Do the "recovery" threads ever get you down?

[Lucyr]

The more Type 2s do what they can do to cure themselves, the more funding will be available to try to find a cure, or at least less burdensome treatment regimes, for us Type 1s.

What about those of us in the worst of both worlds? Diagnosed t2, low insulin production and no likelihood of reversing diabetes as you can’t make your pancreas produce more insulin when it’s not making much, but no hope of even tech that’s become basic care to T1s like sensors let alone pumps, loops or whatever might be on the horizon.

Yet saying that, no it doesn’t get me down to see T2s reversing their diabetes. I feel its unfair that T2 is treated as second class to T1, and it makes me angry when T1s say certain things about T2s. But there’s way worse things to have than diabetes of any type. If I had a choice of getting rid of either diabetes or M.E, I’d get rid of the M.E no questions.

 

[TheClockworkDodo]

So would I @Lucyr

 

[Dragonheart]

What about those of us in the worst of both worlds? Diagnosed t2, low insulin production and no likelihood of reversing diabetes as you can’t make your pancreas produce more insulin when it’s not making much, but no hope of even tech that’s become basic care to T1s like sensors let alone pumps, loops or whatever might be on the horizon.

Yet saying that, no it doesn’t get me down to see T2s reversing their diabetes. I feel its unfair that T2 is treated as second class to T1, and it makes me angry when T1s say certain things about T2s. But there’s way worse things to have than diabetes of any type. If I had a choice of getting rid of either diabetes or M.E, I’d get rid of the M.E no questions.

This always confuses me. The type 2 definitions you see often talk about insulin resistance or insulin not being effective (same thing) and not having enough insulin to get the job done. And that last part typically means not enough to overcome the high insulin resistance usually rather than an actual low production level (and might eventually kill off their beta cells through overworking them). Most of us T2 actually have high production abilities if tested

However there does seem to be a section classed as type 2 that really do have limited insulin production unrelated to IR and it seems crazy that (unlike a type 1 in the same situation through an autoimmune cause or a type 3c via a physical damage to the pancreas) these actual low insulin producers get shoved in with the insulin resistant people whose issue is really quite different.

Even more strangely most type 2 get treated, medically, as if they don’t produce enough like this latter group and that the answer is to add yet more insulin, the opposite of what we really need.

Or is it this low production group of type 2’s are really misdiagnosed type 1/LADA ??? Possibly by drs thinking a negative antibody or limited antibody panel is conclusive that it’s not type 1 or by drs that believe type 1 only occurs in children or suddenly.

Or there should be a new group somewhere closer to type 1 than the rest of the IR type 2’s to avoid this confusion.

Actual Insulin testing, not just assumptions, at diagnosis, and on deterioration, for everyone would mean a lot more people get the appropriate classification and treatment options from the start. Anyone with a low level should also be tested for all the other antibodies if anti gad is negative.

 

[Spathiphyllum]

This always confuses me. The type 2 definitions you see often talk about insulin resistance or insulin not being effective (same thing) and not having enough insulin to get the job done. And that last part typically means not enough to overcome the high insulin resistance usually rather than an actual low production level (and might eventually kill off their beta cells through overworking them). Most of us T2 actually have high production abilities if tested

However there does seem to be a section classed as type 2 that really do have limited insulin production unrelated to IR and it seems crazy that (unlike a type 1 in the same situation through an autoimmune cause or a type 3c via a physical damage to the pancreas) these actual low insulin producers get shoved in with the insulin resistant people whose issue is really quite different.

Even more strangely most type 2 get treated, medically, as if they don’t produce enough like this latter group and that the answer is to add yet more insulin, the opposite of what we really need.

Or is it this low production group of type 2’s are really misdiagnosed type 1/LADA ??? Possibly by drs thinking a negative antibody or limited antibody panel is conclusive that it’s not type 1 or by drs that believe type 1 only occurs in children or suddenly.

Or there should be a new group somewhere closer to type 1 than the rest of the IR type 2’s to avoid this confusion.

Actual Insulin testing, not just assumptions, at diagnosis, and on deterioration, for everyone would mean a lot more people get the appropriate classification and treatment options from the start. Anyone with a low level should also be tested for all the other antibodies if anti gad is negative.

Everyone who gets a high HbA1c result should get a C-peptide test. This test used to be time-consuming and expensive-- but it's not anymore, and hasn't been for years! (See for example https://news-archive.exeter.ac.uk/featurednews/title_707155_en.html .)

This would mean that you and your clinician would know straightaway (well, within 7 days or so) how much insulin your own body was producing, which gives a much clearer indication of what sort of diabetes you have and what treatment you need.

I think most GPs' knowledge is just way out-of-date; they still think C-peptide tests are expensive and time-consuming so don't consider them ... and then they waste money and time on what turn out to be totally inappropriate treatments.

 

[trophywench]

GPs are only allowed to order certain tests especially where not every Path Lab does certain tests so if the sample has to be sent eg to Exeter instead of just up the road to the local hospital lab, the C-peptide sample must be taken and frozen within a specific timeframe and within specific guidelines about how to do it and to transport it to wherever.

Our GP surgery no longer offers blood tests, we have to prebook an appt at various places in the local scheme and so we usually go to a pharmacy not far from the surgery for ours although we never ever use it for anything else - we use the pharmacy in the same building as the surgery - who like the docs don't offer phlebotomy.

 

[Docb]

This always confuses me. The type 2 definitions you see often talk about insulin resistance or insulin not being effective (same thing) and not having enough insulin to get the job done. And that last part typically means not enough to overcome the high insulin resistance usually rather than an actual low production level (and might eventually kill off their beta cells through overworking them). Most of us T2 actually have high production abilities if tested

However there does seem to be a section classed as type 2 that really do have limited insulin production unrelated to IR and it seems crazy that (unlike a type 1 in the same situation through an autoimmune cause or a type 3c via a physical damage to the pancreas) these actual low insulin producers get shoved in with the insulin resistant people whose issue is really quite different.

Even more strangely most type 2 get treated, medically, as if they don’t produce enough like this latter group and that the answer is to add yet more insulin, the opposite of what we really need.

Or is it this low production group of type 2’s are really misdiagnosed type 1/LADA ??? Possibly by drs thinking a negative antibody or limited antibody panel is conclusive that it’s not type 1 or by drs that believe type 1 only occurs in children or suddenly.

Or there should be a new group somewhere closer to type 1 than the rest of the IR type 2’s to avoid this confusion.

Actual Insulin testing, not just assumptions, at diagnosis, and on deterioration, for everyone would mean a lot more people get the appropriate classification and treatment options from the start. Anyone with a low level should also be tested for all the other antibodies if anti gad is negative.

We might have our differences on some issues but I can relate to the point you are making here @HSSS.

My own experience, and it is shared by some others on the forum, is that I am not overweight and the notion of losing body weight to control blood glucose is an inappropriate strategy. Something other than excess fat impairing insulin use is going on. There are two things I am absolutely clear on and that is that, for me, controlling carb intake is important in keeping things under control and that gliclazide is very effective in lowering my blood glucose levels.

With no expertise other than looking at chemical systems in a previous life, this points me towards the idea that my auto control system for some reason or other is not working well. It might be that my pancreas is getting old and not making insulin as fast as it is needed and so trying to match carbohydrate intake to what it can cope with is a good idea. It might be that whatever mechanism switches on the insulin production cells is a bit out of kilter explaining the effectiveness of gliclazide. Or maybe something else is going on.

Which ever way you look at it, people like me belong in a different box to those whose primary problem is most likely due to excess fat.

My thought is that it is time to take a long hard look at the protocols used to assess those with blood glucose control issues with a target of being more efficient at getting people on the best pathway for them. Unless that is done then the increasing numbers of people with blood glucose control issues are going to be an ever increasing burden on the health care system.

Usual caveat, I'm talking that thing known as T2 diabetes.... T1 diabetes is a whole different (and much easier to understand) ball game.


PS. Here's a wild thought. Maybe we should loose the word diabetes because it has too much baggage. I for one find myself more and more referring to blood glucose control issues rather than diabetes.

PPS. I'll go and find my tin hat.

 

[bulkbiker]

We might have our differences on some issues but I can relate to the point you are making here @HSSS.

My own experience, and it is shared by some others on the forum, is that I am not overweight and the notion of losing body weight to control blood glucose is an inappropriate strategy. Something other than excess fat impairing insulin use is going on. There are two things I am absolutely clear on and that is that, for me, controlling carb intake is important in keeping things under control and that gliclazide is very effective in lowering my blood glucose levels.

With no expertise other than looking at chemical systems in a previous life, this points me towards the idea that my auto control system for some reason or other is not working well. It might be that my pancreas is getting old and not making as fast as is needed and so trying to match carbohydrate intake to what it can cope with is a good idea. It might be that whatever mechanism switches on the insulin production cells is a bit out of kilter explaining the effectiveness of gliclazide.

Which ever way you look at it people like me belong in a different box to those whose primary problem is excess fat.

My thought is that it is time to take a long hard look at the protocols used to assess those with blood glucose control issues with a target of being more efficient at getting people on the best pathway for them. Unless that is done then the increasing numbers of people with blood glucose control issues are going to be an ever increasing burden on the health care system.

Have you ever had your fasting insulin or c-peptide tested?

 

[Docb]

No, and when I asked about it sometime ago, I was told by my GP that it was not appropriate. I know a bit more now but even so I would expect the same response.

I would also suggest that in this day an age you need a complete rewrite of the protocols before the system would begin to think that such things might be a good idea.

 

[Dragonheart]

gliclazide is very effective in lowering my blood glucose levels.

As do insulin or a number of other medication for others. However that still doesn’t prove if you are actually deficient in insulin production or if you hit the nail with a big enough hammer (your own normal excessive insulin and then even more forced out by the glic) then it finally does the job of overcoming huge insulin resistance. High glucose is a symptom of something going wrong but doesn’t identify exactly what. And in the case of most type 2 the IR is the underlying cause that needs addressing. Adding more insulin deals with the symptoms of high glucose but doesn’t nothing to reduce the actual problem and the other issues hyperinsulimia causes. It’s why the medication treatment route leads to T2 being a progressive disease as all it’s doing is adding water to a leaking bucket rather than fixing the leak.

The question really needs to be why are your glucose levels high - resistance or lack of production and if the latter what’s causing it (autoimmune, damage, age etc)

We might have our differences on some issues

just one minor but polite one that I’ve seen so far. All good as far as I’m concerned.

 

[bulkbiker]

No, and when I asked about it sometime ago, I was told by my GP that it was not appropriate. I know a bit more now but even so I would expect the same response.

I would also suggest that in this day an age you need a complete rewrite of the protocols before the system would begin to think that such things might be a good idea.

I agree on the system needing a complete overhaul but for your own peace of mind I would have thought it would be a good idea.

 

[childofthesea43]

I agree on the system needing a complete overhaul but for your own peace of mind I would have thought it would be a good idea.

I readily add my own firm agreement to these sentiments. We ostensible T2s are not being truly diagnosed in the standard GP system. We get an A1c value plus a guess as to why it is elevated plus one or other vague pointers on how to fix it. The system is just lazy and incurious, but I don’t blame the surgeries given the constraints and guidelines under which they operate. So here we are, most of us on our own fix-it-yourself journeys without any clear idea of what is actually wrong inside us.

 

[bulkbiker]

So here we are, most of us on our own fix-it-yourself journeys without any clear idea of what is actually wrong inside us.

I've had a few private tests for insulin resistance and fasting insulin.

 

[Docb]

I agree on the system needing a complete overhaul but for your own peace of mind I would have thought it would be a good idea.

My inborn curiosity would agree with you but my more practical side says there is little to be gained other than a bit of understanding. But thats me, an older fella wearing out. My thoughts are more for the early middle aged where getting a decent understanding of what underlies their poor blood glucose control would go a long way cutting down on the time, effort and effectiveness when treating it.

And @HSSS whereas I might not go quite as far as you I would suggest that you can't manage something if you don't understand it and don't have something against which to progress.

 

[Deleted member 21371]

My inborn curiosity would agree with you but my more practical side says there is little to be gained other than a bit of understanding. But thats me, an older fella wearing out. My thoughts are more for the early middle aged where getting a decent understanding of what underlies their poor blood glucose control would go a long way cutting down on the time, effort and effectiveness when treating it.

And @HSSS whereas I might not go quite as far as you I would suggest that you can't manage something if you don't understand it and don't have something against which to progress.

I cant see any point in testing me when I was diagnosed at 50.
It was a bad lifestyle.
I was definitely insulin resistant, I slotted into the morbidly obese internal fat category stopping insulin production.
Ramping up my insulin production brought my BG levels down.
Exercise and losing weight reset my insulin resistance and production.

I agree that was just me, but to be brutally honest, the majority of type two are overweight at diagnosis, if we can clear them out, it'll leave more resources for those that don't fit that specific category.

 

[helli]

It is saddening reading the comments from @Docb and @HSSS
My diagnosis (in my 30s) was 20 years ago. It sounds as if what people with type 2 get today is the same as I got 20 years ago except my blood test was not a hba1c. It was a pee test.
Scarily, the only reason it was decided that I had Type 1 was because I was "too thin to be type 2". It feels like if that happened today, I would be fighting for a c-peptide (which has never happened) because I would instantly be assumed to have type 2 due to my age.

 

[bulkbiker]

My inborn curiosity would agree with you but my more practical side says there is little to be gained other than a bit of understanding

And maybe the correct treatment?

 

[gillrogers]

I think i get what yoy mean.I have a problem with my kids and hubby tucking into all sorts as and when they want to. But i keep it to myself for the most. Its doubly worse too with cos of my gluten intolerance. They dont like gluten free cakes and its not worth me making them just for me. Im worse when im hungry but wont eat until my meal time as i dont want to wind up stacking insulin cos ive over done it as my bolus rates are hugley differant for each meal.

 

[Satan’s little helper]

@Satan’s little helper there is nothing to spill.
I am human. I have days where things aren’t as great as they usually are.
There are days when I get more frustrated by bureaucracy at work, There are days when I get more frustrated by a persistent injury which is triggered by exercise. There are days when I don’t sleep as well as I would like. There are days when it rains non stop when I had planned to take friends out sightseeing. There are weeks when I get more hypos. There may be days when I have personal problems that I don’t want to share with strangers.
I usually overcome these days or weeks by giving myself a little kick and recognise the value of formal processes at work, remember I can exercise far more than many at my age, sleep better after a day of exercise, enjoy our beautiful greenery thanks to the rain, raise my target BG to improve hypo sensitivity, but still do not want to share my personal problems.

Just because I have these days, doesn’t mean I do not consider myself an optimistic person who wants to enjoy life.

Thanks for replying.
You’ve covered more ground than I was expecting.

Whatever your personal problems are, (I would agree with the non-disclosure.) I wish you well resolving them.

 

[pawprint91]

Scarily, the only reason it was decided that I had Type 1 was because I was "too thin to be type 2".

I was diagnosed last year (at the age of 30), and this was exactly the reason I was given too by a consultant on my day of diagnosis. I still sometimes wonder if I could be type 2?! (Especially when you sometimes see scaremongering in the news about type 1’s being diagnosed younger in life (am aware this is not true) and/or the symptoms being the same - and this is nothing against being a Type 2, I just want to know I’ve been given the correct diagnosis!)

I did have an antibodies test done on my blood last time I saw a consultant (August 2022) who told me I and I had 3/5 present; waiting on the fourth, negative on the fifth. That was the closest I had come to being given a definite “you are type 1”. (Apparently the more you have, the higher your chances are of getting Type 1?)

My blood test did test for hba1c and it was through the roof at 158 (17%) upon diagnosis - apologies as I have only skim read this thread with a tired brain, but I don’t know if this is more indicative of type 1 than type 2?

 

[rebrascora]

Im worse when im hungry but wont eat until my meal time as i dont want to wind up stacking insulin cos ive over done it as my bolus rates are hugley differant for each meal.

There really is no reason why you should be going hungry Gill. It is only stacking corrections that they advise against. Boluses for meals can be added on and this is not stacking. So If I went to a restaurant for a meal, I would bolus for the main course and then if I decided I was going to have a dessert afterwards, then I would inject some more insulin to cover that.
If you really don't want to add more insulin between meals and you are hungry then have a low carb meal or snack. An omelette is quick and easy and filling, or some cooked meat and coleslaw or some tuna and mayonnaise wrapped in lettuce leaves or a chunk of cheese or a pot of olives if you like them. Find low carb snacks that you like and have plenty of them available for when you need them.... BUT.... it is absolutely fine to inject insulin for carbs in between meals if you want a chocolate biscuit or a piece of cake or a scone if you can find some GF ones. If you are between two different ratios then always apply the one that uses less insulin because avoiding a hypo should be the first consideration. You can correct at your next meal provided you take into consideration that there may still be active insulin on board from the snack and take that into consideration.

This is your new life and going hungry should not be part of it so you have to learn how to manage it and not be frightened off it. Hypos happen to us all from time to time despite our best efforts. I used to average one a day until I got Libre 2 and can now head them off before they happen. Don't let a hypo that happened once a while ago when you had a snack stop you from experimenting until you figure out how to manage snacks with your insulin.