours following injection at any visit.

Lilly, the manufacture of Forteo, cited that hypercalcemia was managed via reducing calcium supplements and/or Forteo doses at the discretion of the investigators in clinical studies. You might want to get your daily total intake of calcium (supplements + natural food sources) ready so that your doctor may suggest a modification plan.

Your bone markers' response to Tymlos were exceptionally strong! Literatures had been showing that btm changes with Tymlos were milder than Forteo in general. Yours demonstrated individual variation could be huge. P1Np trends nicely up! I've to admit CTX of 2870 is very high, most likely due to the coupling effect in bone remodeling (high turnover). If you monitor btms periodically, they will likely trend down eventually. But this high level is worth keeping an eye on.

For a comparison, my highest P1NP was in mid 400s at 13mo of Forteo, CTX wasn't tested at the time (I don't have a baseline nor my btms were tested during first year). Later it trended down to 200 with CTX of 910 at 17mo. Admittedly I was anxious with the high CTX level too. In the end, I had a good bmd improvements at all sites - lumbar, hip and femur necks 🙂

You will get an annual dexa scan to confirm if drug is working, right?

To me, your baseline CTX and P1NP were both at nice levels. Do you mind sharing what might have caused your bone loss?

I am confused,

"Before you get a lab for ionized calcium (the active form) done, you could get an estimation using this formula, according to medscape:
corrected calcium mg/dL = measured total serum calcium (mg/dL) + 0.8x(4 - Patient's albumin g/dL)

According to Tymlos' prescribing information, hypercalcemia is defined as albumin-corrected serum calcium equals or greater than 10.7mg/dL at 4 hours following injection at any visit."

If her serum Ca level is already greater than 10.7 (11.2 to be exact), ADDING an albumin correction is only going to make it worse.

If someone's serum albumin is greater than 4g/dL, the part "0.8x(4 - patient's albumin)" will be negative and this number will be deducted from measured total serum calcium, hence resulting a lower "corrected" calcium in mg/dL. For example, if patient's serum albumin is 5g/dL, then corrected calcium will be 11.2 + 0.8x( 4-5) = 10.4 (mg/dL)

Thank you! Yes, I will ask the PA for both the ionic calcium and PTH tests. And good idea, I will skip the injection the night before the blood draw.
As for side effects, I have brain fog, poor sleep, poor appetite, weight loss, leg cramps, decreased muscle strength, but I had attributed all that to losing my spouse a few months ago.
So I'm unsure if some of that might be partially due to the high calcium.

Yes, I am planning on getting both a dexa and a rems. I have alot of osteoarthritis and I have not been able to get a spine reading on the dexa and I also have had hip replacement.

As for why the bone loss? I'm only 100lbs and also have had I-131 treatment for graves disease and am on thyroid meds. I suspect my calcium and protein intake were on the low side.

Any other suggestions? I will report back after my PA visit and the additional tests.

Thank you!

zooie, the Graves is probably responsible for the elevated CTX. Those 131 tricks need # 132. It seems to me that your Graves is uncontrolled. It can take out wide swaths of bone.
Graves can indirectly contribute to elevated pth, but I'm no longer thinking that the parathroid is an issue. Which is kind of a relief. With the parathyroid you'd probably have to have one or more of the glands removed before resuming Forteo.
Graves is no fun and you need effective treatment. But the teriparatide isn't making things worse. It is keeping the osteoblast abreast of the osteoclast in a positive-bone relationship.
Graves is infamous for depression.
I hope your physicians are really smart. This coming from a rank amateur.

I'm saddened to hear of your so recent loss. Grief just takes us. I can only hope that you find impossible comfort.

Thank you!
I had the iodine treatment for my graves disease decades ago and have been on synthroid ever since.
I did see the bone PA this week; she had reluctantly provided the script for the bone markers. However when I queried her about the high CTX, she decided I didn't need the bone marker tests and she would instead order them annually if I insisted. Sigh!

I'm to continue on the Tymlos, reduce my calcium intake, reduce the Vit D from 4k to 3K and in a month, test for: PTH, ionized calcium, magnesium and CMP. I'm also getting the Dexa for the forearm; I have so much osteoarthritis that I can't get a reading for my spine and I've had hip replacement. Then I will redo the REMS in July.
She also said if I tested positive for PTH, I'd have to go on Prolia. I'm going to have to review possible options.

zooie,
I meant to add to my last post that you are probably on track with lowering calcium and or vitamin D.
It makes no sense (to me) that noticing the high CTX excites the insistence that you don't need bone markers.
If your pth is elevated, you have to find out if the parathyroid glands are releasing too much pth, usually by imaging for benign tumors. Going on Prolia in that event is not a remedy. I guess the PA is thinking that Forteo would have to be the cause.
Do you hope the PA will be consulting with the Physician.
Is it possible for you to see a rheumatologist.

I also just got my BTM numbers after 3 months of a daily Tymlos dose. I had to order and pay for my tests since my endo doesn't care about them. My P1NP went from 59 to 160 for a 171% increase, about a third more than expected for men. My CTX went from 551 to 925 for a 68% increase, over twice the expected increase for men. I was a littel concerned about the latter, so I sent the numbers to the doc for any comment, and she only sent me a curt message that she already told me that she doesn't care about BTMs.