5 months post T1 diagnosis, so much weight gain

[Rybing]

Hi all,

After a serious week in hospital in March and being diagnosed with T1D, coma, high keytones, drips, lots of insulin, lots of metformin and big changes to my diet I am now 5 months down the line.

I have put SO much weight on! I lost 2 stone when i was at my sickest and after my hospital ordeal some 5 months later I must have put on about 3 stone!! I have never been so fat in all my life. I follow a good diet but often have hypos and the snickers, coke helps but I cant work out why I am now so fat! Its horrible.

Any reason for this? Any tips?

Also as I was not diagnosed for some years, the docs told me that I must have had blood sugars in excess of 30 for some 4 years. Is this why my legs are so sore, cant feel my left foot much, tingling skin and all the hair has fallen out of my lower legs. Chest pain, kidney pain and feeling pretty rotten.

I have an appointment on 26th but should I be worried about my leg?

Just after some words of advice really. Its so hard to get to grips with. One min my bloods are 32 then for no reason a few hours later they go to 2.6 and i go all strange.

just wanted to see if anyone can offer words of wisdom.

Thanks in advance

Ryan x

 

[Inka]

If you’ve had high sugars for 4 years prior to diagnosis, it’s likely that what you saw as your normal weight was actually not your normal weight because you couldn’t use all the food you ate. Now you are on insulin your body is working properly so you’ll naturally settle at the right weight for you if you eat a normal healthy diet.

I found it took around 9-12 months for my weight to settle. The body has been through what it sees as starvation so it takes a while for it to realise all’s ok. It also takes a while for a newly diagnosed Type 1 to learn about their insulins and control.

You say you’re going hypo a lot and having to top up with Snickers and Coke. First, try to go for the Coke, Dextro tab, jelly baby option - pretty much pure glucose/sugar not added fat and calories like with the Snickers. Second, are you counting carbs and adjusting your own insulin? Can you tell us a little more about these hypos?

Just to be very clear - insulin doesn’t make you fat if you’re Type 1. I say that not so much to you but to the casual readers who’ve swallowed that myth and have disordered eating.

 

[Pumper_Sue]

I have never been so fat in all my life. I follow a good diet but often have hypos and the snickers, coke helps but I cant work out why I am now so fat! Its horrible.

Well there's your answer 🙂
Too many hypos and def not good eating snickers for hypos either.

Sounds as if you need to reduce your insulin to stop the hypos and the extra food going in which = weight gain

Are you under a hospital team (DSN) who you could ring and ask for help and guidance?

I'm sure once your insulin dosage is sorted you will be fine 🙂

 

[Flower]

Hi @Rybing

Before diagnosis all the systems in your body will have been in turmoil struggling to get energy and you sound like you’ve been struggling for a long time with high glucose, that must have made you feel really unwell. Once an insulin supply is started post diagnosis it does take a good few months for everything to settle down and get back into equilibrium.

What insulins are you using, are you on fixed doses or if on MDI have you been given advice on adjusting your own insulin doses? As @Inka has said treat hypos with fast acting glucose- chocolate takes too long to absorb- and see if there is a pattern to your hypos where an adjustment to your insulin could be made to stop your levels falling too low.

High unchecked glucose for months pre diagnosis can cause damage to nerves- feet and legs are one of the main areas that can be affected with diabetes. Hopefully now you have been diagnosed your body will start to repair but it does take a while. Tingling and numb feet can be caused by transient peripheral neuropathy where the nerves have been damaged by high glucose levels and hopefully things will improve with controlled glucose levels although it can take a time for the symptoms to calm down and reduce. After a diagnosis you should get your feet checked annually for circulation and touch sensation.

Wishing you well with your appointment 🙂

 

[SuperBee]

You have had some excellent replies so I will discuss your lower leg issues. It sounds very much to me that you may have PAD (Peripheral Arterial Disease) where narrowing occurs in the arteries. I think you need a Doppler test with the ABPI (Ankle-Brachial Pressure Index) being measured at the same time.

 

[Thebearcametoo]

Oh bless you that’s a lot to have gone through. Given your numbers I wonder if you have been told to carb count and adjust your insulin and if so if you’ve been to told HOW to carb count. I know lots of the usual systems have been under strain with covid lockdowns etc so you may not have been given all the information you need.

And yeah, snickers isn’t an appropriate hypo treatment. When you’re hypo you need simple sugars fast. Your body needs glucose and if it has to convert other sugars into glucose that slows down the absorption. Any fat slows down the absorption of the sugars so chocolate isn’t the best option for hypos. Your best options are glucose or dextrose. You can get tabs of both at most pharmacies and supermarkets - Dextro being the easiest to get hold of but gluco tabs can be bought too, we buy in bulk off Amazon). If you don’t have those to hand then sucrose (the sorts of sugar in baked goods, sweets, coke, etc), lactose (milk), fructose (fruit) will all work and liquids help the sugars to get into your system quicker so coke or fruit juice is not a bad option for a hypo or many people have a few sweets. Milk has the problem of fats but will do if you’re heading low but not too quickly.

With type 1 management you’re aiming for your blood glucose to be between 4-10 most of the time (4-7 before meals but it’s normal to have some rise after foods). Anything over 16 (this is pre meal figures) and you should be testing for ketones in addition to testing BG. It sounds like you need a little more support in managing your levels which will help you to control your weight and may also help reduce some of the other symptoms you’re getting. And if you can avoid lots of hypos you will feel better emotionally as well as physically.

(I’m just going to add that for treating a hypo you want to have around 15g carbohydrates which is around 150ml of coke. If you over treat hypos and then go high you will end up having more insulin than your body actually needs and going hypo again and being in a cycle of extreme highs and lows. Apologies if this sounds patronising but I would rather say specifics than presume you mean a mini can of coke or a small glass when you’re actually have a full can of coke)

 

[everydayupsanddowns]

Sorry you have had such a rough time with your diagnosis, and may now be seeing some changes in the sensitivity to your feet.

Those swinging and erratic BGs must be making you feel pretty grim. And certainly repeated hypos, which can be scary, and which can result in you bouncing from low to high, and back again - the glucocoaster is no fun, and can be tough to get off.

Which insulins are you using? And have you been able to access any structured education on modern dose adjustment? This can be as much an art as a science, with perhaps more than 40 variables potentially affecting BG outcomes, but it can be really helpful to have some solid strategies and approaches behind you that help to fine tune things, and troubleshoot when things are changing (insulin needs, or you body’s reaction to various things change over time).

There are online versions of some of the courses (eg DAFNE and BERTIE) which might help if courses aren’t running in your area.

You might get some of the same techniques and tips from books like Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (relevant to T1s of all ages!), or Think Like a Pancreas by Gary Scheiner, which are often recommended on the forum.

Hope we can help and support you to stabilise your BGs a little, and reduce the number and severity of your lows (which will most likely sort out many of your highs).

Welcome to the forum!