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Sunday, September 20, 2009 Shirley asks

Q: Is Forteo treament of choice with an elevated PHL?

I saw an endocrinologist for two years with chief complaint of elevated PHL and vitamin D deficiency.  I also had progressive osteoporosis.  For two years I was placed on a high dose of Vitamin D with bloodwork done about every 3-4 months to check my PHL which always was high.  This doctor told me no need to worry too much about taking Calcium because my body was unable to absorb it due to my high PHL.  They did scans on my parathyroid to check for anything abnormal.  They could find nothing on the scan.  He then suggested that I have "exploratory" surgery on my parathyroid glands to see if they could locate the malfunctioning parathyroid gland's'.  My doctor left this clinic, and I saw another doctor within the same group.  The new doctor told me that I did not have osteoporosis, and for me just to stay on the Vitamin D.  This doctor also told me that my PHL was now normal!  Normal?  It had been abnormal 4 months prior.  I questioned him about this and he seemed to be very ill at ease and nervous.  I then decided that I  would find another doctor.  I saw this  doctor last week.  His advice to me is to remain on a high dosage of VitaminD, along  with 1200 mg. of Calcium per day.  He also wants me to start on Forteo, even though my PHL is still elevated. He acted as though this was of no great significance.  So, I am completely confused about what treatment would be best for me.  In the meantime, my condition continues to deteriorate, and I am in excruciating pain 24/7.  I also have scoliosis and fibromyalgia.

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Answers (1)
Pam Flores, Health Guide
9/21/09 2:12pm

Hi Shirley, welcome and thanks for your question.  I must admit I'm as confused as you.  Do you have osteoporosis?  You said one Dr. claimed you didn't.  As you know, Forteo is prescribed for those with established (severe) osteoporosis or a pre-existing fracture.

 

I'm not a health professional, so I would try to get another, yes another opinion.  I don't know if elevated PTH (parathyroid hormone) would have an affect on this treatment.  If you have elevated calcium then they would re-evaluate their decision to use Forteo because this treatment can cause elevated calcium "in some."  Only a Dr. can answer this question about your PTH levels. 

 

Can you contact the surgeon who did the exploratory surgery on your parathyroid gland and ask this question?

 

You could also try calling Eli Lily (manufacturer of Forteo) and ask them, but I suspect they'll just tell you to ask your Dr. this question.

 

Let us know what you find out since this is a very interesting question and one I never dealt with before.

 

Here's a link to the Cleveland Clinic on Forteo if you want to read who should or shouldn't take this drug.  However, you're still going to need an answer from a Dr. that is familiar with elevated PTH and Forteo use.

 

Good luck...Smile

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By Shirley— Last Modified: 12/26/10, First Published: 09/20/09