Calling All T1D Women: Please help our survey!

[Michel]

@Suitesis

T1D for 41 years

@Suitesis, one word. Wow. What a great post.

And welcome to the forum!

[T1Allison]

Thank you,@Suitesis! I really appreciate your help with our project, and I am inspired by your experience. Thanks for adding so much to our project! And welcome!!

[Suitesis]

Thank you.

[Suitesis]

Thank you. Thought it was a bit long, but T1Allison seemed to want more, not less.

[Suitesis]

How do we do that (PM)? (I found this board because I’m hoping to find a solution to using Dexcom, and the xDrip may be it, but I have to try to figure it out, and I am NOT good with technology!)

[Nickyghaleb]

I’m not good with technology either, but I’ve learned how to PM. I’ll get one to you.

And if you’re looking for technology-minded diabetics, you’ve found some. I’m not one, but I like to hang around and pretend. If it were up to me, I’d keep track of my blood sugar with paper and pencil and mail it to my doctor.

[T1Allison]

If JDRF has taught me anything, it’s that you are supposed to request things numerous times to give people plenty of reminders to donate or whatever else.

I’m working on the Women’s Wiki today. Anybody else out there who keeps meaning to contribute but keeps forgetting to? Your experience matters!

Plenty of time to message me. This is turning into a delightfully large project.

[Catiya]

• Number of years with diabetes - About 10 now, I think.
• MDI or pumper; CGM? Pump (omnipod) and CGM (dexcom)
• Diabetic during reproductive phase of life? perimenopause? menopause? - Reproductive and maaaaaaybe perimenopause now.
• Did you notice any insulin resistance or sensitivity due to hormonal changes? How did it impact your bg control? Your diet? How did you manage it (or not manage it)? - No, I haven’t noticed any changes.
• Do you use hormonal birth control? What kind? Do you - I no longer use hormonal birth control. I was on ortho for a long time and recently tried two new ones but the emotional side effects are just not worth it for me. haha. I am not a cryer and I do not like crying 15 times a day!

[T1Allison]

Thank you, @Catiya!

[T1Allison]

Also, anyone who wants to weigh in on pregnancy experiences, please feel free to message me or add them here. A few women have discussed their pregnancies, and I’ll add my experiences to my write-up, as well.

[Nickyghaleb]

Okay. I’m here. You can breathe now.

You know I have almost nothing to contribute here as, short of being a woman, I have not noticed anything else womanly about my diabetes. But you did call all women, and I am that, so I’ll do my best.

• Number of years with diabetes - 15.
• MDI or pumper; CGM? Pump and CGM—Strictly Medtronic up until recently.
• Diabetic during reproductive phase of life? Yes. Diagnosed as having gestational diabetes with my first pregnancy.
  perimenopause? Not quite there yet.
  menopause? Not quite there yet either.
• Did you notice any insulin resistance or sensitivity due to hormonal changes? Never have I noticed this prior to reading some of what you have been working on here. Even now I can’t say I notice anything, BUT I have recognized some times that I have very stubborn blood sugar. This is definitely not something I see on a monthly basis, but reading things in here have me trying to look for any possible patterns.
  How did it impact your bg control? When one’s bg control is as shabby as mine was for 13+ years, it’s impossible to determine the effect one thing was having on it. My blood sugar was very high nearly all of the time. Could’ve been the hormones. Could’ve been the donuts. We’ll never know. However, I did have an interesting thing happen that is very closely related, and that is that my terrible blood sugar control DID have an effect on my menstrual cycle. My doctors were mostly in agreement that my control was so bad that my body was too “sick” to have a normal cycle. Prior to developing diabetes, I did have a very consistent and predictable cycle, but about 3 or 4 years after developing it, my menstrual cycle all but disappeared. I also went through about 6 years where I couldn’t get pregnant. Again, general consensus was that my poor control, near lack of menstrual cycle, and inability to get pregnant were all related.
  Your diet? Terrible, terrible food. The only time I avoided that kind of diet was when I was pregnant, and I handled that by eating tofu, chicken, and eggs only.
  How did you manage it (or not manage it)? I just haven’t. Nothing to handle if you can’t find a problem (because you’re not testing).
• Do you use hormonal birth control? Nope.
  What kind? I used orthotricyclin??? For about 10 years but never went back on it after developing Melanoma. It’s contraindicated for some time following a diagnosis, and I just never returned for reevaluation.

Pregnancy:

I was pregnant when I was diagnosed with Gestational Diabetes. I was told my numbers were off the chart. I had a lot of pre-term difficulties with that pregnancy spending the last 3-4 months on complete bed rest and in and out of the hospital. My baby was 7 lbs 2 oz born a month early. My second pregnancy was very difficult. This wasn’t diabetes alone though as I had since developed Melanoma and had brain surgery for an unrelated condition. Between the three conditions, the pregnancy was a harrowing experience, and I made weekly-biweekly trips into the high risk doctor. Pre-term difficulties definitely defined this pregnancy, and a series of techniques were employed, including use of cerclage and various drugs. Even with everything in place, I still went into labor at 24 weeks but managed to keep until 27 weeks. My blood sugar during this pregnancy was excellent, and my pre-pregnancy a1c of 10.3 dropped to a 6.2 within the first 8 weeks or so. I was hungry, moody, and tired, but I did a good job getting myself through a hard pregnancy. Other things about this pregnancy were that I DID struggle with infection after my son was born, and that went on for a couple of months (same was true after my first pregnancy), and I DO remember almost a week after my son was born NOT NEEDING ALMOST ANY INSULIN AT ALL. Coolest thing in the world. Once he was born, everything collapsed. Diabetes included. And I was, essentially, a non-diabetic for almost a week. I also remember that breastfeeding, especially in the first few months, was a fantastic way to bring down my blood sugar. It was so effective that I couldn’t sit down to feed my son without making sure I had raisins or juice nearby. I had some very bad crashes before I realized that’s what was going on. The same was also true for my last son, also born a month early, also after cerclage and drugs and bed rest and multiple hospitalizations, as well as was the difficulty with infection. This pregnancy was a little scarier though in the diabetes department with their being some concern over his size and weight and then, in the end, with a bout of high blood sugar. I can’t remember what happened, but I had some sort of pump malfunction at around 33 weeks, and my blood sugar saw a sharp spike. This was in the third trimester, obviously, and I was already up against some driving blood sugar as it was. Just 24 hours later, my baby was no longer moving, so it was off to the high risk doc. I was sent over for an emergency c-section as it seems the high blood sugar had caused some problem with the … umbilical cord (I think). The great news is we caught it all in time, and he was delivered at 7 lbs 1 oz.

Insulin resistance during pregnancy?? Yes, please. Absolutely. Not in the first trimester, but I definitely saw a big of it in the second trimester as well as in the third… obviously.

I’ve gotten this far down and am falling asleep now. I think I’ve covered everything I wanted to so am going to try to split before I start writing weird things. Let me know if I missed questions—— because i’m sure I did!

[LJordan]

Hey Allison, you can thank Nicky for my visit today, and thank you Nicky for your words of wisdom regarding no calibration occurred!
T1D for 35 years, 670g currently, two kids first was MDI and the second was pump Medtronic 530 (perhaps?). Total different pregnancies as a result. Second was 6 weeks premature. NICU, but everyone complimented me on my great control (?) They said they could tell that I maintained good levels throughout my pregnancy.

Still experience slight raise in BGs two weeks prior to my period, seems better with the 670 (but it in no way solved all my diabetes frustrations like I had hoped). No signs of menopause yet. Last A1c was 6.4. I’m not sure what else to say, which is rare for me.

**Ok I didn’t read properly and will now modify my post

• Number of years with diabetes - 35

• MDI or pumper; CGM? Medtronic pump with CGM

• Diabetic during reproductive phase of life? Yes
  perimenopause (not yet) menopause (not yet)

• Did you notice any insulin resistance or sensitivity due to hormonal changes? Yes. I think it was worse as a teen, back then my A1c was supposed to be under 10 I believe, so can’t say if it was the hormone storm of teens of just really high BGs all the time? I did two injections (of pork insulin) per day back then, regular and NPH. I’m incredibly hungry when I’m PMSing, I feel like I can’t eat enough.

• Do you use hormonal birth control? Not anymore but I did, many different brands. Do you experience insulin resistance or sensitivity due to hormonal changes while using birth control? Can’t say for sure, control had gotten much tighter and I was told it caused a raise in levels but I can’t definitely say it did, especially after starting the pump.

[Nickyghaleb]

Hi, @LJordan! Thank you so much for taking the time to contribute! I also had a premature baby and did the whole NICU thing. My guy is big and loud and scary now.

Anyway, thank you again for coming over, and I’m glad you got your No Calibration Occurred sorted out.

[LJordan]

I did! I didn’t have to follow your instructions, I just started inserting my sensor in the back of my arm, so I believe it was a combo of low battery and pump location, that caused my error, but I have had sensors die prematurely and as they are expensive, I’m hoping your advice will help in the future. Plus, I found this FUD forum in the process, the name makes me laugh and also makes me feel part of a tribe! Win/win!

P.S. My premmie is now 10, not so small @ 5’3” and also loud & scary, so I feel ya!