Re: Newbie scarfing up knowledge!

September 18, 2006

I just came back from my doctor's visit. He said that I get scarier each time test results come back. My 5-HIAA continue to rise as well as my normetaneprhines and metaneprhines. He was in a 35 minute conference call with radiologist and 2 other neuroendocrine specialists and they wanted to do emergency AVS today but will settle for tomorrow. Afterwards, they are immediately starting me on sandostatin and not waiting till I get into the gastro next month. They all agreed that my labile hypertension is out of hand after the 24 hr monitor. More than once (I didn't know this), my pulse dropped to 23 and went as high as 157. My diastolic also hit 148 on more than one occasion. They believe I am pushing on tumor(s) and right now their main concern is that I do have a pheo. They will see what the ratios are and what else is being secreted. Then I will be scheduled for surgery for adrenal removal. He said my aldosterone / renin is through the roof but is probably pushed by the rest of the problems. Now I'm getting scared.

Debi

September 18, 2006

I just talked to Dr. Woltering about carcinoids secreting cats. I also did a query on carcinoid secreting catecholamines and another search on hypertension in carcinoid and there are many articles regarding both of these (30% carcinoid patients have hypertension). I have book-marked several in case you would like to have them or you can google them. I used AOL search.

Also just got a call from Dr. saying my cardiologist will be pulled into this since it is believed I have carcinoid heart as well.

I have also left a message for Dr. Karel Pacak at NIH after I got an email from his nurse.

Debi

September 18, 2006

I hope Dr. Grim will chime in with some advice. I know some on this board had AVS and then had to get it again because it wasn't done correctly the first time.

Val

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

I just came back from my doctor's visit. He said that I get scarier each time test results come back. My 5-HIAA continue to rise as well as my normetaneprhines and metaneprhines. He was in a 35 minute conference call with radiologist and 2 other neuroendocrine specialists and they wanted to do emergency AVS today but will settle for tomorrow. Afterwards, they are immediately starting me on sandostatin and not waiting till I get into the gastro next month. They all agreed that my labile hypertension is out of hand after the 24 hr monitor. More than once (I didn't know this), my pulse dropped to 23 and went as high as 157. My diastolic also hit 148 on more than one occasion. They believe I am pushing on tumor(s) and right now their main concern is that I do have a pheo. They will see what the ratios are and what else is being secreted. Then I will be scheduled for surgery for adrenal removal. He said my aldosterone / renin is through the roof but is probably pushed by the rest of the problems. Now I'm getting scared.

..

September 18, 2006

NIH will be the place to go. Again my understanding is that pure carcinoid tumors secrete only serotonin. If they secrete cats they are a ccmbined turmor of neuroendocrine origin. But prob just a matter of sematics.Once again the only proof that HTN is caused by the carcinoid that I would accept is that the BP normalizes without other meds after the carcinoid has been removed. This has been reported in ACTH secreting carciniodis and in neuroendocine mixed turmors. And that there were good BP data before and after the surgery. Note that at least 25% of all Americans have HTN so almost any other disease would be expected to have 25% of the persons have high blood pressure. Unless the disease independently increases the freq of HTN....or decreases BP. Thus when you remove the carcinoid you would expect those who had essential HTN to not have BP change unless the process lowers BP and then the essential HTN emerges once again after the BP lowering process is removed. On Sep 18, 2006, at 5:45 PM, moonium@... wrote:I just talked to Dr. Woltering about carcinoids secreting cats. I also did a query on carcinoid secreting catecholamines and another search on hypertension in carcinoid and there are many articles regarding both of these (30% carcinoid patients have hypertension). I have book-marked several in case you would like to have them or you can google them. I used AOL search. Also just got a call from Dr. saying my cardiologist will be pulled into this since it is believed I have carcinoid heart as well. I have also left a message for Dr. Karel Pacak at NIH after I got an email from his nurse. Debi=

September 18, 2006

On Sep 18, 2006, at 4:32 PM, Valarie wrote:I just came back from my doctor's visit. He said that I get scarier each time test results come back. My 5-HIAA continue to rise as well as my normetaneprhines and metaneprhines. He was in a 35 minute conference call with radiologist and 2 other neuroendocrine specialists and they wanted to do emergency AVS today but will settle for tomorrow. Afterwards, they are immediately starting me on sandostatin and not waiting till I get into the gastro next month. They all agreed that my labile hypertension is out of hand after the 24 hr monitor. More than once (I didn't know this), my pulse dropped to 23 and went as high as 157. My diastolic also hit 148 on more than one occasion. They believe I am pushing on tumor(s) and right now their main concern is that I do have a pheo. They will see what the ratios are and what else is being secreted. Then I will be scheduled for surgery for adrenal removal. He said my aldosterone / renin is through the roof but is probably pushed by the rest of the problems. Now I'm getting scared.If they think you have a pheo you should be place on phentolamine and then BB to control BP even before AVS as it can trigger a pheo discharge. . I never trust a 24 hr BP reading of 148. They are very prone to errors in readings unless you stay very still each time it takes it. May also are not very good at recording heart rate. But then your Drs will know the machine that was used. Nevertheless it sounds like you are being managed by a good group. Work closely with them as they know all the facts about you and I do not.=

September 19, 2006

Thank you. I was told I am being placed on phentolamine. It sounds like they do know what they're doing which is comforting.

Debi

September 19, 2006

Debi

I am so glad their doing the AVS today. I hope all goes well for you and they

get their samples. I would be scared as well.This is so much for one person to

go through. But you have come a long way so just hang on tightly. This is bound

to get better soon. Adrenals are the most pain in the butt gland I have ever

learned about.Keep us posted as were all concerned for you. ita

I just came back from my doctor's visit. He said that I get scarier each time

test results come back. My 5-HIAA continue to rise as well as my

normetaneprhines and metaneprhines. He was in a 35 minute conference call with

radiologist and 2 other neuroendocrine

specialists and they wanted to do emergency AVS today but will settle for

tomorrow. Afterwards, they are immediately starting me on sandostatin and not

waiting till I get into the gastro next month. They all agreed that my labile

hypertension is out of hand after the 24 hr monitor. More than once (I didn't

know this), my pulse dropped to 23 and went as high as 157. My diastolic also

hit 148 on more than one occasion. They believe I am pushing on tumor(s) and

right now their main concern is that I do have a pheo. They will see what the

ratios are and what else is being secreted. Then I will be scheduled for surgery

for adrenal removal. He said my aldosterone / renin is through the roof but is

probably pushed by the rest of the problems. Now I'm getting scared.

>

September 29, 2006

Hi Debi,

Before I was diagnosed with an aldo problem and put on spiro, I was

on clonidine and labetalol. Clonidine made me very tired and I just

had to take a nap about an hour after taking it. After I had been on

it a while, my bp would suddenly shoot up. A few times when my bp

suddenly shot up very high and my head felt like it was being

squeezed in a vice. A cardiologist told me that the labetalol and

clonidine was a bad combo for me but every other drug she gave me

sent my bp soaring too. Labetalol has is a beta/alpha combo and it

does a lot to help control my bp althought it is still too high. You

may want to try it instead of clonidine and metaprolol and see if it

helps anything. At least it means taking less pills. I take 200 mg

3 x a day.

Fran

>

> Hello everyone! I've been reading as many posts as I can before I

> posted and introduced myself.

>

> I have a long and complicated history that has currently led me to

> your abode. I will try to keep it short for now.

>

> Thyroid cancer in 1973 (died in recovery and was brough back). I

was

> fairly healthy and active until a sudden (or was it) onset of very

> elevated hypertension in '96 discovered by anesthesiologist prior

to

> hysterectomy. I needed to get the OK from a cardiologist before

> they'd do surgery. Thus the beginning of BP meds. Back then I

didn't

> ask questions nor probably didn't even have any. I went on with my

> life, career, happy, good diet and very active.

>

> In 2003 I had a heart attack...distal artery 100% blocked treated

> with meds. Left side of heart wall thickened with mild thickening

of

> a couple of valves. After that I have taken a much more serioius

look

> at myself and done endless research since. In the process, both a

CT

> and MRI confirmed a 1.2 cm nodule on right adrenal. My symptoms

were

> extreme fatigue to lethargic at times, weakness, BP up and down

every

> day 24/7 while on 5 meds to " try " to control it. I have facial and

> neck flushing almost constant now. I've been hospitalized for

> malignant hypertension several times. I've been the route of

> pheochromocytoma, carcinoid syndrome, and now hyperaldosterone. All

> of which I serologically test positive for. I'm a walking time bomb

> right now and getting sicker and sicker by the day. Radiolgist

report

> from the I-131 MIBG I just had shows conversation with my primary

> doctor regarding an active neuroendocrine tumor and that they are

> recommending adrenal venous sampling. My care is greatly directed

> (indirectly) by Dr. Eugene Woltering (neuroendocrine expert in New

> Orleans)of whom I am in contact with regularly. He has told me to

> tell them to do ratios when they do the sampling. I was on a 23

hour

> BP holter monitor a week ago so they could see that my BP is up and

> down with each reading. Extreme ups and downs. I even put new

> batteries in the monitor prior to wearing it (based on experience).

>

> Hyperaldosterone or Conn's is new to me so like pheos and noids,

I've

> been doing my homework. Amazing how all these symptoms overlap each

> other. Fortunately, I have a good doctor who is rapidly becoming

more

> educated in these rare diseases and actively and rapidly pulling it

> all together. I've hired and fired many before him. What a journey!

> I'm sure many of you know exactly what I'm talking about.

>

> The main thing is keeping my BP down out of the danger zones while

> they deal with the more dangerous aspect of what route to take

since

> I have more than one disease. It sounds like the adrenal is the

> priority right now. For BP I take clonidine .3 2x/day supplemented

> with a half of .2 as needed, metoprolol, benicar, triamtrene and

KCl

> 2x day. My K has been low since it was discovered during MI event.

> I've been hospitalized for low K 2 x until I was getting the

correct

> dose. I throw PVCs when I'm too low and recognize it when it

happens.

> I've been on IV K while they were shoving it in me orally. They

don't

> know whether to start me on sandostatin for the carcinoid syndrome

or

> something else at this point. I had to call an ambulance last

Monday

> due to a bout of sudden weakness and exhaustion. I was at work and

> fell asleep in my chair. I got up, drove the 5 minutes to home and

> called an ambulance. By that time, I couldn't lift my arms. I was

in

> there 7 hrs and the doctor didn't know what to do except take

cardiac

> enzymes and run 2 EKGs. He just shook his head and said it was

> probably all related to the neuroendocrine problems(duh). MIBG

scans

> were ordered for the rest of the week. Now, here I am!

>

> Well, enough for now. I am glad your site was recommended to me by

> someone on the cushing's/conn's site. There is so much more but

this

> is the jest for now.

>

> Keep on fighting the fight!

> Debi in Knoxville (go Vols!)

>

September 30, 2006

Debi,

Where is the carcinoid tumor? I have read that adrenal tumors are

carcinoid but have been told by an endo that most are in the

digestive system. Do you get hot and have a lot of sweating with the

flushing?

Fran

>

> I am in Knoxville. I detest licorice! Never been asked but have

read about

> it.

>

> I am not even familiar with the DASH diet. Most of my care has come

from my

> persistent research and presenting my doctors with endless papers

highlighted

> to specifics till I finally got their attention. I have talked

with doctors

> at both NIH and neuroendocrine specs at Kenner in LA who recently

published a

> new book on diagnosing neuroendocrine tumors found online at:

> _http://www.carcinoid.org/medpro/docs/WolteringVinikISIbook1.pdf_

> (http://www.carcinoid.org/medpro/docs/WolteringVinikISIbook1.pdf)

>

> I went to Vanderbilt in Nashville over a year ago and saw

specialist Dr.

> Biagioni (sp) for my hypertension. He was of little help other than

to be

> concerned about my flushing.

>

> As far as the pheo and PA, my norepinephrine and normetanephrines

(plasma

> free) as well as my 24 hr urines have off and on been elevated. My

last

> aldosterone and renin numbers I do not have yet but was told by

radiologist that my

> doctor said aldosterone was high and renin very low. I'll get them

this week

> when I see my doctor. I looked up old numbers from June of 2005

showing

> aldosterone at 9.3 ng/dL and renin <0.5 ng/mL/hr. They didn't

figure the ratio.

> When it's all said and done, I suspect the cats are elevated due to

the adrenal

> adenoma pushing on the medulla of the adrenal when I bend over or

squeeze it

> in any form and that they won't find the pheo at all (fingers

crossed).

> As far as the carcinoid syndrome (very similar symptoms to the

above 2), I

> have the flushing and elevated 5-HIAA 24 hr urines and diarrhea. It

also

> attacks the heart causing thickening.

>

> Can I find the DASH diet online? I am a stickler with diet and what

I should

> and shouldn't eat. I've watched sodium intake for years. I have

little

> appetite these days and what I do eat, I am very careful. I've been

consulting

> with a dietary expert for carcinoid. Hopefully, the diets are

similar. I

> actually feel better when I don't eat at all. lol! I know diet

is very important.

> I also have a PHD friend who has published papers regarding

hypertension /

> malignant hypertension and has been instrumental in lighting fires

with my

> care.

>

> As if the pheo (in my opinion, I say possible even though NIH says

> confirmed) and carcinoid (confirmed) isn't enough to deal

with....sigh. I just keep on

> fighting the fight!

>

> The radiologist here in Knoxville says he can do the venous

sampling. I need

> to ask him how many he has done!

>

> thank you for your help!

> Debi in Knoxville

>

September 30, 2006

Clonidine is thought of - by the many doctors I know - as a quick fix.

But it rebounds, so not good for longterm use. Did spiro help you?

Dave

On Sep 29, 2006, at 7:16 PM, pagirl1946 wrote:

> Hi Debi,

>

> Before I was diagnosed with an aldo problem and put on spiro, I was

> on clonidine and labetalol. Clonidine made me very tired and I just

> had to take a nap about an hour after taking it. After I had been on

> it a while, my bp would suddenly shoot up. A few times when my bp

> suddenly shot up very high and my head felt like it was being

> squeezed in a vice. A cardiologist told me that the labetalol and

> clonidine was a bad combo for me but every other drug she gave me

> sent my bp soaring too. Labetalol has is a beta/alpha combo and it

> does a lot to help control my bp althought it is still too high. You

> may want to try it instead of clonidine and metaprolol and see if it

> helps anything. At least it means taking less pills. I take 200 mg

> 3 x a day.

>

> Fran

October 1, 2006

Dave,

Yes, spiro does help a lot but my bp is still too high sometimes. I

know doctors want it at 120/80 but I wonder how high it can be and

not cause heart damage. My systolic is usually in 150s in the

morning but then goes down to 140s later. The diastolic is nearly

always below 80. I was taking bp meds for and my bp was well

controlled for about 10 years before my bp suddenly started going

crazy. Most bp meds made it go higher and that includes all diuretics

except spiro which I guess isn't really a diuretic.

Fran

>

> > Hi Debi,

> >

> > Before I was diagnosed with an aldo problem and put on spiro, I

was

> > on clonidine and labetalol. Clonidine made me very tired and I

just

> > had to take a nap about an hour after taking it. After I had

been on

> > it a while, my bp would suddenly shoot up. A few times when my bp

> > suddenly shot up very high and my head felt like it was being

> > squeezed in a vice. A cardiologist told me that the labetalol and

> > clonidine was a bad combo for me but every other drug she gave me

> > sent my bp soaring too. Labetalol has is a beta/alpha combo and

it

> > does a lot to help control my bp althought it is still too high.

You

> > may want to try it instead of clonidine and metaprolol and see

if it

> > helps anything. At least it means taking less pills. I take 200

mg

> > 3 x a day.

> >

> > Fran

>

October 1, 2006

I wonder how long too. It looks like I had 140-150 like you for about

6 years while I trusted doctors, and now have LVH with a left ventricle

at about 1/3 larger (more mass) than it's supposed to be. Now I make

trouble and look it up myself. You are lucky to have been given spiro

at all. I wasn't for years, despite low K, arrythmias, and high

aldo/renin ratios. they just kept experimenting with ACE, bb's etc.

With DASH, and 37MG spiro (75 w/o DASH), BP stays at 118/70.

I did use clonidine, and even the catapres patch, but that made me go

up the scale whenever I didn't use it. No more.

Dave

On Oct 1, 2006, at 3:37 PM, pagirl1946 wrote:

> Dave,

> Yes, spiro does help a lot but my bp is still too high sometimes. I

> know doctors want it at 120/80 but I wonder how high it can be and

> not cause heart damage. My systolic is usually in 150s in the

> morning but then goes down to 140s later. The diastolic is nearly

> always below 80. I was taking bp meds for and my bp was well

> controlled for about 10 years before my bp suddenly started going

> crazy. Most bp meds made it go higher and that includes all diuretics

> except spiro which I guess isn't really a diuretic.

>

> Fran

>

> >

> > Clonidine is thought of - by the many doctors I know - as a quick

> fix.

> > But it rebounds, so not good for longterm use. Did spiro help you?

> >

> > Dave

> >

October 1, 2006

Fran,

What is Spiro dosage? I am having 100mg in the morning and 50mg in the

evenings. This seems like an effective combination for me for the

short term.

the other

> >

> > > Hi Debi,

> > >

> > > Before I was diagnosed with an aldo problem and put on spiro, I

> was

> > > on clonidine and labetalol. Clonidine made me very tired and I

> just

> > > had to take a nap about an hour after taking it. After I had

> been on

> > > it a while, my bp would suddenly shoot up. A few times when my bp

> > > suddenly shot up very high and my head felt like it was being

> > > squeezed in a vice. A cardiologist told me that the labetalol and

> > > clonidine was a bad combo for me but every other drug she gave me

> > > sent my bp soaring too. Labetalol has is a beta/alpha combo and

> it

> > > does a lot to help control my bp althought it is still too high.

> You

> > > may want to try it instead of clonidine and metaprolol and see

> if it

> > > helps anything. At least it means taking less pills. I take 200

> mg

> > > 3 x a day.

> > >

> > > Fran

> >

>

October 2, 2006

In a message dated 10/2/06 11:24:57 AM, frand2@... writes:

Yes, spiro does help a lot but my bp is still too high

sometimes. I

> > know doctors want it at 120/80 but I wonder how high it can be

and

The goal is not 120/80 at the present time with drugs. It should however be below 140 in the office and 135 at home. We ignore the diastolic these days as all the predicitive information is in the systolic. In general when the sys is less than 140 the diastolic is almost alway less than 90. Recall that most automatic devices do not do a good job of reading the diastolic.

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.

October 2, 2006

In a message dated 9/30/06 9:51:49 PM, riothamus20@... writes: