To raise awareness and advocate for improvement in diagnosis and standards for surgical treatment of primary hyperparathyroid disease.
To inspire patients, doctors and mental health care professionals to become educated about the symptoms, diagnostic process and the risks associated with the “wait and see” approach, as well as advocate for the most advanced surgical techniques available to become the standard of care.
We are working to create change so that….
- Primary hyperparathyroid disease is clearly understood by the medical and mental health communities and is considered as a possible root cause when physical and/or mental symptoms associated with the disease are present.
- Medical professionals are familiar with the various biochemical presentations and associated symptoms.
- Appropriate blood tests are ordered and values are properly evaluated to determine if calcium is high and outside of the tight range that is considered normal and/or parathyroid hormone levels are elevated.
- Normal range for calcium values are consistent from lab to lab and take into consideration a patients age when reporting values.
- The asymptomatic label is lifted and the wide range of symptoms patients do experience will be recognized as being related to pHPT.
- Medical professional are educated and clearly understand that those patients labeled as asymptomatic, as well as symptomatic patients, benefit from surgery.
- The medical community is aware of the most advanced surgical techniques available to perform parathyroidectomies and surgeons are highly trained to execute the appropriate technique(s).
To learn more read our ACTION PLAN
IMPORTANT NOTE: There are a number of reasons why blood calcium values may be high. The American Association of Endocrine Surgeons is a reliable source of information for learning about these various reasons. As primary hyperparathyroid disease is the most common cause of high blood calcium, and this diagnosis was the root cause of our symptoms, this site will only addresses primary hyperparathyroidism from patients’ perspectives.
My husband had a parathyroid tumor removed Feb. 7, 2012. At that time ot was producing over 4,000 PTH units. It was estimated to be over 10 years that he had it. The removal did improve his life, but too much damage had been. His kidneys started failing and he developed ulcer and gastric cancer.
He passed away June 7th, 2016. I don’t know whay death certificate will give as cause of death, but I believe it was from complications of the parathyroid tumor.
We are so very sorry for your loss! Our thoughts are with you during this difficult time. Thank you for taking this moment to share his story to help us educate others, not only of the debilitating symptoms, but the long term effects of patients going undiagnosed for years and/or the “watch and wait” model of care that so many medical professionals still ascribe to. If we all work together we can create change.
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My husband had autopsy. The high calcium had affected nearly every organ in his body. The cause of death is a heart attack and sepsis but the true cause was the parathyroid tumor so many doctors missed or dismissed. When we were gathering doctor’s report for his surgery, one doctor told him to wait! Another doctor said we had to wait until his employee who handled paperwork cane which was 3 weeks wait. I protested and got thevpaperwork and my husband got a letter from doctor telling him he had 30 days to find a new doctor. An endocinologists had a big poster in hall about parathyroid tumors and he prescrubed him a huge dose of vitamin D daily which made it worse. One day my husband just said he wasn’t going to take any more of those d___ pills and quit taking them. PTH tests should be as routine as cholesterol tests.
We agree that it would be so very helpful if PTH would be tested routinely in relation to serum blood calcium. It is their relationship to one another that enables a proper diagnosis. Often patient’s find their high calcium values are ignored and/or advised to take Vitamin D as your husband was. In other cases, as calcium values are age dependent, values in the mid 10’s are reported as normal for a mature adult. We also hope that the standards for surgical removal keep pace with the number of newly diagnosed patients. It is a difficult surgery and requires expert surgeons for successful removal and to check all four.
This is all so confusing for me. I have, today (after major emotional breakdown in doctors office) managed to convince her to order blood tests for PTH and calcium. She is telling me I have major depression because of stress and all my joint, muscle and bone aches are probably fibromyalgia. My cholesterol is high as are triglycerides and LDL cholesterol. My insulin is up (never had this before) my dry, red itchy eyes have been explained as stress. I have so many symptoms I only told her a few. I do also have Hashimotos but Im sure it’s nothing to do with that. Urea, phosphates and albumin aren’t right either. Im so tired, feel about 150, have a bloated stomach, inflammation, dry hair and skin, moody, overemotional, and loads more. Feel like I’m going crazy at times.
Hope you find answers to your health issues.
Thank you. I contacted one of the top parathyroid surgeons in Australia and he told me exactly what to ask for. Dr had only put down for ionized calcium and PTH. I added vit D, albumin and PO4 as advised by the surgeon. The last blood tests I had were in Sept 17 so wanted to be sure that all tests were current.
With the tests for calcium and PTH ordered, all you do now is wait for the results. Whatever is causing your health problems, I hope you find the right diagnosis.
After having 10 kidney stone surgeries this year iI begged my urologist to order blood work. I told him all my symptoms: fatigue, weight gain, foggy brain, deep bone & muscle pain & aches, insomnia, sleep disturbances, etc. He told me he only sees Hyperparathyroidism twice a year at best and refused testing. I then went and got tested myself. Calcium 10.4, PTH 78, Vitamin D 15.5. now after 3 blood tests in still trying to convince my surgeon this is what it is. Here’s not convinced… Such a horrible thing to go through.
Do you know of any good parathyroid specialists in Houston, Texas?
We travelled to have our surgeries at the Norman Parathyroid Center in Tampa, Florida. As they realize not everyone can have surgery at their center they offer their website http://www.parathyroid.com as a resource to all. The American Association of Endocrine Surgeons has a “surgeon finder” feature to locate surgeons by region that you consider using https://www.endocrinesurgery.org/Membership/Find-a-Surgeon. We offer a list of questions on our website to help people get started in developing a list of their own .https://parathyroidpeeps.com/choosing-a-surgeon-considerations/questions-for-surgeons/
thank God for all this good information….so important and difficult….
We are so happy to hear you find the information helpful.