Dx’d young and out of control

Chrissy wrote:
>>> Needless to say I had many years of uncontrolled diabetes and was in the
hospital ALOT!!! Thank God I dont have alot of complications. I do have
several but it could have been alot worse. Since I have been diabetic for
33yrs now. Thank God we both survived the early years right. Take care.
Chrissy >>>

Chrissy,
I too was dx’d at 11 and had uncontrolled DM for a lot of those years. Mom
said I often had-fruity smelling breath but since she expected me to die
anyway, it was probably just a confirmation to her. But my Q to you is, what
put you in the hospital? When I was 23 and pg I was vomiting and sick *with
flu* and doctor made a house call. He did an acetone test (no ketones then)
and it turned purple so he admitted me, but we never took me to the hospital
for anything else - other than the coma at dx. What were your indications to

go?

21 Responses to “Dx’d young and out of control”

  1. patience_15 Says:

    When I was younger I wasnt in the hospital but in my teens and early 20s I
    was. I was in a coma once for a night. I had been sick at home (I think it
    was just because my BGs were out of control.) I was taken to the ER where the
    last thing I remember is getting a cathetar and begging for water. In my 20s
    and up until the pump if I got the flu I usually ended up in the hospital
    because my BGs would soar and Id be spilling ketones like crazy. I have
    spent alot of time in the ER also for the same type thing. Back when I was a
    kid (after diagnosis) I remember being thirsty all the time. Im sure I was
    never in control. My Mom never was and still isnt good about going to the
    doctor. She would never take us unless we were dying and even then it was
    well OK. I had appendicitus once and she wouldnt take me to the hospital
    until the pain got so bad I couldnt take it. Anyway thats another long
    story. I dont know if this answers your question or not. Chrissy

    PS: Before pumping I was considered a brittle diabetic. My BGs would

    fluctuate greatly sometimes for no apparent reason.

  2. Olin Ok Says:

    Your remarks bring up one subject that has always bothered me; maybe others can
    comment.

    What is a ‘brittle’ diabetic?

    It seems to me that any Type I is by definition ‘brittle’. The term is
    meaningless in the modern concept of the problem.

    Most (probably all) Type I diabetics will go up to the moon and down to the zoo
    with minimal difficulty if care is not taken in treatment.

    David

  3. patience_15 Says:

    To me brittle means that even if care is taken in treatment you have ALOT of
    unexplained BGs that vary greatly. I did everything I was supposed to.
    Followed all the rules…even made a flow chart of my BGs and still had
    trouble even w/the insulin adjustments the doctor made. So this to me is
    what being brittle is. Chrissy

  4. Olin Ok Says:

    Good point!

    But, I remember back in the 1950’s, before pumps and even tight control (except
    at the Joslin Clinic), the term ‘brittle’ was used to differentiate types of
    type I patients.

    I think that was a bum description in the context of the times. I think it
    more applied to MD’s who were treating most patients with one injection of NPH a
    day and nothing else; those who had problems with the regimen were by definition
    ‘brittle’.

    David

  5. Raymond Melendez Says:

    Funny, I was just contemplating this the other day. I think the
    definition depends largely on who is using the term. A lot of older,
    or poorly informed doctors consider anyone who doesn’t have their
    blood sugars below 200 at all times brittle. Others consider anyone
    who has large swings brittle. Still others, and this I think is the
    most informed school, consider brittle to be difficult to control due
    to problems with absorption, major insulin intolerance, and poor
    response to treatment. Of course there are those who believe that
    brittle diabetics are always those who don’t pull their weight in the
    team control model, or who are non-compliant patients.

    I’ve always had extreme swings and a super-sensitivity to insulin.
    My body overcompensates to low blood sugars on an irregular basis.
    Before the pump I would often go for treatment of ketoacidosis while
    my blood sugar was registering low, simply because the rebound highs,

    followed by the rebound lows would completely drain the sodium out of
    my body. The only doctors I ever had label me as "brittle" were
    those who believed my control issues were totally due to non-
    compliance.

    I wonder what definition for the term "brittle" they are using in med
    schools these days? Maybe I’ll try contacting someone at IU Med and
    see if I can find out!

    suzanna

  6. Randolph Fawn Says:

    I’m supposing IU med is Indiana Univ.? Are you in Indiana? I’m in
    north-central Indiana. We have at least one other one here from central
    Indiana.
    Jan (~_^)

  7. Raymond Melendez Says:

    Yes, IU is Indiana University. I am in Fishers/Indianapolis. I went
    to IUPUI for several years in a bio-chem major. I also worked at IU
    Med just before they become Clarian (the announcement went out just
    weeks before I quit). I also have some friends in another support
    group who are approaching the Dean of Medicine re: autonomic problems
    and proper education of future physicians. So I might be able to get
    some really interesting information re: the actual definition of
    a ‘brittle’ diabetic. It may take a while though. I’ll keep y’all
    posted.

    Suzanna

  8. Randolph Fawn Says:

    Suzanna,
    I’m supposed to be in Indy 6/23 and probably 1:00 p.m. at Shapiro’s Deli, 800
    Block of S. Meridian - with a group of ‘netters if you’d like to meet.
    Probably at least 2 others from this group will be there, too.
    Jan °Ü°

  9. sabine170 Says:

    David,
    Being an "oldie" like Chrissy, brittle was used when now they say unstable.
    And no it does not fit all Type 1’s. As individuals our bodies all respond
    differently, as you know. Some of us we very "brittle" or unstable during
    growth spurts. Some of our bodies are more reactive to adrenaline. Some of
    our bodies are more responsive to hormone fluctuations. As adults many of
    us respond to anger, worry or stress differently. Some go high and so go low.
    This is only my opinion and understanding of what was meant as brittle.
    Gail

  10. patience_15 Says:

    That would be interesting to know. I never knew there were so many different
    meanings for brittle. Hmmm…… Chrissy

  11. jerrold16 Says:

    Actually, I believe "brittle" is one of those terms which has fallen out of
    use, like "juvenile" diabetes and "borderline" diabetes. And no, don’t quote
    me on that! :-) And will you hear drs. still use it–of course, especially
    GP’s who are not diabetic specialists.

    My understanding of "brittle" was someone who did what they were supposed to
    do, but still had wide swings in bg’s, even over a very short period of
    time–say, from 30 to 400 and back within an hour. I’m using an extreme, but
    you get the idea. In other words, diabetes which was almost impossible to
    control, despite best efforts..

    Patrick
    The NC bluegrass pickin’ pumper

  12. Randolph Fawn Says:

    > That would be interesting to know. I never knew there were so many
    different
    > meanings for brittle. Hmmm…… Chrissy

    Including peanut? ;)

  13. Randolph Fawn Says:

    And, back then we got one shot a day of NPH/Reg mixed with just those awful
    pee tests and NO HbA1c’s yet either. We did know when we hit a low, though,
    and often would eat the fridge to get out of it. The best thing about the
    *Good ol’ days* is, they’re GONE!

  14. colin_140 Says:

    << Your remarks bring up one subject that has always bothered me; maybe
    others can comment.

    What is a ‘brittle’ diabetic?

    It seems to me that any Type I is by definition ‘brittle’. The term is
    meaningless in the modern concept of the problem.

    Most (probably all) Type I diabetics will go up to the moon and down to the
    zoo with minimal difficulty if care is not taken in treatment.
    >>
    Hi David: for those of us working in the hospital and office, we called
    diabetics "brittle" when their levels would ping pong and not stay stable.
    The was before the onset of pump use. We’re learning so much more. If you
    want to check it out further go to aace.com (clinical endocrinologists)

    there’s a substantial printout you might like to download or make a hard copy
    of….Joan:))

  15. colin_140 Says:

    <<
    But, I remember back in the 1950’s, before pumps and even tight control
    (except at the Joslin Clinic), the term ‘brittle’ was used to differentiate
    types of type I patients.

    I think that was a bum description in the context of the times. I think it
    more applied to MD’s who were treating most patients with one injection of
    NPH a day and nothing else; those who had problems with the regimen were by
    definition ‘brittle’.

    >>
    Very True David, and still is a poor excuse that is still being used.
    Diabetics should be followed by endocrinologists, not general practitioners
    or internists. I tell my HIV + patients the same thing…Joan:))

  16. Randolph Fawn Says:

    > Diabetics should be followed by endocrinologists, not general practitioners
    > or internists. I tell my HIV + patients the same thing…Joan:))

    However, I’m thinking of switching to an internist who specializes in DM cuz
    my endo is not keeping up with what he started almost 20 years ago. He is so
    far behind the pumping scene it’s pitiful. I got a phone call the other day
    from one of his patients endo had call me to give him some websites on DM -
    this pt needs help. The CDE (whom I have not seen) says it’s ridiculous to run
    more than one basal a day! There are internists around here who have far more
    knowledge about pumping than the *best* endo.

  17. Bert Gould Says:

    My current doc is an internist who is also a board certified endo. A major
    portion of his practice is a diabetes clinic and he employs a CDE and dietitian.
    When I was first dx’d, my regular doc sent me to an internist/diabetologist. In
    some ways I really liked him and he did a good job, but it was clear he was
    accustomed to T2s. He completely missed my T1 dx and DKA. He also told me that
    I
    only needed to test 2x a day (that was after my re-dx to T1). When I called him
    late one Friday afternoon with 400+ BG and very large ketones, he suggested I
    meet
    him at the hospital — the NEXT DAY. It took lab work to finally convince him
    that I was a T1 and not a T2. Once released though, he called me often at home
    to
    see how I was doing and got me an appointment with a surgeon pronto when my
    gallbladder needed to come out. But overall, he was an internist/diabetologist
    stuck in the past, not interested in pumps, MDI or tight control. The *right*

    internist can make a world of difference.

    Connie

    J Hughey wrote:

  18. Olin Ok Says:

    Joan,
    That aace.com site is great! I presume you mean the document titled

    ‘revised diabetes guidelines’ about 43 pages. Since I have double sided
    printing capability, it looks like a keeper.

    David

  19. patience_15 Says:

    VERY FUNNY!!! (You are too silly Jan.) Chrissy

  20. judith600 Says:

    > wonder what definition for the term "brittle" they are using in med
    > schools these days?

    From what I’ve "heard," they are trying to ‘do away’ with the term "brittle
    diabetic."

  21. Raymond Melendez Says:

    Jan,
    Well, I’ll definitely try to make it to Shapiro’s…I might have a
    small time conflict, but can hopefully work it out! Sounds like a
    good time!

    Connie,
    Yes, there is a pump group that meets at Roche. I haven’t managed to
    make a meeting in a while, and they’ve changed their schedule. I
    think they are having meetings every other month. I got a snail mail
    postcard, but who knows where it ended up? (I’m not much of a house
    keeper, but that is in the process of changing!) The only reference
    I can put my hands on just now is a Dec 2000 newsletter from the
    Indiana Diabetes Center (IU Med). You should be able to get actual
    dates/topics by calling 274-3500. In the past it was on Monday or
    Tuesday evenings around 6:30 or 7:00.

    Suzanna

Leave a Reply

You must be logged in to post a comment.