Hyperparathyroidism (?), lab concerns, trying to decide about surgery

[Mike-87]

I have been diagnosed with primary hyperparathyroidism based on lab work-ups from last year and have been monitoring my condition.  Here is a summary of my labs.  Concerns with a couple questions follow.

8/01 Ca=10.0 mg/dL
1/05 Ca=11.1
6/05 Ca=11.2
8/05 Ca=10.7, PTH=94 pg/mL
10/05 Ca=10.4, PTH=58, 24-Hr Urine Ca=598.0 mg/24-Hr
11/05 Ca=10.8
12/05 Ca=10.3 & another at 10.4
1/06 Ca=10.8, PTH=48, 24-Hr Urine Ca=675.7, 24-Hr Urine Creatinine=2.1 g/24-Hr

Concerns/Questions:
1

[Cherri JS]

Hello,

Since I am new to the forum I may be posting in the wrong place.  : )

In 2002 I was diagnosed with pituitary Cushing's and subsequent surgery showed indeed I had an ACTH producing pituitary tumor.  I have been told I no longer have Cushing's.  

For 7 months post op I felt great.  Then I began having trouble with fatigue, increased blood pressure (140/100), tachycardia, low grade fevers, aches and pains, extreme foot pain, restless legs, headaches, nausea, constant throat clearing, a feeling of fullness in my neck, trouble swallowing, choke easily, itchy skin, dry brittle nails, metallic taste in mouth, severe heartburn, frequent large ovarian cysts, abdominal pain, and the 40 pounds I lost post op all came back and then I lost 17 pounds in a month, and I had a couple of ulcers.  

About 6 months ago I was hospitalized with extreme flank pain and it was discovered that I had a huge kidney stone.  I had lithotripsy surgery the next morning and it took over a week to pass all the stone fragments.  The pathology showed that the stone was 100% uric acid.  Urine tests showed elevated uric acid and calcium and the urologist told me I could easily get either uric acid or calcium stones with those levels.  I was put on potassium citrate to help keep me from producing uric acid stones.  However, three months later I was found to have several small stones and calcification in the left kidney.  I was then sent to an endocrinologist.  

My endocrinologist told me he suspected adrenal insufficiency, hyperparathyroidism and M.E.N. based on my family history.  He ran a PTH test, vitamin D, urine calcium, phosphorous, magnesium, c-reactive protein, DHEAs, aldosterone, c-peptide, blood calcium, chloride, estradiol, and creatinine blood.  The results:

PTH:  61 (normal range 12 - 65)
Vitamin D:  14.9 (normal 32 - 100)
urine calcium: 280.3 (normal 8.5 - 277)
phosphorous: 3.8 (normal 2.5 - 5.5)
magnesium blood: 1.8 (normal 1.8 - 2.4)
c-reactive protein: 5.9 (normal 0 - 4.9)
DHEAs: 43 (normal 45 - 270)
aldosterone: 5.4 (normal 7 - 30)
c-peptide: 12.0 (normal 0.4 - 2.1)
calcium blood:  5.4 (normal 4.5 - 5.6)
chloride: 108 (normal 95 - 105)
estradiol: 6.5 (normal 7 - 30)
creatinine blood:  0.6 (normal 0.7 - 1.5)

From the results I was told I was adrenal insufficient and that I needed vitamin D supplementation.  I was put on 1,000 IUs of Vitamin D3.  Several months later I was re-tested and my blood calcium level had dropped to the low end of the normal range.  I was then put on calcium supplementation and my vitamin D was retested.  My vitamin D level was still below normal at 21 despite taking 1,000 IUs of D3.  I was then increased to 1,500 IUs of D3 and my level dropped to 16.5.  However, now my both my blood and urine calcium levels are coming out normal and my PTH has dropped to a 24.  Since the supplementation has dropped my levels to normal range it has been decided by my doctor that I no longer have any problems and that I can't be dealing with hyperparathyroidism.  The problem is, my labs may now be in the normal range but my symptoms have not disappeared.

I have heard that vitamin D3 supplementation can mask hyperparathyroid test results.  I still feel there is a good chance I am hyperparathyroid but my doctor refuses to test further and declares I am fine (despite being adrenal insufficient).  Does this warrant further investigation and what do I need to do to prove I need a parathyroid scan?

Thanks for your help!

[Mike-87]

Dr. Kevin,

Thank you for your response and clarification with regards to a PTH level that is in the normal range but

[Kevin Pho, MD]

To answer your questions:
1) About 80 percent of those with hyperparathyroidism have a high PTH.  The other 20 percent have PTH's in the normal range that are "inappropriately" high.  Thus, a normal PTH level does not rule out hyperparathyroidism.

2) A serum creatinine can be obtained, and a GFR (glomerular filtration rate) calculated.  These values can evaluate the kidney function.

3) The diagnosis of hyperparathyroidism is made via biochemical testing.  You can obtaing vitamin D metabolites to further confirm the diagnosis.  

There are some surgeons that attempt imaging studies prior to surgery.  However, this is not very reliable - with only 40 to 80 percent obtaining positive results.  MRI, ultrasound or a nuclear scan can all be considered.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b