Hello,
ily
I am a 55 year old woman, diagnosed in May 3013. It is quite a shock as there is no family history of diabetes in either side of the family. I had no symptoms until 2 days before things took a turn for the worse. I ended up being admitted to the critical care unit from the emergency room with a blood sugar of 1036 in diabetic ketoacidosis, I have no memory of any of that. I am now on Novolog 8 units with meals, and Lantus 25 units at bedtime. I have highs in the 400's and terrible frequent lows (39-58) with little or no warning until it drops. No blood work has been done since June and my doctor is unconcerned about this, didn't order any tests. I have insomnia so I only manage to sleep 2 hours a night and that is if I am lucky. He did tell me to wake myself up at 2:30 in the morning to test my blood sugar at that time and then call him. I told him I would be glad to wake myself up, if only I were sleeping in the first place. He actually thinks nightmares are causing highs in the morning, despite the fact that I explained three times that I do not sleep more than 2 hours and I do not have nightmares. I don't have any insurance, so I realize "beggars can't be choosers", but I seriously question all of this. I am on an 1800 calorie ADA diet with 60 grams of carbs per meal and a snack. I could never eat all of that food and have never been able to manage to get 1800 calories in a day. I dropped my carbs down to 45 at meals. I just found out about Dr. Bernstein's book and I have ordered it. I am planning on reducing the carbs down to 15grams or lower per meal. I was following weight watchers when this happened. Prior to this I ate mostly green leafy veggies and salads with some fruit and a little meat. I was active, walking 3 miles a day and biking 10 miles at a very fast speed. None of this makes any sense to me. Sorry if I am rambling, but I am confused and disgusted. I just found this site and the information here is great!
Hi Joan. I'm so glad you're here; you are indeed in the right place. I was diagnosed at age 58, 6 years ago, but I was misdiagnosed as Type 2, due solely to my age. I want to tell you most of all that it will get better. Though managing Type 1 Diabetes takes time, effort and knowledge, it does become just a routine part of your life in time.
Even more important than Dr. Bernstein's book I would recommend Using Insulin by John Walsh. Many of us find that our doctors are not that helpful and that we need to learn to manage our own D for the most part. Has your doctor definitely told you that you are Type 1? That is a lot of insulin for a Type 1, though being in DKA certainly leads to that conclusion. You might be having all those lows because you are taking too much insulin. Have you had c-peptide and antibody testing to confirm diagnosis.
Rather than a set dose for meals, many of us use an Insulin to Carb ratio so we can tailor our insulin dose to what we actually eat. We also learn to correct highs and treat lows promptly and as accurately as possible. Using Insulin will help with all that but if you have any specific questions, this is a great place to ask.
There is a lot to learn, but you'll get there! Again, welcome to our little (big!) family!
Zoe
Thank you for the warm welcome Zoe!
The clinic nurse, a diabetic educator thinks I was incorrectly diagnosed as Type 2 based on everything she looked at in my record. She did indicate that the doctor would not be listening to her. One of the nurses in the hospital thought the same thing and did discuss it with one of the hospitalists and was ignored. No tests to confirm anything have been done and probably will not be done. I do not have insurance and now with this diagnosis I will be unable to get insurance that would cover anything "diabetes related" and everything will be "diabetes related". I don't know anything about Insulin to Carb ratio, I will research that. I am still rather confused as to why no blood work was done on the last visit, that just makes no sense to me. Thank you for suggesting John Walsh's book, I will order that as well. I do feel the more information I have the better off I will be. The low blood sugars used to scare the heck out of me, now I am no longer scared and apparently I can function rather well in the 40 to 50 range. Thank you for the information. Joan
nightmares are a sign of hypoglycemia, one of the first signs. were you diagnosed as a type 1 or type 2, did they test you for antibodies, cpeptide levels, etc...8 unis with meals, do you have an I:CR? functioning 'quite well' in the 40 - 50 range is not acceptable, really, especially on insulin. i sleep terribly when my blood sugars are out of control, you'll sleep more soundly once you get into target range. I understand you have no health care, are you eligible for any government programs, especially under the Affordable Health Care Act? You had no symptoms at all, prior to Dx? Do you have excessive weight issues, high blood pressure, cholesterol, these could be more intune with type 2 diabetes. I'm pleased you found this site. There are many folks on here who provide great advice. Hang in there!
One of the important aspects of the Affordable Care Act is that you can't be turned down for insurance due to a preexisting condition. I don't know how it works or when it starts, but I know some aspects of the ACA come into play in October and others in January. Might be worth checking out.
Welcome! Confusion and disgust are certainly understandable at this point. One of the best pieces of advice that I got almost 30 years ago was to learn as much as I could about diabetes. The more you know, pay attention, and put lessons into practice, the easier it will be for you.
There's a lot to learn but you don't have to learn it all at once. When you're starting out like this, it'd be a great idea to start to keep some good personal records about food, insulin, exercise and timing. It's easy for all these factors to start to blur if you don't write it down. You need to learn a lot about your metabolism and writing it down will help you get to know your habits better. You won't have to keep a diary forever but in the beginning, it helps you to learn faster.
A whole bunch of fate was dumped on your plate all at once. Be kind with yourself and don't expect too much too soon. There definitely is a meaningful life after diagnosis! Hang on, you'll get there.
Hi Joan and welcome! I just wanted to say that your story sounds similar to mine–a shocking diagnosis at the age of 58, and completely out of left field. I, too, stumbled upon this site when I was trying to figure out what the heck is this I:C ratio? The book rec that helped me immensely was Think Like a Pancreas. It is available digitally, and you don’t need an ereader because you could download and read it right from your computer. And all the advice is right–it gets better-- and I really speak from experience because I was diagnosed 6 months ago! I know I still have a lot to learn, and I still have bouts of stress and depression-- but I do feel that I am back in control of my disease and not the other way around. Keep asking questions because this group is very knowledgeable and supportive, and keep us posted about your progress because we all care and are traveling the same road. I look forward to hearing about your journey–Dee
If there are any possibilities, i would search for a better endo as soon as things have calmed down a bit so the bloodwork can be done and you are educated properly.
Wishing you luck!!
As Terry says, keeping detailed records is critical to good control.
if you have an iPhone or an Android smartphone there are many good, free apps to handle record keeping and make it way easier.
Two apps I'd recommend are On Track (records) and Fitness Pal (nutrition info and management). These two tools make managing this condition much easier.
Hi Joan so glad you posted here. I was diagnosed as type 1 in 2010 at the age of 60. Diabetes has changed me. They sent me home with Lantus and Novolog and a handy carb counting guide and a formula to apply. After 3 years I'm still bad at judging portion size. Some of the best advice I've taken came from TuDiabetes. Carb control really helped me last winter when the honeymoon was over. I log every day and try to take the long term Levemir (I switched) at the same time every day.
Diet is key for me. To Read and read and listen to the experiences of others has helped a lot.
Hello Joan,
I'm so sorry about your D experience/diagnosis. I went through a similar thing about 1.5 years ago. I think you are on the right track here, going to low carb again. I also think you need a new doctor based on what you said here. He should have been doing blood work frequently after your hospitalization until you stabilized and then at least 2-3x per year after. Mine does it 4x per year, but he only does urine testing once per year and I would like more of that but I have a good a1c so it's probably ok. So hopefully you can get insurance soon or find a better doc. But if you follow Dr. B's ideas and adjust them to your specific needs I think you can get yourself in much better control and feeling much better soon without all those crazy swings.
Nightmares causing highs sounds odd to me- I know stress can affect our bg but I think it is probably the other way round your bg, whatever it is, is causing the nightmares maybe.
I went lo carb pretty quickly after getting out of the hospital when I saw I couldn't stabilize my bg at all any other way. I eat 50g per day now, no grains, plenty of fresh raw veggies and a higher fat content. My lipid panel is great. 60g of carbs per meal is terrible for most people with D, especially if you're eating grains, potatoes etc. If they were all from leafy non starchy veggies it might be ok for some.
Also carb counting is a good way to dose your fast acting for many people… you figure out what your insulin to carb ratio is: i.e. 1:10( 1 unit of insulin to 10 grams of carbs) and so on and try to dose that way instead of a set dose all the time.
As for the low blood sugar, I think you need to be very careful in the 40-50 range because you can start having seizures and passing out if you go much lower than that. I eat protein snacks like nuts and pieces of candy through out the day when I'm active and I know and at a point where I'm likely to drop too low.
I'm not sure what type you may be etc. from what you said but your profile says type 1 so I'm just assuming that. But if you were misdiagnosed, make sure you get the c peptide testing and antibody testing to show what is going on there. With a type 1 diagnosis first you will get the correct treatment and you will get better access to supplies etc. in many cases. Most type 2 will not go into dka unless they have a serious infection or they are ketone prone etc. It is much rarer, statistics I found said 25% of yearly dka cases are type2 the rest are type 1. So your docs should know this.. just part of a lot diabetes ignorance that we all have to deal with from medical professionals unfortunately regarding both types. When I was in the icu there was one other man there who had type 2 who was in kidney failure and in dka. Someone else I spoke with who has type 2 said he was unaware of his D until he went into a coma at very high bg but no dka. Type 2 tend to go into hyper osmolar more than dka.
I'm glad you found tu diabetes, welcome :)
DKA is extremely rare in true Type 2s. Highly more likely, it is misdiagnosed Type 1 in DKA. Which sadly to this day most adult-onset Type 1s are misdiagnosed.
Hi Joan: You have been given some great advice by Zoe and others. Here is a blog that I wrote for newly diagnosedadult onset Type 1s, which your situation (DKA, then immediately put on exogenous insulin) makes me think may be the case for you. Going lower carb is really the smart way to go, IMO. Best of luck, I am glad that you found TuDiabetes, you can get great support here from people who really understand.
I am glad you found us and blessings on you for your efforts to care for yourself---The D is all about self-management, as difficult as that can be at times. Dr B can be off-putting at first, but the positive results usually happen fast and encourage one to persevere. I am wishing you well on your journey thru the confusing bramble of this scourge. You can do it!!!.....Blessings...Elizabeth
I agree it is not usually found at diagnosis as opposed to later on. Statistics I found said that out of yearly dka cases treated in hospitals(around 100,000 per year in the US) 25% were type 2. Since there are many more people with type 2 than type 1 I would guess as you say it is a low number and as you say some could be misdiagnosed type 1s. I really could not find very much about this online. But there are cases of dka in true type 2. My fellow patient was one- he had been type 2 for many years- it wasn't a misdiagnosis. He was in kidney failure and he had some type of infection as well which caused it I assume.
Hello Elizabeth,
I have changed pretty much everything I was instructed to do by the hospital and my doctor. I am now following a low carbohydrate diet, around 30-45 grams per day. The hospital had me on a 180 gram carb diet. Doing "my own thing" has decreased my blood sugars dramatically and I have decreased both the Novolog and Lantus dosages. I am having fewer low blood sugar readings as well. Dr. B's book has given me lots of things to think about. I know the meter averages aren't as good as a HgA1C test, but my 30 day average has gone down from 247 to 146 and that makes me very happy.
Thank you for replying and the encouragement!
Joan
Wow, Joan, that's a great improvement! And I disagree about the meter averages. I think our day to day results give us more of a picture of what's going on than the A1C!
Hi Melitta,
Thank you for the link to your blog. Great information!
joan, that is excellent news! i have also found the traditional recommendations dont work for me. i follow a lowish carb diet and am doing much better than i thonk i would have had i followed doctors orders.
Hi Joan -
That is extraordinary progress and you deserve to be very happy. Just as important, nothing succeeds like success with diabetes. It is easier to dose and correct when your blood sugar is more stable. May you continue to grow confident in your self-management continue to see further success.
Maurie