New T1 member

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JennyAB

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My name is Jenny and I have just been diagnosed with T1 completely out if the blue!
I am a melanoma patient and am being treated at the Marsden Hospital. My treatment is a type of immunotherapy drug which aims to ramp up the immune system enabling it to destroy the melanoma.
Last week at the hospital my glucose levels went from 5.2 three weeks before to 19. Cutting a long story short Monday saw me in a very bad way at the A&E with ketoacidosis and subsequent diagnosis of T1. Discharged yesterday and feeling so much better!
Theoretically this could be a side effect of the treatment and does seem too much of a coincidence, but there is a familial link - my six year old grandson has been T1 for three years and my brother's son has T1 and my grandfather was T 2. One doctor suggested that I may therefore have had a disposition to develop the disease and the immunotherapy has brought it on sooner? Who knows?
I am now following DAFNE and trying to get my head around everything!
Sorry for long introduction but my story is a bit complicated!
 
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Hi Jenny, welcome to the forum 🙂 Sorry to hear about your diagnosis, it does sound like you have a genetic predisposition that may have been triggered by your treatment. Glad to hear that you are feeling much better after your diagnosis - I was in a similar state, and it is amazing how much better you instantly feel after you are getting the insulin you need! 🙂

There is a lot to take in at first, but as long as you get the basics the rest will come with experience over time. Great that you are straight onto DAFNE, some people have to wait for years (unnecessarily, in my opinion!). I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, it will really help explain all the things you learn then promptly forget 🙂

What insulin are you on? I hope that the melanoma treatment is going well for you. Please ask any questions you may have and we will be happy to help out 🙂
 
Hi Jenny

Sorry to hear your bad news but welcome to the forum! Lots to get your head around at the moment, but it does get easier with time. In the meantime if you have any questions just ask away, we are all very friendly and there is always someone who can help, whatever you ask!

I think you might be right about the reasons you have got T1. I always understood that you don't inherit the condition itself, you inherit the tendency towards it and that it takes some sort of external event to trigger it. I don't think people say that any more, and certainly some people get it out of the blue with no family history at all, but it holds true in my family! My mum has been T1 for 47 years, my daughter has been T1 for 2 years, my brother and I do not have it (or his children yet - fingers crossed for them!). In my daughter's case she had a nasty virus and was then diagnosed T1 7 weeks later so we think that was her trigger. In my Mum's case she thinks it was the shock from my dad having a motorbike accident which nearly killed him. It sounds very likely to me that your medical treatment has triggered yours!

Anyway enough about me, let us know how you are getting on and remember that no question is too silly, we've all been there before and had the same questions 🙂
 
Hello and welcome Jenny 🙂

I'm sorry to hear you have been diagnosed T1 on top of everything else. It is a very steep learning curve at first but slowly things start to fall into place. Following DAFNE will allow you to get some flexibilty with eating and insulin dose adjustments.

This forum is very friendly and supportive with lots of experience in dealing with all aspects of diabetes. Good luck starting to get your head around things 🙂
 
Welcome Jenny. Glad to hear you are feeling better already. Lots of lovely people on here, you've come to the right place! 🙂
 
Welcome to the forum jenny. I am another jenny or jen. Bessiemay was an old dog of ours and that was the first user name I could think of.

It's nice to know you are feeling better and I hope you continue to improve. Lots of help and support on this forum.
 
Bessiemay said:
Welcome to the forum jenny. I am another jenny or jen. Bessiemay was an old dog of ours and that was the first user name I could think of.
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I thought maybe you were a country n western singer, Bessiemay!

Welcome to the forum, JennyAB. Sorry to hear about all your medical problems. You sound very upbeat tho! Good luck taking your first diabetic steps.🙂 Let us know how you're getting on.😱
 
Bloden said:
I thought maybe you were a country n western singer, Bessiemay!

Welcome to the forum, JennyAB. Sorry to hear about all your medical problems. You sound very upbeat tho! Good luck taking your first diabetic steps.🙂 Let us know how you're getting on.😱
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I thought maybe you were a country n western singer, Bessiemay!

Ha! I don't think you would want to hear me sing.

I think usernames are interesting though. Some like northerner and codepod and jalapino are obvious but I wonder what's behind some names.
 
Yeah, some names are really interesting. 😎 DeusXM, for example, if you're listening, how did your name come about?😛
 
Actually-we could start a new thread on this- delb t is a ridiculous nickname my OH started years ago and that's what he calls me![ Im an Elaine] so where that's come from Ive not a clue!
Welcome to the forum Jenny
 
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Well I wish I could have come up with an interesting one, but nothing sprang to mind, I don't have an obvious nickname that everybody calls me so I just used my name and year of birth. BORING!

I suppose I could have used our rabbit's name (Jessie), or there was a lad who I used to work with who constantly called me Mustang (after the song Mustang Sally). That would at least have been a little more interesting! 🙄
 
Welcome Jen. Sounds like you have few things to sort. Good luck 🙂
 
Thank you for the welcome! Certainly a lot to take on board! My SDN is just wonderful and says it is very early days and at this stage we are looking for patterns to help with dose adjustments. I am taking Levemir in the evening and Novarapid.
I appreciate everyone is different but how long does it take to get into a pattern of sorts???
 
JennyAB said:
Thank you for the welcome! Certainly a lot to take on board! My SDN is just wonderful and says it is very early days and at this stage we are looking for patterns to help with dose adjustments. I am taking Levemir in the evening and Novarapid.
I appreciate everyone is different but how long does it take to get into a pattern of sorts???
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I remember calling the DSN with my readings for a couple of weeks, with her suggesting adjustments to doses, before I sort of picked up how to do it myself. Still a bit of trial and error over the following few weeks, with quite a few 'Aha!' moments, but then started to settle into it more confidently. Still learning all the time though, and realise now after 6+ years of doing it that my efforts back then were still quite crude compared to now - you're learning all the time and things rarely stand still for a long time. Experience makes things more predictable though, and it's important to always look for the possible reasons for things not turning out quite as planned so you know to look out for them the next time 🙂

Good luck, and remember, we are here to help 🙂
 
I drive my nurses up the wall because I never have any sort of pattern. Being self employed I never know what I am doing on a day. Up scaffold one day another day sit on the floor doing skts. I really enjoy missing lunch & sometimes don't have time. Good luck with your patterns 🙂
 
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