fatigue

[Guest guest]

Amity, how does the juice taste? Good?

Pam

Re:Fatigue

I was a HUGE skeptic of the different exotic juices that are out there, because they all seem to be sold in pyramid type schemes. So, I've passed on them even though I've had so many of my friends sing their praises. Well, I was in Akins health food store a few weeks ago with my husband - we haven't tried a whole lot of natural and vitamin supplement type treatments, but one of our neighbors had recommended something for his allergies. While we were there, I saw a whole shelf full of Mangosteen juice. It is expensive - the range for a 32 oz. bottle depending on the brand, was $17 to $26. I got the $17 stuff, still extremely skeptic but figured I'd try it since so many people had so many good things to say about it. I drink one oz. in the morning and one oz. in the evening, and I have had more energy in the past couple weeks than I have had in the 2 years I've been suffering with Fibro. I know that different things work for different people, but for me, this was worth the money. I have only had one major fatigue "crash" in the past 2 weeks - and that was after over-exherting myself for a couple days (which I tend to do when I'm feeling overly good). Amity

Posted by: "hardcase125" sherylwarrco hardcase125

Tue Sep 23, 2008 6:40 am (PDT) Just wondering what you all have found to be helpful for the extreme fatigue from fibro. I have gotten the pain pretty much under control but this fatigue is riduculous. Thanks for any suggestions. I am already doing b-12 shots and Vit-d and multi-vitamins.

[Guest guest]

It's pretty good. It tastes kind of like a sweet cranberry juice. It's thicker than regular juice. It took me a day or so to get used to the consistency, but I like it. Posted by: "Pam Horne"

pmarshall@...

auntiepam77

Tue Sep 30, 2008 3:55 pm (PDT)

Amity, how does the juice taste? Good?

Pam

[Guest guest]

Welcome Maureen. Would you mind sharing a typical menu for you during the

week?

_____

From: [mailto: ] On Behalf Of

bluequilter1

Sent: Sunday, November 23, 2008 4:18 PM

Subject: Fatigue

I am new to this group, also. My husband and I have been on the

blood type diet for over two years. We went on it to see if we could

overcome the dreadful fatigue we had. Between the two of us, we

didn't have the energy to squash a grape.

My husband 'recovered' quickly, once he started eating for his blood

type. However, It was over three weeks before I felt the least bit

improved. I guess I was much farther 'in the hole' than he was.

After 25 months on the diet, we are firm believers in it. We have

both lost considerable weight, sleep a lot better and have a whole

lot more energy. One of the best things for me is that I am not

always craving things. I used to want 'something' but I never knew

what it was I wanted or needed to stop the terrible cravings. And I

ate and ate and ate.

For the most part, we both stay on our individual diets (we run a

cafeteria as he is an A+ secretor and I am an O+ non-secretor).

I have discovered that one swallow of coffee causes me just as much

trouble as one cup; a small portion of anything that is an avoid for

me is big trouble. For both of us, we need to stick to the diet 100

per cent, 100 per cent of the time. What seems to be a 'small cheat'

can and does cause us as much trouble as a 'whole hog cheat'.

Since we both feel so much better all of the time, it boggles our

minds that we would even think of going off the diet. But, we do....

Maureen

[Guest guest]

Hi Megra0409,

I'm new to the group as well, and have had my diagnosis for about 18 months. 

Since joinging three days ago, I've learned the supplements I'm on are cancer

causing, that the fatigue I have is normal, that the pain I experience in my

joints is from muscular problems, and basically there isn't a lot that can be

done for sufferrs.

It's good to be able to chat to the others here about what's normal, and what

isn't - but I am one of those " fix it please " people, and can't believe there

isn't some sort of solution.  Both of my adrenal glands are enlarged and

therefore they won't operate.  There are small benign tumours in my kidneys as

well.

I felt fantastic before the diagnosis although my blood pressure was about

211/113 on average.  I was at a very normal weight (73kilos) and I had

extremely high energy levels.   I too understand the depression, as I was far

more mobile and happy without the diagnosis.

How do people deal with this?

Sue

________________________________

From: megra0409 <megra0409@...>

hyperaldosteronism

Sent: Sunday, 14 December, 2008 8:11:45 PM

Subject: Fatigue

Hi All,

I am so pleased to have found this group as I feel very alone in battling

this condition. 3 months ago after adrenal vein sampling I was diagnosed

with PHA as a result of bilateral hyperplasia of the adrenal glands. I am

currently on 36mg Spironolactone and 16 mg Atacand but remain constantly

fatigued. My renal specialist who is treating me for the PHA (as I have a

unilateral right kidney) keeps telling me I will start feeling better, but

three months after taking this medication I am feeling only slightly

improved. I am beginning to understand how people get depression with this

condition. I would love to hear other's thoughts on my condition.

Many thanks

Megra0409

[Guest guest]

Please give us more details

36 my of Spiro is a very low dose

Atavand will not work in PA

Be certain you are DASHing to minimize néed for mess

Sent from my iPhone

CE Grim MD

On Dec 14, 2008, at 1:11 AM, megra0409 <megra0409@...> wrote:

> Hi All,

>

> I am so pleased to have found this group as I feel very alone in

> battling

> this condition. 3 months ago after adrenal vein sampling I was

> diagnosed

> with PHA as a result of bilateral hyperplasia of the adrenal glands.

> I am

> currently on 36mg Spironolactone and 16 mg Atacand but remain

> constantly

> fatigued. My renal specialist who is treating me for the PHA (as I

> have a

> unilateral right kidney) keeps telling me I will start feeling

> better, but

> three months after taking this medication I am feeling only slightly

> improved. I am beginning to understand how people get depression

> with this

> condition. I would love to hear other's thoughts on my condition.

>

> Many thanks

>

> Megra0409

>

>

[Guest guest]

Read my article on evolution of PA and take to all Drs who missed your

Dx

Sent from my iPhone

CE Grim MD

On Dec 14, 2008, at 1:11 AM, megra0409 <megra0409@...> wrote:

> Hi All,

>

> I am so pleased to have found this group as I feel very alone in

> battling

> this condition. 3 months ago after adrenal vein sampling I was

> diagnosed

> with PHA as a result of bilateral hyperplasia of the adrenal glands.

> I am

> currently on 36mg Spironolactone and 16 mg Atacand but remain

> constantly

> fatigued. My renal specialist who is treating me for the PHA (as I

> have a

> unilateral right kidney) keeps telling me I will start feeling

> better, but

> three months after taking this medication I am feeling only slightly

> improved. I am beginning to understand how people get depression

> with this

> condition. I would love to hear other's thoughts on my condition.

>

> Many thanks

>

> Megra0409

>

>

[Guest guest]

Prior to diagnosis following having adrenal vein sampling procedures, and prior

to the commencement of treatment for my PHA my BP generally sat around 210/115.

I was incredibly active and had tremendous energy levels. I am at least happy to

report that I have not had any weight gain (thank God), but I think that is

because I make sure I exercise for 30 minutes every day. 10 years ago I had a

total colectomy due to bowel obstruction and whilst I didn’t have to have a

colostomy bag, I need to exercise every day as my small bowel (now doing the job

of the two organs) only seems to cope if I exercise. This has been a challenge

though, as the very last thing I feel like doing is exercising when everything

aches and I am bone tired and perhaps I am lucky having such a health incentive

to force me to exercise.

The Doctors have advised me that they are reluctant to operate as both my

adrenals are causing the PHA, and I have been told that even if they remove one

adrenal, over a short period of time the remaining adrenal will adjust itself to

release the same amount of aldosterone as the two adrenals were producing. I

have also been told that I am a surgical nightmare as I only have one kidney,

yet two adrenals, and the left adrenal is not where it should be. I just feel

like I keep facing walls everywhere I turn.

But I guess I am just wanting to know if things are going to get better or not?

My Doctor reassures me that my body should start to adjust to the medications

and I should start to feel better, but I do believe I am her only PHA patient so

I am not sure who or what she is basing her response on. You know I can start

some days feeling well and energetic, but within a couple of hours I am simply

dragging myself around trying to cope. I have also found I am not as good at

managing my stress levels as I once was, nor is my memory what it used to be.

I am 42 years of age and work in a government role dealing with industry and am

struggling so much with my job. My Dr has put me on a restricted duties medical

certificate so I can’t actually work outside the office at this time, and

naturally this is creating further stress as when will I be able to do so and

how long will my employer tolerate my restricted duties???

I am currently only on 37mg of Spironolactone to suppress the adrenals (taken as

25mg mid morning and 12.5 mg in the afternoon), and I also take Atacand to

reduce my BP levels. Whilst my BP now appears to be back down to lower levels,

I feel so poorly and I know that emotionally I am becoming a bit of a wreck,

which is simply not the person I used to be. I am considering now getting a

second opinion from an endocrinologist, as my treating specialist is a renal

physician as my regular kidney function tests (started only 6 months ago) always

come back in the highest range for the creatinine levels showing that the sole

kidney is struggling. Interestingly my uric acid results are always low.

I just want to know if others did improve over time and did adjust to their

meds, as my Doctor says that the reason I feel so shocking is a combination of

my body now operating on much lower BP levels, the disease which has fatigue

side effects and the medication which also has fatigue side effects. If I am

not going to improve then I need to learn to deal with that and toughen myself

up, but at the moment I feel like I am on an emotional rollercoaster and can’t

see whether there is dip or a hill ahead of me...

Any advice would be greatly appreciated.

Kindest regards to all.

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Lowerbp2

Sent: Monday, 15 December 2008 9:29 AM

hyperaldosteronism

Subject: Re: Fatigue

Please give us more details

36 my of Spiro is a very low dose

Atavand will not work in PA

Be certain you are DASHing to minimize néed for mess

Sent from my iPhone

CE Grim MD

On Dec 14, 2008, at 1:11 AM, megra0409 <megra0409@...

<mailto:megra0409%40bigpond.com> > wrote:

> Hi All,

>

> I am so pleased to have found this group as I feel very alone in

> battling

> this condition. 3 months ago after adrenal vein sampling I was

> diagnosed

> with PHA as a result of bilateral hyperplasia of the adrenal glands.

> I am

> currently on 36mg Spironolactone and 16 mg Atacand but remain

> constantly

> fatigued. My renal specialist who is treating me for the PHA (as I

> have a

> unilateral right kidney) keeps telling me I will start feeling

> better, but

> three months after taking this medication I am feeling only slightly

> improved. I am beginning to understand how people get depression

> with this

> condition. I would love to hear other's thoughts on my condition.

>

> Many thanks

>

> Megra0409

>

>

[Guest guest]

With only one kidney can you give us the numbers so we know exactly

what we are dealing with.

Do they think you were born with only one of did it die from another

disease?

What is your history of low K?

Always send BP numbers not just better or worse.

Also happy to consult with your Dr to help in any way I can.

CE Grim MD

On Dec 15, 2008, at 3:58 AM, megra0409 wrote:

> Prior to diagnosis following having adrenal vein sampling

> procedures, and prior to the commencement of treatment for my PHA

> my BP generally sat around 210/115. I was incredibly active and had

> tremendous energy levels. I am at least happy to report that I have

> not had any weight gain (thank God), but I think that is because I

> make sure I exercise for 30 minutes every day. 10 years ago I had a

> total colectomy due to bowel obstruction and whilst I didn’t have

> to have a colostomy bag, I need to exercise every day as my small

> bowel (now doing the job of the two organs) only seems to cope if I

> exercise. This has been a challenge though, as the very last thing

> I feel like doing is exercising when everything aches and I am bone

> tired and perhaps I am lucky having such a health incentive to

> force me to exercise.

>

> The Doctors have advised me that they are reluctant to operate as

> both my adrenals are causing the PHA, and I have been told that

> even if they remove one adrenal, over a short period of time the

> remaining adrenal will adjust itself to release the same amount of

> aldosterone as the two adrenals were producing. I have also been

> told that I am a surgical nightmare as I only have one kidney, yet

> two adrenals, and the left adrenal is not where it should be. I

> just feel like I keep facing walls everywhere I turn.

>

> But I guess I am just wanting to know if things are going to get

> better or not? My Doctor reassures me that my body should start to

> adjust to the medications and I should start to feel better, but I

> do believe I am her only PHA patient so I am not sure who or what

> she is basing her response on. You know I can start some days

> feeling well and energetic, but within a couple of hours I am

> simply dragging myself around trying to cope. I have also found I

> am not as good at managing my stress levels as I once was, nor is

> my memory what it used to be.

>

> I am 42 years of age and work in a government role dealing with

> industry and am struggling so much with my job. My Dr has put me on

> a restricted duties medical certificate so I can’t actually work

> outside the office at this time, and naturally this is creating

> further stress as when will I be able to do so and how long will my

> employer tolerate my restricted duties???

>

> I am currently only on 37mg of Spironolactone to suppress the

> adrenals (taken as 25mg mid morning and 12.5 mg in the afternoon),

> and I also take Atacand to reduce my BP levels. Whilst my BP now

> appears to be back down to lower levels, I feel so poorly and I

> know that emotionally I am becoming a bit of a wreck, which is

> simply not the person I used to be. I am considering now getting a

> second opinion from an endocrinologist, as my treating specialist

> is a renal physician as my regular kidney function tests (started

> only 6 months ago) always come back in the highest range for the

> creatinine levels showing that the sole kidney is struggling.

> Interestingly my uric acid results are always low.

>

> I just want to know if others did improve over time and did adjust

> to their meds, as my Doctor says that the reason I feel so shocking

> is a combination of my body now operating on much lower BP levels,

> the disease which has fatigue side effects and the medication which

> also has fatigue side effects. If I am not going to improve then I

> need to learn to deal with that and toughen myself up, but at the

> moment I feel like I am on an emotional rollercoaster and can’t see

> whether there is dip or a hill ahead of me...

>

> Any advice would be greatly appreciated.

>

> Kindest regards to all.

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Lowerbp2

> Sent: Monday, 15 December 2008 9:29 AM

> hyperaldosteronism

> Subject: Re: Fatigue

>

> Please give us more details

>

> 36 my of Spiro is a very low dose

> Atavand will not work in PA

>

> Be certain you are DASHing to minimize néed for mess

>

> Sent from my iPhone

>

> CE Grim MD

>

> On Dec 14, 2008, at 1:11 AM, megra0409

> <megra0409@...<mailto:megra0409%40bigpond.com> > wrote:

>

> > Hi All,

> >

> > I am so pleased to have found this group as I feel very alone in

> > battling

> > this condition. 3 months ago after adrenal vein sampling I was

> > diagnosed

> > with PHA as a result of bilateral hyperplasia of the adrenal glands.

> > I am

> > currently on 36mg Spironolactone and 16 mg Atacand but remain

> > constantly

> > fatigued. My renal specialist who is treating me for the PHA (as I

> > have a

> > unilateral right kidney) keeps telling me I will start feeling

> > better, but

> > three months after taking this medication I am feeling only slightly

> > improved. I am beginning to understand how people get depression

> > with this

> > condition. I would love to hear other's thoughts on my condition.

> >

> > Many thanks

> >

> > Megra0409

> >

> >

[Guest guest]

It appears that I was only born with the one kidney and I was found to be

this way when they did the total colectomy 10 years ago. Before that I had

no idea that I only had the right kidney and it is hypertrophied due to

being singular. I do however have two adrenal glands and interestingly the

left adrenal gland (whilst there is no left kidney) is particularly

hypertrophied

I have had several admissions this year to hospital with low potassium, and

each time it comes it is at a time when I am run down with this damn PHA,

and that appears to knock out my already difficult gastro function and

causes diarrhoea (which I can get easily as I do not have the large bowel).

Naturally though the doctors do not want me to take a potassium supplement

due to the spironolactone, however my specialist tells me to take at least

one Slow K tablet orally when I get diarrhoea to sustain my potassium

levels. Other than these 4-5 episodes of low potassium this year, my levels

remain fairly consistent around 4.5.

After three months of treatment on the spironolactone with dosages starting

at 100mg per day down to 25 mg, then up to 37.5 mg and as of yesterday up to

50mg per day, my BP has reduced to around 137/75. I also remain on 16mg of

Atacand daily. Do you think I should be seeing an endocrinologist for

management of this disease or stay remaining with my renal physician? As I

said my Creatinine levels do fluctuate but the average appears to be 95-100.

Thank you for your time in responding.

Re: Fatigue

>

> Please give us more details

>

> 36 my of Spiro is a very low dose

> Atavand will not work in PA

>

> Be certain you are DASHing to minimize néed for mess

>

> Sent from my iPhone

>

> CE Grim MD

>

> On Dec 14, 2008, at 1:11 AM, megra0409

> <megra0409@...<mailto:megra0409%40bigpond.com> > wrote:

>

> > Hi All,

> >

> > I am so pleased to have found this group as I feel very alone in

> > battling

> > this condition. 3 months ago after adrenal vein sampling I was

> > diagnosed

> > with PHA as a result of bilateral hyperplasia of the adrenal glands.

> > I am

> > currently on 36mg Spironolactone and 16 mg Atacand but remain

> > constantly

> > fatigued. My renal specialist who is treating me for the PHA (as I

> > have a

> > unilateral right kidney) keeps telling me I will start feeling

> > better, but

> > three months after taking this medication I am feeling only slightly

> > improved. I am beginning to understand how people get depression

> > with this

> > condition. I would love to hear other's thoughts on my condition.

> >

> > Many thanks

> >

> > Megra0409

> >

> >

[Guest guest]

Hi Carol and Dr Grim,

I truly appreciate your assistance and if you could ask Dr Stowasser who he

would recommend in Sydney I would greatly appreciate it. I most certainly am

taking some comfort knowing we are all in this together.

Warm regards

Re: Fatigue

>>>>

>>>> Please give us more details

>>>>

>>>> 36 my of Spiro is a very low dose

>>>> Atavand will not work in PA

>>>>

>>>> Be certain you are DASHing to minimize néed for mess

>>>>

>>>> Sent from my iPhone

>>>>

>>>> CE Grim MD

>>>>

>>>> On Dec 14, 2008, at 1:11 AM, megra0409

>>>> <megra0409@... <mailto:megra0409%40bigpond.com>

>>>>

>> <mailto:megra0409%40bigpond.com> > wrote:

>>

>>>>> Hi All,

>>>>>

>>>>> I am so pleased to have found this group as I feel very alone in

>>>>> battling

>>>>> this condition. 3 months ago after adrenal vein sampling I was

>>>>> diagnosed

>>>>> with PHA as a result of bilateral hyperplasia of the adrenal

>>>>>

>>> glands.

>>>

>>>>> I am

>>>>> currently on 36mg Spironolactone and 16 mg Atacand but remain

>>>>> constantly

>>>>> fatigued. My renal specialist who is treating me for the PHA

>>>>>

>> (as I

>>

>>>>> have a

>>>>> unilateral right kidney) keeps telling me I will start feeling

>>>>> better, but

>>>>> three months after taking this medication I am feeling only

>>>>>

>>> slightly

>>>

>>>>> improved. I am beginning to understand how people get depression

>>>>> with this

>>>>> condition. I would love to hear other's thoughts on my

>>>>>

>> condition.

>>

>>>>> Many thanks

>>>>>

>>>>> Megra0409

>>>>>

>>>>>

[Guest guest]

Dr Grim could you also please send me a link to your article you note below,

as I will take it to my specialist tomorrow.

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Lowerbp2

Sent: Monday, 15 December 2008 9:32 AM

hyperaldosteronism

Subject: Re: Fatigue

Read my article on evolution of PA and take to all Drs who missed your

Dx

Sent from my iPhone

CE Grim MD

On Dec 14, 2008, at 1:11 AM, megra0409 <megra0409@...

<mailto:megra0409%40bigpond.com> > wrote:

> Hi All,

>

> I am so pleased to have found this group as I feel very alone in

> battling

> this condition. 3 months ago after adrenal vein sampling I was

> diagnosed

> with PHA as a result of bilateral hyperplasia of the adrenal glands.

> I am

> currently on 36mg Spironolactone and 16 mg Atacand but remain

> constantly

> fatigued. My renal specialist who is treating me for the PHA (as I

> have a

> unilateral right kidney) keeps telling me I will start feeling

> better, but

> three months after taking this medication I am feeling only slightly

> improved. I am beginning to understand how people get depression

> with this

> condition. I would love to hear other's thoughts on my condition.

>

> Many thanks

>

> Megra0409

>

>

[Guest guest]

Go to our files and you can download it

Evolu of PA or Grim evolution of

PA

Sent from my iPhone

CE Grim MD

On Dec 15, 2008, at 11:28 PM, megra0409 <megra0409@...> wrote:

> Dr Grim could you also please send me a link to your article you

> note below,

> as I will take it to my specialist tomorrow.

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Lowerbp2

> Sent: Monday, 15 December 2008 9:32 AM

> hyperaldosteronism

> Subject: Re: Fatigue

>

> Read my article on evolution of PA and take to all Drs who missed your

> Dx

>

> Sent from my iPhone

>

> CE Grim MD

>

> On Dec 14, 2008, at 1:11 AM, megra0409 <megra0409@...

> <mailto:megra0409%40bigpond.com> > wrote:

>

> > Hi All,

> >

> > I am so pleased to have found this group as I feel very alone in

> > battling

> > this condition. 3 months ago after adrenal vein sampling I was

> > diagnosed

> > with PHA as a result of bilateral hyperplasia of the adrenal glands.

> > I am

> > currently on 36mg Spironolactone and 16 mg Atacand but remain

> > constantly

> > fatigued. My renal specialist who is treating me for the PHA (as I

> > have a

> > unilateral right kidney) keeps telling me I will start feeling

> > better, but

> > three months after taking this medication I am feeling only slightly

> > improved. I am beginning to understand how people get depression

> > with this

> > condition. I would love to hear other's thoughts on my condition.

> >

> > Many thanks

> >

> > Megra0409

> >

> >

[Guest guest]

I just sent Dr S an email also.

Tell him I said hello

Sent from my iPhone

CE Grim MD

On Dec 15, 2008, at 10:26 PM, Carol Christie <carolch@...> wrote:

> Hello megra0409

> I will be having my first appointment with Dr Stowasser this Thursday.

> Would you like me to ask him for the name of someone in Sydney? I live

> about 50kms west of Brisbane.

> So sorry to hear how bad you are feeling, There is some comfort here

> on

> this board, as we know we are not altogether alone in these health

> struggles.

> Warm regards

> Carol

>

>

> Clarence Grim wrote:

>> I recommend Dr. Judy Whitworth a Nephrologist and HTHologist or the

>> group in Brisbane. I spent a year in Melbourne in 1983 doing salt

>> research and know most of the HTN Drs who were there at that time.

>>

>> Dr. Tom Stowasser would be the one in Brisbane. I will talk to him

>> to see who he recommends in Sydney. Someone in our group is to see

>> him soon.

>>

>> CE Grim MD

>>

>>

>> On Dec 15, 2008, at 7:26 PM, megra0409 wrote:

>>

>>

>>> I live in Sydney Australia and I am not aware of ever having high

>>> K. IF you happen to know of any specialist in the Sydney area or

>>> Australia, I would dearly love their names so I can organise to see

>>> them for a review.

>>>

>>> From: hyperaldosteronism

>>> [mailto:hyperaldosteronism ] On Behalf Of Lowerbp2

>>> Sent: Tuesday, 16 December 2008 12:21 PM

>>> hyperaldosteronism

>>> Subject: Re: Fatigue

>>>

>>> You need to see someone who is VERY familiar with following PA pts

>>> Where do you live?

>>> Has K ever been high

>>>

>>> Sent from my iPhone

>>>

>>> CE Grim MD

>>>

>>> On Dec 15, 2008, at 6:30 PM, megra0409

>>> <megra0409@...<mailto:megra0409%40bigpond.com> > wrote:

>>>

>>>

>>>> It appears that I was only born with the one kidney and I was found

>>>> to be

>>>> this way when they did the total colectomy 10 years ago. Before

>>>> that

>>>> I had

>>>> no idea that I only had the right kidney and it is hypertrophied

>>>> due

>>>> to

>>>> being singular. I do however have two adrenal glands and

>>>> interestingly the

>>>> left adrenal gland (whilst there is no left kidney) is particularly

>>>> hypertrophied

>>>>

>>>> I have had several admissions this year to hospital with low

>>>> potassium, and

>>>> each time it comes it is at a time when I am run down with this

>>>> damn

>>>> PHA,

>>>> and that appears to knock out my already difficult gastro

>>>>

>>> function and

>>>

>>>> causes diarrhoea (which I can get easily as I do not have the large

>>>> bowel).

>>>> Naturally though the doctors do not want me to take a potassium

>>>> supplement

>>>> due to the spironolactone, however my specialist tells me to take

>>>> at

>>>> least

>>>> one Slow K tablet orally when I get diarrhoea to sustain my

>>>>

>>> potassium

>>>

>>>> levels. Other than these 4-5 episodes of low potassium this year,

>>>> my

>>>> levels

>>>> remain fairly consistent around 4.5.

>>>>

>>>> After three months of treatment on the spironolactone with dosages

>>>> starting

>>>> at 100mg per day down to 25 mg, then up to 37.5 mg and as of

>>>> yesterday up to

>>>> 50mg per day, my BP has reduced to around 137/75. I also remain on

>>>> 16mg of

>>>> Atacand daily. Do you think I should be seeing an endocrinologist

>>>>

>>> for

>>>

>>>> management of this disease or stay remaining with my renal

>>>> physician? As I

>>>> said my Creatinine levels do fluctuate but the average appears to

>>>> be

>>>> 95-100.

>>>>

>>>> Thank you for your time in responding.

>>>>

>>>> Re: Fatigue

>>>>>

>>>>> Please give us more details

>>>>>

>>>>> 36 my of Spiro is a very low dose

>>>>> Atavand will not work in PA

>>>>>

>>>>> Be certain you are DASHing to minimize néed for mess

>>>>>

>>>>> Sent from my iPhone

>>>>>

>>>>> CE Grim MD

>>>>>

>>>>> On Dec 14, 2008, at 1:11 AM, megra0409

>>>>> <megra0409@... <mailto:megra0409%40bigpond.com>

>>>>>

>>> <mailto:megra0409%40bigpond.com> > wrote:

>>>

>>>>>> Hi All,

>>>>>>

>>>>>> I am so pleased to have found this group as I feel very alone in

>>>>>> battling

>>>>>> this condition. 3 months ago after adrenal vein sampling I was

>>>>>> diagnosed

>>>>>> with PHA as a result of bilateral hyperplasia of the adrenal

>>>>>>

>>>> glands.

>>>>

>>>>>> I am

>>>>>> currently on 36mg Spironolactone and 16 mg Atacand but remain

>>>>>> constantly

>>>>>> fatigued. My renal specialist who is treating me for the PHA

>>>>>>

>>> (as I

>>>

>>>>>> have a

>>>>>> unilateral right kidney) keeps telling me I will start feeling

>>>>>> better, but

>>>>>> three months after taking this medication I am feeling only

>>>>>>

>>>> slightly

>>>>

>>>>>> improved. I am beginning to understand how people get depression

>>>>>> with this

>>>>>> condition. I would love to hear other's thoughts on my

>>>>>>

>>> condition.

>>>

>>>>>> Many thanks

>>>>>>

>>>>>> Megra0409

>>>>>>

>>>>>>

[Guest guest]

I am closer to Stanford. I have seen the doc at UCSF, Dr. Duh prior to my

AVS before going to Mayo. That was after Stanford mixed me up with another

patient in the hospital and game me heart meds of another patient. I havent

looked into any endos there since.

Best,

Farah

On Mon, Dec 15, 2008 at 8:00 PM, Clarence Grim <lowerbp2@...> wrote:

> I know of no one there I can recommend but there must be some.

> Have you looked at Stanford or UCSF?

>

> Dave seemed to have found a good team.

>

> Again I stand ready to train your local Docs as I have trained many.

>

> CE Grim MD

>

> On Dec 15, 2008, at 7:59 PM, Farah Rahbar wrote:

>

> > Is there such a doctor anywhere?

> > Dr. Grim, you are the only one I can trust after 5 years who knows

> > something

> > about PA. I am yet to meet a doctor who knows what he/she is

> > talking about

> > in treating PA patients. At least in North Cal such a thing does

> > not exist.

> >

> > Best,

> > Farah

> >

> > On Mon, Dec 15, 2008 at 5:21 PM, Lowerbp2

<lowerbp2@...<lowerbp2%40mac.com>>

> wrote:

> >

> > > You need to see someone who is VERY familiar with following PA pts

> > > Where do you live?

> > > Has K ever been high

> > >

> > >

> > > Sent from my iPhone

> > >

> > > CE Grim MD

> > >

> > > On Dec 15, 2008, at 6:30 PM, megra0409

> > <megra0409@... <megra0409%40bigpond.com><megra0409%40bigpond.com

> >>

>

> > > wrote:

> > >

> > > > It appears that I was only born with the one kidney and I was

> > found

> > > > to be

> > > > this way when they did the total colectomy 10 years ago. Before

> > that

> > > > I had

> > > > no idea that I only had the right kidney and it is

> > hypertrophied due

> > > > to

> > > > being singular. I do however have two adrenal glands and

> > > > interestingly the

> > > > left adrenal gland (whilst there is no left kidney) is

> > particularly

> > > > hypertrophied

> > > >

> > > > I have had several admissions this year to hospital with low

> > > > potassium, and

> > > > each time it comes it is at a time when I am run down with this

> > damn

> > > > PHA,

> > > > and that appears to knock out my already difficult gastro

> > function and

> > > > causes diarrhoea (which I can get easily as I do not have the

> > large

> > > > bowel).

> > > > Naturally though the doctors do not want me to take a potassium

> > > > supplement

> > > > due to the spironolactone, however my specialist tells me to

> > take at

> > > > least

> > > > one Slow K tablet orally when I get diarrhoea to sustain my

> > potassium

> > > > levels. Other than these 4-5 episodes of low potassium this

> > year, my

> > > > levels

> > > > remain fairly consistent around 4.5.

> > > >

> > > > After three months of treatment on the spironolactone with dosages

> > > > starting

> > > > at 100mg per day down to 25 mg, then up to 37.5 mg and as of

> > > > yesterday up to

> > > > 50mg per day, my BP has reduced to around 137/75. I also remain on

> > > > 16mg of

> > > > Atacand daily. Do you think I should be seeing an

> > endocrinologist for

> > > > management of this disease or stay remaining with my renal

> > > > physician? As I

> > > > said my Creatinine levels do fluctuate but the average appears

> > to be

> > > > 95-100.

> > > >

> > > > Thank you for your time in responding.

> > > >

> > > > Re: Fatigue

> > > > >

> > > > > Please give us more details

> > > > >

> > > > > 36 my of Spiro is a very low dose

> > > > > Atavand will not work in PA

> > > > >

> > > > > Be certain you are DASHing to minimize néed for mess

> > > > >

> > > > > Sent from my iPhone

> > > > >

> > > > > CE Grim MD

> > > > >

> > > > > On Dec 14, 2008, at 1:11 AM, megra0409

> > > > > <megra0409@... <megra0409%40bigpond.com> <megra0409%

> 40bigpond.com><mailto:

>

> > > megra0409%40bigpond.com <megra0409%2540bigpond.com>> > wrote:

> > > > >

> > > > > > Hi All,

> > > > > >

> > > > > > I am so pleased to have found this group as I feel very

> > alone in

> > > > > > battling

> > > > > > this condition. 3 months ago after adrenal vein sampling I was

> > > > > > diagnosed

> > > > > > with PHA as a result of bilateral hyperplasia of the adrenal

> > > > glands.

> > > > > > I am

> > > > > > currently on 36mg Spironolactone and 16 mg Atacand but remain

> > > > > > constantly

> > > > > > fatigued. My renal specialist who is treating me for the

> > PHA (as I

> > > > > > have a

> > > > > > unilateral right kidney) keeps telling me I will start feeling

> > > > > > better, but

> > > > > > three months after taking this medication I am feeling only

> > > > slightly

> > > > > > improved. I am beginning to understand how people get

> > depression

> > > > > > with this

> > > > > > condition. I would love to hear other's thoughts on my

> > condition.

> > > > > >

> > > > > > Many thanks

> > > > > >

> > > > > > Megra0409

> > > > > >

> > > > > >

[Guest guest]

Thanks ever so much.

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Lowerbp2

Sent: Tuesday, 16 December 2008 5:40 PM

hyperaldosteronism

Subject: Re: Fatigue

I just sent Dr S an email also.

Tell him I said hello

Sent from my iPhone

CE Grim MD

On Dec 15, 2008, at 10:26 PM, Carol Christie <carolch@...

<mailto:carolch%40gil.com.au> > wrote:

> Hello megra0409

> I will be having my first appointment with Dr Stowasser this Thursday.

> Would you like me to ask him for the name of someone in Sydney? I live

> about 50kms west of Brisbane.

> So sorry to hear how bad you are feeling, There is some comfort here

> on

> this board, as we know we are not altogether alone in these health

> struggles.

> Warm regards

> Carol

>

>

> Clarence Grim wrote:

>> I recommend Dr. Judy Whitworth a Nephrologist and HTHologist or the

>> group in Brisbane. I spent a year in Melbourne in 1983 doing salt

>> research and know most of the HTN Drs who were there at that time.

>>

>> Dr. Tom Stowasser would be the one in Brisbane. I will talk to him

>> to see who he recommends in Sydney. Someone in our group is to see

>> him soon.

>>

>> CE Grim MD

>>

>>

>> On Dec 15, 2008, at 7:26 PM, megra0409 wrote:

>>

>>

>>> I live in Sydney Australia and I am not aware of ever having high

>>> K. IF you happen to know of any specialist in the Sydney area or

>>> Australia, I would dearly love their names so I can organise to see

>>> them for a review.

>>>

>>> From: hyperaldosteronism

<mailto:hyperaldosteronism%40>

>>> [mailto:hyperaldosteronism

<mailto:hyperaldosteronism%40> ] On Behalf Of Lowerbp2

>>> Sent: Tuesday, 16 December 2008 12:21 PM

>>> hyperaldosteronism

<mailto:hyperaldosteronism%40>

>>> Subject: Re: Fatigue

>>>

>>> You need to see someone who is VERY familiar with following PA pts

>>> Where do you live?

>>> Has K ever been high

>>>

>>> Sent from my iPhone

>>>

>>> CE Grim MD

>>>

>>> On Dec 15, 2008, at 6:30 PM, megra0409

>>> <megra0409@... <mailto:megra0409%40bigpond.com>

<mailto:megra0409%40bigpond.com> > wrote:

>>>

>>>

>>>> It appears that I was only born with the one kidney and I was found

>>>> to be

>>>> this way when they did the total colectomy 10 years ago. Before

>>>> that

>>>> I had

>>>> no idea that I only had the right kidney and it is hypertrophied

>>>> due

>>>> to

>>>> being singular. I do however have two adrenal glands and

>>>> interestingly the

>>>> left adrenal gland (whilst there is no left kidney) is particularly

>>>> hypertrophied

>>>>

>>>> I have had several admissions this year to hospital with low

>>>> potassium, and

>>>> each time it comes it is at a time when I am run down with this

>>>> damn

>>>> PHA,

>>>> and that appears to knock out my already difficult gastro

>>>>

>>> function and

>>>

>>>> causes diarrhoea (which I can get easily as I do not have the large

>>>> bowel).

>>>> Naturally though the doctors do not want me to take a potassium

>>>> supplement

>>>> due to the spironolactone, however my specialist tells me to take

>>>> at

>>>> least

>>>> one Slow K tablet orally when I get diarrhoea to sustain my

>>>>

>>> potassium

>>>

>>>> levels. Other than these 4-5 episodes of low potassium this year,

>>>> my

>>>> levels

>>>> remain fairly consistent around 4.5.

>>>>

>>>> After three months of treatment on the spironolactone with dosages

>>>> starting

>>>> at 100mg per day down to 25 mg, then up to 37.5 mg and as of

>>>> yesterday up to

>>>> 50mg per day, my BP has reduced to around 137/75. I also remain on

>>>> 16mg of

>>>> Atacand daily. Do you think I should be seeing an endocrinologist

>>>>

>>> for

>>>

>>>> management of this disease or stay remaining with my renal

>>>> physician? As I

>>>> said my Creatinine levels do fluctuate but the average appears to

>>>> be

>>>> 95-100.

>>>>

>>>> Thank you for your time in responding.

>>>>

>>>> Re: Fatigue

>>>>>

>>>>> Please give us more details

>>>>>

>>>>> 36 my of Spiro is a very low dose

>>>>> Atavand will not work in PA

>>>>>

>>>>> Be certain you are DASHing to minimize néed for mess

>>>>>

>>>>> Sent from my iPhone

>>>>>

>>>>> CE Grim MD

>>>>>

>>>>> On Dec 14, 2008, at 1:11 AM, megra0409

>>>>> <megra0409@... <mailto:megra0409%40bigpond.com>

<mailto:megra0409%40bigpond.com>

>>>>>

>>> <mailto:megra0409%40bigpond.com> > wrote:

>>>

>>>>>> Hi All,

>>>>>>

>>>>>> I am so pleased to have found this group as I feel very alone in

>>>>>> battling

>>>>>> this condition. 3 months ago after adrenal vein sampling I was

>>>>>> diagnosed

>>>>>> with PHA as a result of bilateral hyperplasia of the adrenal

>>>>>>

>>>> glands.

>>>>

>>>>>> I am

>>>>>> currently on 36mg Spironolactone and 16 mg Atacand but remain

>>>>>> constantly

>>>>>> fatigued. My renal specialist who is treating me for the PHA

>>>>>>

>>> (as I

>>>

>>>>>> have a

>>>>>> unilateral right kidney) keeps telling me I will start feeling

>>>>>> better, but

>>>>>> three months after taking this medication I am feeling only

>>>>>>

>>>> slightly

>>>>

>>>>>> improved. I am beginning to understand how people get depression

>>>>>> with this

>>>>>> condition. I would love to hear other's thoughts on my

>>>>>>

>>> condition.

>>>

>>>>>> Many thanks

>>>>>>

>>>>>> Megra0409

>>>>>>

>>>>>>

[Guest guest]

Happy to interact with your local Dr, if you and they are OK with it.

I suggest I send them a copy of my CV-which is in our files I think.

CE Grim MD

On Dec 16, 2008, at 1:28 AM, Farah Rahbar wrote:

> I am closer to Stanford. I have seen the doc at UCSF, Dr. Duh prior

> to my

> AVS before going to Mayo. That was after Stanford mixed me up with

> another

> patient in the hospital and game me heart meds of another patient.

> I havent

> looked into any endos there since.

>

> Best,

> Farah

>

> On Mon, Dec 15, 2008 at 8:00 PM, Clarence Grim <lowerbp2@...>

> wrote:

>

> > I know of no one there I can recommend but there must be some.

> > Have you looked at Stanford or UCSF?

> >

> > Dave seemed to have found a good team.

> >

> > Again I stand ready to train your local Docs as I have trained many.

> >

> > CE Grim MD

> >

> > On Dec 15, 2008, at 7:59 PM, Farah Rahbar wrote:

> >

> > > Is there such a doctor anywhere?

> > > Dr. Grim, you are the only one I can trust after 5 years who knows

> > > something

> > > about PA. I am yet to meet a doctor who knows what he/she is

> > > talking about

> > > in treating PA patients. At least in North Cal such a thing does

> > > not exist.

> > >

> > > Best,

> > > Farah

> > >

> > > On Mon, Dec 15, 2008 at 5:21 PM, Lowerbp2

> <lowerbp2@...<lowerbp2%40mac.com>>

> > wrote:

> > >

> > > > You need to see someone who is VERY familiar with following

> PA pts

> > > > Where do you live?

> > > > Has K ever been high

> > > >

> > > >

> > > > Sent from my iPhone

> > > >

> > > > CE Grim MD

> > > >

> > > > On Dec 15, 2008, at 6:30 PM, megra0409

> > > <megra0409@... <megra0409%40bigpond.com><megra0409%

> 40bigpond.com

> > >>

> >

> > > > wrote:

> > > >

> > > > > It appears that I was only born with the one kidney and I was

> > > found

> > > > > to be

> > > > > this way when they did the total colectomy 10 years ago.

> Before

> > > that

> > > > > I had

> > > > > no idea that I only had the right kidney and it is

> > > hypertrophied due

> > > > > to

> > > > > being singular. I do however have two adrenal glands and

> > > > > interestingly the

> > > > > left adrenal gland (whilst there is no left kidney) is

> > > particularly

> > > > > hypertrophied

> > > > >

> > > > > I have had several admissions this year to hospital with low

> > > > > potassium, and

> > > > > each time it comes it is at a time when I am run down with

> this

> > > damn

> > > > > PHA,

> > > > > and that appears to knock out my already difficult gastro

> > > function and

> > > > > causes diarrhoea (which I can get easily as I do not have the

> > > large

> > > > > bowel).

> > > > > Naturally though the doctors do not want me to take a

> potassium

> > > > > supplement

> > > > > due to the spironolactone, however my specialist tells me to

> > > take at

> > > > > least

> > > > > one Slow K tablet orally when I get diarrhoea to sustain my

> > > potassium

> > > > > levels. Other than these 4-5 episodes of low potassium this

> > > year, my

> > > > > levels

> > > > > remain fairly consistent around 4.5.

> > > > >

> > > > > After three months of treatment on the spironolactone with

> dosages

> > > > > starting

> > > > > at 100mg per day down to 25 mg, then up to 37.5 mg and as of

> > > > > yesterday up to

> > > > > 50mg per day, my BP has reduced to around 137/75. I also

> remain on

> > > > > 16mg of

> > > > > Atacand daily. Do you think I should be seeing an

> > > endocrinologist for

> > > > > management of this disease or stay remaining with my renal

> > > > > physician? As I

> > > > > said my Creatinine levels do fluctuate but the average appears

> > > to be

> > > > > 95-100.

> > > > >

> > > > > Thank you for your time in responding.

> > > > >

> > > > > Re: Fatigue

> > > > > >

> > > > > > Please give us more details

> > > > > >

> > > > > > 36 my of Spiro is a very low dose

> > > > > > Atavand will not work in PA

> > > > > >

> > > > > > Be certain you are DASHing to minimize néed for mess

> > > > > >

> > > > > > Sent from my iPhone

> > > > > >

> > > > > > CE Grim MD

> > > > > >

> > > > > > On Dec 14, 2008, at 1:11 AM, megra0409

> > > > > > <megra0409@... <megra0409%40bigpond.com> <megra0409%

> > 40bigpond.com><mailto:

> >

> > > > megra0409%40bigpond.com <megra0409%2540bigpond.com>> > wrote:

> > > > > >

> > > > > > > Hi All,

> > > > > > >

> > > > > > > I am so pleased to have found this group as I feel very

> > > alone in

> > > > > > > battling

> > > > > > > this condition. 3 months ago after adrenal vein

> sampling I was

> > > > > > > diagnosed

> > > > > > > with PHA as a result of bilateral hyperplasia of the

> adrenal

> > > > > glands.

> > > > > > > I am

> > > > > > > currently on 36mg Spironolactone and 16 mg Atacand but

> remain

> > > > > > > constantly

> > > > > > > fatigued. My renal specialist who is treating me for the

> > > PHA (as I

> > > > > > > have a

> > > > > > > unilateral right kidney) keeps telling me I will start

> feeling

> > > > > > > better, but

> > > > > > > three months after taking this medication I am feeling

> only

> > > > > slightly

> > > > > > > improved. I am beginning to understand how people get

> > > depression

> > > > > > > with this

> > > > > > > condition. I would love to hear other's thoughts on my

> > > condition.

> > > > > > >

> > > > > > > Many thanks

> > > > > > >

> > > > > > > Megra0409

> > > > > > >

> > > > > > >

[Guest guest]

Hey Dr G,

I went to see my Renal Physician yesterday and took along your paper to show

her. She has heard of Dr Stowasser in Brisbane and agrees to me seeing an

Endo now and will put forward a referral when you or Carol referral may be

able to advise of a name of an Endo to see here in Sydney.

My BP has been sitting around 140/80 for the last week, and when I presented

to the Dr yesterday she could see I was most unwell. As my BP has responded

so well to the Spiro on my current low dose, my Dr thinks I am mainly unwell

due to the side effects of the spiro. She has agreed that our course of

action shall be for me to see an endo to see what they think needs to

happen, and consider moving off spiro altogether, and trying another adrenal

suppressant. She gave me digesics for my muscle pain, but that has given me

shocking problems with my stomach (due to the total colectomy).... so I

won’t be taking too many of those tablets let me tell you!

Anyway thanks to you and the group for your support, I truly appreciate it.

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Sent: Wednesday, 17 December 2008 7:27 AM

hyperaldosteronism

Subject: Re: Fatigue

Happy to interact with your local Dr, if you and they are OK with it.

I suggest I send them a copy of my CV-which is in our files I think.

CE Grim MD

On Dec 16, 2008, at 1:28 AM, Farah Rahbar wrote:

> I am closer to Stanford. I have seen the doc at UCSF, Dr. Duh prior

> to my

> AVS before going to Mayo. That was after Stanford mixed me up with

> another

> patient in the hospital and game me heart meds of another patient.

> I havent

> looked into any endos there since.

>

> Best,

> Farah

>

> On Mon, Dec 15, 2008 at 8:00 PM, Clarence Grim <lowerbp2@...

<mailto:lowerbp2%40mac.com> >

> wrote:

>

> > I know of no one there I can recommend but there must be some.

> > Have you looked at Stanford or UCSF?

> >

> > Dave seemed to have found a good team.

> >

> > Again I stand ready to train your local Docs as I have trained many.

> >

> > CE Grim MD

> >

> > On Dec 15, 2008, at 7:59 PM, Farah Rahbar wrote:

> >

> > > Is there such a doctor anywhere?

> > > Dr. Grim, you are the only one I can trust after 5 years who knows

> > > something

> > > about PA. I am yet to meet a doctor who knows what he/she is

> > > talking about

> > > in treating PA patients. At least in North Cal such a thing does

> > > not exist.

> > >

> > > Best,

> > > Farah

> > >

> > > On Mon, Dec 15, 2008 at 5:21 PM, Lowerbp2

> <lowerbp2@... <mailto:lowerbp2%40mac.com> <lowerbp2%40mac.com>>

> > wrote:

> > >

> > > > You need to see someone who is VERY familiar with following

> PA pts

> > > > Where do you live?

> > > > Has K ever been high

> > > >

> > > >

> > > > Sent from my iPhone

> > > >

> > > > CE Grim MD

> > > >

> > > > On Dec 15, 2008, at 6:30 PM, megra0409

> > > <megra0409@... <mailto:megra0409%40bigpond.com>

<megra0409%40bigpond.com><megra0409%

> 40bigpond.com

> > >>

> >

> > > > wrote:

> > > >

> > > > > It appears that I was only born with the one kidney and I was

> > > found

> > > > > to be

> > > > > this way when they did the total colectomy 10 years ago.

> Before

> > > that

> > > > > I had

> > > > > no idea that I only had the right kidney and it is

> > > hypertrophied due

> > > > > to

> > > > > being singular. I do however have two adrenal glands and

> > > > > interestingly the

> > > > > left adrenal gland (whilst there is no left kidney) is

> > > particularly

> > > > > hypertrophied

> > > > >

> > > > > I have had several admissions this year to hospital with low

> > > > > potassium, and

> > > > > each time it comes it is at a time when I am run down with

> this

> > > damn

> > > > > PHA,

> > > > > and that appears to knock out my already difficult gastro

> > > function and

> > > > > causes diarrhoea (which I can get easily as I do not have the

> > > large

> > > > > bowel).

> > > > > Naturally though the doctors do not want me to take a

> potassium

> > > > > supplement

> > > > > due to the spironolactone, however my specialist tells me to

> > > take at

> > > > > least

> > > > > one Slow K tablet orally when I get diarrhoea to sustain my

> > > potassium

> > > > > levels. Other than these 4-5 episodes of low potassium this

> > > year, my

> > > > > levels

> > > > > remain fairly consistent around 4.5.

> > > > >

> > > > > After three months of treatment on the spironolactone with

> dosages

> > > > > starting

> > > > > at 100mg per day down to 25 mg, then up to 37.5 mg and as of

> > > > > yesterday up to

> > > > > 50mg per day, my BP has reduced to around 137/75. I also

> remain on

> > > > > 16mg of

> > > > > Atacand daily. Do you think I should be seeing an

> > > endocrinologist for

> > > > > management of this disease or stay remaining with my renal

> > > > > physician? As I

> > > > > said my Creatinine levels do fluctuate but the average appears

> > > to be

> > > > > 95-100.

> > > > >

> > > > > Thank you for your time in responding.

> > > > >

> > > > > Re: Fatigue

> > > > > >

> > > > > > Please give us more details

> > > > > >

> > > > > > 36 my of Spiro is a very low dose

> > > > > > Atavand will not work in PA

> > > > > >

> > > > > > Be certain you are DASHing to minimize néed for mess

> > > > > >

> > > > > > Sent from my iPhone

> > > > > >

> > > > > > CE Grim MD

> > > > > >

> > > > > > On Dec 14, 2008, at 1:11 AM, megra0409

> > > > > > <megra0409@... <mailto:megra0409%40bigpond.com>

<megra0409%40bigpond.com> <megra0409%

> > 40bigpond.com><mailto:

> >

> > > > megra0409%40bigpond.com <megra0409%2540bigpond.com>> > wrote:

> > > > > >

> > > > > > > Hi All,

> > > > > > >

> > > > > > > I am so pleased to have found this group as I feel very

> > > alone in

> > > > > > > battling

> > > > > > > this condition. 3 months ago after adrenal vein

> sampling I was

> > > > > > > diagnosed

> > > > > > > with PHA as a result of bilateral hyperplasia of the

> adrenal

> > > > > glands.

> > > > > > > I am

> > > > > > > currently on 36mg Spironolactone and 16 mg Atacand but

> remain

> > > > > > > constantly

> > > > > > > fatigued. My renal specialist who is treating me for the

> > > PHA (as I

> > > > > > > have a

> > > > > > > unilateral right kidney) keeps telling me I will start

> feeling

> > > > > > > better, but

> > > > > > > three months after taking this medication I am feeling

> only

> > > > > slightly

> > > > > > > improved. I am beginning to understand how people get

> > > depression

> > > > > > > with this

> > > > > > > condition. I would love to hear other's thoughts on my

> > > condition.

> > > > > > >

> > > > > > > Many thanks

> > > > > > >

> > > > > > > Megra0409

> > > > > > >

> > > > > > >

[Guest guest]

I would be happy with 135/85 average at home. So you are close.

You want an Endo who knows PA.

Nothing from Dr. Stowasser yet.

CE Grim MD

On Dec 17, 2008, at 9:00 PM, megra0409 wrote:

> Hey Dr G,

>

> I went to see my Renal Physician yesterday and took along your

> paper to show

> her. She has heard of Dr Stowasser in Brisbane and agrees to me

> seeing an

> Endo now and will put forward a referral when you or Carol referral

> may be

> able to advise of a name of an Endo to see here in Sydney.

>

> My BP has been sitting around 140/80 for the last week, and when I

> presented

> to the Dr yesterday she could see I was most unwell. As my BP has

> responded

> so well to the Spiro on my current low dose, my Dr thinks I am

> mainly unwell

> due to the side effects of the spiro. She has agreed that our

> course of

> action shall be for me to see an endo to see what they think needs to

> happen, and consider moving off spiro altogether, and trying

> another adrenal

> suppressant. She gave me digesics for my muscle pain, but that has

> given me

> shocking problems with my stomach (due to the total colectomy)....

> so I

> won’t be taking too many of those tablets let me tell you!

>

> Anyway thanks to you and the group for your support, I truly

> appreciate it.

>

>

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

> Sent: Wednesday, 17 December 2008 7:27 AM

> hyperaldosteronism

> Subject: Re: Fatigue

>

> Happy to interact with your local Dr, if you and they are OK with it.

> I suggest I send them a copy of my CV-which is in our files I think.

>

> CE Grim MD

>

> On Dec 16, 2008, at 1:28 AM, Farah Rahbar wrote:

>

> > I am closer to Stanford. I have seen the doc at UCSF, Dr. Duh prior

> > to my

> > AVS before going to Mayo. That was after Stanford mixed me up with

> > another

> > patient in the hospital and game me heart meds of another patient.

> > I havent

> > looked into any endos there since.

> >

> > Best,

> > Farah

> >

> > On Mon, Dec 15, 2008 at 8:00 PM, Clarence Grim <lowerbp2@...

> <mailto:lowerbp2%40mac.com> >

> > wrote:

> >

> > > I know of no one there I can recommend but there must be some.

> > > Have you looked at Stanford or UCSF?

> > >

> > > Dave seemed to have found a good team.

> > >

> > > Again I stand ready to train your local Docs as I have trained

> many.

> > >

> > > CE Grim MD

> > >

> > > On Dec 15, 2008, at 7:59 PM, Farah Rahbar wrote:

> > >

> > > > Is there such a doctor anywhere?

> > > > Dr. Grim, you are the only one I can trust after 5 years who

> knows

> > > > something

> > > > about PA. I am yet to meet a doctor who knows what he/she is

> > > > talking about

> > > > in treating PA patients. At least in North Cal such a thing does

> > > > not exist.

> > > >

> > > > Best,

> > > > Farah

> > > >

> > > > On Mon, Dec 15, 2008 at 5:21 PM, Lowerbp2

> > <lowerbp2@... <mailto:lowerbp2%40mac.com> <lowerbp2%40mac.com>>

> > > wrote:

> > > >

> > > > > You need to see someone who is VERY familiar with following

> > PA pts

> > > > > Where do you live?

> > > > > Has K ever been high

> > > > >

> > > > >

> > > > > Sent from my iPhone

> > > > >

> > > > > CE Grim MD

> > > > >

> > > > > On Dec 15, 2008, at 6:30 PM, megra0409

> > > > <megra0409@... <mailto:megra0409%40bigpond.com>

> <megra0409%40bigpond.com><megra0409%

> > 40bigpond.com

> > > >>

> > >

> > > > > wrote:

> > > > >

> > > > > > It appears that I was only born with the one kidney and I

> was

> > > > found

> > > > > > to be

> > > > > > this way when they did the total colectomy 10 years ago.

> > Before

> > > > that

> > > > > > I had

> > > > > > no idea that I only had the right kidney and it is

> > > > hypertrophied due

> > > > > > to

> > > > > > being singular. I do however have two adrenal glands and

> > > > > > interestingly the

> > > > > > left adrenal gland (whilst there is no left kidney) is

> > > > particularly

> > > > > > hypertrophied

> > > > > >

> > > > > > I have had several admissions this year to hospital with low

> > > > > > potassium, and

> > > > > > each time it comes it is at a time when I am run down with

> > this

> > > > damn

> > > > > > PHA,

> > > > > > and that appears to knock out my already difficult gastro

> > > > function and

> > > > > > causes diarrhoea (which I can get easily as I do not have

> the

> > > > large

> > > > > > bowel).

> > > > > > Naturally though the doctors do not want me to take a

> > potassium

> > > > > > supplement

> > > > > > due to the spironolactone, however my specialist tells me to

> > > > take at

> > > > > > least

> > > > > > one Slow K tablet orally when I get diarrhoea to sustain my

> > > > potassium

> > > > > > levels. Other than these 4-5 episodes of low potassium this

> > > > year, my

> > > > > > levels

> > > > > > remain fairly consistent around 4.5.

> > > > > >

> > > > > > After three months of treatment on the spironolactone with

> > dosages

> > > > > > starting

> > > > > > at 100mg per day down to 25 mg, then up to 37.5 mg and as of

> > > > > > yesterday up to

> > > > > > 50mg per day, my BP has reduced to around 137/75. I also

> > remain on

> > > > > > 16mg of

> > > > > > Atacand daily. Do you think I should be seeing an

> > > > endocrinologist for

> > > > > > management of this disease or stay remaining with my renal

> > > > > > physician? As I

> > > > > > said my Creatinine levels do fluctuate but the average

> appears

> > > > to be

> > > > > > 95-100.

> > > > > >

> > > > > > Thank you for your time in responding.

> > > > > >

> > > > > > Re: Fatigue

> > > > > > >

> > > > > > > Please give us more details

> > > > > > >

> > > > > > > 36 my of Spiro is a very low dose

> > > > > > > Atavand will not work in PA

> > > > > > >

> > > > > > > Be certain you are DASHing to minimize néed for mess

> > > > > > >

> > > > > > > Sent from my iPhone

> > > > > > >

> > > > > > > CE Grim MD

> > > > > > >

> > > > > > > On Dec 14, 2008, at 1:11 AM, megra0409

> > > > > > > <megra0409@... <mailto:megra0409%40bigpond.com>

> <megra0409%40bigpond.com> <megra0409%

> > > 40bigpond.com><mailto:

> > >

> > > > > megra0409%40bigpond.com <megra0409%2540bigpond.com>> > wrote:

> > > > > > >

> > > > > > > > Hi All,

> > > > > > > >

> > > > > > > > I am so pleased to have found this group as I feel very

> > > > alone in

> > > > > > > > battling

> > > > > > > > this condition. 3 months ago after adrenal vein

> > sampling I was

> > > > > > > > diagnosed

> > > > > > > > with PHA as a result of bilateral hyperplasia of the

> > adrenal

> > > > > > glands.

> > > > > > > > I am

> > > > > > > > currently on 36mg Spironolactone and 16 mg Atacand but

> > remain

> > > > > > > > constantly

> > > > > > > > fatigued. My renal specialist who is treating me for the

> > > > PHA (as I

> > > > > > > > have a

> > > > > > > > unilateral right kidney) keeps telling me I will start

> > feeling

> > > > > > > > better, but

> > > > > > > > three months after taking this medication I am feeling

> > only

> > > > > > slightly

> > > > > > > > improved. I am beginning to understand how people get

> > > > depression

> > > > > > > > with this

> > > > > > > > condition. I would love to hear other's thoughts on my

> > > > condition.

> > > > > > > >

> > > > > > > > Many thanks

> > > > > > > >

> > > > > > > > Megra0409

> > > > > > > >

> > > > > > > >

[Guest guest]

Megra0409

Hi, I have P.A. and I started a blog one nite out of sheer desperation

to connect to others who are suffering with the same symptoms. I've

included a posting below that deals with empowering yourself through

becoming your own patient advocate. I thought maybe it could help you.

Take Care, F.S.1

http://hyperaldosteronism.blogspot.com/2009/01/becoming-your-own-patient-advocat\

e.html

>

> Hi All,

>

>

>

> I am so pleased to have found this group as I feel very alone in

battling

> this condition. 3 months ago after adrenal vein sampling I was

diagnosed

> with PHA as a result of bilateral hyperplasia of the adrenal glands.

I am

> currently on 36mg Spironolactone and 16 mg Atacand but remain constantly

> fatigued. My renal specialist who is treating me for the PHA (as I

have a

> unilateral right kidney) keeps telling me I will start feeling

better, but

> three months after taking this medication I am feeling only slightly

> improved. I am beginning to understand how people get depression

with this

> condition. I would love to hear other's thoughts on my condition.

>

>

>

> Many thanks

>

> Megra0409

>

>

>

>

[Guest guest]

Looks good. Another reason to tell family is that rarely PA runs in

families. Good to have a link to us.

Keep us posted.

May your pressure be low!



CE Grim BS, MS, MD

High Blood Pressure Consulting

Senior Consultant to Shared Care Research and Education Consulting

Inc.(sharedcareinc.com)

Clinical Professor of Internal Medicine Medical and Cardiology

Medical College of Wisconsin

Board certified in Internal Med, Geriatrics and Hypertension.

Interests:

1. Difficult to control high blood pressure.

2. The effect of recent evolutionary forces on high blood pressure

in human populations.

3. Improving blood pressure measurement in the office and out.

On Jan 15, 2009, at 11:49 PM, flowerspy1 wrote:

> Megra0409

>

> Hi, I have P.A. and I started a blog one nite out of sheer desperation

> to connect to others who are suffering with the same symptoms. I've

> included a posting below that deals with empowering yourself through

> becoming your own patient advocate. I thought maybe it could help you.

>

> Take Care, F.S.1

>

> http://hyperaldosteronism.blogspot.com/2009/01/becoming-your-own-

> patient-advocate.html

>

>

> >

> > Hi All,

> >

> >

> >

> > I am so pleased to have found this group as I feel very alone in

> battling

> > this condition. 3 months ago after adrenal vein sampling I was

> diagnosed

> > with PHA as a result of bilateral hyperplasia of the adrenal glands.

> I am

> > currently on 36mg Spironolactone and 16 mg Atacand but remain

> constantly

> > fatigued. My renal specialist who is treating me for the PHA (as I

> have a

> > unilateral right kidney) keeps telling me I will start feeling

> better, but

> > three months after taking this medication I am feeling only slightly

> > improved. I am beginning to understand how people get depression

> with this

> > condition. I would love to hear other's thoughts on my condition.

> >

> >

> >

> > Many thanks

> >

> > Megra0409

> >

> >

> >

> >

[Guest guest]

great blog. Whats missing is explaining the importance of the DASH(Dietary

Approaches to Stop Hypertension) diet. Also, the medication for this

condition, Aldactone, or Inspra are the only two medications that will work

along with DASHING .

On Thu, Jan 15, 2009 at 11:49 PM, flowerspy1 <flowerspy1@...> wrote:

> Megra0409

>

> Hi, I have P.A. and I started a blog one nite out of sheer desperation

> to connect to others who are suffering with the same symptoms. I've

> included a posting below that deals with empowering yourself through

> becoming your own patient advocate. I thought maybe it could help you.

>

> Take Care, F.S.1

>

>

>

http://hyperaldosteronism.blogspot.com/2009/01/becoming-your-own-patient-advocat\

e.html

>

>

> >

> > Hi All,

> >

> >

> >

> > I am so pleased to have found this group as I feel very alone in

> battling

> > this condition. 3 months ago after adrenal vein sampling I was

> diagnosed

> > with PHA as a result of bilateral hyperplasia of the adrenal glands.

> I am

> > currently on 36mg Spironolactone and 16 mg Atacand but remain constantly

> > fatigued. My renal specialist who is treating me for the PHA (as I

> have a

> > unilateral right kidney) keeps telling me I will start feeling

> better, but

> > three months after taking this medication I am feeling only slightly

> > improved. I am beginning to understand how people get depression

> with this

> > condition. I would love to hear other's thoughts on my condition.

> >

> >

> >

> > Many thanks

> >

> > Megra0409

> >

> >

> >

> >

[Guest guest]

thanks! as for the dash diet, I can't comment on it because I haven't

done it. It sounds like most of this groups members have. I am new to

the group, and just heard about it. my doctor and i have already

gone over lower sodium options, including more veggies/fruits which

sounds a lot like dash. Will check it out when I can. again the meds

which you mention I have not taken either. I am basing my blog on my

personal experiences- but am glad to meet new friends who have other

experiences to share.

f.s.

> > >

> > > Hi All,

> > >

> > >

> > >

> > > I am so pleased to have found this group as I feel very alone in

> > battling

> > > this condition. 3 months ago after adrenal vein sampling I was

> > diagnosed

> > > with PHA as a result of bilateral hyperplasia of the adrenal glands.

> > I am

> > > currently on 36mg Spironolactone and 16 mg Atacand but remain

constantly

> > > fatigued. My renal specialist who is treating me for the PHA (as I

> > have a

> > > unilateral right kidney) keeps telling me I will start feeling

> > better, but

> > > three months after taking this medication I am feeling only slightly

> > > improved. I am beginning to understand how people get depression

> > with this

> > > condition. I would love to hear other's thoughts on my condition.

> > >

> > >

> > >

> > > Many thanks

> > >

> > > Megra0409

> > >

> > >

> > >

> > >

[Guest guest]

Get the book as soon as you can and do the

Tiped pn and Sent from my iPhone ;-)

CE Grim MD

Specializing in Difficult

Hypertension

On Jan 16, 2009, at 2:31 PM, flowerspy1 <flowerspy1@...> wrote:

> thanks! as for the dash diet, I can't comment on it because I haven't

> done it. It sounds like most of this groups members have. I am new to

> the group, and just heard about it. my doctor and i have already

> gone over lower sodium options, including more veggies/fruits which

> sounds a lot like dash. Will check it out when I can. again the meds

> which you mention I have not taken either. I am basing my blog on my

> personal experiences- but am glad to meet new friends who have other

> experiences to share.

>

> f.s.

>

> > > >

> > > > Hi All,

> > > >

> > > >

> > > >

> > > > I am so pleased to have found this group as I feel very alone in

> > > battling

> > > > this condition. 3 months ago after adrenal vein sampling I was

> > > diagnosed

> > > > with PHA as a result of bilateral hyperplasia of the adrenal

> glands.

> > > I am

> > > > currently on 36mg Spironolactone and 16 mg Atacand but remain

> constantly

> > > > fatigued. My renal specialist who is treating me for the PHA

> (as I

> > > have a

> > > > unilateral right kidney) keeps telling me I will start feeling

> > > better, but

> > > > three months after taking this medication I am feeling only

> slightly

> > > > improved. I am beginning to understand how people get depression

> > > with this

> > > > condition. I would love to hear other's thoughts on my

> condition.

> > > >

> > > >

> > > >

> > > > Many thanks

> > > >

> > > > Megra0409

> > > >

> > > >

> > > >

> > > >

[Guest guest]

have you looked into Candida? It all seems to go together...candida overgrowth attracts the damn bugs(mites,fungus gnats,etc) to you. I found that a Candida cleanse and no sugar diet helps SO MUCH. Go check it out and see if any of it sounds familiar. www.naturallythriving.com has some good info...look at the box on the left for the CANDIDA 1,2, & 3 just switching from sugar to stevia did me alot of good! I was wondering if it had an affect because I was back to normal...FELT GREAT, even survived the flu(4 kids) so a few days ago i had a couple of beers , some junk food, cake and yesterday I had a mocha java chiller from Sonic. I woke up, if you wanna call that sleep, this morning feeling terrible. My face is all broke out! Worse than ever. My throat is itching. My ears are killing me. My shoulders hurt. My skin is crawling. So, I now know FOR SURE I cannot have those things. The Candida is obviously what drew these damn bugs to me. I am sensitive to mold anywhere i go. Sorry this is so long, just wanted to share. take care, chasity >> I also notice I'm tired a lot of the time lately, some days I sleep around the clock. My sleep cycle is all messed up. I've also dropped about 50 lbs. since this whole thing started. I needed to lose weight, but this is such a scary way to do it. There was a couple weeks where I seemed to have no appetite and diarhea. That was when I lost most of the weight. Then it seemed to stabilize and I got most of my appetite back. Anyone else have an experience like this?>

[Guest guest]

Are you the One that had a fever? If so what is your temp now? Mine is always so low 95.5 or around there. I just read a great articsl last night on a way to raise your temp by taking baths. I will post it later when I get home from work. Does any one else have a low temp since this started?                                              TommySent from my iPhoneOn Mar 5, 2009, at 4:24 PM, "dammitgrl2001" <dammitgrl2001@...> wrote:

have you looked into Candida?  It all seems to go together...candida overgrowth attracts the damn bugs(mites,fungus gnats,etc) to you.  I found that a Candida cleanse and no sugar diet helps SO MUCH.  Go check it out and see if any of it sounds familiar.  www.naturallythriving.com   has some good info...look at the box on the left for the CANDIDA 1,2, & 3   just switching from sugar to stevia did me alot of good!   I was wondering if it had an affect because I was back to normal...FELT GREAT, even survived the flu(4 kids)  so a few days ago i had a couple of beers , some junk food, cake and yesterday I had a mocha java chiller from Sonic.  I woke up, if you wanna call that sleep, this morning feeling terrible.  My face is all broke out!  Worse than ever.  My throat is

itching. My ears are killing me.   My shoulders hurt. My skin is crawling.  So, I now know FOR SURE I cannot have those things.  The Candida is obviously what drew these damn bugs to me. I am sensitive to mold anywhere i go.   Sorry this is so long, just wanted to share.  take care, chasity >> I also notice I'm tired a lot of the time lately, some days I sleep around the clock. My sleep cycle is all messed up. I've also dropped about 50 lbs. since this whole thing started. I needed to lose weight, but this is such a scary way to do it. There was a couple weeks where I seemed to have no appetite and diarhea. That was when I lost most of the weight. Then it seemed to stabilize and I got most of my appetite back. Anyone else have an experience like this?>