Aa
Second time for primary hyperparathyroidism/normal calcium
I had a parathyroidectomy 9/2002 after many years of high PTH/Calcium levels. Tumor/benign removed with a parathyroid gland (found in surgery/chest; not in Sestambi Scan). Levels returned to normal; dx: pseudogout/extreme bone pain for many months. DX: IDC (R) breast cancer 5/06; Grade 2; Est+; SND; chemo/radiation/now tamoxifen.
Primary hyperparathyroidism was evident in May 2007 with levels varying from 383-747 (747 as of 11/27/08), calcium is 9.1. 4 doctors (endocrinologists/parathyroid surgeon) have advised AGAINST surgery, saying there cannot be a tumor without elevated calcium. Have chronic bad cough for months, extreme fatigue (yes chemo/rads can affect), 'fluttery stomach', no depression, no kidney problems/no dialysis ever, no kidney stones, no broken bones.
What is your advice on the continued HIGH PTH levels/normal calcium levels? Is there a tumor? THANK YOU...juli
Primary hyperparathyroidism was evident in May 2007 with levels varying from 383-747 (747 as of 11/27/08), calcium is 9.1. 4 doctors (endocrinologists/parathyroid surgeon) have advised AGAINST surgery, saying there cannot be a tumor without elevated calcium. Have chronic bad cough for months, extreme fatigue (yes chemo/rads can affect), 'fluttery stomach', no depression, no kidney problems/no dialysis ever, no kidney stones, no broken bones.
What is your advice on the continued HIGH PTH levels/normal calcium levels? Is there a tumor? THANK YOU...juli
Yes, that's where I will be referred if NO TUMOR shows in this Sestamibi Scan...we really need to get going on WHAT is going on here. THANK YOU very very kindly for responding to my queries. I figured I'd get a backlash for the Dr. Norman post!
I'd love a PM from you, explaining what YOUR background/experiences have been?
Thank you...juli
I'd love a PM from you, explaining what YOUR background/experiences have been?
Thank you...juli
Glad to see you responded in some of the other threads regarding parathyroid disease. I hope bringing them forward prompts some updates and help.
I also see where you said there is a specialist in NYC that might be able to help you. I hope you can make the trip there to see that person. I've read that's where some well regarded endocrine surgeons on the subject of parathyroid disease practice.
Take care.
I also see where you said there is a specialist in NYC that might be able to help you. I hope you can make the trip there to see that person. I've read that's where some well regarded endocrine surgeons on the subject of parathyroid disease practice.
Take care.
Thank you very much for your input...I have this and where I posted the question elsewhere (med help, ask-a-doctor)...and I don't get email notices that anyone has posted? Yeah, the level can be frightening, but as one who has now gone thru daily migraines since age 17 (age 49 now); invasive ductal carcinoma with 0% prognosis as of present, I just WANNA know what's going on AGAIN with the parathyroid! lol...already having a parathyroidectomy in 2002, makes one wonder if ALL was taken care of at the time, assuming SO, as calcium is NORMAL, but PTH is 878...EXtremely high. NO evidence of kidney disease//surgeon/endocrinologist completely baffled. Sestamibi Scan moved to 1/14/09, tho my last one did not show the grape-sized tumor.
We shall see I guess...but I'm MOVING on this, it's been 2 years too high. THANK YOU very kindly ... what is YOUR story thypatient? (a first name...lol!)...juli
We shall see I guess...but I'm MOVING on this, it's been 2 years too high. THANK YOU very kindly ... what is YOUR story thypatient? (a first name...lol!)...juli
Dang that ice!
In the upper corner, to the right of "This patient support community is for discussions relating to thyroid issues...," there is a key called 'Watch this Discussion.' That will enable you to track the tread.
Your situation sounds frightening, especially as someone who's been through having one tumor removed. Oh, I don't blame you for not wanting to wait any longer; it's too scary a risk.
I so hope someone sees all this, has your same situation and can give a response. In the meantime, you have my both ears and full support.
Keep in touch.
In the upper corner, to the right of "This patient support community is for discussions relating to thyroid issues...," there is a key called 'Watch this Discussion.' That will enable you to track the tread.
Your situation sounds frightening, especially as someone who's been through having one tumor removed. Oh, I don't blame you for not wanting to wait any longer; it's too scary a risk.
I so hope someone sees all this, has your same situation and can give a response. In the meantime, you have my both ears and full support.
Keep in touch.
Hi there! Can you also tell me how to get email updates when someone posts here? I didn't get an update on your post, but would've loved to!
THANK YOU most kindly! We have an ice storm today, so Sestamibi Scan has been postponed til Jan. 14th...endocrinologist and surgeon both believe I have Primary Hyperparathyroidism AGAIN...rare...but can happen...and the level being at 878 is just unreal. WITH normal calcium levels...but a host of 'vague' symptoms (extreme fatigue, no concentration, cough)...also attributed to chemo/radiation though too from cancer treatments. I thank you for your concern! Nah, I wouldn't pay a fee for a doc to answer, as they don't ever have ALL the facts, my case is too complicated actually to get totally into! Nope, no kidney issues...and nope, no secondary hyperparathyroidism has been considered, we believe there indeed IS a tumor with the level just skyrocketing each time we test in past year (NO more waiting, I refuse to 'wait' until calcium gets high)...may have to see a specialist not in my area...would have to travel a bit to get there. ANYBODY with HIGH PTH and normal calcium??? WHAT does it DO to the body?? THAT of course, is my main concern, already having had cancer (and NO cancer is in family), it's in back of the mind, tho I very much DOUBT it's parathyroid cancer, but can't rule it out yet either. Thank you again!
ANY help is appreciated! ~juli
THANK YOU most kindly! We have an ice storm today, so Sestamibi Scan has been postponed til Jan. 14th...endocrinologist and surgeon both believe I have Primary Hyperparathyroidism AGAIN...rare...but can happen...and the level being at 878 is just unreal. WITH normal calcium levels...but a host of 'vague' symptoms (extreme fatigue, no concentration, cough)...also attributed to chemo/radiation though too from cancer treatments. I thank you for your concern! Nah, I wouldn't pay a fee for a doc to answer, as they don't ever have ALL the facts, my case is too complicated actually to get totally into! Nope, no kidney issues...and nope, no secondary hyperparathyroidism has been considered, we believe there indeed IS a tumor with the level just skyrocketing each time we test in past year (NO more waiting, I refuse to 'wait' until calcium gets high)...may have to see a specialist not in my area...would have to travel a bit to get there. ANYBODY with HIGH PTH and normal calcium??? WHAT does it DO to the body?? THAT of course, is my main concern, already having had cancer (and NO cancer is in family), it's in back of the mind, tho I very much DOUBT it's parathyroid cancer, but can't rule it out yet either. Thank you again!
ANY help is appreciated! ~juli
So sorry you're still having problems and for all you've gone through.
Dr. Lupo is on the "Ask the Doctor" forum of this website so you'd have to go there to get his response. I believe there is a fee. Actually, it sounds worth it as he is probably the best one for you to get an answer from.
Your situation is tough but secondary hyperparathyroidism comes to mind. I know you say you don't have kidney issues but have the drs mentioned secondary...?
Anyway, I see you are going for a Sestamibi Scan today. Perhaps you're getting ready for that now so I wish you luck.
Please give an update. There aren't many of us around with these issues but there are enough who could benefit from hearing your experiences.
Take care.
Dr. Lupo is on the "Ask the Doctor" forum of this website so you'd have to go there to get his response. I believe there is a fee. Actually, it sounds worth it as he is probably the best one for you to get an answer from.
Your situation is tough but secondary hyperparathyroidism comes to mind. I know you say you don't have kidney issues but have the drs mentioned secondary...?
Anyway, I see you are going for a Sestamibi Scan today. Perhaps you're getting ready for that now so I wish you luck.
Please give an update. There aren't many of us around with these issues but there are enough who could benefit from hearing your experiences.
Take care.
I had a parathyroidectomy 9/2002 after many years of high PTH/Calcium levels. Tumor/benign removed with a parathyroid gland (found in surgery/chest; not in Sestambi Scan). Levels returned to normal; dx: pseudogout/extreme bone pain for many months. DX: IDC (R) breast cancer 5/06; Grade 2; Est+; SND; chemo/radiation/now tamoxifen.
Primary hyperparathyroidism was evident in May 2007 with levels varying from 383-747 (747 as of 11/27/08), calcium is 9.1. 4 doctors (endocrinologists/parathyroid surgeon) have advised AGAINST surgery, saying there cannot be a tumor without elevated calcium. Have chronic bad cough for months, extreme fatigue (yes chemo/rads can affect), 'fluttery stomach', no depression, no kidney problems/no dialysis ever, no kidney stones, no broken bones.
What is your advice on the continued HIGH PTH levels/normal calcium levels? Is there a tumor? THANK YOU...juli
second request...any thoughts? anybody? PTH as of 12/16/08 is 878!!! Calcium NORMAL at 9.2....Sestamibi Scan tomorrow 12/17/08...surgery OR specialist warranted if NO TUMOR found (again)...thoughts please???
Primary hyperparathyroidism was evident in May 2007 with levels varying from 383-747 (747 as of 11/27/08), calcium is 9.1. 4 doctors (endocrinologists/parathyroid surgeon) have advised AGAINST surgery, saying there cannot be a tumor without elevated calcium. Have chronic bad cough for months, extreme fatigue (yes chemo/rads can affect), 'fluttery stomach', no depression, no kidney problems/no dialysis ever, no kidney stones, no broken bones.
What is your advice on the continued HIGH PTH levels/normal calcium levels? Is there a tumor? THANK YOU...juli
second request...any thoughts? anybody? PTH as of 12/16/08 is 878!!! Calcium NORMAL at 9.2....Sestamibi Scan tomorrow 12/17/08...surgery OR specialist warranted if NO TUMOR found (again)...thoughts please???
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