# 'Old' Newbie Type 1 - help



## Charlotte (Dec 26, 2010)

Hi. I'm new to this Forum though not to Type 1 - I've had it for 24 years. I've never found it got any easier and I've had a real struggle this Christmas. As ever, I've been testing 8 times a day, but I just swing endlessly from highs of 17+ to bad hypos and feel totally out of control. I'd love to get a bit of support from others with type 1. I don't feel I get any help from my so-called 'health team'. They're only interested in my hba1c readings and since they're OK they insist my quality of life must be OK and if it's not it must be due to depression so I should take anti-depressants. It's true I am depressed, but I'm depressed because I don't get any help from anyone and never get a proper night's sleep because of the endless highs and lows. And I want help with that, not a pill to shut me up. Can anyone identify with this or am I as alone as I feel? Sorry to be gloomy at Christmas, but it would be so nice to get a bit of support.


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## Northerner (Dec 26, 2010)

Hi Charlotte, welcome to the forum  Very sorry to hear of the problems you have been having. You are certainly in the right place for support, with many people who share your experience and can understand how you feel. What sort of insulin regime are you on? Do you carb count? Has a pump ever been considered? The high levels certainly won't be helping your moods. Also, you shouldn't feel as though you are supposed to know everything just because you've been diagnosed a while - so please ask any questions you may have, nothing is considered 'silly'. 

As you say, the Hba1c can't be the only indicator of how well you are doing, so your team need to understand that there is much more to diabetes than that. I look forward to hearing more from you, and hope that, with our suport, you can turn things around in the year to come.


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## Robster65 (Dec 26, 2010)

Hi Charlotte. 

Your story is familiar to me and to many others to lesser or greater degrees. As you say, many health pros see a 'good' HbA1c as an indicator of good control rather than a lucky average.

Do you carb count at all ?

It is one of the secrets of regaining some control and with you testing 8 times a day already, you'll be able to gradually narrow down your swings by matching insulin to food and avoiding some foods that make you spike.
I've been diabetic for 32 years and I've learned most of this since joining a few months ago.

Rob


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## alisonz (Dec 26, 2010)

Hey Charlotte, have to say I know what you mean about "support", although I'm a newly diagnosed T2 all I got from my doctor was "you are diabetic here's your tablets and a print out" and that was it. Since joining here I have had such a lot of advice and the people are well friendly, so use us xx


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## Ellie Jones (Dec 28, 2010)

Hi Charlotte

Oh yes I can indentify with what you are saying... 

I've done the 'I ain't taking anti-depressents' routine on many occasions in the past, and tersely told a doctor, that depressed I wasn't fed up to the hind teeth I was,with the diabetes sort out the diabetes, problem solved I'm a happy bunny!

I see that you've been diabetic similar amount of time as me, this is helpful as you should be able to remember our original carb exchange system we used, the basal/bolus regime (or carb counting as some call it) is really an expansion of this, a lot more flexible and we get to determin the carb count and dosage required taking on board, how food reacts, exercise and other factors that make up the equation of how much insulin to maintain control!

You can go a long way to finding your control over the next year, we all here to help with issues, explain some of the little factors that hinder or help control that our team often miss, information how to handle teams so that you get the most out of them, if you decided your best move forward is an insulin pump, then we can point you in the right directions, with how to work out data explaination, people who can aid with difficult consultants/teams or PCT's when it comes to funding or point you to an pump friendly consultant (pump fighting I'm pretty good at, spent 3 years battling with my not so pump friendly clinic)...

I do suggest that you get yourself one of two books,  Using insulin by John Walsh (I have this one) or Think Like A Pancreas (can't remember the author) both available on Amonzon...  They will give you a wealth of information about control, in's and out's of what effects control etc, both very user friendly..  And ask us lots of questions etc as we have a wealth of knowledge between us...

Here to looking forward to a brighter 1011 and future..


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## FM001 (Dec 28, 2010)

Really annoys me when hcp think that a good hba1c is a indicator of good blood glucose control.  Do you carb count with every meal and match your insulin to suit, is your basal insulin correct and are your hypo's a consequence of over-correcting hypers between meals?  Without knowing a little more information it is extremely difficult to say what is causing the swings in your blood glucose, but please don't worry as we have all been here at some time point in our time with diabetes.


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## shiv (Dec 28, 2010)

Hey Charlotte welcome to the forum  I'm just behind you with almost 20 years of type 1 under my belt.

Sorry to hear you are getting so little help - my team are the same. Which team are you under? What regime do you use?

Shiv x


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## Charlotte (Dec 29, 2010)

Hi Everyone

Thanks so much for all your nice messages - they made me feel a whole load better. Yes, I do count my carbs, and 'count' my exercise too, etc etc though they don't do a 'Daphne' course here. But sometimes my blood sugar levels just have a life of their own - like at Christmas when they suddenly shot down for 2 days then shot up again,for no apparent reason other than to muck up a happy occasion.

I did ask about a pump once but was told they would only give them to people who need third-party assistance with hypos. I live in Scotland, and I gather the pump situation is worse up here. 

I was interested to hear I'm not the only one who's refused to take anti-depressants, Ellie. I'm sure they have their uses, but not for making someone who has night-time hypos sleep at night... I'll try to get the books you suggested. I've got Dr Bernsteins Diabetes Solution - full of useful facts even if you don't go for his low carb diet, which I don't.

It's the hidden-ness that gets to me most. There's noone to discuss it with, share it with. It's like this other secret life that noone knows anything about, and you can never forget about it. But thanks to you all again - it's good to know you're out there. xx


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## Northerner (Dec 29, 2010)

We've got quite a few Scottish members here  There's a Scottish pump awareness group here which might be able to help you get a pump:

http://www.ipagscotland.org/

This forum was founded by a person who has had Type 1 for over 30 years but had never met another person with Type 1 - it's now full of all ages and experience with diabetes, so it's a place where you can be sure that people can relate to how you feel


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## Nicky1970 (Jan 1, 2011)

welocme to the forum


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## Steff (Jan 1, 2011)

Hi and a warm welcome to the forum.


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## shiv (Jan 1, 2011)

Charlotte - being in Scotland does make it much more difficult to get a pump. Rachel (someone remind me of her username?!) will be able to help you on that one - she is from Scotland and has just had her first child and I think will start pumping soon.

Also check out INPUT: http://www.input.me.uk/scotland/ - get in touch with them and explain your situation and story. They are incredibly helpful and will help in whatever way they can.

The best thing I can think to advise for now is to keep good logs of everything - insulin intake, carbs, BG levels, exercise, etc - so that when you do see your team you can 'prove' to them what you are telling them.


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## Andy HB (Jan 2, 2011)

Hello Charlotte, I just wanted to welcome you to the forum.

I've found it to be a great place for support, I hope that you do too.

Andy


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## Charlotte (Jan 4, 2011)

Many thanks indeed for all your greetings and suggestions. Perhaps 2011 should be my year of the Battle for the Pump. I'll let you know how I get on. I do keep meticulous records, but when health people look at them they just use them as ammunition against me. I'm trying too hard, etc etc. They have this convenient philosophy (for them) that if I just stopped thinking about it it would all settle down nicely for ever and ever. My consultant doesn't seem to believe in pumps, but I'll see what IPAG can suggest. I've just taken a look at their site, and am about to start lobbying my MSPs to see if I can get them to sign IPAG's current Motion to the Scottish Parliament for more pumps. I was horrified to see their World Pump Usage chart - it says it all. We are supposed to be moving to England at some point and are beginning to think a supportive NHS area should be one of our criteria, so any suggestions would be very helpful.

I was interested in what you said, Northerner, about the founder of this messageboard. Since Scotland has such a high incidence of Type 1 (3rd highest in the world, according to the IPAG site), you'd think I'd be bumping into Type 1s all over the place, but I only know one other!


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## Northerner (Jan 4, 2011)

Great stuff Charlotte, hope you can set the ball rolling  You can't win with some consultants - either you try too hard or too little! There are some good ones around though, so hopefully you will be able to find one when you move, if not before.


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## everydayupsanddowns (Jan 4, 2011)

Emma (bigpurpleduck) is a pumper from Fife. Might be worth picking her brains about how she managed it.


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## everydayupsanddowns (Jan 4, 2011)

Sorry! Should have said, 'welcome' from me too. Just read back through the thread and many things seemed quite familiar. 

Just wondering, as I only discovered them this year and they have made a big difference to my understanding of previously 'unexplainable' highs and lows, whether you have come across the following:

Basal testing - my basal needs are nothing like as fixed as i'd thought for the last 20 years. And just a unit out can wreak hypo or hyper havoc. Rather than running full-blown tests now I can usually spot the symptoms and make informed adjustments, but getting the level right to start with was a massive help

Dawn Phenomenon and Somogyi (sp?) Effect. My liver loves to mess with my head by building a pattern of behaviour dumping extra glucose for days/weeks and then suddenly taking a day off!

Good luck with your push to get D by the scruff of the neck again. Brilliant support and help here.


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## Glenn (Jan 5, 2011)

*7 wk old type1*

Hi Charlotte
    Sorry to hear you are having so many problems. i have only been type 1 for about 7 wks. not much point me trying to help you, but here is a reminder, i have no choice at the moment but to do things to a strict regime ie: same time every day without fail. i know this is basic for you but sometimes people forget or ignore the basics. Please don't think i am patronising i would not wish to offend you. my levels have been really good untill xmas, but hey they went to rat **** over xmas. i dont know how to carb count and don't know what a (pump) is. but maybe if you go back to basics it might help. Happy New Year and good luck.


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## Charlotte (Jan 7, 2011)

Many thanks for all your welcomes and comments. Great to have discovered this site. "My liver loves to mess with my head," describes it perfectly Everydayupsanddowns. I suspect your liver is the same as my "evil gremlin" - but we'll get the better of them yet...


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## Emma Jane (Mar 17, 2011)

Charlotte said:


> Hi. I'm new to this Forum though not to Type 1 - I've had it for 24 years. I've never found it got any easier and I've had a real struggle this Christmas. As ever, I've been testing 8 times a day, but I just swing endlessly from highs of 17+ to bad hypos and feel totally out of control. I'd love to get a bit of support from others with type 1. I don't feel I get any help from my so-called 'health team'. They're only interested in my hba1c readings and since they're OK they insist my quality of life must be OK and if it's not it must be due to depression so I should take anti-depressants. It's true I am depressed, but I'm depressed because I don't get any help from anyone and never get a proper night's sleep because of the endless highs and lows. And I want help with that, not a pill to shut me up. Can anyone identify with this or am I as alone as I feel? Sorry to be gloomy at Christmas, but it would be so nice to get a bit of support.



i know exactly how you feel. i feel upset and depressed quite often and i dont know who to turn to. ive told my mum but she doesnt seem to know either. does anyone else know???


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## chrismbee (Mar 18, 2011)

Hi Charlotte and welcome from me too 

Like Robster, I had diabetes for many years before joining this forum and I have already learnt loads of new stuff.
Totally sympathise with your suggested frustration about HCP's - sometimes it seems that they're still operating from what they were told many years ago!  The power of this forum is that you have links to useful, up-to-date info and thinking as well as the personal experiences of many in a similar position to yourself.
Final thought - whilst it's commendable that you test a lot, it is important to analyse the results in a logical way and adjust your regime, in an effort to improve things.  There has been much discussion on here about testing (frequency and usefulness) and it is easy to just get into a routine of looking at the results without thinking what they actually mean.
Ask loads of questions - there'll always be plenty of replies, intended to help you.
Good luck


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## Robster65 (Mar 18, 2011)

Emma Jane said:


> i know exactly how you feel. i feel upset and depressed quite often and i dont know who to turn to. ive told my mum but she doesnt seem to know either. does anyone else know???



Hi Emma Jane.

It is something that a lot of diabetics, young and old, find to be a problem.

If you could tell your GP about how you're feeling, they can help you with coping with your feelings and maybe find you a specialist to talk to if need be.

Rob


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## chrismbee (Mar 18, 2011)

I was on anti-depressants for a while - my GP was fantastic in explaining that their job is to address chemical inbalances in your brain, which may prevent you from seeing stuff straight.  They are NOT a sign that you are crazy .....


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