When I walked into the endocrinologist's office it was very clear I knew more about the disease than he did. Talk about scary! The "specialist" who is supposed to be helping you can't even answer your questions.

'One endo, who was registrar level, said he didn't know much about hyperparathyroidism so checked in his book. Fair enough I thought, but then another member of this group saw him several weeks later and he told her he knew for certain that her vitamin D would be low and she should take a high dose. This was without testing it and she already had very high calcium and normal levels of D. Luckily his superior rang her several days later to tell her not to take them in case her calcium rose further'.
 

' Yes, that's right. He also had the cheek to suggest that the blood in my urine was probably not caused by those teeny tiny painful kidney stones, but probably my menstrual cycle and I was mistaken'.  Wouldn’t mind but if he’d read my notes he would know that I haven’t had a period since I was around 19 years old'.

Generally, my main endo was very helpful but I have a letter from him which states categorically that my palpitations could not possibly be caused by hyperparathyroidism because my calcium was not high enough and would definitely not go away after surgery (they did).

'Your symptoms could be caused by any number of things but not hyperparathyroidism. As you have had a PTH over range and one under, there is no need for further investigation or blood tests, you are discharged'
 

The worst comment I had was from the endo consultant who is the clinical Dean of Cambridge medical school, so responsible for teaching the next generation of medics: " The symptoms only come from high calcium. You don't have very high calcium, so you can't be having any symptoms."
 

My GP, when confronted with my high Ca and low vitamin D, in five years of letters (2011-2016) said "it can't be HPT that's incredibly rare. There hasn't ever been a case at this practice so it's much more likely to be diabetes or thyroid but I suppose I could check your PTH". Two days later she said, "you were right, you have a tumour and I've missed it for at least 10 years. Are you going to sue me?"
 

 I was explaining my hot flushes followed by feeling very cold. He said, "well that would be menopause ". To which I replied "but I'm 73 "
 

 'We took the wrong one out, come back in a year's time and we will review it. ' Yeah okay, then 16 months later and still nothing from them.
 

My first endo said it was my thyroid without seeing any labs - then after she saw my high Ca in the labs she said I was dehydrated.  The second endo said I have PTH but that at age 59 I was too old for surgery. 
 

I was hospitalized with major depression for the second time in three years, the Mental health Drs didn't think my high levels of calcium and parathyroid hormone were enough to cause my depression They treated me erroneously with psych meds...
 

Endocrine surgeon: Calcium 10.7, PTH 54.. he declared I definitely did NOT have HPT!! He said he would send my urologist an e-mail informing him that HPT was not the cause of my 30+ kidney stones in the last ten years so he could look for another reason why!!!
 

The endocrine surgeon didn't believe I had an adenoma. Luckily for me, I also had Graves Disease so he agreed to remove my thyroid and "surprisingly" found the adenoma I told him was there behind it.
 

Endo felt because my levels always just elevated, there was nothing at all wrong, admitted yes low Vitamin D...and dismissed all my symptoms as me making things up.

After telling my endo for several years that I felt all my symptoms were coming back, I was in a lot of pain and that I wasn't cured, he said 'Your levels show you do not have primary hyperparathyroidism, but if you do, it's mild'. I had a second adenoma removed after getting a second opinion. He refused to see me himself but passed on the message that he was delighted I was cured, but he wouldn't have done anything differently if it happened again...
 

I was just recently diagnosed with hyperparathyroidism, Apparently "mild".  My symptoms don't feel mild but the endocrinologist said unless I developed kidney stones or osteoporosis that I don't need surgery, I have to just sit and wait. Meanwhile, I feel constantly sick, in pain, weird heartbeat, and have a fuzzy head.  I did try and say to him that I had heard that it doesn't matter if it is mild, the symptoms can still be severe, but he just talked me down and smiled at me.