Hyper PARAThyroid Disease-Alert the media!

Undiagnosed for over 10 years. Finally diagnosed after admission to AMU with Type 1 diabetes at the age of 52. Broken bones, needless gynae operations and thankfully referral to fantastic Endocrinologist who recommended operation. Now 6 months post op and slowly getting my life back. I'm so thankful to Sally Bally and her Facebook group for their support. More awareness needed and education. When a woman goes to her GP and she's over 40 it's not always down to the menopause!!!

This is not a rare disease. It is more common than you might thing. It has seriously debilitating symptoms covering many areas of the body. The only cure is an operation to find and remove the rogue adenoma/s. Once accomplished the cure is almost instant.

I went undiagnosed by one PCP and two endocrinologists for over 5 years. Finally self-diagnosed and had surgery to cure the disease.

I have raised path, high normal calcium, and many of the symptoms. Still undiagnosed. Please sign for all those suffering now and those that will in the future if this is not recognized soon.

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A simple fix for a debilitating condition and long term nhs savings it's a no brainer

It is truly sad how many physicians, especially specialists in Endocrinology, aren't very knowledgeable about this totally treatable condition!

A dreadful insidious disease that drains the body and mind

A self-diagnosed sufferer 4 months post op! Awful disease and we so desperately need to raise the profile so no one else suffers for 10 years needlessly!

I was undiagnosed for 15 years. My doctors and endocrinologists are not interested in hearing or learning about hyperparathyroidism. They are blinkered and refuse to acknowledge primary hyperparathyroidism is the 3rd most common endocrine disease. If they were prepared to do a little research themselves, they would be amazed how many of their patients are suffering under their noses and can be cured with an appropriate referral. We have had to campaign for UK guidelines, thankfully they have been commissioned but will not be published until May 2019. We desperately need media attention to help our endocrinologists and doctors step up and take notice.

I have had an extensive page about this on Facebook for 12 YEARS

I suffered 10 yrs. doctors wanted to medicate me. Lucky for me I researched for 3 yrs. found a fantastic doctor and had one bad gland removed. The symptoms disappeared as soon as waking up from surgery. I am so glad I researched this disease and took steps on my own to make myself well again

I suffered from this in many ways for yrs. It's a pitiful disease and so curable! I had surgery last May and am getting better all the time now. Drs. especially need to be made more aware!!!

I am Now 11 months post op ...this disease needs to be recognised and dealt with not leave patients to wait and see .this attitude costs people loss of a healthy life and added costs to the NHS .there needs to be post op care and not just leaving patients to get on and prescribe their own post op recovery .

I was diagnosed with elevated blood calcium in 2015 having been initially admitted to hospital with a broken pelvis in 2014 and was referred to Endocrinology for further investigation. I continue to suffer with Osteoporosis, brain fog, short term memory, fatigue, gallstones and bone, joint and muscle pain from my head to my toes, constant thirst....the list goes on. My Endocrinologist has now decided that my high calcium and parathyroid hormone levels are due to low Vitamin D levels and not an adenoma as previously thought, however the surgeon I contacted with my blood results since 2015 is prepared to operate as he has diagnosed me with PHPT and is waiting for a referral from Endocrinology. It would seem I, like many other Hpt sufferers, are being fobbed off by inexperienced doctors. This must change for future sufferers, if not for our own health, and we must raise awareness of this disease to enable further research and create protocols for the NHS to follow via N.I.C.E. guidelines.

A few medics do have awareness, so why not all. What will it take to get through to the rest? We should not have to suffer this dreadful disease.

My blood test results came back with elevated calcium back in 2013. I'd gone to my GP's surgery as I'd been experiencing bone pain in my wrists & cramps in my feet & legs but despite these symptoms and blood test results nothing was done. I'd had more blood tests between 2013 & 2017 but the high calcium wasn't actually taken seriously, by one of the GPs in the practice, until early on this year 2017. Too many GPs don't seem to realise that elevated blood calcium needs to be investigated further. I have since been diagnosed with this disease & am now finally on an NHS waiting list for surgery with one of the few experienced endocrine surgeons available in the UK. Very few medical professionals know anything about this disease and very few lay people also. This needs to change in order for more people to be diagnosed correctly and referred for surgery which is the only cure.

I‘Ve had undiagnosed Hptd for 10 ys. I was operated almost one year ago and I’m going through my healing journey. Awareness is so important, as most doctors are not informed about this disease.

Too often people find they have this disease by accident when admitted to hospital for something else......it has to stop!!!!

At last ... I was diagnosed 2 years ago and had the op 2 months ago. It causes havoc in the body.