Re: Helen + should I go to Mayo

[Guest guest]

In a message dated 1/5/08 9:08:54 PM, val@... writes:

>

> Helen, it is very disturbing to me to hear all of this. If I couldn't get

> my own reports, I don't know what I'd do. It has been totally due to my

> efforts of reading labs and researching that I feel I'm somewhat close to

> figuring things out.

>

> I saw a new doc Friday, a GP from Harvard, practicing 24 years. I didn't

> expect her to be an expert on PA but I did expect her to have had some

> exposure to it. She'd never heard of it

>

I am sure she attended the Harvard lectures by Gordon the head of

Endo there. She might want to get out her old notes ;-)

> but was very receptive to reading

> Dr. Grim's article, and she was intent on figuring things out for me. I

> told her she's probably seen lots of it but never recognized it. She didn't

> disagree. She's willing to work with me in seeing any endos, getting any

> tests, etc.

>

Excellent. Ask her to join our group and read some files. Suspect she will

recognize them in her practice over the years.

>

> I've been having episodes of paralysis when the morning sweats start.

>

You are likely have low K during these times. Can be aggravated by eating

large amounts of rice or other starches.

> At

> first, I thought I was having a bad dream but am now realizing what is

> happening. It is frightening.

>

> I believe my BP rises because my tinnitus gets terribly nerve-wracking when

> the sweats start and I get terrible anxiety. I've never gotten up at 4:00

> a.m. to check pressure. Generally, the higher my BP is, the worse the

> tinnitus is.

>

> I'm within a hair of calling Mayo in MN for an appointment. The only thing

> holding me back is the specter of yelling " fire " in a packed theatre. What

> I mean is that my BP is varying from ~210/114 clear down to ~130/85. Dr

> Grim, is it possible to have PA with BP that sometimes gets that low?

>

Yes but my first worry would be a pheo esp with the sweating. Trust you

have been tested for this.

Give them a call. Tell them Dr. Grim referred you.

Go to Mayo ASAP.

>

> I'm on diazide, T4, estrogen + periodic progesterone. Nothing else.

> Symptoms:

> 1) Last ARR = 32.5

> 2) Often test low K

> 3) BP often high to very high.

> 4) Significant anxiety, rarely decreased - no emotional reserve for any

> upset

> 5) Daily early morning sweats

> 6) Metabolic syndrome

> 7) CT scan normal three years ago, complete workup at CU med school, no

> diagnosis or resolution

>

> Should I schedule an appointment at Mayo? I'm tired of muddling around with

> the locals, but I don't want to go through the Mayo effort for nothing.

>

> Val

>

>

[Guest guest]

Val,

YOU SAID:

I'm on diazide, T4, estrogen + periodic progesterone. Nothing

else.

> Symptoms:

> 1) Last ARR = 32.5

> 2) Often test low K

> 3) BP often high to very high.

> 4) Significant anxiety, rarely decreased - no emotional reserve

for any

> upset

> 5) Daily early morning sweats

> 6) Metabolic syndrome

> 7) CT scan normal three years ago, complete workup at CU med

school, no

> diagnosis or resolution

1. Are you aware that dyazide (hydrochlorothiazide + triamterene)

causes potassium depletion and diabetes?

Taken from:

http://congestive-heart-failure.emedtv.com/dyazide/dyazide-warnings-

and-precautions.html

" The medication may cause high blood sugar (hyperglycemia) in people

with diabetes or, in some cases, may even cause diabetes in people

without a history of the condition. "

2. Have you tried Aldactone (spironolactone) or Inspra (eplerenone)

instead of dyazide?

Airlinerg

>

> Helen, it is very disturbing to me to hear all of this. If I

couldn't get

> my own reports, I don't know what I'd do. It has been totally due

to my

> efforts of reading labs and researching that I feel I'm somewhat

close to

> figuring things out.

>

> I saw a new doc Friday, a GP from Harvard, practicing 24 years. I

didn't

> expect her to be an expert on PA but I did expect her to have had

some

> exposure to it. She'd never heard of it but was very receptive to

reading

> Dr. Grim's article, and she was intent on figuring things out for

me. I

> told her she's probably seen lots of it but never recognized it.

She didn't

> disagree. She's willing to work with me in seeing any endos,

getting any

> tests, etc.

>

> I've been having episodes of paralysis when the morning sweats

start. At

> first, I thought I was having a bad dream but am now realizing

what is

> happening. It is frightening.

>

> I believe my BP rises because my tinnitus gets terribly nerve-

wracking when

> the sweats start and I get terrible anxiety. I've never gotten up

at 4:00

> a.m. to check pressure. Generally, the higher my BP is, the worse

the

> tinnitus is.

>

> I'm within a hair of calling Mayo in MN for an appointment. The

only thing

> holding me back is the specter of yelling " fire " in a packed

theatre. What

> I mean is that my BP is varying from ~210/114 clear down to

~130/85. Dr

> Grim, is it possible to have PA with BP that sometimes gets that

low?

>

> I'm on diazide, T4, estrogen + periodic progesterone. Nothing

else.

> Symptoms:

> 1) Last ARR = 32.5

> 2) Often test low K

> 3) BP often high to very high.

> 4) Significant anxiety, rarely decreased - no emotional reserve

for any

> upset

> 5) Daily early morning sweats

> 6) Metabolic syndrome

> 7) CT scan normal three years ago, complete workup at CU med

school, no

> diagnosis or resolution

>

> Should I schedule an appointment at Mayo? I'm tired of muddling

around with

> the locals, but I don't want to go through the Mayo effort for

nothing.

>

> Val

>

>

>

[Guest guest]

Oh yes, I'm aware. I thought the diazide was a K-sparing diuretic. I'd

asked the ER doc to change me from HCTZ to a " K-sparing diuretic " when I was

in there a couple of weeks ago. It makes me a bit ill to think that I had

to find the connection of HCTZ to diabetes and low K ON THE INTERNET. I've

been on HCTZ for five years. I'm going to call Mayo in MN tomorrow. I'm

just too exhausted with the haphazard treatment I've gotten around here.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of airlinerg

Val,

1. Are you aware that dyazide (hydrochlorothiazide + triamterene)

causes potassium depletion and diabetes?

Taken from:

http://congestive-heart-failure.emedtv.com/dyazide/dyazide-warnings-and-prec

autions.html

" The medication may cause high blood sugar (hyperglycemia) in people

with diabetes or, in some cases, may even cause diabetes in people

without a history of the condition. "

2. Have you tried Aldactone (spironolactone) or Inspra (eplerenone)

instead of dyazide?

[Guest guest]

Of course I was already in stage 4 and didn't know it, but " K-sparing "

was meaningless for PA. Not as immediate with dangerous arrhythmia as

thiazide-diazide, things like ameloride slowly created K crises.

Duiretics are out for me.

If it were my family member, and if your doc insists, ask why if you are

blocking aldo (aldactone or inspra). Is there some reason apart from

hypertension? It had better be important, and ask for K testing often -

every couple days at first.

Dave

Valarie wrote:

>

> Oh yes, I'm aware. I thought the diazide was a K-sparing diuretic. I'd

> asked the ER doc to change me from HCTZ to a " K-sparing diuretic " when

> I was

> in there a couple of weeks ago. It makes me a bit ill to think that I had

> to find the connection of HCTZ to diabetes and low K ON THE INTERNET. I've

> been on HCTZ for five years. I'm going to call Mayo in MN tomorrow. I'm

> just too exhausted with the haphazard treatment I've gotten around here.

>

> Val

>

> From: hyperaldosteronism

> <mailto:hyperaldosteronism%40>

> [mailto:hyperaldosteronism

> <mailto:hyperaldosteronism%40>] On Behalf Of airlinerg

>

> Val,

>

> 1. Are you aware that dyazide (hydrochlorothiazide + triamterene)

> causes potassium depletion and diabetes?

>

> Taken from:

>

> http://congestive-heart-failure.emedtv.com/dyazide/dyazide-warnings-and-prec

> <http://congestive-heart-failure.emedtv.com/dyazide/dyazide-warnings-and-prec>

> autions.html

>

> " The medication may cause high blood sugar (hyperglycemia) in people

> with diabetes or, in some cases, may even cause diabetes in people

> without a history of the condition. "

>

> 2. Have you tried Aldactone (spironolactone) or Inspra (eplerenone)

> instead of dyazide?

>

>

[Guest guest]

I'm going to call for an appointment at Mayo tomorrow. I don't want to go

on Inspra or spiro until I have an opinion from them. So, I'm not blocking

aldo right now. I'm getting blood tests tomorrow and right now, after two

weeks on diazide and no salt, my symptoms are improving.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Dave

Of course I was already in stage 4 and didn't know it, but " K-sparing "

was meaningless for PA. Not as immediate with dangerous arrhythmia as

thiazide-diazide, things like ameloride slowly created K crises.

Duiretics are out for me.

If it were my family member, and if your doc insists, ask why if you are

blocking aldo (aldactone or inspra). Is there some reason apart from

hypertension? It had better be important, and ask for K testing often -

every couple days at first.

[Guest guest]

In a message dated 1/6/08 11:57:23 PM, val@... writes:

>

> I'm going to call for an appointment at Mayo tomorrow. I don't want to go

> on Inspra or spiro until I have an opinion from them. So, I'm not blocking

> aldo right now. I'm getting blood tests tomorrow and right now, after two

> weeks on diazide and no salt, my symptoms are improving.

>

> Val

>

>

>

Keep us posted.

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.

**************

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Val,

When I went to Mayo in Rochester, I got right in because my BP was

uncontrolled. The gal I spoke with in apointmnets said that with that

diagnosis no doctor referral was necessary and I would get right in.

My appointment was the next week. I saw a nephrologist, Dr. W.

Graves, who was wonderful, very knowledgable re/aldosteronism. In

fact, he was the one who educated me (the way it should be in my

books). Good luck,

kim in MN

[Guest guest]

Kim, I've wondered why you didn't have the option of surgery. You do have

an aldo-producing tumor, don't you? Are you well-controlled on spiro?

I think my next step is a trial of spiro + pheo tests. I was 132/82 at 6

a.m. and 165/87 at 10 a.m. today.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of kimsstay

Val,

When I went to Mayo in Rochester, I got right in because my BP was

uncontrolled. The gal I spoke with in apointmnets said that with that

diagnosis no doctor referral was necessary and I would get right in.

My appointment was the next week. I saw a nephrologist, Dr. W.

Graves, who was wonderful, very knowledgable re/aldosteronism. In

fact, he was the one who educated me (the way it should be in my

books). Good luck,