by Frank Vinicor, MD, MPH, and Jinan Saadine, MD
From the Editor: Dr. Frank Vinicor is the director of the
Division of Diabetes Translation, part of the U.S. Centers for Disease Control
and Prevention. He and his colleague, ophthalmologist Dr. Jinan Saadine, addressed
the annual meeting of the Diabetes Action Network, held in Atlanta, Georgia,
on July 1, 2004, at the annual convention of the National Federation of the
Blind. Then the doctors took questions from the audience. The first part of
the presentation appeared last issue, VOICE Volume 19, No. 4, October 2004.
Here is the conclusion:
Q: I have been having neuropathy problems in my hands and feet. Is there anything
I can do about that? It is irritating and itchy.
A: Neuropathy is a very common problem for people with diabetes. It is generally
viewed as the most common complication, and it can be severe. For some people,
if the bedsheet touches their feet, it just sends them through the wall. There
are a lot of treatments and medicines, which tells you we really don't know
what to do about it. If you go in the bookstore, and go to the nutrition/diet
section, and you see there are 375 books on nutrition and diet control, that
should tell you at least one thing: "we don't know how to do it."
If you go up there, and you see maybe one or two, and they all say the same
thing, that means we've learned something. It's like that with treatment of
neuropathy. There is a list of five, six, maybe seven different medicines available.
Its trial and error. Try one; see if it works; if it doesn't, then try another.
One of them is an anti-seizure medicine; one is a medicine for anxiety. There
are different kinds; try them. Usually you can find one that works, for you.
But it is not easy, and it is not quick.
Q: For people who have diabetes complications, what is the outlook for improvement?
A: It depends on the complications, what they are, and how long you've had them.
How far advanced are they? If one of the complications, for example, is sudden
hypoglycemia, and you are unprepared for it -- people's quality of life is getting
better. The stability of their blood sugar is now dramatically better. If you
are talking about eye problems, and the problems are already far advanced, they
really don't get better. If it's not so far advanced, yes, it can be improved.
The same with nerve and kidney problems. Advanced, established "opathies"
are unlikely to get better, but they probably won't get worse. That's where
we are now, but these are relatively small, and recent, studies, done in the
last two or three years. We sure have a lot to learn.
Q: What is brittle diabetes? How is one identified as a "brittle"
diabetic?
A: Everyone with diabetes is not brittle. People who, in spite of their best
efforts (and those of their doctors), have wide, unanticipated swings and unexplained
falls in their blood sugar, such as they would have side effects: seizures or
whatever, and you can't figure out why it happens -- they are described as "brittle."
You try different insulins, different diets, and different activities, and the
problem continues. That is generally what is meant by "brittle diabetes."
In general, the term is most applied to certain people with longstanding type
1 diabetes.
The Edmonton Protocol has specific inclusion criteria they use, for defining
a diabetic as "brittle." You can imagine after this study came out
in the NEW ENGLAND JOURNAL OF MEDICINE on seven patients, their phones were
ringing off the wall. Everybody with type 1 diabetes understandably wanted to
volunteer for islet-transplant studies. They set up a protocol, and they still
get literally 20,000-30,000 calls a month. And they have a very well-defined
protocol (I don't have the specifics with me) where they review the specific
conditions that have to be met before they will enroll people in studies. It
still is not available for regular clinical care but just for these expanded
islet cell studies.
No congestive heart failure and no coronary artery disease are two of the criteria.
Why? A lot of studies look at people with heart problems and diabetes, but when
you do studies in general, you want some assurance the people who enroll in
the study will be around for a while to see whether the intervention works.
Now they are. It use to be if you had diabetes you couldn't get into any studies,
heart or otherwise -- and you couldn't get a kidney transplant either.
Q: I have an under-active thyroid problem. Is there a relationship between thyroid
problems and diabetes?
A: For some kinds of diabetes, the autoimmune attack can do damage to the thyroid
and cause it to be under-active. I don't know if that is your case. Hypothyroid
treatment is very simple -- we used to love to find people who needed it. It's
a pill, it works well, and people feel better. In internal medicine, it is rare
to find a condition for which you can help people feel better with a single
pill. Once your thyroid condition is treated, if you have pre-diabetes (they're
separate conditions), as long as your condition stays pre-diabetes, you are
not at heightened risk for eye disease or kidney disease.
Q: I am losing my sight from toxoplasmosis. Is there any chance I can volunteer
for the CDC retinal cell transplant studies?.
A: At this stage there isn't any retinal cell transplant that is working, but
in the future you'll have to wait for that. Your condition is one in a million.
At the CDC they look at bigger problems more common in the population. Yours
is so rare. They do a lot of studies, in a lot of areas.
Q: Could you explain what is autonomic neuropathy?
A: In general there are two types of nerves in the body. There are the kind
of nerves that go to your feet or hands, and make sure you aware if things are
too hot or too cold. And there is a set of nerves called the autonomic nerves.
For example, we probably aren't thinking about breathing right now, and we're
not thinking about my heart beating regularly, and after supper tonight, I'm
not thinking about my stomach and intestines digesting food after dinner. All
that stuff is controlled by autonomic nerves -- automatic. They sort of just
carry on and do what they are supposed to do. Sometimes, with longer standing
diabetes, it is not only the nerves in the hands and feet, but also the autonomic
nerves can also be effected. It can be a real challenge. If those nerves are
affected, it can cause dizziness when you stand up, you can't digest your food
as well as you would want to, and your stomach can get large ... That is part
of what is called autonomic neuropathy. Pathy means "damage." Sometimes
people with diabetes get it. It's not as common as peripheral nerve problem.
But It can be a real pain if you have it.
Q: I have been told certain vitamins build up the immune system. It this true?
Which are the good ones to build up immune system. Are there any?
A: There was a study that finished about one year ago, and it looked at vitamins
and antioxidants for macular degeneration. They had a protocol of specific amounts
of zinc, antioxidant and vitamins to be in the pill. The study was done with
people who already had macular degeneration, the intermediate stage of macular
degeneration. And it proved to help in stopping or delaying macular degeneration.
The formula that study used is a little bit on the expensive side. You can't
just go to the drug store and get it over the counter. There is one combination
of these vitamins, and it helps for macular degeneration. It will help slow
the progression of the disease.
Q: I heard something about an extract from spinach to help the retina?
A: I don't know anything about this spinach extract ... I think all of us take
different things, and that's OK. The most important thing is that you tell your
doctor what you're taking. It's better they know. But to date there are no studies,
in fact there are some negative studies, where people with diabetes who were
right on the cusp of developing heart disease or the like were given combinations
of vitamins, but they didn't seem to help prevent heart problems. We still have
a ways to go to understand if and what kind of vitamins might be helpful in
terms of diabetes.
Q: What can you tell me about insulin resistance and sleep apnea, and would
you conclude that in diabetics with sleep apnea this is a neuropathy related
to the diabetes?
A: This whole things about diabetes and sleep apnea (apnea means you don't get
a good night's sleep). There is a breathing difficulty -- you wake up repeatedly,
after building up carbon dioxide in your blood, then fall back to sleep. During
the day, because you haven't had a good night's sleep, you're tired all the
time. That relationship with diabetes has been described now for maybe two or
three years. The studies suggest there is a relationship.
Being overweight alone has been related to sleep apnea. Being overweight, having
weight difficulties, is also associated with type 2 diabetes. As far as I know,
it hasn't been possible to tell whether or not this sleep apnea -- diabetes
connection is related to just weight, or whether, as you're suggesting, it might
be related to autonomic neuropathy of the lungs, which is a possibility. But
I don't know which it is; I don't think anyone knows which it is -- and it is
being actively studied.
There is a condition called central (as opposed to peripheral) apnea. It is
very severe, and can require an individual be placed on a ventilator. It is
infrequent, not very common at all, thankfully, and has little association with
diabetes. I am not a neurologist, but I believe its causes may be specific,
targeted strokes or other brain injury, or perhaps congenital/genetic conditions.
It is peripheral apnea that correlates with diabetes, with weight situations,
and with the autonomic nerves. The damage is not in the brain stem, but in the
nerves after they have left, such as the nerves that enervate the diaphragm
-- that tell your diaphragm every 20 seconds to contract -- to breathe. You
don't think about it -- it just happens. That is the much more common one and
the one that is being related to diabetes. The association has been noted, but
the cause of it, I don't know what it is in terms of diabetes.
Q: Are you familiar with the claims of the companies marketing what they call
"Glyco-nutrients?" These people also claim milk is the number one
cause of diabetes.
A: I don't know about the first part, these "eight essential sugars,"
I don't know one way or the other. I would ask all to be cautious with these
proclamations. All of us are looking for easy answers, and, unfortunately, for
diseases like diabetes, I just don't know. I'm not saying it's not good or not
true, I just don't know.
Let me talk about the milk issue. For type 1 diabetes, there were some studies
which suggested if youngsters were exposed to cow's milk when they were receiving
feedings, there was a protein part of the cow's milk that had an identical structure
to a particular protein in the insulin-producing cell. And the body, once it
saw the cow's milk protein, said "that's not mine" and would produce
these white blood cells to destroy this milk protein, then say: "Wait a
minute, that protein is in my insulin-producing cells; I'm going to destroy
those cells, too." Maybe ten years ago there were these "observational
studies" exploring whether early exposure to milk protein could be a factor
in setting off type 1 diabetes.
There have been subsequent studies -- and these have not shown such an association.
Right now, in Finland, there is a study (Finland has the highest incidence of
type 1 diabetes) where an entire community is exposed to cows' milk, and another
community to mothers milk, and the researchers will look to see whether or not
this milk association has a role to play in explaining type 1 diabetes. But,
there is no consensus about that, in the more recent studies. They don't show
the relationship some earlier studies did.
Q: I've heard that babies who were heavy milk drinkers were more likely to get
type 1?
A: You can look at different studies and get different things. Again, in general
the initial studies looking at cow's milk suggested an association, but the
later studies have not been able to confirm that. So now there is this important
study from Finland, which will look at it prospectively, not retrospectively,
so we will know. These studies take a while -- but we will have an answer.
Q. If you receive a diagnosis of diabetes, but you get your numbers under control,
are you still considered to be diabetic?
A: From 1979 to 1997, there was a category of diabetes called "previous
diagnosis of diabetes." It got confusing, so in 1997 the American Diabetes
Association and the World Health Organization re-did the diagnosis and classification
of diabetes, and they removed that category. So, in general, I think all of
us now are comfortable saying if you legitimately have the diagnosis of diabetes,
it does not go away. If you stay under good control, fantastic, that's great,
but you still have the diagnosis of diabetes.
Q: Is there anything specific for eye care people with diabetes can do to prevent
vision loss?
A: For diabetics, good control is the most important thing. You have to control
your blood sugar. High blood pressure and cholesterol are also risk factors.
These can make it worse. There isn't anything like a pill you can take for eye
care. Eye complications are part of the diabetes, and the best thing you can
do for them is to take care of blood pressure, cholesterol, and blood sugar.
Also, it is recommended you see your eye care specialist once a year. If you
are not a high risk person, meaning you have no background retinopathy, you
can go two to three years, as it takes that long to develop any aneurysm or
retinopathy. But it is recommended you go once a year to the ophthalmologist,
and not just to look for retinopathy. Look for everything: macular degeneration,
cataract, glaucoma, refractive errors, visual acuity, glasses, etc. And get
some regular exercise, ideally walking, 30 minutes five days a week. More would
be better, this is a minimum.
Q: Once you are diagnosed with diabetic retinopathy, how often should you see
your retinal specialist?
A: If you are diagnosed with diabetic retinopathy, you should go every year.
If you are diagnosed with advanced diabetic retinopathy, or are at high risk
for it to become proliferative, then you might be advised to see your ophthalmologist
much more often.
Q: I note every doctor is going to say "early intervention, the sooner
the better." If they see symptoms that may become serious, they send the
patient on to a specialist. Why is it that when a doctor sees someone who maybe
at risk for vision loss or eye problems, they don't refer them to a blindness
specialist until all hope is lost, and they've exhausted everything they have?
How do we start them to think of early prevention, so we don't get to blindness?
I'm talking about the fear some doctors have of telling a patient they might
become blind, or that they ought to think about learning alternative (non-sighted)
ways of doing things; that they might have to change their lifestyle. Some say
they won't talk to you until you are already legally blind.
(Editor's Note: This question, and the next, were answered by Dr. Saadine)
A: That is why I said earlier, really now more work is being done on not just
the clinical definition of visual loss -- but on the functional. What is 20/200,
or 20/40?. It's what is the impact on the quality of life -- not just what is
the number of visually impaired? And, as I mentioned earlier, we should have
plans for the disease and any loss of vision, and we must refer people to low-vision
specialists who can help to make the most of the limited vision
Q: When I started losing my sight, they strung me along, didn't say what might
happen, and couldn't tell me where to go or what to do. They sent me to all
kinds of specialists for medical things, but made me try to reinvent the wheel,
and all they had to say was suggest to me: "Why don't you try and go talk
to some blindness people?" It can't hurt to be prepared, to learn Braille
even if you never need it. It might save your job, or your future.
A: Too many medical people, the last thing they want to do is use the word "blind,"
because they feel they've failed. Blindness to an ophthalmologist is what death
is to a general practitioner. There is a new attitude in the rehab field, as
they have been authorized to look at functional models rather than sickness
models of disabilities.
Blindness is not the end of things. There are so many things you can do with
people who are blind. But ophthalmologists don't have expectations of a person
becoming blind. You're asking for prevention before happening. Like learning
Braille before becoming blind. They don't expect blindness unless it is going
to happen.
Q: But some people will fall into predictive models where they may be 70 percent
likely ...?
A: I think this is a generic problem for a lot of our health care system. Most
of us in the past were trained a certain way. The health care system is set
up for repair, not for prevention. That is the nature of the health care system.
Medicare, for example, will pay the $40,000 to $50,000 to safely and effectively
complete an amputation, but won't pay the 15 cents for the little monofilament
to tell if a person has an insensitive foot, so they know to get special shoes.
That isn't Medicare's fault; they follow what the law said in 1965 and on. There
is an absolute disconnect between chronic conditions in which finding it early
and preventing its progression is the thrust of chronic diseases -- versus a
healthcare system and training that has gone on and is now training, but training
that was just saying: repair, repair, repair. Who doesn't want to be repaired?
But it takes away from finding things early and doing something about it.
One quick comment: this maybe a shock to you, but doctors aren't uniquely smart
(they're not uniquely stupid either); you will find some not so good ones and
fantastic ones and most of the ones in the middle. It's coming out of a system
that was put in place in the 1940s, for repair, and set up for repair, and reimbursement,
and education. And we are dealing with a very different system here, of need.
Q: Last time you spoke to us, you stated many people have diabetes for ten years
before being diagnosed. Is that still valid?
The statement in the study suggested that for someone with type 2 diabetes,
they probably had it for five to ten years at a low level. Now, depending on
how you define type 1, if you define it as having this autoimmune process (normal
blood sugar, but autoimmune going on destroying cells), they have had it for
ten years or more. That is why we are trying to move to find diabetes early,
back to this entity called "pre-diabetes." We now know, with type
1 diabetes, if you have certain genetic structure and have evidence in blood
stream the Beta cells are being destroyed, you maybe can stop it there, before
blood sugar even starts going up. But as I indicated, the earlier studies didn't
show we could do that. They're trying other studies now.
Q: Many of us who have diabetes have put on more weight since we became diabetic.
I feel it is because I have to eat more frequently. My doctors and nurses say
I have to eat three meals a day, to keep my diabetes under control -- and my
body will not digest three meals a day. I didn't used to eat that much.
A: Most people, when first diagnosed, have amazing amounts of calories coming
out in their urine. Remember when we used to test urine for sugar? That was
calories we couldn't digest. You ate it, couldn't digest it, and peed it out
into the toilet. When you first get diagnosed, and treated, and your blood sugar
comes down, all that stuff we got rid of, that went down the toilet, now stays
in your body, for energy. So almost everybody, when they first get treated,
gains weight, over the first three or four days. You retain water, and you drive
the sugar you used to pee out into the cells. Then, beyond that, some of the
medicines we still use today cause us to gain weight. For example, insulin is
a growth-promoting hormone. One of its consequences is your body gets the signal
it should eat. There are some tablets people take which also give that same
signal to eat. There are other tablets now out that don't give us that signal.
I'm not saying one is better or worse; they work in different ways.
For example, people who take metformin (glucophage) generally don't gain weight.
They keep it the same. It may be in part because the medication tends to cause
you to be a little bit sick to your stomach. But -- you don't gain weight.
It's a hard balance, but what you're experiencing is in fact, very common. The
way it's best approached is not to stop the frequency of eating, but to perhaps
decrease the amount you would eat at each meal, and, if possible, increase how
much you burn up, by increasing your activity. The old idea, that you would
have regular mealtimes, I think that's still good; but the amount you have at
each meal, and the amount you could burn up, if you were a little more active,
that's the way we deal with the tendency to gain weight. What you're experiencing
is not rare at all; it is a common story.
Q: What about the combination of diabetic drugs?
A: Let me tell you in general the way we're going, and for people who don't
like to take a lot of pills, boy, the diabetes community is in trouble. It used
to be we recommended one injection of insulin a day. Or, we recommended one
pill. Nowadays, just for blood sugar alone, it's much more common; most people
are recommending combinations. You could take two or three tablets, and each
of them work in a different way. You might take insulin, if you're not on the
pump, two different types, twice a day. The "combination approach"
to controlling blood sugar is now in vogue.
This approach is also now used with blood pressure. Almost all of us [doctors] now assume if you have diabetes, you have high blood pressure. You're going to need at least two blood pressure medicines. We'll tell you to take your aspirin. It's "poly-pharmacy" in 2004 for people with diabetes. The reason is we know from good studies, if we can get the blood pressure, blood sugar, and cholesterol down, you don't have to have the problems. The tradeoff is, taking lots of medicines (and that's a real pain, taking lots of medicines); but the benefit is you keep your feet and your eyes and your kidneys and your heart. It's a real challenge. You're going to see more and more of that, taking a lot of medicine.
I have enjoyed being at your seminar again this year. Thank you again for having us.