Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Fran, Did they rule out a pheochromocytoma? a --- pagirl1946 <frand.2@...> wrote: > Dr. Grim, > > Yes, Dr. Carey mentioned MEN but since the > octreotide scan was > normal, he just kind of dropped it. I kept asking > him about the > nodule on my left adrenal gland and he told me I > didn't have > hyperaldosteronism. When I told him that everyone > else said I did, > he decided to run his own tests. My aldo was 20 and > renin .9 so he > said I did have hyperaldo. Then he did the saline > suppression test > and said that I didn't have PA, and that my aldo was > secondary since > it was suppressed by saline. He said that the > nodule on the CT was > harmless and that something else was causing my aldo > to be high but > didn't give me any idea what it could be. That was > the last we > discussed aldo. I e-mailed him and reminded him > about the PTH and he > ordered the PTH and calcium levels for the 3rd time. > > > Date PTH Intact Range Calcium Range > > 9/16/05 46.7 6 – 40 10.9 missing > > 12/16/05 42.7 6 - 40 10.5 8.4 – 10.2 > > 5/23/06 29.8 12 - .65 5.2 4.4 – 5.5 > > I can't find the page that showed the calcium from > the first test so > I don't have the range. I have a matrix with all of > my test results > and that is where I got the first calcium level. > The last calcium > result says " calcium, ionized " and the one for the > second test does > not. What is calcium, ionized vs calcium? Why are > the ranges so > different? My calcium has been high for at least 5 > years, all of my > doctors have commented on it and checked my PTH > levels which they > said were normal. My neph tested my calcium in Feb > and it was 10.3, > range 8.5 – 10.2. Can you tell me what all of this > means. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Fran, I've had the parathyroid surgery. For years and years (14 to be exact) I had calcium at the top of the range or slightly over. It was never significantly over the top of the range. Finally a competent arthritis doc did the parathyroid test and figured out why I had been in such pain for so long. Surgery produced a 2 cm parathyroid adenoma. Val -----Original Message-----From: hyperaldosteronism [mailto:hyperaldosteronism ]On Behalf Of pagirl1946 Date PTH Intact Range Calcium Range9/16/05 46.7 6 – 40 10.9 missing12/16/05 42.7 6 - 40 10.5 8.4 – 10.25/23/06 29.8 12 - .65 5.2 4.4 – 5.5 .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 I guess they did. Is there a blood test for pheo? He did a test for plasma metanephrines and noretanephrine and they were both well within the normal range. He tested Chroogranin A and it was high the first time - 72 (range 0 - 51). Then he tested it again and it was 35. When he did the first test, I was off of beta blockers and the second time, I was taking them. He insists that the nodule on the adrenal gland is harmless. I figure that whatever is wrong with me he either isn't interested in it or he doesn't have a clue and that is why I am going to Hopkins to see what they say. Fran > > > Dr. Grim, > > > > Yes, Dr. Carey mentioned MEN but since the > > octreotide scan was > > normal, he just kind of dropped it. I kept asking > > him about the > > nodule on my left adrenal gland and he told me I > > didn't have > > hyperaldosteronism. When I told him that everyone > > else said I did, > > he decided to run his own tests. My aldo was 20 and > > renin .9 so he > > said I did have hyperaldo. Then he did the saline > > suppression test > > and said that I didn't have PA, and that my aldo was > > secondary since > > it was suppressed by saline. He said that the > > nodule on the CT was > > harmless and that something else was causing my aldo > > to be high but > > didn't give me any idea what it could be. That was > > the last we > > discussed aldo. I e-mailed him and reminded him > > about the PTH and he > > ordered the PTH and calcium levels for the 3rd time. > > > > > > Date PTH Intact Range Calcium Range > > > > 9/16/05 46.7 6 – 40 10.9 missing > > > > 12/16/05 42.7 6 - 40 10.5 8.4 – 10.2 > > > > 5/23/06 29.8 12 - .65 5.2 4.4 – 5.5 > > > > I can't find the page that showed the calcium from > > the first test so > > I don't have the range. I have a matrix with all of > > my test results > > and that is where I got the first calcium level. > > The last calcium > > result says " calcium, ionized " and the one for the > > second test does > > not. What is calcium, ionized vs calcium? Why are > > the ranges so > > different? My calcium has been high for at least 5 > > years, all of my > > doctors have commented on it and checked my PTH > > levels which they > > said were normal. My neph tested my calcium in Feb > > and it was 10.3, > > range 8.5 – 10.2. Can you tell me what all of this > > means. > > > > Fran > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 I have read that just because calcium and PTH are sometimes within range, that doesn't mean that you don't have a PTH tumor. I don't have any bone or joint pain and had a bone scan a few years ago. It was one where they put your foot in a machine and it showed that my bone density were in the young adult range (I was about 57 then). My latest test results are so drastically different that I wonder if they didn't get the blood samples mixed up. I do have unexplained pain in my feet which seems to be the skin or tissue and it started with a tingling sensation in my legs. I also have neuropathy in my legs and feet and hands but my fasting glucose levels (and some non- fasting) were never above 100. My A1C was 5-6, I don't have that report. I have read about a clinic in Fla that you can go to and have PTH surgery. They can do minimally invasive radioguided parathyroid surgery. They charge about $800 processing fee to get your records transferred and do the paperwork for insurance. I am considering it but will wait to see what they say at Hopkins. They can do the same surgery there so maybe they know more about parathyroid tumors. I eat a lot of calcium, so maybe that is what is saving my bones. Fran > > Fran, I've had the parathyroid surgery. For years and years (14 to be > exact) I had calcium at the top of the range or slightly over. It was never > significantly over the top of the range. Finally a competent arthritis doc > did the parathyroid test and figured out why I had been in such pain for so > long. Surgery produced a 2 cm parathyroid adenoma. > Val > > -----Original Message----- > From: hyperaldosteronism > [mailto:hyperaldosteronism ]On Behalf Of pagirl1946 > > > > Date PTH Intact Range Calcium Range > > 9/16/05 46.7 6 – 40 10.9 missing > > 12/16/05 42.7 6 - 40 10.5 8.4 – 10.2 > > 5/23/06 29.8 12 - .65 5.2 4.4 – 5.5 > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 So far no one has even recommended that I have the sestimbi scan. Dr Carey kept telling me that he thought I had a parathyroid tumor but all he did was keep repeating PTH and calcium labs until the last one came back with both in the normal range. Like I said the calcium reading is so far out of line with all of the ones I have had over the past 6 years that I think they got the labs mixed up. I will see what they say at Hopkins and if they don't do a scan there, I am thinking about having my primary order one and then contact the guy in Fla if anything shows up. I also can't tolerate heat (thyroid is fine) and that is another symptom of PTH tumor. Should the octreotide scan pick up a PTH tumor? Maybe that is why Dr. Carey didn't order a sestimbi scan. Fran > > I got a lot of information from www.endocrineweb.com. I talked to the > doctor in Florida about the minimally invasive surgery and even sent them my > sestimbi scans. In the end, on the advice of my surgeon, I opted for > traditional surgery. He said he is uncomfortable with not being about to do > a full exploration of the parathyroids. Even with that, he couldn't find > one of mine. I have periodic calcium tests to make sure another parathyroid > hasn't gone wonky. Dr. Grim, is " wonky " a medical term? > > Val > > -----Original Message----- > From: hyperaldosteronism > [mailto:hyperaldosteronism ]On Behalf Of pagirl1946 > > > I have read that just because calcium and PTH are sometimes within > range, that doesn't mean that you don't have a PTH tumor. I don't > have any bone or joint pain and had a bone scan a few years ago. It > was one where they put your foot in a machine and it showed that my > bone density were in the young adult range (I was about 57 then). My > latest test results are so drastically different that I wonder if > they didn't get the blood samples mixed up. I do have unexplained > pain in my feet which seems to be the skin or tissue and it started > with a tingling sensation in my legs. I also have neuropathy in my > legs and feet and hands but my fasting glucose levels (and some non- > fasting) were never above 100. My A1C was 5-6, I don't have that > report. I have read about a clinic in Fla that you can go to and > have PTH surgery. They can do minimally invasive radioguided > parathyroid surgery. They charge about $800 processing fee to get > your records transferred and do the paperwork for insurance. I am > considering it but will wait to see what they say at Hopkins. They > can do the same surgery there so maybe they know more about > parathyroid tumors. I eat a lot of calcium, so maybe that is what is > saving my bones. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Thanks I will check on it. I will try to get them to focus on my sweating problem and the PTH and see what they say about the aldo. Dr Carey says my aldo is secondary but didn't say what could be causing it. Fran > > > In a message dated 6/22/06 10:03:41 AM, frand.2@... writes: > > > > They charge about $800 processing fee to get > > your records transferred and do the paperwork for insurance. I am > > considering it but will wait to see what they say at Hopkins. They > > can do the same surgery there so maybe they know more about > > parathyroid tumors. I eat a lot of calcium, so maybe that is what is > > saving my bones. > > > > HOw much is the surgery. Wait till you have been evaluated at Hopkins. > This is tricky surgery and evalutaion is critical Some do parathyoied vein > sampling for PTH levels. Ask about it at Hopkins if they think you have a > parathyroid problem. > > > > May your pressure be low! > > C.E. Grim, B.S., M.S., M.D. > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 I had plasma, metanephrines done and they were around the middle of the range. That is probably why my Dr kept insisting that I did not have an adrenal tumor I think they tested catacholamines too, but can't find that test result. I don't think I have ever hear of VMA. I am still very confused about the difference between a pheo and an adrenal tumor and an adnoma. Don't they all cause you to overproduce aldosterone? Fran > > > I guess they did. Is there a blood test for pheo? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Dr. Grim, They didn't test my renin during the saline suppression test, just aldo. My last renin/aldo test results were aldo 20; renin.9. I hope you told Dr Carey that I am a very unsatisfied patient. Fran > > > In a message dated 6/23/06 12:06:13 PM, frand.2@... writes: > > > > Thanks I will check on it. I will try to get them to focus on my > > sweating problem and the PTH and see what they say about the aldo. > > Dr Carey says my aldo is secondary but didn't say what could be > > causing it. > > > > Fran > > > > What was your renin. I saw Dr. Carey at the Endo meeting. > > > > May your pressure be low! > > C.E. Grim, B.S., M.S., M.D. > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Is there a blood or urine test fot adrenalin? Fran > > > In a message dated 6/26/06 2:01:52 PM, frand.2@... writes: > > > > Don't they all cause you to overproduce > > aldosterone? > > > > Fran > > > > Pheo makes to much adrenalin -markedly different that aldo. They are made in > entirely different parts of the adreanl gland as well. Rarely both can occur > and one was reported at the Endo Soc last week. > > > > May your pressure be low! > > C.E. Grim, B.S., M.S., M.D. > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > Quote Link to comment Share on other sites More sharing options...
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