Hello intro and thinking about pregnancy

[VKM40]

Hi all, I'm new to the group, or any other group like this actually. For a lifetime I've not let anything get in my way or felt a need to reach out, but I'd like to now. Possibly something I should have done a long time ago.

I'm not new however to living with type 1 diabetes. I was diagnosed at 11 nearly 29 years ago. I'll be 40 this year. It's still bloody exhausting, some complications along the way, some ups and downs, periods of not being in charge of it, but generally overall I think I do a good job, I think my health care team would agree too. For about 15 years I've been around 6-6.8 in Hba1c, this last year it's risen to 7.4-7.8, but I'm confident I can return to the 6s. I'm not perfect at all, but I do my best, some months better than others. I've always lived life to the fullest and been mindful of food and testing as much as I could. I've never moaned, perhaps I should have a bit more, it does grind you down sometimes eh?

I've recently started considering pregnancy, something which has been a worry for me, something I'd convinced myself I might not want to go through or even be able to.

So there are a few things here really, I guess firstly I'm saying hello, secondly keen to express my frustrations on the alarm stories and statistics I'm often presented and the targets set for me. Thirdly it would be brilliant to hear from other people who may have similar stories, a similar age, similar length of time with T1 and even similar levels of control before pregnancy. I'd welcome any sharing of stories, good and not so good, I want to be as prepared as possible. Thirdly and perhaps separately any experience of IVF? as this may also be a route we go down.

My frustration with the advice and case studies and statistics that I'm giving by pre-conception diabetic care is this... it seems to refer to all types of diabetes, when type 1 makes up only 10% of all diabetes, as we know it's different, also the large majority of pregnancy case studies I'm given are related to gestational diabetes or type 2, which apparently is the majority of pregnant diabetic women. I find it really hard to gain a true picture of T1s and pregnancy and wonder also whether my target hba1c of 5!! ( which I've never been in 29 years) is a target based on all diabetic pregnant women.

Sorry for the long post, my first and much to get through!

Good night for now
V

 

[Jaylee]

Hi @VKM40 ,

& welcome to the forum!

You've come to the right place..
I'll tag someone who can help with the pregnancy side of stuff. @azure
Giving @daisy1 a shout as well..

 

[azure]

Welcome @VKM40

Firstly, just to,say that none of us are perfect, so don't beat yourself up about not being perfect Type 1 is very wearing and we all understand the daily grind of it, year after year.

I have Type 1 and have 3 children To be honest, having Type 1 was never going to,put me off having children - it was just another thing to think about. A diabetic pregnancy is hard work. You need to be very strict about control, so that means a lot of testing. However, you're taken extremely good care of,,and I felt supported at every stage by my excellent team

The studies include more Type 1s than you might imagine. Most people posting here in this Pregnancy section have Type 1. I guess this is because Type 2 often develops at a later stage of life, but Type 1 is often present before a woman is thinking of having children. So don't think the studies aren't relevant to,you

Have you actually started trying to conceive or are you just at the planning to,start to,try stage, or even still deciding? I'd say that if you're pretty sure you want to conceive, starting thenhigh dose folic acid is a good idea. It can be taken for months prior to conception.

40 is still young But, as I'm sure you know, fertility does decline during the 30s and 40s. So if I was in your position, as well as concentrating on the diabetes, I'd also have a fertility check so you're better informed about your situation.

There's no reason why Type 1 should stop you having a baby If you feel ready for it, don't let the scary stories put you off. Remember all women have a risk of things like pre eclampsia, etc, but that ladies with Type 1 receive extra care and extra scans so any problems are likely to be spotted in good time And you may not have any problems at all anyway.

Tagging @Robinredbreast as she had a baby at a similar age to,you.

 

[daisy1]

@VKM40

Hello and welcome to the Forum Here, as tagged by Jaylee, is the Basic Information we give to new members and I hope you will find it useful. Ask questions as you need to and someone will be able to help.


BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding. They're all free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.

 

[VKM40]

Hi @VKM40 ,

& welcome to the forum!

You've come to the right place..
I'll tag someone who can help with the pregnancy side of stuff. @azure
Giving @daisy1 a shout as well..

Thanks @Jaylee!

 

[VKM40]

Welcome @VKM40

Firstly, just to,say that none of us are perfect, so do t beat yourself up about not being perfect Type 1 is very wearing and we all understand the daily grind of it, year after year.

I have Type 1 and have 3 children To be honest, having Type 1 was never going to,put me off having children - it was just another thing to think about. A diabetic pregnancy is hard work. You need to be very strict about control, so that means a lot of testing. However, you're taken extremely good care of,,and I felt supported at every stage by my excellent team

The studies include more Type 1s than you might imagine. Most people posting here in this Pregnancy section have Type 1. I guess this is because Type 2 often develops at a later stage of life, but Type 1 is often present before a woman is thinking of having children. So don't think the studies aren't relevant to,you

Have you actuall started trying to conceive or are you just at the planning to,start to,try stage, or even still deciding? I'd say that if you're pretty sure you want to conceive, starting thenhigh dose folic acid is a good idea. It can be taken for months prior to conception.

40 is still young But, as I'm sure you know, fertility does decline during the 30s and 40s. So if I was in your position, as well as concentrating on the diabetes, I'd also have a fertility check so you're better informed about your situation.

There's no reason why Type 1 should stop you having a baby If you feel ready for it, don't let the scary stories put you off. Remember all women have a risk of things like pre eclampsia, etc, but that ladies with Type 1 receive extra care and extra scans so any problems are likely to be spotted in good time And you may not have any problems at all anyway.

Tagging @Robinredbreast as she had a baby at a similar age to,you.

Thanks @azure,

Wonderful to hear you have three! Amazing. Well done. Have you been type 1 for a similar length of time too? With similar hba1c before pregnancy?

Great to hear from others and read other posts. Lots of different experiences. It's mainly personal stories i'm interested in over medical information, I feel quite up to date with that, but brilliant to find people here. Yes there is good representation of type 1s in this group, but my consultants told me the majority of diabetic pregnancies are gestational. Which leaves me wondering about the overall statistics if we're all grouped together.

I consider myself after this amount of time to be well tuned and knowledgable about t1, with good control, doctors always seem pleased, but with 29 years of having it, even with good control, there have been spells of not so good, and complications still arise even with good control after this length of time of having it. Retinopathy for example. But all in all I'm in good shape.

The idea of pregnancy for me, doesn't come as easily, maybe because of the length of time i've been diabetic, combined with being slightly older (but still young) I want to embrace and enjoy pregnancy without so much worry, exhaustion or any risk to me or baby.

Yeah I'm on folic acid, been seen by diabetic pre-conception for about a year and also been seen by fertility, the advice is IVF, which we will decide upon in the coming months if nothing happens. Or proceed with adoption.

Bye for now, and thanks again

 

[joanne75]

@VKM40 I just wanted to give you a bit of insight to my story as I am very similar to you. I have been diabetic for 29yrs Type 1 and fell pregnant in 2015 aged 39, my control was not excellent at the time of conception, but I soon got it down and was surfing around the 50 mark not great but my team was happy and it was good enough for me without constantly hypoing. I had a smooth pregnancy all they way through apart from SPD because the baby was so low and the team looked after me really well appointments every 2 weeks and you have to keep a constant diary so they can see where your sugars etc are and make changes etc. I had all the usual scans plus scans at 28wks, 32wks and 36wks. I would say you have good control and just go for it, I like you always put off having children cause of the horror stories I was told by the doctors. Yes it is hard work but it really is so worth it honestly. I am thinking of trying for another and I am 41 I just having definitely decided

 

[kitty55]

Hi @VKM40 and welcome! I am 39 (40 in Nov) and had our son last year in August - he was the result of our 3rd round of IVF (I had one baby out of the 1st round which I sadly lost early on and a failed cycle afterwards). I met my now hubby when I was 30 already and we said we'd like children when we are married (happened when I was 34) and also in a permanent position job wise (which happened in the same year we got married). Naively we assumed getting pregnant "would just happen" as it does to other people but unfortunately it didn't. We had about 4 years where we tried and tried, got tested for all sorts at GP and gynaecolgist and finally we got referred for IVF (after I had to lose about 2.5st to be eligible for NHS funding for it).
My pregnancy was easy peasy so don't get scared by all the horror stories you read online - it is perfectly possible to have a healthy normal weighing baby when you're a T1 diabetic. I was in the same shoes as you that I believed for many years given that I had diabetes for a long time (diagnosed at 2 years old) it would be impossible for me to have my own baby. Thankfully my diabetes team told me that that wasn't the case when I eventually approached them with the plan to have a baby . I am on a pump and also wearing a libre which made adjusting insulin levels way easier than without (I think). I had little Benjamin when I was 40+4 weeks so was also allowed to go full term and just sit and wait until baby made a move himself . I had an amazing team supporting me and I am very grateful I did as I know other who are struggling.
I am currently planning to have our embryo that was frozen transferred at some point hopefully early summer so obviously would be 40 when it's born (assuming it works, fingers crossed!). If you have any questions please just shout I am more than happy to help if I can xx

 

[VKM40]

@VKM40 I just wanted to give you a bit of insight to my story as I am very similar to you. I have been diabetic for 29yrs Type 1 and fell pregnant in 2015 aged 39, my control was not excellent at the time of conception, but I soon got it down and was surfing around the 50 mark not great but my team was happy and it was good enough for me without constantly hypoing. I had a smooth pregnancy all they way through apart from SPD because the baby was so low and the team looked after me really well appointments every 2 weeks and you have to keep a constant diary so they can see where your sugars etc are and make changes etc. I had all the usual scans plus scans at 28wks, 32wks and 36wks. I would say you have good control and just go for it, I like you always put off having children cause of the horror stories I was told by the doctors. Yes it is hard work but it really is so worth it honestly. I am thinking of trying for another and I am 41 I just having definitely decided

Thanks for your email @joanne75 it's the most reassuring to hear personal account from people of a similar age, similar length of time with type 1 and similar control. It's really great to hear your story!

I wish you all the best with your decision about your second child.

Keep us posted!
Thanks again

 

[VKM40]

Hi @VKM40 and welcome! I am 39 (40 in Nov) and had our son last year in August - he was the result of our 3rd round of IVF (I had one baby out of the 1st round which I sadly lost early on and a failed cycle afterwards). I met my now hubby when I was 30 already and we said we'd like children when we are married (happened when I was 34) and also in a permanent position job wise (which happened in the same year we got married). Naively we assumed getting pregnant "would just happen" as it does to other people but unfortunately it didn't. We had about 4 years where we tried and tried, got tested for all sorts at GP and gynaecolgist and finally we got referred for IVF (after I had to lose about 2.5st to be eligible for NHS funding for it).
My pregnancy was easy peasy so don't get scared by all the horror stories you read online - it is perfectly possible to have a healthy normal weighing baby when you're a T1 diabetic. I was in the same shoes as you that I believed for many years given that I had diabetes for a long time (diagnosed at 2 years old) it would be impossible for me to have my own baby. Thankfully my diabetes team told me that that wasn't the case when I eventually approached them with the plan to have a baby . I am on a pump and also wearing a libre which made adjusting insulin levels way easier than without (I think). I had little Benjamin when I was 40+4 weeks so was also allowed to go full term and just sit and wait until baby made a move himself . I had an amazing team supporting me and I am very grateful I did as I know other who are struggling.
I am currently planning to have our embryo that was frozen transferred at some point hopefully early summer so obviously would be 40 when it's born (assuming it works, fingers crossed!). If you have any questions please just shout I am more than happy to help if I can xx

@kitty55 thanks so much for sharing your story with me. It's really valuable and helps me move towards making a decision about whether to pursue or not. We've been told our IVF can't begin now until August and it's something I really really wanted to go through it before my 40th, this slight delay changes my position on it. A little, but hopefully we'll decide soon or perhaps we'll get lucky over next few months in the lead up to having to make the decision.

I'll keep you posted and my fingers are crossed for you also!

V