osteoblast
05-23-2008, 12:52 AM
DB-I did this as a separate thread because I wanted to be sure to get your attention before the sestamibi. I just spoke with the woman I know locally who has hyperpara. She has had elevated ca and elevated pth. When she first had her sestamibi locally-nothing was shown. Then her doc sent her to Seattle to where I go and to the ENT I am seeing, that ENT sent her for another sestamibi at the major med center. Again, nothing showed on that sestamibi. But , then she was sent for a neck u/s with an expert radiologist that the ENT works with and the parathyroids were seen-1 good, 1 bad, 2 questionable. This is the ENT who does minimally invasive parathyroid here in the NW. She has been at this for over 20 yrs. and she works hand in glove with the radiologist. Sooooo-why I am telling you this is that sometimes the sestamibi does not reveal the adenoma. Maybe you can talk with the radiologist about this kind of thing happening and what they can do about it. Let me know how it goes!I am always hoping the best for you:)
Sponsor
DesertBloom
05-24-2008, 04:18 PM
Hi Osteo: I had the sestamibi at the beginning of the week and it was negative. I can't repeat it because of my insurance, so I guess I'm back at square one. In my case my PTH is low and has never been elevated; just the cal, 125 is high and the D 25 low. Because my cal is higher than it has been and I've had some heart probs, the Dr wants me to stop all D. She also wants me to stop the Forteo now, but I'm still thinking about it.
I would be really interested in your friends situation with all this, but it sounds different than mine, because she has the *classic* elevated PTH which goes along with a adenoma.
I'm not feeling very good today, but I'll recover. The weather has been really strange with strong winds and rain, and then driving through that yesterday. They had a tornado close to the hospital I go to, so that was strange. I wonder if weather can really mess with your head. You have to deal with weather like this all the time right? how do you do it?
If you get a chance read my post to Taape about Denosumab, and Forteo... I was really surprised about my Drs remark on Dmab. I had a dxa yesterday so I'll find out what that is in a week or so. I couldn't get the results from them yesterday because my test was included in some study they are doing there.
Take care...
I would be really interested in your friends situation with all this, but it sounds different than mine, because she has the *classic* elevated PTH which goes along with a adenoma.
I'm not feeling very good today, but I'll recover. The weather has been really strange with strong winds and rain, and then driving through that yesterday. They had a tornado close to the hospital I go to, so that was strange. I wonder if weather can really mess with your head. You have to deal with weather like this all the time right? how do you do it?
If you get a chance read my post to Taape about Denosumab, and Forteo... I was really surprised about my Drs remark on Dmab. I had a dxa yesterday so I'll find out what that is in a week or so. I couldn't get the results from them yesterday because my test was included in some study they are doing there.
Take care...
mmee
05-24-2008, 06:41 PM
desertbloom
I am so sorry to hear about your negative sestambi. I was just wondering where is your calcium and pth normally running numbers wise? Do you have any swelling of your neck?
mmee
I am so sorry to hear about your negative sestambi. I was just wondering where is your calcium and pth normally running numbers wise? Do you have any swelling of your neck?
mmee
DesertBloom
05-24-2008, 07:20 PM
Hi mmee: My labs have been all over the place for the last two years, and of course they aren't the classic type, i.e. high cal with high PTH, or low D 25/D125.
Here's the latest:
Ionized Ca: 6.8 ref range (4.8-5.5) at my lab
D 125: 85.6 (25.1-66.1)
D 25: 6 (25-100)
PTH: 9.0 (11.1-79.5)
PTHrP: <0.2 (<1.4)
I'm on Forteo which elevates Ca, and D 125 by 19% and lowers D 25 by 19%. With this said, my ionized Ca was slightly elevated *before* I started the med. I decided to go ahead and take it anyway, and have these levels monitored closely. I'm ending my course on Forteo shortly.
About 3 weeks ago when my Ion Ca was at 6.8, I was having moderately severe chest pains that radiated into my left arm and over my left shoulder. Along with this I would get real dizzy whenever I lied down flat. I have to put many eye drops in every day and lie down to do that, and every time I would lie down the ceiling would be flying around in circles. I also had some dizziness if I would bend over suddenly but it would go away within a couple of seconds. I thought about going to the ER about 6 times, but never did go. I've never had to go to an ER for myself, and I guess I just have a very strong phobia against it. I got a real good lecture from my Cardiologist and PC about this, but the pain has gone away now. I also have the muscle twitching around my mouth/eyes, memory probs, and always exhausted, with horrific bone pain, but only when pressure is applied to that bone.
The Cardio did a 24 hr halter which showed a very large number of PACS, and he said the hypercalcemia explains this and the pain/dizziness. My father died from a heart attack at the age of 56, and his Cardio told him 3 weeks prior that everything was fine. I'm not sure why I just added that info on my Dad, other than it's been on my mind.
The sestamibi didn't show any adenoma, but then my PTH has always been normal or low, never high. I've been tested for many types of cancer, sarcoidosis, granulomas, etc and nothing was found. I do have 2 thyroid nodules, 5-6 breast cysts, and 2 ovarian cysts. The cysts are benign, and the thyroid nodule is too small to biopsy. I'm seeing a mineral metabolism specialist at a Univ Hosp for my Osteoporosis and this Ca prob. She can't figure it out and wants me to see someone else, which I haven't done yet-I guess I'm stupid:D Oh, and no I don't have any neck swelling.
I've been following along with all your battles and hope you find out whats going on, I really feel for you with this type of problem that seems to be impossible to dx or solve.:wave:
Here's the latest:
Ionized Ca: 6.8 ref range (4.8-5.5) at my lab
D 125: 85.6 (25.1-66.1)
D 25: 6 (25-100)
PTH: 9.0 (11.1-79.5)
PTHrP: <0.2 (<1.4)
I'm on Forteo which elevates Ca, and D 125 by 19% and lowers D 25 by 19%. With this said, my ionized Ca was slightly elevated *before* I started the med. I decided to go ahead and take it anyway, and have these levels monitored closely. I'm ending my course on Forteo shortly.
About 3 weeks ago when my Ion Ca was at 6.8, I was having moderately severe chest pains that radiated into my left arm and over my left shoulder. Along with this I would get real dizzy whenever I lied down flat. I have to put many eye drops in every day and lie down to do that, and every time I would lie down the ceiling would be flying around in circles. I also had some dizziness if I would bend over suddenly but it would go away within a couple of seconds. I thought about going to the ER about 6 times, but never did go. I've never had to go to an ER for myself, and I guess I just have a very strong phobia against it. I got a real good lecture from my Cardiologist and PC about this, but the pain has gone away now. I also have the muscle twitching around my mouth/eyes, memory probs, and always exhausted, with horrific bone pain, but only when pressure is applied to that bone.
The Cardio did a 24 hr halter which showed a very large number of PACS, and he said the hypercalcemia explains this and the pain/dizziness. My father died from a heart attack at the age of 56, and his Cardio told him 3 weeks prior that everything was fine. I'm not sure why I just added that info on my Dad, other than it's been on my mind.
The sestamibi didn't show any adenoma, but then my PTH has always been normal or low, never high. I've been tested for many types of cancer, sarcoidosis, granulomas, etc and nothing was found. I do have 2 thyroid nodules, 5-6 breast cysts, and 2 ovarian cysts. The cysts are benign, and the thyroid nodule is too small to biopsy. I'm seeing a mineral metabolism specialist at a Univ Hosp for my Osteoporosis and this Ca prob. She can't figure it out and wants me to see someone else, which I haven't done yet-I guess I'm stupid:D Oh, and no I don't have any neck swelling.
I've been following along with all your battles and hope you find out whats going on, I really feel for you with this type of problem that seems to be impossible to dx or solve.:wave:
mmee
05-24-2008, 08:40 PM
desertbloom,
I am so sorry too that you have not gotten answers yet either. It is so frustrating, and I know for me the heart is the scariest symptom that I have. None of them are fun, but the heart is the scariest for me.
Alot of our symptoms do sound the same. I also have cysts around the body that are being found. I guess they are benign, because no one is looking into them.
Good luck and I hope that they can figure it out for you soon.
mmee
I am so sorry too that you have not gotten answers yet either. It is so frustrating, and I know for me the heart is the scariest symptom that I have. None of them are fun, but the heart is the scariest for me.
Alot of our symptoms do sound the same. I also have cysts around the body that are being found. I guess they are benign, because no one is looking into them.
Good luck and I hope that they can figure it out for you soon.
mmee
osteoblast
05-24-2008, 08:57 PM
DB-You are going through alot. I feel for you! I wonder how much the forteo is complicating everything for you. You really must be almost done. Perhaps just a few weeks left. Maybe best to stop now , to try to get your situation stabilized so readings are no longer influenced by forteo. Your results have been so super that maybe it is time to let it go, and let your system cool out from it. The bone spec. I just saw said you know forteo is a very powerful drug-it wasn't in the sense of what it can do bonewise but powerful in the sense of affecting our system is what she was getting at. Please keep us looped in with this stuff.
If you thought it would help you to talk with my friend about her hyperpara and her sestamibi scans (2) and the ultrasound , I believe she would be more than happy to share with you.Let me know. She has been through the hyper para for some time--too long.
I am wondering what is going on for you, just as you are! Where do you think this is going?
About endless grey yucky damp weather-for sure if effects me and I have no doubt you were effected by the weather when you went to the doc. But, of course, what you have going on will weigh heavy on you like a grey Pacific Northwest sky! Have you found a way, each day, to take some time -a few minutes to just let go of all this stuff and just rest in your body in a place of calm and ease?
If you thought it would help you to talk with my friend about her hyperpara and her sestamibi scans (2) and the ultrasound , I believe she would be more than happy to share with you.Let me know. She has been through the hyper para for some time--too long.
I am wondering what is going on for you, just as you are! Where do you think this is going?
About endless grey yucky damp weather-for sure if effects me and I have no doubt you were effected by the weather when you went to the doc. But, of course, what you have going on will weigh heavy on you like a grey Pacific Northwest sky! Have you found a way, each day, to take some time -a few minutes to just let go of all this stuff and just rest in your body in a place of calm and ease?
tired47
05-27-2008, 08:29 PM
Dear Desert Bloom,
Keep us posted on your news... I am in a similar situation so really want to follow your progress. My labs-
Low PTH -9 then dropped to 6
Normal ionized calcium- 5.0
Normal Serum calcium -9.0
Normal Magnesium serum - 2.1 ( despite taking higher doses to help) with Palps, chest pain
Had high vitamin D ( was 82) now dropped to 50.
Free T 4- .8 ( normal .8-1.5)
Free T 3- 88.0 ( normal 82- 179.)
TSH- 1.4 ( normal .5-4.5)
Sed rate normal -8.0
Coritisol -5.0 ( normal)
Calcium/urine- 22.2 ( normal 2.-17.5)
24 hour calcium/urine - 444.0 ( normal 100.-250.)
Magnesium urine-random- 272 ( normal 22-130)
I had 1/2 thyroid removed in 2006 for large benign nodule. Had ultrasound of Thyroid, showed "lumpy" dr. says thyroid- lots of tiny nodules in remaining 1/2 left.
I too have heart palps, tachycardia, chest pain, ( I have SVT) muscle spasms thru out body. 2 endocrinologists cannot find out why. Or why I am I have high calcium and high magnesium output in urine. Have you been checked for these things? Keep us posted on your news. Thanks and good luck.
Keep us posted on your news... I am in a similar situation so really want to follow your progress. My labs-
Low PTH -9 then dropped to 6
Normal ionized calcium- 5.0
Normal Serum calcium -9.0
Normal Magnesium serum - 2.1 ( despite taking higher doses to help) with Palps, chest pain
Had high vitamin D ( was 82) now dropped to 50.
Free T 4- .8 ( normal .8-1.5)
Free T 3- 88.0 ( normal 82- 179.)
TSH- 1.4 ( normal .5-4.5)
Sed rate normal -8.0
Coritisol -5.0 ( normal)
Calcium/urine- 22.2 ( normal 2.-17.5)
24 hour calcium/urine - 444.0 ( normal 100.-250.)
Magnesium urine-random- 272 ( normal 22-130)
I had 1/2 thyroid removed in 2006 for large benign nodule. Had ultrasound of Thyroid, showed "lumpy" dr. says thyroid- lots of tiny nodules in remaining 1/2 left.
I too have heart palps, tachycardia, chest pain, ( I have SVT) muscle spasms thru out body. 2 endocrinologists cannot find out why. Or why I am I have high calcium and high magnesium output in urine. Have you been checked for these things? Keep us posted on your news. Thanks and good luck.
DesertBloom
05-27-2008, 11:06 PM
Hi tired47: I'll definitely keep you all posted, the problem right now, is that I have no idea where this is going. I have a dx of hypercalcemia (of unknown origin), low D25, high D125, low PTH. If my PTH was high, the Drs would be more willing to look further at my parathyroid. I understand that these sestamibi's can give false negatives, but since my PTH isn't high it's going to be hard to justify further testing on it with my insurance and the Drs, even though both of my Drs will pretty much do whatever I ask of them, they just have to follow the insurance rules for this. So with this negative scan, I can't get the insurance to approve an US or any other test they could do on the parathyroid.
Having the Sestamibi was really a shot in the dark, and the only test they could think of that I haven't had done.
If I decide to go to another Univ Hosp for a 3rd opinion, I may find out something or nothing, so I haven't decided yet. My other problem is getting there. It's a long drive and I can't sit that long because I have many back probs and constant pain.
I have had all the tests you mentioned and they were all normal. If you are consistently losing Ca in your urine, then they usually dx with hypercalciura, which is different than what I have (hypercalcemia). My Drs have done a lot of research on my behalf, but all they've come up with is that I'm an enigma and don't fit into any of the conventional testing criteria.
I really feel for you and hope you find out what's going on. I too have muscle spasms in other areas of my body, but I always attributed them to my many back surgeries/frax and degenerative spinal disorders, not the Ca problem since I've had the back probs since the mid-late 70's.
I do a ton of reading on this, so if I run across anything that might help you or others, I will always pass it along.
I'm curious, is that D score for hydroxy D25 or for dihydroxy D1,25? The D25 is the level they check to see what your D stores are and the 1,25 is the biologically active form. Are you still taking Ca and Vit D? I've been taken off both because they say it's too dangerous *for me* to take either. When I take those supplements my Ca and D 1,25 goes up and they are trying to keep it down. When I was taking 2000 IU's of D3 my hydroxy D 25 continued to go down, so none of this makes any sense and my labs are extremely weird. Normally when you have elevated Ca you also have elevated PTH, so my scores are unexplainable, so they say...
Have your Drs tested your PTHrP levels? This test isn't done very often, but if you have certain types of cancer your PTHrP will go up above the ref range I mentioned. It also sounds like you are having an absorption problem with the Ca and Mag, have they looked into that in any way? There are a lot of different tests you can do for hypercalciura, have you had any of those, provided that *is* your problem. High urinary Ca and high blood Ca are 2 totally different mechanisms, so you need to find out if that's what they think you have (hypercalciura). I'm not sure if your thyroid would play a role here, what does your Dr say, since all your T levels are normal, except for T4 being low/normal?
Good luck and I'll let you know if anything is resolved or if I find any info.:angel::angel:
Having the Sestamibi was really a shot in the dark, and the only test they could think of that I haven't had done.
If I decide to go to another Univ Hosp for a 3rd opinion, I may find out something or nothing, so I haven't decided yet. My other problem is getting there. It's a long drive and I can't sit that long because I have many back probs and constant pain.
I have had all the tests you mentioned and they were all normal. If you are consistently losing Ca in your urine, then they usually dx with hypercalciura, which is different than what I have (hypercalcemia). My Drs have done a lot of research on my behalf, but all they've come up with is that I'm an enigma and don't fit into any of the conventional testing criteria.
I really feel for you and hope you find out what's going on. I too have muscle spasms in other areas of my body, but I always attributed them to my many back surgeries/frax and degenerative spinal disorders, not the Ca problem since I've had the back probs since the mid-late 70's.
I do a ton of reading on this, so if I run across anything that might help you or others, I will always pass it along.
I'm curious, is that D score for hydroxy D25 or for dihydroxy D1,25? The D25 is the level they check to see what your D stores are and the 1,25 is the biologically active form. Are you still taking Ca and Vit D? I've been taken off both because they say it's too dangerous *for me* to take either. When I take those supplements my Ca and D 1,25 goes up and they are trying to keep it down. When I was taking 2000 IU's of D3 my hydroxy D 25 continued to go down, so none of this makes any sense and my labs are extremely weird. Normally when you have elevated Ca you also have elevated PTH, so my scores are unexplainable, so they say...
Have your Drs tested your PTHrP levels? This test isn't done very often, but if you have certain types of cancer your PTHrP will go up above the ref range I mentioned. It also sounds like you are having an absorption problem with the Ca and Mag, have they looked into that in any way? There are a lot of different tests you can do for hypercalciura, have you had any of those, provided that *is* your problem. High urinary Ca and high blood Ca are 2 totally different mechanisms, so you need to find out if that's what they think you have (hypercalciura). I'm not sure if your thyroid would play a role here, what does your Dr say, since all your T levels are normal, except for T4 being low/normal?
Good luck and I'll let you know if anything is resolved or if I find any info.:angel::angel:
tired47
05-28-2008, 10:42 AM
DesertBloom,
Thanks for the info/reply. If you think of ANYTHING, yes please do send it my way. I am so frustrated and tired of all this- almost 18 months of no answers... you sound like you can relate.
My vitamin D - vitamin D 25-OH, D3 - 42
vitamin D-25 OH, D2-8
Vitamin D25 OH, total -50 ( was 82)
Not sure what all this means....The new endo said she thought my vitamin D suppressed my PTH. Now the vitamin D is normal and PTH went up to 15 ( from 6). But last Aug my PTH was 9, vitamin D was low (?30 I think). And I took mega doses of D to bring it up. Had a lot of "bone Pain" at that time. Now just the muscle spasms, twitching, heart palps, tachycardia ( and on Diltia for rapid heartbeat, irregular arrythmia). As fort the high calcium/magnesium output this the 2nd endo to say no idea why. I am seeing a Nephrologist tomorrow at the urging of my cardiologist... but I have no other urinary complaints/symptoms. And before this thyroid surgery I was a WONDERFULLY health person all my life, this has totally turned it upside down.
Another question- does it make a difference when you have your labs drawn- am /pm??? I read it should be done first thing in am- the endos don't seem to care when. My other PTH ( at 6) was done at 9am, last PTH weeks later done at 4pm was 15... anyone have any advice on this one??? Thanks all.
Thanks for the info/reply. If you think of ANYTHING, yes please do send it my way. I am so frustrated and tired of all this- almost 18 months of no answers... you sound like you can relate.
My vitamin D - vitamin D 25-OH, D3 - 42
vitamin D-25 OH, D2-8
Vitamin D25 OH, total -50 ( was 82)
Not sure what all this means....The new endo said she thought my vitamin D suppressed my PTH. Now the vitamin D is normal and PTH went up to 15 ( from 6). But last Aug my PTH was 9, vitamin D was low (?30 I think). And I took mega doses of D to bring it up. Had a lot of "bone Pain" at that time. Now just the muscle spasms, twitching, heart palps, tachycardia ( and on Diltia for rapid heartbeat, irregular arrythmia). As fort the high calcium/magnesium output this the 2nd endo to say no idea why. I am seeing a Nephrologist tomorrow at the urging of my cardiologist... but I have no other urinary complaints/symptoms. And before this thyroid surgery I was a WONDERFULLY health person all my life, this has totally turned it upside down.
Another question- does it make a difference when you have your labs drawn- am /pm??? I read it should be done first thing in am- the endos don't seem to care when. My other PTH ( at 6) was done at 9am, last PTH weeks later done at 4pm was 15... anyone have any advice on this one??? Thanks all.