(New) Type 1 Diabetic & Trying To Conceive

[KickTheGuru]

So, after TTC for 10 months, I suddenly went through massive thirst and peeing lots and increased heart rate and, and, and. Three weeks ago, I stopped being able to eat or drink, then I started to vomit. I was taken to hospital and they discovered Type 1 Diabetes.

I had a sugar level of 37, body temp of 32, no phosphate, no potassium etc etc - severe diabetic ketoacidosis. In High Dependency Unit for 3 days. Then off work for 3 weeks - dealing with fuzzy eyesight and hypos. The good thing with the hypos is that I feel the coming so can ward them off. I get a slight increase in temperature, my hands go clammy and I start to shake shortly afterwards.

So obviously, no more TTC sobs but waiting for the 3 weeks ago 15.5% hba1c to come down. A week ago, it was at 12.5% so I still have a while to go.

My sugars are now between 6.5 - 8.5 ish and am eating well and just about ready to chuck some running, cycling and swimming into the mix.

Just like...wanted to know if there was anyone else out there? And what your experiences are?

I know Type 1 is fairly rare. I would imagine even more so in a 30 year old, semi-triathlete, with no diabetes in the family at all. My DH and I want a baby but now can't seem to without being told that I will damage any child that I conceive for an indeterminate period of time.

Sad. Dot. Dom. :(

Aww pet, have a big hug from me. It sucks, it really does but with a bit of work you WILL get your HBa1c down to an acceptable level and be in a place to TTC more soon than you think.

I've been a Type 1 diabetic for 21 years (I'm 30 now) and although it is in no way an easy thing to live with, it is manageable and with a bit of time and some good advice it will all become second nature.

You're probably suffering a bit from information overload but I can point you in the direction of a few excellent books which I still find helpful after 21 years. There are also some very good forums and blogs which will help you to get your head around things and also show you that you can manage this.

TTC wise (I've just started TTC so I've read EVERYTHING to do with this and diabetes!), the most important thing is to get that HBa1c down. Don't be afraid to ask for advice/support, test those blood sugars constantly, and, in time, perhaps think about the possibility of getting an insulin pump which can make huge, positive changes to your diabetic control.

And please, don't be afraid to message me - I'll help you though this

Hi kick. I can't help at all (have no knowledge of diabetes) but I remember you from the May & June threads and wanted to wish you lots of luck ttc.

Hope you get your Hba1c down soon.

Hi, what a shock for you. I'm type 1, diagnosed 12 years ago at age 27. I've had three children. I'm on an insulin pump since my third child and that has really changed my diabetic life. I have recently read "think like a pancreas" - American book off amazon. I test around 6 - 10 times per day and more if exercising. I've just got my HbA1c back to 6.5 without too much hard work or hypos. I tend to moderate what I eat and stay off white bread, pasta, rice etc. in fact I found healthy veggie food has been a lifesaver but I will indulge when I want chocolate, cakes etc.

On diagnosis my HbA1c was around 12 but it came down really quickly and we had our first baby not long after.

My advice would be to give yourself a bit of time adjusting to the shock of your new life and learning how to manage your diabetes. Take everything the clinic will offer you, especially if you are adamant to them that you are intending to TTC - they tend to offer more support e.g pumps. Don't listen to scare stories about huge babies and other. There will be added stress factors but they are manageable. If I could persuade DH and I would still go through another diabetic pregnancy to get DC4. X

Thanks for the replies. I am really lucky in that my food lifestyle doesnt change much. I have sweetners in my coffee now but never drank fizzy drinks or had a sweet tooth. I prefer brown rice and brown pasta.

The injecting doesn't bug me and i test about the same - 6 - 10 times a day. The hospital said i would probably go on a pump because i run or cycle for a long time.

I bought think like a pancreas yesterday so thanks for that.

Today i feel more in control. I seem to have low lows. My nurse said they wanted to throw exercise in before we etc but i just want a baby. We tried for ages and then this happened and it doesnt wipe the slate clean and clear thwarting history. Although at least i know why i wasn't getting pregnant (clever body), i am also confident that i can get my levels to normal in 6weeks. Is that unrealistic?

I also read that you can run for up to an hour without worrying too much about hypos. i would test before during and after and monitor closely.

Any experiences with training? Or even weights? At the gym. X

And bojangles - how long after diagnosis did you fall pregnant? How long did it take levels to come down from 12?

Hi, my levels came down quite quick and I was around the 6 mark prob within 4 - 6 months. We didn't TTC for a while for other reasons but when we did I was pg in 6 months. Of course you want to start TTC again as soon as and it is great that you are keen to master diabetes. If you are going on the pump I would say wait for that settle for a few months first. The pump requires lots of input to understand your needs but the more work you put in the more you get out.

I do go to the gym but I'm afraid I struggle with a set formula as I find it varies depending on my menstrual cycle. The pancreas book explains exercise really well and the effect of types of exercise and adrelin on your bg. I sip isotonic lucozade throughout and turn my basal down.

How low is your bg when you have Hypos. My hba1c was excellent for first few years but I was hypo most days and felt pretty yuk. Since being on the pump I am rarely hypo and now have much better control. Even though my hba1c is the same. You can have a good hba1c and still fluctuate between high and low.

The real pain with type 1 is the variables. So much can effect your bg that sometimes no two days seem the same despite eating the same etc. you will need to find out this about yourself as you will become an expert in your own needs which will vary to mine.

Sorry if rambling am trying to make breakfast.

Hope that helps.

whenshewas

Thanks for the message. I'm sure it will be fine soon enough. Just gutted it happened when I was so sure we were closer to being pregnant. In fact, all the symptoms from the diabetes made me sure I was pregnant every month.

Although, they said that if I thought they were pregnancy, I shouldn't have too much of an issue with pregnancy then :)

I hypo at about 3 -4 now. A week or two ago, it was 7-8.

Yeh the pump and exercise are both completely secondary to me being able to get back on the TTC wagon. I don't want to wait another year. The first year has been an emotional eff up and now, to push that back further because of diabetes and then even further to wait and then even more so because my body won't fall pregnant immediately...

Anyway, I said to DH tonight that my focus is set on bring overall hba1c down as quickly as possible. I suppose its how I deal with the new diagnosis - focusing on being able to TTC as soon as I can. Then I can deal with the rest of having to inject for the rest of my life.

Bojangles - how old were you when you had your kids? And are you trying for another one? I know its so stupid but I worry so much about my age - I am 30. If this carries on, I will only fall pregnant potentially in a years time. I want more than one child - I don't only want one kid and I feel like I am running out of time.

[gives kick an un-MN hug]

Glad to see you back and getting under control again :)

Hi, completely understand about just wanting to get on with TTC. I was 30 with dc1, 33 with dc2 and 35 with dc3. Got a lot of persuading DH before we TTC no 4, I'm nearly 38 so time an issue.

My first pregnancy was my best. Suspect with being newly diagnosed I was on a prolonged honeymoon period and my diabetes was quite easy. So in that respect sooner rather than later might help you. My first two were without pump just on basal/ bosul injections and the third was on the pump. Actually my worst pregnancy but that prob wasn't to do with the pump.

Prob the key things for you are carb counting the 'carbs and cals' book is very good plus you can get a phone app. And try writing everything down to get a feel for patterns etc. the first three months of pregnancy are tough being diabetic as you can get crashing hypos as your insulin needs drop.

Just popping in to say hi to kick x

Hi Kick: just to say that I work in adult diabetes in secondary care, including pre/pregnancy services.

The gold standard is to achieve & maintain a HbA1c (long-term control) of

Hi ladies!

Winkle - any news? Am still hoping for you but I must admit, I find it very hard to be on the "yay I'm pregnant" threads now so I am staying away.

lotsofcheese

And yes, they have a DAPHNE course at St Thomas's so will ask tomorrow when I am going on that.

Hi KickTheGuru, I don't have first hand experience but my DH is Type 1 and was diagnosed at 8 years old. (now 26)
Despite having it a long time, in the last 6 years or so he has managed it really badly and it has had lots of side effects because of his poor control.
(Bit of a delayed reaction - extreme bitterness and denial about being diabetic I think)
One of the side effects is that to put it bluntly, he has made himself infertile so despite almost 3 years of TTC, we are no further forwards in terms of having a family so I really sympathise with you in that respect.

You certainly sound like you have the right attitude towards the whole thing, which is what my DH has been lacking.
However, after a bit of pushing from the hospital, he has been sent to the DAFNE course (he is doing it this week in fact) and I would highly recommend it from what he has learnt so far.
Even in less than a week he seems like a different person! The DAFNE course has really opened his eyes to how he can live a really 'normal' life through just thinking a bit more about what he was eating.
I would definitely look into the DAFNE course.

You sound like you really have your head screwed on, you should be really proud of your attitude and the way you have handled this big change!

I don't know too much myself about Type 1 myself (shocking I know) but I am always here if you want a chat about TTC woes!
[hugs]

Hey, kick. I'm in a bit of a dilemma. On the one hand I want to say to you 'go for it as soon as' and you can deal with any issues on the way and hope for the best and on the other hand I want to say "hold off for a few months" it's nothing in the whole scheme of things and a few months of good control will not only ensure your future baby gets the best possible start but also you will have a bit more diabetic knowledge under your belt. I'm afraid I'm going to go with the latter. It is great that you feel so in control of your diabetes now but it doesn't always go like that and often that is the biggest problem of being type 1. I read so much and work very hard but often I am left scratching my head as to why my sugars behave in a particular way. What my previous posts don't say is that whilst I do have three children my pregnancies were not great and I had a lot of complications despite having an hba1c of around 6.5. All of my babies were delivered early with differing problems. I wont go into details here but if you want to know more I'm happy to discuss. I guess I want to save you from some of the problems I experienced along the way but at the same time I want to encourage you and say 'go girl'. If you need any advice or support then please feel free to message me. X

Hello kick sorry can't offer any help here but good to know your health is getting better. Xx

Nope not preg yet :(

Hi there,

Welcome to the getting type 1 at a totally unexpected time of life club....I was 30 and now 36. Think Like a Pancreas is definitely a good start, I would also recommend Pumping Insulin by John Walsh, even if you are not on a pump you will learn a lot about how your body is functioning (and as you learn the quirks of your own body and see what a terrible job MDI does, you will soon be pushing for a pump). It is a long journey and learning never stops. Also remember that unless you are not particularly intelligent, you will learn FAR more by doing your own research and taking a mathematical and scientific approach to things than you will from any health professional, however highly acclaimed: if you get where you should be, they should be learning from you. there is ALWAYS a reason for what happens with your blood sugar, its not just random, its just a case of working out what it is. As a woman, it is even more challenging, as you go along this journey, you will see things like peaks in insulin resistance at ovulation and leading up to your period as well as the usual effects of temperature, stress, activity level etc.

I have been pumping for most of the time I have been diagnosed, without the pump i found it unacceptable to have to inject extra rapid acting insulin during the night to control my blood sugars (despite what you are told about long lasting insulins, they are a very poor approximation to what your body needs, for example, in the early hours of the morning my basal is three times what it is in the afternoon, and despite the assurances of diabetic nurses that its ok, a blood sugar of 8mmol/L is not an acceptable place to be other than for a short time after meals - keep your levels non diabetic). I work hard to keep my HbA1C below 6% and during pregnancy it hovered between 5.3 and 5.6. whether pregnant or not creating a non-diabetic environment will ensure that you dont develop complications, and whilst most diabetes nurses and doctors seem to think excellent control must be blighted with terrible hypos, it really isnt like that at all, I have never had a hypo that required assistance, and my blood sugar has dropped below 3 probably on about 10 occasions in the last 3 years, it rarely goes about 10, and the only time I can remember recording a blood sugar above 20 was one time a couple of years ago when I grossly underestimated the amount of pick and mix I was troughing in the cinema!!!!

When you are first diagnosed, things change quite a bit in the first year. It is not a case of BANG the pancreas is gone, it is a gradual process....for this reason, I would give it a year to settle before trying to conceive, as well as the fact that you need to be the person in control, to understand your body and what its doing, and what it will do in pregnancy. That said, I found pregnancy by far the easiest time to keep my control tight, the changes were frequent but predictable and uni-directional, unlike the rest of the time where the menstrual cycle is quirky and unpredictable!

Good luck with whatever you decide and feel free to PM xxx

I will PM you - thanks for the information.

I've noticed that everything (even a lot of the books) and written for the lowest common denominator and I'm happier doing my own research and sorting out my own issues (as you say).

I've noticed this week that my BS has gone from 4 - 5 on average up to 7 - 8. I am PMSed, have had a cold and am very tired. Am giving myself rapid acting insulin on a more level basis (couple units every two hours) and watching it come down a bit more. It's been the last 3 or so days and it's good to see that and to learn how to manage it. Someone told me the glucotabs were better than sweets at raising BS and they are - so I bought a bunch of them. I incrementally inject insulin in-between meals if my BS is high - and I've not hypo-ed yet (shows how my body is just needing the insulin!).

I read on a forum that someone with Type 1 who'd had it for years and is pregnant hypo-ed and she ate sweets, a banana and had a glass of apple juice. Then wondered why her sugars shot up too high. I am doing a hell of a lot better than that and it's only nearly 5 weeks in. I know what I can and can't eat (or not can't - but what requires more insulin or insulin over a period etc etc).

At least today is my last day in work for a couple weeks so I get more time to figure it out. Thanks for the heads up on the pumping book. I will look at getting that one asap as well.

As for conception, I have to say that I will take my own lead in that one. The therapist I spoke to and all the nurses are happy for me to go ahead when my hba1c levels are down. It's a long story but I am just not waiting. Diabetes is the rest of my life while pregnancy and having babies is the next 5 years. My priority here is to be healthy and have a baby. And I don't want to risk them getting downs syndrome either. The way my life goes, any thing that I am at risk for, I will get. So I am not prepared to put that on hold as well.

And we've been trying for a year anyway. I am just not waiting a year to try, then potentially risk another year of trying, to find we need help or something. Just not worth it to keep waiting. I want more than one child as well and I'm prepared to accept the horror that pregnancy will bring.

And since my pancreas can totally quit in days, weeks, months or years - it's not practical to wait for that to happen. Even the doctors said that.

I currently take about 45 - 50 units a day (basal and bolus) - which is contrary to what they believe a positive c-peptide test requires. Which would indicate that my pancreas isn't producing any insulin. What they did find in adults is that the requirement will drop (or be low) after diagnosis and this will result in an almost zero (hence the need for half unit flex pens) insulin requirement. My requirements have increased in the 5 weeks since i was diagnosed and certainly have increased week on week since leaving the hospital.

While i know that coming back to work, PMS etc etc all contributes, it all also points more to my pancreas still not working at all and not producing any insulin. Which would indicate that there is a chance that my "honeymoon" period has already elapsed. Just my thinking :)

I do also think that my diabetes was coming on for the better part of a year. The nurses said that considering my level of DKA and how sick I was, I shouldn't have been able to walk, let alone swim 1km or cycle 60kms. I think my body has been through the worst of everything.

From the research that I've done, the honeymoon period is literally your body being happy that you're injecting insulin and your insulin requirements drop.

Mine have only increased.