Re: Newbie scarfing up knowledge!

[Guest guest]

As you can see from our others here you have a real story to tell. Can you give us the numbers that suggested the Pheo and the PA. Having both is very rare--I have never seen one- or at least recognized one.

The person in New Orleans I know the best is Dr. Re at the Ochsner Clinic, but cant tell if your are in New Orleans or Knoxville. If in Knoxville I can also recommend someone in Nashville.

Anyway get on the DASH diet starting tonight and then give us all the other details.

I assume your many consultants have already recommended the DASH, however. One way to tell you have been seen by a real HTN expert is if the asked if you ate licorice every day.

Hope to get more details. Please read my article and take it to all your Drs. You might also want to send it to your old Drs. to protect other pts like you they are missing.

In a message dated 9/17/06 7:30:05 AM, moonium@... writes:

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) probably all

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' someone on the cushing's/conn'<wbr>s s

is the jest for now.

Keep on fighting the fight!

Debi in Knoxville (go Vols!)

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]

What was the exact DX on the thyroid cancer. Some are familial and I assume if you had that type your Dr. asked that all you family also be tested. Some are also assocaited with pheos and you should have been told this if you had that type.

In a message dated 9/17/06 7:30:05 AM, moonium@... writes:

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) probably all

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' someone on the cushing's/conn'<wbr>s s

is the jest for now.

Keep on fighting the fight!

Debi in Knoxville (go Vols!)

P

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]

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

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

[Guest guest]

Thyroid: The histology and pathology reports are being re-reviewed. They are very detailed and enough that my doctor believes I can get a sound diagnosis as to what kind of thyroid cancer I had. There was a discrepancy between 2 very well known pathologists at the time. One was from the Mayo and the other from Washington Univ. hospital. Medullary is most often associated with pheochromocytomas. Mine shows a mix of papillary, follicular and an unknown cancer of an A-typical type. I only recently got the report from the hospital who did the surgery in WV. I am a complicated mess!

Debi

[Guest guest]

I found the DASH diet on this site. It is very similar to the one the

dietician had me on after my heart attack. I've adhered to the low

sodium (very low sodium) for 3 years now. In my case, the only

difference in low sodium I see is in fluid retention vs. no fluid

retention. My BP has a mind of it's own. It will be low one minute and

soar to over 200/130 in a heart beat and be back down the next as

proven by both endless lengthly hospital visits, BP 24 hr monitors and

my own constant monitoring. If I eat any sodium at all, I swell up like

a balloon. I mean any at all including the little bit you find in

frozen veggies. I have a high sodium intolerance. I cook with natural

herbs which I grow myself. Most of my veggies, I grow myself or I try

to buy local fresh produce. I even watch my water content of sodium. I

suppose I'm just not in the norm of most people. I've just had to be so

very active in my health when nobody else was there. I've learned to

listen to my body and find out why and how to my questions. That is the

scientist in me.

Debi

[Guest guest]

I don't mean to come across as arrogant or a know it all so I apologize if I do. There has been so much going on with me that I leave out little details. Realize that I am not taking sando or anything that suppresses hormones secreting rampant in my system at this point. Sometimes I feel like I'm going nuts and my mind doesn't always work correct so forgive me if I leave out in between the line details. Just ask me and I'll tell you. Please don't attack me.

I also have renal insufficiency and I have chronic liver disease. If I get any sodium at all I swell up. That means through my process of elimination over the past 3 years I have learned where a lot of the hidden sodium lies. I recognize what it does to me so I avoid it in every way I can. Rarely does this happen anymore. Realize that the majority of my diagnosis have come in the past 1.5 years of constant battling. The pheo definitive came last week when I was accepted for admittance to NIH after my last set of catachols were very elevated. In the past when they were elevated, my endocrinologist and prior doctor said "wait 6 months and see if it grows". Levels were checked along with my last test of 5-HIAA which were elevated more than the previous 1 month ago.

I was hospitalized a year ago to have my gallbladder out. It took them 5 days to get my BP down after being in malignant hypertensive state prior to the surgery. I was throwing up green bile. I was alpha and beta blocked well. Finally, they removed the gallbladder. They tried to do pheo workup at the time but told me results would be inacurate due to all the interfering meds in me. While in the hospital, I fired my nephrologist and primary doctor and put my care in the hospitalist who changed my BP meds. He said the adrenal gland needed to come out and referred me to my current primary doctor. For a few months the meds kept the BP up and down and a lower level. No severe spikes until about 3 months ago. My clonidine was raised 2x during that time. Testing was hard to knock down results due to I could not be off my BP meds even for 4 hrs. My doctor said I'd stroke out. That went for nuclear imaging as well. He kept on trying to get the results even on the meds believing it would happen and it did. Then came the question was my carcinoid secreting catacholamines and the focus by my doctor was on the carcinoid. My heart was becoming more enlarged (echocardiogram) and it was believed the serotonin was attacking my heart . Then in the last round of testing, my catechols, 5-HIAA and aldosterone / renin ratio were all elevated. My doctor didn't know what to do next. That is when the decision was made to do the adrenal venous sampling. I got an email from Dr. Woltering this morning saying yes, have the venous sampling. I understand this. I have high levels of various hormones secreting over everything and I have not had much control over it. I was started on xanax last week which seems to help with the anxiety caused from the hormones. It has not spiked above 170/112 since. The venous sampling will check both adrenal gland production.

You ask what else do I feel with the elevated BP. I use to experience the rapid pounding and headaches. Those are true symptoms of someone with a pheo who is not well alpha and beta blocked. I am. My headaches are tolerably dull now. The only symptoms I have when my BP spikes to over 200 now is my right hand shakes. When I feel little surges to my heart, I take a half of a xanax. I still have heat intolerance and in my home and at my office, I have a fan blowing on me at all times. If I make a short trip to the grocery store, I sweat profusely. The blockers have done little for that aspect. I am in almost a constant flush mode now. This is a main symptom of carcinoid as well as a symptom of pheo. I question the dx of pheo because elevated catechols could be, as I said before, the adenoma pushing on the medulla of adrenal or carcinoids are also producing catechols. Both of these are confirmed events that do happen. My friend who travels around the country giving lectures to doctors on malignant hypertension is in her last stages of carcinoid and her noids secrete catechols. Her dx was too late and identical to my path she tells me. She found me and took a special interest and is using my case as part of her next paper she is writing. You have got to understand, my case is that of a zebra ("when you hear hoof beats and it's not a horse, then it may be a zebra"). Now there is a joke with my doctors saying my zebra has fins. I am in good hands with my care currently. I am just very rare. I do need support which is why I come to the support boards. I knew little to nothing on Friday about aldosterone and I still know only a teensy bit.

I do not need to be instantly judged and attacked when I come to you for support. I am a professional who is very ill. I absorb good information in search of being made well. I learn from others experiences which is why I am here. Believe me, after being on the pheo board since 2004, reading endless papers, symposium transcriptions, I do know about pheos. I am still learning about carcinoid syndrome. If you have any more questions, feel free to ask me.

Debi

[Guest guest]

I am being tested for the MENs mutations.

[Guest guest]

Carcinoid also causes elevated BP. Read the link I included in my one post of the neuroendocrine tumor book written by Dr.s Woltering, Vinik, etc. The latest and greatest on carcinoids. Many people on the carcinoid board have elevated BP. It also causes not only left sided heart thickening, but they have found out it causes right-sided thickening.

[Guest guest]

Being from Missouri the only way I belive my pt is on a low salt

diet and BP has not changed is to have them collect a 24 hr urine and

test it for Na and K. You can ask your Dr. to do this. If you are

swelling you are getting too much salt somewhere.

What else do you feel with the BP surges? rapid pounding heart or

headache or sweating? If the tests suggested a pheo why were you

not operated on. I have always preached that one the

diagnosis has been made procede to surgery as soon as BP is controlle

with alpha blockers and BB. This plan comes from an experience in my

training at Duke when a pt with a pheo died waiting for surgery longer

than we had recommended.

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Newbie scarfing up knowledge!

I found the DASH diet on this site. It is very similar to the one the

dietician had me on after my heart attack. I've adhered to the low

sodium (very low sodium) for 3 years now. In my case, the only

difference in low sodium I see is in fluid retention vs. no fluid

retention. My BP has a mind of it's own. It will be low one minute and

soar to over 200/130 in a heart beat and be back down the next as

proven by both endless lengthly hospital visits, BP 24 hr monitors and

my own constant monitoring. If I eat any sodium at all, I swell up like

a balloon. I mean any at all including the little bit you find in

frozen veggies. I have a high sodium intolerance. I cook with natural

herbs which I grow myself. Most of my veggies, I grow myself or I try

to buy local fresh produce. I even watch my water content of sodium. I

suppose I'm just not in the norm of most people. I've just had to be so

very active in my health when nobody else was there. I've learned to

listen to my body and find out why and how to my questions. That is the

scientist in me.

Debi

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

[Guest guest]

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

AS

you can see many parts of medicine are not an exact Science. The

medullary is the one that has been associated with familial disease and

pheo. There may even be a gene test now to screen for this as I

recall. <I will look next week but you can do a lit

search on <pubmed for inherited thyroid cancer to see whats new.

Re: Newbie scarfing up knowledge!

Thyroid: The histology and pathology reports are being re-reviewed. They are very detailed and enough that my doctor believes I can get a sound diagnosis as to what kind of thyroid cancer I had. There was a discrepancy between 2 very well known pathologists at the time. One was from the Mayo and the other from Washington Univ. hospital. Medullary is most often associated with pheochromocytomas. Mine shows a mix of papillary, follicular and an unknown cancer of an A-typical type. I only recently got the report from the hospital who did the surgery in WV. I am a complicated mess!

Debi

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

[Guest guest]

<i would recommend you try to see Dr. Jay Gainer in

Nashville. Tell his office I am referring you. Carcinoid

usually causes low BP. Be certain they do ACTH infusion before

the sampling. Also ask what is their cure rate based on his AVS

sampling-1-5 years later. We published one of the best PA papers

with the NAshville group about 25 years ago. If you did not see

someone who specializes in HTN there you were not directed to who you

needed to see. As you can tell by our site many Endos have little

experience with it.'

Be sure your insurance will cover it the AVS. One pt on our site

from Mich was billed 37,000 USD but that must have been a billing

erro-havent heard the final on that one.

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Newbie scarfing up knowledge!

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

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

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

[Guest guest]

ita,

Good information for me! thank you! I can't wait till they figure out what to do with me. With carcinoid, the recommendation is to take sandostatin. With the aldosterone problem now, there is spiro (I still don't know much about it). My potassium levels have been low for over 3 years. For the longest time, I asked why is it low? I was told it happens to some people as they age. One of my problems is doctors pushing off more pills on me without finding the root of the problems. I refuse most anymore unless it is absolutely necessary. I don't ever remember researching K......silly me. Also, I didn't know you could sweat due to aldosterone. It is so amazing how so many endocrine problems overlap in symptoms. No wonder it is so hard for some doctors. I also have thirst and carry water around with me all the time. I was diagnosed with sjogren's by my opthamologist due to the low tear production, slightly elevated ANA and dry mouth. Now I am questioning that too! Maybe everything I have wrong with me lies on this one thing and is causing everything else to be out of whack mimicking other diseases. I am so confused with this all. Maybe this venous sampling will tell them something they need to know. I just need help and it's all making me crazy at this point. Way too much going on. Maybe I just need to walk away from it and catch a breather! I am starting to feel a little more comfortable with my current primary to where maybe soon, I can let up on my end and relax knowing I'm in good hands.

Did you have out of control BP prior to the spiro? I've not heard of GRA either. I am familiar with MENs. I do suspect a hereditary gene or chromosome problem. Lots of unusual cancers on my mom's side, including her. My three aunts had cancer that had metastasized to their whole skeletal system by the time they were diagnosed. My grandma had pancreatic and liver cancer, my great grandma died of colon cancer, everyone has thyroid problems on that side. My sister has symptoms like mine but is currently going through treatment for breast cancer so she can't be tested for much else right now. Fortunately, I did get her to change to my doctor who can't wait to start testing her too.

Thank you for telling me your story. It sure helps me understand this a little more.

Debi

[Guest guest]

Debi

You can get the dash diet from amazon.com I found mine at Borders book store.

Wow you are quite the complication. I sure hope you get some help and get

feeling better. Dr. Grim is a life saver. ita

[Guest guest]

Thank you, ita. I have hopes of getting better.

Debi

[Guest guest]

Debi

Your story is quite amazing and a rare case. Its so nice that you have found

this group on Conns. Aldosterone also makes people sweat its just so rough.

I take atenolol which stops the sweating sort of and spiro lowered my blood

pressure in 3 days an keeps my K up to par.

My daughter noticed I turned red the other day and I got real hot. I am doing a

dexametsone surpression test tonight and labs mon am. Dr. Grim thinks I may have

GRA Glucocorticoid remediable aldosteronism a genetic type since I became well

on hydrocortisone and raised my K with HC an lowered my BP twice now befor I got

on spior. Yes I also have a tumor on my left adrenal. Good thing you can do your

research as most dr.s would not have a clue to you complicated situation.

Heck 4 Endos in the last year could not even figure out I had Conns and too lame

to do labs even though my K fell low with HBP,dehydration drinking water like a

fish and so weak I could hardly keep my arms up on the stearing wheel, I could

hardly get out of a chair.I even got a letter from one of them saying my

hormones are in balance. What a joke. I am high in aldo, testosterone, an DHEA

so far.

I have one of the metanphrines that keeps getting higher as well but is still in

range.

I did lots of labs last week so we will see what gives.

ita

>

> Thank you, ita. I have hopes of getting better.

>

> Debi

>

[Guest guest]

Debi

Where is your carcinoid producing tumor located could it be in your adrenal I

guess that is why your going to do AVS. I know I have Conns but I have a bunch

of other symptoms going on as well I know it is from my adrenal gland. Your

information is good for me too. ita

> ita,

Good information for me! thank you! I can't wait till they figure out what

> to do with me. With carcinoid, the recommendation is to take sandostatin.

> With the aldosterone problem now, there is spiro (I still don't know much

about

> it). My potassium levels have been low for over 3 years. For the longest time,

> I asked why is it low? I was told it happens to some people as they age. One

> of my problems is doctors pushing off more pills on me without finding the

> root of the problems. I refuse most anymore unless it is absolutely

necessary.

> I don't ever remember researching K......silly me. Also, I didn't know you

> could sweat due to aldosterone. It is so amazing how so many endocrine

> problems overlap in symptoms. No wonder it is so hard for some doctors. I

also have

> thirst and carry water around with me all the time. I was diagnosed with

> sjogren's by my opthamologist due to the low tear production, slightly

elevated

> ANA and dry mouth. Now I am questioning that too! Maybe everything I have

> wrong with me lies on this one thing and is causing everything else to be out

of

> whack mimicking other diseases. I am so confused with this all. Maybe this

> venous sampling will tell them something they need to know. I just need help

> and it's all making me crazy at this point. Way too much going on. Maybe I

> just need to walk away from it and catch a breather! I am starting to feel a

> little more comfortable with my current primary to where maybe soon, I can

let

> up on my end and relax knowing I'm in good hands.

>

> Did you have out of control BP prior to the spiro? I've not heard of GRA

> either. I am familiar with MENs. I do suspect a hereditary gene or chromosome

> problem. Lots of unusual cancers on my mom's side, including her. My three

aunts

> had cancer that had metastasized to their whole skeletal system by the time

> they were diagnosed. My grandma had pancreatic and liver cancer, my great

> grandma died of colon cancer, everyone has thyroid problems on that side. My

> sister has symptoms like mine but is currently going through treatment for

> breast cancer so she can't be tested for much else right now. Fortunately, I

did

> get her to change to my doctor who can't wait to start testing her too.

>

> Thank you for telling me your story. It sure helps me understand this a

> little more.

>

> Debi

>

[Guest guest]

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Re: Newbie scarfing up knowledge!

ita,

Good information for me! thank you! I can't wait till they figure out what to do with me. With carcinoid, the recommendation is to take sandostatin. With the aldosterone problem now, there is spiro (I still don't know much about it). My potassium levels have been low for over 3 years. For the longest time, I asked why is it low? I was told it happens to some people as they age.

This is a new one for me. If anything tends to go up as one gets

older. Please take my article to this Dr. to protect futrue

patients.'''

One of my problems is doctors pushing off more pills on me without finding the root of the problems.

This is good way to get into trouble ant to get too many pills. Istop more pills than I start.

I refuse most anymore unless it is absolutely necessary. I don't ever remember researching K......silly me. Also, I didn't know you could sweat due to aldosterone. It is so amazing how so many endocrine problems overlap in symptoms. No wonder it is so hard for some doctors. I also have thirst and carry water around with me all the time. I was diagnosed with sjogren's by my opthamologist due to the low tear production, slightly elevated ANA and dry mouth. Now I am questioning that too! Maybe everything I have wrong with me lies on this one thing and is causing everything else to be out of whack mimicking other diseases. I am so confused with this all. Maybe this venous sampling will tell them something they need to know.

I always try spiro before venous sampling. If the BP does not improve then surgery will also not likely help.

I just need help and it's all making me crazy at this point. Way too much going on. Maybe I just need to walk away from it and catch a breather! I am starting to feel a little more comfortable with my current primary to where maybe soon, I can let up on my end and relax knowing I'm in good hands.

Did you have out of control BP prior to the spiro? I've not heard of GRA either. I am familiar with MENs. I do suspect a hereditary gene or chromosome problem. Lots of unusual cancers on my mom's side, including her. My three aunts had cancer that had metastasized to their whole skeletal system by the time they were diagnosed. My grandma had pancreatic and liver cancer, my great grandma died of colon cancer, everyone has thyroid problems on that side. My sister has symptoms like mine but is currently going through treatment for breast cancer so she can't be tested for much else right now. Fortunately, I did get her to change to my doctor who can't wait to start testing her too.

Trust all in your family are getting regular colonoscopy.

Thank you for telling me your story. It sure helps me understand this a little more.

Debi

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[Guest guest]

Sorry I sent the last message too soon. On a Swedish Computer and keys are in different places.

What I have not seen are many reports that removing the carcinoid cures

the HTN-but have not looked at that for some time. How many on

your group have been cured by having the carcinoid removed. Well

if they were cured they would have left the group is my guess.

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Newbie scarfing up knowledge!

Carcinoid also causes elevated BP. Read the link I included in my one post of the neuroendocrine tumor book written by Dr.s Woltering, Vinik, etc. The latest and greatest on carcinoids. Many people on the carcinoid board have elevated BP. It also causes not only left sided heart thickening, but they have found out it causes right-sided thickening.

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[Guest guest]

carcinoid and HTN--just did a pubmed search on carcinoid and HTN

an it looks like most HTN with carcinoid is to due to the tumor making

too much ACTH not the carcionoid chemicals. They also have low K

and Cushings.

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Newbie scarfing up knowledge!

I found the DASH diet on this site. It is very similar to the one the

dietician had me on after my heart attack. I've adhered to the low

sodium (very low sodium) for 3 years now. In my case, the only

difference in low sodium I see is in fluid retention vs. no fluid

retention. My BP has a mind of it's own. It will be low one minute and

soar to over 200/130 in a heart beat and be back down the next as

proven by both endless lengthly hospital visits, BP 24 hr monitors and

my own constant monitoring. If I eat any sodium at all, I swell up like

a balloon. I mean any at all including the little bit you find in

frozen veggies. I have a high sodium intolerance. I cook with natural

herbs which I grow myself. Most of my veggies, I grow myself or I try

to buy local fresh produce. I even watch my water content of sodium. I

suppose I'm just not in the norm of most people. I've just had to be so

very active in my health when nobody else was there. I've learned to

listen to my body and find out why and how to my questions. That is the

scientist in me.

Debi

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[Guest guest]

There is no cure for carcinoid. It is a slow growing cancer unlike any other where there is no cure. In carcinoid there is a primary tumor which may never be found as with many. It is important to find the primary. The mets are often found before the primary. Primaries are typically found in one of 3 places: midgut, foregut, hindgut. Most are found in the small intestines. Carcinoid tumors are small with average size of 1-2 cm to smaller. They can be microscopic, sand size and mets to liver, pancreas, etc can be in the hundreds of these boogers. It is monitored the rest of one's life through both serological (CgA, 5-HIAA (serotonin metabolite), serotonin, gastrin, calcitonin, etc for mets / locations. CgA monitors the growth rate of carcinoid. What controls the BP, diarrhea, and the syndrome (i.e. flushing) for noids is sandostatin / LAR injections (novartis). You start out with 2 wks of self injections moving to monthly (or more often) injections given by a provider / oncologist. If a level shows growth, you have another indium 111-octreotide scan. More ablations/surgeries, etc. Over and over. Note: Octreoscan and MIBG scans will not pick up tumors <1 cm so many have elevated components, syndrome and no primary found. Carcinoids like to hide in diverticuli in colon. To find it "you have to first suspect it". It is true that it depends on what the noids secrete whether you BP is high or drops. In my BP readings on the holter monitor, every 15 minutes a reading, my highest reading was 198/127 p 110 and lowest was 98/63 p 34. Fifteen minutes after the lowest reading it was 178/110 p64. Right now there are two theories with mine. Positional pushing on tumor(s), digestive moving over tumor(s) causing the variations. I am scheduled with the carcinoid spec.gastro here in October. He is going to recheck the 2 diverticuli in my colon as well as have me swallow a little camera that takes a picture a second.

I would suggest going to carcinoid.org for just about anything updated on carcinoid you'd want to know.

In my case, I have the very high elevated 5-HIAAs, catachols, and carcinoid syndrome. My primary has not been found due to it is too small to show up on nuclear imaging (quite common unitl it grows). Carcinoids can secrete many different hormones. It is true that ACTH is one. However, many noids with elevated BP secrete other components and not ACTH. For example: With my Dr. friend who was dx too late, she has noids secreting 5-HIAA and Catacholamines only (same as me)... found by her rheumatologist after many years of multiple doctors misdiagnosing her. She has had multiple surgeries to remove many mets. The most recent report is within 6 months, her pancreas will be one third covered with mets. She is on sando and has come off all her BP meds. Occasionally, her dose is increased. I converse regularly with noids with elevated BP. Every single one of us secrete 5-HIAA in 24 hr urines (avoiding all on list). Some of them have progressed to extensive mets showing on scans now, some have had liver ablations, some have CgA now showing up in blood. Depending on the serotonin / metabolites secretion and location has a lot to do with whether you have low or high BP. Old information on the web will tell you old news prior to the research clinical trials (which are over and papers published). The sad thing about carcinoid is that a person can have it for 30 years due to the slow growth and by the time it is found, they have the syndrome, meaning it has metastisized to liver, etc. Most people with carcinoid can recall flushing for many years. This particular flushing is often dx after a person is asked "do you turn red or pink after drinking red wine?" The majority of flushing is to the face and neck only. That was my sign. It is believed that once I start the sando injections, my tumor secretion of serotonin will be suppressed and I can come off my BP meds. Every person I know who is on sando with prior elevated BP are now off their meds. It's a whole new world, isn't it?

There is a doctor's site as well as patients site (interacted with doctors) on ACOR carcinoid. This site is where doctors learn and ask questions. My doctors now use it. They all have a copy of Dr. Woltering's book also. Prior to my case, none of them knew a thing about it. Dr. W. recently dx his 90 yr old mother with carcinoid.

The more people know about carcinoid (which is proving to be more widespread than previously believed), the more people can be tested for it. The carcinoid site for patients with doctor interaction is very active. I get an average of 50 emails a day from posts from people all over the world with various stages of the disease. Very friendly site.

Enough for now,

Debi

[Guest guest]

I have been tested for Cushing's and Lupus randomly for 5 years now. My ACTH has never been elevated. Suppression tests were normal. See other post.

Debi

[Guest guest]

I am not trying to attack you--just give you my experience of 40

years in dealing with diffiuclt HTN and publishing over 220 papers

about it.

Will be interested in finding out what you have in the end. I

have seen many pheos and primary aldos and measured HIAAS in many

others but have only seem one carcioid with HTN and she had Cushing's

due to ACTH secrteion.

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Re: Newbie scarfing up knowledge!

I don't mean to come across as arrogant or a know it all so I apologize if I do. There has been so much going on with me that I leave out little details. Realize that I am not taking sando or anything that suppresses hormones secreting rampant in my system at this point. Sometimes I feel like I'm going nuts and my mind doesn't always work correct so forgive me if I leave out in between the line details. Just ask me and I'll tell you. Please don't attack me.

I also have renal insufficiency and I have chronic liver disease. If I get any sodium at all I swell up. That means through my process of elimination over the past 3 years I have learned where a lot of the hidden sodium lies. I recognize what it does to me so I avoid it in every way I can. Rarely does this happen anymore. Realize that the majority of my diagnosis have come in the past 1.5 years of constant battling. The pheo definitive came last week when I was accepted for admittance to NIH after my last set of catachols were very elevated. In the past when they were elevated, my endocrinologist and prior doctor said "wait 6 months and see if it grows". Levels were checked along with my last test of 5-HIAA which were elevated more than the previous 1 month ago.

I was hospitalized a year ago to have my gallbladder out. It took them 5 days to get my BP down after being in malignant hypertensive state prior to the surgery. I was throwing up green bile. I was alpha and beta blocked well. Finally, they removed the gallbladder. They tried to do pheo workup at the time but told me results would be inacurate due to all the interfering meds in me. While in the hospital, I fired my nephrologist and primary doctor and put my care in the hospitalist who changed my BP meds. He said the adrenal gland needed to come out and referred me to my current primary doctor. For a few months the meds kept the BP up and down and a lower level. No severe spikes until about 3 months ago. My clonidine was raised 2x during that time. Testing was hard to knock down results due to I could not be off my BP meds even for 4 hrs. My doctor said I'd stroke out. That went for nuclear imaging as well. He kept on trying to get the results even on the meds believing it would happen and it did. Then came the question was my carcinoid secreting catacholamines and the focus by my doctor was on the carcinoid. My heart was becoming more enlarged (echocardiogram) and it was believed the serotonin was attacking my heart . Then in the last round of testing, my catechols, 5-HIAA and aldosterone / renin ratio were all elevated. My doctor didn't know what to do next. That is when the decision was made to do the adrenal venous sampling. I got an email from Dr. Woltering this morning saying yes, have the venous sampling. I understand this. I have high levels of various hormones secreting over everything and I have not had much control over it. I was started on xanax last week which seems to help with the anxiety caused from the hormones. It has not spiked above 170/112 since. The venous sampling will check both adrenal gland production.

You ask what else do I feel with the elevated BP. I use to experience the rapid pounding and headaches. Those are true symptoms of someone with a pheo who is not well alpha and beta blocked. I am. My headaches are tolerably dull now. The only symptoms I have when my BP spikes to over 200 now is my right hand shakes. When I feel little surges to my heart, I take a half of a xanax. I still have heat intolerance and in my home and at my office, I have a fan blowing on me at all times. If I make a short trip to the grocery store, I sweat profusely. The blockers have done little for that aspect. I am in almost a constant flush mode now. This is a main symptom of carcinoid as well as a symptom of pheo. I question the dx of pheo because elevated catechols could be, as I said before, the adenoma pushing on the medulla of adrenal or carcinoids are also producing catechols. Both of these are confirmed events that do happen. My friend who travels around the country giving lectures to doctors on malignant hypertension is in her last stages of carcinoid and her noids secrete catechols. Her dx was too late and identical to my path she tells me. She found me and took a special interest and is using my case as part of her next paper she is writing. You have got to understand, my case is that of a zebra ("when you hear hoof beats and it's not a horse, then it may be a zebra"). Now there is a joke with my doctors saying my zebra has fins. I am in good hands with my care currently. I am just very rare. I do need support which is why I come to the support boards. I knew little to nothing on Friday about aldosterone and I still know only a teensy bit.

I do not need to be instantly judged and attacked when I come to you for support. I am a professional who is very ill. I absorb good information in search of being made well. I learn from others experiences which is why I am here. Believe me, after being on the pheo board since 2004, reading endless papers, symposium transcriptions, I do know about pheos. I am still learning about carcinoid syndrome. If you have any more questions, feel free to ask me.

Debi

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[Guest guest]

In a message dated 9/18/06 5:46:50 AM, moonium@... writes:

 

The more people know about carcinoid (which is proving to be more widespread than previously believed), the more people can be tested for it. The carcinoid site for patients with doctor interaction is very active. I get an average of 50 emails a day from posts from people all over the world with various stages of the disease. Very friendly site.

 

Enough for now,

Debi

I guess it is a part of a definition problem. The definition I learned was that Carcindoid had high 5HIAA but cats etc were normal unles there was also ACTH being produced. When cats are high then the problem is of a different type of neuroendcine tumor that makes both NE and serotoin. But will look at the site and learn. Thanks.

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 9/18/06 5:46:50 AM, moonium@... writes:

carcinoid.org

here is what I get when I try:

You have reached this page in error, please send email to webmaster@...

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.

stating which page you were attempting to reach.

[Guest guest]

Did get some info from carcinoid.info and best I can tell is that pure carcinoid does not cause high blood pressure, other neuroendocrine tumors do.

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.