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Constant Highs and Lows! Is it REALLY our fault?

brendan101

brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
In 1986 when I was diagnosed, I was told that insulin controls my blood sugar. If I get the dosing correct and I stay away from sugary foods, I will not go high. Should I go high I have done something wrong with my dosing or I have eaten something 'naughty'. Well after over 28 years with diabetes I refute this. Regardless of how hard I try to keep my BGs in the correct range, I fail. I get post prandial (after meals) highs and if I try to really tighten things up, I can go hypo 2-3 hours after eating. Insulin is only part of the problem. I cannot exercise like the rest of the world. I sweat way too easily and I live in fear of hypos. This I have been told is as a result of hypoglycemia but also excessive sweating is a side effect of having diabetes when low and also when NOT low. The explanation of this is the detrimental affect the loss of insulin has on other hormones.

Because the body's beta cells have been destroyed, anhormone called Amylin cannot be produced by a diabetic. Never has an endocrinologist spoken about this to me until I have asked. This hormone was discovered in 1997 (and this is not spoken about in polite circles!!) and is responsible for slowing down stomach emptying. It also inhibits glucagon production when eating which is the hormone that creates artificial high BGs in diabetics either through the dawn phenomenon or as a result of the body's reaction to a low BG and hence the yo-yo effect an insulin dependant diabetic is powerless to affect. It also suppresses appetite. Does anyone else feel like they could eat a horse approaching mealtimes on occasion? It has also been shown to reduce the amount of short acting insulin needed as we take more to keep levels down asfter eating but are then hit by the hypos! On the longer term basis it reduces HbA1(c) levels. It has not been approved in the UK. The reason they say this is because it can cause hypos but this only happens initially in much the same way as changing insulins, we need a settling in phase. It can also help with weight management as the blood sugar swings and hunger are less pronounced. The body maintains homeostasis (balance) and we feel better.

Can anyone shed any light on this Amylin (I think it's tradename is Symlin) and explain why diabetics in the USA have access to it and we don't?
 
Hi Brendan - I can't shed any light on Amylin, however just wanted to find out why your readings after meals is what your gauging your results on ? I was educated on DAFNE to not test until before my next meal or before driving, otherwise you can over correct and end up hypo-ing. If you're taking the right quick acting dose before your meal you shouldn't be hypo-ing 2-3 hours later. Testing within 3 hours is a false economy as you've still got insulin on board and for a more accurate test it should be done around 4 hour later when completely depleted from your system. I had a really bad problem with over-correcting before doing DAFNE and became quite anxious about hypos, testing was ruling my life, after going to DAFNE I chilled out more, had less hypos and feel in better control.

Sorry if this sounds like a waffle but hope it makes sense ;)
 
brendan101 said:
In 1986 when I was diagnosed, I was told that insulin controls my blood sugar. If I get the dosing correct and I stay away from sugary foods, I will not go high. Should I go high I have done something wrong with my dosing or I have eaten something 'naughty'. Well after over 28 years with diabetes I refute this. Regardless of how hard I try to keep my BGs in the correct range, I fail. I get post prandial (after meals) highs and if I try to really tighten things up, I can go hypo 2-3 hours after eating. Insulin is only part of the problem. I cannot exercise like the rest of the world. I sweat way too easily and I live in fear of hypos. This I have been told is as a result of hypoglycemia but also excessive sweating is a side effect of having diabetes when low and also when NOT low. The explanation of this is the detrimental affect the loss of insulin has on other hormones.

Because the body's beta cells have been destroyed, anhormone called Amylin cannot be produced by a diabetic. Never has an endocrinologist spoken about this to me until I have asked. This hormone was discovered in 1997 (and this is not spoken about in polite circles!!) and is responsible for slowing down stomach emptying. It also inhibits glucagon production when eating which is the hormone that creates artificial high BGs in diabetics either through the dawn phenomenon or as a result of the body's reaction to a low BG and hence the yo-yo effect an insulin dependant diabetic is powerless to affect. It also suppresses appetite. Does anyone else feel like they could eat a horse approaching mealtimes on occasion? It has also been shown to reduce the amount of short acting insulin needed as we take more to keep levels down asfter eating but are then hit by the hypos! On the longer term basis it reduces HbA1(c) levels. It has not been approved in the UK. The reason they say this is because it can cause hypos but this only happens initially in much the same way as changing insulins, we need a settling in phase. It can also help with weight management as the blood sugar swings and hunger are less pronounced. The body maintains homeostasis (balance) and we feel better.

Can anyone shed any light on this Amylin (I think it's tradename is Symlin) and explain why diabetics in the USA have access to it and we don't?
Click to expand...
As your other post here, please get yourself on a DAFNE Course ASAP. I did the course in Sept 2013 and only follow what I learnt on the course and I now only use a DAFNE nurse who ran my course if I need help....by e-mail. I've also changed insulins twice since I did the course as my novorapid stopped working. I'm now on Apidra, humulin I and metfornin SR tablets as I'm very resistant to insulin. My BSs are mostly OK and my last HBA1c was 49 (6.6%)....best I've ever been. DAFNE recommends that we test before a meal. do your carb count calculations and do any corrections if you're high, then test 4 hours after the meal. Proper carb counting is a must to achieve good BSs control by matching your qucik acting insulin to the amount of carbs being eaten for that meal.
 
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I do tests after meals to check if I've got my bolus right, especially if I eat something different. To me, it sounded like Brendan's issue is spikes after meals which he tried to correct by increasing his bolus but then went too low. I may be wrong, of course : D And your pont about over-correcting is spot on, Juicyj

Brendan, could you confirm if it is spikes after meals that's your problem? If it is, there are a number of threads about this that you could look at and a number of things you could try eg injecting your insulin earlier so it can cover the spike (that's what I do for breakfast when I'm prone to spike).

You say about exercise and hypos in general. Have you spoken to a DSN to try to sort these out? Hypos are horrible and to live in fear of them is not good. I'd hope there'd be a way of managing your diabetes to reduce these. For me, the answer was an insulin pump.

Yes, I've heard of Amylin but I don't know why it's not prescribed in the UK. Could it be a cost thing?
 
Juicyj, thanks for your comments. You make good points. You too Nigel and Azure. Yes I could take my short acting earlier. There are always ways around it when trying to titrate insulin against BGs if you consider insulin and sugar to be like an acid/base reaction in chemistry. The issue is that it is not that simple. The pancreas produces insulin, amylin, ghelin (appetite control),glucagon, somatostatin and pancreatic polypeptide. Apart from this there are the stresses and strains in life so the adrenals help with this causing BG imbalances. God forbid you'd want to drink alcohol because there's another minefield! The lack of insulin (as in type 1) and indeed too much insulin flowing in the bloodstream as is the case in all type 1 diabetics who inject into fatty tissue causes the other hormones to try to over-compensate and this affects BGs and may also tire out the part of the gland that secretes the aforementioned hormones. I heard it described as driving a car but having a 5 second delay before any driver input takes effect. This delay causes huge imbalances and attempts to over correct. I have been trained in using an insulin pump and was on one for a few months but I had site irritation and I didn't enjoy the Pod although it did help with my dawn phenomenon. My body missed the background insulin and I would develop hyperglycemia extremely quickly and needed correction doses on top of my meal boluses which didn't help the site irritation I was suffering. Overall I see value in the pump but it wasn't for me :-( I did learn that my correction dose was 1iu to reduce the BG by 2mmol which is helpful before meals when calculating dosages.

Normal non diabetics produce 20-40iu of insulin a day. I inject 72iu as the insulin I inject does not get to the target organ (liver) in a high enough concentration to allow the liver to store the insulin and control the BG level. The liver should absorb 60% of the insulin so far less should be in the blood so hypos are less likely. I have used the Freestyle Libre stsyem and you'd be amazed how quickly BGs change as a diabetic eats. You could argue how could a non-diabetic pancreas deal with this but it does. Upon carbs entering the stomach the non diabetic pancreas releases insulin so that it's immediately available to do its job. This insulin travels in the portal vein to the liver where it triggers the liver to store glucose. Incidentally the liver is the only place where glucose can be taken up and released thus preventing hypos. In type one diabetics, glucose is stored by the muscle and the fat cells. This is a one way street so hypos are a huge side effect.

They are trying to find better ways to treat diabetes. Dr Claresa Levetan at Perle Bioscience and also Dr Bob Geho at Diasome Pharmaceuticals are doing pioneering work on these 'issues'. It is an absolute disgrace that after 80 years there are no better solutions to controlling diabetes. Medtronics used to have an internal insulin pump which was very pioneering but this was dropped with no mention of a follow-up. Yet every year we are tricked into looking at the next pump which is a new gadget delivering insulin the same way it's been delivered for the last 80 years! I am tired of fighting a losing battle!
 
I would suggest that you also request a CGM for a week or two from your Diabetic Consultant/Clinic. It will open your eyes to what really happens when you eat and the patterns you are really experiencing.
 
brendan101 said:
In 1986 when I was diagnosed, I was told that insulin controls my blood sugar. If I get the dosing correct and I stay away from sugary foods, I will not go high. Should I go high I have done something wrong with my dosing or I have eaten something 'naughty'. Well after over 28 years with diabetes I refute this. Regardless of how hard I try to keep my BGs in the correct range, I fail. I get post prandial (after meals) highs and if I try to really tighten things up, I can go hypo 2-3 hours after eating. Insulin is only part of the problem. I cannot exercise like the rest of the world. I sweat way too easily and I live in fear of hypos. This I have been told is as a result of hypoglycemia but also excessive sweating is a side effect of having diabetes when low and also when NOT low. The explanation of this is the detrimental affect the loss of insulin has on other hormones.

Because the body's beta cells have been destroyed, anhormone called Amylin cannot be produced by a diabetic. Never has an endocrinologist spoken about this to me until I have asked. This hormone was discovered in 1997 (and this is not spoken about in polite circles!!) and is responsible for slowing down stomach emptying. It also inhibits glucagon production when eating which is the hormone that creates artificial high BGs in diabetics either through the dawn phenomenon or as a result of the body's reaction to a low BG and hence the yo-yo effect an insulin dependant diabetic is powerless to affect. It also suppresses appetite. Does anyone else feel like they could eat a horse approaching mealtimes on occasion? It has also been shown to reduce the amount of short acting insulin needed as we take more to keep levels down asfter eating but are then hit by the hypos! On the longer term basis it reduces HbA1(c) levels. It has not been approved in the UK. The reason they say this is because it can cause hypos but this only happens initially in much the same way as changing insulins, we need a settling in phase. It can also help with weight management as the blood sugar swings and hunger are less pronounced. The body maintains homeostasis (balance) and we feel better.

Can anyone shed any light on this Amylin (I think it's tradename is Symlin) and explain why diabetics in the USA have access to it and we don't?
Click to expand...

I completely understand your frustration, Brendan. When I was first diagnosed, I couldn't believe they still didn't know precisely what caused Type 1. I then assumed I'd be asked questions, tested, or whatever to get more information about what caused it as non-one knew. But no. It was maddening.

Insulin is considered the treatment and that's that. Before I had diabetes, I had no idea about the difficulty of controlling your blood sugar. I didn't realise what a balancing act it was.

I know you've been a bit dismissive of pumps, and I do agree that the constant 'latest pump' thing is tedious. My pump is an old style one but much better and much simpler than the all-singing, all dancing ones. It also keeps my blood sugars under control and makes my results MUCH smoother. I originally got it to deal with recurring hypos, and it reduced those enormously. It also deals with my Dawn Phenomena perfectly. In addition, I can reduce the basal rate for exercise, which makes everything easier.

I'm not trying to 'sell' the idea of a pump to you, but for me it changed my life. No long-acting insulin can do what my pump does in adjusting my basal rates as I need. I'd HATE to go back on long-acting insulin.

Diabetes is frustrating and impossible to manage perfectly, but I guess we all do the best we can until that wonderful cure comes along - hopefully sooner rather than later!
 
Hi Brendon, have you tested your basal to see how that works out for you? If you haven't start there, then once you have that sorted as best you can look at your carb ratio for each meal. Many find that they have different ratios for different times of day.
Analogue basal insulin's are fantast just as long as you have a flat basal profile. (very few have) The medical profession always blame the patient without even considering that the insulin might not actually match the patients needs.
 
brendan101 said:
In type one diabetics, glucose is stored by the muscle and the fat cells...every year we are tricked into looking at the next pump which is a new gadget delivering insulin the same way it's been delivered for the last 80 years! I am tired of fighting a losing battle!
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Brendan, I am just quoting two bits of your "prose poem" because they are the only parts I can offer anything about.

First, that stubborn inability to shift the fat out of those cells. Yes, it's true, and there is a biological basis for it, as you point out. However, a lot of people on these boards have succeeded in shifting that fat anyway. There are a lot of solutions here: Low carb is one and ketogenic another. After doing much the same reading and study as you, I found that a regular moderate carb diet supplemented with evening primrose oil and, of course, exercise, gives me a sudden drop in belly fat, generally. To be honest I have forgotten all the whys and wherefores, but it works for me.

On the technology of diabetes, I went on a rant on the same theme at home a few weeks back. I have been diabetic 47 years and frankly, yes, I am fed up with the paltry and ineffective research done into Type 1 diabetes. I think it's all about insulin delivery systems, when diabetes is an autoimmune disorder with links with other auto immune disorders so tinkering about with the islets of Langerhans has been a waste of 80 years and God knows how many dollars/pounds.

Having said that, after literally years of hesitation (frank scepticism in fact), I did get a pump. I put about five months into writing down every activity, every morsel I consumed, every...., etc. and got it down. Yes, it's only a new delivery system, but my God, so much more flexible than any other. So it's worth it. We can live longer and keep nagging them to do some real research!
 
Thanks everyone for your comments. I do believe in the pump and I know that some people do well on them but it doesn't work for me. As I exercise and have a higher muscle % than most, I get site absorption issues with the pump and also irritation. I cannot cross my fingers every time I change a Pod etc and hope that the insulin will be absorbed well enough. I have been quite unwell when the insulin is not absorbed. It's no good for me. Thanks for the article on Amylin (Symlin). It echos much of what I have previously said. The mention from Juicyj about not testing after meals I feel is also a vaid point as we can become obsessed with testing and over-testing and this can result in dialing up doses and hypos but I wouldn't test if I felt well and able to get on with my normal activities. I have also performed fasting tests on my basal rates and I am happy that I am taking the correct dose at present (34 units). I think that I have made every effort to control diabetes but I still struggle with the swings. I could possibly be burnt out from it and I am quite upset about it. If I had cancer for example there would be more understanding and support available but since my life is not at imminent risk, there seems to be nothing being done to cure diabetes. There is now a new finger prick device that works on a vacuum and is pain free apparently but is BIGGER than a finger pricker and takes 6-7 seconds to draw blood so essentially takes up to SEVEN TIMES LONGER to do the same thing and we are applauding these innovations. I guess if you are a child you may get excited by these things but it's not improving the outcomes for people living with this disease. As we grow older I think we don't mind the needles and the testing. We just want our time, effort and mental investment to result in us feeling well and able to function in much the same way as a non-diabetic who takes this all for granted. Sadly diabetes self management is presently putting a plaster on the wound and rubbing salt in it from time to time to see how much more people can take before they give up. I don't particularly want to give up but I feel deeply frustrated by it all.
 
Sorry you're still frustrated by it all, Brendan. I do understand why. All I'd say is dont completely rule out a pump in future. You mention a "Pod". Do you mean an Omnipod? Maybe a different pump with different cannulas would suit you better?

I have hardly any fat and a high muscle amount, and I know many people here have far higher than me, and we can still use pumps. Yes, occasionally I'll get poor absorption, but most of the time I'm fine. I use my bum and my thighs for pump sites and I'm very careful about what cannulas I use (different ones for each area). I don't use my tummy because it's too slim. My pump isn't perfect but it's made my life an awful lot easier and my results much smoother.

I'm not hassling you to get a pump - just saying don't rule it out and look at other models and cannulas if you want to try again at some time.

If not, try experimenting with your bolus timings and amounts, maybe even splitting them. That might help. You won't ever be perfect but it is gratifying to improve things and win any small victories you can over diabetes.

Good luck :)
 
Hi Azure, yes I was on the Omnipod and I had some Pod failures where the canula didn't insert correctly but also I had site absorption issues. I felt much more reassured with taking boluses via the Novopen and the background insulin now means that my levels don't skyrocket if for any reason my boluses don't absorb correctly. I had 2 pumps over the last 20 years and both resulted in issues the former in DKA. I am also working and travelling most days in my car and train so absorption issues are not acceptable. You make a valid point though. If I had the luxury of 2 months holidays and pump people on call then maybe I would consider it again at some point. Diabetes is a major pain.
 
Hey Brendan,

Yep, it's all a pain in the butt. Gotta deal with it however. I was diagnosed in 1988 and also have similar variations in my levels. I am considering to completely quit high carb foods to balance it all better. An interesting thing that's popped up here is how coffee stops insulin from being as strong - hence high sugar levels after breakfast. I like coffee and need to check that one out. In the meantime, with exercise, I either go mega high or end up with a lowpo. assuming that watching how the heart rate is working to keep the liver from chucking out a load of glucogon.

Hmm.... my tweaks are 1u to 3mmol (when levels are flat). Sometimes it works, other times not at all, no matter how long after I previous ate or administered a bolus. I am not on a pump and don't like the idea of being wired up and assume that I can just 'think like a pancreas', which am reading atm, by administering bits here and there to counteract the various weird carbs out there.

So... my opinion is that we cannot continue with a typical diet and must drop hi carb foods so that we don't complicate ourselves too much. If we were great mathematicians, we'd probably be able to eat those hi carb foods... I am a musician, not a mathematician... maybe I need to learn more jazz..
 
Really I love my coffee. Heres another really strange one. I have tried apple cider vinegar. It seems to help with post meal highs. I only got some 2 days ago and my levels after breakfast today have been good. Maybe its a fluke. Its supposed to stop the liver dumping sugar into blood ie dawn phenomenon! You take 2 tablespoonfulsbefore breakfast and the ssame before bed. I will keep people posted.
 
brendan101 said:
Thanks everyone for your comments. I do believe in the pump and I know that some people do well on them but it doesn't work for me. As I exercise and have a higher muscle % than most, I get site absorption issues with the pump and also irritation. I cannot cross my fingers every time I change a Pod etc and hope that the insulin will be absorbed well enough. I have been quite unwell when the insulin is not absorbed. It's no good for me. Thanks for the article on Amylin (Symlin). It echos much of what I have previously said. The mention from Juicyj about not testing after meals I feel is also a vaid point as we can become obsessed with testing and over-testing and this can result in dialing up doses and hypos but I wouldn't test if I felt well and able to get on with my normal activities. I have also performed fasting tests on my basal rates and I am happy that I am taking the correct dose at present (34 units). I think that I have made every effort to control diabetes but I still struggle with the swings. I could possibly be burnt out from it and I am quite upset about it. If I had cancer for example there would be more understanding and support available but since my life is not at imminent risk, there seems to be nothing being done to cure diabetes. There is now a new finger prick device that works on a vacuum and is pain free apparently but is BIGGER than a finger pricker and takes 6-7 seconds to draw blood so essentially takes up to SEVEN TIMES LONGER to do the same thing and we are applauding these innovations. I guess if you are a child you may get excited by these things but it's not improving the outcomes for people living with this disease. As we grow older I think we don't mind the needles and the testing. We just want our time, effort and mental investment to result in us feeling well and able to function in much the same way as a non-diabetic who takes this all for granted. Sadly diabetes self management is presently putting a plaster on the wound and rubbing salt in it from time to time to see how much more people can take before they give up. I don't particularly want to give up but I feel deeply frustrated by it all.
Click to expand...

I have no fat at all. Just muscle and skin. Very lean. My consultant yesterday says I have no fat, just a layer of skin.

So my point. Perhaps its just the pod that doesn't suit you. Flexible cannulas aren't recommended for lean, muscly people. Even 6mm steel ones for me are difficult as I can hit muscle. I am a fit active gardener and I go the gym. I have a pump. My levels are consistently (now the insight pump has the steels) between 5 and 7. However at times they do go up... I have asked Accuchek if they will consider making smaller sets as there are random patterns of highs with these sets that are occuring. It maybe thst the sets in my case aren't lasting a full 2 days or that my skin due to no fat affects their working but Accuchek are genuinely interested in helping.

So my question.. Have you actually spoken to Omnipod about your problems?

I feel strongly that if a pump is not working for you that there is a reason. After 30+!years as a T1 I do appreciate the cange in technology and for me the pump is far superior despite small glitches is far better for me.

I know Accuchek take my comments very seriously and have a great relationship with their pump helpline staff. They know I am very exact and yes I am a routine person but I'd rather that than have diabetes that is not controlled. In fact I look at shopping trollies at checkouts and find them staggering rather than me 'missing'.

We have one life and at this stage even if a diabetic won the lottery it wouldn't be able to buy us a non diabetic life.
 
brendan101 said:
Really I love my coffee. Heres another really strange one. I have tried apple cider vinegar. It seems to help with post meal highs. I only got some 2 days ago and my levels after breakfast today have been good. Maybe its a fluke. Its supposed to stop the liver dumping sugar into blood ie dawn phenomenon! You take 2 tablespoonfulsbefore breakfast and the ssame before bed. I will keep people posted.
Click to expand...
I heard that once... will give it a try, fo sho :confused:
 
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