25 Years

On 14 August 2016, it will be 25 years from the date I was diagnosed with Type 1 Diabetes.

Twenty. Five. Years.

I was nine years old; I’d never heard of this “Diabetus” thing, and suddenly I was told that I couldn’t eat sweet things any more. The injections didn’t bother me – I was old enough to understand that without them I’d get sick again – it was the ice cream! I didn’t even have a particularly sweet tooth, but the profound loss that I felt having that freedom taken away surprises me even now.

My memory of that time is a little hazy, partly because I was severely DKA (somewhere around 43mmol/l!), and partly because it was so long ago. I’d been ill for months and seen various doctors, but in the end it was my Dad who put the puzzle together from his own hazy childhood memories of his sister’s diagnosis.

I was in hospital for two weeks. They told me how to draw up and mix the insulin from each vial, how much, how to flick the bubbles away, and how to inject. Twice a day, Actrapid and Protophane, with three meals and three snacks a day. All of the other information – understandably – went to my parents, and my poor Mum did her best to look after me whilst encouraging me to look after myself as I got older.

I’m not sure how much my Mum actually understood, and how much was lost in translation. I vaguely remember her weighing my food in the beginning, and always having to eat far more than I wanted to. But by the time I was an adult and out looking after myself the idea of carb counting was just a distant memory – and, dangerously, the link between what I ate and my insulin dose was alien to me! I actually thought it was just like any other medicine – you take it a few times a day, and it does its thing.

Fast forward 15 years; at a guess, I’d probably spent half of my Diabetic life DKA, but never been treated for it. Over time, the BG threshhold at which I became ill got higher, and I’d learned how to hide it from my family. I can’t remember there actually being any real turning point, but around ten years ago I started having massive, crashing hypos, which tells me my general BG levels must have been lower as for years before that hypos were rare. I still had no control though, generally still running higher than desirable.

Eight years ago, I moved to Fulham, South London, and was referred to the local hospital. I am convinced that these guys saved my life. Early on, I had an appointment with a junior doctor of some form; she was really blunt and pretty rude, and asked question after question that I just couldn’t answer. I felt that I was being judged, and ended up in tears. Within minutes, I was surrounded by most of the high-level team – the two top consultants in the department, the dietician, the head DSN. They asked more questions, but in a nicer way, and made a plan. Over the following months/years, every appointment was with one of those consultants – who remembered me every time – until earlier this year, when I was finally ‘downgraded’ (understandably, given the improvement in my control) to someone less senior. The Dietician and DSN team were always just a phonecall away. I was offered a pump (I didn’t like the idea so declined), and even a pancreas transplant (again, I declined – the transplant specialist didn’t exactly sell the idea).

Five years ago, I got to do DAFNE. It changed my life. For the first time, I had the knowledge I needed to manage my condition; I knew how to calculate my insulin dose, how to monitor and adjust my background/basal dose if needed – how to treat a hypo without ending up DKA! At my three-month review, my Hba1c was below 10 for the first time ever, and with further tweaks it has been as low as 6. I’m still far from perfect – I think that after the DKA blur of my teen years I tend to err on the side of a lower BG, so hypos are a long-running problem, but I’m now equipped to make decisions and changes when they are needed, rather than waiting months to check with my consultant at my next appointment.

The most important thing to come out of all of this is my daughter, a perfect 1yr old, born without major issue at a very non-diabetic 6lb 6oz – which I attribute directly to my fabulous Diabetes team, the knowledge and support they’ve given me.

To say that I’ve learned a lot in the last ten years is an understatement. Even aside from the general management of my condition, I’ve learned the incredible power of a supportive hospital team. I’ve learned that I can manage my condition. And I’ve learned that there is hope – I can (and intend to) be the first T1 in my family to see old age.

I didn’t fight for most of my 25 years, but if effort counts for anything, I’ve more than made up for that time. I know that I may encounter problems in the future because of it, and I’m on the lookout for any signs so that they can be treated/managed or even reversed.

So here’s to the next Twenty. Five. Years!

The Daily Battle

The main thing I’ve stuggled with in recent years is hypos. For that reason, I’m reluctant to make big changes to my dosages when fighting recurrent highs for fear of getting myself into yet another whirpool of lows. Unfortunately, this means it takes me longer than necessary to find the right dose.

I’ll add at this point that I split my Levemir, taken at 11am and 11pm, and I take a relatively low dose (generally less than 20 units in total per day). At the start of this story, I was on 8 units for both, meaning 16 units in total.

I’ve been struggling with overnight rises in my blood sugar for the last few weeks. My usual routine is to monitor for a few days to check for a pattern, adjust my basal dose by one unit and monitor for three days, before looking at whether further adjustments are needed; this is because Levemir (my slow-acting insulin) stays in my system for about three days.

If I’m waking up higher than when I went to sleep, there are usually three possible reasons:

• My basal dose is too low, meaning a rise in BG overnight;
• My basal dose is too high, meaning I’m going low overnight and then rebounding when my liver dumps glucose reserves into my system;
• Whatever I ate the night before has messed with my levels (pizza and pasta are good examples – they take longer to break down, meaning I go hypo in the short term, treat it, and then end up higher later.

This isn’t a new problem for me, so I started my monitor/adjust routine. The morning BGs got higher with a raised dose – suggesting hypo rather than hyper overnight. So I adjusted again, this time one unit below my original dose (-2 units, in case you’re not following!). The morning BGs got even higher, suggesting I now didn’t have enough insulin. So apparently what I needed was somewhere between my new current dosage and my original dosage – a difference of one unit – but my insulin pen only gives whole units.

As I’m such an expert at this game, I already know that in this scenario, raising my 11am dose will often help. On paper Levemir takes about 4-5hrs to start working, and keeps going for about 18hrs, but for me it seems to taper off about 15hrs after injecting. The way I view this is that a one-unit increase at 11am equates to about a 0.5 unit increase at 11pm, although this may of course not be accurate.

So I made my adjustment – I’m now on 7 units before bed, and 9 units at 11am.

Problem solved. For two whole days!

On day three, it all goes wrong. I’m again high in the morning, so I take my fast-acting insulin to bring my BG down. I’ve done DAFNE, and I know how Humalog affects my BG, and therefore know exactly how much to take. But within a couple of hours, I’m crashing from 15+ to hypo, and its the horrible diving type of hypo that sneaks up on you quickly. I catch the first one, wonder whats going on, and make a mental note to monitor for patterns (my mantra!).

Suddenly, I’m spending at least 60% of the day hypo, at any time of day, and the remainder high because I’ve got so desperate to climb out of my hypo hole that I’ve taken on too much sugar. Aside from these episodes, I’m also having sudden climbs in BG without any clear reason, and no amount of monitoring, recording and comparing results gives any indication as to what I’m doing wrong.

I’m on maternity leave, so thankfully I don’t have to worry about doing my job at the same time, but I do have the far more terrifying prospect of a nine-month old baby being left on her own whilst I’m passed out in the corner – or worse, that I might somehow accidentally hurt her whilst hypo. I have pretty good hypo awareness, so I notice most of the lows, although some I’m convinced have been going on for a couple of hours before I click. The line comes when I wake up at gone 6pm to find my husband is home; he found me passed out on the sofa with baby (thankfully asleep) at 1-point-something; the last I remember, it was 2pm and I was playing on the floor with my daughter.

I’ve heard about Freestyle Libre, the magical machine that not only tells you what your current BG is, it also tells you whether its going up or down, and what it’s done for the last eight hours. It’s relatively new, so not available on the NHS, and will cost about £100 per month, but is an invaluable tool – for example, it would tell me within 24hrs why I am high in the morning, rather than experimenting for a week or two. I’ve already marked it as a “maybe one day…”, as I’m about to start paying most of my wage out in nursery fees every month, and don’t know that we can afford it. But given my current instability, and no discernible reason as to what the hell is going on, I’m taking the plunge…

Moving On

This site was originally created to chart my pregnancy, but as my daughter is now nine months old I thought it time to expand my blog to cover the day-to-day highs and lows (and general juggling) of Type 1 Diabetes. Stay tuned for posts going forward…

Introduction

I’m a 33 year old type 1 Diabetic; I was diagnosed at the age of 9 so most people would expect me to have perfect control by now. I don’t, because as any type 1 will know, it’s an ongoing battle. Any small change in hormones, weight, diet, routine, sleep pattern or even climate can throw it all off balance for days or weeks on end. However, I do have significantly more control than I had as recently as five years ago, with a far greater understanding of my condition and how to go about correcting those blips when they occur.

In 2012, I took the DAFNE course at Chelsea and Westminster hospital (C&W) in London, and to say it changed my life is more than an understatement. In the space of a week, I went from having literally no control, veering between highs of 20.0+ mmol/l and crashing hypos of 2.0 and lower, to reasonably steady control. It gave me the knowledge and confidence to calculate and adjust my own dosages as required, without feeling that I had to wait a couple of months for my next hospital appointment to consult a doctor before making changes. It also taught me the importance of carb counting, which I vaguely remember from when I was diagnosed, but which fell by the wayside long ago.

The freedom this course gave me was incredible, and for the first time ever I began achieving hba1c results of less than 10, and within a few months, less than 8. My most recent result (six months post-pregnancy) was perfectly within range, at 6.4. I cannot recommend DAFNE enough, and I honestly believe that the course, in combination with the support and understanding of the staff at the C&W Beta Cell department, has added decades to my life. Prior to DAFNE, having struggled for years and failed to find any control, I had resigned myself to the idea that I would never reach old age, and that by the time I die I would be a blind amputee with various other health issues – but whilst some of those issues may still arise due to my long-term lack of control, I now have far more optimism about my future.

I would hope that in the relatively near future, every type 1 Diabetic in the country is able to take the course, as it really would solve (or at least help prevent) a lot of problems longer term.

So anyway, I have always wanted children, but it doesn’t take much research to discover the serious complications that can result from an uncontrolled Diabetic pregnancy, which go far beyond the mere risk of having a huge baby. These terrified me, so I put off having children for years, and then once I felt in control I compulsively planned and researched in order to minimise the potential risks to my health and that of my child.

Except there are no books, websites, or other resources which can tell you what to expect. All they can tell you is that it’s unpredictable; that you can swing between hypos and highs for no apparent reason, and as your hormone levels change throughout pregnancy your insulin requirements can rise and fall significantly. Oh, and it’s different for every person. Getting it wrong can result in developmental defects, ongoing health problems for your child, pre-eclampsia, failure of the placenta, miscarriage, stillbirth and more, so the pressure to get it right is immense; and the lack of any tangible advice beyond “control your blood glucose levels” was, for me, the biggest source of stress that I’ve ever encountered!

The only written guidance (for want of a better word) that I could find was a series of Mumsnet discussions, where a group of Diabetic women had gone to discuss the ups and downs of their pregnancies and seek advice. A Mumsnet discussion board has a limit of 1,000 posts, and this discussion was spread over four boards because they kept running out of space. I spent days ‘eavesdropping’ on this mammoth conversation, as these poor women struggled day-to-day to control the uncontrollable, and banded together to support each other and make suggestions when advice was asked for. Ultimately, all had happy, healthy babies, and the thread ended (or at least I couldn’t find a new one). If any of those ladies should ever read this, I would like to apologise for intruding upon your conversation, but also to thank you for it; I tackled my pregnancy without Diabetic peer support, and at times I wished I had access to a group like yours. Funnily enough, I have somehow now acquired local Diabetic ‘mum friends’, so if I do it again I will have that support network to hand.

When I eventually got pregnant, I kept notes so that I could go back – either for a later pregnancy, or just out of interest – to see what had happened, and when. Knowing that I had written it all down, and that I had struggled to find anything which gave me any idea of what to expect, someone suggested I put it online as it may also help somebody else – or at least provide them with some reassurance that they are not alone in their struggle. I’m in the UK, so it may be that different processes/medications/etc are used where you are (I know in the US, you use a different measurement for blood glucose, for example),  but hopefully some of the information I provide here will be useful).

Plus, whilst I could easily lose my notebook, once it’s online, I’ll always be able to find it.

So here goes…

Me and My Diabetic Pregnancy

I became a patient at C&W eight years ago when I lived in the local area, and whilst I have moved away since then I chose to keep my Diabetic care there given the complete turnaround in my control since my initial referral.

When I was planning my pregnancy, I visited their ‘preconception clinic’, and once I was pregnant I chose to keep my Diabetic prenatal care with them, whilst having my scans at our local hospital; we used those as the check-in points throughout the pregnancy as that was the hospital where baby would be born. This worked for me, as I was still working in London, meaning a couple of hours out of the office for each appointment, rather than most of a day out for an appointment at my local hospital plus travelling time into London. It also meant continuity of care for me, with the people I trust most to advise on my condition. As it turned out, the Diabetic prenatal team included the fabulous Miranda and Emily who had taught me all I needed to know on the DAFNE course – special thanks to them.

Turning to the actual logistics of my pregnancy, all of the information I’d found online suggested that because Diabetics have bigger babies, and because complications are more common, the majority are born by C-section. I did not want a C-section but took it as a given that I would have to deal with it when the time came. As it turns out, it depends on the local policy but most places will now encourage a natural birth unless there are special reasons for a C-section.

In terms of insulin, I use Humalog as my fast-acting, with a split basal dose of Levemir every twelve hours. Having done DAFNE, my Humalog dosages depend upon what I’m eating or on my BG at the time (on a 1:1 DAFNE ratio, meaning one unit of insulin for every 10 carbs), whilst the split Levemir dosage allows me more flexibility than the one-dose regime as I tend to need more at certain times than at others.

As my pregnancy was carefully planned, I’d been taking a high dose folic acid tablet for a while before conception, and I’d also stopped taking certain tablets before trying to conceive. At twelve-weeks pregnant I started taking dispersible aspirin, which is thought to help protect the placenta in a Diabetic pregnancy, and I was also prescribed a calcium and vitamin D supplement as my bloods indicated that this was a problem area.

From fairly early on, I went to the Diabetic prenatal clinic every two weeks for monitoring, bloods, usually a ‘bonus’ scan (but no pictures to take home), and quite often a ‘song’ from baby on the Doppler. I had ‘official’ scans at 8, 12 and 19 weeks, and then every two weeks from 28. From 36 weeks, my local hospital moved from fortnightly scans to twice-weekly CTG monitoring.

General tips on Diabetic Pregnancy

If you are Diabetic and considering pregnancy, check whether your Diabetes department has a preconception clinic and go along to make sure you’re as prepared as possible. And as soon as you know you are pregnant, see your GP to get into the system. If you plan to keep your Diabetic care at your local hospital, that will be enough to put you on their radar, but if like me you want to go somewhere else for Diabetic care, find out how to self-refer as early as you can, so that they are monitoring you as soon as possible.

The important thing I would like to point out here is that it really is your choice where your care is based; I spread mine between two hospitals because it worked for me, but if I had wanted to I could have had my baby at C&W (even though I now live outside London). The key thing is to figure out what is best for you, and you can then refer yourself (usually online via their website) to the hospital of your choice.

Like me, you should ask for a high-dose folic acid prescription before conception, and expect to be put onto aspirin at twelve weeks. Other supplements may be necessary, depending upon the many blood tests you’ll be sent for!

Be prepared for the increase in insulin sensitivity, which apparently can start from around seven weeks; the key is to record blood glucose results in combination with carb intake, and use this to figure out what reduced dosage you should be taking. As a general rule, one unit of insulin will lower your BG by about 3 mmol/l, and 10 carbs will raise it about the same. So if you eat 40 carbs, take 4 units to cover it and then have a hypo requiring 20 carbs to get out of it, you’ve taken twice as much insulin as you needed.

The only way to find the right dosage for you is through trial and error; in my opinion you’re always better off taking too little insulin than too much, and if you go a little higher today then add an extra unit tomorrow until you find a balance. Yes, ideally you don’t want a higher BG in pregnancy, but as long as you are monitoring and correcting where necessary in the course of a day then a few days of running slightly higher in places would not be the end of the world.

At the same time, rest assured that a hypo in itself will not harm your baby; there is of course a risk to you, and in turn to the baby if you have a fall or injure yourself, but a spell of low blood sugar does not have any effect on its growth/development. I prefer to avoid them where possible, hence my comments above, but my point here is that if you’re not able to avoid having a few hypos, that’s okay.

From around 18 weeks (21 for me), insulin sensitivity drops, so once your BG levels start increasing you’ll need to increase your insulin intake to match. For me, the increase wasn’t huge, but I have read stories of people taking up to ten times the amount of insulin for this stage of pregnancy.

At some point (I believe around 32-weeks), baby starts producing their own insulin, and you can also benefit from this meaning your insulin requirements again fall – although I can’t say I noticed any change.

As a Diabetic, you will not be allowed to go to full term; my hospital told me from the start that my baby would be delivered between 36 and 38 weeks, although I know friends who have been told 39 weeks at other hospitals. What I was never told, but read somewhere (possibly on Mumsnet) is that if you have to reduce your insulin dosages toward the end of your pregnancy this could be an indication that the placenta is starting to fail – keep this in mind, and if you have any concerns make sure that your raise them at your next appointment.

It’s also useful to know how your particular insulins work. I use Levemir and Humalog, and I know that Levemir takes 4-5 hours to begin working and then continues to do so for about 18 hours but does still have an effect for a couple of days, whereas Humalog takes about half an hour to work, keeps going for 4-5 hours and then stops. This knowledge often makes it easier to pinpoint the problem dose when I go high or low; I take my Levemir at 11am, so if I hypo at 2pm I know if is my lunchtime Humalog that is too high because the Levemir hasn’t kicked in yet. Similarly, if I hypo at 6pm and I haven’t eaten since 12pm, it can only be the Levemir.

Levemir stays in your system for about three days, so if you have adjusted your dose, wherever possible I suggest waiting three days before adjusting again; your BG may just come into line in that time, meaning further adjustments will throw you off again.

Week Five

I take a test, and get that coveted positive result when I am about five weeks pregnant (confirmed at scan later). Alongside the immediate elation is an awful sense of responsibility, duty, and ultimately dread. I compulsively check my blood glucose, calculate carbs, and record everything in an Excel spreadsheet because that’s the only way I can track so many variables. It gives me a sense of control in a world where any wrong step could result in disaster.

I see my GP within a couple of days, and am referred into the system.

The internet says baby is the size of a sesame seed, and that it resembles an alien life form; we therefore affectionately name him or her ALF, like the TV character.

Having adjusted my Levemir dosages the day before I found out I was pregnant, I am on 7 units in the morning, and 10 in the evening at this point.

Week Seven

Started having morning sickness, but no other real physical sign of pregnancy. Have read somewhere (although I couldn’t tell you where now) that insulin sensitivity increases at around 7-8 weeks, but thankfully this hasn’t yet kicked in.

ALF is the size of a blueberry.

Weeks Eight to Eleven

My first of many scans – one of the few perks of being Diabetic – puts me at exactly eight weeks gestation; this matches my estimate, and I’m over the moon that so far my Diabetes doesn’t seem to have had any adverse effect.

ALF is still just a blob on screen, without any discernible features or limbs.

Insulin sensitivity well and truly kicks in between 8 and 11 weeks, with hypos pretty much every time I take my fast-acting insulin after eating. As a result, I reduce my dosage to about 60% of what it has been (meaning a 0.6:1 ratio), but as it is not possible to take 0.6 of a unit, the challenge is in eating the right amount of carbs to equal a round number of units (100 carbs would be 6 units, 50 carbs, 3 units), or where that isn’t possible, I have to take an educated guess as to whether to go one unit above or below what I need to take.

Hypos have not been eliminated, but they are reduced.

Week Twelve

Our 12-week scan shows that everything is normal. We watch as this tiny creature dances and kicks on screen, and my immediate feeling is relief: that the random high BG readings I’m still sometimes experiencing, have not caused any visible defects. However, the measurements taken at this scan (exactly four weeks after the previous scan) date the pregnancy at 12+2, meaning I’ve gained two days, and this terrifies me; is this my doing, or is it just a more accurate scan than the previous one? Only time will tell.

At twelve weeks, ALF is the size of a lime.