Kidney Stones- Calcium lowered, not parathyroid

I am seriously confused now. Just received my test results, have not had a chance to speak with doc yet. My calcium level was 10.9 last month and has been high in tests dating back to 2004. Doc thought it might be a bad parathyroid so I did the blood work. My calcium level has lowered into a normal range and my parathyroid test came back normal.

I have had problems with my kidneys for 25 years. Have two 5 mm stones lodged in the high left kidney that can only be removed by surgery which they do not suggest as it would be too invasive. Stones are not in an area where they will flush out, doc thinks stones could be 20 years old.

My last bought with stones was in Feb. Asking for advise where to go from here from those who have been down this road?

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I have had kidney stones for about 18 years. I have had diagnosed Sarcoid for about 8 years. I believe I had the beginnings of the Sarcoid back when all the stones started. Back then I had no symptoms so it was not noticed. Right now I have a 4mm stone in my left kidney. It has been there 2 years. They told me they did not want to do surgery on it either. There was some mention of a blast in a tub of water to break it up but no gaurentee it would work. I have some smaller stones also and passed one in March. Very painful. I am on 6mg of steroid daily. Not sure what the fix is. I stay out of the sun 95% of the time and live in Mi so I get none in the winter. I only put milk on my cereal to wet it. I do not drink the milk and dump it out. I do not take supliments. I get a little in my cereal but that is it. My Vit D is always low and all other tests are stable.
Maybe just watch the stones..... I guess. If mine moves into an area they can get to they will do surgery. I had one removed in 09 like that. Surgery was no fun. It never is and it flared my Sarcoid just like my Gallbladder surgery did this year. I do have concerns about them hurting my kidneys in the long run but what can you do?

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I'm on my 10th stone. Right now it is a 4mm in upper pole of right kidney. ER visit on 4/12 and they said I had inflammation and recently passed a stone and had a new one. (I knew I had passed it, but then was confused about the new pain) they wanted to blast it. Went to urologist for follow up who sent me for another x-ray. Then no word for days until I called him. He said stone didn't show up and we have to wait for another flare up. Ok? Frustrating! Flare up and back to ER, ct scan confirmed stone and then doc said, you should have an MRI on your back, the stone shouldn't be causing you pain, talking out of both sides of his mouth he contined with, we see the stone, you have symptoms of kidney stone pain, but we think pain is only caused when the stone blocks the ureter. So stone is still there, pain everyday, not always excruciating, thank goodness, but we decided to go to a nephrologist and get another opinion regarding leaving the stone or removing it for health of the kidney. 38yr old white female w/sarc in lungs, lymp, possible nasal, and parotid glands and joints. 1 more thing, doc said the stone could be refluxing, moving down and getting sucked back up, he said it's very rare! Well, then I've got it! I guess my point is I would se more than one doc! Sorry for rambling! Good luck and i would like to hear what you decide to do! Lisa

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Your vit D is low. Your vit D25 is low, but your D1,25 is probably high. Pris can explain why high D1,25 and high calcium tend to often go together. I think the body pulls calcium out or your bones into your blood. Are you on prednisone? Also, be sure to drink alot of water. I had my first kidney stone 2 years ago when I let myself get very dehydrated. Kidney stone pain freakin hurts. It was very similar to my everyday pain, but about 20X worse. Morphine did not touch it. Man, I dont want to think about it. There is one drug that worked great. Cant remember what is was called. Good luck.

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I have had at least 15 kidney stones. Some passed, some had to be removed. But I am stone free thanks to Boniva! Even thou I am a male, sarcoidosis can leach calcium from your bones and it is hard for your kidneys to process it. Hence the stones. My doctor at the Cleveland Clinic prescribed the Boniva over two years ago after I passed my last stone. I have not formed a stone since. It maybe worth asking your doctor about this treatment.

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Have any of you experienced this or does this make sense? I am trying to put two and two together here. I mentioned that my calcium had been 10.9 and that it lowered to 9.7 which I am assuming is why I feel so much better. I'll have boughts where I am extremely tired, odd irritability, memory issues which affect my speech, headaches. This can go on for months and was happening with this last bad bought with my kidneys. Now that my tests show calcium is in the normal range I have energy again, my speech and memory are back to normal, I don't feel the irritability and the headaches are gone.

The only thing I did different was I started taking 250 mg of magnesium when I found out about the stones, not realizing at the time that they were lodged and could not be dissolved, and had read that magnesium can dissolve and prevent stones. Also been in the sun more since the weather has been nice.

My question now is could the magnesium and/or sunshine (vit D- I take no vit D supplements) lowered the high calcium? And if I could stabilize my calcium levels, will this prevent the stones from forming?

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D incraeses your calcium dramatically;;

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Hi AVR1962,
Even though your serum calcium has come into normal range you should have a 24hr calcium urine collection also performed. Hyper-calciurea is what drives the formation of the stones. So even with normal blood calcium your kidneys may still be dumping large amounts of calcium to your urine. It sounds like your kidneys are starting to get the upper hand in stabilizing your blood calcium.
Many Sarc patients have hyper-calciurea while only a small percentage actually develop hyper-calcemia (high serum calcium).

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PrinctonB, or any others who can answer this, let me get this straight. So it is hypercalciurea that allows the stones to form but that has nothing to do with hypercalcemia and hypercalmia is only a reflection of a bad parathyroid? I read thru the material at parathyroid.com and I understand that calcium levels in the blood can waver back and forth which means the parathyroid is not functioning properly, is this correct? I did have a blood test done on the parathyroid and the results came back that my hormone levels were in the good range. This tests was done when my calcium level went back into a normal range. Would the parathyroid test result been positive whether my calcium level was high or not? Something is not making sense to me. I get that the parathyroid could still be faulty because my calcium levels are fluctuating but what about the normal parathyroid test?

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Over-simplified: Vitamin D25 is what is commonly measured, but it is the D1,25 that causes the problems. D25 converts to D1,25. At the same time, your granulomas/macrophages are making more D1,25. Your body tries to compensate by lowering (not making) the D25. The kidneys try to dump the extra D1,25. That is why it shows in the urine first. When it can't dump enough, it shows up high in the blood. When D1,25 is very high, it leaches calcium out of your bones into your blood stream. This destroys bones and can cause kidney stones. The calcium lays down in organs, such as blood vessels, heart, kidneys, etc...causing organ damage. In extreme cases it can be life-threatening.

That is good advice to have your urine tested. Try avoiding all things with Vitamin D and protecting yourself from the sun for a while and see if you Calcium levels fall. Since I have done gotten D out of my diet and taken sun precautions (along with the treatment-I-am-on-that-I-can-not-mention), my calcium has gone from a range of very high normal to higher than normal, to dead-normal now.

If you are looking for advice on a non-sarcoidosis site, you are getting advice that does not take into account your granulomas disease. People with granulomas diseases (lymphomas, sarcoidosis..) should not take Vitamin D supplements or eat foods with Vitamin D fortification (milk, some cereals, most fish, egg...) and should avoid prolonged exposure the sun (such as sun-bathing, spending the day on a boat or on the beach.)

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Forget about the parathyroid gland. In sarcoidosis the cause of hypercalcemia is not a malfunctioning parathyroid.

to compensate the hypercalcemia caused by sarcoidosis, the parathyroid will slow down the parathyroid hormone production, that's all, for for the rest it's not relevent. You should get a vit d 25 test, a vit d 1.25 test, a blood calcium test, a uriniary calcium test, and a parathyroid hormone test (a low result will confirm the hypercalcemia caused by sarcoidosis).

David

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Thanks Deedee and David.......all of this gets so confusing but I think I am getting it. Helps to have some direction so I can ask the right questions. I have another doc appt in 2 weeks and we'll go from there. Good thing, is right now I feel good so I am really thankful!

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Hi AVR1962,

I am so sorry you have been having problems with painful kidney stones. Men are more likely to suffer from stones than women overall. Sarcoidosis sufferers who are men are also more likely to suffer from kidney stones than women with the same disease.
Men have less control over breaking down excess 1,25D than women because of the hormone testosterone which down regulates this enzyme. Sarcoidosis sufferers make more of the 1,25D which is the hormone calcitriol which is important for calcium regulation than the general population. This is because the general population only has one source of calcitriol manufacture in the kidney. The manufacture of calcitriol is controlled by the parathyroid gland and kidney enzymes. As I say, testosterone manufacture means men cannot make quite enough of this kidney enzyme as women. Therefore they are more likely to suffer kidney stones. However, as I say the sarcoid population is even more at risk. This is because sarcoid patients have two sources of calcitriol production. The first is normal and natural. That of the kidney which all people have. It is regulated by the hormones PTH and also calcitonin as well as the kidney enzymes. However, we have another source outside of this which is unregulated, especially by the enzymes, though PTH and Calcitonin can play a small role which can cause problems for sarcoid sufferers. The source of this suffering is the sarcoid granuloma themselves which can manufacture an enzyme which converts normal vitamin D to calcitriol. Thus making an added source of calcitriol. The more granuloma you have in the body, the more calcitriol you can make.

Because these processes are constantly occuring in one's body, having a test here and there is only like taking a snapshop of the workings of these systems at any one time in the process. While it gives some information, it is often unreliable for numerous reasons.

I myself have had calcium problem over the last few months. I also have a normal PTH level, albeit on the low side of normal. My Vit D level has ranged between US units 6 and 10. My 1,25D is crazily also abnormally low but approaching the NR. However, my calcium levels have ranged between .3 below the upper limit and the upper limit. My phosphate level has been at the upper limit of normal 1.5 and above 1.53 and also 1.77. If the parathyroid was the source of this problem, my phosphate level would be abnormally low. The raised phosphate proves that my sarcoid is the cause of this problem. As to my 1,25D or calcitriol level, I don't believe and believe the specimen must have been mishandled.

We have other means of maintaining calcium within normal range. PTH drops stopping or slowing production of vitamin D. This is often mistaken as a deficiency by doctors. PTH drops for two reasons. Too much calcitriol causing negative feedback, and too much calcium also causing negative feedback. Both slow D production in order to prevent calcium becoming toxic. Another means of lowering calcium which is a positive ion is to increase the level of its corresponding negative ion phosphate. The phosphate bonds with the calcium causing calcium phosphate crystals to be deposited on bones, in blood vessels and in organ tissue. This is a bad thing. It has negative consequences now and particularly in the future. Both calcium and phosphate can cause heart rhythm problems. Another means of offsetting high calcium levels is excretion of excess calcium in urine. This causes calcium buildup in kidney tubules and risks causing kidney stones. Over time, this can damage kidneys and risks causing escalation of all these problems as the kidneys are less and less able to deal with excretion of these products.

I took a supplement with 80 IU and drank one liter of milk with 50 IU of D and 500 mg of calcium. I wished I hadn't, it stuffed my tests up good and proper and is ruining not only my kidneys, but I have got calcium deposition right throughout my thoracic spine and in both hips without any of the normal joint space decreasing of normal osteoarthritis, thus, the calcification is purely down to the bodily system of getting rid of calcium excesses by dumping it on the end of bones.

There are things you can do to decrease kidney stones.
Drugs
1. prednisone (fast)
2. plaquenil
3. ketoconazole
4. bisphosphonates like actonel or fosamax

Non Drug

watch vitamin D intake
avoid sun
cover most of body with impenetrable clothing in sun. you can test clothing with a light meter or check the UV on the net. If UV is under 3, your cannot make D in your skin.

Pris

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Other tests you can do are:

24hr urine calcium, protein and albumin. People with sarcoidosis and kidney stones often have high urine calcium levels. Blood calcium remains normal because excess is being excreted in urine. This over time can have health consquences. Check on urine protein and albumin will also help determine if kidneys are still functioning normally.

Blood phosphorus or phosphate levels. If this is raised, your blood calcium has recently been raised also. This test helps to distinguish the cause of raised calcium. If phosphate is high, sarcoidosis is the cause. If phosphate is low, then it is more likely the parathyroid gland.

EKG: If you have calcium problems you will probably also have phosphate ones. Phosphate causes a QT prolongation on EKG. It has happened to me. Surprisingly my doctors didn't know what caused it. I did a quick search for QT prolongation on EKG and found raised phosphate as a cause. I coincidently had a slightly raised phosphate. On retest of both, the QT was gone and so was the phosphate. I didn't know it then, but subsequently discovered that raised phosphate was caused by raised calcium in sarcoid or kidney dysfunction. The more calcium problems you have, the more likely you are to develop kidney dysfunction. I have had a nice time this summer trying to keep all my electrolytes in balance. I think everyone of them has been out one time or another. Electrolytes act in pairs because they are a balance between negative and positive ions.

I have learnt to recognise symptoms of imbalance.
Funny headache and confusion = potassium is raised.
constipation, thirst and dryness, urinary frequency = calcium is up hotly followed by phosphate.

The more often you have raised levels of calcium in the blood, even if only temporary, or if you develop hypercalcemia once or twice in frank episodes leading to hospitalisation also increases the risk of developing problems with your parathyroid gland. This occurs in two ways. Firstly raised 1,25D levels can cause hyperplasia of parathyroid tissue leading to a potential tumour and the development on hyperparathyroidism. Secondly, as the PTH continues to drop lower and lower due to raised calcium, tissues in the body begin to lose responsiveness to PTH.

This is why you need a strategy to deal with these problems soon. Many doctors don't take kidney stones seriously. If you have repeated issues with them, you need an endocrinologist familiar with sarcoidosis on your case.

Pris

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Thanks for the symptoms of system imbalance and what they mean. I think I finally figured out what I thought might have been light deprivation is hypercalcemia symptoms- being so tired, and my memory loss- this last bought for me was really bad, felt like I had alzhemier's overnight. Thirst, to the point of feeling like I have salt in my mouth is another. Do you have any dizziness? Or have trouble with tatse- food doesn't taste like it should?

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Hi AVR1962,

Yes, I have had a couple of episodes of severe bitter metallic taste. It was like nothing I have ever experienced in my life before. It was mid December (summer) and I had to take my mum to the hospital for a test. I felt funny after I arrived home. Then I began to vomit and I had the horrible bitter metallic taste in my mouth that nothing could get rid of. I had to ring my aunt to come and pick up mum from the hospital, cause I couldn't go get her. A couple of nights later, I woke with this horrible taste again. Again nothing could get rid of it. I was so dry I was choking and actually dialled for an ambulance. Then I felt better and have not had another episode. However, I now believe I had hypercalcemia. If I ever had the same symptoms, I would go to the ER.

Pris

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Oh, I do know about the metallic taste....it is ever so slight for me. The dizzy spells can make me sick enough I want to throw up, like coming off a merry-go-round and it doesn't stop when I sit. Thanks! Definately feel I have been dealing with the hypercalcemia and the effects for years now. When the calcium levels are high then all these symptoms start happening and then when it lowers it goes away. Assuming this is a malfuncting parathyroid (tumor), I do hope the docs will listen to me as this stuff has to stop. For years now I have not been able to keep myself feeling well enough to keep up anykind of exercise routine. With the memory issues, I feel like I have aged about 10-20 years beyond what I should be and all the symptoms seem to be getting worse and more pronounced with time.

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Hi AVR3,

If the doc thinks you have a malfunctioning parathyroid your parathyroid hormone level will be high or at least high normal. Other tests can help confirm a parathyroid problem. These are: 1,25D or calcitriol level - it is high with a parathyroid problem.
25D or vitamin D3 level - it is low with a parathyroid problem
serum phosphate level - it is low with a parathyroid problem
PTHrp level - it should be within normal limits with a parathyroid problem
sestamibi scan - this is a nuclear medical test to pick up a parathyroid ad.

The only remedy is removal of the adenoma which means surgery

However, you don't need to have a parathyroid adenoma to have symptoms of hypercalcemia or kidney stones. Sarcoidosis can do this all on its own. Your doctor is obviously not familiar with the fact that sarcoidosis could be causing your kidney stones and calcium disorder. The tests for delineating whether sarcoid is causing the problem are similar to those for parathyroid problems but the results, while the same for some tests, will be different for others and no sestamibi scan is needed.
Tests needed are:
24 hr urine calcium test: it will be high if sarcoid is causing the problem
1,25D or calcitriol test: will be high if sarcoid is causing the problem
25D or Vitamin D 3 test: will be low or normal if it is sarcoid
serum phosphate test: will be high if sarcoid is the cause
serum parathyroid horm: it will be normal or low if sarcoid is the cause
serum PTHrp test: this will be within normal limits.

If the PTHrp test is abnormal, it could mean you have a malignancy.

If none of the above tests lead to a diagnosis of parathyroid adenoma, sarcoidosis or malignancy as the cause, then you may have a genetic cause or less recognised cause of hypercalciuria, stones etc.

Odds on sarcoidosis is causing it and your doctor is unaware.

Of course, malignancy can be treated symptomatically but once hypercalcemia has set in, it is late stage and there is no hope for a cure. But I don't think this is the problem in your case because you have had symptoms for such a long, long time. It is just another thing doctors would look for in the ER if you showed up with hypercalcemia.

Acute Hypercalcemic attacks caused by sarcoid can be treated with rehydration, steroids, and perhaps diuretics.

Kidney stones and hypercalcemia can be prevented to a large degree with various drugs and natural treatments.

Drugs are:

Prednisone: Stops 1,25D production by granuloma in sarc, thus reducing calcium removal from bones to blood.
Plaquenil: prevents kidney stones for long term
Actonel: prevents calcium coming out of bones
Fosamax: prevents calcium coming out of bones
calcitonin: helps to lower blood calcium a bit
Ketoconazole: prevents stones long term in sarc.

Natural therapy:
Avoid sunlight
Cover up all skin in going out in sunlight
Use gloves to drive
Wear a hat outdoors
Wear zinc based sunscreen on exposed parts
reduce vitamin D but not calcium intake
reduce oxalate intake, berries, cabbage, cauliflower, broccoli, brussel sprouts etc.

Pris

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Pris, thank you! I hope you don't mind but I am going to print your reply and take it with me to the doc. Apparently this is hard to diagnose and I can understand docs wanting to make sure as to what the problem is exactly. The process is just taking so long and I keep running up against road blocks. I know this time I cannot give in and just let it go as I have done in the past as my symptoms are getting worse. I appreciate you taking the time to help, I have seriously been lost and just depending on my doc to know what he is talking about. I have had so many lab tests done in the last 3 months and the only thing that so far has resulted is high calcium with a normal parathyroid test but I don't have the numbers on that test yet either and if it is on the high end of normal I am going to question it.

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Wrong - You should not take my comments with you to the doc. I suggest you take a note of the salient points. I have rubbished your doc in my post. That will not endear either me or you to them! If you need back up with medical refs I suggest you either search this site or email me so that I can send you some. I am NOT a doctor, although I worked in both scientific research and pathology testing fields. I have little authority - other than my job which was taken away from me by sarcoid, the fact that I am a sufferer of over twelve years who has researched the disease from the start; and now have my calcemic issues and am leaking protein from my urine.
I suggest you look at parathyroid.com and look at the page on vitamin D. You need to get the issue sorted ASAP. If you don't get anywhere, try another doctor. If I have found doctors dismissive or slow to act in the past I have left and found a doctor who would take me seriously. "Mystery Diagnosis" mantra is "the persistent patient gets the diagnosis".

Pris

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