• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Type 1 misdiagnosed as Type 2

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
J

JayType 1

New Member
Relationship to Diabetes
Type 1
Good evening everyone, I posted in July seeking advice as my medication was not helping me. I eventually got an appointment with a consultant. I want to thank everyone for their advice and to update

Male : 50 Type (2) diabetes, for around 4 years.

After various, combinations of pills over 4 years failed to have an impact, A diabetes specialist nurse from a diabetic clinic put me on insulin early April.

Humulin KwikPen 19 units daily +
Gliclazide 80mg x 4 daily
Metformin+ Sitagliptin 1000mg/50mg tablets x 2.

Despite the change, I started to have alarming memory loss, despite having a ferocious appetite and eating healthily I still couldn't gain much needed weight, I continued to rush to the bathroom way too often. The diabetes specialist nurse insisted that it must be my fault, that I must be using the syringe wrongly or that it was my diet that was the problem. After receiving great advice on here, I finally had that endocrinologist consultation Monday this week. I have Type 1 diabetes, I had been misdiagnosed all along as was suggested by members here.

I have a follow up consultation tomorrow, my new regime is;

ABASAGLAR 19 units pre-breakfast
HUMALOG 6 units pre-breakfast
HUMALOG 4 units pre- lunch
HUMALOG 4 units pre-dinner

My readings have been from 14-low 20’s with the exception of a 2.9. I have not been able to sleep well and I have been aware of heavier breathing. How long should it be before I see and feel an improvement. I have been on the dosages since Monday, also what affect will, living with a misdiagnosis for 4 years have on my recovery?

Thank you to all the contributors to my original post in July.

Jay
 
Sorry to hear about your misdiagnosis, Jay - there are several other people on this site who have had similar experiences who I'm sure will be able to answer your last question.

As far as how long it will take to see an improvement is concerned, it's better for you if your readings come down gradually rather than plummeting down all at once, as rapidly falling levels aren't good for us. But mine were down to normal within a week or two of first starting insulin, so it can be quite quick.

Your diabetes team may also need to continue to adjust your doses to get them right, because the ones they put you on at first will be a "best guess" so don't worry if it takes a couple more months to get that sorted out - they put my long-acting insulin down from 16 units to 6 after my first week, though I don't think many people are told to make quite such drastic changes! In the long term you'll learn to adjust your doses yourself and they'll need tweaking from time to time. But it sounds like you are on the right track now, so that's the main thing.
 
Let's get the last thing out of the way first Jay - it's anybody's guess what future things may have been already set in motion, is the answer. This is always the case unfortunately - and exactly how long had you been diabetic before you were wrongly diagnosed in the first place? You can't be classic Type 1 cos you'd not have survived if you were and I should think you are more likely to be LADA - which behaves exactly like Type 2 to begin with, and responds to T2 treatment for months or years - until nothing can possibly help until it's hit with insulin.

Diagnosed with T1 immediately I presented at my GP aged 22 - it was a full 20 minutes after the first jab of insulin before I noticed any difference although it took probably a week after that before I'd stopped peeing for England and drinking for the whole Borough of Kidderminster.

What time intervals pass between the blood tests you do at home? - because with BG constantly above approx. 13 - Type Ones produce ketones which turn our blood acidic (Diabetic Keto Acidosis - Google it, it's dangerous) and often causes nausea as well as inducing VERY deep sleep - have you reported your BG levels to your hospital nurse/clinic? - because sounds to me like you URGENTLY need a dosage review - so contact them tomorrow morning, tell them what's been happening and tell them you've been advised by another Type 1 diabetic to test for ketones.
 
I agree it's better done gradually but NOT if that involves having such high BGs for ANY length of time, except if you are an in-patient and under constant monitoring and surveillance.
 
Thank you for the replies, I have an appointment this afternoon with a consultant, I will post an update later.
 
Good - pleased you're seeing someone quickly!
 
Hi Jay, thank goodness you have finally got a correct diagnosis and are receiving appropriate treatment. I would suggest asking your consultant/nurse about going on a Type 1 diabetes education course, such as DAFNE, so you can learn how to adjust your insulin to match your carb intake and also to adjust/correct when your levels are too high.

I was undiagnosed for at least 18 months before I was diagnosed and do not appear to have suffered as a consequence. As suggested, your body must have been producing some insulin during that time, as was mine (and mine still is!), so hopefully no longer-term damage will have been done. There is always an element of luck involved in these things, but no point in worrying about things that may not be the case. Make sure you get your regular checks for eyes, kidneys and feet 🙂

I hope your appointment goes well! 🙂
 
JayType 2 said:
Thank you for the replies, I have an appointment this afternoon with a consultant, I will post an update later.
Click to expand...
Good to hear that you have a correct diagnosis now. So much easier to treat things once you know what you are dealing with.
 
Good morning,
I will definately look into DAFNE as I am finding the whole adjusting insulin intake to carbs rather confusing, to say the least. I have now had my treatment moved to a specialised diabetes clinic which is a step in the right direction. Any suggestions on self educating websites would be appreciated
 
JayType 2 said:
Good morning,
I will definately look into DAFNE as I am finding the whole adjusting insulin intake to carbs rather confusing, to say the least. I have now had my treatment moved to a specialised diabetes clinic which is a step in the right direction. Any suggestions on self educating websites would be appreciated
Click to expand...
The carb counting element of DAFNE is fully covered in the online course available at https://www.bertieonline.org.uk/ (BERTIE is Bournemouth's equivalent of DAFNE). Also worth downloading the free 'Carbs Count' from Diabetes UK, at https://shop.diabetes.org.uk/products/carbs-count-e-book

🙂

p.s. if you'd like me to change your User Name to 'JayType 1' now, let me know! 🙂
 
You could try this website - https://www.bertieonline.org.uk/ - though going to a DAFNE course (as well or instead) would probably be better as you get the chance to talk to other people with diabetes as well as to diabetes nurses if you do that.

The carbs and cals site has various resources, including an app for your phone if you're into that sort of thing, or a book if you're not! - https://www.carbsandcals.com/diabetes/type-1-diabetes (the book's probably cheaper on Wordery or Amazon but you can order direct if you want).

And if you just want to find out the calories in a specific food at any point, have a look at this website - http://www.calorieking.com/foods-v1/? - you put in the food you want to know about, select the amount from the drop down menu, eg no. of grams or ounces or cupsfull, and then it will tell you all the nutritional information about it, just scroll down a bit to see the carbs.
 
The other thing - and you'll get this from a proper diabetes clinic - is a 'smart' meter. Once you know your carb ratio, that means how many grams of carbs one unit of insulin 'deals' with (cos it's different for different people) you program that into the meter. Let's say yours is dead easy (and it's where most people start off and refine it personally from there) and is 1u for every 10g of carbs - so if you were going to eat a plain digestive that's about 11g - so it would tell you to have a jab of 1u. I think you probably calculated that yourself! - but hang on, if it isn't easy maths (eg 1u to 13g, or something else you don't immediately know your times table - and you also program in your 'target' range so the meter also calculates any correction to adjust the jab for the biscuit to bring you back to where you want to be, after eating the biscuit!
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top