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.
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! :-)
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 stabilize..it 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.
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?
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!
Super_sally- I spent many years eating a low carb (low/no refined carbs, mostly low GI/GL foods), higher fat/protein diet, just to feel good while keeping my weight down. I'd actually prefer to go back to that, so I'll definitely ask my Dr if there's any reason why I shouldn't. Thank you!
Plus Bernstein has been T1 for zillions of years and is fine, his triglycerides more than perfect. Many doctors still consider him a renegade MD. But he and his patients are walking proof of his ideas.
Snarky Monkey, you sound mature and smart. If you think you could handle it, and you want the best tool for fine tuning your treatment, push your doctor to put you on an insulin pump. I guess your insurance/$ situation would be a factor too, as a pump is costlier to maintain than MDI... But it makes all the difference for me. MDI couldn't track my basal pattern effectively.
Thank you Earthling! I will ask about a pump. I'm not thrilled to spend the $, but it's my health, I'll fork over the dough if it's the best option.
What pump do you recommend? Is there a big difference in quality or effectiveness based on the brand/style?
I've heard choosing a brand of pump is like choosing a car - pretty much a matter of taste and lifestyle. There are probably a lot of discussions in the archives here detailing the virtues and faults of each kind.
When I was looking it all over I liked that Animas used actual T1 diabetic people for its PR and trainers, not gorgeous actors, I also liked that Animas didn't make their insulin cartridges so that only their own in-brand tubing and sets could attach to them like MiniMed does (if you study pumps a little you'll get what I'm talking about). And Animas claims its pumps are waterproof, which I don't know about for sure, as i remove it for showers or swimming. The batteries last me about a month and I like the large bright black with white text screen as my eyes aren't great anymore (had T1 43 yrs.). Recent models have a system where the bg meter communicates with the pump wirelessly, allowing you to take insulin, without digging the pump out of your bra/pocket/wherever - nice in a restaurant.
Others folks will give you glowing reports on their pump brands as well. Omnipods are nice in that they use a remote for everything - no tubing. Might be more expensive, though. I don't know.
If your insurance is great you can also get a constant glucose monitor to go with your pump. It doesn't replace the bg testing, but it will let you know when your bg is trending down or up or if it's stable - helpful in avoiding bad lows as well as fine tuning your pump settings. I don't have this, so I'm left to frequent testing and having to use my own judgement.
Hope this helps.
Thanks Earthling! I'm starting my research on pumps and constant glucose monitors. That sounds like the ideal way to go.