Does anyone else get night sweats, extreme cold or heat on TYMLOS?

Posted by alidamc @alidamc, Sep 26 12:40pm

I have cold intolerance. Probably from past years of smoking cigarettes.
Lately after taking TYMLOS, after or for about an hour I start perspiring and get very hot. Then I get cold. Sometimes I wake up soaked in perspiration.
I’m 75, so it’s not menopause-related.
I am scheduled for a thyroid ultrasound, but it’s unrelated.
Thyroid cancer and thyroid benign nodules run in my family.
My hair is still falling out in scary amounts.
I may have to do a GofundMe for a wig. (That’s a joke.)

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alidamc, there is no proof that Tymlos affects the adrenal gland. There is unproven mention of this rare possibility with the somewhat similar Forteo from 2010. I only mention it because of you symptoms and because you are looking at the thyroid you may as well look at the adrenal gland. I hope it isn't Tymlos and proves to be a simple fix.

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I have no clue what causes it. I would like to know if this happens to anyone else?

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Profile picture for alidamc @alidamc

I have no clue what causes it. I would like to know if this happens to anyone else?

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Yes, I have been experiencing that as well, I have been taking tymlos 9 months, wasn't sure if related to Tymlos or aging. I sure hope the hair loss and this is worth the bone building. Maybe all will change after the 18 month end period!

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Profile picture for wkruse @wkruse

Yes, I have been experiencing that as well, I have been taking tymlos 9 months, wasn't sure if related to Tymlos or aging. I sure hope the hair loss and this is worth the bone building. Maybe all will change after the 18 month end period!

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@wkruse thanks for your reply. Let’s report new side effects. The first month, I didn’t have any. 2nd month (hair loss), 6 weeks, waking up drenched in the morning. Now at beginning of 3rd month, I get SO hot about after an hour after taking it, I eat or drink something cold. Thinking about changing the time I take it to afternoons instead of bedtime. Waking up drenched is not as often but can happen at any time.
This is new to me because I never had any menopause symptoms. If this is what menopause is like, I was really lucky. I can’t keep the temperature right in my house as fall approaches. It’s old and taking time to warm it up when I need to.
Thanks so much for responding!

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Profile picture for wkruse @wkruse

Yes, I have been experiencing that as well, I have been taking tymlos 9 months, wasn't sure if related to Tymlos or aging. I sure hope the hair loss and this is worth the bone building. Maybe all will change after the 18 month end period!

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@wkruse I just read an article in the Washington Post that says iron deficiency can cause hair loss. Maybe the drug is affecting our iron levels. I am going to ask my PCP if I can start taking it again because I really don’t eat as well as I should.
https://www.hematology.org/newsroom/press-releases/2026/ash-sets-new-standards-for-diagnosing-iron-deficiency

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Profile picture for wkruse @wkruse

Yes, I have been experiencing that as well, I have been taking tymlos 9 months, wasn't sure if related to Tymlos or aging. I sure hope the hair loss and this is worth the bone building. Maybe all will change after the 18 month end period!

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@wkruse my sister, an internist, just told me to try this:
Ferrous gluconate is well tolerated.
Easier on the stomach.
You need at least 27 mg of elemental iron.

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Profile picture for alidamc @alidamc

I have no clue what causes it. I would like to know if this happens to anyone else?

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@alidamc, yes, I have been waking up during the night drenched in sweat but this is one of the minor side effects of Tymlos. I am in my third month and needed to take a two week break since my symptoms were so debilitating. The two week break will end this week so I will try to slowly start taking it again but at an incremental pace. I have severe osteoporosis (-3.7 bmd) so this development is very disappointing if I cannot tolerate Tymlos in the long run. Prayers would be so appreciated. Take care.

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Same here, waking with night sweats, and then times I am freezing. Sweats started a couple months after starting Tymlos. I have always been a little on the freezing side, but more extreme at times now, I hope all of these symptoms will go away after the Tymlos. I am really counting on this med to improve my bones. I guess a small price to pay if it works. Now into month 5. Have not seen any hair loss as some have noted.

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Profile picture for paxbar @paxbar

@alidamc, yes, I have been waking up during the night drenched in sweat but this is one of the minor side effects of Tymlos. I am in my third month and needed to take a two week break since my symptoms were so debilitating. The two week break will end this week so I will try to slowly start taking it again but at an incremental pace. I have severe osteoporosis (-3.7 bmd) so this development is very disappointing if I cannot tolerate Tymlos in the long run. Prayers would be so appreciated. Take care.

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@paxbar I get night sweats as well, but less so if I take the injection earlier in the day. If I inject later into the evening, I have difficulty falling asleep due to overheating and my sleep is not very satisfying.

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Yes, I have been experiencing that as well, but I am also hyperthyroid. I asked PC doctor to have me start HRT. Not sure if he changes his mind, as he ran blood work. I also might need thyroid meds adjust. I have been having hot flashes for twenty years, as soon as I had an ovary removed. Not sure if Tylmos is the cause. But, Tymlos is causing leg and belly swelling.

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