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[TinkV]

Hi. I am so pleased I’ve found this forum after weeks of trawling google for reassurance. I was admitted to hospital at 32 weeks pregnant and treated for DKA. After being in hospital 4 days I had my baby by emergency c section. After the delivery I lost over 2 litres of blood and was very unwell.

I only went in hospital for a blood test as my inflammation markers were raised and didn’t return home for over a week. I would have had covid but didn’t know it at that point but my keytones were super high. I’ve been told I am pre diabetic but my bloods which were taken before delivery has come back positive for type 1. I believe there are 3 different sections for that blood test and for me one has returned positive out of 3. I’ve been told it’s only a matter of time. I’ve been wearing the libre since May.

I’m struggling with coming to terms with this diagnosis and the anxiety it now brings everytime I come to eat or think about eating. I definitely have up and down days. Last week I’ve had more downs and I just feel super sad. I’m a right foodie, as a family we love exploring new places and trying new foods.

I’m a mum of now 3 and I can’t bear the thought I might be so unwell il need to go to a&e as I currently don’t have insulin. My A1c (is that right) figure is 6.5/6.6.

I’ve joined lots of fb diabetic groups and follow some type 1s on tik tok but I don’t know if that makes me feel better or not. I just can’t shift the feeling of sadness.

 

[Inka]

Welcome @TinkV 🙂 It’s completely normal to feel sad - and even angry. A diabetes diagnosis is a shock at the best of times, but extra-stressful in pregnancy. I know at least three women who were diagnosed with Type 1 during pregnancy, but thought to have other forms of diabetes initially.

What I don’t understand is why you’ve been given no insulin. What are your blood sugar results like when you test? Do you have Ketostix to test for ketones?

 

[TinkV]

Welcome @TinkV 🙂 It’s completely normal to feel sad - and even angry. A diabetes diagnosis is a shock at the best of times, but extra-stressful in pregnancy. I know at least three women who were diagnosed with Type 1 during pregnancy, but thought to have other forms of diabetes initially.

What I don’t understand is why you’ve been given no insulin. What are your blood sugar results like when you test? Do you have Ketostix to test for ketones?

We talked about the options, I chose to wait and see rather than go straight onto insulin as my numbers had settled much more since giving birth. I have the libre and I have a keytone machine which I can use to test my blood sugar as well as keytones, just using different strips. I generally don’t go above 13. I only go up when I eat and Dr was reassured I always come down by myself.

However, last week I used the wrong strip and I thought my keytones were 6.5. I panicked and got myself in a state when it was actually my glucose reading. It brought back the feelings of when I was unwell in hospital and the panic of it all. Yesterday I didn’t end up having lunch, in the evening I had bao buns and some other picky bits and i shot up to 17. Again, I found that very stressful. I went for a walk to clear my head and help bring it down which it did.

I don’t feel angry - I feel super sad and like my life of eating nice things is over

 

[Inka]

When I was first diagnosed, I was put straight onto insulin. However, I experimented by missing my morning injection and my blood sugar went up to 13 and then came down to 3.8 by lunch. However, I never went as high as 17 even when I did these experiments : /

Also, it sounds like you’re having to restrict your diet. This is miserable and isn’t necessary with Type 1. The recommended diet for Type 1s is the same recommended diet for everyone. I eat normal meals and foods, including cheesecake, croissants, cake, pasta, bread, cereal, etc etc. It’s the insulin that allows me to do this and that limits the damaging spikes. Moreover, introducing insulin early can help preserve your remaining beta cells longer. This is what convinced me to stop my ‘missing out injections’ experimentation.

It’s your choice, but you might find things easier and less miserable with insulin, and you could eat well 🙂 Going high like you’re doing can make you feel rough physically and emotionally as well as potentially causing damage.

 

[TinkV]

When I was first diagnosed, I was put straight onto insulin. However, I experimented by missing my morning injection and my blood sugar went up to 13 and then came down to 3.8 by lunch. However, I never went as high as 17 even when I did these experiments : /

Also, it sounds like you’re having to restrict your diet. This is miserable and isn’t necessary with Type 1. The recommended diet for Type 1s is the same recommended diet for everyone. I eat normal meals and foods, including cheesecake, croissants, cake, pasta, bread, cereal, etc etc. It’s the insulin that allows me to do this and that limits the damaging spikes. Moreover, introducing insulin early can help preserve your remaining beta cells longer. This is what convinced me to stop my ‘missing out injections’ experimentation.

It’s your choice, but you might find things easier and less miserable with insulin, and you could eat well 🙂 Going high like you’re doing can make you feel rough as well as potentially causing damage.

The only other time I went to 17 was when I had ice cream in a ramekin with some special sauce when I got home from hospital. That scared me so I’ve not had ice cream since. On a whole I don’t go above 14. I’ve had kfc, macdonalds, pizza but I’m more selective about snacks and if I actually need them. I check food labels more than I’ve ever done before. Im trying to be more healthy on a whole but it has changed my attitude towards food and the enjoyment I used to get.

Ive read conflicting things about insulin. As in it’s not the sole answer to my life before diagnosis - you still have to monitor carefully and be prepared to correct it if you inject too much or not enough. What do you do when you go out for dinner and want lasagne say? How do you work out how much carbs so you know how much to inject?

I’m terrified of becoming super unwell or even worse. In June I lost my cousin to diabetes. She was 42.

I feel overwhelmed with everything I now need to consider.

 

[Inka]

If you’re Type 1, insulin is a life-saver. There’s no downside to it because Type 1s need insulin to survive. Yes, you need to ‘be your own pancreas’ and work out how much to inject, but that’s not too hard. You just count the carbs and use a ratio given to you by your team. There’s a logic to it. It’s not a random guess. You’ll also learn from experience what works for you 🙂

If you go out for a meal, you estimate the carbs based on portion size and similarity to what you’d eat at home. So, for lasagne, you’d be comparing it to a homemade one. You usually err on the side of caution and underestimate carbs. You can then give a tiny extra dose later if needed. It’s a bit like keeping a car straight on a road - a gentle steer that way, a gentle steer the other way. You can certainly eat ice cream with insulin.

I hope I don’t sound too direct, but I’m concerned not being bossy. It might be that you only need small amounts of insulin or maybe insulin just for your evening meal or whatever to begin with. You can use as much as you need. You’d be in control. You might have read that insulin makes you fat. That’s a myth but a pervasive one. It’s not true. I’ve been on insulin for almost 30 years and I’m slim and always have been. The insulin just replaces what my body can’t make. I hope that reassures you a bit. Please do ask anything you want here.

 

[Leadinglights]

Have they explained why they do not want to put you on insulin, is it because there is some doubt about your Type 1 diagnosis as there is only 1 marker that is positive. Do you know what tests were done?
I sounds as if you have been left in the lurch with no proper dietary advise. Without insulin you will need to be careful of your carbohydrate intake. Have they given you any other medication.
I'm not sure if this is relevant but are you breast feeding your baby as if you are you need a good diet to support that.

 

[Tdm]

If you are type 1, you will need insulin. Sounds like you still have some functional beta cells, but they will pack out sooner or later. And without insulin, it will be sooner.
Also, blood sugars over 10 will make you feel rubbish.
Did they say why they haven't started you on insulin?
And remember, it gets easier

 

[Saoirse]

Was it a GP or an endocrinologist who decided not to start you on insulin and have you been referred to a diabetes clinic (a proper one, at a hospital?). If you are type 1 you will get need insulin, and then once you can carb count you can eat nice things, or indeed whatever you want. It sounds like you have been left in limbo a bit because the way you were diagnosed is a bit unusual, please push for a referral to clinic asap.

 

[TinkV]

Have they explained why they do not want to put you on insulin, is it because there is some doubt about your Type 1 diagnosis as there is only 1 marker that is positive. Do you know what tests were done?
I sounds as if you have been left in the lurch with no proper dietary advise. Without insulin you will need to be careful of your carbohydrate intake. Have they given you any other medication.
I'm not sure if this is relevant but are you breast feeding your baby as if you are you need a good diet to support that.

I had a type 1 blood test when I was still pregnant and that got sent away and took weeks to return. When it came back one marker was positive. He said it was slightly more unusual cos it was the marker that normally comes back positive for children not adults but I’m 39 so def an adult .

I am breast feeding but I’ve just started adding a bottle too. I’m making healthier choices like I did in pregnancy really. Just with the bonus of now being able to eat some things pregnancy restricted.

I saw the Dr at the end of June who was the diabetic specialist I also saw when I was admitted. He’s still looking after me now. I got a letter today to see him in clinic in November. He said I can contact him any time and they have access to my libra data. Although with that whole libra update debacle I’ve lost my hospital data from May which was when I was admitted.

He said he could start me on a little or we could wait to see. At the time I saw hjm, I had only given birth 4 weeks previously and I although I held it together better than when I was admitted I was still devastated at the thought. Deep down I was hoping that the covid I didn’t know I had at the time had messed up my bloods and actually I wasn’t going to be diabetic at all.

 

[Leadinglights]

I had a type 1 blood test when I was still pregnant and that got sent away and took weeks to return. When it came back one marker was positive. He said it was slightly more unusual cos it was the marker that normally comes back positive for children not adults but I’m 39 so def an adult .

I am breast feeding but I’ve just started adding a bottle too. I’m making healthier choices like I did in pregnancy really. Just with the bonus of now being able to eat some things pregnancy restricted.

I saw the Dr at the end of June who was the diabetic specialist I also saw when I was admitted. He’s still looking after me now. I got a letter today to see him in clinic in November. He said I can contact him any time and they have access to my libra data. Although with that whole libra update debacle I’ve lost my hospital data from May which was when I was admitted.

He said he could start me on a little or we could wait to see. At the time I saw hjm, I had only given birth 4 weeks previously and I although I held it together better than when I was admitted I was still devastated at the thought. Deep down I was hoping that the covid I didn’t know I had at the time had messed up my bloods and actually I wasn’t going to be diabetic at all.

Thanks for explaining, it seems you are being looked after by the right people, if you are struggling then I wouldn't hesitate to contact the clinic. If you eat normally then you Libre data may then show that insulin would be a good idea sooner rather than later or equally show it is not needed you.
November does seem rather far away.

 

[TinkV]

Was it a GP or an endocrinologist who decided not to start you on insulin and have you been referred to a diabetes clinic (a proper one, at a hospital?). If you are type 1 you will get need insulin, and then once you can carb count you can eat nice things, or indeed whatever you want. It sounds like you have been left in limbo a bit because the way you were diagnosed is a bit unusual, please push for a referral to clinic asap.

Was diagnosed and treated by a diabetic specialist at hospital when I was admitted and I’ve seen him once since in clinic.

 

[Inka]

I would be worried that November was too far away too @TinkV I completely understand your feeling of hoping the diagnosis was a mistake. I hoped that too. I thought maybe I’d had some kind of temporary blip and that I couldn’t really have Type 1. I think because it comes out of the blue, that feeling can be quite common. That was one reason why I did my little experiments with missing insulin injections. I felt that for years after diagnosis actually - that it had all been some kind of mistake. It’s a hard thing to get your head around. I used to obsess over it and get upset at first.

It’s good you can contact your consultant at any time. Do bear in mind that if you’re restricting your eating, then they might not be getting the full picture from your Libre data. Type 1 can come on more slowly in adults, and it can come on slightly differently for some people. My consultant said mine was an “atypical presentation”. So, don’t be concerned by this.

I think you’re concerned about what being on insulin might mean? All I can say is that although it’s weird to start with having to inject, it does get much easier, and the injections are no problem. The needles are absolutely tiny - very, very thin and very short. Nothing like the injections you might get at the GPs. The insulin pens are simple to use too, and very discreet.

 

[TinkV]

If you’re Type 1, insulin is a life-saver. There’s no downside to it because Type 1s need insulin to survive. Yes, you need to ‘be your own pancreas’ and work out how much to inject, but that’s not too hard. You just count the carbs and use a ratio given to you by your team. There’s a logic to it. It’s not a random guess. You’ll also learn from experience what works for you 🙂

If you go out for a meal, you estimate the carbs based on portion size and similarity to what you’d eat at home. So, for lasagne, you’d be comparing it to a homemade one. You usually err on the side of caution and underestimate carbs. You can then give a tiny extra dose later if needed. It’s a bit like keeping a car straight on a road - a gentle steer that way, a gentle steer the other way. You can certainly eat ice cream with insulin.

I hope I don’t sound too direct, but I’m concerned not being bossy. It might be that you only need small amounts of insulin or maybe insulin just for your evening meal or whatever to begin with. You can use as much as you need. You’d be in control. You might have read that insulin makes you fat. That’s a myth but a pervasive one. It’s not true. I’ve been on insulin for almost 30 years and I’m slim and always have been. The insulin just replaces what my body can’t make. I hope that reassures you a bit. Please do ask anything you want here.

You don’t sound bossy at all, I’m really grateful for your support and advice.

 

[TinkV]

I would be worried that November was too far away too @TinkV I completely understand your feeling of hoping the diagnosis was a mistake. I hoped that too. I thought maybe I’d had some kind of temporary blip and that I couldn’t really have Type 1. I think because it comes out of the blue, that feeling can be quite common. That was one reason why I did my little experiments with missing insulin injections. I felt that for years after diagnosis actually - that it had all been some kind of mistake. It’s a hard thing to get your head around. I used to obsess over it and get upset at first.

It’s good you can contact your consultant at any time. Do bear in mind that if you’re restricting your eating, then they might not be getting the full picture from your Libre data. Type 1 can come on more slowly in adults, and it can come on slightly differently for some people. My consultant said mine was an “atypical presentation”. So, don’t be concerned by this.

I think you’re concerned about what being on insulin might mean? All I can say is that although it’s weird to start with having to inject, it does get much easier, and the injections are no problem. The needles are absolutely tiny - very, very thin and very short. Nothing like the injections you might get at the GPs. The insulin pens are simple to use too, and very discreet.

The day before I ended up giving birth I was going to go home with insulin and had been trained to use it - although I’ve forgotten it all now! I did struggle giving myself the fragment injections. I know I can do it although I hate needles because i understand I have too.

I just struggle cos I’ve never had to think about me and my mortality before and diabetes is serious stuff isn’t it. You get it wrong it can be disastrous. I feel like there’s so much to learn and I can’t take it all in. My life is a bit complicated. I’m just overwhelmed

 

[Inka]

That’s completely understandable @TinkV I really resented suddenly having a medical condition and having to go to the doctors what seemed like continually. It was annoying and scary. I think in your position with a young baby, it must be even more stressful. All I can say is that you’re not alone - we understand.

I’d also add that a Type 1 diagnosis now is a world away from a few decades ago. We have so much tech and things to help now. We’re also closer to a cure. There’s no good time to be diagnosed with Type 1, but there were far worse times in the past. Just having the Libre with its alarms makes all the difference and will help you relax. That and other CGMs are a game-changer.

(If you meant Fragmin injections, I didn’t have those but I had the Clexane ones which were big and a bit scary even though I’ve done thousands of injections over the years. The insulin pens are nothing like that at all. )

 

[Saoirse]

Thanks for explaining above. I wonder have you considered asking for a referrral to counselling or doing this privately if possible. It sounds like you have a lot going on and the opportunity to speak with someone neutral might help. Just a thought.

agree above, november is a bit of a long way off. Maybe ask of you can get moved up for an earlier appt and explain your concerns especially if you are restricting your diet. Having insulin, even small doses to start with may help. You can’t negate the need for insulin with type 1 with low carb (low carb can be a valid approach for type 2, other approaches are available) and while some type 1s ( including the excellent rebrascora) choose this approach you can eat a “normal” diet once you take the appropriate insulin for it. I eat pasta, pizza and cake alongside salad fruit and yoghurt etc and my last hba1c was 47 (I”m cured! (joke)). It does get better. Use your team, it is what they are there for. Wishing you the best.

 

[Inka]

Morning @TinkV I was thinking what helped me when I was first diagnosed. I think it was a combination of things really, and the big thing - Time. It does take time to get your head round things, but it honestly does get easier. Type 1 is a pain in the bum, but it’s something we can live alongside with. Think of it like an annoying lodger or similar. You can’t ignore them/it, but you develop ways of keeping the peace/keeping control, of dealing with them/it.

Secondly, what helped was understanding a bit about Type 1 - that it wasn’t my fault in any way, that it was nothing to do with what I’d eaten or the exercise I’d done or hadn’t done. It’s an auto-immune condition. I was told it’s 20% genes, 80% environmental. That means that you need the genes to develop it but most people with the Type 1 genes do not get Type 1. There’s an environmental trigger (or triggers) that causes the auto-immune attack on the beta cells in the pancreas. We don’t yet know what causes it, and there may well be more than one cause. Possible suspects are viruses, cow’s milk (hence the breastfeeding encouragement), a damaged gut and/or microbiome. So it was nothing you did or neglected to do. Knowing that made me feel a bit better.

Thirdly, I slightly detached myself from the whole thing. I had to do this anyway as I had and still have a needle phobia. So, I looked upon the Type 1 as a series of medical chores that had been added to my daily chores. I didn’t think about them so much as things I had to do to me, but as jobs I had to get done. Does that make sense? I put a little distance between myself and the diabetes. I think that helps a lot. It helps deal with it on a daily basis and longterm. It helps push it into the background a bit so you can enjoy your life and things you like. The diabetes chores have to be done but they’re not taking over your head.

Fourthly, I was lucky enough to be able to speak to someone else with Type 1. When I was diagnosed almost 30 years ago, there was no internet available. I spoke by phone and the relief afterwards was immense. I wasn’t alone and there was someone pretty much like me who understood and who was just a normal, regular person living their life. Now it’s so much easier to connect with other Type 1s. This forum is a fabulous place. Everyone here is helpful and supportive and understands. I also joined Diabetes U.K. (who run this forum) and like supporting a charity that funds research and receiving the regular Balance magazine and emails. It reminds me of all the other people like me round the U.K. and the world.

You’ll be ok - honestly. It’s a lot to take onboard but Type 1 can be controlled. You can still do the things you want to do, and still be a foodie. It will just take a little more thought. Insulin is your friend not your enemy. It’s a blessing not a punishment. It will allow you to live and to live well 🙂

Getting a Type 1 diagnosis and accepting it is a process. It takes time, but I promise it does get easier.

 

[Proud to be erratic]

Hello @TinkV, like @Inka I had an opportunity to (alas all too briefly, so many other things going on) reflect on what helped me when I was first diagnosed.

My circumstances might at an initial glance seem entirely different and not relateble to yourself: male, 74 later this week, fully retired, children grown up and living their own lives AND YET: the sudden need to remove my pancreas, thus undeniable insulin dependent diabetes; the immediacy of having to face up to Multiple Daily Injections (MDI); the consequential need to reorganise my daily routines; the rapid realisation that diabetes was "confusing complicated and contradictory"; and the FEAR of the unknown - all has some degree of comparison with yourself, even if the details are different. And now, here I am 3 and a half years on - alive, deceptively well, living a new way successfully and generally finding its "OK (ish)". I won't deliberately mislead you - there are moments when a day feels pretty ragged, but those days are occurring less often and when its not a ragged day it all feels surprisingly routine (now).

I fully agree with all that @Inka has said (sorry that sounds as though I'm the expert, not Inka - I'm definitely the novice!). The reality is that we surprise ourselves, get on with the new circumstances and adjust, developing new routines; because we have to! I happen to strongly believe in trying to gain a good understanding of the medical condition (not just the diabetes but any medical condition and indeed most things that are challenging me). That understanding takes time to "get hold of", is littered with contradictions (from friends, family, experts and cranks) and gaining that understanding can be downright tiresome. But it suits me to wrestle with "trying to understand", others prefer to simply accept the first statement and move on - that simple approach always comes back to bite me.

But my big message, as already said, it DOES GET EASIER. Not necessarily straightaway, but things do drop into place (or at least drop somewhere if not the ideal place!) and what seemed a mini-nightmare at first settles to an acceptable situation - albeit with compromises and adjustments. I still greatly enjoy my food, even though I begrudge the loss of spontaneity over my menu choices. I still do every activity I want to. I find workarounds when needed. I believe you will be fine, surprisingly quickly and today this forum offers you a huge support network for the things that are frustrating you; personally I'm much more wary of advice from the Internet at large - somehow the strangers on this forum seem genuine, concerned and willing to just help. I hope this helps and does not just sound like a series of platitudes. Good luck.

 

[TinkV]

That’s completely understandable @TinkV I really resented suddenly having a medical condition and having to go to the doctors what seemed like continually. It was annoying and scary. I think in your position with a young baby, it must be even more stressful. All I can say is that you’re not alone - we understand.

I’d also add that a Type 1 diagnosis now is a world away from a few decades ago. We have so much tech and things to help now. We’re also closer to a cure. There’s no good time to be diagnosed with Type 1, but there were far worse times in the past. Just having the Libre with its alarms makes all the difference and will help you relax. That and other CGMs are a game-changer.

(If you meant Fragmin injections, I didn’t have those but I had the Clexane ones which were big and a bit scary even though I’ve done thousands of injections over the years. The insulin pens are nothing like that at all. )

Sometimes I think I’m still hoping it’s a mistake/a blip.

Thanks for explaining above. I wonder have you considered asking for a referrral to counselling or doing this privately if possible. It sounds like you have a lot going on and the opportunity to speak with someone neutral might help. Just a thought.

agree above, november is a bit of a long way off. Maybe ask of you can get moved up for an earlier appt and explain your concerns especially if you are restricting your diet. Having insulin, even small doses to start with may help. You can’t negate the need for insulin with type 1 with low carb (low carb can be a valid approach for type 2, other approaches are available) and while some type 1s ( including the excellent rebrascora) choose this approach you can eat a “normal” diet once you take the appropriate insulin for it. I eat pasta, pizza and cake alongside salad fruit and yoghurt etc and my last hba1c was 47 (I”m cured! (joke)). It does get better. Use your team, it is what they are there for. Wishing you the best.

Thank you. I actually started counselling a few weeks ago because of the traumatic events leading up to the birth, I was lucky enough to get offered 6 free sessions. We briefly touched upon the diabetes but il def talk to her about it again when we next speak.

I enjoy walking when I have time and find this helps clear my head plus it seems to help the sugar levels drop. I think there’s just so much to learn and I have a lot of other things going on in my life which makes it a little more tricky. I know il find my way with it eventually and il deal with it like I always deal with the other things that happen. At the moment I’m really struggling to shift the sadness and I guess some of that is because it’s not straightforward and it’s going to take time to work things out. If it was just a case of giving an injection before I eat and everytine was the same amount, I could deal with it perhaps more easily. I’ve just brought some chia seeds to try on yougurt. I have no idea if that was a good idea or not but I’m sure I’ve read they are good for diabetics.