I constantly feel terrible

[Solarismach5]

Hi, I don't usually write about my diabetes because I don't know medical terms, conversion rates and types of medication so i just come on here and read others posts but I'm really struggling with my diabetes and I need some advice or just to know some opinions.

I passed my driving test 2 days ago and I'm not willing to drive because I feel really terrible and I don't want to endanger myself and others.

I'm on 40 units of lantus in the morning (7am) and generally 6 novorapid for breakfast (7am), 5 novorapid for lunch (1pm), 16 novorapid for tea (6pm)

I moved onto 4 injections about 1 1/2 years ago, for about 6 months it didn't work well but I thought it was teething problems, then 6 months - 1 year I started finding my bloodsugar hard to control and going really high and low, I managed to sort that out by adjusting my insulin and eating almost the same amount of food daily while making slight alterations to my insulin.

The past 6 months my bloodsugar has been slightly on the high side at around 216 (i'm not sure if this is right, I used this converter and did whole blood to whole blood Insulin Pumpers UK: Blood glucose converter (http://www.insulin-pumpers.org.uk/bgconverter/)) its 12 in UK units.

Recently i've started not being able to tell if i'm high or low without my bloodtest. I have headaches or feel weak most of the day, I zone out a lot and feel light-headed. Every time I do a bloodtest it tells me i'm around 8 mmol/L (161mg/dL) and I feel like i'm having an out of body experience.

I'm trying to write down everything I eat and how much insulin i'm taking for it but I just feel terrible most of the time, I generally feel okish if im a bit high, around 12 (216).

I'm not sure what to do really, I was on 2 injections a day for 14 1/2 years and everything was fine but i've heard control is worse and 4 injections islike what the body should act like. A pump would make me more stable but i'm 23 and don't really want one until i'm a bit older, at the moment I wouldn't be comfortable with something in me all the time.

Does anyone else randomly feel light-headed and unable to concentrate even when their bloodsugar is good? Any ideas what could be causing this? I think maybe its because my "normal" sugar is 12mmol/L (216mg/dL)

Thanks

John

[Solarismach5]

Just in case you wonder why i'm now worried about driving and not in my lessons :P

When I went on the lessons I had my bloodsugar a bit higher, I had the instructor with me with dual controls and I did bloodtests every 30 mins and she'd take over if I started feeling bad, its only quite recently that i've been feeling really really bad and zoned out, its worrying me that I'd have to go out alone feeling like this or i'd have to pull over and wait 3 hours until I feel well enough to carry on

[Jan B]

John,

I'm understanding most of what you are going through by how well you explained some things. I also don't know all the right terms to sound intelligent again (I used to know them all, ha - 28 yrs of Type 1 and serious lows have killed a lot of my brain cells).

The way my system works for example:
- When used to 200, even 90 can feel low but 300 doesn't feel that awful.
- When used to 90, 200 feels high, and 60 feels low.
- When used to 60, I don't feel really bad until maybe under 40 (or whatever that number is), then I'm starting to kill brain cells -- but at least 300 feels really awful.

I can function from about 35 to over 600. I've done it; faked my way through wanting to collapse, etc. It sounds odd to me that in such a short about of time going high (right), you have to have someone else take the wheel. You don't sound well I agree!

Get your Lantus right (amount and time of day). Are you confident the morning shot is working? I changed mine to before bedtime and it made a huge difference. Before that, I took it at the evening meal around 6pm.

Are you Carb Counting? It's very important to figure how many carbs you eat for each unit of fast-acting insulin you take. It's a pain, but after you learn how to count carbs in what you are about to eat, and take the appropriate amount of fast acting insulin to cover it, you have a new portion of FREEDOM!

My opinion is that getting used to a reading of anything below 60 or so is very dangerous. But it feels naturally fabulous to get used to what you feel like at 80 -- (hugely energetic and more well than normal for me). It also means I'll be going low before long!

It's possible (WOW) that some of your extreme tiredness could be due to something other than diabetes. More likely it's related somehow. It could be a problem like low thyroid function (more endocrine system issues), or something like extra stress that is wacking out your control!

If I don't get out of this office and pay some attention to my husband, he's going to shoot me. I hope I helped somewhat; I tried!

[Gary_W]

Hello John.

Your problems sound very similar to mine at the start of the year (high or low, rarely in the middle, feeling dreadful, severe headaches, concentration problems and no idea how to sort it out). Good news is I now feel terrific and chances are it's possible for you. The things I'm going to tell you about / suggest are what worked for me, obviously I can't claim they'll work for you. Having said that, many are pretty basic principals that I just didn't know about.

Some definitions for you first; you said you're not familiar with some of the terms so sorry if you know these already.

Rapid insulin. This is your Novorapid and its job is to take care of the glucose in your food.

Basal insulin is your Lantus. Its job is to keep your BG stable in the absence of food, rapid insulin or excessive activity. Its job is NOT to take up excess food.

Basal Rate: your basal insulin needs to match the glucose that your liver puts out into your blood glucose. If you have too little basal insulin, your blood sugar will rise even if you don't eat. If you have too much basal insulin, your blood sugar will constantly be falling and you will have to 'feed' the basal insulin to keep hypos at bay.

HBA1c - this is a kind of 3 month average of your blood glucose. It's the blood test you have at the yearly clinic appointment. UK recomendations are to keep this below 7 to reduce your complication risks. Many folks on here prefer to keep it closer to a 6, though this isn't easy to achieve.

Now the suggestions.

1. Total daily dose (TDD) of Insulin: There are several schools of thought on how much you need, and it is tough as everyone is different. IMO, a good starting guess for an adult without insulin resistance problems is around 0.5 units per kilo of body weight. Your total dose at the moment is 67u of insulin per day, which would suggest a body weight of 134Kg or 294lb. Or 21 stone in weight. If you are significantly lighter than this then I'd suggest you are having too much insulin. If you only weighed 8 stone and 67 units of insulin was working for you then no problem; we're all different. But as you are not well on your current system I'd keep this in mind.

2. Ratio of basal insulin to bolus. A lot of people start on roughly 50:50 split between their basal and bolus (again everyone is different). I used to suffer from lots of your problems. My total daily dose was about right, but 65% of it was coming from Lantus. If you do the maths on yours, 65% or so of yours is coming from the Lantus. Again, this will suit some people but you are ill.

3. Do a basal rate test. Basically, you fast. If your basal rate is correct then your blood glucose will neither rise nor fall by a significant amount. If it is too high then you will get inexplicable hypos at odd times. For saftey, a lunchtime one is a good start. You can have your normal breakfast and inject for it. Start your fasting test 5 hours later. Test your blood glucose and note it down. DO NOT EAT LUNCH, DO NOT INJECT RAPID. Now test your blood every 1/2 hour through until your evening meal. If your blood glucose drops during this period, you have too much basal insulin. If it rises, you have too little though looking at your symptoms and ratios I'm betting on the too much. Once you get good at these, you can do a fasting test for any meal of the day. As you are so unstable, I'd be careful about the night one as I'll bet you're having to snack before bed to feed the Lantus.

Personally, I used to inject 35u of Lantus and small amounts of Novorapid. My Lantus dose is now 18u as proven by fasting tests and the fact that I feel good.

4. Learn to count carbs. There is a ratio between grams of carbs you eat and units of insulin you inject. Most folks start at a 1:10 ratio and find their actual with lots of testing. Mine is 1:10, and if I eat 100 grams of carbohydrate I need 10 units of rapid insulin to cover it. Carb counting will make no sense at all if your basal is off, so do number 3 first. Books are available with the carb count of food, and food packets are helpful. Weigh out breakfast cereals and do the sums.

5. Treat hypos with glucose tablets. I know they stink flavour wise, but 15g of carbs should be all you need to treat most hypos. Eat 15g of glucose tabs, blood test again in 15 mins. Emptying the fridge will only cause you to have a rebound hypo and bounce off the end stops for the rest of the day. Don't treat with chocolate, biscuits etc.

6. Learn how much you BG drops from 1 unit of insulin. Again makes no sense if your basal is off. In this way, you can safely do a correction shot if you need it and get it right.

Doing the above has cured my headaches, caused me to lose over 2.5 stone and given me a new lease of life. My HBA1c has come down from 8.1 to 5.5. I never thought this possible but it is. If the things I've said here don't work for you / you're not willing to try them, keep asking on here as loads of folks have their methods and it's finding one that works for you.

Hope these help, and good luck :)

Gary

[BlueSky]

.... I have headaches or feel weak most of the day, I zone out a lot and feel light-headed. Every time I do a bloodtest it tells me i'm around 8 mmol/L (161mg/dL) and I feel like i'm having an out of body experience.....
To me, it sounds like there could be more to the problem than just blood glucose levels. You shouldn't be feeling like that, even if your blood glucose levels are high. So I would suggest being checked out by an endocrinologist.

As far as the insulin regimen goes, tweaking the amount and timing of both your basal and bolus shots may help. 40 units of Lantus is a lot in relation to your total daily dose of 67 units. Have you tested this dose by skipping meals to see if it is right for you? 40 units is also a lot to be injecting in one shot. Variability in absorption causes unpredictable swings in blood sugar levels, which could be part of your problem.

I would suggest that, before doing anything else, you split the Lantus dose evenly between evening and morning shots. That should level the playing field and make tesing your basal dose more meaningful. When you have got the Lantus sorted, you can focus on using carb counting to get your pre-meal boluses in line. Your control will improve, BG levels will become more predictable, and you should feel a lot better.

[JediSurfer]

If you are constantly running at 12 you will feel ill when hitting lower numbers. You will also feel unwell if the numbers are bouncing up and down all the time. This causes the endocine( which is basically the digestive sytem in the body) to bounce around also causing inbalance of hormones which affect how we feel.

Personally in your situation I would reduce the amount of Lantus by at least half and see if you can get an insuloin called Apidra(glulisine, is the generic name incase your doc has trouble finding it).

One of the most important blood glucose or sugar levels is the one first thing in the morning. If you can get this under control it gives you a good starting block for the rest of the day. You would want to aim for a number of 6 or 7.

I also beleive testing every hour to get a full definition of what your blood glucose levels thru the day are. gives a better indication of where the problems are.

The basal dose of insulin which is the Lantus is very important to finding a balance. I found a split dose of 12 units at six am and six pm works best for me 24 units in total. Took me along time to get a good dose amount for the Lantus and lots of trial and error.

Good to hear you are not driving when feeling so unwell. good on you not putting yourself or anyone else in any uneeded danger.

We have all been in the same situation as yourself and some of us still are. Hopefully we can all help you and attain a better quality of life.

Peace n love
Rich

[REDLAN]

with a basal-bolus regime (or MDI), which is what it sounds like you are on, the MOST important thing to get right is the basal dose. Ironically high basal doses can cause your blood sugars to run high....

...you end up a) feeding the insulin by eating more, and b) your body responds to the extra insulin by dumping more glucose into your blood stream.

with 40 units per day, I would definitely split it. half in the morning when you get up and half in the evening. Most people use a 12 hour split.

then I would try decreasing my basal (lantus), and get my basal down to the lowest dose, that still gave me good fasting blood sugar control - for me the best fasting BG's are the one first thing in the morning, and the fasting just before the evening meal (these are periods when I tend not to eat - ie. For the morning I'm asleep, and for the evening meal my last lot of food tends to be lunch).

once my basal is working (basal dose should be around the same as your bolus dose - so I would expect your basal should be around 25-30 units) everything else slots into place.

people have mentioned carb counting- from personal experience this is the way to go - It works!

The light headed experiences you are feeling is very likely down to the fact that your blood sugars have been running high. The body adapts to the higher BG's and so you experience hypos sensations at higher blood sugars (people who run very tight blood sugars can lose hypo sensations altogether)

can't stress enough, that the key to good control, and feeling well is getting your basal right. This is where you need to start.

GOOD LUCK

[Olidus]

Is it just me or is 40 Units of Lantus high?

Carb counting is the way to go - unless you are eating the exact same thing for all 3 of your meals each day.

[Solarismach5]

I'd just like to thank everyone for their help, theres some really good suggestions here so i've bookmarked the post :)

I'm trying carb counting now, i've made an excel spreadsheet with time, bloodsugars, amount of food, units of insulin and documenting how I feel all the time, It might be a bit laborious to do but i'm going to try and carry a notepad around and type it up at night and it'll be worth it

I'll try splitting my lantus and doing the fasting test, my weight is 12 stone (168lbs), so i'll see if i can tweak the amount and get it right

Thanks again and if I have any questions i'll be sure to ask :T

[ngueld]

Hello John.

Your problems sound very similar to mine at the start of the year (high or low, rarely in the middle, feeling dreadful, severe headaches, concentration problems and no idea how to sort it out). Good news is I now feel terrific and chances are it's possible for you. The things I'm going to tell you about / suggest are what worked for me, obviously I can't claim they'll work for you. Having said that, many are pretty basic principals that I just didn't know about.

Some definitions for you first; you said you're not familiar with some of the terms so sorry if you know these already.

Rapid insulin. This is your Novorapid and its job is to take care of the glucose in your food.

Basal insulin is your Lantus. Its job is to keep your BG stable in the absence of food, rapid insulin or excessive activity. Its job is NOT to take up excess food.

Basal Rate: your basal insulin needs to match the glucose that your liver puts out into your blood glucose. If you have too little basal insulin, your blood sugar will rise even if you don't eat. If you have too much basal insulin, your blood sugar will constantly be falling and you will have to 'feed' the basal insulin to keep hypos at bay.

HBA1c - this is a kind of 3 month average of your blood glucose. It's the blood test you have at the yearly clinic appointment. UK recomendations are to keep this below 7 to reduce your complication risks. Many folks on here prefer to keep it closer to a 6, though this isn't easy to achieve.

Now the suggestions.

1. Total daily dose (TDD) of Insulin: There are several schools of thought on how much you need, and it is tough as everyone is different. IMO, a good starting guess for an adult without insulin resistance problems is around 0.5 units per kilo of body weight. Your total dose at the moment is 67u of insulin per day, which would suggest a body weight of 134Kg or 294lb. Or 21 stone in weight. If you are significantly lighter than this then I'd suggest you are having too much insulin. If you only weighed 8 stone and 67 units of insulin was working for you then no problem; we're all different. But as you are not well on your current system I'd keep this in mind.

2. Ratio of basal insulin to bolus. A lot of people start on roughly 50:50 split between their basal and bolus (again everyone is different). I used to suffer from lots of your problems. My total daily dose was about right, but 65% of it was coming from Lantus. If you do the maths on yours, 65% or so of yours is coming from the Lantus. Again, this will suit some people but you are ill.

3. Do a basal rate test. Basically, you fast. If your basal rate is correct then your blood glucose will neither rise nor fall by a significant amount. If it is too high then you will get inexplicable hypos at odd times. For saftey, a lunchtime one is a good start. You can have your normal breakfast and inject for it. Start your fasting test 5 hours later. Test your blood glucose and note it down. DO NOT EAT LUNCH, DO NOT INJECT RAPID. Now test your blood every 1/2 hour through until your evening meal. If your blood glucose drops during this period, you have too much basal insulin. If it rises, you have too little though looking at your symptoms and ratios I'm betting on the too much. Once you get good at these, you can do a fasting test for any meal of the day. As you are so unstable, I'd be careful about the night one as I'll bet you're having to snack before bed to feed the Lantus.

Personally, I used to inject 35u of Lantus and small amounts of Novorapid. My Lantus dose is now 18u as proven by fasting tests and the fact that I feel good.

4. Learn to count carbs. There is a ratio between grams of carbs you eat and units of insulin you inject. Most folks start at a 1:10 ratio and find their actual with lots of testing. Mine is 1:10, and if I eat 100 grams of carbohydrate I need 10 units of rapid insulin to cover it. Carb counting will make no sense at all if your basal is off, so do number 3 first. Books are available with the carb count of food, and food packets are helpful. Weigh out breakfast cereals and do the sums.

5. Treat hypos with glucose tablets. I know they stink flavour wise, but 15g of carbs should be all you need to treat most hypos. Eat 15g of glucose tabs, blood test again in 15 mins. Emptying the fridge will only cause you to have a rebound hypo and bounce off the end stops for the rest of the day. Don't treat with chocolate, biscuits etc.

6. Learn how much you BG drops from 1 unit of insulin. Again makes no sense if your basal is off. In this way, you can safely do a correction shot if you need it and get it right.

Doing the above has cured my headaches, caused me to lose over 2.5 stone and given me a new lease of life. My HBA1c has come down from 8.1 to 5.5. I never thought this possible but it is. If the things I've said here don't work for you / you're not willing to try them, keep asking on here as loads of folks have their methods and it's finding one that works for you.

Hope these help, and good luck :)

Gary

That was possibly the greatest post I have ever read. I think I learned more about diabetes reading that than what I learned at diagnosis. Nice one!

[daryop]

great info...thanx

[Gary_W]

That was possibly the greatest post I have ever read. I think I learned more about diabetes reading that than what I learned at diagnosis. Nice one!

Very kind of you to say so :)

All of it was stolen from other good people here; I really didn't get any of this stuff until earlier this year. Using it has made my life a lot more pleasant and if I can return the favour to someone else then I feel I'm paying back a bit of what this place has done for me.

If you want another source of good advice with all the details, the book 'Using Insulin' by John Walsh is great. Again, this was recommended by another forum member and has proved invaluable. About £12UK on Amazon.

Gary