brittle diabetes?

Hi Hannah,
Have you been tried on non analougue insulin's? I asked as when I show allergic reactions to a an insulin like you I go from 0-50 and back down again within an hour.
Anemia can be caused by metformin, no idea why a young lass like you has been put on it either :shock:

Why is the pump out of the question for a year? If you need a pump then your PCT must provide the funding for one.
If you are having loads of hypos then ask to be tested for addison's disease as well.
Hope you manage to sort yourself out soon.

Hmm!

Ok so some thoughts..

1. You say that you have tried a number of basal insulins but have you done fasting tests to make sure that the dose is accurate? Basal profiles aren't flat and therefore rapid increase or decrease in blood glucose is often down to incorrect Basal. That would be my first check... Even being a few units out I find can give massive swings.. I have a gut feeling you are talking to much basal.. if 1 unit of rapid can make you hypo on say 20 - 30g of a low carb meal then that's pretty sensitive.. 21 units of basal therefore seems like a lot to me... hard to say without knowing your weight and carb intake.

2. You have a number of other medical conditions that I assume you take medication for? If so I would check that the medication doesn't have an effect on blood glucose.

3. Metformin is an odd one for a type I... now I tried it myself and found that sometimes I would have an effect and sometimes I wouldn't.. certainly it had an effect on high carb meals but limited effect on meals with high protein high carb.. As it messed up my carb ratio's I stopped taking it..

Can I ask what basal's you have tried... I was on Levemir and before that Lantus both of which I needed over 200u (yes two hundred!) a day. I swap to Insulatard which is an older style basal insulin and I reduced that to around 70u a day. You may find that these new style basal insulin's simply don't work.

analogue insulins are synthetic or man-made insulins; you can get really 'old style' animal insulins. As modern insulin is a man-made chemical and differs from natural animal insulin some people find that it doesn't work or they have reactions to it..

hannah95 said:

i was on a mixtard (which is human? ) for a loooong time till i was about 12 (i was diagnosed at 2) but didnt work that great but i suspect that was because i wasnt very well informed and neither was my old doc.

ive been on both levemir and lantus as a basal but the doctor has said neither work great. hes never mentioned anything about these older insulins to me. how long does insulatard last?

Click to expand...

Insulatard lasts for around 14 - 18 hours... It has a peak in its profile unlike Levemir or Lantus.. and typically is most effective between 8 - 10 hours.. this makes it particularly good for dealing with DP.. as you can use the peak to cover say 4 - 6am.. You do need to inject twice / day.. but as you are split anyway that's no different.

Hi Hannah,

I have had brittle type 1 for a long time now, ever since I was 5 years old. I do remember that during my puberty I had insane problems with insulin types and in those days we didn't have analogue ones. The massive peaks are not good something needs to be done about them. As mentioned earlier might be worth trying an old style basal (I currently use Hypurin Porcine Isophane - lasts for about 20hrs, I take 2 of those a day as well) they tend to be a little more stable and have less side effects.

One other thing you should ask to be checked out are your hormones, they can have an impact on your glucose readings as well. Generally, in female diabetic patients there is a tendency to over produce growth hormones which increase blood glucose levels by increasing insulin resistance. I won't bore you with the science but your Endocrinologist should really have a look into those for you specially with such 'wild' shifts in readings.

Frankie

Hi Hannah, just a wee question, when you was on the Lantus, did you have weight gain?, just I used to be on it, had bad weight gain, but also know of 3 other people who had same problems, yet @ the time the DSN's and the consultant said it was unrelated, yet when they changed me to levimir that was one of the reasons they gave for changing me....just really to satisfy my own couriosty..

Bob

Hi Hannah
I have had brittle diabetes since i was 2 (30 years now) & have just had a son. I have been on the pump for 4 years and i had to fight for it!
1. Your 16 so your body is going through a lot of changes & that will cause problems.
2. Was your weight loss recent? Or is it fluctuating? If yes to one or both then that will be part of your problem. Try stabalizing your weight as this will help to set a level for you to then sort out your doses. When you loose weight you also need to loose some insulin and vise versa when you gain. You probably know it anyway by what you have said.
3. How emotional are you? Stress & excitement can affect you same as the weather. Hot weather can bring on hypos as the body works harder to keep cool. Might be cold does the same. I have trouble with both. Not helpful in itself but good to be aware of.

First step go buy book "Pumping Insulin" 4th ed by Walsh & Roberts. This book is designed for pumpers but it has a lot of tools & tips you can use & it explains how insulin works in the body. Once you understand insulin & how the body absorbs it you can make changes & understand what happens. This book was done for america but it has been translated for us in the uk.
Second look up NICE guidelines on diabetics as this will give you the amunition for a pump.
Look up a group called Insulin Pumpers they will help you with your fight for a pump & have loads of helpful info.

How far away from you is the nearest established pump clinic? If you can travel to it get yourself transfered to it. You don't have to stay with the docs your with.

Testing your basals is a good idea but test one at a time i.e. morning then evening then night. Better still try evening first but be ready for hypos. Once you have a good idea of whats going on make one. Change then start testing again. Its a slow process and you will get tired of it but keep going. Remember any changes weight, emotions (long term), weather, general health will affect it so be prepated to start again.

Hope this helps and good luck.

Well done on the weight loss & hope you passed the exams.
As for your control changing - thats normal for brittles, welcome to the club...

Keep complaining & pushing for the pump as it has given me a new life & allowed me to safely have my baby.

How is your hypo awareness? If you loose that you must let docs know.

If you can get that book it will help you lots before you get the pump & afterwards (Amazon should have it).

What you need to remember is it's your diabetes, only you know it properly & only you can take control of it the nhs are there to help. If they give advice that doesn't work go back a step & try something else because what works for one person might not work for you.

Good luck with dp & other basal. Have you tried changing the times of your basal doses?