Uncontrolled Type 1 Diabetic Spouse


(Daniel) #1

Hello, I have a partner (35) that is a type 1 Diabetic and has been since she was 12 - we have had to call the EMTS at least 12 times in the past two years; including twice within the past month, once where her sugar was LOW on glucometer and 27 after fifteen minutes. She will only test 2-3 times a day at most and refuses to check it more often, she states she has scar tissue and it hurts to prick herself multiple times; this is a multi-faceted issue because she also drinks and has a lot of coffee - dehydration makes it more difficult along with cigarettes reduces circulation/blood flow. I have read up on multiple ways to help increase blood flow to the hands including washing them or rubbing them together, even suggested jumping jacks and pushups. She still continues to not test without even trying the ways that others have suggested.

My issue is that we have a 1 Year Old son and she has not been monitoring her blood sugar well. Recently we have had her on Dexcom (CGM) but she will still have 3-5 hypos a day, often times not getting up to address it after the warnings have been going for 15 minutes and then will be have to be prompted by myself or called by family members. She blames hypoglycemic unawareness which is understandable but from the research I have seen, is able to be re-calibrated through some work… She states that her A1C is right where it should be and her doctor is proud of her because her A1C is low but refuses to tell him about the times the EMTs have been here.

Please help me, I am at my wits end and she will no longer listen to me, she has even recently taken me off as a follower so that I cannot see what her levels are and will get snappy with her family members when they call concerned. Am I being too overbearing? What can I do to help? I am concerned for my son’s safety since both times the EMT was called she was in his care.

Please, Please, PLEASE help!


(Dennis J. Dacey, PWD) #2

Daniel @Traubdor,

You may be finding yourself between a “rock and a hard place” when dealing with your partner - you are trying hard to help her and she is being stubborn and flat out refusing to give herself the attention she knows she needs. About 60 years ago when I mentioned that I had diabetes to a rather knowledgeable man, he said to me, “… now you are identifying yourself as a person who tells lies and an obstinate mule”. He based that description on his mother who had diabetes. My wife of more than 50 years will tell you that I snap at her and tell her I’m perfectly OK whenever she says I’m “Low, got check your blood”; it is a wonder she has put up with me for so many years.

I can understand that your wife could have scar tissue if she always punctures the same spot on the one finger; I check BG at least eight times every day and use all eight fingers - upper side of finger on odd numbered days and bottom of finger on even numbered days - never poking in the center pad of a finger. Now with the CGM she need not poke a finger more often than twice daily other than to validate a wild or questionable CGM reading. Not responding to the CGM alarm is her stubborn part - or she is in denial. What does her doctor say, what does the doctor recommend? I suspect there have been recommendations that she may not be sharing with you.

Keep in mind that I am not a medical doctor, but rather offering what I have learned during 60+ years living with diabetes.

A “good” Hb A1c value in and of itself means little in the abstract; although I honestly believe that A1c has a lot of value. For instance, an Hb A1c of 6.5 means that the person’s BGL [Body Glucose Level] averaged 139 over the previous 90 or so days but doesn’t tell us what numbers were averaged - what number balanced out her 27 mg/dl fifteen minutes after you began treating her? Her CGM receiver should help you and her together [doctor too] see how widely her body sugar level travels. For many years I had assumed I was doing pretty good because my A1c was always between 5.9 and 6.1 - but when I charted, graphed and really started looking deeper into my numbers I saw my standard deviation was way high - telling me I was not really managing my diabetes well. I do not use a CGM.

Your son needs her to be a better doctor to herself - my two kids did a lot to turn me around to the point I began to study diabetes and care properly for myself. If need be, play this guilt on her.


(joe) #3

@Traubdor Hi Daniel,

the simple answer is there is no simple answer. your partner sounds clinically depressed. denial over continual low glucose is classic, albeit better than an a1c of 19% it’s still a dangerous way to live.

since low blood sugar is equal (in many states) as DUI, who drives the little one around?

smoking is the tell-tale for me, in my unqualified opinion, you have to hate yourself at some level to have t1 and be a smoker. I did and I was.

urge therapy of some kind. you cannot be the diabetic police without getting sick yourself. take a look at a book called “Diabetes Burnout - What to do When you Can;t Take it Anymore” it’s $14 on amazon and even less in e-reader versions.

recognize that diabetes is a awful chronic disease, unpleasant and painful to deal with every day, relentless and exhausting, with the only reward for doing a good job being you get to feel normal for 2-4 hours. no one is immune to depression from this, the stronger and smarter you are the harder a time you’ll have with it.

good luck we’re rooting for you and your partner and son.


(Jared) #4

@Traubdor

There are a few things to keep in mind.

As mentioned above, it does sound like classic denial which can accompany depressive behavior, and such behavior is EXTREMELY common as a result of irregular BG levels (hypo or hyper).

A little about me, I was surprised diagnosed at 21, and have been T1D for about a year now. I had next to no honeymoon phase, upon diagnosis, pancreatic function was <1%. My A1C was at 12.9 and my diagnosis BG was at 498. It was questionable as to how I made it to the doctor’s appointment. Within the timespan of my next a1c (3months on the dot) I managed to bring it down to 5.1 and have since stayed comfortably between 4.8-5.5, the latter when I’m being rather exceptionally lazy with control. I started on pens, but within a month I had my Dexcom, and a few weeks later I obtained an Omnipod. Whilst the pod in and of itself it great for many reasons, there’s no reason in practical application you cannot obtain near similar results with injections (vial or pen). The CGM however, especially with dexcom’s clarity app, can provide you with a lot of acute insight into your SO’s metabolic functions.

Addressing the problem at the source, the hypoglycemia itself, keep in mind how and why it occurs, what triggers it, and how metabolic functions will cause the rate of this condition to accelerate/decelerate depending on a few variables:

1.) Stimulants.
If she is taking any form of stimulant, legal or otherwise, it would be wise to reevaluate the amount, time of ingestion, or use altogether. Stimulants, particularly amphetamines and dextroamphetamines, rapidly ramp up all metabolic processes which will, 99 times out of 100, cause a drop in BG levels than can cause a hypo in and of itself. These medications are commonly used to treat AD(H)D. Stimulants like caffeine can have a similar effect, but the amount required on average is not really worth mentioning.

2.)Stress. This is understated a LOT overall, but stress can cause hyperglycemia. This, at a glance, one would assume is the opposite of your issue. However, stress can also have a negative effect on metabolic functions and rate, and in turn cause the REVERSE by extension of these effects. Combined with a lack of sufficient complex carbs, and you could see a spike following a rapid decline, or just a straight up decline directly into a hypo.

3.) Overmedicating.
As a type 1, the average pancreatic function is <5%. There are a few odd examples of function over this limit, but by extension of being diagnosed as type 1, anything outside of this range is usually still within the honeymoon phase, which has been known to last for years in some people. This is not likely the case for you, which means 99% of the insulin in her body is that which she gives herself. If she is low, she has done it to herself (likely inadvertently, obviously). This can get tricky as her idea of insulin dosages for ‘X’ carbs may be vastly incorrect due to the scar tissue, which will cause an uneven absorption rate and can eventually lead to a hypo due to overall too much insulin or too many overcorrection boluses. My personal recommendation to test this theory would be either to use an injection site never used before (ANY subcutaneous tissue is safe, but the absorption rate will vary,ie if you tried to do legs, especially lower, it may take 30-40 minutes even with rapid acting insulin) or an intramuscular injection. These can be annoying, but it would only take one to affirm if the aforementioned issue is the case. Muscular shots will absorb much more rapidly than subcutaneous injections (2x faster on average). As a result use less insulin than currently used to dose the same amount of carbs if you want to prevent yet another hypo. I would recommend not doing it during a meat but instead a snack of carefully measured proportions (ie exactly 15-20g carbs, x insulin for her, note dietary fiber if present, record results).

4.) Carb-Intake and/or Ketosis.
Carb intake is rather self explanatory. If you aren’t eating carbs, your BG will go down unless you also stop taking insulin. This includes STOPPING basal insulin as well. I do not recommend doing this as a type 1 unless you are very well versed into the metabolic changes that occur during Ketosis (the process by which your body no longer runs on glucose, and instead metabolises fat for energy producing ketones), whilst also having testing equipment to test your blood ketones (not urine, that information is hours late). Doing this would require you not to eat anything with calories, otherwise you would have to resume taking insulin to prevent a hyperglycemia episode, as when there are no nutritionally available carbs via diet, the body has no issue converting fat and protein into it. It becomes dangerous for a Type 1 because if you do not eat anything at all, your own body is fair game when it comes to a source of fat and protein. When your body starts to break down muscular tissue for nutrients, a lot of ketones can flood the blood and cause overall PH imbalance, essentially making your blood acidic. This process of cannibalizing your own muscular tissue is called catabolism. With insufficient carb intake however, hypos can occur with a lack of carb supplementation since glucose will continuously get used as intended, with not enough to replace it. It is worth mentioning that despite 70 being the overarching “low bg threshold”, damages to the body do not begin until you hit 60 and below. 70 was established to gives us diabetics a threshold, so if/when shes at say 65,67,69 it doesn’t mean you need to go grab the glucagon asap and expect the worst, but it does mean you should locate carbs asap, whilst suspending insulin delivery (if pump) until you do eat and the just bolus (you can resume after at this point).

4.) Basal
Without knowing her treatment options, I’m kind of having to explain two different methods in parallel (pump vs not pump). If she’s on a pump, look at the daily insulin usage. It should be roughly 50% basal 50% bolus for an average day. Running a little high on basal, especially if you skipped a meal or didn’t eat as much is fine, provided no lows as a result in this timespan. If it is at that proportion, I would recommend cutting your current basal rate by about 1/4th, and if your still running the risk of hypo then by one half. Worth the basal rate up from the reduced value until you find your sweet spot. This can change often, so being used to changing this is nice. If you ever cut too much off, it isn’t a big deal provided you use that CGM to your advantage, bolus a bit if your bg is rising during a semi fast state and slightly increase the basal. Repeat until you find your desired result! — If on MDI, adjusting basal is slightly less accurate and annoying. I’ll go off my experience with lantus and basaglar. When making adjustments, I generally started low to begin with (so say you take 20 units, maybe switch to 10-15). you may require more bolus at a meal, just watch your bg to see a trend. If you need to increase the bolus, wait 3 days to average your results, and then increase it by 2 units at a time (ie you reduce to 10, take measurements for 3 days, decide that’s too low - your bolus amount has gone way up and you need more of them, so you increase on the 4th day to 12, so on so forth)

These four things contain 95% of the reasons one may have frequent hypoglycemia. This doesn’t take into account other factors such as illness, other (non stimulant) medications, and a few various disorders or conditions that could further complicate average BG values or rapid spikes and hypos.

As to her saying she has hypoglycemic unawareness, it isn’t really something you can train, so I would take her word for it. I never needed to check my BG when i was diagnosed either, I could literally feel and guess almost spot on what my BG was during the first months of being T1. After being in the A1C range of 4.9-5.5 for so long, the feeling has completely disappeared. I keep such a stranglehold on my BG levels that I don’t feel hypos until I’m at 30-40 usually, and that’s mostly speculation as it’s only happened twice (both due to negligence on my part). The tighter control you have, the less awareness (biologically) you’ll have of your blood sugar in most people. Your body doesn’t know whether or not you are low blood sugar per say, it instead notices a change in blood sugar. Going from 250 ----> 150 feels the same as going from 150—>50 relatively when you’ve been at those levels (250, and 150 respectively) for a long time. I know when I was going from 400 to normal after first getting insulin, I literally thought i was going to die. It was an awful feeling.

As for testing, the only thing I can recommend is to shop around for better lancing devices, or to use meters that can allow testing (accurately) from other (non-finger) sites. The system that recognizes pain is called a nociceptor, and if it is not triggered, there will be no pain. Scar tissue can cause extra pain since it can not only be more sensitive, but thicker, and push area of pressure around multiple nociceptors, amplifying the pain. When on MDIs, my first lancelets were annoyingly painful, so I ended up just poking myself with my MDI needles, they were ultra fine 4mm needles. Freestyle Strips require a very low amount of blood, so it worked out. They also can be pretty cheap with or without insurance, so if you don’t have them and want to try them, insurance shouldn’t be an issue. Check into their programs if desired.

This post got entirely too long for what I hope will be helpful information to either yourself or others. The above is what happens when you get diagnosed as T1D as a College Student majoring in Physics with minors in Biochemistry and Astrophysics. When I’m not doing homework, I’m still doing homework, just of the diabetic variety.

If you have any other questions, feel free to ask :smiley:

I am not a doctor and am merely offering advice in medical affairs. Almost all of my information is obtained via publicly released abstract research documentation, which can be easily located if you should so desire. I do not endorse information without first using myself to verify both its integrity and safety.