Calcium of 10.6 on Tymlos

Hi @daisylou , I have a couple of questions. Prior to tymlos, what was your daily total intake of calcium (food source + supplement)? Did you have high calcium level in blood and/or urine (from 24hr urine calcium test) before the start of tymlos?

When I was on forteo, my serum calcium started to rise after 2 weeks to 10.2 from baseline of 9.5ish, then stayed at 10.5mg/dL for 2-3 months before came back down. Forteo ( i think tymlos does the same, but double check) is known to cause temporary calcium increase for a few hours after injection. Coincidentally my initial injections were late evening before bedtime, and blood draws were early am so maybe my results were expected? During second year I switched to am injection (so almost 24 hr post injection), serum calcium stayed mostly around mid 9s with occasional low 10s but within upper normal of 10.4. My endo didn't ask me to do anything differently.

Please let us know your endo's approach to your calcium situation. Thanks.

Hi @daisylou
I started Tymlos in Jan 2024. My calcium levels for the previous 5 yrs was always in the mid 9s. After 2 months I was rechecked and it was up to 10.6, which was considered "ok". Then about 9 months in I went to a new endo for a second opinion and the blood test showed calcium was 11.1. However, that endo said that you also have to adjust the calcium number using blood albumin levels. There is a formula online that I looked up and you put in both calcium and albumin numbers and it calculates an adjusted calcium level. Using that calculator my adjusted calcium level was 10.2, which the endo said was still in the acceptable range. Now....to me it still seems that my calcium level is still higher than normal based on the fact that before starting Tymlos it was never close to the 10.0 range. Not really loving anything at all about this osteoporosis business. LOL

You may want to consider checking out the albumin/calcium calculator and ask your provider about it. You may find the adjusted calcium level not quite so high as the calcium alone. Also, it is extremely important to stay hydrated, drink plenty of water while on these drugs. Anything and everything to help kidneys process this stuff!
Cheers!

Hi @daisylou ,
I wish those of us on Tymlos had much more info on this!

I have been on Tymlos for 6 weeks now and on the full dose for about a month. I went to walk-in clinic last week with chest and back pain, only to find out I had broken a rib somehow. They also did blood work and the calcium came back 10.2, which while not as high as yours, according to the following article, it is considered high for an older adult, which I am.

This is a great article that anyone on Forteo or Tymlos should read and share with their doctor!
(Be sure to read the tip) https://www.parathyroid.com/hypercalcemia.htm

The numbers that are considered normal in routine blood tests, are NOT normal for older adults. Young people, (Children, teens, etc.) are still growing bones so it is normal for their numbers to be 10.6. Not so for us. The article also says, it is not how high the number is that counts. Any number in the "high" range can cause symptoms.

I have been having severe muscle cramping throughout my body for the past week, as well as arrhythmia throughout the day. The cramps are severely affecting my sleep. They are so bad I have to get up and walk around for a while. I am wondering if this is because my calcium level is elevated. The thing about all this that is most disturbing is that hypercalcemia actually causes osteoporosis, so now I am wondering if the broken rib is related to higher calcium?

Yes, this disease is perplexing and exhausting. But once we fracture, what choice do we really have? I am going to have my calcium checked again next month and will see what happens. Meanwhile, the endocrinologist made light of it, and doesn't want to see me for a year!

Please TYmlos users, continue to share. We are our own support system.

Could you please share why you switched from the bedtime injection to the morning? I will start Tymlos very soon and cannot decide whether to do morning or evening injections.

I did not keep track of my calcium intake, other than it was 900 per day from the fortified almond milk. Along with that I ate dairy. So I’m guessing 1800? My high calcium before Tymlos (upper 10 something) dropped down to 9.7 when I stopped the almond milk, which occurred prior to starting Tymlos . I had to delay starting Tymlos in order to sort out the high calcium. I didn’t have a 24 hour urine calcium test, so it was only noted in the blood test.
I really appreciate the details about your experience with Forteo and calcium level.
Will keep posting on this. My prescribing dr is a rheumatologist. He is having me come back in 2 months. Fortunately I have a primary Dr appt in 6 weeks and she will do a metabolic panel so I can see my calcium level again then.

So sorry to hear about the rib fx, muscle cramping and arrhythmias. The article was informative. I was glad to read that cancer does not present as high calcium.
My PTH levels were normal.
I had ultrasound imaging of my neck which my primary dr ordered . It showed a small nodule on the thyroid that I was told needed no further work up .
Are you drinking lots of water? I was told this helps.
I’m going to cut back on dairy and see if my next calcium levels is lower..
Best of luck to you

Thank you for mentioning this about the albumin level being pertinent to whether the calcium number is a problem . My dr did mention that to me before I had the blood test done. Maybe that’s why 10.6 is okay..

@susanjohnston , for the first month and a half after starting Forteo, i was very fatigued which i found out quickly it was due to low blood pressure (low 80s/low 50s), this lasted 24/7. Lying down helped a lot so i injected in the night to "sleep it off", but still very tired during the day, not fun.... the good news is body adapted in less than 2 mo by increasing water intake with added salt if needed.

To me the drawback of dosing in the night is when i forgot a dose and went to bed fell asleep, i couldnt make it up. This is the main reason for the switch in my case.

There was a published study on teriparatide (forteo) showing am injection yielded higher bmd gain when compared to pm injection. However the study was very small, the conclusion needs to be looked at with a grain of salt. If true, doctors and pharmacists will no doubt recommend it without hesitations.

Wish you a great success with Tymlos!

So generous of you to share your experience. I am very grateful. I am trying to figure out how to modify my calcium supplement intake once I start Tymlos since apparently calcium levels rise to concerning levels on the parathyroid drugs. Did you make any adjustments?

I didn't change my daily amount of calcium intake (1000mg per day from food) as i did not have abnormalities with calcium levels in blood or urine (or PTH) prior to drug therapy. My elevated blood calcium level after the start of forteo was expected according to my endo and it turned out to be transitory. From what I've read, depending on the magnitude of serum calcium increase, some endos will give out instructions for a remedy.