Unplanned pregnancy and extremely high HbA1c

[Albee7740]

Hi,

I was diagnosed with diabetes (never confirmed whether I was type 1 or 2 by my GP) and placed on metformin back in 2016. I asked to be referred to a diabetes specialist nurse but was told it was unnecessary and I just need to "not eat sugary things". I asked if I should be using a blood glucose meter to monitor myself and again was told this was unnecessary, so all I have had is the annual diabetes check up with my GP.

My last HbA1c back in April was 92 which I was told was "not ideal" by my GP and my metformin was increased to 2000mg per day and given no further advice, but was told not to cut out carbs after I asked if this would help.

I found out last Monday that I was pregnant, unplanned but husband and I were pleased. We worked out I would have been 5 weeks pregnant. I contacted my GP immediately and he referred me to the diabetic antenatal clinic and we had an appointment within 3 days. I was also given 28 days worth of 5mg folic acid as I was told that diabetics need a higher dose than normal and so I have been taking this since then.

The doctor at the diabetic antenatal clinic said that my HbA1c was extremely high and over the threshold recommendation of 86 or below for getting pregnant and that he was "duty bound to tell me that with levels that high you should consider a termination" as there was a significant chance there would be problems for the baby. The nurse that was there said that they needed to get my levels down as quickly as possible and that I would probably need to inject insulin. I was asked to keep a diary of blood glucose levels before I ate and an hour after eating over the weekend and email them the numbers on Monday, so I did this. I was left a voicemail from the diabetes nurse on Monday (missed call because I was at work) saying that she would email me the units of insulin I needed to take, but its now Tuesday evening and I have been told nothing!

I am extremely scared that my baby is being damaged with such high levels and will have congenital malformations - the more I read the more frightened I am. I don't know what to do and feel let down my all the healthcare professionals involved.

 

[PenguinMum]

I so wish I could help with advice but I cant. I think it is not unreasonable for you to feel let down by the HCPs. I hope some people who can help, who have found themselves in your situation will be along soon. Meanwhile sending best wishes and lots of hugs.

 

[Albee7740]

Thank you PenguinMum - your kind message made me cry (very hormonal and stressed at present!). I feel like every day that I can't keep my levels in range is an extra day of potential damage - upset that despite chasing up the diabetes nurse today no one has got back to me, I just need to know how many units of insulin I need to take!

 

[PenguinMum]

Thank you PenguinMum - your kind message made me cry (very hormonal and stressed at present!). I feel like every day that I can't keep my levels in range is an extra day of potential damage - upset that despite chasing up the diabetes nurse today no one has got back to me, I just need to know how many units of insulin I need to take!

I am just teplying to bump up the thread so more people take note. Stay as calm and well as you can and bombard your HCPs for help. Hugs.

 

[Cocosilk]

Congratulations on your pregnancy!

I'm not sure how much this could be applied to your situation but anything encouraging is probably welcome at this point..


https://www.dietdoctor.com/low-carb/gestational-diabetes-pregnancy

I had mildly elevated blood sugar levels from 28 weeks pregnant and onwards (gestational diabetes) and I still couldn't stop my morning fasting levels from rising in the 3rd trimester so I was put on insulin.

It's a tricky balance getting nutrition right while pregnant. If you were to embark on a low carb diet while pregnant, which makes the most sense for the blood sugar levels, you have to monitor your hydration and a few other things. For your own health, getting your blood sugar down is important.

9 months of pregnancy can feel like an eternity but it will go quickly. In the end, you'll probably just have to trust your care providers to help get you through the pregnancy.

Such a difficult place to be though, to be told to terminate ...

I hope you can find someone to guide you through. Maybe an obstetrician who specializes in low carb diets for diabetic pregnant women??

All the best with your journey!

 

[PenguinMum]

Just bumping up this thread to help @Albee7740.

 

[ringi]

You may find the book useful https://www.amazon.co.uk/Real-Food-Gestational-Diabetes-Conventional/dp/0986295000

If you do start to take inslin, then you must get advice from the diabetes nurce before changing your diet as the inslin dose is calculated based on your diet.

 

[Albee7740]

Thank you for the info Cocosilk - very much appreciated. Learning so much via reading posts on the forum. Since finding out that I am pregnant I have been reducing the amount of carbs I am eating and seem to be averaging about 11.2 over the last 5-6 days according to the blood glucose meter. Is there anything else that folks could suggest to try to get this down further? I want to give this baby the best chance possible.

 

[ringi]

Going for a short walk after meals can help, otherwise you need to remove nearly all carbs from your diet. Even then you may still need inslin, but lifestyle changes will reduce how much inslin you need.

 

[Dr Snoddy]

I can understand how worried and stressed you must be. A friend developed gestational diabetes and initially had very high blood glucose levels. She decided to ignore the advice of her doctor and gave up virtually all carbohydrates for the duration of her pregnancy. She was very healthy throughout her pregnancy and eventually gave birth to full-term twins, one over 6lbs and the other over 5lbs! The twins thrived from day 1 and are now bouncy, clever, fun 3 year olds.

 

[Ellie_Wilko]

I understand first hand how worried you must be feeling! I have 2 lovely babies from planned pregnancies with very stable hba1c's.

I had a surprise pregnancy a couple of months ago and again like you were told all of the worries about baby, miscarriage etc. It really is a scary time but I just focused on getting my sugars under control as quickly as I could and am not 16 weeks pregnant with my hba1c back within target range.

You'll get a lot of help and contact from the diabetes team and if your worried about anything, there's always someone available at the end of a phone!

Good luck and congratulations xx

 

[Albee7740]

@ringi I will definitely take up your suggestion of going for a short walk after eating - any ideas of how long or how far?

@Dr Snoddy I am cutting out carbs to virtually nothing since finding out and keeping fingers crossed, but I will let the diabetes nurse know that I am doing this

@Ellie_Wilko really good to hear that you were able to get your HbA1c back in target range in a short space of time - there is hope that this is doable!

Quick update - after harassing the diabetes specialist nurse by phone leaving multiple messages as it always goes to answerphone it seems and by email I finally got a call back this afternoon at 4pm and was told that they had emailed me on Monday, checked email, including junk mail and can see no evidence of this, but anyway, I have been told to have 2 units of novorapid before meals and 6 units of levemir before bed.

Just did the first injection and it wasn't as bad or as painful as I thought it would be - the finger prick for the blood glucose meter is worse! I injected into the top of my thigh as I wasn't sure if injecting in to my abdomen would be ok with being pregnant - does anyone know about this?

I have an appointment at the antenatal diabetes clinic tomorrow and an hoping that my HbA1c is below 86 at least as that would increase the chance that I conceived below the threshold recommended within the NICE guidelines.

 

[Rose22]

@ringi I will definitely take up your suggestion of going for a short walk after eating - any ideas of how long or how far?

@Dr Snoddy I am cutting out carbs to virtually nothing since finding out and keeping fingers crossed, but I will let the diabetes nurse know that I am doing this

@Ellie_Wilko really good to hear that you were able to get your HbA1c back in target range in a short space of time - there is hope that this is doable!

Quick update - after harassing the diabetes specialist nurse by phone leaving multiple messages as it always goes to answerphone it seems and by email I finally got a call back this afternoon at 4pm and was told that they had emailed me on Monday, checked email, including junk mail and can see no evidence of this, but anyway, I have been told to have 2 units of novorapid before meals and 6 units of levemir before bed.

Just did the first injection and it wasn't as bad or as painful as I thought it would be - the finger prick for the blood glucose meter is worse! I injected into the top of my thigh as I wasn't sure if injecting in to my abdomen would be ok with being pregnant - does anyone know about this?

I have an appointment at the antenatal diabetes clinic tomorrow and an hoping that my HbA1c is below 86 at least as that would increase the chance that I conceived below the threshold recommended within the NICE guidelines.

Good luck at the antenatal clinic tomorrow, that should help, and if needs be go with a list of questions you have, so you don’t leave thinking you missed something. I am always better if I have a plan and feel like I know what is happening.
My last pregnancy was diet controlled until my numbers started rising and even with walking after meals etc couldn’t get it back down so I went on to insulin. The main focus is on the health of the baby, that seemed to be how most decisions and appointments where done for me. I had really brilliant care, saw diabetes nurses in the drs, saw them in the hospital along with consultant, and diabetes consultant and midwifes. Monitoring was really good and regular and I had growth scans every 2 weeks near the end. I declined the tests they do at the start of the pregnancy, as I had with my other child, but it’s very personal and you should be offered lots of tests and care. You have a right to say yes or no to things. Think with any pregnancy the more in control you feel the better. Best of luck and huge congrats on finding out you are expecting! Exciting!

 

[Rose22]

Oh and injected insulin into my thighs... but nurses will show you all this.

 

[Albee7740]

Woke up this morning and fasting blood sugar was 9.9 - although this is still too high it feels like a success as its the first time I have been into single digits since I started monitoring my blood sugar.

Thank you for the positive stories, it is really helping me. I keep on having moments of feeling convinced that I am no longer pregnant as I haven't felt nauseous in a couple of days whereas I had been feeling sick before - guess I won't know anything until the 12 week scan. I asked for an earlier scan at the antennal appointment last week but was told it would be pointless which made no sense to me as I had a 6 week scan with my daughter 8 years ago to check for a heart beat.......

 

[Albee7740]

@Ellie_Wilko - just wondering what steps you took to get your numbers back in range so quickly and if there is anything I can learn from your journey?

 

[Alia5]

Hiya I have posted in a few groups but saw that this thread is similar to my situation too.. The more advice the better. I hope you all are doing well I'm in pretty much the same situation. I am type 2 diabetic and recently found out I was pregnant at around 3 weeks. My hba1c was checked in May and was 87 so around 10% so very high. I am on tablets only.. atm 4 a day. I'm controlling it as much as I can but I think they will put me on insulin soon. I've cut out carbs as that's the only way I can keep my sugars close to the bench marks...but tbh even then they are slightly higher than they should be. They told me not to cut out csrbs but im too scared to eat crarbs now. My first pregnancy I had gestational diabetes but had a healthy boy. Unfortunately the diabetes didn't go. I'm so scared as before I knew I was pregnant I was eating like crazy and wasn't checking so I know the first 3 weeks of my pregnancy my sugars were sky high before I found out I was pregnant . I feel so guilty and scared now as everywhere I read that birth defect or damage occurs early on in first few weeks etc. And I just feel so down thinking have I already hurt my baby by being careless. Sorry feeling very emotional. I feel so unhappy in this pregnancy because I'm so scared to eat and all I think about is that I have caused problems already. I have wrote in so many forums to find out if there are people out there that have had healthy babies in similar situation but never get a reply. I will obviously do whatever I can now to keep sugars down. Sorry for the long essay but i am glad to have found this thread. Any advice would be really appreciated. Best of luck to u allx

 

[Albee7740]

Hi - just a quick update. We had a scan today and there was no heart beat. Heartbroken but it was just not meant to be. We will be trying again and so I will be working hard to get my blood sugars into a 'safe range' to conceive.

Thank you to everyone who offered me support and advice at a really difficult time it was very much appreciated.

@Alia5 - sorry I've only just seen your messages and know how worried you must be feeling. It sounds as though you are already doing your best to get your blood sugars in range. I am thinking you and wishing you the best xx

 

[Dr Snoddy]

Hi - just a quick update. We had a scan today and there was no heart beat. Heartbroken but it was just not meant to be. We will be trying again and so I will be working hard to get my blood sugars into a 'safe range' to conceive.
I am so sorry and I do hope that you have a successful pregnancy in the future.
Thank you to everyone who offered me support and advice at a really difficult time it was very much appreciated.

@Alia5 - sorry I've only just seen your messages and know how worried you must be feeling. It sounds as though you are already doing your best to get your blood sugars in range. I am thinking you and wishing you the best xx

 

[Ellie_Wilko]

Hi - just a quick update. We had a scan today and there was no heart beat. Heartbroken but it was just not meant to be. We will be trying again and so I will be working hard to get my blood sugars into a 'safe range' to conceive.

Thank you to everyone who offered me support and advice at a really difficult time it was very much appreciated.

@Alia5 - sorry I've only just seen your messages and know how worried you must be feeling. It sounds as though you are already doing your best to get your blood sugars in range. I am thinking you and wishing you the best xx

I'm so so sorry for your awful news and hope you have all the support you need xx