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.
Hey Snarky- Same thing happened to me this summer. I'm 35. I was tired and didn't feel like myself. Went to the doctor she said omg should I call an ambulance right now? I was like what ? No I'll drive myself- then I laid in the hospital for a week.
Got home still tired couldn't get the energy to do anything. I was scared to eat and thought that I'd never feel 100% again. After 2 months of insulin. cut back my carbs, watched my blood sugar, and just took it easy I started feeling better. I'm now 7 months into this thing and it sucks, but I feel so much better.
You'll have to get used to the lows in the beginning I had a ton of them just like you mentioned. I mowed the grass and almost passed out. I found that if I have to do a bunch of chores say in the morning that I just take less insulin with breakfast- work an hour and test the blood sugar again. I'm still in doubt when it comes to exercise and work vs just sitting at my desk all day.
It's the month or 2 leading up to the diagnoses that was the worst. You'll get your energy back. Takes a month at least. Don't do too much research yet. I was having anxiety attacks with all the info and amputees and all the horror stories out there. Just eat healthy and take the insulin. It takes a few months to accept the fact- I'm still getting used to it. It's super easy to get overly obsessed. Everything will start feeling normal again. Just don't stress, it makes it worse.
Hi Zip, thanks for posting! I'm sorry you've had to go though all this too, but it's nice to have people to commiserate with. Why did you need to stay in the hospital for a week? What did it do for you?
I don't think I've experienced a true low yet, but I can really feel when I have a big drop. I'm slowly increasing my activity again, but resting when it feels awful. It looks like finding a good balance of insulin, diet, and activity will be a trial and error experience.
I'm pretty type A, so lots of research is actually comforting to me! But I'm definitely staying, calm, taking it easy, and trying to take the best care of myself as possible.
It sounds like zip had DKA, right zip? It's something worth avoiding (!!!) which is why I recommended formulating a "sick day" plan now, before you need it. It's easy to let the Big D get away from us when we have the flu or a bad stomach virus. Gotta stay on top of it. Just programming a few emergency numbers into your phone is a start: endo's nurse, 24-hour nurse line for your hospital or HMO, number for a T1 buddy who will help you think things through when your head feels muzzy from sickness. Sometimes we need someone to tell us to stop messing around and get ourselves to the hospital -- or to drive us there and hold our hands -- e.g. when our glucose keeps running too high, we can't keep down fluids, we have a fever, there are ketones in our urine and we need help. Now.
Getting the Ketostix and some kind of replacement for electrolytes is important, too. Nuun, ElectroMix and a home-made electrolyte replacement are all sugar-free options. Even though we do need to consume SOME carbs when we're sick, I like to keep a sugar-free option on hand for those times when my gut is not cooperating with me but I can still eat small amounts of real food.
You can Google up a home-made formula:
2 quarts water
2 tablespoons sugar (I leave this out unless I really need it.)
1 teaspoon baking soda
1/2 teaspoon salt substitute (made with potassium chloride, I use NuSalt)
1/2 teaspoon salt
2 teaspoons vanilla (or other) extract for flavor
Preparation: Mix all ingredients together and refrigerate. Use the mix within 4 days. This can also be frozen into popsicles.
It's important to discuss all this with your doctor, however, because you might have special needs, e.g. medications you shouldn't take when you're unable to keep down fluids, sensitivity to potassium supplements due to kidney issues, etc. that are unique to your body/condition.
I agree you for sure need a different regimen, like a Basal/Bolus or in time look into a insluin pump... but you do need to check ur self more than 3 times a day, my daughter has been T1D for 17 months now, and is still checked 6-8 times a day!! and in the middle of the night!! Im sure all your #s will slowly come down, its very stressful in the begining but I promise you it will settle down and all this carb counting and glucose testing will become 2nd nature to you!! your not alone just know that!! Good Luck and ask ur Endo about a different regimen!!!
Thank you Nattysmom!
Your story sounds very much like mine - being passed around from doctor to doctor without any progress until one magical day when they finally ran the A1C! I was diagnosed at 32 and felt it was very overwhelming, so I completely understand that you have many questions!
It took me around 4 months to get my levels down to "normal human" levels. While you're adjusting, you will feel very out of sorts because your body is not used to having "normal human" levels. It feels very frightening - a normal level will feel like a hypo to you. It will gradually even out, I promise :)
I agree with Zoe - your medication sounds very outdated, like something from the 1980s?! I would recommend you get another endo - and what was with this "last" appointment with him?! I go every 3 months to my endo.
The other thing I would recommend is to change your diet. No matter how perfect you are with your medications, it will be worthless if the food works against you. I have one kidney which I lost over time, so I'm trying to be super careful with my nutrition. I highly recommend celery (so boring, I know) but it's magical for the kidneys. I often have pain and find that it clears right up with 6-7 stalks of celery. Better sometimes is veggie juice, but juicers are expensive so the whole veggie is just as good. Try to eat as many veggies as you can, it sounds like you have a lot of healing to do and there are no foods besides veggies that have such high concentrations of vitamins and minerals. If you are hungry, then eat but make sure that everything you consume is beneficial. And most importantly, take care of yourself. It's not a sign of weakness to acknowledge when you're not feeling well - it's a sign of strength and will help you out in the future :) Best of luck to you for the future! If you have any questions, this group is really awesome!
Hi Jodi, thanks for responding!
It's so nice to hear from people with similar experiences. My blood sugar range has been much better lately, and so have my symptoms, thank goodness.
I'm thinking about seeing another endo. Working with mine is a bit frustrating. I'm seeing him every 1-3 weeks, I meant my latest appointment, not that it would be my final appointment. How does one go about finding an endo the suits their needs?
My diet has been changing. I normally eat loads of veggies, but I've actually had to cut back recently due to stomach problems. I'm aiming for maximum nutrition, over-all, with moderate carbs and minimal empty calories. It's a struggle still, I'd gotten used to overeating before my diagnosis. Any advice on controlling appetite? I drink a ton of water, eat lots of fiber, have a good balane of protein/fat in meals, but the hunger is difficult to deal with.
I am sure eveyone has answered your questions by now. I just want to say it gets better, once you get a hang of everything. Its alot and it will get frustrating but in all it will become easier. The good thing is you found us at the beginning of your diagnoses, I was five years into it before I found this site. It helps alot to speak to someone else in your situation. My name is Rye and if you need anything let me know...
I'm sorry you are diagnosed with T1. Mine was just in January and i ended up in ICU for 3 days because my Internist delayed and thought I was T2. On admission, my BS was 423 and A1C was 6.2. I had keytoacidosis or DKA because I did not know of the condition and did not manage it. I lost 15lbs in 1 week. My body was starving and burned fat. But that process release toxins in my blood and the constant bathroom runs flush out electrolytes which I would have died if I was not treated in the ICU. I found a great endo after I was released. She had me try the Dexcom monitor for 1 week to help us see the pattern of my sugar level and to help me manage insulin dosage. Without it, you would have to test before meal and 2 hrs after meal. It also help alert when the sugar is over or under certain threshold. Unfortunately, for woman, our monthly cycles, stress, and cold/flu affect the BS even if you eat the exact same thing in the exact amount.
I don't like the sound of your Endo. Mine sent me to an opthalmalogist to check on any damage to my eyes. You might want to find your local support group and ask for references.
You've found a great forum for support. Hang tough. It's hard to adjust but you have family and friends to support you. You'll be fine. My endo said it's an "inconvenient but managable disease". And you have to manage it or kidney failure, blindness, amputation to name a few on top of huge hospital bill.