Hello! Bear with me, as this will be a long post and I'm new here and don't know all the lingo. :)
My husband, Kris, was diagnosed as type 2 when he was 19--he is now type 1 and has been on insulin for about 6 years. He is 32 years old. About 3 1/2 years ago he was in the hospital with DKA, recovered and regained control. However, about 6 months later he developed diabetic retinopathy which (in addition to a congenital eye problem he has) caused him to be unable to continue his job. We attempted several things to treat the condition with no success. He remained out of work and trying to file for disability.
About 9 months ago, after starting a fish oil supplement, he woke up from a nap and his vision was corrected. It isn't 100% back to what it used to be (again, it was never great to begin with) but he is able to do normal things like read, make out faces, etc. Throughout all of this, I believe his blood sugar has been at least decently controlled. He mainly did his thing, I didn't pay a whole lot of attention because there seemed to be few problems. In October of 2011 he got a part time job. Recently, they upped his hours to about 35 a week. After being off of work for so long, his readings are all over the place. For example, one day (not a work day) 2 hrs. after lunch he was 149, then about an hour later he plummeted to 49. The past few weeks we have been working hard to get him straitened out, but today before I got home from work he passed out, somehow made it to the kitchen on his own to get something to eat, and is now exhausted. His last reading (about 3 hrs after the incident) was 249 and now we are dealing with that. **SIGH** They told him at work that his hours are being cut again until he can get his diabetes under control, but I am afraid that if this continues he will lose his job.
To complicate things enormously...we are uninsured. His medication comes from a low-income program, but anything more than test strips are mainly out of our reach. We make juuust too much to meet the income requirements for our local free clinic.
Needless to say, I'm a nervous wreck. I fear leaving him alone and am at my wits end as to what to do, so I am turning to this forum for some advice, or at least an idea of where to start! Here is his current regimen: He takes 1 unit of Novolog for every 15 g of carbs he consumes at mealtime and snacks. He takes a daily dose around 11 am of 16 units of Lantus, he takes a few unit less on the days that he works.
Ideas? Suggestions? Friendly encouragement? I need it! :)
Thank you in advance! --Veronica
First off, thanks for the hugs. Need 'em! :)
Secondly, I know that some of his eye issues are related to diabetes, but not all of them. He was born with a condition called ocular albinism (basically a lack of pigment in his eye) and so has had very reduced vision his whole life. He has never been able to drive, being out in the sun is difficult, he is only been able to read things a few inches from his eyes. However, I am certainly not in denial that his diabetes has contributed to his more recent eye issues. Why they partially resolved is beyond everyone--but we hypothesize it has something to do with his fish oil supplements, so he always takes those!
We have recently started a system for writing down A.M. and P.M. readings, everything he eats, the amount of carbs he calculated, the amount of insulin he took, and his BG readings before and 2 hours after the meal. But I hadn't thought of writing down activity! He's not a super active guy, but he's an awesome husband who does the cooking, cleaning, laundry, etc. which can certainly be counted as some sort of exercise. So we do need to keep track of that. We are planning on buying an A1C testing kit to see where we are right now with that.
And I swear I'm not a super overbearing wife who is making him change while he rolls his eyes at me. He wants to change but I know that he needs help doing it. He just really doesn't care for internet research and I happen to love it! So this is my way of helping him. I'm running all the advice I'm getting here by him and his responses go into mine, so in a way it is him asking these questions as well.
Again, thank you so much for your help and advice!
Welcome Veronica. Zoe and BSC have great knowledge and insight and have been a great help to me. I agree that it would be ideal for your husband to join TuD as well. There is so much to learn about D and the majority of what I have learned has come by way of this community. And, like you, my wife is the one who lead me here. I also have retinopathy. The retinologist was not very optimistic when he first saw me. I have spent a lot of time and money to save my eye sight, but controlling my BG as close to normal as I can gets more credit from my Dr than he gives himself. I also use Lantus and Apidra on MDI. It does take trial and error. The key is to ALWAYS be prepared to treat a low and to test often. I know that this is a challenge for you, but it really is key to BG management. I think I speak for most T1's when I say that I do not drive unless I have recently tested. Like many others here I have found that the fewer carbs I eat, the less insulin I use and the more stable my readings are. It has taken a while to settle on a diet and foods that work well and are satisfying, but I can now be pretty confident about my BG on a normal day. But, I still test 6 to 10 times per day. Another resource that really helped me understand my BG and how to track it is Blood Sugar 101.com. There is also a supplement called Alpha Lipoic Acid that is a standard issue for diabetes in other countries. I started taking it for my neuropathy, but it is also good for retinopathy and helps to control BG. Take some time to research these things along the way and make the best choices for you and your husband.
Sorry for the ramble. Had a bunch of stop and go too get this written. Please do encourage your husband to join us. It is one of the best of the many things my wife has done for me in my D care.
Randy--Thanks for replying! Good (or not good?) to meet someone else with retinopathy problems. When we were seeing the eye specialist a few years ago there weren't many others. (Well, at least no one anywhere near our age.) I know that it is critical for him to maintain proper levels to prevent any issues from reoccurring. We are learning more and more to always be prepared for a low and to TEST, TEST, TEST! I know the diet is going to be the hardest thing to really get under control as we are both food loving people. I really like baking bread, but I have had to cut back on that so there isn't a temptation for him. We'll get there.
I have to say I am very interested in the website and supplement that you mentioned. When I have some time I will really look into it. And I will continue to encourage him to join the community. Thank you!
Finding others with similar issues and situations has been a real help for me too. The first couple months here I mostly spent just exploring and reading the discussions. I learned a tremendous amount of very helpful information and found out about things I had never heard of or considered. Blood Sugar 101 was one of the most helpful things I found in the first few weeks after my DX.
I've also had my share of lows. I only passed out on the first one. My wife found me in my chair, out cold. She did not know what to do, but I woke up with her trying to feed me. My BG was 34, but that was after she managed to get something in my stomach. That was the only "out cold" low I've had and I don't want another. I'm sure your husband never wants to put you through that again either, much less himself. Over the course of the next few months I had more, less severe, lows. I found that most of these were happening after work and before dinner. I was going just a little too long without eating. I had to adjust my eating schedule and make sure I was good to go before I tried to run errands on the way home. I make sure my BG is good before I drive home and have a snack shortly after I get home (usually popcorn and some cheese). These small precautions and changes have made all the difference in the quality of my evenings.
I eat fairly low carb. About 100 per day. Most meals are very low to no carb. I use most of my carbs with a morning snack at work and my after work snack. I try never to take insulin after about 6:00 and take my full Lantus dose with breakfast. I still have a low from time to time, but normally I catch them in the 60 to 70 range which makes them less dreadful and easier to treat. If I do have a bad low it is because of a miscalculation on my part. I can also feel them coming most of the time and a quick test tells me what to do. Some of my earlier lows were because I did not know what that feeling was.
Well, enough of my ramble here. Hope some of this helps. Remember we are all different, so learn all you can and find what works best for you.
Hugs, Vodkalyn. Husbands get so depressed over having these kinds of problems. I want to add to Zoe and BSC, and say that I would do a basal test over a three day period, learning what blood sugar is happening throughout the day/evening and one at night.
The basal test means first day, he skips breakfast and tests early and mid morning. Actually it would be great to have tests every hour, but I'm trying to reduce costs. Second day he skips lunch and does tests lunchtime and two hours later. Third day he skips supper and does tests 5 pm, 7 and 9. Again during night. These tests should show you how the lantus being given at 11 am is holding his blood sugar. That lantus is only for the body's cells' needs. Not to cover food. If it's going all over the place, then consider dividing the lantus. And if it's going below 80, the total dose needs a reduction.
Often in the US, doctors start patients on units= to 1/2 of 1/4 of their body weight for the lantus dose. The other half of the 1/4 body weight in units. If, for example, Kris weighed in at 128, his doctor would figure 1/4 of 128 = 32. So he would think 32 units= total daily insulin. Only 1/2 of that would be apportioned to lantus, so 16 units would be prescribed. The other 1/2 of that would be apportioned to meals, like 3u breakfast, 5u lunch, 2 units for a midday snack, and 7u supper. And the carb grams would be apportioned likewise and it comes out to 1:15. But after insulin has been used, the cells don't need as much, and needs go down.
The only way you can grab this by the tail is to start with the basal dose, the lantus, and see what's happening.
That Lantus dose should not have to be changed once you have figures round the clock that are riding 90-120. Without food changing the blood glucose, the Lantus should keep the blood glucose even round the clock. If you are getting high tests 6 am to 11 am, either the Lantus is not active for 24 hours or Kris has Dawn Phenomenon.
Giving Lantus at 11 am confounds the issue. Many folks split to provide Lantus at 9-10 pm, less than half the dose for night. They then give their daily larger dose in the morning on awakening. It is not hard to envision lowering the 16 units to 12 for 6-7 am and 2u at 9 pm. Sometimes it is easier to up the basal insulin (Lantus) rather than lower it.
After his Lantus is providing him evenness, then it is time to test how low 1 unit of Novolog takes him. He needs to be at about 180 mg/dL, and take 1 unit. In 2.5 hours, test again and record it. Knowing exactly what a unit reduces blood glucose is then used for correction.
Finally, using small numbers of grams of certain foods, he can test exactly what he needs to give of Novolog to keep his blood glucose below 140 for those foods. He can learn which foods spike him. When I say small numbers, I like using 5-7 grams of a type of food for this. Repeat eating, that is eating the same food again, and tweaking the dose will allow him to reduce his carbs and incorporate protein so he's not hungry while doing this. And he will find out what size portion goes best with what units of Novolog. Trial and error as Zoe said. And I hope you know how much we're all cheering you and he on.
Thank you VERY much for explaining this all in plain English! I was trying to figure out exactly how to do the basal testing and every place I tried was making it seem much more complicated than it is. You really broke it down and made it seem so simple. We'll be doing this testing sometime soon...as soon as his numbers are settled and he has his strength back. Also, it's nice to know that we might not want to split the Lantus 50/50, it might be better to weigh heavier on the morning dose. Good to know.
I never thought about testing with small amounts of specific foods. We do have foods that we each a lot more than others so that could be great to know just what those are doing to his sugar. Thanks!
It sounds like you are getting some great advice from some of the veterans here, so I just wanted to send you hugs. Your husband is lucky to have someone that is trying so hard to understand his disease. I wish you the best!
I am getting TONS of good advice from everyone here and we hope to make progress in understanding what is going on. Thank you for your good wishes!