Disagreements with diabetic nurse – second opinion needed

[J-a-n-e]

I’m pregnant (about 9 weeks) and I’m on a pump for 1 month.

When I’ve just started using a pump I had really high sugar levels (more than 17 every morning). Due to some advises, links and help from this forum I was able to sort it out (thank you very much to everyone who answered and commented), and now my sugar levels never more than 10. I’m happy with it and feel good.

My diabetic nurse thinks it’s not good and for the last several weeks is trying to raise/increase my doses to reach the targets (5 - in the morning, 7 – 1hrs after meal, 6 – 2hrs after meal). For example my morning basal dose (from 6am) is 0.9 p/hour, my sugar levels (at 9 am) are from 3.3 (sometimes I wake up with hypo) to 7. She is saying that my target is 5 and 7 is too high and wants to increase it by 0.1 p/hour. I know I will have more morning hypos if I do this.

Every time she increases my doses I have lots of hypos (more than 5 p/day). She is saying that to see the result I must stay with new doses for at least 3 days and really angry with me than I lower my doses after 2 days constant hypos (more than 5 p/day). She is saying that I’m having hypos not because she increases my doses (with my present doses I only have 2-3 hypos a week), but because I’m pregnant. She is saying that I’m really harming my future baby because my insulin levels do not meet the targets. She is saying that it’s absolutely normal for a pregnant woman to have lots of hypos which will not harm the baby at all, and if I have lots of hypos I just need to take a juice or Lucozade. I’m fine with hypos during the day, but during the night I experience deep hypos - when I wake up I’m normally not able to raise my sugar level for 1 hour, 1 cartridge of juice is not working - normally I take 3 or more…

So the questions are:

Do hypos harm my future baby?
Is it normal and absolutely safe for a pregnant woman to have lots of hypos?
If you know some good links re managing diabetes on a pump with pregnancy please give.

 

[Brunneria]

@azure I think this is one for you!

Sorry I can't contribute more than this, but it really isn't something I know much about - except to say that yes, raised blood glucose can definitely harm babies, and increases risk to them significantly. But I simply do not know the numbers and the risk factors.

 

[1Sarah1]

Hi I've gone through 2 pregnancies on a pump-first a singleton and then I had twins 3m ago.

First I was told that low sugars don't affect babies but high ones defo do. It's more risk to mum-you can lose hypo awareness whilst pregnant and obviously the implications of this are significant. I did have a lot of lows because I wanted babies to be ok and it's a very fine line to get your sugars like that.

What I did was to test all the time. Including setting alarm and testing twice a night. Have you checked your basal rate through the day and at night? I have about 10 different basal rates on my pump to try sort morning blood sugars. Are you carb counting and matching your units can be different at different meal times. I was also advised to have low gi diet so not to spike sugars. Are you timing your bolus doses?
You say juice for hypo-what sort? I have/had/still do have lucozade.
Might be faster acting that juice?

I think you know your body and how you react to insulin but you do need to keep the sugars in ranges as far as poss. I used to sometimes test half hour after meal to see whether I needed another bolus.

Your hormones will obviously affect your readings and insulin will go up later in pregnancy.

Sounds to me like you need to test during the night to see when they raise and maybe set your basal to increase an hour before then -that's what I did. It takes a lot of work but worth it! (After effects for me -managing 3 children under two, my daughter just diagnosed type1 and my own diabetes arrghhh!)
x

 

[aditi]

Hi Jane,

I am a mom to a one and half year old and had a tough time with my pregnancy. I looked around for a lot of info and found this forum just shoot and you have some fabulous support here!

So with pregnancy, initially for a month or so you face excessive hypos, then later your requirement only shoots and shoots. but this happened in my case, and every body is different so if something different happens to you just go with the flow. The best possible solution during pregnancy is check as much as you can... the more you see numbers,... the more they will help you figure things out.. because your body is working so hard and is facing so many new things.. its very tough to make a pattern,.

I myself went through a lot of hypo s and hypers, so don't get worried.. work towards it and ensure it doesn't happen again. Eat regular meals same quantity on regular timings.. yes your nurse is right when she says i need to see a pattern and don't alter unnecessarily.. and hence I was noting things down like crazy and touching base with my doc every 5 days.. just suddenly one fine day sugars would shoot.. so its tough.. hang in there..if you are in the starting phase a little higher sugar is any day better than low sugar.

tc..much love to you! all the very best

Edited by a mod to remove unproven medical information that may cause unnecessary concern

 

[MellitusTrap]

Every time she increases my doses I have lots of hypos (more than 5 p/day).

So the questions are:

Do hypos harm my future baby?
Is it normal and absolutely safe for a pregnant woman to have lots of hypos?
If you know some good links re managing diabetes on a pump with pregnancy please give.

I'm not a doctor.
Surely, you must seek an alternative opinion from a doctor as soon possible.

Edited by a moderator to remove information not taking into account specific issues in pregnancy

 

[tigger]

I can only tell you from my own experience so here goes.

I'm on my 3rd pregnancy now and my 1st with a pump. In all my pregancies I have tried to be tightly controlled and keep within the guidelines which are no more than 7.8 2 hours after a meal. I have never completely succeeded. My hba1cs when pregnant have always been good (and in the view of my consultants too good sometimes). What that means is too many hypos. In my 1st 2 pregnancies I suffered badly in the first trimester from hypo unawareness resulting in comas. This pregnancy is the only one I haven't had this. The danger of having too many hypos is you lose hypo awareness. I have been assured by consultants every time that hypos do not damage the baby however they can damage me and therefore should be avoided. Continual high blood sugars are statistically more likely to damage the baby. What that means is no one can predict what will happen. You could be perfect in every way and there might be a problem (non-diabetic women can have pregnancy problems too) or it might be ok. No one knows. All you can do is try your best and ensure that you are living safely and healthily. In the short term aside from hypo unawareness hypos can cause, falls, driving accidents, household injuries, all of which can potentially damage you and the baby in the way they would anyone.

I got the pump when I was 10 weeks pregnant. I knew what my usual non-pregnant dips and highs were and some of my pregnant ones. I was also quite aware of my early pregnancy ones as I'd been monitoring them carefully. In my previous pregnancies I'd low carbed a lot and didn't give this up entirely as it's easier to manage what's going on when you have less carb related spikes. I was "fortunate" in that my dsn gave me very little support as the fact I used a non-standard insulin (porcine) freaked her out. Instead I got loads of advice from people on these boards.

I don't know if you were sent away with a flat rate to use throughout the day? I was and could see instantly that wouldn't work as I knew that my body doesn't work that way. I knew roughly when my dawn phenomen was and that if I was more active I would need less insulin than when sedentary. So I broke up the 24 hr basal rate into a lot more chunks and experimented. If all this is news to you there is a book people recommend called thinking like a pancreas which might help or just some of the basic diabetes books.

I'd really recommend buying the pumping with insulin book. It has all the basics of how the pump works together with the science on basal and bolus testing which the dsn never told me about. Managing diabetes while being pregnant means constant testing and anticipation of increasing and decreasing insulin requirements and also insulin resistance which can be handled by bolusing earlier. It's a lot of trial and error but a pump used well can make it a lot easier to handle. In terms of managing my rates this pregnancy with the pump has been my easiest pregnancy.

Getting your basal rate right is key to getting the pump working. According to that book when pregnant you need to test it up to every 7-10 days as your rates can change quite rapidly. I have to say I haven't done it that often as it's a complete pain but I did it quite regularly particularly the night and early morning. If you haven't done it yet these are general guidelines on basal testing http://integrateddiabetes.com/basal-testing/ basically it involves not eating for about 10 hours.

So my recommendations would be consult people on the pumping boards, get the pumping with insulin book and do your best. I've had type 1 for 32 years and for most of this time I've had nothing to do with DSNs. I see a consultant we have a brief discussion but I've had the attitude for most of my adult life that I'm the one who sees the most real time data and knows my diabetes best and therefore I'm the one who is best placed to make changes and decisions. This has been somewhat reinforced by the idiotic things some doctors come out with and the cycles that I've seen treatments and theories go through.

It's very stressful being pregnant with type 1, with the constant pressure to be perfect and the fear that if you're not you will damage your own baby. You need support. Are you seeing a consultant? If so I suggest you raise the issue with them. Frankly if your hba1c is good and most of your readings are in the good range (and they're anything like mine) they will support you and reassure you. Feel free to experiment and play with the pump - that's the fun of it. It is a lot of hard work particularly at the beginning but if you get it right it really adds flexibility back into your life - or it has for mine.

My hba1c pre pregnancy (unplanned this time) was 7.5, it had gone down to 6.5 on injections (3 a day mix of long and short) by 9 weeks and was 5.8 after 10 weeks on the pump. The last one at 28 weeks was 5.6 with no major hypos and not many minor ones plus eating quite a bit of carby food (bread, cake etc).

Wishing you much luck and a healthy pregnancy.

 

[tigger]

http://www.amazon.co.uk/Pumping-Insulin-Everything-Success-Smart/dp/1884804861 this is one of the books I mentioned. I deliberately tried to source a really old ones as the rates would be more similar to the insulin I use. People on th epumping board can confirm what the most up to date one is.

 

[azure]

Hi @J-a-n-e

I can't comment on whether your pump doses are correct or not, but your nurse is right in saying that hypos are extremely common in early pregnancy. This is for hormonal reasons. I was constantly eating sweets and swigging Lucozade in the early weeks. It was like I had a different body - it reacted differently to foods that would normally send me high. During the day that was fine, but, as you say, it was a worry at night.

I set my alarm for 1 or 2am and tested and usually had to have some Lucozade and some biscuit. That kept my levels up and only once did I have a bad hypo in the morning (less than 2.5).

You mention juice. Lucozade or similar is much better in these circumstances. It works much quicker.

The tight targets in pregnancy are there for a reason - and yes, they are very tight. It's hard to keep in range, particularly after meals, and as the pregnancy goes on and insulin resistance increases hugely.

I know nurses and doctors can be kind of fierce about control but I suppose they adopt that approach as a norm because they're scared some people won't listen so they over-emphasise the message to make sure it gets across to every single woman.

To answer your questions:

There is no proof that hypos damage babies. Obviously if someone had a massive hypo, a seizure and fell that could hurt the baby, but I was told 'normal' hypos don't hurt baby.
Yes, it's normal to have lots of lows in early pregnancy.
Sorry, I don't have links specific to pumps in pregnancy, but I found Think Like A Pancreas useful as it showed me a graph of how my insulin needs would probably change, and I also found the experience of other women here very helpful.

If you know the lows are common early on, if you know your basal will need to increase a lot later on, if you know your ratios will change a lot, then you feel calmer when these things happen, is what I found.

Best wishes - we all know how hard control is in pregnancy, but it's very worth it in the end when your hard work pays off

 

[jade88]

Hi Jane,
I can't comment on pump as I don't use one however my DSN did not advocate hypos especially in morning because you run the risk of hypoing in your sleep or if you drive to work it could be dangerous.

So I think the risks are more associated to mum than baby but she has always had the attitude that there not good and should be avoided as much as possible!

My DSN is also a type 1 diabetic so have always felt confident following her instruction but I know it's hard to give up control and listen to the experts hope you can come to some sort of agreement with her good luck! xxx

 

[azure]

I just wanted to add that once you get more experienced and confident with the pump, that might help you too, as you may be able to suggest alternatives to the adjustments your nurse tells you to make.

And I also, how low do you go normally when you have a hypo?

 

[J-a-n-e]

http://www.amazon.co.uk/Pumping-Insulin-Everything-Success-Smart/dp/1884804861 this is one of the books I mentioned. I deliberately tried to source a really old ones as the rates would be more similar to the insulin I use. People on th epumping board can confirm what the most up to date one is.

Thank you very much for your meaningful response and support. I thought before that if I'm feeling awful after hypos my baby will feel the same. After so many people confirmed that low sugars don't affect babies I'm a bit more relaxed.

I've already ordered this book and I'm reading it now. I've also read all the comments and studied links. I think I will stick with my present doses to be able to do some tests (it says: cancel test if the blood sugar is law) - will check every 2 hours over night and then in the morning / afternoon / evening. I have a feeling that it's my carbohydrate ratio set up incorrectly. Prio to pumping it was from 1:7 to 1:15 (depends on the weather and other factors...). My diabetic consultant set up it as 1:10 and I think I need more as my sugar levels are the highest (always up to 10) 1 hour after the meal. So perhaps I need to increase carbohydrate ratio... I will make my basal adjustments after some tests... Thanks again for finding the time to comment and to support me.

 

[J-a-n-e]

I just wanted to add that once you get more experienced and confident with the pump, that might help you too, as you may be able to suggest alternatives to the adjustments your nurse tells you to make.

And I also, how low do you go normally when you have a hypo?

Thanks a lot for your support. Yesterday at night I wake up with 2.6 and then I struggled to make it up for 1 hour so I belive I was for a long time with such low sugar level...

 

[J-a-n-e]

Hi I've gone through 2 pregnancies on a pump-first a singleton and then I had twins 3m ago.

First I was told that low sugars don't affect babies but high ones defo do. It's more risk to mum-you can lose hypo awareness whilst pregnant and obviously the implications of this are significant. I did have a lot of lows because I wanted babies to be ok and it's a very fine line to get your sugars like that.

What I did was to test all the time. Including setting alarm and testing twice a night. Have you checked your basal rate through the day and at night? I have about 10 different basal rates on my pump to try sort morning blood sugars. Are you carb counting and matching your units can be different at different meal times. I was also advised to have low gi diet so not to spike sugars. Are you timing your bolus doses?
You say juice for hypo-what sort? I have/had/still do have lucozade.
Might be faster acting that juice?

I think you know your body and how you react to insulin but you do need to keep the sugars in ranges as far as poss. I used to sometimes test half hour after meal to see whether I needed another bolus.

Your hormones will obviously affect your readings and insulin will go up later in pregnancy.

Sounds to me like you need to test during the night to see when they raise and maybe set your basal to increase an hour before then -that's what I did. It takes a lot of work but worth it! (After effects for me -managing 3 children under two, my daughter just diagnosed type1 and my own diabetes arrghhh!)
x

Thanks a lot for your answer, your suggestions and your questions that made me think more. I'm so sorry your daughter was diagnosed with type1.
I know now that I must make an effort to low my sugar levels, to avoid harm to my future baby. I have checked my basal rates throught the night which let me adjust my doses and low my morning sugar levels (first 2 weeks of my pumping they were 17 every morning), but I think I need to do it again.
My diabetic nurse says she will not recommend more than 4 basal rates. I have 4 at the moment and I'll do more testing to see some patterns.
I know lucazade is faster, but I use juce as I was told to use 20 gr of fast acting carbohydrates to increase my sugar level - my juice cartridges are 21 gr each.

 

[J-a-n-e]

Hi Jane,

I am a mom to a one and half year old and had a tough time with my pregnancy. I looked around for a lot of info and found this forum just shoot and you have some fabulous support here!

So with pregnancy, initially for a month or so you face excessive hypos, then later your requirement only shoots and shoots. but this happened in my case, and every body is different so if something different happens to you just go with the flow. The best possible solution during pregnancy is check as much as you can... the more you see numbers,... the more they will help you figure things out.. because your body is working so hard and is facing so many new things.. its very tough to make a pattern,.

I myself went through a lot of hypo s and hypers, so don't get worried.. work towards it and ensure it doesn't happen again. Eat regular meals same quantity on regular timings.. yes your nurse is right when she says i need to see a pattern and don't alter unnecessarily.. and hence I was noting things down like crazy and touching base with my doc every 5 days.. just suddenly one fine day sugars would shoot.. so its tough.. hang in there..if you are in the starting phase a little higher sugar is any day better than low sugar.

tc..much love to you! all the very best

Edited by a mod to remove unproven medical information that may cause unnecessary concern

Thanks a lot for your support and help - I will sort it now.

 

[J-a-n-e]

Just wanted to say a big thank you for finding some time to answer and to support me. I really appretiate it. I hope I will be able to low my sugars. Thanks a lot...

 

[1Sarah1]

Thanks a lot for your answer, your suggestions and your questions that made me think more. I'm so sorry your daughter was diagnosed with type1.
I know now that I must make an effort to low my sugar levels, to avoid harm to my future baby. I have checked my basal rates throught the night which let me adjust my doses and low my morning sugar levels (first 2 weeks of my pumping they were 17 every morning), but I think I need to do it again.
My diabetic nurse says she will not recommend more than 4 basal rates. I have 4 at the moment and I'll do more testing to see some patterns.
I know lucazade is faster, but I use juce as I was told to use 20 gr of fast acting carbohydrates to increase my sugar level - my juice cartridges are 21 gr each.

Hi how long have you been diabetic for if you don't mind me asking? Do you know why your nurse doesn't recommend more than 4 basal?-is that throughout the day? For me my basal adjustments were the key to good control. I've been diabetic since I was 2 and mid 30s now and best control I've had on a pump as suffered terribly with dawn phenomenon and rising blood sugars early morning but have numerous basal rates now to control it.
Can you not take lucozade as its fastest help you get out of your hypos quicker?

 

[tigger]

I have 17 basal rate chunks on my current profile and 13 set up on the one i'll switch to after the baby is born. I know there is a theory that normal pamcreases don't vary this much but it's what works for you that matters.

Regarding post meal readings you have to take into account your insulin profile, what you've eaten, fat content (this was completely new to me), stress,weather and malfunctioning canulas,air bubbles etc. Also check if your consultant is more concerned about the 1 hr or 2 hr reading. It is complicated and later on in pregnancy i've found i get more air bubbles as my body temp has risen.

I'd suggest testing with low fat easy measurable carbs.

I also have 3 different carb ratios for different times of day as i've always been more resistant in the morning and am highly sensitive around 4-6 pm.

Before you experiment with carb ratios it's best to get your basal right.

I use glucose sweets for hypos and juice. I can't stand lucozade. Glucose sweets work well and are eady to measure and carry. Juice is slightly more slow acting.

Good luck!

 

[J-a-n-e]

Hi how long have you been diabetic for if you don't mind me asking? Do you know why your nurse doesn't recommend more than 4 basal?-is that throughout the day? For me my basal adjustments were the key to good control. I've been diabetic since I was 2 and mid 30s now and best control I've had on a pump as suffered terribly with dawn phenomenon and rising blood sugars early morning but have numerous basal rates now to control it.
Can you not take lucozade as its fastest help you get out of your hypos quicker?

My nurse is saying it's too messy to have many rates.

 

[Mrsass]

My nurse is saying it's too messy to have many rates.

Too messy for who? Her? It makes no sense to say that when as others have said some manage perfectly with a couple of different rates, some need 15+, it's what works for each individual.

I get what you are saying about the juice as it is portioned, I've found when I drink lucozade 1/4 of a 500ml bottle gets me back to where I need to be bg wise, it effects people differently but may be worth playing around with a bit to see if it does bring you up faster and just find how much works for you.

I too experienced/am experiencing lots of hypos (currently 14 weeks) I've reduced my basal through the night to try to stop the hypos but I have been on a pump 2 years,

I hope you are managing bg's/hypos a little better and are feeling ok X

 

[himtoo]

My nurse is saying it's too messy to have many rates.

sorry -- had to join in at this point-- I know I am a bloke and have only been on a pump for 3 months but I have 11 different rates within a 24 hour period and this has been through loads of testing and adjusting to suit MY particular requirements.
@Mrsass has it spot on with her comments - too messy for your DSN is not too messy for you !!