The hours, days and years we spend advocating for ourselves all while in pain are ignored. Our numbers and symptoms must align perfectly within the parameters of set medical guidelines or we are left to suffer. This is unconscionable in modern medicine.
E
Elizabeth Cummings
7 years ago
This disease affects quality of life in so many ways and is so often not recognised or acted on by the medical profession.
S
Sharon Brice
7 years ago
Have got this.
So many strange/ odd symptoms. It's so debilitating and affects every part of your life. Life is a constant struggle
J
Jayne Wright
7 years ago
This terrible disease undiagnosed costs the NHS thousands. The personal losses of the joy of life and being robbed of decades of wellness are hard to take when a simple blood test could have alerted Drs (Calcium/PTH) for me years ago. We need to raise the profile as all symptoms are different if different people. I nearly lost my baby too! Wake up doctors!
D
Deborah Ashby
7 years ago
This needs putting out there.
D
Denise wilson
7 years ago
Terrible how you have to fight for operation
J
Jackie Moss
7 years ago
Not enough awareness, professionals not taking it seriously and ignoring or playing down symptoms, it’s like a living nightmare and very frustrating
S
Susan Williams
7 years ago
I have this disease. Healthcare professionals know virtually nothing about it. It has made me sicker fighting to get treatment. I have been treated abysmally by the people who are meant to help me. 17 months of fighting for a parathyroidectomy so far. No end in sight. Early surgery is the ONLY way forward without this horrendous pre-fight. Sufferers of parathyroid disease know more about the disease than those from whom they seek treatment. It is soul destroying. It is a breach of human rights (article 2 - right to life and be protected from neglect) to continually delay treatment for sufferers putting their lives at risk (the duration of time someone has this disease ensures disease progression - NOT the mythical & incorrect use of trying to get blood calcium levels to hit >2.85mmol/L). This is neglect on a grand scale. Raising awareness & changing current practice needs to be immediate. They're making us suffer needlessly & killing many of us. This needs to stop now. They need to be accountable for what they have done. Ignorance about this disease is no excuse. All the sufferers of the disease tend to find out about it. It's about time the highly paid endocrinologists & surgeons pulled their fingers out & did some research.
A
Anita Reilly
7 years ago
I was diagnosed 8 years ago and just forgotten about! No explanations and symptoms are making my life hell. I’m having to go through the whole process again when I could have been cured 8 years ago! Please stop this!
J
Jenna McLaughlin
7 years ago
I went misdiagnosed for 20 years. Finally noticed my calcium was high when I checked my own blood tests and googled what that meant. My endo never said anything and my blood calcium was over 11.
A
Anonymous
7 years ago
After high calcium levels were first spotted on a blood test in 2017, I’ll be having surgery to remove a 2cm adenoma on Monday. I count myself among the lucky ones that it’s only taken 18 months to get to this stage.
K
Kristin Thompson
7 years ago
This disease is REAL and DEADLY! Wake up doctors! Your patients ARE SUFFERING UNTIL YOU FIGURE OUT HOW TO TREAT THEM. MOST patients have already done the work for you. LISTEN TO THEM!
A
Anonymous
7 years ago
Misdiagnosed for 20 yrs with this! Thousands of medications taken for each symptom! Loss of job - labelled a hypochondriac!! Horrendous disease and a wasted life! Some symptoms climbed to dangerous levels BP for just one!! This disease for all doctors needs to back in the classroom - NOT ENOUGH education or how to read blood results properly!!!!!!! Guidelines need to changed and fast!!!!! This disease can and does kill it affects every single part of the body. Not one place is spared!! More education is a must for the medics!
J
Jayne
7 years ago
I am still recovering from the operation and the fall out caused by this disease. Undiagnosed for 15 years plus! I want to save others from this terrible illness and raise the profile!
A
Anonymous
7 years ago
I had hyperparathyroidism for probably as long as 35 years when my kidney stones began. Doctors ignored me when I told them something was not right for all my adult years. My records of high Ca go back to 2004 as far back as I can obtain my records. It wasn’t until 2014 that my Ca was flagged. It took 3 more years to get surgery. My military dr refused to refer me even though my nephrologist, endocrinologist, and ENT referred me. He said, “You WILL not have surgery!” I finally had to move to FL where I was referred by a military doctor and was able to have my surgery in Nov 2017 at the Norman Parathyroid Center.
It’s been a year and although I’m cured, my body still suffers from the effects of the disease. The disease is progressive.
I had appendicitis, aortic calcifications, chronic kidney stones, a foot fracture that took over a year to heal, optic nerve damage, severe dental loss, hair loss, bone pain, joint calcifications, as well as brain fog, extreme fatigue, and pain. It is a wonder I didn’t die.
G
Gordon Mcleod
7 years ago
It took us 8 years to get our teenage daughter diagnosed .You have to fight all the way too
K
Karen Tindall
7 years ago
The operation should be classed as urgent and we should not have to wait months and months
F
Fiona
7 years ago
My mums been cured from this and the results are astonishing dispite being let down from the uk she battled on and the usa gave her her life back forever grateful wise up uk
M
Mohair I Kennedy
7 years ago
I’m with you folks.
J
Jessica
7 years ago
My fiancé has this deadly disease, desperately want the surgery for him, but have no where near 15 grand & im sure they don't take Medicaid in Tampa..we would go there if we could tho...this disease is ruining our life...
The hours, days and years we spend advocating for ourselves all while in pain are ignored. Our numbers and symptoms must align perfectly within the parameters of set medical guidelines or we are left to suffer. This is unconscionable in modern medicine.
This disease affects quality of life in so many ways and is so often not recognised or acted on by the medical profession.
Have got this. So many strange/ odd symptoms. It's so debilitating and affects every part of your life. Life is a constant struggle
This terrible disease undiagnosed costs the NHS thousands. The personal losses of the joy of life and being robbed of decades of wellness are hard to take when a simple blood test could have alerted Drs (Calcium/PTH) for me years ago. We need to raise the profile as all symptoms are different if different people. I nearly lost my baby too! Wake up doctors!
This needs putting out there.
Terrible how you have to fight for operation
Not enough awareness, professionals not taking it seriously and ignoring or playing down symptoms, it’s like a living nightmare and very frustrating
I have this disease. Healthcare professionals know virtually nothing about it. It has made me sicker fighting to get treatment. I have been treated abysmally by the people who are meant to help me. 17 months of fighting for a parathyroidectomy so far. No end in sight. Early surgery is the ONLY way forward without this horrendous pre-fight. Sufferers of parathyroid disease know more about the disease than those from whom they seek treatment. It is soul destroying. It is a breach of human rights (article 2 - right to life and be protected from neglect) to continually delay treatment for sufferers putting their lives at risk (the duration of time someone has this disease ensures disease progression - NOT the mythical & incorrect use of trying to get blood calcium levels to hit >2.85mmol/L). This is neglect on a grand scale. Raising awareness & changing current practice needs to be immediate. They're making us suffer needlessly & killing many of us. This needs to stop now. They need to be accountable for what they have done. Ignorance about this disease is no excuse. All the sufferers of the disease tend to find out about it. It's about time the highly paid endocrinologists & surgeons pulled their fingers out & did some research.
I was diagnosed 8 years ago and just forgotten about! No explanations and symptoms are making my life hell. I’m having to go through the whole process again when I could have been cured 8 years ago! Please stop this!
I went misdiagnosed for 20 years. Finally noticed my calcium was high when I checked my own blood tests and googled what that meant. My endo never said anything and my blood calcium was over 11.
After high calcium levels were first spotted on a blood test in 2017, I’ll be having surgery to remove a 2cm adenoma on Monday. I count myself among the lucky ones that it’s only taken 18 months to get to this stage.
This disease is REAL and DEADLY! Wake up doctors! Your patients ARE SUFFERING UNTIL YOU FIGURE OUT HOW TO TREAT THEM. MOST patients have already done the work for you. LISTEN TO THEM!
Misdiagnosed for 20 yrs with this! Thousands of medications taken for each symptom! Loss of job - labelled a hypochondriac!! Horrendous disease and a wasted life! Some symptoms climbed to dangerous levels BP for just one!! This disease for all doctors needs to back in the classroom - NOT ENOUGH education or how to read blood results properly!!!!!!! Guidelines need to changed and fast!!!!! This disease can and does kill it affects every single part of the body. Not one place is spared!! More education is a must for the medics!
I am still recovering from the operation and the fall out caused by this disease. Undiagnosed for 15 years plus! I want to save others from this terrible illness and raise the profile!
I had hyperparathyroidism for probably as long as 35 years when my kidney stones began. Doctors ignored me when I told them something was not right for all my adult years. My records of high Ca go back to 2004 as far back as I can obtain my records. It wasn’t until 2014 that my Ca was flagged. It took 3 more years to get surgery. My military dr refused to refer me even though my nephrologist, endocrinologist, and ENT referred me. He said, “You WILL not have surgery!” I finally had to move to FL where I was referred by a military doctor and was able to have my surgery in Nov 2017 at the Norman Parathyroid Center. It’s been a year and although I’m cured, my body still suffers from the effects of the disease. The disease is progressive. I had appendicitis, aortic calcifications, chronic kidney stones, a foot fracture that took over a year to heal, optic nerve damage, severe dental loss, hair loss, bone pain, joint calcifications, as well as brain fog, extreme fatigue, and pain. It is a wonder I didn’t die.
It took us 8 years to get our teenage daughter diagnosed .You have to fight all the way too
The operation should be classed as urgent and we should not have to wait months and months
My mums been cured from this and the results are astonishing dispite being let down from the uk she battled on and the usa gave her her life back forever grateful wise up uk
I’m with you folks.
My fiancé has this deadly disease, desperately want the surgery for him, but have no where near 15 grand & im sure they don't take Medicaid in Tampa..we would go there if we could tho...this disease is ruining our life...