Newly Diagnosed

[Reeceeey]

Heey guys,

I have just been diagnosed with diabetes however the doctors are unsure which type I am yet.. I was just wondering how long it took to gather their full diagnosis? The nurse has told me it could take up to 3 months and I just find that a bit long or was that normal for everyone else's full diagnosis?

It has been a massive change in my lifestyle and has turned my life upside down at the moment, I've had about a month off college and work because my sugar levels haven't been great but I have started to ease myself back into college and I'll be starting back at work next week but I am so nervous to start and get back to my normal life but the amount of support I have been given has helped massively.

If anyone as any advice for me it would be greatly appreciated

 

[Northerner]

Hi Reece-Danielle, welcome to the forum 🙂 I would think that, at your age, it would be highly unlikely for you to be anything other than Type 1. Sometimes, people can have a slow-onset version of Type 1 which means that they don't show the extreme symptoms of Type 1, but do show symptoms to a lesser degree. They do certain tests to determine this. Have you been put on any medication? How did you come to be diagnosed?

 

[Reeceeey]

Hi,

It all started because I collapsed one morning and went very pale so my mum rushed me straight to hospital where I had a sugar level of 20 and the nurse didn't understand why as I wasn't a diabetic then. I was then admitted to hospital for a week while the doctors run test after test and put me on insulin to bring my levels down.

I left the hospital with insulin and metformin as they are still trying to determined what type I am.

 

[Northerner]

Sorry to hear this, it must have been very scary :0 Have you been having symptoms lately, like needing the loo a lot and feeling tired? 20 is quite high - 'normal' is between 3.3 and 6.0 for people without diabetes (although it can go a bit higher). I was 38 when I was diagnosed 😱 What insulin have you been given? Do you mind me asking if you are overweight at all? If so, I would have thought that would be the only reason why they have put you on metformin, which is principally a Type 2 medication.

Don't be scared! It's a huge shock when you are first diagnosed and there is a lot to take in, but be guided by your healthcare team and please ask any questions you may have here and we will be more than happy to help 🙂 Do you have a DSN (Diabetes Specialist Nurse) keeping in regular contact with you?

 

[Reeceeey]

Yeah, it was massively scary, I didn't know what to think, what to do it was just so overwhelming as I was being given all this information and didn't know what to do with it. Recently I have been very tired and then moody from the tiredness which my family aren't to happy about :') but yes, before being diagnosed I was on the loo like very 10-20 minutes but it has changed but I think its still a little much than what a normal person would be going to the loo.

When I left the hospital I was put on Humalog Mix 50 but they have changed the insulin to Levemir but no I'm not overweight, that what was also a reason as I was in and out of GP appointments, I had lost about 4 stone in about 4-5 months and I'm now at an average weight I believe. They told me they've only put me on the metformin was to see if my pancreas would start making its own insulin but I was confused as to why I was put on both but they said it was all for them to see what type I have got and yes I do have a DSN and I have to ring to let them at least very week

 

[Mark T]

Welcome to the forum Reeceeey 🙂

There are some blood tests they can do to detect anti-immune antibodies - if they haven't already taken the blood for those it's worth encouraging them to do so. That will tell you much more information on what type you are.

Not sure why they think Metformin will encourage your pancreas to produce insulin - that's not what it does. Broadly it increases the effectiveness of existing insulin and lowers the amount of glucose that your liver drips out. The only beneficial to insulin productions is by way of your average levels dropping.

 

[AlisonM]

Welcome Reeceeey. I'm confused about the Metformin thing too. As the others have said, there are tests that can be done to determine which type of diabetes you have. At your age and weight it's most likely T1 or possible T1.5/LADA/slow onset T1 (like me). A GAD and a C-peptide test would clear that up pronto and non of this three months waiting nonsense. At least you are on insulin of some sort which should carry you over till they make up their minds. Perhaps you could ask next time you speak to the DSN whether these tests have been done (and if not, why not)?

 

[Northerner]

Yeah, it was massively scary, I didn't know what to think, what to do it was just so overwhelming as I was being given all this information and didn't know what to do with it. Recently I have been very tired and then moody from the tiredness which my family aren't to happy about :') but yes, before being diagnosed I was on the loo like very 10-20 minutes but it has changed but I think its still a little much than what a normal person would be going to the loo.

When I left the hospital I was put on Humalog Mix 50 but they have changed the insulin to Levemir but no I'm not overweight, that what was also a reason as I was in and out of GP appointments, I had lost about 4 stone in about 4-5 months and I'm now at an average weight I believe. They told me they've only put me on the metformin was to see if my pancreas would start making its own insulin but I was confused as to why I was put on both but they said it was all for them to see what type I have got and yes I do have a DSN and I have to ring to let them at least very week

All that weight loss is a sign that the insulin being produced by your pancreas was declining - the same thing happened to me, and it can be confusing because most people are happy to lose a bit of weight so don't really question it. As you are on levemir, that indicates that you are still producing some insulin, but not enough. Are you measuring your blood sugar levels at home now? What sort of levels are you getting in the morning?

It's a steep learning curve, but once you have got your head round it, it's something that can be controlled well and it doesn't need to take over your life or stop you doing whatever you want to do - people with Type 1 (which I'm pretty sure is what you have) can get right to the top of their chosen professions or sports (Home Secretary Theresa May is Type 1), Nick Jonas is Type 1. All it needs is a bit of extra planning, care and understanding and you will be fine 🙂 I'd really recommend getting hold of a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas - it covers absolutely everything to do with Type 1 and is written in a very positive way. Keep us up to date with what is happening, and let us know if there is anything you are unsure of 🙂

Diabetes UK have a section for teenagers that you might want to take a look at: https://www.diabetes.org.uk/Guide-to-diabetes/Teens/

 

[Reeceeey]

Welcome to the forum Reeceeey 🙂

There are some blood tests they can do to detect anti-immune antibodies - if they haven't already taken the blood for those it's worth encouraging them to do so. That will tell you much more information on what type you are.

Not sure why they think Metformin will encourage your pancreas to produce insulin - that's not what it does. Broadly it increases the effectiveness of existing insulin and lowers the amount of glucose that your liver drips out. The only beneficial to insulin productions is by way of your average levels dropping.

They did blood tests while I was in hospital and last week after I had a follow up with the DSN and I'm just waiting for those results which I hope I'll get when I have my doctors appointment but I'll mention to them to see if they have done those ones.

They've asked me to continue on both but I don't know why I'm being put on both but they seem to think it could be helping.

 

[Reeceeey]

Welcome Reeceeey. I'm confused about the Metformin thing too. As the others have said, there are tests that can be done to determine which type of diabetes you have. At your age and weight it's most likely T1 or possible T1.5/LADA/slow onset T1 (like me). A GAD and a C-peptide test would clear that up pronto and non of this three months waiting nonsense. At least you are on insulin of some sort which should carry you over till they make up their minds. Perhaps you could ask next time you speak to the DSN whether these tests have been done (and if not, why not)?

I will mention this to them, as I don't see how or why I should be waiting 3 months to find out because with not knowing what type its slightly put my life on hold as I don't know what information to look at or what would be better to treat things.

 

[Reeceeey]

All that weight loss is a sign that the insulin being produced by your pancreas was declining - the same thing happened to me, and it can be confusing because most people are happy to lose a bit of weight so don't really question it. As you are on levemir, that indicates that you are still producing some insulin, but not enough. Are you measuring your blood sugar levels at home now? What sort of levels are you getting in the morning?

It's a steep learning curve, but once you have got your head round it, it's something that can be controlled well and it doesn't need to take over your life or stop you doing whatever you want to do - people with Type 1 (which I'm pretty sure is what you have) can get right to the top of their chosen professions or sports (Home Secretary Theresa May is Type 1), Nick Jonas is Type 1. All it needs is a bit of extra planning, care and understanding and you will be fine 🙂 I'd really recommend getting hold of a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas - it covers absolutely everything to do with Type 1 and is written in a very positive way. Keep us up to date with what is happening, and let us know if there is anything you are unsure of 🙂

Diabetes UK have a section for teenagers that you might want to take a look at: https://www.diabetes.org.uk/Guide-to-diabetes/Teens/

Yeah, I was happy with it but my family were really worried as I was struggling to lose weight and then bang it started to fall off me. They only changed me to Levemir because I was having a few low hypos where I would go right down to 2.9 however since changing to Levemir I've been having high hypos which go up to 13 so its like I can't win at the moment. Yes I am measuring my blood sugar at home and in the morning my levels are anywhere between 8.9 - 6.8 but no lower than that.

I've come to realise that this is going to be a long and possibly hard journey to beginning with as I'm still getting used to everything and trying to gather all the information I can at the moment and its hard not knowing what type as I just want to start moving forward and learning to deal with things.

 

[Northerner]

I would work on the theory that you are Type 1, because that's almost certainly what you are, but a slow-onset Type 1 (sometimes called Type 1.5, or LADA - Latent Autoimmune Diabetes in Adulthood). In fact, many people in your position are misdiagnosed as Type 2 and can then have months or years of problems before they finally realise they got it wrong, so it's great that they are straight on to the possibility of Type 1 and giving you the right medication (apart from the metformin, which is just a precaution really). There's nothing to suggest you are Type 2. As we get older, Type 1 can take longer to fully materialise - in very young children it can happen in a number of days, but in my case (I was 49!) it took about 18 months. Given that you have been losing weight for several months without explanation that means that it started for you around that time, but it was only when you collapsed that it had reached a point where it came to everyone's attention and you were tested. With me, I caught a stomach virus that made me very poorly - when you don't have a fully working pancreas it can make the effects of illness much more severe and I ended up in A&E with something callled DKA (Diabetic Ketoacidosis, caused by very high blood sugar levels and lack of insulin).

Don't worry too much about your numbers at the moment, it takes time to work out what doses of insulin are closest to what you require and they start off cautiously so you don't go too low. They took you off the mixed insulin because it is a mix of 'slow' and 'fast' acting insulin - the 'fast' part was causing the low blood sugars, so they put you on levemir which is just a 'slow' insulin. The fact you had those lows shows you are still producing insulin, but not enough to cover all your needs. What happens is this: all the time, day and night, your liver trickles out glucose into your blood so that you have energy for your heart, lungs, brain etc. when you aren't eating. You can only use this energy though if you have enough insulin - the levemir is supplying this need. The other times you need insulin is when you eat anything containing carbohydrates - this was what the 'fast' insulin was for, so you could use the energy from food - but currently your own body can provide insulin for this. That's basically it, hope it helps you to understand what's happening.

It's a shock to the system, and quite difficult when you are in what is sometimes called a 'honeymoon' stage, where you have diabetes, but can't be sure how much insulin you are producing, or for how long. It varies a lot from person to person as well, so it's hard to give you straight and simple answers, unfortunately.

 

[trophywench]

Hiya

Well to be honest with you - I truly think the hospital are making it MORE difficult for you by messing you about medication-wise.

Much easier and better for you to treat you as a 'normal' Type 1 and put you on a decent insulin regime in the first place - if you were T2 it would soon be apparent. Most classic T1s have what they call a 'honeymoon' period (but none of them would ever want the nightmare that the honeymoon period is, as their honeymoon!) and it's the time between diagnosis (usually at this stage your own insulin production is only in decline it hasn't completely stopped yet) and their pancreas finally stopping producing it at all. (Well it often does actually continue to produce a teeny dribble for the rest of your life - but its a useless amount and nowhere near enough for you to stay alive)

So that's what I think - you are T1, you are in your honeymoon period and the sooner they agree with me, the sooner you can get on with your life!

BUT - I am NOT medically qualified in any way shape or form - I'm just a person with diabetes as my Specialist Subject LOL

Hope they sort you out soon, and good luck!

Oh - PS - if one of the tests was a 'C reactive Protein' test - that is the one that tells them whether your pancreas is producing insulin or not - and it DOES take weeks and weeks - I don't know why, what they have to do (apart from send it away somewhere else, eg Exeter, I know they do or used to do that test, very few do so it must be very specialist) and it's expensive. The other tests, HBA1c, GAD65 Antibodies, Kidneys, Liver etc (they usually test for everything, just to make sure the diabetes hasn't already got to other organs) if they are being done at the same hospital would be done by the next day probably in most circumstances.

PS I was typing at the same time as Northie!

 

[Reeceeey]

I would work on the theory that you are Type 1, because that's almost certainly what you are, but a slow-onset Type 1 (sometimes called Type 1.5, or LADA - Latent Autoimmune Diabetes in Adulthood). In fact, many people in your position are misdiagnosed as Type 2 and can then have months or years of problems before they finally realise they got it wrong, so it's great that they are straight on to the possibility of Type 1 and giving you the right medication (apart from the metformin, which is just a precaution really). There's nothing to suggest you are Type 2. As we get older, Type 1 can take longer to fully materialise - in very young children it can happen in a number of days, but in my case (I was 49!) it took about 18 months. Given that you have been losing weight for several months without explanation that means that it started for you around that time, but it was only when you collapsed that it had reached a point where it came to everyone's attention and you were tested. With me, I caught a stomach virus that made me very poorly - when you don't have a fully working pancreas it can make the effects of illness much more severe and I ended up in A&E with something callled DKA (Diabetic Ketoacidosis, caused by very high blood sugar levels and lack of insulin).

Don't worry too much about your numbers at the moment, it takes time to work out what doses of insulin are closest to what you require and they start off cautiously so you don't go too low. They took you off the mixed insulin because it is a mix of 'slow' and 'fast' acting insulin - the 'fast' part was causing the low blood sugars, so they put you on levemir which is just a 'slow' insulin. The fact you had those lows shows you are still producing insulin, but not enough to cover all your needs. What happens is this: all the time, day and night, your liver trickles out glucose into your blood so that you have energy for your heart, lungs, brain etc. when you aren't eating. You can only use this energy though if you have enough insulin - the levemir is supplying this need. The other times you need insulin is when you eat anything containing carbohydrates - this was what the 'fast' insulin was for, so you could use the energy from food - but currently your own body can provide insulin for this. That's basically it, hope it helps you to understand what's happening.

It's a shock to the system, and quite difficult when you are in what is sometimes called a 'honeymoon' stage, where you have diabetes, but can't be sure how much insulin you are producing, or for how long. It varies a lot from person to person as well, so it's hard to give you straight and simple answers, unfortunately.

Thank you, talking to everyone has helped to understand and slightly come to terms with everything as I'm feeling a little overwhelmed at the moment and don't know who to talk to and how to get across how I'm feeling as I don't even know that.

Hopefully I shall find out what type I am soon as I really want to start living with all the information my poor little brain can contain about how my new life will be.

Thank you.

 

[Reeceeey]

Hiya

Well to be honest with you - I truly think the hospital are making it MORE difficult for you by messing you about medication-wise.

Much easier and better for you to treat you as a 'normal' Type 1 and put you on a decent insulin regime in the first place - if you were T2 it would soon be apparent. Most classic T1s have what they call a 'honeymoon' period (but none of them would ever want the nightmare that the honeymoon period is, as their honeymoon!) and it's the time between diagnosis (usually at this stage your own insulin production is only in decline it hasn't completely stopped yet) and their pancreas finally stopping producing it at all. (Well it often does actually continue to produce a teeny dribble for the rest of your life - but its a useless amount and nowhere near enough for you to stay alive)

So that's what I think - you are T1, you are in your honeymoon period and the sooner they agree with me, the sooner you can get on with your life!

BUT - I am NOT medically qualified in any way shape or form - I'm just a person with diabetes as my Specialist Subject LOL

Hope they sort you out soon, and good luck!

Oh - PS - if one of the tests was a 'C reactive Protein' test - that is the one that tells them whether your pancreas is producing insulin or not - and it DOES take weeks and weeks - I don't know why, what they have to do (apart from send it away somewhere else, eg Exeter, I know they do or used to do that test, very few do so it must be very specialist) and it's expensive. The other tests, HBA1c, GAD65 Antibodies, Kidneys, Liver etc (they usually test for everything, just to make sure the diabetes hasn't already got to other organs) if they are being done at the same hospital would be done by the next day probably in most circumstances.

PS I was typing at the same time as Northie!

I think it might help me being on a one regime, as where my body had got used to the one insulin from being out of hospital my body and sugar levels was getting so used to everything and I was starting to feel better but still wasn't 100% as I was having so many lows but since they've changed my insulin I feel like I'm starting again and my body doesn't like the change at the moment which is really putting a struggle on my life as I'm starting back at college and then starting back at work next week and at the moment I feel like I'm drowning with a little stress.

However a massive thank you for everything everyone has said and helped with.

 

[Redkite]

Hi, sorry to hear this. I'm shocked at the hospital's pussyfooting around - you presented with classic symptoms of type 1 - frequent trips to the toilet, weight loss, and a very high blood glucose level. The nurse that couldn't understand it because you "weren't diabetic" at that point needs retraining - you very clearly WERE diabetic, and these symptoms should have resulted in a diagnosis. At least you've been given insulin - hopefully your clinic team will get their finger out and diagnose you properly. Anyway, welcome to the forum and do please get yourself the Ragnar Hanas book mentioned above.

 

[Reeceeey]

Hi, sorry to hear this. I'm shocked at the hospital's pussyfooting around - you presented with classic symptoms of type 1 - frequent trips to the toilet, weight loss, and a very high blood glucose level. The nurse that couldn't understand it because you "weren't diabetic" at that point needs retraining - you very clearly WERE diabetic, and these symptoms should have resulted in a diagnosis. At least you've been given insulin - hopefully your clinic team will get their finger out and diagnose you properly. Anyway, welcome to the forum and do please get yourself the Ragnar Hanas book mentioned above.

That's what my mum can't understand as I've been in and out of doctors appointments for the past year or so and they didn't find anything at my GP but while I was in hospital they told me that for at least the past 3 months my sugar levels have been sky high and my GP had done a blood test glucose test on me but "found nothing" so my family wasn't too happy with that.

Hopefully I will find out soon as I just want to start living life with the correct medication and correct help.

 

[Matt Cycle]

Caveat: I am not a doctor 🙂 but I agree with what the others say in that from what you describe it would be more likely to be Type 1. The hospital must have done an HbA1c test (glycated haemoglobin) that gives an idea of your blood sugar levels for the past three months when they said it was sky high. So it seems strange the GP didn't find anything with the presumably finger prick blood glucose test.

Like you I too was 18 at diagnosis but went from 'normal' to having an unquenchable thirst, running to the toilet, lost weight and feeling like s**t to then being in hospital with DKA within a week.

Hope you get it sorted soon and after a bit you'll soon get the hang of it. 🙂

 

[Reeceeey]

Caveat: I am not a doctor 🙂 but I agree with what the others say in that from what you describe it would be more likely to be Type 1. The hospital must have done an HbA1c test (glycated haemoglobin) that gives an idea of your blood sugar levels for the past three months when they said it was sky high. So it seems strange the GP didn't find anything with the presumably finger prick blood glucose test.

Like you I too was 18 at diagnosis but went from 'normal' to having an unquenchable thirst, running to the toilet, lost weight and feeling like s**t to then being in hospital with DKA within a week.

Hope you get it sorted soon and after a bit you'll soon get the hang of it. 🙂

Yeah, the hospital did loads of tests and was taking blood from me every morning for some new test but everything you had was basically what I was experiencing.
I'm hoping it gets sorted soon-ish as I want to start living my life and have/get all the information correct.

 

[Reeceeey]

Heya guys,

Update; I've seen one of the diabetic doctors and she said that I am Type 1 but she wants to confirm everything via my blood test results that wasn't on the system when I was at my appointment. However she is still saying I am a Type 1 from the blood tests they did in the hospital while I stayed.