Type 1? Confused..

[markastin]

Please just try to keep checking because it can literally change over night, mine still is! Even the change in temperature or climate has changed my control and the difference is massive! I was getting up to 5.5 bs now it's 14 or was before I increased my lantus! This is a challenging condition but acceptance and perseverance will help, I'm always here if need be because I'm not that far I front of where you are now! Look after yourself and hopefully you carry on how you are but be prepared to start working out doses and carb counting!

 

[lolabunny876]

Just a thought @lolabunny876 but do you test your blood sugar after eating? The reason I ask is when I got Type 1 I could not have any insulin at breakfast, eat cereal and toast and then be borderline low before lunch. Yet, unknown to me, I was actually going high after the breakfast - about 90 mins after. My consultant said this was my pancreas failing - it produced insulin still but the timing was all wrong and then it ended up producing too much and sending me low.

I'm not saying this is what you have, but it's an example that shows diabetes can be a tricky thing. If I hadnt done extra tests I wouldn't have realised this was happening.

Ahh I see, this is very interesting and helpful. I tend to stay high (around 8 - 9) for around 3 hours after eating (unless I exercise) but within the next hour it will rapidly drop. I also thought this was very important due to the online research I had been doing, however my doctor told me to stop worrying about my after meal bg levels Which I thought was stupid as I've heard after meal levels are the most important!!

However, I must say my levels tend to stay higher during the evening. I am sometimes cheeky and will have a bowl of porridge before I go to sleep.. This is when my bg levels tend to stay high, but whenever I wake up they are back to normal. After breakfast and lunch they seem to be very well controlled, but maybe I should just cut out that later night snack

 

[lolabunny876]

Please just try to keep checking because it can literally change over night, mine still is! Even the change in temperature or climate has changed my control and the difference is massive! I was getting up to 5.5 bs now it's 14 or was before I increased my lantus! This is a challenging condition but acceptance and perseverance will help, I'm always here if need be because I'm not that far I front of where you are now! Look after yourself and hopefully you carry on how you are but be prepared to start working out doses and carb counting!

Definitely, I honestly check it everyday at least twice because I know how quickly everything can go down hill.. Definitely don't want to end up back in the hospital! Thank you so much Everything you have said is much appreciated, definitely feel like I need the support!

 

[markastin]

You got it! Professional advice is always better but believe the people on here are or have been through it! In my case I still am struggling but it doesn't define me! A rest is good sometimes or time on your own to think and figure things out! High after 2 hours have a walk and think then check when you get back! Plus try jelly babies for hypos I've figured out what effect each jelly baby has on my bs! Lucozade does remain the fastest remedy though!

 

[Brihaze]

Hey everyone,

I'm 21 years old and was diagnosed with Type 1 diabetes 2 months ago. When I was first admitted to hospital, my blood sugar was a shocking 31 and it was surprising I hadn't entered diabetic coma. However, since coming out of hospital I have entered what I have been told is the honeymoon phase. Even 1 unit of insulin will send me completely over the edge and I will have constant hypos when taking any sort of insulin. I still have hypos even though I have taken no insulin since a week after my diagnosis. My waking bg levels are always between 4 - 7 (usually around 5.5) The doctors seem confused, my family and myself. I am currently on no insulin and am in perfect health (for now!) I have stayed away from anything sugary since diagnosis (cakes, fizzy drinks, biscuits) but still eat carbs as normal with no issues. Just wanted to know what you guys thought about this?

X

Honey moon stage usually refers to LADA but generally occurs in older people around 45 plus, this stage is hard to control as the body's insulin rate varies until finally settling down it took me over 2 years before I could successfully control with regular insulin injections that was almost 40 years ago

 

[Chloefox22]

I'm 24. Was diagnosed t1 in Dec 15 when I was 17 weeks pregnant. Because I have other medical problems they knew I was t1 before even doing tests. They did the GAD test which was positive at >2000. During pregnancy I was taking at least 60units a day, my carb ratio was ridiculous. Then when I had my little one I breastfed which meant I needed no insulin whatsoever as she was feeding every 2 hours keeping my sugars at a constant low. Between 2-5. This was also my honeymoon phase. I finished Breast feeding at 5months and within a week I was back on the insulin. My nurse and Dr couldn't understand why I had my honeymoon phase despite the amount of carbs and sugar I was consuming to try and get my bg up so I felt sort of human again! It was so hard being a new tired mum battling low sugar. If you truly are t1, enjoy it while it lasts hun!!

 

[redtree92]

Hey everyone,

I'm 21 years old and was diagnosed with Type 1 diabetes 2 months ago. When I was first admitted to hospital, my blood sugar was a shocking 31 and it was surprising I hadn't entered diabetic coma. However, since coming out of hospital I have entered what I have been told is the honeymoon phase. Even 1 unit of insulin will send me completely over the edge and I will have constant hypos when taking any sort of insulin. I still have hypos even though I have taken no insulin since a week after my diagnosis. My waking bg levels are always between 4 - 7 (usually around 5.5) The doctors seem confused, my family and myself. I am currently on no insulin and am in perfect health (for now!) I have stayed away from anything sugary since diagnosis (cakes, fizzy drinks, biscuits) but still eat carbs as normal with no issues. Just wanted to know what you guys thought about this?

X

Wow ! thats amazing, if you can keep that up you are blessed

I am 24 with type 1 and my honeymoon phase was ok, but i still needed the four injections a day, and i remember it being hideously hard to keep my levels down, it sounds like its not type 1, but i am no doctor!

I hope you are feeling ok, thats quote late on to be diagnosed, was it brought on by anything at all?

All the luck in the world to you beautiful.
xxxx

 

[Mep]

I'm assuming they did all the tests on you before diagnosing? I have had GAD test, c-peptide test done 3 times since I was diagnosed. The first 2 tests showed I had sufficient insulin, the 3rd lot showed insufficient insulin but still type 2. You're probably in the honeymoon period though as you say... sounds like you're doing well. I'm glad to hear you've made changes to your diet. Hopefully you get a good run before you need to be on injections.

 

[lolabunny876]

Hello everyone,

I know it has been 2 years since I created this post (and was diagnosed) but I wanted to give you guys an update as I believe I’m in an extremely rare position. I am now 23 years old and currently in the process of completing my MA in Globalisation: Politics, Conflict and Human Rights. I weigh 64kg and am 180cm tall (yes, I’m a giant) Believe it or not, my diabetes is now completely diet and exercise controlled, and the doctors still haven’t seemed to figure out why yet. It’s a mystery regarding what type of diabetes I have, but I think its becomming clear that it’s not type 1, as I haven’t needed to administer any form of insulin. However, I do follow a relatively strict diet, consisting of barely any carb, especially not pasta or rice (they spike my bg like a mf) My most recent a1c came back at 6% which I’m more than happy with, and haven’t had any major complications since diagnosis. I’m still learning what I can and can’t eat, as although this may sound like a fairytale, it only takes one poor meal decision to leave me high for hours. Also, with my diabetes being diet and exercise controlled, I have completely cut out sugary snacks, fizzy drinks and desserts from my diet. I think by far the weirdest part of this situation is that I still suffer from lows even though I do not take any form of insulin. If I haven’t eaten for a couple of hours, skipped a meal, am walking around in the heat or have engaged in some moderate exercise, I still suffer from low bg usually ranging from 2.9 - 3.9. I have even been woken up in the night by lows. I really am a medical marvel lol. I know this is pretty random, but seeing as my case is a rarity, I thought it would be interesting to share my story with everyone. If you have any questions feel free to ask Hope you’re all well.

 

[EllieM]

I think by far the weirdest part of this situation is that I still suffer from lows even though I do not take any form of insulin. If I haven’t eaten for a couple of hours, skipped a meal, am walking around in the heat or have engaged in some moderate exercise, I still suffer from low bg usually ranging from 2.9 - 3.9. I have even been woken up in the night by lows. I really am a medical marvel lol. I know this is pretty random, but seeing as my case is a rarity, I thought it would be interesting to share my story with everyone. If you have any questions feel free to ask Hope you’re all well.

Thanks for the facinating update. Glad you've managed to stay off insulin. Just a thought, but have you looked at the reactive hypoglycaemia forum here?
https://www.diabetes.co.uk/forum/category/reactive-hypoglycemia.70/

 

[Mep]

Hello everyone,

I know it has been 2 years since I created this post (and was diagnosed) but I wanted to give you guys an update as I believe I’m in an extremely rare position. I am now 23 years old and currently in the process of completing my MA in Globalisation: Politics, Conflict and Human Rights. I weigh 64kg and am 180cm tall (yes, I’m a giant) Believe it or not, my diabetes is now completely diet and exercise controlled, and the doctors still haven’t seemed to figure out why yet. It’s a mystery regarding what type of diabetes I have, but I think its becomming clear that it’s not type 1, as I haven’t needed to administer any form of insulin. However, I do follow a relatively strict diet, consisting of barely any carb, especially not pasta or rice (they spike my bg like a mf) My most recent a1c came back at 6% which I’m more than happy with, and haven’t had any major complications since diagnosis. I’m still learning what I can and can’t eat, as although this may sound like a fairytale, it only takes one poor meal decision to leave me high for hours. Also, with my diabetes being diet and exercise controlled, I have completely cut out sugary snacks, fizzy drinks and desserts from my diet. I think by far the weirdest part of this situation is that I still suffer from lows even though I do not take any form of insulin. If I haven’t eaten for a couple of hours, skipped a meal, am walking around in the heat or have engaged in some moderate exercise, I still suffer from low bg usually ranging from 2.9 - 3.9. I have even been woken up in the night by lows. I really am a medical marvel lol. I know this is pretty random, but seeing as my case is a rarity, I thought it would be interesting to share my story with everyone. If you have any questions feel free to ask Hope you’re all well.

I'm glad to hear you have a good result. So did your docs do all the tests? It's odd they don't know what type of diabetes you have. There's more than 2 types though, so perhaps you have one of the rarer types. I wish you the best.