"I almost got thrown out of the doctor's surgery last week for demanding a referral to someone who understood hyperparathyroidism. I wanted to get as well as I can be, and told them that I'm not sitting around waiting to die while they just watch my blood results fluctuate and try to treat symptoms and not the cause of my many now chronic illnesses."
I rang a parathyroid surgeon this morning to ask about becoming their patient.
I got a phone call from my local doctor a second before I was about to ring him to ask him to do the referral to the specialist. My doctor was panicking. He thought I was having a heart attack because my blood calciums were elevated. Silly idiot!
He cannot grasp the co-relationship behind all my failing health and medical conditions of the past six years. I've had low Vit D 35 nmol/L, despite my sunbathing and taking Vid D3 and my raised PTH (parathyroid hormone) at 10.8 and Calcium levels (raised for years—and they only tell me about that now) at 10.8H plus the worsening osteoporosis of the spine that increases my risk of falling, causes me pain and forces me to use walking aids.
I need to have something done about my parathyroid gland. The doctor, not understanding the parathyroid gland's function in health and disease, wants to send me off for all these invasive heart tests instead. He seems convinced that the calcium is caused by heart disease.
I said, that I only wanted the referral to Dr.. the specialist parathyroid surgeon. When asked if a local specialist would suit me, I said, "Yes, if they are experienced in operating on glands the size of a grain of rice. If not, this specialist that I'm requesting has a 98% success rate, and I'd like to go to see her."
I did agree with my doctor to having more calcium level and heart tests on Friday.
Then, (silly idiot!—may I vent and say that twice?) told me not to have any calcium. As if the excess is coming from my healthy diet—the excess parathyroid hormone is drawing it out of my bone. The doctor acts as if he hopes the whole situation will magically go away.
I'm one who can tick off all the secondary conditions that hyperparathyroidism causes, as amongst my symptoms, to the point that I'm sick and disabled.
This dope of a doctor, after six years of my failing health, is suddenly concerned and scared that I'm likely to have a heart attack. Almost makes me laugh at how panicked he acted. He also thinks that by stopping having three normal sized servings of calcium in my diet, that I'll be better between today, Tuesday, and next Friday.
He wanted me to go to the emergency at the hospital if I have any pain. I told him that I always have pain and had been describing the pain, increasing pain, to the doctors at that clinic for six years. So, he wanted me to go to emergency right then, Well, I refused.
I'd been ill and in the hospital with a health scare two weeks before, and had an ECG done then which had shown a very slow sinus rhythm, but no other abnormality. It was there, while I was in the hospital, that they found out that my scarred lungs—pulmonary fibrosis (calcification of the lungs?) had worsened and that there was additional scarring since the last tests. They did the blood tests that proved that I have hyperparathyroidism. The only problem now is that most of the doctors just think those tests can't be right or that they mean something else aside from the obvious condition of hyperparathyroidism that they point to. Those doctors seem to think the condition will go away if I remove what is a normal level of calcium from my diet. Shaking my head in exasperation at their ignorance.
Even they (the hospital doctors) just wanted to do nothing and just assume that I'll die in the next few years or so of lung, heart failure or stroke, given how high my cholesterol level and blood pressures have climbed with the calcium being so high. The valves in my legs have stopped working properly and don't close, my heart valves are affected, obviously calcified, oh, and I've multiple organ issues, pancreatitis, kidney stones and abnormal liver function Haha—"So let's just watch and see what your calcium levels are in a fortnight's time," the doctor said.
"No, refer me to someone who knows more about hyperparathyroidism than I do," I said. I also meant, knows more than you do.
Now, I do not expect my doctors to know everything about everything, but I do expect that they might at least read a page of updated information about a condition that they obviously don't understand before talking about it to a patient.
Thank goodness I know what's wrong and now know who to go and see to get action towards my regaining as much health as I can reclaim.
So, that's my story and my turning the corner towards getting well.
Here is some expert information about hyperparathyroidism.
and Dr Nathan speaking about Hypoparathyroidism.