Anyone have a preference of Tymlos or Forteo for side effects?

Posted by jbrooks @jbrooks, Jun 4 6:28pm

I have read that Forteo is a synthetic man made peptide from the perithyroid gland where Tymlos is a natural occuring peptide from the perithyroid gland. The side effects are brutal with either medication, but Tymlos reads as having less. Reading this site more people seem to be complaining on dealing with hard and longer lasting side effects with the Tymlos. Can anyone comment on their reactions to either? I am trying to decide which of the two evils to use.

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@drsuefowler

I am 74 and very sensitive to medications. I could only tolerate a half dose of Tymlos and took a half dose for 9 months. A higher dose of Tymlos caused dizziness, orthostatic hypotension and a queezy stomach. A REMS test showed significant improvement on my spine with no change on hips. A new endocrinologist wanted me to try Forteo. She thought that I needed a whole dose to help my hips. I was on Forteo for 6 months. At first, it didn't seem to bother me. During the 5th month, I noticed a lot of joint pain, leg vein swelling and pain, fatigue and brain fog. Both medications caused a distended abdomen and I gained 15 pounds with them. I was underweight before, so not the end of the world. My mother had dementia, so I was very concerned about the brain fog. I was also noticing that I didn't have the energy I needed to get things done. I have been back on a half dose of Tymlos for a week. My brain feels more awake, but I still have the pain. Both medications caused constipation and frequent urination. I was more relaxed on Forteo, but could hardly make it through the day. I have an endocrinologist appointment next week, and she doesn't know that I switched back. My recent DEXA showed significant improvement in spine and hips. However, my recent REMS test showed no significant changes. According to DEXA I have osteopenia, but according to REMS osteoporosis.

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That’s great news @drsuefowler!

If you don’t mind, could you share your bmd% improvements based on DXA results? Did you use the same machine? Thanks.

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@mayblin

That’s great news @drsuefowler!

If you don’t mind, could you share your bmd% improvements based on DXA results? Did you use the same machine? Thanks.

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@mayblin, following are my DEXA results. I did not have this test done on the same machine as last year. I went to a different place so that I could also get a TBS. Also, I did not like the sloppy job by both the technicians and the radiologist at the previous place. (I had a DEXA on 12/23 after a month of 20 mcg Tymlos and a year of 300 mg Strontium. I will not report this due to the effects of Strontium.) From 12/14/21 to 5/16/25 here are the changes:

Spine went from -2.9 to -1.2 (adjusted to -1.1 for TBS)
Right femoral neck went from -2.6 to -2.2
Left femoral neck went from -2.4 to -1.6

My TBS was 1.37. Apparently, anything greater than 1.31 is considered normal microarchitecture. The ten year FRAX was estimated to be 19.3% TBS adjusted to 17.0% for spine and 5.3% TBS adjusted to 5.0% for hip.

My DEXA scores were never that bad, but I have had multiple fractures. I have broken my elbow, wrist, ankle twice, shoulder and foot. No fractures in 16 months!

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@drsuefowler

@mayblin, following are my DEXA results. I did not have this test done on the same machine as last year. I went to a different place so that I could also get a TBS. Also, I did not like the sloppy job by both the technicians and the radiologist at the previous place. (I had a DEXA on 12/23 after a month of 20 mcg Tymlos and a year of 300 mg Strontium. I will not report this due to the effects of Strontium.) From 12/14/21 to 5/16/25 here are the changes:

Spine went from -2.9 to -1.2 (adjusted to -1.1 for TBS)
Right femoral neck went from -2.6 to -2.2
Left femoral neck went from -2.4 to -1.6

My TBS was 1.37. Apparently, anything greater than 1.31 is considered normal microarchitecture. The ten year FRAX was estimated to be 19.3% TBS adjusted to 17.0% for spine and 5.3% TBS adjusted to 5.0% for hip.

My DEXA scores were never that bad, but I have had multiple fractures. I have broken my elbow, wrist, ankle twice, shoulder and foot. No fractures in 16 months!

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Addendum: I should have written about my changes from 5/15/24 on a half dose of Tymlos to 5/16/25 on Forteo.
Spine went from -2.2 to -1.2 (Adjusted to -1.1)
Right femoral neck went from -2.7 to -2.2
Left femoral neck went from -2.3 to -1.6

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@drsuefowler

Addendum: I should have written about my changes from 5/15/24 on a half dose of Tymlos to 5/16/25 on Forteo.
Spine went from -2.2 to -1.2 (Adjusted to -1.1)
Right femoral neck went from -2.7 to -2.2
Left femoral neck went from -2.3 to -1.6

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Thank you very much for sharing @drsuefowler. The improvements from tymlos followed by forteo in the past year look wonderful, femoral necks and TBS too!

Were the numerous fractures traumatic or fragility type? Did your doctors have any explanations?

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@mayblin

Thank you very much for sharing @drsuefowler. The improvements from tymlos followed by forteo in the past year look wonderful, femoral necks and TBS too!

Were the numerous fractures traumatic or fragility type? Did your doctors have any explanations?

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Five were from falls. The last one was fragility. I started on a walk and my foot hurt. My second metatarsal on my left foot was fractured. Doctors don't seem to care as to why I fall. They also don't seem to care why I have osteoporosis. They just diagnose me with the generic age related osteoporosis. I know some of the reasons for my osteoporosis. I am petite and was underweight for years, and I was on proton pump inhibitors for 11 years. I am also on thyroid medication. I never had a TSH higher than 3.88, but 20 years ago because of my fatigue, my Dr put me on Levothyroxine. Like the PPI, they just kept prescribing it. I took myself off the PPI. I wonder if I cut back on the Levothyroxine, would my bones be better? My endocrinologists think that my blood levels are fine though.

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@drsuefowler

@mayblin, following are my DEXA results. I did not have this test done on the same machine as last year. I went to a different place so that I could also get a TBS. Also, I did not like the sloppy job by both the technicians and the radiologist at the previous place. (I had a DEXA on 12/23 after a month of 20 mcg Tymlos and a year of 300 mg Strontium. I will not report this due to the effects of Strontium.) From 12/14/21 to 5/16/25 here are the changes:

Spine went from -2.9 to -1.2 (adjusted to -1.1 for TBS)
Right femoral neck went from -2.6 to -2.2
Left femoral neck went from -2.4 to -1.6

My TBS was 1.37. Apparently, anything greater than 1.31 is considered normal microarchitecture. The ten year FRAX was estimated to be 19.3% TBS adjusted to 17.0% for spine and 5.3% TBS adjusted to 5.0% for hip.

My DEXA scores were never that bad, but I have had multiple fractures. I have broken my elbow, wrist, ankle twice, shoulder and foot. No fractures in 16 months!

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Thanks for sharing your results. I am on Tymlos but my younger sister has just begun Strontium.
What were the effects of Strontium for you?
Are you implying it was negative?
Thank you.

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@mundy

Thanks for sharing your results. I am on Tymlos but my younger sister has just begun Strontium.
What were the effects of Strontium for you?
Are you implying it was negative?
Thank you.

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I didn't have any side effects from Strontium. I stopped taking it, because it makes the DEXA results inaccurate. Strontium weighs more than calcium, so it shows up as more dense on the xray than it really is. The only way to accurately measure Strontium results would be with a REMS Echolight test.

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@drsuefowler

Five were from falls. The last one was fragility. I started on a walk and my foot hurt. My second metatarsal on my left foot was fractured. Doctors don't seem to care as to why I fall. They also don't seem to care why I have osteoporosis. They just diagnose me with the generic age related osteoporosis. I know some of the reasons for my osteoporosis. I am petite and was underweight for years, and I was on proton pump inhibitors for 11 years. I am also on thyroid medication. I never had a TSH higher than 3.88, but 20 years ago because of my fatigue, my Dr put me on Levothyroxine. Like the PPI, they just kept prescribing it. I took myself off the PPI. I wonder if I cut back on the Levothyroxine, would my bones be better? My endocrinologists think that my blood levels are fine though.

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So sorry to hear what you have to go through, and it’s great to hear that you’ve been fracture free since tymlos/forteo treatment. I was wondering about the numerous cortical bone fractures; good that the cause was traumatic except the one on foot which probably makes your FRAX score higher with your T scores.

You could discuss with your endo to see if levothyroxine’s dose could be further “tweaked” lower. All the best to you!

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@mayblin

So sorry to hear what you have to go through, and it’s great to hear that you’ve been fracture free since tymlos/forteo treatment. I was wondering about the numerous cortical bone fractures; good that the cause was traumatic except the one on foot which probably makes your FRAX score higher with your T scores.

You could discuss with your endo to see if levothyroxine’s dose could be further “tweaked” lower. All the best to you!

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Thanks for your input, interest and knowledge @mayblin. As always, I appreciate your help.

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I chose Tymlos over Forteo because it doesn’t need refrigeration after opening. With Tymlos you can titrate the dose. I started at 1/4 of the full dose and gradually worked my way up to full dose over several weeks. I did not get the side effects

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