T1. Feel like giving up.

[Aknitty]

I was diagnosed at 27, am 36 now. Took years to get pregnant with my daughter. I saw my team weekly at a pre conception clinic, the nurse I saw was horrific. She wouldn't offer help or guidance but continually told me I was a bad mum for even thinking about pregnancy. I moved hospitals!

New team was great and after two years in total, I got the green light. A while later I got pregnant.

Now, am trying for green light for baby no 2. Since January, been working my blinking bum off (hard not to swear) to get Hba1c right. In July, it was 55. I was told I was having too many hypos and had lost awareness so to let it go, be less strict etc to regain awareness. Since then, bloods are mostly stable but am still told I have too many hypos.
Am sat here now on my own crying, because I don't know what else I can do anymore to make this happen. The team I have don't realise the urgency I have and just keep telling me I am a baby, (in terms of age) and not to worry. I do worry. It took ages for me to get pregnant and I had an ectopic and miscarriages in the meantime. I feel like they keep me at arm's length and don't take me seriously. I am supposed to have email contact with someone every two weeks but it rarely happens. If it does, I am just told I am having too many hypos or need to keep going or told about future changes that might happen. I am ten months down the line and I feel no nearer. I feel like they are totally in control of my family and I feel like giving up on the whole plan of having another baby.

The awful nurse from previously, really impressed on me how any Hba1c that wasn't perfect, would result in a life of pain for a baby who would be born with serious difficulties. I can't hack that guilt. I was supposed to have my Hba1c done this month but my nurse and my consultant have both gone away for at least a month without saying anything, I heard from a dietician I emailed.
Should I just give up? My baby is 3 in the spring. I don't want to wait much longer.
Shall I move back to the horrid nurse? At least I was seen regularly in clinic.
Shall I be honest with my team?
So sorry for all this. My partner doesn't get it and nobody else I know understands. Feel so fed up.
Thank you for reading this.

 

[Kittycat_7_]

Hi,
I'm so sorry for the difficulties your having, personally I'd stay at the hospital your with now.
I can understand you want another baby, 36 is young through. Hope you're Hba1c stabilises so you can get pregnant.
Must be very frustrating for you.
Here to listen anytime.
Take care

 

[Diakat]

Could you afford to fund a Libre for a few months to try and head off hypos and spot patterns to improve a1c?

How long ago were your ectopic and miscarriages (sorry to hear you went through the pain of these) as hormonal changes associated will have affected levels too.

Talk it all through with the team, be honest, and yes you are still young, but they need to recognise that you need some help here. Ask if they might prescribe Libre or lend a CGM to help.

 

[Aknitty]

Hi,
I'm so sorry for the difficulties your having, personally I'd stay at the hospital your with now.
I can understand you want another baby, 36 is young through. Hope you're Hba1c stabilises so you can get pregnant.
Must be very frustrating for you.
Here to listen anytime.
Take care

Thank you x

 

[Aknitty]

Could you afford to fund a Libre for a few months to try and head off hypos and spot patterns to improve a1c?

How long ago were your ectopic and miscarriages (sorry to hear you went through the pain of these) as hormonal changes associated will have affected levels too.

Talk it all through with the team, be honest, and yes you are still young, but they need to recognise that you need some help here. Ask if they might prescribe Libre or lend a CGM to help.

I already have a libre and the miscarriages happened before my successful pregnancy so over three years ago. I guess they just make me anxious as I know it took a while for us. Thanks for your reply x

 

[dancer]

Do you have any idea what is causing the hypos? Has an insulin pump been mentioned? You should ask about this, as you're likely to find it would be a great help.

As for the horrid nurse, forget her. You don't need someone like that causing you even more stress. My kids were born over 30 years ago, before HbA1cs were even mentioned,. My blood sugars went haywire during my 2nd pregnancy (I'm convinced that's when I became coeliac). My lovely, intelligent daughter was born with no problems whatsoever.

When you can see a member of your team, ask about the pump. If they dismiss it, say that you require help of some kind, and ask what they suggest you should try. I would probably wait till I saw the consultant but if your nurse is excellent, you could ask her.

 

[kitedoc]

I agree with @dancer. You are told you are having too many hypos and that your BSLs have to be on target. The insulin pump is the best way to go for many people. And the criteria do include the above.
I cannot understand why your team did not suggest it. Please ask them asap because you are worried and wish to have the best chance of another baby, without the stresses.
Your first DSN sounds like an ogress. I know the type - fortunately rare but purveyors of fear and vindictiveness.
Concentrate on keeping well, obtaining an insulin pump and enjoying your 3 year old.
Worry upsets BSLs so is counter-productive.
Doing the best you can, preparing to look at how to apply for the pump (your Health Authority will have details of the process so that you up to steam by the time your DN and doctor are back.
Best Wishes and please keep posting if that helps you through the next months (and years of mothering)!!

 

[Tilly_S]

Hey I’m so sorry to hear this ,
Sounds very similar to the 3 areas Iv been to for pregnancy
Iv been diabetic coming into 18 years now I’m 25 ( wag 26 next month )
I’m pregnant 27+5 weeks with my 3rd baby ....
First was 8 years ago so things were very different back then ... second he’s 16 months old ...
my first team didn’t even question my lows I needed ambulance out to my house several times a day people would get home and I would be passed out in vommit.... he just said oh well your hba is brill

Healthy son . Pre conception wasn’t ideal but not awful otherwise I would of prob had a mc

Second son totally different area ... hospital brilliant in some way but not others .... the nurses would text me a lot and call etc I had weekly appointments they weren’t happy with my lows in pregnancy again as in all day being 1-2. Something in my meter and needing ambulances most days .... I lost my awareness but i didn’t mind that as long as I could function . .... (I could when I didn’t fall asleep )
I then joined my now current team as I move about 40 min away .... they were awful I had my baby early as they refused to do a Doppler scan didn’t even know what it was ! Do induced me at 35 weeks because of my sugars and my hba was 29 at this point (pre pregnancy 34 I think ) but my son was healthy

This time I switched back to the team I had with my second baby as out of 3 teams they have been the best so far .... my pre conception was 39 and my hba went down about 16 weeks in but is now 39 again and they have said they’re happy with that ( not meant to and cheeky I know but I make sure my sugars are high for the days leading to appointment) so now I see them two weekly ....
but even thought my hba1 is perfect 20 week scan was perfect ... at my fetal heart scan (Iv never had one before ) in London a possible issue has been picked up and I’m going back Friday to have re scan and find out if I can deliver in Brighton or London .... the consultant at London hosp commented on how well formed baby’s lower spine is which indicates very good control ... so I felt better ....

All in all everyone will have a diff opinion but I go on Doug what I know works for me in pregnancy I have not needed any ambulances this time thankgod but I am always fighting to get sugars up higher as long as I function well and fine on lows I don’t mind . My first consultant told me being low is a risk to Mum falling etc being high is the risk to the baby .

No real advice but go with your own flow and if you feel like u need more help on sugars etc hassle them
They’re so busy now they just want in and out xx

 

[Tilly_S]

I also didn’t listen to advice from them when they said a go ahead light ... I just knew I miscarry on high hba pre pregnancy (had 2 mc ) so I was low all the time for a few months got pregnant then told my team .... it must of worked for me though

 

[joanne75]

So sorry to hear of your struggles, maybe you should consider the Dexcom g6 it will alarm you before you have a hypo so you can treat and also an alarm which will tell you if ur going to be lower than 3.1 within 20mins and you can set the alarms to repeat anything from every 5mins. I am 7wk pregnant was on the g5 now gone to the g6 as there is no calibration and it certainly helps me catch those hypos before they turn into anything serious, it does cost though I self fund and it’s £159 per month so if you can afford it it’s worth the piece of mind. Good luck I hope you get things sorted

 

[ickihun]

OK. I see your urgency. I see what you are trying to prevent and yes young children are best enjoyed before complications set in or none diabetics health worries get a chance to rear their ugly head.
Stick with your current team but be assertive. Not in a stressful way but in the fact that you'd like to get the most active years enjoyed without middle age ailments. No problem in that, nor should there be.
I too wanted my children when I wasn't in my 40s but unbeknown to me I was type2 and not on the right treatment. Hence first pregnancy in late 30s and 2nd baby 6yrs later. My body did it when it was ready but definitely not stressed.
You must start relaxing and your baby will come, regardless of any hba1c. However lower carbs guarantees less aggressive bgs and way less swings.
Have you bought the book "think like a pancreas" A huge help, more than any diabetic nurse in pregnancy unit at Hastings in 2013. A nasty nurse I met too. A one who gave me very dangerous advice. Luckily I ignored her.
You know your body best.
Keep in mind what works for you. You did 9mths of pregnancy on insulin to give your your health baby no1. You're no novice. Hold your head up high. You have loads of experience with your diabetes.
These nurses can guide you but ultimately you are the one controlling things. Get behind improved bgs one at a time.
Good luck and let me know when baby no. 2 arrives.