Very High HBA1C!

I went to my endrinologist on Monday and had a terrible visit. According to the lab work that I had done at the beginning of the month, my HBA1C has climbed to 10.4!!!! I was so upset, mine has never been that high. I work out at least 3 times a week and watch everything I eat, so I don't understand what I need to change. My blood sugars are ALWAYS high, which is why my HBA1C is so bad. I was put on Symlin insulin a few months ago to try to help with that issue. I have tried increasing the amount of insulin I take at meals as well, and no matter what I do, my blood sugars are always high!

Also, my endo said that I'm in between Stage 1 and Stage 2 of kidney disease. I have no idea how serious this is, or how common. I also have to go back to get an x-ray done of my heart as my endo heard a "clicking" noise that he's worried about. I was wondering if you any of you have these issues.

I've had diabetes for 10 years and am 24 years old, so I just feel like I'm too young to already start developing these complications. If anyone has any information about what I could do to lower my blood sugars, any info about kidney disease, or the heart x-ray, I would be SO grateful!!!!!!!!!

I have the beginning stages of kidney disease.....my endo had my protein checked in my urine and the number came back high...so she referred me to a nephrologist.....he put me on meds for my blood pressure and ace inhibitors for my kidneys.....I suggest talking to your endo and asking him/her to refer you to a nephrologist. I only go once a year, because things are pretty much under control with my meds.  Do you count carbs?  If you don't know how to do that, you should also see a dietician.  It sounds like may not be covering what you are eating if you are always high afterwards.....Don't know anything about the heart x-ray......sorry!  Keep us informed and good luck!  Let me know if you have any other questions!

And do you have hypertension?

Whew! Sarah, you are going through a lot right now. I was wondering if you didn't have double diabetes (T1, with insulin resistance like T2) but on the down side, you don't want to take metformin when you have potential kidney damage. All I can suggest is don't be afraid to take enough insulin to get your levels down. While you are now a fully cooked adult at age 24, I personally found that things didn't truly settle for me until I was closer to 30. I suspect that there are still hormonal issues possible going on. So don't be surprised if your insulin requirements change around a lot. Does your endo have a cgms that you  could use for a short time to get a handle on things? Maybe that would help.

As for the kidney issues, I can definitely give you a hand there. While the stages don't necessarily mean much, the bottom line is that you are in the very, very beginning stages. Some studies have shown that the early introduction of an ACE inhibitor bp drug can stop the progression of the kidney damage. But you do need to get your blood sugars under control in conjunction with that. The good news too is that typically even if the damage does progress, it is usually very slow (again dependent in part on taking good care of your bp, exercise and a1c). To give you an example, I was first told (I think) that I had protein in my urine when I was about 16. I did end up on dialysis (don't forget that knowledge and drugs weren't as good back then as they are now) but not until I was about 38. I wasn't put on an ACE until they were first available until I was about 22. So there is hope for you. Don't worry too much, but don't take it lightly either. In the meantime, try to cut back on your salt intake if you can. That will help.

Hang in there. You are going to be ok.

Cora

I'm sorry you were given such news - it must be scary for you.  I hope your endo is being proactive with you and giving you the info and support you need.  You are still young and your body may be going through some hormonal adjustments which may trigger some of the high sugars.

You need more insulin to lower your sugars - plain and simple.  It is the easiest thing to do and will work when you get the right amount, so keep increasing it.  Symlin is not insulin.  I notice from your bio you are taking the inhaled insulin - is it possible it is not working properly for you?  How often are you checking your numbers?  If you are high, do you correct immediately? 

Hey Sarah, sorry for your bad news, its sux when you try and don't seem to get anywhere.

Just a thought, I was readign your bio and it stated that you are on inhaled insulin.  I know nothing about the study or inhaled insulin but have you or can you try and go on injectable insulin to see if that would help with you numbers.  Maybe your resistence is a side affect of the inhaled insulin. 

Hang in there

Candice

Sarah, I also just noticed about the inhaled insulin. is it possible that there is a problem with absorption? This can happen with pumping when scar tissue develops and I'm wondering if the same thing can happen in your lungs. Talk to the docs about this.

 

Cora

Thank you everyone so very much for your input and suggestions! I will try anything at this point to improve my blood sugars and health-I just feel so tired ALL the time and my doctor thinks I'm experiencing insulin resisistance. He switched my 24 hr insulin from Lantus to Levimir, which is supposed to perform the same functions as Lantus, but made for people that may have built up a tolerance to it.

My endo didn't say anything about hypertension but like Angela, the results from my urine test came back with very high protein levels. I'll definitely check into seeing a nephrologist. Thanks Cora for the info about kidney damage...it's good to know that if the damage progresses, it should hopefully be at a slow rate.

Since I'm on the clinical study for inhaled insulin, I have to get a PFT (breathing test) and chest x-ray done every 3 months to make sure there's no lung damage, and those results always come back perfect. My endo said that my inhaled insulin seems to be effective and he doesn't think that's the problem. When my blood sugar is high, I inhale immediately and it seems to work pretty quickly in bringing my blood sugars down, but of course it will go right back up later. Which is why my dr thinks it's a problem with my Lantus.  If things keep up, I think I'm just going to give up on the inhaled insulin and go strictly on injectable insulin (I'm already taking 4 shots a day anyway)...Thanks again everyone and if you guys have any other suggestions, please let me know!!

It sounds like you need more long acting insulin.  What is your waking BG?  It shouldn't be more than 40 points different than your bedtime BG with no fast acting insuling working. 

I'm sorry about all your bad news! It sounds like a good idea to up your Levemir (BTW, I've never heard of resistance building up to Lantus -- I've been on it forever, Eek!!!). You're probably overwhelmed at this point, but when you're ready, you may also want to think about: 1) increasing the number of times you test if you aren't on a CGM, 2) waiting longer after taking your short acting insulin to eat if your high after meals (although it sounds like the inhaled starts to act faster, so maybe not as long as the rest of us would wait?), 3) adding in more exercise each day if you aren't already (I started strength training in May and my Lantus needs have decreased slightly with the increased muscle mass), 4) eating fewer crabs with each meal until things settle down (I'm not saying to go low carb forever, just making sure you don't have more than 40-50 grams at once may help when you are getting things under control). I'm sure you know all these things, but it's hard to implement things on a day to day basis. Hang in there!!

My blood sugars have been a roller coaster lately...I can go to bed with my number in the mid-100s, and wake up in the 300s!! Today is the first day I've started to feel a little better since I switched to Levemir on Monday instead of Lantus. I don't understand why my endo said I've built up a tolerance to Lantus either. I know alot of people with diabetes have had it a lot longer than me and have been using Lantus or a certain kind of insulin forever and they still seem to be effective...

My endo wants me to go on a CGM, but I tried it for a week and absolutely hated it. I wore the pump for 5 years and couldn't stand having something attached to me 24/7-I never got used to it. If things keep getting worse, I'm going to have to start using the CGM though so I can get better control. I'm going to try all these other options and suggestions first though!

 

[quote user="Sarah"]My blood sugars have been a roller coaster lately...I can go to bed with my number in the mid-100s, and wake up in the 300s!! [/quote]

Sarah, this is the sign that you need to be taking more Lantus/Levemir.  Maybe increase it by 5-10% each night until your numbers stablize.  Also be mindful of your menstrual cycle - those kinds of highs can happen in the 2-3 days before your period starts.  I end up taking 40% more overnight basal during those days!

Sarah,

I'm so sorry to hear about all this bad news.  From what I've read about your situation, it sounds to me like you're not taking enough long-acting insulin.  If you take a corrective dose of insulin and your blood sugar comes down, but then goes up unexplainably a few hours later, that indicates that there is not enough long-acting insulin in your system.  I'm on the pump, so the equivalent for me would be the basal rate (which I'm sure you knew since you were on the pump for 5 years!), and guess what...when my basal rates are not high enough, my blood sugars get SO out of control, and I feel like there is nothing I can do to get them back to normal.  It sounds like your endo isn't really doing very much to help you with this....do you see a dietitian or certified diabetes educator?  I've found that they're much more hands-on regarding changing insulin rates and things like that. 

As far as the kidney issues, I don't really know much about them.  However, I did read a study recently that found that plant-based proteins are easier on the kidneys than animal proteins.  I just tried finding the study but I couldn't.  If I find it, I'll post it here.  I don't know if that could help you or not, but may be something you can ask your doc about if you're interested.

Good luck,

Molly

I've increased my long-acting insulin and I've finally started feeling better!! My blood sugars seem to be in a much more acceptable range. Still not totally back to normal, but I'm definitely feeling much much better.

I'm glad I have you guys to turn to for help, because my endocrinologist doesn't explain anything or seem to care too much that my HBA1C is climbing higher and higher everytime I see him. I want to switch to an endo that actually cares about his patients and their health.... :(

You really might want to consider a pump too.  Lantus and Levemir just give one flat dose that lasts about 24 hours.  People's natural basal rates vary through the day.  Mine goest anywhere from .3 to 1.7 units an hour --- big difference!

Something else you might be encountering for the first time is Dawn Phenomenon.  It usually starts when people are in their early 20's.  Good luck finding something that works. 

Does your endo have CDE's that work there? We are fortunate that we can email questions in to the office and we get answers withing 24 hours from one of the two nurses. If we had to depend on a doctor I doubt we would get much of any help.

My daughter takes Lantus and we pretty much know the proper dose by what her glucose number is when she awakens. If it is good and within 50 points of bed time then she is okay according to what we have been told. She is never that far off from bedtime though. The only exception was when she ate a bagel for a bed time snack. That thing stayed with her all night and she woke up kind of high. We have raised her Lantus dose by one unit over the past month on our own. She started waking up around 130 to 140 over several days. Now she is 110 to 125.

Some exercise will really help too.

 

Yay!  I'm glad to hear you're starting to feel better!  Honestly, my endo doesn't adjust any of the rates in my pump.  He just looks at my bloodwork and stuff like that.  My dietitian/certified diabetes educator handles all of my pump and insulin issues.  Are you able to see a CDE?  It may really help you get on track with figuring out the right Levimir rates and such.  I'd like to think I'm some kind of pump expert, but my CDE was able to see patterns and make adjustments that I wasn't able to figure out on my own.  :)

Molly

Unfortunately, my endo doesn't have CDE's there that I can work with. He wants to be the decision maker on the health plan of all his patients, and thinks that what he recommends is always right. It frustrates me because what may work for one patient won't work for the other, and there's way too many patients to keep track of and provide the best course of action. I always feel rushed when I'm there for an appointment, and have given up on asking him questions. I'd rather just search the Internet or ask my aunt who's a nurse.

The only reason I still go see him is because he's the only doctor in my local area that approved the clinicial study I'm on for the inhald insulin. If I switch endos, then I can't be on the clinical study anymore....so I'm kinda stuck there!