# Newly diagnosed



## Deleted member 25429 (Jul 20, 2019)

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 .


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## rebrascora (Jul 20, 2019)

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.


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## leonS (Jul 20, 2019)

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.


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## Deleted member 25429 (Jul 20, 2019)

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 .


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## rebrascora (Jul 20, 2019)

Denise Winthorpe said:


> No one told me about the need to have something sugary with me


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?


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## SB2015 (Jul 20, 2019)

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.


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## TheClockworkDodo (Jul 20, 2019)

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.


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## leonS (Jul 21, 2019)

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!


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## SB2015 (Jul 21, 2019)

... 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.


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## SB2015 (Jul 21, 2019)

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.


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## KARNAK (Jul 21, 2019)

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.


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## louloulou (Jul 22, 2019)

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 .



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


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## stephknits (Jul 22, 2019)

Hi and welcome from another late starter! Diagnosed 6 years ago at 42.


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## louloulou (Jul 23, 2019)

Hello


stephknits said:


> Hi and welcome from another late starter! Diagnosed 6 years ago at 42.


 how are you doing I was 40 when diagnosed Lou


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## Deleted member 25429 (Jul 29, 2019)

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 .


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## louloulou (Jul 29, 2019)

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 .



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


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## TheClockworkDodo (Jul 29, 2019)

That sounds absolutely bizarre, Denise 

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?


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## Deleted member 25429 (Jul 29, 2019)

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


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## TheClockworkDodo (Jul 29, 2019)

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!


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## Deleted member 25429 (Jul 29, 2019)

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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## Deleted member 25429 (Jul 29, 2019)

louloulou said:


> 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


I have been talking to my husband all evening about it as he came to the appointment with me . It’s very hard do you go against specialist advice ?x


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## TheClockworkDodo (Jul 29, 2019)

Denise Winthorpe said:


> 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


Would the brown roll spike you even if you injected more insulin with it?  For most of us type 1s, the whole point of having insulin is that you can eat what you want (within reason), you don't have to eat ultra low carb, _so long as you inject the right amount of insulin, at the right time, for what you eat_.  If I ate a largish brown roll at lunchtime I'd need a couple of units of insulin for it (twice that if I ate it for breakfast), and then it wouldn't spike me.  But if I only had one unit of insulin with it I'd expect a spike, because I wouldn't be matching the insulin to the food.

There are things which would spike me even with insulin though, so it may be bread is a big problem for you - we are all different.  I can eat yellow bananas with about 1.5 units of insulin and not spike, but if I ate a brown banana of the same size with the same amount of insulin I'd expect to spike at about 15/16 - they don't seem to agree with me.


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## Deleted member 25429 (Jul 30, 2019)

TheClockworkDodo said:


> That sounds absolutely bizarre, Denise
> 
> 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).
> 
> ...





TheClockworkDodo said:


> Would the brown roll spike you even if you injected more insulin with it?  For most of us type 1s, the whole point of having insulin is that you can eat what you want (within reason), you don't have to eat ultra low carb, _so long as you inject the right amount of insulin, at the right time, for what you eat_.  If I ate a largish brown roll at lunchtime I'd need a couple of units of insulin for it (twice that if I ate it for breakfast), and then it wouldn't spike me.  But if I only had one unit of insulin with it I'd expect a spike, because I wouldn't be matching the insulin to the food.
> 
> There are things which would spike me even with insulin though, so it may be bread is a big problem for you - we are all different.  I can eat yellow bananas with about 1.5 units of insulin and not spike, but if I ate a brown banana of the same size with the same amount of insulin I'd expect to spike at about 15/16 - they don't seem to agree with me.


If I was going to eat a roll I wouldn’t spike now as I know how much insulin I need to stop that happening. I have kept a food diary to help also worked out the carbs . Woken up feeling rotten high sugar levels, think I’m going to ignore her advice and speak to the diabetic nurse tomorrow


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## SB2015 (Jul 30, 2019)

Good morning @Denise Winthorpe 

As @TheClockworkDodo said, we each need as much insulin as we need, and when I was using pens I ended up getting a half unit pen (children’s and nice colours with stickers!!!) as I needed such tiny amounts of insulin, it was also one of the reasons I switched to a pump where I can make changes if 0.1 units.

I am surprised that your consultant is suggesting that your levels should be higher after 8 weeks, and confused about their change of mind about type.  I do know that there is a lot of confusion when showing symptoms as an adult, but the Gad antibody and c-peptide tests can confirm this.  If T1 or even LADA there are pesky antibodies destroying your beta cells, and you need to take on the work that they were doing.  You need to be giving insulin.  I would ask for eh tests if these have not yet been done.

Well done on reducing your carbs to enable you to get your levels back in range.  They should offer you an education course on how to adjust your doses to match what you choose to eat, whether that be high or low carb.  Later you can then star to look at timing of doses to fine tune your levels.

Good to hear your husband attended the appointment with you.  Having someone else there can help to prompt you to ask questions that you may have forgotten to ask, and help clarify things after the appointment.  
What reason did they give you for wanting higher levels?  They often tell people that it is to avoid hypos.  However with the modern equipment we are able to manage things a lot more easily and keep things a lot safer.

That is a bit of a diatribe.  I will stop and wait for more news.


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## SB2015 (Jul 30, 2019)

Ps The quality of consultants vary. You can ask to see a different one.


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## Nomad722 (Jul 30, 2019)

Hi Denise,  Sorry to hear it, try not to worry too much, there are a lot of type1's here who will offer much comfort  By the way if that's your real name you might need to ask the admin to change it as they consider it 'risky.'


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## Deleted member 25429 (Jul 30, 2019)

Nomad722 said:


> Hi Denise,  Sorry to hear it, try not to worry too much, there are a lot of type1's here who will offer much comfort  By the way if that's your real name you might need to ask the admin to change it as they consider it 'risky.'


Thanks I’ve contacted the admin to get it changed .


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## Deleted member 25429 (Aug 15, 2019)

Just been to see the diabetic nurse at the hospital, at last got some support . Blood tests have confirmed I have high levels of two of the antibodies . So confirmed type 1. I can now laugh at the surgery nurses comment when she said I was too healthy to be type 1 . This forum is amazing at supporting us newbies . Thank you


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## TheClockworkDodo (Aug 15, 2019)

So glad you've got confirmation of your type 1 diagnosis at last, and also some support from the hospital nurse - hope you managed to get her contact details for future reference!  Hospital diabetes nurses are often the most knowledgeable people, I always find them more helpful than consultants.

Your surgery nurse sounds clueless though - "too healthy to be type 1"?   We have marathon runners and cyclists and all sorts on here, and there are professional athletes, rugby players, and football players who are type 1!


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## Deleted member 25429 (Aug 16, 2019)

Yes thanks I have got the contact details for the nurse . I think the nurse at the surgery and the consultant were making sweeping comments based on my low insulin need ( obviously still in honeymoon period at the moment ) and my HbA1C initial test result . My favourite rugby player is type 1


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## SB2015 (Aug 17, 2019)

Freddie1966 said:


> Yes thanks I have got the contact details for the nurse . I think the nurse at the surgery and the consultant were making sweeping comments based on my low insulin need ( obviously still in honeymoon period at the moment ) and my HbA1C initial test result . My favourite rugby player is type 1


Glad that you now have the correct diagnosis Freddie.

It makes things a lot easier, but as you have found things can be fairly unpredictable at the start, as you go through the Honeymoon Period.  You can now start to work on adjusting ratios etc.

If Harry can do it, running around the rugby field, then we can


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## Nomad722 (Aug 17, 2019)

Some further information for you Freddie1966, I sometimes feel the same although most likely for different reasons as I am a borderline diabetic.  Just walk into a shop if you near one if you feel a bit strange.  I don't know if this will help but maybe keeping a little snack with you might help (my mother used to keep a few biscuits and cakes for when she was driving the car if she felt 'funny').  Keep your chin up.


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## TheClockworkDodo (Aug 17, 2019)

Just to point out that biscuits and cakes - though better than nothing - are not really ideal hypo treatments as the fat in them will slow down the action of the carbs.  Anyone on insulin should carry really fast-acting carbs, like dextrose tablets, jelly babies, glucose gel, or fruit juice, with them all the time.

Going into a shop might be a good idea if you need help though - I went in the cafe at Dunelm Mill once when I was hypo and asked for help, and they were lovely (I had my own hypo treatment with me, but they supplied a seat and biscuits to stabilise my blood sugar after I'd treated the hypo).


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## Deleted member 25429 (Aug 17, 2019)

We have cartons of orange juice strategically placed around the house. We also have them in both cars, in my handbag, and on my desk at work . I also have Melba toasts as they come in a small packet . The one snack I do find that works for me mid morning is a raw carrot . Not very exciting but it does what I need it to do


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## SB2015 (Aug 22, 2019)

Freddie1966 said:


> We have cartons of orange juice strategically placed around the house. We also have them in both cars, in my handbag, and on my desk at work . I also have Melba toasts as they come in a small packet . The one snack I do find that works for me mid morning is a raw carrot . Not very exciting but it does what I need it to do


Nothing wrong with a nice raw carrot.  I will happily chomp on one of those.

How are you managing now?  Are they helping you to adjust your insulin for different meals?


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## Deleted member 25429 (Aug 22, 2019)

Much better since I saw the specialist nurse thanks . Still in the honeymoon period so a little unpredictable over the last two days


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## TheClockworkDodo (Aug 22, 2019)

The changing weather will also have an effect - I can't remember whether anyone has mentioned that already on this thread, sorry - but you may well find you need more/less insulin when it's hotter than when it's colder.


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## Deleted member 25429 (Aug 23, 2019)

Thanks for the info . I am feeling better than I have in months . Still struggling to get enough sleep . I don’t know if it’s diabetes related or not x


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## SB2015 (Aug 23, 2019)

Freddie1966 said:


> Thanks for the info . I am feeling better than I have in months . Still struggling to get enough sleep . I don’t know if it’s diabetes related or not x


Good to hear that things are settling for you,  and it is only when you have got some insulin going in that you realise just how ill you were before diagnosis.  You will gradually get to know what to change and when.

Just keep asking any questions that you have.


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## Nomad722 (Aug 27, 2019)

TheClockworkDodo said:


> Just to point out that biscuits and cakes - though better than nothing - are not really ideal hypo treatments as the fat in them will slow down the action of the carbs.  Anyone on insulin should carry really fast-acting carbs, like dextrose tablets, jelly babies, glucose gel, or fruit juice, with them all the time.
> 
> Going into a shop might be a good idea if you need help though - I went in the cafe at Dunelm Mill once when I was hypo and asked for help, and they were lovely (I had my own hypo treatment with me, but they supplied a seat and biscuits to stabilise my blood sugar after I'd treated the hypo).



At the moment I don't really know what hypos are. Mum wasn't on insulin she was at the time a type2 and a former nurse.


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## TheClockworkDodo (Aug 27, 2019)

Oh, I see - if she wasn't on hypo-inducing meds her needs would have been a bit different from the treatment Freddie1966 would need for a hypo on insulin.  Be glad you don't know what hypos are, they're not fun!


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