Any type 1's who don't use insulin?

[jessie]

Hi everyone,

I have recently had my third HBA1c (been diagnosed with T1 for just over a year) and scored 5.4. Yay! I changed my doctors surgery recently as I wasn't happy at my previous one and my new DN is really nice, she is also a T1. She requested my notes from the hospital and told me that my consultant had queried whether I'd always have to take insulin. I only take 5 units of Lantus (once a day) and 0-4 units of Novo Rapid depending on what I'm eating. I do follow a low carb diet but tend not to talk about this too much with the NHS peeps! I just presumed that my diet, combined with possible honeymooning and being relatively new to diabetes was the reason for my good results and having to use little insulin.

I was told by my doctor that my body must be producing it's own insulin and he thought my case was also strange because of my age and no family history of diabetes.

I don't want to get my hopes up about not having to take insulin but was wondering if anyone else has experienced this, or has stopped taking it? When I was first diagnosed I read an interview with Halle Berry who claimed to have 'cured her Type 1' and was now a Type 2(!), controlled by diet. I was angry and thought this was misleading but am now wondering if there is any truth in it..?

Any thoughts appreciated!

Jessie. x

 

[Sweet3x]

I've no idea, but wow. Hope it's correct, and you find you never have to take insulin again Fingers crossed for you!

 

[kegstore]

Could it be you were initially misdiagnosed, and it's always been Type 2? An HbA1c of 5.4% is an excellent result, whichever version you have!

 

[jessie]

I did wonder that... I have always been fit and healthy but then not all type 2s are overweight are they. I don't know how my diagnosis was done, was admitted to hospital with blood sugar of 27+ then sent home later that day with bags full of drugs!

If for example I were to eat a bowl of pasta without insulin, I know my BS would rise to about 17 and not sure that would happen if I was type 2. I have an appointment coming up with the consultant soon so I guess these are some questions I could ask.

Thanks guys.

 

[janabelle]

Hi Jessie,
Your consultant is right, your body it producing some insulin but it sounds like a Honeymoon period. Honeymoons can happen up to a year after diagnosis and does mean your body is producing some insulin,but it will not last. So just enjoy it for what it is, but don't raise your hopes.
I've been type-1 for 20 years and remember feeling like you do now when I was honeymooning.
Best of luck
Jus

 

[claridge]

Hiya,
I was diagnosed in Feb with BS level at 30. I have been doing the low carbing, no sugar thing- make almost all my own food to be carefull. Try to exercise at least a couple of times a week... thats along with walking 45 minutes a day. Just had my HBA1C and it was 5.6%- l have 5 units of Levemir once a day and never take any novorapid... only when l have overendulged or eaten drunk something l shouldnt have... and if lm near stairs then l climb instead

Im in a similar quandry as you... can we keep this up indefinitely... or should l say can our bodies.

My parents met a man down the pub whose wife was diagnosed with type 1 and through diet (low carbing no sugar etc) has reversed it and doesnt need to inject. Sounds like her hubbie has been really strict along with her ha and he checks her blood sugar once a week to make sure it is okay.

My personal trainer who has done numerous food, exercise, mind training believes that if l continue with my eating regime, exercise and cut out alcohol then l will be able to reverse it too.

I believe there is no definites and all we can do istry our best! And l feel sooo much better for it!!!! And lm not just talking about the low blood sugar... mentally as well. I now go out and dont drink ha imagine that! But it did not suit me at all when l was drinking and l feel l have wasted many years (well maybe thats a bit strong...) but now l have my evenings (and actually remember them!)... and all day!!! I love getting up on weekends and doing outdoors exercise, doing cultural things etc.. and not having a hangover is amazing! Onwards and upwards l say!!

PS- in the middle of studying for an exam and doing loads of assessments.. in between work... and l still somehow find the time to be this positive ha! Just went for a run... maybe thats why!

xxx

 

[yipster29]

Hi Jessie

I was diagnosed similar time to Claridge and am the same too!

Went low(ish) carb and exercise and have 5 units levirmir and 0-2 Novorapid depending on meals and exercise.

I've also been told honeymooning but I can't help but feel we should be able to continue??

My DN considered reversing my treatment to tablets but said on the only other occasions she'd done this the patient ended up back to square one. Despite only just being diagnosed at 34 the hospital were certain it was T1 no 2 as I had BG 32 and very high ketones and no previous problems, not even gestational when pregnant.

Long may it last!!

 

[howie]

guys i hate to say it but you can't reverse type 1. it can be done with type 2 if your borderline. our immune system kills off beta cells so we don't produce insulin (or enough). type 2's are insulin resistant so can at least attempt to make themselves as sensitive as possible. we got no choice but to use insulin. being healthy + fit is defo important but wont stop our immune system and ain't gonna grow us new beta cells.

we need a cure to be cured,
all best,
howie

 

[howie]

ps the docs can do a c-peptide test to see how much insulin you still produce. they use it to tell the difference in people when there not sure if it's type 1 or 2.

 

[Iambackwards]

I'm in a similar situation, eat very low carb and taking between 1 - 3 units of levemir a day and 0 novarapid. At first I thought, hey, I'm cured! but like you, if I eat carbs without insulin my sugar levels sky rocket to.

I've been type 1 for about 18 months now and didn't always take this low amount of insulin until I started exercising and eat low carbs, so I'm not sure if I could call it a honeymoon period or if its a result of lifestyle changes.

When my insulin requirements dropped so little, I searched a lot on the Internet to see if anyone else was like this and there are plenty of type 1's who don't take any insulin at all. If you google raw food diet you'll find some people who only eat raw food and don't need insulin. I'm pretty sure this is because they are eating tiny amounts of carbs and protein and type 1 is classified as 80% or more of your pancreas beta cells not working. So if you are eating a low amount of carbs and protein and still have 20% of your beta cells producing insulin, you would in effect not need insulin because your insulin requirements are handled by your natural production of insulin.

I have also read that low levels of insulin are healthy, but I don't know if too low could be a problem and I can't find any info on this. If you're taking only 5 units of levemir a day and your pancreas is producing some insulin throughout the day, is it enough to keep your hormones balanced? From what I've read insulin is only needed to maintain sugar levels, but a lack of it will also cause incredible weight loss. So I guess the only problem taking small amounts of insulin because you're eating low carbs is that it would be nearly impossible to gain weight and incredibly easy to lose it.

For the last few months I've experimented with lowering my insulin more and more, until the point of taking only 1 unit of levemir a day. In just under 6 months I've lost 40lbs, going from 188lbs to 148lbs by eating a high fat, very low carb, medium protein diet. As I've lost the weight my insulin requirements have dropped from over 20 units a day but I still don't think my diagnoses was incorrect, we just require small amounts of insulin because we produce some insulin, require small amounts from our diet choices and are sensitive to the insulin we do inject.

 

[kegstore]

Anyone who can say they have reversed Type 1 Diabetes should definitely give up the day job, and retire on the sale of the patent rights for the cure! As howie says, there is currently no cure for it. If you're still producing insulin after a couple of years, chances are you've been misdiagnosed and have something other than Type 1.

PS The fact that food is raw doesn't negate the requirement for insulin - it's what is in the food that matters

 

[yipster29]

I know some posts mentioned is it possible to reverse but I know it's not what I think, I know it can't be reversed but meant I was hoping with the diet and exercise I could keep the weight off and the insulin down as long as possible gotta be good!!

Interesting to see so many are able to do the same as my DN seemed to think it very unusual!

 

[phoenix]

I think that there are a variety of conditions all lumped under the term type 1/type 2.
In classic childhood/adololescent type 1 the destruction of the beta cells is swift, honeymoons are short, but even there some people have been tested after 50 years and found to have some residual beta cell function.
When diabetes happens later, the destruction is much more gradual and true insulin dependency may take some time. The older the person is when it develops, the more gradual the process. This is sometimes often termed LADA and most authorities say it can take from 2-6 years for the beta cells to fail to the extent of true insulin dependency.

In my own experienc e and I have read of others I think that this period can be longer than that. And drug manufactureres are certainly looking at ways to extend it. I also think that I have periods where I produce quite a bit of my own insulin for a while, followed by a need for more injected insulin, followed by another period where I produce more... and so on. Its actually quite frustrating.
Yet I still need some insulin during these times when I need only small insulin doses. I find it almost incredible but I can reduce my insulin to .1u per hour (using a pump) for exercise and still have a hypo, yet if I stop the insulin entirely for that exercise my levels will shoot up and I will produce ketones. PLEASE DON'T ANYONE EVER TRY TO STOP INSULIN WITHOUT DISCUSSING IT WITH DOCTORS KETOSIS CAN DEVELOP VERY QUICKLY

There is also another type of 'type 1' which has very little research. This is called type 1b (that is ideopathic or of unknown origin). The person is ketone prone but doesn't have any (detectable) antibodies. The numbers with this type are supposed to be growing.
One variety of 1b has been called Flatbush (horrible name). This seems to be found in primarily in non caucasian populations (though now they're looking for it they seem to be finding people with it of all races) This presents with DKA, the person does not have antibodies, they are sometimes overweight and often have a family history of type 2.Once under control the diabetes can be controlled with oral medications, and sometimes just diet, though the person may have subsequent periods where insulin is necessary. Possibly Haille Berry has this type of diabetes.(?) ( NOTE THIS IS A RELATIVELY RARE TYPE)

 

[yipster29]

Interesting stuff Pheonix thanks

 

[claridge]

Hi,
At the moment l feel l need to find out more still about Ketones. Just last night l realised l have missed replacing my insulin cartridge by a week- oops! Replaced it and took my usual 5 units- my blood sugar was just under 7 and this morning was 3.9! I think my insulin had pretty much stopped working... so now going to reduce my Insulin even more and maybe l can get away with not taking any for a bit. Is there anything l should be worried about whilst doing this? My ketone level when tested the other day was 1.0 but Blood sugars always between 5 and 7 generally but l think that was with my off insulin so today its hovering around the 4 mark... snacking on lots of nuts as dont want it to go down too low but l will not have sugar/carbs though and overcompensate! ha :0)
xx

 

[claridge]

Can l ask you all a question as well... do you drink alcohol? Since diagnosed l have massively cut down and rarely drink now.

 

[yipster29]

Hell yes!!
Have cut out all bar Red wine and spirits though

In the interests of bringing my BG down though obviously :lol:

 

[hanadr]

I think a great deal of sense has been written on this thread, but I'm convinced that there is a LOT of misdiagnosis going on out there. Very few doctors seem to use C-peptide tests to confirm T1 There is an assumption that if the patient is young and slim and the symptoms came on fairly fast, It's T1, without checking. Slow onset, overweight and middle aged or more is T2. If a T2 is misdiagnosed as a T1, then nothing drastic is likely to happen. The other way round can be life threatening and then DKA may bring the mistake to light if the patient survives. :evil:

 

[claridge]

Im young and slim and diagnosed as Type 1.... down to almost no insulin...

 

[lionrampant]

Im young and slim and diagnosed as Type 1.... down to almost no insulin...

How long have you been diabetic?