Type B Insulin resistance ?

[CherryAA]

I have a friend - who has been taking insulin years after being diagnosed with diabetes a long time ago. The insulin was making him feel ill and his hba1C has hit more than 100 recently despite the big insulin doses. After months of LCHF his hba1C is still way too high at 89. He has also reduced his insulin intake.

Wearing a 24/7 monitor its clear that he is having extreme swings in blood sugar levels - 5-15 and back again with the worst being in the morning. These seem to happen with or without food of whatever type. It has also become clear that injecting insulin does not seem to make any difference to the pattern of what happens, The only thing that helps a little seems to be exercise but even then not reliably.

He seems to be profoundly insulin resistant.

He is maybe 10- 15 kg - h 1.73m, weight 89kg age 42) , his blood pressure is generally normal and as far as I can gather a recent range of standard blood tests revealed a major vitamin D deficiency – which is consistent with auto immune issues but otherwise no particular issues with liver, kidney etc.

His body responds very negatively to any vitamin tablets designed to improve the vitamin d deficiency.

The NHS is currently simply treating him as a classic T2 diabetic with doses of insulin and metformin.

I've been looking into the symptoms and am wondering if maybe he has Type B insulin resistance - which is a rare autoimmune disorder which is characterised by extreme insulin resistance and extreme vitamin D deficiency .

It appears remission - i.e. amelioration of hyperglycemia , normalisation of Hba1Cand discontinuation of insulin therapy is achievable through a combination of rituximab, cyclophoshamide and pulse steroids .

Type B it seems mainly presents in patients who are African ( which my friend is in part) and females ( which he isn't !) .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913034/


I am posting this to find out if anyone here is familiar with or knows anyone who has been diagnosed with Type B Insulin resistance - , or if any other possible causes spring to mind based on the above

Also if anyone has had tests for auto immune deficiencies - what was involved and was it done on the NHS where applicable.

If anyone can throw any light on this with any personal / anecdotal experiences please let me know either here or privately.

thanks

 

[novorapidboi26]

What insulin and oral meds is he on....?

I haven't heard of type B insulin resistance...

 

[CherryAA]

he was metformin plus insulin, but the insulin has no effect i ie he is so resistant to it that it doesnt' matter how much insulin goes in the blood sugars go there merry way. but ketocacidosis does not develop and seemingly arbitrarily the blood sugars come back down again unrelated to any medication and apartment from the horrendous blood sugars he is reasonably fit and healthy.

As far as I can see Type B insulin resistance is a rare condition, mainly in those of African origin and is a type of auto immune disease . The paper describes Type B and the fact that it seems to be capable of being put into remission with a certain cocktail of drugs . Its not something I've ever heard of, but in the circumstances it seems like he should be asking for testing to see if that is his problem as his reactions to things are unlike any I've hear described here for any of te conditions listed on this site, - hence wondering if anyne here had been tested for it at all.
its not that clear how easy it might be to test for it.

 

[Indy51]

What kind of Vitamin D3 is he taking? The compressed powder version (cheap and nasty and usually the kind prescribed by doctors) is not nearly as well absorbed as the gel capsules with an olive oil base. Might be worthwhile trying if he hasn't already done so.

 

[luceeloo]

What kind of Vitamin D3 is he taking? The compressed powder version (cheap and nasty and usually the kind prescribed by doctors) is not nearly as well absorbed as the gel capsules with an olive oil base. Might be worthwhile trying if he hasn't already done so.

I second this. The powder ones made no difference to my severe deficiency, but I now take high strength gel capsules.

 

[catapillar]

he was metformin plus insulin, but the insulin has no effect i ie he is so resistant to it that it doesnt' matter how much insulin goes in the blood sugars go there merry way. but ketocacidosis does not develop and seemingly arbitrarily the blood sugars come back down again unrelated to any medication and apartment from the horrendous blood sugars he is reasonably fit and healthy.

What insulin is he on? There are various types of insulin, saying he's on insulin is rather a vague answer to recieve any useful advice on how to use the insulin - they all require different management techniques.

If he's insulin resistant then what kind of insulin dosage is he on? What is his total daily dose?

If insulin is injected when blood sugar is climbing, then blood sugar will carry on climbing. It takes about 30 minutes for insulin to start doing anything to blood sugar in someone who is euglycaemic and fairly insulin sensitive. If blood sugars are higher, and already on the climb, if will take longer for the insulin to start having any effect on blood sugar. Insulin has to climb the wall of blood sugar before it can start breaking it down, if that wall is high then it will take longer to climb. So appearances that insulin does nothing might just be related to the standard action time, and restrictions, of bolus insulin. Appearances that blood sugars arbitrarily come back down again unrelated to medication might similarly be explained by insulin action time.

More information on how to effectively use insulin could be available if you can clarify what insulin he is on. Is it a basal insulin? Is it a bolus insulin? Is it a mixed insulin?

 

[GrantGam]

I have a friend - who has been taking insulin years after being diagnosed with diabetes a long time ago. The insulin was making him feel ill and his hba1C has hit more than 100 recently despite the big insulin doses. After months of LCHF his hba1C is still way too high at 89. He has also reduced his insulin intake.

Wearing a 24/7 monitor its clear that he is having extreme swings in blood sugar levels - 5-15 and back again with the worst being in the morning. These seem to happen with or without food of whatever type. It has also become clear that injecting insulin does not seem to make any difference to the pattern of what happens, The only thing that helps a little seems to be exercise but even then not reliably.

He seems to be profoundly insulin resistant.

He is maybe 10- 15 kg - h 1.73m, weight 89kg age 42) , his blood pressure is generally normal and as far as I can gather a recent range of standard blood tests revealed a major vitamin D deficiency – which is consistent with auto immune issues but otherwise no particular issues with liver, kidney etc.

His body responds very negatively to any vitamin tablets designed to improve the vitamin d deficiency.

The NHS is currently simply treating him as a classic T2 diabetic with doses of insulin and metformin.

I've been looking into the symptoms and am wondering if maybe he has Type B insulin resistance - which is a rare autoimmune disorder which is characterised by extreme insulin resistance and extreme vitamin D deficiency .

It appears remission - i.e. amelioration of hyperglycemia , normalisation of Hba1Cand discontinuation of insulin therapy is achievable through a combination of rituximab, cyclophoshamide and pulse steroids .

Type B it seems mainly presents in patients who are African ( which my friend is in part) and females ( which he isn't !) .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913034/


I am posting this to find out if anyone here is familiar with or knows anyone who has been diagnosed with Type B Insulin resistance - , or if any other possible causes spring to mind based on the above

Also if anyone has had tests for auto immune deficiencies - what was involved and was it done on the NHS where applicable.

If anyone can throw any light on this with any personal / anecdotal experiences please let me know either here or privately.

thanks

It's not uncommon for T2's to require hundreds of units of insulin per day. There are varying strengths available as @catapillar has pointed out. If your pal isn't using a U-300 insulin, then it's probably worth looking into.

I'll tag @ickihun who has/had severe insulin resistance and who was on high doses. If you can provide more info @CherryAA; especially regarding your pal's insulin regime and doses - then you'll get better feedback.

 

[ickihun]

Hi @CherryAA .

I am still very severely insulin resistant even thou i've halved my units due to using a good basal insulin called Toujeo300. I use novarapid for food.
My novarapid increases if i have more carb gs or under a lot of stress. Not due to emotional eating, as I don't have that but just adrenalin in times of stress is resistant to insulin, for me.

I'm a great believer in the liver has more to do with IR than the pancreas.
Carbs increase my fatty liver enzymes output and I enjoy lower fbgs if I do liver blocks.
WHEN your friend eats and how MUCH will hold the key to better management of insulin for IR sufferers.
I find eating very little for main meal then a liver block (fatty protein) before sleep (or bedtime).
Your friend might need more sleep due to his body not functioning well.
Studies have been done on side affects of insulin and proved no evidence of any or any related to excessive insulin other than hypoglycemia.
Although I wondered about odema in my inject sites as a possible side affect when I was injecting nearly 300units per day. (Which has improved but on stressful days can be worse so maybe once thought heart related).
I've heard on here someone relate to a different website stating a 1000unit IR person abroad.

It does sound like his eating routine isn't working well with his time of injections.
My old insulin was a mixed one and I needed 30mins before eating for it to be most effective.
What is his diabetic team advising?

 

[donnellysdogs]

You mention worse in morning.... this would indicate liver dump after fasting... depending what time the rises start he may need a shot of novorapid to counteract the morning rise.
If he is getting down to levels of 5 during day I would have said morning liver dump..

Depends on just how large qty of insulin shots are and what insulin he is taking.

May be that he is needing a basal/bolus regime to counteract morning rises??

 

[CherryAA]

@donellysdogs, @ickihun, @mahola,@GrantGam, @catapillar ,@luceeloo ,@indy51,@novorapid26

Thank you for all of your comments and queries, they will help me try to understand what the issues are. I'm no expert on any of this so its hard to know where to start , jsut that I can see he's struggling and I'd like to help him if I can.

Its not that easy to get precise details from him of the exact regime he as on before stopping the insulin. a few things are currently clear
a) not taking insulin has reduced his hba1C over what it was when he was taking insulin
b) he states his spikes are lower and his lows are higher since he stopped
c) he is actually complying with LCHF unless he's specifically misleading me on what he is eating when I'm not around - we work together so I see a lot of the actual food.
d) yes he does have a big morning rise which seems to be fairly independent of food
e) he's got fatty deposits where he has been injecting insulin

he is having more tests next week and is currently wearing a 24/7 monitor so at least the next attempts at medication will be coupled with being able to see what is happening.

a fairly standard pattern at present no drugs at all would seem to be - low of around 8 in the morning - gradual rise to about 15 in the morning, gradual decline back to around 6 in the afternoon big spike to around 15 in the evenings coming back down to the 8ish in the morning. He is currently doing lchf 2 meals a day and about 1 hour walking morning and evening. he has an active job as well.

His own view is that when he injects insulin - these curves just get larger - though I am not sure what he has been taught on timing - is there some kind of on-line instruction book re timing of injections we could take a look at together ? His medical team at present seems fairly clueless so it would be nice to know what sort of advice we should be expecting them to give if he is to get more out of them or change them.

All of this has then been comlicated by the fact that he had some kind of blackout last week, which apparently came form a huge spike in blood pressure, blood sugars were tested through the episode and did not rise particularly and his ketones have stayed under 1 mmol. Subsequent testing shows blood pressure is normal again . he is undergoing a battery of test to try to find the cause of that too. so far all the relevant heart, liver, kidney functions are normal

 

[ickihun]

@donellysdogs, @ickihun, @mahola,@GrantGam, @catapillar ,@luceeloo ,@indy51,@novorapid26

Thank you for all of your comments and queries, they will help me try to understand what the issues are. I'm no expert on any of this so its hard to know where to start , jsut that I can see he's struggling and I'd like to help him if I can.

Its not that easy to get precise details from him of the exact regime he as on before stopping the insulin. a few things are currently clear
a) not taking insulin has reduced his hba1C over what it was when he was taking insulin
b) he states his spikes are lower and his lows are higher since he stopped
c) he is actually complying with LCHF unless he's specifically misleading me on what he is eating when I'm not around - we work together so I see a lot of the actual food.
d) yes he does have a big morning rise which seems to be fairly independent of food
e) he's got fatty deposits where he has been injecting insulin

he is having more tests next week and is currently wearing a 24/7 monitor so at least the next attempts at medication will be coupled with being able to see what is happening.

a fairly standard pattern at present no drugs at all would seem to be - low of around 8 in the morning - gradual rise to about 15 in the morning, gradual decline back to around 6 in the afternoon big spike to around 15 in the evenings coming back down to the 8ish in the morning. He is currently doing lchf 2 meals a day and about 1 hour walking morning and evening. he has an active job as well.

His own view is that when he injects insulin - these curves just get larger - though I am not sure what he has been taught on timing - is there some kind of on-line instruction book re timing of injections we could take a look at together ? His medical team at present seems fairly clueless so it would be nice to know what sort of advice we should be expecting them to give if he is to get more out of them or change them.

All of this has then been comlicated by the fact that he had some kind of blackout last week, which apparently came form a huge spike in blood pressure, blood sugars were tested through the episode and did not rise particularly and his ketones have stayed under 1 mmol. Subsequent testing shows blood pressure is normal again . he is undergoing a battery of test to try to find the cause of that too. so far all the relevant heart, liver, kidney functions are normal

He could read dr bernsteins book and think like a pancreas.Both state the theory of small injection alteration prevent large hypos or hypers.
The blackouts could be irratic bgs and it's effect on his blood pressure.

I'm not medically trained so no medical help but I'd be tempted to start from scratch as something has gone wrong somewhere.
A basal test if he's on seperate insulins is the best place to start.

Currently he could be surfing on circulating insulin to produce a lower hba1c.

 

[CherryAA]

He could read dr bernsteins book and think like a pancreas.Both state the theory of small injection alteration prevent large hypos or hypers.
The blackouts could be irratic bgs and it's effect on his blood pressure.

I'm not medically trained so no medical help but I'd be tempted to start from scratch as something has gone wrong somewhere.
A basal test if he's on seperate insulins is the best place to start.

Currently he could be surfing on circulating insulin to produce a lower hba1c.

I will get a copy of the book. I think his current determination to not take any medications and see what is really happening without the medications is what is driving him at present. He did try injecting a very small dose to prevent a large hyper and his blood sugar rose further than when he didn't do it at all.

Something is clearly bringing down his blood sugar when it does rise at the moment even without the medications- I have no idea how long it would take before one could be sure that it was not previously injected insulin .

 

[donnellysdogs]

All insulins have peak and supposed length of time for working but our bodies are so different and also a large detail would be any food ate previously.. not just carbs but other food like a wee bag of peanuts would throw my levels up and up and up for 12 hours... but be fine for first four hours.

Same with insulin.. some on here say novorapid is out of body within 2hours... but mine is 6 hours.

The key now is to really get a log book... write times of foods, foods, and levels. Keep food 5 hours apart and also if goes back on insulin to record and really monitor it with a magnifyying glass!!

This is solveable. It will prob be him that solves in pref to a GP etc as scrutinising everything and knowing how insulun works is key to progressing forward...

 

[ickihun]

I will get a copy of the book. I think his current determination to not take any medications and see what is really happening without the medications is what is driving him at present. He did try injecting a very small dose to prevent a large hyper and his blood sugar rose further than when he didn't do it at all.

Something is clearly bringing down his blood sugar when it does rise at the moment even without the medications- I have no idea how long it would take before one could be sure that it was not previously injected insulin .

How long has he been without injected insulin and what is his premeal reading and 2hr post meal readings?

More importantly tell him, I personally don't think he shouldstop his insulin therapy like this.
If in the future he may need insulin, he will have a mental melt down.
Doing things in a controlled methodical manor will always reassure him of the way his body works. (With or without injected insulin).
This isn't the right time to go cold turkey if irratic health is hampering him.
I don't know anyone who would sanction such a foolhardy attitude to injectable insulin therapy.

 

[CherryAA]

I

How long has he been without injected insulin and what is his premeal reading and 2hr post meal readings?

More importantly tell him, I personally don't think he shouldstop his insulin therapy like this.
If in the future he may need insulin, he will have a mental melt down.
Doing things in a controlled methodical manor will always reassure him of the way his body works. (With or without injected insulin).
This isn't the right time to go cold turkey if irratic health is hampering him.
I don't know anyone who would sanction such a foolhardy attitude to injectable insulin therapy.

Currently he is adamant that he feels so much better without the insulin that he is not going to take it again and that the figures he is now seeing a " substantially better " than those he had with insulin. Its also fair to say that he didn't go " cold turkey " all together , instead he brought down his insulin over time , a couple of units at a time - and he has been seeing the doctor while doing so . Currently he is recording all of his data on the basis you suggest before a meeting with the doctor on Wednesday. The point is though that his glucose levels are not really changing as a result of food, they are simply heading skywards when they feel like it and coming back down on the same random basis.

In the meantime another question for people .

My friend decided to fast for a day - having done so - he started the day at 8 , hit a peak of 26, but then that turned into a hypo of around 3 with no medication which he has converted back to 5 ish with some orange juice. Again scary stuff, but he informs me he saw these peaks and troughs all the time when on insulin too and of course if his body is naturally producing hypos, then he does not want to inject insulin and potentially make that worse .

"from the Type B study .
"in the type B syndrome, a highly specific autoantibody is produced against the cell surface insulin receptor and the interaction between the autoantibody and the receptor is the basis for the pathophysiology (7,8,9). The syndrome usually presents with extreme hyperglycemia, which may be followed by either fasting or reactive hypoglycemia. Rarely hypoglycemia in isolation may be seen (1). These different manifestations of the antibody receptor interaction can broadly be explained by quantitative differences in antibody titers. The autoantibody acts as a partial agonist, and so at low concentration it elicits a hypoglycemia response. At higher concentrations it chronically down-regulates cellular responsiveness to insulin, a phenomenon that most commonly dominates in vivo (1,10,11)."

I participated in the Tim Noakes study on the effects of an LCHF diet. That had 29 participants. All but two of those saw vast improvements in fasting glucose, fasting insulin and Hba1C, and 8 of the 11 were able to come off insulin completely.

Two individuals appear to be little helped by LCHF, they still have high hb1a1C, 95 and 75 respectively and matching high fasting glucose and fasting insulin numbers.

Looking at the interim data the study produces , it doesn't look like the insulin helped those people much either in the interim when they still had very high numbers as they began the LCHF diet.

27 of the 29 participants had pretty much the same results as each other and the 2 are complete outliers just like my friend.

This is leading me to wonder if in fact the issue is not that some people respond differently to an LCHF diet when they have T2 diabetes, but instead that these people may not have T2 diabetes, instead they have some form of autoimmune disorder which presents like diabetes, but for which the treatment protocol may be utterly different as per the paper I posted.

Given the way doctors roll out the standard prescriptions as soon as diabetes is diagnosed which is when hba1C is above normal , it leads me to wonder how the " very rare -" Type B insulin resistance - insulin receptor antibodies " ( which none of us has heard of) - gets diagnosed at all.

So query - is there anyone on here diagnosed as T2 who has simply found that LCHF did not help them control their blood sugar, ? if that is the case, are you injecting insulin? has insulin actually helped to bring the figures into the normal range ? and finally has anyone in those circumstance actually been tested for insulin receptor antibodies - an autoimmune disease?