Constant Kidney Stones and high Parathyroid Hormone but normal Calcium levels?

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Hello! My name is Violet and I am 21 yrs old. I have passed kidney stones on a daily basis for the past almost 3 years. It took me until now to find ONE doctor who was willing to take his time and invest it in trying to find out what is wrong with me and a concrete diagnosis. He immediately tested my parathyroid levels because he had seen this happen before and that be a cause. I've done my research on this stuff and I've talked to my doctor. I think where we are stuck is that I have fluctuating PTH in my blood test results. The first time it was 87, the second 42, the third 79. This led my doctor to wonder if a messed up parathyroid was causing excess calcium in my body and my kidneys couldn't process it so they were forming stones. He really thought it had to be a tumor on the parathyroid gland and a large one to cause the amount of kidney stones I pass. He ordered a neck CT. I'm clear. No tumor. But you can still have hyperparathyroidism. The only thing is, every time I have heard of hyperparathyroidism causing severe and chronic kidney stones is when you have really high calcium levels in your blood from your malfunctioning parathyroid glands. My calcium levels have always been normal. Has anyone ever experienced this? Please. If anyone knows anything at all about my situation, I beg you to please talk to me about it. I am at a point where I am unable to function normally in any way in my day-to-day life. For the first year and a half that this was happening, I laid in a ball and puked and went to the ER. No work or school. Finally, the last year I've forced myself to get a part-time job and do school online. But I'm slipping up majorly due to the constant puking and insanity of the unbearable pain I'm in every day from the kidney stones. I need answers and help. Desperately. If anyone has ever heard of this, please talk to me about it. Please.

Best,

Violet

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  • Posted

    Hi there Violet, I have passed kidney stones but not on a daily basis.  Several factors can cause them, like having a family history of it. Another reason is not drinking enough water or dehydrated. I think if you are having abnormal levels of parathyroid  you can cause other problems within the body. I know and have experinced the horrible pain, of the kidney stones and I feel for you. You may have to have a pattern by having levels checked at different times to catch when the level is too high.  Since the body can be complex they may have to do a series of blood draws while admitted to hospital or they can do it as an outpatient.  Please go to a very good endocrinologist and have the specialist order these tests.  High calcium levels can also cause other health problems, so this must get sorted out.  I have heard of people having intermittent highs in levels of cortisol and other horomones.  We have glands in our bodies and they do go haywire and do weird things.  I hope this helps.
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    • Posted

      Wow. You have no idea how much this helped. I have had high levels of cortisol and other things as well. Also my vit d is near to zero even tho im on super strength supplements. You are so right about how hormone levels can spike and decrease randomly. This could very well be the solution or it could lead to the solution. Thank you. Words dont express how grateful I am to you for sharing this with me. Thank you. I hope that you're doing well!
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  • Posted

    Hi Violet,

    Just as it is normal for your PTH levels to fluctuate, it is also normal for your calcium levels to fluctuate. I certainly would not try to contradict what your doctor is telling you, but if you have NOT been to www.parathyroid.com I would strongly encourage you to do so. In addition to the fact that calcium levels jump around and can vary significantly on different days, it is also possible to have a parathyroid tumor with a normal calcium level. It is rare, but it does happen and is explained on the website I listed. Also, unless you have a VERY experienced radiologist, parathyroid tumors do not show up on 40% to 60% of all the various types of scans that are typically done.

    You do NOT have to have extremely high blood calcium levels to have kidney stones.  Also, you do not have to have extremely high calcium levels to feel really bad in addition to having kidney stones. Even Calcium that is "just a little bit" high can make a person feel terrible as was the case with me. Anyway, the website I gave you has dozens and dozens of pages of information covering just about everything there is to know about hyperparathyroidism. 

    I don't know if you have other complaints besides kidney stones, and hyperparathyroidism symptoms in someone as young as you are might be slightly different than in someone my age (55, about 44 when this all started)) but mine were initially joint pain, exhaustion/fatigue, muscle pain, memory problems, depression and several more. My doctor told me for several years that I was just getting old, but it turns out that I had hyperparathyroidism and I had my tumor removed about three weeks ago. For the first several years my calcium levels were only about .2 above what was indicated as "normal" on my lab slip, and my Dr. told me that could not cause me any problems. She was wrong. 

    The Dr. I went to who finally diagnosed my Hyperparathyroidism and Adenoma, recommends having three blood tests done a week apart. Each test should test the calcium levels and the PTH levels at the same time. There is also even an app for your phone you can purchase to enter your lab values that will tell you your risk of having hyperparathyroidism. it's called CalciumPro.  Having extremely low Vitamin D levels is another thing that, in combination with high PTH levels is indicative of a parathyroid tumor.  Anyway, you must not give up on trying to find someone who can help you!  Whether this is your problem or not, you will be in my thoughts and prayers. Do not give up. You will get this figured out one of these days. I know how frustrating it is to be in pain and feel like no one can help you, but I finally got my diagnosis, and you just have to have faith that you will too. But please check out that website. It should be able to help you figure out one way or another if a tumor on one of your parathyroid glands is the problem.

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    • Posted

      Wow...you have no idea how helpful you've been to me in telling me this. I saw a few websites that said the same as you're telling me. My primary care also said I could have a parathyroid tumor without normal or slightly raised calcium levels. There have been a few times my blood calcium has been over 10 but not by much. My primary referred me to an endocrinologist who did blood work testing for various cancers and a CT with dye. When nothing showed up on the CT and my PTH level was normal that one time, he said it couldn't be a tumor. I asked the likelihood that the radiologist missed it and he said it would have to be pretty large, a tumor, to give the horrible kidney stones I've been passing so there's no way they missed it. He told me that low vitamin D levels along with genetics are the cause of my kidney stones. That there is nothing to be done...my kidneys will fail...and soon...it's been scary. When I went back to my primary (who my endocrinologist said doesn't know as much about this as him, yeah you can tell he's a cocky ass haha) he said it's still possible they missed the tumor and he insisted on another blood test for my PTH levels (so far I had been tested twice, once it was in that high 80s early 90s, the second time it was barely above normal levels at like 20 something or 30 something). The results came back and again my PTH was 87. That's when my primary said that he really thinks this is what this is. Hyperparathyroidism. And I told him that I cant keep waiting to figure this out, I've been waiting 3 years and my daily life is me puking and almost having heart attacks from pain. He asked me to give him a chance to keep looking into this. That he wanted to help and if he can't then he'd send me to UC San Francisco and get me help there. I see my primary in a few days to discuss this again. It's just not happening quick enough. The suffering is getting to me. It really is. I can't function. At all.

      As for what happened before all this, I was diagnosed with rheumatoid arthritis, fibromyalgia and lupus. All hit me VERY hard. The joint and muscle pain was/is insane. After a year of that the kidney stones started. Maybe there is a connection?

      All of your help means the world to me. I'll check out the website you suggested. I'm so glad that you got your answer. I hope that you are doing well now and that you continue to. Thank you doesn't cover it, but thank you.

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    • Posted

      Hi Violet,

      Oh my gosh, I SO hope that someone has helped you by now. I had my parathyroid Adenoma removed two months ago on April 17th, and I feel SO much better!  My need to constantly sleep was gone within a day, as was the worst of my pain. Then slowly over the last two months my energy and strength has returned. My memory and concentration is also SO much improved I can hardly believe it. BUT, here is something else for you to think about. For about the last three years my husband has also complained of a lot of the same symptoms I did. I would often wonder why, and at one point we had the water in our house tested, wondering if there was something in the water. Everything tested fine. He also has been having kidney stones for about the past 6-8 years. He had one calcium test come back at 10.3 with a PTH of 56 which piqued my interest and he asked his doctor to test again, but his doctor refused, and told him he was fine and nothing was wrong!. While I was down in Tampa having my surgery I asked my surgeon my questions about my husband and he said that based on his kidney stones, calcium level of 10.3 and his vitamin D level of 19, that more investigation should be done. So he wrote three orders to have blood drawn and tested. Each order asked for serum calcium, ionized calcium, and PTH.  His first calcium came back at 9.7 with a PTH of 94, then 10.0 with a PTH of 103, and then 9.6 with a PTH of 103.  I believe his ionized calcium was right at 5.5 each time. The Doctors at the Norman Parathyroid center evaluated all his labwork, symptoms and called this past Friday Friday to tell him they feel there is a 95% chance he has Hyperparathyroidism.  He is scheduled for surgery on July 24th. He and I are both  "atypical" because I had high calcium and "normal" PTH levels, while he has normal to slightly elevated calcium and mostly high PTH levels  The doctors at the Norman Parathyroid center never use scans or x-rays of any kind to diagnose because they say the adenomas are missed too many times, or might pick up only one, when you have two etc.

      Before my surgery my kidneys were in stage 3 kidney failure, and so are my husbands, BUT I was told that after surgery to remove the adenoma there is a high chance that your kidneys will recover at least partial function, and sometimes return to almost normal functioning again!.  So I am keeping my fingers crossed. You labs, kidney stones and symptoms sound SO much like my husbands!  Don't give up on this!  Keep digging, and if you have to, keep firing your doctors until you find one willing to look for the answers.  There is a Facebook group called Parathyroid Disease Awareness and Support Closed Group.  If you do a search for it, then request to be added you will find dozens of other people in various stages of dealing with Hyperparathyroidism. Some pre-surgery, some post-surgery, some who are still trying to get diagnosed. I would say the majority of us have had to fight for every test, and go through a number of doctors before we found one who understood the disease, or was willing to listen to us and learn about it. If you are interested in joining that group you will learn a lot and get a lot of support. I highly recommend them! 

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  • Posted

    Violet,

    Have you found any answers? I have just underwent Exploratory Parathyroid Surgery and no adenomas were found. I have found no other such cases. My PTH is all over the place and I also have chronic kidney stones and many other symptoms. I know this is an older discussion. I hope this finds you Violet.

    Lanie

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  • Posted

    I had surgery at Norman Parathyroid center about a month ago. My calcium was high but PTH was normal. My vit D was extremely low.  I have been sick for 23 years. They told me they thought I had parathyroid disease.  I went to Tampa and ends up I just had an enlarged gland. All my other 3 were normal. I still really don't understand the difference in an enlarged gland and a tumor. Most sites say a parathyroid tumor is an enlarged gland. They usually give pictures and all but I didn't get any because of not having an actual tumor. Again, I haven't found much out there talking about just an enlarged gland but no tumor. But anyway, the dr said he wasn't sure if the surgery would help my symptoms or not. We would have to wait and see. So far, i haven't noticed much of  a difference. And I have a kidney stone right now and I'm in pain!  It's only been 4 weeks since my surgery in Tampa!  Ugh. But, I wanted to say that it never showed up on a scan and no doctor found it. I am a nurse and when I found their site, I started pulling old blood work. And my calciums were high and vitamin D low but PTH normal. But they def thought I needed to come have the surgery.  They were really nice and everything runs very smoothly there. The only thing I would say is that the website does act like you pretty much are fine after the surgery.  But I had complications and they said it was a thyroid storm from them fooling with that area. I had blood pressure problems and hormonal imbalances and I would turn beet red like I was on fire and then just cry and shake and felt like it was the end of the world. I barely made it on to the plane the next day. And it took over 2 weeks before I could get things a little more balanced. I also had problems with my incision. Nothing they did, but I have lupus and don't heal well so it opened and it doesn't look the greatest. Most people, from what I read, do not have any of that but I have lots of health issues and I did.  But I would def recommend them again!  I do wish they did a little more follow up after you leave. If I had one complaint, that would be it.  But the doctors, nurses and staff were very efficient and very nice. Anyway, hope this helps someone out there!!!

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