3 replies to this topic

[houtex54]

My primary care doc had me tested for parathyroid hormone level since my blood calcium level has been consistently a little high.  The parathyroid level test showed high, so I'm being referred to a specialist to determine the best way to move forward. As always I am doing internet research on whatever the doctors say might be wrong with me.  Maybe half the list of symptoms for hyperparathyroidism reads like a list of side effects for TKI meds.  Cardiovascular effects such as high BP or A-fib, brain fog, mood changes (grouchiness), stomach issues like GERD or heartburn, bone pains, headaches, kidney problems and other complaints.  The other thing that struck me was that blood Calcium levels don't have to be much above the minimum abnormal threshold to cause the symptoms.  Interesting article on parathyroid issues explains all. 

Link to article on hyperparathyroidism:  http://www.parathyro...id-symptoms.htm  

 

[kat73]

This alarming article addresses primary hyperparathyroidism.  Secondary hyperparathyroidism can be incident to chronic kidney insufficiency, which happened to me on Gleevec.  It raised my creatinine and BUN levels, and when I was tested, the calcium and parathyroid levels were out of whack, as was Vitamin D.  I was worked up by a nephrologist for all this, and it was found that there was nothing wrong structurally with the kidneys and no protein in the urine; Gleevec had just produced this effect on my lab values.  So, I take Calcitriol and vitamin D and am followed twice a year by the nephrologist.  There are absolutely NO side effects from these two pills, my creatinine level is stable and on the low side of high.  So, I can't blame the symptoms listed in the article on hyperparathyroidism, since the calcium, parathyroid, and vitamin D levels are all kept normal.  I'm glad you're going to a specialist - you'll find out soon enough if it's primary or secondary.

[AllTheseYears]

houtex54:  I just have to weigh in on your situation because I also faced it...right down to the frantic internet search about high calcium levels and the ensuing anxiety.  

 

Background: I have a long history of thyroid diseases and have been taking Gleevec for 15-plus years.  Only two years ago did my calcium level steeply rise. It continued to rise over months.  I had/have no kidney issues, although my labs occasionally showed ups and downs in kidney function. At my regular primary care doctor visit, she wanted to send me immediately to an endocrinologist, thinking the high calcium level meant a screaming parathyroid problem. (More history:  I've been in the care of an endocrinologist many times to treat my ongoing thyroid problems, including a thyroid cancer scare. I do not see one now, however.) 

 

Along with my doctor, I too, feared parathyroid issues; made sense.  However, I took a deep breath and decided to cancel the endocrinologist visit, which actually angered my doctor.  Instead, I stopped taking Vitamin D, which can affect calcium levels.  I also read every label on everything in my pantry, my medicine cabinet and on grocery store and drug store shelves. It was surprising how many products added calcium, sometimes a lot of it, from cereals to milk to vitamin tablets to probiotics.  I then avoided any product with added calcium.  When months later I visited my oncologist, who also monitors calcium, my calcium levels were back in the low-normal range!  They remain so today. 

 

I can't say my tactic will work for you and I dare not give advice.  Just wanted to pass on my experience.  

[Cathy]

Hi I've been on sprycel for 6 years and last month my calcium levels were high so my onc sent me to a endocrinologist, he checked me out ( had bone density, blood test, exam done) and said I have the Hyperparathyroidism. But we are just watching it I go back in 6 months. I'm just in the high level so I'm not too worried. I am curious to see if it goes back down. Who knows what these pills do to our bodies. But so far I just roll with what comes up. I have never been very steady with my numbers and bounce around to just bearly get to MMR. Then I fall out of MMR the past year off and on. I finally have stopped worrying as much as I use to. I doubt I will ever get PCRU but I'm doing okay and have am at peace with it. I have only been MMR after 7 years so PCRU seems doubtful.

 

Hang in there, Stay healthy

 

Cathy