5 weeks pregnant, still waiting for referral

[jd89]

Hello so I recently moved up to Scotland from the midlands. I’ve got a GP here but still waiting for a referral to a diabetes clinic. I recently found out I’m pregnant and am a little worried as I have no DSN to call…
I’ve been managing my BG ok during the day but some nights I’ve been waking up to find that my BG has shot up shortly after I’ve fallen asleep and coasted at 16 until I wake up (usually around midnight). I have the libre 2 but unfortunately the alarms haven’t been going off. I’m concerned about these high levels because I understand the importance of strict BG control right now. I don’t trust the libre while I’m pregnant, I’ve heard that most women get the dexcom but I don’t know how long it will be until I get an appointment. My GP has been trying to get me an urgent referral but the hospital has said I’m on a waiting list.
Should I buy the dexcom starter kit and hope that I’ll be seen within the next month?

I feel ok about adjusting my insulin but the night time highs are really worrying me as they’re not every night (about 2 or 3 nights per week like this) so I don’t feel like I should increase my basal rate (I’m on the pump)

 

[rebrascora]

Can you ring the local hospital switchboard and ask for the telephone number of the diabetes clinic helpline and then ring and leave a message explaining the situation and that you are concerned. Hopefully someone will ring you back and it might help to speed up your referral.
Afraid I can't offer any personal insight as not gone through pregnancy with diabetes, but perhaps @Inka might have some experience she can relate to your overnight highs.

 

[Leadinglights]

Welcome to the forum. and congratulations on your pregnancy. In the early days there are going to be lots of changes to your body which are going to impact on your diabetes management and a lot to learn. No experience myself but there are a few others who have been through or are going through your experience so hope fully they will chip in. There is a pregnancy section on the site which may help if you haven't already seen it.

 

[rebrascora]

There is a pregnancy section on the site which may help if you haven't already seen it.

??
It would appear that this has been posted in the pregnancy section....

 

[Leadinglights]

??
It would appear that this has been posted in the pregnancy section....

Oh I see, I always look in What's new rather than the different forums, I'm easily confused.

 

[jd89]

I’ve pestered my gp a lot this week and she has rung them up on my behalf to say it’s urgent. I received a letter from the hospital on Friday to say I was on a waiting list and critically ill people will be seen first so I’m not sure how long I’ll need to wait. Do you think I should ring them anyway?
I was wondering if I should get the starter dexcom kit (1 months supply) just for peace of mind, at least to cover me during the night until I get a hospital appointment. I really need the alarms to wake me up when my BGs start to spike as my libre doesn’t currently do that.
I’m not too confident I know how to adjust my basal and ratios by myself either, it’s making me very anxious whenever I eat a meal.
Should I have already seen someone by now or is 5 weeks still quite early?

 

[Inka]

Congratulations on your pregnancy @jd89 🙂 I have Type 1 and three children. I was told to phone my diabetes hospital clinic as soon as I got a positive test, but I can see you’re having trouble. Personally, I’d phone the clinic myself and ask to speak to a DSN. They should have a pregnancy DSN but any will do. Explain your situation and get advice.

Have you been taking the high-dose folic acid? That’s a priority. If not, get that from your GP asap.

I had highs in early pregnancy. As you’ve found, they’re unpredictable. I have a pump and I did make some moderate changes to my basal rate to reduce the highs but these changes were all daytime. I can understand your reluctance to change your nighttime basal. I wouldn’t. I’d just correct. You’ll find pregnancy is a time of lots of corrections!

I fingerpricked for my pregnancies - lots! I set an alarm to test each night around 2am. However, as you’ve got the Libre, you should prioritise sorting out the alarms and they’ll be an absolute boon. Why aren’t yours working? Have they ever worked?

I thought I remembered you so I looked back and can see you are taking folic acid - that’s excellent. Can you think of any possible reason for your nighttime spike eg a new cannula site? Stress? If not, it could simply be the pregnancy. I started high but soon the hypos kick in, and they can be very vicious. I don’t think I’d buy a Dexcom. I’d try to sort my Libre if it was me.

 

[trophywench]

I don't have a clue about what's what in Scotland, but - is there any reason why you can't phone your previous clinic in England and just say Help! ? if you can't contact a clinic where you are now ? OK they may say they have no access to your NHS records now - but surely to heaven they shouldn't refuse to try and help?

 

[rebrascora]

I was wondering if the night time spikes could be due to slow release carbs like pizza or creamy pasta or lentils etc if they weren't happening predictably?

 

[Pigeon]

Have you got a booking in appt with your community midwife yet? Mine offered to book me in for the early scan, although my dsn had already sorted it. Might be another route to try.

Congratulations, by the way!

 

[Pigeon]

Also, about the dexcom, I got this recently, I wore it with Libre 2 for a few days and found general agreement, I had the Libre 1 through my 1st pregnancy and was fine. So I wouldn't spend your own money on it as I think they're very similar, just confirm with finger pricks several times a day

 

[jd89]

So for my evenings meals I’ve been eating early (around 5pm) so that if there are any problems I can try to catch it before bed. I have around 40-50g carbs in my meal and I’ve been having things with beans or lentils for carbs. The annoying thing is on the nights when I spiked, I had gone to bed with BGs of 6.4 and 5.6 and then shortly after falling asleep they’ve shot up. On another night that week I had 3 lows in one night so it’s very unpredictable.
My libre used to alarm if I went high, but only when I set the high glucose alarm at 17 or above. And even then it wouldn’t go off every time. I now have it set much lower (10) and I don’t think it can catch it. I rang libre customer care but it wasn’t sorted out, all they said was the make sure that my phone was up to date (which it is) and suggested it may be an error with my phone. But I don’t think it is!
I have resorted to setting an alarm every 2 hours for tonight but this really isn’t ideal
I’ll try ringing my previous clinic on Monday and also the one I’ve been referred to. I have an appointment with a midwife at 9 weeks, I explained my situation to them but they won’t see me any earlier

 

[Inka]

Do you have a Libre reader @jd89 ? You could try that for the alarms. The only alarm issues I’ve seen on here are from people using phones, so it’s worth a try (if you haven’t already).

Don’t set alarms for every two hours at night. You need your sleep. Also, I found that restless nights put my blood sugar up so too many checks in and of themselves might mess things up.

It’s good you’ve got a midwife appointment sorted. I saw both my diabetes clinic and a community midwife. The midwife knew very little about diabetes and didn’t get involved at all with that. She did the usual pregnancy checks and that was good. My first appointment was at the hospital clinic and I was approx 8wks. I declined a scan then, and had one at 12 weeks. So, even if there’s a small delay with you getting to a clinic, it won’t affect much at all. When I phoned to report my pregnancy and make my first appointment, I was able to speak to a DSN then and there for some blood sugar advice, and that was perfect for early pregnancy and reassured me.

Good luck with the phoning on Monday 🙂

 

[jd89]

I don’t actually have a reader for the libre 2, I’ll ring up on Monday and see if they can send me one and I’ll try that.
Today has felt like my insulin really hasn’t done much at all! I’m having to correct 2 or 3 times as much insulin as normal. I’ve currently set my pump to give 30% more basal over night which seemed to do the trick last night. Will I keep needing to increase this more and more over the coming months? I’ve never done this much insulin before, it’s already a lot compared to my usual doses

 

[trophywench]

More in the first trimester, less in the second and up to mega amounts in the third! That's very general of course but the truth is - your body needs however much it needs when it needs it - and it underlines how bloomin complicated and fantastic the body is to just do it all automatically without anyone noticing at all, when you don't happen to have diabetes.

 

[Inka]

I don’t actually have a reader for the libre 2, I’ll ring up on Monday and see if they can send me one and I’ll try that.
Today has felt like my insulin really hasn’t done much at all! I’m having to correct 2 or 3 times as much insulin as normal. I’ve currently set my pump to give 30% more basal over night which seemed to do the trick last night. Will I keep needing to increase this more and more over the coming months? I’ve never done this much insulin before, it’s already a lot compared to my usual doses

@jd89 The Libre reader should be a godsend. Early pregnancy is a time of highs sometimes but at around 8weeks the hypos start. I stress again, they can be fierce and unexpected. Luckily you’ll have alarms so you should be a lot better off.

From about 20 wks the insulin resistance begins. It’s gradual at first as you notice the hypos ease off, but from approx 25 weeks it ramps up, and does another big ramp up at 30-32 weeks.

Taking far more insulin than normal late in pregnancy is very normal. By “more than normal” I’m talking *big* increases. Although it seems weird, I took it as a good sign - that all the hormones were working properly and well.

As an example, I ate the same breakfast most days and my bolus changed from 5 units pre-pregnancy to 19 units by the end of pregnancy! My evening meal ratio changed from 1:11g to 1:4g by the end of pregnancy, but that’s nothing compared to one lady whose changed from 1:10g to 1:1g (no, that’s not a typo).

So, to answer your question, in general the IR doesn’t just keep increasing like a hill. There’s a common pattern. It usually disappears for quite a number of weeks (hypo period), and doesn’t really kick in properly until the latter half of the pregnancy.

During the hypo period, I could eat a fair amount of carbs without insulin at certain points of the day. I cut my basal and cut some of my ratios.

After delivery - literally just after delivery - your basal and ratios need to be set back to normal. It really is that quick. Often you’ll find that you need less insulin than normal. I put mine back to normal but very soon cut my basal by 25% and ate loads with little effect on my blood sugar. It honestly felt like I was cured. Pity we can’t make that last!

 

[jd89]

@Inka how did you adjust for more insulin (how did you know you needed so much more)?

I have a little update, I finally have an appointment with diabetes obstetrics next Tuesday! and I have a libre 2 reader on it's way in the post 🙂

 

[Inka]

The adjustments were gradual @jd89 I was aware of the IR because my blood sugar seemed more prone to go high. Hard to explain, but when the IR kicks in you’ll feel it, especially in the third trimester. I suppose it’s a bit like when you’re not pregnant and you know your basal is wrong. It feels ‘off’ and like control is more of a fight.

So, for example, if I ate my normal breakfast and was higher than usual for 3 days in a row, i’d increase my bolus insulin. The 3 days ruled out any flukes or anything else affecting my blood sugar. I didn’t leave my blood sugar run high on those 3 days. I corrected carefully to stay in range.

Basal was more of a ‘feel’. Overnight was easy to sort as it was clear if I was too high, but for daytime highs, I tended to get a feel for if it was bolus or basal. Later in pregnancy, I’d often adjust both - a bit more basal, a bit more bolus. That’s basically what pregnancy is - testing, nudging, correcting, a tweak here, a tweak there. Just whatever you need to stay in target as much as possible, and to correct promptly if you’re not in target.

If I saw an approaching step up in insulin resistance and felt my sugars fighting me, I’d often do a cautious basal increase and see how that went.

Think Like A Pancreas has a very small, simple graph showing insulin needs during pregnancy, and I found that very helpful as it helped me anticipate what was to come.

 

[jd89]

I now have the freestyle libre 2 scanner!
You were right it works so much better with the alarms than my phone 🙂
I also had my first appointment with the DSN this morning, it went well and I’m back in 2 weeks. Small adjustments to my pump, but BGs have started to settle down already

 

[rebrascora]

Great news!