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Newly diagnosed

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I have recently been diagnosed type 1 after ending up in hospital with DKA . At the age of 52 this has been a shock . I keep reading the forum as I have found it really useful. I’m having some dark days but I am lucky to have the support of my amazing husband . I left hospital in Devon being told to take certain doses of novarapid and lantus. No one explained that these would need adjusting, or what the blood sugar levels should be . The next day had a hypo luckily I was at the doctors. Finding it hard to go out with confidence that I will be okay .
 
Hi Denise and welcome. You have had a rough start by the sound of it. Did they give you a Blood Glucose Meter? They really should have.
Being in shock about the diagnosis and having your confidence knocked by your first hypo is very normal. I am still scared by hypos but reduce the risk by eating very low carb food and therefore minimising the amount of NovoRapid I need. I was prescribed 4 units with each meal but I rarely use more than 6 units a day plus my basal insulin Levemir (the equivalent of your Lantus). It takes time to figure it all out and get on courses to help you learn and I really don't think healthcare professionals understand how scary a hypo is when you have never experienced one before. They make you feel very vulnerable. My first proper one, I was at home alone, but I had a fake one where I came down from a reading of 15 to 5 in a matter of a couple of hours and I was travelling in the car.... thankfully a passenger... but a long way from home and was ill for the whole day afterwards and just lay in the car snoozing until we headed home. Thankfully I don't have such big drops but I have had quite a few proper hypos and I am getting used to handling them and they do respond very quickly to treatment. I hope they explained to you when they gave you the insulin that you need to carry hypo treatments with you at all times??

Anyway, just wanted to reassure you that the way you are feeling is totally normal. Great to hear that you have a supportive partner. I have a fantastically supportive sister and close friend who both really understand and try to learn as much as possible to help me but my partner eats a lot of cakes and biscuits in front of me and has the cupboards jammed full of them and it is quite hard. He does buy me salad and avocados when he does the shopping run though.
Good luck with learning to balance your food and insulin and mention that you would like to attend a DAFNE (Dose Adjustment For Normal Eating) course to your Diabetes Team and they should put you forward for it.
 
Hi, and welcome,

Actually it is good that you had a hypo! You will have gained some idea of what if feels like and I hope, some idea of what to do. Good too that you were at the Doctor's so that there was help and treatment at hand.

You need to make sure that you have some hypo treatment with you at all times - some form of sugar or glucose tablets.

Remarkable that they can give you a very powerful drug with so very little explanation of how it should be used!

Remember: wise people ask questions, wiser ones ask the right questions, the wisest ask the right questions of the right people.
 
Thank you for your kind reassuring words. I agree no one knows how scary a hypo is unless they have experienced one . No one told me about the need to have something sugary with me . I now have cartons of orange juice everywhere as I find they work well if I have low blood sugar levels. I have lost six stone in the last year so I’ve not had to make adjustments to my eating . I have managed to reduce my lantus to 14 units , don’t often need the novarapid I find it drops my sugar levels very very quickly .
 
Denise Winthorpe said:
No one told me about the need to have something sugary with me
Click to expand...
That is negligence of a pretty high level. It is really lucky that you had your first hypo when you did.
Do you drive? If they did not explain the need to carry hypo treatment with you then I am wondering if they explained the law relating to driving when you are using insulin?
 
Hi @Denise Winthorpe

I was just a year aloder than you when I was diagnosed with Type 1.
As you say it is a massive shock, and a very steep learning curve.

I still remember my very first hypo, and promptly ended up back in hospital as I had passed out.
I had been told what a hypo was but just didn’t recognise what was happening. Now I do.

Any way welcome to the forum. Over the past 12 years I have learnt most of what I know from others on here, who are also living with condition day by day. I will be back with more info, but just wanted you to know that you are not alone and that it is very understandable to lose confidence initially. BUT it does all get a lot easier.

Keep in touch, keep asking questions.
 
Hello Denise, and welcome 🙂

I was 44 when I was diagnosed (also in hospital with DKA), and there are quite a few other late starters on here too.

Novorapid is a type of fast-acting insulin, it's supposed to be injected when you are eating meals with carbs in them, so it's supposed to work quickly to stop the carbs spiking your blood sugar. If you are like me and eat quite a lot of carbs, then you'll always need to have Novorapid with meals, but if you're like Rebrascora and eat a low carb diet, then you will find - as you have - that you don't always need it. There is no right way with type 1, so it's entirely up to you what you eat (though you'll find there's always an exception which you really can't eat without it causing high blood sugar - might be banana, might be pizza, it's a very individual thing), you just need to remember that whatever you eat you need to balance the insulin against the carbs.

We all need different amounts of insulin, again there's no right or wrong to it, so it doesn't matter if you need 14 units of Lantus or 4 units of Lantus or 40 units of Lantus, so long as you get the right amount for you. The same applies to the Novorapid. The doses they put you on when you leave hospital are a "best guess" based on what you needed in hospital so are always likely to need adjusting when you're back to normal life (and frequent adjusting after that, tbh). It must have been scary that they didn't explain that to you, and it's awful that no-one told you to keep something sugary with you at all times 😱 I woke up having a hypo in the night every night for the first week I was out of hospital (I'd been put on 16 units of Lantus and only needed 6!), but thankfully they'd explained hypos to me, and I'd had one in hospital, so I just got up and had a jam sandwich every night (not ideal hypo treatment, orange juice is much better) and it actually didn't bother me that much. Hypos do vary though - the ones when your blood sugar plummets rapidly are much more unpleasant than the ones when it goes down slowly.

Anyway, please do ask if you have any questions about anything, someone here is sure to be able to help. And don't worry, you will regain your confidence soon - dealing with something like a type 1 diagnosis is daunting for everyone at first, but you very soon adapt to it and go back to normal life, and it just becomes a minor annoyance you have to work into your daily routine.
 
Almost anything sugary will do to treat hypos. Jam sandwich is not the worst thing as the jam provides quick readily available sugar and the bread a longer acting carbohydrate. Nothing is perfect and it is just what you find most convenient.

As a (very) rough guide a person needs about 0.5 to 0.7 times his or her body weight in kg each day as insulin in units. Your low dose suggests that you are still making a lot of your own insulin. This will help greatly in keeping good control as the body will tend to increase insulin production when BG goes up.

About half of the insulin should be the long term base insulin and half rapid acting. This depends on how much carbohydrate you eat.

As others have pointed out we are all different, so these figures are not to be taken as a guide to treatment.

You have to expect your insulin requirement to increase over time. Just keep testing the BG (blood glucose) and be prepared.

If you feel as if you have to take a four year university level course in this subject in three days that is because that is about the size of it. Sorry!
 
... but having taken the degree in T1 in three days (I like that analogy) it does get easier.

I compare it to learning to drive (I was a late starter at that too). It seemed very complicated at first and now I drive without thinking about how to change gear etc, it is just normal stuff you do after a while. You do have to keep a watch for the unexpected, watch fo things that make you change your route, and that is just how it is with Diabetes.

As others have said we all need different amounts of insulin and your Diabetes Specialist Nurse will work with you to find the appropriate starting point. Keep in touch with them and they will teach you how to adjust your own doses to match what you eat. At the start they put me on fixed doses and off I went and then we worked on changing things based on my records that they asked me to keep.

It takes a bit of time for your body to get used to having lower levels and they will often want to bring you back on target gradually at the start. Once there you will find you wobble around whatbthey suggest, just as we all will have done (and still do!). They are targets and each day will be different and we simply get as close as we can, learning from what we have done before.

Plenty of help available on here, so just ask ANY questions that you have. No questions are considered silly on here. Just ask.
 
Ps Jelly babies take up less space in my bag than juice for when out and about for hypos.
Like you I use juice at home as that hits the spot more quickly.
 
Hello Denise welcome to our wonderful forum.🙂 You being a Debum girl and me being a Debum boy have fings in common.😎 Baint be mattering if you are from sumwhere else, you live in our wonderful county. Afraid the Debum dumplings will have to go,:( pasties is a no no unless you can inject two pens of NovoRapid orally.😱 All joking aside thankyou for coming on board, the pleasure is ours.🙂
 
Denise Winthorpe said:
I have recently been diagnosed type 1 after ending up in hospital with DKA . At the age of 52 this has been a shock . I keep reading the forum as I have found it really useful. I’m having some dark days but I am lucky to have the support of my amazing husband . I left hospital in Devon being told to take certain doses of novarapid and lantus. No one explained that these would need adjusting, or what the blood sugar levels should be . The next day had a hypo luckily I was at the doctors. Finding it hard to go out with confidence that I will be okay .
Click to expand...

Hi Denise and welcome I was also in hospital in intensive care and its a real life change and scary I also on Insulin 5 times a day Lou
 
Just been to see the consultant and even more confused . She was questioning whether I had a dka although I have a letter from another hospital saying it was . She’s also said she doesn’t think I’m type 1 as I don’t need much insulin. She never asked me whether I had a low carb diet which I do as I’m trying to loose more weight. I’m so confused don’t know what to do. She’s also told me my sugar levels need to be higher , I am normally between 6 and 10 .
 
Denise Winthorpe said:
Just been to see the consultant and even more confused . She was questioning whether I had a dka although I have a letter from another hospital saying it was . She’s also said she doesn’t think I’m type 1 as I don’t need much insulin. She never asked me whether I had a low carb diet which I do as I’m trying to loose more weight. I’m so confused don’t know what to do. She’s also told me my sugar levels need to be higher , I am normally between 6 and 10 .
Click to expand...

I am sorry you are as confused as me they don't make this journey at all easy its bad enough living with it. From my point 10 is high for me I am told between 6 and 8 good for me Lou
 
That sounds absolutely bizarre, Denise o_O

Firstly, if she doesn't think you're type 1, she can do tests to find out definitely one way or another, if they haven't been done already. If they have and you've been diagnosed with type 1, then you're type 1 - it's not something that's a matter of opinion! If the tests haven't been done then do ask if they will do them if there's any doubt - the ones you need are a GAD antibody test and a C-Peptide test (they are just blood tests, but the C-Peptide results take a while to come back and they often don't bother to do it when the diagnosis is obvious for other reasons).

Secondly we all need exactly the insulin we need - not needing much has nothing to do with what type you are (and in fact, if you were type 2 on insulin you might well need more insulin than many type 1s). Do you know what your insulin to carb ratio is? Most people assume 1 unit of insulin to 10g carbs, but some of us do need a lot less (and it can vary through the day) - at lunchtime I can need as little as 1 unit of insulin to 28g carbs, which is a very tiny amount indeed. And I'm only using 5 units of basal (the equivalent of Lantus), sometimes I only need 4 units.

The usual guidelines for blood sugar targets (from the diabetes UK site) are:

If you’re an adult with Type 1 diabetes
  • when you wake up and before you’ve eaten: 5 to 7mmol/l
  • before meals at other times of the day: 4 to 7mmol/l
If you have Type 2 diabetes
  • before meals: 4 to 7mmol/l
  • two hours after meals: less than 8.5mmol/l
so 6-10 is on the high side of healthy already, the suggestion that you should be higher is really odd. Did you ask her why?
 
She said I needed to be higher because I was newly diagnosed . I was diagnosed 8 weeks ago. I find 1 unit of novarapid keeps the sugar levels steady no spikes or big drops but she said it isn’t worth using just 1 unit . I have an appointment with the diabetic nurse Wednesday I’m hoping she will be more helpful. Thanks to this forum for getting me through the last 8 weeks
I have noticed mine change with the time of day as well
 
Were your levels very high when you were first diagnosed? She may mean that it's safest for them to come down slowly, as if you're going from (say) 25 to 5 you ideally want to do it over a couple of weeks rather than all at once. But if your readings are already 6-10 it seems to me a really odd thing for her to say. I could understand it if she said to try to keep them 6-10 for now, to avoid hypos, but I can't understand her wanting them higher still.

It sounds as though (assuming your initial diagnosis was correct and you are type 1) you are still in the honeymoon period, when your body is still putting out a bit of its own insulin, so you're not needing a lot of extra to keep it going, and the extra that you're injecting is giving your pancreas a boost. This is normal, especially in type 1 in adults, but it doesn't usually last.

I sometimes use 1 unit, for a snack, or as a top-up if I've split my lunch. I was told it wasn't worth bothering with half a unit! 🙂
 
They were at about 24 when I had the dka . But that was 8 weeks ago and I have gradually got them down . If I ate a brown roll now they would spike at about 15/16 I have chosen to eat very low carbs
 
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