I am going through the several years long process of getting a diagnosis of pulmonary sarcoidosis. I had a benign parathyroid gland removed in 2014, which was the source of my hypercalcemia back then. After the removal of the adenoma, the normal calcium levels lasted about 2 years, then the level slowly crept up and I was convinced I had another parathyroid gland out of whack. Finally, the rheumatologist saw that my 1,25 vit. D3 level was elevated and that is what caused the calcium level to elevate. Just passed a kidney stone - at my desk at work! Small stone no doubt.

Given the results of the CT which showed the nodules and lymph nodes being affected - it looks as though it's sarcoid. I have a pulmonologist appt. tomorrow and I imagine that he will be recommending a biopsy to confirm.

One of the problems we have getting a timely diagnosis is that doctors do not pay attention to the "slightly elevated" calcium levels. My lab shows reference range 8.5 to 10.5 mg/dL. My slightly elevated levels showed around 10.4, 10.5, 10.6. That's when they checked it after waiting 3 to 6 months. I was even told they don't get upset unless it's 11.3 or over. Fortunately, after me nagging for serial labs they found the level at 11.3. This is how the hyperparathyroid was discovered.

Now with sarcoidosis, I still had to push to get looked at. I don't know any way else to get taken seriously by these numbers-based doctors except to do your research, ask a billion questions of your doctor as to why, and keep pushing. Shouldn't be this way, but it is.

The waiting in both of these conditions can cause damage and certainly pain and suffering for the person dealing with them.

@A MyFibroTeam Member I checked my blood work for around the time I was having my kidney issues.
My ACE Serum level was 3 x what it should have been; my Creatinine level was double what it should have been. Calcium levels had dipped out of the normal range but then did return quite quickly. When I was referred to Nephrology my Symptoms were consistent with Stage 4 kidney disease.

I also believe that the Renal consultant I saw initially may have panicked and over-reacted! I was put on a hefty dose of steroids, 60mgs a day, and I am only just down to 5mg a day.

Maybe I would have been spared the excess weight, dangerously high blood pressure and osteoporosis. But who knows?

Mentioned Users

A MyFibro...

My blood tests showed dangerously high creatinine levels which increased each month so after 3 months I was referred to Nephrology who diagnosed kidney problems and ultimately identified as hypercalcemia.
Hope you get the results you hope for.🤞

@A MyFibroTeam Member I have a steroid inhaler to use when I feel the need. My respiratory consultant is fairly happy with the state of my lungs at the moment. He will not prescribe steroids, they were for my kidneys.

I so glad to hear that something good came from this devastating condition, FMS.
Wish your aunt the very best wishes from me please. I think we sarcoidosis sufferers are quite rare.🌷💖

Mentioned Users

A MyFibro...

@A MyFibroTeam Member (have to celebrate with you all, I just learned how to tag someone XD) and I am so happy they found it so early for you! She has it in her lungs and large lesions on her scalp and legs. Its changed her entire life as these things often do. Something beautiful happened because of all this, though. We were estranged for several years because of nothing other than 3500 miles and when my grandmother heard I was developing the same symptoms as her and my aunt, she reacquainted us.
Do you mind my asking what type of therapy you do for sarcoidosis?

Mentioned Users

A MyFibro...