Undiagnosed for more than 15 years! Every possible symptom except high blood pressure. Will be checking BP again this week .....
M
Martha Lennon
10 years ago
I've had 2 surgeries already, and a host of problems.
K
Kristi De
10 years ago
my calcium has been increasing steadily for 12 months. i am the one who pointed it out. they say, "it's not that high" at 10.7...!!! they want me to take calcium and vitamin d for my ostopenia...!!! HELP!!!
L
Lynda R De Casse
10 years ago
I am currently living with hyperPARAthyroidism for the 2nd time in my life for over 2years now. As a result I know have papillary thyroid cancer. More research & awareness of this disease is crucial. Obviously the doctors don't know enough about this disease or just don't take it seriously enough to do anything about a cure. The fact that I was told the first time I was diagnosed that my surgery would cure me was not true. This disease is fatal & should be treated as seriously as cancer & needs to be a broadcast globally as to the severity of it's consequences.
A
Anonymous
10 years ago
September 2015 I had never heard of this disease but was diagnosed with it after visiting the GP with extreme exhaustion and lack of drive. I'm still waiting for my op and the 7 week follow up for test results with my endocrinologist isn't until 12th August five and a half months later.
G
Gemma Curtis
10 years ago
I was left to deal with my symptoms and the lowest vitamin D (4) my GP had ever seen. For at least 10, possibly 15 years I have put up with this disease and my doctors failed to investigate why I was unwell. 3 months ago I had an adenoma 100 times larger than a typical adenoma removed. I'm still recovering with my symptoms eased up a little. This disease ruins lives. It takes away the joy of living and everything mentally, emotionally & physically becomes a struggle.Doctors do not understand it. Keep persisting with blood tests and always get a 2nd or 3rd opinion if you feel like you are being pushed aside.
D
David Coates
10 years ago
Having been an undiagnosed sufferer of HPTd for 20 years I have first hand knowledge of how it destroys families, careers and ongoing health problems the longer it is left and often misdiagnosed!
S
Sharon Williams
10 years ago
People are suffering because the medical profession is uninformed and frequently misdiagnose Hyperparathyroidism as other illnesses. This needs to be made more aware of and taken just as seriously as Cancer, Diabetes, etc.. Thank you
A
Anonymous
10 years ago
Great way to spread the word!
S
Sharon Williams
10 years ago
Please educate the medical professionals
T
Theresa Ahern
10 years ago
Hello, I was very ill with this disease for 5 years. My husband had to stop working as a police officer to take care of me. All my past doctors tested my calcium, and even though it came out high, they never looked further and always said I was fine, that my blood tests were"normal ". It was after I moved to a new state and found another new doctor, that I wasI was diagnosed with a parathyroid tumor. I had it removed last week in Tampa, Florida. I already feel 100% better. Please help prevent the suffering of others due to this horrific disease. Thank you.
S
Susan Saraiva
10 years ago
We must continue to educate. This disease is not as rare as once thought and taught in medical school. It is insidious,debilitating and wreaks havoc on multiple systems in the body while stealing one's ability to enjoy life.
K
kay halliday
10 years ago
UK citizen
P
Penny nolan
10 years ago
Living in Ireland.
M
maggie bowers
10 years ago
I have suffered from this debilitating condition for over 10 yrs with my PTH slowly rising till it is now 12. Vit D low, sometime severely. Calcium on borderline and because of this I am treated with contempt by Endogrinologist. All they want to do is treat me with Vit.D supplements even though my GP & Rheumatologist have verified that I am unable to tolerate these because they make my Calcium levels rise!! Think the way me & my fellow sufferers around the world are treated is a scandal. Please 'experts' stop being so arrogant & listen.
M
Marina bBowen
10 years ago
Start seeing the symptoms not just numbers
K
Kristen eshom
10 years ago
Very interesting
K
Karen Griffin
10 years ago
I am a sufferer of this disease and believe doctors don't understand the symptoms and treatment fully.
A
Alice Griffin
10 years ago
I have this disease and it is extremely violent and painful. If I had known earlier of my diagnosis, then maybe I could have had surgery earlier to remove the parathyroid.
I suffer from this disease
Undiagnosed for more than 15 years! Every possible symptom except high blood pressure. Will be checking BP again this week .....
I've had 2 surgeries already, and a host of problems.
my calcium has been increasing steadily for 12 months. i am the one who pointed it out. they say, "it's not that high" at 10.7...!!! they want me to take calcium and vitamin d for my ostopenia...!!! HELP!!!
I am currently living with hyperPARAthyroidism for the 2nd time in my life for over 2years now. As a result I know have papillary thyroid cancer. More research & awareness of this disease is crucial. Obviously the doctors don't know enough about this disease or just don't take it seriously enough to do anything about a cure. The fact that I was told the first time I was diagnosed that my surgery would cure me was not true. This disease is fatal & should be treated as seriously as cancer & needs to be a broadcast globally as to the severity of it's consequences.
September 2015 I had never heard of this disease but was diagnosed with it after visiting the GP with extreme exhaustion and lack of drive. I'm still waiting for my op and the 7 week follow up for test results with my endocrinologist isn't until 12th August five and a half months later.
I was left to deal with my symptoms and the lowest vitamin D (4) my GP had ever seen. For at least 10, possibly 15 years I have put up with this disease and my doctors failed to investigate why I was unwell. 3 months ago I had an adenoma 100 times larger than a typical adenoma removed. I'm still recovering with my symptoms eased up a little. This disease ruins lives. It takes away the joy of living and everything mentally, emotionally & physically becomes a struggle.Doctors do not understand it. Keep persisting with blood tests and always get a 2nd or 3rd opinion if you feel like you are being pushed aside.
Having been an undiagnosed sufferer of HPTd for 20 years I have first hand knowledge of how it destroys families, careers and ongoing health problems the longer it is left and often misdiagnosed!
People are suffering because the medical profession is uninformed and frequently misdiagnose Hyperparathyroidism as other illnesses. This needs to be made more aware of and taken just as seriously as Cancer, Diabetes, etc.. Thank you
Great way to spread the word!
Please educate the medical professionals
Hello, I was very ill with this disease for 5 years. My husband had to stop working as a police officer to take care of me. All my past doctors tested my calcium, and even though it came out high, they never looked further and always said I was fine, that my blood tests were"normal ". It was after I moved to a new state and found another new doctor, that I wasI was diagnosed with a parathyroid tumor. I had it removed last week in Tampa, Florida. I already feel 100% better. Please help prevent the suffering of others due to this horrific disease. Thank you.
We must continue to educate. This disease is not as rare as once thought and taught in medical school. It is insidious,debilitating and wreaks havoc on multiple systems in the body while stealing one's ability to enjoy life.
UK citizen
Living in Ireland.
I have suffered from this debilitating condition for over 10 yrs with my PTH slowly rising till it is now 12. Vit D low, sometime severely. Calcium on borderline and because of this I am treated with contempt by Endogrinologist. All they want to do is treat me with Vit.D supplements even though my GP & Rheumatologist have verified that I am unable to tolerate these because they make my Calcium levels rise!! Think the way me & my fellow sufferers around the world are treated is a scandal. Please 'experts' stop being so arrogant & listen.
Start seeing the symptoms not just numbers
Very interesting
I am a sufferer of this disease and believe doctors don't understand the symptoms and treatment fully.
I have this disease and it is extremely violent and painful. If I had known earlier of my diagnosis, then maybe I could have had surgery earlier to remove the parathyroid.