My story, with lots of questions! New type 1

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.

My condolences upon joining the T1 club.

Like you, I was hoping it was T2 but nope I got T1. I wouldn't let your current symptoms faze you because once your sugar levels lower over the next few months, it will be a much improved landscape. You will feel a lot better in just a few weeks.

Welcome! I'm glad you got tested and started down the path to managing your Diabetes. And it IS a path, there is lots to learn and lots to do, but try not to get overwhelmed. Take it one step at a time.

But yes, your symptoms will go away as your blood sugar gets stabilized. I wouldn't worry about what "might have happened", or even much about "damage done". Complications come from a prolonged period of time spent high. Your goal right now is to reduce that time by working to get your blood sugar in target range.

That being said, I'm concerned about your treatment. 70/30 mix is a pretty outdated type of insulin, which is very hard to finetune to meet your exact insulin needs. Ditto for "fixed doses" of x amount of insulin per meal, unless you are going to eat the same exact thing per meal, which I doubt you want to do! Much better is a basal (long acting) insulin for your background insulin needs and a rapid acting insulin for meals. The dose of your bolus (rapid acting insulin) is best determined by something called an Insulin Carb ratio which is a way of gearing dose to exactly what you are going to eat. You need more insulin for a plate of pasta than for a salad! I highly recommend the book Using Insulin by John Walsh to get you started on learning what you need to know.

Four meals a day, 400-500 calories, 50G of carbs is a lot even for someone who does not want to lose weight! You probably don't need nearly that much and the less carbs you eat, the less insulin you need, the more likely to lose weight. Finally you were told to only test "before each meal". Most of us test much more than that. Especially in the early days, you want to test two hours after a meal to see how your insulin dose and the food you ate is working to keep you in target range. Then you can make decisions about which foods in which amounts work for you.

To say relax is hard, I know. But you've come to the right place. Get the book, talk with your doctor about a more up to date insulin regimen. And keep asking questions here. There's a lot of knowledge and experience here. And I want to repeat, it WILL get better. As your numbers come down, your symptoms will subside and you will be a whole new woman!

i'm sorry to hear you had to join the type 1 club. yes, all those symptoms are common..i'm sure you feel like 'crap'. honestly, you'll feel bad, maybe worse as your blood sugars start to takes time for your body to readjust..but you're on your way. take it slow..know you're doing the right thing, this is a tough disease but we do it. i agree with zoe, you need to be testing many more times a day, I was told at least 8 when first diagnosed and put on insulin. i'd suggest a different (basal - bolus) insulin regime and look again at what they told you about foods, calories, carbs. your cholesterol, BP..all that will come down once you get your blood sugars stable..little by little. My microalbumin was high & also my microalb/creatine. That too came back to normal. It's protein in the urine...your kidneys are fighting a bit here. You'll gain weight initially but it will stabilize..and I too had horrible water retention when I first started insulin. One's body is so dehydrated, potassium off, etc...

Hope this helps. I'd make sure to ask about a basal (lantus/levemir) and bolus (humalog, novolog, aprida) insulin regime.

Hi there, I'm so sorry to hear of your diagnosis and your troubles. I have faith that most of your symptoms will get MUCH better with time. When our glucose is high, we are prone to all kinds of nasty infections, but when you get your insulin balance corrected, your immune system will improve and you'll find that the infections will, for the most part, either go away or get much, much better. I don't know about the kidneys, but surely having normalized blood glucose will help there, too?

Excessive thirst paired with excessive urination (i.e. waking up several times in the night to pee), excessive hunger paired with unexplained weight loss, blurry vision, recurring yeast infections, poor healing of wounds (e.g. boils, abscesses and infections that won't heal or heal very, very slowly), feeling lethargic/miserable/tired/cranky, etc. are all symptoms of prolonged hyperglycemia (high blood glucose.) I'm kind of shocked that your general practitioner didn't see all your symptoms as red flags, as they're right on the list for pre-diagnosis diabetes and/or uncontrolled diabetes. You were a very sick girl, eh? Shame on him.

However, you are also very lucky you didn't end up in the E.R. with diabetic ketoacidosis (DKA) which is how far, far too many T1's are first diagnosed. Kudos to your OB/GYN for catching the signs and testing, but she should have done a finger-stick right there and then:

Diabetic Ketoacidosis Symptoms

A person developing diabetic ketoacidosis may have one or more of these symptoms:

  • excessive thirst or drinking lots of fluid,
  • frequent urination,
  • general weakness,
  • vomiting,
  • loss of appetite,
  • confusion,
  • abdominal pain,
  • shortness of breath,
  • a generally ill appearance,
  • dry skin,
  • dry mouth,
  • increased heart rate,
  • low blood pressure,
  • increased rate of breathing, and
  • a distinctive fruity odor on the breath

Now that you're testing your BG's and on insulin, you shouldn't have to worry about DKA unless you're sick (e.g. with the flu where you have trouble keeping down food/liquids.) But it's good to learn the symptoms and keep some Ketostix on hand to test your urine for ketones when your BG is high, and have a "sick day" plan figured out and written down with input from your doctor and/or CDE, just in case.

Re. home testing for ketones in urine:

Excellent books for the newly diagnosed and any diabetic trying to do a better job of managing their diabetes with insulin, dietary changes, lifestyle changes, etc.:

"Think Like a Pancreas -- A Practical Guide to Managing Diabetes with Insulin"
-- by Gary Scheiner, MS, CDE

"Using Insulin"
-- by John Walsh, PA, CDE

"Blood Sugar 101 -- What They Don't Tell You About Diabetes"
-- by Jenny Ruhl

"Dr. Bernstein's Diabetes Solution -- The Complete Guide to Achieving Normal Blood Sugars"
-- by Richard K. Bernstein, M.D.

There is a LOT of information to take in and you will no-doubt feel overwhelmed at first. That is perfectly normal. Everyone feels the same way. (((Hugs!!!)))

Jean, is that you? I find it confusing when people switch their screen names!

Hi! I was just diagnosed on February 10th..

Fasting BG of 293, A1C of 12.4. Did not feel SICK persay, but was drinking upwards of 2-3 gallons of fluids a day... obviously running to restroom a lot as a result, lost 23lbs in 10mos with most of it occurring over a 6 week period in August. Extremely dry skin, yeast issues... really similar symptoms to yours.

They sent me to ER for fear of DKA. Gave me 2 liters of fluids and a Humalog pen for the weekend. Literally, the next day I felt better.

I had some protein in my urine at diagnosis, but did not have any present today. But I have gotten my BG to where it is below 200 most of the time.

Not sure why they gave you the 70/30 mix and don't know anything about it really... I'm on Lantus long acting insulin and Humalog for meals and it seems to be working great for now.. :)

I'm so glad I'm not the only newly diagnosed T1 with lots of questions. :) I wish I could help more, but other more experienced people will be much more helpful.

Yes, it's me, Zoe. I apologize for any confusion. ;0(

That's ok, I'm easily confused!

It sounds to me like you're doing a great job, palominovet!

Drinking all that water is probably what helped keep you out of DKA -- dehydration makes it worse -- and so does drinking high-sugar beverages like fruit juice. That's what sends a lot of pre-diagnosis diabetics into the stratosphere.

I'm glad you're already feeling better.

I am coming in late on this discussion, so I must agree with most everything that has been said here. If you have antibodies, you are classified as a type 1 diabetic, and yes, it happens in adults. It happens more subtly, but it happens. One thing Iwonder is why your endo gave you a 70/30 mixture insulin; rather than a Long acting insulin for a basal dosage and a fast acting insulin for meals and corrections. The one thing that I am sure of is that you will feel better soon after becoming accustomed to insulin. the stuff really does wonders. the only think I can add to what has been said is to get with a CDE to help you count carbs and determine your doses and when to take them, and meet with a nutricianist to get your diet in order.

Good luck, and remember that you can do this. We all have great days and we have bad days, but we are all unique to the rest of the population. Sometimes, being diabetic is good!

Be well; stay in touch.

Brian Wittman

Thank you! I'm trying not to let the symptoms get to me. Having them so long is wearing me down. I have trouble remembering what it feels like to NOT have a headache. I look forward to feeling better, for sure! :-)

Zoe- Thank you for your reply! Luckily, I don't feel overwhelmed or overly worried. I know I have lots of work ahead of me, but I'd been preparing myself for even more dire possibilities, like brain tumors, cancer, and other kill-you-quick-and-painful maladies, so the type 1 dx was actually a relief!

I just feel comforted by information, even when it's just to satisfy my curiosity. The more, the better for me!

My Dr said that my current treatment is a 'coarse adjustment' just to get my bs down to the 100's, and he'll be switching me to 2 different insulins to 'fine tune' my levels. He hasen't mentioned insulin/carb ratios yet, but I'm learning by researching and reading these forums. I ordered all the books recommended here.

My total calories are coming in at 1600-1800 on this plan. I'm still super hungry, so it doesn't feel like much food right now. How low do you recommend going? I normally have a hard time staying at/below 1400-1600cal, unless I'm really inactive. The amount of carbs does seem high, it's actually a little higher than I'd normally eat. Why do you think he wants me to eat that many carbs?

I've already started to test more, mostly because I've been getting hypo-like feelings, but I'll start testing as you suggested. It makes more sense to do that, even though the endo says its not necessary. Thanks again!

LaGuitariste- Thank you for all the info and kind words!

I wonder if I did have DKA, I had the majority of those symptoms, though no vomiting. I did test for ketones (I used to keep a very strict diet and had to make sure I didn't go too far into ketosis, so I already had sticks at home) and I had mild/moderate? ketones until the 4-5th day on insulin (when my bs finally dropped under the 400's). It was the lightest purple then pink, then none. My Dr told me not to test, but I was curious. Is it always a bad thing to be producing ketones? What should I do if I have them again?

Awesome, thanks again! Books are ordered!

Type1Gal- Thank you for responding! Your post was very comforting, I'm glad it's normal to feel as I do during this stage. My endo said he was expecting me to feel much better by now and it made me a bit worried that in some ways, I feel even worse. I'm glad your kidney function went back to normal, that's reassuring! So is your similar experience with water retention.

My endo says he will switch me to a basal and bolus (though he never used those words, lol), do you recommend any particular brands or methods?

Palominovet- So nice to hear from someone with such a similar experience! And you were diagnosed only a day after me, diabetes twins!

I too was drinking 3+ gallons of water/day, currently down to 1.5/2. During my first dr appt (with the lame dr) I drank 1/2 a gallon just while at the office! I won't miss having to pee every 10-20min, that's for sure.

I'm glad you didn't have to go through feeling super sick/hungover. I'm kind of jealous (not in a mean way) that you got fluids and fast, effective treatment. Are you adjusting your dosage based on carb consumption? If yes, what resources did you find the most helpful?

I just got my first reading under 200 yesterday. What was your bs range on the finger prick tests? How often were you told to test? Have you gone low yet? I'm nervous that I won't notice,

Also- how are you dealing with family and friends? I've told most of the people I'm close to, and want to talk about it some, but am not thrilled with their reactions. They are all good people, but I'm getting peeved. Either they over-react and think I must be soooo depressed/overwhelmed (it blows, but I'm dealing fine), think I'm going die soon, have kidney failure, lose my limbs, etc (like their friend, aunt, former roommate's college bf, bleh), or think that I caused it by gaining weight and that all I need to do is get back in shape and I'll be cured. Trying to give facts doesn't seem to help much.

Hi Super_sally! Thank you, and I did order the books. I'm glad you all have brought up the fact that the basal/bolus regime is superior to the mix. Do you think it's worth wasting the $500 (ouchy ouch ouch!) of novolog mix pens my dr rx'ed to switch to that? Or do you think it would be ok to stay on the mix until I use up my supply?

Good job bringing up thyroid issues, I almost forgot about that. I've had hypothyroidism (not hashimoto's) since I was 10, and do panels pretty often to make sure I'm on the right dosage of levothyroxine. This last test showed my T4 was a bit high, so the endo reduced my script from 175mcg to 150mcg. Hopefully this is what was causing my increased body heat.

Nice to meet you and I am sorry that you joined our merry club. I agree with all the comments here, especially that you should push your team for a basal/bolus insulin regime. I think that would really help.

I would like to add that many of the problems and issues you are still experiencing can be contributed to high BGs. Poor blood lipids, passing protein in your urine, blurry vision and infections should all improve drastically as you BG spends more time in normal range.

Be sure to test a lot as the information you will learn will be invaluable. Have your endo/PCP write an RX for 10+ strips a day (if possible). Another reason to test a lot is you may soon experience false hypos. False hypos occur when your body reacts like you are having hypoglycemia, but your BG is not low. It is common for people with high BGs to experience this as they begin to come back within range. But you will need to test to make sure that you are not actually hypo.

You should also start carrying some supplies with you when you leave the house. Specifically you will need sugar for hypo treatment, meter, and insulin most everytime you leave the house.

Lastly, do not be surprised if you gain some weight back (sorry). Your body was starving without insulin and could not use the carbs you were eating. Now that you are using insulin your body will begin β€œeat” carbs again. This is all normal and healthy for your body