Good very early morning to you all. I haven’t been to sleep quite yet, but still! I came to this site to seek some support, maybe even find some other people in my shoes. I am the fiancé of someone that is Brittle T1D. This past Wednesday night I experienced my fiancé hit such a low that I had to give her the Glucogon shot. This isn’t the first time in our three and a half year relationship, but for whatever reason, it was the most traumatic time that I’ve had to give her the shot. It’s been several days now since and her sugars are still not recovered fully. I haven’t been sleeping because I’ve just been staying up watching over her to make sure she is okay. This is weighing on me so heavily and I worry so much about her. I’m not trying to be a baby because I know she has it so much worse having to be the one going through it. I just don’t have anyone that I can talk through these things with. If anyone has any advice on how to support her fully, and also how to take care of my own mental health, I’d be forever grateful.
There is help. I am glad you are asking.
Hi @NixxilYnn and thank you for writing, and being such a wonderful and patient partner. She is blessed to have you. If she has not looked into one yet, a continuous glucose monitor could make a great difference. Most have alerts to let you know if you are doing our rising; and ones you can set at your desired BG level so you will know if she needs something to eat - or is running high - before things reach a crisis level.
I use the Dexcom G5 and it’s given me and my husband peace of mind. If that’s not an option for you there is one called Freestyle Libre. Rather than doing fingersticks you simply swipe the receiver over the sensor, which is inserted in the upper arm. Once you do that it gives you the current number as well as a graph of readings saved in the sensor since the last swipe, so you have a constant record. BUT it does not have alerts.
Hopefully she is working with her endo and dietitian to make adjustments to her insulin and find snacks that will keep her in a good range overnight. My dietitian suggested yogurt.
Keep us posted! We’re here for you.
Hello, thank you so much for the responses. My partner does have a CGM (Dexcom G5), and a Tandum pump; the two do not work together so any corrections she has are completely done by her. The thing is that we spend so much extra time and money into this, which I fully support and would try anything for her to have some comfort. She eats so clean, drinks Glucerna everyday, has a Glucerna snack everyday, takes vitamins specific to diabetic health, works out five days a week (at least). I’m extra worried, because I recently read an article released by Dexcom that they will be discontinuing the G5 and G4 in June. Her insurance will not cover the G6 so she is likely to loose her CGM in June. This is so scary because: two years ago her doctor was able to get her the G5 and six months later her insurance sent her a letter stating that she no longer qualified for the G5 because she didn’t have enough lows, even though it was prescribed to her because she was experiencing those lows and it helped her so much to avoid them. After a very long fight, she was able to get it back but to say that didn’t emotionally break us both I would be lying. She had to re-teach herself to feel lows and highs because she became so dependent on the G5. The G5 she has now has a whole different set of issues that she didn’t experience the first time around. When the transmitter is close to needing replaced (about 21 days out) it starts giving her absurd amounts of false readings. My partner has not had an actual doctor in two years, she sees a CRNP, and she gets to scared of them and insurance to truly talk through things. I’ve gone to every single appointment since we started dating. I usually speak up if I feel I absolutely need to, but I try to allow her to advocate for herself. I’ve seen her look at the CRNP and tell them she feels tingling in her feet and they legitimately pretend like she doesn’t say anything. We live in a very small area with not a lot of Endo options unless we drive nearly two hours away. I’ve looked for support groups and they don’t truly exist in our area again unless we drive nearly two hours away. I’m hoping this next piece shows a little more history on what we’ve done so far to help her. My biggest fear is that I will loose her in the near future. We are only 31 years old, but I’ve never seen her BG this out of control. I’ve tried getting her numbers to other doctors and talking to her about changing doctors, so far things have remained the same and I don’t want to step on her toes with any of this. I feel like it’s very hard to be a T1D of course, but to be in love with someone that is a T1D is just as hard because there are sooo little resources for us. She always tells me she wishes that she had T1D friends so that I could have partners to talk to as well because she hates how much this effects me, and I always tell her I wouldn’t change this because it doesn’t bother me. And truly it’s not diabetes that bothers me, it’s the fact that I don’t know how to help her and I’m a helper, a planner, I like to find solutions and this is totally out of my hands.
I’m also a person who likes to find solutions. I haven’t heard anything about the G4 or G5 going away. If you have the article could you attach a link? I would hope her insurance would cover it if he other options are being discontinued, although you may have to fight again. There are frequent posts on the forum from people looking for friends with diabetes. They may not know anyone else who has it and are looking to connect, so she could plug in “friends” in the search engine, or start get own thread - might be helpful to indicate where you all are located - you may find friends in your area!
I may have missed this, but is she on a pump, or injections, and how long has she been living with diabetes? Also, does she have issues with highs, or just lows? I hate to hear about people who don’t have access to good care, and although your options are a couple of hours away I would encourage you to find an endo, preferably with a diabetes team including a nurse educator and dietitian. I think many of us have quarterly office visits (although I don’t know if that applies to those who are brittle), and can share information electronically so doctor can advise us by phone. I hope that may be an option for you.
@NixxilYnn Hi Nikki and welcome to the JDRF TypeOneNation Forum! Thank you for joining this site, although it is a real trial that brought you here, and thank you for opening this Topic.
I’ve come to learn, after living with my diabetes for 60++ years, that diabetes is harder for those who love and live with us than for the person who has this condition; at least the emotional part is more difficult for you. I AM NOT a medical professional, so the suggestions I offer are from the perspective of someone in your partner’s shoes. I managed well with a Tandem t-Slim pump and a DexCom G5 that wouldn’t connect to the pump.
I very strongly suggest that you work with your partner, making good notes, and completely re-work the “personal profiles” she has in her pump. Look first and foremost at establishing accurate basal rates [I set up basal rates changes at 2 hours, and then eliminated the unnecessary] - initially, have these rates a little lower than what is now set in her pump. Watch what happens for a couple of days before making any increases in rates. If you get her basal rates set fairly accurately, she should be able to “fast” for extended periods without need for any bolus insulin. This takes time, love and lots of patience.
You and your fiance have some really good resources at your fingertips, well on your computer.
Tandem t:Connect. Dexcom Clarity. Tidepool, a JDRF sponsored third-party application. I only recently ‘discovered’ how awesome the Tidepool “Daily” report can be; this report places on one page / one screen, DexCom CGM line-graph, under that, Bolus bar-graph, and under that, bolus rates in continuous-flow bar-graph. This has allowed me to do some really helpful adjustments.
I will do whatever I can to help you doing wherever you need. I also think that your partner and her doctor may be able to make the argument that an upgrade to the G6 monitor [no change in cost] would in the long run be beneficial and help her avoid expensive hospitalization - this would enable her to up-grade her pump [free upgrade for in-warranty pumps] to Control IQ. I’ve been using CIQ technology for just over two months and have had really good results, but, my basic basal rates had to be correct before switching to CIQ.
Please stay in touch!
Sorry if this sounds a little demanding but im exhausted and do mean well.
Get a nurse, doctor or diabetes educator that you both feel comfortable with that genuinely cares and has your back.
Before you go to your next appointment, take a couple minutes and grill them to make sure they are up to par. I honesty can’t believe how many “endo’s” have had there head stuck in the sand for 20-30 years.
Once you find someone awesome you must go at least 4 times a year or more for insurance to even consider any changes. Have a phone conversation or reschedule if you must.
After you guys have gone 2-3 times research and tell them specifically how a g6 would be a huge benefit to you and your partner over a g5. Especially if your transmitter or receiver are having problems. As an example I had 3 g5 receivers fail on me and that prompted my doctor to ask for an upgrade. Ask them to consider it and if so, would they send a letter of medical necessity on your behalf to your insurance company. Now this doesn’t mean that insurance will automatically cover it but it is you best chance at getting any results.
see If you can Get a therapist that specializes in chronic illnesses. Find someone who is diabetic, has a spouse or family member that is or at least treat a few of there patients with the condition you they can give you good advice.
I would say is when you can find an insurance company that already covers what you use or might use in the future. That may save a few headaches down the line.
The last and more extreme option is to move to a decent sized city in a state that will cover most of your needs. Best of luck to you both.
I hope Nikki @NixxilYnn that you are able to relax a little bit as you help your partner get her hands around managing her insulin dosing. After having written and read, I found I wanted to add three bits:
- A quick, and simple temporary “fix” might be to use the temporary basal rate adjustment on her pump. Begin with 8 to 10 hour duration and set her basal rate at 75%; make this setting just before bed-time and it might prevent overnight “lows”. Then try a similar method for other times of the day while together you figure out some “good profiles”.
- Effective, and long-lasting TypeOne Management requires you to be Doctor Me! That said, each of us MUST be able to accurately calculate and set basal rates as well as carb:insulin ratios - self education. (My opinion; I’m not currently a licensed practitioner.)
- According to a posting on the DexCom Facebook page, the G5 will be phased out beginning June 2020.
Take a few deep breaths and relax.
Number one, demand to see an endo. Nurses are not docs. Also, I understand where a nurse sees a diabetic, an endo must see her at least once a year. A nurse should never be allowed to take the place of a doctor completely. I’m willing to bet your state requires oversight of nurses by an MD. You could complain to the state medical board about inadequate care by a nurse.
Number two, do everything you can to have her switched to the g6 sensors; use Tandem to help. There is at least one rep for your region. I don’t know why insurance would not cover g6, esp after Dexcom stops selling the other ones. I didn’t know there’s a price difference. As far as not enough lows, would they be happier if she died while on a walk or workout and got so low she wanders into traffic? It happened to me when I was young. Thankfully I didn’t get hit. That insurance company will pay thru the nose if that happens.
Number three. Since she’s on a Tandem, I think her two key ratios aren’t set right, and nurses aren’t generally trained enough to set the ratios correctly. The two ratios are the carb ratio, which is how many carbs can be eaten for each unit of insulin taken. If she’s getting the lows after eating, say 2-3 hours, I would look at raising the carb ratio. The other ratio is the Correction Ratio, which is how much insulin needed to compensate for the amount of glucose above her target level (usually around 120 mg/dL). So if she needs one unit to bring down her glucose level 40 mg/dL to get back to her target, the ratio would be 40.
Getting these two ratios right is quite tricky. Tandem can help a lot with that.
Another trick diabetics should use is to cut the basal level to half or less about a half hour before working out. Don’t raise it back up till done working out. The amount of time, and the percent cut in basal level, depend on how intense and how long the exercise is. About an hour after beginning exercise, the glucose level wants to drop fast. So you want the glucose level to be on the high side before the fall starts to happen. When I go hiking, I stop my basal altogether for an hour, based on a 1.5 hour hike. If my glucose level drops during the hike, I turn the basal lower or just off.
Once you get the two ratios set, the Tandem/g6 combo should almost eliminate the fast crashes, because it does a very accurate job estimating how much insulin you need to bring down the high. Plus,Tandem recently came out with an update that lets the pump automatically add a bolus if the pump predicts the rate of rise is excessive. That takes the fear out of figuring out how much to bolus for a meal.
Hi. I read @davyboy’s post and wanted to clarify what I wrote earlier in case the is any confusion: there are nurses and there are diabetes nurse educators. The nurse educators have specialized training which, while it does not make them doctors, qualifies them to help us manage our diabetes in ways that nurses (despite all the amazing work they do) cannot. DNEs can be an important part of your health care team, but should not take the place of a physician certified in diabetes care.
Also be sure to find out for yourself what works best for your exercise program. I personally used to like to be around 220 before I worked out, but my doctor told me to take that down as low as about 150. I may have changed up my snack a little but I stayed level, which was a nice surprise. Also some types of exercise may cause glucose to rise, at least for some people. So be sure to find what works specifically for you.
The G6 should help. I should be getting mine in a few weeks and there is some reading and training involved. I believe you have to have your insurance authorization and your rx before they send the link to the video training, but I was able to find the G6 manual online. Being on the G5 some of the material in this long read is familiar, but there are some menu changes with the upgrade, not to mention the technical specs and features to familiarize with. I will do in office training once it arrives.
If you don’t mind my asking, what insurance do you have? In my experience my doctor’s office has been able to overcome any insurance issues. I upload my CGM data and share it with the office so they have plenty of data and graphs to make a case for medical necessity.
Recommend asking her diabetologist specialist to apply for a Continuous Glucose Monitor (CGM). e.g. if she gets a Dexcom G6 CGM it will give you both a 20 minute advance warning of a coming hypo.
NHS policy on these for T1D has changed in 2020. My diabetologist applied for one for me in 2019, refused by local NHS CCG, new application in 2020 was approved.
Hi! I’m a T1D. I upgraded to the G6, which I’ve found to be MUCH more reliable and accurate! My husband also deals with me, but if I show an arrow pointing down, and I’m already low, he calls me from work and stays on the phone until I eat or drink something. Do you have the Dexcom share so you can see! If not get it!
Is your partner eligible for G6? Most people are moving to a G6
Is her pump an Tslim X2?
This pump will assist by by stopping pump if low and giving auto corrections if highest as the G6 is paired .
Hi I’m 54 years of age God willing 55 October 13. I’m a Brittle Diabetes Type 1. It is very hard to control brittle diabetes . For me I have been in a comma for a week due to hypoglycemia. So many lows so many emergency in and outs. Loosing consciousness and not knowing how and why I ended at a hospital. Early retirement from Uncle Sam because of the Hypoglycemic attacks. Exercising can be a problem. I’m not trying to scare you it is what it is . A free style Libre or on going glucose monitoring is in my opinion mandatory and people who will love with patience and not judge also a must!