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

[BonaDea]

Peanut M&Ms - yum!!

Can I ask you about CGM please. I think you said you self funded - how did you go about sourcing it and organising fitting etc and what are the benefits (sorry if you already answered this above, I might have missed you response if you answered before). I'm feeling it might be a plan...

[Mylittlepuds]

Hi Bonadea.

Yes self funded. Dead easy - called Abbott they sent the Navigator system out the next day! Have a look on the website.

It was about £1000 for the monitor and the sensors are about £230 a month.

For me the main benefit is peace of mind! But it also lets you know how your body reacts to certain foods etc. It's expensive but I wouldn't be without it!

[dieciocho]

BonaDea I used to go to bed with a reading of 10 or so, that was pre-pregnancy and in the first 2-3 months. It meant that I didn't have a hypo in the night and woke up with a reading of 4ish.
Now that I need more insulin, I'll inject 1 - 2 units if my blood is above 9 at bedtime
If I wake up to wee, I'll test my blood.
Generally my breakfast readings are 4-8 now.

I was warned by consultant about arm injecting - advised not to during pregnancy.

[BonaDea]

Thanks littlepuds - I had a monitor for a spell once when I was having trouble figuring out what was going on with fasting blood glucose readings and it involved me not seeing any results for the week I wore it and then getting a print out from the hospital after it was all over. Pretty pointless really!

So, I assume you can just look at the monitor any time to figure out your levels? Does sound lovely not to have to keep pricking all the time... the initial outlay is not too bad, but the monthly expense of sensors does sound steep! Wonder if they are perhaps cheaper if ordered from the US?

Do you insert it / fit it yourself or do you need help from a DSN or something?

Sorry for all the questions!

[BonaDea]

dieciocho - sounds like you have found the right balance now... Although as you were before, I think my first step would have been to reduce the amount of background insulin before bed, to avoid that drop perhaps? It is trial and error, isn't it?

[Mylittlepuds]

No it's not like that. It displays a continual reading and also has a little arrow beside it saying whether you're on the way up or down, and if its a rapid accent or decent or just gradual.

There is a 10 min delay on it though, so if you feel hypo you need to test. I've found I've needed to still test a lot during pregnancy as the hypos can hit quite fast. I am a worrier though and I bet some people who have CGM rarely test. In fact pre pregnancy I'd gne from testing around 20 times a day to about three or four, it's just that background peace of mind if you're out and about. I have a toddler and its not always convenient to test do it's helpful in that way too.

I'm not sure about the importing from America thing. Never really looked into it. I believe you have to purchase them directly from Abbott so I don't think it's an option to be honest, and I don't think there's much difference in price.

I put in a PCT funding request which was knocked back (which is par for the course I believe) and my consultant is appealing. I suffer from bad anxiety and hypos so those are the grounds we're making the application. Also I was going through that many strips, and they're s expensive, it would be pretty cost neutral to the NHS.

You change your sensor every five days yourself. It's easy although the first couple of times you need to follow the instructions to familiarise yourself with it.

I really, wholeheartedly recommend it

[BonaDea]

Thanks for the input. Checked out the website and it does look really amazing - just to be able to look at the little monitor without the faff of actually getting the kit out, stabbing yourself blah blah, looks great. I can just imagine having it sitting on my desk at work and just being able to glance at it. And I guess for overnight it is brilliant.

I don't think I would have a hope in hell of getting funding - I have generally good control, no anxiety and have never had a really bad hypo... But the convenience of the thing sounds wonderful, I must admit.

Will need to have a chat with DH because he'd have to help me with this financially if I'm still to be allowed to buy nice maternity clothes and go out IYSWIM! (we're married but basically have our own banking arrangements other than joint things like mortgage, car etc).

[Mylittlepuds]

For work it's amazing. Is as close to feeling 'normal' as I've ever been. Yes so good for overnight and exercise.

It's a stretch for me and DH (it's a big monthly commitment) but I would never not have it now and DH knows how much it's changed my life.

[BonaDea]

I can imagine.

Can I just ask (finally) whether you looked into other options and why you went for the Abbott one in the end?

[Mylittlepuds]

Of course.

I'd tried the Navigator on a week loan from the hospital. I cried when they had to take it back - literally. The relief to have it was just amazing.

I liked the Navigator as it gives you 'up' and 'down' indicators and also a line graph of how your levels have been throughout the day. There are other cheaper ones but I don't thin they're quite as precise.

One word of warning - they've discontinued the Navigator in the US. I have been assures they have no plans to do the same in this country but you have to know so you can make your own decision.

I would ask your nurse if you can trial one for a week to see if it suits you. Some people hate them as don't like to be 'overwhelmed' with the information they provide. For me though I feel more comfortable the more info I have!

[BonaDea]

Thanks, this really helps.

A girl on the diabetes forum I'm on (she's currently pregnant with no 2) has one which is linked to her pump... but I'm not on a pump so not even sure that is an option.

I'm actually really struggling to find any comparative data or reviews on line. I mean, I know it's not exactly Which material, but you think that someone somewhere would have done an analysis of the pros and cons of the options...!!

[BonaDea]

Spoke too soon. Gary Scheiner - the guy who wrote that book I recommended above "Think LIke a Pancreas" - has done this review. It is probably a bit US focussed, but it might give me an idea! I'm becoming rapidly obsessed - god help Mr BD when he gets home from work tonight!

www.integrateddiabetes.com/cg_syscomp.shtml

[Mylittlepuds]

Ha ha! I managed to find quite a few reviews so happy hunting.

It's honestly fan-bloody-tastic and will be worth it's weight in gold once your baby is here.

I should be on commission!

[OxyMoron]

Sorry, interloper here, attracted by the title! My dd (4) uses the navigator cgm and it's been an absolute godsend!
I really rate the sensor technology, we find the readings very accurate, and the trend arrow helps so much.
I have seen comparative data on the commercially available systems in one of gary scheiner's letters. The navigater came 2nd, only one percentage point behind the new, next generation dexcom4 (is that available yet?).

If i couldn't get the navigator i'd go for a dexcom. Medtronic's old sof sensors don't score so well on accuracy (and are massive! 13mm). Their new enlite's are better, but still (imo) not a patch on navigator or dexcom. Also each enlite is about 65 quid, compared to 40 quid for our sensors.

Anyway, sorry for butting in, but i hope that's helpful info. I've read a lot aqbout sensors, have used them for two years and know folks working in sensor research.

And I'm also likely to be up most of tonight as dd is weirdly low, no matter how many carbs and how little insulin I give her. But I can see from the navigator that she's creeping up again. Poor lass was 1.3 after school. Haven't seen a number that low in years.

[BonaDea]

Hi OxyMoron - that really does help very much, thank you.

Incidentally, you are probably well up on what's hot and not in diabetes and might already be posting on a relevant forum (and I too promise I am not on commission for referring people to this forum) but this place is excellent: diabetes-support.org.uk/diabetesforum/index.php

The folks on there are super helpful and knowledgable about diabetes generally, and I know they do have quite a few parents of children with diabetes regularly posting in their 'parents of diabetic children' section! Anyway, just in case you ever looking for someone to share war stories with.

I hope DD is ok tonight. It is such a horrible feeling being low and I actually don't know if I've ever gone as low as 1.3!! Good luck getting her sorted - am sure she'll be right as rain soon enough.

[OxyMoron]

Thanks. She's back up, actually sky high now, but has been so low for the last 12 hours that I'm being cautious with the corrections. Poor thing. I just have no idea what it must feel like for her to have extremes like 1.3 and 21.5 to deal with, especially in the same day. We usually do much better than this! No idea what's caused today's trouble.

Thanks for the recomendation.

[SpottyTeacakes]

Being pregnant is making me really thirsty and I hate it because I automatically associate thirst with high levels. It confuses me another hypo at 4am is that my levemir that's too high?

[BonaDea]

Hi spottyteacakes - I guess there are too possibilities:

1. that the Novorapid you are taking with dinner is too much. However, if that is going to send you low, I would expect that to send you hypo within 2-3 hours MAX if injecting. So, if you have dinner at 7 and are ok by 11, I think you can assume that your Novo is ok (you should be aiming to be at 6-7 before bed, not too low)
   

1. If your Novo is ok in the evening, then yes, I would assume that your Levemir is too high for the evening and I would suggest that you reduce that by 2 units and see what happens. If you are changing Levemir, the advice is always to set your alarm for 3am (sorry, I know it is a pain!) and check what your blood glucose is doing. If it has crept up a bit, add another unit. If you are still dropping low, try reducing by another 1-2 units and re-test.
   

Good luck!

[BonaDea]

*that should have said TWO possibilities...

[Mylittlepuds]

Hi Oxy. I think ALL children with diabetes should have CGM. I can't imagine how hard it must be to be a parent of a type one diabetic. I hope CGM has made it that little bit easier in terms of peace of mind.

In fact I think all type one diabetics should have access to CGM as it's helped me so much. I take it for granted a bit now but when I first got the Navigator system it was like a physical weight had been taken off me.

I'm glad that you think the Navigator is the best one as that's the one I went for. I love it. The graphs and the arrows are great. I should imagine in the night it helps you so much

Hi Spotty.

I've been really thirsty. It's as normal symptom of pregnancy as the amount of blood in your body increases massively. It was more so for me in the early weeks but now at 10 weeks it's eased off. I never get thirsty when hyper which is a bit weird!

[SpottyTeacakes]

I'm 27 weeks now and wake through the night to drink, I don't think I was very thirsty to start with it's definitely increased

[BonaDea]

Called up both Abbott and the UK-based Dexcom supplier today to discuss pricing and supply.

The Dexcom 7 has now been discontinued in the UK and they are doing the new Dexcom G4. The unit price is now more expensive than the Navigator, but only by £25. They also say their sensors are licensed for 7 days but in practice will last 10-14 days, which if true would make it cheaper to run. HOWEVER, the transmittor doesn't have batteries, it has its own limited power source, so you have to buy a new transmittor every 12 months costing £275. You also have to recalibrate it every 12 hours, whereas the Navigator is 4 times over 5 days, which seems better.

So, all in all I'm defintiely thinking the Navigator is the way forward. It has generally better reviews online, too (I think...).

Littlepuds - agree everyone should have this on the NHS. CGM on average reduces Hba1Cs by 1% without any other intravention, so the cost savings on neuropathy and retinopathy treatments for the NHS would presumably be significant. I can also just imagine the sensation of a weight being lift. The idea of it is so attractive to me right now.

Discussing with DH tonight!

[dieciocho]

Spotty I'm ridiculously thirsty these days and always think I'm hyper, so test my blood, but it's fine.
In my first trimester I was even admitted to hospital with dehydration and had to have a drip!
So, now I try to drink at least 2L of plain water (plus other drinks) each day. I would drink more, only I'd then be up throughout the night!

[Mylittlepuds]

Bona - prior to pregnancy it also cut out ALL hypos. Considering that they can be life threatening this is a major factor I reckon. Sadly now I'm preggers they've become a regular feature again! But that's the nature of the beast.

Also with the Navigator there are times when one of the sensors has stopped working for one reason or another half way through the five days. Abbott has ALWAYS sent out a replacement (sometimes two!) free of charge. Considering they cost £35 it's comforting to know they do this. They have really been fantastic. Being very skeptical by nature I thought they were just after my cash initially, and would then just dump me. They haven't. I also had a few problems with the transmitter which they replaced without blinking. Considering they cost £450 I was surprised they didn't investigate further. I still have an 'extra' one that they didn't ask for back.

[SpottyTeacakes]

To be fair I don't drink enough anyway! Having a day of hypos today I think it's because I haven't had any small snacks inbetween meals when usually I'm constantly eating!