Type 1? Confused..

[lolabunny876]

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

 

[urbanracer]

What was your T1 diagnosis based on? What tests did you have done?

 

[lolabunny876]

What was your T1 diagnosis based on? What tests did you have done?

I had the islet test and it came back negative, however, the doctor said another test was done (I think it was the one that tests your blood sugar over a period of 3 months) and that apparently suggested I had type 1? I feel like the doctors really aren't disclosing a lot of information to me because they are also confused and don't want me to end up diagnosing myself wrongly and therefore, abusing my health.

 

[donnellysdogs]

Did you used to drink a lot of sugary fizzy drinks?

 

[lolabunny876]

Did you used to drink a lot of sugary fizzy drinks?

Yes! I'm at university and honestly I ate like a pig. In a night I would easily get through a packet of biscuits and maybe even a few doughnuts. I have never been large so obviously being young and dumb I thought this was an okay way to live, and I was losing weight rapidly despite the amount of rubbish I was consuming.

(Just to state I have most definitely changed my ways since the diagnosis and as I said, haven't touched any sugary treats since! I have also done an extensive amount of research on the dangers of sugar and diabetes itself)

 

[donnellysdogs]

Could be possibly that you were really going OTT for your organs and that it may come back and (bite you on the bum) at a later date i.e pregnancy but if you are now eating a good, balanced diet that you would be able to stay in honeymoon phase for quite a while..

I would just keep a good eye on your foods now, keep testing and monitoring..

 

[lolabunny876]

I see, that's definitely a possibility! Thanks for the information

 

[lolabunny876]

Also, I have no idea if this makes any difference whatsoever, but at the time of my diagnosis I had been suffering from reoccurring urine and kidney infections and, therefore, my body was also under a lot of other stresses..

 

[donnellysdogs]

Ha! You were probably causing the kidney and urine functions to be honest with the food, and fizzy drinks...

Infections are more common whether urinary, kidneys, cystitis, thrush, etc when levels are high.

I was a high fizzy full sugar drink child and I always put that as a contributor to my being T1. Doctors always told me "no" it wasn't the fizzys but Even 30 years on I still think they contributed to killing my islet cells off...apart from those fuzzy drinks I waa a bad eater till 8 years old surviving on gold top milk and complan and sausages. Then I started to eat better but was never a high carber-but the fizzy drinks prob to me just overloaded..

I hope that maintaining low carbs and healthier eating keeps T1 from crashing in on you... I hope you can find the foods etc to enjoy but maintain low levels... Xx

 

[Kristin251]

Obviously you still have pancreatic function but still blood sugar disregulation. Perhaps with all the sugary things your bs shot up and your pancreas couldn't keep up or catch up but once levels came down it is able to cope without meds as long as you keep your diet in check.

Keep testing.

 

[azure]

Hi @lolabunny876 Definitely keep testing so you can keep an eye on your blood sugar, especially after meals.

Perhaps you were lucky and they caught your diabetes early enough that you still have some functioning islets and so a longer honeymoon?

Are you having follow up appointments with your doctors so they can see how you go over the next few months?

 

[Imissmybetacells]

Not too different to what happened to me, I was diagnosed aged 30 after losing a stone in weight and always being thirsty. Bloods were somewhere around 33. I was drinking loads of orange juice to quench my thirst, (which is full of sugar) My honeymoon phase lasted around a year. Basically your immune system has wrongly attacked and killed most of the cells that make your insulin, you may have a small percentage left now, and these may keep your blood sugars in the right range as long as you are on a reduced/low carb diet. If you have a lot of carbs they may not be able to cope in the long term.

Imagine pre-diagnoses that you had a 100 soldiers doing the job of keeping your sugars balanced, now you have 3. These are having to work really hard now, and eventually they will probably be overworked and die too. Or your immune system might finish them off as well. The longer you can stay in the honeymoon phase the better as once it's over it is much harder to control. But don't worry, you'll soon get used to it. It so hard to know how much to jab initially as your body is still doing some of the work, that's why you might be having hypos. (Especially if you are having a long acting insulin too like lantus or levemer). That will still be working alongside what your body is doing.

The best thing to do in my opinion is try and reduce carbs, and keep a record of what you are eating and injecting. It is the only way to learn what is happening inside your body. Trial and error. And don't beat yourself up, it's so overwhelming and hard at first and there is so much information to take in. I used an app called "glucose buddy" at first. It was a pain but it really helped me see what was going on with my sugars. Sorry if I've said stuff you already know.

 

[Daibell]

Hi. As a wild guess Is suspect you are T2 and not T2 but suffering from that wrong diet? I can understand why the docs might be confused. BTW the 3 month blood test (HBA1C) only measures your average blood sugar level and not the cause. I would keep up the good diet and only have the meds (tablets) if any that you need. The insulin is probably not needed?

 

[markastin]

Hi, I was only diagnosed type 1 last December at 30 years old! My first 5 months I had very little insulin (honeymoon period) I was able to eat up to 80g of carbs with no novo rapid at all and only using 4 units of background insulin! This is not the case now however. I now use 12 units of background insulin and at least 1 unit of novo rapid rapid for every 10g of carbs! Having between 4 and 8 injections a day now lol! It does come to an end and when it does being ready for it is a massive advantage!

 

[lolabunny876]

Ha! You were probably causing the kidney and urine functions to be honest with the food, and fizzy drinks...

Infections are more common whether urinary, kidneys, cystitis, thrush, etc when levels are high.

I was a high fizzy full sugar drink child and I always put that as a contributor to my being T1. Doctors always told me "no" it wasn't the fizzys but Even 30 years on I still think they contributed to killing my islet cells off...apart from those fuzzy drinks I waa a bad eater till 8 years old surviving on gold top milk and complan and sausages. Then I started to eat better but was never a high carber-but the fizzy drinks prob to me just overloaded..

I hope that maintaining low carbs and healthier eating keeps T1 from crashing in on you... I hope you can find the foods etc to enjoy but maintain low levels... Xx

Thanks so much! Totally agree I 100% think it's down to the amount of sugary rubbish I was eating.. The support is priceless so thank you for everything you have said xx

 

[lolabunny876]

Hi @lolabunny876 Definitely keep testing so you can keep an eye on your blood sugar, especially after meals.

Perhaps you were lucky and they caught your diabetes early enough that you still have some functioning islets and so a longer honeymoon?

Are you having follow up appointments with your doctors so they can see how you go over the next few months?

I have a further follow up appointment in November and have also joined a doctor in Brighton and am seeing a diabetic nurse tomorrow! Thank you for the advice x

 

[lolabunny876]

Not too different to what happened to me, I was diagnosed aged 30 after losing a stone in weight and always being thirsty. Bloods were somewhere around 33. I was drinking loads of orange juice to quench my thirst, (which is full of sugar) My honeymoon phase lasted around a year. Basically your immune system has wrongly attacked and killed most of the cells that make your insulin, you may have a small percentage left now, and these may keep your blood sugars in the right range as long as you are on a reduced/low carb diet. If you have a lot of carbs they may not be able to cope in the long term.

Imagine pre-diagnoses that you had a 100 soldiers doing the job of keeping your sugars balanced, now you have 3. These are having to work really hard now, and eventually they will probably be overworked and die too. Or your immune system might finish them off as well. The longer you can stay in the honeymoon phase the better as once it's over it is much harder to control. But don't worry, you'll soon get used to it. It so hard to know how much to jab initially as your body is still doing some of the work, that's why you might be having hypos. (Especially if you are having a long acting insulin too like lantus or levemer). That will still be working alongside what your body is doing.

The best thing to do in my opinion is try and reduce carbs, and keep a record of what you are eating and injecting. It is the only way to learn what is happening inside your body. Trial and error. And don't beat yourself up, it's so overwhelming and hard at first and there is so much information to take in. I used an app called "glucose buddy" at first. It was a pain but it really helped me see what was going on with my sugars. Sorry if I've said stuff you already know.

No no any information is absolutely priceless at the moment! I am very open to new theories as currently I am just confused haha.. Yeah when I was taking the insulin I was having hypos 24/7. I suppose I am just shocked that I still suffer from hypos regularly and I haven't taken any insulin (including overnight insulin) in months The doctors are struggling to understand why.. But I am definitely taking care of the amount of carbs I eat. Because of the unexplained hypos which aren't induced by artificial insulin the doctors are telling me to make sure I keep my carb intake relatively high. I am just so frustrated haha!

Honestly, the support is great and it's so nice to be able to talk to other people who have been in similar situations x

 

[lolabunny876]

Hi, I was only diagnosed type 1 last December at 30 years old! My first 5 months I had very little insulin (honeymoon period) I was able to eat up to 80g of carbs with no novo rapid at all and only using 4 units of background insulin! This is not the case now however. I now use 12 units of background insulin and at least 1 unit of novo rapid rapid for every 10g of carbs! Having between 4 and 8 injections a day now lol! It does come to an end and when it does being ready for it is a massive advantage!

Yes 100%! I have come to terms with the fact that is will eventually come to an end and trying to just enjoy life whilst everything is good Hope you are well and thank you for the advice x

Btw did you still suffer hypos even when you were just on the 4 units of background? I am currently taking no insulin whatsoever but am still suffering from hypos!?

 

[lolabunny876]

Hi. As a wild guess Is suspect you are T2 and not T2 but suffering from that wrong diet? I can understand why the docs might be confused. BTW the 3 month blood test (HBA1C) only measures your average blood sugar level and not the cause. I would keep up the good diet and only have the meds (tablets) if any that you need. The insulin is probably not needed?

Definitely agree with this. I am going to see a diabetic nurse and would love to be given some tablets just so I know I am on some sort of medication for my confused pancreas/immune system. I do feel as if the insulin is not needed as I am still suffering hypos even without it!? Thank you for the advice, the support is much appreciated x

 

[azure]

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.