Pregnancy/preconception - Issues or unrealistic expectations?

Doctorwhobbc

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Hi all,

My wife (T1) and I are looking to conceive our first child in the next few months and want to do everything we can to ensure a healthy pregnancy. We're both from different backgrounds (the USA and New Zealand) and are trying to get to grips with what is/isn't offered on the Scottish NHS.

She has reached out to the GP, who has refused to do any blood tests (incl. a recommended test on thyroid function) since she is otherwise healthy. Instead, the GP said to contact the local diabetes team with extra questions. The diabetes team said since her A1c is good (last measured 18 months ago — "no need" to get it retested), there isn't any need for an appointment and to go back to the GP with any questions. They even said there is no need to take folic acid before pregnancy, despite the NHS's own website (and US/NZ counterparts) recommending folic acid pre-conception.

I don't want to sound ungrateful, and I understand that US healthcare is quite "extra" and unnecessary; BUT, it seems like the GP and diabetes team don't want to do any tests or provide any information ahead of time. There are even other little things, like the US doctors recommending a toxoplasmosis test (since we have several cats), but the GP here saying that it isn't offered. The conflicting information is very confusing!

My questions are:
  • Do we have unrealistic expectations?
  • Should we be getting more from the GP/diabetes team?
  • Are there avenues outside the NHS to get extra reassurance/care? E.g. private endocrinologist, testing, etc.?
  • Have you had a pregnancy with Type 1 diabetes? What was your experience?
Thank you all so much.
 
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dje55

Active Member
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Type of diabetes
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Hi there,

Your diabetes team should offer pre conception care. This is usually bloods to check current health status (kidneys, thyroid, Hba1c), medication check (to ensure that they are safe for pregnancy), referral for retinal screening and advice on diet/nutrition.

5mgs Folic acid daily absolutely should be taken for at least 3 months before pregnancy and up until 12 weeks gestation.

This is all detailed in NICE guideline NG3, available online.

There will be differences between care here and USA, but it should be broadly similar to NZ. Bear in mind that some services have been scaled back during Covid. Our local trust has only restarted a pre conception clinic recently and it is all done by phone, apart from bloods obviously.

Hope this helps.
D x
 

Doctorwhobbc

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https://www.nice.org.uk/guidance/ng3/chapter/Recommendations#preconception-planning-and-care

Here's the link to the guidance.

I have T1DM & 2 pregnancies. Happy to answer any questions.

D x

Hi Dje55,

Thank you so much for your thoughtful and detailed reply!

What you've described is what we would be expecting. We're surprised they aren't going to do any bloodwork (not even an Hba1c). Every time we ask the diabetes team or the GP they say there is no need to have an appointment unless there is an issue.

Obviously, there is a lot to consider and be patient with around covid, but I guess we will need to be persistent. For example, when we called today the diabetes nurse said they don't usually get involved pre-conception and any diabetes discussions should be made with the midwife and obstetrician after we've conceived. We pushed them on this and they reluctantly said they would talk to the diabetes consultant and get back to us.

We'll wait to hear back from the diabetes team and hopefully get a bit further next time.
 

dje55

Active Member
Messages
26
Type of diabetes
Type 1
This is absolutely not what should be happening! The whole point of pre conception care is to ensure that your wife is in the best physical health possible before conception, in order to minimise complications for her and the baby.

Remind them of the details of NG3, and ask if there is a diabetes specialist midwife that you can speak to.

D x
 

SJT1D

Member
Messages
6
No, no, no, no, no. @Doctorwhobbc I'm so sorry that you and your wife are going through this, and I'm SO angry at the advice you have been given.

My experience as a T1 who is currently trying to conceive (and as with everything, diabetes related - this is personal).

I spoke to my hospital team about my intentions, months before we started trying. I was then referred to the pre-conception clinic at the hospital. Fortunately, the DSN who runs this clinic is also my DAFNE nurse, so she already knew me well :) A couple of appointments at this clinic did get cancelled, due to COVID, but of course, that's just the current situation.

We worked on improving my Hb1Ac from 6.8% down to below 6.4%. As I'm on blood pressure tablets, the team requested my GP change those to a pregnancy- friendly beta-blocker. I was also prescribed 5mg of folic acid (you are meant to take for at least 3 months before conception)- both of these changes were made in September 2020.

In December my Hb1Ac was 6.3% - everyone was happy, and my consultant told me I could come of contraception when ready.

In January, I did so, and that's when all my troubles started. I have been T1 since childhood, and have been on the pill since I was 17. This helped my diabetes management, as I didn't have to worry about hormonal changes, and how the menstrual cycle affects my BG for many years.

The extra hormones now working through my body (albeit normal ones) have caused havoc with my management. My Hb1Ac has dropped to 5.2% (in just five months), and I have had severe hypos (resulting in my husband having to inject glucagon, and call paramedics out on 3 separate occasions. He also freaks out, and is often awake in the middle of the night, scanning my Libre Sensor, as he is genuinely worried that I won't wake up one morning). It's not just the lows, it's the stubborn highs too - I now know that my blood goes sky high, for about 24 hours, when I ovulate - I now check for ovulation with home urine tests, so I can prepare, and have extra basal at this time.

My team have been amazing, and supportive throughout all this. I am now having regular appointments at the pre-conception clinic at least every 6-8 weeks.

Honestly, the last few months have been so stressful, and I wouldn't have been able to cope with both my husband (it has been a big strain on him, and not just me), and my team, who are supporting us both.

Read the NICE guidance posted above, and please make sure you push for the right support. I really hope your wife's transition is a smoother one than mine, but that support does need to be in place. As diabetics, our pregnancies would be deemed high risk, and so it's always best to get things in place before you start trying.

You are definitely not expecting too much.
 

searley

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I went to a Diabetic assessment with my Ex.. we were considering a child.. and the nurse said at the very least she should consider taking Folic acid.

There was quite a lot more they were talking about at which point my eyes started to glaze over.. so i can't remember.. (typical man)

So i would expect to get some support from your diabetes team..

Good luck and hope it all goes well for you
 
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NicoleC1971

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Plenty of great info here with which I agree based on my experienced of 3 successful type 1 pregnancies.
In addition please consider requesting the Freestyle Libre if she hasn't already got one a pregnancy can be a reason to request one on the NHS to make bg monitoring much better.
The other thing I'd like to add amidst all this medical talk is to try and enjoy the pregnancy when it happens. A medicalised pregnancy whilst rightly involving a lot of scans, checks and care can be daunting but this will be your first child and that first pregnancy is a lovely time to be enjoyed and marvelled at. Good luck!
 

Doctorwhobbc

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Hi everyone, thanks for all of the replies and messages I have received!

An update since I posted this in May.

Despite multiple attempts we have still been unable to access any diabetes care (preconception or otherwise). We've phoned the team at Ninewells hospital multiple times and they've said they aren't able to offer any appointments unless it is an absolute emergency (which preconception isn't). When phoning the GP, they say they can't run any blood work or tests unless the diabetes team orders them, so we've been in a loop for nearly 5 months.

Since it has been nearly 2 years since my wife has had her hba1c taken we've had to order bloodwork privately and speak with her endocrinologist back in the states. Thankfully, everything came back normal (a1c was 4.6% which we're thrilled with — that's better than my non-diabetic a1c).

We're still trying to conceive and are really hopeful that once we actually do there will be some more care. I don't know what the situation is around the rest of the UK but it has been very stressful not being able to contact the diabetes team here in Scotland. We're thinking of transferring to another NHS board if we're allowed and/or writing to our MSP. From what we hear, appointments should be resuming (at least they should have in recent months before the current covid wave) but there still isn't anything available when we call.

If we get any news or find any info that could help others I'll update this thread.