Type 1 diabetics, have you ever experienced this?

[kevinmartinuk_]

Dear all,

I really, really need your help please? I have been a Type 1 diabetic for 16 years, after inheriting it from my mother when I was 39. She also experienced problems that diabetes endocrinologists could never answer. She was happily used for testing new devices & for diabetic trials from Guy's Hopsital in London in the 1980's, I now live in Sheffield.

My huge problem, that is currently destroying my life, is this. Four months ago, I had my Medtronic 640G insulin pump upgraded to the closed loop Tandem Slim x 2 insulin pump. The same problem has occured with both pumps, so i'm guessing this is not a pump problem?

At several times in the last 2 years, I have experienced what can only be called unimanigable insulin resistance, where my insulin is simply not working! Normally I inject 1 unit of Novarapid for every 10g of carbohydrates. The problem I'm having, is at some times after injecting 15 minutes before my meal my sugars just keep rising & will not come down. I change the canular position around my abdomen & stomach area but admit there are some signs of lipohypertrophy (lump of fatty tissue under my skin).

When the sugar keeps rising I am forced to pump more insulin! I wait a couple of hours & when it still keeps rising, I go to my emergency "plan b" & inject more novarapid with my insulin pens. Many times even this has not worked, my sugars have risen to 25mmol/L!

It is important to say all the insulin (cartridges & vials) have always been in the fridge & are in date. Of course after my BG rapidly rising, I changed the canular posiion to less used sites. I changed once to my upper thigh & once to my buttocks. Even though the canular (autosoft 90) seems to have been perfectly inserted, the novarapid insulin pumped has once again had no effect on lowering my sugars! On 2 occasions I had injected a total of 60 units of insulin (pump & pen) for just 2 slices of brown bread, instead of the normal 4. About 6 or 7 hours later (when the insulin should no longer work) I have a hypo!!

I have just changed the canular position to my upper buttocks, where the insulin is currently working & i'm so relieved. Many times after the insulin has not functioned, a few days later, it suddenly starts works normally again?

Please please, has anybody else out there, had any similar problems or have any advice for me on how to resolve this nightmare problem, that is impossible to live with? A top endocrinologist in my area Dr ****** cannot give me the answer, so I am hoping somebody on here can?

Thanks in advance,

Kevin

Edited by mods to remove medic name to conform with forum rules.

 

[EllieM]

Hmm, 57 years of T1, 2 years on a tandem. Some lipohypertrophy on my lower left stomach, but I don't inject or cannulise (Is that a word?) near there.

I find that if my bg goes over about 10 I can get much more insulin resistant ie a ratio of 1 unit to 1mmol/L instead of 1 to 3.... This happened pre-pump, but I notice it more with the pump because the tandem algorithm can't cope. If I go over 16 then the insulin seems to act like water (and yes this happened on MDI too)

Luckily I can take control of the bolusing when this happens and over-rule the pump and inject more anyway. The thing that sets me off the most is having a meal when my bg is already rising (eg over 8 at the beginning).

How have I improved my situation? I found that increasing my basal rate on the tandem kept my bg generally lower (in the 5s and 6s) and if I start there I the unexpected rises are much less frequent. And the overall amount of insulin is less because I need less correction doses...

I didn't notice cannula or injection position making much difference. For me the issue is the rapid increase of insulin resistance with higher bgs. So I try not to eat with a raised bg...

I stress that this is my personal experience and is not medical advice

 

[Fouad777]

Dear all,

I really, really need your help please? I have been a Type 1 diabetic for 16 years, after inheriting it from my mother when I was 39. She also experienced problems that diabetes endocrinologists could never answer. She was happily used for testing new devices & for diabetic trials from Guy's Hopsital in London in the 1980's, I now live in Sheffield.

My huge problem, that is currently destroying my life, is this. Four months ago, I had my Medtronic 640G insulin pump upgraded to the closed loop Tandem Slim x 2 insulin pump. The same problem has occured with both pumps, so i'm guessing this is not a pump problem?

At several times in the last 2 years, I have experienced what can only be called unimanigable insulin resistance, where my insulin is simply not working! Normally I inject 1 unit of Novarapid for every 10g of carbohydrates. The problem I'm having, is at some times after injecting 15 minutes before my meal my sugars just keep rising & will not come down. I change the canular position around my abdomen & stomach area but admit there are some signs of lipohypertrophy (lump of fatty tissue under my skin).

When the sugar keeps rising I am forced to pump more insulin! I wait a couple of hours & when it still keeps rising, I go to my emergency "plan b" & inject more novarapid with my insulin pens. Many times even this has not worked, my sugars have risen to 25mmol/L!

It is important to say all the insulin (cartridges & vials) have always been in the fridge & are in date. Of course after my BG rapidly rising, I changed the canular posiion to less used sites. I changed once to my upper thigh & once to my buttocks. Even though the canular (autosoft 90) seems to have been perfectly inserted, the novarapid insulin pumped has once again had no effect on lowering my sugars! On 2 occasions I had injected a total of 60 units of insulin (pump & pen) for just 2 slices of brown bread, instead of the normal 4. About 6 or 7 hours later (when the insulin should no longer work) I have a hypo!!

I have just changed the canular position to my upper buttocks, where the insulin is currently working & i'm so relieved. Many times after the insulin has not functioned, a few days later, it suddenly starts works normally again?

Please please, has anybody else out there, had any similar problems or have any advice for me on how to resolve this nightmare problem, that is impossible to live with? A top endocrinologist in my area Dr ****** cannot give me the answer, so I am hoping somebody on here can?

Thanks in advance,

Kevin

Edited by mods to remove medic name to conform with forum rules.

Hi Kevin,
I’m really sorry you’re going through this. That sounds so stressful and exhausting.

I just wanted to reply because my son has diabetes he is 11years old , so I know how frightening and frustrating blood sugar problems can be.

From what you described, I wonder if it could be related to absorption issues, especially with the lipohypertrophy and the fact that the insulin seems to work better when you use a different site. Sometimes it seems like the insulin does not work properly in certain areas, then suddenly starts working later, which could maybe explain the very high readings and then the hypo afterwards.

It might be worth asking your diabetes team again about avoiding the overused sites for a while, checking carefully for scar tissue or lipohypertrophy, and whether a different cannula or infusion set could help.

Best wishes to you.

 

[CheeseSeaker]

Hi @kevinmartinuk_ - may have missed this in your write up - what insulin are you using?

Om MDI i had huge issues after many years injecting into the same places on my legs (should have been using 10-15 units of Novorapid, was injecting 80-90 (its would have killed a horse if it had absorbed properly ) - I now can't use those areas.

I switched a few years ago to ultrafast (Fiasp, and Lyumjev at different times) and find them to be much more site-rotation specific. If I re-use the same bit of my stomach or sides for more than a few cannula switches I get resistance and BG goes North.

I also found that Lyumjev worked brilliantly for a few weeks - then I got huge resistance, so eventually gave up and switched to Fiasp (suite me better) but still get resistance if I use the same bits.

I now do site rotation each time I change cannula and it works - give each site a rest (I use 4 or 5 rotations before going back to the area) - any signs of lipohypertrophy and simply don't use it. I find sides, stomach and flappy bits on the rear of my sides work well as used to inject in legs pretty much all the time for 40+ years.

 

[Aargh!_]

Hi, I've had type 1 for 58 years now and yes it's a problem for me too. I injected always in my legs and changed to a pump in 2004. I tend to use my side a bit above and a bit below, sometimes on the same side towards my back and then swap to the other side. This means I get a total of eight different sites but they've still been used for many years. Sometimes if I'm getting really bad sugars I remove a cannula and place it somewhere different and presto even though I have to stick it down with tape it improves so quickly. I usually run between 81 and 90% in range. Sometimes better and occasionally less. The gist of the story is that you're not alone.

 

[ElenaP]

...... canular (autosoft 90) seems to have been perfectly inserted, the novarapid insulin pumped has once again had no effect on lowering my sugars!

Hi @kevinmartinuk_ I have been using Tandem t:slim for four years. Within the first couple of weeks I found that the autosoft 90 teflon cannula did not suit my skin, nor did it seem to let enough insulin through. There was an improvement when I changed to TruSteel cannulae. However, at times, I need to inject corrections with a pen. I am on NovoRapid insulin. . On the plus side, this pump has stopped my frequent night-time hypos.

 

[andyndee]

Hi Kevin sorry to hear your having issues I use Lyumjev it's supposed to be a very fast acting insulin and most of the time it is very fast. I work 4 on 4 off nights I'm normally eating my dinner at 1am on a work night breakfast is 06.10 ish and a meal about 16.30.
My sugars was spot on I mainly inject around the stomach area sometimes upper arm and very occasionally the tops of my legs.
I have a libre 2plus connected to my phone like you I do 1 to 10, my sugars can be around 8 I know exactly how many carbs I'm going to eat I take my jab at 1am walk about a minute make a brew start eating it's normally 4 slices of brown bread 44 carbs fridge raiders almost nothing maybe a paket of baked crisps 17 carbs only occasionally so so 6 units or 4 or 5 if no crisps depending on how high they are before I take the jab.
We have 45 minutes for break by the time I go back my alarms going off to say my sugars are dropping or going through the roof I've tried dropping 1 unit or increasing it by 1 nothing seems to be calculable any more and it's been like that for about 3 years or so I'm 66 in November I was promised a pump last year but I still don't have it I normally use lucozade and jelly babies to bring my sugars up I worked out 1 jelly baby to be about 4 carbs I'm not sure how accurate that it tbh.
I also have issues with the sensors it can be sitting stable at lets say 7 then the alarm goes off at 4 and it's dropping into the 2s bear in mind the alarm is set at 5.6 so then it's sit in my office 2 jelly babies and 3rd of a bottle of lucozade call it 18 to 20 carbs to right it and if it doesn't take more of both to get it back up in the green. I have another annual review clinic on the second of June they won't be happy again I'm sure.
I'm now slightly concerned after hearing your story if pumps are worth it ?.

 

[Jasmin2000]

Hi Kevin, just adding another facet to the equation here as I have experienced the endless rise in BG and now learned that just injecting (so-called) fast acting doesn't bring it down as fast as you'd like. So here are my take-homes:
1. My fast-acting (Apidra) starts after 30 min and peaks at 1-2 h and drops by 4 hours according to the guidelines. But not always, depending on diet and exercise I can move the peak backwards and forwards resulting in a lovely downward plummet that demolishes that never ending plateau - or alternatively kicks in hours too late and produces a red LO on my Libre.
2. The key to moving it is the carb/protein balance. I can eat a few carbs but get a long-lasting BG spike and plateau if I eat a lot of protein with them. The spike takes some hours as it is coming from protein glyconeogenesis (sugar from protein) but once it's off there's no stopping it or getting it down quickly.
3. Injecting fast-acting in this situation is not good - and if you've also had a bunch of fats in the diet insulin will be hiding but not dead. So some hours later it will come back and kick you. In the meantime your BG is merrily holding out at 12-14!
4a. The fast recovery. Fastest way to drop a BG spike is fast-acting (I take 3-5 units for the aforementioned spike) and go for a walk for 30-40 min. Works every time and you're not in danger of a hypo from accumulated insulin.
4b. At night I sometimes wake up with this dumb plateau at 12 from a late cheese feast - what now? Same, as above night and day. The alternative is to take 3-5 units and sleep but the plateau will take hours without exercise.

That's my experience with these odd spikes but maybe for you it's not a protein issue and could be a liver response to previous long periods of low BG.