1. < Osteoporosis & Bone Health

I started Forteo 3 mths ago and have bad side affects

Posted by naomikrst @naomikrst, Oct 31, 2023

I started Forteo 3 mths ago and am dealing with bad side affects. I already suffer from chronic ISBD but now have severe diarrhea and have lost 14lbs and every day from the time I wake up until about 2:30 in the afternoon I'm running to the bathroom, it's increased my migraines, I have hair loss, i was taking BP meds before due to high blood pressure but had to stop because now my BP is incredibly low heart rate is high and my BP crashes at least every 2 weeks to 57/37. I already have angina but now because my BP is low I can't take nitro when I'm suffering with chest pains. When I give myself shots I have no problems on the left side but my right side bruises and bleeds every time... These are just some of what I have been dealing with since starting Forteo. Has anyone else experienced anything like this with these shots???? I can't imagine living like this for 2 years!!!

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gently | @gently | Nov 2, 2023
In reply to @naomikrst "So after waiting 4 full days for a response from my Dr, this is the message..." + (show)
@naomikrst

So after waiting 4 full days for a response from my Dr, this is the message that was sent to me in patient portal! To say I'm upset and angry would be an understatement!

Hi Ms. Kristinic. Per Dr. would like for you to keep your follow up and she will discuss your concerns at that time.

---That's her total response to everything I'm dealing with!!! Unreal!!!

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Is this a primary care physician?

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1 reply
naomikrst | @naomikrst | Nov 2, 2023
In reply to @gently "Is this a primary care physician?" + (show)
@gently

Is this a primary care physician?

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No, this is my Metabolic Bone Specialist.

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naomikrst | @naomikrst | Nov 2, 2023
In reply to @gently "Naomi, have you been tested for hyperparathyroidism. Your symptoms, including bone loss, align with the possibility..." + (show)
@gently

Naomi, have you been tested for hyperparathyroidism. Your symptoms, including bone loss, align with the possibility of that there may be trouble with one of your parathyroid glands. taking Forteo or Tymlos would aggravate the condition.
https://www.parathyroid.com/diagnosis.htm#:~:text=Most%20doctors%20are%20not%20very,calcium%20level%20was%20too%20high.
It is worse than sad that you don't have support at home.
If you can't talk to him, don't listen either.

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Does that have to do with thyroids? I had to have my left thyroid removed so I no longer have it. I'm not on any thyroid meds though because after 3 months they were no longer necessary.

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1 reply
naomikrst | @naomikrst | Nov 2, 2023
In reply to @normahorn "If that is the entirety of the response you received, not concurring with your decision to..." + (show)
@normahorn

If that is the entirety of the response you received, not concurring with your decision to quit or even mentioning it, I would find the response completely unacceptable. However, I have to wonder if that was from the doctor or from the nurse. I have limited experience but it seems to me that all too often staff plays gatekeeper inappropriately.

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It stated she was stating what the Dr said. I responded back that I was extremely upset if that was in fact the drs response to everything and showed absolutely no concern regarding what I was going through or that she even in fact cared....which to me is very disturbing!

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naomikrst | @naomikrst | Nov 2, 2023
In reply to @ellymary "Let us know how you resolved your problem." + (show)
@ellymary

Let us know how you resolved your problem.

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I quit the shots, am not going to try any others and will definitely be looking for a new Dr.

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naomikrst | @naomikrst | Nov 2, 2023
In reply to @gently "Naomi, definitely stop the Forteo. It leaves your system quickly, so the effects should resolve withing..." + (show)
@gently

Naomi, definitely stop the Forteo. It leaves your system quickly, so the effects should resolve withing 24hrs. I don't recognize most or the side effects as ones I've heard of before. Which doesn't mean they aren't. It might mean that few are as diligent as you are. You've already earned the badge for valor.
You need a new doctor. Even if the physician has suffered a tragedy preventing a response, the office has not handled your situation appropriately.
I wonder if hyperparathyroidism is causing hypermagnesemia or hypokalemia. Some blood labs might advantage you.
Low blood pressure is definitely an effect of Forteo and that creates a hazard of fainting and falling.
I hope you don't give up on bone meds because there are dangers in the other direction as well.
Best wishes

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So after waiting 4 full days for a response from my Dr, this is the message that was sent to me in patient portal! To say I'm upset and angry would be an understatement!

Hi Ms. Kristinic. Per Dr. would like for you to keep your follow up and she will discuss your concerns at that time.

—That's her total response to everything I'm dealing with!!! Unreal!!!

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gently | @gently | Nov 2, 2023
In reply to @naomikrst "Does that have to do with thyroids? I had to have my left thyroid removed so..." + (show)
@naomikrst

Does that have to do with thyroids? I had to have my left thyroid removed so I no longer have it. I'm not on any thyroid meds though because after 3 months they were no longer necessary.

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Thyroid and Parathyroid are different glands with distinctly separate functions. The four parathyroid glands are embeded on the posterior surface of the thyroid gland, hence the name.
I can't find words for the experience with the metabolic bone specialist. But you've made good decisions about quitting the drug and the doctor.
I'm curious about how fast the adverse symptoms will subside.

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1 reply
cpd54 | @cpd54 | Nov 3, 2023
In reply to @naomikrst "Thank you for commenting and I'm so very very sorry you suffered so much and still..." + (show)
@naomikrst

Thank you for commenting and I'm so very very sorry you suffered so much and still are!!! Prayers for you!!

I have not heard from my Dr. I called them yet again yesterday and they said she was out of the office yesterday but I should hear from her today as soon as she logged into her computer, well they've been open a few hours and no calls and no response on the patient portal. I stopped the shots and I will not try any other shots after this experience! I don't trust anything after everything that happened with this. Again thank you for commenting!

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I stumbled across this Doctor yesterday, Dr Doug Lucas, https://www.optimalbonehealth.com/.Since you’ve had such a horrible experience with drugs and it sounds like you won’t be trying any others, maybe you can get some useful info from him. I personally have chosen the non drug route for treatment and am constantly researching to make sure my course of action is the best that I can do.

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njhornung | @normahorn | Nov 3, 2023

I think many of us will be on pins and needles waiting to hear that your symptoms are starting to abate. You may want to inform your PCP and/or cardiologist of the issues you are experiencing to play it safe.

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vkmov | @vkmov | Nov 3, 2023

What happened? I don’t see your original post.

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