Any pregnant Type 1 diabetics?

[dieciocho]

Hi,
I'm looking for other pregnant Type 1 diabetics in London, just to have someone to keep in contact with and share advice/horror stories/support each other etc.
I don't actually know anyone at all with Type 1, despite having had it myself since 1989

I'm planning to start reducing my carbs (and therefore insulin) as my MW said my baby might develop an unusually large tummy due to the high levels of insulin I'm could end up taking in the next few months.

rosieposey your doses are much higher than I've ever been on, but maybe that's because you're Type 2
I take about 20 of Novorapid at breakfast, 5-ish at lunch and 5-ish at dinner. I take 8 of Detemir at breakfast and 2 at dinner.

My diabetes consultant told me that it's common for insulin requirements to go up by 7u per week during the 2nd trimester. So don't worry!

Also, to see just how many sweets/how much pop you need to correct a hypo, have a look at "Carbs and Cals" - good, clear picture book for diabetics.
BTW, I only need about 5 cola bottles (for example) to get my blood sugar back up from 2 to 5 or 6

Oh and that's cola bottle the sweets, not bottles of cola!

Hi dieciocho, thanks for replying - i saw my endo yesterday and he said basically not to worry about the amount im injecting and that some people (type ones and type twos can end up on 200 units per meal sometimes - i just get very insulin resistant in my pregnancies and it seems to get worse with each one).

He said my bg's weren't too bad at 8's and 9's after meals but obviously they would like me to continue working on getting them down. He also said that when my insulin requirements drop at the end of the pregnancy (like they did in my last one) that i will probably need to go down by as much as 10 units per day till i stop having hypo's.

Thanks for the advice re how much sugar to have when having a hypo - i will swap the cola bottles for jelly babies :) I miss them! I will get a copy of carbs and cals too.

I haven't been told in any of my pg's about babies tummy's getting bigger due to increased insulin - it makes sense i suppose, i can't wait for this pregnancy to be over tbh - its my last one and i just want to get DS out safe and sound.

I've been meaning to post on this thread for a while,sorry for the delay!

I'm in south London, I'm not pregnant at the moment, but am T1 (nearly 30 years since dx), pumping for the last 8 years, and have a DD who is 5 and a DS who is 2. Both born by CS due to retinopathy complicating things. I'm also on the diabetes-support website, though haven't logged in for ages.

DD was delivered at 39+something weeks, DS at 31+3 (he's a surviving triplet). Both were BF for about a year.

They normally deliver at 38 weeks now because a diabetic placenta ages quicker than a non-D one, so 38 weeks is approx equivalent to 42 weeks IYSWIM. Insulin levels dropping in the 3rd trimester can be a sign that the placenta is failing, take it seriously and get checked out.

If you're planning to BF, be prepared to drop your insulin levels to about 75%ish of pre-pregnancy levels - often nobody warns you that BFing causes your sugars to drop through the floor. NEVER sit down to feed without jelly babies to hand, to go with your glass of water Certainly nobody told me, hence DH getting a call at about 3am on the 2nd night in hospital, saying "no need to worry, but we've moved your wife back upstairs...she had a hypo..."

Speaking of which, take lots of snacks into hospital with you - hospital food is dire, I carb counted one days menu after I had DS, there was a magnificent 75g carbs for the whole day.

If anyone's got any specific questions about T1 and babies, I'm happy to try and answer them we're TTC #3 currently, I'm getting very impatient with things!

Thanks for your post ruedewakening, it's really helpful. I am 22 plus 2 and this is my first baby and have started worrying about things as you read so much stuff! My hba1 was 6.2 before conceiving and is 6.1 now so I know I am doing ok but I have mild diabetic retinopathy, not caused by pregnancy as discovered it a few years back so have had laser treatment once and now thankfully all seems okay. Still panic though when I read that labour can cause too much stress on your eyes, is that correct? Thanks also for the tip on BF as I would never have known that.

Wishing you lots of luck in getting your baby no 3!

X

Pregnancy generally causes retinopathy to get worse, have you had it checked in each trimester? Worth following up if not. But yes, it was my eye consultant who wrote to the hospital and basically demanded that I not be allowed to go into labour - as it turned out, the precautions didn't work and I had a massive bleed when DD was about 6 weeks old, which was fixed with an op when she was 8 months or so.

Thanks for the luck, I'll take what we can get!

Hello again RueDeWakening.
Were you at King's when you had your daughter? I'm interested in your 39+ delivery date with her, I'd love to be allowed to go that long.
What was it that meant they let you go that long? I'll try to copy it!

Thanks.

Rue - my placenta was really calcified when i delivered by cs at 38 weeks 3 years ago. I was having hypo's right left and centre from about 34 weeks onwards and my placenta was closely monitored. I agree about being super vigilant if you are having loads of hypos - i was terrified of something happening to DS and i am the same with this pg, if any hour passes without movement (he is quite a wriggly baby) i am really paranoid - think i must have been up to the day assessment unit a good 9 times or so in the last week of pregnancy due to ds having a quiet day.

I have had the eye drops where you cant drive, I have to have a retinal eye scan too at some point shortly I was told there is alot more risk of bleeds in pregnancy - its really scary to think that you actually had that happen Rue :( My consultant said he couldn't see anything bad but wanted me to have the retinal eye scan as it was far more accurate and detailed (and i had an hba1c of 11 pre pregnancy).

Its really interesting advice, i will remain on insulin now i am told and had been planning to BF (didn't with my last DS) so the jelly baby advice is welcome - makes sense i suppose as lo is taking alot out of you calorie and energy wise. Good luck with your next pregnancy anyway :)

Hi there Rosie, and welcome to the thread.

Although it sounds like you are having a hard time, it does sound like you are perhaps better off on insulin.

Can I ask you whether you have been told much about carb counting? It is just odd to read that you are on fixed doses of novorapid because really you should be adjusting the amount you take depending on what you eat... Also, you should be able to adjust your doses to ensure that you are not having those middle of the night hypos at all - perhaps you need to reduce your Lantus dose if you are continually dropping in the night. The issue with hypos is that the more you have, the less you start to feel them as you lose so-called 'hypo awareness'.

I am on no where near the doses you are taking... I'm on a different long acting insulin from you. I take Levemir rather than Lantus which is usually taken as a split dose morning and evening (I take far more at night than in the morning) but have a total daily dose of only about 28 units at the moment. I am on a total daily dose of Novo rapid of around 40-50 units. This is waaaay more than when not pregnant, but no where near your doses.

Having said that, I am only 12 weeks pregnant and this may well mean that my doses are only going to keep rising.

I mentioned it above, but I would really suggest you visit the Diabetes Support Forum website (go into the forum, rather than the general information section). The link is further up the thread. It is NOT connected to Diabetes UK which I think spout a lot of old fashioned tosh about diabetes. They have a pregnancy board on their forum but also loads and loads and loads of super helpful people who might be able to give you some general advice for controlling type 2 diabetes, not just when pregnant.

The main thing you can do - and I know it sounds painful - is to moderate your carbohydrate intake or at least understand which types of carbs you react to well and which will send your blood glucose soaring. It's really simply: carbs = glucose and without insulin we can't process that. Of course you can't cut carbs out, but you can choose carefully what you eat and avoid big portions of some of the main culprits like bread, pasta, potatoes. That may allow you to drop your massive doses of insulin and in turn have reduced risk of hypo. Just a thought, and of course you really need to read into it yourself...

BonaDea I did mention to the Endo that i would like to know how to count carbs because i know that you can adjust your insulin doses according to what you eat. Tbh they just give you a start dose and then tell you to increase by two to four units everytime you go over the magical 7.5 mmol an hour and a half after meals.

I know from speaking to other type 1's that they take different doses according to what they eat - this isn't the case when people with GD are put on insulin - they start off on a certain dose and stick with it till the test sticks start to register a higher mmol

I asked him is anyone else on these massive doses and he said some people are on 100 - 200 units per meal per day, it all depends on your insulin requirements and insulin resistance towards the end of your pregnancy.

I know a little more now from reading up on low GI carbohydrates whats a better choice and what is going to send my BG's crazy - for example new potatoes are a much better bet than mashed potatoes. The Endo did say as you have that one way to cut down the doses is to reduce the amount of carbs you have - god thats depressing isnt it and although i try and stay away from sweet things and 'bad' carbs i am quite dependent on Carbohydrates as a rule and crap at controlling portion sizes.

I know that some type ones can lose their hypo awareness and thats a really scary prospect, you are just sort of left to get on with things if you are a type 2 or have GD and i do understand why because nhs resources are better directed at type 1's as this is far more progressive and dangerous than type 2. The trouble is my type 2 has not been well managed and i have high HBA1cs so am so glad i am on insulin now as the Metformin on its own was doing nothing.

Oh i forgot to mention on top of these really high doses of Insulin i am taking two Metformin in the morning and two in the evening as well and with regards to the Lantus it was in my last pg that i had really bad hypos in the middle of the night but that was because my placenta was starting to fail. I have only had one in the night so far this pg and that is because i had a chicken salad with virtually no carbs in and i being a bit of an ignorant type 2 didnt know at the time about needing at least some carbohydrate when taking insulin.

Its a balancing act i know and i probably need to arm myself with more information as its not just this pregnancy or my previous ones, im stuck with this for life and i have not been taking it as seriously as i should have (was in denial a little after the birth of DS three years ago) so i need to be around for a long time yet!

Will have a look at the forum you suggested as well, i did have a look at a diabetes forum once before but i was really sad and pissed off at my diagnosis so thought i would bury my head in the sand a little longer - perhaps this pregnancy (which wasn't planned but was a happy accident as i thought 40 was too old for another one) has saved my life and made me start to take diabetes more seriously.

Me me me! I'm T1!

I've had one healthy baby but this one is unplanned...not good. And so unlike me!

HBA1C was 7.5% at conception whereas last time I was A Grade diabetic with 5s thoughout. I have to say I'm less stressed this time though. Last time was a blur of hypos - so although my HBA1C prob will be higher thoughout this time, it's 'truer' in that it's not just low due to constant hypoing!

I've just discovered almonds...if you eat them as a mid morning snack they keep my BG levels so steady over lunch. It's astonishing. Please try and report back!

Also giving myself more long acting through the night. I tend to be verging on hypo all night but it helps keep things lower the next day.

Are any of you on CGM? We've self funded it and it's worth it's weight in gold. It really is. If you can afford it do it.

No issue with breastfeeding. I did it for nine months with DS and it keeps your BG levels on the low side.

Any questions please ask.

Hi BonaDea, I'm pleased you're on the thread again; I was worried that your 12-week scan might've gone badly.

I'm trying your suggestion of injecting before meals to prevent peaks, esp. after breakfast, and so far so good. Thanks for that.

Thanks for the advice mylittlepuds; almonds are on the shopping list!

dieciocho no, I'm here, I'm here! 12 week scan was great, thanks for thinking of us! The LO wsa in there jiggling his/her way through the whole thing, waving, kicking legs (sometimes one at a time, sometimes in frog kick fashion). Was a lovely experience, and I think that for Mr B in particular it brought it all home!

rosie - I think it is genuinely disgusting that someone would be given what is in fact a dangerous drug like insulin without being given the least bit of instruction on how to use it. A serious hypo can kill us - either because you simply collapse, or because you fall down stairs or crash your car. It's really unforgiveable of the NHS. When I first started using insulin I test test tested to figure out which doses I needed to give myself and figuring out which foods affected me in what ways. I also went on internet forums and bought and read a fantastic book with the slightly dubious name of "Think Like a Pancreas". It is very very useful. Now might not be the time to embark on this, particularly with your busy life, but I think if you stay on insulin you must either insist on proper training from a diabetes specialist nurse or resort to self education! Any questions, ask us junkies

Mylittlepuds - I had a GCM for a week at one point when I was having real difficulties with dawn phenomenon and fasting blood glucose. This was about three years ago. I would be interested in self-funding if I thought it was worth it. How hard was it to get organised and what do you see as the main benefits to you?

Oooh - we are quite the merry crew now, are we not?

*CGM that should have said!

Rosieposie - hypo tip. Four glucose tablets, wait 15 mins, retest. Has stopped me over treating a hypo.

When I was diagnosed type one I was given no training on how to work out insulin levels either. I ended up injecting 8 units Novorapid with a fish salad one night...

CGM during pregnancy is a lifesaver for me as I suffer with bad anxiety. It was £1000 for the Abbott Navigator and it's about £220 a month for the sensors. I have had a PCT funding request knocked back, but we're appealing.

V easy to organise - just rang Abbott and it came the next day! Main benefits peace of mind - predicts highs and lows - as well as always displaying your reading. Also I know how I react to certain foods so much better now.

Rosie it's disgusting that you're injecting such large amounts of insulin and they've not armed you with key knowledge. Like I said above, I was put in that situation too. It's crazy dangerous.

Carb counting is so simple. Don't know if anyone above has explained but basically you work out what you need per 10g of carbs. Say a slice of bread is 20g of carbs (it will tell you on the packet) you may need a ratio of one unit per 10g, meaning you'd take 2 units of insulin - and so forth. I'm on about 3 per 10g of carbs at mo for breakfast. So if I have a slice of toast I inject 6 units. You see?

You can also 'correct' a high reading, although you do need to be a lot more careful with this. I take one unit and it takes me down three mmols in approx an hour and a half.

Rosie - yes also think it might help you to stick to say 30g of carbs per meal. Totally agree about new potatoes - they are fab!

I know its nuts that they don't give more info - especially re carbs. I have been secretly correcting high bg's myself depending on how high they are as i know type 1's do this. I had no idea about the units needed to bring myself down from say 10.4 so i have made a couple of mistakes (15 units once and hypo'ed within the hour) but now i generally put in an extra 6 and that does the trick when i test an hour later. Thanks for the info on how many units i need to bring it down though mylittlepuds because i had no idea - has all been guesswork up until now.

Am going to have a go at carb counting using the method above and try and stay within 30g's of carbs per meal - will do my best anyway - does anyone know where you can find out the generic carb info on things like potatoes, pasta and things like that? What about fruit - ive been having a couple of pieces of fruit a day with main meals and it doesnt seem to have any major effect?

I know its not great but how do you manage things like treats? I had a look at the carb free megastore and even though im not a massive sweet or chocolate eater its still nice with a movie at the weekend. Are they particularly bad for you and even though they dont have sugar and low carbs do they mess with your bg's too?

Thanks for the hypo tip as well - had no idea that glugging a bottle of lucozade and scoffing a mars bar would do that much damage nor that i needed so little to get my bg's back up within 15 mins - all i want to do when down in the 2's is scoff and stop shaking!

Im at the Swindon Great Western hospital and they do keep a close eye on me via the day assessment unit (i have a blood pressure series every two weeks incase of PE am on asprin but i havent had it before so fingers crossed) but i have only been seeing the endo and obs in a combined clinic every 6 weeks or so - growth scans start in a week and a half so i hope all is well with my little guy. I ended up on Methyldopa for high bp in the last few weeks of my last pg and probably will again but so far so good and everything apart from the diabetes seems to be going swimmingly.

I am really in admiration of you ladies, unless you know any diabetics it seems no one knows how much of a juggling act it is to keep yourself and your baby healthy, the reniopathy scares the shit out of me and i was warned about bleeds being more common in pg - this really is the last time for me!

Might try and get that book too 'think like a pancreas' it will make for interesting reading and prepare me for taking better control of the disease when i have my lo.

Hi Rosie. To find out the amount of carbs look on the packet. It will either say carbs per item or per 100g, in which case a kitchen scale comes in handy. Also as another one of the ladies mentioned Carbs and Cals is great. If you have an iPhone you can get the app.

Just be careful, I'm not a doctor and would hate you to be gung ho with the carb counting and hypo. Initially I'd just start working out what you'd take and whether it correlates with your current method. I'm just so cautious as hate hypos. I have a real fear of them which is no good for a pregnant diabetic really!

Have any of the T1 ladies who've had babies suffered from PND/anxiety after the birth? I did badly, and apparently it's more common in diabetics so would be interested to find out.

Hi

Yes, get seen every trimester for my eyes and so far so good.

X

Hi ladies.

I need to have a vent.

What a day yesterday was. After spiking at breakfast I hypod an hour and a half later. After I drank some Lucozade I inevitably spiked again and was on the high side for a couple of hours after correcting. I had lunch (daring to have afters as was at a christening) and was then on the high side ALL AFTERNOON. A day of teetering around 10/11 - or so it felt. And it all felt like my fault!

Today I was determined to 'do better'. But I had a HUGE hypo after breakfast. I gave myself 4 glucose tablets and waited 15 mins but my level dropped even further! I then panicked (as I'm work on my own and no one else is in the office) and drank a load of Lucozade. Lo and behold BG then went through the roof. After correction (and another hypo) it's finally settled.

I am soooooo frustrated and worried! After a couple of weeks of fabulous control it's all gone very up and down. I'm only nine weeks so very, very worried about the impact this last two days has had on the baby.

Can anyone please reassure me?! Does anyone else have struggles like this sometimes and feel like tearing their hair out?

Yes, Mylittlepuds, I did and still very occasionally still do have days like that, even though I'm 21 weeks now.
Days when it feels like you have a totally different condition, not diabetes, because it's refusing to act like normal diabetes.
Someone else said hypos in the first trimester can be to do with growth spurts.

Just to reassure you, at my 20-week scan everything seemed normal, so my up-and-down days appear not to have had a major impact...

Thanks for the message dieciocho :) You've cheered me up. It's a bloody nightmare sometimes, and I've been through it once not that long ago!

My husband is so lovely but when he says "It's fine," I just get irritated and think "Do you know it's like to have such a responsibility!".

Thanks again :) I really do appreciate and I'm happy for you in that all is okay.

Morning ladies. I have also found the "Collins Little Gem pocket calorie counter" to be great (get the calorie one, not the carbs one - it has both). It is a tiny little book so you can cram it in you handbag if needed, but lists just about every food under the sun. You do need a set of scales at home, though... After a while you get the hang of it!

It's hard not to panic with a hypo isn't it, especially if it is on the lower side of normal for you. You can't think straight, which is one of the symptoms and the whole thing can just spiral from there. I have to be quite strict with myself when treating a hypo otherwise I'll go mad and end up spiking after half an hour. Easier said than done sometimes, though...

ONe thing i've started doing is having little bottles of fresh orange or orange / raspberry or smoothie around the place. They are just as 'sugary' as coke or lemonade or similar so good for treating a hypo but I kind of figure at least if I drink them I am also having something nutritious with lots of vitamins for the baby!

As for people understanding... no one can. I feel like I'm carrying a HUGE amount of responsibility around at the moment and I'm finding the constant worry, testing, injecting, hypoing, correcting to be exhausting. Of course, it is for the best possible reason but I do feel a little bit resentful that I can't just get on with enjoying my pregnancy like a normal person. Not that I'm saying you ladies aren't normal....