Thankfully you have pulled through but If you are ever vomiting you should go to the ER, but don’t take my word for it - use the attachment in my previous post as a guideline for when you should go. Diabetes should not leave you feeling constantly or even frequently miserable, so if you’re feeling badly enough that you think you need care, go.
No one wants to be in hospital but that might be a turning point for your care. You should not be so ill advised at this point in your diabetes, and that is on your current doctor. Likewise your pump training should have been comprehensive enough for you to understand the functions and when and how to make changes - although until you are experienced enough you would do that with guidance from your health care provider.
My endo has an office in a local hospital and is well qualified in treating Type1 patients. If you have to go back to the hospital due to DKA it might be worth checking to see if there are doctors there who can provide continuing care. Yes, I know you said doctors are few and far between in your area, but you never know.
I also encourage you to contact Joslin.
It’s a shame that “stranger friends” on this site are showing more care and concern for you than your physician and “educator.” If the need arises again I hope you will go back to the hospital and get a fresh start so you can get back to living life as you did before and may even share comments and learnings on the forum.
Did you ever call Medtronic😊?
I wasn’t diabetic until last November. The concensus is the Keytruda (my current cancer treatment) killed my pancreas. My glucose is one of the zillion things my oncologist checks every 3 weeks. Until November I had been either side of 100.
In clinical trials less than .o1% had their pancreas die. Leave it to me!
I had zero knowledge of diabetes before last November.
There’s no way I will go back to the hospital that “treated” me in November. It’s also the place my “diabetes educator” is associated with. I’ll travel the 45 miles to the next closest hospital. My chances of survival would be much better!
I’m going to call Medtronic today though my experience so far with them has been they read from a script and always tell me to contact my doctor.
It is what it is - I’ll get through this because I have to!! I’m beating Stage 4 cancer - my oncologist calls it a miracle - not going to let diabetes take me down!
So true about “stranger friends” on here!! Everyone is amazing!! Allowing me to vent helps more than you know!
Are there other hospitals you can choose from? There are several in my area but I know that’s not the case everywhere.
I checked with a friend who is a diabetes nurse educator and she said contacting Medtronic is a good idea. My natural tendency is often to take what I’m told and not push back - but when it’s a matter of health and/or life is at stake I’ve got to break that habit.
If the rep pushes back be prepared to notask but tell the rep to put you in touch with a manager/escalate your call. They should want to do that since their “trainer” has not given you the knowledge you need to live with a medical device. When I’ve had training my reps were more than willing to answer my questions and address my concerns and curiosity. The education they provide could be a literal matter of life or death: a pump is not a “plug-and-go” toy but a serious device that requires work, commitment and participation; and your trainer is not treating it as such. So if your trainer…
was not clear in their training,
did not answer your questions,
was not respectful of you as a patient and learner,
seemed to think you got all you needed to know from the video you watched,
did not prepare you to make changes recommended by your doctor (and no, I haven’t forgotten your doctor is an 🫏 but you get what I’m saying),
didn’t respect your curiosity or your questions,
and simply made you feel as if they didn’t respect you as an individual -
Medtronic needs to know. Escalate, escalate, escalate to a higher power.
Elizabeth, I’m sorry to hear this! My father has the same exact story - skin cancer being treated with Keytruda, became a Type 1D (he had the antibodies) and developed a low functioning thyroid as well. His thyroid was at 56 and his endo suggested a small dosage change - which ultimately worked over a period of months. Please make sure your doctor is checking your TSH and not your T4 free. His T4 free was in range while his TSH was off the charts. I am not a medical professional but someone who has seen a similar situation. I am a T1D and watching an 89 year old learn about carb, lows/highs, etc. has been humbling. I would also mirror what someone else on the board said, there is nothing wrong with taking multiple shots a day if that is what is working for you. We opted to have my father give himself shots than deal with a pump and all the things that go along with it (I have a hard time with my Omnipod and I am 30 years younger than him.)
Good luck and please keep us posted on how things do. Also, it is great to hear your cancer treatment is working.
Wow, I don’t know anyone else who has developed Type 1 from Keytruda! I hope your dad is doing well.
My oncologist is amazing! He runs tests on everything- every 3 weeks, except thyroid which is done every 3 months. He has upped my thyroid meds 3 times and last time it was much better. He does test 3 things for my thyroid.
I’m so blessed that the Keytruda, chemo and radiation are working to kill my cancer!!
You and everyone else on this site are such a help to me. My diabetes person is awful and when I called Medtronic- well, lets just say they were less than helpful. They don’t want me to change anything without input from the diabetes person!!
I see an endocrinologist in October!!
Thanks so much for your input!!
They wouldn’t transfer you too someone else even though their Medtronic rep is incompetent?! At this point I might be consulting with an attorney, or perhaps contacting my state medical board to ask about my options.
It’s Joslin any option? They’re in Boston which is a few hours from you, but it could be worth it.
Crazy, huh? Joslin is over 250 miles from me. Traveling the 85 miles every 3 weeks for my treatments is a challenge. We have dogs, cats and chickens. Gas is a big deal for us - we only have a truck that gets 16 mpg. You’d think someone would loan us a vehicle. And “druggies” live next door to us now.
I’d have to see what my insurance would pay. Right now my bill at the cancer center is well over 20,00. - thankfully they have me on a payment plan.
I see my diabetes person 2 weeks from today. She may end up kicking me out of my appointment! I think if I continue to have days with my glucose so high I’m short of breath I’ll go to the hospital that’s 45 miles away- NOT the one my diabetes person is associated with. It would be the one the endocrinologist I’m scheduled to see in October is associated with.
Today has been a good day for my glucose - I’ve been entering more carbs than I’m actually eating and it seems to be working - today anyway!
One day at a time!!
If you have to fudge your carb count in order for your numbers to be good after meals then you probably need to adjust your carb ratio. I’ve only seen I:C ratios done in even numbers, so if my ratio is 1:12 and that’s not enough to cover my meal, I would change it to 1:10 - but not 1:11.
You may or may not need the same carb ratio for every meal or at all times of the day.
Oops - correction - when my ratio was lower I did have 1:15, then went to 1:12 followed by 1:10. Sorry. The key is to change in small steps and see how that works - they say to allow 3 days to see how the changes are working.
Yes! The hospital had me at 1:10 and 1u for every so many over 140, with 17u Lantus every morning. I was overdosed on insulin like crazy! Lows ALL the time, I really had to raise the devil to get my diabetes person to change it.
Then I got the pump - she started me at 1:17 then 1:15, now I’m 1:11.
I’m an idiot when it comes to diabetes and this pump but jeepers - even I know something has to change!!
I’m glad you have a visit in two weeks - that’s something at least. It might help to take someone with you - a friend or your husband who can push through some of the blowback - the disrespect - you’ve been getting. Something to think about.
PS - my friend the DNE says it is your right to have someone with your throughout the visit - and it’s actually a good idea.
If the provider tries to tell you the person needs to leave, know that It’s your choice, not theirs.
Yes! My husband went with me the first time. That visit is a blur to both of us.
I’m pretty sure I’m going to take him on my next ( and no doubt, last) visit.
I just feel like I have Stage 4 cancer, yes Keytruda is working but for how long? I don’t think I should have to worry too much about what I eat, etc for whatever time I have. I refused to take statins “because your cholesterol could go up”.
I despise salmon, LOL, but they keep hounding me about eating it. Nope, I’ll eat my haddock and halibut and call it good.
Thanks again for your concern- it means a lot!!
I was diagnosed in 1963 and the “diabetic diet” consisted of a very short list of “approved foods.” I don’t think it’s much of an exaggeration to say the list was not much longer than a postcard.
Now we can eat pretty much what we want so long as we know how to account for the carbs. Of course healthy choices are better - diabetes or not you would do better having fruit for dessert than a hunk of cake; and getting plenty of fruits and vegetables - but we can choose.
I don’t have experience with cancer and nutrition, but I imagine recommendations for us are not very different from others you are advised to follow.
I hope you’re able to learn how to dose your insulin so it works for you and the foods you enjoy. And if someone gives you salmon - send it my way😊!
Yup, you can have my salmon!!
I’ve never been a big sweet eater, my downfall is barbecue potato chips.
I did a ton of research when I was diagnosed with cancer - it “feeds” on sugar!
I’m a freak about what I eat - I’ve always been a label reader. Now I also weigh, measure and count too. I keep a very detailed journal. There doesn’t seem to be any rhyme nor reason for my high glucose.
I really think my wacky thyroid and cancer/treatments may be playing a role.
I’m gonna hang in until I see that endocrinologist in October!!!
What’s your active insulin time? It is really that and the carb ratios that you can change that will affect your numbers. Are you set at two hours? I’m not a medical professional but my daughter is on Minimed 780
My active insulin time iis set for 2 hours and my carb ratio is niw 1:11.
This whole process has me so confused - 3 days ago my glucose was 111 and I ate a bowl of American chop suey (elbow macaroni, hamburger, tomatoes, onions and peppers). I ate quite a bit so I basically picked it apart so I could measure the macaroni and tomatoes separately. Anyway - I called it 60 grams. 1 hour later I started getting alerts - my glucose was going up and up. BUT-every time I did a fingerstick I was between 90 and 120!
Yesterday I ate the same thing for lunch-but much less. My glucose was 115, I called it 20 grams. Half an hour later I was crashing big time-actually got down to 63.
No active insulin showing either time.
I still think the fact I’m taking cancer treatments and my pancreas and thyroid are dead has to be playing a part.
I can eat the exact same thing for breakfast, all numbers same or very close and there’s no rhyme nor reason for how my glucose shoots up or nose dives.
Just trying to hang in until October when I get to see the endo!! My oncologist is actually trying to get me in earlier!
Hi @boothompson . I feel your frustration. Sometimes there is no rhymes or reason to the numbers and you have to chase them as best you can. But in the interest of exercising my creative juices and brainstorming the wackiest of ideas…
Have you looked into patterns associated with your cancer treatments? Maybe infusionsor other medications taken in Day1 have a different effects based on when they were given, and your insulin needs may be great or less on Day1 on Day 3 or 4, or whatever the case may be? If that turns out to be the case you could set up separate profiles for each day.
I’m glad to hear your oncologist is still trying to get you in and someone will be able to respond to his call for a professional favor. You have another appointment coming up soon don’t you?
Hi,
I just had a treatment appointment yesterday- I go every 3 weeks. My oncologist and I wondered the same thing - could the treatments be affecting my glucose numbers. I keep a super detailed journal- I’m kind of a freak about it Can’t see any kind of pattern there either.
All of this might not upset me so much if my diabetes “trainer” acted like she cared at all. Feels like she just blows off whatever I question. Or she “talks down” to me. At one appointment I told her I’m not stupid, I have a degree in social services and didn’t have to take college English or math - just one test for each. (I am in NO way saying someone without a degree isn’t smart!! Just trying to get her to understand that I can figure some things out without her talking to me like I’m a child!)
Anyway, I see her on Wednesday- ought to be interesting!! I’m keeping my fingers crossed that my oncologist can get me in to the endo sooner.
Thank you so much for your suggestions and concern!! I greatly appreciate it!!
