Kidney Stones

[danecraz1]

I have had two large stones, one in each kidney (11mm and 10mm) which resulted in 4 surgeries in the past two months. Today my 24 hour urine test revealed high calcium of 346. My urologist did mention possible hyperparathyroid and I have been referred to a nephrologist. For the past two years I have had fatigue, burning in feet, sore joints and thinning hair which I attributed to aging...I'm 45 but feel 65. Anyway, has anyone else had high calcium results which were attributed to hyperparathyoid and if so how have you been treated for this?

[lioness]

Unfortunately my urinary calcium wasnt addressed until this year & I was diagnosed with kidney stones two years ago. I had one 24h in 2006, which was high not mentioned by my treating urologist, then finally another in 9/07, still high. Then my blood calcium was checked which was normal. My stones were ALL infectious 1-3 cm bilaterally in both kidneys. I have had 5 surgeries in two years and will have another one scheduled soon. it was good you were referred to a nephrologist, either that or an endocrinologist. I hope you get better.

[Smiffy51]

I have had hyperparathyroidism. The only treatment is surgery to remove the overactive gland (- there are four by your thyroid, they should be tiny but one is probably enlarged because it has a benign tumour on it)). There is no other treatment. You need to see an endocrinologist.

After my parathyroidectomy it took a few months for the remaining three gland to start functioning properly again; I had to take calcium for a while. The problem is solved now, but I had to have a large kidney stone removed surgically as a result of the hyperparathyroidism.

[Kay Pasa?]

Very curious to know if you had the traditional "open neck" parathyroidectomy, or were you able to have the MIRP (minimally invasive radioactive parathyroidectomy)? Really would help me to find out more about both surgeries, because I have a parathyroid adenoma that really needs to be removed. I've only waited this long (8 years now) because I didn't like the idea of having an 8 inch neck incision (and many, many possible complications afterwards). I just joined the forum tonight, when I saw the posts on hyperparathyroidism. When you have a chance I'd love to know more, thanks! Kay

[Smiffy51]

I had open neck surgery, the other kind is not available in the UK, but there's no 8" scar, it's more like a neat 2" scar & after a couple of years was hardly noticeable.

Please don't wait, your bones are important! Also, the calcium released from them will be building up in your blood vessels. My only complication was the sudden dropping of my calcium levels which was swiftly dealt with by the nurses.

[Stonedinmd]

I have been told that I have calcium in my urine but they say my thyroid is fine. Now i wonder if they are right.....

[Smiffy51]

It is not the thyroid that affects the calcium levels in our bodies, but the four tiny parathyroid glands that are by the thyroid.

You need your parathyroid hormone level checked to see if you have hyperparathyroidism, caused by a benign tumour on one of the parathyroids.

[Kay Pasa?]

I can't tell you how happy I am to have found this thread! I've had kidney stones since I was 19 years old (many requiring Lithotripsy). My largest was 12mm (ouch). Ironically, I also had 5 broken bones by the time I was 10 years old (popular thinking back then was that I didn't eat enough calcium). Well all that extra calcium found its way directly to my kidneys and formed many stones once it got there. I've struggled with this my whole life and every single urologist has told me there was nothing that could be done about it (of course, I can keep having them removed, but I was looking for some prevention - or better yet a cure). Oh, and the ever consistent advice of "drinking lots of water" (old news, been there, done that). Even all that water didn't stop them from forming, or from trying to pass through the ureter tubes.

I had a CT scan done a few years back to check my bone density (full on osteoporosis at 35 years old)! Yikes! But the good news is that kidney stones and osteoporosis (together) are two of the main symptoms of overactive parathyroid disease. Sestamibi scan showed enlarged lower left parathyroid. After extensive research, I'm convinced that there is no other cure than to remove the bad parathyroid. Bad news was that once I read the details involved in the type of surgery required, I opted out (I've never been good with surgery/anesthesia/all that). Plus, there was the slightest chance that they could damage my vocal cords or even the trachea (not a huge chance, but still felt risky).

Just found out there is a clinic in Tampa, Florida, where the surgeons perform only one kind of surgery, ever - Parathyroidectomy. And they're supposed to be very good at it (maybe the best). Any information that anybody has on this (good and/or bad) will be much appreciated, and extremely helpful to me! I'll be happy to follow up here if I get the surgery myself, and I will report the good and bad as I experience it, as well as the results of having it done (like hopefully feeling a lot better all over). I'm 43 now (but feel like I'm 70 - or at least how I think a 70 year old would feel). Again, so glad to find the info. in here! Many thanks.

[Smiffy51]

Kay, I think you will feel much better when you have recovered from your surgery - the extra calcium affects sufferers mentally as well as causing joint & shooting pains & kidney stones. It is a big operation but it sounds as if you will be in the best possible hands.

I have been on calcium tablets since surgery; in hospital I took ones that dissolved in water.

[Kay Pasa?]

Thanks for the optimistic outlook! I'm actually starting to look forward to the "surgery" now. I still can't believe how toxic the extra calcium is to the body. I wish more people (and doctors) knew about this disease (as it is so completely under-diagnosed, in my opinion). Or perhaps mis-diagnosed is a better word for it. When I was first diagnosed 8 years ago (and considering my options), even my Endocrinologist wasn't that anxious to recommend surgery. She said I could just "wait and see" (and since all of my symptoms are so much worse now), I guess that is what we were "waiting" to see?

Oh well, I'm grateful to have the information now, and if there is a way for me to help get this important information to others who need it, I hope I can do that too.