Prolia and Parathyroidectomy

[ramrine]

Hi All.

My wife is T2 diabetic, hypothyroid and was diagnosed with osteopenia in 2014.

She started on Prolia in 2014.

We are at year six so injection # 12 coming up.

I have read that Prolia reduces calcium from the

the blood and bones. Approximately five months ago we were told she needed one of her four parathyroids removed as it was enlarged and putting too much calcium in her blood and bones.

My question is has anyone else on Prolia required a parathyroidectomy?

Also any opinion on whether Prolia can indirectly make the parathyroid work so hard to create enough calcium to replace what Prolia removes that one or more parathyroids must be removed?

No family history of parathyroid problems or Prolia use.

I appreciate any comments!

[elaine2447]

I am very sorry to hear about your wife. I am presuming you are in the US as she has had a diagnosis of phpt and will go ahead with the operation. I cannot imagine Prolia causing the parathryoid glands to overwork. The surgeon who is performing the operation should know but if you are in the UK, that's a different matter. Sadly there is a lot of ignorance about this here. I am surprised, even shocked to learn she was given Prolia with osteopenia. I presume you know that the FDA gave out a warning in January 2017 that if left off, can cause rapid bone loss which can lead to rebound fractures.

I am sorry I cannot answer your question but it might be worth contacting Dr Larian who is an expert in phpt and resides in LA or perhaps Dr Norman at the NPC in Florida.

[ramrine in reply to elaine2447]

Thanks for you response. Yes we are in the US. The parathyroid surgery was last Nov.

We will have a bone density test next week and have been told that if we stop taking Prolia that we must take a med for up to a year to safely stop the effects of the drug.

I plan to quiz the Dr about the calcium drain from Prolia potentially at the root cause of the overactive parathyroid.

My wife was full of energy up until seven months ago but now has so much fatigue

She must rest after the smallest task.

[elaine2447 in reply to ramrine]

I hope you find some answers. I imagine your wife has had all the blood tests like ferritin, folate etc. Are they keeping a check on her pth and calcium still, also vit D?

[ramrine in reply to elaine2447]

Yes. Her endocrinologist checks her blood for these and others every three months so very important we have learned!

[elaine2447 in reply to ramrine]

Although the parathyroids are nothing to do with the thyroid, I have heard several people complain that after a parathryoidectomy it has messed up their thryoid. Maybe check it out and see if she has become hypothryoid which would make your wife feel very tired or even check for peroxidase antibodies to see if she has Hashimotos. I have that and I feel exhausted most of the time. Some endocrinologist just look at the TSH and T4 and say oh yes within the normal range. I had a very expensive private endo in London who was totally useless, I thought I was going mad with terrible symptoms for 13 weeks but my TSH and T4 and T3 were "within the normal range" (one of the most hated medical expressions in the UK at least) but it never occurred to her to check my antibodies which were done latterly by another person and they were over >1300 (normal range is 0 - 60). Good luck

[ramrine in reply to elaine2447]

Thanks for your comments. She was diagnosed as hypothyroid about 23 yrs ago. She does take Synthroid each morning and her labs reflect an acceptable A1C. She only came down with the fatigue problem about seven months ago. I will ask about the antibodies testing. That is an interesting approach we had not considered!

Cheers!

[angryandfrustrated]

I think there is way too much about Prolia that they just don't know. It has not been studied very long. After 3 injections I have Osteonecrosis of the jaw bone. It has been 9 months and sizable amounts of dental bills. It appears possibly still active, and may exist the rest of my life - they just don't know! I currently worry about the rebound effect from going off Prolia. Other drugs were considered, but because of my jaw condition they are reluctant. I'm having hip replacement surgery next Friday, and praying I don't fracture.

Prolia is EVIL, and should be removed from the market.

[ramrine in reply to angryandfrustrated]

I am so sorry to hear about your health

problems. I too am concerned that Prolia

may be the root cause.

I wish you well on your journey to restoring your health.

[angryandfrustrated in reply to ramrine]

Thank you.

[elaine2447 in reply to angryandfrustrated]

Very sorry to hear that and yes you are right about Prolia being evil. Amgen have now brought out another new drug recently approved by the FDA Evenity. It sounds equally as lethal and can cause heartaches and strokes.

Everything is about power and money. I believe Merck still have many outstanding law suits for the damage Fosimax had. Now their license has expired even more companies jumping on the bandwagon with bisphosphonates.

I really hope your jaw will heal.

[angryandfrustrated in reply to elaine2447]

Me too, Thank you.

[sweetsusie]

Prolia and all other bones meds. should be taken off the market. I'm so sorry your wife is having to go through this, and do not understand why her doctor felt the need to get her on this crap for osteopenia! Just ridiculous! She needs to stop it immediately, but she will have to go on another kind of bone med. to eliminate the risk of rebound fractures, and hopefully that will work. Gads! This drives me crazy!!!

[Jayge]

No problems for me with parathyroid.

[HeronNS]

nof.org/patients/treatment/...

For anyone reading this post now - calcium levels need to be optimized before taking Prolia, or any bisphosphonates, or the condition of low calcium will worsen.