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Type 1 Diabetics! Want to encourage each other trying to get better control?

(24 Posts)
Mumbledore Mon 01-Jul-13 13:13:23

I have got very lazy with recording my readings and being on top of things, and my HbA1c has gone up to 8.8%. As I'm thinking about a second DC, I really need to get back on track. I know what I have to do, I just need to make more of an effort and not be so slap dash with my insulin doses. If anyone else is finding it tough to maintain decent levels, let's cheer each other on!

paddyclampo Mon 01-Jul-13 14:47:55

My a1c is good but I still have days where my levels fluctuate like crazy! Sometimes even though I seem to do everything I should they either drop or rocket! Stupid diabetes lol! How long have you had type 1?

Mumbledore Mon 01-Jul-13 17:15:40

Almost 8 years, since I was 21. I hate those weird swings that no one seems to be able to explain! It's a very frustrating condition the way things change all the time. I've got some diabetic cookbooks from the library today which should get me out of my rut, and the carb portions are worked out which should make things easier. I'm very motivated today!

PolytheneGirl Wed 03-Jul-13 00:08:29

Sign me up. I've been type 1 for 12 yrs. had complications with DS1 due to poor control at time of conception (unplanned but very welcome).

We are now thinking about TTC DC2 in or around the next 12 months. My control isn't great but I know I can get it almost perfect with a bit of effort and support.

let's do this!!!

Mumbledore Wed 03-Jul-13 12:00:41

Hello PolytheneGirl! Yes, let's do it. We know we can so let's help eachother along. I have made myself a chart and stuck it on the kitchen cupboard (I can't get on with the little books they give you). I'm recording my reading, what I eat and how much insulin I have. That way I can work out how much I need and regain control, hopefully. I am sort of doing the DAFNE ratio thing but I don't find it as black and white as it would seem, and my nurse agrees. I figure I can get it right for what I eat regularly this way, then take it from there. It seems to be working so far. Sorry to hear about your complications, hope you and DS are ok.

PolytheneGirl Wed 03-Jul-13 22:13:37

Wow Mumbledore. You're being very proactive. Well done. I have just dug out an blank diary to get started but think the idea of having one out on display might be a good idea too (might shame me into good bg's!)

I did Dafne way back in 08 and it has always worked well for me when I've put in the effort. Do you use the DafneOnline site or mobile app? I've just got all setup on there. I'm about to check out their diary system. Not sure how it will work.

Blood sugars are a bit high tonight after a big tea. Must have miss judged my portion. Got to get back into the swing of carb counting.
I got my A1c down to 5.7 before and I'm determined to do it again!!

Keep me up to date with how you're getting on. Keep up the good work!!

PolytheneGirl Wed 03-Jul-13 22:21:19

Also meant to say..... My DS was absolutely fine in the end but it was a very stressful pregnancy not knowing if my poor control in the early weeks had caused any birth defects. I would never have forgiven myself.

Complications were all for me. Had terrible trouble with my eyes. Couldn't see much for most of my pregnancy. First noticed it at 8wks and had 15 sessions of laser treatment and 2 small operative procedures before he was born. Unfortunately I have been left visually impaired and still having. Treatment now. But my DS was def worth it.

Mumbledore Thu 04-Jul-13 18:31:58

Oh no, that's sad with your eyesight Polythene. I hope your treatment is working for you flowers . It's such a worry about the birth defects isn't it? I'm so glad your DS was ok, as was my DD.

5.7 is a great A1c. That's a real achievement in my book, well done! I really struggle to get it below 7 but I'm trying. Massively underestimated my carbs at lunchtime and had a 14.1 reading an hour ago. Oops. But it's something to work with, so there's a positive in with the negative. It's all there on my 'door of shame'!

Hope you're getting on ok - no 14s?!

paddyclampo Thu 04-Jul-13 22:42:37

I also had to have laser in one of my eyes and also steroid injections. Have some cotton wool spots too but my doc says it's to be expected after 30 years with type 1!

Are you guys on lantus and novorapid? Have you ever thought about the pump?

PolytheneGirl Mon 08-Jul-13 00:03:05

I had no eye problems before I got pregnant and by the time I was 13 wks pregnant I was having to get my hubby or mum to walk me to work. It was a nightmare. My sight significantly improved after my DS was born but its still pretty bad.

I'm taking Lantus and Humalog.

I'm in need of a new monitor. What are you guys using? Would you recommend it?

PolytheneGirl Tue 09-Jul-13 22:18:20

Gaaaagh! I have had a hypo all evening! I've eaten just about everything in the house and I still keep dropping! I'm sure it's down to the weather. How are you girls getting on?

ariane5 Tue 09-Jul-13 22:22:59

Hi, I don't have diabetes but my dd2 (3) has and we are trying to get better control of her blood glucose levels. Keep getting unexplained highs/lows althouch her A1c was 7.7 last appt (was prev 8.2 and before that 8.8).

We are carb counting but sometimes find things just don't work out how we expect. She also has massive highs after breakfast most days.

Mumbledore Wed 10-Jul-13 11:27:11

Lost the thread! confused Found you again now.

I'm struggling with hypos too. Flipping weather!

Ariane5 it must be difficult getting it right with a 3 year old. Sounds like you're doing pretty well with 7.7. I find carb counting a bit eratic too. Will your DD eat porridge? I've been trying that to try and keep it stable in the morning seems to suit me.

Polythene and paddy - I'm off to eye clinic next week as the pictures weren't conclusive. I might be asking lots of questions next week if I need treatment!

I'm on Levemir and Novorapid - and the idea of a pump scares the life out of me!

Hope you're all doing ok.

paddyclampo Wed 10-Jul-13 23:17:23

I'm scared of the pump too! I guess the idea of being stuck to it all day puts me off!

I've been a bit low too, maybe it is the heat! I find hormones affect my levels too, has anyone else found that?

PolytheneGirl Wed 10-Jul-13 23:25:11

Hi all. Having a bad day! Still having hypos and have had to go to the eye hospital as everything is blurry, which ironically they put down to me trying to tighten my control! I could bang my head up the wall right now!!! Grrrrr! breathe

Ariane - It sounds like you are doing a really good job. I'd give my right arm for a 7.7 right now. Unfortunately highs and lows are really par for the course. Sometimes you just don't know what is going on. I have got the impression over the years that children are just very sensitive especially to exercise (I may be wrong about this?!).

On porridge - I have found I sometime hypo after porridge then go high later. I think it must be super low GI!

Mumble - good luck with your retinal screening. I'll be thinking of you.

Paddy - I have thought about the pump but with my DS being so active and a climber I couldn't see it ever staying attached. I would consider it later on though.

Did you guys hear/read about the artificial pancreas? I want one and I want one now! I always wonder how you get to be a human guinea pig?

Hope you're all getting on better than me. I'm off to sulk now.

Keep up the good work! X

paddyclampo Thu 11-Jul-13 21:31:25

I'm having a bad day too! Any of you guys ever have days where you really hate having diabetes? Sometimes I think it's harder now that when I was a kid!

ariane5 Thu 11-Jul-13 21:53:53

Everybody keeps telling us how much better dd would be on a pump. I am not sure though as the idea of it scares me too. Currently she is not making any fuss about her injections and we are managing with carb counting.

I am not sure she would like being attached to it all the time, her jabs are a few seconds 4 times a day (sometimes 5 if we have a high to correct) and as she is so accepting I don't want to change anything yet. She is on novorapid and levemir at the moment and it seems to suit her.

Sorry that you have had bad days today, I know how bad I feel when dd has a bad day it must be horrible to actually be experiencing it though,I can sympathise a tiny bit as I have hypos sometimes after meals (but not diabetes related I think it is called reactive hypoglycaemia?) Recently I've started using dd blood glucose monitor to check if I feel unwell and the lowest has been 3.2 and I felt horrendous so I have no idea how you all cope with hypos lower than that it must feel dreadful. On mon dd had a hypo and was 2.5. Lowest she has ever been was 1.6 and it was terrifying.

I am finding that the warm weather is causing her to be lower generally. Somebody told me that insulin works quicker when you are warm but I've no idea if that is correct? It seems to be for dd.

Hope you all have better days tomorrow.

paddyclampo Mon 15-Jul-13 22:09:39

Ariane5 that's exactly how I feel about the pump. Have you told the doc about going that low without actually having diabetes?

I have had another day full of lows today. Am going to reduce my lantus tonight! How's everyone else today?

ariane5 Mon 15-Jul-13 22:17:35

We have had a dreadful couple of days. Dd had to have an extra jab yest aft as blood sugar was 20.3 and we have no idea why, we worked out her carbs to insulin and thought we had given correct dose-obviously not.

Today we had the opposite problem and she has had 3 hypos, one of which was horrible and took 3 glucose tablets and a huge amount of apple juice to get her back above 4. No idea what's going on but it has made me feel really miserable, I try so hard to get her carb counting/dose spot on and it just doesn't seem to work out the last few days.

I have not been to dr about me going below 4.0. I haven't really had time tbh. I used to think it was panic attacks as would get shaky, feel sick/sweaty etc but then I noticed if I had juice or lucozade tablets I felt ok again. It was only when dd2 was diagnosed that I recognised the symptoms and as I had a bg tester I checked when I felt like that and it has always been below 4. No other symptoms of diabetes, bg never ever higher than it should be (always on the low side). I do have PCOS but I think that's more a risk for t2 in later life?

paddyclampo Mon 15-Jul-13 23:42:48

Some days you can do everything right and your levels really rubbish and other days vice versa! There are so many things that affect your levels. I find it so hard to get people who have no experience of diabetes to understand that :S

Sounds like you have hypoglycaemia! It's not recognised so much in the UK but is common is the US!

ariane5 Tue 16-Jul-13 12:53:35

Having (so far) a slightly better day. Dd still running low but I'm checking her more often and keeping her topped up with little snacks (trying to avoid any lows but not go too high either is difficult!).

So far we have had 4.9 on waking, 4.4 2hrs post brek, 6.5 mid morn and 9.4 before lunch. Really hoping to avoid any hypos today. Managed to get her into pre school for 1.5 hrs this morning and she had fun.

Hope everybody else is ok today.

paddyclampo Tue 16-Jul-13 22:04:24

A bit better today thankfully! Feel a bit rough after yesterday but levels have definitely stabalized!

Hope your DD had a good day. Do you have any other kids Ariane5 ?

ariane5 Tue 16-Jul-13 22:48:27

Yes I also have dd1 11, ds1 6, and ds2 15 months as well as dd2 3.

Its very hard work at the moment. All 4 dcs have EDS hypermobility type, dd1 has pots (causes faints/dizziness) and a chest problem as does ds2. Ds1 has multiple severe allergies and suffers from migraines too.

Really fed up of appts/hospitals etc etc. Dd2 getting diabetes was the last thing we needed the past few months have been awful.
Trying to meet all their needs is hard but they are all good and I'm so proud of them all.

Dd2 had a much better day today. Hoping tomorrow will be good too.

PolytheneGirl Wed 24-Jul-13 11:01:07

How's everyone getting on? I hope your chins are still up x

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