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Yes I wondered about u200 or u500 insulin too - makes for a much smaller volume of fluid for the same strength of dose, which I think can improve absorption?
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I broke the mould!
- Thread starter The Odd Diabetic
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Yes I wondered about u200 or u500 insulin too - makes for a much smaller volume of fluid for the same strength of dose, which I think can improve absorption?
Lucyr
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Yes I was told they improve absorption as it’s a smaller volume of liquid injected, keep meaning to ask about u200 basal myself as I take 40u and so split it into 2 injections currently.
Different insulins also have different preservatives in them so there should be one you don’t react to. The other thing to make sure you try different ones of is the needles as they also have a coating you could be reacting to, but again different ones use different things.
The Odd Diabetic
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I had reactions even when on a drip in HDU, I've never been opposed to trying things, I've done 3 medical trials for medication that's now on the market, but after years of trials my body just reacts to everything they try...
For almost 5 years now they see me in clinic, say well done for continuing to loose weight, and send me home... they don't see worried, regardless of how worried I am.
Inka
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I’ve also had the following insulin therapies;
Novarapid, Novamix, Lantus, Levemir, Humalog, Toujeo.
All of those insulins are analogue insulins - ie not technically insulin at all. It might be worth trying the other two types: human and animal. Some people simply can’t tolerate the analogues well. Porcine insulin is thankfully still available. You could try small amounts of that and see how you get on maybe. I know you’re concerned about weight gain but, again, some insulins work better for some individuals than others. There have been studies showing, for example, Lantus causes more weight gain than comparable insulins.
There’s also the option of the original human insulins - things like Humulin. Some people get on ok with these but not the analogues.
Your problems sound complex. I assume you’ve had other tests to look for rare things that can cause diabetes, particularly unusually presenting diabetes.
Novarapid, Novamix, Lantus, Levemir, Humalog, Toujeo.
All of those insulins are analogue insulins - ie not technically insulin at all. It might be worth trying the other two types: human and animal. Some people simply can’t tolerate the analogues well. Porcine insulin is thankfully still available. You could try small amounts of that and see how you get on maybe. I know you’re concerned about weight gain but, again, some insulins work better for some individuals than others. There have been studies showing, for example, Lantus causes more weight gain than comparable insulins.
There’s also the option of the original human insulins - things like Humulin. Some people get on ok with these but not the analogues.
Your problems sound complex. I assume you’ve had other tests to look for rare things that can cause diabetes, particularly unusually presenting diabetes.
Lucyr
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It’s probably the type of insulin you reacted to then, you haven’t really tried many different types, try some more?
The Odd Diabetic
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I can only try what the specialists prescribe me... and I can't have anything that will make me gain weight, my body is already under so much strain from the weight I used to carry, if I put in even a few pounds I can barely move, then I become bed bound again, and I can't risk that.
So it's not as simple as running through every insulin known to mankind lol
Lucyr
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To be frank, with n a1c of 14-15% you’ll die from diabetes complications unless you find an insulin that works.
It isn’t a case of if you take 1u of insulin you’ll suddenly gain several stones.
You need to be both more proactive in asking to try specific types of insulin, and more open to trying things. At the moment you’re just saying no to every suggestion.
The Odd Diabetic
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Not at all...
I have done many medical trials in my time, some have worked but only for a short period of time before they stop and cause more complications.
Having a complex case of diabetes is just that... it doesn't follow any text book, everything is trial and error, and sadly my consultants & specialist are not in a hurry to do anything despite me calling up monthly !
I'm not sure what more I can do
The Odd Diabetic
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I've been tested for cushings syndrome, and a couple of other genetic conditions, those all came back negative.
My diabetes doesn't behave like textbook cases, it's almost like the opposite happens.
Lucyr
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Make an appointment or leave a phone message for a call back specifically asking to try one of the different insulin types suggested further up the thread at a low dose. You could ask at the same time whether taking any antihistamines would be a precaution worth considering too, and what to do if you have a reaction.
The Odd Diabetic
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I call every month to chase things, I leave messages, I always make suggestions for different medications, I am Just constantly told that they aren't suitable, or contain ingredients I am sensitive too, or are part of the same family of medication I have had previously.
So it's not like I'm not trying , trust me it's infuriating! I am literally banging my head on a wall.
Inka
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When I changed insulin, I literally had to tell my consultant what I wanted. They have to give you the insulin that suits you and with your history, you could insist on trying one of the other groups as I detailed above. They’re different from the analogues, and it’s totally worth a try (as long as it’s safe, of course). As @Lucyr says, you could start with tiny amounts just to see if you can tolerate them better.
If they try to tell you the two groups mentioned above are the same as the analogues, speak to IDDT. They’ve done a lot to publicise problems with newer insulins. Porcine insulin (from a pig) is different from human insulin (which is GM to resemble human insulin) and both of those are different from the analogues you’ve tried. The analogues aren’t technically insulin as they’ve had molecules swapped around/added to (apologies for the non-technical information). So, people might tolerate one family but not another.
It must be so frustrating for you. You’re doing well to keep pushing.
Inka
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@The Odd Diabetic I came across this when replying to another member:
https://academic.oup.com/jes/article/6/Supplement_1/A397/6788839#
Could you be getting insulin oedema rather than an allergic reaction? I thought of it because you mentioned the swelling.
https://academic.oup.com/jes/article/6/Supplement_1/A397/6788839#
Could you be getting insulin oedema rather than an allergic reaction? I thought of it because you mentioned the swelling.
Pumper_Sue
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Hello and welcome to the forum.
Wow it does sound as if you have been through the mill
This is just an off chance suggestion.......... have you tried using pork insulin? If you haven't worth a try.
The Odd Diabetic
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Thankyou, and yes I've been to hell & back severL times over lol... I have only tried the ones I've listed... I've been told others aren't suitable because of sensitivity & allergies...Hello and welcome to the forum.
Wow it does sound as if you have been through the mill
This is just an off chance suggestion.......... have you tried using pork insulin? If you haven't worth a try.
Pumper_Sue
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I would challenge the pork insulin though.
Medics tend to say it's not available anymore and any excuse under the sun is given not to prescribe it. This is due to either not having prescribed it or old wives tales about it. Have a good delve in this site https://www.iddt.org/?cn-reloaded=1
The Odd Diabetic
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Thankyou I will
Proud to be erratic
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@The Odd Diabetic
If they have not previously encountered your particular problem or the medication that might help, I have found 'resistance' to be the easiest solution for the ' experts'. It is unprofessional behaviour on their parts, but the reality is that this poor stance can exist. One good thing about being unwell and unable to do much physically is having the time to pester and chase to get a better outcome. That "chasing" has also led to my better understanding of the medical background to the problem.
@Pumper_Sue's observation has been my personal experience with 2 DSNs and 2 Consultants, from 2 Trusts in different Counties.
If they have not previously encountered your particular problem or the medication that might help, I have found 'resistance' to be the easiest solution for the ' experts'. It is unprofessional behaviour on their parts, but the reality is that this poor stance can exist. One good thing about being unwell and unable to do much physically is having the time to pester and chase to get a better outcome. That "chasing" has also led to my better understanding of the medical background to the problem.
I hope you are still monitoring this.
I came across your post while searching for others with seeming allergies to insulin. I’m so sorry you have had to endure that. Being medically ann outlier isn’t an easy thing. Many doctors will not listen.
My partner was diagnosed T2 upon presentation to ER after months of dry mouth and frequent urination at night. His reading was 16.3 - he had just consumed a can of full sugar coke. That was altered to type 1LADA by a registrar. He commenced insulin straight away and as his ex wife was diabetic he knew the drill.
However, within a couple of months he started to get lumps and suppurating sores at injection sites. Wherever he injected would turn so hard he had difficulty getting insulin in - it would sometimes squirt out. Was told to inject in other areas which he did - with the same result. His readings also started to become erratic. He was hypoing some days on the same dose that the day before worked fine. His diet had always been low salt low sugar so it wasn’t that he was indulging in junk one day and low carbs the next. Sometimes he would hypo twice a day. He was told by the endo to ‘take MORE insulin’. We went private because that was just madness.
No doctor would listen. On his paperwork his diagnosis would vary from T1LADA to T2 insulin dependent to poorly controlled T2 and back to T1. He was literally crippled by insulin. When injecting he would suffer cramps, extreme weight gain, and mental fog. Now he would hypo on a dose that would barely control his sugars the week or day before. There was no logic or consistency. The hypos were debilitating.
In order to work he would have to take insulin holidays. Which he knew were damaging but he couldn’t function on insulin either.
We asked many many times to try Type 2 tablets. But no doctor would allow that.
We moved and he wasn’t working so decided to just suffer the insulin consequences. He was physically and mentally wrecked. Seven hypos over 24 hours with readings as low as 0.8. I have experienced awakening to my husband in a cold sweat barely conscious having some kind of fit. Still no investigations were done. He couldn’t move he was in so much pain. I had to dress bathe and assist him in tasks. He wanted to die. He decided that life in that state was not worth living.
Then I caught flu. Gave it to him. He stopped taking his insulin. After 5 days he felt a bit better got up and COULD MOVE without pain. He could wipe his own bottom and he got himself dressed. He decided no more insulin.
He got better every day - up to a point. Obviously those years of seesawing readings had caused considerable neurological damage. But he felt so much better. He returned to his endo. They said - ‘you must be a type 2’ and prescribed him Jardiance and gliclazide - his readings are now around 5.9 and solid as a rock. His HBA1C is 6.
It had been 10 whole years of being treated as insulin dependent T1.
He was a type 2 all along. If only one doctor had listened to us. Even after 5 years it would have made a difference.
So, while your stories are different please be reassured there are others that don’t conform to the norm in terms of their condition. Not being textbook is dangerous.
I’m not sure what can be done. Ppl have such fixed ideas around diabetes. My partner was repeatedly humiliated and shamed by medical professionals. He was told he was being obtuse, non cooperative, incapable and incompetent. Laughed at for suggesting T2 medication.
I wish you ALL the luck in the world and hope you get your diagnosis or at the very least a treatment plan that WORKS.
What happens if you take the birth control pill?
Have they checked your thyroid (I would presume they have)?
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