Hello

[Kel3]

Hello, my name is Kelly, I have type 1 diabetes (amongst other autoimmune diseases) and it will be my 20 year diaversary next month. I have completely hit a brick wall these couple of months and my control has gone from HbA1c 54 to HbA1c 63 since July. Whatever I do is not helping. Hoping for help with any ideas, although I had covid at the end of August and my DSN thinks that is playing a big part.

I am on MDI Novorapid and Tresiba but wondering how any of you on Fiasp feel? I would like to try but my consultant refused at my last appointment.

Hope you are all well.

 

[adrian1der]

Hi Kelly and welcome. I'm a T2 so can't help with your query but just wanted to say hello. Some of our T1s will be along shortly I'm sure

 

[adrian1der]

Actually one of our most helpful members has been on both so I'll call her in @rebrascora

 

[Kel3]

Actually one of our most helpful members has been on both so I'll call her in @rebrascora

Hello, and thank you.

 

[rebrascora]

Hi and welcome from me too.

Sorry to hear you have had Covid and that may well have impacted your management and continue to do so. There is certainly a link between the virus and diabetes which isn't fully understood. Even just the vaccine has caused issues for people with their BG levels, both short term and longer term. My insulin needs nearly doubled over the 3 months following my first vaccine and has remained high but there is another member here whose insulin needs reduced by 80% so it is quite individual how we respond and of course neither of us can say for sure that it was the vaccine which triggered it.

Yes, I am currently using Fiasp (this is my second attempt with it) and previously I was using NR. It has taken me several months not to be really frustrated with the Fiasp and want my NR back, but I promised myself I would give it a full year's trial this time and about 4-5 months in I felt like I started to get to grips with it, but it does have it's quirks and they can be different for different people, from some of the posts on the forum. I would probably still quite happily go back to NR but I expect it would take me more time and frustration to transition back to it now that I have sort of got the measure of how Fiasp works with me. Of course I would then have the problems to deal with that Fiasp helps with.... namely needing over an hour pre bolus time on a morning with NR. It's 45mins with Fiasp, so not a massive improvement, but I have found a routine that I can fit into 45 mins on a morning without getting distracted.

I think it is important to discuss why you think Fiasp will help you to improve your control. What problems are you seeing that you hope it will help with. Do you have Freestyle Libre sensors to help identify where the problems lie? Could it be that your basal is not suiting you, rather than the NR? Very long acting insulins like Tresiba can work for some people but it certainly wouldn't work for me because I need so much less insulin at night compared to during the day. I love my split dose Levemir for providing me with that flexibility, to fine tune my basal needs. Having a basal insulin which suits you and getting the dose as close to "right" as you can is the first step in improving management. I regularly have to adjust my Levemir doses to balance things and the Freestyle Libre really helps me to see where and when it needs tweaking.

The main reason for my switch to Fiasp was that I either bolused over an hour before breakfast and risked getting sidetracked and forgetting that I hadn't eaten (and consequently hypoing) or waiting less time and regularly spiking up to 15 and then crashing back down an hour or so later. The rest of the day it was just 20 mins prebolus time but breakfast time was a total pain. I follow a low carb way of eating where I often have to correct after meals for protein breakdown so I wanted something a bit faster than NR to handle those corrections although Fiasp has not really been much of a benefit in that respect and I have learned that I need more Fiasp than NR to do the same job.

This of course is just my experience but Fiasp isn't the amazingly fast insulin it is cracked up to be, in my experience. It's just a little bit less slow than the Novo(notso)Rapid and comes with it's own little quirks.

If you want to share more info about the problems you are having with your diabetes management, I am sure myself and others will be happy to give our take on it and perhaps offer tips as to what might help.

I am not trying to dissuade you from trying Fiasp but just be aware that it isn't always as great as you might hope it to be.
If you are still keen to try it then make a case for yourself with bullet points to show the consultant why you think it will help you. I have found that if you do your homework and go into your appointment well prepared with evidence and research and particular instances where you think it would have helped, then you have a better chance of coming away from it with a positive outcome. If your consultant continues to refuse, ask them to detail why they believe it won't be beneficial in your case and then go away and do more research to disprove him/her.

I think it is likely that they get feedback from disgruntled patients who try Fiasp and don't get on with it and that may well colour their judgement but that doesn't mean it will be the same for everyone, so if you really want to try it, keep pushing.

 

[PattiEvans]

Hi there @Kel3
I've not had Covid but a lot of people (not necessarily with diabetes) still have lingering after affects from it. Any illness that your body is fighting puts the body under stress and a body under stress produces Cortisol, a natural steroid hormone, which in it's turn raises BGs.

I haven't tried Fiasp, but I seem to be the only person round here who is on Apidra as a fast acting insulin. In the past I have tried Novorapid and Humalog, both of which were fairly slow and both had long tails for me, particularly Humalog. Apidra is quite stable and though I have to bolus in advance it's not as long in advance as Novo and it is gone out of my system in 4 hours flat. I only went on it because my clinic wanted all their pumpers on Apidra but I do like it a lot.

I'd second @rebrascora regarding Levemir, when I was on MDI I found Levemir much more easy to fit into my regime and easier to titrate the dose as necessary.

 

[everydayupsanddowns]

Sorry to hear you’ve been having a tough time recently @Kel3

It’s really frustrating when you put all the effort in, and play your part, but then your diabetes completely ignores it’s side of the bargain 😡

I tried Fiasp, and it didn’t work well for me (it stopped working quickly after a while, and i seemed to build up resistance to it). But we have several members who are very happy on it.

Were you given a reason why it was felt not appropriate in your case?

 

[Kel3]

Hi and welcome from me too.

Sorry to hear you have had Covid and that may well have impacted your management and continue to do so. There is certainly a link between the virus and diabetes which isn't fully understood. Even just the vaccine has caused issues for people with their BG levels, both short term and longer term. My insulin needs nearly doubled over the 3 months following my first vaccine and has remained high but there is another member here whose insulin needs reduced by 80% so it is quite individual how we respond and of course neither of us can say for sure that it was the vaccine which triggered it.

Yes, I am currently using Fiasp (this is my second attempt with it) and previously I was using NR. It has taken me several months not to be really frustrated with the Fiasp and want my NR back, but I promised myself I would give it a full year's trial this time and about 4-5 months in I felt like I started to get to grips with it, but it does have it's quirks and they can be different for different people, from some of the posts on the forum. I would probably still quite happily go back to NR but I expect it would take me more time and frustration to transition back to it now that I have sort of got the measure of how Fiasp works with me. Of course I would then have the problems to deal with that Fiasp helps with.... namely needing over an hour pre bolus time on a morning with NR. It's 45mins with Fiasp, so not a massive improvement, but I have found a routine that I can fit into 45 mins on a morning without getting distracted.

I think it is important to discuss why you think Fiasp will help you to improve your control. What problems are you seeing that you hope it will help with. Do you have Freestyle Libre sensors to help identify where the problems lie? Could it be that your basal is not suiting you, rather than the NR? Very long acting insulins like Tresiba can work for some people but it certainly wouldn't work for me because I need so much less insulin at night compared to during the day. I love my split dose Levemir for providing me with that flexibility, to fine tune my basal needs. Having a basal insulin which suits you and getting the dose as close to "right" as you can is the first step in improving management. I regularly have to adjust my Levemir doses to balance things and the Freestyle Libre really helps me to see where and when it needs tweaking.

The main reason for my switch to Fiasp was that I either bolused over an hour before breakfast and risked getting sidetracked and forgetting that I hadn't eaten (and consequently hypoing) or waiting less time and regularly spiking up to 15 and then crashing back down an hour or so later. The rest of the day it was just 20 mins prebolus time but breakfast time was a total pain. I follow a low carb way of eating where I often have to correct after meals for protein breakdown so I wanted something a bit faster than NR to handle those corrections although Fiasp has not really been much of a benefit in that respect and I have learned that I need more Fiasp than NR to do the same job.

This of course is just my experience but Fiasp isn't the amazingly fast insulin it is cracked up to be, in my experience. It's just a little bit less slow than the Novo(notso)Rapid and comes with it's own little quirks.

If you want to share more info about the problems you are having with your diabetes management, I am sure myself and others will be happy to give our take on it and perhaps offer tips as to what might help.

I am not trying to dissuade you from trying Fiasp but just be aware that it isn't always as great as you might hope it to be.
If you are still keen to try it then make a case for yourself with bullet points to show the consultant why you think it will help you. I have found that if you do your homework and go into your appointment well prepared with evidence and research and particular instances where you think it would have helped, then you have a better chance of coming away from it with a positive outcome. If your consultant continues to refuse, ask them to detail why they believe it won't be beneficial in your case and then go away and do more research to disprove him/her.

I think it is likely that they get feedback from disgruntled patients who try Fiasp and don't get on with it and that may well colour their judgement but that doesn't mean it will be the same for everyone, so if you really want to try it, keep pushing.

Thank you so much for your reply. The covid vaccine did have an effect for a few weeks each time, I’m booked for the booster at the end of this month and am dreading that making things even worse than they are already.

I would like to try Fiasp basically because I am ready to try anything and had heard good things about it. I also rarely remember to inject very far in advance of my meals and have huge spikes, especially mid-morning, which then crash to lows within an hour or so. I am not set on Fiasp though, just open to trying anything at the moment. I thought of possibly going back to Levemir from Tresiba and splitting the dose, but Tresiba does seem to keep me stable when I don’t eat so I don’t really think that is the issue.

I have always been really sensitive to insulin and rarely correct as usually correcting makes me crash back down so what is happening now and the stubbornness of my sugars remaining high is all new to me. The fact I tend to drop low so quickly was the reason my consultant refused Fiasp because she said as it acts quicker I will hypo quicker and more often and she felt the risk of that was higher than the benefits.

Alongside Type 1 I also have hypothyroidism and MCTD and I do feel the MCTD makes my diabetes harder to control, especially when things are flaring. Usually though I can sort it, or it comes back to my normal within a couple of weeks.

 

[Kel3]

Hi there @Kel3
I've not had Covid but a lot of people (not necessarily with diabetes) still have lingering after affects from it. Any illness that your body is fighting puts the body under stress and a body under stress produces Cortisol, a natural steroid hormone, which in it's turn raises BGs.

I haven't tried Fiasp, but I seem to be the only person round here who is on Apidra as a fast acting insulin. In the past I have tried Novorapid and Humalog, both of which were fairly slow and both had long tails for me, particularly Humalog. Apidra is quite stable and though I have to bolus in advance it's not as long in advance as Novo and it is gone out of my system in 4 hours flat. I only went on it because my clinic wanted all their pumpers on Apidra but I do like it a lot.

I'd second @rebrascora regarding Levemir, when I was on MDI I found Levemir much more easy to fit into my regime and easier to titrate the dose as necessary.

I have not actually heard of Apidra, glad to hear it works for you and definitely something I could also mention. I am just at the point where I am willing to try anything at the moment. I did like Levemir and can't actually remember why I was moved to Tresiba, I remember Lantus being really awful for me though. I am going to take all of these possibilities into consideration - and hopefully speak to my DSN very soon.

 

[Kel3]

Sorry to hear you’ve been having a tough time recently @Kel3

It’s really frustrating when you put all the effort in, and play your part, but then your diabetes completely ignores it’s side of the bargain 😡

I tried Fiasp, and it didn’t work well for me (it stopped working quickly after a while, and i seemed to build up resistance to it). But we have several members who are very happy on it.

Were you given a reason why it was felt not appropriate in your case?

Thank you. It certainly is frustrating, I have always been pedantic about my control and do everything I can so am getting so disappointed with trying everything and nothing working. The reason my consultant felt Fiasp wasn't for me is that I tend to drop quite quickly and she felt the risk of increasing my hypos and making the drop quicker outweighed any benefits. I have always had a lot more lows than highs, until these past couple of months.

 

[rebrascora]

Learning to pre bolus is key to stopping those spikes and then mid morning crashes. I remember how awful that made me feel so I can sympathise in that respect. What I do is inject before I get out of bed on a morning and then I potter on getting washed and having a coffee and making my breakfast and catching up on here until my Libre shows that the Fiasp has kicked in and I can start eating. The advantage of injecting before I get out of bed is two fold. It is easy to get into a routine of it, it allows me enough time for the insulin to kick in whilst I follow my morning regime and it helps to deal with Foot on the Floor Syndrome/Dawn Phenomenon as it is happening, which is probably the main reason why the insulin takes so long to work on a morning, because the liver is pumping out glucose as soon as we wake up, so the insulin is swimming against a strong tide and that slows it's effectiveness.

Have to say, I have just made a note to ask my consultant about trying Apidra as a result of @Pattidevans post (Thanks Patti!) and also a new one on the market Lyumjev which is also supposed to be faster acting. I am certainly not committed to staying with Fiasp and I seem to be needing increasing doses to do the same job as it did 6 months ago. That might have to do with my body changing, but it is something that other people have also mentioned with it. I really resent needing 4 units of insulin for a bowl of soup and a very small slice of bread (9g carbs) and still needing a correction later!

 

[Drummer]

I am pretty sure I had covid early on - I live in a sea port with a ferry terminal and so many people had a really nasty 'dose of the flu' that winter. Ordinary cough mixture hardly helped. My Hba1c went up, having been nailed to 42 for years - no one bothered to tell me, and the person who did phone up to try to get me to take a statin got a 'no' in no uncertain terms.
By the test in the following year all was back to normal for the diabetes, but my thyroid medication was reduced. It had been 200 micrograms for at least a decade, at each subsequent test it has been reduced and I am now down to 125. It seems my thyroid was not dead after all, only supressed.
Perhaps going back to your nurse, maybe with your BG readings and setting out the problems rather forcefully could bring some sort of response if things don't improve at all.
I well remember, even after so long, the difficulty I had in getting the thyroid problem sorted out - being told it was nothing, nothing, nothing, nothing - oh, something is seriously wrong. Good job my cardio vascular system wasn't compromised with that sort of announcement from a GP.

 

[Kel3]

I am pretty sure I had covid early on - I live in a sea port with a ferry terminal and so many people had a really nasty 'dose of the flu' that winter. Ordinary cough mixture hardly helped. My Hba1c went up, having been nailed to 42 for years - no one bothered to tell me, and the person who did phone up to try to get me to take a statin got a 'no' in no uncertain terms.
By the test in the following year all was back to normal for the diabetes, but my thyroid medication was reduced. It had been 200 micrograms for at least a decade, at each subsequent test it has been reduced and I am now down to 125. It seems my thyroid was not dead after all, only supressed.
Perhaps going back to your nurse, maybe with your BG readings and setting out the problems rather forcefully could bring some sort of response if things don't improve at all.
I well remember, even after so long, the difficulty I had in getting the thyroid problem sorted out - being told it was nothing, nothing, nothing, nothing - oh, something is seriously wrong. Good job my cardio vascular system wasn't compromised with that sort of announcement from a GP.

I spoke with my DSN again this morning and she is certain that it is the covid lingering around affecting my diabetes. I know it had a massive effect when I had it and it hasn't improved since. She also feels I may have an issue with absorption so am trying a new injections site as a starter point.
I totally empathise with your thyroid problem, I have hashimotos, as does my eldest daughter, and she has been so poorly recently which had been ongoing for months and ended up in a referral to an eating disorder team before a nurse within the team realised it was her thyroid being out of control that was causing everything - something that had been regularly checked but her gp had said was "normal" each time.

 

[PattiEvans]

I also rarely remember to inject very far in advance of my meals and have huge spikes, especially mid-morning, which then crash to lows within an hour or so.

I do find that unless I remember to bolus ahead I get the same thing, a nasty spike followed by a pretty steep descent. However, are your BGs higher all the time, or just this spike? I was thinking about you this morning after reading this thread and I recalled a member of another forum who had just startedon a pump felt his basal was fine because his numbers were steady when he'd not eaten. They were flat but much too high all the time at about 11/12. When he increased his basal a bit his numbers were still steady but much more in the normal range. Have you by any chanceput a bit of weight on? That can affect basal needs, or just the weather changing, or any number of other factors such as the covid as you suspect.

I have hashimotos, as does my eldest daughter, and she has been so poorly recently which had been ongoing for months and ended up in a referral to an eating disorder team before a nurse within the team realised it was her thyroid being out of control that was causing everything - something that had been regularly checked but her gp had said was "normal" each time.

Eeeek, there's a "range" of numbers in the so called normal range and what may be OK for some is far too high (or low) for another. Doctors seem reluctant to diagnose an underactive/overactive thyroid if you fall anywhere in the range.

 

[PattiEvans]

Have to say, I have just made a note to ask my consultant about trying Apidra as a result of @Pattidevans post (Thanks Patti!) and also a new one on the market Lyumjev which is also supposed to be faster acting. I am certainly not committed to staying with Fiasp and I seem to be needing increasing doses to do the same job as it did 6 months ago. That might have to do with my body changing, but it is something that other people have also mentioned with it. I really resent needing 4 units of insulin for a bowl of soup and a very small slice of bread (9g carbs) and still needing a correction later!

@rebrascora I find I need very little Apidra. My total daily dose is well under 20u, never over, but of course it depends what I eat. My basal is just over 10u.

 

[rebrascora]

@rebrascora I find I need very little Apidra. My total daily dose is well under 20u, never over, but of course it depends what I eat. My basal is just over 10u.

I usually manage on less than 14 units of Fiasp a day which I still consider extremely extravagant (I love it when I can manage on just 5 or 6units a day) but I currently need a whopping 32 units of basal... 24 morning and 7-8 at night. I know I need to get over this mindset of resenting needing so much insulin, but I still do! At least I no longer resist increasing it when I need to, so I guess I am making some mental progress! It's a funny old condition how it affects you mentally!

 

[Kel3]

I do find that unless I remember to bolus ahead I get the same thing, a nasty spike followed by a pretty steep descent. However, are your BGs higher all the time, or just this spike? I was thinking about you this morning after reading this thread and I recalled a member of another forum who had just startedon a pump felt his basal was fine because his numbers were steady when he'd not eaten. They were flat but much too high all the time at about 11/12. When he increased his basal a bit his numbers were still steady but much more in the normal range. Have you by any chanceput a bit of weight on? That can affect basal needs, or just the weather changing, or any number of other factors such as the covid as you suspect.

Eeeek, there's a "range" of numbers in the so called normal range and what may be OK for some is far too high (or low) for another. Doctors seem reluctant to diagnose an underactive/overactive thyroid if you fall anywhere in the range.

My numbers are not high all the time, I woke on a 8.7 this morning, they do tend to spike then drop. I have lost a few pounds recently too so don't think that is the issue. Just going to have to keep tweaking and plodding on for the minute and hope it starts to settle I think.

 

[PattiEvans]

My numbers are not high all the time, I woke on a 8.7 this morning, they do tend to spike then drop. I have lost a few pounds recently too so don't think that is the issue. Just going to have to keep tweaking and plodding on for the minute and hope it starts to settle I think.

Sounds like it. I’m sure they’ll drop when the Covid is completelymout of your system.

 

[PattiEvans]

I usually manage on less than 14 units of Fiasp a day which I still consider extremely extravagant (I love it when I can manage on just 5 or 6units a day) but I currently need a whopping 32 units of basal... 24 morning and 7-8 at night. I know I need to get over this mindset of resenting needing so much insulin, but I still do! At least I no longer resist increasing it when I need to, so I guess I am making some mental progress! It's a funny old condition how it affects you mentally!

Barbara, sorry, I phrased my response wrong. On a pump you only use one insulin, for me that’s Apidra. I use under 20 units per day of which 10.3u acts as basal being dripped in continuously, so in fact I am using 8/9u as bolus. Honestly though you need what you need, you shouldn’t worry how much that is.

Also n a pump you need so much less - when I was on MDI my total daily usage was around 46/8 units.

 

[trophywench]

Oh yes - originally when I had my first pump - 8 of us in a room all getting our first Combo - anyway whatever our TDD basal was, knock off one third and then we were each told individually how to divide that up into hourly portions to enter into our pumps. Weeks and weeks of tweaking and phone calls after to get it better - and that's a feature of pumping for ever - just less so as time goes on is all.

I remember thinking 'How the hell is this going to work then?' (so much less to do the same job) but it just does, full stop.