confused

[juleslittlegems]

Hello
I am new to this forum and have been advised to repost this in here to see if anybody can shine any light or give me any advice. I was diagnosed with diabetes (professionals still not sure which type) in November 2011. I already suffer with Complex Regional Pain Syndrome (CRPS) and Fibromyalgia. My current medication is Novomix 30 8 units in the morning and 14 units at dinner time and 2 Metformin daily. We managed to get me settled when i came out of hospital but after a couple of months i started to have hypos before lunch time so we stopped the insulin in the morning. Gradually my blood sugars crept up again so i started on insulin in the morning again as well as all my other medications!! Happily sailed along on this until a couple of months ago i started to have hupos again - i have contacted my specialist diabetes nurse but she never gets back to me - if i go to the doctors they refer me to the nurse and i am going round in circles!! So i stopped insulin in the morning again and lo and behold up they have crept although they are sort of ok before a meal is due, wheni test my blood 2 hours after a meal they can be as high as 18!
CRPS is a nervous system problem which tells my brain i am in trauma all of the time so my pupils are constantly dilated, blood vessels constricted and in constant pain - i suppose maybe this could have an effect on my sugars?? There i am at a loss too because nobody knows very much about CRPS either which doesnt help. My vision is becoming blurry just like it was before dagnosis - i am constantly thirsty and weeing, nauseaous but nobody seems to listen and i mean really listen to me. Can anybody help even if it is just to let me know if blood sugars of 18 between meals is ok?? Many Thanks Julie

 

[jopar]

If you are novmix30, this combines a background and a quick acting insulin together, which means that you need to balance out your carbohydrate intake against insulin intake... So you need to eat your meals and/or snack with a set amount of carbs, i,e. 30g of carbs for breakfast, mid morning snack of 20g's, lunch 30g, mid afternoon snack 20g's tea 40g, supper 20g (this is just an off the head example) and every day, you eat that amount of carbs per meal/snack at roughly the same time! Get the balance wrong, miss-timed or miss a meal you end up either high or hypo!

It seems that you do need some form of insulin support, I would ask to go an a multi-daily injections (MDI) also know as a basal/bolus regime... This you inject background separately either once or twice a day, then you use a quick acting insulin to counter react the carbohydrates you eat... This gives you the flexibility to eat what you want (within normal limitations) and you adjust your insulin accordantly... As your other medical conditions seem to lead to pain etc, pain can increase the blood glucose levels, as pain stresses the body.. This method allows you to either use a correction dose either on it's own, or with carbs you are eating, enabling you to maintain better control.

You need to learn carb counting, and learn what foods react in what why, what exercise does and also how your pain effects you so that you can work out your dose adjustments needed and will need to do more blood tests, it does seem quite a high learning curve when you first start, but you soon get used to it and it becomes a lot easier as you go along..

So I would speak to your team, and ask them about the MDI/basa/bolus regime

 

[juleslittlegems]

Hi
Thank you so much for your advice i am still waiting for my specialist diabetes nurse to ring me back after a week so i will try her again as this is making me feel so poorly - the thought of all the counting and different insulins scares the life out of me as my memory is impaired through CRPS and meds i already take - learning is very difficult for me now but i wont know if i dont try - thank you so much
Julie

 

[smidge]

Hi Julie and welcome to the forum!

I have read your post and agree with Jopar on the issue of which type of insulin regime would be best. In my opinion, bolus/basal is a much more flexible system.

Let me tell you a little about myself and then I'll make a few suggestions for you. I have a condition called LADA (Latent Autoimmune Deficiency in Adulthood). This is often referred to as Type 1.5 diabetes. It is an autoimmune form of the condition like Type 1, but comes on more slowly like Type 2. It is often misdiagnosed as Type 2 and then treated completely inappropriately. I was (mis)diagnosed with type 2 about 3 years ago and had a terrible struggle getting the medical world to see that I was not Type 2 and that I really needed to go on insulin. It took me a year to make them listen and I was very ill by then. So I know how frustrating it is when no-one listens to you!

OK, so firstly, 18 is absolutely NOT OK between meals. 18 is never OK. If you are Type 2, levels that high will be doing long-term damage. If you are type 1/1.5, it can be very dangerous as you can get a condition called ketoacidosis which needs urgent medical attention. So, my first suggestion is to make an appointment with your GP (not the nurse) and ask to be referred to a specialist diabetes clinic for tests to establish what type of diabetes you have. There are two main tests: GAD antibody test looks for a range of antibodies and if they are present that is usually indicative of an autoimmune type of diabetes (1 or 1.5); c-peptide test shows how much insulin you are producing. If you have high levels of insulin and high levels of glucose you are probably Type 2; if you have low levels of insulin and high levels of glucose you are probably Type 1/1.5. There are many reasons why you need to know this, but basically, Type 2s are often insulin resistant (i.e. produce insulin but cannot use it) and so if they inject insulin, often need much higher doses than Type 1/1.5. Type 1/1.5 produce little or no insulin and must inject insulin to cover background (basal) and any food we eat (bolus).

As Jopar said, with the type of insulin you are on, you must inject an amount and then eat the right amount of carbohydrate at the right times to match the insulin. With the bolus/basal regime, you will need to inject 4 or 5 times a day. I inject basal in the morning and evening and bolus with every meal. This means that i can count the carbs in my meals and inject just the right amount of insulin for each meal - this helps to avoid hypos and enables me to get good control of my glucose levels. If my blood glucose does go too high occasionally, I can take a correction injection of bolus and bring them back under control. I would suggest this might be a more suitable insulin regime for you. Counting carbs seems daunting, but it isn't as bad as you might think - it takes a while to get used to, but it becomes secoond nature - there are books you can buy that give you the carb value of almost all the foods you eat.

Make sure you test your blood glucose (BG) at waking, before and 2 hours after each meal. Keep a diary of everything you have eaten (including amounts - weigh your food). Write down all your test results. This is your evidence that your current regime is not working for you - take this diary to your GP, diabetes nurse or any specialist you might see - it will help them decide on an appropriate course of action. I am afraid you need to make a fuss - don't be fobbed off, this is your health we are talking about and your current treatment is not good enough. If your doctor will not refer you to a specalist, call your PALS (Patient Advisory and Liaison Service) and see if they can help.

Take care and ask any questions you need to - there are always some of us Type 1/1.5s around to share our experiences of controlling BG with insulin.

Smidge

 

[juleslittlegems]

Thank you all so much for your advice i have printed off a food and BG test diary to use and i will make an appointment for GP. I value all this information so much. Thanks again. Julie

 

[SophiaW]

Julie you have been give very good advice so I won't add anything else. Just wanted to say though that carb counting and all that can sound very daunting but once you get some practice it isn't really difficult, just seems difficult in the beginning because it's all new and takes a while to get used to.

 

[etmsreec]

Good advice from Smidge. You need to get your control sorted Julie as 18 is not really a good level for your glucose to be at. It will, of course, be affected by what you're eating, the insulin that you're producing, the insulin that you're injecting, what else is going into your system and lots of other things besides. As Smidge says, you need to get your GP to refer you to a diabetes specialist to get you stable.

 

[juleslittlegems]

Hi everyone thank you for all the great advice, I am eating a healthy diet and losing weight rapidly since sugars so high. I actually finally got a call back from the diabetes nurse at my doctors surgery who admitted to not knowing anything much about starting people on insulin!! So i told her that my Specialist Diabetes Nurse wasnt returning my calls and lo and behold she managed to get hold of her. (her phone playing up apparently) They have had a discussion and now feel i cd be type 1. I am now back on my morning insulin as well as evening and i have to collect a prescription of novorapid to take with me to an appointment i have with the specialist nurse on Tuesday - does it take a while to build up in your system because the morning dose didnt make alot of difference when i did a test 2 hours after breakfast it was still 14.8 but by lunchtime i was going into hypo with a reading of 2. I will be armed with my diary i have been keeping when i go on Tuesday. Thanks again - Julie

 

[iHs]

Hello Julie

Due to the way twice daily insulins affect bg levels it is important that you don't eat too much carbohydrate at breakfast as the insulin can take a while to kick in but when it does, down go your bg levels as you have found. Best thing is to test your bg levels before bkfast, mid morning, before lunch, mid afternoon, before eve meal and before going to bed. By doing that you will start to see what happens when you eat carb and by adjusting the carb, your bg levels will be better balanced out..

 

[juleslittlegems]

hello everyone
Thought i would let you know the outcome of my visit to the Specialist Nurse today. I now feel like someone is listening to me and is helping me - she will be starting me on Levemir and Novo Rapid. She still doesnt want to say whether i am Type 1 or 2 but she did say my GP practice had me down as type 2 which they shouldnt have done as this has never been decided for definite. She has also queried whether some of my Complex Regional Pain Syndrome could be down to Neuropathy which she is going to investigate further. Although the medication is the same for both. I feel so much better for seeing her and - i would like to thank you all again for your advice
Julie

 

[Isobel94]

Blood sugar at 18 between meals is not okay, I'm afraid to say. Did you not try adjusting the dose unit by unit? Maybe you need to pull back to around 4 units in the morning if you're having hypos? It's clear you need the insulin but maybe you only need a bit of it. Maybe keep a diary as well to keep a record of your insulin dosages, if you're not already doing so?

 

[juleslittlegems]

Hi Isobel - since i last posted this originally i have been changed to Apidra solostar and Levemir. I have 6 units Apidra in the morning before breakfst, 4 Units before lunch 5 units before dinner and then 9 units of levemir before i go to bed. The consultant advised i do this - was supposed to have an appointment 3 months later to check progress. They cancelled it and still waiting for another. I have had very few hypos since using this but my blood sugars after eating are still 18ish and if taken an hour after food they are sometimes higher. I am reall fed up with being pushed from pillar to post with this and i also have crps and fibromyalgia which has deteriorated so fighting the battle for help with help for that too again! I always kept a diary religiously and tested blood regularly too but to be honest i hardly take bloods at all nw as i know what it is going to say and i also no longer keep the diary. Fed up with it all really. Thank you for replying to my post

 

[donnellysdogs]

Can you give just one days blood readings and insuiin details? Then we may be able to help liwer those 18 levels downward?? Just one days worth would be something to go on.

Know how you feel with fibro pain, mine inlast few weeks has started to hit me bad again, and it is impacting horribly on my mood and happiness level. , and I too feel less than bothered about my bloods at moment. The words fed up with it all are ringing loud in my ears too..

Don't want to be pushy as totally know the angst you are feeling.. But, 18 is a tad too high after meals, but without seeing 24hrs of detail it is hard to help because we dont know if you then drop to normal levels..

The scales of balance are within grasp though. If like me though, the pain experienced can impact so much that to be honest, I get to point when I cant think about anything else but the pain. So, I'm not going to push.

 

[juleslittlegems]

Hi I will take them all today for you thank you for advice and understanding
Julie

 

[donnellysdogs]

Great to hear Julie. Lets see what we can do to help. If your levels are more balanced, thats one less thing to worry about.

 

[juleslittlegems]

ok so here is my diary for today:
Last night before bed 9 units Levemir

Today:
Before breakfast BG: 7.3 6 units Apidra
Oatibix & skimmed milk for breakfast (have changed breakfast cseveral times doesnt make a difference to BG
1 Hour After breakfast BG 19.1
2 Hours after BG 15.8

Before lunch BG 5.8 4 units Apidra
Salad sandwich yoghurt and apple
1 hour after BG 7.7
2 hour after BG 7.5

Before dinner 4.0 5 unitss Apidra
Filled fresh pasta and salad
1 hour after ??
2 hour after ??

Before bed 5.4

As well as the insulin i take metformin 1000mg 2 rwice a day
Did you need anything else?
I have tried taking insulin earlier on but we cannot get them down particularly that morning one although we have managed to stp the lunch time hypos
Thank you
Julie

 

[weeezer]

Hi

Got any readings from today to compare with? Spot trends etc? Looks like you've got a higher insulin:carb ratio in the morning, like a lot of us. Which just means you need more insulin with breakfast.

for example, if you usually use 1u of insulin for every 10g of carbohydrate, your need is more in the morning, you may need 1.5u per 10g or even 2u. So if those were my readings, I'd try an extra unit before breakfast and record numbers for a few days to see if bg was reducing. If they were still too high I'd add another...

The rest of your numbers look great! Good luck and report back!


Sent from the Diabetes Forum App

 

[juleslittlegems]

thats my problem when i increase the morning insulin to lower the high i have a hypo at lunch time - this pattern is pretty much what they are every day now - it really is just that morning one - consultant wanted to concentrate more on the hypos as i had a bout 3 - 4 a week!! I do have Fibromyalgia and Complex Regional pain syndrome so i suppose this could have some effect on my bloods?? - Thank you for your help

 

[weeezer]

Ahh I see. How annoying! Coz all your other numbers are enviable! What about adding a unit to counter the post meal high, then an hour before lunch a little carby snack to prevent the hypo? I appreciate that it's easy to advise...the theory is one thing and the reality another with this condition eh??!


Sent from the Diabetes Forum App

 

[juleslittlegems]

This has been going on now for about 16 months now - i will give what you suggest a try though. They have said i seem o be a type 1.5 they dont like to say whether im type 1 or 2 - Thank you