From the Community: Egg Freezing and IVF with Type 1 Diabetes
One of my favorite things about this community is the way we come together to share experiences, support, and real-life wisdom. I often get questions about topics I haven’t personally navigated, but I know so many of you have—and that collective knowledge is invaluable. That’s why I’m starting this new series, where I take commonly asked questions and open them up to the community.
Today, we’re diving into a big one: IVF and egg freezing with type 1 diabetes. While I haven’t been through this myself, I know it’s something many of you are considering or have experienced. Below, I’m sharing responses from the community—real insights from people who’ve been there. My hope is that this series helps you feel less alone and more prepared for whatever decisions come your way.
If you’re interested in sharing your experience, you can fill out this form.
Just a reminder: The experiences shared here are personal and may not reflect what’s best for everyone or what happens for you. This post is for informational purposes only and should not be taken as medical advice. Always consult with your healthcare team to make the best decisions for your health.
“There’s a lot of pressure to be in “perfect” health I found going through IVF. Of course you want the best chances and optimal results, but adding to this the pressure for “good” or “perfect” sugars was hard. I put far too much pressure on myself to try and balance eating the “right” foods for me/baby as well as keeping sugars low very difficult. If I’m honest I developed bad practices of accepting and tolerating very low sugars out of fear of going high. Top tip- avoid micromanaging to the extreme, accept sugars may rise through stress but also potentially a change in eating habits and learn and adjust as you go or even better, a few months before any treatment and stop the hypos before they happen (rather than tolerating them- I lost symptoms during pregnancy). Be prepared to justify your sugars as it did feel as though any success would be down to me or my sugars- which is not necessarily true and adds additional stress which isn’t fair (and non diabetics aren’t asked to explain lifestyle type questions in the same way), so aim for good control prior to starting. I don’t know but suspect I wouldn’t have been supported through (free) treatment on the NHS (UK healthcare system) had my control been less than ideal.” - Anonymous
“High Level Overview: I went through Embryo Freezing (phase 1 of IVF) twice. The first time I did 12 days of stim meds, the second was 9 days. I am on MDI and use the dexcom G7 and maintain tight control on my sugars (5.6 - 5.7 A1C). I am normally very active so not being able to exercise was tough for me but I focused on lots of walking.
Impact on Blood Sugars: the first 2-3 days of stimulation meds my insulin sensitivity increased especially in the afternoon and evening. The rest of the days of stim meds my sensitivity stayed the same as it usually is, despite me not exercising as much as usual. After the retrieval procedure I experienced insulin resistance for 2 days and then AM spikes for about two weeks post retrieval. I combatted this by increasing my long acting insulin. Overall though, the process had less of an effect on my blood sugar than I though it would. I was surprised that the biggest effect was post retrieval, instead of while taking the stim meds. For the procedure itself, I requested the first procedure in the morning (which they will accommodate for type 1 diabetes- make sure to advocate for this!!) and made sure to have no insulin onboard. If you happen to be going low when you are NPO you are allowed to have apple juice since its an almost clear liquid, or ask the nurse and they will put some sugar in an IV drip. I also typed up a piece of paper that I gave to my anesthesiologist that explained my diabetes and how to access my dexcom readings on my phone. They allowed me to keep my phone with me during the procedure. Something worth noting is that while the procedure itself is about 15min, from the time I was put under to the time I felt conscious was about 1hr.
General tips:
-HYDRATE. I love LMNT electrolyte packs because they are low in sugar and really helped while taking stim meds. I took 2 a day- one after my morning injections and one after evening injections. They recommend you do this and I do think it really helps. -They also recommend you get on a stool softener regime because the process + the anesthesia from the procedure can really constipate you. My first round I used stool softer capsules and they didn't work well. My second round I would take 1 to 1.5 doses of miralax powder mixed in water each night and it worked MUCH better. Even if you don't feel constipated, I recommend doing this to be preventative.
-My overall symptoms were not horrible. It is very uncomfortable once you get to a certain point because you are large and bloated but I only felt nauseated 1 or 2 days and had slight headaches a few of the days. It goes by faster than you think!
-Be sure to rotate where you do your injections on your body. I actually kept track of where I did each injection (I divided up my stomach into 4 sections - upper right, lower right, upper left, lower left and would write down which section I injected into so that I kept track of how I was rotating.
-I found it very helpful to keep track of everything (medication schedule, symptoms, effects on blood sugar, etc) in a doc that I printed out. Here is a template that I made for some friends who also went through the process after me. You can make a copy and use! You can add rows and add your dosages, etc. The "location" piece is where I kept track of where on my stomach I injected: https://docs.google.com/document/d/1eNTdEGK-_Uyh54sh--mLKueiGqnmt3jl67DvDQnIqdk/edit?tab=t.0” - Mallorie M.
“I’m 2 weeks into taking three types of follicular stimulation injections. I take them night and day everyday. I’ve experienced a lot of bloating with these meds. I’ve had to move my pumps and cgm sites to arms and legs so I can inject ifv meds on the belly area. BG has been on the higher end (stress). My insulin needs have gone up a well. I’ve adjusted my pump settings with endo and it seems to be helping. I would recommend seeing endo more frequently and possibly adding diabetes educator to the team to keep settings tight.” - Yazmin F.
“For my egg retrieval, I surprisingly didn’t notice the medications/hormones having that big of an impact on my blood sugars. I communicated this as a concern to my doctor during our IVF consult and he shared that typically he doesn’t see T1Ds have issues with their blood sugars and I’m happy to report that was the case for me! I was super fatigued and uncomfortable the closer we got to retrieval, which impacted my activity level and my overall diet. Pre- and post-retrieval your doctor is going to be very strict with what type of activities are safe for you to do. This is definitely something to plan for blood sugar wise if you are a very active person! I went from working out daily and going on 3+mile walks with my dog, to absolutely zero activity for a few weeks. Going into my frozen embryo transfer I was required to be on birth control, I did notice my blood sugars ran a little bit higher during this time but it honestly wasn’t anymore challenging to navigate than usual blood sugar fluctuations within your cycle. Going through an egg retrieval is HARD - it will tax you both physically and emotionally. Lean on your support systems, allow yourself to slow down and do what feels good to your body, know that blood sugar fluctuates will happen, and give yourself grace! Communicate your questions and concerns with your fertility clinic and endo as they come up. When you get to your stims, inject them SLOWLY - a few of them burn. Get yourself a heating pad, it will be your best friend after retrieval and also for your PIO injections once you do your transfer. Push electrolytes and protein after retrieval to help prevent OHSS. Know that you are a total badass if you are going through IVF or deciding to freeze your eggs. You’ve got this! :)” -Anonymous
“A hurdle for me is that my IVF doctor wanted my A1C to be below 6.5 before starting IVF - so even though my time in range was good, I had to tighten things up even more to get down from a 6.6/6.7 average to a 6.4.
I didn’t really notice an impact on my blood sugars from the IVF meds until I got close to the retrieval (I.e. the trigger shot) - I just seemed to get a lot more insulin resistance between trigger shot and retrieval - and then also post retrieval when it was time for my first period (which was brutal and caused much more volatility than I would normally have with my numbers during my period).
I was also scared about managing my sugars during retrieval, but that went very smoothly - just make sure the nurses and docs know.” -Lisa K.
“I didn’t experience a ton of blood sugar issues from the injections, they were a little higher than usual due to stress and not being as active. The two things that I noticed affected my blood sugar the most was the birth control they often put you on during this process and when I was on anesthesia for the egg retrieval they had me put on activity mode and for about 48 hours following that (maybe due to being higher during the procedure, the anesthesia or pain) I really struggled to get my blood sugars back down” -Anonymous
