In limbo: waiting for antibody test result

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TwilightMidna said:
That's so good that you're starting to feel better already. Hopefully everything continues to move in the right direction for you. Goodness knows you've gone through enough already. If you ever want to chat you're welcome to message me. I'm sure I'll see you around in the comments either way! Hugs <3
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Thank you very much it is so kind of you. Am feeling more positive as am finally getting the hang of the blood testing and that is making me feel a lot more confident about it all. Think it will a bit if a learning curve and a long journey as my readings are still quite high and fluctuate quite a bit but some are a bit more consistent but still high. Not sure how long it takes to get them under control, as apparently i had been running on no insulin for a while, take care x
 
Hi everyone, a quick update as I’m just getting in to bed. My GAD antibody test has come back positive ! I’ll expect a call from my GP sometime soon (looks like he hasn’t seen the results yet), but does anyone have any links or information on what to expect next? Thank you again to you all for your kindness, validation and encouragement when I first posted. You really made a difference. Wishing everyone a peaceful evening x
 
TwilightMidna said:
Hi everyone, a quick update as I’m just getting in to bed. My GAD antibody test has come back positive ! I’ll expect a call from my GP sometime soon (looks like he hasn’t seen the results yet), but does anyone have any links or information on what to expect next? Thank you again to you all for your kindness, validation and encouragement when I first posted. You really made a difference. Wishing everyone a peaceful evening x
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Welcome to the type 1 club! Our motto...not the worst that could happen. I would expect a referral to a diabetes clinic, insulin, and a continous glucose monitor to keep you safe. You can eat what you want.
 
Tdm said:
Welcome to the type 1 club! Our motto...not the worst that could happen. I would expect a referral to a diabetes clinic, insulin, and a continous glucose monitor to keep you safe. You can eat what you want.
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I waited and waited for a referral, my gp had to send me to a&e in the end as no appointment turned up and i ended up so sick, so make sure you chase it up if nothing happens. Can we really eat what we want ? I have been trying to be good and change my diet x
 
Tdm said:
Welcome to the type 1 club! Our motto...not the worst that could happen. I would expect a referral to a diabetes clinic, insulin, and a continous glucose monitor to keep you safe. You can eat what you want.
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Some people start low carb. I did, whilst i found it helpful at first, i found it really h.ard to put on weight on low carb and i was quite close to being underweight for a while. I also found i needed more insulin per gram of carbs. So, ironically, i was injecting more insulin on low carb than i needs for high carb. Also low carb pretty much always means high fat and not sure how healthy that is long term. I wouldn't really recommend it, but everyone is different.
I take a long lasting insulin, which lasts 24 hrs, and a rapid acting insulin which lasts about 5 hours. Thats pretty typical. You may start on low doses and work your way up. You soon get used to it.
As you get your blood sugars down, its important to always have low blood sugar treatments on you. Full sugar coke, or fruit juice, is the quickest. Glucose tablets are a good back up but can take longer. And set your glucose monitor alarms to about 5 ( or higher ) will allow you to treat blood sugars begore they go too low (which is below 4)
Most people feel bad if they go low, but best to set the alarms esp for night.
If you go below 4 the official line is take 15 grams of fast acting carbs, weight 15 mins, retest and repeat until above 4, but alot of times you can head lows off before then with, perhaps, 3-5 carb, bepending on jow fast you are falling.
And remember, it DOES get easier. At first it can be hard, but thats just because its new and there is a lot to learn!
 
kellie01 said:
I waited and waited for a referral, my gp had to send me to a&e in the end as no appointment turned up and i ended up so sick, so make sure you chase it up if nothing happens. Can we really eat what we want ? I have been trying to be good and change my diet x
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Yes! We can eat normally with insulin 🙂 Type 1 is an auto-immune condition. The aim is to take insulin to control your blood sugar not to eat a special diet. Someone could eat the healthiest diet in the whole world and they’d still develop Type 1 (because it’s auto-immune not to do with diet). Likewise, a Type 1 could eat the world’s healthiest diet but if they don’t take their insulin or use it inappropriately, their diabetes won’t be controlled.
 
kellie01 said:
I waited and waited for a referral, my gp had to send me to a&e in the end as no appointment turned up and i ended up so sick, so make sure you chase it up if nothing happens. Can we really eat what we want ? I have been trying to be good and change my diet x
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Yes. I didn't beleive that at first, despite people telling me so, but its true. I now i have chocolates, bread, potatoes, rice and still have a good a1c
Ok, so best not eat a whole box of choccys, but that's never been healthy. And pizza is infamously tricky to dose insulin for....
I do still eat low carb at dinner when working as its less hassle.
 
Tdm said:
Yes. I didn't beleive that at first, despite people telling me so, but its true. I now i have chocolates, bread, potatoes, rice and still have a good a1c
Ok, so best not eat a whole box of choccys, but that's never been healthy. And pizza is infamously tricky to dose insulin for....
I do still eat low carb at dinner when working as its less hassle.
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My a1c was 141 when i was in hospital so not sure what it is up to now, was 154 when it was first taken in may x
 
Inka said:
Yes! We can eat normally with insulin 🙂 Type 1 is an auto-immune condition. The aim is to take insulin to control your blood sugar not to eat a special diet. Someone could eat the healthiest diet in the whole world and they’d still develop Type 1 (because it’s auto-immune not to do with diet). Likewise, a Type 1 could eat the world’s healthiest diet but if they don’t take their insulin or use it inappropriately, their diabetes won’t be controlled.
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So sorry if i sound stupid, but surely the more sugary things i eat then the higher my blood glucose level will be ? Or is that not correct ? I need to put weight on as went down to 6 stone 6lbs which is way too low for me, but have to wait until October to see the dietician x
 
kellie01 said:
My a1c was 141 when i was in hospital so not sure what it is up to now, was 154 when it was first taken in may x
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You'll soon get it down. Mine was 111 at diagnosis. 3 months later it was 52.
You don't want it too go down too much, too quickly as that can be rough on your body. Mind you they started me on 5 times the slow acting insulin I actually need. Fun times! Setting an alarm to wake me every 2 hours to check all ok! That was before i got my cgm and could rely on its low sugar alarms
 
Tdm said:
You'll soon get it down. Mine was 111 at diagnosis. 3 months later it was 52.
You don't want it too go down too much, too quickly as that can be rough on your body. Mind you they started me on 5 times the slow acting insulin I actually need. Fun times! Setting an alarm to wake me every 2 hours to check all ok! That was before i got my cgm and could rely on its low sugar alarms
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The thing is until my levels go down enough i can't get my cataracts done x
 
kellie01 said:
So sorry if i sound stupid, but surely the more sugary things i eat then the higher my blood glucose level will be ? Or is that not correct ? I need to put weight on as went down to 6 stone 6lbs which is way too low for me, but have to wait until October to see the dietician x
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Not stupid. Yes, sugar, and carbs such as bread, will sent blood sugars up, but if balanced with insulin the rise can be kept to the sort of rise 'normal' people have. 4 to 10 is target. Very occasionally you have a flatish line, but thats a unicorn day and you will drive youself mad if you aim for that. Taking insulin a little time before you eat can help, and also walking afterwards, can help, but just be careful at first
As for diabetes clinic, well, to be honest, i pretty much worked most of it out for myself, from here and utube. 'Think like a pancreas' is also very good book with tips on avoiding spikes. I find it best to try to avoid book/people who have a 'way' or who are promoting a miracle 'solution'.
Low carb snacks like nuts and seeds, cheese, boiled eggs, avocados can help you put weight on. I find babybels a nice snack if i want something to eat bit don't want to inject insulin.
 
Tdm said:
Not stupid. Yes, sugar, and carbs such as bread, will sent blood sugars up, but if balanced with insulin the rise can be kept to the sort of rise 'normal' people have. 4 to 10 is target. Very occasionally you have a flatish line, but thats a unicorn day and you will drive youself mad if you aim for that. Taking insulin a little time before you eat can help, and also walking afterwards, can help, but just be careful at first
As for diabetes clinic, well, to be honest, i pretty much worked most of it out for myself, from here and utube. 'Think like a pancreas' is also very good book with tips on avoiding spikes. I find it best to try to avoid book/people who have a 'way' or who are promoting a miracle 'solution'.
Low carb snacks like nuts and seeds, cheese, boiled eggs, avocados can help you put weight on. I find babybels a nice snack if i want something to eat bit don't want to inject insulin.
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Thank you x
 
kellie01 said:
So sorry if i sound stupid, but surely the more sugary things i eat then the higher my blood glucose level will be ? Or is that not correct ? I need to put weight on as went down to 6 stone 6lbs which is way too low for me, but have to wait until October to see the dietician x
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@kellie01 You don’t sound stupid 🙂 All carbs are turned to glucose (and so is protein to a lesser extent). Glucose is our body’s fuel. Insulin is the key that allows our body’s cells to let it in and use it. In Type 1/LADA, our own insulin production has failed permanently. So, we take insulin by injection to replace it. The answer is not starvation, strict diets or nibbling lettuce and crispbreads - it’s insulin! Just like before we were diagnosed, we eat a proper normal diet but we have to now take over the role of our pancreas and inject appropriate amounts of insulin. Insulin is the answer.

You can eat bread, pasta, rice, cereal, pizza, quinoa, cake, fruit crumble, croissants, flapjacks, cereal bars, etc etc. The only thing I was told to avoid was sugary drinks unless treating a hypo or about to exercise. Yes, food will make your blood sugar go up but that is not because food is bad. Food is supposed to do that. Our only issue is that we now need to ‘think like a pancreas’ and inject the right amount of insulin at the right time to cover that food because our pancreas can no longer do this properly.

You need to eat more and put the weight back on and maintain it. I lost a huge amount before diagnosis too, but it went back on with a proper diet and insulin 🙂
 
Tdm said:
Welcome to the type 1 club! Our motto...not the worst that could happen. I would expect a referral to a diabetes clinic, insulin, and a continous glucose monitor to keep you safe. You can eat what you want.
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@Tdm, thank you for this insight (and for the welcome!). I have to say, at the moment I just feel relieved. I need to eat and put on weight. Hopefully this means I can start doing that. I know that feeling will pass and all the other emotions will flow in but at the moment that's how I feel... Hoping today is good to you and thank you again x
 
kellie01 said:
I waited and waited for a referral, my gp had to send me to a&e in the end as no appointment turned up and i ended up so sick, so make sure you chase it up if nothing happens. Can we really eat what we want ? I have been trying to be good and change my diet x
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@kellie01, what happened to you was so scary and upsetting. Especially as it seems like it shouldn't have had to get that bad before you got help. Thank you for the encouragement and also for asking these questions - it helps me too to hear the responses! x
 
Glad your results have come through and have given you a clear direction. Hope your confirmation of diabetes type comes through swiftly, and you start to get some helpful advice and a referral to your nearest hospital clinic for some practical support.
 
everydayupsanddowns said:
Glad your results have come through and have given you a clear direction. Hope your confirmation of diabetes type comes through swiftly, and you start to get some helpful advice and a referral to your nearest hospital clinic for some practical support.
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@everydayupsanddowns, thank you so much. Spoke with my GP today and he is calling it LADA. After a discussion, we decided I would start on a basal/bolus routine next week, along with a Freestyle Libre. I have been referred to a specialist but apparently the appointment may not be for 6-12 months. I have to say the relief has swiftly passed and I was up all night feeling anxious. Trying to take things one step at a time (trying being the operative word!). Thanks for your support x
 
That’s great news @TwilightMidna ! I know it must also be a bit scary, but I’m sure you’ll be started on moderate doses, and the Libre will allow you to monitor things closely. Take it slowly and carefully; get hypo treatments in, along with carby snacks as top-ups; and ask anything you want here.
 
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