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Re: What's been up these months

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Work with the DASH diet as it will help BP as well. Why is surgery planned?

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/2/03 3:24:49 AM, Helen@... writes:

Hi Okemah,

At least you are doing something constructive and losing the weight. Once

you have a date set for surgery things will start to look up and after the

surgery you will soon be ready to go get 'em again!

How do you manage to study with PA? I found I was just so exhausted and my

memory in ribbons that I had to give up my job...... that was before I had

a diagnosis so I also didn't get any of the help I would have had if I'd

had a diagnosis at that time (thanks to my previous Dr) and as a result I

have ended up in a bit of financial difficulty - however now I am back at

work I am climbing out of that hole much faster than I expected and should

be debt free in three or four months.

If I'd been sent to the hospital 6 months earlier I would have had a year's

pay and a sick grant from my employer. As it was I had to leave because I

couldn't cope (that isn't covered by any insurance scheme!)and by the time

I did have a diagnosis I couldn't claim as I was out of time .... still

that is water under the bridge and there is no point in looking back in

anger as nothing I can do about it now. 

I also found my local hospital both where I used to live in England and the

local hospital here refuse to do any of the standard follow up testing

(U & Es and BP) so I have to make a full day's journey to Edinburgh to have

simple tests done. I did ask at the local hospital if they did U & E and BP

for other conditions and they do, it's just they don't have any experience

of PA so won't even do the routine check-ups that my endocrinologist wants

me to have every six months. They say it is because if the tests came back

abnormal I would have to go to Edinburgh anyway! I should have had the

first 6 monthly in March but am still waiting for the appointment in

Edinburgh..... I'm told there is a 4 month waiting list so maybe I'll get

seen this summer.

Apart from that nothing new to report except I STILL have the acid-reflux

that started when I was taking spiro, it's never really died down even

after I finished with the spiro. Eating something helps a bit and I know I

should go and see my Doc about it!

It sounds to me that you need to see a lawyer who speicalizes in medical cases. All doctors should be able to diagnose PA when it has been as bad as yours. One who cannot should be doing something else.

I trust you take your own BP?

Can you mail the urines to Edin?

Who is your expert there?

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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Hi Okemah,

At least you are doing something constructive and losing the weight. Once

you have a date set for surgery things will start to look up and after the

surgery you will soon be ready to go get 'em again!

How do you manage to study with PA? I found I was just so exhausted and my

memory in ribbons that I had to give up my job...... that was before I had

a diagnosis so I also didn't get any of the help I would have had if I'd

had a diagnosis at that time (thanks to my previous Dr) and as a result I

have ended up in a bit of financial difficulty - however now I am back at

work I am climbing out of that hole much faster than I expected and should

be debt free in three or four months.

If I'd been sent to the hospital 6 months earlier I would have had a year's

pay and a sick grant from my employer. As it was I had to leave because I

couldn't cope (that isn't covered by any insurance scheme!)and by the time

I did have a diagnosis I couldn't claim as I was out of time .... still

that is water under the bridge and there is no point in looking back in

anger as nothing I can do about it now.

I also found my local hospital both where I used to live in England and the

local hospital here refuse to do any of the standard follow up testing

(U & Es and BP) so I have to make a full day's journey to Edinburgh to have

simple tests done. I did ask at the local hospital if they did U & E and BP

for other conditions and they do, it's just they don't have any experience

of PA so won't even do the routine check-ups that my endocrinologist wants

me to have every six months. They say it is because if the tests came back

abnormal I would have to go to Edinburgh anyway! I should have had the

first 6 monthly in March but am still waiting for the appointment in

Edinburgh..... I'm told there is a 4 month waiting list so maybe I'll get

seen this summer.

Apart from that nothing new to report except I STILL have the acid-reflux

that started when I was taking spiro, it's never really died down even

after I finished with the spiro. Eating something helps a bit and I know I

should go and see my Doc about it!

Helen

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>>>>>>>>>It sounds to me that you need to see a lawyer who speicalizes in

medical

cases. All doctors should be able to diagnose PA when it has been as bad

as

yours. One who cannot should be doing something else.

I've been told I have to pay a large sum up front as it wouldn't be a case

they expect to win being my word against the Doc. I have a copy of my notes

and there is very little in there with some test results missing or lost,

so I would have to rely on my non-existant memory for dates and

conversations. Anyway I don't have the money to hire a barrister at £1,000

a day! I have made an official complaint to the BMA but don't hold up much

hope there. Our legal system is quite different to yours and normal people

can't afford to go to law as a rule, it is very much a last resort. When

there is a successful case it is big national news and I couldn't cope with

that either.

>>>>>>>>>>>>>I trust you take your own BP?

Yes but that isn't accepted by the NHS who need to do their own readings,

usually a 24 hour check.

>>>>>>>>>>>>>Can you mail the urines to Edin?

It is blood tests that need to be done. It would take 3 days to get there

via courier as the Post Office won't handle medical samples.

>>>>>>>>>Who is your expert there?

Dr Pearce was the endo in Newcastle but I don't know who I'll see in

Edinburgh. I'd much rather just go back to Newcastle but that is in a

different country so it makes things difficult.

>>>>>>>>May your pressure be low!

Amen!

H

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The Drs office records should document the BPs,K you complaints etc.

Have you complained to the British Hypertension Society?

Who is your MD now?

>It sounds to me that you need to see a lawyer who speicalizes in

medical

cases.   All doctors should be able to diagnose PA when it has been as bad

as

yours.   One who cannot should be doing something else.

I've been told I have to pay a large sum up front as it wouldn't be a case

they expect to win being my word against the Doc. I have a copy of my notes

and there is very little in there with some test results missing or lost,

so I would have to rely on my non-existant memory for dates and

conversations. Anyway I don't have the money to hire a barrister at £1,000

a day! I have made an official complaint to the BMA but don't hold up much

hope there. Our legal system is quite different to yours and normal people

can't afford to go to law as a rule, it is very much a last resort. When

there is a successful case it is big national news and I couldn't cope with

that either.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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No, I complained to the British Medical Association who hold the hearings

and complaints about doctors. I just heard this morning the case has been

opened and will be fully investigated. I am well aware the notes should be

full and complete but they just aren't! The omissions are obvious in two

instances repeat drugs (seperate prescriptions at different times, years

apart) have been issued with no record of the original prescription or

consultation, and another instance is where a follow up test is recorded

and refers to the results being " significantly higher than the previous

readings " but the original readings aren't there! Sloppy at best (wearing

my auditors hat) - had financial and accounting records kept like that the

person would be struck off the professional register.....

I wasn't aware there was a hypertensive society in Britain - I've never

been told about it and it isn't metioned in the BHF literature or any other

literature I've seen and read over the years.

My new MD is semi-retired and only works a couple of days a week. He is

lovely and has so few patients now he has time to listen to them. I was

surprised when he agreed to take me onto his list but he says I am such a

challenge it will keep him busy during his retirement years and he is never

too old to learn! He isn't afraid to say he doesn't know something and very

open-minded about finding out and discussing alternatives. He is also a

kayak nut and has promised to come out with me one weekend if I promise not

to do any waterfalls or weirs (fat chance of that as I like flat water!)

I looked up the DASH diet and it is pretty much the diet I have been

following all my life. Low/No sodium and little saturated fat, lots of

fruit and veg. Obviously being coeliac I have to avoid the gluten grains.

After my op I did find my serum K levels shot up to 6.5. I don't know what

they are now as I haven't had the follow up appointment which was due last

March. I was told to increase my sodium level to balance the high K but we

don't know yet if things have really balanced out. I feel great though so

don't think there can be very much wrong now!

Helen

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In a message dated 7/3/03 3:09:14 AM, Helen@... writes:

I looked up the DASH diet and it is pretty much the diet I have been

following all my life. Low/No sodium and little saturated fat, lots of

fruit and veg. Obviously being coeliac I have to avoid the gluten grains.

After my op I did find my serum K levels shot up to 6.5. I don't know what

they are now as I haven't had the follow up appointment which was due last

March. I was told to increase my sodium level to balance the high K but we

don't know yet if things have really balanced out. I feel great though so

don't think there can be very much wrong now!

This is one of the good signs we look for after surgery for PA..

1. The K may increase above normal as the other adrenal gland has been asleep as long as you have had HTN (due to the marked suppression of renin). It may take several weeks to get back up full stream so K is nomral.

2. A drop in serum sodium-again a sign of hypoaldosteronism due to the low renin and suppressed remaining adrenal.

3. A very low blood aldosterone-till the other adrenal kicks in.

4. Some will pee like crazy for a few days and lose several lbs. as they dump all of the the retained salt.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/3/03 3:09:14 AM, Helen@... writes:

I looked up the DASH diet and it is pretty much the diet I have been

following all my life. Low/No sodium and little saturated fat, lots of

fruit and veg. Obviously being coeliac I have to avoid the gluten grains.

After my op I did find my serum K levels shot up to 6.5. I don't know what

they are now as I haven't had the follow up appointment which was due last

March. I was told to increase my sodium level to balance the high K but we

don't know yet if things have really balanced out. I feel great though so

don't think there can be very much wrong now!

PS you might want to add my comments to your description of what may happen after surgery. Many MDs don't know this.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/2/03 10:33:42 PM, oarochette@... writes:

Howdy -

 

Surgery is planned due to hyperplasia of the left adrenal gland.  (No tumors were found in the testing performed.)  My symptoms are all controlled for the mean time, so the doctors are willing to wait until my weight drops to around 275 or so.  Right now I'm down to 318 from 360.  It's been a long trip.

 

Okemah Ann

How do they know the problem is only on one side? Very unusual with hyperplasia to be on only one side.

With that weight I would not think about surgery until you are say 225 unless you are 8 feet tall. The weight loss will help the BP.

Are you sure they and you use a large cuff to take the pressure?

I have had pts lose 70lbs on the DASH diet. Strongly recommend it as it may also control you BP enough to not need surgery or at least markedly reduce the need for meds. Work with it with your health care team.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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dr grim is it true that pee thing happen with the aldacton also?

-----Original Message-----From: lowerbp2@... [mailto:lowerbp2@...] Sent: Friday, July 04, 2003 6:41 PMhyperaldosteronism ; bloodpressureline Subject: Re: What's been up these monthsIn a message dated 7/3/03 3:09:14 AM, Helen@... writes:

I looked up the DASH diet and it is pretty much the diet I have beenfollowing all my life. Low/No sodium and little saturated fat, lots offruit and veg. Obviously being coeliac I have to avoid the gluten grains.After my op I did find my serum K levels shot up to 6.5. I don't know whatthey are now as I haven't had the follow up appointment which was due lastMarch. I was told to increase my sodium level to balance the high K but wedon't know yet if things have really balanced out. I feel great though sodon't think there can be very much wrong now!This is one of the good signs we look for after surgery for PA..1. The K may increase above normal as the other adrenal gland has been asleep as long as you have had HTN (due to the marked suppression of renin). It may take several weeks to get back up full stream so K is nomral.2. A drop in serum sodium-again a sign of hypoaldosteronism due to the low renin and suppressed remaining adrenal.3. A very low blood aldosterone-till the other adrenal kicks in. 4. Some will pee like crazy for a few days and lose several lbs. as they dump all of the the retained salt. May your pressure be low!CE Grim, BS (Chem/Math), MS (Biochem), MD.Professor of Medicine and EpidemiologyBoard Certified in Internal Medicine, Geriatrics and HypertensionPublished over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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Yes, Aldactone can completely correct the need to get up at night-but it may take a lot. DASHing will help as well.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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If BP cannot be controlled or have side effects then taking the high side out would be worth the gamble.

Review for us what kind of BP meds you are using and what kind of side effects.

I would delay till ISPAR COMES OUT SO YOU CAN TRY THAT>

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/10/03 1:07:22 PM, oarochette@... writes:

My blood pressure is contolled, anc has been for the past seven years or so.  It runs around 112/70 or so.  I am on Spiro, Maxide, and Calan to help control it.  I am on a diet high in fiber, lower in meat with little salt (virtually none added).  I've done fairly well in losing weight.  I'm 5'10".   The doctors aren't wanting me in perfect weight control, just better control, and thin enough that they aren't worried so much about my throwing a blood clot and stroking out on the table.

 

Okemah Ann

The DASH diet may control you without meds. Work with your team to see about slowly lowering Rx.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/10/03 1:07:22 PM, oarochette@... writes:

My blood pressure is contolled, anc has been for the past seven years or so.  It runs around 112/70 or so.  I am on Spiro, Maxide, and Calan to help control it.  I am on a diet high in fiber, lower in meat with little salt (virtually none added).  I've done fairly well in losing weight.  I'm 5'10".   The doctors aren't wanting me in perfect weight control, just better control, and thin enough that they aren't worried so much about my throwing a blood clot and stroking out on the table.

 

Okemah Ann

The DASH diet may control you without meds. Work with your team to see about slowly lowering Rx.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/12/03 12:02:46 PM, oarochette@... writes:

<< For BP meds I take Maxide 25 mg, Calan ER 240mg and Spironolactone 50mg

daily, and I think Lisinopril 10 mg. (I know there is another one, but the med

package doesn't say what they are for anymore. Bubble-packaging doesn't leave

a lot of room for that sort of thing.) I also take 24 units of KlorCon a day

for K regulation. This keeps me out of the hospital. >>

The DASH diet will give you about 4 x more K than the KClor and tastes

better. Besides the DASH low sodium may help you reduce weight and some of the

meds. Get the book.

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In a message dated 7/12/03 12:02:46 PM, oarochette@... writes:

<< For BP meds I take Maxide 25 mg, Calan ER 240mg and Spironolactone 50mg

daily, and I think Lisinopril 10 mg. (I know there is another one, but the med

package doesn't say what they are for anymore. Bubble-packaging doesn't leave

a lot of room for that sort of thing.) I also take 24 units of KlorCon a day

for K regulation. This keeps me out of the hospital. >>

The DASH diet will give you about 4 x more K than the KClor and tastes

better. Besides the DASH low sodium may help you reduce weight and some of the

meds. Get the book.

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In a message dated 7/12/03 11:45:42 PM, anxioushouse@... writes:

<< okemah u still take alot of meds for your bp and was thinking would an

increase of spero get it down better than all that i have the same thing

but on both as u an am now takin 100 mgs of spero and 50 mgs of toperal

and 80 mgs of diovan a day thats alot for me but im setting on b\p of

115\70 most the time we are all dif but it seem that the spero works

very good i do have some sides but from where? lol with all this

stuff who knows >>

Trust you are also working on the DASH diet!

CE Grim MD

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In a message dated 7/12/03 11:45:42 PM, anxioushouse@... writes:

<< okemah u still take alot of meds for your bp and was thinking would an

increase of spero get it down better than all that i have the same thing

but on both as u an am now takin 100 mgs of spero and 50 mgs of toperal

and 80 mgs of diovan a day thats alot for me but im setting on b\p of

115\70 most the time we are all dif but it seem that the spero works

very good i do have some sides but from where? lol with all this

stuff who knows >>

Trust you are also working on the DASH diet!

CE Grim MD

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you know i am

-----Original Message-----From: lowerbp2@... [mailto:lowerbp2@...] Sent: Monday, July 14, 2003 12:08 AMhyperaldosteronism Subject: Re: What's been up these monthsIn a message dated 7/12/03 11:45:42 PM, anxioushouse@... writes:<< okemah u still take alot of meds for your bp and was thinking would anincrease of spero get it down better than all that i have the same thingbut on both as u an am now takin 100 mgs of spero and 50 mgs of toperaland 80 mgs of diovan a day thats alot for me but im setting on b\p of115\70 most the time we are all dif but it seem that the spero worksvery good i do have some sides but from where? lol with all thisstuff who knows >>Trust you are also working on the DASH diet!CE Grim MD

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you know i am

-----Original Message-----From: lowerbp2@... [mailto:lowerbp2@...] Sent: Monday, July 14, 2003 12:08 AMhyperaldosteronism Subject: Re: What's been up these monthsIn a message dated 7/12/03 11:45:42 PM, anxioushouse@... writes:<< okemah u still take alot of meds for your bp and was thinking would anincrease of spero get it down better than all that i have the same thingbut on both as u an am now takin 100 mgs of spero and 50 mgs of toperaland 80 mgs of diovan a day thats alot for me but im setting on b\p of115\70 most the time we are all dif but it seem that the spero worksvery good i do have some sides but from where? lol with all thisstuff who knows >>Trust you are also working on the DASH diet!CE Grim MD

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In a message dated 7/14/03 12:11:51 AM, anxioushouse@... writes:

you know i am

Re: What's been up these months

In a message dated 7/12/03 11:45:42 PM, anxioushouse@... writes:

<< okemah u still take alot of meds for your bp and was thinking would an

increase of spero get it down better than all that i have the same thing

but on both as u an am now takin 100 mgs of spero and 50 mgs of toperal

and 80 mgs of diovan a day thats alot for me but im setting on b\p of

115\70 most the time we are all dif but it seem that the spero works

very good i do have some sides but    from where?   lol with all this

stuff who knows >>

Trust you are also working on the DASH diet!

CE Grim MD

Keep up the good work!

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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In a message dated 7/14/03 12:11:51 AM, anxioushouse@... writes:

you know i am

Re: What's been up these months

In a message dated 7/12/03 11:45:42 PM, anxioushouse@... writes:

<< okemah u still take alot of meds for your bp and was thinking would an

increase of spero get it down better than all that i have the same thing

but on both as u an am now takin 100 mgs of spero and 50 mgs of toperal

and 80 mgs of diovan a day thats alot for me but im setting on b\p of

115\70 most the time we are all dif but it seem that the spero works

very good i do have some sides but    from where?   lol with all this

stuff who knows >>

Trust you are also working on the DASH diet!

CE Grim MD

Keep up the good work!

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

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