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Date of last update: 10/09/2017.

Forum Name: Nephrology Symptoms

Question: Frequent Kidney stones, pain, doctors confused

 mijo - Sun Aug 29, 2010 3:32 pm

For the past 3 years i have been having kidney stones and pain which starts in my back and travels round to my bladder. The occurrences have been becoming more frequent and I have visited many Urologists (they say drink more water) - surely there is better advice than this. I have done 24 hour urine collections (oxalate crystals and super saturation of calcium). I have been to the ER when the pain has been too severe, CT scans always reveal stones in both kidneys (and never the same number - so something is happening to them).

Lately I have been having bone/muscle pain alternating with Kidney stones. I have had pain in my hands, feet, knees and elbows. Migraine like headaches (behind one eye only). My energy level is low. I fatigue easily and can sometimes not even get up to feed myself. I am often not inclined to eat, even if I could make something.

I have occasional heart palpitations and night sweats. Clammy skin.

Clinically the various tests have shown: high normal PTH (52-65), normal serum and ionized calcium, low vitamin D, High Rheumatoid factor (56).

RA has been ruled out.

The doctors do not feel that the high PTH is an issue, though isn't it odd that the PTH is high but the calcium is normal - shouldn't a high PTH imply a low calcium?

The Vitamin D level (12-19) has been of concern to the doctors. I take the 50000IU (once per week) and almost immediately my bone pain increases and my energy levels go down. This lasts for several days, when the kidney pain takes over. By the time it has all calmed down it is time to take another Vitamin D pill. The endocrinologist, or the PCP, does not understand (or acknowledge) that this is happening.

I am at my wits end and do not know what to do next, or who to turn to. My life is reduced to sitting and waiting in pain. I have given up my job and most of my personal hobbies, my husband and I are now just trying to figure out what to do next.

Any advice?
 Dr.M.Aroon kamath - Fri Sep 03, 2010 1:39 am

User avatar Hi,
The debate over what the optimal blood levels of vitamin D are and what is the appropriate dosage for supplementation continues to exist.Moreover, the "Tolerable Upper Intake Level (UL)" is also unclear.

What is meant by supplementation is the dose needed over and above the amount available from dietary sources + what is available via the skin (both of which are variable and difficult to ascertain). The amount absorbed via the skin depends upon the geographic region where a person lives (especially the northern latitudes) and the seasons(less in winter season).

Dark skin blocks ultraviolet wavelengths of light. Obesity results in sequestration of vitamin D in the excess fat so it is not available for use (although in storage). Thus, circulating 25(OH)D levels often underestimate the total body stores. Aging also lowers vitamin D levels as the aging skin's ability to make vitamin D declines.

There has been considerable variability in results of laboratory estimation of the level of 25-hydroxy-vitamin D. Falsely low or high values are not uncommon depending on the particular technique or laboratory used. Just over an year ago, in July 2009, a standard reference material has become available, which should result in better uniformity in standardization between laboratories.

A vitamin D level below 10 nanograms per milliliter is generally considered to indicate "Vitamin D deficiency". This should not be confused with the more controversial "optimal blood levels" for a given population to maintain health.What the optimal levels are, is as yet inconclusive.

In the US, Food and Nutrition Board (FNB) of the Institute of Medicine in 2007, identified >15 ng/mL (> 37.5 nmol/l) as adequate for bone and overall health in healthy individuals (please note that 1 ng/mL = 2.5 nmol/l). Others recommend that one should aim for vitamin D blood test levels of 30 ng/mL or more. You have not indicated whether the Vitamin D level of (12-19) is in ng/mL or in nmol/l).If it is in ng/mL it is close to being vitamin D deficient (borderline) if one goes by the FNB guidelines.

The Vitamin D Council (a non-profit organization promoting Vitamin D and informing people about the dangers of being Vitamin D deficient) recommends optimal blood levels of vitamin D of 50-80 ng/ml.if one goes by this, your values clearly indicate suboptimal levels.

The Institute of Medicine (a not-for-profit, non-governmental American organization) currently recommends vitamin D supplementation at the following levels:
- 200 international units (IU) per day from birth to 50 years of age,
- 400 IU per day for adults aged 51 to 70, and
- 600 IU per day for adults 71 and older.

No extra benefit is obtained from taking more than 400 IU/day except for therapeutic indications. "Increased intake of vitamin D (greater than or equal to 1,000 IU/d) -- particularly during the winter months and at higher latitudes -- and judicious sun exposure would improve vitamin D status and likely improve the overall health of the U.S. population".
Adit A. Ginde et al. "Demographic Differences and Trends of Vitamin D Insufficiency in the US Population, 1988-2004". Arch Intern Med. 2009;169(6):626-632.

The National Institutes of Health (NIH) has a "Tolerable Upper Intake Level (UL)" of 2,000 IU/day, while newer studies indicate a UL as high as 10,000 IU/day.

Taking very high daily doses of vitamin D - for example, 50 or more times the recommended daily allowance (RDA) over several months, can cause toxicity and high calcium levels in the blood. Some researchers recommend that daily low doses are safer than infrequent high doses.

Your calcium levels apparently are normal, but the PTH is at the upper limit of normal range(still within normal limits). A high PTH with normal calcium levels could occur with mild magnesium deficiency. This should be excluded. Your vitamin D dosage should be based several considerations including,
- where you live,
- your skin color,
- life style,
- likely dietary intake,and
- vitamin D levels.
Individuals on relatively higher dosages should be monitored for possible toxicity (calcium and 25-OH-vitamin D levels checked weekly at the start of supplementation, then on a monthly basis). As you are on a higher dosage schedule, you need to be carefully monitored,especially so because of the history of recurrent renal stones.
Best wishes!

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