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Undiagnosed T1 - advice needed!

C

ClaireH88

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Insulin
Hi Everyone
I would really appreciate some advice!
So it turns out I was misdiagnosed as T2 8 years ago and I am actually T1. Trying not to dwell on the late diagnosis side of things and just want to move forward!
I have been on insulin previously during pregnancy as Metformin never agreed with me. I was on Humalog / Humulin I however this caused me horrendous weight gain. I have been taking Canagliflozin which has helped me shed some of the pounds, but now they are trying to get me to go back on Humalog/Humulin. My faith is pretty shaken with the NHS at the moment as I am being passed from pillar to post trying to get some sort of plan in place. I am definitely not an expert when it comes to this, and a complete novice when it comes to insulin. The GP asked me which insulin I wanted to be on?! Any advice would be appreciated, particularly with different types of insulin and ones that won’t cause severe weight gain!
 

Claire, I'm not T1 and nor am I an insulin user, but having been around here for ages, it seems insulin doesn't cause weight gain, but it's more like it's because the insulin and food, activity and other factors aren't matched up too well.

Many with gestational diabetes and t2 are put onto mixed insulins, which deliver part long acting and part fast acting insulins.

Over time, as life gets in the way, it's unlikely the person will eat exactly the same things, in the same quantities, whilst undertaking exactly the same activity and getting the same sleep.

Using separate long and short acting insulins give more control, but take a bit more skill, to understand carb counting, calculating insulin doses and so on.

Were I in your shoes, I would want to be referred to a specialist diabetes clinic, at a hospital. Even if I thought my GP was the best GP in the world, I'd be keen to be treated by someone with specialist knowledge and experience.

Please ask to be referred, so that you can get the correct meds, the correct monitoring kit and the relevant education.

I do hope you start to feel better and more comfortable about things soon.

(p.s. - just to add that many adults are misdiagnosed with T2; especially if they carry and excess weight, but sometimes just because they're a grown-up. That won't help how you feel about your position, but hopefully you won't feel too alone.)
 
The correct insulin dose does not cause weight gain.
A healthy pancreas produces insulin without causing weight gain.
Many people with type 1 inject insulin and are not overweight.
I second @AndBreathe in terms of requesting to be referred to a specialist. They would not be asking you what insulin you want as your GP is. A specialist diabetes consultant will know the best insulin.
Please do so as fast as possible. Type 1 without treatment can be fatal.
 
I was batted back and forth for a couple of months and a c-peptide, GAD result and private consultation later, I was finally confirmed T1, but currently not on insulin; I was for 3 weeks, only 12 units max of Humulin M3 a day, but was going hypo so my knowledge of that idea is minimal, sorry.

However in my area T2s are dealt with by local diabetes nurse/doctor and T1s are all under the hospital team, (albeit that I won't get an appointment for over 12 months), but being T1 means I will get a Libre soon, and they will be there when I need them and/or insulin. Please make sure you have been referred correctly.

Are you eating low carb? I think that has been my saviour for not needing insulin yet, (and Metformin?), and the weight keeps falling off even though I don't have any left to lose and am having to load up on cream, avocados and cheese for now to try and slow this. If you are eating 'normally' and balancing with insulin, from everything I have read, it's an unhelpful vicious circle and won't lead to any weight loss. But different things work for different people. I cannot go on a Daphne course until I need insulin, so this may be something to ask about if you haven't done it already.

Good luck, I hope you get your support network and some advice sorted soon.

EDited to add: I definitely advocate for a basal/bolus regime (long acting background plus short acting insulin for meals) , because having to eat to balance your insulin rather than inject to balance your food tends to end up in eating more than you want or need, hence weight gain.
 
Last edited by a moderator:
HI @ClaireH88

I am a little shocked that they didn't do the T1 diagnostic tests if you were diagnosed aged 24, as relative young age is a red flag for it. However, you know have the diagnosis, and you can be sure you are not alone. Apparently half of T1s who receive a diagnosis as an adult are initially misdiagnosed as T2 (in UK). You may find the LADA/T1.5 forum useful as well as the T1 one.
Type 1.5/LADA Diabetes | Diabetes Forum • The Global Diabetes Community

From personal experience (left UK in 1999 so had 30 years of T1 there) most GPs don't know much about T1. Mine were always happy to leave my T1 treatment to the diabetic specialists at the hospital. I second @In Response and @AndBreathe in asking for a specialist referral.

Good luck, and don't forget to ask for a cgm or flash reader as well, as apparently all T1s now qualify in the UK.

ps I have some T2 tendencies (T2 father) and find that lowish carb keeps my weight from increasing, though I haven't had a lot of success in reducing more than a couple of kg.
 
Yes, in the UK GPs do not deal with diabetes, you need a diabetes specialist

they can not even recommend any change on your meds.

I remember this also when I once lived in Australia.
GPs did not do any changes to my insulin doses.
 
Mrs HJG said:
If you are eating 'normally' and balancing with insulin, from everything I have read, it's an unhelpful vicious circle and won't lead to any weight loss.
Click to expand...
Please please please do not spread the dangerous theory that insulin causes weight gain for people with Type 1.
My understanding is excess insulin causes weight gain which may happen if you experience insulin resistance
You cannot avoid insulin forever by eating low carb when you have Type 1. Your insulin producing cells (yes, your body is still using insulin even though you are not injecting) will eventually die so you will have to inject
I understand, injecting insulin will prolong the life of your remaining insulin producing cells.

The right amount of insulin does not cause weight gain or prohibit weight loss
Many of us with Type 1 are not overweight or have list weight without withholding this life giving drug.
 
A consultant appointment is an absolute must. It is in the NICE guidelines. Gps are just not up to date or knowledgeable enough. Tend not to prescribe up to date medications/equipment. Absolutely insist on a referral. You will need back up support whilst getting your levels adjusted. Plus they should prescribe a Libre and should help with carb counting advice.
Like others I disagree that a type 1s insulin usage makes them gain wait. It is the amount of food being eaten that the insulin has to accommodate that is causing the weight gain.
 

Here is an interesting and easy to understand article in Medical News Today about why T1's might gain weight from taking exogenous insulin. There is a complex relationship between calories, insulin dose and exercise levels.

https://www.medicalnewstoday.com/articles/325328
 

I don't think you read me correctly, I said 'If you are eating 'normally' and balancing with insulin, from everything I have read, it's an unhelpful vicious circle and won't lead to any weight loss' nothing about weight gain, in fact it might have been you I was quoting for all I know - everyone here says it doesn't cause weight gain, I agree. Weight loss needs a change of diet (low carb suggested), and as insulin will allow you to balance whatever you eat, then if your diet causes weight gain, insulin won't change that.
 
Getting the correct type of insulin and using the right doses is important and you would be better to see a diabetes specialist to determine which insulin and regime is likely to best suit your needs.

When beta cells produce insulin they do so in the right location - in the pancreas to reduce glucagon production from adjacent alpha cells. With insulin passing down the portal vein to the liver. Remaining insulin then passes to the rest of the circulation system.
If you can preserve some beta cell function you should do so, including starting on insulin therapy sooner rather than later as the insulin your body produces will help make control easier.

Injected insulin goes from fat into the circulation system so it starts in the wrong place with some finding its way to the liver etc. It will never work as well as the insulin produced by your body.

Weight control when having to use injected insulin is more challenging than it would be if your beta cells produced sufficient for your needs ... getting the specialist help in selecting the right insulin for you and the right dosing should make it easier than trying to work it all out yourself.
 
Ask for a referral to a specialist. Did a specialist diagnose you? We can not give advice on insulin types.
 

I think that's still the same calories in vs calories out basic argument - just saying that if you take too much insulin you'll need sugar (more calories) to stop the hypo so therefore you'll gain weight.

OP - it IS harder to manage when you have to inject insulin. I mistimed my injections the other week and had to stuff jelly babies and chocolate bar down me about 15 minutes before my dinner was ready. Definitely excess calories that day. On the whole though its the same weight management approach as an other person but you'll probably find that with more focus on carbs and weighing out food you end up eating smaller portions or healthier stuff.
 
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