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Advice on pregnancy with t1 pls

O

obates

Active Member
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Hi guys. I hope this would be the right section.
Im looking for some advice.
Im 30 years old and have had t1 for 22 yrs. I also have mild HTN, have had laser for retinopathy about 8 yrs ago. I take lisinopril and have injections, my hba1c was 48 in nov. Have been thinking about pregnancy so I went to my gp. First visit was with so called diabetes specialist nurse. She advised to book appt with my diabetes clinic which i did and it got cancelled twice. Went back to gp and dr advised just to get on with it and come back when i am actually pregnant! On top if that told to carry on taking Lisinopril and get folic acid from chemist!
Now, i really dont know where else to go and dont want to just sit and wait. Has anyone else got similar experience and what did u do? Or any advice on what i should/could do? Right now all i can think about is writing a complaint to surgery.
I live in East Hertfordshire btw.
Thanks
 
My wife is currently pregnant and T1. We got a referral from the diabetic clinic to a diabetes team that manages pregnancy when we were planning on a child. From there my wife got a prescription for a daily folic acid which she took for about a year before she got pregnant. We got the ok to try for a baby when we might wifes HAB1 neared 7%. Think its really important to get your blood levels right before starting a family if possible so I would persevere with the diabetes clinic. Your GP doesn't sound very helpful.
 
Hi,

Thanks for the toolkit.
Its good to read up all the stuff, however, I feel that I need more personal and one to one assessment. Diabetes clinic is just as useless as GP as they do not have any appointments untill June and they cannot book them anyway as there is no rota for consultants who cover the clinic.
Is there a private service I could pay for consultation? Obviously in Herts or London area, maybe someone has had experience with this?
 
Hello,

Go and kick up a stink with your diabetes unit. I said I wanted to have a child, and they gave me an appointment with a diabetes nurse specialist who also specialises in pregnancy. They give some scary targets to meet for blood sugars, and a bit of a talking to about the risks but it was really helpful. My husband came a long too and found it useful. You need to take the prescription 5mg of folic acid as a diabetic so I really would make a fuss about not being seen! If you have a particular consultant I would try ringing up their secretary (through the hospital switchboard) and explaining that the apptointment has been cancelled twice and you really need to see them as a matter of urgency. Or just phone the diabetes nurses and keep leaving messages until they ring you back. They are more flexible about appointments than the consultants.

It took us a year but with good blood sugars we are now pregnant so do be aware that it can take time, even if you're not diabetic.

em.x
 
Thanks for advice, at least I have a rough idea what should be happening. I am going to try to change the surgery and see if I can get better advice, diabetes nurse at current surgery is useless.
 
HI,

Yes, as T1 you need to have the higher dose of Folic Acid. With my second pregnancy my GP wouldn't give it saying that its not written any where that a T1 needed the higher dose and I had to kick up a fuss. Eventually they wrote the prescription for me.

It is actually stated in the BNF (British National Formulary) and you can tell your GP to refer to that if they doubt you, I did.

Now that you are pregnant, you should be referred to the Ante Natal Team which should have a specialist Diabetes Nurse/Midwife and consultant to advise you. You should get this appointment fairly quick as you are a T1. Make sure the GP does the referral.
 
Hi I am 7 weeks pregnant and my diabetic team have been supporting me for the past year to help plan and tight control. Definitely take 5mg folic acid from GP and make sure you get an appointment at the prepreggers clinic. It has helped so much. Now I am pregnant I am going very 2 weeks to the ante natal clinic but am getting very well looked after! Got 8 week scan on Monday! Good luck with everything
 
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