Pre-Conception Advice

[ClaireH88]

Hi All
I have been T2 for just over 2 years and I have polycystic ovarian syndrome, however we have decided we would like to try for a baby. I have been online and done my research, and I know that I need to try and achieve good diabetic control before we start trying. My last hba1c was 64 in June this year. I asked to be referred to the pre-conception clinic, as I know the medication I am on cannot be taken during pregnancy and metformin doesn't ageee with me. My GP advised I would probably end up on insulin whilst trying to get pregnant and throughout my pregnancy.
I am now really confused, as the consultant at the pre-conception clinic has advised me to stop taking my medication Canagliflozin completely, and to "see how it goes" with my control over the next couple of months with absolutely no meds at all. He said he didn't want to put me on insulin yet as it would probably make me gain weight, and as I am overweight this wouldn't help my diabetes or fertility.
Did anyone get any similar advice pre-conception? I am on the depo contraceptive injection which is due in September. I am worried my hba1c and my diabetic control are going to spiral without medication and it's going to take me even longer before I am at a level where I can try for a baby.

Please help, I'm so confused and worried

 

[Resurgam]

The standard response here will be:
Do you have a blood glucose meter so you can test yourself?
are you eating a low carb diet to lower your blood glucose levels and help with the PCOS?
and from what I have seen on other forums - would it be a shock to be pregnant by Christmas?
I joined a low carb diet forum and there were several people who were shocked to become pregnant only a few months after starting the way of eating.

 

[azure]

Hi All
I have been T2 for just over 2 years and I have polycystic ovarian syndrome, however we have decided we would like to try for a baby. I have been online and done my research, and I know that I need to try and achieve good diabetic control before we start trying. My last hba1c was 64 in June this year. I asked to be referred to the pre-conception clinic, as I know the medication I am on cannot be taken during pregnancy and metformin doesn't ageee with me. My GP advised I would probably end up on insulin whilst trying to get pregnant and throughout my pregnancy.
I am now really confused, as the consultant at the pre-conception clinic has advised me to stop taking my medication Canagliflozin completely, and to "see how it goes" with my control over the next couple of months with absolutely no meds at all. He said he didn't want to put me on insulin yet as it would probably make me gain weight, and as I am overweight this wouldn't help my diabetes or fertility.
Did anyone get any similar advice pre-conception? I am on the depo contraceptive injection which is due in September. I am worried my hba1c and my diabetic control are going to spiral without medication and it's going to take me even longer before I am at a level where I can try for a baby.

Please help, I'm so confused and worried

Hi @ClaireH88

Most of the pregnant ladies here are Type 1 but there are some Type 2 ladies who've had pregnancies with diabetes. I'll try to remember some names and tag them for you.

Did the consultant give a reason for stopping the canagliflozin eg is it in case you conceive now and it might have effects on the foetus, is it because she/he wants to,establish a 'starting point' without meds?

Have you tried slow release Metformin? Metformin can be useful for PCOS.

Did the pre-conception clinic give you a timescale for,reducing your HbA1C?

Have you been prescribed the prescription-only high dose folic acid?

Edited to,tag @Jazmine287 as she has Type 2 and is pregnant.

 

[ClaireH88]

The standard response here will be:
Do you have a blood glucose meter so you can test yourself?
are you eating a low carb diet to lower your blood glucose levels and help with the PCOS?
and from what I have seen on other forums - would it be a shock to be pregnant by Christmas?
I joined a low carb diet forum and there were several people who were shocked to become pregnant only a few months after starting the way of eating.

I do have a meter, I only use it first thing in the morning and before meals (all I was ever told to do) so I will have to increase my monitoring.
I am currently on slimming world but I do change it slightly so I don't eat as many carbs as they recommend! I will have to do more research into LCHF diet, Slimming world has been working for me with the weight loss but I doubt I can adapt it to be very low carb?
I would be a bit shocked if I was pregnant by Christmas, only because I've been told the depo injection can take up to 18 months to leave my system and I will struggle to conceive due to my pcos, but it would be a nice shock!
I have bought the carbs and cals book today to help me, I've been told it is really useful?

 

[ClaireH88]

Hi @ClaireH88

Most of the pregnant ladies here are Type 1 but there are some Type 2 ladies who've had pregnancies with diabetes. I'll try to remember some names and tag them for you.

Did the consultant give a reason for stopping the canagliflozin eg is it in case you conceive now and it might have effects on the foetus, is it because she/he wants to,establish a 'starting point' without meds?

Have you tried slow release Metformin? Metformin can be useful for PCOS.

Did the pre-conception clinic give you a timescale for,reducing your HbA1C?

Have you been prescribed the prescription-only high dose folic acid?

Edited to,tag @Jazmine287 as she has Type 2 and is pregnant.

Thanks for your reply. The consultant said he needs to treat me as a pregnant patient as I am hoping to come off my depo in September, and you cannot take Canagliflozin whilst pregnant. I have tried MR metformin but I have IBS, I tried it for over 3 months and it just didnt settle. They didn't give me any timescale at all for getting my hba1c down. They did a blood test today and I think they plan on doing another one in 3 months to see how my levels have been affected by no medication. They said to see my GP about the folic acid and I again, assume that would be from September when my depo runs out and if my hba1c is ok. It's confusing because I would have thought I needed to get the hba1c under control before coming off the depo, but he seemed happy with my control at 64! All my research suggests it should be between 48-57 ideally, but maybe I'm wrong.

 

[azure]

That makes sense and is as I suspected regarding the canagliflozin. Better to be safe

It looks like they're planning to see how your blood sugar is on no meds, perhaps hoping to delay the introduction of insulin. If it was me, I'd ask a few questions about this, including whether you should use an alternative method of contraception while the 'no meds trial' is going on eg a barrier method. I would if it was me.

You're right about the recommended HbA1C. Consultants usually say under 58, but it can vary slightly. You're not too far off that target, but again if it was me I'd be asking for an answer about whether it was ok to get pregnant with that HbA1C. The main concern I'd have is if stopping the canagliflozin caused a rise in your HbA1C.

Regarding the high dose folic acid, I'd get that asap. You can take it for months before conception and some ladies here took it for more than a year.

 

[DCUKMod]

I do have a meter, I only use it first thing in the morning and before meals (all I was ever told to do) so I will have to increase my monitoring.
I am currently on slimming world but I do change it slightly so I don't eat as many carbs as they recommend! I will have to do more research into LCHF diet, Slimming world has been working for me with the weight loss but I doubt I can adapt it to be very low carb?
I would be a bit shocked if I was pregnant by Christmas, only because I've been told the depo injection can take up to 18 months to leave my system and I will struggle to conceive due to my pcos, but it would be a nice shock!
I have bought the carbs and cals book today to help me, I've been told it is really useful?

Claire, if you are interested in reducing your carbs, you might find the site's Low Carb Programme to be of interest. It's a ten week, structured plan that has been very successful for a great number of people; many of whom have reduced or come off their meds. You can find it here: https://www.diabetes.co.uk/lowcarb

There are several presentations talking about the feedback from the programme on YouTube, including this presentation:

Good luck with it all.

 

[azure]

@DCUKMod Does that have a special pregnancy section?

@ClaireH88 Your pre-conception clinic should be able to make you an appointment with a dietician from whom you can receive individual advice specific to you and your individual circumstances. I would advise you to take up that offer - or push for an appointment from them if you haven't been offered one yet.

 

[DCUKMod]

@DCUKMod Does that have a special pregnancy section?

@ClaireH88 Your pre-conception clinic should be able to make you an appointment with a dietician from whom you can receive individual advice specific to you and your individual circumstances. I would advise you to take up that offer - or push for an appointment from them if you haven't been offered one yet.

I don't believe it does, however, my understanding of the programme is that it doesn't suggest that the reduction is drastic, or to "ninja" levels, the suggestion was that Claire consider it as a resource. Bearing in mind Claire is using Slimming World, she may choose to reject the research anyway.

If Claire is looking to reduce her HbA1c, pending pregnancy, and is already talking about reducing carbs, it seemed a useful resource to me.

 

[ClaireH88]

That makes sense and is as I suspected regarding the canagliflozin. Better to be safe

It looks like they're planning to see how your blood sugar is on no meds, perhaps hoping to delay the introduction of insulin. If it was me, I'd ask a few questions about this, including whether you should use an alternative method of contraception while the 'no meds trial' is going on eg a barrier method. I would if it was me.

You're right about the recommended HbA1C. Consultants usually say under 58, but it can vary slightly. You're not too far off that target, but again if it was me I'd be asking for an answer about whether it was ok to get pregnant with that HbA1C. The main concern I'd have is if stopping the canagliflozin caused a rise in your HbA1C.

Regarding the high dose folic acid, I'd get that asap. You can take it for months before conception and some ladies here took it for more than a year.

Apologies for not coming back to you sooner, for some reason my app on my phone won't let me reply! I have just been to see the nurse at my GP and my HbA1C is 58! They have given me a repeat prescription for the high dose of folic acid and they are happy for us to start trying once my depo injection "wears off" for want of a better word. I have been testing my sugars more now I am not on any medication and I have been keeping a food diary on my MyFitnessPal app. I worked out how much carbs I can have based on low carb and 1400calories a day to try lose weight, so I have been trying to stick to that. I will see how that affects my bg readings and adjust accordingly. A bit trial and error at the moment but I'll soon learn what affects me more than others. I'm just so happy that my HbA1C is 58! It was 105 18 months ago!

 

[azure]

58 is great @ClaireH88 ! Well done!

It sounds like you've got a really sensible approach All this preparation will stand you in good stead for when you conceive.

Keep,us updated - and good luck

 

[ClaireH88]

58 is great @ClaireH88 ! Well done!

It sounds like you've got a really sensible approach All this preparation will stand you in good stead for when you conceive.

Keep,us updated - and good luck

Well, I have been off my medication for about a month now. I have been carb counting, using my carbs and cals app and my BG levels are all over the place! One day I will be fine with a certain meal, the next time I have it my BG level goes through the roof. My average before I came off my Canagliflozin was between 6-8, it is now 10-16. I can't get it to come down no matter what I do. My next appointment with the consultant isn't until December. I am really suffering with all the side effects of my high blood sugar levels.
I have just been to see my GP to voice my concerns that my hba1c will just spiral out of control, and he said there wasn't anything I could do. He's contacting the consultant for further advice for me, but they don't want me to go on insulin as it'll make me gain weight. They kept pushing metformin which irritates my stomach and doesn't lower my BG levels. I am genuinely at a loss as to what to do. It is just a struggle simply to get up in the morning, I feel so drained and lethargic

 

[azure]

I really sympathise @ClaireH88 High levels are horrible and make you feel rubbish physically and emotionally.

I don't know about Type 2 drug options as I'm Type 1, but if you're going to need to go onto insulin anyway, then I wonder at what point they'll let you use it. It does seem frustrating.

Could you ask for a second opinion about the insulin? Could you GP push for an earlier appointment?

 

[ClaireH88]

I really sympathise @ClaireH88 High levels are horrible and make you feel rubbish physically and emotionally.

I don't know about Type 2 drug options as I'm Type 1, but if you're going to need to go onto insulin anyway, then I wonder at what point they'll let you use it. It does seem frustrating.

Could you ask for a second opinion about the insulin? Could you GP push for an earlier appointment?

They have requested an earlier appointment so I have to wait a few days for the consultants response. I've seen 2 different GPs and a consultant, and they've all offered me different opinions. 1 GP said I will have to go on insulin. The consultant wanted me to go without medication completely. The 2nd GP wants me to go on Metformin and steer clear of Insulin. He said that if I have control with Canagliflozin, "in theory" I should be able to control by diet alone.

It is so confusing. I have diabetes because of my PCOS. Everything I read says PCOS causes insulin resistance, so that's what causes diabetes. Will going on insulin even help? I don't know enough about it all. I have gained weight coming off my Canagliflozin so either way I will gain weight.

I didn't think it would be this difficult. I haven't even come off my contraception yet, I thought the difficult part would be getting pregnant. I haven't even got over the first hurdle yet, and consultants in the past have told me I will struggle to conceive, so I am potentially doing this for nothing

 

[azure]

@ClaireH88 Have you also tried asking on a PCOS forum? I think Metformin is commonly prescribed, but there might be ladies who can't tolerate it who have been in a similar situation to yourself.

Pregnancy itself causes insulin resistance, so I can imagine you might need insulin then anyway, especially in the later stages. So it's all a balance. Even if it does cause weight gain, could you not get help with that from a dietician so thtat any weight gain was kept to a minimum?

 

[ClaireH88]

@ClaireH88 Have you also tried asking on a PCOS forum? I think Metformin is commonly prescribed, but there might be ladies who can't tolerate it who have been in a similar situation to yourself.

Pregnancy itself causes insulin resistance, so I can imagine you might need insulin then anyway, especially in the later stages. So it's all a balance. Even if it does cause weight gain, could you not get help with that from a dietician so thtat any weight gain was kept to a minimum?

I will have a look for some PCOS forums. It's a vicious circle, I have no energy so I don't want to go out for a walk/run to exercise. So my blood sugar levels are not going to get any better. If they can help with my energy levels, I could exercise and follow the low carb diet/portion control etc. I don't let any food cravings get the better of me. I feel if they solved one issue then the rest will follow, but I'm not a doctor so what do I know?!

 

[azure]

There's a well-known forum called Soul Cysters @ClaireH88

So are you saying you would prefer to be on insulin to get your levels down? If so, then don't think your opinion doesn't count. You're the person who has the PCOS and diabetes and you should be involved in the decisions.

 

[ClaireH88]

There's a well-known forum called Soul Cysters @ClaireH88

So are you saying you would prefer to be on insulin to get your levels down? If so, then don't think your opinion doesn't count. You're the person who has the PCOS and diabetes and you should be involved in the decisions.

In an ideal world I would stay on my Canagliflozin as it works for me, but they said I can't if I am trying for a baby and once I'm pregnant as there isn't enough info to say it's ok to be on it whilst pregnant. They said I can either be on metformin or insulin when I am trying to conceive/once we are pregnant. Metformin upset my stomach so bad it was unbearable, so unless they can give me a viable third option (not "just see how you go without meds") then I'm not sure what else I can really do
They just keep repeating that I will gain weight if I go on insulin and keep trying to put me off it.

 

[azure]

Perhaps you could try it short-term to get your BS down and your energy back, and see how it affects your weight?

 

[Pixelle]

I'm type 2. I had GD 7 years ago with my son and was diet controlled at first, then Metformin which didn't agree with me at all and then insulin, fast acting and slow release.

I was officially diagnosed type 2 in 2014, diet controlled, we were trying for years to have a baby but it wasn't happening.

January this year I did LCHF until April. My hba1c was 86 when I started. 3 months later it was 44 and I conceived at the end of those three months. I was pretty strict with the lchf (less than 30g carbs per day) but I wasn't planning on being that strict long term.

Once pregnancy was confirmed, I was put on insulin straight away as I refused Metformin, knowing the effects it gave me.

I won't lie, it's been really difficult controlling the bg even with insulin (and sometimes insulin makes it a guessing game as pregnancy progresses) but I fully believe that the short stint on LCHF helped me conceive.

I'm no longer doing lchf as it was too restricting long term, for me. I still count my carbs and have much more knowledge of nutrition and what I'm eating.

I would say slimming world, even with adaptations probably won't be enough to reduce your carb intake. You need to up your protein and fat if you're going lower carb, slimming world is all about low fat and processed, artificial foods and sweeteners, which will not help if you're lowering your carb intake.

I hope this makes sense and might help