Hyperparathyroidism - Please Help Me Understand

[Madisons_Mommy]

Hi there!  I'm a tad bit confused and I was hoping to seek out some answers.  Forgive me if this gets too long.  I'm a 30 female with an almost 2 year history of elevated calcium levels (I didn't realize this had been going on for almost 2 years until my labs were pulled up this morning).  The lowest has been 10.6 and the highest, 11.3.  My mother in law having 3 of her parathyroids removed prompted me to talk to my doc about my high Ca+ levels because of my extreme tiredness.  That's when he ran yet another Ca+ blood test (11.2 in June) and then a PTH test (92.5, also in June).  With these results, I was sent for a thyroid/parathryoid ultrasound and 24 hour urine test.  My ultrasound came back with a possible nodule on the right side of the thyroid.  The 24 hour urine came back extremely high - 503 with high being 300.  I then was sent to an ENT specialist and had an sestamibi scan done.  I went to our small town hospital and had the test done - possible minor parathyroid adenoma on the left side.  At that point, my ENT doc wasn't comfortable operating on me without a good localization scan.  He said that he doesn't have the "toys", ie, inter-operative sestamibi scan and the ability to test PTH levels immediately during surgery.  I had another sestamibi scan done at his medical center - NEGATIVE.  He also retested my Ca+ level (10.7) and PTH level (it was up to 145).  

My question is this: what's up with the differentiating scans??  How could they be so opposite of each other, and, if I have a parathyroid adenoma, why am I getting a negative sestamibi scan?  The lab workups are clearly indicative of primary hyperparathyroidism.  I'm so confused!

I'm being sent to another doc in Oklahoma City who has the toys to do an inter-operative sestamibi.  That's another thing...my doc now thinks it might be in the chest...but, the scan covered my chest as well.  

Another thing I worry about is high calcium being related to cancer.  I'm a very light smoker (on and off for 8 years having quite twice over the span of 8 months each and am in the process of quitting again).  Could this be lung cancer?  I don't have any warning signs.  Can somebody help me figure this out???  Thanks so much!

[juli0212]

I just wanted to point out that my PTH levels now are 878 as of 11/08, calcium normal at 9.2.   I already HAD a paratrhyoidectomy in 2002, removal of a benign tumor NOT FOUND on a Sestamibi Scan...high calcium levels, MUCH lower PTH levels than now.
NO ONE knows what is going on, especially with 'normal calcium'...I already went thru breast cancer in 2006, still no prognosis on that (after 2 surgeries, partial mastectomy, EST+, sentinel node disease, chemo,radiation, tamoxifen, chemo-induced menopause, as I was young, 46).   NOW the PTH just keeps climbing, and all docs/surgeons are 'stumped'..will get a sestamibi scan in January, but feel with this high of a level, SOMEthing is going on, and no one knows what, of course, CANCER is on my mind, and I have symptoms that someone with HIGH CALCIUM would have, stomach groans, NO kidney problems ever, sleeplessless/but extremely fatigued, take sleep meds, total loss of concentration (BUT docs attribute ALL of this to chemo, which was finished 12/06)....so yes, frustrating!    POSSIBLITY:  this was NOT resolved during parathyroidectomy in 2002...tho calcium returned to normal, extreme bone/joint pain for MONTHS after surgery, was a wreck, scar needed reconstructive surgery, healed tight.
ANYBODY else have HIGH PTH, normal calcium???   THANKS.juli

[Wolf341]

To give an additional source on the diagnosis of primary hyperparathyroidism:
"The diagnosis of PHPT is confirmed by demonstrating persistent hypercalcemia (or high-normal serum calcium levels) in the presence of inappropriately normal or elevated PTH concentrations. Normally, PTH levels are suppressed in the presence of increasing serum calcium levels."

"Parathyroid imaging has no role in the diagnosis of PHPT, but ultrasonography or sestamibi scanning (or both) of the parathyroid glands should be used for operative planning."
AACE/AAES Position Statement
"Endoctrine Practice" Vol 11, No. 1  2005, p. 50, 51

A chart on p. 51 shows that at the top of the range for ionized calcium the intact PTH level should be at the bottom of its range, around 12-15. A level in the 80's or 90's points to hyperparathyroidism.

[Madisons_Mommy]

Thank you!  I frequent parathyroid.com often.  It's the only site that made me feel like I wasn't completely dreaming up how I feel and made me feel so much better about the situation.  I sit back sometimes, especially when I'm having a good day and wonder if I'm just "making up" some of my symptoms just to justify the lab results.  Then, it hits me...I'm sheerly exhausted, much more than a 30 year old should be, and I KNOW something's not right.  Not only that, but, although I do have anxiety issued (can you tell?  lol) I have NEVER had a panic attack and I've had 2...while on anxiety medication.  I know there's something not right.

Anyway, my ENT doc is thinking there may be a bad parathryoid hanging out in my chest.  I guess we won't know until they operate.  

Here's another question.  For the neck exploration and if they have to go into my chest, how bad are the scars?

[medicmommy]

Hello! The sestamibi scans are only as good as the person operating the machine...if you get someone who isn't very practiced at doing them, you can get a bad scan...Many people who have them get negative scans, but have obvious hyperparathyroidism...The thing to be most concerned about now is your surgeon...Make sure you get someone who has done a ton of these! (at least 100!) It does sound like your endo knows his stuff, but the parathyroids can hide all the way down into your chest (the one I had with the tumor had tunneled under my collarbone!) and can be hard to find without the proper "toys" as your Dr so fondly put it...and you don't want your surgeon groping around, potentially damaging your vocal cord nerves...
Get the tests done you need to rule out your cancer concerns...More than likely, the parathyroid one won't be (98% aren't cancerous)...Good luck...have you looked up Parathyroid.com yet? It addresses the Sestamibi inconsistencies also...Take care!                            ~MM

[Madisons_Mommy]

Thank you, as always for your advice and sharing your experience.  I did tell the ENT doc that I do smoke and have voiced my concerns about cancer to more than one doc and they really don't think that's what it is.  Especially since my blood calcium has always hovered in a tight range between 10.6 & 11.3.  My primary doc said that if it were cancer, those numbers would have steadily increased, so, I guess I should listen to them huh?  ha ha!  I'll of course let the new doctor I'll see on the 25th know my concerns as well.  

Thank you again!  I'm so glad to have found this forum!

[Thypatient]

I'm glad you posted a separate thread.  I'm so sorry your issues are getting so confusing.  It's such a tricky disease though.  

"My question is this: what's up with the differentiating scans??  How could they be so opposite of each other, and, if I have a parathyroid adenoma, why am I getting a negative sestamibi scan?"

~ I wish I could answer that.  But all I can say is, again, that my scan was negative and yet I had a tumor.  What I have read backs up my own situation - that 'Negative' does not always mean there's nothing there.

I know from the other thread you have fears about cancer and I can understand you feeling that way.  But please try not to jump ahead.  Have you discussed that aspect with the dr?  I know they were able, from my bloodwork, to determine everything was primary and not from a secondary issue.  I remember being told that even before having any imaging done.

Hopefully the dr at this next facility will have more information on what's going on.

We're here for you.  Good luck.