Kidney stone, Vitamin D

During a recent hospitalization I had a chest CT. Incidently, the scan showed that both kidneys had multiple kidney stones. They never told me at the time - only after an appt. with another doctor (second opinion) did he mention it. My primary doctor seemed totally unconcerned about the stones -even though I have a history of blood in my urine, mid back pain and even some poor BUN and creatinine results. To be clear, I am not experiencing any of those right now (except back pain) - but is it wrong to think that he should be somewhat concerned? When I mentioned that my last Primary MD - had me taking large supplements of Calcium and Vitamin D - he also seemed unconcerned and said there is no reason you can't take those.
It seems to me like he tries to act as though he is knowledgable about sarc - but really doesn't know as much as he thinks. (He is an internal medicine doc).

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On what basis did your pulm have you taking large doses of calcium and vitamin d?

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It was just my Family Practice MD that had me taking the supplements. (I have only been able to see a pulmonologist in the last month.) I stopped seeing the FP doc (for many reasons); and switched to an Internist - He is the one not worried about the kidney stones. I told him I was taking the Vitamin D because of low blood levels. He wants me to have a bone density test for osteoporosis.

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Hi there - ask your doctors for a 24 hour urine collection to look at the calcium eliminated in your urine, a parathyroid hormone measurement, and a serum calcium measurement. It sounds to me as though it is possible you could have calcium stones due to excess vitamin D levels. The vitamin D levels measured by your primary care doc are not the active D levels - in normal people that measurement would be fine. But for those with sarcoidosis, the normal feedback loops that biologically regulate Vitamin D levels (active form) are out of whack. So, your docs need to see what is really happening with your calcium levels (controlled by active Vitamin D). This answer is an oversimplification and overlooks a lot of subtleties, but it should help you talk to your docs. If you need more info, search this site for Priscurl - she is an expert and has provided a lot of info for many folks. Good luck - Laura

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Thank You! :)

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My Endo said it was okay to continue with Vit D. I decided not to. I found out that I have 3 kidney stones the same way you did. I started to pass one last July. It got stuck and I needed lithotripsy to break it up. Unfortunetly for me, Wednesday I began to pass the second one. And my urologist is closed for the 4 day weekend. So I have vicodin to keep me happy until Monday.

My Urologist says to drink Citric Acid (Lemon juice, lemonade, sprite, etc) to stop new stones from forming. My stone was calcium oxalate and calcium phosphate. So he said it is okay for me to take calcium. Hope this helps.

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Hi JoMaMa

I believe your concerns are valid. Sarcoidosis is a known cause of hypercalciuria. This is abnormally high levels of calcium in the urine. One possible sign of this condition is blood in the urine. If you have also had abnormal BUN and creatinine results you need to have this taken seriously.

Many doctors have women with sarcoidosis on supplements of calcium and vitamin D in belief that they are preventing bone loss. This is fine when the sarcoid patient is on highish doses of prednisone. However, if the patient comes off prednisone and is still on the same regime of calcium and vitamin D, then problems can occur if sarcoid remains active.

What happens normally in all people is that we make vitamin D from the sun's rays on the skin. This D is made into an active hormone by an enzyme in the kidney. This kidney enzyme is called one-alpha-hydoxylase. It adds a hydroxyl group to the vitamin D which activates it and allows it to act on the gut and absorb calcium from our diet. This calcium strengthens our bones. If we don't have enough calcium in the bloodstream which helps our nerves and muscles to function correctly, the active form of vitamin D will pull calcium from our bones to make up this deficit. The kidney prevents too much of this hormone being made by production of another enzyme which renders the hormone non-active. Thus in normal circumstances we can NEVER have too much of this hormonal D (also called 1,25D dihydroxyvitamin D3 a.k.a calcitriol). Sarcoid can potentially turn this rule on its head. I will refer to this active form of D as calcitriol from now on.

Normally healthy humans make D and prevent too much calcitriol being formed by enzymatic and hormonal feedback loops.

There are some problems which can arise with these loops. A common one occuring in humans is that another hormone, testosterone produced in large quantities by men, causes lower production of the controlling enzyme in the kidney which prevents calcitriol production getting out of control. Thus men are overall more prone to kidney stones than women and men with sarcoidosis are also more prone to kidney stones and kidney problems also.

Then we have the problem of sarcoidosis. Sarcoidosis is actually an abnormal source of the enzyme made normally in the kidneys which helps make calcitriol out of vitamin D. So in other words, sarcoidosis granulomas make the same enzyme which makes calcitriol out of D. The kidney can only regulate the calcitriol which it itself makes. The kidney cannot do anything about the calcitriol made by the sarcoid granuloma enzyme. Thus calcitriol can build up in the blood of patients which sarcoidosis. Many doctors are not aware of this and think that calcitriol is controlled by the kidneys. Not so in sarcoid, as the granulomas are an abnormal source of this hormone production. The excess calcitriol (hormonal D) has many effects in sarcoid patients. It causes absorbtion of calcium from the gut which can produce hypercalciuria, and it also causes resorption of calcium from bones which can cause hypercalcemia. Because there is excess of calcium in the blood stream, this causes the parathyroid glands in the neck to slow their hormone production which, in turn, slows production of vitamin D in the liver from the suns rays. Thus vitamin D production in the body is slowed in order to prevent the granuloma enzyme from making excess calcitriol. If a doctor prescribes extra D and calcium at this stage, he is pouring fuel on the calcitriol fire ramping up absorbtion and resorption of calcium in sarcoid patients. As the normal checks and balances which the body has are overridden by synthetic D and calcium, the kidneys take the brunt trying to remove the excess calcium from the bloodstream. As they remove this excess calcium, it begins to calcify the kidneys, forming stones and lining the tubules. This can damage kidney function temporarily or even permanently in excessive cases. As the kidneys fail to remove excess calcium, the sarcoid patient will eventually develop a thirst, desire to urinate and may begin to have neuropathies. Calcium may come out in bodily exudates such as those from the eyes. The person will become weak and may be unable to walk. They may be severely dehydrated and may begin to vomit. Stupor and loss of consciousness may ensue. They may have heart arrhymthmias, and could have a cardiac arrest, if they are not diagnosed and treated. The kidneys may have to be supported with dialysis. Treatment for a person with sarcoidosis is usually loop diuretics, prednisone, and rehydration. Prednisone converts the calcitriol to a non active metabolite which has no action on gut or bone. Any person this happens to should never have D or calcium again under any circumstances.
The pathological tests which can differentiate sarcoidotic granulomatous production of 1 alpha hydroxylase enzyme from a normal D deficiency are these:

D deficiency will have a low blood level of vitamin D. Calcitriol is never tested. Calcium should be low or normal. Parathyroid hormone will be normal or high normal or high. Parathyroid hormone stimulates D production, so naturally it should be highish in someone with a D deficiency. A really high parathyroid level often signifies a tumour. This also produces high calcitriol and calcium levels, but unlike sarcoidosis, prednisone and rehydration will not help - only removal of the tumour will help recovery even though the symptoms of hypercalcemia will be the same as a person with sarcoidosis.

In sarcoidosis, the D level will be low, but unlike a person with a D deficiency, what is making the D level low is the parathyroid gland whose hormone is decreased in order to slow production of vitamin D. This is because a doctor needs to test for calcitriol, calcium and parathyroid hormone levels before he puts a patient on supplements, especially if they have sarcoid and are not on prednisone. This rarely happens unless a doctor has had hypercalcemia in a former sarcoid patient and knows the dangers. In the sarcoid patient who is not on prednisone and has a low D level, if tested, a doctor may find the blood calcium high, the blood calcitriol level high and the parathyroid level abnormally low. This will signify the patient has a problem caused by his sarcoidosis and does not have a deficiency of D. Giving D or calcium will make this patient sicker and not better. It will weaken his bones more and will do nothing to strengthen them.

I have had abnormally high numbers of red blood cells in my urine since 1989 - ten years prior to my diagnosis with sarcoidosis. When I was finally sent to a specialist who thought I was a sero-negative Sjogren's patient, she sent me to a kidney specialist to have this consistent blood cell problem investigated further. Creatinine Clearance was off, but further tests found kidney function was essentially normal at that stage. Microscopic examination of the red cells showed that they were dehydrated and star shaped rather than like a normal round concave disk. This meant they came from the high urinary tract (kidney) as opposed to the bladder or urethra. Even though the kidney was determined to be the source of the red cells, the kidney doc did not want to risk a kidney biopsy. My GFR, creatinine and BUN are also abnormal now 20 years from those red cells first being found. I believe sarcoid hypercalciuria was the cause of this problem as nothing else has been identified apart from a doctor suggesting it could be thin membrane syndrome. I always have both red and white cells in my urine on dip stick and micro urinalysis which are in abnormal numbers still.

Get tested for calcium, phosphate, calcitriol, urine calcium, microscopic urinalysis and parathyroid hormone less if you are not taking prednisone at present.

Dr Michael Holick, one of the world's foremost experts on vitamin D knows that sarcoidosis produces excess calcium in the blood and urine of some sarcoid patients. For that reason he recommends that sarcoid patients vitamin D levels be kept below 50 at all times and that they should not be given high supplements of vitamin D. If they are D deficient, they should not be given more than 8000 IU a week of D and he recommends monitoring of calcium fortnightly while on supplementation. There are papers on vitamin D, calcium and sarcoidosis on the Vitamin D Council's web site which can be accessed by patients and physicians. The papers date from recent back to 1948.

Pris

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Wow Pris!
Thank you for all of that information! Do you have 'writer's cramp' now? I hope not! I am going to copy it to my doctor. I am not sure he will take it well - but he needs to keep learning right? I wish that I were not in my 'brain fog' - and I would understand and appreciate this all better. That is a big part of why I ask for help from others! I so appreciate your care and concern - to write such a complete answer back to me. PS Pris, did you see that I sent you a message on Team Inspire? Thanks again, Jo

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Chanca Piedra or stone breaker tea. Check it out. Just had my first cup, I take three a day. Never had a stone. Stops them from forming.
Used in many countries. Easy to get and has a long list of other things it is used for including gout.

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Hi JoMaMa,

I would rather you didn't show my post to your doctor. I am not an MD and he may not like you getting information off the internet. You would be far better to point him to the D council's site to add ''sarcoidosis'' in the search engine. There he will find sarcoid and vitamin D discussed in papers dating from the present back to 1948.

Pris

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Thanks Pris - will do!

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As long as you don't have problems with kidney stones... I had hundreds of them so painfull i wanted to kill myself. At one point i had them daily. Still if your blood and proteine urine levels are not right don't ever take vitamine d. also large quantities of calcium supplements are not good.

We get prescribed d, wrongly, cause in sarcoidosis normal D 25 in converted to d 1.25. that's why our d levels are low but d 1.25 high. In normal patients there is never conversion from d to d1.25. even a lot of doctors with sarcoidosis patients don't know that. D 1.25 causes kidney stones and osteoporosis. adding d in this case will make problems even much worse.

contue checking your urine every month or so and watch out for kidney stones. and never take d supplements! If you get kidney stones plaquenil or nizoral might help and potassium citrate.

David

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Hi JoMaMa,

High 1,25D is caused by macrophages in the sarcoid granuloma. This is a source of the enzyme most people only ever have in their kidney. What the kidney makes, the kidney can unmake, but sarc granulomas don't operate that way. They just continue to convert any vitamin D they can get their hands on into 1,25D. 1,25D is worse for your bones than prednisone. Prednisone only strips calcium from already old bone. 1,25D, which is a cousin of prednisone, strips all bone new and old. Therefore, a doctor giving D to a sarcoid patient with active unmedicated disease is like giving super high doses prednisone. It totally defeats the purpose unless you are on prednisone already. Prednisone converts 1,25D to a non active form of D which does not act on bones or gut. Therefore if you take 15 women just diagnosed with sarcoid in the chest (and say, for instance) also with sarc in the eyes, spleen and liver, and you put 5 of them on prednisone, 5 on vitamin D and 5 on a placebo and left them for 2 years after which the bone densities were remeasured, the women with the best bone density will be the ones who were on prednisone, followed by those on a placebo and then those on D. Hey, you know what? This is a study which ought to be done, but there is enough in the medical journals already to be able to predict the results from studies already done. Some doctor-researchers however, did not understand the implications of their studies, even though they found it odd that the women on prednisone came out on top against their own predictions. But then, these doctors were not aware of the physiology of sarcoid, nor the pharmacology of prednisone.

Pris

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