Teenager with Type 1 diabetes and anorexia

[simonritch]

Hello, I'm new on here and just looking for any advice etc. My 16-year-old daughter had had Type 1 diabetes for four years and is on a medtronic pump. She has been managing her insulin fine and if anything her blood sugar levels have been on the high side. But over the past four months she has developed anorexia and is continuing to lose weight which is deeply upsetting and pretty traumatic. She is following a meal plan but still losing weight. The diabetes team and mental health team are a bit baffled. Her blood sugars are very low and has many hypos daily, far more than she had in the past. She won't treat them with glucose etc for fear of putting on weight, She is not bolusing for carbs as she is always low. She even had noodles the other night with 40 carbs and didn't bolus and bloods did not go up. She even took pump off for eight hours in night - in case she hypoed - and they hardly went up. This has our diabetes team baffled. I've a hunch the diabetes or and insulin is someone causing weight loss. She has Googled that insulin causes weight gain and is now terrified of it? If anyone has any experiences etc or advice, I would truly welcome it. We are at our wit's end. Thank you.

 

[Thebearcametoo]

She needs specialist help rather than guesses from strangers but I do wonder if there’s a combination of her hormones settling as she’s now through puberty and her weight loss meaning her insulin needs are much less and whether going back and doing basal testing would be the best first port of call to see what her insulin needs are right now

http://dwed.org.uk/ may be able to give you some more info or help

Is this an exam year for her? Pressure (even if it’s just from herself) to do well is common and in the midst of a pandemic everything has been so unsettled. It’s a common age for the reality that you’re close to moving onto the next step of life which isn’t the familiar home & school set up to sink in and that can cause a feeling of loss of control. Mostly eating disorders aren’t actually about the weight but about a lack of feeling of control in other areas of life so getting support for that may lead to more improvement and your team will help with the mental health side of things as much as they can.

I hope you can find the right support for her and you.

 

[Docb]

Hi @simonritch and welcome to the forum. Having first hand experience of supporting somebody with anorexia I can understand where you are. Adding T1 into the mix just makes things more difficult. The only though I have for you is to press the system as hard as you can to get professional help for the anorexia. There are as many myths and misunderstandings around anorexia as there are around diabetes and you have to get past general medical practice to get out of that mire and get access to those with real understanding and expertise.

 

[Flower]

Hello and welcome @simonritch

DWED Diabetcs with eating disorders - is an excellent organisation helping with eating disorders and diabetes details here http://dwed.org.uk/

Eating disorders are sadly common in people with insulin controlled diabetes this information from Diabetes UK is useful https://www.diabetes.org.uk/guide-to-diabetes/emotions/eating-disorders

You can self refer to FREED from the above link which helps young people dealing with an eating disorder and T1.

From my experience of living and dealing with Type 1 diabetes and an eating disorder 'diabulimia' it is an incredibly complex and secretive illness. There is help out there but it is not easy to find with specific Type 1 help. The thing I can think of from my experience is the bulimia part of the illness which caused my blood sugars to drop very low as I had no food in me. I'm sorry for suggesting it as it is such a distressing, frightening illness but it does often go hand in hand with anorexia. I know that's how I avoided hospital sometimes with my blood sugar crashing from high to low.

I hope you are able to get some help and your daughter is able to speak about it. That is a very hard thing to do but so necessary. Best Wishes.

 

[Inka]

Such a difficult situation for you @simonritch It’s an incredibly hard thing to deal with even without the Type 1. I second the suggestion of DWED.

You say she’s following a meal plan but still losing weight. This could be because her blood sugars are high (but you say they’re not high?),it could be cause she has something affecting her absorption of the food, or it could be that the meal plan isn’t being followed as closely as thought or is being amended by strategies used by people with anorexia.

It makes me so sad when the myth about insulin causing weight gain is spread around and taken on board by people who might be vulnerable to this lie. I’ve had Type 1 almost 30 years and I’m very, very confident that the weight I am now is the same weight I would have been without Type 1. All the insulin has done is replace what’s missing from my body and allowed me to eat what I would have eaten if my own insulin-producing capacity hadn’t been destroyed.

 

[Flower]

Does your daughter use an Abbott’s Libre glucose sensor or a continuous glucose monitor such as Dexcom that gives around the clock glucose levels and data? The Libre 2 has alarms for highs & lows which is very useful in preventing hypos. It will show what is happening & when to her blood glucose if your daughter is able/wants to use one.

FreeStyle Libre 2 | Glucose Monitoring System - Diabetes Care

Discover the FreeStyle Libre 2 flash glucose monitoring system. Advanced and easy to use, it offers an innovative approach to diabetes management.

www.freestylelibre.co.uk

 

[AndBreathe]

@simonritch - As someone who lived with anorexia at a point earlier in my life, I appreciate how difficult this time is for you family. It's a horrid condition, even without the added complexity of diabetes.

What sort of meal plan is your daughter following? Do you eat together as a family?

How is your daughter testing her blood sugars? Is she doing finger prick tests, or something else?