I broke the mould!

[Lucyr]

I should have added that the reason I mention it (I wouldn’t normally, don’t think I’ve ever suggested it before!) is that you mention being turned down for bariatric surgery.

This implied to me that you’d considered bariatric surgery and would be willing to try the diet you’d have if you had actually had bariatric surgery. The Newcastle diet seemed a similar diet to the one you’d follow initially after bariatric surgery.

 

[The Odd Diabetic]

Search the Newcastle diet. It needs to be done with a doctors approval but doesn’t involve counting calories because it’s a meal replacement diet ie you replace your meals with nutritionally balanced shakes for a set period of time. It’s used to reverse t2 diabetes and to lose weight. It’s very unlikely to reverse yours but I wonder if in combination with an insulin that you haven’t tried yet (and medical supervision) it could help you manage bgs and weight during the transition back to insulin.

Couldn't pay me to do meal replacement shakes...
They have had me do slim fast, juice plus, all sorts... I've had appetite suppressants, fat binding pills, injectable...
All have left me with life long complications..
Healthy balanced meals is the only way I can do... literally I have been a guinea pig for what ever fad, craze there is...all under medical supervision and the only thing that keeps the weight down, is the healthy balanced meals I have now, super clean eating...
It's so hard, and frustrating

 

[Lucyr]

Couldn't pay me to do meal replacement shakes...
They have had me do slim fast, juice plus, all sorts... I've had appetite suppressants, fat binding pills, injectable...
All have left me with life long complications..
Healthy balanced meals is the only way I can do... literally I have been a guinea pig for what ever fad, craze there is...all under medical supervision and the only thing that keeps the weight down, is the healthy balanced meals I have now, super clean eating...
It's so hard, and frustrating

Sounds like bariatric surgery isn’t for you then. If you gain weight when restarting insulin then try reducing portion sizes of the same foods, or changing the balance to more low calorie veg and less everything else.

 

[The Odd Diabetic]

I should have added that the reason I mention it (I wouldn’t normally, don’t think I’ve ever suggested it before!) is that you mention being turned down for bariatric surgery.

This implied to me that you’d considered bariatric surgery and would be willing to try the diet you’d have if you had actually had bariatric surgery. The Newcastle diet seemed a similar diet to the one you’d follow initially after bariatric surgery.

I have never want the surgery...
It took them 13yrs to even convince me it was a good idea...
They told me it would reverse my diabetes... what they didn't tell me, is that nobody with my kind of diabetic problems has ever had barbaric surgery so there was no guarantee it would even touch my diabetes.
Medication caused my weight gain because it was always high doses, and nearly always experimental, they have never know how to treat me, but always adamant loosing weight would solve all my problems.... 18st lighter and no better off...infact, I have more problems now then ever!
Having been an alcoholic for 13 years drinking meal replacements before was a massive trigger for me, so not something I would ever do again... I'm 14yrs sober and won't risk a relapse. Its not worth it.

 

[The Odd Diabetic]

Sounds like bariatric surgery isn’t for you then. If you gain weight when restarting insulin then try reducing portion sizes of the same foods, or changing the balance to more low calorie veg and less everything else.

Definitely not...they told me I lost too much weight by myself... go figure lol...
My meals fit on a kids plate as it is and I rarely finish that!...

 

[everydayupsanddowns]

What a lot you’ve been through @The Odd Diabetic

And it sounds like you have a good handle on what works for you (and what doesn’t!)

I’m still worried about your levels for you though! And (forgive me if this is too frustrating) I’m interested which different types of insulin you have used, and wonder if there may be some other options which might suit you? Even rarer options like human / porcine as well as the (currently) more common analogues.

 

[The Odd Diabetic]

What a lot you’ve been through @The Odd Diabetic

And it sounds like you have a good handle on what works for you (and what doesn’t!)

I’m still worried about your levels for you though! And (forgive me if this is too frustrating) I’m interested which different types of insulin you have used, and wonder if there may be some other options which might suit you? Even rarer options like human / porcine as well as the (currently) more common analogues.

With insulin there is such a high weight gain risk, I struggle so much already with mobility, sight loss, muscle wastage... I cant risk gaining any more weight.
I have just started going to a wellness suit with assisted machines to help my muscles tone to be able to support me better... I suffered a cluster fracture to my right hip back in 2013 and I was left with it to heal...no rehab to walk properly ... just left... so over time I have inadvertently caused more damage, that means I need surgery on both hips, and my spine needs breaking, pinning & plating.... so any weight gains will further jeopardise that...
That and I don't want to gain weight JUST to get better levels... thats not healthy in any way!
I'm my original post I have listed medication I have been on, the insulin is listed there.

 

[Lucyr]

Insulin is the only way you’re going to improve your bgs from the sounds of things. There’s loads of types of insulin you haven’t tried and might not react to.

You will have to just accept that you’ll need to deal with whatever happens with your weight when you find the insulin that you don’t react to I’m afraid, and adjust your food intake to make it work. Otherwise youll be really ill with worse diabetes complications.

 

[The Odd Diabetic]

Insulin is the only way you’re going to improve your bgs from the sounds of things. There’s loads of types of insulin you haven’t tried and might not react to.

You will have to just accept that you’ll need to deal with whatever happens with your weight when you find the insulin that you don’t react to I’m afraid, and adjust your food intake to make it work. Otherwise youll be really ill with worse diabetes complications.

Food isn't the issue for me, it never has been... I have been on clinical trials for medication in the past, so I'm not closed off from trying new things, but in 32 years my body has been to hell & back more times than I can count, I've lost pregnancies because of servere side effects, gaining more weight just isn't something I'm willing to just accept.
Gaining more weight will leave me bed bound, hypertensive, and have damaging impact on my mental health..

I need the consultants & specialists to pull there fingers out and figure out what the hell is going on, and work together to find a suitable solution.

I'm just here to see if there is anyone out there who shares even 1 symptom I have that's not a typical diabetic issue...

 

[everydayupsanddowns]

That sounds so difficult for you!

I have been taking insulin (about 8 or 10 different varieties) since my 20s, and while my weight has gone up and down a little, I am currently approximately the same weight as I was 30 years ago. So I don’t think insulin is inevitably associated with weight gain.

I know that when I eat more I gain weight… and that over the years I need to eat less to maintain the same weight (ie when I was younger I could eat more than I can now).

Someone I know experienced unusual weight gain with one particular insulin, but was able to switch to a different one and recovered equilibrium.

Insulin allows you to access energy in food (and allows surplus energy to be stored), but I still am not sure that is a cause of weight gain in and of itself. At least, not in all cases?

 

[ianf0ster]

Adding external Insulin doesn't have to mean more weight gain. It all depends upon how well you balance it with your diet.
Sorry, but I'm not an expert, so I can't tell you how to balance them (even if it was allowed). It's that balancing that is the hard part because Diabetes isn't very predictable

 

[everydayupsanddowns]

I'm just here to see if there is anyone out there who shares even 1 symptom I have that's not a typical diabetic issue...

It’s no wonder you are frustrated @The Odd Diabetic

You’ll have to forgive us for coming back with our own experiences of how diabetes has behaved for us. Because while some of us have experienced some similar symptoms (eg significantly raised BG levels) we can really only reflect what has helped us - even if these are things you‘ve already tried in the past

 

[The Odd Diabetic]

That sounds so difficult for you!

I have been taking insulin (about 8 or 10 different varieties) since my 20s, and while my weight has gone up and down a little, I am currently approximately the same weight as I was 30 years ago. So I don’t think insulin is inevitably associated with weight gain.

I know that when I eat more I gain weight… and that over the years I need to eat less to maintain the same weight (ie when I was younger I could eat more than I can now).

Someone I know experienced unusual weight gain with one particular insulin, but was able to switch to a different one and recovered equilibrium.

Insulin allows you to access energy in food (and allows surplus energy to be stored), but I still am not sure that is a cause of weight gain in and of itself. At least, not in all cases?

Insulin has always been a risky venture for me...
My daily levels have always been between 15 & 30 mmol.... my HbA1c always between 10% & 15%....

Even with insulin the HbA1c doesn't change... my daily level bottom out!... I'm talking 2ml of any of the insulin I've had, will send my levels through the floor...1.2.... then I'm in hospital, in HDU...
Twice now my local hospital have pit me in intensive care because they see my levels and instantly give me insulin...
Now I don't know what type they give me, and from what I see of my discharge papers it just says insulin....
My levels crash, then I'm unconscious, then my face swells, then my hands, a d the rest of my body....
Seriously...nobody has a bloody clue, and it gets dangerous experimenting with meds with no idea what the outcome will be.

Also, when pregnant my diabetic symptoms disappear...levels are between 3.5 & 6.5.... no medication... nothing but being pregnant....nobody can explain that, as all the textbooks say, diabetic mums will need lots more insulin ... and both my surviving babies were low birthweight , so not huge as they tell you they will be... my son was the same as ne at 2lbs 9oz... my daughter a healthy 6lbs 7oz.... there really is no explanation for it.

 

[Leadinglights]

It really is a terrible situation you are in, I looked up insulin allergy and came across a report about a child in America who has allergies to every insulin he has tried and has to take other medication (methotrexate) to even tolerate the insulin. Manufacturers of the insulins have been no help. But it would appear there is some research going on.

 

[The Odd Diabetic]

Adding external Insulin doesn't have to mean more weight gain. It all depends upon how well you balance it with your diet.
Sorry, but I'm not an expert, so I can't tell you how to balance them (even if it was allowed). It's that balancing that is the hard part because Diabetes isn't very predictable

I have a well balanced clean diet, have done since getting sober 14 years ago... lost 18st in the process and it's still no better.
It's confusing and frustrating.

 

[The Odd Diabetic]

It’s no wonder you are frustrated @The Odd Diabetic

You’ll have to forgive us for coming back with our own experiences of how diabetes has behaved for us. Because while some of us have experienced some similar symptoms (eg significantly raised BG levels) we can really only reflect what has helped us - even if these are things you‘ve already tried in the past

I know, and I still really appreciate EVERYTHING that everyone is giving in their replies... even if its something I have done many times over... I can show this thread to my specialist to prove I am actively trying to find new ways to do things... it all helps in the long run, and I truly appreciate everyone's input.

 

[everydayupsanddowns]

Sorry to persist with the insulin questions… but were you taking 4x or 5x injections a day (sometimes called basal:bolus or MDI) where you can adjust and fine tune doses to match individual meals, as well as your background insulin needs?

If only one 1x or 2x insulin doses a day, I wonder if the type of insulin treatment you’ve been offered before was just too clunky for you?

 

[The Odd Diabetic]

It really is a terrible situation you are in, I looked up insulin allergy and came across a report about a child in America who has allergies to every insulin he has tried and has to take other medication (methotrexate) to even tolerate the insulin. Manufacturers of the insulins have been no help. But it would appear there is some research going on.

That research will sadly be years before it crosses the pond to the UK lol... but I am hopeful that even if they can not help me... it will help those who come after me... hopefully.

 

[The Odd Diabetic]

Sorry to persist with the insulin questions… but were you taking 4x or 5x injections a day (sometimes called basal:bolus or MDI) where you can adjust and fine tune doses to match individual meals, as well as your background insulin needs?

If only one 1x or 2x insulin doses a day, I wonder if the type of insulin treatment you’ve been offered before was just too clunky for you?

I started with a basal insulin and a rapid acting that I had twice a day. They then increased it to 3 times a day before meals... I had to plan the meals to match the doses... I ended up on hundreds of units per injections, drawing up from bottles as prefilled pens didn't go high enough.... at 1 point I was having 196 units of rapid acting 3 x a day as well as a basal , metformin, pioglitazone and saxagliptin... as well as omeprozole, cyclizine and domperidone to try and counteract the side effects....

 

[Lucyr]

I started with a basal insulin and a rapid acting that I had twice a day. They then increased it to 3 times a day before meals... I had to plan the meals to match the doses... I ended up on hundreds of units per injections, drawing up from bottles as prefilled pens didn't go high enough.... at 1 point I was having 196 units of rapid acting 3 x a day as well as a basal , metformin, pioglitazone and saxagliptin... as well as omeprozole, cyclizine and domperidone to try and counteract the side effects....

There’s no maximum insulin dose, you need as much as you need. There are more concentrated ones available now which it sounds like you haven’t tried yet, for those who need high doses.