Concern for a loved one

1

Hey everyone, I'm new here as of today.

The reason I've joined this community is concern over my brother-in-law, who is also one of my best friends. Now, a little background on Ron: He is 28 years old and was diagnosed with type 1 diabetes when he was 2. He's an extremely active guy (plays sports or works out most nights), eats a reasonably good diet but drinks more than he ought to. Also, I guess he isn't able to feel himself getting Low, I'm not sure if there's a term for that. So, to finish my rambling, what's got me scared is that he's been having incidents (where he gets Low to the point that other people have to help him) far more frequently than he used to.

In the 12 years I've known Ron, I've seen him Low a bunch of times. First time it happened I had no idea what was happening, and thankfully his sister (my wife, now) was there and immediately got him to drink a sports drink and he was fine. Since then I've seen him go into seizures twice (both on camping trips), which is just about the scariest thing ever. Now, over the past 6 months or so he's been getting LOW (testing between 30-60) on a weekly basis.

It's to the point where it's stressful just to be around him, and he becomes so belligerent when he's Low that he tries to fight people off when they try to help him. So what do we do? My wife and her parents are going to talk to him about it, but is there anything I can do as a friend to help him, without being overbearing? We keep glucose tabs in our house and car, and keep watch for the signs that he's getting Low. Is that all we can do? Am I over-reacting? Is it normal for him to be that Low as often as he is?

Sorry for the disorganized posting, it's just a scary thing see happening to someone you care about so deeply, and thank you in advance for any advice.

2

No, unfortunately, you are not over-reacting. Being low can be life threatening. Most of us are able to keep it from getting to that point by constant vigilance: regular testing (8-12 times a day), promptly treating a low and working on keeping our carb intake in line and our basal and bolus doses as accurate as possible. Type 1 is often a moving target and it's hard to fit all the work necessary for good control into our busy lives, but we do it because the alternatives are too awful to think of.

Something has interfered with your brother in law's management of his Type 1 and that affects everyone who loves him. It can also lead to serious complications, affect his quality of life and even the length of that life. There are a lot of reasons people don't care for their Type 1. Some of the common ones are: Rebellion (he's a bit old for that), ignorance (he knows what to do but isn't doing it?), eating disorders, substance abuse and depression. My intuitive guess with your brother in law from what you say is one of the last two or a combination of both. While people with Type 1 can drink,or use other substances we need to be careful in how they can impact our blood sugar. Feeling "buzzed" can make us unaware of lows. But beyond that if someone is over the line into abuse and addiction, their priorities are skewed and they don't really care about the things that used to be important to them such as health, family, work, etc. Finally, clinical Depression is more than twice as common among people with Diabetes. Depression is not just "feeling bummed". It's a condition that needs treatment with anti-depressant medication, therapy, or best of all both. People with Depression find it hard to motivate to do things like take care of their D. And they can't just snap out of it the way most of us can snap out of a bad mood.

Whatever is going on with Ron, perhaps it will help if your wife and her parents talk to him. Perhaps it will help to remind him that he works out because he cares about his health so why isn't he controlling his D? Perhaps it won't help, or he'll become defensive in which case he needs more professional help for either the substance abuse the Depression or both. You're a good brother-in-law and a good friend. But is truly hard to help people who don't help themselves and it hurts to watch. All you can do is let him know you're there and you are concerned. if you can get him to come on here that would be great.

As for not recognizing lows, that is called hypounawareness. The only thing that can reduce hypo unawareness is having less lows. After a period of time without lows the awareness will return. But that takes careful management and monitoring. glucose tablets are good (if he'll take them) but if he has severe lows where he loses consciousness he needs to be injected with glucagon. I'm unclear if he lives with someone or is just around his family a lot, but anyone can learn to do this and keep glucagon around for an emergency.

3

Hi Chris, Based on what you have shared I would not come to the conclusion of depression.

How is he when he is not low ? Does he think there is a problem ? Is he familiar with and/or using an insulin pump or CGMS ? Does he know carb counting and dosing insulin based on meals ? Does he have a good endo and diabetes team that he is communicating with regarding these lows ?. If he is, and they are giving him suggestions that he is not following, or he is not even seeing them, then I might look to things like depression. Or if his endo/team is not helping, then he needs a new endo !

A CGMS is a solution for many that have lows without being aware. It is also very helpful for very active diabetics, as it can be challenging to balance BG with exercise - some exercise raises BG, while most will lower it, or cause a drop hours later.

With an insulin pump. the rate of insulin can be turned down during exercise.

If he doesn't currently have a pump or CGMS, I think it would be worth looking into.

Also, it is common for diabetics to resist help when having a low BG. Sometimes it helps to discuss it with him during times when he is not low, and have a plan of how he would like others to handle it.

It's not normal to be low that often, and dangerous to him and others.

4

Chris, Ron is so lucky to have you! Obviously you recognize that something has changed and has caused him to loosen his management, or his insulin needs have changed and he hasn't made the necessary adjustments to his insulin dosing.

No, you're not overreacting (see what Zoe said).

If you haven't already, show him your post, or sit down with him and tell him how you feel. You can't make him change, but you can certainly express your concern and love as you did above.

Please keep us posted!

5

Hi Chris,

your brother in law is sure lucky to have you looking after him. I can understand your feeling that it is stressful to be around him. I am hypo unaware and a long time T1 diabetic. I will say it is not necessarily normal for Ron to be low, but it is something that happens to anyone who injects insulin. My own lows are caught because I test very often, but all efforts to reduce hypo unawareness as suggested by Zoe are not always effective. Some of us just have a really active metabolism that just kicks up without warning. Keeping glucose and watching for signs are the best things you can do. Talking to him about it is a good idea, but please know that he might not be able to reverse the unawareness and it is not his fault. My husband and my brother carry glucose in their pockets when we walk, they know I might go low and it happens fast and they notice it before I do. It is frustrating and scary to see it happening to someone, I don't doubt that one bit. But please know also that it is sure not fun to be the diabetic! I hope Ron listens and will offer to keep a better check when he is around you.

6

I hope that Chris sees all the responses above. I think these are the most insightful and helpful responses I have seen on TuD, and without anyone getting preachy. Responders have taken into account both the person with diabetes and the family/friends needs also. I hope that Chris will realize that you all have given him excellent counsel to his questions.

7

I agree with what everyone said but I would like to throw in that there can also be some medical causes of what is happening – I know because I had that happen to me. A couple years ago, I started having bad lows and passing out regularly. I had people criticizing me thinking that I was causing it. I was testing my BS 18 times a day, literally hourly. The one week when someone said something, out of 5 days waking up close to the same number and doing the exact same thing, I had 2 days that I stayed in range, 2 that I went high and 1 that I went low. If I had changed what I was doing to prevent that 1 low, then I would have been normal 1 day and high 4 and criticized for that. Even though I had thyroid problems for years, my thyroid went kaput and I later confirmed that was what was causing the issues I had. A lot of diabetics do have thyroid issues. Even if he is on thyroid medicine, that does not mean it is being treated properly because a lot of doctors really don’t truly understand thyroid but treat it anyway.

I am currently having something going on that is causing me to run higher than normal for a few days then all of a sudden, drop back to where I was. I eat low carb (60 grams of carbs a day). I eat the exact same thing every day. I don’t use large doses of insulin and I test my BS every hour. Sometimes our bodies just don’t play nice with us.

Since he has been diabetic for so long, it is possible that he has gastroparesis – that is nerve damage to the stomach. Your food digests slower. Depending on the severity, it might be a few hours slower or it might be super slow. I had some tests done that showed I had slow digestion, but it took another 5 years before symptoms of gastroparesis actually set in. It is possible that he has it but doesn’t realize it. Blood sugar swings are an early sign of that. Unfortunately for me, those 5 years were before I found the diabetes online community so I didn’t learn that at the time!

A CGMS was mentioned – that is a continuous glucose monitor. You wear a sensor and have a little receiver. You can see what your BS is on the monitor and it updates every 5 minutes. You can set high and low alarms so that it beeps at you when you start going out of range. It was a lifesaver for me when I was having problems. I have the Dexcom and that is a popular one. The only other one in the US is made by Medtronic. They do have one that you can get without the pump.

Some good books are Using Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner. Maybe you could get one as a gift for him!

Maybe you could also convince him to join here. I was diabetic for over 20 years when I found other diabetics online. I felt like a newbie when I started reading stuff that I never knew before.

8

Lows are very scary things to see. Lows sometimes kill folks with type 1 diabetes. Folks having a low can kill through automobile and other accidents. Lows can cause problems with the law, including arrests and lawsuits.

Ron is the person who needs to do something here. No one else can "fix" this problem. There are definitely things he can do. If he doesn't, he is likely to drive away the people who care about him most. The rest of the world is often not so kind.

9

Hey everyone,

I just wanted to thank you all for your thoughtful responses.

MegaMinxX, he has acknowledged that he is getting Low too often, but that acknowledgement hasn't yet translated into action. He is aware of the pumps but doesn't seem interested in them, I'm not sure why. Impression I get is, he feels like having to wear the pump all the time would be intrusive and call attention to the condition. As far as his doctors, he has (what I have been told is, at least) a very good doctor from a very well respected program up in Boston. And from what my wife has told me, the doctors there have warned him about running too Low already.

We'll be seeing Ron later this week, and plan to voice our concerns. I'm going to go prepared with some info on the CGMS and one or two of the books you folks recommended. It can be a tough thing to bring up, as Ron is so private about it, but having him be pissed off at me for a few hours is well worth him potentially getting this back under control. I'm also definitely planning on showing him this website, it seems like such a great, knowledgeable and supportive group of people.

Thanks again for all the comments and thoughts, I'll let you know how things shake out.

Chris

10

Chris, sounds like a plan! Yeah it's not an easy thing to bring up, especially with a person who's so private.

Boston... if his doc is at Joslin then he is in good hands!

11

I don't actually think running into the (broad) range of 30-60 on a weekly basis is necessarily bad, as I've done that for years. Maybe not so many 30s though, more like occasional 60s and 50s and occasional 40s here and there. I think that wide swings in BG levels can make you feel crazier. When I was younger, I did some experiments w/ taking IV insulin, which would drop a 300 to 70 something and below in about 30 minutes, and noted that the hypo symptoms would start at around 15 minutes, 120-150 BG which made me think that the symptoms are at least partially related to the change in BG as much as the level? It may also be for me that I'm tolerant of the hypos from having them but I still feel pretty "buzzed" to use Zoe's phrase, in the 50s so I wouldn't exactly say it's "unaware"? I dunno, maybe my doc would disagree?

One other thing that makes me think that he may go up and down is the tx w/ "a sports drink" which, in most cases, will be at least 15G of carbs, sometimes, more like 30 depending on which sort of drink it is? Overtreating hypos is *extremely* easy and if he's pounding a 20-30G of carb sports drink, it will be perhaps more than he needs, leading to a high to be corrected and, perhaps, placing him at risk of starting the cycle over again?

I totally understand being very private about it. I don't really discuss anything I do with anyone. Occasionally, it comes up with my wife/ kids "I'm not gonna eat for a while as my BG is running up there..." but most of the time, I work around it on my own. Finding the online community has been great and, from other experiences I've had (fantasy baseball...), I think that message boards are the best way to discuss these sort of issues, > blogs/ twitter/ FB/ although I haven't tried newsgroups?

If he's into working out, I can't recommend both a pump and a CGMS enough. I didn't work out at all until I was 37 but got a pump and it was like flicking a lightbulb on in terms of how it cleared up a lot of what I was doing and made it easier to work out without having problems or needing to eat tons of carbs. I got the CGM a couple of years later, as I was moving from 5K-10K runs to 1/2 marathons and it made the same difference.

12

You're doing the right thing by educating yourself BEFORE you talk with him. T1 diabetes is a very tricky disease, especially when you've had it most of your life. It is hard to manage and the standards of care have changed tremendously since he was diagnosed (we didn't have pumps or CGMs 25 years ago, nor were were even carb counting!)

A few things could be going on here -

1. He could be drinking more and that alone could be causing the bad lows. I know when I drink, even just a small amount, I am far more prone to bad lows. I am also unable to feel them come on, so they get worse because I don't intervene.

2. He could be developing gastroperisis (as someone suggested). This is an unfortunate but common side effect of living with T1D for so many years. The change in digestion patterns means that you start digesting food when your insulin isn't working, but experience the peak of the insulin effect when the food isn't digesting.


3. Hypoglycemic unawareness is the term for when you don't feel your lows. A continuous glucose monitor (CGM) could help him and he should really look into getting one. Now, going down to 30-60 on a weekly basis is not that uncommon for a T1 diabetic. I am fairly well controlled but see numbers in that range at least twice a week (and sometimes more). Unfortunately, being "well controlled" means that you sometimes see more of those lower-end numbers. It's an annoying paradox of this condition. Being a pancreas is not for the faint of heart!

4. If he's extremely physically active, this too can contribute to the lows. I am also very active and found a pump to be extremely helpful in this respect (because I can tweak my basal settings for physical activity, this preventing me from going low like I did when I was on shots).

Ironically enough, his lows may be due to him trying to achieve better control (i.e., bring down highs). Also, T1 diabetes is NOT a static disease. The management of it can change over time; what works for you in your teens won't work in your 20s and then changes again when you hit your 30s. This is because hormones in your body impact how insulin is used, so you have to constantly tweak insulin dosages, diet, etc to achieve the results you want. It can be exhausting! He may very well be in one of those transition periods right now where he's trying to find what works for this phase of his life.

If you want to help him, print out this thread and give it to him. Give him this website. I have learned so much here on TuD, far more than I've ever learned from an endocrinologist! There's nothing more informative than just talking to folks who experience exactly what you do on a daily basis.

13

What the people in the thread are saying may make a bit of sense to you in light of what you've seen but, at least to me, it was VERY helpful to talk to people who had and were going through the same things I was!

14

I also think one thing that begs the question in this thread is how is his control in general? I intuitively felt it wasn't very good - that he in effect tries to ignore his D and is not very proactive in his own D care. Perhaps I misunderstood it and his only problem is the weekly lows and his poor reaction to that. But I don't think so.

And what my response (and some others) were talking to was that overall lack of attention to D which is a lot bigger problem than a couple lows.