Why this petition?
The media needs to be alerted to this destructive disease, which is often misdiagnosed or ignored as not being severe! It is too common a disease for television, radio, magazines and newspapers to ignore. Those of us who have suffered with this disease and have run from doctor to doctor, being ignored for the seriousness of our symptoms needs to sign this petition, which will then be shared with many in the media to get our voices heard. We do not want others to needlessly suffer like us. The physicians out there need to be educated, especially: Internists, generalists, endocrinologists, cardiologists, orthopedists, psychiatrists and rehabilitation physicians.
What is HPTD?
Hyper PARAthyroid Disease is NOT a RARE disease! Hundreds of thousands of people suffer from this disease, approximately 1 in 500 people, which includes 1 in 200 women over 40. It CAN affect men, as well as individuals under 40. Doctors prefer to treat medical conditions such as: osteoporosis, Vitamin D deficiency, high blood pressure, depression, dementia, heart disease, kidney stones, broken bones and others with drugs, without looking further and discovering that there could be a SERIOUS condition lurking, causing some or all of these symptoms. Some drugs can even cause strokes in victims with HPTD! Even the majority endocrinologists have no clue about this disease. Many physicians want to blame menopause, or say, the phrase, “It’s all in your head.” You have ONE BODY. Get the help you need!
When more people, including physicians discover the multitude of patients who have this disease, it will become something similar to Celiac Disease, which at one time was thought to be extremely rare. In 2013 there are one out of 133 people plagued by CD.
Where do we have PARAthyroids in our body?
What are PARAthyroids…you might ask? We have four tiny (some people actually have more!) PARAthyroids behind our thyroid. It has NOTHING to do with your thyroid. (Many people think they are related, because of the similar name). These tiny glands are the size of a grain of rice-when they are functioning properly. The function of the parathyroids are to regulate calcium in your body and keep it in your bones and other areas, where it is supposed to stay. Calcium is a VITAL component to our bodies, when it is doing what it is supposed to do. Calcium does NOT belong in your kidneys, blood, brain, breasts, etc.
What can go wrong with your parathyroid?
For an unknown reason, sometimes one or more parathyroids become benign (non-cancerous) tumors, called adenomas. These adenomas are thus confusing your endocrine system and they tell the body to move high levels calcium out of the bones and into places where it doesn’t belong, such as your blood stream, brain, etc. The adenomas begin to grow and grow and grow; causing havoc in the body, until they are surgically removed and the ailing person is cured. There is no pill to take for this disease. The only cure and yes, it IS a cure, is to have the adenoma(s) surgically removed. Patients must seek a VERY skilled surgeon, who has done thousands of these parathyroidectomies. A surgeon who only does this minimally invasively, meaning a tiny scar at your neck, must be utilized.
Many people suffer needessly for five, ten, fifteen years, or they can die from this disease, because it was never diagnosed.
What can be done?
Patients have to take care of themselves, being patient active and helping doctors to realize there is a serious disease here. Patients must get the proper treatment, which is to surgically remove the adenoma(s). Get copies of your blood work. ...ALWAYS.
To find out more about this disease go to www.parathyroid.com This site has been written by a surgeon and his team, who ONLY performs this type of surgery and is EXTREMELY knowledgeable about this disease. they do 15 parathyroid surgeries A DAY!
No adult over 40 (and sometimes younger) should EVER have a calcium level (listed as CA on your blood work) in the 10s (2.5 in other countries) repeatedly. Even if the range on your blood work says a higher number! The reason the ranges go often up to 10.5 or 10.7 is because children’s levels are included. Children and young adults have growing bones, they need a high calcium level. Adults have grown their bones and the calcium MUST stay in the bones! Patients with primary HPTD often have VERY low Vitamin D levels and often VERY high calcium in their urine. Again, it has to be HOLLERED….. DOCTORS DO NOT KNOW THIS INFORMATION about this disease! They are EXTREMELY ignorant about HPTD and must be educated by the patient, who suspects they are suffering from it. You must get labs with Calcium (CA), and PTH. Your PTH should not be over 70. Many with this disease have 80 to even 300, which is outrageously high. You do NOT want Vitamin D below 30. Most with this disease have Vit D in the teens.
What are the top symptoms to investigate if you have HPTD?
If you suffer from more than 4 or more of these, ask your doctor to test you for HPTD and check the above-mentioned web site! If your doctor refuses, find another doctor and another until someone will write you prescriptions for the appropriate blood work and more.
Get help If you are suffering from: broken bones, osteopenia, osteoporosis, high blood pressure, kidney-stones, bone pain, depression, lack of energy, foggy headedness, confusion, insomnia, thinning hair, headaches, heart palpitations, and more! Check this page for more details: https://www.parathyroid.com/parathyroid-symptoms.h...
What else should we know about HPTD?
Keep in mind that your blood work (calcium, PTH (parathyroid hormone) and other levels can fluctuate throughout the day and because of what you consume. As the disease proceeds in time, your numbers will just get higher and higher. Often at the beginning of the disease you will still get some results in the normal range. Continue to test at different hours, before food, after food, etc, if you truly feel you have this disease.https://www.parathyroid.com/diagnosis.htm
Is there an online support group?
There are several. Check Facebook.
What do we do with this petition?
Post the link on support group pages, medical related pages, share it with your doctors and other health care practitioners, friends, family, co-workers….everyone you know. The more people who write and tell their story, the better chance we have to expose this disease to the media and beyond, saving lives and helping people to be cured!
Updates
November 23, 2016
One thousand people have signed this and I am feeling the weight of how many of us have been ignored by the medical system. It is exhausting to look at these numbers and realize how widespread this suffering truly is. We have their attention now so we keep pushing forward.
Reached 1,000 supporters
November 22, 2016
November 19, 2016
The exhaustion of fighting for a diagnosis is real but seeing these numbers crawl upward keeps me going. We need to hit one thousand signatures to force the media to finally acknowledge the reality of this disease. Please help me push this forward now.
April 15, 2015
Seeing this grow makes me realize we are finally forcing people to pay attention to a condition they have ignored for far too long. It is exhausting work to keep pushing against this wall of medical indifference but your support keeps me going.
Reached 100 supporters
May 18, 2014
547 Comments
Anyone with this disease should be sorted as soon as possible it would save the NHS MILLIONS OF POUNDS A YEAR. It's a destructive disease so instead of letting it destroy a body by doing a wait and see that won't go away. Remove the problem .
It was quite a journey i was on as i was diagnosed by my primary dr. who sent me to chief of endocrinology and she wanted me come back in two years and my level was 11.0 and not feeling well....Thank God for NPC in Tampa....I am cured!
I suffered for years with this disease at the hands of over 35 doctors over a span of ten years. It left me with high blood pressure, kidney stones, GERD, widespread body pain & less friends. People - including doctors - thought I was a hypochondriac.
Parathyroid disease wrecks lives and yet can very often be easily diagnosed by doctors carrying out simple blood tests. Anyone with vague physical or cognitive symptoms should have their calcium and parathyroid hormone levels tested. One blood draw - simple.
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!
Took a year of suffering to be diagnosed primary hyperthyroidism then put on High Dose of Vitamin D by endocrinologist which add new symptoms and suffering. I then decide to get Norman Parathyroid Center opinion and thanks to Dr Andrew Rhodes who remove 3 malfunctioning adenomas ,on June 1, 2022 I feel perfectly fine 1 month later and my 1 inche scar is really hard to see. Believe your instinct.
It is essential that doctors should be educated about this illness, of which most are unaware even though it exhibits so many varied symptoms & causes much sufffering.
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Why this petition?
The media needs to be alerted to this destructive disease, which is often misdiagnosed or ignored as not being severe! It is too common a disease for television, radio, magazines and newspapers to ignore. Those of us who have suffered with this disease and have run from doctor to doctor, being ignored for the seriousness of our symptoms needs to sign this petition, which will then be shared with many in the media to get our voices heard. We do not want others to needlessly suffer like us. The physicians out there need to be educated, especially: Internists, generalists, endocrinologists, cardiologists, orthopedists, psychiatrists and rehabilitation physicians.
What is HPTD?
Hyper PARAthyroid Disease is NOT a RARE disease! Hundreds of thousands of people suffer from this disease, approximately 1 in 500 people, which includes 1 in 200 women over 40. It CAN affect men, as well as individuals under 40. Doctors prefer to treat medical conditions such as: osteoporosis, Vitamin D deficiency, high blood pressure, depression, dementia, heart disease, kidney stones, broken bones and others with drugs, without looking further and discovering that there could be a SERIOUS condition lurking, causing some or all of these symptoms. Some drugs can even cause strokes in victims with HPTD! Even the majority endocrinologists have no clue about this disease. Many physicians want to blame menopause, or say, the phrase, “It’s all in your head.” You have ONE BODY. Get the help you need!
When more people, including physicians discover the multitude of patients who have this disease, it will become something similar to Celiac Disease, which at one time was thought to be extremely rare. In 2013 there are one out of 133 people plagued by CD.
Where do we have PARAthyroids in our body?
What are PARAthyroids…you might ask? We have four tiny (some people actually have more!) PARAthyroids behind our thyroid. It has NOTHING to do with your thyroid. (Many people think they are related, because of the similar name). These tiny glands are the size of a grain of rice-when they are functioning properly. The function of the parathyroids are to regulate calcium in your body and keep it in your bones and other areas, where it is supposed to stay. Calcium is a VITAL component to our bodies, when it is doing what it is supposed to do. Calcium does NOT belong in your kidneys, blood, brain, breasts, etc.
What can go wrong with your parathyroid?
For an unknown reason, sometimes one or more parathyroids become benign (non-cancerous) tumors, called adenomas. These adenomas are thus confusing your endocrine system and they tell the body to move high levels calcium out of the bones and into places where it doesn’t belong, such as your blood stream, brain, etc. The adenomas begin to grow and grow and grow; causing havoc in the body, until they are surgically removed and the ailing person is cured. There is no pill to take for this disease. The only cure and yes, it IS a cure, is to have the adenoma(s) surgically removed. Patients must seek a VERY skilled surgeon, who has done thousands of these parathyroidectomies. A surgeon who only does this minimally invasively, meaning a tiny scar at your neck, must be utilized.
Many people suffer needessly for five, ten, fifteen years, or they can die from this disease, because it was never diagnosed.
What can be done?
Patients have to take care of themselves, being patient active and helping doctors to realize there is a serious disease here. Patients must get the proper treatment, which is to surgically remove the adenoma(s). Get copies of your blood work. ...ALWAYS.
To find out more about this disease go to www.parathyroid.com This site has been written by a surgeon and his team, who ONLY performs this type of surgery and is EXTREMELY knowledgeable about this disease. they do 15 parathyroid surgeries A DAY!
No adult over 40 (and sometimes younger) should EVER have a calcium level (listed as CA on your blood work) in the 10s (2.5 in other countries) repeatedly. Even if the range on your blood work says a higher number! The reason the ranges go often up to 10.5 or 10.7 is because children’s levels are included. Children and young adults have growing bones, they need a high calcium level. Adults have grown their bones and the calcium MUST stay in the bones! Patients with primary HPTD often have VERY low Vitamin D levels and often VERY high calcium in their urine. Again, it has to be HOLLERED….. DOCTORS DO NOT KNOW THIS INFORMATION about this disease! They are EXTREMELY ignorant about HPTD and must be educated by the patient, who suspects they are suffering from it. You must get labs with Calcium (CA), and PTH. Your PTH should not be over 70. Many with this disease have 80 to even 300, which is outrageously high. You do NOT want Vitamin D below 30. Most with this disease have Vit D in the teens.
What are the top symptoms to investigate if you have HPTD?
If you suffer from more than 4 or more of these, ask your doctor to test you for HPTD and check the above-mentioned web site! If your doctor refuses, find another doctor and another until someone will write you prescriptions for the appropriate blood work and more.
Get help If you are suffering from: broken bones, osteopenia, osteoporosis, high blood pressure, kidney-stones, bone pain, depression, lack of energy, foggy headedness, confusion, insomnia, thinning hair, headaches, heart palpitations, and more! Check this page for more details: https://www.parathyroid.com/parathyroid-symptoms.h...
What else should we know about HPTD?
Keep in mind that your blood work (calcium, PTH (parathyroid hormone) and other levels can fluctuate throughout the day and because of what you consume. As the disease proceeds in time, your numbers will just get higher and higher. Often at the beginning of the disease you will still get some results in the normal range. Continue to test at different hours, before food, after food, etc, if you truly feel you have this disease.https://www.parathyroid.com/diagnosis.htm
Is there an online support group?
There are several. Check Facebook.
What do we do with this petition?
Post the link on support group pages, medical related pages, share it with your doctors and other health care practitioners, friends, family, co-workers….everyone you know. The more people who write and tell their story, the better chance we have to expose this disease to the media and beyond, saving lives and helping people to be cured!
Updates
November 23, 2016
One thousand people have signed this and I am feeling the weight of how many of us have been ignored by the medical system. It is exhausting to look at these numbers and realize how widespread this suffering truly is. We have their attention now so we keep pushing forward.
Reached 1,000 supporters
November 22, 2016
November 19, 2016
The exhaustion of fighting for a diagnosis is real but seeing these numbers crawl upward keeps me going. We need to hit one thousand signatures to force the media to finally acknowledge the reality of this disease. Please help me push this forward now.
April 15, 2015
Seeing this grow makes me realize we are finally forcing people to pay attention to a condition they have ignored for far too long. It is exhausting work to keep pushing against this wall of medical indifference but your support keeps me going.
Reached 100 supporters
May 18, 2014
547 Comments
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.
Anyone with this disease should be sorted as soon as possible it would save the NHS MILLIONS OF POUNDS A YEAR. It's a destructive disease so instead of letting it destroy a body by doing a wait and see that won't go away. Remove the problem .
It was quite a journey i was on as i was diagnosed by my primary dr. who sent me to chief of endocrinology and she wanted me come back in two years and my level was 11.0 and not feeling well....Thank God for NPC in Tampa....I am cured!
I suffered for years with this disease at the hands of over 35 doctors over a span of ten years. It left me with high blood pressure, kidney stones, GERD, widespread body pain & less friends. People - including doctors - thought I was a hypochondriac.
Parathyroid disease wrecks lives and yet can very often be easily diagnosed by doctors carrying out simple blood tests. Anyone with vague physical or cognitive symptoms should have their calcium and parathyroid hormone levels tested. One blood draw - simple.
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!
Took a year of suffering to be diagnosed primary hyperthyroidism then put on High Dose of Vitamin D by endocrinologist which add new symptoms and suffering. I then decide to get Norman Parathyroid Center opinion and thanks to Dr Andrew Rhodes who remove 3 malfunctioning adenomas ,on June 1, 2022 I feel perfectly fine 1 month later and my 1 inche scar is really hard to see. Believe your instinct.
It is essential that doctors should be educated about this illness, of which most are unaware even though it exhibits so many varied symptoms & causes much sufffering.
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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.