High Calcium but not Hyperparathyroidism

Greetings, I could really use some help here. I know there are a million posts on here about this topic, however I have a unique situation and question. Let me start off by saying that the reason I am even here is because of symptoms. I feel like crap all the time. That is what caused me to go see a doctor finally, and the fact that I had some insurance. When I got my blood work back I had a calcium level of 10.8. This prompted the doctor to request a Intact PTH level and a calcium test at the same time. These results were normal (9.9 cal and 45 PTH) So I was told I don't have Hyperparathyroidism. This was shocking to me because I have 11 kidney stones currently, (calcium Oxalate no less) and have passed prob 10-15 stones since I was 17 years old (Now I am 28).

I have ever single symptom listed on http://parathyroid.com including a racing pulse and was sent to see a Heart doctor because of abnormal EKG and arrhythmias. They did all kinds of test (Nuculear stress test, 24 hr monitor etc...) but didnt seem to make much of it. I was put on meds for high BP and have had horrible stomach issues for years. anyway ever single symptom.

After dealing with depression and sadness over not finding a resolution to all the symptoms I have and taking a break from doctors for a while I decided to start looking around more. Found a new doctor and kinda started over. Did the whole blood test thing again and guess what? Calcium level was high again. This doctor tested for Ionized calcium instead and it was 5.35 showing as slightly high. I still have all the same symptoms and have kidney's hurt like hell because of all the stones. Lower back and flank pain like crazy.

So then to my question, In order to diagnose Hyperparathyroidism does the PTH level and Calcium level have to high at the same time? Everything I read seems to suggest that it does. I understand fully what parathyroids do and all that. My Vitamin D 25-Hydroxy total was 34.3 which is within normal levels. So if not Hyperparathyroidism then what? I have been tested for thyroid both high and low, Celiac Disease all of which were fine. CMP and CBC tests are all ok except for high ALT (Liver Enzyme. Mine was 110, normal is 2-60) but I have a fatty liver so they say nothing to worry about.

Basically the doctors can find no other cause for all my symptoms (Tired, feel like crap, kidney stones, stomach etc...) and the only thing I can see by my blood work is that the calcium levels are causing it. But what is causing the calcium levels if not Hyperparathyroidism?  Any information that someone could provide would be really helpful. I am tired of living this way and need some answers.

Thanks,
Josh
Phoenix, AZ

[Red_Star]

About 20% with parathyroid disease have high calcium and normal PTH levels.  One study even showed primary hyperparathyroidism with undetectable intact PTH and high calcium.  Just to add, a wide variety of diseases are associated with vitamin D levels less than about 40 ng/ml.

Causes of high calcium (hypercalcemia):

Most common (malignancy and primary hyperparathyroidism account for
90% of hypercalcemic patients):

Primary hyperparathyroidism

Malignant disease:
- PTH-related protein (carcinoma of lung, esophagus, head and neck,
renal cell, breast, ovary, and bladder)
- Ectopic production of 1,25-dihydroxyvitamin D (lymphoma)
- Lytic bone metastases (multiple myeloma, hematologic
malignancies and breast carcinoma)
- Other factor(s) produced locally or ectopically

Uncommon:

Endocrine disorders:
- Thyrotoxicosis

Granulomatous diseases:
- Sarcoidosis
- HIV

Drug-induced:
- Vitamin D
- Thiazide diuretics
- Lithium
- Estrogens and antiestrogens
- Androgens (breast cancer therapy)
- Aminophylline
- Vitamin A
- Aluminum intoxication (in chronic renal failure)

Miscellaneous:
- Immobilization
- Renal failure (acute and chronic)
- Total parenteral nutrition

Rare:

Endocrine disorders:
- Pheochromocytoma
- Vasoactive intestinal polypeptide-producing tumor
- Familial hypocalciuric hypercalcemia

Granulomatous diseases:
- Tuberculosis
- Histoplasmosis
- Coccidioidomycosis
- Leprosy

Miscellaneous:
- Milk-alkali syndrome
- Hypophosphatasia
- William’s syndrome
- Rhabdomyolysis (presentation is usually preceded by a hypocalcemic
state)

[gltch]

Thank you for all of that information. It seems to me that all of the other causes very unlikely. So just to make sure, you are saying that a lot of people have Hyperparathyroidism without a out of normal range of PTH? And if that is the case would next step then be to consult with a Endo? They would then check for a tumor with a ultrasound / CT / Sestembi or whatever the heck its called?

Thanks,
Josh

[Super_sally888]

Yes.

High calcium is nearly always caused by hyperparathyroid (other cause is advanced cancer which you obviously do not have as you would be terribly sick from that), which can be present even without elevated pTH.

I would say next step would be an endocrinologist.

High calcium is never normal!

[tracievh]

i had normal calcium levels and a high PTH and had a hard time convincing my DR that something was wrong. i eventually found a great endo who did a 24 hour urine catch and that revealed an crazy high output of calcium into my urine. i had a scan done and that came back normal. i went to two surgeons. the first one immediately dismissed me as not having a parathyroid issue because both the calcium and PTH were not high at the same time.  the second surgeon did an ultra sound and there it was. the largest adnoma he had personally seen.

so my advice is don't take no for an answer. go to another DR. insist on an ultra sound.

[gltch]

Well not sure what at all to make of this now. I had another blood test done the other day of Ionized calcium and PTH at the same time. The Calcium was 5.38 (Slightly High!) Normal is (4.52-5.28) and the Intact PTH is 33 (Normal). I finally talked my doctor into getting me a ultrasound of my Parathyroid's which was done today. I got the results back and it says "As best visualized no specific parathyroid abnormality is detected" I do have a "simple cyst" measuring 3.1x1.5x2.0 mm on the right lobe midpole.

I have an appointment tomorrow with an Endo about the fact that my calcium levels are high but was really hoping that I would have got my answer. So now the ultrasound shows nothing and I am afraid that the endo is going to shove me off.

Thanks guys for all you information and stuff.

[gltch]

Hoping to get a bump here. Went to see my endo and she sent me out for several other blood tests that I haven't got the results back on. I did get the results of my 24 urine test and my calcium level was 444 (normal is 50-300). My endo did say that she DIDN'T think it was hyperparathryroidism. She said that I would be really hard to diagnose if she could at all.

So frustrated and wish that I could get a fricken answer as to why my calcium is so high and find a way to fix it. My quality of life is not very good. Anybody have any other answers? I would be really surprised if I had cancer because while I feel like hell I don't feel like I am dying.

They also tested my Phosphorus 24 hr and it was high also at 1.5 (normal is 0.4-1.3)

Thanks!

[greeneyedraven]

Hi.My calcium bounces around. I go to the DR when something is obviously not right and high calcium shows up...10.4-10.5.  Then I go home and take nurses advice and drink tons of water.   And when I am very ill.....don't eat much and pretty close to bedridden - I drink water to feel better.  Lots of water.  And I don't eat much because I am THAT miserable.  It is at these times that my calcium levels are 8.9-9.1-9.6.  But PTH is still 69.10-77.90.

Just curious is you ever had HIGH calcitriol and High PTH?  

Recent blood work showed 85 Calcitriol, 75 PTH and 9.1 Calcium.  It's been 4 years of this and my legs are so weak.  I stopped going to the gym about 2 years ago due to the pain and exhaustion.  Been embarrassed many times by walking out of stores rubbing my legs like a madman from the pain.  Just really tired of running to the bathroom during the day and night.  My life evolves around knowing where a bathroom is and restricting fluids when out and about.  It's just crazy.  

[prestaspaceace]

I have been fighting simular symtoms (symptoms) all my life. I had stumbled on to some meds that make the problems tollerable. I have been to doctors on many ocasions when problems get to there worst, and allmost allways end up getting sent for a psych ecal. I could never even get a Dr. to look for anything, just handed another script for more ani depressants.
  I just started to go to a clinic in the small town i am living in. They checked my blood for potasium to see if that was causing my leags to hurt so bad. that was fine, but they found high calcium. I finally had something to work with, but i am finding every thing the Dr. have ever done has been wrong. they are still doing things wrong. I have to fight to get any info on test from them. I really recomend going to this sight. It is the best thing i have found. I am going to see Dr. today and recomend they go for a psych eval, then maybe go back to school! I am getting a little sick of Dr.s and there god complex. I hope this helps check out this sight,   http://www.****.com/diagnosis.htm    this is when i found out that all the symptoms i had did make sence. I was not crazy.