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No, I’ve never had the 24 hour collection test. I’ve never been told about that. They did test mine a few years ago and it was calcium based. Has the UroCit, 10 MEQ stopped you from making more stones? I’ll have to check on the low oxalate diet. A few years ago I was told they’re calcium...

2 years ago I had a kidney stone attack. I couldn’t get help from our medical clinic, after 4 days of crying, I found a urologist an hour away. When I went to see him, he sent me directly to the hospital. When he got in there, he said infection came pouring out. I had to live with a stent...

Hi KansasGuy, I also live in Kansas. I had the VSG in 2008, lost 182 lbs and regained 110 lbs. I decided to investigate the DS. This site was enormously helpful! Ask all the questions you have, they will give you all the help you need. I finally decided it was well worth traveling to...

I’m so sorry you’ve gone through so much. I just discovered a plant based protein shake that I really like “Owyn Protein shakes with 35 grams of protein “. Hope this helps!

I contacted Dr. K’s office and had my PCP fax him my blood work results. I have a video call with Dr. K next week. Hopefully, I can get help with getting an infusion.

Vitamin A mine 96.2 range 22.0-69.5, I take 25,000 per day. Copper mine 175, range 80-158. Vitamin E (gamma) 0.3, range 0.5-4.9. I went around and around with my hematologist nurse and she said my iron is normal. They will not ok an iron infusion.

Thanks so much for the help! I hope he listens, he gets pretty mad when I question him. I don’t think they realize what the DS is cause when I had kidney stones they told me to quit taking calcium!! Even when I told them I have bone loss in my mouth! Sorry, but I’m so frustrated, they don’t...

My Oncologist/Hematologist keeps saying you’ll need an infusion next, then next time, he’s been saying it for over a year, and makes me come in every 3 months. He doesn’t take my Ferritin level. I have severe RLS. My ferritin is 10, iron 76, folate >20, iron bind capacity 457, hemoglobin...

Yes, it was my dentist that told me it is bone lose.

Thank you for the information I will check into my dexa and an endocrinologist. I never thought of an endocrinologist. Thanks, I’m getting so much helpful information that I’m feeling more confident about what actions to take.

Thanks for all the helpful replies, I think I need a new Dr. I’m taking every suggestion and taking action! When I questioned my hematologist, he said Don’t you trust me! I don’t anymore, he only does a small portion of the blood tests I need. It’s time I be my own advocate.

I’m afraid to take more calcium because I keep getting kidney stones. What is Rocaltrol?

D is 31, I don’t see PTH, would it be called something else?

I am losing bone in my mouth, I have teeth that the roots are now showing, i take Citracal (650 mg) 3 times a day. And calcium carbonate (600mg) per day. I was wondering if something else I’m not taking could cause this. Also been arguing with hematologist about another iron infusion. He...

I’ll look that up. Thanks

My GP said it is such a big one, he thinks it’ll stay up there. But he wanted me to see my urologist to see what he thinks. I got a call from urologist office this afternoon and she said if I don’t feel anything then he doesn’t want to see me till my appointment in October. I asked if he even...

I’m chemistry challenged, but I think I get it! . I’m going to keep my calcium citrate in my routine, but add calcium carbonate! Thanks for all the help!! Here’s to no more kidney stones?! (Except the big one that’s still up there!)

Wow!! Thanks for all the knowledge and help!! I’m going to buy calcium carbonate and quit the calcium citrate and see if that works. Thanks!!

I live in small town Kansas, I think Dr’s here just aren’t interested in knowing about the DS. So how much calcium carbonate and then should I discontinue the Citracal?

I do take 1000 vitamin C, I’ll stop taking that immediately.