Morning lovely people. I didn’t want to hijack anothers post I was reading so started my own. It bothering me a bit, the amount of negativity towards tresiba, can anybody on it, or who’s been on it tell me what the main issues are please. My consultant has written to my doctors requesting I’m started on this. Thanks in advance x
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- Thread starter EmmaL76
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Kaylz
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- Type 1
Tresiba is a tricky one to deal with as it isn't flexible like other basals with dose adjustments taking at least 3 days to have any effect, meaning it's not easy to adjust if unwell or one day you do more exercise than normal, I counteract extra activity by reducing bolus doses though, also as it's once a day if your basal needs vary a lot it isn't easy to manage at times, I need less basal overnight than I do throughout the day but obviously can't split or anything so I just top up with biscuits before bed, not the best solution seen as I can often get away with 50-60g carbs but I don't want to change basal at the moment with everything else I have going on I wouldn't be able to give it full attention etc xx
Thanks kaylz, hope your doing ok?
See I don’t get this now because he said that due to my unique beta cell dysfunction (whatever that means) he said he would ideally like me to go on a pump, but in the likely event that doesn’t happen (consultant isn’t from round my way so can only make suggestions) he wants me on tresiba which sounds like to me it’s far less adaptable when my needs vary quite a bit? I just want something that works, nice and simple like me 🙄
See I don’t get this now because he said that due to my unique beta cell dysfunction (whatever that means) he said he would ideally like me to go on a pump, but in the likely event that doesn’t happen (consultant isn’t from round my way so can only make suggestions) he wants me on tresiba which sounds like to me it’s far less adaptable when my needs vary quite a bit? I just want something that works, nice and simple like me 🙄
rebrascora
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@Kaylz gave a great explanation!
The only thing I would add is that Tresiba trickles a very even amount of basal insulin into your system day and night.... it has what is called a very flat line profile. This sounds great in theory but our bodies don't always need exactly the same amount of basal insulin throughout the day and night. The liver often outputs more glucose in the morning as we know (DP or FOTF) for many people and often hardly releases any in the very depths of sleep, so that steady insulin from the Tresiba can take you low because you don't need it then.... hence raising your BG higher than necessary before bed in order to prevent a hypo. It also is very long acting.... up to 36 hours so if you reduce or increase your dose, it takes a long time to show the full effect of that change. A bit like an oil tanker trying to slow down or change course. To me it's just numb!
My Levemir allows me to adjust the daytime dose separate of the night time dose and I can reduce the night time dose if I have been very active that day to prevent me dropping low through the night or as Kaylz say, if you are ill and need to increase it, it is pretty well an instant result for the 12+ hours following that increase. The only time I can see Tresiba being really helpful is if your basal needs are pretty steady day and night and you have a very regular routine in your life and perhaps if you have a lot of insulin resistance and therefore need high doses of insulin.
The only thing I would add is that Tresiba trickles a very even amount of basal insulin into your system day and night.... it has what is called a very flat line profile. This sounds great in theory but our bodies don't always need exactly the same amount of basal insulin throughout the day and night. The liver often outputs more glucose in the morning as we know (DP or FOTF) for many people and often hardly releases any in the very depths of sleep, so that steady insulin from the Tresiba can take you low because you don't need it then.... hence raising your BG higher than necessary before bed in order to prevent a hypo. It also is very long acting.... up to 36 hours so if you reduce or increase your dose, it takes a long time to show the full effect of that change. A bit like an oil tanker trying to slow down or change course. To me it's just numb!
My Levemir allows me to adjust the daytime dose separate of the night time dose and I can reduce the night time dose if I have been very active that day to prevent me dropping low through the night or as Kaylz say, if you are ill and need to increase it, it is pretty well an instant result for the 12+ hours following that increase. The only time I can see Tresiba being really helpful is if your basal needs are pretty steady day and night and you have a very regular routine in your life and perhaps if you have a lot of insulin resistance and therefore need high doses of insulin.
rebrascora
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Many consultants seem to think that Tresiba is the bees knees, when it practice it isn't, unless you like eating lots of biscuits at bedtime.
Kaylz
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- Type 1
To me it really doesn't sound as if Tresiba will suit you, I've been on it 5 years now and personally would change now if I could, it wasn't so bad when I was only using 1u a day but it's increased A LOT the last year making nights more difficult hence the 50-60g carbs often needed before bed xx
See this is what worries me, I’ve been so food restricted for such a long time I really don’t know how I’m going to get to grips with all this as he’s also recommending gliclazide. I’m really not sure I’m ready for these drastic changes. I currently eat less than 50g carbs per day, I realise that with my weight that this isn’t sustainable and my body is suffering with constant exhaustion that’s ruining my life, I’ve kinda got into a routine that I’m scared about changing. I have crippling anxiety and since I’ve come off insulin and have managed through d&e at least I don’t have to worry about lows. I know something has to change as I just can’t function, 2 of my kids have birthdays one tomorrow one Monday, normally I’m so organised but I have just lost it and everything is so overwhelming to me these days. I’m sorry to offload. Consultant is convinced I have MODY but what’s the chances of getting tested for that? If I do, would my kids need testing ? What if I’ve given it to them? Just another layer of guilt/anxiety. One part of me hopes I do get tested so I get the right treatment but if it is that it’s brings with it a whole new set of worries. I just wanna be me again. Xx
rebrascora
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Didn't think about that scenario where very low doses are used, but makes sense.
Kopiert
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I can be of no help whatsoever - but I do wish you the best of the luck. It can be pretty exhausting dealing with this - and I only have a T2 simple diet controlled (just!!!) version.
Thankyou so much! Do you ever wonder what it would be like without diabetes ? And what you would do with all that spare space in your head lol
Right so I’m going to bake birthday cakes ! Come on Emma… you got this!
rebrascora
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Really feel for you as I know you have tried so hard and are at your wits end with it. Maybe you need to bite the bullet and start eating "normally" and learn how to use the insulin effectively. My gut feeling is still that you are a slow onset Type 1 and for some reason the tests are not indicating it. I am not sure what the test was for insulin resistance you had but I find it very hard to believe that that is correct when you need so little insulin.
I know I went from very low carb to being told to eat normally and use the insulin and I found it very scary and I went back to low carb and minimal insulin and that works for me but as I get more experienced I am more inclined to experiment a bit and I have found a happy balance. So occasionally I shoot myself 4 or 5 units of insulin and treat myself to a sweet mince pie. Mostly I stick to about 70-100g carbs which gives me more leeway with diet whilst not needing to use a lot of insulin.
What I will say is that my early hypos were really scary but once my body got used to them and I gained confidence, I don't find them a problem physically or mentally now. Even nocturnal hypos, which I lived in fear of for a long time and then I had a few in a row and I started to realize that whilst best avoided, they are often less of a worry than the daytime ones.
It is the fear which is more debilitating than the practicalities in many respects. I really quite like having more of a "gung ho" attitude now. I treat it more like a game than a worry or a major health issue. If I get it wrong, I do my best to figure out why and move on. If I get it right, I celebrate and give myself a big pat on the back. I do think there is a bit of a mental barrier to break through and I am in no doubt that I will hit other mental barriers along the way, but if you can be brave and push through it, it is well worth it.
The early days with diabetes and insulin can be really frustrating because the honeymoon period makes things less predictable so often it doesn't make sense, but the longer you stick at it, the more sense it starts to make and the more confident you get. I definitely felt that doing DAFNE was quite a big turning point for me and getting Libre, but I wonder if perhaps you got Libre too soon.
Thanks for the time you always take replying to people. I do have positive antigad, and at the time of diagnosis my BGs could get to 28 or so. I have often wondered if I’d carried on eating normally would I have eventually got really poorly then there would of been no question I was type 1. It’s the on off issue with blood sugars for 20 years or so that lead the consultant to consider MODY. One thing he did say that was as I’m gad positive there is beta cell dysfunction so I’m not type 2. So that’s one off the list . I’ve been borderline gestational diabetes before, but I always just scrape through, any blood tests over the years have shown high sugars but again borderline, so if it is type 1 I’ve been developing for at least 24 years (since my first pregnancy) think this is where the MODY comes in. Thankyou so much for all your advice as always I’m am very grateful.
P.s yes libre gave me anxiety to start with but I can just about cope now lol
Inka
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I’m not convinced your MODY either. Type 1 can come on extremely slowly and the time it takes to appear can depend on a person’s lifestyle and diet, and even once it has been diagnosed, people can have a long honeymoon with very small amounts of insulin. Please, please don’t take this the wrong way, but I think it’s probable your restricted eating has confused things.
I think you need to eat normally and use the appropriate insulin to control your blood sugar. That is, if you, say, eat a normal breakfast of Weetabix, milk and a slice of toast, and your post-prandial blood glucose is 15 or whatever, then you simply need some bolus insulin before breakfast. Lunch - again eat a normal healthy lunch, and then a normal evening meal. Use as much or as little insulin as you need in order to eat normally.
Without proof you’re MODY, I’d personally be loathe to take Gliclazide because it’s not good for Type 1 and you risk squeezing the remaining life out of your beta cells. Not good.
As for Tresiba, certain insulins seem to become ‘fallback’ ones and so are automatically used when often a different basal would be better. I think you should ask for a twice daily basal eg Levemir. You may then find you only need tiny doses or even zero for one dose.
Be pushy @EmmaL76 You don’t have to take what you’re given. Ask for a trial of what you want eg a 3 month or 6 month trial of Lev and Humalog or whatever. You’ve been muddled around enough.
As a reminder, my Type 1 onset was considered “atypical”. I also scored much higher on the MODY screening test than I presume you did. And yet I’m still Type 1. Type 1 can present in different ways. Over the years, I’ve ‘spoken’ to many other Type 1s who’ve had unusual onsets, usually with regard to the slowness of onset, the fact they still make some insulin, etc etc. Keep your wits about you, be pushy and assume nothing. X
trophywench
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- Type 1
Yep @Inka - the Joslin Institute (in Boston USA) regularly followed a bunch of people who'd been diagnosed T1 as children, some of whom were aged 80-ish so T1 for 70+ years. Some still produced some insulin; others did not - and despite all of their lifelong medical history - Joslin have been totally unable to fathom out why some do and some don't. Who knows whether anyone does or doesn't? - unless we still produce enough to a) keep us alive and b) function well it's NBG to us anyway! (except I wonder - do you get more/less diabetic complications if you do/don't? - though I would have expected Joslin to have noted this if it's a factor)
Thank you inka! Wow it’s all so confusing isn’t it. I agree that my approach has more than likely made the situation more complicated. I will definitely take what’s been said today on board. I’m just feeling tired of it all now and just want a routine that works for me, I know this isn’t possible 100% of the time but some of it would be nice. Thanks again to all of you lovely people. I really don’t know what I would do without you guys xx
Also can I just add that my c peptide showed possible resistance i missed that question earlier x
mikeyB
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- Type 1
My consultant suggested at an appointment last year that i change to Tresiba, but I refused, using the argument that once you inject it, you can't take it out - that's your lot. This applies to all long acting insulins, and why my consultant in Scotland advised a switch from Lantus to Levemir in a split dose morning and evening to avoid night time hypos. The ultra long acting Tresiba is even worse, making it impossible to make fine adjustments to your basal insulin, whatever you are doing, and in my case any time I have to start on high dose steroids.
You then have to adjust your diet to the insulin on board, and exercise accordingly. It's the exact opposite to modern T1 care, which is why I wouldn't touch it with a bargepole. You will note that the new insulins appear when the patents are due to expire on the older insulins, and Tresiba follows that same pattern. They discovered that it was ultra long acting, and having spent the money on producing it, the clinical justifications followed, rather than being produced for a specific need. That's why Fiasp, which I use, was created from Novorapid, with a bit of Vit B3 added to make it work faster. That appeared shortly after the Novorapid patent expired.
You then have to adjust your diet to the insulin on board, and exercise accordingly. It's the exact opposite to modern T1 care, which is why I wouldn't touch it with a bargepole. You will note that the new insulins appear when the patents are due to expire on the older insulins, and Tresiba follows that same pattern. They discovered that it was ultra long acting, and having spent the money on producing it, the clinical justifications followed, rather than being produced for a specific need. That's why Fiasp, which I use, was created from Novorapid, with a bit of Vit B3 added to make it work faster. That appeared shortly after the Novorapid patent expired.
Inka
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- Type 1
Yes, this is the ‘odd one out’. However, you say “possible”? Perhaps you don’t have insulin resistance? Also, a very low carb diet can cause insulin resistance itself, which is why people are advised to eat normal amounts of carbs before an oral glucose tolerance test.
The concern with MODY, as you rightly identify, is that there’s a risk your children have inherited it. I’d push for tests for that reason alone.
What’s frustrating for you is that the diagnosis process takes so long. It’s a pity they can’t just do all the tests in one go and give you a definite answer! I do think insulin will help you eat normally though whatever type you have, and I also think you’d be best-served by getting the right insulin for you.
When you ate normally, when were your highs? Were they always after meals and that’s what led you to cut your food right down, or were they generally high?
I know, nothing seems to make sense for me. It’s driving me crazy. The c peptide was urine and it was shortly after diagnosis so hadnt really made much changes. My diet at that point was pretty healthy anyway, bit of a sweet tooth but not ridiculous. I was shocked as my as my ac1 was only 51, but home testing, fasting around 13/15 and would stay in teens most of the day but if I ate normally I could reach nearly 30. Was in metformin for a couple of months and sugars didn’t budge. Started insulin with new diagnosis in December last year, I just couldn’t seem to get it right, I’d take it half hour before and eat normal have massive spikes then drop real low, I was carb counting correctly. I have maintained good control with my current diet but as you know I am disappearing fast. I just never feel well. I was so active even with sugars that high. Now I’m basically a zombie xx
Thanks for the heads up, this is really helping me a lot. X
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