Hello, Please Advise me, recently diagnosed T1

[Sut T1]

Hi Everyone,

I am 34 years old and was told four weeks ago I have Diabetes Type 1 and put on the Novomix '30' insulin pen. I am having am and pm insulin intake, gradually increasing the dosage until i hit my 'ideal range'. I don't feel like I have had much support from my senior diabetic nurse, he has seen me once after the initial diagnosis day and even then it was 'oh, what are you here for?'. I have to see him again in Feb in regards to a follow up blood test to see if my Hbac has gone down from what it was.

I know, i know, everyone is going to tell me to go back to him and ask the questions as it is my health and all that but he is not very engaging or approachable and I feel more awkward going back.

Anyway, my question relates to insulin and weight gain. I have already put back the weight I lost pre-diagnosis and having had a session on google last night ( that's how I found you guys!!) I became more and more depressed that insulin leads to weight gain? Is this true and what have you all experienced?

Weight gain really bothers me and whilst I would consider to be in the healthy weight (8 st 5 lbs) and BMI range at present, from what I read last night, no matter how healthy I eat and exercise and regulate my blood sugars, its all for nothing?!? The insulin will make me put on weight? I know we are all individuals and different body types but I already have low self-confidence esp in regards to my body image and that is all I have thought about all day at work, thus depressing myself even more I guess.

(( WARNING: Sorry, not to upset, offend or gross anyone out but a question in regards to Menstrual Cycle coming up!!))
Also, can anyone advise me on the menstrual cycle and if the insulin affects this, as I am already late and this is also bothering me too (no, def not preggers!!)

I saw the dietician but she said it was too early to advise me and from my food diary told me I was not eating anything wrong ( I have stopped the cakes and biscuits though)! I do get days when I feel I am more hungry and i have read up on the info relating to the way insulin works.

Sorry to harp on but maybe it is my vanity speaking out, I just need advice please as I am lost, scared and feeling sad about all this!

Thank you and very grateful to you guys for reading this!

 

[Copepod]

Welcome to the forum, Sut T1, but sorry you have to be here.
You'll only gain weight if you eat more calories than you need. I was also diagnosed as a young adult womn, aged 30 years. I only put back the weight I'd lost running up to diagnosis, then hunger began to decrease.
The thing that bothers me is that you've been put on bimodal insulin, twice a day, which may mean you have to eat to match your insulin. There's another regime, called basal bolus or MDI (multiple daily injections), which involves one or two injections of long acting insulin in every 24 hours and one injection of short acting with each meal of carbohydrate (usually 3 in 24 hours). Basal bolus is far more flexible, as you don't need to eat unless you want to. You will need to ask your diabetes specialist nurse about this - they may be more helpful when they realise that you want to take control of the situation, although no guarantee, sadly. Don't wait until March, though.

 

[Northerner]

Hi Sut T1, welcome to the forum 🙂 I'm sorry to hear about your diagnosis, and even more sorry to hear that you have been given such peremptory and poor care How did you come to be diagnosed?

Firstly, let me put your mind at ease regarding weight gain on insulin - it's largely a myth. I have been on insulin for 7/5 years now and, apart from the initial year when I regained all the weight I had lost prior to diagnosis, I have maintained a healthy weight (BMI 24.0) ever since - my weight varies by a couple of pounds at the most. So, I would say that if you had no problems maintaining a healthy weight before, then you will be able to do now you are on insulin. You should not be left to your own devices like this so soon after diagnosis - do you have access to a consultant? I would ask your GP for a referral to a consultant-led clinic so you can hopefully get some pro-active care.

The insulin regime you have been put on is not ideal, although it should be fine as you get used to things. Mixed insulin regimes require you to take fixed doses at fixed times of the day, and consequently you have to eat fixed amounts of food (carbohydrate) to 'match' the insulin dose. This is very inflexible, and there is a much better regime where you take one type of insulin once or twice a day, then another type of insulin each time you eat - the chief difference being that you choose when and how much to eat, - or if you want,to miss a meal entirely. This regime is called MDI (also called 'basal/bolus').

I would highly recommend getting a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas - this is a very comprehensive reference guide to Type 1 (whatever your age!) and will explain every aspect of living with Type 1. Hopefully, it will clear up some of your concerns and also give you an idea of the topics you need to know about.

Regarding your concerns about your periods, it may be related to the circumstances prior to your diagnosis. Once you are settled and able to control your levels well there should not be any problems - we've celebrated many 'forum babies' here over the years! 🙂

If there are any questions you have, just let us know - there are loads of people here with many years experience of living with Type 1, and anything you can think of we can help with 🙂 PLEASE do not worry! There is no reason why, once you have got your head around things (and I admit, there's a lot to learn in a short space of time!) you will be fine, happy and healthy! 🙂

 

[Matt Cycle]

Welcome Sut T1

Yes, I'm not sure where this insulin causes weight gain idea comes from. I've been using it for 29 years and I'm the same weight now as I was from before I was diagnosed and my BMI is 19.3. A bit like Northerner my weight never seems to change by much year in, year out. I only find out what it is at my diabetes check-ups and never normally give it a second thought.

If you're a healthy weight and BMI now then a sensible diet and plenty of exercise and you'll be fine. 🙂

As you can guess I unable to offer any advice on insulin and your menstrual cycle 😉 but some of the female members should be able to help. 🙂

 

[trophywench]

Well being T1 shouldn't change anything menstrual cycle wise. However - you have to think that your body has just had a kick up the backside, so to speak! - so I'd say don't worry about it - unless there's a reason to worry like not wishing to be preg and a chance you could be or something like that, no idea about your circumstances so don't be offended by that comment - just if it fits then you need to do a pregnancy test as you would anyway should this type of thing happen. LOL

Just before you menstruate on a monthly cycle as per normal - your insulin needs will most likely increase slightly but on the regime they have put you on - it will be very difficult if not impossible to adjust doses.

The latest NICE Guidelines say we (us T1s) should all be on MDI as soon as we've been diagnosed, basically - so don't bother with this unhelpful nurse - go to your GP and ask to be put on it and say why you are asking !

 

[TheClockworkDodo]

Hello Sut T1, and welcome 🙂

As everyone else has said, please don't worry about insulin causing weight gain - it certainly hasn't for me! I was diagnosed nearly five years ago (at age of 44) and I am still a healthy weight. My BMI varies a bit, but it's around 20.5, and I'm about the same weight as you, and about the same weight I was before I had diabetes. I was underweight when I was diagnosed and I struggled to put the weight back on again afterwards - the insulin had no effect, I had to eat loads of jam sandwiches and cakes.

I agree with everyone else about your insulin regime too - MDI would be much better. It means you can eat what you want when you want, or even miss a meal once you know what you're doing with it. I definitely agree with Northerner and with Jenny about going to see your GP as soon as possible, and asking to be put on MDI, and also to be referred to a diabetes clinic if you're not already attending one.

It's quite likely you will see a different nurse next time if the nurse is one you're seeing at a clinic - if not, it's worth asking to see a different one (ask when you get the appointment or ask the receptionist when you arrive who you will be seeing, and if they tell you it's the nurse you don't want to see, ask if there's anyone else. If you feel awkward about explaining why, you could always just say you'd be more comfortable seeing a female nurse - I've done this with GPs with no problem, and you don't have to explain).

I was missing periods for the few months before/after I was diagnosed with diabetes, and had thought it was the menopause, and then I suddenly started having them again, which was a bit of a shock! So I'm guessing the diabetes can stop them for a while, especially if you lost a lot of weight prior to diagnosis. I am menopausal now and can't quite remember how the insulin effected my cycle, but I don't think it did much, except that I was particularly prone to hypos during my period.

Please don't worry - and please don't google too much, it was one of the things they warned me not to do when I was diagnosed - there is a lot of rubbish out there about diabetes! But I'm glad it led you here: the diabetes UK site was the one site they told me was likely to be accurate.

 

[trophywench]

Oh yes I meant to say - you can see how long I've been taking insulin - it's never caused me to gain any weight.

What is causing me to put weight on is giving up smoking because I compensate with food!

 

[Flower]

Hello Sut T1 and welcome 🙂

Prior to diagnosis every system in your body is affected and thrown into disorder by a lack of insulin. As soon as an insulin supply is restored things start to improve but after such a recent diagnosis it will take time for all the systems in your body- including your menstrual cycle - to settle back into equilibrium. As the others have said try not to worry too much and give it some time to level out.

I'm an advocate for MDI/Basal bolus it gives you so much more freedom with what and when you eat and also allows you to do correction boluses of quick acting insulin if your blood sugar is too high. If you were a happy weight before diagnosis then there is no reason why you shouldn't maintain a happy weight with insulin.

Please don't despair or over worry about things, now you have an insulin supply your body will start to get back to doing things normally. If you are not happy with the diabetes nurse you saw ask to speak to someone different, it's your diabetes and you need the best support, advice and encouragement possible.

Good luck with it all and use this forum as much as you need as it's packed with lovely diabetics with years and years of experience who are always happy to help 🙂

 

[HOBIE]

Welcome to the forum. When your body is not working properly in T1 you loose weight. When its working well (bg right) you will put weight on. Really different to T2. For years I used to race catamarans. I used to carry 3 bricks on my boat to do the Nationals. !0 stone 10 was the min weight & I was less than that Now on a pump & the best 🙂

 

[Sut T1]

Hi Everyone,

Wow, thank you for the advice, my spirits are somewhat lifted and I feel reassured and hope the weight gain does not become a problem for me. Its the hunger which is hard as like I mentioned I have already put the weight I did lose back on but I still have the hunger! ( Or, am I just now being greedy?1?)

I did not really have textbook symptoms, my fasting blood results were high and I think my surgery nurse was unsure and was about to put me on metformin but then called the diabetics clinic up and the senior diabetic nurse ( who I have been allocated to - the unfriendly / unapproachable one) recommended the insulin.

The funny thing is ( or maybe not so funny from what you guys are telling me!), I have only seen him twice and on the latter visit, he did mention four injections per day, but that was it!!! Nothing about what its called or the benefits of it. The thought of 4 injections at that time put me off as I thought it was the same as the novomix 30 but 4 injections instead of the 2 I am on at present.

I guess I am going to have to do something as not sure I can keep this up and in the back of my mind the weight issue is a concern. I have always maintained a healthy weight.

Some further questions, if that's ok? I was wondering does T1 lie dormant for months or is it just a sudden problem that starts? I think I have read T2 can be undiagnosed in people for a long time, does this apply for T1?

Also, can people on insulin ever stop taking it and be given tablets instead? - I know its the pancreas that stops working but it is something I have heard from a few people; does the pancreas start producing insulin on its own again?. Last question - are there misdiagnosis between people withT1 and T2?

I just feel that the lack of support I have had from my healthcare professional has left me a bit vulnerable in knowing what to do, eat and generally act on. So, thank you for the advice, it is much appreciated and I am so very grateful.

And, yes I will def be getting the book by Ragnar!

 

[Robin]

Hobie, by 'you will put weight on' do you mean, 'you will be able to regain the weight you lost while undiagnosed if you need to,' ? My body is working well, and I don't put weight on, unless I eat too much. (I tend to put weight on in the autumn, when the weather gets colder, because I feel hungrier, and I lose it in the spring when I get out into the garden again. This was the pattern long before I was diabetic, and has continued since diagnosis. Nothing to do with insulin.)

 

[Sut T1]

Yeah, not going to lie, that worried me a bit but maybe I did not understand Hobie's reply?

 

[Robin]

Just a few quick replies, Sut T1, while I'm cooking tea!
I think Type 1 nearly always manifests itself more quickly than type 2, which as you say, can have gone undetected for years. Children normally become very ill very quickly, with adults it is slower. There is often what's called a 'honeymoon period' where levels of insulin recover a bit, sometimes in fits and starts, soon after diagnosis. there is a lot of research going on at the moment ( read Stephknits Diabetes Fairy blog for more info)into trying to stop the remaining Pancreatic cells being destroyed, but nobody has managed to reverse the process yet, once they've stopped producing insulin, they've stopped for good, so no, it's not usually possible to stop insulin and move back to Type 2 tablets.
A lot of us on here who were diagnosed as adults were misdiagnosed as Type 2 to begin with, I've not heard of it the other way round.
Sorry that was a bit rushed!

 

[Northerner]

Hi Sut, to answer a few of your questions: the hunger is a feature of how your body has been trying to cope prior to diagnosis. Without insulin, it has to work much harder to provide the energy you need to live on by burning fat and muscle tissue, but once you get the insulin it has suddenly got an easy to use source again and it craves this. This will pass before too long, so don't worry. It's not you being greedy, it's your body trying to repair itself and prompting you to eat all the time! The same thing happened to me - I could eat a horse between two bread vans at every meal! The constant hunger started to fade and pass, but it did take a few weeks. Now, I eat perfectly normally - occasionally giving in to the urges to pig out, but rarely! 😱

It sounds to me like you are probably what is known as LADA - Latent Autoimmune Diabetes in Adulthood, sometimes referred to as Type 1.5. This is a slow-onset version of Type 1, where you lose your ability to produce insulin over a long period of time. Often, as in your case, the symptoms may not be very pronounced, because the decline in insulin production is slow enough for the body to adapt up to a certain point. There are a lot of us here, and to answer one of your other questions, it's very common for someone with LADA to be diagnosed as Type 2, which can lead to them being put on inappropriate treatment, so it's very good that your situation was spotted early on and you were put on insulin 🙂 If you need insulin then, as a Type 1 or LADA, you will always need insulin (although there are many research projects going on all the time to try and find ways of repairing the beta cells and regaining insulin production). I've been diagnosed for over 7 years now, and I am still producing some insulin, but not enough that I could live without injections. With Type 2, it is sometimes possible to come off insulin or other medications, because in Type 2 the pancreas is still producing insulin but it can't use it properly due to something called 'insulin resistance' - overcome the resistance and the body's insulin can be used normally again.

I would recommend going back to that diabetes nurse and asking again about the MDI regime. Tell him that you didn't really understand what it entailed at the time, but having spoken to some people and read up about it, you think it will be better. Ask him to explain it to you so he feels useful 😉

Again, any more questions - let us know. We never get tired of listening, and just want you to feel comfortable and knowledgeable so you can manage your diabetes with confidence 🙂

 

[HOBIE]

When you are T1 & not in control you loose weight. There are many types of diabetics & all different. Good luck with Dsn

 

[trophywench]

I was pig sick actually, I've never had much of a waist (am short waisted anyway) though I was a stock size 12 since before I left school in 1966, so in 1972 when I suddenly became a stock 12 - 34B bust, 24" waist 35" hip, size came up 34/24/36 in those days) I was mega pleased even though I felt grim. Of course as soon as I was diagnosed and got my first jab I started to feel better but within 3 weeks I was already back up to a 27" waist though the hip and bust measurements stayed the same. Bollards ...........

Guess what? - at 65, I'm still in size 12s ! (but if you ask me - they ARE making em bigger now ....)

 

[Sut T1]

Thank you so much Everyone!

The advice means a lot to me and I think I am starting to accept and get my head round it all! It's not going to go away!!

I remember having a bad week following my diagnosis on the Monday; on Tuesday I was told I would be made redundant from work and then on the Thursday my car broke down in the middle of the road!! Hence, my head has been all over the place.

'I will be back' with some more of my daft questions 😛 but sincerely thank you for the advice, I did not know who else to turn to xxxx

 

[AlisonM]

You are in the wars aren't you! Regarding the diabetes, I'd ask your doctor for a referral to a diabetic consultant who will be able to discuss your needs more fully and address the insulin issue. I too think you ought to be on MDI not fixed doses as soon as possible. I was on fixed doses for a long time and they didn't work at all well. If you're LADA like me then your numbers may be erratic anyway as your pancreas might decide to dump insulin into the system at any time it chooses, not being able to adjust your dosages could leave you either too high when you haven't enough insulin or worse, too low when you have too much. I've recently persuaded them to let me do MDI and it's working a treat for me, things are far more stable.

I hope you get things sorted out soon.

 

[Sut T1]

Hi Again!

I have another question to ask please .... on the MDI, would you still be at risk of having hypos? As I have mentioned I am on the 'novomix 30' twice daily and if I miss or delay a snack, I can feel the onset of a hypo coming on, thus I have to eat something when I am not even hungry!

Does being on MDI limit the chances of hypos?
Sorry if this is a daft question 😛 but I'm still learning

Thank you.

 

[AlisonM]

With MDI, they should happen less often, but it's always possible to have hypos. MDI is a more flexible way of using insulin but it can still happen for instance, if you inject and then delay eating, or inject too much for the amount of carb in your meal, or just cos it's 3pm, or raining, or Friday.