Type 3c need advice

[Rafferty]

Hello, Its been a long time since I've been on site but recently things have got a bit crazy and I'm hoping someone out there has had similar and can help please... For 4 years I was diagnosed as type 2 on insulin and lots of problems, then saw great D. N. And got correct diagnosis type 3c, change of insulin to Toujeo and apidra, plus libre 1 then 2...
Most days I'm OK and stay within green zone but lately been going into hypo early hours of morning, so reduced Toujeo... Have to take more doses of apidra throughout day but there you go.. Now I'm going into hypo ( alarm doesn't always alarm) told Abbotts who send replacement sensors... But now for where I need help, I hypo, have glucose, then carb, but keep going lower, so repeat... Gradually goes up, slowly, then soars! Up into 11-12 plus... I'm bouncing from one extreme to another,.. This is now happening on a regular basis.. Do i keep reducing Toujeo? Keep adjusting apidra? I tired of being tired... I can got from 6.8 to 3.2 in 15-30 minutes... If you have experienced similar I'd welcome hearing what you done... Many thanks...

 

[rebrascora]

Hi.

I have a couple of thoughts....

1. When you hypo, do you finger prick to test your BG for recovery after 15 mins? Libre lags behind BG by 15 mins (due to it reading interstitial fluid rather than blood) so if you are only using Libre to retest, it will often show you have gone lower still and result in you perhaps taking another hypo treatment, whereas if you do a finger prick BG 15 mins after your first hypo treatment it will usually show you are coming up. You should always do a finger prick BG to check that hypo treatment has worked rather than rely on Libre, otherwise you will end up having 2 or more hypo treatments which may not be necessary and end up too high.
I am sure this is mentioned in the LIbre training but it seems that some people are being prescribed Libre without doing the appropriate training/online modules, so don't understand how it works and end up yoyoing.
Apologies if this is not the case and you are taking a finger prick BG reading and still going low after hypo treatment.

2. It sounds like Toujeo may no longer be suiting your basal needs. Each basal insulin has a slightly different profile and most of us need different amounts of basal insulin at different times of day and this can change over time, so whilst Toujeo may have suited you when you were first prescribed it, the fact that you are now either hypo through the night or too high and needing corrections through the day, indicates that it is no longer a good fit for you. Obviously, reducing the dose so that you don't hypo at night and doing corrections through the day as you are, is the best way to cope with it but a basal change to split dose Levemir would enable you to adjust your daytime and night time doses independently of each other to get a better balance. You would need to discuss this option with your DSN/consultant.

 

[Rafferty]

Thank you for the informative reply.. Yes, I finger prick, only slight difference between that and libre.. I was previously on lantus and got changed to Toujeo in january... I will speak to my DN, I appreciate your help.. Thank you..

 

[rebrascora]

Out of curiosity, was there a reason why they changed you to Toujeo? Ie were you having difficulties with Lantus in some way?

 

[Rafferty]

They changed lantus because it was doing what Toujeo seems to be doing now....
I have multi Co - morbidities which impact on my diabetes... Thank you for replying, it helps to know someone out there is helping me...

 

[rebrascora]

Not surprising really as Lantus and Toujeo are both insulin Glargine...essentially the same stuff. I use Levemir and I take a dose as soon as I wake up and another at bedtime. I need much more insulin during the day than at night so the split is no where near 50/50. I currently inject 18 units in the morning and just 6 at night but if I have done a lot of exercise I usually cut the evening dose a bit as that seems to be more affected by exercise/activity and the doses need adjusting with changes in the season, ambient temperature and a whole host of other reasons. but it is so flexible, it allows you to make those changes as need be.
You should also ask to go on an education course like DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is. These courses are so much more than carb counting courses and teach you how to recognize when a basal adjustment needs to be made and gives you the knowledge and confidence to make those changes and assess them as well as keeping yourself safe with insulin in a whole variety of situations. The other good thing about the course is that you spend 5 whole days with really knowledgeable Diabetes Specialist Nurses who look at your daily readings and can pick up on things that are causing problems and suggest solutions and even prescribe to effect those changes. It is also an invaluable opportunity to spend 5 days in the company of other insulin dependent diabetics which can help you to feel more normal and to share each other's experiences and learn from them. I really can't fully explain the huge benefit of these courses and I believe they are starting up again in a face to face format... which I would highly recommend over an online version., although I am sure the latter is helpful if there is no in person option available.

As a Type 3c you should have access to the same resources as a Type 1 so don't allow anyone to fob you off by saying that you don't qualify for the course.

 

[Rafferty]

Not surprising really as Lantus and Toujeo are both insulin Glargine...essentially the same stuff. I use Levemir and I take a dose as soon as I wake up and another at bedtime. I need much more insulin during the day than at night so the split is no where near 50/50. I currently inject 18 units in the morning and just 6 at night but if I have done a lot of exercise I usually cut the evening dose a bit as that seems to be more affected by exercise/activity and the doses need adjusting with changes in the season, ambient temperature and a whole host of other reasons. but it is so flexible, it allows you to make those changes as need be.
You should also ask to go on an education course like DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is. These courses are so much more than carb counting courses and teach you how to recognize when a basal adjustment needs to be made and gives you the knowledge and confidence to make those changes and assess them as well as keeping yourself safe with insulin in a whole variety of situations. The other good thing about the course is that you spend 5 whole days with really knowledgeable Diabetes Specialist Nurses who look at your daily readings and can pick up on things that are causing problems and suggest solutions and even prescribe to effect those changes. It is also an invaluable opportunity to spend 5 days in the company of other insulin dependent diabetics which can help you to feel more normal and to share each other's experiences and learn from them. I really can't fully explain the huge benefit of these courses and I believe they are starting up again in a face to face format... which I would highly recommend over an online version., although I am sure the latter is helpful if there is no in person option available.

As a Type 3c you should have access to the same resources as a Type 1 so don't allow anyone to fob you off by saying that you don't qualify for the course.

Thank you sooooo very much.. You have explained and offered solutions that I did not know of.. I've had particularly bad hypos this morning that lasted ages, and although I'm in 10's now ( jelly beans lucozade porridge toast)!!! I feel wiped out.... Not sure if I should have eaten some lunch,? you are correct all I've been taught is carb count, I'm being tested for "gastroparesis"? was at gastro 2 weeks ago and await letter... I generally bumble along hoping I'm doing right, but can't seem to get off this hamster wheel at moment, high, crashing lows... Makes sense what and how you take yours via split dose, that has never been mentioned to me... Something else to ask DN, ( which incidentally has a lot of changes going on, hence delay from point of contact) then I remembered initially how I used to use this site... You are a wealth of information, thank you for your kindness...

 

[Pumper_Sue]

Hello, Its been a long time since I've been on site but recently things have got a bit crazy and I'm hoping someone out there has had similar and can help please... For 4 years I was diagnosed as type 2 on insulin and lots of problems, then saw great D. N. And got correct diagnosis type 3c, change of insulin to Toujeo and apidra, plus libre 1 then 2...
Most days I'm OK and stay within green zone but lately been going into hypo early hours of morning, so reduced Toujeo... Have to take more doses of apidra throughout day but there you go.. Now I'm going into hypo ( alarm doesn't always alarm) told Abbotts who send replacement sensors... But now for where I need help, I hypo, have glucose, then carb, but keep going lower, so repeat... Gradually goes up, slowly, then soars! Up into 11-12 plus... I'm bouncing from one extreme to another,.. This is now happening on a regular basis.. Do i keep reducing Toujeo? Keep adjusting apidra? I tired of being tired... I can got from 6.8 to 3.2 in 15-30 minutes... If you have experienced similar I'd welcome hearing what you done... Many thanks...

Hello again,
having just read some of your previous posts a few questions if I may 🙂

Are you still taking steroids, are you taking Creon and what time are you going hypo in relation to your bolus insulin?

 

[Rafferty]

Hello again,
having just read some of your previous posts a few questions if I may 🙂

Are you still taking steroids, are you taking Creon and what time are you going hypo in relation to your bolus insulin?

Yes, I'm permanently on steroids daily as I not only need them for my lung condition ( non smoker all my life) but my adrenals have packed up so I need a base line.. I live by creon!! I can only eat little and often, no plates of food, on my last CT scan there is only the head of pancreas left...
Sorry on my ignorance, is bolus the Toujeo? Long acting one? If so I take it approx 8-8.30am, I go to bed in Amber zone just over 10 ( cleared by DN as OK to do).. Hypo happens around 6am, but today I awoke on 4.1, for me anything 4.5 gives me hypo symptoms, got showered, came down for breakfast went to 6.1 took 29 Toujeo (decrease from usual 31) and 2 apidra for porridge and soy milk... Alarm started says going low 3.9.. Kept going with warning red low glucose 3.2 so I ate 5 jelly beans ate slice toast, but then it started, ears ringing, vision squiggley, managed to sit down, (trying not to panic) tested finger prick 3.4...15 minutes later libre 3.4 finger prick 3.6, 15 minutes more, libre 3.8 finger prick 4.1... You'll see I've been given some good advice which I hope to ask DN.. Thanks for questions hope my answer helps...

 

[rebrascora]

Bolus is your Apidra.
Is it before or after your breakfast that you go hypo? It sounds like it might be a timing issue with the Apidra hitting your blood stream before the glucose from the porridge which can be quite slow to digest in some people (low GI). How long after injecting the Apidra do you eat?

 

[Rafferty]

Bolus is your Apidra.
Is it before or after your breakfast that you go hypo? It sounds like it might be a timing issue with the Apidra hitting your blood stream before the glucose from the porridge which can be quite slow to digest in some people (low GI). How long after injecting the Apidra do you eat?

Oops.. I take apidra at same time as Toujeo around 8-8.30am. I then have to take creon plus multitude of other medications etc then I eat porridge, so about 30 minutes plus afterwards.. Incidentally it was my gastro who asked me to have porridge at breakfast..

 

[rebrascora]

The porridge might then slow the hypo treatments from acting. Did you chew the jelly beans thoroughly as that can help to absorb the glucose from them more quickly.... glucose absorption actually starts to occur in the mouth so the better you chew them the quicker they will act, but I would probably switch to a liquid hypo treatment like orange juice of full sugar cola to have a quicker impact or ask glucogel. It certainly seems like your hypo treatment is not working quickly enough rather than that you need more.

 

[Rafferty]

I've never been told a bout time sensitive.. I'm learning so much!

 

[Pumper_Sue]

Ok,
so base line would be 25mg hydrocortisone or about 6mg prednisolone. I have Addison's plus now taking Creon 🙂

Bolus is what you take for meals 🙂

My personal view is you are on far to much background insulin (Toujeo) The easiest way to check is by doing a basal test, look in pump forum for how to perform a basal test.
I would also be interested to know how much steroid you are actually taking as this could also be a problem if not taking enough.

 

[Rafferty]

The porridge might then slow the hypo treatments from acting. Did you chew the jelly beans thoroughly as that can help to absorb the glucose from them more quickly.... glucose absorption actually starts to occur in the mouth so the better you chew them the quicker they will act, but I would probably switch to a liquid hypo treatment like orange juice of full sugar cola to have a quicker impact or ask glucogel. It certainly seems like your hypo treatment is not working quickly enough rather than that you need more.

I've never been told any of this!!! When I was in hospital recently ( not for diabetes) they gave me something called lift, it was a drink... Would lucozade original work? I didn't know that about chewing jelly beans...
If I may ask a question, my level is still high, why does hypo make you feel rubbish for soooo long afterwards... I've literally struggled to stand up today...

 

[rebrascora]

I would say that 30 mins is far too long to wait between injecting the Apidra and eating your porridge. The Apidra insulin is hitting your blood stream and taking you low before the porridge is digesting and releasing glucose. They usually suggest injecting 15-20 mins before eating and some of us need much longer than that and others less but in your case with taking the creon and other medication that may slow your digestive system down a bit or your digestive system is just naturally slower and you might be best starting with injecting the Apidra just 5 mins before you eat.

 

[Rafferty]

Ok,
so base line would be 25mg hydrocortisone or about 6mg prednisolone. I have Addison's plus now taking Creon 🙂

Bolus is what you take for meals 🙂

My personal view is you are on far to much background insulin (Toujeo) The easiest way to check is by doing a basal test, look in pump forum for how to perform a basal test.
I would also be interested to know how much steroid you are actually taking as this could also be a problem if not taking enough.

My prednisolone is 15mg am any lower and I headed towards crisis, but in a month if my other conditions flare up it raises to 30mg 7 days with titrate down to baseline each 3rd day by 5mg..
Ill take a look at how to do a basal check... I used to be on 48 Toujeo am and been decreasing as needed.. I recently went down to 27 but my levels shot to in the 20's... D N did mention something last month about "brittle diabetes" but not heard back as yet...

 

[Rafferty]

I would say that 30 mins is far too long to wait between injecting the Apidra and eating your porridge. The Apidra insulin is hitting your blood stream and taking you low before the porridge is digesting and releasing glucose. They usually suggest injecting 15-20 mins before eating and some of us need much longer than that and others less but in your case with taking the creon and other medication that may slow your digestive system down a bit or your digestive system is just naturally slower and you might be best starting with injecting the Apidra just 5 mins before you eat.

Thank you, I will try that from tomorrow morning, is it the same with other meals of the day? Take 15/20 minutes beforehand please?

 

[rebrascora]

It depends on the severity of the hypo and the fact that you are probably over treating it due to the timing and going high afterwards, so the combination of dropping rapidly and then rising sharply to a higher that ideal level is likely what makes you feel rough.
You really could do with an education course but you can pick up a lot of info here on the forum.
Balancing insulin with carbs is a lot more than carb counting and calculating insulin dose. Timing of the dose and then when you eat (referred to as pre-bolusing or pre-bolus timing) is almost equally important. If you inject too far in advance the insulin will drop your BG levels before the glucose from the food reaches your blood stream. If you don't inject soon enough, your levels will spike quite high and then come rattling back down but you are much less likely to hypo in that second situation so it is most certainly preferable, which is why I suggest you inject your Apidra just 5 mins before you eat your porridge and see how you manage with that. It might even be that you need to inject just as you start to eat or even after eating, depending on the slowness of your digestion.

 

[Rafferty]

Thank you, I will try that from tomorrow morning, is it the same with other meals of the day? Take 15/20 minutes beforehand please?

Today is first time I've gone low after eating... Would you have suggestion on how at bed say I'm 10.6 but find between say 3-6 am I've gone into red zone... And if alarm hasn't sounded and I've slept through it, had shower and its raised itself should I just take Toujeo and apidra breakfast as normal or add anything food wise... I am pretty clueless and am so grateful for your replies...