I broke the mould!

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The Odd Diabetic

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Hi there.
I was diagnosed as type 2 diabetic back in 2001, at a healthy weight for my height of 10st 2lbs... I was instantly put of metformin, which turned my poor body inside out!
There followed a plethora of medication, all of which caused more health conditions than I had, and none helped with my rising glucose levels.
I've been on the following tablets;
Metformin, Avandia, Gliclizide, Rosiglitazone, pioglitazone, Repaglinide, Sitagliptin, Linagliptine, Saxagliptin, Dapagliflozin.
I've also had the following insulin therapies;
Novarapid, Novamix, Lantus, Levemir, Liraglutide, Dulaglutide, Humalog, Toujeo.
I have also been prescribed Trial weight loss injectables;
Orlistat, Exenatide, Xultophy, Degludec & Liraglutide combo.

I feel like a human guinea pig, with no let up.

When pregnant, my diabetic symptoms disappear and no medication is needed, this has been proven by all 7 of my pregnancies (5 Angel babies & 2 surviving children)

Due to domestic violence I was a chronic alcoholic and very much in denial for 13 years.... 14 years sobber here!!! Left the Ex, since re-married, and alot better for it!

at my heaviest I was 29st 8.5lbs... (2008)
At my lowest 12st 2.5lbs.... (2021)
Now back up at 14st 7.5lbs.... (2023)

I have been left uneducated for 5 years as the medical professionals in charge of looking after me have literally NO IDEA what to do with me...

I have been turned down for barbaric surgery as I have lost too much weight myself by changing my diet and lifestyle, I've been promised genetic screening for a rare genetic diabetes, but this is yet to come to fruition ... I have many health conditions associated with auto-immune problems, Elhers Danlos, Fibromyalgia & Athritis.

Ive been told to look for help, guidance, support here at Diabetes UK, so please , can anyone help me.... I not only feel very alone, but I actually appear to be very much alone.....
 
Sorry to hear what a very difficult time you have had over the years @The Odd Diabetic :(

We have all sorts here, with unique and individual experiences of diabetes. Some ‘classic cases’, and some undefinable ones too 🙂

Sounds like you were fairly young and a normal weight at diagnosis - which might suggest you were T1 or LADA all along, except for the way your diabetes symptoms disappeared during pregnancy - which is completely not what happens in T1!

But then you have other autoimmune conditions - and they do seem to cluster together, so perhaps your diabetes is autoimmune in nature after all?!

Well done on your 14 years sober - thats a huge thing.

What meds are you currently taking to help manage your diabetes?
 
Thankyou
I am not currently medicated...and haven't been for almost 5 years now.
My HbA1c runs between 14 % & 15%.
Daily finger prices between 12 & unreadable mmol.

I am unable to exercise due to spinal nerve compression, a d have lost weight by sticking to Slimming world...

Even with my huge weight loss, my iver all levels are still ridiculously high...

So, no medication at all..
Just making sure I keep eating the right stuff, and hope someone can help... before it's too late!
 
The Odd Diabetic said:
I am not currently medicated...and haven't been for almost 5 years now.
My HbA1c runs between 14 % & 15%.
Daily finger prices between 12 & unreadable mmol.
Click to expand...

Why on earth are you not on insulin? With levels that high it seems pretty obvious (to a medically untrained mind) that you need some exogenous insulin to balance your glucose levels.

What happened when you tried insulin before? And what level of training did you get to adjust doses yourself?

Hopefully you can find a system that begins to gently lower your levels. High BGs like that must be making you feel pretty grim, and can’t be doing your body any favours :(
 
Sadly I became super sensitive to insulin, I have a servere allergic reaction, I began to swell everywhere on my body, and retain fluid... I gains 5st in fluid retention and became bed bound...
I have always had to titrate my insulin levels as I was only seen once a year...
I am un medicated because they don't seem to be bothered about finding a treatment that will work but not make me gain weight...
I've lost 18st by myself, and every medication they try sees me gain huge amounts...and I'm not willing to go through that.

They even suggested high insulin does to control my levels....and told me "it doesn't matter how much it makes me gain as they will do a bypass surgery and I'll loose it all again anyway"... that I just find disgraceful... all the weight I gained was because of medical trials and medication unsuitable to me condition... yes, being an alcoholic didn't help, but I got sober, lost 18st, and it hasn't touched my levels 1 bit...nor has medication..

I've never met anyone whose diabetes is even a smidge like mine!
 
The Odd Diabetic said:
I am not currently medicated...and haven't been for almost 5 years now.
My HbA1c runs between 14 % & 15%.
Click to expand...
Why did you stop taking insulin and all the medications you’ve have previously? Is this with medical advice that you stopped insulin? You haven’t tried every insulin available if you had reactions to the few you’ve tried you should have tried others.
 
The Odd Diabetic said:
I have always had to titrate my insulin levels as I was only seen once a year...
I am un medicated because they don't seem to be bothered about finding a treatment that will work but not make me gain weight...
Click to expand...
It’s normal to titrate your insulin doses yourself, you can’t wait for a clinic appointment to adjust doses when you’re on insulin.

You’re probably finding you gain weight when you improve your bgs because you’re currently losing weight through unhealthy means with bgs so high. Your body needs more nutrients and will be able to use the food you eat when you have better bgs. That might mean reducing your calorie intake as you improve bgs to maintain your weight, because right now your body can’t use the food you’re eating.
 
Lucyr said:
Why did you stop taking insulin and all the medications you’ve have previously? Is this with medical advice that you stopped insulin? You haven’t tried every insulin available if you had reactions to the few you’ve tried you should have tried others.
Click to expand...
All medications were stopped by my endocrinologist after each one presented servere side effects, most medication did the opposite to what it should... my levels went up, and I continued to gain weight .
All insulin that I have been given I became sensitive to, and that left no other options because of ingredients used in the different mixes.
I am under specialists at Kings College Hospital in London, and waiting to be seen at a specialist genetics clinic for further testing...
My body responds the opposite to what it should do, it's confusing & frustrating... believe me...I am the 1 living like crappie as a result!
I dont stop medication through choice, it's a necessity due to adverse side effects... some of which have seen me admitted to HDU and intensive care ... its no fun being a human guinea pig lol.
 
Lucyr said:
It’s normal to titrate your insulin doses yourself, you can’t wait for a clinic appointment to adjust doses when you’re on insulin.

You’re probably finding you gain weight when you improve your bgs because you’re currently losing weight through unhealthy means with bgs so high. Your body needs more nutrients and will be able to use the food you eat when you have better bgs. That might mean reducing your calorie intake as you improve bgs to maintain your weight, because right now your body can’t use the food you’re eating.
Click to expand...
I've lost 18st through healthy eating... I already eat low calorie food, no sugar, low sugar, low fat, no bread no white potatoes, brown rice, .... not sure where else I can reduce calories or cut things out...
 
That sounds awful @The Odd Diabetic I was just wondering if something like an iPort would help? Do you know if it’s a reaction to the insulin itself or to a preservative or something in it?
 
The Odd Diabetic said:
No idea to be honest, and nobody seems to be in ahurry to find out!
Click to expand...

That’s dreadful. I wonder if Diabetes U.K. would know of similar cases and hospitals or consultants with an interest in this sensitivity? It might be worth contacting them. Somebody must be researching this.
 
The Odd Diabetic said:
I've lost 18st through healthy eating... I already eat low calorie food, no sugar, low sugar, low fat, no bread no white potatoes, brown rice, .... not sure where else I can reduce calories or cut things out...
Click to expand...
How many calories are you eating, could you reduce those or try the 800 calorie meal replacement diet?
 
Inka said:
That’s dreadful. I wonder if Diabetes U.K. would know of similar cases and hospitals or consultants with an interest in this sensitivity? It might be worth contacting them. Somebody must be researching this.
Click to expand...
I'd like to think so ...but as far as I am aware there is only 1 physician that is, and that's who I am waiting on.
 
Lucyr said:
How many calories are you eating, could you reduce those or try the 800 calorie meal replacement diet?
Click to expand...
Don't know what the 800 meal replacement diet is, I am past counting because it has such a negative affect on my .entail health over the years... I am a slimming world member with an 18st loss, I have healthy balanced meals, no sugars, no processed foods, no bread, everything is in its natural state, as I have developed food sensitivities , again as a result of medical trials over the years...
I did a fodmap diet about 4 years ago and that eliminated 100s of foods I cant tolerate now,
But to be honest, there is very little support locally, especially if you aren't type 1, type 2 or bloody pregnant! Lol
 
The Odd Diabetic said:
Don't know what the 800 meal replacement diet is, I am past counting because it has such a negative affect on my .entail health over the years
Click to expand...
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.
 
The 800 calorie a day is a shakes- based regime, some people have tried it with some success but they are not quite in your situation. Look up Newcastle Diet in the search.
 
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