I asked our members this month April 2018; to talk about their broken bones and fractures and if their doctors/bone clinics had made the connection to PHPT. 

Leanne: My friend stood on my foot and fractured my big toe on my right foot. This is how I found out I had parathyroid issues as they thought it was gout, did lots of blood tests and looked back at calcium levels.

Jackie: About 3.5 years ago I broke 2 bones in my foot, I only slipped off one small step. This took forever to heal. I didn’t even know I had PHPT until recently but I know I have felt ill for at least 3 years.

Denise: Had my sestamibi scan whilst having a broken elbow in June 2016. Up until then, I had been backward and forwards to my GP with symptoms. I have osteopenia which was probably the reason put down at the time for the break, it wasnt until all my tests etc that osteopenia more likely due to hpt and not my hysterectomy 7 years ago which i was originally told. So i think ive had this longer than ive realised. And I am now 4 days post op. (sadly Denise had a lymph gland removed instead of a parathyroid adenoma).

Becky:  I had a stress fracture in the left foot. The doctor ignored it and would not even do an X-ray. I walked on it for over a year before I bought my own brace to heal it. How sad.

Theresa: Some 9 years prior to diagnosis of PTH disease I broke the 5th metatarsal bone in my right foot. I was merely strolling along when my foot literally ‘gave’ way. I stumbled but didn’t suffer any high impact fall. Staff at my local hospital said, despite significant swelling etc, that it couldn’t possibly be broken given the circumstances. I had to strongly insist on an X-ray where it was confirmed I had indeed broken the bone. It’s an understatement to say how incredulous the staff were, and said my particular break was one normally associated with sporting injuries. Apologies were profuse. Sadly nobody joined the dots. 

Lorraine: Lots of fractures, mostly low impact. I asked for DEXA after 3rd wrist fracture ( 4th fracture in total) in my late thirties which showed changes but wasn’t acted upon. RTC in 2003 which resulted in a fractured knee requiring surgery. In 2011 I had a knee replacement and the surgeon referred me to the Rotherham Bone Unit as he was concerned at the state of my bones. They diagnosed HPTD but thought it was secondary and were treating me when I had yet another wrist fracture requiring surgery at Sheffield where another surgeon raised concerns and referred me to the Bone Unit there. They also diagnosed HPTD and osteoporosis but had me on wait and see for a further five years ( seven in total) in which I had several low impact fractures, one resulting in further surgery. Given that two surgeons and eleven fractures appeared to show I had a problem, I’ve never been given a DEXA of any of my limbs. Eventually, I went out of the area to my knight with shining scalpel Mr Chadwick who operated eight months ago. On my yearly check-up at the Bone Unit following my surgery, they discharged me. 

Susan: I am currently experiencing a suspected fracture of thoracic vertebrae been in agony for 2 weeks got my x-ray on 13th April doctor suspects osteoporosis.

Kevin:  I fell over and had a fragility fracture which was a real blessing as I would never have known I had high PTH otherwise (with normal calcium). The fracture led to a DEXA scan - osteoporosis - which led to a PTH test. I've also had 2 broken toes. Without that PTH test, I would still have a diagnosis of CFS/ME and Fibromyalgia instead of hyperparathyroidism.

Linda:  I had fractured thoracic vertebrae, in 2011, while I was not even moving. Was tied to my osteoporosis, but no one looked at my high calcium levels, even though it was documented. Took till 2017 to get a PTH test, and only after much pushing on the endocrinologist.

 Jessica:  Broke a toe when I stubbed it a year and a half before being diagnosed. It wasn’t treated because of insurance and financial issues (in the US) and still hurts on and off though far less post-op. It’s on my left side, same as my adenomas and where all my bone pain was.

Teresa:  I had fractured 2 cuneiform’s in my foot while jogging. Went to a podiatrist, who said it was a very unusual injury for a runner. Took 3 months to heal. It was another 4 years until I was diagnosed. But looking back, my calcium was high even then and had been for about 6 years.

Tracy: With symptoms, consistent high Calcium levels, normal PTH a positive sestamibi scan awaiting DEXA my Endo quickly diagnosed PTD and referred me to a surgeon. However, he was not convinced and referred me for an MRI which was done 5 months later. Soon after the DEXA scan showed severe osteoporosis and I was referred to a different surgeon. Now 9 months after diagnosis started having severe bone pain ( but only for 1 hour each night!) The new surgeon operated two days later! The pain stopped that day. However, it returned 4mths later. Now having treatment for the osteoporosis and yearly Dexa scans to monitor progress but the Bone Clinic says osteoporosis is not painful there's something else going on. I have yet to find out what. Had a fractured wrist 2 months before surgery no connection made.

Julia: 2014 fractured my finger very nasty break.  I needed an operation, the fracture was pinned and screwed and wired. 2017 diagnosed with hyperparathyroidism. Bloods showed high calcium for years. Also needlessly underwent endometrial ablation in 2016.

BL: Fracture in toe 17 years before surgery .. compression fracture in the spine L1, but I do not know how many years before surgery because it showed on a CT of the stomach .. 3 rib fractures a few weeks after surgery and rib fracture 1 1/2 years after surgery. Osteoporosis in spine 2015: T score -2.9 half a year before surgery and 2018: - 3.1.

Colleen: Fractured left wrist and right thumb as a child and have broken toes over the years having stubbed them. Fell and broke my pubic rami (pelvic bone) in 3 places in November 2014, Dexa scan showed osteoporosis and I was referred to Endo from bone clinic due to high calcium and PTH. Endo diagnosed PHPT in August 2015 but I was going to visit my son in Australia so put off a referral to a surgeon until following year. Fell and broke right ribs around October 2015 and in December 2016 fell at Dubai airport on the way to connecting flight to Brisbane. Multiple fractures involving 5 ribs on left side. Currently, on Mr. Robert Hardy’s waiting list for surgery and last week, I fell again (over my daughter's dog 🐶 lol) and have fractured left ribs again. Terrified I’ll be put to the back of the list until these ribs heal.

Julie: Three years after my 'calcium correction' surgery I fell downstairs and fractured my leg. Told fracture clinic and a&e, neither took any notice really when I told them I had hyperparathyroidism undiagnosed for years.