Help !!

[RIFRAF]

Hi all,
Relatively new to the World of Diabetes. Age early 50's, male. I was diagnosed as Type 2 late January this year following a routine blood test for something else. The usual advice...go away, lose weight, don't need anything else etc. Fast forward to late April and I collpased ending up in Hospital for a week with Keto Acidosis to be told I'm actually Type 1 and should have been taking insulin (which I now am). I now wear a Libre View sensor as well.
I've been feeling crappy for the last week so on Friday rang my GP who eventually rang me back and arranged for me to see a Nurse Practitioner. On seeing her she advised I got to Hospital which I did Friday evening. Symptons - Abdo pain (same area that I had originally in April when I collapsed) and stonking headache which I can't shift. After various blood tests Consultant seems to think it's something to do with my bowel (something else for the list!!). Discharged awaiting further examination with pain relief which will no doubt happen in about 6 months !!. The problem I'm experiencing is that my blood sugar just keeps hitting the floor (3.0 - at which point I cram sugary foods in to get it rise) and I've spent in total around 15% in target zone on each of the last 3 days as opposed to around 75% of the time. I rang the Diabetes Centre at my local Hospital who advised this morning that I reduce my insulin a couple of units. My concern is that if I took insulin I'm going to end up putting myself into a coma so haven't since yesterday morning when I got discharged....... Yes, I can hear you all screaming I'm adding to the problem etc. but I'm at a point where I don't know what to suggest to myself. If I ring my GP he'll tell me to call the Diabetes Centre (which I've done and she didn't seem to understand what the issue is). I've already been discharged by the Hospital.... I called in this morning to pick up meds as the Pharmacy were taking about 6 hours to dispense! Speaking with one of the Sisters, she did say your Blood sugar does tend to play around when you're ill. Suggestions on a postcard to.........
Thanks !

 

[rebrascora]

Hi and welcome

Sorry to hear you are having such a rough ride. It is not uncommon for middle aged adults to be misdiagnosed as Type 2 initially because most GPs are under the impression that Type 1 only exhibits in babies, children and young adults whereas there are actually quite a few of us late starters here on the forum. I was diagnosed last year aged 55. Thankfully I managed to avoid hospital and DKA.

Can you give us a bit more information like which insulins you are on and what doses and when you normally take them?

Are you saying that you haven't used any insulin at all since yesterday? If so, what time did you last inject and what are your BG levels at the moment and what have you been eating since you last injected.
Pain usually causes your BG to go high, so it is surprising you are going low, but we are all individuals and can react in different ways.
When were you going low? Was it after meals or between meals or during the night perhaps?

 

[Inka]

Hi @RIFRAF

Sorry you’re having so many problems. Is the bowel thing possibly coeliac disease? That can cause low blood sugar. Are you eating at all?

Even if you’re not eating, it’s risky to stop all insulin - especially when you’ve had DKA in the past. What’s your blood sugar like? Have you stopped your basal insulin too?

 

[Bexlee]

Hi and welcome to the forum @RIFRAF
Reading what you’ve written and thinking a little out of the box.....When your libre says 3.0 etc are you checking with a finger prick?

Occasionally you can get a dud sensor which claims you’re lower than you are (Abbott’s do replace them generally speaking). Maybe you’re feeling ill because you are higher than you think and not taking your insulin?

I know a lot of things like illness can cause levels to be lower for a period of time etc but it may just be worth checking if you haven’t already.

I had a dud sensor 3 weeks ago claiming I was 3.3 and I was 6.5 3.9 and I was 7.8.
As @rebrascora says what insulin’s do you usually take.
Hope you feel better soon

 

[RIFRAF]

Hi and welcome

Sorry to hear you are having such a rough ride. It is not uncommon for middle aged adults to be misdiagnosed as Type 2 initially because most GPs are under the impression that Type 1 only exhibits in babies, children and young adults whereas there are actually quite a few of us late starters here on the forum. I was diagnosed last year aged 55. Thankfully I managed to avoid hospital and DKA.

Can you give us a bit more information like which insulins you are on and what doses and when you normally take them?

Are you saying that you haven't used any insulin at all since yesterday? If so, what time did you last inject and what are your BG levels at the moment and what have you been eating since you last injected.
Pain usually causes your BG to go high, so it is surprising you are going low, but we are all individuals and can react in different ways.
When were you going low? Was it after meals or between meals or during the night perhaps?

Hi Rebrascora ....
Thanks for the welcome.... I'm really chuffed that I've had 3 responses in such a short space of time.

DKA.... Not something I'd like to repeat...... The consultant on Day 6 said 'just to let you know... that last sleep you said you were thinking of having was quite possibly going to be the last sleep'..... Drama Queen material but made me think !!!!

I'm on Novorapid 3 x times a day brekky, lunch and tea (10 units on each) then Lantus 30 units at night

I last had insulin at breakfast me yesterday - as we speak I'm 5.5 having spent most of the day as a ping pong between 12 and 3.0 solely affected by food (or biscuits). Food does cause it to go high (9) but then drops like a stone a couple of hours later back to 3 (and a bit).

During the night I'm low all the way through (3.... which worries me if it were to drop any more). Is this an acceptable level ?? Lots of stuff to learn I guess !!

Thanks for the response and nice to hear from you.

Nick

 

[RIFRAF]

Hi @RIFRAF

Sorry you’re having so many problems. Is the bowel thing possibly coeliac disease? That can cause low blood sugar. Are you eating at all?

Even if you’re not eating, it’s risky to stop all insulin - especially when you’ve had DKA in the past. What’s your blood sugar like? Have you stopped your basal insulin too?

Hi Inka..... Still to be investigated I guess. I am eating ( and those who know me will attest .... like a horse.... although not as bad as i used to be).

My thought proess is that if I am so low why would I take insulin (and make it lower)? Am i wrong?

I've missed everything so far (rapid and long term )

Thanks for the reply.

Nick

 

[RIFRAF]

Hi and welcome to the forum @RIFRAF
Reading what you’ve written and thinking a little out of the box.....When your libre says 3.0 etc are you checking with a finger prick?

Occasionally you can get a dud sensor which claims you’re lower than you are (Abbott’s do replace them generally speaking). Maybe you’re feeling ill because you are higher than you think and not taking your insulin?

I know a lot of things like illness can cause levels to be lower for a period of time etc but it may just be worth checking if you haven’t already.

I had a dud sensor 3 weeks ago claiming I was 3.3 and I was 6.5 3.9 and I was 7.8.
As @rebrascora says what insulin’s do you usually take.
Hope you feel better soon

Hi Bexlee, thanks for the response. Chuffed I've had a varied set of questions coming back that I can explore.

I'm not following up with finger prick (although I did a ketome just to make sure that wasnt raised - 0.1)

I get my sensors through the NHS so if broken I just re-order f.o.c.

You're right..... I could be higher and not aware of it....... one to go off and test (hate the goddam finger pricks !!)

I'll let you know......thanks.

edit - Libre 5.8 - blood 7.0 however I'm led to believe the sensor is about half an hour behind blood as it in the sub ??? layer not the blood stream. Out of curiosity will re-take sensor in half an hour to see. It so high courtesy of a piece of cake !!

 

[Bexlee]

Hi Bexlee, thanks for the response. Chuffed I've had a varied set of questions coming back that I can explore.

I'm not following up with finger prick (although I did a ketome just to make sure that wasnt raised - 0.1)

I get my sensors through the NHS so if broken I just re-order f.o.c.

You're right..... I could be higher and not aware of it....... one to go off and test (hate the goddam finger pricks !!)

I'll let you know......thanks.

edit - Libre 5.8 - blood 7.0 however I'm led to believe the sensor is about half an hour behind blood as it in the sub ??? layer not the blood stream. Out of curiosity will re-take sensor in half an hour to see. It so high courtesy of a piece of cake !!

They do run slightly different times so to speak so can be slightly different. Occasionally the sensor can be consistently a unit out. I normally do finger prick test once a day before linch just to check or if I feel different to what sensor is saying.

One other things when you sleep depending exactly where sensor is on back of arm and how you sleep you can sometimes squash it so it gives a false lower reading over night that - another finger prick to check I’m afraid!

Its good to be able to see the trends.

 

[Lizzzie]

Hello! and Wow! That's a lot in a short space of time. Just wanted to say that I hear you, and it's worth pointing out (even though you're a lot older and probably wiser than me, so may have figured it out for yourself) that the problems you're having aren't because you're inadequate. It's a difficult disease to manage and some medical teams (not all, luckily) can explain it in such a way that it feels as though it *should* be easy *just* to keep things in the middle, where as in real life it's perfectly normal to get it a little bit wrong. The more you test, the more that you catch it. It's also perfectly normal to get fed up with it occasionally and react by not wanting to take insulin or or test or being on the generous side because it 'won't' go down, and then going hypo. Recognizing these patterns in yourself and not repeating them, is easy to say on a forum, but a good thing to work on. Do you write all your readings down at the time of the day, so that you can work out where any problems are happening? (If you are in a position to throw money at the problem, CGMs are amazing and alarm nicely when you're about to go out of range, but the NHS unfortunately have to have tough criteria for giving them out. Still; it's good if you know that such technology exists). When I was on pens, I would always respond to a hypo that wasn't after a meal, by putting the background dose down a little. Finally; well done, keep, going, please keep us posted.

 

[Docb]

@Lizzzie. @RIFRAF is very new to things so it might be helpful to expand on CGM and how the Libre he is using fits into the picture. Won't try myself because as a T2 my understanding of this area is a bit sketchy.

@RIFRAF, lots to figure out in a short time but I get a sense you are beginning to get there. Keep asking questions!

 

[Inka]

Hi Inka..... Still to be investigated I guess. I am eating ( and those who know me will attest .... like a horse.... although not as bad as i used to be).

My thought proess is that if I am so low why would I take insulin (and make it lower)? Am i wrong?

I've missed everything so far (rapid and long term )

Thanks for the reply.

Nick

Hi again - the insulin doses you gave above aren’t low doses. I was imagining you were on tiny doses of insulin. (Not that there’s any right amount to take. Everyone needs what they need.) But - looking at your doses, if I were you I’d have been thinking about reducing rather than stopping insulin. You say you were told to reduce it by a couple of units but you could ask about a larger reduction.

Perhaps you still have some of your own insulin (the honeymoon period) and perhaps your bowel problem is affecting your food absorption? So both combining to make you low.

Do you carb count for meals? That’s crucial.

I’d fingerprick rather than use the Libre for important blood test times. I’d also be speaking to my team to ok a larger reduction in basal (as you’re going low overnight) and reductions in your bolus insulin too. Some people who’re going through the honeymoon period only need basal insulin. Some need tiny amounts of both.

I get what you’re saying about not wanting to inject and go hypo but stopping insulin altogether is potentially risky. You really do need to speak to your DSN and get further input.

 

[Drummer]

Although I don't need to inject insulin I read about it - when I can't sleep - and I am wondering if you are experiencing variation in your own insulin production so all the calculations of a few days earlier are off as your pancreas recovers and fails again.
If so, it must feel like juggling a whole lot of different items at one time. I can only encourage you to test and adjust, and follow your most recent results rather than thinking back to a few days ago when you might have been in a different situation.
With Type one there seems to be no rule, nor even set of rules to follow - other than 'just because you needed this much that time it doesn't mean you need that much this time' - but please don't think that you are not getting it right, just keep checking and adjusting for the readings you are getting.
I hope that you soon begin to see some steadier, more normal levels.

 

[Ian T]

Hi RIFRAF - I am male and was also diagnosed at age 50 so we are in the same boat! I can say that this will all get better, but it does take time and the expert advice of your Diabetes Specialist Nurse or Diabetes Consultant. Your GP may or may not be much help, depending on the level of knowledge they have specifically about Diabetes - they have to know about such a wide range of things and so are often spread pretty thin.

At the moment you are taking fixed amounts of insulin with each meal but you will need to move over time to matching the amount of insulin you take to what you are eating - more specifically the amount of carbohydrate (not just sugars) in what you are eating. When I was first diagnosed I knew zero about carbs and food science (much to my wife's amazement) but once it was explained to me what was in my food and I learned how to calculate and understand what I was eating then I was able to take control. Your DSN should be able to set you off on the right path for this so worth getting to talk to them as soon as you can.

Don't be too hard on yourself in the meantime, concentrate first on being safe and then refine things later. Reading your notes above, BG of 3.0 is certainly going to make you feel pretty miserable but scores of 9.0 aren't catastrophic - when you had DKA I suspect they were very much higher than that. If you have a nose around some of the other discussions on the forum you'll see that it is not uncommon at all to have BG levels that yoyo around or to have days when it all seems to go wrong - it's just part of getting to know the condition and how your body reacts to things such as exercise, stress, food types etc. The fact that you already have Libre is fantastic as that gives great insight as to what is going on.

Good luck!

 

[rebrascora]

I can see why you would stop taking the insulin rather than reducing it with those levels and having to eat cake even to maintain them without insulin and as @Inca says, you are not exactly on small doses. I also think there may be some sort of inflammatory digestive issue going on which is affecting your ability to absorb nutrients (a bad DKA could have damaged your gut) and it might be worth you exploring dietary changes in the meantime if there is no sign of an appointment for that.
At the same time, if you are unable to absorb most of the glucose from carbs, your pancreas has probably been getting a bit of a holiday and particularly as you are likely in the honeymoon phase, it may now be managing to throw out enough insulin to cover the lower amount of glucose which is being absorbed from your food but this situation could end at any moment and your BG readings could suddenly soar, so watch out for that happening and have your NovoRapid to hand at all times to deal with it.

I also think your Libre might be reading slightly low and finger pricking when it is showing 3 is something you should be doing as you may be in the normal range above 3.9, in which case you are feeding in carbs unnecessarily and perhaps putting more pressure on your gut. Finger prick checks should be done when the Libre shows you below 4 or too high or when the reading doesn't correspond to how you feel or is not in the region you expect it to be.
It is good to know you have a means of testing for ketones. This only needs to be done when your BG is above 14.

In your position I would have done the same as you and stopped the insulin, but you need to be in touch with your team and tell them exactly what you are doing and the problems you are having and what your current readings are 24 hours after stopping all insulin despite eating cake and biscuits so they are more in the picture. You are right that decreasing by just 2 units is ridiculous and potentially dangerous especially if you are having problems absorbing glucose from food and please do get some Dextrose tablets/chews or Glucogel which should have a much quicker and safer effect than eating cake. The treatment is 3 Dextrose tablets (I assume chews are the same) and chew them well before swallowing because absorption occurs in the mouth first and foremost.

 

[Ditto]

Good grief it's very worrying when the medicos seem to often be getting things wrong.

 

[Inka]

Hi again - I just re-read your initial post and noticed you said you spike up to 12 then drop to 3 without insulin. That’s interesting.

I had that for months after diagnosis. I’d spike to a similar number to you then, without insulin, come down to the 3s. I only experimented without the insulin a few times. My consultant said it was part of the honeymoon - an erratic pancreas spurting out insulin too late and too much.

I’m still really concerned about you stopping insulin entirely, especially when you were on a reasonable dose : / Your last basal injection will still be working a little, but, over the next few days your blood sugar could rise. The thing that persuaded me to take my insulin (at reduced doses) was that it helps preserve your remaining beta cells for longer. My basal was reduced to 2 units and my bolus (meal) insulin was reduced too, but it was never entirely stopped.

Do let us know what you’re team says and how you’re doing.

 

[Madeline]

Hi again - I just re-read your initial post and noticed you said you spike up to 12 then drop to 3 without insulin. That’s interesting.

I had that for months after diagnosis. I’d spike to a similar number to you then, without insulin, come down to the 3s. I only experimented without the insulin a few times. My consultant said it was part of the honeymoon - an erratic pancreas spurting out insulin too late and too much.

I’m still really concerned about you stopping insulin entirely, especially when you were on a reasonable dose : / Your last basal injection will still be working a little, but, over the next few days your blood sugar could rise. The thing that persuaded me to take my insulin (at reduced doses) was that it helps preserve your remaining beta cells for longer. My basal was reduced to 2 units and my bolus (meal) insulin was reduced too, but it was never entirely stopped.

Do let us know what you’re team says and how you’re doing.

Thank you Inka, that seems to completely cover yesterday’s bizarre day when I struggled to keep mine up and had to ditch the evening dose and snack. Back to normal now.
@RIFRAF it is very unsettling when you can’t rely on your own body to at least vaguely stick to the rules. I do second fingerpricking, yesterday I dusted off my old stabber kit and tried that to see if my meter was playing up - it wasn’t, the results were similar enough to satisfy me of that, but I did get enough variation to see that one would read lower than the other if I used a different hand, or the tests were even 5 minutes apart. So I’d get a 3.7 on one hand and a 4.2 on the other. Both probably correct but it just shows the margin of error plus fluctuations.

 

[SB2015]

I get my sensors through the NHS so if broken I just re-order f.o.c.

Hi RifRaf

Welcome to the forum. Sorry you have been problems with your levels and matching these to your Libre results. I hope that you have been able to follow up on the suggestions above and have some success. If in doubt I would definitely recommend contacting your team again.

A couple of thoughts from your posts

• I also get my Libre sensors on NHS. However if I have a faulty one I still contact Abbott who send a replacement and take the faulty one to check for issues with it. This helps them and also ensures that The NHS aren’t covering the cost of faulty sensors.
• With adjustments to insulin doses, have you got a half unit pen. I found that made a huge difference to me in managing my levels when on injections. When I still found I wanted finer adjustments to match what I needed, especially overnight I switched to a pump.

Let us know how you get on.

 

[grovesy]

I have just remembered they ask if you get them on prescription or not.

 

[rebrascora]

My Libre consistently reads lower than finger prick at low levels. I did wonder if it is programmed to do so to help protect people. For instance I woke this morning at 5.45am on a Libre reading of 2.5 and a steady decline on my Libre graph but my finger prick showed that I was 3.6... obviously still hypo and needing treatment but not nearly as bad as a 2.5 and certainly didn't feel like a 2.5. This is a regular discrepancy at low levels. Interestingly, if I am mid 5s and steady the Libre and finger prick are pretty similar and if I get up towards 10 the Libre tends to be a little bit higher, but at low levels there seems to be the biggest discrepancy of usually about 1mmol.