Anyone diabetic before pregnacy

[080509]

Yayyy off topic but i'm on the next baby on my ticker!!

 

[080509]

Stuck at 11mmol, keep correcting and its doing nothing!

now 9.4 well thats a start!

 

[LouisaC]

Wow...a few days away and the thread has come alive! Welcome to all the new faces!

080509 - great on getting to the next baby tile! How are the bloods coming on? I know it can be frustrating waiting for them to come down, I often get over zealous and end up over correcting and going hypo - big mistake! So hang in there and remember the IOB time frame. I know that you don't need the lecture on it, but its easy to forget when you're getting frustrated. I usually end up having a nap to pass the time.

I've had a weekend away and have picked up my pram from family - I decided that with the ' lets get a plan for delivery' appointment scheduled for this week, it was about time I had the pram and car seat (its a travel system) with me rather then miles away. I can't stop playing with it and am fast becoming a pro at setting everything up - much to OH's disappointment (he's usually the technical one!)

I've also got my appointment with the BF midwife this week so that I can start expressing ready for D day! But am so happy that I'm finally starting to see some leaks from my left boob - so that's cheered me up as well I know it sounds silly, but I wanted to make sure that if baby needed any extra milk whilst in SCBU (if s/he ends up there) or if baby is delivered by C-section and I can't feed straight away, that there'll be plenty around.

How is everyone else doing?

 

[080509]

I bet that was lovely getting your pram, i'm abit of an addict when it comes to them! We are constantly changing them/selling then getting more, but we are down to 2 now (double and a single) haha, i think my OH is fed up of me changing my mind!
That sounds like a great idea! I'm worried this time LO's sugars will be low and we won't be able to breastfeed, last time i had no problems but my hba1c at the end of pregnancy was 4.8! So i'm just hoping i can improve my levels for that purpose also.

I'm really not doing good, just feeling down about it, my levels shot up to 15 even though i hadn't eaten since 5, corrected again and back down to 9, i just don't even know what to do anymore. Is there anything i can do/say to sway them into letting me have a pump? I'm struggling with night levels having to snack through the night and before bed otherwise i go low, yet when i reduce it i'm waking up around an 8-9.
Can i just ask what are your morning levels normally like? Did you go on the pump before pregnancy or was it something they changed you to once you told them you were pregnant? I'm just feeling hopeless with it all right now, i know worrying does no good i'm just feeling like i can't cope with the anxiety, its ruining my life and i can't do things with my kids on my own because i'm scared of hypoing when i'm on my own with them so i keep my levels running above 8 continuous because of it.

 

[CelticNiamh]

I've sort of changed my mind, i spent all day crying yesterday over it, i got a message back of somebody who seemed unsuitable (i hate to be judgemental) and the thought of giving him away is making me feel heartbroken! I know it sounds sad/silly but he's like a person in here, we've had him 4 years (he's 9 now) and i got attatched to him from word go and he's such a loveable dog, never shown any aggression to our kids even though our 2 year old has probably annoyed him a few times, so it seems unfair to rehome him, if he was aggressive i wouldn't hesitate to get rid of him but as he's so lovely i feel like its me who needs to make more effort/give him more attention. Sorry for the ramble!

If i was exercising i'd probably inject less, just to be on the safe side, hypos can come on really quick when being on the move, i'm probably paranoid though as i'm always scared i will hypo when out alone with our little ones, its hard to get the right balance of not being too high or too low.

I'm still only on small amounts, i'm type 1 but slow onset, they thought it was GD in 2010 but they tested me for type 1 antibodies as they thought with me being quite young and a normal BMI it wasn't GD, i thought they was lying lol but then it didn't go away after our eldest was born, i was gutted!

Last night i had 6units, ended up going low 2.8 when i set my alarm to check and i hadn't woke up out of it! I can't keep having night hypos its too scary, so tonight i'l reduce to 5 and be around 8mmol tomorrow morning. I want a pump! They won't give me one i bet lol.

xx

That is scary I am taking 14 units at night now still nearly 6 fasting each morning not to bad but still above what they want my levels to be fasting. I adjusted my insulin today as I was out for the afternoon walking a short walk turned in to over a 2 hour hike my FIL brought us the long way roung LOL but I was prepared and did not go low so well pleased with that my poor legs are not doing so good though huge LOL

stupid question but are you having a snack with your bedtime insulin just wondering if that would help but I sure you are any way! or would talking it a little be later help I am sorry I am a novice so only guessing at what could help

 

[080509]

Thanks, its just one of those days i think
I take my levemir around 8pm, i usually have a slice of toast at 10pm but that pushes me up to around 10mmol but they seem okay with that, but i can sometimes check around 2am and it will drop back down to around 2-3mmol, sometimes it stays around 10mmol, so i either hypo in my sleep and wake up with a cracking headache but keeping me around 6-7mmol in a morning, or i wake up around 9mmol having not had a hypo.

I just feel like i cant do right for wrong, if i keep my levels normal i'm useless with my kids, can't go out because i'm terrified of having a hypo and my LO will run off if i collapse,yet if i keep my levels high thats doing the baby no good whatsoever and i just get annoyed with myself which my kids probably pick up on.

 

[CelticNiamh]

Thanks, its just one of those days i think
I take my levemir around 8pm, i usually have a slice of toast at 10pm but that pushes me up to around 10mmol but they seem okay with that, but i can sometimes check around 2am and it will drop back down to around 2-3mmol, sometimes it stays around 10mmol, so i either hypo in my sleep and wake up with a cracking headache but keeping me around 6-7mmol in a morning, or i wake up around 9mmol having not had a hypo.

I just feel like i cant do right for wrong, if i keep my levels normal i'm useless with my kids, can't go out because i'm terrified of having a hypo and my LO will run off if i collapse,yet if i keep my levels high thats doing the baby no good whatsoever and i just get annoyed with myself which my kids probably pick up on.

I take insulatard at 10pm with a small snack before I go to bed, would taking it later help prevent the hypo may be would it then kick in later and work to help prevent that morning rise may be but stop you going hypo earlier

I have noticed that, when I get my levels normal I beging to feel low when I am not its a pain, but also worried me on what level I was walking around at before they put me on insulin

 

[080509]

Thats a good point, or i could maybe set my alarm for around 3am to inject so it might then cover the rise which happens after 5am-8am!
With it being bank holiday tomorrow, my DSN won't be available so i think i will just give it another night and see how it goes. Today i felt low at 4.3, shaking and all sorts bizarre as in my last pregnancy i only started to feel low when i got below 2.7 which i know is bad, but i know its not ideal to be running high either. Hopefully will get this sorted, i'm just more worried as the weeks go by!

 

[CelticNiamh]

Thats a good point, or i could maybe set my alarm for around 3am to inject so it might then cover the rise which happens after 5am-8am!
With it being bank holiday tomorrow, my DSN won't be available so i think i will just give it another night and see how it goes. Today i felt low at 4.3, shaking and all sorts bizarre as in my last pregnancy i only started to feel low when i got below 2.7 which i know is bad, but i know its not ideal to be running high either. Hopefully will get this sorted, i'm just more worried as the weeks go by!

3am that will be hard walking up to do that FX no hypo tonight for you

 

[CelticNiamh]

Thats a good point, or i could maybe set my alarm for around 3am to inject so it might then cover the rise which happens after 5am-8am!
With it being bank holiday tomorrow, my DSN won't be available so i think i will just give it another night and see how it goes. Today i felt low at 4.3, shaking and all sorts bizarre as in my last pregnancy i only started to feel low when i got below 2.7 which i know is bad, but i know its not ideal to be running high either. Hopefully will get this sorted, i'm just more worried as the weeks go by!

3am that will be hard walking up to do that FX no hypo tonight for you

 

[080509]

I don't think i hypo'd last night (sometimes i sleep through them) and i woke up at 7.6mmol. I'm going to ring DSN tomorrow, i've run out of test strips so no chance of testing today, i've not eaten anything since yesterday and can't until i get more strips. I test way too much (probably use about 100 in 6 days) i hope you are doing okay x

 

[JoLM]

Thanks, its just one of those days i think
I take my levemir around 8pm, i usually have a slice of toast at 10pm but that pushes me up to around 10mmol but they seem okay with that, but i can sometimes check around 2am and it will drop back down to around 2-3mmol, sometimes it stays around 10mmol, so i either hypo in my sleep and wake up with a cracking headache but keeping me around 6-7mmol in a morning, or i wake up around 9mmol having not had a hypo.

I just feel like i cant do right for wrong, if i keep my levels normal i'm useless with my kids, can't go out because i'm terrified of having a hypo and my LO will run off if i collapse,yet if i keep my levels high thats doing the baby no good whatsoever and i just get annoyed with myself which my kids probably pick up on.

I'm exactly the same, at around 2.30am i'm either having lucozade or correcting to try and get my levels to around 6-7mmol to start the day with.

 

[LouisaC]

I don't think i hypo'd last night (sometimes i sleep through them) and i woke up at 7.6mmol. I'm going to ring DSN tomorrow, i've run out of test strips so no chance of testing today, i've not eaten anything since yesterday and can't until i get more strips. I test way too much (probably use about 100 in 6 days) i hope you are doing okay x

Oh no!

Are you able to get hold of some more? Unfortunately I've been there and done that, on a friday! Ended up buying a box of them from chemist, but I know that if you normally take your prescriptions to Boots (Unfortunately I don't, and it does have to be on a regular basis) they will give you a box up front and then deduct it from your next prescription. Which can be a godsend and definitely worth a try!

 

[LouisaC]

I bet that was lovely getting your pram, i'm abit of an addict when it comes to them! We are constantly changing them/selling then getting more, but we are down to 2 now (double and a single) haha, i think my OH is fed up of me changing my mind!
That sounds like a great idea! I'm worried this time LO's sugars will be low and we won't be able to breastfeed, last time i had no problems but my hba1c at the end of pregnancy was 4.8! So i'm just hoping i can improve my levels for that purpose also.

I'm really not doing good, just feeling down about it, my levels shot up to 15 even though i hadn't eaten since 5, corrected again and back down to 9, i just don't even know what to do anymore. Is there anything i can do/say to sway them into letting me have a pump? I'm struggling with night levels having to snack through the night and before bed otherwise i go low, yet when i reduce it i'm waking up around an 8-9.
Can i just ask what are your morning levels normally like? Did you go on the pump before pregnancy or was it something they changed you to once you told them you were pregnant? I'm just feeling hopeless with it all right now, i know worrying does no good i'm just feeling like i can't cope with the anxiety, its ruining my life and i can't do things with my kids on my own because i'm scared of hypoing when i'm on my own with them so i keep my levels running above 8 continuous because of it.

I was given the pump before pregnancy when I actually arrived at a diabetic appt with BG of 2.0mmol and no warning whatsoever - I think that they got a bit freaked out and knew that things had to change drastically.

I would have a look and see if your NHS authority has a diabetes webpage - mine does and it gives some helpful advice (https://www.avondiabetes.nhs.uk/diabetes/management/Insulinpumptherapy.htm). Otherwise, INPUT is a must - https://www.input.me.uk/

Here's the link for an info leaflet from INPUT which helps people who want to apply for a pump https://www.input.me.uk/wp-content/uploads/2013/04/Step_by_step_guide.pdf - this leaflet explains that under the NICE Guidelines - you do fit the requirements for pump therapy and should therefore NOT be declined unless there is a clinical reason for the decision and this is properly explained to you.

I would also make a list of the reasons you think that you would benefit from the pump. From what you have mentioned on here:

1) You are pregnant, pumps can significantly improve your control, which is important for LO's development and future health

2) The pump will significantly improve your BG control once LO is here - You have young children to look after - you can't be taking chances with your control

3) You are planning on BF'ing - this is known to have an effect on BG control- a pump enables you to set a reduced temporary basal rate (4 daily injections do not) whilst you feed to reduce the chances of hypo - BF'ing is better for your LO - play on this point - you are entitled to help to enable you to BF

4) You experience the dawn phenomenon

5) You have a fear of hypo and worry that you are experiencing un-noticed hypo during the night which can lead to a hypo-induced coma - how much would that cost the NHS compared to a pump????

It is important to also stress to them that even though the pregnancy has another 20 weeks to run (and it could ba argued that the arguments you are presenting are therefore time-constrained)- you have to look after LO for a considerably longer period - so the effects will last much longer than 20 weeks

I would also ensure that you are completely up to date on the DAFNE training - this will also help.

I hope this helps and that your care team sit up and listen to what you're saying But it is always helpful to write the title to these documents and charities and quote them in your appointments - show that you know what you're talking about and that you have done your research.

Good luck!

 

[peanutmomma]

I would love to have a pump! I had one when I was 16 so 13 years ago, and at that time the tubing and tape was all latex based and at a check up 6 months later I had a horrible infection and A1c had gone from 5.5 to 11. I found out I was allergic to the latex. Now, I know all of the companies use nonlatex based products. But, I have government assistance for insurance and was only able to get insurance because I am pregnant. SO, I can't afford the amount I would have to pay out of pocket to get one. I now am rollercoastering with BS all day and night since Sunday evening. If I give even 1 unit of Novolog I so super Low and if I don't I go super high. I eat and tried snacks through the night only to wake up to BS about 13.0 where as they were under 4.0 two hours prior. I have another return Visit with my endocrinologist next Tuesday and I may ask since I have the insurance atm if he thinks we can try to see if they will cover a pump.

 

[080509]

Thanks Louisa, i don't have an appointment with them until 11th june but i phone every friday to tell them about my levels. Today i went down and got some strips i guess i'm lucky in the sense if i've run out the diabetes centre will give me a box to keep me going.
I really want a pump now, i think in terms of the night times it will definitley help, i'm still only on a small amount of background but it seems silly to have to go to bed with a reading of around 10mmol so i don't hypo? Surely it makes more sense to maybe go to bed with a reading of 7mmol and wake up with a 7mmol? Less highs? They don't get that though. I don't know whats going on with these levels today, its been really hot (for england haha!) well probably 20c but since we have had an ever lasting winter it seems boiling, i can't keep my levels below 12 again! Couldn't test this morning as i'd no strips but when i got back i was 8.7 having not eaten since yesterday morning :/ Had breakfast and had more insulin as i was high yesterday after bfast, and 1hour later 10mmol and it wouldn't shift. Had a sandwich this after noon, had 6units (usually have 4u) and its now 12 even after a 3u correction.

Spoiler

My guidelines here are 1hour reading under 7.8, i'm struggling with achieving this, i'm making myself ill with panic, its been nice weather and i haven't been able to take my kids out because i'm scared of having a hypo. Because my levels have been crap lately i now feel hypo in the 6's, shaking and all sorts. I feel exhausted due to the anxiety of it all, i wasn't like this last pregnancy, i had an hba1c under 5% throughout, this time its just come back at 8.1% and i've never had a hba1c over 6% in my life! I just feel so pissed off with it all. I feel like i can't do right for wrong with anyone, if i let my levels run high then its unfair on the baby, if i'm keeping normal levels i can't do anything with my kids and end up testing 20x a day (i'm not joking i go through that many strips) I'm only 21 why am i living like this? I shouldn't be anxious i should be able to go out with my kids to the park not be constantly in a panic. I'm sick to death of crying over it non stop. The only thing keeping me going is being glad its me that has it and not my kids, i wouldn't wish this on anyone.
Do you think it would be bad of me to aim for a 2 hour reading of below 6, rather than a 1hour reading of below 7.8? If i lower the carbs so i don't spike high after 1hour? I just feel whats the point in aiming for a low 1hour reading when i'm only going to push it back up to around 12mmol after panicing i will hypo so purposedly keeping my levels high to avoid them, i know there are places/hospitals where ladies are told to keep a 2hour reading of less than 7.8 rather than 1hour. What does everyone think of this? It probably makes me look like a crap mum taking the easy way out, i just surely thing the less spikes and lows would be better.. I asked my DSN at my last appointment whether i should and she just said "guidelines are there for a reason"

 

[080509]

Louisa, me again see i do think i fit the criteria for a pump, but how do i go about asking for one? Do i just bring it up on the phone with my dsn? I think i would benefit one because my basal needs vary so much, for example i barely need any throughout the day (tested during a "fast day" a couple of weeks ago, its mainly between the hours of 4am-8am (dawn phenomenon) but when i up my insulin i either go low overnight or have to go to bed with a reading above 10 to stop the drop. I clearly have the hypo fear thing as i can't go out on my own with kids and i count down the hours til OH is home from work, i'm planning on BFing and one thing that worries me after birth because i will be on more basal in pregnancy, that stays in me for 24hours using the insulin pens, what if LO is born a few hours after injecting my basal, i would then keep hypoing until it ran out? Lol! I don't seem to know when i'm hypo or when i'm imagining it, for example yesterday i was 2.8 and didn't know, yet today i was 12.7 and thought i was hypo :S the only thing i'm okay with is needles, i'm not phobic of them at all (though i don't like the big blood test ones they do) hopefully they will agree it will be worth while. Thanks for finding that page is very helpful x

 

[Xanth]

Just popping in to catch up. Hope you're all ok xx

 

[LouisaC]

Louisa, me again see i do think i fit the criteria for a pump, but how do i go about asking for one? Do i just bring it up on the phone with my dsn? I think i would benefit one because my basal needs vary so much, for example i barely need any throughout the day (tested during a "fast day" a couple of weeks ago, its mainly between the hours of 4am-8am (dawn phenomenon) but when i up my insulin i either go low overnight or have to go to bed with a reading above 10 to stop the drop. I clearly have the hypo fear thing as i can't go out on my own with kids and i count down the hours til OH is home from work, i'm planning on BFing and one thing that worries me after birth because i will be on more basal in pregnancy, that stays in me for 24hours using the insulin pens, what if LO is born a few hours after injecting my basal, i would then keep hypoing until it ran out? Lol! I don't seem to know when i'm hypo or when i'm imagining it, for example yesterday i was 2.8 and didn't know, yet today i was 12.7 and thought i was hypo :S the only thing i'm okay with is needles, i'm not phobic of them at all (though i don't like the big blood test ones they do) hopefully they will agree it will be worth while. Thanks for finding that page is very helpful x

No problem - it really winds me up that people get different treatment based on where in the country they live - like I say, my care team have been amazing since the word go - and I really do appreciate them all the more for having spoken with you and had the chance to compare. I can't really tell you how to go about requesting a pump because I had it offered to me.

I also can't advise on whether you meet the criteria any more than I have done in my previous post - I don't want to hold myself out as a medical professional, but I am legally trained, so I can give a bit of practical advice on how I'd approach the subject.

I would ask for an urgent appointment with my DSN, Diabetes consultant and the maternity lead professional (their name should be on the front of your yellow notes) Having them all in the same room means that nothing gets missed or lost in translation. You should be able to get an appontment so that they can attempt to get your BGs sorted, 5 weeks to see someone is a very long time to wait. I would prepare for this appointment with:

1) your BG level readings etc (do they still use the red books for recording BGs and insulin levels??) for the entire pregnancy (as a start)

2) a print off of the leaflet from Input

3) A list of all the reasons you think you meet the criteria - pregnancy brain will demolish them when you walk through the door - this will also show that you've done your research and that you are taking this seriously

4) There should be an NHS webpage that gives the hierarchy for the diabetic department at your hospital - know who it is that is at the top of the list as the most important person who would have responsibility for reviewing the decision re pumps - have their e-mail address ready just in case you don't get the response that you want

When in the meeting with them - I would be saying to them that the situation as it is, is causing you anxiety, that you are having these hypos (have some fasting BGs to show this) and show that you have adjusted your background insulin with no avail - this directly addresses one of the criteria in the NICE Guidelines - make this point to them!!!!

Tell them that you want to be considered for insulin pump therapy and tell them the reasons you think you qualify.

Then discuss the benefits and any potential downfalls of this treatment - some posters have already said that this didn't work for them, its not easy, it can be time-consuming, but if you can get it right, its worth it.

Ask them at the end of the appt whether they will take this further - what they are going to recommend etc - if you get the action you want, then brilliant, if not...

Ask them to write down in your notes, that you have requested to be considered for this treatment and the reasons why - this may put the frighteners on them (it gives the indication that you will take this further - and may be met by some hostility - so you need to evaluate their responses as you go through the meeting as to how you approach this) AND the reasons that they have given for not taking your request further.

If you have no luck speaking with them (the request is probably best made in person) I would ask the person I've listed under point 4 to review your notes and their decision - I would also speak with Input about their advice going further - they will have a lot of experience in this and should be able to give some helpful advice.

Like I say - this is only what I would do - thinking at a practical level. Like I say, Input are the people who deal with this kind of thing on a day-to-day basis (Unfortunately medical negligence is not my particular area) and would be able to give further advice.

They have a freephone number (it is an answerphone and they will get back to yor) 0800 228 9977 or you can use their online contact form https://www.input.me.uk/about-input/

And before anyone says anything - no I'm not one of their employees/volunteers! lol

I hope it all goes well

 

[080509]

Brilliant thanks so much, i'm ringing them friday with my readings so i'm going to ask for an appointment to be made sooner, as i won't be seeing them all until my growth scan. I've only just eaten today as i couldn't inject the novorapid until OH got home incase it dropped, so i've felt weak with no food, hopefully this will sway them abit! I will write it all down because like you say, i tend to go blank when i'm faced with alot of them at once, they always say "do you have any questions" at the end of the appointment and i can never think of any, so i think it would be worth writing alot down.

Here we have an extension on our maternity notes, its an orange booklet with info about diabetes (alot about GD though) and the risks etc, and also a log section where you mark down readings, but theres hardly any space for all my corrections, last night i corrected and had 3 hypos in the space of 8 hours, i didn't get to sleep til gone 3am and was up at 6am with my 2 year old, its so time consuming and tiring! x