Is it worth the risks?

[RAH79]

Hello All,

I've been a type 1 for 26 years and I'm 36yrs old. My husband and have been talking about starting our own family. I know I've left it a bit late, but it has only been recent that we could say our lifestyle, jobs and our own home could make it possible for us to start a family. In addition, we've talked about it many times in the past, but my husband has a hereditary condition and we'd talked ourselves out of it. However over the recent year I've been consumed with wanting to have a family and therefore set about looking into it.

Naively, I didn't realise how difficulty it is for a Type 1 during pregnancy and the added risk (my hat goes off to all you ladies who have been through all the testing, hypos and delivery, let alone the shocking stories of how you've been treated by healthcare professionals!). So far, I've done alot of reaserch and downloaded the useful Diabetes and pregnancy walk through which has been insightful. In total, I've been planning this for 3 months already i.e taking 5mg folic acid and really trying hard to get my HbA1c down. It was 52 December 2014 and 57 June 2015 and at the moment my BG have been averaging around 6 before meals and can go up to 10 after meals. I have been having unexplained highs in the morning i.e. Tuesday night I went to bed at 5.9 but was 16.3 by the morning. I've read posts here which suggest that this might be due to Dawn Phenomenon? But not sure how to correct this and I know it's not my Levemir as the BG keeps steady for the rest of the day (I'm not on a pump). So apart from this and a few blips over Christmas, I have managed to pull it back.

Anyway, I went to my GP last Tuesday to get another HbA1c done and I had my results today. The nurse said it was 58. I'm devastated...I've been trying really hard, and now I don't know if it's just too risky. My husband and I agreed that if nothing happened by March I wouldn't chance it any longer as my age goes against me as Id be 37yrs old by then and including the potential risks involved in a Type 1 pregnancy as I've previously had malculopathy which has since cleared with no requirement for laser surgery.

Has anyone else been pregnant with this level HbA1c and not had complications? How long would it take to bring it down to 43? Am I asking for trouble in light of the added risks?

Grateful for any advice x

 

[azure]

I know this isn't exactly answering your question about risks, but I have 3 children and they were worth all the work and worry. There are ladies here who've had babies in their 40s - don't write yourself off yet!

Regarding your highs after food, do you correct them? I had to do corrections in pregnancy and I 'practised' good control beforehand by doing corrections for any big spikes. Could you carefully try this to get your HbA1C down? If you're on injections, a half unit pen is good to make careful adjustments.

Is your blood sugar always high in the morning? When do you take your Levemir? Do you test your blood sugar in the night?

Getting in range for conception and during pregnancy takes work and monitoring all the time. You work to keep the sugars in range - so lots of testing and probably corrections too. It's a very strict kind of control and that's what you need to get your HbA1C down. It's a very active thing and needs a lot of input - that is, constant work rather than carrying on as you did before, if that makes sense?

There are ladies here who've had high HbA1Cs and given birth successfully, but obviously It would be good if you could get it down. Have you considered a pump? Has your DSN offered any help in getting your sugars down?

 

[November1115]

Hi I wouldn't be too worried about getting pregnant as (in most trusts) you will be cared for by a team of specialists incl obstetrician midwives dietitian etc..... until you are safely delivered. Good luck and take care x

 

[RAH79]

Hello Azure

I'm on a low carb diet and I really enjoy eating (what my husband calls) "Rabbit food" lol. It doesn't always go high after meals but I find the evening meal creeps up to around 10mmol I do a correction does which brings it back nicely to around 5 - 6mmol but then jumps back up by the morning. I do my Levemir at 6pm each evening. I've learnt that if I do another small correction does in the early hours i.e 2am it helps to bring it down to 11 ish but I don;t want to do anymore in case it suddenly drops and I need to get up early for work in the mornings.

I have read that there is alot of testing involved (I've seen a couple of posts stating that they do up to 15 tests per day!), that is alot. but I'm doing around 6 to 8 tests at the moment per day.

I hope you don't mind me asking you this and tell me to mind my own business if so, but does any of your children have health problems or are they diabetic too? Did you have any problems during your pregnancies?

 

[azure]

My children are all fine I didn't have any problems during my pregnancies except for one where I got excess amniotic fluid. They just monitored it and it was ok. I think that was because I didn't understand so much about diabetes then, so I was missing highs. None of my children have diabetes

I've never used Levemir so I can't give advice about that, but it does sound as though your main problems are the evening and nighttime highs. If you could sort those then it's very possible your HbA1C would drop I suggest you start a thread in the Type 1 section asking for advice re those highs, if you feel Ok doing that.

I eat approximately 180g carbs a day. Before conception and during pregnancy I concentrated on good foods - healthy fats, veg, fruit, eggs, good protein. I still had treats but tried to eat lots of nutritious food. I feel that helped my health in pregnancy. I felt good, and my last pregnancy was my easiest, I'd say.

 

[RAH79]

What was the highest HbA1c you had during your pregnancy?

 

[MH2010]

@RAH79 I had a shockingly high HbA1C when I was pregnant, cant remember how high but high enough that I had DKA a few times and was rushed into hospital.

My daughter is a diabetic as well.

As long as you are trying to get better control and are taking folic acid then if you want it bad enough, dont let your age stand in your way!!!

My mum was 38 when she had my little sister age is only a number!

 

[RAH79]

MH2010, that must have been tough managing your own diabetes as well as your daughter's. I couldn't help but notice your signature, 120 down to 40 in 7months? How did you manage that in such a short space of time? Was that when you were pregnant? How old was your daughter when she was diagnosed?

I know what you mean about the age, but there is a lot of research that suggests the older you get the more risks there are you yourself and the baby...I think it's the reason why I've waiting so long because I've talked myself out of it each time due to the risks. I've never had much luck so it worse case happens it's usually me! LOL

 

[Pitsgate]

Hi there. I have much the same years on the clock as you - had my first baby in 2014 when i was 35 and am now pregnant (very early days) with 2nd.
In 2013 my hba1c was bit over 7 on conception so not perfect, but my diabetes doc felt that it was good enough (had been round that region for months). Dropped it down throughout the pregnancy (to about 6) and had no complications.

Re achieving targets: being anal about the carb counting & injecting before eating (20min for me) helped with the post food spikes. And boringly, the fewer carbs you eat, the less room there is for error. Sorry if sounding basic!
Re dawn highs: Sorry cant help with this. I found it impossible to get a working system with long lasting insulins (levemir, lantus, 1 or 2 injections...). It just is so much easier to control the different insulin requirements throughout the day when on a pump (my lowest night basal rate is half of the top day one). But people do manage it...

Worth the risk if you want it, I'd say. And you get used to testing like a maniac, no point counting the strips used...
The possibility and fear of complications is scary but a good team to support you makes a difference. Do you feel confident with yours? My local hospital diabetes team kept on saying 'no, your results are far too bad - come back in 6 months and we'll see if then...', and yeah the numbers were **** but I got no useful advice on how to actually improve them. Finally got fed up, got a referral to another hospital which had positive t1 pregnancy reviews online and within months my hba1c had dropped from 9 to 7 (bit too fast but it just happened). The pump was a major part of it (they immediately said I filled the Nice guidelines & got one very quickly) but so was the really amazing support. Good luck!

 

[1Sarah1]

Hello!
So I've been diabetic since I was 2 and 35 now.
I was on a pump for both my pregnancies after suffering from the dawn phenomenon seriously. My dd is now 2 and unfortunately diagnosed type1 in December. I got severe pre eclampsia with her and she had to spend time in special care for her lungs as she was prem (35w) and had no blood sugars.
My twins who have just turned 4months-my son crashed at birth and had to get resuscitated-he had to have life saving surgery as he had problems with his lungs from a hernia. My twin daughter we think she might be lactose intolerant now. They were born prem too 35w.
Anyhow I had superb hba1c according to my doc especially for my twins - I was 33 just before I had them and max was in early 40s. These issues could happen with anyone and feel at least I did what I could to minimise the risks.

On the dawn phenomenon-so have you set your alarm and tested in the night? Try at different times/every hour from midnight onwards-especially about 3am. (Maybe not all in the same night!). This will be the only way you can see when you peak? What happens if you increase your levemir?

I strongly recommend a pump to get this under control as I never could pre pump.
Testing is the key but for me it gave me peace of mind. Plus the joy of night feeds now (it is 4am!) means I can check them in the night.

Anyway need to get sleep before I'm up again!
Good luck x

Ps it's defo all worth it x

 

[Deleted member 83869]

What was the highest HbA1c you had during your pregnancy?

Don't mean to intrude on your post but when I fell pregnant my hba1c was 83 not ideal but like my consultant said it could be worse I am now 19 weeks pregnant nearly and my hba1c was 68 at the start of December! And like others have said you will be under strict management and care when pregnant my midwife and consultant are great I see my consultant weekly...well not at the moment as she is in India!! Good luck and never give up xx

 

[ArtemisBow]

Hi RAH79

Do tell your DSN about your family plans and the fact that with the long acting you are on, you can't get your hba1c down. There may be other long acting insulins you can try or they may be able to move you to pump therapy to help. But importantly it is a group effort to manage your diabetes to allow you to lead a normal life (or at least as normal as possible!) so they should be helping you achieve the levels you need. There's a lot of work for you too, but it's not all on your own.

 

[RAH79]

Thank you for all your response. It is reassuring to know there are others in the same position as me, but imho I'm concerned about some of the complications some of you have encountered if not to yourself but also your child.

Following your advice, I booked to see my DSN and had an appointment with her last Wednesday. It wasn't very encouraging, I asked her for some honest opinions and she said that my Hba1c isn't far off so wouldn't take long to get on target, but when I asked about risks and complications she said that it's not an easy pregnancy (which I already knew), but she said there have been patients with a brilliant Hba1c and have still had issues. When I asked what they were she gave examples such as cardiac issues, cleft lip, diabetes, developmental issues. Plus given my age she said I would be at a greater risk...

I gotta be honest, I've been through a roller coaster last few weeks, what with getting excited about the idea of having a baby, then being knocked back when reading risks about my age and now the added risks of the diabetes, plus my husband's condition. I think I would be asking for problems if I went ahead....the prospect of having a baby just seems bleaker and bleaker...I hate this condition so much I feel really down. Interestingly my DSN said in the 1950s diabetes were not medically advised to have children! I didn't know that.

I'm having really bad dawn phenomenon at the moment and my DSN took a look at my readings and she's not happy as I'm having too many lows. I'm feeling really frustrated because it's not like I'm eating chocolate bar after chocolate bar, I eat really healthy, veg. salad, chicken, fish. I am trying my best but I can't control what happens in my sleep! I'm going to bed around 7mmol and waking up as 18mmol +. I feel like ****. I now have to have a CGM fitted next week and apparently there's a big push for diabetics in Wales to go on a pump because we are way behind England, so when I was turned down a pump last year because I was not suitable, all of a sudden they are throwing it in my face. I also have to see my Dietician now because my DSN did not understand low carb diets and believed my hypos were because I was giving myself insulin due to protein (I did explain the ratio of injecting using half the amount of Protein as carbs on my bolus advisor, but she thinks that is wrong). I'm sorry but I just feel that my health it determined by statistical figures instead of what I need / want! With no guarantee a pump is going to improve things I just feel like having a baby is not gonna happen for me...

Rant over....

 

[Deleted member 83869]

The complications don't happen to everyone...I don't have any!

 

[Deleted member 83869]

And if you want a baby that much then you will be able to do it

 

[azure]

Only you can make the decision @RAH79 But remember statistics are just that. I have Type 1 but because of other issues my last pregnancy was classed as very high risk. In actual fact, it was my easiest pregnancy, and my baby is fine.

The point I'm making is that you never know what'll happen. Did you know, for example, that the majority of babies with Downs are born to mothers under 30? Because of my diabetes all my children had a higher risk of cleft palate, etc, yet not one of them had a problem - yet my friend, with no health problems at all, had a child with a severe cleft palate.

One thing I will take issue with though is the idea that you're old at 36. That's not old! My aunt had her last child at 48! A friend has just had her first baby at 39! I had to go back and check your age when I read that because I thought I must have misremembered it!

Nobody knows what life will give us. Don't let the naysayers put you down. Yes, women with diabetes often didn't have babies in the past, but that was more than 60 years ago! We've moved on now and know more and can do more to help diabetic mums. Make the decision that YOU want to.

I'm going to tag @Robinredbreast here because I think she had a child when she was older than 35.

As for your morning highs, a pump should help a lot with those. You'll get much better control of your basal. My pump basically sorted my Dawn Phenomenon and nocturnal hypos.

Don't be down - be determined. Think about it and make a decision that you're happy with

 

[RAH79]

Ok, thank you. I need to have a think about it and clear my head....it's a lot to take on board, but I do appreciate you advice and suggestions x

 

[ealingr]

That's great news on getting the CGM fitted!

Maybe you can give yourself a few weeks of not thinking about a potential pregnancy and just focusing on getting your blood sugars sorted?

If you can address the blood sugar issues and get your HBA1C down, it might be easier to get a clear view on the way forward?

 

[ArtemisBow]

I do agree with what others have said regarding statistics - as a diabetic the chance of certain defects is higher than the background population if you have a high hba1c, but that is not a guarantee that defects happen, nor does it mean non-diabetics are immune from them.

Consider heart attacks - being overweight or a smoker increases the risk, but there are obese people who smoke 40 a day and have never had a heart attack, and then there are fit young footballers who drop on the pitch.

Whilst we do all we can to minimise risks, they can never be fully eliminated. Every pregnancy has the potential for problems. All you can do is minimise any factors you have influence over, and hope for the best. So if having a baby is what you want, work out which things you can improve. You can't go back to being 25, so there's no point worrying about that one - focus on the other factors, like your really healthy diet! And I hope the CGM helps with improving your BG levels.

 

[Robinredbreast]

Only you can make the decision @RAH79 But remember statistics are just that. I have Type 1 but because of other issues my last pregnancy was classed as very high risk. In actual fact, it was my easiest pregnancy, and my baby is fine.

The point I'm making is that you never know what'll happen. Did you know, for example, that the majority of babies with Downs are born to mothers under 30? Because of my diabetes all my children had a higher risk of cleft palate, etc, yet not one of them had a problem - yet my friend, with no health problems at all, had a child with a severe cleft palate.

One thing I will take issue with though is the idea that you're old at 36. That's not old! My aunt had her last child at 48! A friend has just had her first baby at 39! I had to go back and check your age when I read that because I thought I must have misremembered it!

Nobody knows what life will give us. Don't let the naysayers put you down. Yes, women with diabetes often didn't have babies in the past, but that was more than 60 years ago! We've moved on now and know more and can do more to help diabetic mums. Make the decision that YOU want to.

I'm going to tag @Robinredbreast here because I think she had a child when she was older than 35.

As for your morning highs, a pump should help a lot with those. You'll get much better control of your basal. My pump basically sorted my Dawn Phenomenon and nocturnal hypos.

Don't be down - be determined. Think about it and make a decision that you're happy with

Hi, yes azure is correct, I was 42 1/2 when I had my daughter, tbh I was apprehensive, but my daughter is now a healthy and a happy ( for a teenager, most of the time !!) beautiful young woman and I wouldn't change a thing for the all the money in the world, she is my best diabetes moment ever.
Good luck and all the very best.