Three months into T1D life...

[clarita84]

Hi all,

I've spent the weekend browsing the forum, and decided to join up today. You all seem like a jolly decent bunch.

I was diagnosed at the end of May, after being taken to hospital in DKA. Currently on fixed Novorapid (8,8,6) and Lantus (20).

I was alright at first, then had a huge set back when my nurse told me I'd been misdiagnosed and was actually T2 - this despite me being significantly underweight, always active, always having lived a healthy lifestyle. I called her back to confirm and she said yep, absolutely T2, you will come off insulin and then we will put you on tablets. Couldn't speak to a consultant, my GP is as useful as a chocolate teapot etc...At first I felt a bit of relief, but then I started to feel incredibly worried about what on earth had gone wrong for me to get T2. I restricted my carb intake and started to feel horrendous. No energy, so down. It was a month before I could speak to any other HCP. When I did speak to the consultant, she didn't even know I'd been told there was a misdiagnosis, and said it's absolutely T1. So I was again relieved, but left to deal with the diagnosis for a second time round.

That was about three weeks ago, and I've upped my carbs again - though still nowhere near the amount I ate pre-diagnosis.

I'm stuck in a fear of eating / loss of appetite loop. Eating feels very restricted, I can't snack. But for the past fortnight, nothing really appeals to me and I'm genuinely having to force food down. I've not had a decent nights sleep since two weeks after I came out of hospital - so mid June. I wake up every hour, spend long periods awake etc. I feel so down, I'm crying every day. I'm exhausted, my back hurts...

It's not even the diagnosis that I'm upset about - it's the complete lack of care and support from the diabetes team. I don't need them to hold my hand, but I did need them to a)not mess me around over my diagnosis and b)listen to my concerns about restricted eating (they know I have a history of disordered eating).

Sorry this isn't the most cheery first post...I suppose I needed to get it all off my chest. I have a wonderful supportive partner and family, and luckily I am seeing a psychiatrist who specialises in T1D this week, too.

 

[NotPink]

Gosh you really have been put through the mill. So sorry for how you feel as it cannot be easy. I am T2 so would not dare to talk of T1 as I don't know enough about it. There are lots of lovely T1 folk on these forums who will help you through this and answer any questions. You have a lot of symptoms to cope with and I am giving you a big hug for being so brave. Take care now and support is on its way.

 

[Bruce Stephens]

I have a wonderful supportive partner and family, and luckily I am seeing a psychiatrist who specialises in T1D this week, too.

That sounds more positive. In the longer term, there's nothing to stop you from having snacks outside meal times (indeed we just had a thread about doing that). Sometimes it's recommended (if you're about to do some unplanned exercise, for example, like a walk after lunch).

But (as with many things diabetes-related) it takes a bit of experience or (the first few times) support from your team and it sounds like you're not getting that.

It's normal not to get great direct support from your GP (T1D is rare enough compared with T2 that they're unlikely to have that much expertise), but they should be receptive to try and get you better support from a specialist team: having a nurse just switch you away from insulin like that sounds obviously unacceptable.

 

[cameron]

Hi and welcome to the forum @clarita84.

I'm so sorry to hear about your experience since diagnosis!

Have you been able to see a dietitian since being referred to the hospital? Are you still in regular contact with diabetes specialist nurses? If not, I'd really recommend pushing your diabetes team for more support and advice, because you do need it at the beginning. There's no shame in that. You will eventually get the hang of things, diabetes shouldn't prevent you from enjoying food and having a good night's sleep.

Good luck with your appointments with the psychiatrist, hope you get the support you need. 🙂

 

[EmmaL76]

Hi there. Don’t worry your not on your own. I have a very similar story to yours. Originally I told was type 2, I’m also not overweight in fact the opposite. I also have a history of disordered eating and found cutting the carbs left me then and now extremely exhausted. I don’t sleep well, but I never have. A couple of months after type 2 diagnoses I had some test which showed positive for just one of the antibodies for type 1, although I have insulin resistance of a type 2. I couldn’t seem to get the insulin right and was going to low in small doses too often. I couldn’t stay of the toilet with the metformin so currently I’m managing by diet alone. My DN suspects I was a type 2 all along now but am waiting for appointment with consultant which could be a while away. I’ve found the uncertainty very hard, I don’t feel like myself at all. It’s great that your family are supportive as that must be a big help as the mood swings if your anything like me are horrendous. Do you know what your hba1c score was? Do you know if they have run any specific test to pin your diabetes down? I hope you get your answers… they tell me it’s nothing I have done wrong but I’m not sure about that.

 

[Inka]

Welcome @clarita84 🙂 Sorry to hear you’ve been messed around with your diagnosis. That just adds to the stress of it all. Being diagnosed with Type 1 is a big emotional shock and all the changes to daily life do take a while to get used to. I think if you’ve had disordered eating in the past that can get entangled with everything too.

What helped me was to know that it wasn’t my fault, and to accept that perfection isn’t possible. Nobody gets perfect blood sugars all the time. We just aim to do the best we can.

The recommended diet for Type 1 is the same diet recommended for everyone (Diabetes U.K. had a poster saying this years ago). I was told the only thing to avoid was sugary drinks - unless I was treating a hypo or exercising. I see you’re on fixed doses of Novorapid at the moment - were you told how many carbs to have for each meal? You should have been. Are you being helped to carb count and adjust your insulin according to what you’re about to eat? That gives a lot more flexibility obviously.


Type 1 is a condition where you have to become your own expert. It does gradually get easier with experience. Two great books about Type 1 are:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

 

[clarita84]

Thank you all for your thoughtful replies.

I wasn't told how many carbs to eat with my meals, just to "eat a healthy diet". There is no sign of an appointment with a dietician, I'm on a long waiting list, and until I see them, I apparently will be stuck on the fixed doses. This is what makes it all so frustrating. I've started doing the BERTIE course online.

My DSN was switched after the misdiagnosis misinformation, and I have an appointment with my new one later this month.

@EmmaL76 urgh, I really feel for you - the uncertainty is definitely worse than the actual diagnosis. I hope you get some proper answers soon, and they're able to sort out your medication. You're right...the mood swings are the worst, and I don't feel like myself either.

 

[Inka]

The ‘eat a healthy diet’ advice isn’t adequate because it assumes people eat the same amount of carbs each day in a tradition ‘meat, potatoes, veg’ way. Many people simply don’t eat like this. I really don’t understand why they do this. I was diagnosed many years ago and was on fixed doses initially but even then I was told how many carbs to have for each meal. It made things so much easier.

You can still work it out yourself though, presuming your basal dose is correct. Doing the BERTIE course should be a great help.