Re: Re: If you have limited income not much help for dx

July 17, 2010

This information on Conn's is the standard that you see on many sites.

>

> > FrancisBill,

> >

> > I was reading your email and wanted to tell you I am sorry you have

> > to deal with such dismissive doctoring. I've been there, believe me.

> > After I read the part about you going to the Dartmouth Medical

> > Center, I remembered something I read from thier web-site when I

> > first got Conn's. I've listed the link below so people can see what

> > an incomplete description of Conn's looks like.

> >

> > http://www.dhmc.org/webpage.cfm?site_id=2 & org_id=597 & gsec_id=34389 & sec_id=34389 & item_id=34402

> >

> > When I saw Dartmouth/Hitchcocks Medical Center's description of the

> > symptoms of Conn's, I knew something was wrong. Here's their direct

> > quote:

> >

> > What are the signs of Conn's disease?

> >

> > High blood pressure (hypertension) is often the only symptom of

> > Conn's disease. In some cases, the condition can lower the level of

> > the mineral potassium in a patient's blood. This can lead to muscle

> > weakness, headaches, and the passing of large amounts of urine.

> >

> > Truly this is wrong. While they added the other conditions at the

> > end, at the time I read this I was doubled over in kidney pain, had

> > horrible brain-fog, and migraines. It would have helped knowing

> > these symptoms I was experiencing were legitimate and a result of

> > the adrenal adenoma. I had to learn this by perusing through miles

> > of other sites, then by luck I discovered the NORD and Yahoo group.

> > And for the record, Conn's is a disorder marked by lowered potassium

> > to due an over-production of potassium. DHMC...unbelievable how

> > incomplete their research is on this subject.

> >

> > My point for writing you this--- I agree with everything you are

> > saying, in particular your last sentence. What this disease needs is

> > for the A.M.A. and American Society of Endo's to reinforce the

> > symptom guidelines and to test for it if you are diagnosed with

> > hypertension without reason. A CBC is supposed to be ordered when

> > this happens and if potassium levels are low-Conn's SHOULD BE

> > suspected. As we all know, this is not happening. So I wrote Dr. OZ

> > about this because I am so frustrated and saddened to see people in

> > this site suffering from delayed diagnosis and a general lack of

> > expertise by their endocrinologists. I don't know what will happen,

> > but it sure felt good to put in in writing with the intention to

> > help others become aware of this debilitating disease.

> >

> > Wish you well....Flower Spy

> >

>

-- Carole Aine Langrall " A Garden of Earthly Delights " www.agardenofearthlydelights.net

http://neglectedbeauty.blogspot.com/“My heart found its home long ago in the beauty, mystery, order and disorder of the flowering earth.” ~Lady Bird

July 17, 2010

As I recall I have said you have PA. If you are not doing well on current Rx then ask for spiro as it is the recommended addition for difficult drug resisitant HTN. Because many have early PA is my reading of the data.CE Grim MDOn Jul 17, 2010, at 12:44 PM, Francis Bill SUSPECTED PA wrote:No never tried spiro. Yes the chief is listed on ASH. I am not doing well on meds I am on. Reason why I think I have PA. BP readings that have been as high 199/100 K drop from 4.3 to 3.2 after being started 25 MG of HYDROCHLOROTHIAZIDE fulid retention Dizziness Fatigue Tachycardia shortness of breath brain fog 2 cm tumor on left adrenal gland> > > If you have limited funds then you are limited as to health care > > choices. Due to what ever is wrong with me I am unable to be > > gainfully employed. Because I didn't have enough work credits in the > > ten years before my SX started I couldn't get SSA disability.> >> > Because I am a war time Vietnam Veteran I was able to get a pension > > from the VA. This is a very limited pension plan that is the limit > > income from all sources to a set amount. The current amount is $985 > > a month. Any income below this amount the VA will make up to = the > > $985.> >> > With this amount of income I could get Medicaid If I wanted to > > deplete my savings. Well I can have $1500 in the bank. I do own my > > home and the 1500 would not be enough to pay the taxes. So for now > > no Medicaid.> >> > Since I am a Veteran I use the VA for health care. This does limit > > my being able to try to find help other places.> >> > The VA I use is a teaching medical center. Part of the Dartmouth > > Medical school that is rated one of the best medical schools in the > > US. Almost all of the medical centers in NH and VT are tied to > > Dartmouth.> >> > The main Dartmouth medical center is not far from me. For most > > things they have some of the top Dr in the US.> >> > Since They are a non profit medical center they have to provide care > > to any one that can not pay. I did the paper work and was able to > > get free care there.> >> > Since I have done a lot of research on PA and a CT showed I had 2 cm > > tumor on left adrenal gland. The test the VA did was not done as > > what I was reading said it should be done. First the test was done > > two weeks after surgery. It was done while I was taking 25 MG > > Atenolol 50 MG Triamterene 60 MG Furosemide 20 MG Potassium Chloride.> >> > This test has my RENIN: 1.8 ng/mL/hr with lab range 0.65-5.0 ng/mL/ > > hr and SERUM ALDOS: 16 ng/dL with lab range < or = 28 ng/dL.> >> > Thinking this test wasn't done right I then went to the Dartmouth > > medical center hoping to be tested off the meds. I called an was > > told I would see a both A Tharsan Sivakumar Endocrinology Fellow a > > Dr H Turco Practice in Adrenal Disorders, Osteoporosis, > > Pituitary Disorders, Thyroid Aspiration, Thyroid Disorders, > > Transgender Hormonal Therapy.> >> > I was tested the same day as this visit on the same meds as before. > > with the the results RENIN ACTIVITY .8 no range given and > > ALDOSTERONE-MAYO 5.5 range <=21.> >> > I then learned about the the Am Soc of HTN site I found this Dr > > listed at Dartmouth D. Remillard Section Chief, Nephrology & > > Hypertension. Called and was told I would see Dr YASHASWINI RANGAN > > Fellow Nephrology & Hypertension and Dr D. Remillard.> >> > I did see Dr RANGAN however I didn't see Dr Remillard. Instead I saw > > A Dr M. Kaneko. Was told they would not retest me as there > > was nothing wrong with the way the test was done the first time.> >> > What this tells me is Dartmouth is teaching Dr how not to do the > > test for PA.> >> >> >>

July 17, 2010

But the other sites don't have a real expert backing them up.We are unique in this area.CE Grim MDOn Sat, Jul 17, 2010 at 1:48 PM, Francis Bill SUSPECTED PA <georgewbill> wrote: This information on Conn's is the standard that you see on many sites.> > > FrancisBill,> >> > I was reading your email and wanted to tell you I am sorry you have > > to deal with such dismissive doctoring. I've been there, believe me. > > After I read the part about you going to the Dartmouth Medical > > Center, I remembered something I read from thier web-site when I > > first got Conn's. I've listed the link below so people can see what > > an incomplete description of Conn's looks like.> >> > http://www.dhmc.org/webpage.cfm?site_id=2 & org_id=597 & gsec_id=34389 & sec_id=34389 & item_id=34402> >> > When I saw Dartmouth/Hitchcocks Medical Center's description of the > > symptoms of Conn's, I knew something was wrong. Here's their direct > > quote:> >> > What are the signs of Conn's disease?> >> > High blood pressure (hypertension) is often the only symptom of > > Conn's disease. In some cases, the condition can lower the level of > > the mineral potassium in a patient's blood. This can lead to muscle > > weakness, headaches, and the passing of large amounts of urine.> >> > Truly this is wrong. While they added the other conditions at the > > end, at the time I read this I was doubled over in kidney pain, had > > horrible brain-fog, and migraines. It would have helped knowing > > these symptoms I was experiencing were legitimate and a result of > > the adrenal adenoma. I had to learn this by perusing through miles > > of other sites, then by luck I discovered the NORD and Yahoo group. > > And for the record, Conn's is a disorder marked by lowered potassium > > to due an over-production of potassium. DHMC...unbelievable how > > incomplete their research is on this subject.> >> > My point for writing you this--- I agree with everything you are > > saying, in particular your last sentence. What this disease needs is > > for the A.M.A. and American Society of Endo's to reinforce the > > symptom guidelines and to test for it if you are diagnosed with > > hypertension without reason. A CBC is supposed to be ordered when > > this happens and if potassium levels are low-Conn's SHOULD BE > > suspected. As we all know, this is not happening. So I wrote Dr. OZ > > about this because I am so frustrated and saddened to see people in > > this site suffering from delayed diagnosis and a general lack of > > expertise by their endocrinologists. I don't know what will happen, > > but it sure felt good to put in in writing with the intention to > > help others become aware of this debilitating disease.> >> > Wish you well....Flower Spy> >> >> >> >>-- Carole Aine Langrall"A Garden of Earthly Delights"www.agardenofearthlydelights.nethttp://neglectedbeauty.blogspot.com/“My heart found its home long ago in the beauty, mystery, order and disorder of the flowering earth.” ~Lady Bird

July 17, 2010

Yes, and the problem starts when people with newly diagnosed Conn's see this standard which does not mention the vast array other symptoms. Every Conn's sufferer I have met has a lot more than high blood pressure. I would like to see the long-term affects listed as well.