Looking for honest advice; pre conception type1

[LunaLG]

Hello,

I have recently been diagnosed as type1 (7months ago) at the age of 33. My husband and I had been thinking about starting a family, but my diagnosis has given me other priorities recently!

I am coping relatively well with everything, I definitely have the odd sad/angry day, but my control has been good and my HbA1c is now 42 (it was 115 when I was diagnosed ).

I attended a ‘pre conception’ appointment at my hospital and I’ve come away feeling pretty disappointed with the conversation. What I’m trying to work out is the answers to the big questions like ‘what are the risks associated with a diabetic pregnancy? Could it cause complications for me? What about risks to a baby?’ The fact that I’m still getting used to living with type1 has me questioning whether this is the right time to think about conceiving and the extra stress that will add to managing my diabetes. I feel like I need honest answers from my healthcare team, but all I got was ‘your hba1c means you’re good to go, here’s a folic acid prescription!’

I was told there’s no more risk than in a usual pregnancy, which sounds unlikely based on my own research, so I asked the question ‘if there’s no more risk, why do my sugars have to be even more tightly controlled? That implies that the control I have now would equal some risk?’

I imagine the DSN was trying not to worry me and to be positive, but what I actually need is the information to help me decide whether this is the right thing to be considering right now on top of a fairly new diagnosis.

If anyone has been in a similar position or has any insights that could be helpful, I would really appreciate it! This is a huge (and potentially very exciting) decision to make, and I feel a little bit alone with it as I don’t know any other type1s!

 

[trophywench]

Well the things you have to prepare your brain and body for are that in the 3 semesters of pregnancy the mix of hormonal and other bodily function changes which occur naturally have totally different effects on your BG - some it naturally becomes mega high and sometimes the absolute opposite being mega low so you really need to have the resources yourself immediately to adjust your basal and bolus insulins rather than waiting for someone else to tell you what to do - and also not panic if/when that didn't work but apply logic to what/why and then do whatever's needed instead. It's also become generally accepted that hardly any diabetic pregnancies go full term as there are greater risks for the placenta failing late on so it's probably better generally to give birth in a hospital where there are plenty of medical staff at all hours rather than at solely midwife led facilities who don't have on call anaesthetists, surgeons and special care baby units (ICU for prem babies) immediately available should you or the baby need any of them. Ours is a university hospital which does normally have all these things as well as specialist Drs and midwives manning the out patient clinics where all the extra scans that pregnant ladies with D automatically get along the way are arranged.

 

[EmmaL76]

Can I just say, I’ve been hit with every complication known to man with my four pregnancies. Some things no amount of preparation can prepare you for if that makes sense. You care about your own health and I just know you would care even more for your babies health. So if you feel ready then go for it . You can do this and will have all support on here you could ever need. Xx

 

[LunaLG]

Thank you both for the info and reassurance. I had no idea about diabetic pregnancies rarely being full term until this post, I’ve tried to steer away from doing lots of my own research before speaking to a DSN, but seeing as that conversation was so disappointing it looks like it’s time to learn as much as I can for myself!

 

[pawprint91]

Hey @StephanieMLW , I can't help here but I'm wondering if maybe @Inka can?

 

[Inka]

Thank you both for the info and reassurance. I had no idea about diabetic pregnancies rarely being full term until this post, I’ve tried to steer away from doing lots of my own research before speaking to a DSN, but seeing as that conversation was so disappointing it looks like it’s time to learn as much as I can for myself!

@StephanieMLW I’ve had 3 pregnancies with Type 1. They all varied. I don’t think they were harder than any non-diabetic pregnancy really. The truth is that even if you’re not diabetic, you worry. The Type 1 makes it harder work because you have to keep tight control, so monitor, correct, change basal, adjust meal ratios, but now the Libre and CGMs make that much easier. I didn’t have those for any of my pregnancies but if I had they would have helped a lot.

So, I’d say you need to be confident in what you’re doing with regard to adjusting basal and bolus, and confident in treating hypos and giving correction doses.

I can understand your nervousness having only been diagnosed a short time, but, on the other hand, that has advantages too. Your honeymoon period might still be ongoing, you’re in good health with no complications, etc. You have to take the folic acid for at least 3 months before you conceive, so, assuming it then takes you a few months to get pregnant, you could easily be heading for 16 months of having Type 1 before you conceive. And - thinking realistically - what if you needed assistance with conceiving? Personally, as long as you’re confident with the insulin adjusting and have a good knowledge of that, I wouldn’t delay if you feel ready.

Diabetic pregnancies do have a slightly increased risk to the baby, but this risk has reduced drastically in the past decades. It’s also lower for women who have good control, like you. When you’re pregnant you’ll have excellent care and extra scans. This is fantastic as everything can be checked and kept an eye on. It really is reassuring. One of my pregnancies was high risk (for other reasons, not the Type 1) yet it was a good, relatively easy pregnancy.

Ask anything you want. Concerns are natural - for every woman, diabetic or not.

 

[rebrascora]

Hi Stephanie. I can't offer personal experience of pregnancy with or without Type 1 but the thing that occurred to me was that you are perhaps lacking a little confidence in managing your diabetes (even if you are doing fantastic with that HbA1c) As has been mentioned, being confident to adjust your basal doses when needed will be more important during pregnancy so I wonder if a DAFNE course or whatever your local equivalent is, might boost your confidence a bit more. It certainly did for me. It can also be "a foot in the door" for getting a pump and I am guessing that might make managing your levels through pregnancy a little easier, so if you haven't yet done DAFNE, I would ask to be fast tracked onto one.

Oh.... and wishing you lots of luck with your new and exciting journey.... if you decide to take it on.

 

[helli]

now the Libre and CGMs make that much easier.

I think this is really important.
Just like when we Google "Type 1 life expectancy" we get scary predictions based upon historic data from the days when home testing and insulin pens were a twinkle in a scientist's eye, predictions for child-birth with Type 1 is based on historic data from a similar time (or at least pre-CGMs) when diabetes management was more "diabetes guesswork."

Good luck with your future, @StephanieMLW

 

[LunaLG]

Thanks everyone for your responses. This is so helpful, and makes me feel a lot less alone! @Inka I was actually hypothesising that the fact I'm probably still honeymooning and thankfully have no complications could mean that actually this is a better time than ever considering my circumstances. Great to hear your have had three successful pregnancies without any of the tech - wow I can only imagine the work you had to do without CGMs etc 🙂

@rebrascora I have actually just started DAFNE last week! Second session on Friday. Really glad to be finally doing the course - I feel pretty confident managing things day to day, but I also know there is a lot still to learn and that my hypo treatments and correction doses etc are all based on my own research as opposed to working with a course leader, so I may be doing some things wrongly. You're right though that a lot of my fear at the moment is confidence; I'm hoping DAFNE will affirm that I'm doing things right and redirect me to better practices for the things I can do better.

I did actually mention a pump at my pre conception appointment, and they have said it's a possibility but that I don't need one because my control is good/I'm honeymooning. I did make the point to the nurse however that there's an awful lot of work I put in to get those numbers, and the mental fatigue is kicking in. Pregnancy on top of that feels a bit scary and a big mental load! I've been told one of my DAFNE course leaders is a pump specialist so hoping to chat with her more about it.

Great to know there is a supportive space to come to if (hopefully 'when') I start down the path of having my own family 🙂

 

[LisaP2023]

Hi @StephanieMLW
I am knew to this forum but came across your post as I feel like I am in a very similar situation..
I am 34, diagnosed T1 in August 2023 so 9 months ago so very much still in early days. I was also so very worried about pregnancy complications after having a my first baby 3 years ago and was worried that my chances of having another was taken away from me due to T1. We had a lot of trouble conceiving with me first (took 3 years) so I was keen to get started ASAP. Back in October I got my doctor to do some check ups on my fertility, blood test and internal scans and there were no issues at that time so he advised to start trying incase there are issues.
I discussed this all with my diabetic nurse who also recommended a few tests be done relating to thyroid, first test was borderline and then waited another month or 2 and results came back clear so we were ok so she gave us the ok to start trying although I needed to reduce my meal spikes abit so we tried even quicker QA called fiasp which seems to help.
My levels have been ok, last blood was 54 I think but my predicted IAC ok libre is like 50 currently. I do have good and bad days.
Your levels are great and sounds like you are doing amazing, my advice is to you from someone in a similar boat is to start on folic acid and just go for it and try not to worry as all pregnancies have there problems and you will be closely monitored.
Also as soon as you are pregnant I believe you are entitled to dexcom on prescription which I hear is ALOT better than libre x

 

[Charliem035]

Hi Stephanie,

Just hoping to offer you a little reassurance. Like you, I'm in my early 30s and well controlled, but am also currently 36 weeks pregnant and booked in for an induction next week. In my experience, the advice you'll get won't be specifically tailored to you, but more in general relating to pregnancy with diabetes. Truth is, if you're well controlled, the risks are barely different to that of a non-diabetic mother - especially if you're fit and active. They may also say things which sound pretty scary, but definitely take it with a pinch of salt - I was told I'd be unable to work past 34 weeks (I'll finish on Friday at 36+6), that I would absolutely need to use the Dexcom (I know this works for a lot of people, but I really don't get on with CGM and I only used it for a week), I'd almost certainly need a c-section and have a large baby (I'm on course for a natural, albeit induced, birth and he's currently looking bang-on average in terms of size/weight).

If it feels right, then go for it. And 100% trust your body. You know what feels right to you and you can challenge the consultants/obstetricians if they're giving you advice (often phrased as instructions) which don't fit your circumstances.

Inka is right, you'll get monthly scans and appointments for reassurance to check everything is going as it should, alongside your regular midwife appointments. As long as it is, they're also likely to ease off a little bit and understand that you know how to manage your condition. Managing sugar levels through pregnancy takes a little more thinking about, but you've already managed a huge life change, and seemingly done it really well.

I hope this was in any way helpful, good luck!

 

[z.steadman]

Can I just say, I’ve been hit with every complication known to man with my four pregnancies. Some things no amount of preparation can prepare you for if that makes sense. You care about your own health and I just know you would care even more for your babies health. So if you feel ready then go for it . You can do this and will have all support on here you could ever need. Xx

I was in a very simular boat for my first pregnacy everything then could go wrong went wrong and it was a difficult journey. I wanted to say something simular but you said it perfectly! 🙂

Can I ask, were all your pregnancies the same? It has really put me off having more, but i am desperate for a 2nd little one. x

 

[EmmaL76]

I was in a very simular boat for my first pregnacy everything then could go wrong went wrong and it was a difficult journey. I wanted to say something simular but you said it perfectly! 🙂

Can I ask, were all your pregnancies the same? It has really put me off having more, but i am desperate for a 2nd little one. x

Ahh Thankyou !
Well here it goes .. baby 1, borderline gestational diabetes and hospitalised for body rash (head to toe) preeclampsia but natural birth. Baby born with group b step and spent 2 weeks in special care. Later discovered extreme hyper mobility syndrome.
Baby 2, c section, footling breech born with dislocated hips.
Baby 3, also footling breech and c section.
Baby 4, also footling breech preeclampsia again c section.
My womb is wonky which was the reason for all the unusual presentations.
Thing is the the maternity care is so good these days that most things are picked up early and dealt with. I would do it all again if that helps and I now have a granddaughter I will include a pic for extra broodiness 😉

 

[z.steadman]

Hello,

I have recently been diagnosed as type1 (7months ago) at the age of 33. My husband and I had been thinking about starting a family, but my diagnosis has given me other priorities recently!

I am coping relatively well with everything, I definitely have the odd sad/angry day, but my control has been good and my HbA1c is now 42 (it was 115 when I was diagnosed ).

I attended a ‘pre conception’ appointment at my hospital and I’ve come away feeling pretty disappointed with the conversation. What I’m trying to work out is the answers to the big questions like ‘what are the risks associated with a diabetic pregnancy? Could it cause complications for me? What about risks to a baby?’ The fact that I’m still getting used to living with type1 has me questioning whether this is the right time to think about conceiving and the extra stress that will add to managing my diabetes. I feel like I need honest answers from my healthcare team, but all I got was ‘your hba1c means you’re good to go, here’s a folic acid prescription!’

I was told there’s no more risk than in a usual pregnancy, which sounds unlikely based on my own research, so I asked the question ‘if there’s no more risk, why do my sugars have to be even more tightly controlled? That implies that the control I have now would equal some risk?’

I imagine the DSN was trying not to worry me and to be positive, but what I actually need is the information to help me decide whether this is the right thing to be considering right now on top of a fairly new diagnosis.

If anyone has been in a similar position or has any insights that could be helpful, I would really appreciate it! This is a huge (and potentially very exciting) decision to make, and I feel a little bit alone with it as I don’t know any other type1s!

I would say just go for it! I was worried about it for YEARS and all of a sudden one day I just felt like I was ready. Its not easy at all but the outcome is worth every second!

Ahh Thankyou !
Well here it goes .. baby 1, borderline gestational diabetes and hospitalised for body rash (head to toe) preeclampsia but natural birth. Baby born with group b step and spent 2 weeks in special care. Later discovered extreme hyper mobility syndrome.
Baby 2, c section, footling breech born with dislocated hips.
Baby 3, also footling breech and c section.
Baby 4, also footling breech preeclampsia again c section.
My womb is wonky which was the reason for all the unusual presentations.
Thing is the the maternity care is so good these days that most things are picked up early and dealt with. I would do it all again if that helps and I now have a granddaughter I will include a pic for extra broodiness 😉

Oh wow! You really did have a bit of a traumatic time! Well at least all your babies were born hapoy and healthy! At the end of the day though everyone’s pregnancy experience is different, there’s good and there is bad and you just have to ride with it don’t you. I could traumatise a lot of people but I’m here and I have my little girl so that’s all that matters

And stop, look at those little chubby cheeks bless her heart!

 

[LunaLG]

So good to hear from other people who have been through the process - I have a lot of non-diabetic friends who are sadly going through fertility issues, so you never know what hand you're going to be dealt do you.

I'm just finishing my DAFNE course and am switching insulins (NovoRapid to Fiasp and Lantus to Levemir), so have a meeting booked with my consultant in July to have a post-DAFNE review. I think we're going to use that as a good opportunity to chat to her about starting the folic acid and coming off contraception later in the year. I'm sure I'll be coming back to you all with more questions later in the year