I also have just been diagnosed with Hyperparathyroidism and am scheduled for first visit to a surgeon in New Orleans tomorrow. He was recommended by my primary care doctor but I hope to get at least a second opinion. I am a 67 year old man with lots of the pesky symptoms. An ultrasound scan located an adenoma on my left lower parathyroid. Can anyone suggest a list of questions for the surgeon?

Hi joshg and jackson49,

I have a myriad of symptoms that doctors have not been able to get to the bottom of. Hyperparathyroidism has been mentioned several times but my labs are not always lining up. Anyway, would you mind sharing what symptoms you have had? I feel awful and simply lost in this whole process. Thanks for reading and I wish you both well!

Hello all: I just had my parathyroid surgery at the Norman Parathyroid Center in Tampa this past Monday, Sept. 18. Please see their website - it's an encyclopedia: parathyroid.com
Surgery is the only cure for this disease. Contact them. They will ask you to send them your test results. Use their ap, Calcium-Pro, to enter your test results and send that along too. One of their doctors will contact you to discuss, then you can schedule your surgery. It's an amazing place that has done about 20,000 surgeries. I am so grateful to have found this place as my doctors including endocrinologist haven't a clue. Labs won't always "line up" as once you have this disease your labs are all over the place. PLEASE check out the site - parathyroid.com - it's very comprehensive and yo u'll be glad you did.!

Here is what Ive learned; the only cure for primary hyperparathyroidisms is surgery. The test required for a reputable surgeon is a) urine test, b) Labs showing PTH intake, calcium & other factors.c) ultrasound of the neck region d) sestanbi scan. Diagnosed 11/16 Surgery 10/17

Hi LuvsAspen, did your doctor also order the PTHrP test? Just curious as mine did along with all the others you mentioned, awaiting results.

As maicat said, go to parathyroid.com and study their website. They do the most surgeries in the US and have great info.

I have all the symptoms of primary parathyroidism. High PTH levels, normal to high calcium with 10.4 being my highest. I recently had a sestanbi scan that didn't show anything abnormal in my neck. I feel like crap most days and Im desperate for some relief. I've had neuropathy in both my feet for 3 yrs. No explanation for it. Can anyone help?

Hi..I would love to connect with you and share our experiences with Hyperparathyroidism. Mine has not been fixed yet...Im desperate for help

Slightly elevated calcium lead primary doc to retest plus add in PTH test. Calcium back to hi normal but PTH 178. Everything else in blood normal. Urine 24 hr low calcium. Bone density dramatically improved from 2 years ago. No kidney stones. Never had any symptoms of any kind.

Endo still sent me to surgeon. Ultrasound positive left side; 4d scan positive left side; sestimibi positive left side. Before surgery quick PTH 97; removal of 2 quadrants left side quick PTH 57; exploration of right side removal of 3rd quadrant; pathology of 4th was OK leaving about 1/2 of one quadrant. One week later calcium 9.1 and PTH back to 70. Two months later calcium 9.5 and PTH 101. There is only 1/2 of one quadrant what can elevate the PTH? Calcium still in normal range but up - I eat a calcium rich diet but not excessive. I only have one kidney from birth always very healthy.

Endo wants to do blood again in 8 weeks and if calcium and PTH go up again wants to start all over with urine, scans, etc. Scans of what? Doctor was just in there and just had pathology of the 1/2 quadrant left in.

This is all freaking me out.

Welcome to being sick, and I feel for you all. I was born the fifth ever seen according to Mayo Clinic genetic mutation of the parathyroid, the true disease where there is no cure and you don't want to remove the "mother" gland but try to alter it, stop it from attacking your system as harshly. My calcium levels over level 15 and nearing level 16. Stones did not show up until 29. Mostly when not combating stones I combat trying to breath or have strength. Boiling blood started in my late teens, about 18 of age. Dizziness my entire life. Since I am not curable I have a larger problem now that I have moved away from Rochester MN in making others understand that. So yesterday I went into the hospital to confirm that they really have no clue about parathyroidism in the rare form. That yes "yes" we do pass stones even when the hypercalcemia is in check or even the hormones. Point blank are blood work is as one said "all over" the place and our DNA actually is mutated then our cells, organs, and chemical make up. We do not understand DNA thence reason there really is no cure. I do know this as of recently we are not only dealing with the pesty stones again but my blood is showing the Mchc to low along with other problem in the blood work. My endocrinologist states this is going to require a hematologist as well to study my blood this time around with him. These are not my original team so that actually shocked me as in Oregon it was just my one doctor and same when at Mayo Clinic, the professors did all the studying. So that said the one reason I cam to this group is I also want to exchange exact symptoms and what we figure out. We will all face, the ones genetic and not able to be 100 percent cured various forms of blood disorders caused by altered chemical makeup and DNA. I think it is time that we work together to make it clear how horrible this is so people understand our agony and this illness is taking more serious as it "hides" and then says hello any time it wants!!!

Hi: How was this diagnosed? My 29 year old daughter has been a sick puppy for over a year. Racing heart has put her in the ER multiple times, complaints of constant brain fog, strange burning sensation in her upper body (may be anxiety reaction to heart racing) and excessive thirst/urination, but not diabetic.
Complicating this is active Hashimoto's Thyroiditis antibodies, and high saliva cortisol levels in the early am, late am, and bedtime. Also high DHEA and borderline high White Blood Count.
She also has gut issues - overgrowth of Klebsiella and zero lactobacillus. (Working on that with microcide and good probiotic.) She feels sick almost constantly.
Blood tests over time showing calcium over 10.2 on 3 occasions (highest at 10.7), Albumin also high. Ionized calcium high at 5.38. PTH at 45.
I did just send her the app from the website that calculates for you.
Any advice or understanding of what we're dealing with is appreciated. She's the mom of the 14 month old love of my life and she needs to get well,
Thank you!

Ferritin, Phosphorus, BUN and BUN/Creatinine Ratios are all low. Has done 3 Ferritin IVs in the last month, and this level has come up to normal.

Oh! Also sleep problems....wakes at night with racing heart.

May I ask you a question about Hyperparathyroidism.

I was diagnosed with “plain” hyperthyroidism caused by Graves Disease. Many doctors and supporting information from the internet was stating we had 3 choices, anti-thyroid medications, radioactive Albation or surgery. I chose the medication. Graves Disease is an auto-immune disease. Because of that, I chose meds, changed my diet to A.I.P. And changed the products I use for cleaning and personal care. After 8 months, numbers are within normal range, I feel much better only because I changed my entire way of eating, cleaning and personal product usage has made a big difference. The doctors were ready to albate my thyroid. Most were ready to do that.

My question is, has a doctor ever told you what CAUSED the hyperparathyroidism? And, to treat the cause instead of eliminating the “victim.” (Which for me was the thyroid)

I started off with losing 35 lbs. in a few months, had that crazy fast, erratic heart beat and other “lovely” symptoms of hyperthyroidism. Wasn’t diagnosed for so many years. I just wonder why doctors want to radiate it and cut it out before trying to address the real cause of issue. (I do feel better now that “I” made a conscious choice and chose to do it my way - I will always have Graves Disease - so this is a lifetime process.)

Didn’t mean to bother anyone.

hello everyone!
i just joined this group because i was diagnosed with primary hyperparathyroidism a few weeks ago. it took my PHP 3 years to admit my calcium levels were elevated and in November, I had my first kidney stone, panic attack, and now have been suffering from abdominal pain and urinary issues. I have had all the scans and tests and there my lower right parathyroid is bad so I will be having surgery in 4 weeks, Regarding symptoms, I have been having these abdominal and pelvic pains as well as frequent urination for 6 weeks on and off. has anyone experienced these symtoms as well with their HPT? It sucks so bad and I'm hoping it will diminish after the surgery.
thanks so much
heather