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Have lots of questions

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Amberzak

Amberzak

Well-Known Member
Relationship to Diabetes
Type 1
Hi.

I've been diabetic for a while but never had good control. Just been put on levimer for my background insulin. And just been introduced to carb counting. Also want to try for a baby

I live a very stressful life, but it's fun stress. I make resources for teachers.

Oh, and I'm also a high functioning autistic. That adds problems.
 
Hi Amberzak, welcome to the forum 🙂 What insulin were you on before? Hopefully, the new regime and carb counting will help you to get things under better control 🙂 I believe that it's a good idea to ask about a pre-conception clinic if you want to try for a baby - have a browse of our Pregnancy section.

Please feel free to ask any questions you may have - however long you've been diagnosed there is always something new to learn! 🙂
 
Hi. Thanks for getting back to me.

Apparently I should have always been carb counting. I was on Latis and novorapid. But I was given a specific amount to take and was basically told to do trial and error.

I had a really good diabetic nurse who was referring me to carb counting. She changed me to levimer too. And we were looking at the pump. Then one day she just left. My doctors didn't really know what carb counting was and the nurse I was seeing admitted that she was more of a type 2 diabetes person. So I was back to guess work.

I was correcting all the time. And I was doing things like if I had a reading of 19, I would inject to bring me down but if they were still high an hour later I would do more insulin. I've been diabetic for about 8-10 years now. (It was caused by my immune system as I have some other condition, not really sure what it is or anything). To be honest, my doctors are awful.

Just got to see a new diabetic nurse a few months ago who got me on a carb counting course and got me a new sugar tester that tells me what insulin to give etc. Things have gotten better. I don't go low quite as often. She said she wanted me to just reduce the hypos for the next few months. But it's nearly impossible to actually make an appointment to see her. I have one in August, which is the first since November because there are never any slots. You can't go to the diabetes centres any more , it's all done at local doctors. So the idea of being referred to a pre-conception clinic would be lovely but I'm not sure it's going to happen. I have already told doctor my husband and I want to try (I'm 31) and he just said 'get your sugars under control first'. But I'm really really trying.
 
Amberzak said:
...You can't go to the diabetes centres any more , it's all done at local doctors. So the idea of being referred to a pre-conception clinic would be lovely but I'm not sure it's going to happen. I have already told doctor my husband and I want to try (I'm 31) and he just said 'get your sugars under control first'. But I'm really really trying.
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I'm not sure, but I believe you have the right to be referred to a specialist as you are insulin-dependent - if your surgery can't fulfil your needs then what other option do they expect you to take? It might be worth having a word with the people at PALS (Patient Advice and Liaison Service) to see what they can advise:

http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

Certainly, having a baby when you have diabetes involves far more care and attention than if you were non-diabetic. NICE has issued guidelines for this, so your GP must give a very good explanation for NOT referring you - and I can't see what explanation could be given. Have a read of the following:

http://www.patient.co.uk/doctor/diabetes-in-pregnancy

It sounds like, at last, you are getting some decent care from the new DSN, so try not to dwell on how you did things before, act as though this is all new and you are starting again. I would recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, which is a very comprehensive reference guide to everything concerning Type 1 and will probably contain a great deal of information that you have missed out on over the years. It's very well-written, not cheap but invaluable in helping you control your diabetes 🙂
 
Many thanks northerner. I've ordered the book. I'm going on holiday next week so it will give me some reading.
 
Hi amber, welcome to the forum.
In terms of pregnancy planning, you could try a book called "Balancing pregnancy with pre existing diabetes. healthy mom, healthy baby". By Cheryl Alkon.

It helped me get my head in the space.... lots of anecdotal information from type 1s (mainly based in North America) and most importantly makes you realise that it *can* be done - it's NOT impossible for us to have healthy pregnancies and healthy babies ! (We just need to work a bit harder that's all 🙂)
 
Hi amber welcome to the forum. I did a type one education course a couple of years ago and at one session a hospital doctor attended. He said if anyone was planning pregnancy they should be under their care before conception so they could be monitored all the way. So as others have already said you need to be referred. Hopefully your august appointment will trigger better care.
 
Thanks cleo, I will look that up. Also thanks Bessiemay. I've been looking into going private, but it's so expensive and my company is still so new that my income isn't regular.

I've been trying to get on the insulin pump for years.
 
Amberzak said:
Thanks cleo, I will look that up. Also thanks Bessiemay. I've been looking into going private, but it's so expensive and my company is still so new that my income isn't regular.

I've been trying to get on the insulin pump for years.
Click to expand...

Have you had help from INPUT? http://www.inputdiabetes.org.uk/

If nothing else they will probably know which clinics/hospitals near(ish) you are pro-pump.
 
Yes, I have looked them up. I'm going to talk to my new diabetic nurse about it, now I've finally gotten an appointment to see her.
 
Hi Amber, welcome to the forum.

All this uncertainty and waiting about for some sort of progress forward must be awful for you.

Ideally you'd be seen at the pre-conception clinic, and also put on a pump. But that's in an ideal world and it's not really fair that we have to wait around.

I have a real interest in HFA, and have always wanted to know how it would affect your diabetes (or vice versa).

That Ragnar Hanas book is fantastic - you'll hopefully enjoy reading it!
 
The book turned up this morning and I've been reading it all evening. 🙂

Miss_melissa, I will happily answer any question you have about my autism too. Don't know if it's best to do it on here or as a PM.

I will say this, in once sense it's really good because I tend to like routine, so I eat a lot of the same things. But because I don't like a lot of foods, I tend to eat lots of carbs. Potatoes and pasta is my main food type.
 
Reading this book, I'm starting to think I've missed out on other stuff. Type ones, do you all have ketone urine testing kits? And glycogen injections?
 
Amberzak said:
Reading this book, I'm starting to think I've missed out on other stuff. Type ones, do you all have ketone urine testing kits? And glycogen injections?
Click to expand...

You should request some blood ketone testing strips. I have an Optium Xceed meter which tests for blood glucose and ketones. Urine ketone strips are inaccurate, plus the ketones only show in your urine around 2 hours after they are in your blood. There are a couple of other meters that test blood ketones. I was very ill over the New Year and urine strips would have been useless to me.
 
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