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brittle diabetes?

H

hannah95

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im a 16 old been diagnosed since i was 2 (so nearly 15 years now). my last a1c was 8.8, down from 10.2 last january.im on levemir twice daily (9u and 13u) and novorapid carb counting and metformin. i actuallly have underactive thyroid and anemia too, if thats any help.

i came out the rebellious phase and started getting in control i was in quite good control for about 11 months until november (ranged 4 to 12). however ive always had a slight problem with hypos on whatever basal i try. but then all of a sudden my bloodcounts went absolutely crazy my doses have been cut in half and my bloodcounts still massively fluctuate i can go from 25 to 3 within 2 hours. last night i ate about 60 g carbs and went from 18.3 to 1.9 in 4 hours . ive had over 50 hypos in the past 3 months and having highs up to 20 something. the doctor and nurse dont know whats causing it and dont know what to do. the pump isnt an option for another year. im at my wits end with it and i really dont know what to do anymore, im doing everything i can and its not working. does anybody have anything they can suggest (not low carb, i just cant do it without hypoing if i eat low carb even a unit of insulin will send me hypo) or any reasons for this?
 
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..
 
first to answer the thing about the metformin last year i was severely insulin resistant (was on up to 70 u total of levemir and using 50 u of rapid a day) if i come off the metformin this starts again hence why i have to stay on it.

my basal dose was actually 18 u and 20 u at the beginning of december nad that has gone down massively clearly. the nurse seems to think it is the basal and just to keep reducing it but i cant understand why pretty much overnight id go from needing 40 u daily to needing 20 u (anyone got any ideas). im overweight so hence why 21 might seem high for a teenager.

in all honesty no i've not tested my basal because i have really bad dawn phenomena (can be up to 20 in the morning from 7 at 3 am) nad i feel rubbish with that so i have to do rapid to bring it down. and the DP messes up my night basal test -_- i think thats part of the problem is im chasing the DP until 2 pm. if i have time in the weekend ill do 2 u in the night to stop the dawn phenomena and then test my basal :) but will that mess it up?

theyve tested my thyroid again so waiting for the results to come back. seeing the gp so i assume he'll check it all i imagine

on the pump thing, my paediatric department have literally only just recieved the training for it and theres this big debate over who should fund the pumps nobodys been put on it yet but theyve put me in transition so i get on the adult waiting list for it to so whoever can get me one first will get me one but even though everyone agrees i desperately need one its not likely to be for a while yet

what is addisons? ive heard of it briefly but not really

no ive not tried non analogue, which insulins are they?

sorry for all questions.
 
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..
 
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?
 
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.
 
the only thing i can think that might be a problem is that i have lows around 4/5 pm so the morning insultard may peak at that time but i'll definitely suggest it to my doctor, thank you so muchfor all your help :)
 
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.
 
hey, yes my weight loss was pretty recent lost 2 stone since april. emotions yes im aware of how that affect me :L they think that might be one of the reasons is i went through an exam period and hence was stressed.

did look up at the nice guidelines and used it to persuade my doctor :) but the problem is in paediatrics is literally just got the traning but the adults, who i meet in april, are already trained and very pro pump so im getting put on both lists for it but im hoping they can give me an emergencey referral for it.

i tested my morning basal and realised i needed to up it a lot :) upped it and been a lot better :D but knowing it ill get it in control then the month after it'll go
 
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?
 
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