Type 1 Weight gain after T1D diagnosis

Hi @Rosemaryy ,

Welcome to the forum. Yep, you're doing this right.

Weight, OK you will regain & stabilise with what was lost as your metabolism gets acustomed to having insulin back on the "team."

I do have one question. (Well two realy.) what insulins & regime are you prescribed.?
Is you profile picture a screen shot of the tiger from "life of pie?" (Great book.)

I'll tag in a few female T1s who may help regarding your question. @Diakat @Juicyj @Mel dCP @helensaramay
I'm a guy & diagnosed as a kid. So wouldn't wish to elabourate thoughts on the subject any further..

Regards,

J>

@Rosemaryy I'd hold fire on trying to lose weight til you become better at injecting what's right for you.
Even if you get diagnosed as a little insulin resistant your team can help with a tablet called metformin.
3wks is too early to truly diagnose that, I'd of thought. (specialist to diagnose, not us).
When I was new to insulin I wasnt told about corrections but this forum has really help me get my insulin right, better and first time with very few corrections and my new basal is intelligent so it gives very very few hypos. My novarapid however can cause loads of hypos if I over inject.
When are you seeing your team next? They may eventually offer metformin and if they do please at least try it as it can help with weight gain if your body is Insulin resistant, a little too.
Loads of options so don't fret about weight at the moment, it can be lost in a correct way.

Welcome to the club.
I know initial diagnosis is pretty shocking but things calm down as you get used to testing and injecting.
The best advice I was given on my diagnosis was that diabetes shouldn't stop you doing what you want. If you Google "people with type 1 diabetes", you will find some you never knew they were anything different.

My weight has been pretty stable for the last 25 years at least. I lost about 5kg before I was diagnosed but put this back on after my body got used to the injected insulin and nothing more.
I am not sure why you have put on more weight but as you have made other changes in your life, it may not be the diabetes.
With type 1 it is very unlikely you will be experiencing insulin resistance so soon after diagnosis.
Talk to your doctor and try not to worry (yeah, I know it's easier said than done).

Take a look around the site and forum. There is a lot of information and friendly people. One thing to remember is 90% of people with diabetes have type 2 so lots of the advice may not be relevant to type 1.
And feel free to ask questions. There is no such thing as a silly question

Hi @Rosemaryy
I was lucky that diagnosis came before full on DKA so I had only lost a couple of kilos. They went back on once the insulin hit Nd now I stay within a range of +/- 1kg depending on life stuff
So, none of that helps with your concern. Some gain is likely to be fluid. You do need to flag this worry with your team so they can assess if the gain is healthy and run through your diet in more detail.
Hope you get useful answers soon.
How are you otherwise?

Rosemaryy said:

Thanks for the reply @Jaylee

I use NovoRapid for every time i eat (i usually eat about 20-50 carbs per meal, and i add to that if i need to fix) and Lantus 21 units every day at 10 pm.
As for your second question, i have no idea. I just found this picture on google (I love tigers)

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Well, it's a great choice of picture.! Pi's lifeboat tiger in the story brings him strength to survive.

Hi @Rosemaryy, Thank you for posting and sharing your concern. I am sure you are trying to stay afloat in a sea of information and emotions. Imagine you are wearing a flotation vest (life jacket) to help you through the turmoil !!
The following is from my own experience as a T1D for 52 years (yes, there is definitely life after starting on insulin)!!! but it is not professional advice or opinion.
One measurement used for working out weight vs height is called the Body Mass Index (BMI), an example of a calculator can be found at heartfoundation.org.au - BMI calculator. Many organisations will have such calculators as weight is important for all sorts of health reasons.
So with a height of say, 167 cms and weight 70 kgs = BMI of 25.1 and at height 170 cms BMI = 24.2. In general a BMI between 18.4 to 24.9 is ideal. So you started at 60 kg at diagnosis? That = BMI of 20.8 to 21.5.
I am not registered to be able to interpret your results or to say whether BMI is the best measure to use. But I think you can draw your own conclusions and certainly discuss those with your health team.
The question that follows yours then might be, how do I stop gaining more weight than I need?
That is where your health team comes in also. In basic terms (which my brain can follow at least):
insulin (and other hormones) plus type of food plus exercise plus stress --> blood sugar levels and body weight.
Altering something on the left side affects the two items on the right.
Apart from insulin doses, the hormones causing monthly cycles can affect BSLs and weight (but also through fluid retention, at least temporarily). How many meals do you have per day and how many shots of Novorapid ? Again your health team can help with insulin doses and help you learn to adjust things yourself.
Type of food, and particularly carbs affects BSLs and weight. See the Home page for information about diet. (Type 2 diabetes (can apply to all types depending on need and Up-To-Date health professional opinion) This is not a recommendation for a particular diet but to give you an idea of what types of diet exist.
Stress causes the adrenal glands (they sit on top of each kidney like a monkey) to release cortisol, the body's stress hormone. Unfortunately cortisol makes insulin less efficient and insulin doses may need to increase.
Exercise improves insulin's sensitivity as well as burning "fuel', leading to the possibility of weight loss or stabilisation, and better BSLS (but also increasing risk of hypos).
There are other pesky, less predictable things like season change, and summer vs winter which seem to affect BSLS/weight too.
I expect you have had some input about 'hypos' ( hypoglycaemia, hypo- = low, gly- = glucose, aemia = in the blood). On the Home page - under Type 1 is some information about hypos - recognition and management.
This sort of info is very important for all us T1Ds and all on insulin and some other medications which lower BSLs.
Lots of hypos lead to excessive eating to prevent and treat them, weight gain also and hypos are potentially quite dangerous.
So best learnt early !!
Best Wishes with your journey and please keep posting along the way with any and every question.
We all have made mistakes at times with our diabetes and its management, so please do not be afraid to ask any question, no matter how basic it seems. We all probably asked the same or similar question at some point.
And we all have made enough mistakes to pass on what we have learned !!!

Rosemaryy said:

In short, i got diagnosed with t1 diabetes 3 weeks ago and i gained 10 kilos since that. Why?

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Before dx, your body wasn't able to use the carbs you were eating as energy - the glucose from the carbs can't go into cells as an energy source without insulin - so it looks for other energy sources, and starts burning fat and muscles instead, which isn't good: a byproduct of that is ketones, which acidify your blood and would have eventually killed you. You would likely have been weeing a lot to get rid of the excess unused glucose, dehydrating you.

There's a fair chance that the weight gain is a combination of becoming rehydrated, and regaining lost muscle. Muscle is heavier than fat, but it's "good" weight, because muscle can pull its weight.

One tip is not to look at the weight gain just as a number. Try to figure out where the weight has been added and what sort of weight it is. If it's muscle in useful places, that's a good thing. It means your body is rebuilding itself in a healthy way after a serious illness.

You say you have had body issues. One thing to be very careful to avoid is not using insulin, which can lead to eating disorders in T1.

Some people think that insulin causes weight gain. That may be true to an extent with T2, where insulin resistance requires massive doses, but it tends not to be the case with T1.

But, still, many T1s with body issues get to thinking if they use less insulin, they will lose weight. They eat without injecting at all, for long periods.

And guess what - they lose weight. But not in a good way - they have put themselves in a pre-dx state where the body starts to eat itself for fuel, making ketones and putting themselves at serious risk of dka, which kills.

It usually doesn't go that far, but the person will be running very high bg levels for extended periods and that does silent, slow, behind the scenes damage to eyes, kidneys, nerves which will eventually catch up with them.

We've seen many posts from people with serious eye problems, kidney failure etc. who would pay good money to be able to wind back the clock and use insulin properly instead of abusing it to lose a few kilos.

A story which always picks me up if I'm getting narked about T1 is Eva Saxl. She and her husband Victor were Jewish and fled the Nazis in WW2 to Shanghai, only to find that insulin supplies were cut off when the Japanese invaded. Eva didn't curl up and die. She and Victor figured out how to make insulin from scratch from water buffalo pancreata in a make shift lab, and saved Eva and a few hundred others. They then went on to become ambassadors for insulin provision in third world countries, and fought against prejudices which existed about T1 in the 1950s.

Eva had very real problems to deal with and she nailed them. We've got it easy: we just go to the chemist. Keep a modest weight gain in perspective: in other times this condition would have killed you.

Hi and welcome Rosemaryy,

Some great advise above! I'm glad you understand very well why you have put on a few kilos at the start of your treatment.
I myself am a LADA (late onset type 1) diabetic and lost loads of weight before diagnosis. Once i started insulin i have maybe put 7 kilo back on, at the moment i'm even slowly losing weight again.

Good luck, all the best

Rosemaryy said:

Thank you @helensaramay and @Diakat I'll definitely talk to my doctor about this. Thankfully i have my lovely mother who also has type 1 diabetes. She told me she experienced the same stuff i am going through right now, and that my body will eventually stabilize. My body was basically starving before my diagnosis (even though i never lost any weight) and now that i have the right treatment, my body is just absorbing anything and everything.
Otherwise i'm doing pretty okay. I've gotten used to all the injecting and counting carbs and all that very quickly, as i have my mom to help me. I guess the mental part of it all is the hardest. The news definitely didn't help my depression and anxiety. But i'm starting to feel a lot better now that i'm taking insulin. I have a lot more energy and overall feel a lot healthier!

Thanks @Jaylee , Definitely

Hi @kitedoc
Thanks for all the useful information!
Hypos are certainly a scary thought, thankfully i've never had one yet. Hopefully it will stay that way with injecting the right amount and eating right.

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Hi @Rosemaryy, No one I know on insulin has not had a hypo at some stage. Best to know how to identify it, and inform your family, next of kin etc about what to look for and how to treat it. That is, what is important is to recognise, treat and try to work out why it happened and how to prevent another occurrence!
I always, always carry glucose jelly beans or gluco-tabs with me wherever. Daring oneself to go without having an emergency supply of glucose is tempting fate and one's well-being.
I find it is better to treat anything unusual as a hypo if you are not sure, and cannot quickly check your BSL first. I never delay minutes until you can check your BSL as later I may not be as able to test and treat myself.
Shops etc have sugary things like drinks, juice, lollies (preferably soft lollies) if you run out of your own supply so I always ensure I have some spare coin and cash in case.
Also for driving a car there are regulations or policies about what BSL is adequate before you set off and it is important to be able to recognise a hypo, and not drive or stop ASAP to treat it. Most sites say that about 90 minutes is needed to recover from a hypo mentally (not just BSL-wise) before staring out driving again, stepping on a ladder, using a sewing machine or kitchen appliance or food preparation utensils, walking across a busy street etc. They can be scary BUT they are part of one's life on insulin, better the devil you know ...

Rosemaryy said:

Hey @Scott-C Thanks for replying

That's what my doctors also told me, that most of the weight is just my body getting hydrated again and overall getting normal again. It's so difficult though. I can hardly think about anything else right now, other than my weight. But i'm trying to stay positive, and take things slow. Focusing on the right treatment right now should be my top priority.

I actually watched a documentary a few days ago about diabulimia. People with type 1 diabetes that have anorexia and stop taking insulin in fear of getting fat because of it. Most of them had eye problems, nerve damage etc. And i definitely learned that losing weight is certainly not worth all the damage to my body.
Just gotta stay strong!

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That's so true! At my last visit in my diabetes clinic there was a young girl, a diabulimic patient. She was in a wheelchair because she was so weak, looked so haggard and frightened. She also has severe mental health issues and was even behaving aggressive towards her father and her mental health nurse.

I'm a bit shorter than you, but about the same weight currently. I gained about 10 kilos very quickly once I was put on insulin in February. It was explained to me that my body was quickly grabbing everything going to rebuild the vital fat my body needed. (Why we can't lose the non-vital fat in that stage is a bit beyond me, but I'd already caused enough clinic chaos and decided I'd better behave...)

I've certainly not put on all I lost pre-original Type 2 diagnosis 3 1/2 years ago, (30 kilos) then the LADA (another 30 kilos) which was my biggest fear. No way was I going back to being morbidly obese ever again, but the fear of that with the speed it went on was huge. It receded once I realised I'd stopped putting any more on! (Not helped in my case by the massive amount of congratulations I was getting from the medical profession for losing the weight, then the massive scolding I got in the clinic for not doing anything about it before I was referred to them. It took all my willpower not to say I wasn't the trained medical professional, when I'd been telling them I'd not been trying to lose weight wasn't it their call to investigate? To be fair to my new GP, he did refer and he did ignore due process when it was clear Type 2 med regimes were not working. But the previous GPS?!!?Ahem. I digress.)

So, whilst I'm not entirely comfortable with the extra 8 - 9 kilos I'm currently carrying, I'm concentrating on the more important fact of getting the balance of insulin, blood sugars and the walking activities right for my health, and in the last few weeks, the weight has been very slowly dropping down again.

Rosemaryy said:

Hypos are certainly a scary thought, thankfully i've never had one yet. Hopefully it will stay that way with injecting the right amount and eating right

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One of the things my doc told me when I was dx'd was that the dividing line between a good level of 5 is kinda close to hypo land sub 4, so the occasional mild hypo is pretty much inevitable and in a way is a sign of relatively good control.

The more dangerous thing to avoid is the sort of thing some people get into: deliberately running way too high to avoid hypos altogether. They feel fine but in the longer term damage is being done to nerves and small capillaries, leading eventually to complications.

A deep low hypo can certainly be a terrifying thing - I had some scarey ones in my twenties, but it was mainly because I was a young lad out on the town having a few beers until the early hours. Alcohol isn't ruled out, but be careful with it in the early months.

Confusion of thought is common with a deep low, because the brain is not getting enough glucose to work properly, but it's worth training yourself to keep a space at the back of your head which says, "ok, this is a bad hypo, it will be fine once I get some fast sugar in my mouth."

If your team hasn't mentioned it yet, ask about libre. It's a type of continuous glucose monitor which you can use to see levels in more or less real time, and there's transmitters you can buy quite cheaply (about $85 to $160 depending on type) which makes your phone ring if dropping too low while sleeping. It's an extraordinarily good way of avoiding bad hypos - I've only had one bad one in 2 years and that was just because I snoozed the alarm and went back to sleep. They really do give a lot of peace of mind on the hypo front, and do a whole lot of other things you can use to improve control. Some parts of the country do them free on prescription but it's a postcode lottery.

Hi. What is the typical daily total of carbs you eat? I suspect it may be s bit higher than you need to keep the weight under control? Do you carb count the NovoRapid i.e. adjust it for the carbs in the meal? Can I ask what you meant by adding to your carbs at a meal if you need to fix? I wonder if you mean you add to your carbs to match a fixed dose of NovoRapid? You be carb-counting and not adding carbs to match the NovoRapid.