Re: After years of misdiagnosis...

[Guest guest]

Have you had thyroid tests?

Val

-----Original Message-----From: hyperaldosteronism [mailto:hyperaldosteronism ]On Behalf Of shahallThe problem is I feel like crap about 90% of the time, so tired I can barely make it through a day at work.

[Guest guest]

That's awful, a. I got that headache from Inspra too, but they

suspected the other meds interacting. Inspra is pretty new. Are you

DASHing? That reduced my need for meds by 75%.

DR Grim?

Dave

On Apr 11, 2006, at 6:41 PM, shahall wrote:

> I finally got the result of my AVS today - Primary Hyperaldosteronism

> secondary to bilateral adrenal hyperfunction. I have bilateral

> adrenal adenomas (showed up on MRI, CT was neg.) and was told that

> surgery is not recommended since the problem is bilateral, just

> continue medical treatment for the hypertension. The problem is I

> feel like crap about 90% of the time, so tired I can barely make it

> through a day at work. I'm presently on Atacand 32 mg, HCT 25 mg,

> Toprol XL 50 mg and Spiro 100 mg twice a day. I tried Inspra but had

> a raging headache every day I took it. BP currently running 130-

> 140's / 60-70's. Am I destined to live the rest of my life feeling

> this way?

>

> a

>

[Guest guest]

Hi a:

Yap, that sounds like me. I think the spiro does it. It makes you

sleepy and at times you feel like(or at least I feel like) I have

brain fogs, very tired and unmotivated! My short memory is down the

drain and I really have to think about what I need to do next or

remember what I did a day ago. My thyroid test has been normal. Good

news was I know it was spironolactone. When I got off of it to do an

AVS for 8 weeks I started feeling " me " again and it was so

wonderful. But alas the BP just kept climbing so with no surgery,

spiro appears to be it until there is a cure for all. Inspra was one

of the worse medications for me with headaches, flushing, and a

bunch of other problems it was causing.

I didn't know that an MRI can show an adenoma better than a CT scan!

As far as I have learned you could not be having any adenomas(as in

my case) and still your glands produce too much aldosterone!

Dr. Grim, in this case can removal of one gland(the more producing

one) be helpful in dropping the bp a bit?

Thanks,

Farah

>

> I finally got the result of my AVS today - Primary

Hyperaldosteronism

> secondary to bilateral adrenal hyperfunction. I have bilateral

> adrenal adenomas (showed up on MRI, CT was neg.) and was told that

> surgery is not recommended since the problem is bilateral, just

> continue medical treatment for the hypertension. The problem is I

> feel like crap about 90% of the time, so tired I can barely make

it

> through a day at work. I'm presently on Atacand 32 mg, HCT 25 mg,

> Toprol XL 50 mg and Spiro 100 mg twice a day. I tried Inspra but

had

> a raging headache every day I took it. BP currently running 130-

> 140's / 60-70's. Am I destined to live the rest of my life

feeling

> this way?

>

> a

>

[Guest guest]

You should be DASHing. Assume your Endo et al has talked to your about the key role of dietary salt in this type of HTN.

How long have you been on spiro? with this and DASH you may be able to reduce many of your other meds and will feel better The goal would be to keep the home BP at less than 135/85 on the average and with you feeling well.

Have you been checked for GRA? What is you FH of HTN, CVS and low K.

Give us as much history as you can in your journey to the diagnosis. See our files for some other

"Stories" to use as a model.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin

[Guest guest]

In a message dated 4/11/06 8:43:46 PM, shahall@... writes:

I finally got the result of my AVS today - Primary Hyperaldosteronism

secondary to bilateral adrenal hyperfunction.  I have bilateral

adrenal adenomas (showed up on MRI, CT was neg.) and was told that

surgery is not recommended since the problem is bilateral, just

continue medical treatment for the hypertension.  The problem is I

feel like crap about 90% of the time, so tired I can barely make it

through a day at work.  I'm presently on Atacand 32 mg, HCT 25 mg,

Toprol XL 50 mg and Spiro 100 mg twice a day.  I tried Inspra but had

a raging headache every day I took it.  BP currently running 130-

140's / 60-70's.  Am I destined to live the rest of my life feeling

this way? 

a

[Guest guest]

I think I must have had every test known to man. Thyroid tests all

normal.

a

>

> Have you had thyroid tests?

>

> Val

>

> -----Original Message-----

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ]On Behalf Of shahall

>

>

> The problem is I

> feel like crap about 90% of the time, so tired I can barely make it

> through a day at work.

>

[Guest guest]

Hi Dave,

I've been on a 1500 cal ADA for the past year because I also

developed type II diabetes. I'm very glad to have found this group

because I have a lot of questions and the Endo I'm going to doesn't

seem to have a lot of answers.

a

>

> That's awful, a. I got that headache from Inspra too, but they

> suspected the other meds interacting. Inspra is pretty new. Are

you

> DASHing? That reduced my need for meds by 75%.

>

> DR Grim?

>

> Dave

[Guest guest]

I was actually tested for cushings initially before my diagnosis of

PA. But the endo who was ordering the test told me that she is only

doing it just to rule out everything as I was within my weight range

for my size. My test was negative too.

If you read Dr. Grim's thesis on diagnosis of PA you will notice

that at second or third stage of PA if not controlled you can end up

with diabetes type II. I suggest that you print the files and read

them over and over. They will help you and your doctor in the long

run. I have found out that being educated is the only way to

question your doctors and not blindly follow. I have since been told

by many of my doctors that I know more about PA than they have every

heard studied and I owe it all to Dr. Grim.

Farah

> >

> > > Hi a:

> > > Yap, that sounds like me. I think the spiro does it.

> > > It makes you

> > > sleepy and at times you feel like(or at least I feel

> > > like) I have

> > > brain fogs, very tired and unmotivated! My short

> > > memory is down the

> > > drain and I really have to think about what I need

> > > to do next or

> > > remember what I did a day ago. My thyroid test has

> > > been normal. Good

> > > news was I know it was spironolactone. When I got

> > > off of it to do an

> > > AVS for 8 weeks I started feeling " me " again and it

> > > was so

> > > wonderful. But alas the BP just kept climbing so

> > > with no surgery,

> > > spiro appears to be it until there is a cure for

> > > all. Inspra was one

> > > of the worse medications for me with headaches,

> > > flushing, and a

> > > bunch of other problems it was causing.

> > > I didn't know that an MRI can show an adenoma better

> > > than a CT scan!

> > > As far as I have learned you could not be having any

> > > adenomas(as in

> > > my case) and still your glands produce too much

> > > aldosterone!

> > > Dr. Grim, in this case can removal of one gland(the

> > > more producing

> > > one) be helpful in dropping the bp a bit?

>

> > > 

> > > Thanks,

> > > Farah

> >

> >

> >

> >

> >

[Guest guest]

Dave,

I've watched my salt and sodium content for years but have been

reading up on the Dash diet and will give it a try. I'm having a

pretty good day today and was able to go 20 minutes on the treadmill

but most days I don't have the stamina for it. A year ago I was

doing 45 minutes 5-6 days a week and the only thing I can figure out

that's changed is my meds. I have a much more profound fatigue and

a lot more back pain than I had a year ago. I also have LVH due to

the years of poorly controlled HTN, hopefully it's reversible. EF

is good though, >70%. I'm sorry to hear that your surgery didn't

work. I was really sort of hoping that mine would be a unilateral

problem, they'd take one adrenal out and I'd be cured and feel well

but no dice. From what you're saying it sounds like that frequently

doesn't work anyway. Glad to hear you're doing better.

a

>

> I am sorry you feel poorly at work. Are you DASHing? Exercizing

on a

> regular schedule?

>

> Three adenomas were found in my right adrenal in the post-op path

> report. Only one was imaged before surgery in either scan. The

other

> two were " diffuse, hyperplasic. " So, although none were seen on

the

> left gland scans either, I might have been bilaterally

hyperplasic,

> because the right adrenalectomy did not affect my HTN or rising

> aldosterone level at all, which continues to slowly creep up the

scale.

> It was not until a few years later that one of the UCSF doctors

told

> me the surgery, even with the most searching tests beforehand, was

a

> 50/50 proposition at best.

>

> He (Quan Duh, MD) said " we don't know where the excess aldosterone

> comes from in almost half of the cases - embryonic tissues of the

> adrenal type seem to grow almost anywhere in tiny amounts

throughout

> the body, and that is one are for future research. " Knowledge is

> limited.

>

> The most astonishing thing is that none of the physicians involved

with

> the diagnosis or treatment of hyperalodosteronism ever suggested

spiro

> or inspra to me, and insisted on treating me as " essential

> hypertension " afterward. The wrong medicines did nothing to

control my

> BP, and created interactive and " side effect " problems. Finally,

a new

> DR. group, with Dr. Grim's input, gave me spiro, and my BP sank to

> 118/70 thenceforward.

>

> My LVH, a result of too-long uncontrolled HTN, is shrinking back,

my BP

> in the safe range, and rehab exercise in place.

>

> Less astonishing is that none of them - even today - knows

anything

> about DASH low sodium diet. The entire University of California

> medical school and its connected hospital campuses and training

centers

> SAY they know nothing about it.

>

> But reducing my salt intake to 1500 MG per day stopped my dizzy

spells,

> and allowed normal sleep and urinary habits. Later, it allowed me

to

> use only 32MG/day of spironolactone, where 125MG/day was required

to

> keep BP down without DASHing. I can move dietary sodium up to

> 2500MG/day, and my BP goes up 10-15 points. Clearly, I am " salt

> sensitive. "

>

> I say " less astonishing " because it has long been my impression

that

> there is a fortress mentality between advocates of conventional

and

> so-called " alternative " medicines, so anything to do with diet is

taboo

> in most of standard practice. Not knowing about PA seems simple

> negligence.

>

> Dave