Diagnosed with suspected T1 at 9.5 weeks. Really scared and anxious about HbA1c :(

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MandyS

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Type 1
Hi there,

I apologise in advance if this is a long winded post. I went for my booking appointment two weeks ago and they called me the next day because my random blood glucose had come back very high (15). I was then sent for a glucose tolerance test the following week which showed fasting level to be 14 and 25.something two hours after the test.

They called me in to see the DSN the next day who explained that with levels like mine, they suspect it is T1 and that it may have started before pregnancy. She sent me for a HbA1c test and it came back as 10.4%.

Well we went to see the diabetic consultant yesterday and he gave me a very bleak picture. I had already read about increased risks of neural tube defects but as soon as we entered the room, he said with a level like mine I was looking at a 1 in 10 chance of a major abnormality. He said that some of these abnormalities don’t get picked up until after birth and sometimes not til a year later. He threw around “brain damage”, “severe learning difficulties”, “major heart problems” and I burst into tears.

We already lost a baby last March to a rare chromosome disorder (T13) which has a 0.02% chance of occurring and had been told it was just “bad luck”. And now here I am again in the bad luck category. The consultant said I am only the third woman in his whole career who he has come across to be diagnosed in pregnancy (of the two other women, one chose to terminate and the other went through with the pregnancy).

I am absolutely devastated and just don’t know what to think. We have had a reassurance scan at 7, 9 and 10 weeks (due my anxiety because of last time) and everything seemed to be okay for the pregnancy at that stage.

We have our 12 week scan on 9th Feb with the fetal medical consultant who dealt with us last time. I am hoping she can help give us some more information on the risks.

I guess what I would like to know, is are there any of you out there who conceived with a HbA1c similar to mine? What was the outcome? Can anybody think of good questions I can ask the consultant?

On top of all this, there is just the getting used to the actual diagnosis and what it all means. I hate needles but that has gone out of the window since I have to inject 4 times a day! I started insulin just over a week ago and my levels have taken a while to come down to between 4 and 7. I am just so scared and worried :( I haven’t been able to concentrate or stop scouring the internet since this all started.

If you have got this far, thank you so much for reading. I have been trawling through previous posts and it seems like a really helpful and supportive forum.

Thanks, Mandy x
 
Hi Mandy I'm sorry that I haven't got any answers because I've never been pregnant but I am certain that there will be others here who can give you excellent advice. Wishing you all the best with a very successful pregnancy x
 
Hi Mandy, really sorry to hear about your type 1 diagnosis, and what awful timing for you. I am not type 1 myself, my son is - but I do know what a shock it is to be diagnosed and how hard things are in the beginning, it's a steep learning curve. I hope you are getting lots of support from your hospital team to help you adjust your insulin doses and reduce your Hba1c to a safer level.

Type 1 ladies are advised to have good control over their diabetes before trying to conceive, but inevitably there will be plenty of people for whom pregnancy was a happy accident, and you definitely aren't the first to become pregnant with a raised Hba1c. Bear in mind too that the Hba1c is a moving average - if you had had one taken a couple of weeks earlier it could have been much lower, as your pancreas could still have been putting out some insulin. Easy for me to say, but try not to worry about things you can't change, and focus on controlling your blood sugars as well as possible (with help from your team). A 1 in 10 chance of an abnormality sounds frightening, but also its a 9/10 chance of a perfectly healthy baby. Sending {{{hugs}}} and best wishes - so sorry this worry is spoiling what should be a joyful time for you xx
 
Hi - and I'm sorry you're here having suddenly joined the Club that no one - pregnant or not - ever wanted to join.

Let me be honest here - even if you had not been pregnant - you would still be frequently in tears and in a state of permanent panic when you're not actually in tears - in other words - you are PERFECTLY NORMAL!- and it's far far better to let it all out whenever you need to, however you need to - rather than bottling it all up and trying to batten down the lid.

And though I think 'that doctor' needs retraining on his basic psychology ability (ie there would have been far kinder ways of telling you all the ruddy snags) - you can't complain that 'nobody told you that (whatever) could even happen' so now you know. BUT - that doesn't automatically mean that the worst WILL happen - as Redkite says - a 10% chance of something happening, also means there's a 90% chance it won't!

So ....... we have to try and put the 10% in the background whilst we all do our best to get you firmly in the 90% group, don't we? - and the main person who needs to actually try and ensure you achieve that - is you yourself. The more determined you are to try and achieve this, the more successful you are likely to be.

Do not ever be afraid to ask ask ask and ask again, until you understand completely, everything that your medical team advises you. If you think of questions after you've left the hospital try asking on here but in any case, write the query down on a list to get 'official' answers next time you see them. Don't be fobbed off by 'I'm sorry I don't know' - instead reply with, Well its a shame you don't know but I need to - so please either go and find out while I'm here or arrange for me to see someone who does know! Within reason of course - the ladies who do the ultrasound scans can't advise on diabetes matters - but they can answer questions about the scans and vice versa.

Good luck with your pregnancy anyway - nobody can be certain everything will be fine - but with a 90% chance of it that's pretty good odds in your favour, I'd say!
 
Ok firstly the consultant is an arse and shouldn’t be allowed to talk to pregnant people!!!

Secondly - congratulations on your pregnancy. A time for you to be excited not terrified.

You’ve found out early that you have type 1 and also your levels are coming down beautifully so well done!! Cannot imagine what it must be like to have it thrown at you especially given your previous experience in March. Please try not to worry (so much easier said than done).

I’m 30 weeks pregnant, type 1 with my second and whilst my hba1c is now good when I fell pregnant it was above the recommended levels. Also I was unlucky I guess that I became insanely insulin resistant and battled high blood sugars for most of my first trimester - does it worry me? Yes, honestly it does but do you know what - we can only do our best and hope for the best.

There are some positives you should be aware of now - you will be classified as high risk, BUT this means more scans, loads of care and constant help. For me these are positives. My scans this time round have included checking for everything and so hopefully they’ll be able to put your mind at ease.

Keep posting. Keep learning but stop looking up possible baby outcomes (I’ve done it - sent me into a terrified spin). Just do your best and that’s all anyone can ask.

I have everything crossed for you.
 
Thank you all so much for your replies. It helps to feel less alone! I went to see the GP this morning, she has signed me off for 4 weeks to get my head around everything and help get the diabetes under control.

I just feel panicked every time it is above 7. I have been told to inject twenty mins before each meal and test 2 hours later. I feel like I have been bugging the DSN calling her every day, but I guess she must be used to it? They have been adjusting my insulin levels here and there so hopefully that will help. And I know this is probably a silly thing to be sad about given everything else, but I’m so sad at no more chocolate or cake :( because my doses are so fixed at the moment I guess I’m not really allowed any “treats”.

Thank you for your kind words, Redkite. I didn’t mention in my first post, but my brother is T1 too, diagnosed at 11yo and he is now 27. I remember how upset my mum was and how much she had to deal with, so I hope you are finding it okay! I am 33, and naively I didn’t even know people could be diagnosed later on. Now I know it can happen at almost any age!

Thank you so much grainger and Jenny. I think I will just have to wait and see what the scans are like at hope for the best. I can’t even consider the thought of a termination right now when we don’t even know if there are any problems (although still stressing about what might not show til after birth). And you’re right, it is a positive that I will be looked after and monitored so closely. All the best with your pregnancy, grainger, I hope you’re managing to enjoy it.

It all just feels like a bit of a surreal bad dream at the moment, but I am going to try and stay positive unless proven otherwise!

xx
 
Sending you a big hug Mandy- as Jenny says- concentrate on the 90%- and definitely stop internet surfing there are so many idiots out there who don't know what they are talking about but sound like they do- I work with some of them :confused:
 
Hi @MandyS - just to reiterate what others have said - congratulations on your pregnancy! Your consultant needs stringing up for the way he's given you this information. My hba1c was in the 90s when I fell pregnant with my son (so around 10% as well) and he was born perfectly healthy at 35 weeks (although 8lb 11 so he was pretty big!). It is very easy to become overwhelmed with all the things that *could* go wrong, but you will be closely monitored throughout your pregnancy. I also went for an additional scan that looked at baby's heart in more detail so this may be worth asking your consultant about. You have done really well to get your levels down to between 4 and 7, especially with pregnancy hormones flying around! Try not to get too stressed if you go over 7 - remember, even non diabetics go outside of 'normal' range from time to time x
 
Hey @MandyS just wondering how you are getting on?
 
Hi grainger,

Thanks so much for checking in on me 🙂 I’m okay thank you, it’s been a whirlwind couple of weeks.. I feel like I live at the hospital! We had our 12+1 scan with the same fetal medical consultant who saw us last time when things went wrong. She said was super happy with how the baby looks, she said she would have seen if there were any major abnormalities and nuchal fluid looks thin, nasal bone’s there etc and heart looks okay for this stage. She seemed quite incredulous that the diabetes consultant had even suggested termination! She’ll scan me again at 17 weeks to look at the heart in more detail so fingers crossed.

Our combined screening test has come back high risk for T13 and T18 but the consultant assured us that this is just because of my previous pregnancy and that it’s highly unlikely. We have also had bloods taken privately for non invasive prenatal tests, and should receive the results in the next couple of days so that will tell us much more.

To be honest, although im obviously relieved about the scan etc, I just feel too scared to get excited yet about this pregnancy. I keep waiting for something to go wrong (I guess maybe that’s normal after a loss?) I think maybe once / if we get past the 20 week scan I might let myself relax slightly!

Oh and my GADS (?) blood test came back very high, so it’s definitely type 1.. which I had expected anyway I think.

I saw on your other thread that everything’s looking good with baby! That’s great news.. so pleased for you, sounds like you are on the home stretch now 🙂 I can definitely understand overthinking every little thing, but I think you’re right they definitely would have mentioned if there was a concern xxxxxx
 
MandyS said:
Hi grainger,

Thanks so much for checking in on me 🙂 I’m okay thank you, it’s been a whirlwind couple of weeks.. I feel like I live at the hospital! We had our 12+1 scan with the same fetal medical consultant who saw us last time when things went wrong. She said was super happy with how the baby looks, she said she would have seen if there were any major abnormalities and nuchal fluid looks thin, nasal bone’s there etc and heart looks okay for this stage. She seemed quite incredulous that the diabetes consultant had even suggested termination! She’ll scan me again at 17 weeks to look at the heart in more detail so fingers crossed.

Our combined screening test has come back high risk for T13 and T18 but the consultant assured us that this is just because of my previous pregnancy and that it’s highly unlikely. We have also had bloods taken privately for non invasive prenatal tests, and should receive the results in the next couple of days so that will tell us much more.

To be honest, although im obviously relieved about the scan etc, I just feel too scared to get excited yet about this pregnancy. I keep waiting for something to go wrong (I guess maybe that’s normal after a loss?) I think maybe once / if we get past the 20 week scan I might let myself relax slightly!

Oh and my GADS (?) blood test came back very high, so it’s definitely type 1.. which I had expected anyway I think.

I saw on your other thread that everything’s looking good with baby! That’s great news.. so pleased for you, sounds like you are on the home stretch now 🙂 I can definitely understand overthinking every little thing, but I think you’re right they definitely would have mentioned if there was a concern xxxxxx
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So glad to hear things are going well. And sounds like they are now taking great care of you. Bet it’s been lovely being able to see your baby and 17 weeks will be here before you know it. If you are like me you’ll get another scan at 20 weeks then again at 28,32,34 & 36 so you’ll see your little one a lot!

I know exactly how you feel about not getting excited due to fear. I’m getting better but i still get so incredibly worried at times. I think it’s a completely natural reaction especially if you have lost before, but your 12 week scan sounds nothing but positive so focus on that!

Keep us updated. How you finding the type 1 diagnosis now? Hope you are being well looked after and doing well with your sugars too. Xx
 
MandyS welcome to the group. Cannot imagine how you feel. We got pregnant without planning, my hba1c was 7.1 (old money) so it should have been better, they weren't even bothered about it and I never had such harsh treatment, I did get such a talk when I was first diagnosed but not when pregnant and its just bad timing with you not anything you have done wrong. I had a hellish pregnancy and I could never do it again, but we both survived it which I didn't think would be possible. She is the most healthy child I have ever known, shes is rarely ill compared to the kids in her class. Shes 7 and shes a total book worm, just the best person.
We are all here to support you, and it sounds like you are doing all the right things and your levels are quite good, just take each day as it comes. There is a saying about levels which I am sure someone will help me with, about how the result is information not a score.
Diabetes really is pants, but it doesn't mean you cant live a healthy, wonderful and long life.
Take care, and try to keep your chin up!
 
LOL - my granddaughter might have thought your diabetes was a good trade in for all the probs she had in pregnancy - I think she had everything that could go wrong, go wrong including being told the baby was well below the normal size etc - when she did actually give birth it took her about 20 minutes and the babe was and is 100% AOK.

So - even a very ordinary normal non-D 20 yo whose body should have been in A1 condition to bear children - can have all sorts of ruddy probs - and all you two have, is T1! LOL

It's ruddy hard I know NOT to agonise over everything under the sun when you are pregnant always - but you WILL get there mate honestly you will. And hell - if you can manage your BG through pregnancy - without it you'll absolutely be able to - won't she @grainger ?

And yet - the rest of us who aren't pregnant - have the absolute effrontery to moan about it sometimes! 😱
 
Thank you so much both of you! I’m doing okay.. just about. I’ve been getting really upset about having diabetes, don’t think the hormones are probably helping with that. Just been feeling really teary about it all. And I’ve been having SO many hypos each day.. which has made me borderline obsessive about checking BG levels what feels like every 5 minutes! They suggested changing my insulin ratio slightly at my appointment today so I’m hoping that will help.

I know I will get used to it (I have to anyway!) but it all feels a bit overwhelming at the moment. And I need to stay away from Google.. I’ve scared myself reading about potential complications etc :( But all of you lovely lot on here seem to be managing well and I’ve been learning lots through my lurking!

Everything seems to be okay with the baby.. we had a scan again yesterday and consultant said everything looks exactly as it should so that was a huge relief. I think I held my breath through the whole scan. Although now it’s sinking in that I might actually end up with a baby!

Thank you Phoebe for your honesty about your pregnancy.. I’m sorry it was awful but glad you have your lovely little one. And Jenny your granddaughter sounds like she had a right load of stuff to deal with it! Glad she and baby were okay in the end.

I think I do have to remember that BG levels are a result not a score.. it seems so easy to find a way to blame myself all the time. Need to try and stop doing that so much!

xxxx
 
You cannot be blaming yourself. As my nurse said yesterday BG can be impacted by emotions. People forget that, they think its all what you eat/exercise and medication, but it can be just because you feel a certain way. Laughing too much can cause hypos.

Give yourself a bit of break.

Every time I went below 5 I would be sick! The whole pregnancy! Its caused by all the energy growing baby, that child just drained it all, I had to eat about every two hours. 3am I would get massive drop so I even had to eat in the night!

Keep your chin up and we are here if you need us. We haven't always been in the same situation but we do get how hard it is.

xxx
 
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