Wrong diagnosis

Rae1709

Member
Relationship to Diabetes
Type 1
I had phone call today from a diabetic nurse to tell me that when I was in hospital with DKA - six weeks ago - I had a special blood test and the results have just come back that I am Type 1 not Type 2 as they thought and had been treating me for. I must admit I haven't been feeling that great but thought it was due to the fact that I am caring for my sister. I now have to inject myself 5 times a day, as my pancreas is not producing little/any insulin. Has this happened to anyone else and if so, will I have to have 5 injections a day for always, or is it just to start with? I was in such a shock that it had taken so long that I forgot to ask.
 

Inka

Well-Known Member
Relationship to Diabetes
Type 1
Hi @Rae1709 Sadly being misdiagnosed as Type 2 when actually Type 1 isn’t uncommon, especially in adults.

Yes, it’s a big shock being told you need insulin injections. It takes a while to get your head around it. Be kind to yourself and know that you’re not alone.

5 injections a day is a common treatment for Type 1. Although it seems an awful lot to start with, they soon become routine. Multiple injections a day make it easier to control your blood sugar and lead a more flexible life.
 

Freddie1966

Well-Known Member
Relationship to Diabetes
Type 1
I also had a DKA and was given insulin . Told I was type 1 . Then went to see another consultant who told me I was not taking enough insulin so was type 2 , and she was going to take me off insulin . Luckily she also ordered the blood tests and they came back confirming I was type 1 .Hopefully now you will receive the treatment you need x
 

Sally71

Well-Known Member
Relationship to Diabetes
Parent
Yes unfortunately the injections will be every day for the rest of your life. Unless a cure is found, but that is unlikely to happen any time soon. Hopefully you will soon get used to them though. Having 5 a day gives you much more flexibility to eat what you want when you want rather than the old regime of only one or two injections a day, which meant you had to be very rigid with times of eating and portion sizes.
 

rebrascora

Well-Known Member
Relationship to Diabetes
Type 1
Hi and welcome to the club.
I did 6 weeks of Type 2 medication and learning to eat very low carb in order to try to get my BG levels under control before they started me on insulin and another 6 weeks before they tested me for Type 1, so it is not uncommon to be misdiagnosed when it comes to diabetes.

Unfortunately it is likely you will need to inject insulin for the rest of your life unless they eventually find the Holy Grail... ie the diabetes cure. It may be that you are lucky enough to be offered a pump at some point in the future which means that you will have a little device attached to you which slowly feeds tiny amounts of insulin into you throughout the day and night but they are expensive and need some experience and knowledge to work well, so not available to everyone at the moment. The good news is that technology is improving all the time and we are so fortunate to live in an age when so many advances are being made in that field.
 

Bruce Stephens

Well-Known Member
Relationship to Diabetes
Type 1
Injections or a pump. (Most likely.) We don't produce insulin (or not enough insulin) and so we need to replace it, and it doesn't work if it's ingested. (Can be inhaled, I think.) So (apart from the inhaled version) it's injection of some kind.
 

SB2015

Forum Host
Relationship to Diabetes
Type 1
Thank you all for your replies and support, very much appreciated.
Hi Rae

Whenever you are diagnosed it is a shock, and the mix up between T1 and T2 in Adults is all too common. I am glad that you now have a proper diagnosis and the treatment that you need, as you have been told, for the rest of your life. Which insulins have they put you on?

The best analogy I have seen is liking the T1 diagnosis to learning to drive. Driving all seemed incredibly complicated at the start (or it did to me) but then quite quickly just became automatic and you just needed to watch for obstacles and changes along the way when driving. So it is with managing T1. You will find that it just becomes part of your new ‘normal’ life.

You have already seem that there is plenty of help and advice available on here. Just fire away with any questions that you have. Nothing is considered silly on here.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
After I was diagnosed it took me a couple of years I reckon, to stop just bursting into floods of tears for no apparent reason - when I was at home mostly and usually on my own. My husband was good, never asked daft questions and just hugged me till I finished sobbing. Approximately 25+ years later someone pointed me at 'The 5 stages of Grief' by Elisabeth Kubler Ross where she explained what the 5 stages are - and I could still plot my way through them pretty easily - it isn't at all strange apparently! It's simply what people do - and need to do! - when they're diagnosed with any chronic condition. Well - Gosh! - never had any psychology training before. Here you are - https://grief.com/the-five-stages-of-grief/ - plot your way through them as you go on - they help!
 

stephknits

Well-Known Member
Relationship to Diabetes
Type 1
Hi it is a shock, but hopefully you will begin to feel better now you have the insulin. I was wrongly diagnosed too, and went for 9 months eating as few carbs as possible and getting very skinny before being tested for type 1. Great support here on the forum.
 

Rae1709

Member
Relationship to Diabetes
Type 1
I know this probably sounds really bad with all that is going on, but I just feel really let down, especially by my GP who just didn't listen to me and I ended up having a DKA attack. I have been on insulin since I left hospital in April, but apparently it is now the wrong insulin? Now being misdiagnosed, but as some of you rightly say I can finally sort myself out. The thing is it is really difficult as I am caring for my terminally ill sister and her husband (he had Covid and has just got out of hospital after 6 weeks), my only respite is going to Tesco's every day for shopping
SB2015 -I never learnt to drive, had 18 lessons and was still useless.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Rae - what insulin is it and what do they want to change you over onto?
 

Rae1709

Member
Relationship to Diabetes
Type 1
Rae - what insulin is it and what do they want to change you over onto?
Hi Trophywench, at the moment I am on Humulin (22 am/18 pm) plus 1000mg Metformin a day. I am waiting for an appointment to see the nurse at the hospital to find out what insulin they are changing me to. I am quite surprised really, thought I would have got a call yesterday, so I will call today just to jog their memories. I just would like to feel normal.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
I hate Humulin or rather my body does, I originally thought you must be on two of a proper long-acting insulin and Levemir is the usual one that's required twice a day and people find much easier to get along with well, then a proper fast-acting insulin (eg Novorapid or Humalog) before each meal. Never come across one of the Humulin varieties being injected that many times a day before.

Anyway they're right about it being old-fashioned - you do need to get onto a decent modern mixture of different insulins asap - and then we all can really help you to start to feel like you again!
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Sorry to hear about your diagnosis runaround @Rae1709 - and especially sorry that you didn’t feel listened to. Must have. Been very frustrating with what came next.

Humulin 2x a day is very inflexible for a person who isn’t making much insulin themselves. It gives far too much at some times, and nothing like enough at others... and you can’t adjust the various parts of it to suit the way you want to live your life - you just have to eat (or not eat!) what the insulin ‘needs’.

5x a day might sound like a scary prospect, but that will give you 2x ‘background’ doses (so you can adjust to have more in the day and less at night or whatever you need) and then you can have 3x rapid acting doses for meals. So if you eat a bigger meal, you can take more insulin, and if you skip a meal or get delayed or help up, that’s fine too - you can must take the insulin when you need it. As much or as little as you need.

You might like to check out Ragnar Hanas’s book about T1 (don‘t be put off by the title!). It’s a great overview of T1 written in a clear and accessible style.

Keep asking questions, and let us know how you are getting on.
 

Rae1709

Member
Relationship to Diabetes
Type 1
Sorry to hear about your diagnosis runaround @Rae1709 - and especially sorry that you didn’t feel listened to. Must have. Been very frustrating with what came next.

Humulin 2x a day is very inflexible for a person who isn’t making much insulin themselves. It gives far too much at some times, and nothing like enough at others... and you can’t adjust the various parts of it to suit the way you want to live your life - you just have to eat (or not eat!) what the insulin ‘needs’.

5x a day might sound like a scary prospect, but that will give you 2x ‘background’ doses (so you can adjust to have more in the daily and less at night or whatever you need) and then you can have 3x rapid acting doses for meals. So if you eat a bigger meal, you can take more insulin, and if you skip a meal or get delayed or help up, that’s fine too - you can must take the insulin when you need it. As much or as little as you need.

You might like to check out Ragnar Hanas’s book about T1 (don‘t be put off by the title!). It’s a great overview of T1 written in a clear and accessible style.

Keep asking questions, and let us know how you are getting on.
Thank you. I finally heard from the hospital today and I have an appointment on Wednesday so that can give me different insulin and a new regime. I will check out the book you suggested as I feel I need all the help I can get.
 

Rae1709

Member
Relationship to Diabetes
Type 1
I hate Humulin or rather my body does, I originally thought you must be on two of a proper long-acting insulin and Levemir is the usual one that's required twice a day and people find much easier to get along with well, then a proper fast-acting insulin (eg Novorapid or Humalog) before each meal. Never come across one of the Humulin varieties being injected that many times a day before.

Anyway they're right about it being old-fashioned - you do need to get onto a decent modern mixture of different insulins asap - and then we all can really help you to start to feel like you again!
Hi, I have not been given my new insulin yet. Humulin is the insulin I was given when they thought I had Type 2 and injecting twice a day. Sorry for the confusion. I have an appointment on Wednesday at the hospital to get different insulin and be shown my new regime. Hopefully it will not be too confusing.
 

SB2015

Forum Host
Relationship to Diabetes
Type 1
Thank you. I finally heard from the hospital today and I have an appointment on Wednesday so that can give me different insulin and a new regime. I will check out the book you suggested as I feel I need all the help I can get.
I am sure that once you have the two different insulins things will get easier. You can then adjust the background insulin (slow acting/ basal) to deal with glucose that your liver is dripping out to keep you going, and then work out how much quick acting insulin (Bolus) you need to deal with the carbohydrates that you eat.

Let us know how you get on.
 

Rae1709

Member
Relationship to Diabetes
Type 1
I am sure that once you have the two different insulins things will get easier. You can then adjust the background insulin (slow acting/ basal) to deal with glucose that your liver is dripping out to keep you going, and then work out how much quick acting insulin (Bolus) you need to deal with the carbohydrates that you eat.

Let us know how you get on.
Will do and thank you again.
 
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