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!!!
J
Janie Lemke
11 years ago
I think this may be the most UNDER-diagnosed disease today. Not only are medical professionals largely unaware of it but the specialists have been taught that it doesn't involve anything but kidney stones and osteoporosis. Talk about lack of information!
J
Janie Lemke
11 years ago
Featured
I think this may be the most UNDER-diagnosed disease today. Not only are medical professionals largely unaware of it but the specialists have been taught that it doesn't involve anything but kidney stones and osteoporosis. Talk about lack of information!
D
Donna
11 years ago
It took a minimum of four years for me to get a diagnosis. I had to do my own research to help myself in obtaining a diagnosis. During my wait, I lost my job from "vague" symptoms and progressively got worse until surgery about a year later. I then joined a support group and learned more about the devastation this disease can cause, and how much longer it takes for some to get diagnosed. I believe that most do not know they even have parathyroid glands in their bodies. It would be nice to get the word out and draw attention to this disease, so many whose lives are being upended by it can find help much sooner. Awareness is key. We need to remind doctors of the brief training they received about these glands, because there are many who suffer from different diseases related to the parathyroids -- not just those with pHPT. Sometimes, that little reminder can be the "Aha!" moment for which patients are waiting!
C
Cat Nnaegbunam
11 years ago
I have lupus and now this. Several symptoms are the same but feel different. My doctor listened and am waiting for my specialist appt.
I am sure another doctor might have told me it was lupus
C
Cat Nnaegbunam
11 years ago
I have lupus and now this. Several symptoms are the same but feel different. My doctor listened and am waiting for my specialist appt.
I am sure another doctor might have told me it was lupus
A
Angels reynolds
11 years ago
Please help us! I've had 2 unsuccessful surgeries and they still cannot locate my parathyroid. I haven't been able to work and I've lost everything! This disease is killing me slowly!
A
Angels reynolds
11 years ago
Please help us! I've had 2 unsuccessful surgeries and they still cannot locate my parathyroid. I haven't been able to work and I've lost everything! This disease is killing me slowly!
P
Penny Robertson
11 years ago
I had a large tumor removed from my parathyroid December 11, 2014 after suffering for years with chronic fatigue, depression, anxiety, shaking inside osteopenia, hair lose, kidney stones "fibromyalgia" and various other issues. I told my doctor for years there is something wrong and I was on high doses of Vitamin D and even with high calcium levels they continued to look for other causes went through every test they could think of to rule out cancer. I saw a total of eight (8) doctors until finally I found on line Parathyroid.com. Two surgeons (having a kidney stone removed in Florida while on vacation) did tell me it was my parathyroid June 2, 2014. I contacted the NPC myself or I would still be dealing with an endocrinologist and my family doctor going the same route. This disease is very devastating, causing you to not want to live because your quality of makes you feel what is the use. I have and will continue to try to enlighten others about this "rare" disease that is so much overlooked. After surgery I had to see one of my doctors about something else and talked to him about it and he did say to me I think we misdiagnose this often, I agreed. I didn't tell my doctors about the depression and/or anxiety and this doctor (after surgery) asked why not. I told him you would have wanted to medicate me for it and he said "you are right". I didn't need medicated I told him, I needed an answer and help. Thank you for helping get the word out, you just might help save a life.
P
Penny Robertson
11 years ago
I had a large tumor removed from my parathyroid December 11, 2014 after suffering for years with chronic fatigue, depression, anxiety, shaking inside osteopenia, hair lose, kidney stones "fibromyalgia" and various other issues. I told my doctor for years there is something wrong and I was on high doses of Vitamin D and even with high calcium levels they continued to look for other causes went through every test they could think of to rule out cancer. I saw a total of eight (8) doctors until finally I found on line Parathyroid.com. Two surgeons (having a kidney stone removed in Florida while on vacation) did tell me it was my parathyroid June 2, 2014. I contacted the NPC myself or I would still be dealing with an endocrinologist and my family doctor going the same route. This disease is very devastating, causing you to not want to live because your quality of makes you feel what is the use. I have and will continue to try to enlighten others about this "rare" disease that is so much overlooked. After surgery I had to see one of my doctors about something else and talked to him about it and he did say to me I think we misdiagnose this often, I agreed. I didn't tell my doctors about the depression and/or anxiety and this doctor (after surgery) asked why not. I told him you would have wanted to medicate me for it and he said "you are right". I didn't need medicated I told him, I needed an answer and help. Thank you for helping get the word out, you just might help save a life.
P
Patricia Marie
11 years ago
.
P
Patricia Marie
11 years ago
.
P
Pia Thind
11 years ago
Denmark
P
Pia Thind
11 years ago
Denmark
D
Doreen Henahan-Bryan
11 years ago
I have suffered horribly with this disease for 20 years. Had there been more research and education on it, I and millions like me, wouldn't have had to, and still have to, suffer like this!
D
Doreen Henahan-Bryan
11 years ago
I have suffered horribly with this disease for 20 years. Had there been more research and education on it, I and millions like me, wouldn't have had to, and still have to, suffer like this!
A
Angie Ford
11 years ago
Memphis, TN
A
Angie Ford
11 years ago
Memphis, TN
L
lisa brashear
12 years ago
it would not be ignored if a drug could cure it. We suffer because drug companies cant make money from it.
E
Ellinor Storjord
12 years ago
Parathyroid disease is not very known here in Norway. I whish i had more information about this desease.
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!!!
I think this may be the most UNDER-diagnosed disease today. Not only are medical professionals largely unaware of it but the specialists have been taught that it doesn't involve anything but kidney stones and osteoporosis. Talk about lack of information!
I think this may be the most UNDER-diagnosed disease today. Not only are medical professionals largely unaware of it but the specialists have been taught that it doesn't involve anything but kidney stones and osteoporosis. Talk about lack of information!
It took a minimum of four years for me to get a diagnosis. I had to do my own research to help myself in obtaining a diagnosis. During my wait, I lost my job from "vague" symptoms and progressively got worse until surgery about a year later. I then joined a support group and learned more about the devastation this disease can cause, and how much longer it takes for some to get diagnosed. I believe that most do not know they even have parathyroid glands in their bodies. It would be nice to get the word out and draw attention to this disease, so many whose lives are being upended by it can find help much sooner. Awareness is key. We need to remind doctors of the brief training they received about these glands, because there are many who suffer from different diseases related to the parathyroids -- not just those with pHPT. Sometimes, that little reminder can be the "Aha!" moment for which patients are waiting!
I have lupus and now this. Several symptoms are the same but feel different. My doctor listened and am waiting for my specialist appt. I am sure another doctor might have told me it was lupus
I have lupus and now this. Several symptoms are the same but feel different. My doctor listened and am waiting for my specialist appt. I am sure another doctor might have told me it was lupus
Please help us! I've had 2 unsuccessful surgeries and they still cannot locate my parathyroid. I haven't been able to work and I've lost everything! This disease is killing me slowly!
Please help us! I've had 2 unsuccessful surgeries and they still cannot locate my parathyroid. I haven't been able to work and I've lost everything! This disease is killing me slowly!
I had a large tumor removed from my parathyroid December 11, 2014 after suffering for years with chronic fatigue, depression, anxiety, shaking inside osteopenia, hair lose, kidney stones "fibromyalgia" and various other issues. I told my doctor for years there is something wrong and I was on high doses of Vitamin D and even with high calcium levels they continued to look for other causes went through every test they could think of to rule out cancer. I saw a total of eight (8) doctors until finally I found on line Parathyroid.com. Two surgeons (having a kidney stone removed in Florida while on vacation) did tell me it was my parathyroid June 2, 2014. I contacted the NPC myself or I would still be dealing with an endocrinologist and my family doctor going the same route. This disease is very devastating, causing you to not want to live because your quality of makes you feel what is the use. I have and will continue to try to enlighten others about this "rare" disease that is so much overlooked. After surgery I had to see one of my doctors about something else and talked to him about it and he did say to me I think we misdiagnose this often, I agreed. I didn't tell my doctors about the depression and/or anxiety and this doctor (after surgery) asked why not. I told him you would have wanted to medicate me for it and he said "you are right". I didn't need medicated I told him, I needed an answer and help. Thank you for helping get the word out, you just might help save a life.
I had a large tumor removed from my parathyroid December 11, 2014 after suffering for years with chronic fatigue, depression, anxiety, shaking inside osteopenia, hair lose, kidney stones "fibromyalgia" and various other issues. I told my doctor for years there is something wrong and I was on high doses of Vitamin D and even with high calcium levels they continued to look for other causes went through every test they could think of to rule out cancer. I saw a total of eight (8) doctors until finally I found on line Parathyroid.com. Two surgeons (having a kidney stone removed in Florida while on vacation) did tell me it was my parathyroid June 2, 2014. I contacted the NPC myself or I would still be dealing with an endocrinologist and my family doctor going the same route. This disease is very devastating, causing you to not want to live because your quality of makes you feel what is the use. I have and will continue to try to enlighten others about this "rare" disease that is so much overlooked. After surgery I had to see one of my doctors about something else and talked to him about it and he did say to me I think we misdiagnose this often, I agreed. I didn't tell my doctors about the depression and/or anxiety and this doctor (after surgery) asked why not. I told him you would have wanted to medicate me for it and he said "you are right". I didn't need medicated I told him, I needed an answer and help. Thank you for helping get the word out, you just might help save a life.
.
.
Denmark
Denmark
I have suffered horribly with this disease for 20 years. Had there been more research and education on it, I and millions like me, wouldn't have had to, and still have to, suffer like this!
I have suffered horribly with this disease for 20 years. Had there been more research and education on it, I and millions like me, wouldn't have had to, and still have to, suffer like this!
Memphis, TN
Memphis, TN
it would not be ignored if a drug could cure it. We suffer because drug companies cant make money from it.
Parathyroid disease is not very known here in Norway. I whish i had more information about this desease.