Sleeping all the time

[lcsj]

My 13 year old daughter with T1D is sleeping all the time, it's been going on for months, in may she had bloods done to check for a few things and thyroid was borderline when that was retested in September it was fine, she's booked in tomorrow for more bloods to check thyroid, vitamin D, kidneys and Addison's disease if these all come back fine do anyone know what else it could be? Her blood glucose is normally in range just a few highs now and then, I sent her back to school this week and she's now started falling asleep in school. As soon as she's home she's going to sleep I wake her up she comes downstairs and is asleep on the sofa within minutes, I'm getting so worried about her

Poor you. What support do you have? I have a diabetic consultant and a pump specialist nurse who I can email.

I have always needed a huge amount of sleep. And, I never feel rested or fulfilled no matter how much I get.
But I'd definitely be taking her back to the GP.

I once looked after a young woman with type 1 diabetes who started to suffer severe fatigue. It turned out to be due to coeliac disease. There is a link between type 1 diabetes and coeliac, so it could be worth requesting they test for this also if they haven’t already. Fatigue was her only symptom, none of the expected gut problems. Apparently it’s often over looked as a possible diagnosis, as people expect certain symptoms, but often people don’t exhibit them.

@Oblomov20 I have the DSN I speak to and her gp have spoken with her consultant who decided what tests to do. I'm the same with the sleep but with her she is sleeping soo much she's asleep more than she's awake, Thankyou for your reply :)

@Montybojangles she got tested for that in September and it was fine. I really don't have a clue what's going on, the dr thought she could have Addison's disease but when I looked that up I really don't think it's that. I just don't have a clue what's going on. Hoping her bloods pick something up so I can get it sorted. Thankyou for your reply :)

My 14 T1 yo has v high thyroid antibodies but T4 and TSH normal - I am hypothyroid so expect she'll get it somewhen. So I'm conscious of any changes. Regardless of the results they need to look at the symptoms. If she is tired and sleeping that early something is up. How many hours is she sleeping?

@Butterfly44 she's sleeping Atleast 15 hours a day but when she isn't in school it's more 18 hours a day, I also got an under active thyroid, she is gaining a bit of weight and losing quite a bit of hair but as her hair is really thick anyway I don't know if they will even take notice of that part, I'm not sure if this has anything to do with it but she's always cold, she was saying her legs are soo cold they're stinging her but when I felt them they were boiling to touch. I mentioned that the the dr and he didn't have a clue what that could be, I just hope I get some answers as she isn't herself

Definitely sounds like hypothyroidism to me. List all of those symptoms and make a fuss till you get an answer. It's annoying having to fight for things but that's what I would do. Say it's interfering with her schoolwork and moods etc. My levels were at the top end of the range and they diagnosed me on symptoms. After time my levels went more out of range and thryroxine was increased...so imo ranges aren't always what it should be based on.

Has she lost weight? Just wonder if she's skipping her insulin to lose weight and hiding it by diluted her blood glucose results. Thats what I used to do.

And as a result I was obviously always asleep not with it because I was almost always in or close to DKA

@Butterfly44 Thankyou I will, I might ring the DSN tomorrow afternoon just to see if they got her blood results as otherwise I won't get any answers until next week when the GP got them.

@jellybeanz1212 well I thought she was gaining weight but she put a pair of jeans on earlier that were too small for her a few months ago so now I think she's lost some, She's really good with her insulin and the past few days her bloods haven't gone above 8

That's good to hear. Was just trying to rule that out. I know as a type 1 I'm tired a lot but at 13 very abnormal. Has she changed insulin brands? I can't take Levemir as makes me have migraines and very tired.

Has she been checked for anaemia ?

Don't let this drop OP. Push, and demand. I can sleep for England and could easily sleep for 12 hours, at any given moment, including right now.

I hate, with a passion, that this is always dismissed as a casual side effect of having diabetes.

As is everything else! So it would seem!

Don't put up with this though. She's 13. I was living a semi-normal-13 year olds life, at that age. So should she be!
Good luck.