Pregnant: Scared! Type1 stressed.

[Maddileigh]

Hi all.

I'm new here. T1 diabetic for 15 years, now 26 years old. It's never been brilliantly controlled but never had any complications.

I recently found out I am pregnant, 6w+4. It was completely unplanned and out of the blue. I'm super worried because my last HBA1c in June was 73 (8.6%) I think which is obviously way too high to be pregnant. All I've managed to do so far is look online and scare myself.

Since finding out I've been trying my hardest for super tight control, albeit having random lows and spikes out of nowhere! I'm even having to test and give myself extra insulin around 3am to stop morning highs. This means testing 10+ times per day!

My doctors are being ridiculously unhelpful and saying that I can't have more testing strips because I have used my "quota". I have been told that I need to see a doctor to be shown "how to test my blood properly, only 4-5 times a day". I nearly cried I was that mad!

I am already so stressed I have damaged my baby! Has anyone else had issues with prescriptions while pregnant?

Sorry for the long post.

Thanks

 

[Freema]

Hi all.

I'm new here. T1 diabetic for 15 years, now 26 years old. It's never been brilliantly controlled but never had any complications.

I recently found out I am pregnant, 6w+4. It was completely unplanned and out of the blue. I'm super worried because my last HBA1c in June was 73 (8.6%) I think which is obviously way too high to be pregnant. All I've managed to do so far is look online and scare myself.

Since finding out I've been trying my hardest for super tight control, albeit having random lows and spikes out of nowhere! I'm even having to test and give myself extra insulin around 3am to stop morning highs. This means testing 10+ times per day!

My doctors are being ridiculously unhelpful and saying that I can't have more testing strips because I have used my "quota". I have been told that I need to see a doctor to be shown "how to test my blood properly, only 4-5 times a day". I nearly cried I was that mad!

I am already so stressed I have damaged my baby! Has anyone else had issues with prescriptions while pregnant?

Sorry for the long post.

Thanks

so sad that you are so scared, 5 times of testing a day should be enough, for most, why don´t you just buy some more strips yourself and have them in reserve ...

my pregnancy was horrible... I didn´t eat for almost 6 month and lived from saltwater and glucose right into my veins... I wasn´t diabetic at that time...but i understand your worry of how your baby is doing... but relax... I didn´t even get my levothyroxine medication as I would wommit that up too when I tried to eat it, and the chief-doctor at the hospital thought it would be too expencive to order it home from Sweden in an injection-formula....instead he just shouted me in my face as if I just wouldn´t eat and keep medicine in me on purpose... so no vitamins no real food and nothing else than my body and glucose to live from ... and still my daugther came out totally normal and of normal birth weight too.. and still is at least in my eyes perfect....
you used to be in balance and eat well, that´s the most important , that you had the right nutrients in your body of the time when getting pregnant... So don´t worry too much, I think it is much worse when people are drinking a lot of alcohol when preganant......

try not to panic yourself, a lot of diabetics come somewhat out of whack when getting pregnant...maybe you´ll be more balanced after just a week from now or in a short period..

beside that I hate when male doctors behave as if all women are just hystrical idiots.. so have my sympathy and keep your head up high.. but just buy the strips so you yourself can measure when you want to.. but don´t tell them

 

[catapillar]

Ask to be referred to the diabetes clinic - you should be seen for early pregnancy advice from your DSN. You should be on high dose folic acid. They should give you advice on target ranges for blood sugar during pregnancy.

Well done striving for tight control. Make sure you have hypo treatment handy: early pregnancy hormones do make you vulnerable to hypos.

I'm not sure what your doctors are talking about with mention of a quota of test strips - nice guidelines provide type 1 diabetics should be supported to test 4-10 times a day, or more. I'm sure your diabetic specialist nurse would support you with more during pregnancy. In fact, one of the things that helps with obtaining NHS funding for continuous glucose monitoring is being pregnant - because then testing is for the health of two people: mum and bump.

You shouldn't have to buy yourself test strips because you are type 1 and should get access to the strips you need on prescription. Certainly the NHS guidelines do provide that you shouldn't have to be funding your own strips.

Congratulations, try not to stress to much.

 

[Maddileigh]

Thank you for your support Freema. Sometimes you just need a vent and bit of reassurance! Money is tight with the whole unplanned pregnancy thing I've got going on but seriously considering investing in the Libre CGM just for some peace of mind!

 

[Maddileigh]

Ask to be referred to the diabetes clinic - you should be seen for early pregnancy advice from your DSN. You should be on high dose folic acid. They should give you advice on target ranges for blood sugar during pregnancy.

Well done striving for tight control. Make sure you have hypo treatment handy: early pregnancy hormones do make you vulnerable to hypos.

I'm not sure what your doctors are talking about with mention of a quota of test strips - nice guidelines provide type 1 diabetics should be supported to test 4-10 times a day, or more. I'm sure your diabetic specialist nurse would support you with more during pregnancy. In fact, one of the things that helps with obtaining NHS funding for continuous glucose monitoring is being pregnant - because then testing is for the health of two people: mum and bump.

You shouldn't have to buy yourself test strips because you are type 1 and should get access to the strips you need on prescription. Certainly the NHS guidelines do provide that you shouldn't have to be funding your own strips.

Congratulations, try not to stress to much.

Thanks too Caterpillar, I was going to ask what my changes of a CGM and pump are whilst pregnant. I think I will end up driving myself mad otherwise!!

 

[daisymj14]

Hello @Maddileigh

I have just got myself a free style libre. It costs money, but it's been worth it for me. I'm not pregnant but trying to reduce my hba1c. It means you can track your blood glucose levels 24 hours a day! Not sure if you can use whilst pregnant?

Your doctor sounds ridiculously unhelpful. Sorry I can't be more helpful as not in your position but
I hope you find the guidance you need.
You and baby are the most important things in the world for you right now xxx

 

[azure]

Hi all.

I'm new here. T1 diabetic for 15 years, now 26 years old. It's never been brilliantly controlled but never had any complications.

I recently found out I am pregnant, 6w+4. It was completely unplanned and out of the blue. I'm super worried because my last HBA1c in June was 73 (8.6%) I think which is obviously way too high to be pregnant. All I've managed to do so far is look online and scare myself.

Since finding out I've been trying my hardest for super tight control, albeit having random lows and spikes out of nowhere! I'm even having to test and give myself extra insulin around 3am to stop morning highs. This means testing 10+ times per day!

My doctors are being ridiculously unhelpful and saying that I can't have more testing strips because I have used my "quota". I have been told that I need to see a doctor to be shown "how to test my blood properly, only 4-5 times a day". I nearly cried I was that mad!

I am already so stressed I have damaged my baby! Has anyone else had issues with prescriptions while pregnant?

Sorry for the long post.

Thanks

Please don't stress @Maddileigh and stay away from Google!

Firstly, have you phoned your DSN and got an appointment for the diabetic pregnancy clinic?

Secondly, ignore your GP! Seriously. Their advice is WRONG for pregnancy.

Thirdly, are you taking the special prescription only folic acid? If not, get a prescription for that as soon as possible.

My advice is to phone your DSN now and get the help and support you need.

You're not the only lady who has had an unexpected pregnancy, so please don't worry. You've tested and spotted you're pregnant in good time and there have been pregnant ladies with worse HbA1Cs than yours.

 

[azure]

Thank you for your support Freema. Sometimes you just need a vent and bit of reassurance! Money is tight with the whole unplanned pregnancy thing I've got going on but seriously considering investing in the Libre CGM just for some peace of mind!

Don't spend any money yet. Some pregnancy clinics will loan out CGMs.

The most important thing is to get into the hospital clinic where you'll get all the support you need

 

[catapillar]

Chances of getting a CGM still fairly slim, but improved by pregnancy.

If your GP is being "awkward" about your test strip script, here are the NICE guidelines - https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#blood-glucose-management-2 - they provide that type 1s should be supported to test 10 times a day or more (NG 17 1.6.11-12) ask your GP why they aren't following the guidelines. Get into see a DSN for pregnancy advice and ask them to write to you GP in support re the prescription issue. Aalso ask them about CGM - you will need support from a consultant endocrinologist for NHS funding for this. You can also contact input diabetes (a charity specialising in accessing diabetic technology via the NHS).

 

[Maddileigh]

I want to thank you all so much for your advice. I will let you all know how I get on with my appointment/prescription issues!

 

[Postitnote]

Just wanted to add my support! my pregnancy was also unexpected and my Hba1c was 8 or 7% (can't remember sorry but it was not good!!).

As soon as I found out I contacted my DSN and got my BS under tight control. I was given all the insulin and test strips I needed, no fuss.

I now have a beautiful and perfect one month old boy.

 

[Maddileigh]

Just managed to get my DSN on the phone. My first appointment was supposed to be 2 Dec but she's gone through my bloods with me and changed up some of my ratios and basal amount to see how I get on. She was extremely nice and has given me her direct number to call if I'm worried. She is also going to write to my GP about my testing strips!

Feeling a little more at ease now, thank you @Postitnote hearing that makes me feel better, i am sure we aren't the only ones either!

 

[Maddileigh]

Hi all thought I would check in and update. Unfortunately I started getting stomach cramps last week and a scan showed no heartbeat and no growth from the 7 week scan. Absolutely devestated. I decided to wait it out naturally but a further scan yesterday showed no signs my body was ready to let go yet, the sac and placenta were still growing but no baby. I decided to have d&c today as I don't think I could handle the waiting which they said could be weeks

I'm home from the hospital now, sore and very emotional but ok. Post op BG little high (10s) but told was ok. I am however concerned about my BG levels now, slowly rising since 6pm, now hit 17mmol and I'm panicking. My normal correction doses don't seem to be working and I have no contact with my DSN out of hours. I have tested for ketones which are 0.2 so I'm happy with that but concerned about the long term effects of this high BG

 

[himtoo]

Hi @Maddileigh
really really sorry to read your latest update news........
to try and help you with the right now -- I would suggest looking at your sick day rules -- as you are running high currently
link here http://www.leicestershirediabetes.org.uk/438.html

I would try not to worry about the long term right now -- just concentrate on getting into single figures as quickly as you are able ........a couple of days at higher levels shouldn't cause long term problems.............

 

[Maddileigh]

Hi @himtoo

Thankyou for your reply. Such a difficult time and I feel like I'm battling the diabetes side alone. My family and partner are amazing but the diabetes is still and unknown to them, as much as it is to me currently!

I know it's probably the stress/emotions pushing it high but still make me panic non the less, thankyou for the link. Much appreciated.

 

[GemmaD]

Hi all thought I would check in and update. Unfortunately I started getting stomach cramps last week and a scan showed no heartbeat and no growth from the 7 week scan. Absolutely devestated. I decided to wait it out naturally but a further scan yesterday showed no signs my body was ready to let go yet, the sac and placenta were still growing but no baby. I decided to have d&c today as I don't think I could handle the waiting which they said could be weeks

I'm home from the hospital now, sore and very emotional but ok. Post op BG little high (10s) but told was ok. I am however concerned about my BG levels now, slowly rising since 6pm, now hit 17mmol and I'm panicking. My normal correction doses don't seem to be working and I have no contact with my DSN out of hours. I have tested for ketones which are 0.2 so I'm happy with that but concerned about the long term effects of this high BG

Hi Maddileigh,

I am so sorry for your loss. I am in the same position as you. I conceived when my hba1c was 8%. I worked really hard to control my sugar levels and after 4 weeks my hba1c was down to 7.0%. However, at 9 weeks I went for a scan because I no longer felt bloated (this was my only pregnancy symptom) and unfortunately the scan revealed there was no longer a heartbeat .

I waited two weeks for my body to naturally release the foetus but it didn't so I had a d&c on Wednesday. For 24 hours after my sugar levels were high and 3 days later they're still higher than I would like. I seem to have picked up a cold now too after the op which doesn't help things.

I'm just trying to stay positive though. I'm continuing to test my blood sugar up to 10 times per day and I'm continuing with my 5mg daily folic acid. Hopefully my period will come during the next 3-4 weeks so my husband and I can try to conceive again. Christmas will be hard to try and keep sugar levels down but we have such a strong incentive now.

All the best with your recovery. Everybody keeps telling me that it just wasn't meant to be but hopefully this time next year will be a very different time for us both .

Gemma x

 

[Maddileigh]

Gemma, I'm incredibly sorry for your loss too. It's the worst feeling in the world isn't it

Out of interest how high were your levels post op?

I'm on correction dose number 4, up to 15 units now since last night and still can't get below 17mmol and starting to feel very unwell ketones negative so far but am starting to panick

X

 

[GemmaD]

Gemma, I'm incredibly sorry for your loss too. It's the worst feeling in the world isn't it

Out of interest how high were your levels post op?

I'm on correction dose number 4, up to 15 units now since last night and still can't get below 17mmol and starting to feel very unwell ketones negative so far but am starting to panick

X

Immediately after my op my sugar levels were low and my surgeon said she had to give me glucose during my op because my sugar levels dropped to 3.2.

However, later that evening my sugar levels were 16. I gave a correction dose immediately and two hours later it had only fallen to 13.6. I gave another correction dose and one hour later it had risen back up to 16. I didn't get any sleep that night because I was constantly checking. Last night, before bed, my sugar levels were 6.5 but when I woke up this morning they were 13. It's frustrating because I know it's going to affect my hba1c. I'm just hoping once this cold starts to clear up, my sugar levels will become more manageable again.

X x

 

[Maddileigh]

Ah that makes me feel a little better. I'm so worried about infection etc! They've finally come down to 13.5 but not sure whether they'll carry on. I hope so!

The situation is so hard without having to contend with diabetes too! We've got to be the strongest of the strong.

Hope you're doing ok, we will both be ok in time and I wouldn't worry too much about your HBA1c, it's understandable and I'm sure it will come back down again quickly.

Xx