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Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

Can MSK cause hypercalcemia?

I was diagnosed with MSK last December. I've been struggling with kidney stones for over a year.  Urologist did a 24 hr. urine collection which showed hypercalcemia (elevated calcium in blood) and extreme hypercalciuria (elevated calcium in urine).  She though it pointed to hyperparathyroidism.  Tests for that have been inconclusive so the endocrinologist and ENT doc think maybe I should see a nephrologist to see if the MSK could be a factor before I have surgery for a parathyroid adenoma that might not exist.  

Is it possible that the MSK is causing this?  I obviously don't want to have an unnecessary surgery, but I'm not sure what else could be causing these test results.  Thanks for any help.
5 Responses
Avatar universal
Although not a doc, I suppose that potentially some of the remedies used with MSK could cause an increase in blood calcium.  My daughter's current nephrologist said that one of the reasons she didn't want to put her on hydrochlorothiazide(diuretic) is that it would decrease urine calcium but increase blood calcium.  The pediatric nephrologist she had when she was younger had her on the hydrochlorothiazide.  This is all very complex!   So probably a good idea to see all the different specialists first before deciding on a coarse of action.  
168348 tn?1379360675
COMMUNITY LEADER
Stopping by to say hello .. thinking of you.  Please feel free to post an update.

C~
Avatar universal
I have MSK.  I was born with it.  I have severe amounts of kidney stones and my disease is bilateral.  I was diagnosed at 17 when I almost died.  Now at 48 I have acute high calcium levels in blood and urine.  My 24 urine came back with a note from the lab that the test had to have been done improperly because my levels were impossibly high.  I had my submandibular gland removed last May and it was calcified and full of sarcoidosis.  So now I have sarcoidosis hypercalcicuria along with fibromyalgia. If you feel like you have the flu from the neck up, sore throats and such check for sarcoidosis.  My gland never swelled!!! I had a lot of sore throats.  
168348 tn?1379360675
COMMUNITY LEADER
Wow! That's interesting. Glad your docs were able to finally figure that out, but so sorry about having such high levels.

C~
Avatar universal
I have had high levels of calcium and other minerals, have osteoporosis and widespread pain so was evaluated for parathyroid as well. My PTH was normal at retesting, my bone scan was normal and my thyroid scan was too so they ruled out parathyroid tumours in my case.

I can't imagine them doing surgery if they haven't found a tumour, honestly I've been so unwell and so desperate for reilef if they had found any I would have had the surgery anyway on the chance it would have worked but that's just where I'm at. If you're unsure a second opinion should help throw some light on your situation.
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