Re: Sardines on toast (WAS: Sulfonylurea Warnings)

[Guest guest]

Susie

You wrote:

> ... I want to emphasize that there is no fixed dose of

> Amaryl. It is to be adjusted in response to changes in

> glucose readings or HbA1c's, and taken with breakfast

> or the first main meal of the day.

You might be surprised to hear this but when I asked the bunch of MDs that

come around the hospital shaking hands every day, what her HbA1c was, they

said that it hadn't been measured. They also saw no point in measuring it as

it was bound to be very high. I had to really get on their nerves to have it

measured just so that we have a reference point for the next time it is

measured! They reluctantly agreed to take some more blood. I am beginning to

understand what you have against the 'white-coats'.

They are still experimenting to get the right dose of Amaryl but my wife is

making it hard for them by not eating the hospital food. She wanted fish for

Ash Wednesday but the only answer we got was that it was a protestant

hospital, if she wanted fish for Ash Wednesday she should have gone to a

catholic hospital! I am beginning to suspect that she must have diabetes

type 2c (type 2 catholic).

When we asked if they had a nutritionist who could come around and talk

about her food, we were told that the resident nutritionist was concerned

only with advising the hospital about the meals served there. The medical

staff (the 'white-coats')were the ones who decided on the diet to be

followed by individual patients. They are the ones who said that there are

no dietary restrictions for diabetics - eat anything you like!

I am beginning to get the feeling I should go and ask the chaplains (they

have a protestant chaplain in a big office and a catholic chaplain in a very

small corner office) and see if they give diet advice. It is no use asking

the nurses - one of those told us yesterday that fish is not served to

diabetics because it is too rich in carbohydrates. Wow! So the doctors don't

talk to the nurses! She must be thinking about sardines on toast.

Still waiting for Dr. Bernstein to show up.

-----Ursprüngliche Nachricht-----

Von: Susie

An: <diabetes_intonelist>

Gesendet: Dienstag, 7. März 2000 15:22

Betreff: Re: Sulfonylurea Warnings (was Dr. Mirkin)

>

>

> Thornton wrote:

>

> << ... she has been in and out of hospitals in

> different countries for various things that have required comprehensive

> blood checks without diabetes ever being mentioned. As I explained, she

> regulated her blood sugar with urine test strips and diet adjustments,

which

> is all that was available for home use back where she comes from. The

> hospitals were told this. None of them ever made a formal diagnosis of

> diabetes. Pancreas insufficiency was the nearest they came to it.

>

> She was in hospital in Germany in 1996/7 for a very difficult kidney stone

> operation (she has a horseshoe kidney). We specifically asked about

diabetes

> then and were told that it was not present, blood-wise. Traces of glucose

> appeared in her urine at home but not in the hospital. Her diabetes was

> first diagnosed last November after a cataract operation because serious

> retinopathy was already evident. The opthalmologist says she must have had

> low-level diabetes for at least 10 years. Since then we have been fed

> half-truths until it came to the crisis.

>

> So 'Unchecked' is not the correct expression, 'undiagnosed in spite of

> trying' might be better. This is partly what led to her disinclination to

> hear the word 'diabetes' again. But the crisis came at a time when she was

> already being medicated for diabetes type 2. >>

>

> You are right, ... I had focused so much on your heartfelt

description

> of your wife's recent problems that I did not comprehend that it was

> actually the medical establishment that let you and her down for years.

>

> << What went wrong was that she had adjusted to NovoNorm (one tablet after

a

> main meal; no main meal, no tablet). Then she was changed to Amaryl

without

> being told that this tablet was to be taken every day, even if NOTHING is

> eaten. She then had a serious urinary tract infection and lost her

appetite.

> No main meal, no tablet, so she stopped taking them. Eventually she went

> into a series of pre-comas and comas, culminating in intensive care. I

tried

> hard to get her to take the tablets but she refused. >>

>

> I'm guessing NovoNorm is a sulfonylurea, which many of us believe hastens

> the demise of a type 2's pancreas and can cause serious hypos. It's not

> listed at RxList.com - but Amaryl is. And Amaryl is also a sulfonylurea.

> Your wife's pancreas needs a rest. This class of drugs beats it up.

>

> , what are the doctors suggesting to prevent future hyperglycemia and

> possible comas? I can sympathize with her needle phobia, but injected

> insulin might be what she needs - at least for now.

>

> Having announced that I'm strongly opposed to type 2's using any form of

> sulfonylurea, I want to emphasize that there is no fixed dose of Amaryl.

It

> is to be adjusted in response to changes in glucose readings or HbA1c's,

and

> taken with breakfast or the first main meal of the day. Here, from

> RxList.com ...

>

> ******************

>

> The usual starting dose of glimepiride as initial therapy is 1-2 mg once

> daily, administered with breakfast or the first main meal. Those patients

> who may be more sensitive to hypoglycemic drugs should be started at 1mg

> once daily, and should be titrated carefully.

>

> <snipped>

>

> Usual Maintenance Dose

> The usual maintenance dose is 1 to 4 mg once daily. The maximum

recommended

> dose is 8 mg once daily. After reaching a dose of 2 mg, dosage increases

> should be made in increments of no more than 2 mg at 1-2 week intervals

> based upon the patient's blood glucose response. Long-term efficacy should

> be monitored by measurement of HbA1c levels, for example, every 3 to 6

> months.

>

> <snipped>

>

> Special Warning On Increased Risk Of Cardiovascular Mortality -- UGDP

> reported that patients treated for 5 to 8 years with diet plus a fixed

dose

> of [another sulfonylureas] tolbutamide (1.5 grams per day) had a rate of

> cardiovascular mortality approximately 2-1/2 times that of patients

treated

> with diet alone.

>

> CONTRAINDICATIONS

>

> Glimepiride [Amaryl] is contraindicated in patients with diabetic

> ketoacidosis, with or without coma. This condition should be treated with

> insulin.

>

> PRECAUTIONS -- Hypoglycemia: All sulfonylurea drugs are capable of

> producing severe hypoglycemia. <snipped> Patients with impaired renal

> function may be more sensitive to the glucose-lowering effect of

> glimepiride. A starting dose of 1 mg once daily followed by appropriate

dose

> titriation is recommended in those patients. Debilitated or malnourished

> patients, and those with adrenal, pituitary, or hepatic insufficiency are

> particularly susceptive to the hypoglycemic action of glucose-lowering

> drugs. Hypoglycemia may be difficult to recognize in the elderly and in

> people who are taking beta-adrenergic blocking drugs or other

sympatholytic

> agents. Hypoglycemia is more likely to occur when caloric intake is

> deficient, after severe or prolonged exercise, when alcohol is ingested,

or

> when more than one glucose-lowering drug is used.

>

> Susie

>

>

>

> ------------------------------------------------------------------------

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> Apply NOW!

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> ------------------------------------------------------------------------

>

> Public website for Diabetes International:

> http://www.msteri.com/diabetes/

>

>

>

>

[Guest guest]

<< You might be surprised to hear this but when I asked the bunch of MDs

that

come around the hospital shaking hands every day, what her HbA1c was, they

said that it hadn't been measured. They also saw no point in measuring it as

it was bound to be very high. I had to really get on their nerves to have it

measured just so that we have a reference point for the next time it is

measured! They reluctantly agreed to take some more blood. I am beginning to

understand what you have against the 'white-coats'. >>

Geez, ... this is truly frightening how irresponsible they are being!

I am just thankful that you have found the internet. If people in this group

or LC-DIABETES can't help you find the information you need, I'm sure we

will all work hard to direct you to someone who can help. I truly feel you

and your wife are on your own in treating your diabetes properly! You are

right to fight to get her the tests she needs ... but that's hard to do,

I'll bet. (You mentioned how unwilling they are to " take advice " from

patients.)

<< They are still experimenting to get the right dose of Amaryl but my wife

is

making it hard for them by not eating the hospital food. She wanted fish for

Ash Wednesday but the only answer we got was that it was a protestant

hospital, if she wanted fish for Ash Wednesday she should have gone to a

catholic hospital! I am beginning to suspect that she must have diabetes

type 2c (type 2 catholic). >>

I laid awake thinking about you two last night, . I really don't think

your wife should be on Amaryl. It is a sulfonylurea ... It can cause hypos

so severe that they can result in coma and death. You emphasized that your

wife is needle-phobic. Amaryl will hasten the day that your wife must rely

upon injected insulin, because it wears out the pancreas. Have her doctors

never heard of glucophage? Can you fight with them to place her on that

instead? (If she is bothered by digestive problems on it, she can start with

low doses and build up steadily. The max. dosage is 2,250 mg daily.) I

strongly believe that sulfonylureas are ill advised for any diabetic - but I

am deeply concerned about your wife especially, because her health is so

precarious.

<< When we asked if they had a nutritionist who could come around and talk

about her food, we were told that the resident nutritionist was concerned

only with advising the hospital about the meals served there. The medical

staff (the 'white-coats')were the ones who decided on the diet to be

followed by individual patients. They are the ones who said that there are

no dietary restrictions for diabetics - eat anything you like! >>

, you know more about diabetes than these " white coats. " For type 2's,

changing the way we eat is the first step in good care. As you discovered

yourself with your finger-sticking experiment, there is a *huge* difference

in glucose reaction between eating, let's say, meat and cheese, versus

eating rice or pasta or bread or cereal or sweets.

<< I am beginning to get the feeling I should go and ask the chaplains (they

have a protestant chaplain in a big office and a catholic chaplain in a very

small corner office) and see if they give diet advice. It is no use asking

the nurses - one of those told us yesterday that fish is not served to

diabetics because it is too rich in carbohydrates. Wow! So the doctors don't

talk to the nurses! She must be thinking about sardines on toast. >>

That is just shocking! Fish rich in carbohydrates!! It sounds as if you and

your wife are stuck in a " Funny Farm " (psychiatric ward), where the mental

patients are masquerading as doctors and nurses!

<< Still waiting for Dr. Bernstein to show up. >>

And don't hesitate to use the internet to do medical research. If there is

anything specific, one of us may be able to help you locate it. We all have

favorite " diabetes books. " One of my favorites is " Protein Power " by the

Drs. Eades. (That book has now been updated with " The Protein Power

Lifeplan. " ) Here is the authors' web site: http://www.eatprotein.com/

Susie

[Guest guest]

Susie

You wrote:

> You are right to fight to get her the tests she needs ...

> but that's hard to do, I'll bet. (You mentioned how

> unwilling they are to " take advice " from patients.)

Well, I suppose I could understand their reluctance if I try. Some patients

can be very trying, I am sure - not to mention their relatives. For

instance, I kept asking them if her kidneys had been tested and all they

would say was that 'they are OK'. Later I summoned up the nerve to ask if a

proteinurea test had been made (it is called a '24-hour microalbuminurea

test here'). The answer was jokingly: 'No, it wasn't necessary because we

could almost see the protein in her urine' (360 mg/l) - so it wasn't 'micro'

any more! I never would dream of 'giving them advice' - I am just happy if I

can ask a half-way intelligent question and appear to understand the answer.

They took pity on me eventually and said that we will have to wait until the

infection finally subsides and then the 24-hour test can be made later.

> Amaryl will hasten the day that your wife must rely

> upon injected insulin, because it wears out the pancreas.

Well, that is what they wanted her to do right from the start but she is

determined to give oral medication a go first. They have decided to set her

up for a baseline BG of 150 mg% to keep away from the hypos but she got near

the first one this evening with 55 mg% at 7 pm. The first shot of glucose

only got her up to 60 mg% at 10 pm so she is going to get some more glucose

right now. The idea is to come up very, very slowly to avoid going to the

other extreme. The next test is due at 1 am when they expect to get to 65

mg%. It is going to take all night to get back up to 150! Her hopes of

getting away with only one BG test a day when she comes home (scheduled for

Saturday) are fading fast. The arrangement seems to be very unstable. I can

already image her doing nothing else, day and night, but taking BG readings

and sipping glucose in tea. This just can't be true!

> Have her doctors never heard of glucophage?

> Can you fight with them to place her on that instead?

> (If she is bothered by digestive problems on it, she

> can start with low doses and build up steadily. The

> max. dosage is 2,250 mg daily.) I strongly believe

> that sulfonylureas are ill advised for any diabetic.

Oh, sure. She is getting one of those, too (825 mg, I think it is). The

digestive problems are there already, no doubt about that, but she

understands the reason and is putting up with them. I showed the

'white-coats' a print-out of the warning from the National Diabetes Center

Sulfonylurea Recommendations (http://www.diabetes-mellitus.org/type2.htm):

>> (2) Do NOT use sulfonylureas in combination with metformin/Glucophage in

any diabetic.

and asked them why they are doing just that, but the reply was that this

applies only in certain circumstances. Since I don't know the technical

reason for this recommendation, I cannot push the matter any further just

yet. They have told me several times that she is lucky she didn't die in the

ICU. Naturally, I cannot even think about the possibility that they don't

know what they are doing. She is on that medication now and is going to have

to give it a try or find somebody to get her onto something else in an

orderly fashion. There aren't many other options, so far as I can see. But I

would still like to see a little more margin for error - this is getting a

little too unpredictable for me!

-----Ursprüngliche Nachricht-----

Von: Susie

An: <diabetes_intonelist>

Gesendet: Donnerstag, 9. März 2000 14:33

Betreff: Re: Sardines on toast (WAS: Sulfonylurea Warnings)

[Guest guest]

Thanks!

I'll post my GlucoProtein readings. I don't know how the one tomorrow will

be, but hope lower than the last.

Re: Sardines on toast (WAS: Sulfonylurea Warnings)

>

>

>Bill Eastman wrote:

>

><< I'm going back to having a Balance drink for breakfast, a balance bar

>for lunch (most days), and a

>regular meal at dinner (NO PIZZA and no pigging out...yes, there will be

>some carbs (baked potatoe). It worked before, and will work again. >>

>

>Sending three cheers and a cyber-hug Bill's way ... )

>

>Susie

>

>

>

>

>------------------------------------------------------------------------

>PERFORM CPR ON YOUR APR!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>Apply NOW!

>http://click./1/2121/0/_/529507/_/952627427/

>------------------------------------------------------------------------

>

>Public website for Diabetes International:

>http://www.msteri.com/diabetes/

>

>

>

[Guest guest]

,

I'm sorry it's taken me this long to get back with you. I, like Susie,

have gone around thinking about you and your wife regarding what to do.

Being a nurse, I am soooo frustrated at the treatment you describe for

your wife. Yes, I've seen that type of attitude here in the States, too.

There seems to be a divide between the older, established generation of

doctors who learned an older, inefficient way to treat diabetes and the

younger doctors who are willing to break free from those old stereotypes

and find out what really works for each individual. There is also a huge

difference in care between a doctor generalist (what we here call a

general practitioner), an internal medicine doctor, and an

endocrinologist (specialist in endocrine disorders such as diabetes).

What kind of doctor is over your wife's care? I'm not really sure how

the medical system works in Germany, or about insurers/insurance and your

ability to choose doctors for yourself. Can you choose your own doctor,

or is one assigned to you? Can you travel to a different location for

treatment?

The reason I ask: one of the doctors on our unit is a specialist from

Germany here to complete a fellowship (advanced training after a doctor's

degree plus lots of research). It's taken me several days to track him

down through the clinics-he usually visits the unit once a week. He

recommended a Doctor Hetzen, an endocrinologist in Ulm-he said that would

be about a two or so hour drive from you. His wife has an endocrine

problem also, and you can imagine that a doctor would send his family to

the best doctor around.

As for now, keep on reading about diabetes, and keep on peppering the

doctors with questions. The only dumb questions are the ones you don't

ask. Encourage your wife to do the same. Ask why they are treating the

diabetes the way they do; what goals do have for her; what are the

specific treatments they intend to use to reach those goals; what

research backs the treatments they have chosen; how specifically does

each of those treatments bring about a positive outcome in the diabetic;

do they believe in tight or loose glucose control and why; what other

issues does your wife face in addition to the diabetes that requires a

change in their treatment of her diabetes; how do these other issues

impact the treatment of diabetes, etc. (You might also ask if they're the

only dumb doctors in town, or are there more to choose from!)

I'm really impressed how well your diabetes has responded to your

efforts. Now see if you can apply the same efforts to your wife's

diabetes. I really doubt the " whatever she wants to eat " remark; that

sounds like someone who either doesn't really know a lot about the

condition or has written your wife off as hopeless. Test, test, test

those blood sugars before and one and two hours after meals to see what

effect specific foods have on her. Encourage her to read more about

diabetes. The more you and her know about diabetes, the better able you

both are to make intelligent choices about treatments. Remember, it's

your diabetes, and her diabetes-it doesn't belong to the doctor or the

hospital. Become outspoken if you must, for " the squeaky wheel " really

does " get the grease. "

Please keep us up to date, !

Go with God, Esther

t2, diet, exercise, insulin, etc.

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Hi, Esther

You wrote:

> There seems to be a divide between the older, established

> generation of doctors who learned an older, inefficient way

> to treat diabetes and the younger doctors who are willing to

> break free from those old stereotypes and find out what really

> works for each individual. There is also a huge difference in

> care between a doctor generalist (what we here call a general

> practitioner), an internal medicine doctor, and an endocrinologist

> (specialist in endocrine disorders such as diabetes).

The 'younger doctors who are willing to break free ... and find out what

really works ..' don't stand a chance here. Why, the hospitals are even

BUILT to suit the 'old stereotypes'. When I asked if they were going to show

my wife how to measure her own BG as she wouldn't listen to me, they

answered: 'No, of course not! She is not using insulin. There is no need for

non-insulin users to measure their own blood glucose concentration.' I

pointed out that my wife had 100% insurance that bought her a single room

and a personal visit from the chief every day - how about making an

exception and having somebody in a white coat show her what to do? They

answered that, in that case, she would have to move down one floor.

The entire 6th floor was filled with diabetics who did not take insulin and

therefore did not get a BG meter and were not shown how to use it. She would

have to be transferred to the 5th floor which was filled with diabetics who

did take insulin and were given a BG meter and were shown how to use it. It

might even be necessary for my wife to start taking insulin to make that

possible. Any other arrangement imposed almost insoluble administrative

problems, conflicts between the various medical staffs, etc. I gave up at

this point. Sometimes you just have to concede that the system wins most of

them.

> What kind of doctor is over your wife's care? I'm not really

> sure how the medical system works in Germany, or about

> insurers/insurance and your ability to choose doctors for yourself.

> Can you choose your own doctor, or is one assigned to you?

> Can you travel to a different location for treatment?

We have complete freedom of choice of doctors and hospitals but once we are

in the hospital, we have to take whoever is assigned to us. Hospitals are

organized as a bureacracy and everything has to take its ordained course.

Showing flexibility would get a doctor transferred to the x-ray archives, or

some such dismal place, I am sure.

> As for now, keep on reading about diabetes, and keep on

> peppering the doctors with questions. ... Ask why they are

> treating the diabetes the way they do; what goals do have for

> her; what are the specific treatments they intend to use to

> reach those goals; what research backs the treatments they

> have chosen; how specifically does each of those treatments

> bring about a positive outcome in the diabetic; do they believe

> in tight or loose glucose control and why; what other issues

> does your wife face in addition to the diabetes that requires a

> change in their treatment of her diabetes; how do these other

> issues impact the treatment of diabetes, etc.

Not the slightest chance of getting any useful information from anybody

except the chief (the 'professor') and he always looked shifty when

questioned too closely - as if he suspected that I was collecting evidence

for a malpractice suit. Everybody else clams up tight when asked for

information (especially the nurses), all that is except the hard-working guy

in the ICU (wears a green suit, not a white coat) who brought her round at

the last possible minute and who, I suspect, knows that he is irreplaceable.

He fed me with continuous straight-up information about the resuscitation

efforts and let me participate as much as he could. From then on, however,

it was a stone wall.

> Remember, it's your diabetes, and her diabetes - it doesn't

> belong to the doctor or the hospital. Become outspoken if

> you must, for " the squeaky wheel " really does " get the grease. "

My wife is outspoken enough for the two of us and she questioned

everything - the medication, the food, the tests. That earned her a note on

the discharge letter (which I tore open to read) that said she was:

'reluctant to accept all forms of treatment'. I rebelled when they wanted

to discharge her on Tuesday while she couldn't even walk properly and still

had not received a number of tests - I told them that they would have to go

over my dead body. After that, they asked me when I wanted her to be

discharged - and abided by my decision! In other words, they went from bad

to worse! Even then they seemed to be resigned to her waking up to a 47mg%

BG every day.

Luckily this morning we found a good guy on the outskirts of town who

concentrates on diabetes full-time, has a large, very competent (and

contented) staff and a no-frills practice with all the facilities he needs.

The way he talks, he sounds like you guys, has a full beard and does not

wear a white coat. In the first five minutes, he put us onto the Bayer

Microlet Vaculance lancing device that enables us to get a good drop of

blood from almost any part of the body that does not have hair! The days of

finger-sticking are gone for ever! Yippee! It works, too! And he gave us a

prescription to get it and the lancets for free. According to him, testing

is the only way to survive. Now where have I heard that before?

Thanks for all the advice

Regards

-----Ursprüngliche Nachricht-----

Von: Esther M

An: <diabetes_intonelist>

Gesendet: Sonntag, 12. März 2000 23:56

Betreff: Re: Sardines on toast (WAS: Sulfonylurea Warnings)

[Guest guest]

,

I really admire your courage and determination -- your and your wife's.

Sounds as if you have found a good doc! I have a Vaculance and love it.

Re: Sardines on toast (WAS: Sulfonylurea Warnings)

> Luckily this morning we found a good guy on the outskirts of town who

> concentrates on diabetes full-time, has a large, very competent (and

> contented) staff and a no-frills practice with all the facilities he

needs.

> The way he talks, he sounds like you guys, has a full beard and does not

> wear a white coat. In the first five minutes, he put us onto the Bayer

> Microlet Vaculance lancing device that enables us to get a good drop of

> blood from almost any part of the body that does not have hair! The days

of

> finger-sticking are gone for ever! Yippee! It works, too! And he gave us a

> prescription to get it and the lancets for free. According to him, testing

> is the only way to survive. Now where have I heard that before?

>

> Thanks for all the advice

>

> Regards

>

>

[Guest guest]

Thornton wrote:

> Luckily this morning we found a good guy on the outskirts of town who

> concentrates on diabetes full-time, has a large, very competent (and

> contented) staff and a no-frills practice with all the facilities he needs.

> The way he talks, he sounds like you guys, has a full beard and does not

> wear a white coat. In the first five minutes, he put us onto the Bayer

> Microlet Vaculance lancing device that enables us to get a good drop of

> blood from almost any part of the body that does not have hair! The days of

> finger-sticking are gone for ever! Yippee! It works, too! And he gave us a

> prescription to get it and the lancets for free. According to him, testing

> is the only way to survive. Now where have I heard that before?

That's great. I'm glad that in spite of all the medical (non) help in

the hospital, that she'll be able to test her bg at home. That should

make all the difference.

Sometimes you have to take the bull by the horns.

--

Dave -- Monday, March 13, 2000

dorcutt@...

t2 8/98 Glucophage & Aspartame

ICQ 10312009

«»

DavOr's daily aphorism:

Nothing is as inevitable as a mistake whose time has come