FUDiabetes

Calling All T1D Women: Please help our survey!


#1

T1D FUD Women,

I am working on compiling what women have to say about their experience with Type 1 Diabetes. I want to compile a Wiki based on the many female experiences we have here on FUD. How did being female impact your blood sugar control during reproductive years? during perimenopause? during menopause? Or did it not impact it at all?

I plan to keep each person’s contribution anonymous in the Wiki article. Please feel free to post your experience on this thread or to message me directly, if you prefer. Say as MUCH or as little as you want! Everything is important! And the more we compare our experiences, the better our long term outcomes will be IMO.

If you want some guidance to get you started, here are some ideas to address:

  • Number of years with diabetes
  • MDI or pumper; CGM?
  • Diabetic during reproductive phase of life? perimenopause? menopause?
  • 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)?
  • Do you use hormonal birth control? What kind? Do you experience insulin resistance or sensitivity due to hormonal changes while using birth control?

THANK YOU IN ADVANCE!!

(Note: For women who have already messaged me privately on this topic, I still have your info and will include it anonymously. Thanks!)


#2

#3

@T1Allison hi there! I’m new to this site - and would love to help your project.


#4

Awesome! More voices is better!!

Please feel free to post on this thread or message me privately, if you prefer. Any questions, let me know!!


#5

@FatCatAnna, welcome!! Feel free to introduce yourself on the welcome thread!


#6

I’m coming around to do this. I promise you have my very unremarkable answers coming soon. Hopefully this weekend.

I’ll also post again in the Honest Exchange— see if anyone will jump in…


#7

Almost EVERY SINGLE WOMAN has prefaced their contribution with, “I don’t have much helpful information but here is what I’ve seen…”

ALL of it is useful!!! Anyone who reads this, you have more to contribute than you realize! And I can help you figure out what that might be if you want to chat! Message me!!


#8

A BIG Thank You to all of the women who have messaged me so far!

I’m still compiling and will wait to put out Wiki posts in the hopes I receive a few more responses.

Is there anyone with experience navigating T1D during perimenopause? We have one representative so far.

Thanks!


#9

@Nickyghaleb - curious - where would I find the “Honest Exchange” that you reference in the thread above. @T1Allison - I have blogged about going through menopause (like being a teen again - but allowed to drink red :wine_glass: wine and gorge on good dark chocolate while crying like crazed lunatic at times - which causes the wine to dilute abit … zut alors … :wink: )


#10

That might be a link. :grin:

If it’s not, let me know, and I’ll try again!


#11

Would you be willing to add your experience to our survey? Sounds very helpful!!


#12

Yes ! Where would I find the survey @T1Allison ?


#13

If you’re comfortable with it, please message me privately (or you can post here publicly, either way is fine) about your experiences with womanhood and T1D. I’m collecting narratives to compile anonymously into some Wiki posts for FUD to help women out.

Here are some guidance questions but feel free to comment on anything you’d like to share!


#14

What if you’ve sort of noticed issues but don’t bother tracking them too well because your (probably soon to be ex) doctor won’t let you treat them how you want to so you just pretend they don’t exist most of the time? :blush:


#15

Also USEFUL! :slight_smile:
And good luck! I hate having to navigate situations with one hand tied behind my back. I’m currently in the thick of one of those situations…but school related, not D related.


#16

I’ll type something up for you later today. :slightly_smiling_face:


#17

Hi - I think I am falling into the peri menopausal phase and would be happy to share my experiences. I most definety 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 coarse helps avoid the yo-yo effect.
Pumper with CGM is the only way I could possibly survive the flux of human drug store my body generates.
Pretty generic response, I am sure! - hope it is helpful!


#18

It’s perfect!! Thank you so much!!


#19

T1D for 41 years
MDI for first 38 years, pump (t:slim) the past three; CGM (Dexcom) for the past three, as well
Diabetic all through reproductive phase of life; have not yet reached perimenopause or menopause
(Will come back to the insulin need changes)

I’m not sure if you want this information, so do with it what you will: I’m not the mothering type, but did mess up and got pregnant in my 20’s (I am now blessed with a wonderful daughter and the best grandson in the world; somehow, she made it and became a terrific mother in spite of me). I was not in control of my diabetes when I got pregnant, but no idea how badly out of control I was. Though, afterwards, I had gotten to the point of “achieving” a 9-point-something A1c, so that is pretty telling. No internet back then - just read a lot of parenting magazines. Of course, none of those discussed being a diabetic mother. Doctors just said that, if I were to see this through, I would have a very large (10 pound) baby, but she was only 6 lb 4 oz when she was born. She was, however, sick and had to stay in the NICU for ten days before we could bring her home. She overcame all that, for the most part, and is doing well.

After the pregnancy, I started to realize the consequences of not taking care of my diabetes. Suffered near blindness in one eye, then amputation of a toe (just a toe, thankfully!), trouble with my tendons (trigger finger in several joints, and frozen shoulder in both shoulders). Though not likely linked to hormonal issues, it is probably worth mentioning that I also had a very minor stroke in my 40’s (which I’ll come back to in a bit), diagnosed with charcot foot, and now my kidneys are probably starting to fail.

As to how hormonal changes affect me: I am a mess EITHER pre-, during, or at the end of my menstrual cycle. The cycle always changes. I may need to cut my insulin down 2/3 before and during my cycle and then increase it 4x at the end. It may be opposite that, or anything in-between. I may have heavy bleeding, may be light. May have debilitating cramps, or none at all. I’m lucky in that the hormones don’t have a strong affect on my moods, but the one given during my cycle is when I become insulin resistant to the point where nothing is working (exercise, diet, insulin dosage - including stacking my insulin), I get terribly irritable. I hate that; irritability is worse than the most intense pain, to me. So I try to correct with insulin and increase my basal rate to an extreme level - which eventually catches up, of course, and I find myself in trouble.

No sign of menopause yet, but - despite all the negative side effects with it - I am ready for it to start now. Because of the stroke I had, no doctor will prescribe birth control. I think I should be allowed to consider that option; I don’t believe my chances of having another stroke are that great. I was under really high stress at that time - something that is really rare for me. And, when the time comes that I might be subjected to that type of stress again, I know I can handle it better.

Of course, diabetes and reproductive hormones are part of the endocrine system; so is the thyroid and pituitary gland. The hormones (or the limited release of them) also play a huge part in my diabetes. If my TSH is low (I take medication, but have to have it increased every few years), my sugars drop to dangerous levels (inexplicably, until I finally figured this out). My hypothalamus is a little wonky, too, but this hasn’t caused me much in the way of issues - at least, not yet. Since these are are all hormone related, too, I thought they would be worth mentioning.


#20

Wow, @Suitesis… welcome! :hugs:

I just read your story, and it seems you’re a warrior. I know this is the hormone thread (and I’m coming back to contribute, @T1Allison!!), but I read your piece about “tendon problems”, and I’m very curious. I won’t dilute this thread, but maybe I can PM you and ask about it? I have a few ongoing issues that I’ve yet to find answers to, hand pain and trigger digit included, and I’m curious what you’ve found along your journey.

I’ve also had a NICU baby— 2.5 months— following a diabetic pregnancy. Mine is also doing really well and has mastered the art of backtalk and work-avoidance at a level only the most accomplished at his age have reached. He and his brothers. I blame diabetes :grin:

T1Allison, I’m going to get my iPad and tell my tale. I didn’t think I had anything to say, but now I remember— It’s all coming back. :grin: