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30y.o. – New T1D

So long story short,
I was recently in intensive care & then general hospital for quite some time, due to unrelated issues.

During that time I had daily blood tests for all sorts of things – I started off as a bit of a medical mystery.

My blood sugar was normal for the first week (in ICU), then all of a sudden –
12, 13, 17, 43(!!!). (Oh I’m not from the US… in your units: started at 216, 4 days later – 774)

Seems like a sudden onset according to most.
That said – it’s possible I had been suffering for some time and my stay in ICU had the opposite effect on blood sugar –
I had all the classic symptoms of hyperglycemia for months – unfortunately they also fit with the kidney problems I had – so no way to tell.
(HbA1C can’t be tested yet as I received blood transfusions & had severe anemia before)

Anyway, now I am T1D. Antibodies positive.
Somebody is having a laugh about it, because there is nothing in this world I fear more than needles!!

I am here because I have never known a diabetic in my life, somehow. At least not well enough to know anything. I feel like I’m suffering from information overload at this point. I’m sure I will have many questions. Have been on my own out in the world for about 2 weeks now. Things are still quite variable, I have had a few sleepless nights testing myself due to low readings, and still am higher about half the time than ideal. My biggest difficulty so far is with eating out at restaurants etc. I’ve been underestimating that a bit. Also how am I meant to carry around a bag of sweets if I’m not meant to eat any of them!!

  • #122566
  • Well first off, Welcome to our almost exclusive club of T1D PWD. And welcome to this site.

    As you, your body, have apparently been going through some trauma having hospitalized you for a time, it does not surprise me that you find yourself as a Person with TypeOne; type one comes on from a combination of interacting elements of which one very common factor is trauma.

    I too, 60 years ago, had severe hyperglycemic symptoms for several months before my diagnosis but as a teen aged kid denied that anything was wrong with me until the day I was too weak to get off my bed. I suppose that now with insulin – it may take you months to get a proper balance between activity, food intake and insulin, that you feel really good. To confirm that you actually are TypeOne, I presume that soon your doctors will order a c-peptide test; c-peptides are produced in a “normal” body alongside insulin and low or no c-peptide is confirmation of TypeOne. My c-peptide is >0.01% or indictable.

    Eating at restaurants is difficult in not knowing the amount of carbohydrates in a particular meal; a chef at a classy restaurant warned me a few years ago that restaurants often pack carbs of some sort into most foods they serve. Last evening a couple of hours after eating out I was really pleased to have a BG reading of 90mg/dl [5.0mmol/L]; probably due to my wife’s cautioning me that the carrots were sweetened – so I doubled the carb count for them.

    I suspect tat over the next few months you will have many questions and observations – visit here often and share your observations and experiences. There are many people here who will listen to your thoughts and share their experience with similar situations – oh yeah, VENT here too! After 60 years, I’m still learning.

  • #122568
  • I so-o-o sympathize. I was diagnosed at 47 years old with Type 1. Of course, at first they thought it was Type 2 because of my age. I had never known any one else with diabetes either, including none in my family. It took me a long time to figure it all out.

    Yes, you need to carry around sweets of some sort to treat lows. If you are tempted by them, then maybe carry around some not-too-tasty glucose tablets. Actually, if you body (not your mind, you will notice the difference) craves sweets it can mean that your blood sugars are high and you need insulin. A doctor told me that it means that your cells are crying out for sugar. There is sugar in your blood, thus the high blood sugars, but it’s not getting into your cells.

    I am 61 and just now figuring it out to some extent. I am eating lower carb and that helps me. I’m not saying that’s the path for you. Dr. Bernstein’s book helped me to figure some things out. Our meters can be up to 20% off, either way. and the action of our insulin in our body can also vary by around 20% due to a variety of factors. So 20% of a smaller number means less problems.

    Btw, in his book he also explains the pain free way to inject. Don’t slowly push the needle in, for example. Good luck on your journey.

  • #122576
  • pssssst, @cartesian_dreams, I have a secret: no one likes needles.

    it is very common for some sort of illness, even trauma, right at the start of troubles with blood sugar some say it could be related and I think I get it – that something caused a programming error in our antibodies which caused us to eat our own islet cells. . it’s also very common to have “no family history”. I would say that if it had to happen, it was brilliant to have it happen while you were already in a hospital.

    all kidding aside, it’s also common to start making insulin again for a little while (honeymoon) and it’s also very difficult to maintain perfect blood sugar. even with many years experience and a pump, I get numbers all over the place too. check back in, we all hope you are doing ok.

  • #122583
  • When I was diagnosed with T1D 60 years ago it was a different world. I had a common feeling even now that I was the only person 15 years old in the world with T1D. Blood sugar tests took two days in the lab for results. I used urine tests to see if sugar was spilling into my urine. Diet Rite was the only sugar free soda. I was taught the pyramid system for my meal plan. I was participating in many music activities in my home town of Houston, Texas. My internist was a brilliant man who taught me that taking daily injections would not interfere with my music. I was a happy young T1D.

    My daily activities ware: Rise early; do a urine check & wright the result down; take a shot of Lente and Regular insulins & wright down the amounts and time; Waite thirty minutes for the insulin (from pork and cattle) to be absorbed & then eat breakfast; walk to school with sugar cubes in my pocket in case of a low, do another urine check before lunch & eat lunch; have after school rehearsals, lessons, more evening rehearsals around town and then home for supper after another urine check, evening shot of both lente and regular insulins. If there were reactions, I wrote it down, all the urine checks were written down. All of these records were taken to my doctors appointments for discussions, recommendations for improvements in exercise-meal plans-and changes for my insulin amounts. HgA1C has not been developed.

    My written records were my life line for daily, weekly, and monthly adjustments from my doctor.

    Skip to today. Rise early: check CGM & calibrate with blood meter check; set pump with Humalog insulin for breakfast bolus; have breakfast; check BG before lunch & calibrate CGM before lunch bolus; check BG before dinner and calibrate CGM before dinner bolus; check BG before bed and calibrate CGM for the night. Get up early and do it all again. Print out weekly blood meter records for study and needed adjustments to bolus and basal settings.

    Suggestions for all of us: 1. Keep records for adjustments to routine: 2. Records include daily exercise, food, and insulin amounts with times taken: 3. Records are information to refine our actions — it is not a graded activity. I have not gotten it right yet and I am still a happy person. My A1C has never been over 7 since the test has been used after the DCCT ten year study was completed about forty years ago. I have no complications from diabetes.

    Patience, persistency, and an occasional outburst of civil disobedience. Establish good habits and in your future you will not have to even think much about what your are doing to take good care of your self; it will be done habitually.

  • #122588
  • It will get better. A year ago I was diagnosed with T1D at 36. It started slowly and I just lost weight a little at a time without trying. No girl in fashion will complain about weight loss. After about 6 months of gradual weight loss I started experiencing thirst, dry mouth, frequent trips to the bathroom. And then my weight started dropping quickly. When I tried on a dress and my boss looked at me with a little bit of shock/ horror, I finally pulled my head out of the sand and went to see my doctor. I was in the hosyfor three days- blood sugar was 700, a1c was 15…

    It was hard for me because everything I read or found was geared towards children and their parents- very little out there for those of us diagnosed in our 30s+ but my diabetes educator put me in touch with another patient and we email or text now and then and that was very helpful to have a buddy. Ask doctors/ nurses/ diabetes educators if they can connect you to other patients interested in talking- you might be surprised and it was a huge help for me.
    It was scary at first, but we are lucky- technology has advanced so much. I have a CGM that’s really helpful because I can see the effect of what I eat- I discovered that if we have a team birthday at the office I can take my insulin, eat my cake, then walk up the 5 flights of stairs twice and my blood sugar never goes over 150! It’s these kinds of hacks that get you they the day. I was also afraid of needles- I used to pass out- but I am completely used to the needles now- I use the pens- it’s a little less needle-like and very easy to handle.

    Good luck on your journey- not sure if there is a way to direct message on here, but if so feel free to reach out to me!

  • #122591
  • I am new to T1D also. Diagnosed 6 months ago after ICU admission for DKA. It took awhile to get the balance of food, exercise and insulin. My first quarter a1c was 6.2, so I’m doing ok. My doc is great. He had me first being conservative, being in the 200s was better than going hypo. As I got more comfortable I got more aggressive with the insulin. I switched to lower carb diet and the fluctuations are much fewer. Good luck and be patient with yourself

  • #122707
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