Returning to the forum after running away....twice!

[SugarPlumFairy]

Hi everybody

This is my third attempt at using the forum as I go through many phases with my diabetes and often find it easier to be in denial, I appreciate very much any advice given and I use the forum to read other posts all of the time but I tend to not log on after I have explained my story as part of not having to deal with it.
I am going to try again now and see if anybody can offer any help please.
I have type 1 diabetes and at the moment I am in a positive phase and I am trying so hard. I have had diabetes for 14 years (when I was 18) and have never gained control. I have been on lots of different insulins and most recently I have completed the DAFNE course and I am now on an insulin pump using Novorapid.
I am in pre-conception clinic at the hospital as I am desperate for a baby (feel like I have been saying this for about 20 years!)
My last HBA1c was 8.6%, it was the same for the previous 3 months too!
I have always eaten anything I wanted really and tried to cover it by insulin. Following DAFNE I started carb counting and was taught that I could eat anything I wanted as long as I matched my insulin (have my set ratios). I recently saw a different nurse at the hospital and she said that I should try and lower my carb portions to less than 50 grams per meal. I was eating quite a lot. For the past 3 weeks I have tried to stick to this and noticed a big improvement in my control (my glucose metre is showing an average of 6.8, this was 10 a few weeks ago). I have taken this even further and tried to have some no carb meals and lower portions at other meal times (I have been having approx 50-80 grams of carbs per day.)
I have done lots of research and experimenting and it's now so obvious to me that without carbs I would have perfect levels! What I need now is a bit of help/advice about how to manage this. My main concerns are:
What happens when I am pregnant because I am sure that I will need to eat some carbs then?
Are there any people with type 1 diabetes that can eat any amount of carbs but still control their sugar levels with a perfect match of insulin?
A bit random but when I try to have no carb meals, like a cooked breakfast, I take insulin for the sausages but as a whole meal it really knocked my sugars up yesterday, any ideas why?
The big thing is how to manage post meal spikes, this is my biggest downfall. I have tried to take steps such as lowering the carb portions and trying to move around a lot after eating to get some exercise but I am still struggling. I need to get my readings an hour after eating to below 7.8. I can only do this by not eating carbs. Does anybody have any thoughts on this or stories of what you do please?
I think its probably working out which foods cause higher spikes maybe but feel like I haven't got time to do that because I really do not want to wait any longer to get pregnant. I also do not think it's possible to analyse my food any further without going round the bend! I have even given up my job so that I can get this sorted, it's more work than a full time job!
I am at the hospital next week for my next HBA1c and I am hoping so much that it's come down, I don't expect it to be perfect but I will be happy if it is below 8, I then plan to work just as hard for the next 2 months and hopefully by the end of these 3 months I will be in the right place. I really feel like I can't wait any longer. If my HBA1c remains the same, I really will not know what to do next!
Diabetes has taken over my life now but I know it will be worth it when I have a baby, it's just at the minute I feel like I am working so hard for nothing because it feels like this is never going to happen.
If anybody can offer any advice I would greatly appreciate it. I have no problem sharing my test results if that will help you to help me too.
Thank you for taking the time to read this.
x

 

[noblehead]

Crikey so many questions :shock:

Seriously the nurse at the hospital has offered you some good advice on the 50g max per meal, I can manage more with my evening meal but do tend to stick to eating 150g a day over 3 meals.

The no-carb meals are fine if you can get away with it, I find I still need to cover protein based meals with insulin and have to split the dose otherwise I find my bg increases 3-4 hours after eating, protein in the absence of carbs converts to glucose by around 60% so you do need to keep this in mind.

As for low-carbing and being pregnant you would need to speak with your consultant as no-one on here is medically qualfied to answer this for you.

Hopefully some more experienced type 1 low-carbers will be along soon to offer you advice on diet etc

 

[SugarPlumFairy]

Thanks for your reply.

I didn't know that about protein! I am starting to feel like I need a diet of Lettuce

Do you test an hour after eating? If so could I ask what your readings tend to be please? I have been getting the odd few below 8 but also some 11's.

 

[KatieCat]

hi Sugar Plum Fairy, when I was pregnant with gestational diabetes last year ( I am pre diabetic type 2 now) I was advised 40 to 50 grams of carbs per meal (think it was 40 grams per meal and 10 gram snacks in between meals) as being a healthy level to have for both mother and baby. I had tried to control it by diet alone for the first few weeks but was practically having no carbs to keep my levels below target so was advised to have insulin and increase my carbs to the 40 to 50 grams recommended (this was because my urine had started to show ketones indicating that my body was struggling to give nourish me and my baby due to lack of carbs). I understand that a really low carb diet(such as atkins diet) can cause ketones in urine and probably ok for someone trying to lose weight (I don't know, I'm not an expert) but when pregnant it's important to have a modest amount of carbs to provide mother and baby with the necessary energy/nourishment (that's what I was advised anyway). I now have a lovely 6 month old boy . Hope this helps in some way.

 

[Tracey69]

HI sugarplumfairy,
I am a type i diabetic and have had two children, my son is 21yrs old and my daughter 18yrs old.
Unfortunately i was never controlled when i waas pregnant or even before the pregnancies.
But you do have a lot of questions, which only we can offer advice, you need to talk to your consultant regarding pregnancy.
You have been offered alot of advice by your nurse and i'm sure you are doing all you can to get bg level down.
All i can see say is stick with what your doing, keep monitoring your levels.
You will need more carbs once you become pregnant as you need the energy for your baby.
Unfortunately i was ill through my pregnancies and my son was born 4 weeks early and my daughther was born 7.5 weeks early and needed intensive special baby care, but they are both healthy.
Keep up the good work and hope your hospital visit goes well.
Keep in touch if you like as i would like to hear your dreams are just around the corner.
Just one more thing the more you worry the sugars can rise. Keep calm and relax.
Take care
Tracey

 

[SugarPlumFairy]

Thanks for your replies Katiecat and Tracey.

I love to hear stories of ladies with diabetes who have children because sometimes it really does feel like it will never happen.

I think the low carbing has affected me, I am passing urine very very frequently (every 5 minutes!), I have emailed my nurse this afternoon to mention it.

I guess if when I am pregnant I am going to have to try and eat approx 50g carbs it may be worth trying to get into that habit now rather than having a lower amount. It's just that I cannot eat that many carbs and have my sugars below 7.8 an hour later. I will mention it at pre-conception clinic next week.

I am a terrible worrier ha ha, I think it's because I am exhausted with trying so hard that if next week my HBA1c is not down, I will feel like I have run out of ideas/energy to ever get it right. As soon as things go wrong I tend to give up trying.

Another point, one of the nurses at the hospital said that If I could get my HBA1c to 7 then that would be good enough whereas others have pushed for it to be much lower. Due to the amount of time I have waited I would be willing to try and conceive with a HBA1c of 7 (whilst still working to bring it down), but I would always have in the back of my mind that the NICE guidelines are lower, does anybody have any thoughts on that or has anybody had a baby whilst at that HBA1c level? I am not asking for confirmation that it's ok to do that, I know only my consultant can say that but i'm really interested in personal opinions.

Many thanks

 

[Tracey69]

HI
I am a shamed to say my sugar levels were alot higher than yours when i concieved.
I had kidney infections one after the other, spent most nights at the maternity unit being monitored as i never felt them moving, but they moved while on monitor.
I just recommend you keep it under 7 if poss, but your levels are alot better than mine.
In the last 5 years i have only just got some control, treated my diabetes like i was a normal person, how silly as i now have a few complications.
Take care
Tracey

 

[SugarPlumFairy]

I have always been the same. I have always eaten and drank anything I wanted to.
I had a miscarriage a few years back which was an unplanned pregnancy and my HBA1c was 9/10 and although the hospital always say they can not give a reason why, the diabetes nurse who visited me said that it was because of my diabetes, at the time I was young and very in denial about my diabetes and although devastated and still am to this day, I didn't blame myself, now I am older and wiser and have been given lots of diabetes education and a pump, I feel like this time its all in my hands.
I am scared about complications because of the number of years I have had poor control too, I have got background retinopathy which I am guessing is going to get worse now I am getting tight control of my sugars so quickly. Do you mind if I ask what complications you have?
It's really nice to chat to people who know what I am going through.

 

[Tracey69]

HI sugarplumfairy
I have retinopathy, ialso have macular oedema and am awaiting an operation on left eye to remove the vitreous Jelly as i have no room for any more laser in the left eye, and the bleed keeps squirting as is pulling on the retina.
I have no linings to my kidneys, I have had thyroid problems, neuropathy and i suffer with depression. I also have anemia where i have to have B12 injection every three months. I also have Glucoma and am now registered partially sighted and had my licience revoked 2 years ago.
Not that this is any excuse but i never used to worry about myself i always put others first, and i still allow that to happen at times.
I see a counsellor which was recommended to me by my diabetic nurse as she thought i was in denial. I was diagnosed at the age of 6 yrs old and am now a week away from being 43.
Like yourself i have had to work hard to get my HBA1C down, it is now 8.1 where it had been around 9/10.
I lost four stone at the being of last year due to my thyroid meds, I had an underactive thyroid so was levothyroxine and the levels became too high and i became really unwell, now not on any meds, but haven't been a 100% since.
I hope this hasn't put you off, but these are just what i have experienced in my life of being a diabetic.
Take care
Tracey

 

[dozern]

I had tried to control it by diet alone for the first few weeks but was practically having no carbs to keep my levels below target so was advised to have insulin and increase my carbs to the 40 to 50 grams recommended (this was because my urine had started to show ketones indicating that my body was struggling to give nourish me and my baby due to lack of carbs).

 

[bevvy]

Hi sugarplumfairy I am not the best person to give advice as I get readings into the 20s and being 10 and below feels like I am having a hypo my current HBAc1 is 9.9 i am a type 2 been for the past 25yrs I was diagnosed when I was 21 and rebelled against it for at least 13 yrs and still finding it difficult. I am the mother of 3 my daughter will be 25 this year my son will be 23 and my youngest will be 13. There was. O diabetic. Are with my first child I was diagnosed in Jamaica and when I returned to the UK 4 mths later and pregnant the doc stop my tablets he said he couldn't find it in his medical book they were called Diabenese he didnot picked up on my pregnancy and no follow up appointment. I was still feeling unwell so I went to see another GP he didn't pick up my diabetes but he did my pregnancy I went through that preg without any diabetic care my baby was 1 day late natural birth weighed 8lbs 11oz. I Lso developed a condition called bell palsy lucky for me it only affected only the right side of my face I still can't close my right eye on its own. By my second pregnancy a test show tht my blood glucose was so high I. Could have fallen into a coma tha was about 6-7 mths after I gave birth. I fell pregnant shortly after I had a full diabetic care with that preg my son was born 4wks early weighing 5lbs 2 oz my third pregnancy I was advised by one GP to terminate the pregn cy because of me never being in control of this monster I was reassured. Y the specialist doc that women in my position could still have a healthy baby I was taken of the tablets and put on insulin my son was born by cesarean 2wks before my due date weighing 9lbs 11oz and with that pregnancy it was the best control I ever had with my diabetes now I am on everything you can think of tablets 2000mg metformin lantus. Nova rapid Blood pressure tabs the works but the food thing I have a prob with



M

 

[SugarPlumFairy]

Thanks everybody for taking the time to reply and for being so open.
I am really sorry to hear about complications, I am glad you have told me because I actually have never for one second thought about getting my diabetes under control for my own health. I am only doing it for a future baby.
I do know that once I have had a baby I will almost certainly slip back into bad habits but it has certainly opened my eyes.
I am really struggling with post meal spikes again, I emailed my nurse and uploaded my pump data for her to see but she hasn't replied as yet.

Tracey, are your conditions all linked to you having diabetes? I have a number of people in my family who have thyroid problems, I am half expecting it to happen to me too. I am the only one with diabetes. I certainly know what you mean about putting other people first, this is also my problem. Everybody advises me now to tell people that I need time for me now but when you are part of a large family that has more goings on than Eastenders, its not so easy! If this is in your nature its very hard to change, I feel selfish sometimes for having a hypo at an inconvenient time!! So many people do not even know I have diabetes or remember because I have to pretend I am not sometimes to get on with other things. It sounds like you have worked really hard to bring your HBA1c down whilst also having many other complications to deal with. I do hope that you are getting support.

Dozern, when you eat 40/50 grams of carbs, what are your levels like 1-2 hours later please?

bevvy, I used to have the same problem as you. I used to have my sugars running in the 20's and then feel hypo when at about 15-10. I was told that this was because your body gets used to running at such a high level and so your hypo warning level changes. This goes when your body later gets used to running at normal(er) levels. Lovely to hear that you have 3 healthy children!

I think maybe I am being a bit hard on myself trying to do every single thing by the book. It's a week today until my pre-conception appointment/HBA1c check, it cannot come soon enough! My metre is now showing my 2 weekly average blood glucose to be 6.9! Surely this must mean that my HBA1c will be down too PLEEEEEASE!!!

 

[BeccaJaneStClair]

Hi SugarPlumFairy

I've just recently been diagnosed and all I want to do is run away, so I feel your pain. My husband and I wanted to start trying for a baby in the Autumn (we'll be married 3 years by then, I'll be 33 and he'll be 42), but now my GP wants me to get my blood sugar regulated first....*sigh*

 

[SugarPlumFairy]

Hi BeccaJaneStclair

Sorry to hear you have got diabetes.
If you want to have a baby in the near future I would start planning now if I was you because I will not lie to you, it is very hard work! The more time you start planning ahead the better because it can drag on a bit. I am 32 now and feel like time is running out fast because after all the time it is taking me to get my blood controlled, I then do not know how long it will take to conceive and I would also like to have more than one baby!
If you mention to your diabetes team that you would like a family in the near future they should start getting you prepared straight away.
There is such a lot of information to take in on diagnosis and the emotional side never seems to be addressed.
I can certainly recommend this site because everybody knows what you are going through and it can be a great support. I have even been smiling today after weeks of frustration!
I hope things get better for you! Have a read through some of the posts about ladies who have had babies, it really cheers me up and makes me cry too (but in a happy way!)

 

[BeccaJaneStClair]

My GP knows because my diabetes was found as part of the baby-making processish -- basically, I had my Implanon removed in October and hadn't yet seen any ovulation, so my GP was running blood tests galore to help figure out why....then my glucose came back high so he had me do the glucose tolerance test and bingo. He thinks the reason for the lack of ovulation is due to the diabetes, so the current plan is lose at least 2 stone by August, do more fertility testing and then go from there baby-wise. Like you, I'd love to have more than one child, but it's going to depend on what happens in August...My husband and I agreed that we wouldn't have any (more if we've got one by then) children after I reach 35/36 since he doesn't want to be chasing a toddler when he's 50!

I'm 32 right now, too. We can be buddies

My husband has told me it's okay to cry and be upset because this is a huge lifestyle change. It's not fair and we don't deserve it, but I think it's how we handle it that makes the difference....burying our heads in the sand is all well and good (and what I'd love to do!) but taking the initiative to change our lifestyles for the better takes a lot of hard work!

 

[SugarPlumFairy]

Hello

I had similar problems to you caused by both contraception and diabetes. When I was first diagnosed with diabetes my periods were really irregular and sometimes non existant and then a few years later I had the contraceptive injection and after I stopped this my periods did not return for a year! I will add though that I did fall pregnant even when the periods were absent (had a miscarriage due to very high blood sugars and unplanned pregnancy).

If you can stay in a positive mind frame it will be great because you won't have the years of self neglecting that many of us with diabetes have. It is hard and it is unfair but I do wish I had tried harder from the start, especially when I hear about people who have complications, I feel like it is just a matter of time until I will also get them.

I would love to stay in touch with you as I suppose we are at very similar stages in our lives and I would love to know how you get on. I am at the hospital Thursday to see how I am doing so i will let you know how it goes and if I can offer any advice and tips that I pick up along the way I will let you know.

Of course it's ok to cry, it is a massive thing to deal with and it sounds like you have a really understanding husband which is fantastic. If you ever want to let off some steam to somebody who understands then just shout up!

There is a website called diabetic mommy that I look at too, it's American and has some lovely birth stories

 

[jopar]

SPF

I got 3 children, but my oldest was born before I was diagnosed with diabetes, when I had my 2 with diabetes it was a case of 2 injections a day combined with a very strict carbohydrate intake also timed intake of carbs... I had 130g of carbs spread over 3 meals and 3 snacks, they did try to start me on 210g's of carb, but I couldn't eat that much food :shock: I even struggled with munching my way through 130g per day :crazy:

As to carb amounts for the diabetic, I don't believe in extreme restrictions of carbs because a lot of people doing this don't ensure that they are getting all the nutrients they need so possibly storing trouble for a later stage... And for the pregnant women it's basically a no, no because a extreme low carb diet often puts the person at an increased risk of becoming constipated or very lose which poses problems while pregnant both on treatment side of things, as a too a strong laxative could start labour, and having the squitters puts the individual at high risk of dehydration and losing excessive amounts of nutrients...

Neither do I believe in 'eat what you want' because if you eat too much food then you get fat, which then causes all sorts of problems, What needs to be sorted is an amount of carbs that you can control easily, for some this may be 10, 20, 30 grams but for others they might find they can happily control 50, 60 90 plus grames per meal...

I'm pretty lucky in having a small appetite which has always served me well even before diabetes came along with never having any weight issues, and amounts of carbs I normally eat within a normal meal is more than easily handled...

So for me after 23 years of diabetes, I haven't go any complications at all, got my HbA1c results back today and they where 5,9% up slightly on my last lot, but I'm not moaning...

 

[CarbsRok]

To stop the spikes after meals try changing the timing of your bolus a bit better or even using the different bolus options.
Protiens and fats need to be calculated in your bolus.
If I ate eggs and bacon for breakfast I would need the same amount of insulin as I would for toast or cereals.

 

[BeccaJaneStClair]

I would love to stay in touch with you as I suppose we are at very similar stages in our lives and I would love to know how you get on. I am at the hospital Thursday to see how I am doing so i will let you know how it goes and if I can offer any advice and tips that I pick up along the way I will let you know.

Feel free to PM me anytime

 

[SugarPlumFairy]

Thank you again for all responses, it's been a great help, especially as I emailed my nurse days ago and she hasn't replied roblem:

CarbsRok, I did the DAFNE course and was told to only have insulin for carbohydrates and follow the little book they gave me, I also match insulin to carbohydrate portions to get the right dosage. This is worrying if I should be taking insulin for protein etc because I never do. How do you calculate how much insulin to take if there are no carbs? I will email my dietician about whether I should be doing this.

I have tried the timing thing and take my insulin approx 15 minutes before eating and it is working well, my readings are between 8-9 an hour after eating so it's not where I want it to be yet but getting there. Thanks for the tip!

Jopar, a lot of useful informaiton for me there thanks.
You have done really well, I pray for a HBA1c in the 5's, I think I will cry with joy if I ever do it!
It has taken me a long time to realise that it's the food I eat that makes my control bad. After years of being told to eat large portions of potatoes and rice etc to keep my sugars up?! :roll: When I went on the pump and had a carb free day to check my basal levels and I saw that it kept me even all day without food, it finally sunk in that it's the food that was the problem! I really was eating anything as long as I took enough insulin against carbs. The difference now that I have cut my portion sizes is shocking! I have also lost weight. It was hard at first because I did have a big appetite but now it's 3/4 weeks in and I am not craving chocolate or massive portions of carbs (also used to eat lots of takeaways!)

I have thought about going on a strict diet and eating at the same time everyday during pre-conception and pregnancy, it will be hard but worth it for the end result. My dietician has said to try and eat the same amount of carbs per meal but if i am not as hungry one day then that won't be easy.

I can see a real difference over the last few days from using tips from very kind people on this forum so thank you all! :clap: