Trouble helping my husband manage his diabetes

Type 1 and LADA
1

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

2

First of all, welcome to TuD, Veronica. You've definitely come to the right place. You are not alone, as many spouses, parents, etc come on here looking for support and information for their loved one. I'm very glad you're hear, but I would also strongly encourage your husband to join and participate, because he too is in need of knowledge and support!

What you are going through sounds complex and frustrating, so my first question would be what kind of support he has? Does he have a good endo or cde that sits down with him and looks at his numbers and makes recommendations? Medical professionals definitely vary in their knowledge of Type 1, and many are less than helpful and even give out outdated info. I know you are limited in resources so I strongly urge him to read "Using Insulin" by John Walsh, keep good records, and learn how to tweak his own numbers to match his needs and the results. It's all about trial and error.

Some specifics. 1:15 is a good starting place to determine I:C ratio, but many doctors look upon it as a universal number. It is not. We are all different in our insulin needs, and many of us find we need different ratios for different meals. My own, for example are 1:5, 1:10 and 1:21. Is the 1:15 working to keep him in target range 2 hours after eating? If he is consistently high (or low) then you should start tweaking that ratio one number at a time until you get good results at least more of the time than not. How about the Lantus? Does it hold him steady in between meals, fasting and bedtime? Ideally he should even be able to skip meals and stay steady. It's harder to do on MDI than on the pump, but if he is experiencing a lot of lows or highs in those in between times, he might consider changing that dose (1 unit at a time than see how it works for a couple days). Another option is to split the dose in two which many people find works better. A third option is to try Levemir which for many people is smoother.

Finally, reading your post over, a couple questions. Did he correct that 149 (take more insulin)? Is that how he went down to 49 or did it just happen?Did he exercise? My computations are that if he ate at 12 and went low at 3, that would be exactly when his Lantus peaks. It might be too high a dose, or he might need to take it at a different time. When he passsed out I'm assuming it was from a low. What did he treat it with? I recommend using glucose tablets, and determining how many he needs to drop how many points. Too many people eat "goodies" and then overdo them and go high and that roller coaster isn't good. He also needs to learn his ISF to know how much one unit of insulin drops his blood sugar so he can correct for highs. He also needs to carry glucose tabs with him and test at work so he can quickly respond to a low and not risk his job. But bottom line is he needs to see if his numbers can get more stable.

Hang in there, Veronica, it's a lot of work but hopefully he can get a handle on things. As Type 1's unexpected highs and lows can be a part of the game, and what we need to know is the best way to respond to them (treating the lows with the right amount and correcting the highs accurately.) But it shouldn't be as hard as it seems for your husband! Take care of yourselves. If there is any way at all he can get into a support group with other Type 1's that would help tremendously.

3

Welcome. I really have to applaud you for coming here. I wish my wife took such an active interest in my condition. I guess I would tell you that there are lots of things you can do to better manage diabetes. I think many of us were diagnosed with diabetes, learned a few things from our doctors and educators and then spent a long time living in isolation. And the thing about diabetes is that you can't just take a pill and fix it, it is a constant 24/7 vigil. But as Zoe suggests, there is lots of stuff to learn about diabetes to help us control our condition. There are good books like she said. You can make some changes to your diet, lowering carbs and reducing insulin leading to less blood sugar swings. And when you have problems you can come here and talk with other people who have diabetes and solve those problems.

We don't have to deal with our diabetes alone anymore.

4

Thanks for the reply! I will certainly encourage my husband to join as well.

As for our support system, there isn't much of one as far as a medical support system goes. His mother is a nurse, which can be helpful. His step-father is a GP doctor which can get us some free exams and connections to programs, but he isn't the most compassionate guy. Mostly he acts inconvenienced when we ask for help. So not much of a support I guess. And I have no doubt that the information he has supplied us is outdated. (Can you tell he's not my favorite person?) I searched the book you suggested at our local library, and they don't have it, but I'm sure we can get it cheaply online somewhere.

I mentioned to my husband about the 1:15 ratio being able to be tweaked and he was interested. He feels that in the past it has worked to keep him in the correct range, but now things seem to be different. He says his lows are usually in the evening and during the night. Do you think splitting the Lantus dose might help that? He said that in the past (when he was insured) he was on Levemir, but that it isn't covered by the program that he now it able to get insulin through, hence being on Lantus.

In the specific incident I mentioned, he did not take any insulin to correct his reading of 149. The drop seemed to happen on its own. He was cooking at the time, and while he does make some pretty elaborate, amazing recipes, I wouldn't consider it true exercise. Like you said, maybe if the Lantus was at its peak dose at that time and he was up and moving around, it was just enough to lower his BG. Today when he passed out he treated with whatever he could get to which happened to be marshmallows, peanuts, and cheerios. He doesn't usually overindulge with crazy sweets or anything like that when he's low, but he doesn't use glucose tablets. I suggested this to him and he begrudgingly agreed that is probably what he should do instead.

I also looked into the store-bought A1C test kits which seem to be in our price range. I think this will give us a better idea of where we are and help us to track our progress.

5

Thank you, bsc. I didn't always take such an active role in his diabetes, but I am now and I guess that counts for something, right? And to be fair, he hasn't always done a great job of taking care of himself either, so someone has to make sure it's getting done right! It feels nice to have a support group that seems so open and caring. You can talk to family members about the problems, but the reality is that they aren't dealing with it day and and day out, there for the highs and the lows, so they can't fully understand. It's nice to come to a place with people who get it!

6

Hi Veronica --

Kudos for taking the first step. Hopefully with some stuff learned here, you and your husband can begin to get his swings corrected.

Like your husband, I am taking Lantus and Novolog via MDI, just as I always have done. For my basal, I take 26u of L in the AM, and then bolus at each meal with a sliding scale of N, based on the carbs I'm going to ingest, at the same 1:15 ratio your husband uses. I've been on the same sort of numbers for, oh, 30 years now, so have a fair bit of experience with it all, but that doesn't mean it will be the same for your husband. The 149 to 49 swing you mentioned that he got post-lunch sounds an awful lot like he miscalculated the amount of carbs he took in. Yes, it's also possible that because he's doing the Lantus mid-day, that that could factor in, though it never feels to me like Lantus 'peaks' per se, but that could just be me (remember -- this malady tends to affect all of us a wee bit differently...). I'm not sure. Just at first blush it sounds fishy -- just not enough carb intake for the insulin shot is what it sounds like. Happens to me all the time. Or, there could be other factors at play here -- stress, adrenaline, fear -- you name it. ALL of this stuff can affect us differently, day in, day out. You see it here all the time -- someone says, "I took EXACTLY the same amount of insulin and ate EXACTLY the same food, but my sugars were perfect on one day, and just wacky the next! WHY?!?!?!" Yeah, no good answer. That's life. Learn to live with it, and know that it's not 'your fault.'

For me, neither 149 nor 49 is a big deal. Again, that's just me: I've been at this for over 30 years now and have no complications. I hit numbers way above 149 regularly (mostly because of intense athletics that tend too make me plummet and shoot high...). And while 49 is definitely getting into the dungeon, I am quite used to it down around there. I still have a fair bit of hypo-sensitivity, so I definitely feel it when I hit 49. It's uncomfortable, but it sounds like it is right dangerous for your husband. I get all wigged out when I hit the low 30s or upper 20s. I try to stay away from there as much as possible, but when I get down there, I am really in trouble. So, your husband might be feeling that same stuff at 49. Not good. Perhaps he feels it when he begins to drop? If so, he may want to take in some carbs if he gets under 90 or so, and has that dropping feeling (so that he never reaches that 49 place).

In any case, good luck to you and to him. I hope you can get it sorted.

/\/\

7

Ok, first off how fabulous are you looking into all this. HUGS.

Secondly, I was in your husbands shoes. Up down, eat, don't eat, sick, not sick. Now first off the eye issue IS a problem related to diabetes. He needs to get under control NOW because the problems are only going to get worse the longer he is out of control.

So, here's what to do. Keep a log book/journal of the following
Time - Insulin - Food - Activities
Each time something goes into his body he writes it down. Food, insulin, pills for a head ache - Everything.
Everything he does gets written down.
He needs to test (there is a fabulous guy that has posted his ritual of testing but I'll recreate it for you). Here is what I do daily
6:30 Wake up - test
7:00 Eat breakfast
7:40 Walk to work
8:00Test once I arrive
9:00 or 10:00 Test
11:30 Test
12:00 lunch test
1:00 Test
2:30 test
4:00 Finishing up the day TEST
6:00 dinner Test
8:00 test
10:30 Bed time Test
Honest to god's Truth - Yesterday alone I tested 10 times.

Now the reason I'm suggesting the journal is because you will see patterns. If they are written down you can see them. It's too hard to remember what happened a week ago. At the moment your husband is trying to correct in the moment - not realising that there might be something causing his problems.

Keep a journal of food it's so helpful. I realized that my watermelon snacks were way too big and adjusted. I realized that pasta dinners consistenly made me high in the mornings so I adjust my insulin now for those.

I did this every day for 6 months and got my A1C down to 6.5 and learned so much.
As for his lows - I still over eat on those and I've had diabetes for 28 years.

One last thing to you specifically. This is hard for me to phrase correctly but I feel like you need to hear it as well. Everyone in my life tried to get me to change. I wouldn't listen. It took ME WANTING to change for it to finally happen. Everyone tried. Everyone. But YOU cannot change someone - only they can. If it was your husband asking these questions I would know that he would be ok - you can love him endlessly but it's up to him. He has to decide if he wants to live or not. It literally is that serious. He has to decide if getting his sugars under control is worth it. BTW out of control sugars can also cause erectile dysfunction. Tell him that...his penis won't work if he doesn't take control - guys seem to get themselves together when you mention that!

Good luck and let us know how it goes.

8

It sounds like your husband is open to learning some new approaches, and you will definitely get suggestions here. If he is regularly high from the 1:15, you might want to try just backing it up to 1:14 and see how that works for awhile, then 1:13 etc, keeping in mind that your trial and error might lead to different results for the 3 meals.

Splitting the dose might help the lows, because there will be less at any given time. Also if there are frequent lows, he might have to cut the dose by a unit. But for lows in evening and night also consider the bolus from dinner. It's best not to go to bed with any active insulin; since the insulin lasts approximately 4 hours, if you go to bed at 11 you wouldn't want to bolus and eat after 7. Also the 1:15 ratio might be too much for dinner, when we tend to not need as much.

Nobody really likes glucose tablets, but they are the most rapid acting, the most easily measured and totally unlikely to overdo!

I always use the home A1C kits. You get two tests per kit (and they do go on sale sometimes), so you can take one and then another in 3 months to compare.

9

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.

10

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.

11

It's great to hear that someone uses a very similar regimen! And I agree, I am suspicious that there wasn't enough carb intake for that certain situation. We need to figure out exactly what his insulin to card ratio is and maybe help to correct that. And I'm sure he has been feeling a lot of stress lately (as have I) so I do not doubt that could have an impact.

He was doing really well with not dipping down as low as 49 for a while so I think maybe he forgot what the feeling was like? Maybe not, that's just speculation on my part. But we'd love to keep it out of that range in the future! Thanks for your advice!

12

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!

13

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!

15

Hi Emmy --

Two things....

1. If he's passed out, best to have injectible glucagon around, whcih can be had in the form of Novo's GlucaGen HypoKit. I think there may be similar prods out there as well. Good to get one for those drastic emergencies (I have to get another one now that I think on it -- my current one is way past prime...).

2. You say "Never give him anything by mouth if he does pass out though" and I always understood that if you found an unconscious person whom you know to be diabetic, then put sugar into his mouth. It will be secreted into his system through the tongue without engaging the throat, which of course could lead to all sorts of choking probs, etc. The idea being that if the person is passed out and you don't know if it is due to hypo- or hyper- glycemia, that the amount of sugar necessary to pull them out of the hypo- would be almost insignificant if they had passed out due to severe highs. THoughts?

/\/\

17

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.

18

We're considering splitting his dose and will talk to his doctor about it soon. I guess I didn't realize that the insulin is active for a full 4 hours, we will have to consider going to bed a little later to make sure he isn't getting too low before bed. We're already making some progress through little changes and very careful monitoring; at all of his checks today there wasn't one higher than 157 or lower than 100! He is taking this very seriously (as he should) and is committed to making the changes. And we are certainly going to go out on Friday (payday!) and get an A1C kit to see where we are at. Thanks so much for your throughtful advice!

19

If you're staying in the 100 to 160 range, then you're well on your way to success. Take it one day at a time and celebrate your successes!

20

I am planning on buying some glucose tablets to keep around the house as soon as I can. In the mean time I got a great deal on Enterex diabetic shakes...has anyone tried them? My friend who is a nurse at a nursing home said they use them frequently to treat lows with her patients. Anyhow, Kris has had two of them already, one as breakfast and one blended with peanut butter and unsweetened cocoa powder as a snack when he was getting a little low. (He said it was REALLY delicous!) His numbers have been fantastic today, so doesn't seem like they're too bad anyway.

We do have a GlucoGen HypoKit actually! It's in the fridge and I know how to use it in case of an emergency. Unfortunately, it seems the emergencies happen when I'm not home. The kit is a month or so expired, but as you said, it will have to do until we can get another one.

It's funny you should mention rubbing honey on someone's gums, because I work in Veterinary medicine and that is exactly what we do to help out puppies that come in with hypoglycemia. It's fairly common in small breed puppies who have been playing for a few hours without anything to eat. I've seen them bounce back within minutes; it's amazing how quickly it can work. Not that I want to have to use that knowledge, but I'm fairly convinced that this is a safe alternative to the choking hazard of trying to get someone to eat or drink something.