Rather fed up

[Splats13]

Pretty much just a rant but if anyone has any suggestions as to what to do next then I'd gratefully receive them....

I've had Type 1 diabetes for 25 years (diagnosed as a small child) and thanks to my mum taking it all on board right from the start I feel i've had a fairly easy ride with it - a few big hypo's as a teen but other than that nothing much to speak of, good HbA1c and (as yet!) no real complications.

But here's the thing, in the last 2 months I feel like my life has been shaken up and tipped upside down 😡

I recently requested to change my hospital as we'd moved house and this one is nearer work and so easier to fit around other commitments. Now I can't work out if either my old consultant just fobbed me off telling me everything was ok (I think he was pleased someone had turned up that day!) or whether the new hospital are just a whole lot more proactive with their patients.
Basically they have concerns about my late night hypos which is rightly so really and were concerned about my insulin intakes as a whole as I had a number of low readings. I was, and I admit I was wrong, doing a lot of rough approximation re carbs and so they have made various changes to the Lantus and Novorapid dosings I take.

Since they made the changes my results have gone completely off the rails. High sugars pretty much all the time, only dropping after maybe 4 hours after eating but even then to not below 10 really. Also I appear to be still having night time hypos (waking up with sky high readings, 13 - 18 appears to be the norm) but I've now lost my warning signs - I used to wake up really rather sweaty but now i sleep through and then find I'm met with these figures in the morning. I'm therefore eating virtually nothing all day - I'm beginning to not want to eat for fear of another high - but that leaves me absolutely ravenous.

I complained to the DN a while ago about the highs (I prefer and can deal with lows better than highs) and so she split my Lantus (part am/part pm) asked me to go onto CGM for a week to see if they can work it out. I'm due for an appointment next week to find out what we do now but if they can't sort it out I'm tempted to tell them to stuff it and I'll go back to how I was before.

I'm just pretty stressed about the whole thing now. I feel like utter rubbish all day and feel so blooming low. If I spent 25 years getting it relatively right then why the heck did they have to mess with it??

 

[Copepod]

Welcome to the forum, Splats13.

As well as tweaking your insulin doses, did any staff at your new hospital suggest some diabetes education / training to help you with carbohydrate estimating and dose adjusting? The best known scheme is called DAFNE (Dose Adjustment For Normal Eating). It's not available everywhere. However, there is an online course available at http://www.bdec-e-learning.com/ Free to enroll yourself. Ratios of carbohydrate to insulin are not constant throughout the day for most people - most need relatively more insulin earlier in the day.

However, it always takes a while to get used to a new regime, so perhaps worth sticking with it a bit longer? Or asking about alternative insulins or even an insulin pump?

 

[AlisonM]

I expect they're concerned because hypos can be more dangerous in some ways than highs, especially when they happen at night when you may not wake for them. I would suggest the same thing for you as I did for Northerner earlier. Set your alarm and test once during the night to see what's going on.

It does sound as though you need to increase your insulin, but perhaps also to take a small snack before bed. It may be your basal needs adjusting, as well as more careful carb counting.

It's as much about finding out what works best for you and educating your medical team as well as yourself. Having said that, I'm on the slow road to T1 and not on a 'full' insulin regime yet. No doubt some of those who are will have better ideas.

 

[Redkite]

Hi and welcome to the forum 🙂

It sounds like your clinic team have tried to make too many changes at once so you now can't see the wood for the trees! If my son had been in your situation (various hypos throughout the day, and dodgy carb counts), I would have started with just two things - a small reduction in the Lantus to try and eliminate the hypos, and a strict tightening up of the carb counting! I would NOT have touched the bolus ratios for meals and snacks until after a good few days of testing. Do you check your levels during the night at all? I recommend you set an alarm occasionally at 2 or 3am - you say you are waking really high and are assuming this is due to a hypo, but it could well be that your levels are high all night following these changes.

I can only advise on what I would do in your place, which is not to just go back to how it was before. Do a strict schedule of BG tests for a few days (waking BG before breakfast, 2 hours after breakfast, before lunch, 2 hours after lunch, before tea, 2 hours after tea, bedtime, and one during the night if you can). Keep a diary of BGs, food eaten (with carb counts), insulin taken, and any exercise which may have had an effect. Then you will be armed with the information you need to see whether the bolus ratios need to be increased or the basal insulin. If your BGs before and 2 hours after a meal are within 2 mmol of each other, your bolus ratios are ok. If they then rise before the next meal, you have insufficient basal insulin. Don't be tempted to change everything in one go - make a change and then see what the next couple of days bring in terms of test results. You'll get there 🙂

 

[Hanmillmum]

I'd be rather frustrated too! It's PITA when everything goes awry.

It may be an idea to do some proper basal testing before making any vast changes - have you seen the sticky in the pumping section as it applies to MDI too.

Hope you get some stability soon 🙂

 

[Splats13]

Hi All,

Thanks for your comments.

I'm pretty good at carb counting - brought up from the start on the old exchanges scheme (if anyone remembers that one?) - but my life has been so chaotic recently that I've got slack and slipped into bad habits. Now I'm having such issues I'm back doing it properly but it's hard to tell if it's right cos there's so much else wrong at the mo. The clinic suggested their own carb programme but it involves 3 days off work - which I can't really afford to take - so I might look at the alternative you suggest Copepod as that might be a bit easier to do.

I have always been obsessive re blood testing, I like to know where I'm up to all the time but this has escalated since all this debarcle started. I probably test a minimum of 10-15 times per day now and certainly pre meal and 2 hours post meal. It seems that something certainly isn't right with the levels as I can get 16/17s 2 hours after eating. Equally what is on the face of it totally carb free also seems to have an effect too. Makes me think that it's part dose part medication issue - I'll have to discuss this with the DN on Monday, see if there's an alternative.

I always test if I wake in the night - usually early hours of morning and then 4ish when other half goes to work. I'd love to be able to set an alarm but I don't think it'll go down well with the other half - his anti social hours mean he gets limited sleep and so he won't appreciate that wake up call for no reason. Unless anyone else can think of a way round this I think it's a non starter?
If the value is less than 5 I eat something to counteract a low and this works but obviously I don't see every low test result.
As you say though it could be I'm high right through but i'm not sure this is the case. The other night it was 8 before bed, 8 during night when I tested and then 18 first thing - that looks to me as though it's hit a low but again no symptoms of this as I used to get.

Alison - thanks for your suggestion re snack before bed. Unfortunately I don't know this would have much use as more often than not, because of my mad life, I eat pretty close to going to bed. I'm trying to rectify this but it's not always possible.

Copepod and Redkite - I wish I could stick with it a bit longer. It's been 2 months now since it started and so I'd have thought i'd have got it sorted by now. Instead it just seems to be getting progressively worse. I've gone from being in control, happy and positive about life with diabetes to resenting it, feeling really low and demoralised.

Fingers crossed I get my copy of the CGM results pre visit on Monday so I can take a look and go armed with notes, suggestions and my up to date recordings.

 

[Redkite]

The CGM will show you exactly what's going on at night, so that will be very helpful! I very much doubt that you are having hypos between 4am when you are 8 and getting up on 18 - sounds more like a complete lack of basal insulin, but the CGM will reveal all! I certainly don't advocate sticking with your current settings! But I don't recommend going back to the previous either - start from where you're at and make gradual changes based on your BG results, changing only one thing at a time. Good luck! 🙂

 

[Splats13]

Thanks Redkite. As much as the CGM was a pain it opened my eyes to what was going on to a degree (hence the food intake reduction) but I'm hopeful that it will shed some light on what's really going on. Fingers crossed we can get something sorted so I don't feel so rubbish any more.

I totally agree though that making big changes would be a silly thing. Goodness only knows why the hospital thought it sensible to mess with everything at once. I'll be sure to put my foot down on this one when I see the DN on Monday - I'd rather go back more often and make small changes than a huge change and have such a horrible time.

 

[Northerner]

Hi Splats13, welcome to the forum 🙂 I wonder if part of the problem with the post-meal highs is due to the timing of your injections? I found a while or go that novorapid (which I use) isn't really very 'rapid' at all. Depending on the time of day it can take up to 40 minutes to start peaking for me, so before when I used to inject immediately prior to eating I was getting the doses right but the peak of the insulin was after the peak of the food. Adjusting the timing (and learning from lots of testing and experiences what those timings ought to be for different food/times of day) made a huge difference to my post-meal readings and I generally remain in single figures at all times, with fewer hypos.

 

[Splats13]

Hi Northerner,

Thanks for your reply. I think I might have seen something about changing of dosing times from you when I was perusing the boards before registering. I thought at the time that might help my situation but I'm yet to try it. Might give it a go over the next few days and see if it has any impact - either way It's giving me some more information for my visit!

I think medication effectiveness changes over time too, this might be part of it. I've never had any problems before - previously it seemed to be acting rather quick really if I'm honest (but that might just be due to above necessary dose) but now it doesn't seem to work at all. Hopefully by medication dosing/timing or product change I can get there.
Just annoys me that for 25 years I thought I was doing ok. Obviously not!

 

[Pumper_Sue]

Hi Splat if you look in the pump forum it will tell you how to basal test. I know it's aimed at pumpers but MDI users can use it as well 🙂 As to the testing at night, simple solution is sleep elsewhere or tell OH to do so.
Your health must come first.
Sort your basal 1st then move on to your carb ratio.
If you had been having a lot of lows then your new team would be concerned esp if you drive.
As Northerner has suggested time your meal bolus so you inject earlier.
From your comments regarding waking up high, personally I would suspect you are not having a night hypo and your blood sugar is just going up in the early hours. Obviously the only way to find out is to test your basals 🙂

Perhaps also invest in the book think like a pancreas also using insulin. Both can be found on amazon 🙂

 

[Splats13]

Thanks for your comment Sue.

Others have suggested the basal testing so I'll give it a go. I'm blooming glad I posted on here now - you lot are full of wisdom!!

I know I could do that but I couldn't stand not to sleep in the same bed. My weird anxiety I guess. Will consider it if I need to but hopeful the CGM will have shown up what's going on so this may not be a necessity.

I'm really grateful that they are taking so much care and caution. Just irritates me a bit that this hasn't been picked up before. Was pretty much told by my old consultant that everything was fine. They tried to make a few changes but never really pursued it for long enough to make sure I was doing it correctly.

I'd not heard of that book so I'll have a look, sounds interesting. Hopefully I'll be able to find some time to read it!

 

[Flutterby]

Hi Splats and welcome

I won't add anything as I think it's already been said, just wanted to say hello and that I sympathise with you. The problem is that our condition never stays static does it, something upsets the apple cart and it all changes. I remember the exchange system and some of the other people on here will do too. I was diagnosed in 1977 and I have to say that the carb counting stood me in good stead, despite the fact that it wasn't as refined as it is now. The other thing is that foods have changed since then so an up to date course or buying the "carbs and cals" book might be of use. All the best anyway.

 

[Splats13]

Thanks Flutterby!
It doesn't stay static at all does it?! Just when you think it's all going ok and BANG the cart gets upset. I'm glad you understand my frustration!

Carb counting has stood me well too. I don't really know anything different if I'm honest. As I said before I just got lazy with it - life changed a lot in the last few years with one thing and another and that got pushed to the bottom of the pile. I hadn't seen a DN in about 10 years until 2 months ago, perhaps if I'd seen one/been offered it before now I wouldn't have got so slack - who knows!

You're right about food changes. The dietician recommended Carbs and Cals and i thought i'd not use that and get one of the old school carb books my parents probably still have stashed at home. I then realised that they would be well out of date - a lot has changed since the 80s! - and so got the carbs and cals app. Whilst it's a great tool it doesn't include everything so I'm now an avid 'carbs in x' 'nutritional info for y' Googler!

Thanks for your kind wishes, I'm sure I'll get there eventually. Just having a bad day and feeling sorry for myself.

 

[Flower]

Hi Splats and welcome

Nothing to add to the suggestions already made just to say that I changed hospital and clinic a few years ago and was also told to make wholesale change to my insulin regime.

It is really difficult when you think you are doing alright to be met with complete upheaval and what feels like criticism of your control. I went from reasonable control to what seemed like chaos. It took me a long time to implement all the changes but bit by bit I started to get better control and improvements in my HbA1c.

I still rely on my old carbohydrate exchange knowledge although I mix and match with Carbs and Cals these days, got to move with the times 😉

I hope things start to settle down for you soon.

 

[Bloden]

Hi there, Splats13. Sorry to hear about your situation. I really sympathise with you, but it sounds like you've had some great advice here. Good luck getting back to normal.😛

 

[Splats13]

Thanks Flower. It's a relief to know im not the only one to have experienced this. Your success makes me feel it will get better in time so thank you!!
Thanks Bloden, i really hope so too. Fingers crossed!!

 

[trophywench]

What you have has a name - it's Carb Creep!!!!

Some of us remember Exchanges well as you say. The famous egg-sized spud that = 10g CHO. Well that average hen's egg turns fgadually into a duck's egg and if you don't realise where you are going suddenly it morfs into an ostrich egg ! Don't say you are lazy - you aren't, at all, cos what you actually are is dead NORMAL mate.

Hypos and rebound highs. Right.

Firstly if you have lost your hypo warning symptoms, this actually means you must be running too low for too long out of any 24 hrs or week or whatever, cos that is why they usually go. The cure is to try and run HIGHER for a month or two till the symptoms come back - and they will. Soooo say you are aiming for your BG to be about 6.0, so when you do a correction dose the calculation actually represents the amount of fast-acting you need to bring that meter reading to 6.0 - well don't - aim for 7.5 and adjust your calculations accordingly. If you usually aim for 7, aim for 8 and so forth.

After a rebound high the old fashioned advice (and I was 22 when I was diagnosed so they taught me not my mother) was DO NOT CORRECT AT THE NEXT MEALTIME. So you have a hypo, you treat it, you do not overtreat it, you go high because you also have a dump of glucose from your liver, it's autonomic, you can do nothing to stop or prevent it, it's inevitable. You come to the next meal, you are high of course. Well just have what insulin you need for the carbs in that meal - and YES! - you must eat. You can't solve this without eating.

Come to next mealtime - OK if you are high, you can correct and you must eat again.

Gradually, all this seesaw business stops. How do I know this? - how do you think I do? LOL (I didn't get the T-shirt for this though .....)

That's really annoying that something that worked over 40 years ago still rottenwell works exactly the same, notwithstanding all the new stuff we've had in between.

Makes me really fed up that does, why haven't they invented something newer!

 

[Splats13]

Thanks Trophywench. Glad to know im normal (of sorts)!!!

Carbs have definitely changed over the years. Times and info change i guess. Im using up to date tools and weighing pretty much everything so i should get back on top of the carb count soon!!

The low symptoms thing is weird. as you say running low figures continually you would expect a reduction in warning signs. I would have anticipated this in my previous regime however i had amazing awareness of hypo onset and could even tell you pretty much what my BG was without testing (obviously i would test to confirm). Since my levels have increased, my hypo signs have decreased but mostly at night. I had a number of overnight hypos as a teen which has left me horrendously anxious about this happening again - hence my concerns. Will have to discuss with DN on Monday to see if i really am having hypos and if so how we get some symptoms back overnight.

as you say its frustrating that guidance hasn't really kept up with condition changes. I work in research so it's got me thinking if there's something that could be done. Is there anything particular you think should updated/changed in practice so it fits more with today's life and conditions?

 

[trophywench]

ROFL - a cure?

If that's too aspirational of me how about

Get the NHS and DUK to admit they are wrong about needing carbs for life itself?

Education for all (patients and medical staff) about testing properly and what patients can do about high BGs before kidneys fail and both legs drop off?

Form a Government that lives in the same world as all the people in the country, instead of on Fantasy island with them?

If they are gonna continue to prescribe mixed insulins, train the prescribers to titrate it properly for each patient, and explain properly to those people how the damn stuff works.

Be more truthful about D all round. It doesn't need to be a progressive disease but it is and if the patient (and therefore his doctor!) doesn't progress at a faster rate than the D and thus stay one step ahead of it, the D will gather speed and sooner or later, will turn round with a snarl and bared teeth and bite the patient in the bum. Never the doctor. Always the patient.

But all that's just truth and common sense coming from a person with a 1966 Grade B Joint Matriculation Board GCE Biology 'O' level who spent her working life in the Insurance Industry whom fate gave Diabetes to.

Not a researcher.

There's nobody would make money out of any of these things. But diabetics might be RICHER.