Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 In a message dated 6/6/07 10:06:51 AM, medgerly@... writes: > > Dr. Grim, > > I took my BP when I woke up with night sweats, and it was higher than > it had been since I started the Spiro (and actually took the BP). It > was 190/107. Also, the sweating is definitely worse in hot weather. > We've had a cool spell here for several days and I've been mercifully > sweat-free unless I exert myself or am in a closed space. So I don't > think my BP is getting too low. I'll try taking it again when I have a > particularly bad spell during the day and see what result I get. > > Also, Fran mentioned carcinoid. Is it common for PA and carcinoid to > co-occur? I AM beginning to wonder if it could explain my GI symptoms, > etc. > > Thanks, > > > > you can search pubmed to find out. Must be very rare. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Dr. Grim, According to the article from the Cleveland Clinic, " The annual incidence is 1.5 per 100,000 population.9 The average age of patients is 50 years, and there is no gender predominance. " I think it is something else that is never detected. I am sure I have one but don't know where. I have no digestive problems except for the ocassional acid reflux which is a symtom of a PTH tumor. Everything I see on it says most of them are found in the digestve tract and that seems to be the only place doctors look for them. When I had the octreotide scan, the endo had them take a lot of pics of my neck but nothing showed up. I have read that " foregut " tumors produce anithistimines. In another group for people with hyperPTH, someone reported that his constant runny nose went away after surgery. Someone else in the group reported something similar. I have a constant stuffy nose and am also sneezing a lot sometimes 15+ times a day. I started breaking out in hives when my BP first went up 18 years ago. I found a lab test from around that time which showed my CA level at 10.2 which was within range for that lab but now all the lab ranges I see show the top range as 10.2. My latest CA result was 10.7. The article talks about alcohol causing the flush and I have that and a even 1/3 glass of wine will cause it and also raise my BP. I haven't drank alcohol for years and have several bottles of wine rotting in my wine rack. I also recall reading that pheos are or can be carcinoid tumors. Do pheos cause sweating? Is the sweating something that comes along later in the disease? I still haven't heard anything about the scan I had last Wed but had the film library send me a copy of the films on a CD. If I am looking at the pics right, the tumor/adenoma is about 4.5 cm. I have had my catecholamines checked several times and as late as Mar 29 and they are always normal. I believe the heavy sweating is depleting my sodium/chloride levels because many times they have been low along with K and magnesium. I think that is what is causing my high aldo. In order to test it, I always have to go off of spiro and am given diuretics instead. 200 mg spiro a day helps my BP but does not control it. Diuretics (HCTZ, lasix and maxzide) all make my BP go very high. When I did the saline suppression test, my aldo was 19 and was suppressed to 5 after the saline infusion. I think the only time my aldo is high is when I am on diuretics, but I have to take them in order to be tested because doctors think they lower BP. Fran > > > In a message dated 6/6/07 10:06:51 AM, medgerly@... writes: > > > > > > Dr. Grim, > > > > I took my BP when I woke up with night sweats, and it was higher than > > it had been since I started the Spiro (and actually took the BP). It > > was 190/107. Also, the sweating is definitely worse in hot weather. > > We've had a cool spell here for several days and I've been mercifully > > sweat-free unless I exert myself or am in a closed space. So I don't > > think my BP is getting too low. I'll try taking it again when I have a > > particularly bad spell during the day and see what result I get. > > > > Also, Fran mentioned carcinoid. Is it common for PA and carcinoid to > > co-occur? I AM beginning to wonder if it could explain my GI symptoms, > > etc. > > > > Thanks, > > > > > > > > > > you can search pubmed to find out. Must be very rare. > > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > > > ************************************** > See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Debi, I just got the info from all my tests in the mail today and the report of the sestamibi scan says there is no evidence of a parathyriod adenoma. The sonogram done 3 weeks ago says there is a nodule 1.4 x .6 x .7cm nodules on my right thyroid lobe and a .7 x .4. s5 cm nodule behind the bottom of the left thyroid lobe. What all that probably means is I have a lumpy thyroid and there is nothing wrong. It would be nice if the surgeon's office would call and tell me something but I expect I'll get a letter in the mail in another week or so. The PTH level was the highest I have seen yet, 61.2, range 12-65. Calcium was 9.8 within range. Vit D is normal. I guess what I was looking at on the films was the thyroid but why it was labeled parathyroid tumor spect I don't know. They also sent me someone elses medical record; so much for HIPPA. I do have nodules on my left adrenal gland, but am told they are harmless since aldo is suppressed by saline. I may go to Hopkins again but I wasn't impressed by the endo I saw there last year. He said I probably had an adrenal tumor but it wasn't hurting my BP (BP was 141/70s) and ignored me when I told him it often goes up to 160s. He also said I probably had a PTH tumor but it wasn't doing any harm to my bones. He had no bone scan results to look at. He said to come back in 6 months - I didn't. I looked at the carcinoid.org web site so may go to the dr listed there. I am just getting tired of it all. Every endo I go to has a different opinion. I had one insist that the flushing/sweating was caused by menopause. She insisted that if I had a carcinoid tumor, the octreoscan would have found it. If I have carcinoid cancer, I have had it for 8 years because that is when the hives started. One thing that terrifies me about more tests is that I have to go off the beta blocker for a week first and I can't take antihistamines for a couple of days. Nothing else controls my bp and most drugs make it go higher. I read that a calcium/magnesium imbalance can cause your body to produce histamines. I cut back on my magnesium a few weeks ago because I couldn't get the ones I used to take and had hives really bad for about a week before I figured it out and went back up on the magnesium dose then they stopped. I have about decided that whatever is wrong with me, I just have to live with. Fran > > > In a message dated 6/7/2007 12:30:40 P.M. Eastern Daylight Time, > frand2@... writes: > > I also recall reading that pheos are or > can be carcinoid tumors. > > > No, pheos and carcinoids are not the same, although an adenoma on the > adrenal can cause extreme symptoms very similar to a pheo (bp spikes, sweats). > > Also, I might add that a large part of noids have negative octreotides, CTs, > MIBG, MRIs, etc. Just because an octreoscan is negative doesn't rule it out. > It only detects tumors with 2 of the 5 carcinoid receptors. Also, these > scans (unless using some of the modern MRCTs) will not pick up tumors less than > one centimeter. Unfortunately, a carcinoid primary can be smaller and wreaking > havoc with metastasis and not be seen on a scan. The primary can literally > seed out hundreds of sand-size tumors. This is why it is important to track > down a primary using a process of elimination. Midgut, Foregut, hindgut can > secrete different markers and can be narrowed down to an area by what they > secrete. Often a pill cam (a tiny camera you swallow) is used to detect noids in > the small intestine. Since carcinoid is an extremely slow growing cancer, many > live with it for many years before they find it. I know quite a few with the > chemical 100% biomarkers but the primary has not been found " yet " . > > I have known of no other noids who have had PA or Conn's other than myself. > I've also had thyroid cancer so it is highly suspected of a variant of MENS in > my case. > > Debi > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Dr. Grim, I have had my CA/PTH tested all over the state of VA and no one has plotted anything. From the letter I got from the surgeon at UVA, it appears he just looked at the last one done there and not the previous two that showed high calcium. It does no good to show docs old tests because they just look at the latest. Doctors need to spend more time with patients, 15 min is not enough. They never look back at the previous page in the chart. That is how one doc didn't catch the fact that I had gained 10 lbs in 10 days. I know they teach all this stuff in med school but I also know that most docs forgot half of what they learned. AS for the doc at Hopkins, yes he said my bp was OK but I saw him about 2 hours after I took my bp meds sometimes it is OK but it shoots up suddenly. I tried to tell him that but he ignored me. He had a med student with him, so to me he just taught the med student to ignore what the patient says. When I saw the surgeon at UVA, my systolic was 179 and I couldn't see the bottom number but it usually doesn't go above 85. As for reminding UVA about the HIPPA violation, I have learned that you have to be very nice to medical staff or they will get even. You should watch the movie " The Doctor " . It was made some time ago and is about a surgeon who gets throat cancer and suddenly has to deal with all the medical BS like the rest of us. Fran > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 No family history of thyroid problems. Fran > > > > > > > > > In a message dated 6/7/2007 12:30:40 P.M. Eastern Daylight Time, > > > frand2@ writes: > > > > > > I also recall reading that pheos are or > > > can be carcinoid tumors. > > > > > > > > > No, pheos and carcinoids are not the same, although an adenoma on > > the > > > adrenal can cause extreme symptoms very similar to a pheo (bp > > spikes, sweats). > > > > > > Also, I might add that a large part of noids have negative > > octreotides, CTs, > > > MIBG, MRIs, etc. Just because an octreoscan is negative doesn't > > rule it out. > > > It only detects tumors with 2 of the 5 carcinoid receptors. Also, > > these > > > scans (unless using some of the modern MRCTs) will not pick up > > tumors less than > > > one centimeter. Unfortunately, a carcinoid primary can be smaller > > and wreaking > > > havoc with metastasis and not be seen on a scan. The primary can > > literally > > > seed out hundreds of sand-size tumors. This is why it is important > > to track > > > down a primary using a process of elimination. Midgut, Foregut, > > hindgut can > > > secrete different markers and can be narrowed down to an area by > > what they > > > secrete. Often a pill cam (a tiny camera you swallow) is used to > > detect noids in > > > the small intestine. Since carcinoid is an extremely slow growing > > cancer, many > > > live with it for many years before they find it. I know quite a > > few with the > > > chemical 100% biomarkers but the primary has not been > > found " yet " . > > > > > > I have known of no other noids who have had PA or Conn's other than > > myself. > > > I've also had thyroid cancer so it is highly suspected of a variant > > of MENS in > > > my case. > > > > > > Debi > > > > > > > > > > > > ************************************** See what's free at > > http://www.aol.com. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Excellent. Must have missed this one. Will get and read and need to write an editorial about beeturia. On Mar 6, 2008, at 10:23 AM, Ellen wrote: > So, I suppose you've heard of the Journal " Hypertension. " That's where > the study is proclaiming beet juice's power to lower HBP. Here's the > info about where to find it: > http://www.peoplespharmacy.com/archives/herb_home_remedy_qa/ > beat_high_blood_pressure_with_beet_juice.php > > Ellen > > May your pressure be low! CE Grim BS, MS, MD High Blood Pressure Consulting Specializing in Difficult to Manage High Blood Pressure Consult the following at for details bloodpressureline hyperaldosteronism Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Maybe we should report your n of 1 trial to the journal as you did it based on their publication??? Would make a nice report I think. Urine did not turn red as I recall. What brand of beet juice did you use? On Mar 6, 2008, at 10:23 AM, Ellen wrote: > So, I suppose you've heard of the Journal " Hypertension. " That's where > the study is proclaiming beet juice's power to lower HBP. Here's the > info about where to find it: > http://www.peoplespharmacy.com/archives/herb_home_remedy_qa/ > beat_high_blood_pressure_with_beet_juice.php > > Ellen > > May your pressure be low! CE Grim BS, MS, MD High Blood Pressure Consulting Specializing in Difficult to Manage High Blood Pressure Consult the following at for details bloodpressureline hyperaldosteronism Quote Link to comment Share on other sites More sharing options...
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