Loss of Hypo Awareness

[quintel]

Hi everyone

I'm currently 15 weeks pregnant and have started to notice my hypo awareness is decreasing. With my tight control at the moment, I've noticed I now won't feel my hypos until around 3.0 rather than before where I'd feel it at say 4.0.

I'm terrified of being made to go onto the pump and am scared of what my consultant will say at my appointment on Friday.

Does anyone have advice as to how I can regain some awareness but safely due to pregnancy? This is my first pregnancy and is with twins to complicate things further!

Thank you in advance!

 

[catapillar]

Realistically, I don't think there is any advice on regaining hypo awareness that you are going to be able to implement at the moment.

The advice on regaining hypo awareness is to run a little higher, ie to aim towards the top of the target, but that's the generic DAFNE target which is a little looser than the pregnancy targets, and avoid hypos as far as possible.

You might stand a bit more of a chance of getting funding for a CGM while pregnant and struggling with hypo awareness, so it's worth asking about that.

No ones going to make you go on a pump, so that's a misplaced fear.

Do you drive? Because DVLA says you need adequate hypo awareness to maintain a driving licence. And not noticing until you're at 3 is not adequate hypo awareness by a pretty decent stretch.

 

[quintel]

Realistically, I don't think there is any advice on regaining hypo awareness that you are going to be able to implement at the moment.

The advice on regaining hypo awareness is to run a little higher, ie to aim towards the top of the target, but that's the generic DAFNE target which is a little looser than the pregnancy targets, and avoid hypos as far as possible.

You might stand a bit more of a chance of getting funding for a CGM while pregnant and struggling with hypo awareness, so it's worth asking about that.

No ones going to make you go on a pump, so that's a misplaced fear.

Do you drive? Because DVLA says you need adequate hypo awareness to maintain a driving licence. And not noticing until you're at 3 is not adequate hypo awareness by a pretty decent stretch.

I suppose having a word with the consultant will have to be my first port of call if there not an easy way for me to regain the awareness and he won't be happy for me to run higher.

I'll definitely ask about the CGM if you think it's a good idea! Not something I know a lot about.

Yes I do drive so am absolutely desperate to sort this as my other half is registered severely sight impaired and isn't ever allowed to drive. I need to be able to drive so if there isn't any solution on Friday then I guess I'm in a bad way. Now I'm very scared of whats going to happen

 

[quintel]

Realistically, I don't think there is any advice on regaining hypo awareness that you are going to be able to implement at the moment.

The advice on regaining hypo awareness is to run a little higher, ie to aim towards the top of the target, but that's the generic DAFNE target which is a little looser than the pregnancy targets, and avoid hypos as far as possible.

You might stand a bit more of a chance of getting funding for a CGM while pregnant and struggling with hypo awareness, so it's worth asking about that.

No ones going to make you go on a pump, so that's a misplaced fear.

Do you drive? Because DVLA says you need adequate hypo awareness to maintain a driving licence. And not noticing until you're at 3 is not adequate hypo awareness by a pretty decent stretch.

I suppose having a word with the consultant will have to be my first port of call if there not an easy way for me to regain the awareness and he won't be happy for me to run higher.

I'll definitely ask about the CGM if you think it's a good idea! Not something I know a lot about.

Yes I do drive so am absolutely desperate to sort this as my other half is registered severely sight impaired and isn't ever allowed to drive. I need to be able to drive so if there isn't any solution on Friday then I guess I'm in a bad way. Now I'm very scared of whats going to happen

 

[Sonny jim]

I lost my hypo awareness during pregnancy also. In order to be allowed to keep driving (it’s essential for me getting to work) I had to agree to a pump. They couldnt force me to have it, but it was a pretty clear choice between the pump or being too dangerous to drive.
I know this may not be what you want to hear, but it did work wonders and really helped me throughout my pregnancy. There was nothing I could do to increase awareness without one during pregnancy. I got rid of it the moment the baby was born though and everything went back to normal, normal insulin dose, normal hypo awareness, everything.
I detested the pump, it became a joke with my care team and the consultant just how much I hated it! But it allowed me to continue as I needed to, working and driving, and helped ensure my baby was born without any problems or complications.
I have been back to pre con clinic as we are planning our second and the issue of the pump has already come back up, I’ve declined for now but am preparing myself for it as I know it will be inevitable for me. I totally empathise with you not wanting the pump, but it doesn’t have to be forever, and it does work.
I have been researching the CGM option as I thought I might ask too if it could be considered instead of the pump, but I’m not sure as it’s the insulin delivery that seemed to solve this problem. Defo worth asking the experts though, I know I will be!

 

[quintel]

I lost my hypo awareness during pregnancy also. In order to be allowed to keep driving (it’s essential for me getting to work) I had to agree to a pump. They couldnt force me to have it, but it was a pretty clear choice between the pump or being too dangerous to drive.
I know this may not be what you want to hear, but it did work wonders and really helped me throughout my pregnancy. There was nothing I could do to increase awareness without one during pregnancy. I got rid of it the moment the baby was born though and everything went back to normal, normal insulin dose, normal hypo awareness, everything.
I detested the pump, it became a joke with my care team and the consultant just how much I hated it! But it allowed me to continue as I needed to, working and driving, and helped ensure my baby was born without any problems or complications.
I have been back to pre con clinic as we are planning our second and the issue of the pump has already come back up, I’ve declined for now but am preparing myself for it as I know it will be inevitable for me. I totally empathise with you not wanting the pump, but it doesn’t have to be forever, and it does work.
I have been researching the CGM option as I thought I might ask too if it could be considered instead of the pump, but I’m not sure as it’s the insulin delivery that seemed to solve this problem. Defo worth asking the experts though, I know I will be!

You've really reassured me, it's made me feel a tonne better that I'm not the only one who's been in this situation and to know that you managed it makes me feel it is possible!

I mean I'd only be on the pump for 5/6 months if I think of it like that, I would definitely do what you did and get rid ASAP. It will be my last resort. At the end of the day, I don't want to put myself, my babies or anyone else in danger so I suppose it's time for me to bite the bullet

 

[Sonny jim]

They told me it’s very common to lose hypo awareness in pregnancy but it was just like flipping a switch when baby arrived and everything went back to how it was pre pregnancy.

That’s totally the right attitude, looking back I feel I wasted so much time worrying and feeling negative during my pregnancy because of it, but it was only for a short time. I wouldn’t make that mistake next time around.

Good luck at your next appointment, I’m pleased if my experience has made you feel a little less worried

 

[quintel]

They told me it’s very common to lose hypo awareness in pregnancy but it was just like flipping a switch when baby arrived and everything went back to how it was pre pregnancy.

That’s totally the right attitude, looking back I feel I wasted so much time worrying and feeling negative during my pregnancy because of it, but it was only for a short time. I wouldn’t make that mistake next time around.

Good luck at your next appointment, I’m pleased if my experience has made you feel a little less worried

I personally don't know any Type 1's at all, so hearing from another person who's been in my situation makes me so much more reassured. Hearing you say it's common and how it affected you puts my mind at ease since I knew no one who can tell me of their experiences!

I will definitely bring it up now as I was just so scared of any repercussions. I have spent quite a lot of this pregnancy just worrying and worrying. You've certainly taken a bit of that worry away and I can't wait for the time to come where I can relax a bit more!

Thank you so much for your reply and compassion and understanding, it means so much

 

[Scott-C]

@quintel , I second the recommendations that you ask about cgm such as Dexcom, and, if you're turned down for funding on the nhs, give some thought to funding it privately for the duration.

It's a massively powerful tool for closely monitoring and managing bg levels at a time when you need exactly that, and they really don't take that long to get to grips with - a few days and you'd be getting the hang of it.

Stick the sensor on your arm, it'll take a reading every five minutes, sends it to your phone where it appears as a dot in a graph. This lets you see levels changing in pretty much real time, so you can step in and take some action before you end up hypoing or hypering. Plus you can set it to ring the phone, so if you start heading towards being out of range while sleeping it'll wake you up.

Probably easier to show with a picture. Pic below is from an app called xDrip+, which is kinda similar to the dexcom app.

Each blue dot is a five minute reading. I'd either been tweaking my basal or had been out for a few beers, can't remember which, but that's me on a slow slide down from 6 to 4.3 over 3 hours to 4am, when it hit my low alert at 4.3, phone rang, woke me up, took 5g, so it wandered back up to around 6 again. No hypo, no crisis, no overshoot.

Also great for assessing how much 1 or 2 units will drop by to pin a developing hyper.

Just being able to actually see it happening on a graph makes tighter control way easier, compared to just the snapshots strips give you.

If I had a pregnant T1 partner, I'd be pulling strings to make sure she was on cgm.