Hi I've been doing some reading on parathyroid and from what I've read you don't have to have high Calcium levels to have a parathyroid problem or tumor, If I were you I would visit the parathyroid.com and then discuss with your Doctor
I'm no expert (just what I would do)
What did you ever find out? I'm in same situation, only my PTH is *878*! My calcium is normal at 9.2. I will NOT go to that parathyroid.com site and try to get info there from Dr. Norman. He says he operates on 100% of all his patients??? COME ON!!!! That is a red flag...but nothing to do with us. WE both MOST likely have primary hyperparathyroidism due to an adenoma (again for me) and need surgery for sure.
I hope you got your issues resolved? Mine are ongoing...all my best...juli
Juli...please visit the Norman Parathyroid Clinic site! It is important to have a correct diagnosis and treatment if you have hyperparathyroid disease. Dr, Norman treats100% of his patients because he only takes patiens with proven blood values for the condition. I am a patient about to have the minimal invasive surgery and start a new and invigorated life. It cost nothing but time to read the info and you will be amazed that your symptoms are shared with thousands of patients. Mary at large in St Petersburg , FL.
Thank you for responding...but I have been on Dr. Norman's site, and I prefer to stay off it. Personal reasons. I appreciate the help, but the parathyroid issue I am having is best served in my local area...possibly the NY City area, as it's perplexing. No, it's very very uncommon to have primary hyperparathyroidism twice, having had a parathyroidectomy in 2002. I have 'vague' symptoms.
What is YOUR story? Again, thank you! ~juli
How was your surgery, and how are you doing? I have been to the parathyroid.com site and saw no information on my own present condition...nobody has any answers.
(High PTH/323; normal calcium 9.3, no vitamin D deficiency, no renal disease, urinealysis normal).
But, how did things go for YOU, that's the main thing.
With my parathyroidectomy in 2002, the tumor was grape-sized and benign, I had NO symptoms whatsoever before surgery (tho waited YEARS with high pth/calcium before I could get away from work for surgery)...developed pseudogout with extreme joint pain for a year after surgery and urticaria. Yes, the tumor needed to be removed.
Actually had to have reconstructive surgery on my scar as it developed a keloid when healing.
Are your levels back to normal yet? I have to take vitamin D supplements, but NO calcium at all...just in my daily diet. How about you? Just curious! THX...juli
I was just wandering through the parathyroid posts (I had P-thyroid surgery in 2006) and was wondering...Since you've had cancer as well, have you been checked for MENS? It is sometimes found when a person has more than 1 PT adenoma. These folks usually have other endocrine problems as well like diabetes, reproductive gland issues, etc...Just a thought..may health be yours...((((((((((((HUGZ))))))))))~MM
THANK you for your response/comments~! I have not been checked for MENS...the only other endocrine issues I have are: hypothyroid (low level of levothyroxine needed) and post-menopause-chemo-induced. I will look that up, and see if it affects JUST the parathyroid hormone...as calcium is normal. THANKS for the heads' up! I didn't have another PT adenoma, just the one removed in 2002...and no docs/surgeons believe I have another (sestamibi scan was negative, but so it was also when I HAD a grape-sized tumor removed). How have YOU been since your parathyroidectomy in 2006? I developed mega-pseudogout in all joints for about a year after my pt-surgery and urticaria. I also became vitamin-D deficient..no deficiency now (take 1000ius a day D-3 supplement).
Wondering how you fared after your surgery, if you don't mind my asking?
I also will look into MENS...see if it applies, but sounds doubtful? ~juli
I'm 32. I had my surgery the day before thanxgiving in 08. My PTH was 284 and my blood calcuim was 9.5. My tumor was very large...2 inches by 1.5 inches. I had my levels ran again just last week and my PTH has begun to increase (84) but my calcuim is normal (8.5) although it was normal the first time. i'm really torn about what to do. i really don't want to go through all that again.
If your PTH levels are high, but your calcium levels are normal, then your parathyroids are working correctly because their function is to maintain proper calcium levels.
This means that something else is causing a hypocalcemic state in your body that your parathyroids are masking by pumping out abnormal levels of PTH.
This is Secondary Hyperparathyroidism because their overactive behavior is caused by a condition external to the thyroids themselves. If you can discover the cause for the excess elimination of Calcium/malabsorption of calcium (such as chronic renal failure, causeed by Diabetes), your parathyroids will probably return to normal functioning
Note: I am not a doctor or affiliated with the medical industry
I am beginning to think my family prctice doc is a joke. Last August 2010 my pth intact was 145.7 and calcium 8.9 she started me on Vitamin D for three months. THen I was off it but taking supplements. Have not been feeling well lately, really tired, low backaches and no energy. I called her and asked her to run my stats again (it has been 6 months). My pth intact now at 179.2 but calcium still holding at 8.9. I know she is going to say just restart Vitamin D but I think something else is wrong. Any ideas? Thanks. Cris
Ask for an ultrasound on the neck, that's what found my tumor and now I'm trying to get the surgery but the blood tests don't seem to correlate. That's what's so frustrating, they know it's there, but won't take it out until the tests show the calcium is high and PTH is high. I finally found a doctor who is going to push for the surgery as he knows I'm having severe depression and bone issues. Get an ultrasound and then when they find the tumor, they may order a MRI.
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