Trouble getting offical diagnosis

[Guest guest]

In a message dated 9/9/06 7:47:22 PM, j_foster@... writes:

different note, I have had my adrenals scanned a few times and

no tumour has presented itself. Its at this point that I am usually

dismissed by specialists even though the aldosterone/ dismissed by s

high and I am symptomatic of Conn's.

AS you will note in my article it is likely that most Conn's done have abn scans early on.

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.

[Guest guest]

In a message dated 9/9/06 7:47:22 PM, j_foster@... writes:

I am also concerned as my weight has doubled in the past ten years.

Can Conn's cause this type of swelling and weight gain? I think

something is secreting cortisol as well as my body just used to

regulate itself until the last ten years when I have become really

unwell.

Many are heavy but have not seem a lot of wt gain. Come Cushing's can have picture of Conn's.

Medicine is not always easy.

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.

[Guest guest]

In a message dated 9/9/06 7:47:22 PM, j_foster@... writes:

My last endo said my results don't make

sense.

Can you send us your results?

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.

[Guest guest]

Indeed has " gone through it " - a similar ringer to that which

many of us know. , I hope you have Dr Grim's article on evolution

of PA in FILES. It can change recalcitrant clinical attitudes better

and faster than most things I have seen.

I went through a similar runaround for almost 7 years, and after much

confusion, I met Dr. Grim, took his article on the evolution of PA

( " primary aldosteronism " ) to a great cardiologist who remains informed.

C Carlson MD, FACC, FACP gave me aldactone, backed me off the

ineffective antihypertensives the others had been pushing, and put me

on low-sodium version of the DASH diet, plus a cardio-pulmonary rehab

exercise program involving slowly increasing workouts. I remain on low

doses of ACEI and BB to protect my heart.

Immediately, my BP dropped to 120/80 average (4 x daily measurements

kept in Carlson's BP log sheet), and over the ensuing 8 months, my

weight is dropping, muscle-mass increasing, sleep and mood improving,

headaches reducing, and most importantly, the LVH (left ventricular

hypertrophe) caused by years of my improperly treated hypertension

shrank down to 1/3 of its formerly dangerous doppler-echo mass. My

risk factor for sudden cardiac death (arrythmia that can kill rapidly)

is way down, and I feel great.

Diagnoses are tough because so many physicians think hyperaldosteronism

is rare - the exotic province of some mysterious specialist, but when

asked to specify such specialist, many can't make a referral - and the

few who know it is a mineralcorticoid imbalance of the angiotensin

system (in the most practical clinical sense) have misgivings because

even they usually went for years not recognizing the condition.

" Water-cooler gossip " around the teaching hospitals influences many

interns and residents of this incorrect assumption, I discovered.

Although hypokalemia (low potassium and PVC's) seems to be the first

index of suspicion, most doctors seem to ignore it clinically -

especially in the ER. This is hard to understand, except that ER

practitioners want to send you to your " own doctor to follow up. "

There are few ER's who can test for aldosterone, renin or ACTH. And

the 24-hour urine helps confirm serum and plasma bloodwork. You can't

do that in an ER. Some few gave me K-Dur, a band-aid at best. It is

hard for a doctor to say " I let hundreds of these cases go untreated or

treated them improperly before I found out. "

I also suffered because many clinicians knew aldactone was specific,

but bypassed even trying it because of fear of " side effects. " My own

attitude is those are less troublesome than premature death. Grim has

suggested a two-week trial for the hypokalemic. If, as in my case,

their blood pressure normalizes quickly, further study of the hormones,

scans of the adrenals and so on can be conducted. Meanwhile, at least

the patient does not have to continue overworking their bodies

(especially that left ventricle) with high blood pressure. The most

insidious medical myth I have encountered is the widespread one that

high blood pressure isn't an emergency. It may not be if you know how

long you've had it. If not, it can mean approaching stroke or other

problem.

In addition, there are many variants of hyperalsdosteronism in the

literature. Some writers call the condition " Conn's syndrome " for

identification, but when the clinical rubber hits the road, that term

is usually reserved for adenoma-caused overproduction of aldosterone.

Like many, I had one adrenal gland removed only to remain hyperaldo.

Some get an HTN cure - the lucky ones. The protocall for surgery is

still controversial. " Primary aldosteronsim " (PA) usually means " we

don't know what causes the overproduction, " and " I don't know " is

another tough thing for malpractice policy-carrying physicians to say.

Dr. Grim will correct me if I err, but it seems that while researchers

have known about this for decades, and they teach it a " rule out cause "

in medical school, that clinical medicine is just learning about this,

and that we are lucky to have controls for hypertension at all. A

good selection of these drugs have only been in conventional medicine

since the 40's. Unfortunately, those of us who suffer from hyperaldo

suffer more than just the effects of high blood pressure.

If we persist to insist, though, it should be possible to do well, I

believe.

Best wishes,

Dave

On Sep 9, 2006, at 6:00 PM, kimsstay wrote:

> Oh - you have been thru the ringer...If you are anywhere at all

> close to MN or AZ i would suggest going to the Mayo and getting

> checked out there, if your insurance (or pocket book) will cover it

> that is. Or just keep trying to find good internist or endo who will

> listen to you and keep an open mind about your condition...good luck!!

>

> _

[Guest guest]

Dr. Grim, you are a love! That's the second time you've told me I have early primary aldo. I believe it! It is going to take my own knowledge to get proper treatment because, as we've seen so many times, finding the right care is hit-or-miss.

When the univ hospital endo could not tell me the aldo/renin ratio they use for diagnosis, I knew I had a winner. I know there are some gems out there; they are just hard to find. When my daughter-in-law was at her wits end and even the pain clinic told her she was nuts, I told her to go to Mayo in Phoenix. She was 25 years old and walking with a cane. The Mayo doc made her put away her notes and just talk. Within a short time, the doc told her she likely had Celiac. Tests confirmed it. DDIL had carried those notes all over for three years, trying to get someone to listen to her.

I have printed your article but I do everything I can to avoid going to the doctor. But when I do, I will take a copy of it.

Val

-----Original Message-----From: hyperaldosteronism [mailto:hyperaldosteronism ]On Behalf Of lowerbp2@...

My aldo repeatedly tested high and renin repeatedly tested low. When I, at Dr. Grim's urging, asked her what ratio they use to diagnose hyperaldosteronism, she said, "Well, its less than your level but I don't think you have it." I insisted on a CT scan but it showed nothing. End of story. As you can see from my article on the evolution of PA this is the beginning of the story. You have early Primary Aldo. Take my article to every Dr. you see and ask them to read it.You will help yourself and all their future patients.

..

[Guest guest]

In a message dated 9/22/06 8:39:43 AM, wendy4ben@... writes:

I take inderal for this, though

>it tends to wear off by nighttime and each morning I wake up feeling

>like I have been hit by a train (I take 40 mg each morning).

Inderal should be taken at least 2 x a day for BP. it wears off as you note.

>

>I had misdiagnosed migraines for 25 years. Because they

>were 'atypical' and had a vertigo component as I seem to have damage

>to my right ear, they were misdiagnosed as panic attacks,menieres

>and all types of things. None of the medication I was given for

>these attacks ever worked until I went on inderal and as well as

>lowering my blood pressure it lessened the severity and frequency of

>the migraines (Praise the Lord because they are dreadful migraines).

Inderal can be a miracle drug for migraine.

>

>Often I have bouts of gastric problems and vomiting. This actually

>happened last night. I was very ill and had eaten some corn ships

>and am wondering if this could be related to the Conn's and fluid

>imbalance.

>

>On a different note, I have had my adrenals scanned a few times and

>no tumour has presented itself. Its at this point that I am usually

>dismissed by specialists even though the aldosterone/renin ratio is

>high and I am symptomatic of Conn's.

Review my article and take it to your Dr. There are many causes of Conn's Most dont show up on adrenal scan.

>What else can cause Conn's - tumours in other area's ? Someone

>mentioned a genetic cause - what is that called as I don't recognise

>the abbreviation which was used.

>

>I look like I have cushings too. I have had one elevated 24 hour

>cortisol test which was dismissed because a subsequent 24 hour

>cortisol test was abnormally low - I have no idea what is going on

>there.

>

>Its so nice to have a community of other people who have to wrestle

>with this illness.

>

>I remember the first time a gp mentioned that I might have Conn's. I

>had quite a heated argument with him as I was telling him that there

>was something wrong with me and I sensed that my electrolytes were

>labile. He said I suppose you might have Conn's but didn't order any

>tests for it and I ended up changing gps.

>

>Eventually an endocrinologist tested aldosterone/renin as I

>explained to him that during routine surgery for a nasal polyp my

>blood pressure had been spiking.

>

>I now have a request for an acth stimulation test as my cortisol was

>measured when it was low. My last endo said my results don't make

>sense. I would have thought he would focus on the Conn's and work

>out where the problem was coming from but because there is no

>obvious tumour on the adrenal glands he is not willing to do venous

>sampling as it is invasive. I respect his reasoning but it is not

>helping me.

I would not do AVS if BP and K can be controlled with aldo blockers either.

>

>I am also concerned as my has doubled in the past ten years.

>Can Conn's cause this type of swelling and weight gain? I think

>something is secreting cortisol as well as my body just used to

>regulate itself until the last ten years when I have become really

>unwell.

Many are overweight and there is some evidence that fatty acids may stimulate aldo.

>

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.

[Guest guest]

hi julie..... yes conns can make ur weight go up . i went up 2 a size 24 i

was a size 14 .. doctors told me i had panic attacks for 15 years it was

hell i was sick most night mandy

hyperaldosteronism

>hyperaldosteronism

>Subject: Trouble getting offical diagnosis

>Date: Sun, 10 Sep 2006 00:35:28 -0000

>

>I know I have Conn's - so do all of the specialists I have seen, but

>for some reason they are very careful with the wording they choose

>to use. They (nephrologist and endocrinologists) say 'it seems that

>you have Conn's), but they won't say 'you have Conn's'. I can only

>work part-time because of my health but I wonder how difficult it is

>going to be to have this documented.

>I am not sure where my results are at the moment but my

>aldosterone/renin ratio is very high. Without medication my blood

>pressure is at time around 190/120. I take inderal for this, though

>it tends to wear off by nighttime and each morning I wake up feeling

>like I have been hit by a train (I take 40 mg each morning).

>

>I had misdiagnosed migraines for 25 years. Because they

>were 'atypical' and had a vertigo component as I seem to have damage

>to my right ear, they were misdiagnosed as panic attacks,menieres

>and all types of things. None of the medication I was given for

>these attacks ever worked until I went on inderal and as well as

>lowering my blood pressure it lessened the severity and frequency of

>the migraines (Praise the Lord because they are dreadful migraines).

>

>Often I have bouts of gastric problems and vomiting. This actually

>happened last night. I was very ill and had eaten some corn ships

>and am wondering if this could be related to the Conn's and fluid

>imbalance.

>

>On a different note, I have had my adrenals scanned a few times and

>no tumour has presented itself. Its at this point that I am usually

>dismissed by specialists even though the aldosterone/renin ratio is

>high and I am symptomatic of Conn's.

>What else can cause Conn's - tumours in other area's ? Someone

>mentioned a genetic cause - what is that called as I don't recognise

>the abbreviation which was used.

>

>I look like I have cushings too. I have had one elevated 24 hour

>cortisol test which was dismissed because a subsequent 24 hour

>cortisol test was abnormally low - I have no idea what is going on

>there.

>

>Its so nice to have a community of other people who have to wrestle

>with this illness.

>

>I remember the first time a gp mentioned that I might have Conn's. I

>had quite a heated argument with him as I was telling him that there

>was something wrong with me and I sensed that my electrolytes were

>labile. He said I suppose you might have Conn's but didn't order any

>tests for it and I ended up changing gps.

>

>Eventually an endocrinologist tested aldosterone/renin as I

>explained to him that during routine surgery for a nasal polyp my

>blood pressure had been spiking.

>

>I now have a request for an acth stimulation test as my cortisol was

>measured when it was low. My last endo said my results don't make

>sense. I would have thought he would focus on the Conn's and work

>out where the problem was coming from but because there is no

>obvious tumour on the adrenal glands he is not willing to do venous

>sampling as it is invasive. I respect his reasoning but it is not

>helping me.

>

>I am also concerned as my has doubled in the past ten years.

>Can Conn's cause this type of swelling and weight gain? I think

>something is secreting cortisol as well as my body just used to

>regulate itself until the last ten years when I have become really

>unwell.

>

>

>

>

>

>

>

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[Guest guest]

Do you mean like fish oil or fish?

Val

-----Original Message-----From: hyperaldosteronism [mailto:hyperaldosteronism ]On Behalf Of lowerbp2@...

>I am also concerned as my has doubled in the past ten years.>Can Conn's cause this type of swelling and weight gain? I think>something is secreting cortisol as well as my body just used to>regulate itself until the last ten years when I have become really>unwell.Many are overweight and there is some evidence that fatty acids may stimulate aldo.

..

[Guest guest]

If that is true then should we be avoiding fatty acids altogether, or

just make sure its balanced diet and not overdone?

Valarie wrote on 9/22/2006 1:06 PM:

Do you mean like fish oil or fish?

Val

-----Original Message-----

From: hyperaldosteronism

[mailto:hyperaldosteronism ]On Behalf Of lowerbp2aol

>I am

also concerned as my has doubled in the past ten years.

>Can Conn's cause this type of swelling and weight gain? I think

>something is secreting cortisol as well as my body just used to

>regulate itself until the last ten years when I have become really

>unwell.

Many are overweight and there is some evidence that fatty acids may

stimulate aldo.

..

[Guest guest]

In a message dated 9/24/06 6:08:52 AM, rjf_untrustedsignups@... writes:

Many are overweight and there is some evidence that fatty acids may stimulate aldo.

The correlation is with blood FA not dietsry.

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.