# just been told im type 1...joy



## adam kerby jones (Dec 20, 2013)

Hey all

After feeling tired, drinking a lot and passing urine far more often than usual my fiancees nagging for 5 weeks has paid off...been diagnosed as type 1 this afternoon. My blood sugar level on the test was 29.1 so they freaked a little but I feel fine, just the usual tiredness. I've not had a great deal of help from the doctors though, no idea on when to use the insulin or anything, just know ive got more tests at the hospital tomorrow.

What's it like living with type one diabetes then? I'm a 22 year old male, with a baby due at the end of April (luckily my partners tests have all come back fairly average as any child born into a life of injecting all the time must suffer some consequences).

Fingers crossed for tomorrow hey?


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## Northerner (Dec 20, 2013)

Hi Adam, welcome to the forum  Sorry to hear about your diagnosis, I imagine all sorts must be going through your head at the moment. The good news is that diabetes is a condition that can be managed well, and it doesn't need to stop you from doing anything. Treatments are improving all the time, and there is a wealth of knowledge and experience for you to draw on, whatever problems you might encounter, so it's good that you found the forum so soon.

It can be a bit of a baptism of fire, with a lot to take in at the very beginning, but do try not to get overwhelmed with everything. I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, which is the best guide available to Type 1 diabetes and all that it entails and a great reference. 

Have you actually been given any insulin yet, or will that come tomorrow?

I was diagnosed just over 6 years ago, and although I have had to make some changes they have all been ones that have benefited my health. Things can take a bit more planning to achieve, but I am able to eat pretty much the same stuff I was eating before, with a few tweaks, and it has not restricted me in any way. The injections are often the forst thing that people think of, but in fact the needles are so tiny they barely register. The main challenge is getting to know your body and the way it reacts to different food and activity levels, and this is something that is built up through experience, guided by some common principles.

Please ask any questions you may have and we will be happy to help out - nothing is considered 'silly', so if it is bothering you - ask away!  Let us know how things go tomorrow.


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## adam kerby jones (Dec 20, 2013)

Hey northerner,

Thanks for the reply. It is indeed a lot to take in, and it's weird as it has the same feeling when I found out I was going to be a dad...hasn't sunk in and just feels weird.

They've given me Novorapid flexi pen something or other, had to then drive the other side of Ipswich to get the needles and a sharp disposable bin.

I'm freaking out about it all I admit, saw my uncle go blind through diabetes so not really got a good view on it


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## delb t (Dec 20, 2013)

Hi Adam-sorry you have to be here- but glad you found us so soon.My son is 17 and been diagnosed for 2 yrs now.Ok..... to start with there will be alot of info/dietician advice etc to take in -it depends on what insulin regime they put you on.We are on 1 long acting injection and then a fast acting injection taken prior to meals.Try to write down a few/well lots of notes -it is a case of info overload! but you will get it after a while{ honest] push to be taught carb counting from the start- or ask to go on a course- because basically you will be matching your insulin to the carbs in food.-if your sporty ask for advice for this{ ours wasnt great] it is a case of trial and error as sport affects everyone differently.[my son has just done his first half marathon with ease so we are getting there!] as your newly diagnosed dont be alarmed if your appetite is HUGE for a few weeks this will calm down.... everything is managable just more planning needed and feel free to come on here to ask ..someone always knows the answer.Welcome from me


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## Northerner (Dec 20, 2013)

adam kerby jones said:


> Hey northerner,
> 
> Thanks for the reply. It is indeed a lot to take in, and it's weird as it has the same feeling when I found out I was going to be a dad...hasn't sunk in and just feels weird.
> 
> ...



Well, I'm guessing that your Uncle was probably diagnosed some time ago. As I mentioned earlier, things have really come on - even since I was diagnosed in 2008. You will get regular checks to ensure there are no problems with your eyes, feet, kidneys, blood pressure, cholesterol, so if there is even a hint of anything then it will be caught at the earliest opportunity and therefore easily treated. It does require some work and quite a bit of head-scratching at times, but one saying I always bear in mind is "Well-controlled diabetes is the major cause of....absolutely nothing!" 

Have you been told to take certain doses with the pen before meals?


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## adam kerby jones (Dec 20, 2013)

He was diagnosed about 45 years ago haha, he never looked after himself but it still scares the bejesus outta me.

I've not been told anything at all other than 6 on the lil twisty thing on the pen...that's it. The doctor did my first ever insulin injection earlier on for me, didn't feel a thing so I know that's nothing to worry about, plus I'm covered in tattoos so a tiny needle doesn't phase me haha


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## Northerner (Dec 20, 2013)

adam kerby jones said:


> He was diagnosed about 45 years ago haha, he never looked after himself but it still scares the bejesus outta me.
> 
> I've not been told anything at all other than 6 on the lil twisty thing on the pen...that's it. The doctor did my first ever insulin injection earlier on for me, didn't feel a thing so I know that's nothing to worry about, plus I'm covered in tattoos so a tiny needle doesn't phase me haha



Hmm...yes, things have changed a bit since your uncle was diagnosed then! We have many members here who have been diagnosed for decades and who have not experienced any problems. There are no guarantees in life, but there has never been a better time to be diagnosed with diabetes, as long as you respect it!


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## Mark T (Dec 20, 2013)

Welcome to the forum Adam


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## am64 (Dec 20, 2013)

welcome from me too ...sorry to hear of your dx ...you done well finding this place so quickly there are some very experienced folk on here who will help you out ...remember no question is regarded silly here


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## adam kerby jones (Dec 20, 2013)

Thanks guys,

Was wondering what sort of food/drink I can or can't eat...bloody starving and fed up with water haha


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## am64 (Dec 20, 2013)

need a T1 to come in and help out here ...you really have been left out in the lurch tonight havent you grrrr ... avoid all obvious sugar but then it depends how low or high your sugar levels are at the moment ...im sure someone will be in soon to help you further


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## Redkite (Dec 20, 2013)

Hi Adam, sorry to hear of your diagnosis.  I know what a massive shock it must have been (my son was diagnosed aged 4 and it turned our world upside down).  Do buy yourself a copy of the Ragnar Hanas book, it's the most helpful resource I have come across and I guarantee you'll find it invaluable, especially at times when you can't get hold of your clinic team!

Have you been discharged from hospital with an insulin pen and no information at all?  Have you been given a blood glucose meter to do fingerprick tests?  And info about hypos and the possible symptoms?  Usually, hospitals are quite cautious with the dose of insulin they advise for newly diagnosed patients, to avoid your blood glucose dropping too low (hypoglycaemia), but it's always advisable to carry some dextrose tablets or jelly babies with you, just in case you experience the shaky feelings associated with a hypo.

Don't worry about your baby having a diabetic Dad - I know lots of type 1 parents, and their kids grow up accepting it and becoming quite knowledgeable and sensible.  A girl in my son's class whose Mum is type 1 realised that my son was hypo (and unaware himself) and asked him if he was ok and got him to check his levels.  Other than that, it doesn't alter your character or the essence of who you are


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## Redkite (Dec 20, 2013)

Just seen your last message, which you must have posted while I was typing mine.  I can't believe my ears!  When did you last eat something?  There is no need for you to starve yourself.  You say you were injected at the hospital - were you given a meal there?  What insulin have you been given (the name should be on the cartridge inside the pen)?

If it is novorapid, that is an insulin which is designed to be injected just before eating a meal.  On the other hand, if it is novomix, that would be a mixture of short and long acting insulin, designed to be injected twice a day, usually before breakfast and dinner.  If they have told you to dial up a fixed dose of six units for the time being, you should follow that advice, then eat a normal meal, e.g. a sandwich (2 slices of bread) or a cooked meal with some carbohydrate in it (potatoes, pasta, rice, etc.).  Or you could have a bowl of cereal.  You will eventually need to learn all about counting your carbohydrates and matching them to your insulin dose (so you will then be able to eat what you like), but to start off with, your hospital will keep it simple, ie. fixed doses of insulin before your meals, try to keep portion sizes consistent, and test your blood glucose (keeping a record of the results).  Then your clinic team can help fine-tune your insulin dosage.

Don't panic if your BG levels stay high for the first week or two - it's important to take it gradually.  And you must eat, as your body will have literally been starving itself due to lack of insulin before you were diagnosed.  Please do ask any questions and we will try to help.

Did the doctor inject you with your flexpen?  I am staggered that they sent you home without telling you a thing!!!


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## am64 (Dec 20, 2013)

thanks redkite ...i knew someone would be in with more info  dont think adam has been seen by the hospital ..he says his doctor injected him some insulin ...


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## Redkite (Dec 20, 2013)

am64 said:


> thanks redkite ...i knew someone would be in with more info  dont think adam has been seen by the hospital ..he says his doctor injected him some insulin ...


You mean it was a GP that just injected him and sent him home via a pharmacy?


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## am64 (Dec 20, 2013)

adam kerby jones said:


> He was diagnosed about 45 years ago haha, he never looked after himself but it still scares the bejesus outta me.
> 
> I've not been told anything at all other than 6 on the lil twisty thing on the pen...that's it. The doctor did my first ever insulin injection earlier on for me, didn't feel a thing so I know that's nothing to worry about, plus I'm covered in tattoos so a tiny needle doesn't phase me haha



can you believe it ?


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## Redkite (Dec 20, 2013)

It's appalling.  Type 1 diabetes is a life threatening condition (at least the GP did give some insulin, there have been cases of people being sent away and later ending up hospitalised in critical condition).  But to hand someone insulin with no information as to its use - that is negligent.  I am so angry to hear this


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## adam kerby jones (Dec 21, 2013)

Hey all

Yeah the doctor took my blood sugars and gave me some insulin, I was told to go to the hospital this morning for tests, I get there only to be told that I've got no appointment and therefore can't be seen. I've got to go back Monday and just hope they'll see me.

I've been given a novarapid pen, then I had to go to the pharmacy to collect the needles and the bin for them. Pretty peed off atm as no-one in a professional capacity has helped me one little bit, my fiancees cousin has been type 1 for the last 6 years so were going to talk to her and hopefully get a finger prick test just to see what's going on...as I said I'm freakin out a lil bit but you guys are a massive help


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## Northerner (Dec 21, 2013)

adam kerby jones said:


> Hey all
> 
> Yeah the doctor took my blood sugars and gave me some insulin, I was told to go to the hospital this morning for tests, I get there only to be told that I've got no appointment and therefore can't be seen. I've got to go back Monday and just hope they'll see me.
> 
> I've been given a novarapid pen, then I had to go to the pharmacy to collect the needles and the bin for them. Pretty peed off atm as no-one in a professional capacity has helped me one little bit, my fiancees cousin has been type 1 for the last 6 years so were going to talk to her and hopefully get a finger prick test just to see what's going on...as I said I'm freakin out a lil bit but you guys are a massive help



That really is very poor - who sent you away, was it a receptionist?  I think you should go to A&E and explain there. How do you feel? You should have a meter and test strips and at the very least told how to use them and what the readings mean, plus some instructions on how to use the pen and what initial doses they suggest. Also, you should have some ketone test strips so that you can monitor for ketones in your blood - these are by products of burning fat for energy and can be dangerous (as in a medical emergency) if they get too high in the absence of sufficient insulin.

I don't want to alarm you, but this really shouldn't wait over the weekend.


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## Redkite (Dec 21, 2013)

Hi Adam, that is shocking it really is.    I would really advise you to go back to A&E and tell them you've been diagnosed as type 1 (which is actually a medical emergency in itself) and sent away with only short-acting insulin and NO INFORMATION!  You need a background (basal) insulin as well as the novorapid.  There is the potential for you to become seriously and dangerously unwell if you have a lack of insulin and as a result, a build-up of toxic ketones in your body.  This can be fatal, so your GP is playing fast and loose with your life here. 

If you decide to wait (which you shouldn't imo!), at least get yourself down to Boots and buy a blood glucose meter (again, this should have been issued to you).  The ones in the shop only come with 10 testing strips I think, which is only sufficient for a couple of days at the most, so you would need to buy extras over the counter until you can get your free prescriptions.

Please consider going to the hospital and INSIST on proper treatment and advice, otherwise you'll be going into the Christmas bank holidays without all the stuff you need.  I really feel for you


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## AlisonM (Dec 21, 2013)

Adam, sorry to hear of your diagnosis, but as the others have said, an still lead an active life an do anything you set your mind to, diabetes needn't hold you back. 

I'm shocked too though! I just read through your thread and I agree that you should go to A&E as soon as you can ad follow Redkite's advice. Your doctor really should have made arrangements for you to be seen at the Diabetic Clinic as a matter of urgency. Giving you an injection pen and sending you off with no support or advice just isn't good enough.


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## adam kerby jones (Dec 21, 2013)

Hey all

Thanks for the advice and support, um currently sat at the hospital awaiting a doctor to see me, when u went in to see them they got a doctor from 111 to give me a call, basically he said they have screwed up and he's got me booked in to see someone asap

Fun and games hey?


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## delb t (Dec 21, 2013)

Thank goodness your being sorted-Ive just caught up with this !


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## Redkite (Dec 21, 2013)

Glad to hear you're being seen.  Let us know how you get on


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## Northerner (Dec 21, 2013)

adam kerby jones said:


> Hey all
> 
> Thanks for the advice and support, um currently sat at the hospital awaiting a doctor to see me, when u went in to see them they got a doctor from 111 to give me a call, basically he said they have screwed up and he's got me booked in to see someone asap
> 
> Fun and games hey?



Good to hear you are getting sorted! Hope you come away much wiser and better prepared than when you went in!


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## adam kerby jones (Dec 21, 2013)

Well I'm now on the emergency ward having had bloods taken so just the waiting game now.


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## Northerner (Dec 21, 2013)

adam kerby jones said:


> Well I'm now on the emergency ward having had bloods taken so just the waiting game now.



Hope they don't take too long - shouldn't do. Personally, I felt sooo much better once things were all underway and I was getting the right amounts of insulin to get my blood sugars under control, hope you do too very soon


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## AlisonM (Dec 21, 2013)

I hope they're getting you sorted Adam. Keep us posted on your progress.


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## Redkite (Dec 21, 2013)

Phew.  Glad to hear it


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## adam kerby jones (Dec 22, 2013)

So after 24 hours of a and e I'm out, kept me on a drip to try and regulate my sugars. I've got everything needed to keep on top of it all now and I feel a tonne better. The nurses and diabetic specialist were fuming the doctors had sent me away, turns out they'd booked me in at hospital yesterday morning but hadn't told me haha.

Thanks for all the support guys, it's very much appreciated


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## Northerner (Dec 22, 2013)

adam kerby jones said:


> So after 24 hours of a and e I'm out, kept me on a drip to try and regulate my sugars. I've got everything needed to keep on top of it all now and I feel a tonne better. The nurses and diabetic specialist were fuming the doctors had sent me away, turns out they'd booked me in at hospital yesterday morning but hadn't told me haha.
> 
> Thanks for all the support guys, it's very much appreciated



Great to hear that everything got sorted out Adam  I hope that they intend to knock a few heads together over the mix-up!

Glad to hear you are feeling much better, let us know if there is anything we can help with


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## Redkite (Dec 22, 2013)

So glad you've been properly cared for (you really should make a formal complaint about that GP).  Do ask any questions you need to - there's a lot to learn at first!  And def get yourself a copy of the Ragnar Hanas book.  Other than that, hope you have a lovely Christmas


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