Diagnosed as type 1 abroad last week!!

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Jemmalouise92

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Type 1
Hello. I was diagnosed last week while on holiday in Portugal with type 1 diabetes. I have only just arrived back and because of the language barrier I am still very clueless as to what I can eat, what units mean what and, basically everything. The doctors and helplines are closed today as it is bank holiday Monday. The hospital in Portugal have given me insulin to inject 4 times a day 30 minutes before meals and the final, fourth one at 10pm (it is a slow release 24hour and the other 3 are quick insulin). Also the measurements aren't uk they're in units of 100. So ideally should be 80-100 but when at the hospital I was 337!! I'm only 24 and scared. I have thyroid disease too and they come hand in hand but didn't expect this sudden life change. Any help would be much appreciated thank you, Jemma.
 
Hello. I was diagnosed last week while on holiday in Portugal with type 1 diabetes. I have only just arrived back and because of the language barrier I am still very clueless as to what I can eat, what units mean what and, basically everything. The doctors and helplines are closed today as it is bank holiday Monday. The hospital in Portugal have given me insulin to inject 4 times a day 30 minutes before meals and the final, fourth one at 10pm (it is a slow release 24hour and the other 3 are quick insulin). Also the measurements aren't uk they're in units of 100. So ideally should be 80-100 but when at the hospital I was 337!! I'm only 24 and scared. I have thyroid disease too and they come hand in hand but didn't expect this sudden life change. Any help would be much appreciated thank you, Jemma.
Hi Jemmalouise, welcome to the forum 🙂 What a time to get diagnosed! 😱 I was actually diagnosed on this Bank Holiday Monday 8 years ago, and had put off seeking help because the surgery was shut - I ended up in A&E 😱

How did the diagnosis come about? What insulin have you been given? As you have a Portuguese meter, you can convert the readings to UK ones by dividing the numbers by 18 - that should help you understand the numbers here better. As for insulin, 'units' are just a convenient way of representing doses of insulin - they are the same here as abroad. The basic idea is that you, with the help of your doctor or nurse, work out how many units of insulin you need for a certain amount of carbohydrates in your food and/or drinks. A simple example would be a sandwich that has 50g of carbs in it - if you need one unit per 10grams of carbs (your personal 'ratio' might be different), then you would inject 5 units of the fast-acting. This is known as 'carb counting' and means you can match the dose of insulin to the food you want to eat ( have a look at this link for more information: https://www.diabetes.org.uk/Guide-to-diabetes/Managing-your-diabetes/Carb-counting/ . You only usually need fast-acting insulin when you eat carbohydrates, but your doctor or nurse will be able to explain more fully. What have you been told to eat and inject? I would try to eat normally until you can speak to the doctor. Have you been testing your blood since you were diagnosed? What numbers are you getting before you eat? Keep something sweet handy and test if you feel odd or funny (shaky, sweating, light-headed). If your numbers are below 72 when you feel like this, have a sweet or a sugary drink (half a can of full sugar coke or a couple of jelly babies) and this will raise your blood sugar levels back above 72.

Do get in touch with your doctor for an emergency appointment tomorrow so you can start to get things sorted out. Unless he has a particular interest in diabetes it is most likely that he will refer you to an endocrinologist (diabetes consultant) who should also be able to help with your thyroid problems. The consultant should also have DSNs (Diabetes Specialist Nurses) in his/her clinic who are usually a brilliant help with any problems or questions you might have 🙂 Your GP should be able to sort out a repeat prescription for all the items you need prescribing - I would recommend asking for a UK meter and plenty of test strips.

There is a lot to learn very quickly, but you will get plenty of support so never be afraid to ask questions if something is confusing or worrying you. I would highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas which I am sure you will find immensely helpful 🙂

Let us know if you have any more questions - I'm sure you must have lots! Try not to worry - it is a serious condition, but it can be managed well and the treatments and knowledge are the best they have ever been, so you will be well looked after and do just fine, I am sure 🙂
 
Thank you so much that was really comforting to read.

I am not sure what insulin I am using if I am honest as it is all in Portuguese which is also another worry. The doctors have referred me to the hospital for further tests but, that isn't for another 3 weeks!

Now I am injecting I am usually between 140-200. It seems to be staying between those numbers and sometimes 200+. I am clueless as to how to change the measurements dependent on my carbs and I'm meant to be going for pizza later :(

I am sure it will all be second nature soon enough but I just want to understand it more and know what to do. My problem is that I don't get any symptoms! I was only diagnosed because my doctors was doing my routine 3 monthly thyroid blood test and decided to randomly check my sugars. Then my first full day on holiday I got a call saying to go straight to hospital as I could slip into a coma at any time because my levels were dangerously high (337 when I got to hospital!)

I'm also getting nervous because the blood checker they gave me is running out of test pads (I don't know what the technical terms are, sorry!) also I might have already said this part in my last comment?!

Thanks again for your reply 🙂 really appreciated
 
Thank you so much that was really comforting to read.

I am not sure what insulin I am using if I am honest as it is all in Portuguese which is also another worry. The doctors have referred me to the hospital for further tests but, that isn't for another 3 weeks!

Now I am injecting I am usually between 140-200. It seems to be staying between those numbers and sometimes 200+. I am clueless as to how to change the measurements dependent on my carbs and I'm meant to be going for pizza later :(

I am sure it will all be second nature soon enough but I just want to understand it more and know what to do. My problem is that I don't get any symptoms! I was only diagnosed because my doctors was doing my routine 3 monthly thyroid blood test and decided to randomly check my sugars. Then my first full day on holiday I got a call saying to go straight to hospital as I could slip into a coma at any time because my levels were dangerously high (337 when I got to hospital!)

I'm also getting nervous because the blood checker they gave me is running out of test pads (I don't know what the technical terms are, sorry!) also I might have already said this part in my last comment?!

Thanks again for your reply 🙂 really appreciated

Don't worry about those levels, they are neither too high nor too low for now (between 90 and 140 would be ideal, but not a worry at this stage). Just to give you an idea, my levels were equivalent to 666 in those measurements when I was diagnosed, and I was still walking around (just!) 😱 See your GP tomorrow and get your prescription items sorted out - your GP should be able to work out what the equivalent items should be over here - you certainly can't wait 3 weeks if you are running out of stuff, and really ought to have a Specialist nurse on hand that you can talk to since you are newly-diagnosed - don't leave your GP surgery until you are happy that you have the support you need readily available! 🙂

I would say, don't eat too much pizza - unfortunately it's not great for people on insulin until you know a bit more about what you are doing as it is very heavy in carbohydrates - I'd suggest going for something lighter on the menu, or only eat a moderate portion. Probably best not to drink any alcohol either as that can also be something that you need to know a bit more about before having.
 
Welcome to the forum, Jemmalouise92.
Your absolute priority must be to get a GP appointment, so that you can be referred to your local hospital diabetes clinic, which will open up the possibility of education courses and contact with specialist doctors, nurses & dieticians, plus an NHS prescription charge exemption card, and set up repeat precriptions for insulin, blood glucose test strips etc. It will be much easier if you have a meter that measures in mmol/l, as these are the units used in UK - your GP or diabetes specialist nurse may give you one. If you already have an endocrinologist (due to thyroid issues), they may be able to refer you sideways, but usually referrals have to go through GP. Take along all packets of insulin and strips that you have been given. Names of insulin are usually similar between European languages, but it's easier to read than rely on confused pronounciation.
If you have a driving licence, you need to inform DVLA, and getting a restricted (3 years) licence will be much more straightforward if you can name a GP who knows your situation or a diabetes specialist at hospital. You can drive on existing licence until new one is issued, but you should make yourself familiar with guidance about when to test and what levels should be.
What are you doing generally? Work / study / hobbies etc? We can probably help with suggestions about life, the universe and everything with type 1 diabetes.
 
Can't really advise on the insulin side of things, but just wanted to say hi. Hopefully you'll be on the right track soon.
 
Hi jemmalouise92
Crikey, that must have been scary, it's bad enough someone hitting you with the type 1 diagnosis but in a foreign country to boot...blimey 😱

I think your first step as Copepod and Northerner have said is your GP. Ring up and tell them it's an emergency (you need an appointment today), take everything you've been given with you and get them to sort out your prescription pronto. You need to know you've got test strips, something to test ketones with, needles, insulin and a meter you can use with the mmol/l readings (lower figures), sharps bin etc. Test strips are particularly important at this stage and you want at least 4 boxes a month in my opinion because the first few months can be tricky whilst you learn how to adjust. You'll be fine, you'll adjust, it just takes a bit of effort. Getting supplies sorted can be a bit stressful in my experience so get that sorted first and then you can concentrate on getting a handle on the day to day routine. Oh and don't forget that exemption card, fill out the form and get the GP to sign it there and then. I know the last thing you want as soon as you're free from hospital is more medical folk (I remember it well) but it's best to get them out of the way 🙂
 
Regarding the Exemption Card - it will be backdated a month from when you apply, so as soon as you apply you will be covered and can sign box 'E'on the prescription form 🙂 Not sure what insulin you are on, therefore what pens you can use - is there a name on the ones you were given in Portugal? When I left hospital I realised I'd only been given three needles, so I had to sort things out pretty quickly as well! 😱

Good luck - let us know how you get on 🙂
 
Hi and welcome to the forum - I have no clue on insulin so will just sit quiet and listen 😉:D
 
Hiya! I actually already have an exemption card because I have thyroid disease too! And they gave us a box of 100 needles so I'm ok for those it's just the test strips to put blood on and the machine they've given me is a same use needle which I'm not happy about!! X
Regarding the Exemption Card - it will be backdated a month from when you apply, so as soon as you apply you will be covered and can sign box 'E'on the prescription form 🙂 Not sure what insulin you are on, therefore what pens you can use - is there a name on the ones you were given in Portugal? When I left hospital I realised I'd only been given three needles, so I had to sort things out pretty quickly as well! 😱

Good luck - let us know how you get on 🙂
iyai
 
Hi! Thanks for your message 🙂 I went to an out of hours doctor last night at midnight and he was nice enough but they all just keep telling me same thing - "no sugar, keep doing your insulin" I don't even know if the measurements Portugal gave me are correct?! And the blood sugar tester they gave me is a same use needle! I also don't know at what level if I'm low should I not inject before I eat etc there's just so much I need to know and they've booked me a hospital appointment for 3 weeks which is causing me stress - I want it now!! Also I just don't know what to do about my job I was thinking of leaving and now I want to even more so but it's awkward as my manager is being so understanding and nice. I just don't feel like I can handle life right now :(

Hi jemmalouise92
Crikey, that must have been scary, it's bad enough someone hitting you with the type 1 diagnosis but in a foreign country to boot...blimey 😱

I think your first step as Copepod and Northerner have said is your GP. Ring up and tell them it's an emergency (you need an appointment today), take everything you've been given with you and get them to sort out your prescription pronto. You need to know you've got test strips, something to test ketones with, needles, insulin and a meter you can use with the mmol/l readings (lower figures), sharps bin etc. Test strips are particularly important at this stage and you want at least 4 boxes a month in my opinion because the first few months can be tricky whilst you learn how to adjust. You'll be fine, you'll adjust, it just takes a bit of effort. Getting supplies sorted can be a bit stressful in my experience so get that sorted first and then you can concentrate on getting a handle on the day to day routine. Oh and don't forget that exemption card, fill out the form and get the GP to sign it there and then. I know the last thing you want as soon as you're free from hospital is more medical folk (I remember it well) but it's best to get them out of the way 🙂
ay
 
Hi! Thanks for your message 🙂 I went to an out of hours doctor last night at midnight and he was nice enough but they all just keep telling me same thing - "no sugar, keep doing your insulin" I don't even know if the measurements Portugal gave me are correct?! And the blood sugar tester they gave me is a same use needle! I also don't know at what level if I'm low should I not inject before I eat etc there's just so much I need to know and they've booked me a hospital appointment for 3 weeks which is causing me stress - I want it now!! Also I just don't know what to do about my job I was thinking of leaving and now I want to even more so but it's awkward as my manager is being so understanding and nice. I just don't feel like I can handle life right now :(
Hi Jemma, it's no wonder you are feeling overwhelmed by everything, it's a hard thing to deal with at the best of times, but when you get your diagnosis as you have done there are so many extra stresses you could certainly do without :(

You need a bit of breathing space, so you need to remove the concerns one by one. First priority is getting an emergency appoinment with your own doctor and asking for an immediate referral to a consultant-led clinic - you absolutely need someone who knows what they are talking about to explain things properly to you and be on hand via phone or email, or appointment, to discuss your concerns, problems and potential changes to your medication. Do this first of all, do it now! 🙂 You can't wait for 3 weeks, it has to be sorted before anything else. The tests they do in 3 weeks are irrelevant to your current situation - you have been diagnosed, you are injecting insulin, and you need someone to answer your questions. We are not allowed to give out medical advice, so whilst we can answer some questions, there are others (like how and when to take your insulin) that need a healthcare professional's input - and they must be specially trained to do this, not surgery staff.

You should also ask your GP to prescribe you some test strips and, if possible, give you a meter (although you should be able to obtain a meter from the diabetes clinic). What is the name of the meter you have been given? You may be able to get strips for that one until you can get a new one with UK numbers.

I know you've just been on holiday, but are you able to take a few days off from work? You can't be worrying about your job when you have this to deal with.

Please get in touch with your GP surgery and get an appointment - it ought to be possible over the phone, I would have thought, he/she should be able to refer you as an emergency and tell you where you need to go.
 
I just don't feel like I can handle life right now :(

I think we've all been there Jemma but hang on in and things will sort themselves out, I promise. Keep in touch on here. The forum is a very knowledgeable bunch of people and someone will be able to answer any of your queries. Good luck with your GP appointment. x
 
You will get there. Good luck with the Dr. First week or two can involve a lot of running around chasing up supplies.
 
Hi! Thanks for your message 🙂 I went to an out of hours doctor last night at midnight and he was nice enough but they all just keep telling me same thing - "no sugar, keep doing your insulin" I don't even know if the measurements Portugal gave me are correct?! And the blood sugar tester they gave me is a same use needle! I also don't know at what level if I'm low should I not inject before I eat etc there's just so much I need to know and they've booked me a hospital appointment for 3 weeks which is causing me stress - I want it now!! Also I just don't know what to do about my job I was thinking of leaving and now I want to even more so but it's awkward as my manager is being so understanding and nice. I just don't feel like I can handle life right now :(


ay
You should contact your GP as soon as possible, get an appointment with them, and get an urgent referral to diabetes clinic. As you are already being treated for thyroid issues, do you have a phone number for hospital clinic? Thyroid problems and diabetes are both endocrinology issues, so there might be a short cut.
I wouldn't do anything rash like giving up your job, but taking some breathing space, whether complete time off or asking for shorter hours or fewer days per week might be a good idea. It sounds like your manager would be open to that sort of suggestion. Sometimes, the structure of a job actually helps with diabetes, and it's easier to find a new job when you are employed than when unemployed.
Depending on the model of blood glucose meter, it might be possible to change the units from mg/dl which is used in mainland Europe to mmol/l which are used in UK.
 
The lancets (that's what finger bodger 'needles' are called) will be one of the numerous items that immediately gets added onto your 'repeat prescriptions' list at your GP surgery. As a full blown very new Type 1 - you need at least 200 on repeat - 150 per month is the absolute minimum you will need - even when you are totally settled and completely blasé about it all. (eg for me, after 44 years LOL) because at absolutely ANY time during our lives - there are always times when we need to test more than 'the absolute minimum' number of times. It is the nature of being able to co-exist and 'act normal' .


All new meters usually come with only 10 test strips - not the tubs of 23 or 50 that are the norm. So these must also be added to your repeats PDQ.


At most GP surgeries the only person who can actually add things, is one of the doctors. Occasionally some 'Nurse prescribers' can - but often it is outside their remit - so to save time it's far quicker to see the doc him/herself.


Finally - if you know which hospital you have been referred to - give them a ring and ask to speak to the Diabetes clinic, when you get through there, ask to speak to one of the Specialist Nurses on Duty. Explain to whoever it is that you have been referred but because those diagnosing you were not native English speakers that you have been left a LOT at sixes and sevens and you just need to make sure that the advice you have had and what you are now doing are actually correct and up to date as you 'are a bit scared' * just in case they aren't.


* even if you aren't LOL If you happen to be terrified though - then SAY so !
 
Hi! Thanks for your message 🙂 I went to an out of hours doctor last night at midnight and he was nice enough but they all just keep telling me same thing - "no sugar, keep doing your insulin" I don't even know if the measurements Portugal gave me are correct?! And the blood sugar tester they gave me is a same use needle! I also don't know at what level if I'm low should I not inject before I eat etc there's just so much I need to know and they've booked me a hospital appointment for 3 weeks which is causing me stress - I want it now!! Also I just don't know what to do about my job I was thinking of leaving and now I want to even more so but it's awkward as my manager is being so understanding and nice. I just don't feel like I can handle life right now :(


ay

As the others have said, take one step at a time, it's an incredibly overwhelming time and it makes you feel massively out of control. You have 20 plus years of running on automatic pancreas wise and it takes a bit of time to adjust. The GP needs to give you supplies so get that sorted first with an appointment preferably during the day when they have time to talk you through the absolute basics. I was in much the same position 2 years ago when packed out of hospital with ten test strips one insulin pen and a couple of needles, so I know it's a horrible feeling, but you've got this, you just have to take baby steps. If you're feeling vulnerable (I certainly did) ask a friend or a family member to go along with you for moral support. Don't try and make decisions about work just yet, it's too overwhelming when you're dealing with such a massive change. The other thing nobody will have told you most likely is when blood sugar is swinging quite wildly (as it most likely is) your emotions go with it, which also makes it much harder to cope in general, so you will start to feel much more level when the blood sugar is under control.

Don't be afraid to make a "nuisance" of yourself with the GP and or the consultant. The wheels of the NHS move quite slowly and sometimes they can be quite clueless about how it feels (I'm being very polite because we're in public!) so tell them very clearly that you need immediate help, and don't accept "don't eat sugar and keep taking the insulin" as an answer. This is where the friend or family member can be helpful, especially if you can pull out a stroppy friend from your bunch, they can fight for you when you don't have the energy or feel like the fight has left you. Write down the questions you need answered, and then take your notebook and write down the answers.

On a practical note what make of meter did they give you, if it's one of the major ones one of us might have it and be able to work out if it can be changed to uk measures then at least we can understand the numbers 🙂
 
If we only want to understand the number - divide by 18 ! Europe uses the same as the US.

So if a BG is 100 it = 5.5, 200 is 11.00, 139 is 7.7 and anything below 72 (4.0) is Hypoland!
 
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