Type 1: I'm a horrible diabetic

AmandaD

Well-Known Member
Messages
109
Type of diabetes
Type 1
Treatment type
Pump
Hi Jessirene, you're not a bad diabetic at all. I've been where you are myself. Two years ago my HbA1c was 12.1% its now 7%. I stopped the insulin to lose weight and yes I did lose it but was sick as a dog I'v regained 2.5 stone of the 7.5 stone I lost. I've been pumping for the last 11 years and have had a cgm for the last 6. (type 1 30 years). Start small get one part of the day good before moving onto the next thing. Right now taking your insulin regularly is the important bit. Take baby steps don't let the charts and all the rest overwhelm you, thats not you at this moment in time, in a few months time you may well be posting the same graphs!! Try and take your insulin properly for the morning say and build from there, remember Baby steps. I get lectures every time I go to the clinic cos there is usually one thing or another they're not pleased with sometimes I just think they'd can't be pleased lol The cgm will help big time in seeing where your blood sugars are at. Its a shame that they haven't given you the means to actually download it, what CGM is it??
 

T.Strickland

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
I have been type 1 for going on 12 years now. The only time I was "controlled" was when I was pregnant, I got my A1C down from 13 to 6.4. I'm around 10 right now, but I look at all these post and half of what everyone post makes absolutely no sense to me. I see charts that people post that I've never seen before and other stuff. I am just horrible at this disease. I need to start taking care of myself, I just made an appointment with my Endo so I can get on track but I'm also terrified that getting healthy is going to make me Gaon weight like crazy. I can't be alone in this, am I?

I have been Diabetic for 10 years and have only ever been well controlled twice in that time! At the beginning i kept a diary and shopped well, and then in college i tried the same method, recording all the carbs, when i injected, how much i injected... but i'm so stuck in my own routine and find it very difficult to actually change my ways. You know your own body better than anyone else. I'm hoping to start a family in the next few years now i've just brought my first home, and im trying to be better, but it is difficult! You will find a way that works for you! x
 
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TorqPenderloin

Well-Known Member
Messages
1,599
Type of diabetes
Type 1
Treatment type
Insulin
Sorry to those who tagged me. I've been away from the forum all week traveling on business.

As others mentioned, I'm in the USA, using a Dexcom (G5), and I consider myself to have a very good understanding of how to maximize my health insurance benefits.

If you want my honest opinion: even if you have amazing doctors, they're not going to fix this for you. The problem is, there's only so much you can learn in a 1hr appointment. Ultimately, you're going to have to spend the time learning yourself.

The best thing I ever did in regards to my diabetes management was join this forum. It allowed me to access a ton of information that I could never learn in even 20 doctors appointments, but it also allowed me to get many different perspectives (some I agree with and others I don't) about what works for them.

I think the first step is read up and try to understand how insulin works on a basic level. You mentioned being worried about gaining weight on insulin which suggests you may not understand how it works. Insulin is an "ingredient" to gaining weight just like water is an ingredient to baking a cake. HOWEVER, it's impossible to gain weight with just insulin just like it's impossible to bake a cake with just water.

You don't have to fix everything at once and honestly this isn't going to happen overnight. Perhaps start by understanding why you do everything in your routine:

Why do you test your blood sugar? It's a silly question but what does that number actually mean?
When the number is high and you need insulin, why does insulin make your blood sugar drop? Where is that blood sugar (glucose) going?
When you eat carbs why do they make your blood sugar go up? Why do some carbs make your blood sugar go up faster than others? Why do some carbs (like fiber) not increase your blood glucose?

A lot of people don't know the answers to those questions. They just do those thing everyday because that's what they've been told to do. When you understand WHY you're doing those things it will improve your management significantly.
 
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fletchweb

Well-Known Member
Messages
408
Type of diabetes
Prefer not to say
Treatment type
Other
I have been type 1 for going on 12 years now. The only time I was "controlled" was when I was pregnant, I got my A1C down from 13 to 6.4. I'm around 10 right now, but I look at all these post and half of what everyone post makes absolutely no sense to me. I see charts that people post that I've never seen before and other stuff. I am just horrible at this disease. I need to start taking care of myself, I just made an appointment with my Endo so I can get on track but I'm also terrified that getting healthy is going to make me Gaon weight like crazy. I can't be alone in this, am I?
The first 25 years of living with diabetes for me was - how to stay alive 101. I only gave one shot a day, very seldom tested myself and ate whatever I felt like - somehow I survived and started becoming more responsible after the birth of my first child 25 years ago - so based on my experience first 25 years - no control next 26 years better control - I don't know if there are others that can say the same but I would suggest just go slow, and slowly adjust your benchmark for your highs. When I started looking after myself - (it was after blood work - first time in 10 years) and my HA1C was in the 10s. The health team changed my insulin, my diet radically changed and where I used to consider 18 as a high Blood sugar count before I would try to lower it - my benchmark got better and better so now I consider 12 very high and react if or when I reach that level. But I did this over a 26 year period - it wasn't like okay tomorrow I'm going to be the perfect patient. So my suggestion would be to slowly adjust and don't try to accomplish everything immediately because you will likely end up just being frustrated. In regard to gaining too much weight - avoiding carbs as much as you can may help unhealthy weight gain and try getting involved in something that requires physical stamina and exercise. You can do it! :)
 
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tammypettifer

Member
Messages
6
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
I think I like almost everything and can't think of anything I dislike at the moment!
I have been type 1 for going on 12 years now. The only time I was "controlled" was when I was pregnant, I got my A1C down from 13 to 6.4. I'm around 10 right now, but I look at all these post and half of what everyone post makes absolutely no sense to me. I see charts that people post that I've never seen before and other stuff. I am just horrible at this disease. I need to start taking care of myself, I just made an appointment with my Endo so I can get on track but I'm also terrified that getting healthy is going to make me Gaon weight like crazy. I can't be alone in this, am I?
Dear JessIrene, Please don't be so hard on yourself. I recently stopped using my Insulin because I was doing so incredibly well with my Type 2 Diabetes, but lately I have gone terribly wrong and my blood sugar has been going up and up. It was only yesterday that I said to my husband that I have completely gone off track but then this morning my blood sugar was 4.8! The only thing for us to to follow the Low Carb Plan, it really works, you will loose weight if you need to, you will only gain weight if you loose control. Have you done the 10 week Low Carb Programme on this site. It is straight forward, very helpful and insightful and so easy to follow. Keep the faith xxxx
 
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azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
@tammypettifer Most Type 1s eat moderate carbs. For Type 1s, a number of diets can give very good control as long as the person uses insulin appropriately.
 

tammypettifer

Member
Messages
6
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
I think I like almost everything and can't think of anything I dislike at the moment!
@tammypettifer Most Type 1s eat moderate carbs. For Type 1s, a number of diets can give very good control as long as the person uses insulin appropriately.
Thanks Azure, I do not understand the differences between Type 1 and 2 Diabetes but I thought that I was being helpful in a small way anyway.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Thanks Azure, I do not understand the differences between Type 1 and 2 Diabetes but I thought that I was being helpful in a small way anyway.

You were :) Whatever type of diabetes we have, we all understand how wearing it can be day after day, and how much ot can effect your life.
 

Jaylee

Oracle
Retired Moderator
Messages
18,213
Type of diabetes
Type 1
Treatment type
Insulin
Thanks Azure, I do not understand the differences between Type 1 and 2 Diabetes but I thought that I was being helpful in a small way anyway.

Hi,

It is possible for a T1 to go lower carb than the "moderate". (180g per day.) However. (In short.) We are screwed (as a T1) if we ditch the insulin due to no insulin producing beta cells...
So. With mindfull monitoring of BS, one can lower insulin use with low carbing, smooth out the BS & "uncomplicate" the "balancing act" in a busy world...
But it's not for everyone... ;)

Hey! What would I know. I just work with the body I got.... :) (Which weight wise has been consistent for years in adulthood.)
 

Nidge247

Well-Known Member
Messages
205
Type of diabetes
LADA
Treatment type
Diet only
Hi,

It is possible for a T1 to go lower carb than the "moderate". (180g per day.) However. (In short.) We are screwed (as a T1) if we ditch the insulin due to no insulin producing beta cells...
So. With mindfull monitoring of BS, one can lower insulin use with low carbing, smooth out the BS & "uncomplicate" the "balancing act" in a busy world...
But it's not for everyone... ;)

Hey! What would I know. I just work with the body I got.... :) (Which weight wise has been consistent for years in adulthood.)

Hi @Jaylee

I'm doing very well on 30-50g carbs per day. My remaining beta cells can produce enough insulin to cope very happily on that level.

I've just dropped down to 30g to take off the stone I gained over Christmas from those excess carbs; this brings my weight down around 2lbs per week, then when target figure reached, I'll just put the carbs back up to 50g to keep me steady.

So to say we are screwed as T1's without insulin isn't quite correct. Diabetes is a balancing act and it is still possible to make things work. If however I was to overload my system with 180g carbs, then yes I would need insulin - but then that's hypothetical because I just wouldn't.
I am fitter and healthier now on LCHF than I've been in decades.
 

Jaylee

Oracle
Retired Moderator
Messages
18,213
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Jaylee

I'm doing very well on 30-50g carbs per day. My remaining beta cells can produce enough insulin to cope very happily on that level.

I've just dropped down to 30g to take off the stone I gained over Christmas from those excess carbs; this brings my weight down around 2lbs per week, then when target figure reached, I'll just put the carbs back up to 50g to keep me steady.

So to say we are screwed as T1's without insulin isn't quite correct. Diabetes is a balancing act and it is still possible to make things work. If however I was to overload my system with 180g carbs, then yes I would need insulin - but then that's hypothetical because I just wouldn't.
I am fitter and healthier now on LCHF than I've been in decades.

Hi,
Sorry.
I should have been a little clearer.. I do in the region on 80g on the carbs. Fat wise? The least of my worries is the fat on my bacon.... ;)
The general "standard" for "moderate" is 180...
My basal is a consistant 13u. (Unless I come down with a virus or cold? Then I up it one or two U.) my bolus 1u to 10g...
In short? We "champion" the same "page" for our own requirements.... ;)

But, personally after nearly headbutting 41 years as. T1? I'm shafted without insulin....

Anyhow. That's enough about us... Let's both (with respect.) mutually trust the OP finds her own way! :cool:
 
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Midzbike

Newbie
Messages
4
I have been type 1 for going on 12 years now. The only time I was "controlled" was when I was pregnant, I got my A1C down from 13 to 6.4. I'm around 10 right now, but I look at all these post and half of what everyone post makes absolutely no sense to me. I see charts that people post that I've never seen before and other stuff. I am just horrible at this disease. I need to start taking care of myself, I just made an appointment with my Endo so I can get on track but I'm also terrified that getting healthy is going to make me Gaon weight like crazy. I can't be alone in this, am I?
So sorry you feel like this, I've been there for longer & know how you feel. The key is that we're all different, so you can't always trust what others say. Trust how you feel & get the "professionals" to explain in a way that you/I/we understand. I've found that talking, sharing, comparing and remembering that I'm me & nobody really knows how I feel is my way to remain sane. Ihope this makes sense & please talk to find the answer, (I hope) you owe it to your partner & child. The key is getting your head round you & the way you are- most people say I look good, but I don't feel that way inside; you look okay, but sound amazingly sensible! What does that mean? - I haven't got a clue, but think that two heads are better than one (...it's so much easier to smack 2 together!!) Tell me to bu***r off if it doesn't make sense to you, but let me know if it sounds familiar. Take care & smile (it will make people wonder what you're thimking!).
 

jessirene

Member
Messages
14
Type of diabetes
Type 1
Treatment type
Insulin
Thanks so much everyone. Every reply I get gives me a little more motivation.

The CGM I got is a freestyle, doc didn't give me the controller that shows my numbers, so I don't get to see the readings. Have to do my finger sticks 4 times a day. She gave me a new insulin to carb ratio because I'm so active at work.

I would love to have a dexcom but I heard that even if health insurance pays 80% of the cost, it's still very expensive.

I want to find a diet that keeps me at a steady weight (I'm 5'5 and 141lbs, not sure how much that would be in stones) or even lose a little. I'd love to be around 130lbs. I've heard that a low card, high fat diet will help me lose a little weight and can help me use less insulin. Does anyone do this? Or know a better diet?

I want to be better, I want to see my kid grow up. I've already had cataract surgery in both eyes. I have diabetic retinopathy. I was diagnosed with neuropathy about a month after I was diagnosed as type 1. The pain in my feet when my sugar is high can be unbearable. I'll be 29 this year, I want to make it to 89....
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
There's a thread on Neuropathy here. Some people have found that alpha Lipoic acid can help, along with some other supplements and keeping your blood sugar in range.

It's good that you've had your ratios checked and altered. Remember that what's right is what works for,you. This is really important. If your new ratios don't give you good numbers, then let your team know and get them changed. Tight control should help your neuropathy.

Your BMI is around 23. That puts you in the normal healthy weight range. As long as you eat a reasonable diet, then there's absolutely no reason why you should put on weight. Think of what you're going to,eat (maybe plan out a day's or a week's meals in advance), calculate the right dose of insulin, test two,hours after the start of your meal. You can do this. You did it when you were pregnant - kept very good control - and you can do,it now :)

Moderately low carbs is easier to deal with than LCHF, I've found, because on LCHF you need to bolus for,protein and take into account possible delayed rises from fat as well as possible physiological insulin resistance.

Rather than worry about carbs (unless you're eating an excessive amount), why not concentrate on healthy eating - plenty of veg, good quality proteins, some fruit, moderate portions of bread/potatoes/rice/pasta. Trying to fill each day with healthy foods is more inspiring than thinking about what you shouldn't eat.
 
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himtoo

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Retired Moderator
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4,805
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Type 1
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Pump
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mean people , gardening , dishonest people , and war.
why can't everyone get on........
Hi @jessirene
it is lovely to know that the replies are giving you motivation -- that is what I find most comforting about the forum -- knowing that we aren't alone :)
@azure 's advice just above would be my advice too.
and one of the most important things to remember is that this is a long race -- so pacing yourself and not expecting everything to happen immediately helps -- just think little steps:)
 
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Jamesuk9

Well-Known Member
Messages
504
Type of diabetes
Prediabetes
Treatment type
Diet only
If you download librelink on Android from the play store you can read and analyse the sensor without the standalone reader.
 
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catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
If you download librelink on Android from the play store you can read and analyse the sensor without the standalone reader.

OP is in America. Currently Freestyle libre cannot be used and read by the patient in the us. It can only be read by the doctor.
 
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Liverlad

Member
Messages
6
Type of diabetes
Type 1
Treatment type
Insulin
I have been type 1 for going on 12 years now. The only time I was "controlled" was when I was pregnant, I got my A1C down from 13 to 6.4. I'm around 10 right now, but I look at all these post and half of what everyone post makes absolutely no sense to me. I see charts that people post that I've never seen before and other stuff. I am just horrible at this disease. I need to start taking care of myself, I just made an appointment with my Endo so I can get on track but I'm also terrified that getting healthy is going to make me Gaon weight like crazy. I can't be alone in this, am I?
Ive read numerous posts from fellow type 1 Diabetics . As far as weight gain is concerned , I went through a real bad time quite a few years ago. This occurred when my specialist changed me on to LANTUS ( at the time it was being hailed as the best there is ) . I rapidly started to increase body weight ( fat ) . I didn't change my diet , or my exercise regime and my weight increased considerably . I went back to my specialist and told them about the weight gain . They didn't believe me . So I gathered some documentation evidence myself over approx. 4 months , it showed a significant weight gain with 'no apparent reason . Eventually I was taken off LANTUS and put on to LEVEMIR , everything is now in more control , body weight back in control
So the moral to this story is ... Be aware if your increasing weight for no reason . It could be the insulin you are using does not suit you
 

jessirene

Member
Messages
14
Type of diabetes
Type 1
Treatment type
Insulin
Ive read numerous posts from fellow type 1 Diabetics . As far as weight gain is concerned , I went through a real bad time quite a few years ago. This occurred when my specialist changed me on to LANTUS ( at the time it was being hailed as the best there is ) . I rapidly started to increase body weight ( fat ) . I didn't change my diet , or my exercise regime and my weight increased considerably . I went back to my specialist and told them about the weight gain . They didn't believe me . So I gathered some documentation evidence myself over approx. 4 months , it showed a significant weight gain with 'no apparent reason . Eventually I was taken off LANTUS and put on to LEVEMIR , everything is now in more control , body weight back in control
So the moral to this story is ... Be aware if your increasing weight for no reason . It could be the insulin you are using does not suit you
I was on Lantus for a several years, they took me off of it when I got pregnant and put me on Levemir (I guess lantus isn't good for pregnancy) I noticed that even though I was pregnant, I lost a few pounds. I haven't gained any unexpected weight since. My doctor just put me on tresiba
 

GlamD

Newbie
Messages
2
Type of diabetes
Type 1
You are NOT alone...

The biggest fear I had as an adult, was gaining weight whilst trying to be "healthy". With a higher blood sugar, you loose the "hunger" feeling and learn to live without food... Which in turn, helps you to control your weight. In reality, you will gain weight when you have a lower HbA1c and a more "controlled" diabetes but it's not fat, it's stabilisation. The body is really smart - it doesn't want to loose or gain weight, it wants equilibrium, so it will plateau very quickly.

The fear is there and especially if you're a glam girlie, like myself BUT don't be afraid... You can work hard on the diet and exercise side of things but you can't even think about it if the diabetes is "out of control". The struggle is massive and the advice we all listen to or give is positive but the day-to-day blandness of the disease is tough.

Try to approach it worth a clear head and a positive outlook.. I have had diabetes 20 years and I am only 27. The damage I have caused by such high sugars, (from the fear of gaining weight) is irreplaceable now but I would love to help others... I still am glam and try to be as upbeat as possible but understand now we all need to support each other to get through these tough times!!

Aim for one thing to start... Get the AM blood sugar to a target... Let this happen everyday for a month and then add a new goal :). You will feel better and won't struggle with tiredness/exhaustion that comes from high sugars....