@T1Allison: that’s scary stuff, stroke type symptoms from migraines. I’ve had several similar episodes:. Slurred speech, loss of handwriting, aphasia, couldn’t remember my kid’s names, etc… Each resulted in a stroke workup in the hospital, each (thank God) resolved fully, very quickly. They called them TIAs, but later realized they are apparently a complex migraine. Thankfully, they have been several years in between. Before any of this occurred, (about 20 years ago), I started having occasional migraines with aura, though I didn’t know what they were. There appears to be some connection between migraine with aura and stroke, but I believe not fully resolved in studies at this point. It certainly has given me an appreciation for stroke victims.
As an alternative, have you heard about the various methods of NFP (Creighton method, Marquette method etc) ? Same or greater effectiveness as contraceptives, no side effects, low cost, etc. http://iusenfp.com is a website with some basic info.
I’m so sorry you’ve had those episodes! They are terrifying. I still carry a card in my wallet that says, “If I hand you this card, I’m having a complex migraine and need to go to the hospital. I’m a Type 1 Diabetic.” When communication is outside of my grasp, this might be the only thing that helps me. I hope I never have another one.
I checked the link you sent and do see the potential value in natural family planning for T1D women who are not candidates for or wish to avoid hormonal birth control.
For my situation, I’m most closely examining hormonal birth control as a method to dampen insulin resistance fluctuations throughout each cycle and trying to see which options are safest for T1D women considering our other health risk predispositions. I wonder at what point the improved blood sugar outcomes (and therefore improved health outcomes) w hormonal birth control tip the scales to outweigh the potential health risks by virtue of taking supplemental hormones. Lots of research to be done. Thanks for your input!
I think this is very valuable information @T1Allison. I’m glad you’re putting all of this together!
I want to make a quick comment about the value of birth control for it’s original purpose though. I think @mike_g’s link can be very useful for both D and non-D women who are not currently prepping for a family. The freedom that birth control (including the nfp methods) provides women is invaluable. While I certainly acknowledge that there are lots of reasons why it may not be healthy or wise to pursue/use hormonal birth control, I think it’s worth recognizing the amount of freedom this medical technology can give women that was inaccessible 60-70 years ago. For me, the effects of not using birth control would have a hugely traumatic impact, and this is why I use it. I don’t use it because of the hormone stabilization. I use it for it’s intended purpose.
Agree 1000% for a MULTITUDE of reasons. One of those myriad reasons includes the medical realities of an unplanned and unknown diabetic pregnancy.
One of the things driving me on this, in addition to wanting to put reputable information together for all of us, is that I would be much more likely to switch back to MDI (and away from podding) if I could stabilize my insulin resistance swings with hormonal birth control. If I was a candidate for Nuvaring, I would probably go that route (although third generation progestins still concern me). But I think MDI would be somewhat disastrous for me without birth control looking back on my prior experiences and I’m not willing to give up the near instantaneous basal adjustments on the pump in the meantime.
I also have my eye on perimenopause in the future and just can’t wrap my head around how the medical community seems to be giving us a dull pocket knife and an out-of-date map while watching us jump out of a plane into hostile territory. There appears to be no plan. That seems insufficient to me. Clearly.
“Fluctuations of Hyperglycemia and Insulin Sensitivity Are Linked to Menstrual Cycle Phases in Women With T1D” published in Journal of Diabetes Science and Technology, 2015, Vol. 9(6) 1192 - 1199
“Background: Factors influencing glycemic variability in type 1 diabetes (T1D) may play a significant role in the refinement of closed loop insulin administration. Phase of menstrual cycle is one such factor that has been inadequately investigated. We propose that unique individual patterns can be constructed and used as parameters of closed loop systems.”
“Conclusions: Women with T1D have glycemic variability changes that are specific to the individual and are linked to phase of cycle. An increased risk of hyperglycemia was observed during periovulation and early luteal phases compared to the early follicular phase; these changes appear to be associated with decreased insulin sensitivity during the luteal phase.”
This looks like it describes exactly what we’ve been discussing!! I’ll have to take a more in-depth look later today.
Also, I had to increase my basal rates as expected in my earlier post (but by 2 units this time- not sure why it was more). I was able to lower them late last week for a couple of days (once I started feeling better), but then I had to increase them again on Sunday/Monday. I’m curious to see if my insulin sensitivity increases in the next week, and I’m able to drop my dose back to the dose I started with at the beginning of this month. If so, then I think that truly demonstrates that my cycle influences my basal needs.
I’ve got a copy of the full article but I cannot find it anywhere online where I can link to it. Essentially, five T1D women completed this study in which they overnighted at the hospital once during the follicular phase and once during the luteal phase of their cycles. They ran a ton of blood tests and a fasting glucose test to assess insulin sensitivity at the different stages of the menstrual cycle. The small sample size of patients is limiting, but it was concluded that:
“Elevated blood glucose during the luteal phase may increase insulin-independent glucose disposal. Some individuals appear more responsive to menstrual cycle effects on insulin sensitivity. Women should be encouraged to use available self-monitoring technology to identify possible cyclical variations in blood glucose that might require clinician review and insulin dosage adjustments.”
I’ve got a copy of this article but no way to share it in full.
“This study shows a worrying communication gap between women with DM and their specialist care providers in relation to contraception. Rather than relying on GPs to provide contraceptive care, diabetes specialists should, with training, become confident to help women make informed contraceptive choices.”
I am also interested in this topic, as I am positive for the CHEK2 mutation (high risk for breast cancer) and have a strong history of breast cancer in the family, and my maternal grandmother died from ovarian cancer. Now I get checked by a breast doc and an ovary doc regularly. The ovary doc says I should be on birth control to help prevent cancer, so I have been for 3.5 years. The breast doc says that having babies and breastfeeding can help prevent breast cancer. It also looks like some people think birth control can contribute to a rise in breast cancer rates.
I’m not planning on having kids (but if it happens, it happens), so I am more than happy to be on my BC pills, which I take religiously. My periods are definitely better since being on the pill. But when I ask about a BC implant, for example, it doesn’t provide the protection for ovarian cancer. Seems too complicated, and then throw type 1 in the mix. Ugh!
Sorry I don’t have anything worthwhile to contribute, but I appreciate the work you have put in above!
I’m sorry for your family history, but good for you for being so on top of it.
Forgive me if you’ve already mentioned on the other BC thread, but do you mind mentioning which BC pill you are on? I’m curious about how much estrogen and how much progestin it has.
Thanks, it’s not so bad other than all of the appointments! Drives me nuts.
I haven’t seen another BC thread but will look for it. I’m on Junel. According to my Google search: 1 mg norethindrone acetate and 20 mcg ethinyl estradiol
"When analyzing individual subjects across 3 cycles, many subjects (9 out of 12) had a consistent change in at least 2 of the cycles whereas 3 out of 12 had different patterns across the cycle. This may be an explanation behind inconsistent findings across prior studies.
This study was limited in size with a small sampling of subjects with T1D who were well controlled on average (mean 6.8% with range of 5.4-7.8%). These results may therefore not be applicable in a larger more varied group with less well controlled glucose."
I think it’s interesting that the patterns were not consistent from month to month. My hopes may have been a bit too high.
It’s refreshing to see a study with people with well-controlled diabetes. It seems studies never include people with an A1c below 6.5%.
I’m glad they are doing research on this with participants who have similar control to ours. This is exactly what I struggle with so much. Yesterday I wsa high all day, then crashing low all night, lowered my basals thinking it was time, but now have been high all day today…
I hear ya. I’ll just be excited if we can get some heftier research attention so that we get bigger sample sizes from which to draw conclusions. What is truly known about female-affected diabetes is dark ages level of knowledge, IMO. If we at least knew that some women see consistent changes while some women might not…and what sort of proportions…that would be somewhere to start. One study I read mentioned that older studies which had concluded that cyclical female hormones had no statistically significant impact on insulin resistance were run back before insulin dosing and blood sugar tracking was as precise as it can be today. So those studies really may not be worth anything bc of the blunt tools of the day.
I’m working on some leads. I hope to get better care for all of us. The ripple effect has already started, but I want to make waves. It’s overdue, IMO.
Not to mention that it also depends on the participants. If participants have an average A1c of 8.2%, then there may actually be no statistically significant change. I didn’t notice the impact of hormones when my A1c was in the 8% range because I just ran high so often anyway. It wasn’t until I got my A1c down that I noticed there seemed to be some effect. And it wasn’t until I did a “blinded” week-long trial run of a CGM in 2009 that I saw that I actually went from 70-95% of readings in range and then the very next two days only 23% and 32% of readings were in range, with NO change in food or anything. Even my diabetes educator did a double take.
Since starting on the Dexcom in 2015, I’ve really begun to be able to respond to changes, but in the three years since then, even with tracking my cycle and blood sugars, I still have not come up with any reliable way of knowing when I should make changes nor the degree to which I should change settings. I feel like I’m playing a guessing game for most of the month, except week two when my blood sugar is rock steady and totally predictable and controlling it is a breeze. If men have diabetes that is like week two all (or most of) the time, then I also think that’s a major factor as to why women may have overall worse diabetes control and outcomes than men. And if that’s the case, women really should be offered much more support in figuring out how to respond to these hormonal fluctuations that affect them for most of their lives.
i switched out the nuvaring Tuesday night, and I’ve had no signs indicating a need for a basal decrease.
I’m finding the whole thing frustrating. I’m beginning to think the hormones were completely irrelevant and I should’ve been tracking different patterns (e.g. exercise, hydration, temperature). I don’t know. All I know is that I now need 2 units more than I did 30 days ago, and I increased my basal dose a couple of months ago as well. Maybe I’m developing insulin resistance… Though I don’t seem to need any more insulin at meals!!! So ugh.
I suppose the good news is that my average and standard deviation are spectacular. I’m happy with my time in range overall too besides a couple of bad lows on the walk home from work in the afternoon. So at least my control isn’t suffering despite my higher basal needs.
Though I don’t seem to need any more insulin at meals!!! So ugh.