Planning and pregnancy with Type One Diabetes

Looking back over my pregnancy journey I can honestly say that having T1 Diabetes didn’t hold me back once. Yes I suffered a lot of hypos and occasional resistance but all in all after all the horror stories I read and all the anxiety I occasionally put myself through thinking about the what if’s, it all worked out.

Since having Florence I have received a lot of emails from Type 1 Diabetics asking me a variety of questions with regard to pre pregnancy and pregnancy itself. So I thought I would combine all the questions in to one blog post in the hope that it will help, inspire and banish a lot of myths!

Before I got pregnant I had been told a variety of horror stories, I’m not going to list them as I’m sure you’ve heard them all if you are T1D and considering pregnancy. I think with anything in life everyone decides to give you their ten pence worth or suddenly becomes an expert / font of all terrifying knowledge even if they and excuse my language, know sod all about it. From the age of about 8 and spending a lot of time with my younger cousins I knew I wanted to be a Mummy. It’s something I thought about on a regular basis and after my diagnosis at 17 I was even more determined to make sure I could have a family.

So, here the story goes….

My story’s a little different to most people when it comes to the planning part. About 8 years ago I was diagnosed with Polycystic ovarian syndrome (PCOS), through an ultrasound and blood tests. I hardly had periods, I was overweight, I had oily skin, excessive facial hair and I had been diagnosed with Type 1 diabetes 3 yrs before. 3 years later, I had stopped eating sugar, most carbs and lost a huge amount of weight, banished all my PCOS symptoms and suddenly had regular periods (by comparison).

Then, on October 12th 2015 I visited a gynaecologist in London before we left for life in the countryside. I went to see him on referral by my endocrinologist (diabetic dr) as I was having some pains around my sides and they just wanted me to see everyone to rule anything and everything out. What was meant to be a quick prod around turned in to something far different. The gynaecologist asked all about my history, how regular my periods were, how well controlled my diabetes was, how old I was and how old my husband was. It was all very intrusive, but I am very open (as you can probably tell) and didn’t really think twice. We hadn’t ever tried for children, but our plan had always been to hopefully start trying later in 2016. There is obviously never going to be a perfect time to start trying for a family as life is life and things happen, but I knew how vitally important it was that my diabetes was in the best control it could be- at least 3 months before conceiving.

I have been very strict with my diabetes for several years and so knowing I had good control wasn’t so much of an issue for me, it was just knowing, that medically I was in a good place. So the gynaecologist, on me telling him all of this declared that as I was 28, Type one diabetic and didn’t have regular periods (one every 23-35 days) and therefore didn’t ovulate (which I obviously did!!). Evaluating that I wouldn’t be getting pregnant without his aid… (yep, those were his words). He told me that my husband would need checking over, I would need an ultrasound and another blood test to confirm the PCOS or not and I would then need investigating, he suggested key hole surgery as one of the options. It was all a bit much for me, I just remember laughing awkwardly and saying ok. He also said I was a contraceptive pill to myself so I didn’t even need to think about contraception as I wouldn’t be getting pregnant any time soon. Having only gone in to talk about a small pain I was having, which I was sure wasnt even related to my reproductive system  I left the hospital and went to meet a friend for a drink (I’d like to say a stiff gin, but it was only 11am so it was a peppermint tea). Shortly after, calling my husband and telling him that he was basically definitely infertile, as was I and that he’d need to go to hospital for tests and I’d need an operation!!!

2 weeks later I was lying on the Sonographer’s table with a giant wand being jiggled around inside me, her saying, “all looks perfectly normal, no sign of obvious PCOS but that they’d need to put various factors (bloods, history etc) together before diagnosing it”. We both joked that it’d be incredibly ironic if I turned up again a few weeks later pregnant. Oh the irony…… because only 2 weeks after stopping birth control and declaring myself infertile, imagining that having a family was going to be a long and hard adventure, I was pregnant!

We had, by this time ,moved ourselves to the middle of middle of nowhere (something I am still regretting to this day, but that’s a story for another time), my period was 37 days late, which, to be honest wasnt completely unheard of so I didn’t really question it. The only symptom that I thought was a little strange was that my boobs had turned to rocks and throbbed. So, being a little bored in the forest and with a bumper pack of cheap pregnancy tests from Amazon in my bathroom (these ones if anyone’s interested),  I thought I’d just try one. 15 of the damn things later and I was thinking that these double red lines (although the one was very very faint) could only mean one thing, I was p.r.e.g.n.a.n.t. Obviously the first thing I thought of was to check my blood sugar, followed by overwhelming feeling of excitement and then sheer panic about the fact this wasn’t planned and what if my sugars weren’t tight enough? As preconception sugar is so important, if not more important than pregnancy sugars.

I called the Dr and went straight in, she gave me a pregnancy test which I did then and there. It was late afternoon and the result was negative, but she said it was probably too diluted for the hormone to show up as I was probably in very early pregnancy but she kindly gave me another one and said to leave it a few days and then try it again first thing in the morning,. So I, somewhat deflated at the negative result took the pregnancy test away and went home. Obviously me being me, and incredibly impatient, I couldn’t sleep that night and as soon as it was 6 am the next day I ran downstairs to my hand bag, grabbed the pregnancy test and went to the bathroom. I didn’t even have to wait ten seconds as the lines were thick and red and I was most certainly pregnant.

I saw the dr again who confirmed the pregnancy and started to book me in for all the blood tests I would need and register me with the hospital. Being T1D I am categorised as a “high risk pregnancy” and so extra care is taken and extra blood tests, scans etc. There are of course big risks associated with diabetic pregnancies but most are if you have uncontrolled sugars during the preconception phase and then run them high throughout pregnancy. Telling Ports was so exciting. It was December and our Christmas tree was up and sparkling. I decided to place the capped (!) pregnancy tests on the tree, like decorations. I went a bit wild and hung about 20 up but I knew he, being a man, wouldn’t notice straight away. When I heard his car on the drive, every emotion went through me, and I suddenly felt incredibly nervous! Crazy, given this was the man who had been there through everything and there wasn’t anything he didn’t know about me. Having kept this a secret for 24 hrs had been immensely hard

He walked in to the lounge and gave me a kiss, we chatted about his day and he made a comment on how nice the Christmas tree looked. I couldn’t believe he still hadn’t noticed. I then said, “do you like the new decorations I made”, he got up and walked to the tree, and after what felt like about 3 hours, he suddenly spotted them. There were immediate tears of happiness, and all the emotions I had felt over the days leading up to finding out came flooding out and I was telling him the whole story at 100 miles an hour. Ports was so excited, overwhelmed and jubilant. He said he had suspected something was up as I’d been waking up so early and I wasn’t sleeping well. Needless to say, 18 months on, I am still finding pregnancy tests in random places.

Listen, every female is so different and what works for one woman will be a massive struggle for another, so the things I did in preparation for pregnancy / during pregnancy are just what worked for me. Always seek advice and guidance from your endocrinologist and your obstetrician.

• Diet. Now I’m not talking counting calories, eating air, sucking lemons or drinking slimming tea, I’m talking about a diet full of balance, protein, healthy fats and healthy carbs. For 3 years now I have stuck to a pretty much gluten, grain, refined sugar and low-fat dairy free diet (please note that I do eat full fat cheese, butter, yogurt and milk and believe full fat dairy to be vital for the fat and the calcium). Eating this way helped me to take 60% less insulin and maintain a healthy weight and BMI (although I really hate the whole BMI thing and generally don’t think it’s a good representation of health at all, but that’s another story).

Throughout pregnancy I maintained this diet, I never had any cravings, I completely went off red meat and chocolate. I drank a lot of water all the time and I also drank a lot of iced peppermint tea which I adore… oh and I did enjoy full fat milk decaf coffee coolers (mouthful isn’t it!) from Costa….maybe that was my craving, but as we live in the middle of nowhere it was more of a 1 every couple of weeks! I was heavily pregnant throughout the Summer so light fresh meals were what I stuck to. There are a couple of posts I did during pregnancy for What I Ate Wednesday here and here for those that are interested.

Birth control. Prior to getting pregnant I hadn’t been on the pill for 7 years. To be honest I didn’t see the point so much as that I was on insulin daily and with everything diabetes related it was just another thing to think about and more chemicals I didn’t want in my body. I did take the pill on and off for about 4 years and each time I stopped it would take almost 1 year for my period to start again- this might be rare, but for me it wasn’t. I never really got on well with it (on the occasions I took it I tried Yasmin, Microgynon and a progesterone only pill which caused me to bleed constantly for 3 weeks- just as Ports and I had started going out….. great timing!). Plus every endocrinologist had told me that the fact I already had irregular periods by going on the pill would obviously give me periods but the cycle would be fake to what my body was used to. I wanted to be aware of what my body was doing and knowing that Ports was the man I was going to marry and be with forever I came off it and we used condoms. Since having Florence and my periods being back I have seen a gynaecologist and he agreed not to go on to contraception until we have completed our family. He said then he would suggest a coil or the mini pill, but until then to just be careful and aware of my monthly cycle.

• Carbs. People always ask me about carbs and a lot of people (diabetic or otherwise) think that they are needed for energy. There are simple carbs and complex carbs and all in all carbs are converted in to sugar and sugar affects your glucose level. My belief is that I am T1D and the less / lower the carb intake, the more controllable my sugars are and the less insulin I have to take. Having eaten this way for 4 years and not had any problems I don’t believe that giving up carbs has hindered me in any way. Of course, there are carbs in everything….avocado, broccoli, full fat greek yogurt…etc. But, they are controlled carbs, and don’t impact my sugars in a way that leaves me having to dose up on insulin and then risking correcting and a hypo.

If you can’t give up most carbs then just give up simple ones (fizzy drinks, cookies, white bread, cereal, juice, processed cr*p etc) and stick to complex carbs (green veg, small amounts of whole grains, beans, starchy veg etc)….I tend to stick to a maximum of 10g carbs for breakfast, 10g for lunch and 20g carbs per evening meal but I know for a lot of people this will seem crazy low but it works for me. I advise to avoid all sugar full stop where you can, caffeine and of course diet products. No one’s perfect and don’t beat yourself up over the odd slip up but remember you are the oven for your baby and you want to bake and nurture it with as much goodness as you can.

• Hypos. There’s a common misconception that hypers are more dangerous than hypos, but let me tell you that hypos are far more dangerous in the short-term, to you AND your baby. This all comes back to being aware of your sugars at all times, always have juice boxes / glucose in every room / bag, car etc you are in

• HBA1C. Pre pregnancy my HBA1C was around 5.9 and had stayed that for 3 yrs. On finding out I was pregnant and then getting Hyperemesis Gravidarum (read here) my HBA1C dropped to  4.5% and then stayed between 4.5-5.0% my whole pregnancy. It still hasn’t, 8 months postpartum, gone any higher than 5%, which I know is probably too strict.

• Folic Acid. I was given a high dose of folic acid by the dr about 1 yr before. We weren’t intending on getting pregnant at that time, but the dr said there would be no harm in taking it for as long as I could pre-pregnancy. I then took it up to being 13 weeks pregnant

• Vitamins. Pregnancy pre-conception Well Woman tablets. I had taken a multi vitamin daily for about 8 months prior to getting pregnant. They are good tablets, easy to swallow and they are meant to help you with your hormone health. I don’t know if they do, but there’s nothing wrong with giving your body extra vitamins. My obstetrician then prescribed me with Adcal D3 (vitamin D) and baby aspirin from 12 weeks onwards which was given to help prevent pre-eclampsia, something that diabetic women are statistically more likely to get, but taking BA really helps to reduce this

• Exercise. Before I was struck down with hyperemesis I was hill jogging daily for about 30 minutes. I find that short sharp bursts of exercise are enough for me and always leave me feeling well and I know have helped with my low insulin intake

• Insulin pump. This is my must, in fact this really should be my number one when it comes to my top tips. I know there’ll be hundreds of thousands of women out there who have had babies without a pump and of course it’s all completely possible but if you really want to hone in your control / know exactly how much you are giving yourself and have that constant record. If you have erratic sugars at the moment and don’t want to have to think about injecting all the time, over dosing etc, then a pump’s for you. I also find that being on a pump makes correcting much easier and more measured. For those interested I am on the Omnipod, which is a wireless device, but I know there are lots of better pumps out there which work in different ways and have other features. So best do some research before deciding which pump’s best for you

• Relaxation. I know this’ probably an obvious one but before I got pregnant, although I had been told I was likely going to struggle to conceive, I had certainly relaxed about it. It wasn’t at the forefront of my mind as I’d taken the gynaecologists words as gospel and  just assumed that we wouldn’t be able to get pregnant without intervention….. so my mind and body had probably relaxed about it which they say can, in some cases, can really help conception

• Focus. Focus on yourself, your baby and your story, don’t let other people’s experiences scare you and only focus on the positives as trust me, a positive mind during (and after pregnancy) is vital.

• Have a strong team. I literally am so lucky to have had the medical support I did. My diabetic nurse is honestly the most wonderful women. She gave me so much time and so much support and answered every question I had. My endocrinologist was great too, he was black and white which is exactly what you need during pregnancy, a no frills approach with only the mother and baby’s health as priority. My obstetrician was and always will be my hero, she couldn’t have been more encouraging throughout pregnancy and despite my occasional dramatic worries and a book (each time) full of questions (mostly from hellish posts I’d read online), she always guided and educated us on what was happening. She was the one that allowed me to go as far as I did carrying Florence and she was the one who ended up delivering her which on the NHS I know, is unheard of, we were incredibly lucky. Having a team you can trust will ensure you maintain focus during pregnancy and gives you confidence in yourself. I can honestly say I don’t think we will ever leave Wiltshire, as I finally feel very confident and happy with my medical care, and for someone with a high risk pregnancy, and life long disease, care is everything.

• Hypers / Highs. Don’t let the occasional high scare you. Of course, a high number is not what you want to see when you are pregnant. But, type one diabetes is a controllable disease, but you can’t warrant for not having the occasional high as life is life and absolutely anything and everything can affect sugar levels. I definitely had a few highs throughout pregnancy but I was never high for more than an hour as I was so stringent on testing.

• Test, test, test. To be honest I don’t think you can test too much when it comes to pregnancy, although you don’t want diabetes to rule you and you certainly don’t want to become paranoid about it. But I’m not going to sugar coat it (excuse the pun), being a first time mummy makes you paranoid enough let alone having to contend with T1D too. That’s the one thing I will say, check your blood glucose regularly, much more regularly than when you aren’t pregnant.. I probably checked too much, but I would say checking at least every 2 hours will ensure that if you see a high you can correct quickly.

• Ask questions. Don’t be afraid of pregnancy, other than the first 12 weeks of mine I enjoyed every second! I was so lucky to be able to love pregnancy as much as I did right up to the birth etc. I know I was lucky not to have any of the complications and to have a beautiful baby at the end of it who was the perfect weight with no birth complications and at 38 weeks gestation etc. It was so wonderful to realise that my diabetes had not affected her in any way and all the hard work and constant testing had paid off.

• Never compare yourself! Don’t let anyone tell you that pregnancy’s easy and don’t compare yourself to those who don’t have T1D because trust me people who don’t have it will never understand what you have to contend with! Don’t assume that just because one woman had a bad pregnancy that the same will happen to you. I made the biggest mistake at the start joining a diabetic pregnancy forum on Facebook and it was so so depressing and caused me to have so much anxiety over the what ifs that Ports made me quit it!

• Optimism. Other than the occasional moment of worry and anxiety I did remain optimistic and I didn’t dwell on the occasional high or let my T1D rule my days. I remained active the whole way through and I genuinely felt the happiest I have ever felt whilst pregnant. I didn’t plan the birth I just always said that what will be will be and so long as my baby and I were both ok it really didn’t phase me about having a C Section. You have so many other things to be thinking about, so don’t let the birth stress you out, at the end of the say so long as you are both ok then it really doesn’t matter. You have still grown and nurtured your baby to the end no matter how it pops out!

• Trust your body. Our bodies are all different, if you are trying to get pregnant or if you are pregnant then listen to your body, if something doesn’t feel right then seek help and medical advice. Never suffer in silence.

• Work hard.  This might be an obvious one as don’t we all have to work hard every day?! T1D is not easy and there really is no respite from it, but it certainly has made me more aware of my health and the importance of looking after me. I spent my teenage years and early twenties always been worried about what people thought of me and was constantly scared to admit that I had diabetes, which ended in several hospital admissions (mostly after a few too many vodkas, trying to fit in with everyone else). If I could go back I would have told my younger self that none of it matters, all that matters’ that you are doing the best for you. If people really have the time in their day to judge you then they are not worth a moment millisecond of your time. I’m not afraid to prick my finger in public or down a carton of orange juice just as I’m about to sit in the dentist’s chair. Rise above people expectations and judgements and focus on YOU! Sounds like I’m writing a bloody self-help book, doesn’t it?

• Focus. If you are considering pregnancy and your HBA1C’s high then set yourself a realistic goal and a time frame, certainly don’t expect things to change overnight. Don’t overstretch yourself and don’t do anything crazy as going from a high HBA1C to a low HBA1C can be dangerous and put added strain on your eyes etc. Speak to your endocrinologist and diabetic nurse and if you don’t have faith in them then move hospitals / seek new help! Focus on eating well, exercising regularly and imagining the end goal of having a beautiful baby.

If you want to read how I coped with Hyperemesis Gravidarum and type one diabetes then please click here. It certainly tested me on a level I have never experienced before. It was hard enough vomiting up to 40 times a day and constant nausea but having to balance it with not being able to eat or drink and my blood sugars was almost impossible. Having HG was not due to having T1D, any woman can get it at any stage of her pregnancy and it’s just sheer bad luck. It’s easy to forget how awful it was given everything that has happened to us since but the chance of me getting it again when/if I have another baby’s very likely.

Some people have asked whether I would have another baby? The answer is yes, I would love another   once I have allowed my body enough time to heal, get back to how it was and during that time enjoy every moment with Florence. I am 30 in a month and I realise that having T1D means that I need to consider completing our family sooner rather than later, especially as I have had T1D for 12 years now and despite my good control, I know that if I want another baby then the sooner the better especially for my long-term health.

If there’s something I haven’t covered then feel free to email me, but I hope you have enjoyed my story and that it’s inspiring rather than terrifying. Whatever happens, don’t let T1D hold you back from starting a family and becoming a Mummy, it really is the most rewarding and fulfilling job in the world. Just remember it’s your body, your disease, your future and that anything’s possible.

Please do feel free to comment with your story below to inspire others and of course share this with any one with diabetes that you know who is considering starting a family. I know it can feel daunting but I think it’s important to  be encouraged rather than deflated and worried. I am going to share my birth story and why I had a C Section etc very soon, so keep a look out!

As always thank you for all your support, it’s certainly been a journey.

E x