Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 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 Wonky: It is now. 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 23, 2006 Report Share Posted June 23, 2006 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 23, 2006 Report Share Posted June 23, 2006 In a message dated 6/22/06 10:50:46 AM, frand.2@... writes: 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 He has a lot of experience and good judgement. A second opinion is always good in difficult cases. 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 23, 2006 Report Share Posted June 23, 2006 Fran, I don't know about a blood test, I just know when they ruled it out of me they did a 24 hour urine for VMA, catacholamines and metanephrines. a --- pagirl1946 <frand.2@...> wrote: > 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 26, 2006 Report Share Posted June 26, 2006 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 26, 2006 Report Share Posted June 26, 2006 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...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 It was just a thought. Pheo could explain your sweating and some are associated with MEN. a --- pagirl1946 <frand.2@...> wrote: > 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 28, 2006 Report Share Posted June 28, 2006 In a message dated 6/27/06 6:38:21 PM, frand.2@... writes: 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 DONT NEED TO TEST THE RENIN AFTER SALINE UNLESS ONE IS TRYING TO DIAGNOSE SECONDARY ALDO. I did speak with him and told him you were getting a second opinion as you were not satisfied. 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 July 4, 2006 Report Share Posted July 4, 2006 In a message dated 6/29/06 5:36:13 PM, frand.2@... writes: Is there a blood or urine test fot adrenalin? Fran both. Talk to your health care team. 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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