Women’s Health Wiki: How Has Your T1D Been Impacted By Different Female Life Stages?
The following narratives have been collected from FUD women explaining how the different biological stages of their lives has impacted their diabetes and their self-care.
REPRODUCTIVE YEARS
“ I have been T1D for 20 years and am now in my reproductive years. I use pump + CGM.
From ages 16-20 I was on Ortho Tricyclin Lo birth control pills, and from age 20 to now I have had a Nexplanon arm implant. I personally have not gotten my period for the majority of the time I have had the implant, so I would have a difficult time correlating changes in insulin resistance to my menstrual cycle; the last time I had even slight spotting was in December. I can say that in comparison to my time on traditional birth control pills, my insulin needs are much more linear now than they were before. I will occasionally have about a week or two of increased insulin needs, randomly, and then it eventually mellows out back to where I was before. Interestingly, the difference tends to be in my ratios rather than my basal needs most of the time these days, where basals might get a slight tweak but my insulin:carb ratio will range from 1:10 to 1:14, and my ISF from 1:50 to 1:60.
When I was on the pill, I would have noticeable changes in insulin resistance/higher basal needs in the few days before and the first few days of my period. This would be combined with a noteworthy increase in hunger and food cravings, making the insulin resistance thing more of a problem. I never really worked out a totally successful way to manage this issue, and would end up just running higher during this time of the month. When I first got Nexplanon, and stopped taking the pill, I noticed decreased insulin resistance, and my total daily dose went from like 60 units of Humalog to 40-45ish.”
~~
“I’m 37, diagnosed at 36. I’ve not had kids, and am not planning any. Diagnosed long after puberty, and am too young for menopause!
I’m on the Nexplanon implant for birth control. I’ve been happy with it from a birth control standpoint, and realized after diagnosis from reading your women’s health/diabetes threads that I think it’s been pretty beneficial for me from a T1D standpoint as well. Since it’s a steady hormone release, it doesn’t have the week off, so to speak, like pills would, so it seems to keep things on a pretty even plane for me. It has stopped my periods entirely. As a result of all this, I suppose, I’ve not noticed any trends in BG management related to a hormonal cycle. (I do wonder about the possible health consequences of hormonal birth control, but it’s one of those things I felt I had to decide to just go with and not fret over at this point).
I believe I’m in still a bit of a “honeymoon” period as I think my pancreas is still smoothing things out a bit for me. I suppose it’s possible that as time goes by, and it gets more complicated for me, that any hormonal changes may become more noticeable.”
~~
“ 23 years with D. MDI with cgm (Tresiba, Afrezza, Humalog). Diagnosed at age 8, currently 31. I naturally adjusted my basal rates as needed based on trends at night, but I didn’t realize that hormones might be contributing or that I should be watching for a monthly pattern until I read the experiences of other women with T1D. Once I realized I should be tracking this, I found the following basal pattern:
1st week immediately following my period: grading down from 27 or 28 units to 26 units/day
2nd week: 26 units/day. Least insulin resistance in this week at meals. Noticeably easier overall diabetes management. Consistently lowest average bg and standard deviation of the month.
3rd week: 26 units with a slow grade to 27 or 28 by the end of the week.
4th week/period: 27 or 28 units/day
Most of the time, I would peak at 28 units/day, but sometimes that was a little too much and I’d stick to 27 units through the end of my cycle. This was while I was on the NuvaRing. I’ve recently gone off the NuvaRing. My basal needs have changed, but I’m still in the process of finding monthly patterns.”
~~
“I’ve had T1D for 5 years. The pump did not work for me, but MDI with Humalog and Lantus (now Admelog and Basaglar) has worked just fine for me for 5 years and so far, I’ve not experienced too much difficulty with being a woman and a diabetic. I have had pre-existing period issues before my diabetes that were only slightly changed after my diagnosis and treatment. I only find slight changes with my blood sugar during my period such as having high blood sugar the night before and being lower through the entire period. So far I’ve only had male doctors since I’ve been diagnosed with diabetes though and it’s been somewhat interesting, but I’d say my endocrinologist was very respectful and paid attention even if he didn’t feel comfortable with advising me on anything for my period (outside of blood sugar control).”
~~
“I’ve had diabetes (LADA) for 2.5 years. I’m currently on MDI, though I also use Afrezza. I use a Libre as my CGM. I was diagnosed 4 months before I became pregnant with my second child, and unfortunately wasn’t clear on the diagnosis until partway through the pregnancy, so I don’t know what my blood sugar was doing prior to about 20 weeks when I started monitoring it. Once I did, I cut all simple/sugary carbs to try to minimize spikes until I could get access to insulin. I started basal insulin at 27 weeks (Levemir, 12u/day). I added bolus (Novolog) within a week, and stayed at a 1:5-1:6 ICR for the rest of my pregnancy. I still restricted my carb intake pretty heavily because of my ICR, staying around 100-150g carbs/day, and I chose more complex carbs and less simple/sugary carbs. I did notice a slight drop in insulin needs around 36 weeks along (went into labor at 38.5 weeks), but I didn’t even really have to change my ratios; my postprandial rises were just more flat.
After pregnancy, my insulin needs dropped to almost nothing - dosed only for sweets - for about 4 weeks, and then gradually my numbers started inching up again. I began mealtime insulin again, and was at a 1:25-1:30 ICR. That stayed pretty steady until my cycles returned, which is when things really started changing.
I began waking to higher fasting levels (100-120 where before it was 70-90) for 3 weeks of my cycle, from ovulation through the end of my period. That continued for several months, and then I did a round of progesterone pills because we discovered my hormones were basically near a pre-menopausal level (and I’m not even 30).
I started basal insulin, and that helped bring my fasting levels back to 90-100 and also blunted my post prandial spikes. I also noticed “the drop” more than I have before as I neared the end of my cycle.”
~~
“I’ve been diabetic for 35 years. I am still technically in my child bearing years although I’m getting a bit long in the tooth. When I was younger I noticed much more dramatic fluctuations from hormonal changes than I do now. I’m not sure if it’s age (43) or insulin pump therapy. Control is much tighter now than when I was a teen. I still notice a small rise in my blood sugars when I PMS (for me it’s two weeks prior to starting a period).
My first pregnancy was insane, I looked for a Dr. that specialized in diabetes and pregnancy and actually found one. She was from hell, a horrible, horrible woman. So I went to my regular GYN and he shared with me that he had a nurse that used to work with a Dr. that specialized in T1D and pregnancy. He was confident together we could have a successful pregnancy. I found ONE book at the time on the subject but it was basically about gestational diabetes. My first pregnancy they were extremely cautious, overly so, but my son was healthy and I was well throughout. He was born at 38 weeks, he was transverse so we opted for a c-section, which alleviated my worries about controlling blood sugar levels during delivery and risking a NICU baby. Back then health care was reasonable and wasn’t nearly as costly as it is now. I saw the Dr. once a week for the first two trimesters and twice a week in the third. I faxed (I said it was a while ago) bgs to the nurse daily. Tested my sugars fasting, pre & post meals and at bedtime. The pump was available but not suggested by any of my doctors during pregnancy. I used MDI and my insulin requirements increased so much I nearly exceeded my ‘normal’ 1/2 cc syringe so would need two injections each time or a bigger syringe. Thankfully that didn’t happen. I gained 60 lbs with him. I did get really sick once I was released from the hospital, I couldn’t eat for a month. It was frustrating because no one knew why and I didn’t have the energy to care for a newborn. Ultimately they decided it was a combo of diabetes and c-section - since our digestive track is slower and c-sections shock the intestines. They surmised my stomach acid was backing up and making me sick.
My second pregnancy was 8 years later but with a pump! They no longer considered me ‘high-risk’ and took a much more laid back approach. Appointments were basically the same as a non-diabetic. I live in a smaller town now and endos are really hard to come by, so I was pretty much managing my own with some help from my primary care doctor. I gained less than 20 lbs with this pregnancy and only had to increase my insulin a bit in the last trimester. My youngest came 6 weeks early with no explanation. They attempted to give me steroids to mature his lungs when my water broke. The steroids shot my blood sugar into dangerous zones and I went DKA for the first time in my life. My OBGYN was out-of-town and the on-call asked who managed my diabetes, I responded that I did. She said that the steroid would increase my blood sugars and I said I can compensate with insulin, but I need a ratio to do so. It was a challenge to find said ratio. The high glucose levels stopped my labor, but my water had broke 12 hours prior and they were worried about infection, my baby was also stressed from lack of amniotic fluid. It was a tense few hours and she came back with a syringe of an insane amount of insulin (like 30 units I think) she found a T1D nurse and he suggested the ratio. I told her she better have glucose ready (I couldn’t eat because he was going to be c-section) I was convinced she was going to kill me. She didn’t (yay!) and it brought my sugars down to normal. Someday I will learn to trust them. They gave me a second dose of steroid 12 hours later (this time we were able to compensate better with insulin). We waited another couple hours and then proceeded with the delivery. He was a healthy 5 lbs 9 oz and no issues with his blood sugar. He did go on oxygen after a day or so. He spent 2 weeks in the NICU.
I think pump therapy helps quite a bit with the hormonal changes. I’m now on a 670g which is marketed as an “artificial pancreas”, I haven’t personally found this to be true, I still have to “compensate” on my own some. It does help though with some of the fluctuations I think. I’m not sure yet how different it will be throughout pre-menopause and menopause.
Diabetes is something we can live with - obviously - but it does make every single thing a tiny bit harder. Being a woman with diabetes is even more difficult and to prove my point: My current PA/CDE (who is male and a T1D for 50 years) eye rolled at my last appointment when I mentioned hormonal shifts and blood sugars, so the struggle is real ladies.”
~~
“ T1D 13 years. MDI for 8 years. Pumper for 5 years. Use CGM. In my reproductive years still today.
While on hormonal birth control (Nuvaring), I did notice increasing insulin resistance as each cycle progressed. My Lantus dose would stair step up from 11-13 units each cycle. While on MDI without birth control, my Lantus dose would stair step up from 11-15 units each cycle. The hormonal birth control appeared to moderate my insulin resistance caused by hormones, but due to the complex migraines it caused me I can no longer use it.
Now with pumping (and no hormonal birth control), I use temporary basal rates ranging from -10% to +30% as the main way to manage insulin resistance and sensitivity changes that occur throughout each cycle. And each cycle is different, needing different adjustments. These basal rate fluctuations impact about 2.5 weeks of each of my cycles. I typically see spikes in resistance during the days leading up to and including ovulation, as well as during the increasing hormones through the second half of my cycle after ovulation.
I tend to experience ‘the drop’ in insulin resistance anywhere from a few days prior to my period to 12 hours after my period starts. I have to be ready for it because switching from running extra basal to needing less basal (plus considering any bolus insulin in my system for foods or corrections) can make for VERY scary drops and persistent lows. I keep my meals and snacks even more standardized than normal (and they’re usually pretty darn standardized) during this transition time so that I can identify the fluctuations as quickly and safely as possible. I’ve learned that the hard way…having to enlist neighbors to come sit with me as I was trying to drink my way out of an unending low one time due to ‘the drop’.
I have had two successful pregnancies. Both were done using MDI, and only one was done with CGM. My insulin resistance occurred as predicted in all of the diabetic pregnancy books out there. And the reduction in insulin needs at the end of pregnancy is very real. That happened for me before I even knew I was in labor with baby boy #2. I had to chug juice and Sprite all day long (due to my Lantus dose being completely mismatched now based on pregnancy hormone changes) before I even realized I was in labor. I also had to be really, really, really firm with the Labor and Delivery department at the hospital that if they were going to take my Sprite away from me, they’d better start a Dextrose drip ASAP. “We’re sorry, we’re not allowed to start an IV until all of your paperwork is completed.” Me, at 9cm, informed them, “If you don’t start this Dextrose drip NOW, you’re going to have a whole lot more paperwork to complete to explain why I’m dead.” Then the OB/GYN came in, I told her what I needed, and she overruled everyone and got me my Dextrose drip.
Advocate for yourselves, ladies!! In all things female and diabetes!!”
~~
“ About 10 years now as a T1D, I think. Pump (omnipod) and CGM (dexcom). In my reproductive years and maaaaaaybe perimenopause now. I haven’t noticed any BG changes due to hormones. 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. I am not a cryer and I do not like crying 15 times a day!”
PERIMENOPAUSE/MENOPAUSE
“ I’m T1D and am currently experiencing perminopause.
I can no longer predict, based on BG values, what is happening, is going to happen, or has happened. It’s all…over…the place. During a 6-month period-free place, my BG’s were the most stable they’be been. Huge indication to me of other hormonal involvement (than during those times I was experiencing more regular hormonal pushes).
Last week I spent a few nights awake due to night sweats and general inability to sleep, as well as some emotional/mood swings.
That being shared, BG’S were crazy. Running 240-330.”
~~
“I’m T1D and I think I am falling into the perimenopausal phase. I most definitely find patterns of resistance and sensitivity that coincide with hormones. To the point of using different basal rates according to the estrogen/progesterone/testosterone levels-but that seems to be lessening as I am beginning to have less estrogen.
Diet - cravings are less so and that of course helps avoid the yo-yo effect.
Pumper with CGM is the only way I could possibly survive the flux of the human drugstore my body generates.”
~~
“I’m T1D and currently post-menopausal.
There is so much to say about my journey with D and hormonal fluctuations as they relate to my control and management of my BGs. During my reproductive years, I was on MDI, using Beef or Pork R insulin as well as NPH and Lente. There was no talk about ICR or Basals. Everything was guesswork. I even avoided carbs so that I didn’t need much bolus insulin.
But, most importantly to me, my greatest challenge was during peri-menopause and menopause. My BGs were up and down and all around. Management seemed unobtainable. My OBGYN put me on a low dose of birth control, but this just aggravated the problem.
I was just trying to get by one day at a time. I don’t know what was worse, the crazy BGs or the terrible sweats; I saturated everything. (And my poor poor husband was woken up in the middle of every night because I needed to change the sopping wet sheets.)
It was at that time that I tossed the syringes and went on my first pump. This was a gift from God. It was a life changer.
But the best news is that one day I began to feel better. Menopause had passed, and my BGs stabilized (and no more unbearable sweats).
I am 55 years old now, and I have been on the pump for about 20 years. I have been T1D for the past 30+ years. I recommend going on it to any woman going through hormonal changes. My pump (MiniMed Medtronic) has different setting profiles which can be changed with a simple press of one button. You can change your basal needs whenever needed. Currently I use these for my swimming/exercise days and nights. In hindsight, I wish I had gone on the pump sooner and was able to change my basal needs with that press of one button.
I hope that this helps someone. Just remember, that however awful it is while you are suffering through this period in your life, THIS TOO SHALL PASS. Just hang in there.”
POST-MENOPAUSE
“ I was diagnosed after menopause, for which I am grateful. Pretty consistent [basal needs] except for illness or stress.”
~~
“ I know hormonal changes had a pretty significant effect on my BG…I had children WAAAAYYY back in the 70’s and didn’t even have blood testing at the time and definitely wasn’t on the pump. And then I had a total hysterectomy at 45 in 1997. I do know that post hysterectomy I didn’t have the monthly swings (only the everyday swings lol).”
~~
“Diagnosed Feb 2017 early 1.5/LADA. Age at Dx 61, about 10 yrs into menopause. No insulin yet, but CGM because very insulin sensitive with reactive hypoglycemia. Can’t tell anything about hormones since well into menopause. Just know that I get huge spikes with anxiety/work and exercise."
End of wiki ---------- comments start here
