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Omnipod user for 2 years and I've felt unwell since then. Could it be Fiasp?

ellietj

ellietj

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Type 1
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I've been Type 1 since 1970, reasonably well controlled so I'm still youthful and active and otherwise healthy. I moved onto an Omnipod with Freestyle ** Libre 2 years ago, at exactly the same time as my husband and I separated. The marriage hadn't been good for a long time, so in many ways it came as a relief, though I did go through a period of feeling low for some months after. My symptoms were tiredness, a constant tight band round my head and feelings (hard to describe) that my head had shrunk in some way! I accepted this was probably depression and everyone told me it would fade away. But it never has. If anything, it's got worse. My GP has tried changing my doses of blood pressure meds (no change), my blood pressure is generally OK and stable, I've seen a neurologist (I'm fine). I've discussed this feeling frequently in the hospital pump clinic.
My sodium and iron levels have been checked and are OK.
No one can find a cause, and I'm left feeling that there might be some underlying cause that no one has thought of. Clinic says it's not possible to have any kind of bodily reaction to wearing an electronic device and they have even discussed this with Omnipod, who have never heard of similar reactions. [** Since 2024 I've been moved onto Dexcom, which I dislike as it irritates my skin, but that's a different matter!]
I'm now asking myself if anyone has any observations about Fiasp insulin, which I've used since the outset on the pump as it is quick-acting. I realise I may be grasping at straws, but then I don't know anyone else with a pump, so there might be someone out there who can offer a suggestion no one has thought of.
 
Sorry about your marriage and depression, hope your doing better mentally now.

I am on fiasp and I feel generally well most of the time.

What are your current symptoms?
 
I too have been fine with fiasp for 3 or 4 years.
But it sounds like something that is easy to change to at least rule out.
Could you ask for a vial of NovoRapid so see if it makes any difference (apart from taking longer to start working)?
 
I agree with @helli Rule out the Fiasp. It sounds like a tension/muscular headache to me @ellietj After a very stressful period of my life, I developed an excruciating headache. I had it most days. Some days it was ‘just’ painful, but other days it was unbearable. I tried everything.

By chance, I worked out that it was to do with a stress reaction. I wasn’t aware I was doing it, but every night I kind of set my face in a certain way as I lay down (hard to explain but it was a subtle, subconscious positioning). It was this that was the cause of my headaches! After a week or two of consciously training myself not to do that, the headaches disappeared.
 
As above I’d rule out Fiasp being involved in how you’re feeling by contacting your DSN and discussing a trial of a different insulin.

I changed from Humalog to Lyumjev last year- not the same I realise- but I have felt so much better since using Lyumjev. I didn’t realise how ‘off’ for want of a better expression I had been feeling on Humalog but changing insulin has helped me feel so much better. I can’t explain what is better but it is.

Definitely worth a try of a different insulin for a few weeks to see if it has any effect.

I hope you can find something that helps you.
 
Headaches can sometimes be from problem in your neck. Many have poor posture particularly when using the computer for extended periods of time as people often do these days. A chiropractor may be able to help but certainly worth ruling out your insulin being the cause.
 
Sorry to hear what a tricky time you’ve been having @ellietj

You’ve had a lot going on for the past couple of years so it would be very difficult to work out what was causing your unusual and unpleasant sensations.

I had something of a reaction to Fiasp (one or two of us on the forum had similar, but most get on really well with it). Mine was more like a site irritation, itching/pain when boluses were being delivered, and a general unpredictability / insulin resistance to the insulin itself.

Hope you get to the bottom of what’s causing the fatigue and headaches.
 
everydayupsanddowns said:
Sorry to hear what a tricky time you’ve been having @ellietj

You’ve had a lot going on for the past couple of years so it would be very difficult to work out what was causing your unusual and unpleasant sensations.

I had something of a reaction to Fiasp (one or two of us on the forum had similar, but most get on really well with it). Mine was more like a site irritation, itching/pain when boluses were being delivered, and a general unpredictability / insulin resistance to the insulin itself.

Hope you get to the bottom of what’s causing the fatigue and headaches.
Click to expand...
Thanks for your thoughts. It's interesting to hear mention of general unpredictability, as I have felt Fiasp to be rather unpredictable for some time.
 
Leadinglights said:
Headaches can sometimes be from problem in your neck. Many have poor posture particularly when using the computer for extended periods of time as people often do these days. A chiropractor may be able to help but certainly worth ruling out your insulin being the cause.
Click to expand...
Thank you. You could be right. I've spent a lot of time over a hot keyboard of late!
 
Flower said:
As above I’d rule out Fiasp being involved in how you’re feeling by contacting your DSN and discussing a trial of a different insulin.

I changed from Humalog to Lyumjev last year- not the same I realise- but I have felt so much better since using Lyumjev. I didn’t realise how ‘off’ for want of a better expression I had been feeling on Humalog but changing insulin has helped me feel so much better. I can’t explain what is better but it is.

Definitely worth a try of a different insulin for a few weeks to see if it has any effect.

I hope you can find something that helps you.
Click to expand...
Thank you. The clinic has suggested moving onto Novorapid and comparing the results, which I'm happy enough to do, although I'm not thrilled with the thought of going back to bolusing 15 minutes before eating. They suggested Lyumjev as being the other fast-acting insulin but told me it wasn't suitable for a pump and that people complained of painful sensations when a bolus was being delivered. Not a good selling point!
 
Inka said:
I agree with @helli Rule out the Fiasp. It sounds like a tension/muscular headache to me @ellietj After a very stressful period of my life, I developed an excruciating headache. I had it most days. Some days it was ‘just’ painful, but other days it was unbearable. I tried everything.

By chance, I worked out that it was to do with a stress reaction. I wasn’t aware I was doing it, but every night I kind of set my face in a certain way as I lay down (hard to explain but it was a subtle, subconscious positioning). It was this that was the cause of my headaches! After a week or two of consciously training myself not to do that, the headaches disappeared.
Click to expand...
Thank you. That's a thought worth my considering. It's good to have people thinking laterally about a problem like this one!
 
Fiasp user here using omnipod pump & not had any issues so far, only way to rule out if fiasp is causing issues is to change insulin as @helli suggests, originally started off on omnipod using novorapid insulin so that might be an option, best discuss possibility with your dsn.
 
Omnipod 5 Difficulties

Hi everyone, I hope you’re all doing well.

I’m new to the forum and wanted to share my experience as a type 1 diabetic for the past 35 years. My diabetes has always been well-controlled, and I maintain an active lifestyle while being mindful of my diet, avoiding bread, pasta, potatoes, and rice.

I recently tried the Omnipod 5 for three weeks but have now decided to return everything. Despite my efforts, I've experienced some challenges. The pod seems to have slow responses to my insulin needs, and I’ve seen my sugar levels spike at times between 15-22, which is concerning. I appreciate the support from the Diabetic Nurses who have been incredibly helpful in trying to identify the issues. Given my lean physique, I find I have limited options for pod placement, as it can only go around my lower back.

Additionally, I had some connection issues with the Libre Sensor, to Omnipod, yet my smartphone was unaffected, which makes for issues surrounding reliability a real concern. I would love to hear from anyone who might have had similar experiences or suggestions for improving my management with new technologies. Thank you!

I had high hopes, but I guess when you know your own body, you can keep it balanced
 
Hi @Tennis 4015 and welcome to the forum.

I believe others here have experienced similar issues with Omnipod 5 and Libre. @PattiEvans is just changing to a different pump because of similar problems where she was getting much better results in manual mode than HCL with that combination of pump and sensor and I have definitely read other comments from users here on the forum about how slowly and poorly it responds to high levels and the connectivity issue which means that pump and sensor need to be adjacent to each other so often limiting site to the back of an arm for both which could potentially lead to site deterioration due to lack of rotation options.
 
Welcome @Tennis 4015 🙂 You’ve been Type 1 for just a few years longer than me. It never gets less of a nuisance, does it? Always got something up its sleeve to throw us off!

Have you been having problems with insulin resistance? Why are you avoiding bread, pasta and rice? I’ve eaten these since diagnosis and, indeed, they were recommended on my initial diet sheet all those years ago when I was on twice a day insulin (remember that?). The recommended diet for Type 1 is the same healthy diet recommended for everyone, so you should be able to eat reasonable quantities of all those carbs 🙂 In fact - and the main reason why I’m mentioning it - is that control is easier with some carbs and it’s possible your diet contributed to your issues with the Omnipod.

Was the Omnipod your first pump or had you used a pump before? If it was your first, don’t let that put you off. I’ve used pumps for more than 20 years - all tubed. As a slim person, I find tubed pumps easier and better. My current pump is the Dana i. I’ve chosen not to loop with it, but if I wanted to, it used CamAPS, which is a highly thought of HCL system.
 
Inka said:
Welcome @Tennis 4015 🙂 You’ve been Type 1 for just a few years longer than me. It never gets less of a nuisance, does it? Always got something up its sleeve to throw us off! Have you been having problems with insulin resistance? Why are you avoiding bread, pasta and rice? I’ve eaten these since diagnosis and, indeed, they were recommended on my initial diet sheet all those years ago when I was on twice a day insulin (remember that?). The recommended diet for Type 1 is the same healthy diet recommended for everyone, so you should be able to eat reasonable quantities of all those carbs 🙂 In fact - and the main reason why I’m mentioning it - is that control is easier with some carbs and it’s possible your diet contributed to your issues with the Omnipod. Was the Omnipod your first pump or had you used a pump before? If it was your first, don’t let that put you off. I’ve used pumps for more than 20 years - all tubed. As a slim person, I find tubed pumps easier and better. My current pump is the Dana i. I’ve chosen not to loop with it, but if I wanted to, it used CamAPS, which is a highly thought of HCL system.
Click to expand...
Inka said:
Welcome @Tennis 4015 🙂 You’ve been Type 1 for just a few years longer than me. It never gets less of a nuisance, does it? Always got something up its sleeve to throw us off! Have you been having problems with insulin resistance? Why are you avoiding bread, pasta and rice? I’ve eaten these since diagnosis and, indeed, they were recommended on my initial diet sheet all those years ago when I was on twice a day insulin (remember that?). The recommended diet for Type 1 is the same healthy diet recommended for everyone, so you should be able to eat reasonable quantities of all those carbs 🙂 In fact - and the main reason why I’m mentioning it - is that control is easier with some carbs and it’s possible your diet contributed to your issues with the Omnipod. Was the Omnipod your first pump or had you used a pump before? If it was your first, don’t let that put you off. I’ve used pumps for more than 20 years - all tubed. As a slim person, I find tubed pumps easier and better. My current pump is the Dana i. I’ve chosen not to loop with it, but if I wanted to, it used CamAPS, which is a highly thought of HCL system.
Click to expand...
Inka said:
Welcome @Tennis 4015 🙂 You’ve been Type 1 for just a few years longer than me. It never gets less of a nuisance, does it? Always got something up its sleeve to throw us off! Have you been having problems with insulin resistance? Why are you avoiding bread, pasta and rice? I’ve eaten these since diagnosis and, indeed, they were recommended on my initial diet sheet all those years ago when I was on twice a day insulin (remember that?). The recommended diet for Type 1 is the same healthy diet recommended for everyone, so you should be able to eat reasonable quantities of all those carbs 🙂 In fact - and the main reason why I’m mentioning it - is that control is easier with some carbs and it’s possible your diet contributed to your issues with the Omnipod. Was the Omnipod your first pump or had you used a pump before? If it was your first, don’t let that put you off. I’ve used pumps for more than 20 years - all tubed. As a slim person, I find tubed pumps easier and better. My current pump is the Dana i. I’ve chosen not to loop with it, but if I wanted to, it used CamAPS, which is a highly thought of HCL system.
Click to expand...

rebrascora said:
Hi @Tennis 4015 and welcome to the forum.

I believe others here have experienced similar issues with Omnipod 5 and Libre. @PattiEvans is just changing to a different pump because of similar problems where she was getting much better results in manual mode than HCL with that combination of pump and sensor and I have definitely read other comments from users here on the forum about how slowly and poorly it responds to high levels and the connectivity issue which means that pump and sensor need to be adjacent to each other so often limiting site to the back of an arm for both which could potentially lead to site deterioration due to lack of rotation options.
Click to expand...
Yes, I’m beginning to see that I’m not the only one that’s having difficulties. Thanks
 
Tennis 4015 said:
Yes, I’m beginning to see that I’m not the only one that’s having difficulties. Thanks
Click to expand...
My diabetes has been very well controlled and I don’t eat those type of carbs however I do eat vegetables salads, meats fish and my dietician and consultant have all concurred that I am extremely healthy and fit and are to continue the way that I am going.

This is my first pump however I haven’t got the time or the patience to watch 35 years of excellent control go down the pan why it works out how best it would administer my insulin so I’m reverting back to my pen which I’ve interested and had since I was diagnosed

I also have an endurance walk in four weeks, so I haven’t got the time to play around with the Omnipod device.
 
It’s completely understandable that you don’t want to continue with the Omnipod @Tennis 4015 The reason I refused an HCL was that I didn’t trust that it could do a better job than me and I was a bit nervous about giving it control. I do find a normal pump good though - ie a pump where I’m in control (ie no HCL). I personally think HCL has been over-hyped. My consultant said that if someone had a TIR of 85% then they wouldn’t make much difference.
 
Following a low carb way of eating may well also be causing a problem for the HCL because there may well be an element of protein release if you are not having significant amounts of carbs. I follow a similar dietary regime and it really suits me and I feel far healthier for it but I do have to inject about 2 hours after meals for protein release. It may be that you are doing enough exercise some of the time for the protein release to be utilised by your muscles.
Personally I wouldn't thank you for a pump in this situation as I don't think they are set up to cope with a low carb way of eating and my consultant is of the opinion that a pump on HCL could not do nearly such a good job as I do manually with Levemir and Fiasp. I don't find my insulin regime particularly onerous and I don't suffer with hypo anxiety, so I don't need a pump from that perspective either.
 
Inka said:
It’s completely understandable that you don’t want to continue with the Omnipod @Tennis 4015 The reason I refused an HCL was that I didn’t trust that it could do a better job than me and I was a bit nervous about giving it control. I do find a normal pump good though - ie a pump where I’m in control (ie no HCL). I personally think HCL has been over-hyped. My consultant said that if someone had a TIR of 85% then they wouldn’t make much difference.
Click to expand...
Welcome @Tennis 4015
I moved over from MDI to the Omnipod dash in 2023 and it was life changing actually much better control, less hypos, better sleep and so on.
In December 2024 I moved over to the Omnipod 5 as HCL and I had issues with the libre 2 plus and the connection. Which made it basically on manual mode again but the HCL was just doing random things. I am now on the Dexcom 6 which is much better. So I’m 62% in range the past 30 days which is about the same or little worse than I was before HCL.
Some days are perfect and I hardly think about D at all. Other days it’s really rubbish and it just won’t behave. It’s not better than me and I haven’t made my mind up how I feel about it yet.
Sleep is much better I will say that, which is bug deal. From MDI to pumping was life changing but yes this HCL I don’t know how I feel yet, waiting for my next appointment.
I don’t think it’s for everyone and if you’ve managed to tweak your current treatment to your situation then the change over can be the tricky bit. Those first few weeks I was so disheartened but I’ve been told to give it time, and then changed the sensor so that’s what I am doing and like @PattiEvans I will give it some time and then compare the before and after data and results with the other plus wins and loses and then decide.
Still deciding.
Changing to the pump was great for me though, and I would recommend giving that a go if MDI isn’t working as you would like it. Some people it works
 
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