I'm back

November 12, 2007

Thank you Jackie, for the warm welcome. I feel like I've come home. That's good news about the sleep patterns. I've stayed up over 24 hours sometimes, just can't sleep. I was taking Temazapam, but it quit working, so I quit taking it. Melatonin works, if I can relax enough to let it. Another group I'm on has started a insomniacs room. Several other ladies have the same problem and we exchange tips and jokes about the situation. You know how I love to joke. lol

Sharon in NW WaAre we havin' fun yet?

Re: I'm back

WELCOME BACK honey!!! We're so glad you are back!!!

I know what you mean about the hair issue, but it will grow back,, about half an inch a month is typical unless your hair grows faster like mine..

It took me nearly 3 years AFTER I finished tx before my sleep patterns returned, its only been really the last 6-8 months that I've not needed a sleeping pill.. I used melatonin for about 3-4 months in place of the Restoril when I stopped using that and it really worked well,, now I can fall asleep anywhere, anytime, its amazing, like it was before I even knew I had HCV... Ask your doc about the melatinin if you are interested in using it,, it worked a miracle for me.. but it takes several weeks before it really starts resetting your internal clock..

once again, IM THRILLED you are back sweetie!

love you

me

November 12, 2007

well Im glad you feel you've come home cuz all of us here 'at home' missed you! I've taken you off moderation so you are free to post as you wish sweetie.. well try a warm bath before you take the melatonin and see if it works for you then, it should,, I took 6 mg each night of 'source naturals' melatonin,, worked great! well at least you have something to do if you cannot sleep,, lol,, talk with you soon! jackieSHARON CROSBY <csharonxoxo@...> wrote: Thank you Jackie, for the warm welcome. I feel like I've come home. That's good news about the sleep patterns. I've stayed up over 24 hours sometimes, just can't sleep. I was taking Temazapam, but it quit working, so I quit taking it. Melatonin works, if I can relax enough to let it. Another group I'm on has started a insomniacs room. Several other ladies have the same problem and we exchange tips and jokes about the situation. You know how I love to joke. lol Sharon in NW WaAre we havin' fun yet? Re: I'm back WELCOME BACK honey!!! We're so glad you are back!!! I know what you mean about the hair issue, but it will grow back,, about half an inch a month is typical unless your hair grows faster like mine.. It took me nearly 3 years AFTER I finished tx before my sleep patterns returned, its only been really the last 6-8 months that I've not needed a sleeping pill.. I used melatonin for about 3-4 months in place of the Restoril when I stopped using that and it really worked well,, now I can fall asleep anywhere, anytime, its amazing, like it was before I even knew I had HCV... Ask your doc about the

melatinin if you are interested in using it,, it worked a miracle for me.. but it takes several weeks before it really starts resetting your internal clock.. once again, IM THRILLED you are back sweetie! love you me Jackie

November 12, 2007

Sharon, I don't know if you remember me, I am back after being gone about a year now? And I am not sure if you are the right Sharon or not? My name is Marie. I just finished treatment for the second time, and this time I almost lost all my hair - just had stragglers, which I should have shortened my hair prior to starting or during, but as you say - vanity comes into play not always at the most convenient times. I do have great news for you - my hair has grown back extra thick, and I also have a trick that helps it to grow about twice as fast. After you shampoo and condition you hair, I assume you rinse in warm water? After that all is completed, turn off the hot and do a full rinse in cold. I promise you - if you can stand it, you hair will some in so quick and so much fuller. I too had terrible skin problems, and although mine is better, it's not completely healed - just part of it. I don't know if I mentioned it - but I didn't stay in remission this time, I responded at 11 weeks, but sides got so bad that they had to lower the dose, and as soon as they lowered the dose - it skyrocketed... So I am done trying for awile, I have done treatment 3 times in less than 4 years, and it has taken a pretty good toll on the body.. But then I play pretty hard, have my whole life - so I am quite sure that is a contributing factor to my severely aching joints. I also found out after the first treatment that I have RA - now that is currently kickin my butt. It's taking almost 4 months to see a Rhuematoligist. And all the medications they currently have for treating RA - all severely damage the liver... Pain, pain, pain - but I refuse to give up or give in... Well GF - I have said enough for now - write me and update me about you and how you have been... May God Bless you and yours Luv, hugs and prayers Marie -- I'm back Hi all, I'm back after a little break from the group. I'm 3 months out of treatment, not feeling totally better yet, but there is definite improvement. I'll feel sooo much better when I grow a head of hair. lol Our vanities come into play at the most unnecessary times!! Other than that, I don't sleep well, and do hope that improves. My stomach destresses have gone away completely and my skin is soft again. So, there's hope for a normal return after tx, friends!! Sharon in NW WaAre we havin' fun yet? Tube group share Becky-2007

November 12, 2007

, this is also my second round of treatment. I was so sick in 2000 I only lasted just short of 6 months and relapsed 4 months later. I hung on much longer this time. I have reached remission, but can only hope it continues. We never know what is in store for us, do we?

I'll be 65 in a few short months and will not attempt to treat again. My skin and hair will repair, I have osteoarthritis and it has been made worse by the tx, but at my age, it's inevitable anyway, so gotta keep my chin up. I don't have it near as bad as many do and I feel thankful, just not totally up to snuff yet.

Thanks for your note. I DO remember your name, but not the details. The brain fog is absolutely the worst side effect of this treatment and of the disease itself. I have worried many times that I'm entering dementia, but I'm not----yet. lol

Sharon in NW WaAre we havin' fun yet?

January 21, 2009

Welcome Back.

Lori

________________________________

From: Erek gerende <erektg@...>

Sent: Wednesday, January 21, 2009 6:34:17 PM

Subject: I'm back

Hi everyone,

it's been a while since I posted. I've been a member for over a year

but haven't done anything but lurk since April of 08. Actually I was

completely out of touch from April 10 to September 15 because I was

traveling with my folks in a motorhome across country and e-mail was

spotty.

Just a quick refresher I am 35 with SMA type II (originally diagnosed

Werdnig-Hoffman type IB back in the dark ages) I live in Camarillo

California with my folks and have had service dogs from Canine

Companions for Independence for 21 years and my current four-legged

partner is Honor III. I haven't been that active since I got home

only lurking because for the first time in my life I'm in a

relationship. Her name is and she is also a PWD she has CP and

is in a power wheelchair but has much more capability than I do. I've

known her since we were kids and went to the same school that had an

orthopedic unit for special needs kids back in the DC area in the

late 70s and early 80s.

I'm hoping to be more involved here than I have been in the past and

I might need some advice on various topics.

It's good to be back

Erek

April 2, 2009

Can file a complaint with the state medical society.

38 years would usually be considered a cure for sure. Wonder if she developed

it again in other breast. I will ask my son who is a heme-onc Dr.

Novasc does not cause low K.

Clarence E. Grim, BS, MS, MD

On Thursday, April 02, 2009, at 01:56PM, " Valarie " <val@...>

wrote:

>I've been in eastern Oklahoma for quite a while. My MIL died on March 20 of

>breast cancer that had metastized to her entire skeletal structure. She had

>a radical mastectomy 42 years ago and was well until about four years ago.

>

>We had hospice help but only for the last two weeks. I cannot say enough

>good about hospice. They taught us how to care for MIL and control pain

>while protecting her dignity. We should have had that help months and

>months ago. MIL should not have suffered as she did. Until hospice stepped

>in, she did not have adequate pain control.

>

>Some interesting observations.

>

>1. I've gone through her medical records but don't yet have any lab tests.

>Over and over, she complained of pain in her legs and " knots " in her

>muscles. She was prescribed NSAIDS, Lyrica, skelaxin. At one point, she

>was given a CK muscle test. I don't have results for that. At each visit,

>it was noted " Cancer: Cured. " At no time did her doctor do any cancer

>markers or order any type of scan. Had he understood that the most common

>location for BC to return is the bones, she would have had a chance for

>treatment.

>

>2. She was on 40 mEq K/d and on Norvasc. Does Norvasc cause low K? There

>is no evidence that aldosterone and renin tests were ever done. There is

>ample evidence that she routinely had stomach problems.

>

>3. About a year ago, MIL took a stand. She told her doc she was taking no

>more Vytorin because it was poison (according to news reports). He did not

>indicate any awareness of Vytorin's problems, and put her on a different

>statin. Why he didn't consider statins in her pain is beyond me.

>

>3. She went to a new doc last summer. At the first meeting, the new doc

>recognized the cancer and ordered tests that confirmed her suspicions. By

>then, it was too late.

>

>It appears to me that she was mistreated, both with regard to her potassium

>and, of course, with the breast cancer. We haven't decided what we're going

>to do. A lawsuit would be worthless because what is an 82-year-old's life

>worth?

>

>Val

>

April 2, 2009

There was no sign of it (from mammogram) in the other breast.

So if Norvasc doesn't cause low K, she should have been tested for PA.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2

Can file a complaint with the state medical society.

38 years would usually be considered a cure for sure. Wonder if she

developed it again in other breast. I will ask my son who is a heme-onc Dr.

Novasc does not cause low K.

April 2, 2009

Depends on what else was going on. If BP up and low K yes.

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Apr 2, 2009, at 8:44 PM, Valarie <val@...> wrote:

> There was no sign of it (from mammogram) in the other breast.

>

> So if Norvasc doesn't cause low K, she should have been tested for PA.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of lowerbp2

>

> Can file a complaint with the state medical society.

>

> 38 years would usually be considered a cure for sure. Wonder if she

> developed it again in other breast. I will ask my son who is a heme-

> onc Dr.

>

> Novasc does not cause low K.

>

April 2, 2009

Hi Val:

So sorry about hearing of the loss of your MIL.

Glad you are back on the group.

Farah

On Thu, Apr 2, 2009 at 11:56 AM, Valarie <val@...> wrote:

> I've been in eastern Oklahoma for quite a while. My MIL died on March 20

> of

> breast cancer that had metastized to her entire skeletal structure. She had

> a radical mastectomy 42 years ago and was well until about four years ago.

>

> We had hospice help but only for the last two weeks. I cannot say enough

> good about hospice. They taught us how to care for MIL and control pain

> while protecting her dignity. We should have had that help months and

> months ago. MIL should not have suffered as she did. Until hospice stepped

> in, she did not have adequate pain control.

>

> Some interesting observations.

>

> 1. I've gone through her medical records but don't yet have any lab tests.

> Over and over, she complained of pain in her legs and " knots " in her

> muscles. She was prescribed NSAIDS, Lyrica, skelaxin. At one point, she

> was given a CK muscle test. I don't have results for that. At each visit,

> it was noted " Cancer: Cured. " At no time did her doctor do any cancer

> markers or order any type of scan. Had he understood that the most common

> location for BC to return is the bones, she would have had a chance for

> treatment.

>

> 2. She was on 40 mEq K/d and on Norvasc. Does Norvasc cause low K? There

> is no evidence that aldosterone and renin tests were ever done. There is

> ample evidence that she routinely had stomach problems.

>

> 3. About a year ago, MIL took a stand. She told her doc she was taking no

> more Vytorin because it was poison (according to news reports). He did not

> indicate any awareness of Vytorin's problems, and put her on a different

> statin. Why he didn't consider statins in her pain is beyond me.

>

> 3. She went to a new doc last summer. At the first meeting, the new doc

> recognized the cancer and ordered tests that confirmed her suspicions. By

> then, it was too late.

>

> It appears to me that she was mistreated, both with regard to her potassium

> and, of course, with the breast cancer. We haven't decided what we're going

> to do. A lawsuit would be worthless because what is an 82-year-old's life

> worth?

>

> Val

>

April 2, 2009

Thanks, Farah. I wish I'd been more involved with MIL's medical stuff but

I've been fighting my own battle for quite a while. It was very difficult

to learn anything because she didn't understand anything about what was

going on (i.e., why she was taking potassium). For a while, her doc was

sending my husband some reports but quit that as soon as he thought he

could.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Farah Rahbar

Hi Val:

So sorry about hearing of the loss of your MIL.

Glad you are back on the group.

May 5, 2009

This is excellent. So MC blockade makes you better! This suggests that there

may be another MC present such as DOC. Do you have normal periods? Had

children?

You have low renin and pretty low aldos. (need normal values for this lab

however.)

Has you K ever been low?

Trust you don't eat licorice every day? This can do this but aldo is usually

lower. Any 24 hour urine aldo done?

The AVS adrenal aldo also seems low even after ACTH but again need normal values

and units. Is the source not in the adrenal? Can be in ovary even the brain.

Do you have Liddle's syndrome? see my review article. Ask your team. This

responses not only to MC blockers but also to triampterene.

Apparent mineralocorticoid excess? see my review article.

Clarence E. Grim, BS, MS, MD

On Tuesday, May 05, 2009, at 02:24PM, <carcinoidnews@...> wrote:

>Hi -

>

>I originally joined the group Jan 2008. I have been absent since shortly after

I joined due to some unrelated extenuating circumstances.

>

>I have undergone work-up and treatment for suspected carcinoid syndrome

following a hypertensive crisis in pregnancy. I had a previous history of

post-prandial fatigue since childhood.

>

>Glucose tolerance tests completely normal, normal insulin tests, normal

response etc. No abnormaility of glucose regulation was ever found.

>

>All tests for pheo negative (including urine tests performed by the NIH on

consult basis).

>

>No carcinoid tumor has ever been found. I have been treated with high doses

(20-30mg q 2 weeks) sandostatin with a moderate control of symptoms.

>

>After joining the group last year, my doctors did some screening tests for

hyperaldosteronism, which were unremarkable, and eventually found elevated

DHEA.

>

>Long story short, my endo started me on spiro last Dec to control the hirsutism

I also have and miracle- of- miracles, the lifelong post-prandial fatigue

virtually disappeared (except when I would forget to take a pill with a meal).

Fatigue: ranging from inability to focus or concentrate to falling asleep with

facial flushing, tachycardia, and mildly/moderately elevated BP)

>

>After 5 months of spiro (100mg/day), during which sando was completely stopped,

my endo switched me to Inspra.

>

>WOW!!!! I haven't felt this good since I was a very young child, before the

post-prandial fatigue started.

>

>Not sure how much closer we are to an actual diagnosis - my endo is exploring

the possibility that the elevated DHEA I have may be activating the

mineralocoticoid receptors - but at least I now have a treatment that works way

better than sando at a fraction of the cost.

>

>Family history:

>My dad, my nine-year old daughter, and a niece all have the same symptoms, and

my dad has elevated DHEA as well, not as high as mine.

>

>Here are the results of the screening tests for PA (serum, not 24 hr urine)

>

>1: aldosterone 5.5 with renin 0.88 ratio = 6.25

>2: aldosterone 5.8 with renin 0.44 ratio = 13.18

>

>Sample 1 was fasting, sample 2 was post-prandial.

>

>AVS was done to look for the source of the DHEA as I have ct scan evidence of 2

small nodules in left adrenal cortex. Despite care on the part of the

interventional radiology team to make sure that the DHEA was ordered along with

some other pre-cursor hormones I have had mild elevations of (androsterone,

pregnantriol, pregnanetriol - all non-pregnant samples) the lab (Quest) screwed

up and didn't run the DHEA etc. They did run the cortisol and aldosterone,

though.

>

>Results:

>

>Right adrenal: Cortisol, pre-ACTH: 4.4 post-ACTH: 31.1

>

> Aldosterone, pre-ACTH: 1 post-ACTH: 49

>

>Left adrenal: Cortisol, pre-ACTH: 4.7 post- ACTH: 25

>

> Aldosterone, pre-ACTH: 3 post-ACTH: 39

>

>Any thoughts, anyone?

>

>My daughter has had only a handful of the episodes, ALL after ingesting

high-sodium foods, such as an oreo-cookie blizzard from DQ (just read the

nutritional info - OMG!! 530 mg sodium in a blizzard!!!

>

>The increase in BP is never really noticed much by the drs I have been to

because it's in the normal range. Same goes for my dad and daughter. In

pregnancy, they told me an elevation of 30 points above the patient's normal is

considered high BP for the patient during pregnancy. My dad and daughter have

the same situation. Low to mid-normal BP when asymptomatic. When symptomatic, my

bp and my dad's BP can increase 20-30 points, and still be in the high normal

range ( systolic BP 120-130).

>

>I know there is a lot of variation in BP day to day and hour to hour etc, but

it seems a bit suspicious to me that all affected family members have low BPS

when asymptomatic and BPs 20-30 points higher when symptomatic. The highest

increase I have had - other than pregnancy - is about 45 points systolic, going

up to around 145 systolic. The diastolic rarely elevates much. 70's usually,

even when systolic goes up. I stopped monitoring it years ago though, after the

carcinoid " diagnosis " because I kept being told my BP was good and I didn't have

a BP problem....

>

>And then there is the whole - WOW! response to spiro and inspra...

>

>Hmmm.....

>

>Joyce in Cinci

>

May 5, 2009

There is a rare syndrome in which the MC receptor is mutated so that

progesterone causes activation and HTN and low K during pregnancy which

disappears after preg. Give us more details about your pregnancies and HTN.

Clarence E. Grim, BS, MS, MD

On Tuesday, May 05, 2009, at 02:25PM, <carcinoidnews@...> wrote:

>Hi -

>

>I originally joined the group Jan 2008. I have been absent since shortly after

I joined due to some unrelated extenuating circumstances.

>

>I have undergone work-up and treatment for suspected carcinoid syndrome

following a hypertensive crisis in pregnancy. I had a previous history of

post-prandial fatigue since childhood.

>

>Glucose tolerance tests completely normal, normal insulin tests, normal

response etc. No abnormaility of glucose regulation was ever found.

>

>All tests for pheo negative (including urine tests performed by the NIH on

consult basis).

>

>No carcinoid tumor has ever been found. I have been treated with high doses

(20-30mg q 2 weeks) sandostatin with a moderate control of symptoms.

>

>After joining the group last year, my doctors did some screening tests for

hyperaldosteronism, which were unremarkable, and eventually found elevated

DHEA.

>

>Long story short, my endo started me on spiro last Dec to control the hirsutism

I also have and miracle- of- miracles, the lifelong post-prandial fatigue

virtually disappeared (except when I would forget to take a pill with a meal).

Fatigue: ranging from inability to focus or concentrate to falling asleep with

facial flushing, tachycardia, and mildly/moderately elevated BP)

>

>After 5 months of spiro (100mg/day), during which sando was completely stopped,

my endo switched me to Inspra.

>

>WOW!!!! I haven't felt this good since I was a very young child, before the

post-prandial fatigue started.

>

>Not sure how much closer we are to an actual diagnosis - my endo is exploring

the possibility that the elevated DHEA I have may be activating the

mineralocoticoid receptors - but at least I now have a treatment that works way

better than sando at a fraction of the cost.

>

>Family history:

>My dad, my nine-year old daughter, and a niece all have the same symptoms, and

my dad has elevated DHEA as well, not as high as mine.

>

>Here are the results of the screening tests for PA (serum, not 24 hr urine)

>

>1: aldosterone 5.5 with renin 0.88 ratio = 6.25

>2: aldosterone 5.8 with renin 0.44 ratio = 13.18

>

>Sample 1 was fasting, sample 2 was post-prandial.

>

>AVS was done to look for the source of the DHEA as I have ct scan evidence of 2

small nodules in left adrenal cortex. Despite care on the part of the

interventional radiology team to make sure that the DHEA was ordered along with

some other pre-cursor hormones I have had mild elevations of (androsterone,

pregnantriol, pregnanetriol - all non-pregnant samples) the lab (Quest) screwed

up and didn't run the DHEA etc. They did run the cortisol and aldosterone,

though.

>

>Results:

>

>Right adrenal: Cortisol, pre-ACTH: 4.4 post-ACTH: 31.1

>

> Aldosterone, pre-ACTH: 1 post-ACTH: 49

>

>Left adrenal: Cortisol, pre-ACTH: 4.7 post- ACTH: 25

>

> Aldosterone, pre-ACTH: 3 post-ACTH: 39

>

>Any thoughts, anyone?

>

>My daughter has had only a handful of the episodes, ALL after ingesting

high-sodium foods, such as an oreo-cookie blizzard from DQ (just read the

nutritional info - OMG!! 530 mg sodium in a blizzard!!!

>

>The increase in BP is never really noticed much by the drs I have been to

because it's in the normal range. Same goes for my dad and daughter. In

pregnancy, they told me an elevation of 30 points above the patient's normal is

considered high BP for the patient during pregnancy. My dad and daughter have

the same situation. Low to mid-normal BP when asymptomatic. When symptomatic, my

bp and my dad's BP can increase 20-30 points, and still be in the high normal

range ( systolic BP 120-130).

>

>I know there is a lot of variation in BP day to day and hour to hour etc, but

it seems a bit suspicious to me that all affected family members have low BPS

when asymptomatic and BPs 20-30 points higher when symptomatic. The highest

increase I have had - other than pregnancy - is about 45 points systolic, going

up to around 145 systolic. The diastolic rarely elevates much. 70's usually,

even when systolic goes up. I stopped monitoring it years ago though, after the

carcinoid " diagnosis " because I kept being told my BP was good and I didn't have

a BP problem....

>

>And then there is the whole - WOW! response to spiro and inspra...

>

>Hmmm.....

>

>Joyce in Cinci

>

May 5, 2009

have completely normal periods, no difficulty in conceiving my daughter. Due to

htn crisis in pregnancy, have had an IUD since then...

lab normals:

DHEA: 112-722 mine was 1528 NOT during AVS just during a blood draw...

aldo: 1-16

renin: 1.31-3.95

lab normals for AVS - they didn't give normals specifically for pre/post acth

stim, just for everyday life as follows:

supine 8am-10am: 3-16

upright 8am-10am: < or = 28

upright 4pm - 6pm: < or = 21

There was only one time I ever had a low potassium - I don't know what it was. I

was in college and symptoms were getting worse and I also developed a lot of

headaches and tremors. The student clinic dr told me my potassium was low and

that was what was causing the tremors and I should eat a lot of high-potassium

foods like spinach and bananas. Which I do, and haven't had a low potassium

since.

I also eat an relatively-low sodium diet - no processed foods (symptoms are much

worse on processed foods, Chinese food is the worst!!), we don't add salt when

we cook, and when recipes like bread call for salt, we reduce it. My symptoms

are much worse when I have too much salt in my diet. I eat a lot of salads,

fresh healthy organic type diet - not a vegetarian by any means, but mostly eat

fish and chicken, rarely red meat.My mom has resistant hypertension - my whole

life she has had that and she eats a low-sodium diet that makes DASH look a

littel salty...

Sorry, I digressed. No licorice. No 24 hr urine aldo done, just serum.

Pregnancy:

No difficulty conceiving, had been on calcium channel blockers to control sinus

tach prior to pregnancy. Stopped calcium channel blockers at drs recommendation

due to concerns about effects on the baby...

Have had this post-prandial fatigue since early childhood. Progressed to

exertion intolerance, sinus tach, thirst by late 20's.

Drs couldn't figure it out - didn't do much testing and told me i was fine, go

ahead and get pregnant. Just a sinus tach of unknown origin and don't drink so

much water...

Got pregnant. Switched cardiologists. New cardio thought maybe pheo - tested

normal.

Around 24 weeks gestation started developing really bizarre swelling episodes.

STarted with my left arm swelling to twice its size while out walking one day.

back down to normal in an hour. Then started the same thing with feet and legs

and especially my abdomen a few days later - I would swell so much that loose

scrub pants would become skin tight, then after several hours the swelling would

go down. No proteinuria. Docs didn't know what was wrong, put me on bedrest as a

precaution, in hospital for a couple days for observation, then home.

Post-prandial, I would have facial flushing, fatigue, rapid heartbeats, and bp

wwould go up 20 or so points. But the bedrest really helped with the swelling.

Went home for bed-rest at home, was very stabile, doing well (other than bored

out of my skull). My Ob-Gyn was concerned that I had an undiagnosed endocrine

condition as the cauase of my sinus tach and was worried that the pregnancy

could make it go haywire. So, she gave me a betamethasone injection (12mg IM)

to speed maturation of the baby's lungs in case things got worse and my baby was

born prematurely. This was about 27 weeks gestation.

12 hours after the betamethasone injection, things went to hell in a handbasket

- I ended up in ER with severe upper body flushing, BP was around 150-160

(normal for me pre-pregnancy was a systolic bp in the 90's), a massive headache

- the worst I have ever had, sinus tach, nausea, vomiting. Apparently at some

point one of the drs warned my husband that me and my baby might both die. It

was pretty hairy for awhile.

The next am they brought in the first internist to arrive at the hospital - he

took one look at my bright red face from across the room, and said " carcinoid " .

Hence, the carcinoid wild goose chase of the past 9 years...

AFter the first night, it was touch and go controlling my bp - eventually I

developed proteinuria and they called it secondary pre-eclampsia. They could

only barely control the htn, though. I was on and off mag sulfate drips and god

knows what else. Finally they transferred me to a tertiary care center because

they were sure I would deliver prematurely.

My daughter was delivered by emergency c-section at 28 weeks 6 days gestation

-didn't quite make it to the 29 week mark, we had been hoping for 32 weeks. I do

remember I had massive ascites - the ssurgeon was amazed when he opened me up -

they literally had to bail out my abdomen to get to the uterus...

After delivery, the endocrinopathy slowly but steadily calmed down. It was worst

during pregnancy than any other time, but worse during the past 9 years

post-pregnancy than it ever was before.

Post-pregnancy I couldn't even grocery shop for 30 minutes without such severe

facial flsuhing that the cashiers would ask if they should call 911. In addition

to the post-prandial symptoms, I had great difficulty with symptoms even

sitting up for a few hours, like at a computer, or long car trips etc. Really

couldn't tolerate much time on my feet. Hot showers would also really trigger

symptoms. In the early years, I would check my bp with these episodes, because

carcinoid usually causes decreased bp, and mine would always go up. I would

measure before eating and after, and it would increase by 20 or so points, but

always within normal range.

A year ago, with no carcinoid tumor found (and thus no cure) and a ticking

biological clock - I asked my doc if the adrenal nodule that showed during the

routine scanning for a carcinoid tumor could be functional and could have been

the cause of the pregnancy hypertension.

Which led to all this adrenal testing with elevation of DHEA.

Last week, my endo ran an intolerance test - using it as a stress test to mimic

the post-prandial hormonal environment and measure all the adrenal steroids and

see what is happening. My BG didn't drop as low as he would have liked - he

wanted to drop it by 50% and it only droppped 30% and took it's sweet time doing

even that much - so he may have to repeat the test with a higher dose of

insulin.

I did get a bit flushed and felt like I was in a sauna when the BG droppped to

its lowest - but don't know if we really triggered whatever happens with me

because I didn't get fatigued or sick at all - but, since I have been on inspra,

the ususual triggers don't affect me...

I can eat almost anything I want (I ate not 1, but 2 bags of chips today (the 1

oz size) and was mildly symptomatic. My daughter and husband could tell right

away when they saw me - I have been doing so well lately. They asked what

happened and I confessed to the bags of chips - for years, I have rarely eaten 2

chips let alone 2 bags - guess I was feeling invinceable). I have a much higher

level of tolerance for physical exertion, car rides are no problem, shopping -

easy, and boy does it feel good to take a hot shower after all these years!

But it all doesn't make since - 'casue those aldosterone numbers are, as you

said, low.

Wow, sorry this little novel turned out to be so long...

I can't seem to find your articles on liddle syndrome or apparent

mineralocorticoid excess... Could you point me in their direction? I looked on

the group files, and also search pubmed.org...

Thanks so much for your input and I promise to keep my future emails shorter!

Joyce in Cinci

---- lowerbp2 <lowerbp2@...> wrote:

> This is excellent. So MC blockade makes you better! This suggests that there

may be another MC present such as DOC. Do you have normal periods? Had

children?

>

> You have low renin and pretty low aldos. (need normal values for this lab

however.)

>

> Has you K ever been low?

>

> Trust you don't eat licorice every day? This can do this but aldo is usually

lower. Any 24 hour urine aldo done?

>

> The AVS adrenal aldo also seems low even after ACTH but again need normal

values and units. Is the source not in the adrenal? Can be in ovary even the

brain.

>

> Do you have Liddle's syndrome? see my review article. Ask your team. This

responses not only to MC blockers but also to triampterene.

>

> Apparent mineralocorticoid excess? see my review article.

>

> Clarence E. Grim, BS, MS, MD

>

---- lowerbp2 <lowerbp2@...> wrote:

> This is excellent. So MC blockade makes you better! This suggests that there

may be another MC present such as DOC. Do you have normal periods? Had

children?

>

> You have low renin and pretty low aldos. (need normal values for this lab

however.)

>

> Has you K ever been low?

>

> Trust you don't eat licorice every day? This can do this but aldo is usually

lower. Any 24 hour urine aldo done?

>

> The AVS adrenal aldo also seems low even after ACTH but again need normal

values and units. Is the source not in the adrenal? Can be in ovary even the

brain.

>

> Do you have Liddle's syndrome? see my review article. Ask your team. This

responses not only to MC blockers but also to triampterene.

>

> Apparent mineralocorticoid excess? see my review article.

>

> Clarence E. Grim, BS, MS, MD

>

> On Tuesday, May 05, 2009, at 02:24PM, <carcinoidnews@...> wrote:

> >Hi -

> >

> >I originally joined the group Jan 2008. I have been absent since shortly

after I joined due to some unrelated extenuating circumstances.

> >

> >I have undergone work-up and treatment for suspected carcinoid syndrome

following a hypertensive crisis in pregnancy. I had a previous history of

post-prandial fatigue since childhood.

> >

> >Glucose tolerance tests completely normal, normal insulin tests, normal

response etc. No abnormaility of glucose regulation was ever found.

> >

> >All tests for pheo negative (including urine tests performed by the NIH on

consult basis).

> >

> >No carcinoid tumor has ever been found. I have been treated with high doses

(20-30mg q 2 weeks) sandostatin with a moderate control of symptoms.

> >

> >After joining the group last year, my doctors did some screening tests for

hyperaldosteronism, which were unremarkable, and eventually found elevated

DHEA.

> >

> >Long story short, my endo started me on spiro last Dec to control the

hirsutism I also have and miracle- of- miracles, the lifelong post-prandial

fatigue virtually disappeared (except when I would forget to take a pill with a

meal). Fatigue: ranging from inability to focus or concentrate to falling asleep

with facial flushing, tachycardia, and mildly/moderately elevated BP)

> >

> >After 5 months of spiro (100mg/day), during which sando was completely

stopped, my endo switched me to Inspra.

> >

> >WOW!!!! I haven't felt this good since I was a very young child, before the

post-prandial fatigue started.

> >

> >Not sure how much closer we are to an actual diagnosis - my endo is exploring

the possibility that the elevated DHEA I have may be activating the

mineralocoticoid receptors - but at least I now have a treatment that works way

better than sando at a fraction of the cost.

> >

> >Family history:

> >My dad, my nine-year old daughter, and a niece all have the same symptoms,

and my dad has elevated DHEA as well, not as high as mine.

> >

> >Here are the results of the screening tests for PA (serum, not 24 hr urine)

> >

> >1: aldosterone 5.5 with renin 0.88 ratio = 6.25

> >2: aldosterone 5.8 with renin 0.44 ratio = 13.18

> >

> >Sample 1 was fasting, sample 2 was post-prandial.

> >

> >AVS was done to look for the source of the DHEA as I have ct scan evidence of

2 small nodules in left adrenal cortex. Despite care on the part of the

interventional radiology team to make sure that the DHEA was ordered along with

some other pre-cursor hormones I have had mild elevations of (androsterone,

pregnantriol, pregnanetriol - all non-pregnant samples) the lab (Quest) screwed

up and didn't run the DHEA etc. They did run the cortisol and aldosterone,

though.

> >

> >Results:

> >

> >Right adrenal: Cortisol, pre-ACTH: 4.4 post-ACTH: 31.1

> >

> > Aldosterone, pre-ACTH: 1 post-ACTH: 49

> >

> >Left adrenal: Cortisol, pre-ACTH: 4.7 post- ACTH: 25

> >

> > Aldosterone, pre-ACTH: 3 post-ACTH: 39

> >

> >Any thoughts, anyone?

> >

> >My daughter has had only a handful of the episodes, ALL after ingesting

high-sodium foods, such as an oreo-cookie blizzard from DQ (just read the

nutritional info - OMG!! 530 mg sodium in a blizzard!!!

> >

> >The increase in BP is never really noticed much by the drs I have been to

because it's in the normal range. Same goes for my dad and daughter. In

pregnancy, they told me an elevation of 30 points above the patient's normal is

considered high BP for the patient during pregnancy. My dad and daughter have

the same situation. Low to mid-normal BP when asymptomatic. When symptomatic, my

bp and my dad's BP can increase 20-30 points, and still be in the high normal

range ( systolic BP 120-130).

> >

> >I know there is a lot of variation in BP day to day and hour to hour etc, but

it seems a bit suspicious to me that all affected family members have low BPS

when asymptomatic and BPs 20-30 points higher when symptomatic. The highest

increase I have had - other than pregnancy - is about 45 points systolic, going

up to around 145 systolic. The diastolic rarely elevates much. 70's usually,

even when systolic goes up. I stopped monitoring it years ago though, after the

carcinoid " diagnosis " because I kept being told my BP was good and I didn't have

a BP problem....

> >

> >And then there is the whole - WOW! response to spiro and inspra...

> >

> >Hmmm.....

> >

> >Joyce in Cinci

> >

July 16, 2009

welcome back, sharon

Can love help you live longer? Find out now.

July 17, 2009

Welcome back Sharon!

Sent from AT & T's Wireless network using Mobile Email

- I'm Back

Hi Guys and Gals

This is Sharon I decided that I would be strong enough and come back to the

group cause I missed all the banter back and forth.

Just no flaming me or attacking me I take offense and it's not nice.

Sharon

July 17, 2009

Sharon! I am so glad you changed your mind sweetie! Welcome back!StacieSent via BlackBerry by AT&TFrom: " Wylie" Date: Thu, 16 Jul 2009 22:46:42 +0000<autism >Subject: Re: I'm Back Welcome back Sharon! Sent from AT & T's Wireless network using Mobile Email - I'm Back Hi Guys and Gals This is Sharon I decided that I would be strong enough and come back to the group cause I missed all the banter back and forth. Just no flaming me or attacking me I take offense and it's not nice. Sharon

July 17, 2009

Yes, welcome back. If you need to complain (and we all do) and don't want any advice, just tell us. We can listen, identify and just lend a shoulder to cry on. I know sometimes I just need to hold a pity party for myself and don't want any advice. So feel free to use us as a sounding board. We are here for you!!! , TACASanta From: Wylie <mlwpdb@...>autism Sent: Thursday, July 16, 2009 3:46:42 PMSubject: Re: I'm Back

Welcome back Sharon!

Sent from AT & T's Wireless network using Mobile Email

- I'm Back

Hi Guys and Gals

This is Sharon I decided that I would be strong enough and come back to the group cause I missed all the banter back and forth.

Just no flaming me or attacking me I take offense and it's not nice.

Sharon

July 17, 2009

Oh, Sharon

I am so glad you came back....Hugs...

Lesley

-- I'm Back

Hi Guys and GalsThis is Sharon I decided that I would be strong enough and come back to the group cause I missed all the banter back and forth.Just no flaming me or attacking me I take offense and it's not nice.Sharon

July 18, 2009

Thanks Lesley - I am gun shy right now but I needed my Devin updates and I get them here faster. Good for you on the crying for you. I know how much it gives you pleasure to know you are missed.

Sharon

From: lesley hicks <lesley_hcks@...>Subject: Re: I'm Backautism Date: Friday, July 17, 2009, 10:46 AM

Oh, Sharon

I am so glad you came back....Hugs...

Lesley

-- I'm Back

Hi Guys and GalsThis is Sharon I decided that I would be strong enough and come back to the group cause I missed all the banter back and forth.Just no flaming me or attacking me I take offense and it's not nice.Sharon

July 18, 2009

Hi Sharon! Welcome back! Lois

Re: I'm Back

July 19, 2009

Welcome back, Sharon, you were missed. How are things going?

Karac had a great week at camp and I had a lot of fun with my girls. They dragged me to get my first pedicure; it was so much fun that

I went back and had my fingernails done. LOL,LOL,Love and blessings, Pat K

I'm Back

Hi Guys and Gals

This is Sharon I decided that I would be strong enough and come back to the group cause I missed all the banter back and forth.

Just no flaming me or attacking me I take offense and it's not nice.

Sharon

What's for dinner tonight? Find quick and easy dinner ideas for any occasion.

September 12, 2010

Wow, Sharon, you and Dan have had a rough week; it can only get better.

Karac had a good first week of school. There is a new girl in his

class who likes him. He came home and told his mother, " I have a girl

friend " . Welcome back. Love and blessings, Pat K

I'm back

First 3 weeks of school are here and gone mid-terms come out next week

- it once again has been a rough start for Dan.

Day before school even started - he could not get his new lock opened -

huge meltdown came including hitting himself and the wall with his

head. His homeroom teacher tried to help him but to no avail he just

couldn't do it, so we sent him to the car - by the time I got there he

finally got it.

First Tuesday of school - during PE he gets hit in the face with a

softball, no damage done to him except his glasses, he never wants to

play softball again.

Last Week - he overheard a boy muttering something about someone being

an idiot - he took it personally - I called the teacher they say no he

didn't mean Danny I disagreed - we moved the other child from sitting

next to him.

Good things - he has gotten mostly A's and B's on papers - an F and a

D-in computers of all things - he just was going to fast in my opinion.

I will be anxious to see the reports.

Me - back is still hurting although not as bad - finally got my shot in

my iliosacral joint hurt so bad that night I ended up in the emergency

room getting morphine shots, next day I couldn't do a thing, now I am

up and moving and doing okay although yesterday and today have been

pain killer needed days - the tens unit didn't help

And to add injury to injury possibly tore my rotater cuff - asked for

PT to make it less tight - ended up in Urgent Care was in so much pain

- MRI scheduled on Tuesday.

To say the least it has been eventful few weeks of school and home but

I miss everybody and their stories so I am going to come back and try

to keep up.

Sharon

mom to Danny - Aspergers, PDD-NOS, hypotonia, hyperlexia, sensory

integration disorder and global apraxia.

September 14, 2010

Hi , glad you are feeling somewhat better and back with the group.

For all the good steroids do they can really take their toll. I was on

high doses years ago and my heart goes out to you. I also am back. Joe

and I got home late Saturday from our trip to Montana and surrounding

places. 's husband's Grandma and Grandpa own a ranch near 3 Forks

Montana and this summer was a family vacation there. His grandparents

stay for the summer in a beautiful one large room cabin. It could be

featured in Log Home Living magazine and his aunt and uncle stay in the

big farmhouse. There are a few guest cabins and a cabin housing the bath

and laundry facilities. Joe and I had a cabin, April and Jeff had

another and and Jon a third. Needless to say it was great being

with everyone. Joe and I left home early and did a couple of days at

Yellowstone and after the kids left Montana and headed home we went on to

Glacier for a few days. It was an exhausting trip and today is the first

day I feel like myself. I miss the pure, crisp mountain air but the

beauty of the Midwest is apparent in the lush greenery all around. It

was strange to see trees lining the street after a few weeks of mountains

and sky. My thought for the day??? There's no place like home. Have a

great day and keep breathing.

Chris

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September 15, 2010

thanks for sharing sounds marvelous!

God's Blessings

Rettig (Army Mom of 2)

Re: I'm BACK