First Appointment without official diagnosis?

[NixiHB]

Hi,
I have been 'diagnosed' with diabetes after two high blood sugar tests... The doc says she 'thinks' I 'might' be type 1 as I'm not overweight. I have been referred to a hot clinic so I can be seen straight away as she is that worried about me. Now I'm TOTALLY freaked out, have my appointment on Monday with diabetes nurse and have no idea what to expect as they haven't even tested to see what type of diabetes - if any - I have!
Any one else been in the same boat?

 

[Juicyj]

Hello and welcome @NixiHB

Do you have the results of your tests ? Also what triggered these tests, were you feeling unwell in any way ?

Don't be freaked out, your on the radar, the worrying scenario is not getting picked up on this, so try to relax, your appointment will fill in the blanks hopefully so try to remain calm for this as you will receive alot of information then, take a friend/relative if you can and write notes down too which will help you understand what you're being told and need to know.

 

[NixiHB]

Hello and welcome @NixiHB

Do you have the results of your tests ? Also what triggered these tests, were you feeling unwell in any way ?

Don't be freaked out, your on the radar, the worrying scenario is not getting picked up on this, so try to relax, your appointment will fill in the blanks hopefully so try to remain calm for this as you will receive alot of information then, take a friend/relative if you can and write notes down too which will help you understand what you're being told and need to know.

Thanks so much for your quick response. I haven't been given the actual test results - I have been feeling ill since I quit smoking three months ago and after four visits to different doctors one finally took me seriously and tested for seven separate things to figure it out. She then rang back a week later and said one test has come back incredibly raised blood sugar so had to go in for another test. They rang yesterday to say this was also very raised, which indicates diabetes. But still no idea of what type I have - will more tests be taken on my first appointment to figure this out? Thanks again

 

[xfieldok]

When you go to the GP, ask for a printout of your last few results. Ask what tests you have had or are going to have. Don't panic. T1 and T2 are treated differently and so any advice on this forum will depend on your type.

T2 are not generally given a meter by the NHS unless they are on insulin or meds that can cause hypos. If you need to self fund a meter, come back here for information.

Don't panic, you will get loads of help and support on this forum.

 

[NixiHB]

When you go to the GP, ask for a printout of your last few results. Ask what tests you have had or are going to have. Don't panic. T1 and T2 are treated differently and so any advice on this forum will depend on your type.

T2 are not generally given a meter by the NHS unless they are on insulin or meds that can cause hypos. If you need to self fund a meter, come back here for information.

Don't panic, you will get loads of help and support on this forum.

Thank you for the advice. I'm just finding it very strange that I have got an appointment at the diabetes centre before they even know what I have!

 

[JoKalsbeek]

Thank you for the advice. I'm just finding it very strange that I have got an appointment at the diabetes centre before they even know what I have!

Hi, and welcome,

I'm with the others: Don't panic, you're in the mill now, you'll be okay. As for why you're being sent to the clinic; with raised levels, in two consecutive tests, they are sure you're a diabetic. The clinic is being called in to find out what type. There's all sorts, not just 1 and 2, and treatment varies greatly between them. So this is a good thing, this means you're getting proper help. Your doc may not know 10% of T2's are slim, and never were overweight to begin with. So T2 is still in the cards, for the moment. With T2, you could achieve remission on diet only, or diet in combination with medication. You could go for medication only, but I can't quite recommend that as then it is a progressive condition which will need ever more meds. But that's entirely up to you. If it's T1, you'll need insulin. There's Mody/Lada/T3c... But 1 and 2 are the most common types.

Whatever the outcome, (and there will be tests to see whether you still make enough insulin or are insulin resistant etc), you're more than welcome here to ask for advice, or have a rant, or whatever you need. The only thing you have to remember right now is that you'll be okay. And if there's anything you need from us, let us know.
Hugs,
Jo

 

[NixiHB]

Hi, and welcome,

I'm with the others: Don't panic, you're in the mill now, you'll be okay. As for why you're being sent to the clinic; with raised levels, in two consecutive tests, they are sure you're a diabetic. The clinic is being called in to find out what type. There's all sorts, not just 1 and 2, and treatment varies greatly between them. So this is a good thing, this means you're getting proper help. Your doc may not know 10% of T2's are slim, and never were overweight to begin with. So T2 is still in the cards, for the moment. With T2, you could achieve remission on diet only, or diet in combination with medication. You could go for medication only, but I can't quite recommend that as then it is a progressive condition which will need ever more meds. But that's entirely up to you. If it's T1, you'll need insulin. There's Mody/Lada/T3c... But 1 and 2 are the most common types.

Whatever the outcome, (and there will be tests to see whether you still make enough insulin or are insulin resistant etc), you're more than welcome here to ask for advice, or have a rant, or whatever you need. The only thing you have to remember right now is that you'll be okay. And if there's anything you need from us, let us know.
Hugs,
Jo

Oh wow thank you for all of this. So it is normal to not know what type you have until your first appointment? Do you know what tests I will have to have when I get there? Sorry for all the questions, I feel so in the dark.

 

[JoKalsbeek]

@NixiHB
PS: If you're feeling very ill, you can do 2 things to maybe feel a little better before your appointment.
1: Cut back on carbs, as practically all carbs turn to glucose once ingested. So go for meat, fish, poultry, eggs, cheese, cream, full fat greek yoghurt, above ground veggies/leafy greens, nuts and extra dark chocolate. Avoid bread, pasta, rice, cereal/porridge/museli/weetabix, corn and fruits. (Berries are okay, as are avocado's, starfruit and tomatoes.). That way your body has less glucose to do battle with.
2: Get yourself a meter. It'll teel you where you're starting from and will give you invaluable information.

 

[xfieldok]

Thank you for the advice. I'm just finding it very strange that I have got an appointment at the diabetes centre before they even know what I have!

Count your blessings. I am T2 and was diagnosed November 2017, I was told to have a good Christmas and come back in the New year. My numbers were sky high although at that time I didn't know enough to ask what they were.

If you are T1 you need to be seen sooner rather than later.

Although I was diagnosed T2 I was offered insulin. I said no thanks and through diet and the help of this forum, I got my numbers down to normal levels in 5 months. I am still T2 and probably always will be.

 

[JoKalsbeek]

Oh wow thank you for all of this. So it is normal to not know what type you have until your first appointment? Do you know what tests I will have to have when I get there? Sorry for all the questions, I feel so in the dark.

Often, when a patient is overweight, they assume T2, because the odds are great and the tests expensive. I was overweight, but responded really badly to the metformin I was given, so they did the tests anyway because they thought I might be a late onset T1 after all. I wasn't, just a lowly T2 here, I'm really prone to suffer side-effects (from anything, not just metformin). But yeah, sometimes stuff like weight, or responses to medication can throw some doubt on the type, and they really have to make sure what they're treating. It happenss more often than you might think.

 

[JoKalsbeek]

Oh wow thank you for all of this. So it is normal to not know what type you have until your first appointment? Do you know what tests I will have to have when I get there? Sorry for all the questions, I feel so in the dark.

Completely forgot to answer the last question! They'll probably do a C-peptide test and one whose name I always forget. Plus, probably check for other factors of metabolic disease; kidneyfunction, bloodpressure, cholesterol, liverfunction... Most T2's have metabolic syndrome; T2 is a part of it. I have all issues except for high bloodpressure; mine's always been low. But my liver was so packed with fat (non-alcoholic fatty liver disease) that they thought it was one big tumor. So while getting diagnosed, I also thought T2 wasn't going to be a problem for long, because cancer was going to kill me in a matter of months. Stressful times, and it was just fat! Thankfully, the T2 diet I'm on also tackles fatty liver disease and my cholesterol is fine now too. But they're likely going to check you for a whole lot of things. Maybe make an ECG, check the soles of your feet for nerve damage... It's a whole lot in one go, but it's all normal, and all a good thing. It's better to know what's going on, than to be oblivious. So do ask for print outs of all your testresults... You'll want to be able to compare them as you go on.

 

[Daibell]

Hi. In one way you are lucky. Your GP has considered the possibility of T1; mine told me there was no way I was T1 despite being stick thin, not responding to all the tablets and with no T1 tests. I finally got the insulin I needed. There are two tests for T1 called GAD (for antibodies) and c-peptide to check your insulin level. A negative GAD is not conclusive for not being T1. Around 15% of T2s are not overweight and I suggest many will be mis-diagnosed T1s like me. You have a good GP so hopefully you will end up with the right diagnosis and treatment.

 

[NixiHB]

Completely forgot to answer the last question! They'll probably do a C-peptide test and one whose name I always forget. Plus, probably check for other factors of metabolic disease; kidneyfunction, bloodpressure, cholesterol, liverfunction... Most T2's have metabolic syndrome; T2 is a part of it. I have all issues except for high bloodpressure; mine's always been low. But my liver was so packed with fat (non-alcoholic fatty liver disease) that they thought it was one big tumor. So while getting diagnosed, I also thought T2 wasn't going to be a problem for long, because cancer was going to kill me in a matter of months. Stressful times, and it was just fat! Thankfully, the T2 diet I'm on also tackles fatty liver disease and my cholesterol is fine now too. But they're likely going to check you for a whole lot of things. Maybe make an ECG, check the soles of your feet for nerve damage... It's a whole lot in one go, but it's all normal, and all a good thing. It's better to know what's going on, than to be oblivious. So do ask for print outs of all your testresults... You'll want to be able to compare them as you go on.

Thank you so much for all of this info. It's an absolute minefield isn't it?! Completely overwhelmed with it all. I guess I'll be in the hospital for quite a while on Monday then? Maybe I should book the day off work...

 

[NixiHB]

Hi. In one way you are lucky. Your GP has considered the possibility of T1; mine told me there was no way I was T1 despite being stick thin, not responding to all the tablets and with no T1 tests. I finally got the insulin I needed. There are two tests for T1 called GAD (for antibodies) and c-peptide to check your insulin level. A negative GAD is not conclusive for not being T1. Around 15% of T2s are not overweight and I suggest many will be mis-diagnosed T1s like me. You have a good GP so hopefully you will end up with the right diagnosis and treatment.

I'm so sorry that happened to you! I'm really hoping that it is type 2, I don;t know how I will cope with injections - the blood tests have been enough for me :'(

 

[NixiHB]

Count your blessings. I am T2 and was diagnosed November 2017, I was told to have a good Christmas and come back in the New year. My numbers were sky high although at that time I didn't know enough to ask what they were.

If you are T1 you need to be seen sooner rather than later.

Although I was diagnosed T2 I was offered insulin. I said no thanks and through diet and the help of this forum, I got my numbers down to normal levels in 5 months. I am still T2 and probably always will be.

That's great news - well done on getting your levels down to normal! I have cut out all added sugar and in myself feel better just from that change - so I'm hoping I will too be able to deal with this by changing my diet.

 

[JoKalsbeek]

I'm so sorry that happened to you! I'm really hoping that it is type 2, I don;t know how I will cope with injections - the blood tests have been enough for me :'(

Well, I'm hoping for T2 right along with you, because I'm useless with T1 advice and I'd love to be able to help, haha. Seriously though... Injections you can get used to. Just like finger prick testing, it becomes routine. Our cat is on insulin and those needles are really thin; barely feel them. (I've stuck myself by accident. Husband too. And the table and floor got speared once or twice in the last 4 years).

T2 is easier to beat into submission, though the change in diet isn't for everyone. I'm rather enjoying what I eat, (I am on a ketogenic diet, less than 20 grams of carbs a day) but lately I've heard from quite a few people they find the diet too restrictive, often because they also have other issues to contend with. It all depends on what you want. Oh, tip: Try reading Dr. Jason Fung's The Diabetes Code, which is helpful no matter what type you have, (It will also help you understand the disease and will help you with what questions to ask at your appointments!) and check dietdoctor.com for low carb meals. If cutting out sugar is making you feel better, you'll be surprised what taking it a step further will do for you.

I was rather badly off when first diagnosed... I've been in remission for 2 years. It's been 2 years and about 4 months or something since diagnosis. So yeah, it can be done.

 

[Boo1979]

That's great news - well done on getting your levels down to normal! I have cut out all added sugar and in myself feel better just from that change - so I'm hoping I will too be able to deal with this by changing my diet.

As others have said, overall T2 is the most common form of diabetes - however,the important caveat is that while T2 is the most common type in the population as a whole, it is mainly assosciated with middle / older age and is not that commonly diagnosed at your age (26). T1 is more common in childre adolescents & younger adults - the 2 types have different treatments and although diet is important in both forms, it cannot ‘cure’ T1 which is an autoimmune disorder.

 

[JoKalsbeek]

Thank you so much for all of this info. It's an absolute minefield isn't it?! Completely overwhelmed with it all. I guess I'll be in the hospital for quite a while on Monday then? Maybe I should book the day off work...

I'm thinking it'll be about 2 hours, between tests, talks and what have you, unless they do a tolerance test as well, that takes a few hours extra. I doubt it'll be a quick 10 minute thing. Unless all they do is a blood draw, which is doubtful. But then, I'm in the Netherlands. In any case I'd take the day off if I were you, if only to be able to process everything that's happening, and what'll all be discussed and whatnot.

Everyone's overwhelmed when they start out. And you get so much information all in one go. It helps to take notes.

 

[NixiHB]

I'm thinking it'll be about 2 hours, between tests, talks and what have you, unless they do a tolerance test as well, that takes a few hours extra. I doubt it'll be a quick 10 minute thing. Unless all they do is a blood draw, which is doubtful. But then, I'm in the Netherlands. In any case I'd take the day off if I were you, if only to be able to process everything that's happening, and what'll all be discussed and whatnot.

Everyone's overwhelmed when they start out. And you get so much information all in one go. It helps to take notes.

Can't thank you enough for all of this info. Fingers crossed for T2 and that I can kick this things butt!

 

[NixiHB]

As others have said, overall T2 is the most common form of diabetes - however,the important caveat is that while T2 is the most common type in the population as a whole, it is mainly assosciated with middle / older age and is not that commonly diagnosed at your age (26). T1 is more common in childre adolescents & younger adults - the 2 types have different treatments and although diet is important in both forms, it cannot ‘cure’ T1 which is an autoimmune disorder.

Which unfortunately makes sense for me, as I already have autoimmune disorder with Granuloma Annulare