Hi! I apologize in advance for the length of this post, but you guys seem like a gold mine of information and experience. I've already learned a lot reading through the forum and researching. I feel compelled to lay it all out here in the hope that you all will be kind enough to answer some of my questions, even if they seem silly :-)
I'm a 33 year old woman dx'ed 2 weeks ago. I'd been in a bad state for months. I was exhausted, achy, loopy, cranky, with loads of fluid in/out, ravenous hunger, boils, abscesses, colds/flus, blurry vision, headaches, high body heat, super dry skin, and recently, yeast that won't stay gone. I'd also lost about 20lbs while eating massive amounts of food. I thought that part was a miracle, ha!
Q- Are all these symptoms common? Will they all go away when my bs is more normal? Any tricks on dealing with these issues?
I finally saw my GP, but he wasn't really concerned and didn't get any tests done. Luckily, I had an obgyn appt soon after, and she agreed to do blood work. I was surprised to get a call from her early the next am. She told me I had severe diabetes and that she'd made an urgent appt with an endo for me that day. She's awesome! My blood sugar was about 500, and my A1c was 11.8.
Q- How dangerous was it to go around like this? What would've happened if I hadn't gone to that dr? Do you think it's likely my body was damaged from having my bs so high for possibly months?
At my appt with the endo, I was given a novolog pen, 70/30 mix, and a glucose monitoring kit. My instructions were to test and inject 10 units 3x/day before meals with 60-85 carbs each. My bs stayed in the 400's.
My next appt a few days later covered more information and answered some questions, and I was put on a schedule to slowly increase my dosage to bring my bs down. Blood was taken for a lipid panel, metabolic panel, and antibodies.
Over the next 10 days, my bs was between 250-400 while I ratcheted up my insulin to 20 units 3x/day. My thirst is less, but I still feel like a mummy... dried up! My infections are gone, but I must take diflucan every 4 days to keep yeast away. I swelled about 10lbs so far and have a constant headache. I still get loopy, hungry, and super tired. Exercise (even heavy housework) makes me feel AWFUL.
Q- Is it normal to still have these symptoms? Will this all stop once my bs are under a certain #? If so, at about what #? What's causing the headache? Will anything make it go away?
My last (3rd) appt was yesterday. My endo dx'ed me as having type 1 due to the presence of GAD antibodies (8.1 U/mL) and the way I presented. I'm still surprised that it's not type 2, I didn't even know that adults can just suddenly have type1 D before all this! I was negative for the other antibodies. I switched to 4 meals/day (and 20 units novolog mix before ea meal) with a goal of 50 carbs/meal. Told to only test before each meal.
Q- Is there any way it's not type 1? Are there any other tests that could give more insight, or a possible change in dx? Is there anything I should ask my dr to change his instructions on? Is there anything else I can do right now to improve my progress?
I'm concerned about my other test results. Dr. says it's likely all from the high bs, but I can't find much info on internet searches.
My microalbumin was high (28 ug/mL, normal 0-17), and the microalb/creatine ratio followed suit (69.5 mg/g). I was told to use less nsaids (so hard w a bad back!) and go light on meat consumption.
Q- How bad is that? Is it likely that my kidneys will go back to 100% with better bs? How do you know when there's permanent damage? Is high protein from veg, soy, dairy, and grains ok? How much will eating meat affect me? Is there anything else I can do to be kind to my kidneys?
My triglycerides are crazy high at 959 (0-149 normal), cholesterol is 357 (100-199 norm), hdl is low at 30 (39+ norm). I was instructed to eat low fat, retest later.
Q- Anyone else ever have numbers like that? Did they go to normal quickly once your bs was ok? Am I at risk for any extra problems right now, assuming those levels haven't been a long term thing? What do I eat??? Does having four meals consisting of 400-500 calories, 50g of carbs, low in fat, and no/low meat seem ideal for me? Any suggestions?
Lastly, I want to lose weight. I've been overweight for over a year now, and really want to get back in shape. I spent the 5 months after the 'big gain' eating clean (veggies, lean meats, good fats, high fiber carbs, some fruit, etc), lowish calories (1400-1800/day), and doing 4 hrs weight training, 5+ hrs cardio per week. I've been heavy before, but was always able to get back to normal this way. After 5 mo, I did look a little better, but didn't even drop 1 size. Scale showed only 3lb lost. I got frustrated, the mega hunger had started, and I went back to poor habits. That's when I started losing weight due to the D. Not a magical metabolism fairy, much to my disappointment ;-)
Q- Was my inability to lose weight related to D? If not, any theories? Any advice on effective weight loss strategy? Is there anything different I should do because of the D? Is there anything that will lessen the hunger? Are there any prescriptions or supplements that would help me?
If you made it this far, THANK YOU! I appreciate any and all guidance you feel like sharing.
Congratulations!! You are doing the right thing in taking it slow- I think I pushed my body a little too hard.
Thanks. Sorry you had a rough time. It looks like there are pro's and con's for both the slow path and the fast.
when i was diagnosed alomost 11 years ( i was diagnosed in march of 2002 so i count tht as the begining of a year ) my blood sugars were over 700 and i had many of the symtoms you have. how you feel usually depends on your blood sugars and its diffrent for everyone. i start feeling low when i reach the 80s and i normally feel fine until i reach the 230s. once your blood sugar drops you will feel alot better! if your still haveing really high numbers after 2 weeks you need to talk to your doctor cause you probably need more insulin. high blood sugars like that for a constint amount of time can lead to kidney damage, blindness and other complications. ( im only 14 and so i pobably dont know as good of info like others on here )
Thank you Anna Banana! :-)
Hi palominovet. About needing more insulin as time goes on: it's all very individualistic. My insulin needs have been pretty much the same for many years, diagnosed (LADA) in 1993. And btw, going way back to conversations here, my basal units have always been lower than bolus units on both MDI and pump.
Hello and welcome. I'm sorry to hear about your diagnosis. You've gotten some great advice, and I hope you feel a little more on top of things.
My dx was in July 2008 at age 31. I had most of the same symptoms that you described, only I ended up passed out in the kitchen and woke up in the ICU. I ended up spending eight days in the hospital so sick they wouldn't let me drink water (and you know how thirsty I felt) on IV insulin and fluids for the first five days. I remember, though, in the hospital, with my mouth dry and my skin burned off from the adhesives for the LEDs, I felt better than I had in months. And I kept getting better, mostly because I got on top of the diabetes.
When I got home, I was still lethargic and weak, not wanting to climb stairs or really get up off the couch. I had terrible edema from the hospital, headaches, nausea (that one ended up being caused by a pill they'd given me to raise my Vit D which ended up giving me toxic levels of calcium), waves of dizziness (that was possibly the Vitamin D, or maybe the aenemia), but I felt better than I had before the hospital. I really didn't like DKA. If you can avoid it, I'd recommend that.
I think it wasn't until around October that I actually started waking up in my target range (and started feeling more better). At the hospital, I talked with a CDE who told me basically, I'd worn my body out. I'd been high for so long that my body had hidden sugar anywhere it could until it could find a way to deal with it. Now that I was on insulin, it was releasing that sugar, so my insulin was dealing with what I was eating now, plus residuals from toxic levels of sugar. As a case in point--just after dx, my doctor put me on roughly 32 units/day (I was on lantus and R--I switched to humulog and then novolog within a month). Once my blood sugar was more stable, I went down to under 20 units/day (I'm now three years and 70 lbs later at about 24/day(I need to lose weight)).
In the hospital, I was having kidney issues (it's actually a real problem with DKA because of the stress the kidneys go through trying to get rid of the sugar your body can't process) but they completely went away--I never went back after the hospital to see the kidney doctor.
You seem to be really on top of things. Good luck. Keep researching--data is your friend.
Hi Teowyn thanks for posting. I'm feeling pretty good, thank you. All these answers are very helpful. Thanks crazy they wouldn't let you drink. They should've let you had at least ice chips or something for your mouth/throat.
I also had very low levels of vit D, and was put on a prescription high dose. I didn't think about it driving up calcium levels. Thanks for sharing that, I'll be sure to keep that in mind. My Ca level was already in the high normal category before I started taking the supplement, I'll need to watch out for going to high.
That's interesting that you needed more insulin soon after dx. I'm hoping my need will diminish. I'm on the novolog 70/30 mix for now, and I'm taking close to 90 units a day. Though it would seem I'm insulin resistant.
I'm glad your kidney issues went away! Thanks again, and data is certainly a good friend of mine!
They eventually let me chew ice--as long as I kept a bucket handy (TMI, right?).
Just out of the hospital they put me on Rocaltrol, which is something that is supposed to raise both calcium and Vitamin D. That's the only prescription that I've ever quit taking without telling my doctor (the side effects were nasty)--but when I got blood work done and the Ca was high (D was at about 11) he agreed that I shouldn't take it. Once the Ca was down,he put me on mega doses of D, but we keep an eye on both. I'm down to 5000/day now (and my Ca levels are high normal).
Your insulin needs are going to fluctuate just like everything else with this disease. Just after the hospital, I was using more insulin than I have at any point since then. By Dec 2008, I was on my lowest dosage ever, but my weight had also dropped to about 115 lbs. I've gained a lot (I don't exercise like I should) so my insulin dosage has gone up, but right now I don't take as much as I did right after dx.
I think the most useful thing I've learned is how to make adjustments to my insulin dosage on my own. Last week, after dealing with high mornings on Levemir for about two weeks, I split my dose on my own. It's working so much better that I wish I'd done that from the beginning.
That's the thing about it. Everything is going to be a learning process--nothing in your body is static. All systems in your body are interconnected, so the absence and manual injection of a hormone like insulin is going to affect everything else.
Ah, and I remember the day I got out of the hospital and went to get my perscription--two vials of insulin, syringes, lancets, test strips--it ran us over $500. The next day I filled out the paperwork for prescription assistance until I could get insurance that would do prescriptions (at dx, I had major medical, but no prescription help). It was nearly a year before I got that straightened out.
Teowyn, thanks for clarifying. I do wish our bodies were a little more predictable!
I have the feeling I'm going to take issue with my insurance as well. They've already made some errors that I need to get fixed.
"Reply by snarkymonkey -- Wow, you all take WAY less than me. Does anyone here take as much as I do? Anywhere near 80/90 units? Does this mean I'm very insulin resistant? Eating too many carbs?"
(Hey there, I moved this down because it ran out of reply levels.)
At first 80/90 units in a T1 seemed awfully high to me, but I found this link for understanding how the starting dose might be calculated, and there is quite a huge range in how much insulin is needed by each person to cover carbs:
It says (regarding the possible range): "Generally, one unit of rapid-acting insulin will dispose of 12-15 grams of carbohydrate. This range can vary from 6-30 grams or more of carbohydrate depending on an individual’s sensitivity to insulin. Insulin sensitivity can vary according to the time of day, from person to person, and is affected by physical activity and stress."
Diabetes is not a "one size fits all" disease!
Sorry, I don't remember if they measured her c-peptide levels or not? Too many replies to sift through.
I still have a c-peptide of 1.1. So, once the b-cells I have left get over glucose toxicity, they'll start pushing out a little insulin here and there which will further confound things..
Also... I may be on a low level right now, but it's not entirely controlling it... especially when they tried to set me up with a I:C ratio of 1:20. My body laughed at that and it sent my glucose skyrocketing. The 'Using Insulin' book came in the mail the next day, and I love it. It is helping so much. I like it much better than Think Like A Pancreas, though that book has been a good read as well. It's just somewhat basic.
I used the website LaGuitariste sent and I suppose based on weight 35 units is where they might typically start someone my size out at. But as already said, everyone is different.
Exercise is very important for everyone, especially if you have diabetes.. it can help control your BG a little better. I like to play 'Dance Central' for the xbox kinect (yes, i will admit it!) and it helps bring down my glucose. If I could kick myself into a regular routine, there's a good chance that'll cut down on the amount of insulin you need too..
Also, depending on how much you want to read about the disease... there is an endocrinology textbook on Type 1 Diabetes that I just got and is wonderful because it explains some of the major theories and incorporates current literature as well as talking about treatments and such..
The ADA also has a book on clinical management of type 1 diabetes, and though I have gotten it, I have not read through much of it yet.
Having information makes me feel better, for some reason.