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Joules

Dr. Hive - Hypercalcemia

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So I've had high calcium for over a year.  I've been tested and scanned multiple times for one obvious...a parathyroid problem, but it's fine.  I've been taken off both calcium supplements and vitamin D, since they can cause higher results.  I already have osteopenia, so I hate not taking calcium.  In my most recent blood test the calcium was 10.7, not super high but high, and the vitamin D has tanked to 36.  My vitamin D was in the single digits before supplementation.

 

The other obvious is cancer and they have recommended colonoscopy, mammogram, etc.  I have a whole host of autoimmune diseases and wonder if this is just "one of those things."

 

Does anyone have any experience with hypercalcemia from other causes?

 

 

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My dad had high blood calcium levels for years with a normal range PTH level.  He was ultimately diagnosed with a parathyroid tumor, which he had removed about 2 years ago.  A co-worker of mine has also had high calcium levels and only recently had her first elevated PTH level.  She is scheduled for surgery in the new year.  According to my dad's surgeon, parathyroid tumors are frequently missed or misdiagnosed.  This is my favorite page - I love the charts.  If it's not helpful, feel free to ignore.  

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My dad had high blood calcium levels for years with a normal range PTH level.  He was ultimately diagnosed with a parathyroid tumor, which he had removed about 2 years ago.  A co-worker of mine has also had high calcium levels and only recently had her first elevated PTH level.  She is scheduled for surgery in the new year.  According to my dad's surgeon, parathyroid tumors are frequently missed or misdiagnosed.  This is my favorite page - I love the charts.  If it's not helpful, feel free to ignore.  

 

Oh my gosh...that is SO helpful.  I've just scanned it, but I'm in the A confusion area.  The best part is the malignancy chart...that is definitely not me  :thumbup:

They have done an ultrasound and I'm in the watch-and-see stage.  They are still debating taking the thyroid out, so I wonder if they can poke around while they are in there for that?

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I still take vitamin D.  And I upped my magnesium. 

 

I am taking as much magnesium as my tummy can tolerate now, and I added back the vitamin D yesterday.  Only my D levels went down, not the calcium.

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Do you think a lack of vitamin K2 might play a role?

 

I actually haven't read about that...off to the google...

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Have you seen an endocrinologist? There are metabolic bone disorders that cause high calcium and osteopenia/osteoporosis, even if you are just a carrier for the disorder. Since your bone density is low, maybe your body is not using calcium properly, in which case, supplementing with other minerals and/or vitamin D might be contraindicated. You could ask for a 24hr urine collection to see if you also have calciuria. Other tests to look at would be phosphate and alkaline phosphatase (fasting).

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Have you seen an endocrinologist? There are metabolic bone disorders that cause high calcium and osteopenia/osteoporosis, even if you are just a carrier for the disorder. Since your bone density is low, maybe your body is not using calcium properly, in which case, supplementing with other minerals and/or vitamin D might be contraindicated. You could ask for a 24hr urine collection to see if you also have calciuria. Other tests to look at would be phosphate and alkaline phosphatase (fasting).

 

 I have Grave's disease so I see the endocrinologist every six months.  I've done the 24 hour urine, and they've done the ultrasound and tons of blood work.  Right now they want to watch and see, but I'm nervous about it.

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I am taking as much magnesium as my tummy can tolerate now, and I added back the vitamin D yesterday. Only my D levels went down, not the calcium.

I’m not an expert but my understanding is that these minerals and hormones don’t work in isolation. Calcium and magnesium especially have a relationship where if one goes down, the other goes up. Or so I was told. So when my calcium goes up, I up my magnesium. But my calcium has been in the high 9’s and low 10’a for years. I don’t have cancer. My parathyroid has been checked numerous times over the years. But I have significant muscle problems and autoimmune issues. So I can’t say that I have this all figured out.

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I’m not an expert but my understanding is that these minerals and hormones don’t work in isolation. Calcium and magnesium especially have a relationship where if one goes down, the other goes up. Or so I was told. So when my calcium goes up, I up my magnesium. But my calcium has been in the high 9’s and low 10’a for years. I don’t have cancer. My parathyroid has been checked numerous times over the years. But I have significant muscle problems and autoimmune issues. So I can’t say that I have this all figured out.

 

I hear you on this.  It's so exhausting feeling so horrible all of the time, having constantly abnormal blood tests, and no one can figure out why or help you!  I see the endocrinologist, rheumatologist, and cardiologist every 3-4 months, but not much ever gets better.  I'm slowly learning to cope. Right now the therapist at a chronic pain support group I attend is more help than the lot of them.

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My sister did have paraythyroid disease. It was missed for a while, even though she had high calcium, ostopenia (in her 20's at that time), kidney stones, and many symptoms.

 

I know you've been tested. Did you see someone who really knows paraythyroid?

 

PTH can be normal and you still have the disease, and the disease is so rare that most doctors don't know. 

 

This site has great information, including information you could share with a doctor about normal PTH and high calcium in parathyroid disease. http://www.parathyroid.com/diagnosis.htm

 

While I"m sure there are other causes possible, 99% of the time high calcium is going to be from parathyroid disease, so it's likely true in your case as well. 

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