Intolerant to Insulin

[Twigmarble]

I have multiple chemical sensitivities and I can't handle insulin; it makes me extremely ill. They tried me on pork insulin but that also contains harsh synthetic chemicals which I'm intolerant to. I've been living with extremely high blood sugar as a result of not being able to take insulin and I'm so ill and fed up of feeling like this. I don't know what to do so can anyone help please?

Please don't suggest that it's better for me to be on the insulin if I'm ill on or off it because on insulin it was far worse and I'd rather die than feel like that every day!

I'm a type 3c diabetic but although I've told them this multiple times they haven't taken steps to change my diagnosis from type 2. They haven't found a way to help me with the insulin intolerance; they just say I should take it full stop.

 

[EllieM]

Hi @Twigmarble, I'm so sorry to hear of your difficulties.

I have a few suggestions to make.

The first is that if you are T3c you presumably make some insulin. Have you tried ultra low carbing to see if you can bring your insulin needs down to the point where your body can cope?
Have you had a cpeptide test to see how much insulin your body is producing?

The second is about the insulin. There have been a few posts on here by people who have insulin allergies, so you are not alone. Usually the problem is not the insulin, it's the preservatives that are put in it. So there may well be a brand that you can cope with. Alternatively, you could consider specialist medical help to desensitise you to at least one brand of insulin? ie you need an allergy specialist. Are you seeing hospital specialists now? (Your condition definitely sounds beyond the competence of most GPs).

There have been a few threads by others that have had this issue. The one below is particularly informative, with a lot of interesting links.
Allergic to Insulin?? | Diabetes Forum • The Global Diabetes Community


Good luck.

 

[Twigmarble]

Thanks for the suggestions; you've given me some hope!

I was on the keto diet for 5 months but it gave me diarrhoea and as soon as I stopped it and ate more carbs I felt much better. I was prescribed Creon capsules to help me digest fats years ago. I'm extremely thin and the problem with low carb is that I'd have to raise my fats and/or proteins and the liver can change proteins into sugars if not enough carbs are eaten.

I've been changing and tweaking my diet for many years and how I eat now is about the best I can get it so that I'm satisfied and not hungry all the time like I used to be when on low carb, but it's as healthy as possible. It's mostly plant based but with some chicken and organic sausages, and I get most of it from an organic farms association so it's very clean food and it doesn't cause food intolerance reactions.

They haven't given me any tests, despite my telling them that I need my pancreas to be tested. The diabetic nurse is completely ignorant about type 3c and she hasn't even bothered to find out anything about it. The only response I've had since telling them I'm intolerant to the insulin is disbelief, treating me as though I'm a fool, and telling me I should take it. I need to talk to the practice manager I think about seeing an allergy specialist. Thank you again!

 

[EllieM]

They haven't given me any tests, despite my telling them that I need my pancreas to be tested. The diabetic nurse is completely ignorant about type 3c and she hasn't even bothered to find out anything about it. The only response I've had since telling them I'm intolerant to the insulin is disbelief, treating me as though I'm a fool, and telling me I should take it. I need to talk to the practice manager I think about seeing an allergy specialist. Thank you again!

I suggest you also push hard for a referral to an endocrinologist.... If you've managed to make your 3c diagnosis official then I would have thought that you have a good case for needing a specialist who understands non T2 diabetes. They would certainly be able to authorise any additional testing you need.

Good luck again.

 

[Twigmarble]

As I said in my original message 'I'm a type 3c diabetic but although I've told them this multiple times they haven't taken steps to change my diagnosis from type 2'. I have a comorbidity which makes this very difficult. I have severe ME/CFS and I've been virtually bed bound for 16 years so hospital trips will be very difficult, but I'm willing to do them if the doctors would offer the tests. I've asked for the correct diagnosis so many times but they change the subject every time. It's like talking to a brick wall!

 

[ert]

As I said in my original message 'I'm a type 3c diabetic but although I've told them this multiple times they haven't taken steps to change my diagnosis from type 2'. I have a comorbidity which makes this very difficult. I have severe ME/CFS and I've been virtually bed bound for 16 years so hospital trips will be very difficult, but I'm willing to do them if the doctors would offer the tests. I've asked for the correct diagnosis so many times but they change the subject every time. It's like talking to a brick wall!

How were you diagnosed as type 3c? Should you be under the care of a specialist?

 

[Twigmarble]

I haven't been diagnosed with type 3c yet. I just know that's the one I have. I came across 3c in these forums last year and everything fit into place when I started reading about it.

I have good news. The diabetic nurse must've listened after all because I just got a timely phone call from someone at the hospital and they're going to arrange a blood test to get me the right diagnosis and find out if my pancreas is producing any insulin.

Ellie I told her what you said about needing an allergy specialist and an endocrinologiest so the ball is rolling. Thanks again!