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Hyper PARAThyroid Disease-Alert the media!

547 Comments

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Nancy Coughlin
11 years ago

This is such a destructive insidious disease. It can be complex to diagnose. It is curable if diagnosed and treated with surgery.

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Sarah Brown
11 years ago

I am now very aware of this condition, as my mother has it, and I have seen the deteriation and severe pain it has caused. There is a definite need for the symptoms to be more recognised as a person can have it for years without being diagnosed, which obviously leads to an unnecessary further break down of bone density and other related health issues. Doctors usually only study Hyper Parathyroid superficially whilst training, and after seeing the amount of people suffering via the web support group, it is essential that it is given a higher profile to enable prognosis to be given much sooner!

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Sarah Brown
11 years ago

I am now very aware of this condition, as my mother has it, and I have seen the deteriation and severe pain it has caused. There is a definite need for the symptoms to be more recognised as a person can have it for years without being diagnosed, which obviously leads to an unnecessary further break down of bone density and other related health issues. Doctors usually only study Hyper Parathyroid superficially whilst training, and after seeing the amount of people suffering via the web support group, it is essential that it is given a higher profile to enable prognosis to be given much sooner!

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Marcus Saunders
11 years ago

Please investigate this disease now!

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Marcus Saunders
11 years ago

Please investigate this disease now!

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ronnie chapman
11 years ago

Please sign this petion to educate the medical profession in Hyperparathyroidism. Many people suffer for many years, through not being diagnosed, especially by older folk putting down to old age.

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ronnie chapman
11 years ago

Please sign this petion to educate the medical profession in Hyperparathyroidism. Many people suffer for many years, through not being diagnosed, especially by older folk putting down to old age.

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Shirley List
11 years ago

I was diagnosed with hyperparathyroidism in 2005.

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Shirley List
11 years ago

I was diagnosed with hyperparathyroidism in 2005.

G
11 years ago

Had surgery in Dec took years to get someone to listen to me that something was wrong.

G
11 years ago

Had surgery in Dec took years to get someone to listen to me that something was wrong.

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Kimberly Costello
11 years ago

Mine has been going on since 2008, finally have a doctor who too notice of this!!

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Kimberly Costello
11 years ago

Mine has been going on since 2008, finally have a doctor who too notice of this!!

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Glenda Rowland
11 years ago

My primary doctor did not know about hyperparathyroidism until I told her about it. She wanted to watch and wait. My endocrinologist said I did not have a tumor on my parathyroid gland. He said I was not to have surgery until he told me to. I found a surgeon who removed the ademona, 2 lympth nodes and 2 sections from the thyroid in Oct 2013. He did not check the other 3 glands. My PTH was still 107 during and after the surgery. I am still having problems and my PTH is still high, Vit D is still low and the calcium is normal 9.8. I am very frustrated.

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Glenda Rowland
11 years ago

My primary doctor did not know about hyperparathyroidism until I told her about it. She wanted to watch and wait. My endocrinologist said I did not have a tumor on my parathyroid gland. He said I was not to have surgery until he told me to. I found a surgeon who removed the ademona, 2 lympth nodes and 2 sections from the thyroid in Oct 2013. He did not check the other 3 glands. My PTH was still 107 during and after the surgery. I am still having problems and my PTH is still high, Vit D is still low and the calcium is normal 9.8. I am very frustrated.

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Kelly Pratt
11 years ago

I am facing my second surgery and am again having to argue with the doctors and insurance companies. It's very frustrating. My level is 10.7. I was told it was probably because of the calcium I was taking and to wait and see.

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Kelly Pratt
11 years ago

I am facing my second surgery and am again having to argue with the doctors and insurance companies. It's very frustrating. My level is 10.7. I was told it was probably because of the calcium I was taking and to wait and see.

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Susan Essary
11 years ago

I suffered from this horrific disease for several years. I have only one kidney and was slowly losing its function. I had so many painful symptoms that it brought my quality of life to a level I wouldn't wish upon my worst enemy. Sadly, I was dismissed by several doctors. I had to search for two years, after self diagnosing. I had to fly several states away to find a surgeon willing to operate. After the removal of my tumor my kidney function returned to normal within two months, kidney stones and all the horrendous symptoms were gone. Education and awareness is desperately needed for Hyperparathyroidism.

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Susan Essary
11 years ago

I suffered from this horrific disease for several years. I have only one kidney and was slowly losing its function. I had so many painful symptoms that it brought my quality of life to a level I wouldn't wish upon my worst enemy. Sadly, I was dismissed by several doctors. I had to search for two years, after self diagnosing. I had to fly several states away to find a surgeon willing to operate. After the removal of my tumor my kidney function returned to normal within two months, kidney stones and all the horrendous symptoms were gone. Education and awareness is desperately needed for Hyperparathyroidism.

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Carol Hale
11 years ago

The high calcium alerts on my labs were ignored by doctors for many years. One doctor did say that my calcium was high and that it showed him that I was getting plenty of calcium for my bones which would keep them strong. Little did I know that the opposite was actually happening and that the high calcium in my blood was actually due to a Parathyroid tumor in my neck that was causing the calcium to be sucked right out of my bones causing severe osteoporosis and many other symptoms and damage ...to the point that My lifestyle was extremely altered! I had gotten so ill that I knew there was something wrong that obviously was being missed by my doctors. So...I looked up high calcium online (and I know that doctors mostly frown on that ) but I also know that the info I found actually led to my getting a proper diagnosis and the surgery...saving my life! I took the info to my new doctor who actually did know what to check for ..finally ..but had also recently ignored my high calcium alert on my labwork until I brought this to his attention! I then contacted a surgeon who specializes in Parathyroid surgery and I had surgery a short time later to have the tumor removed and get my life back! Doctors need to know more about this disease and stop ignoring lab alerts and realize that the "Wait and Watch" approach is only allowing more damage to occur! There is no cure without removing the tumor!!!