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totally baffled and uninformed

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luisa

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Hi everyone, Im Luisa, english, living in Portugal but currently in the process of moving to Africa to live in the bush. Im kinda newly diagnosed with type 1.5 but from what Ive learnt so far ( which isnt much ) I dont quite fit the bill. Allow me to explain then you can be as confused as me !!!
In October I had a few days of extreme thirst then one day of being sick and the same night I was in a pre-coma state and was rushed to ICU in hospital. I stayed in hospital for 18 days, I can speak a little Portuguese so that helped. On the day of my release, I had a hypo - didnt know what was happening as no-one told me what to expect - and one male nurse who spoke english said `get used to it ` An hour later, I was given a diet sheet in Portuguese and a pen to inject with along with a piece of paper to tell me how much to inject at each meal. I am injecting 30 u of lantus in the morning and 4 times with lispro at varying amounts between 2 and 8 according to my levels. Now, since translating my diet sheet, I find that I am on 230g of carbs a day, which I know is too much but my doc wont let me experiment with food or insulin levels. I have put on a stone in weight and Im really miserable about that. I do the exercise that Ive been told to, and although my levels have gone down on average from 200 + to 90 -150 I am still having up to 5 hypos a day, some as low as 20 ish. My docs answer ? eat more carbs, take more insulin and come and stay in hospital for a few days so we can study you. I did that - BIG mistake- I was left without food for 14 hours every night and when they were feeding me, it was totally the wrong stuff and at the wrong times too. I walked out in the end and drove home thoroughly upset with the whole episode. Other people I talk to all give me their test results to compare, but I have nothing to compare with. I know I have had analysis tests done ( the 1st time I wasnt told not to eat anything so that was a total waste of time ) but never been given results. Can anyone help ? :(
 
You are not a prisoner, You can work things out for yourself and it looks like you will have to. Trink has pointed you to some good websites. In addition, I would get a copy of Dr. Bernstein's diabetes Solution. I expect Amazon can get it to you.
the objective is to follow the correct eating plan for YOU and take the appropriate amount of medication.
Since you are unhappy with the weight gain, loads of insulin and loads of carbs isn't it.
You have been left in the lurch by the medical profession. Why ever did that take 18 days in hospital?
Lots of hypos are dangerous and may have long term harmful effects too. A blood glucose meter is essential and an adequate supply of test strips to be able to test every few hours to see what's happening.
Are you certain of the T1.5 diagnosis?
I'm not an insulin user, so I don't have the experience to help you solve this, but I hope I've given you confidence to take command. someone else might pop up to help with details.
What diabetes charities are theree in Portugal. could they be helpful?
 
Thanks for your reply. I was in hospital for so long because a: they couldnt stabilise me b: I had a raging fever and c: because the acid had stripped the lining from my throat, I couldnt swallow anything so for the first week I was living on a glucose drip.
I have a glucose machine, but my doc will only issue 1 box of strips a month and over here in Portugal, you can only make an appt. to see a doc on the 1st or last Fri of any month so basically the whole thing is a waste of time. Now you can see why we are moving ! :roll:
 
I can't think you will be worse off in Africa. where are you going? I recently met someone who had wonderful diabetes care in Zimbabwe, before the current political situation.
I suspect you'd be better off with a witch doctor.
 
We are going to Botswana and we have done quite a bit of research on this. Its very stable, english speaking, has state of the art hospitals and a very good internal medicine system. We will be looking for a private hospital as well, but I cant be worse off than I am now ! Witch doctors, now theres a thought..................... hmmm, may as well check them out too :lol:
 
I did work with a young woman from Botsana a few years ago and she told me that the number1 ladies detective agency stories by Alexander McCall Smith are very truthful to the country. Have you read them.? I hope you get good care there
 
Hi,
From your description you sound as if you were in ketosis and that normally indicates type 1. If you are slightly (or even much) older than a child or adolescent it may have taken longer to develop, hence type 1.5. or LADA (latent autoimmune diabetes in adults)

What you now need to to is to work out how best to use insulin to control it. I was diagnosed in very similar circumstances. I left hospital with a similar regime, including the fixed number of carbs per day and a sliding scale of rapid insulin. The number of carbs a day was also similar. Unlike you I was given advice on adjusting my insulin.
Your basal (lantus) isthe insulin that covers the glucose released by your body, its purpose is to keep your blood glucose levels in between meals. If you didn't eat, in an ideal situation you blood glucose level would remain stable.
Your rapid (lispro) covers the meals, it starts its action fairly soon after eating, peaks at about 2 hours and then has a tail where it continues to 'work' for another couple of hours.
If your hypos occur more than 2 hours after eating, they are likely to be because of too much lantus or exercise. What you can do to test this is to divide your day into segments and test each segment at a time. Miss a meal and test your levels. They should not change by more than about 18mg/dl(1mmol). If Bg is going down more than this then you need to lower you basal. Do this by no more than 2 units at a time and leave it 3 days to see if things have improved. Overnight is probably the best time to get right first . Seehttp://www.diabetesdaily.com/forum/articles/16675-basal-testing-multiple-daily-injections This explains it far better than I can.
If your hypos are within 2 hours of eating, then the culprit is more likely to be the rapid insulin. I have to say this is where a fixed carb regime came in useful. If you eat the same amount of carbs at the same time of day then it is relatively easy to adjust the insulin to achieve a reasonable result. Test at 2 hours postprandialy and then adjust the following day by a unit up or down depending on readings. The targets I was given initially was to ideally have a rise of no more than 50mg/dl (2.7mmol/l) and not to go above 150mg/dl (8.3mmol). When you have sorted out how much insulin you need for your normal amount of carbs you will find it easier to be more flexible on the number of carbs you eat. There is far more about carb counting/dose adjustment on the Bournemouth (BDEC) link given by Trinkwasser.

It is important that you test regularly to understand your bodies response to food, insulin and exercise.If you can't get suffcient strips prescribed (probably an average of 6 per day to begin with) I would buy them myself if at all possible.

You won't get it right all the time. Things may( and will) change. As you've just been diagnosed it may very well happen that you have a period when your insulin requirements get lower. With classic type 1 this is often called a honeymoon, with the slower onset (LADA) there may several cycles of needing less insulin, followed by needing more (this is still happening to me 4 years after diagnosis and can be very frustrating)

Finally if you are having frequent hypos it points to too much insulin. This will make you eat to feed the insulin, you'll put on weight. However it is not unusual for people to put on weight after diagnosis since they have often lost a lot when they had undiagnosed high blood glucose levels before diagnosis.
Thats enough for now (hope its not overload!)
 
wow, thankyou soooooo much for all your help - I feel quite stupid for not knowing anything, but I really had no idea that I was supposed to sort out my own treatment. Over here, people dont even know what type they are when you ask them - they just accept that they are diabetic and what the doc says goes and you dont ask questions so you can see what Im up against. I cant wait to go now, just need 1 buyer for the house then you wont see me for dust !
I have to see the doc on Thursday, I wonder how she ll take it when I tell her that I want to start cutting carbs and insulin - she ll probably have a dickey fit and strike me off her list ................
However, back to the gritty stuff, can anyone help with this one ? When Im due to eat and Im having a low at the same time, am I supposed to have sugar to bring my levels up to a point where I can take insulin before I eat, do I eat first then take insulin, do I take insulin and then eat and hope the food kicks in before the insulin or just eat without insulin ? I know this is probably obvious to most people, but again I havent been told anything. Take today for example, I had exactly the same food at the same time as yesterday, but 1/4 of an hour before lunch, I took my reading and it was 35. I had only just started to feel it and sometimes I cant feel it at all which can get a bit scary. Other times, I can feel a low when it is in the 60s and my tongue and mouth go numb as if Ive been to the dentist for a filling. Also my legs go numb from the knees up - is this all normal because I have no idea what is and isnt ? :?
 
hi, hanadr, no I havent read the books have you ? Is there something in them you think maybe I should know ?
Maybe I should just go ahead and get a copy anyway - you got me wondering !
 
2 answers luisa
first.- read those books they are enchanting. They tell you a lot about the people and the culture too.
second.- If you are due to eat and are a bit low ( down to about 3.5 or 65) there's no need to have sugar first.
just have your meal.
That level would be normal for a non-diabetic who hasn't eaten. the medics tend to get paranoid about levels below 4 or 72, but there's really no need. You won't come to any harm if you drop to 3 or 55. If you get there and are still dropping, take some glucose. A sports drink is as good as anything and will act fast.
Have luck with your choice of witch doctor :lol:
 
I am on Levimer and Novorapid both of which have an expiration date of 2012 if kept refrigerated? Is it worth getting a batch of this stuff either to use or just encase you are unable to get your normal supplies? I have managed to achieve good control on these two drugs, i use a insulin injection pen that is small and desecrate to carry around.
 
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