Needing some info..this doesn't seem right

[scooby83]

Hello everyone my name is Linda and I am the girlfriend of a type 1 diabetic. We have been dating about 5 months and I still have some unanswered questions about his diabetes. He is 26 years old and was diagnosed when he was 16. I'm not sure what the name of his insulin is but I know he takes a shot in the morning that he calls long acting and usually takes 2 to 3 more throughout the day that he calls short acting insulin. His blood sugar is almost always low except first thing in the morning. We checked it yesterday when he first woke up and it was 338. He takes his morning insulin shot and it seems that it just goes down hill from that point on. He will "feel funny" and check his blood sugar around 10:30am and it's usually low 40's. He will drink a regular soda or take a tube of glucose gel and will feel better. This happens everyday though. Right before he eats lunch it has dropped again to usually the 50's but will raise to 110 or so after eating lunch. By dinner time he is low to the point of it making him act totally different than normal and he sometimes has trouble speaking and is very confused. When this happens he is usually in the low 30's. After a soda and dinner he is back to normal again but once again right beofre bed he usually has another low. There has been 3 times that I've woken in the middle of the night to my bed being drencehed in sweat and he is unconscious. I called 911 and the paramedics give him an IV of glucose and he is fine within a few minutes. I know this can't be "normal". I knew going into this relationship that he was a diabetic and I accepted that, but is there more he could or could not be doing to help himself. I am willing to help in any way that i can. I have woken up in the middle of the night to him rolling around on the floor having some kind of muscle spasms and during this episode he sprained his ankle. I have asked him if it's possible he is giving himself way too much insulin and he claims no that he has to have 100 units a day according to his body weight. There are also times we have checked his blood sugar and he feels fine and is acting fine but the reading is 30's. Shouldn't he have symptoms anytime his BG is in the 30's?? I have so many questions and concerns. Please any advice would be appreciated! Thank you

[skinny 'betic]

I certainly don't have all the answers since I'm a newly diagnosed diabetic, but the 1st thing that came to my attn. is that you mentioned him rolling around on the floor in the middle of the night having "spasms"... I'm almost certain these episodes you speak of are seizures. You really should encourage him to tell his doctor about this ASAP. As for constantly getting critically low(know as hypoglycemia)he is either not eating enough or taking too much insulin. Also the cycle of getting low and then drinking soda as a recovery tactic is very unhealthy. Hopefully some of the more seasoned 'betics here can give you more thourough advice.

Good luck and God bless!

~Alex

[jenb]

Hi Scooby. You're wonderful to take such an interest in your sweety's diabetes control. But he's the one who really needs to belly up to the bar and make the necessary adjustment. Does he work with a physician?

Your description indicates to me that his basal insulin (the "long acting") regimen needs to be adjusted first. You say he takes it in the morning. How much? What kind (Lantus and Levemir are common types)? He needs to do what is called Basal Testing. It sounds to me as though he may need to split the basal into 2 doses, morning and night, and adjust the amount. He can work with his doctor to determine this. It also sounds as though he is not matching his bolus ("short-acting") insulin to his carbohydrate intake very well.

I think you should pick up one or both of these books: "Think Like a Pancreas" by Gary Scheiner and "Using Insulin" by John Walsh. Each of these great volumes discusses how to properly set basal and bolus doses of insulin and address many issues faced by insulin users.

Your boyfriend will short-circuit those wide swings if he is willing to grab the beast by the horns and learn how to make better use of his tools. He will feel better (and so will you!).

I have not addressed the nutritional aspects of diabetes control, but this will be key. If he is eating a lot of starchy carbs (bread, potatoes, rice, etc.) you might want to help him modify his diet. This can be problematic...people don't like to be challenged about their food. But if you are the one doing the cooking, start to replace the starches with fresh veggies and small amounts of fruit, whole grains and legumes in limited quantities, nuts and seeds, and lower-carb versions of things like tortillas and pita. It's a tall order! But is can be fun, and can bring out your culinary creativity.

Good luck...let us know how you do.

Jen

[Mich]

Buy (or check out) the book "Using Insulin" by John Walsh Read it out loud to him. (It's really a hot date for Saturday night.:) )

Buy a calorie King book to keep on hand for counting carbs.

Tell your boyfriend to sit down and talk with a Certified Diabetes Educator, who can be recommended by his doctor.

Good luck and thanks for caring enough to ask.

[Scratch]

It very much sounds like his basal dose of insulin is probably way too much. The purpose of his long acting insulin is that it should keep his blood sugars nearly steady when he is fasting.

His high morning blood sugar was probably caused by him going low overnight and his liver kicking in with glycogen to rebound him up.

But such speculations can only be ascertained by testing and evidence. He needs to do basal testing and the books that have been recommended can help outline that procedure.

[Joeprep4820]

100 units of long acting is a lot in my opinion. Would I be too forward by asking how much he weighs? Also, a lot depends on what long acting he is using. If he is using something like NPH, it will peak, meaning it will start acting much stronger a few hours after injection, leading to lower BG levels. With Lantus, it tends to be much more steady and last a lot longer. The reason for his early morning levels sounds like your typical combination of the Dawn Phenomenon when the liver dumps excess glucose into the bloodstream, and the basal (long acting) running out. Some diabetics counter this by splitting their long acting doses taking some in the morning and some before bed. Judging by his symptoms it sounds as if he is taking way too much insulin both of the long acting and short acting varieties.
Also, your boyfriend not feeling symptoms at such a low level is common, and is called hypoglycemic unawareness. It is normally caused by someone having too many lows or being low too often and the body gets used to being that low.

[poodlebone]

I have asked him if it's possible he is giving himself way too much insulin and he claims no that he has to have 100 units a day according to his body weight. There are also times we have checked his blood sugar and he feels fine and is acting fine but the reading is 30's. Shouldn't he have symptoms anytime his BG is in the 30's?? I have so many questions and concerns. Please any advice would be appreciated! Thank you

There is no set dose for insulin. Not by body weight, not by age, not by height - nothing. It is very individual. To me it sounds as if he's taking a set dose of short acting insulin before each meal no matter what he's eating. This is also a big problem. What he should be doing is carb counting and matching his insulin dose to the amount of carbs consumed.

If he's taking his long acting insulin in the morning, it seems to be peaking during the day when he's most active, contributing the lows. It's wearing off overnight which is why his numbers are high in the morning.

There are currently two long lasting insulins, Lantus & Levemir. They're touted as lasting 24 hours, requiring just one injection per day, and they claim to be peakless. Many people do find they have a peak and that the insulin does not last 24 hours. Splitting the dose and taking it twice a day (about 12 hours apart) can be a big help.

Does he see a doctor on a regular basis? If so, is it a primary care doctor or an endo? He should be seeing an endo who can help him to work on carb counting, matching his insulin to his food, working on a correction factor and more.

As for not feeling any symptoms of lows, that does happen. I was like your boyfriend, feeling perfectly fine at 30. I would pass out & have seizures. I switched to a pump 4 years ago and it has literally changed (and probably saved) my life.

[scooby83]

To answer some of the questions, he goes to a regular physician not a specialist. He has only gone to him once since I have been with him and that was for blood work and just to check how everything was going. Neither of the insulin types mentioned sound familiar to me. They are in bottles with an H on the front. One is clear and one is cloudy looking. He is 6'4" and weighs 255. I'm not sure how to bring all this up to him. Anytime I have tried to discuss his insulin doses he is very much against lowering his dose at all. He says he absolutely must have the 100 units a day minimum for his weight.?? He is very concerned about being high and it having long term effects, but I think he is going way overboard. Any more suggestions would be great. Oh and also his diet is not good. He does not eat meat, hates eggs and fish, so he basically lives on vegetable soup, pizza, garlic bread, and macaroni and cheese..

[HayleyRose]

100 a day does sound like a lot, everyone is different, but typically by the time your 26 your hormones are balanced out and you don't need as much. Also, I have never, never, been told how much insulin to take based on body weight. I think that the best thing to do is ask him to go to a diabetes specialist. If, for some reason, he says no you have to keep telling him, to many low are so so extremely dangerous. And reading books are great, for you and him.

Best luck!

[Joeprep4820]

He most likely uses Humalog and NPH from what you are describing, and the fact that he is using NPH is surprising considering that it is more or less obsolete from my understanding, especially for Type 1 Diabetics.

[jenb]

Scooby, you are right to be concerned about your boyfriend's unwillingness to control his blood sugar. His swings from low to high can be quite damaging. To moderate this will take work on his part and it is not clear that he's willing to do what it takes. Perhaps you can persuade him to talk to an endocrinologist who specializes in T1 diabetes, or to get some assistance from a Certified Diabetes Educator. If he's psychologically "stuck", maybe he can get some counseling that will enable him to move forward. Diabetes can be mentally exhausting and we all go through rough patches.

Unfortunately, you cannot do these things for him...he's got to do it for himself. Has he explored Diabetes Forums? Maybe we can offer him some assistance.

Jen

[Grunch]

To answer some of the questions, he goes to a regular physician not a specialist. He has only gone to him once since I have been with him and that was for blood work and just to check how everything was going. Neither of the insulin types mentioned sound familiar to me. They are in bottles with an H on the front. One is clear and one is cloudy looking. He is 6'4" and weighs 255. I'm not sure how to bring all this up to him. Anytime I have tried to discuss his insulin doses he is very much against lowering his dose at all. He says he absolutely must have the 100 units a day minimum for his weight.?? He is very concerned about being high and it having long term effects, but I think he is going way overboard. Any more suggestions would be great. Oh and also his diet is not good. He does not eat meat, hates eggs and fish, so he basically lives on vegetable soup, pizza, garlic bread, and macaroni and cheese..

1- Tell him to go to an endo. Go with him to make sure the doctor knows all the issues.
2- He should probably use lantus as his long acting insulin.
3- If he doesn't want to use lantus he should at least split the long acting into 2 doses 12 hours apart and very likely lower the dose cause he's taking too much.
4- Tell him that everyone at diabetesforums agrees that determining insulin dose based on body weight is bullshi.t. The dose should depend on his blood sugar and since he's going low all the time he should lower the dose.
5- Ask him the names of the insulins he takes and how he determines how much fast acting he takes before a meal so we have more information to give better advice.

[HayleyRose]

Ok, so he's worried about the long term effects about high blood sugar. I understand that, every one here does, I'm sure. It's scary, but easily prevented with the right care. Right now he does not have the right care. Hypoglycemia can be more dangerous than high blood sugar in many cases, more life threatening sometimes. Low blood sugars have long term effects, too. It can also have quicker effects, as you saw the seizure, if hadn't been there worse things could have happened.

I know this sounds scary, but it doesn't have to happen, things will get better if goes to the right doctor and actually listens. Consider going with him if he'll let you

[Subby]

His blood sugar is almost always low except first thing in the morning. We checked it yesterday when he first woke up and it was 338. He takes his morning insulin shot and it seems that it just goes down hill from that point on. He will "feel funny" and check his blood sugar around 10:30am and it's usually low 40's. He will drink a regular soda or take a tube of glucose gel and will feel better. This happens everyday though. Right before he eats lunch it has dropped again to usually the 50's but will raise to 110 or so after eating lunchBy dinner time he is low to the point of it making him act totally different than normal and he sometimes has trouble speaking and is very confused. When this happens he is usually in the low 30's. After a soda and dinner he is back to normal again but once again right beofre bed he usually has another low. There has been 3 times that I've woken in the middle of the night to my bed being drencehed in sweat and he is unconscious. I called 911 and the paramedics give him an IV of glucose and he is fine within a few minutes. I know this can't be "normal". I knew going into this relationship that he was a diabetic and I accepted that, but is there more he could or could not be doing to help himself. I am willing to help in any way that i can.

Hi Linda, your post is very cogent and your boyfriend is very lucky to have your help with this. Your thoughts are correct - things could be a lot better, this is not "the way things are" (unless your boyfriend makes that the case, makes it a self prophecy).

Dealing with diabetes and insulin dependency requires two main things in place. One is the right attitude, parts of which include perserverence, effort, some self control, adaptation etc. There are obviously levels to this, but I want to come back to this after mentioning the second thing.

The second is having the right treatment plan. When it comes to insulin people's bodies tend to be quite different. Looking at the aim of staying with an even BG through the day, when it comes to different insulins, one may or may not work so well for someone, and there are certainly older and more outdated insulin types and practises out there.

The basal requirements through the day, the bodily needs you are trying to match with long acting, can also be up and down on their own accord. I'm not trying to suggest they are completely random, but for example, someone might need a lot more insulin action overnight, or a lot less in the morning, or... and working out what is needed and what works does often mean experimenting with doses and types and timings, and really following through.

So both things: a good attitude and motivation to work with it etc, plus the right regimen (or working towards the right regimen), are required. Often the first gets the blame, but the second can be the forerunner for issues. I'd suggest that your boyfriend has not got his treatment worked out. Of course attitude is entwined, and it seems he might not be forward thinking about considering changes. My guess is that this is the kind of fingers of denial that most of us have at times especially when things are hard and frustrating and we don't feel positive about the way ahead.

That said, this is where you got to, aye, with asking/suggesting about his long acting. And I think it's evident to us that you are completely right, if you go low through the day like this, reducing long acting is a logical step. The weight thing - it's a reference that weight increases IR and so often increases dose, I'd say a comment from a doc from the past he held onto, but it's not relevant - there is no reason in the world one should take too much basal.

Considering that you didn't get anywhere with this extremely sensible comment/suggestion (although useful to remember all control issues can be sensitive areas), I think the only thing to be done is outline your concerns that life is harder than it should be, for both of you, that going low repeatedly and swinging high as a result (this is what occurs) is not good for his health, and encourage him to see a good endo to assess his entire insulin regimen. What I don't know is how you should do this - make it a big deal, be firm, etc etc. I don't know if you can really help him line up an appointment, even go to the first one. I do know that with this tricky condition, it's common to be extremely defensive about criticism, and in the end it does need to be his choice to improve his control.

The other thing you could be encouraging, is gaining more understanding about the condition and about insulin use. There are so many dry, useless books about diabetes that I stopped bothering with them at the time years ago. But there are a couple of fantastic books, Using Insulin and Think Like a Pancreas, that could help clear things up, and suggest ways ahead to better control and a better life, with or without a doctor.

[poodlebone]

Neither of the insulin types mentioned sound familiar to me. They are in bottles with an H on the front. One is clear and one is cloudy looking.

It sounds as if he's taking Humulin NPH (long acting, the cloudy one) and R (Regular, short acting). Both are available without a prescription and are less expensive than the newer insulin analogues (Lantus/Levemir for long acting, Humaloh/Novolog/Apidra for short acting). The combination of NPH + R can be brutal. They are both very peaky. NPH nearly killed me a few times.

He really should see an endo. Mosy primary care doctors are pretty clueless about Type 1 diabetes and won't offer any advice about dosing, changing insulins etc. Seeing an endo would be his best bet.

I was also concerned about running high and had many lows. I lost my hypo awareness and that's why I'd pass out & have seizures. I had no idea my BG was low and it would eventually go so low I'd pass out. It's no way to live. At the time I was only seeing my primary care doctor and she pretty much liked to pretend I didn't have diabetes. Sometimes she would say I should take less insulin but couldn't say how much I should be taking. I passed out at work again one day in 2005 (not the first time) and my co-workers called 911 for an ambulance. I was treated at the scene, they got me conscious and I refused transport to the hospital. Later on my co-worker came into my office and stoof behind me until I looked up an endocrinologist and called for an appointment. I'm so glad she did that, because I would not have done it on my own. I don't like going to doctors and thought I'd eventually figure it out on my own. I have no passed out, haven't had a seizure and haven't required any help at all to treat a low since my first appointment with the endo. The first thing she did was get rid of the NPH and put me on Lantus. That alone made a huge difference.

[ramon]

Thank God he has someone like you. You have to face the facts, I know this sounds cruel and cold but what happens if one day while driving he has a seizure and hurt himself or even worse some one else. That happened to my boss and his life turned into a nightmare as well as the loss of his drivers license. Get him involved in this forum......PLEASE

[CarrieJett]

Wow, it must be very hard to watch your boyfriend go through this! Besides the scare of watching him seize and act strangely, blood sugar swings wreak havoc on your emotions, causing irritability, depression, anger in a lot of people.

I didn't want to go to the endo for a while, and I kept saying I was doing great on my own, till my partner said "Actually, you have a lot of low blood sugars, you wake me up almost every night with it and I am not getting enough sleep, you are grumpy from the highs, and we have to stay home a lot when you don't feel well. You still manage to do a lot in your life, and it is pretty impressive. Maybe it is the best that you can do, but maybe not, because it actually negatively affects our life every single day. I hope a doctor can help make that better." She said it in a very matter of fact way, and I actually was able to hear that it was true.

You and he don't need to be stuck with this reality. It may be hard to bring up, but I would sugest a calm talk where you try to stick with the facts. "Your blood sugar was over 300 this morning. It was under 40 4 times yesterday. I wake up almost every night becuase of your spasms. I think it's possible that you don't have to live this way."

Don't even attempt any of this if he has low blood sugar! that may be when you're most frustrated, but he won't be able to hear it. Try when he is in a good place, and you can appeal to his desire to feel better more often. Good luck!

[TommyC1]

Plain and simple. If he's having repeated hypo's as you have described (any reading under 70 is hypoglycemia), then he's taking too much insulin. Depending on what he does where he is and his overall health he may be putting himself and others in immediate danger. The 300+ in the AM is not good long term either.
If he is willing to take this on then I agree that "Think Like a Pancreas" and "Using Insulin" are the best places to start. Both of those can be had from Amazon.
Get him on here if he will. There's a fair chance that someone here can connect with him and help him understand what his options are.
A new Doctor might help. But I view choosing a Doctor with no clear idea of how you want to go as a crapshoot. He might get lucky. But there's plenty of well educated fools treating diabetics. Better to get an idea of what his options are and how he wants to deal with them and choose a Doctor that can help him do that.
Finally, this is something he has to do. No one can do it for him. If he is not willing to try I suggest you start looking for a new boyfriend. There's not much future for a guy who won't try.

[scooby83]

Thank you so much to everyone! I am meeting my boyfriend tonight to discuss everything. I did find out that he is taking NPH and the other bottle says humulin R ? I think it says rapid underneath it.. I will be back tomorrow night to let you know how tonight goes. Thank you so much for the advice and I will defintely tell him to come to this forum!

[strack350]

I hope all goes well with your talk with him. I made the switch from NPH and Humalog, like he is using to Levemir, and Humalog. It was the best decision I've ever made. Far better control now, less lows/highs and great A1cs to boot:D

[mgraytex]

I wonder if you can help me with posting> New to forum, can't find step by step instructions and would like to post, don't understand "treads" etc. Can you help me?
mgraytex

[princesslinda]

Mgray, to the rt of your screen you'll see "site navigation." Choose "forums," which will pull up a listing of all the forums to choose from. Pick the one you want to post under. When you are in that particular forum, there will be a box at the top left of your screen that says "New thread." When you click on it, you'll see a blank screen area where you can start your own topic. Type it there and then hit reply/submit post.

If you are reading a post and want to reply to it, at the top right of the page you'll see a gray box with "new reply," click on it and then type your post (just as you did when you posted your question).