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Type 1 Changed insulin over 3 months ago, still don't feel right.

Metalmama

Metalmama

Well-Known Member
Messages
53
Location
Surrey
Type of diabetes
Type 1
Treatment type
Insulin
Hello All,

I was on 2/day of Bovine insulin, and have recently changed to MDI 3/4 a day.

The change has been stressful to say the least, much lack of advice, allergic reactions to 2 insulins and a lot of other medical blunders.

I feel better but still exhausted from the change. Bloods show all is okay and it's just the impact of the changeover.

Has anyone else been impacted by changing insulin, and how?

Thanks.
 
I did a big change about 10 years ago and went from porcine insulins to novo rapid and levimir.
Went on the DAFNE course at the same time which helped.
After 34 years a type 1 at the time I felt I needed to drag myself into the 21st century.
10 years on I'm glad I did but it took patience and time and i had and still have a top quality GP who supported me along the way.

I wish you well.

Tony
 
Big change for me around Christmas I went from nearly 40 years of twice aday 30/70 insulin to MDI. Still not found the correct dose for MDI yet and not much advice given at switch over.
 
Tony337 said:
I did a big change about 10 years ago and went from porcine insulins to novo rapid and levimir.
Went on the DAFNE course at the same time which helped.
After 34 years a type 1 at the time I felt I needed to drag myself into the 21st century.
10 years on I'm glad I did but it took patience and time and i had and still have a top quality GP who supported me along the way.

I wish you well.

Tony
Click to expand...
Thanks Tony, I have never felt so ill with this changeover. T1 for almost 45 years.
Did you feel rough with the changeover? I have never felt so bad and the support has non existent.
Thanks for replying.
 
O_DP_T1 said:
Big change for me around Christmas I went from nearly 40 years of twice aday 30/70 insulin to MDI. Still not found the correct dose for MDI yet and not much advice given at switch over.
Click to expand...
Ahhh! Same, same!! I've had it nearly 45 and am still not on the correct dose. I have never felt so rough, and nobody has helped.
I am currently going hypo on half a unit for breakfast, rang the specialist for advice and been told to stop ringing so have been struggling since Christmas.
I feel for you as have EXACTLY the same problem.
 
Hi
Did they warn you that man made insulins are a lot stronger than animal insulins?
What insulin are you on and what dose?
I would guess that if half a unit is sending you hypo then you are having way too much background insulin?
Plus if you are feeling rough all the time then that too suggests the background dose is way out?

These are just suggestions and thoughts and am only trying to help.

Tony
 
Tony337 said:
Hi
Did they warn you that man made insulins are a lot stronger than animal insulins?
What insulin are you on and what dose?
I would guess that if half a unit is sending you hypo then you are having way too much background insulin?
Plus if you are feeling rough all the time then that too suggests the background dose is way out?

These are just suggestions and thoughts and am only trying to help.

Tony
Click to expand...
Hi Tony,

I've been given very little guidance and been told to stop calling up for advice.

Nobody has told me anything at all so its all come as a shock.

I am on Humalog 0.5 units breakfast, eat no lumch or eggs so don't inject, evening is 4-6 units
Long acting is Tresiba 22 units a day.

Any help is appreciated, and I thank you.
 
Hi
I hope someone chips in with advice on Tresiba which appears to be a very long lasting background insulin.
I'm on levemir which I take twice a day.
As a starting point I would cut back on your tresiba 2 units at a time and see if you levels improve a little and take more Humalog with food which again is not one I'm familiar with as I'm on novorapid.

Not much help I'm afraid but either way you appear to be on too much insulin hence the rough feeling so start with the above and hopefully someone on your insulin can give more accurate advice.

Tony
 
Tony337 said:
Hi
I hope someone chips in with advice on Tresiba which appears to be a very long lasting background insulin.
I'm on levemir which I take twice a day.
As a starting point I would cut back on your tresiba 2 units at a time and see if you levels improve a little and take more Humalog with food which again is not one I'm familiar with as I'm on novorapid.

Not much help I'm afraid but either way you appear to be on too much insulin hence the rough feeling so start with the above and hopefully someone on your insulin can give more accurate advice.

Tony
Click to expand...
Thanks Tony.

Yes I have tried that but find if I cut back my Tresiba, I am just too high.

I am also finding the Humalog is taking 4 hours to work and was to told it was because I had had diabetes so long.

All in all, its all been a bit of a disaster.

:arghh:
 
Theres something wrong if its taking 4 hours to work!
The fact you've had diabetes so long is utter hogwash as an explanation.
I've had it 44 years and mine works fine apart from some resistance from time to time which clears itself after a day or so.

I can't think what to say next as it appears your NHS support isn't there and you are on different insulins to me.
Can you change specialist/GP.
I don't see a specialist I just see my GP who basically does what I ask him but if I do need help he points me in the right direction but I do realise its easy for me to say that because I'm on easy street in comparison to you.

I can only wish you well.

Tony
 
Tony337 said:
Theres something wrong if its taking 4 hours to work!
The fact you've had diabetes so long is utter hogwash as an explanation.
I've had it 44 years and mine works fine apart from some resistance from time to time which clears itself after a day or so.

I can't think what to say next as it appears your NHS support isn't there and you are on different insulins to me.
Can you change specialist/GP.
I don't see a specialist I just see my GP who basically does what I ask him but if I do need help he points me in the right direction but I do realise its easy for me to say that because I'm on easy street in comparison to you.

I can only wish you well.

Tony
Click to expand...
 
Hi Tony,

I've had two consultants see me now. The first one dismissed the possibility of me having allergic reactions to two of the insulins I was prescribed and stopped as had allergic reactiosn claiming she "had never heard that before".

This second one who is more senior, is the one who has said that it's not working due to how long I have had it. I have asked for U200 and have an appointment in May to sort that.

To be honest, I am past despair point. I am miles better now but have been so unwell. My kids are fed up of seeing me go from an outgoing happy Mum to a withdrawn one who has put up with nothing but hassle from the NHS and unsupportive family and friends. I spoke to my Mum who said, "Well, you have bene unwell for months now". Well I am sorry she feels that way.

:(
 
Last edited:
Sorry, Tony. I tried to hit the symbol for 'agree' on one of your posts and missed, so hit the 'funny' one. The system doesn't let you make a correction, so now it looks as if I' m an idiot. Apologies !

Metalmama, I've just switched to Tresiba to replace Bovine Lente. It's definitely not plain sailing, but I have been emailing a DSN to get her opinion on what is happening. I was assured that after about four days my BS should be stable. I was sceptical about that and it has turned out I was right. The DSN has now gone on holiday for a week, but I think I now have a fair idea of what is going on. Do you not have the ability to email a DSN ? I only discovered their email addresses were available about 4 weeks ago. It might be worth asking for future reference. I can re-read and refine what I want to say in an email, so it is clearer and more convincing, whereas on the phone it can be easy to miss responding to one of several comments which are inaccurate or that you disagree with. The consultant who has never heard of allergies to insulin makes me think you would have nothing to lose by getting referred to somewhere else.

Do you mind my asking what were the insulins you were allergic to and what were the allergic reactions you experienced ? I have reacted very badly to a number of drugs I was given, including ACE inhiibitors, statins and fibrates. As a result, I am always concerned about trying any new treatment for anything. Of course, all HCPs think I am making a fuss about nothing, but statins lost me my job and ACE inhibitors gave me a gastric ulcer.
 
JMK1954 said:
Sorry, Tony. I tried to hit the symbol for 'agree' on one of your posts and missed, so hit the 'funny' one. The system doesn't let you make a correction, so now it looks as if I' m an idiot. Apologies !

Metalmama, I've just switched to Tresiba to replace Bovine Lente. It's definitely not plain sailing, but I have been emailing a DSN to get her opinion on what is happening. I was assured that after about four days my BS should be stable. I was sceptical about that and it has turned out I was right. The DSN has now gone on holiday for a week, but I think I now have a fair idea of what is going on. Do you not have the ability to email a DSN ? I only discovered their email addresses were available about 4 weeks ago. It might be worth asking for future reference. I can re-read and refine what I want to say in an email, so it is clearer and more convincing, whereas on the phone it can be easy to miss responding to one of several comments which are inaccurate or that you disagree with. The consultant who has never heard of allergies to insulin makes me think you would have nothing to lose by getting referred to somewhere else.

Do you mind my asking what were the insulins you were allergic to and what were the allergic reactions you experienced ? I have reacted very badly to a number of drugs I was given, including ACE inhiibitors, statins and fibrates. As a result, I am always concerned about trying any new treatment for anything. Of course, all HCPs think I am making a fuss about nothing, but statins lost me my job and ACE inhibitors gave me a gastric ulcer.
Click to expand...
 
I've found Tresiba to be a lot better and was put on that to avoid night hypos, which is a concern to me as a single parent. I'm coming in on very good readings, I started this year on 9 Jan but it took awhile to bed in as it were.

How have you found the change from Bovine? I have never felt to unwell. I don't know why but my Bovine Neutral and Isophane just stopped working. I was injecting huge amounts and my readings were so high. I got ketones for the first time in 44 years!

The nightmare started on 21/12 when I saw the community diabetes nurse who couldn't even look my blood meter results up I was told that the dietician was able to do so, even though she was in a senior role.

I was desperately in need of new insulin as mine had stopped working She prescribed me new insulin pens with no needles! All the advice I received could have been done over a phone call. I had to take time off work and my friend who acompanied me, had to take time out also,

The prescrption was sent to my GP on the 22/12 a day after the day the urgent prescription was going to be sent "immediately" as in 21/12. CDN told me I had to wait until 3 Jan to start it and I had Christmas to look forward to, even though I said I couldn't even think about the next day, let alone Christmas as felt so unwell.


It had to be ordered in and arrived in the evening. I rang the covering diabetes nurse on 22/12 morning expressing my desperation to start it as had a problem with my blood sugars running high and had ketones for the first time in 44 years of having diabetes and was told to wait until 3 Jan and on my head be it if I wanted to start this new insulin myself which is what I did as said I could not wait.

I drew the pen insulin with a syringe with no dosage instructions on 23/24/25 Dec as was desperate.

Rang the hospital for some advice as my blood sugars were going all over the place on 28/12, spoke to a lady who said she would pass my details on, I said "If I don't get help, I will die" and was met with "Okay". She said would pass my details onto the emergency team. I had allergic reactions to both the insulins I had been prescribed.

Got a call on Monday 1 Jan. It was the Dr who I was scheduled to see on 8/1, she had never heard of the side effects I had mentioned from anyone. Told her to read the pack instructions, had spent Dec 24 and 25 unable to breathe and my children panicked. She said she could check the Degledec and see if it had similar ingredients and call on 2 Jan. I told her about the pens with no needles and was met with "I cannot comment on that."

She didn't call on 2/1. It was her day off.

Had another call on 2 Jan from her secretary which lasted 1.5 hours. I said I had been left all Christmas and that I had been going downhill for weeks. The lady said she was sorry I had suffered so much and would make sure the Dr would send a prescription and blood form to my GP surgery for 4 Jan as was seeing my nurse then, and get the Dr. to call on 3 Jan when she was back. Told her about the no needle pens and got the same response as from the Dr.

Saw her on 8/1 and started the Degledec Tresiba on 9 Jan but have been left to sort it for myself. I have got two I can see in the team. The other hospitals are too far to get to.

I only have a phone number for the nurses, left three messages over 4 days, nobody rang back even thoguht they say gthey will call within 24 hours. My last call to them was in February.

I got a metallic taste in my mouth from Fiasp and couldn't breathe. Had a weird with Toujeo. Couldn't breathe with that either and it was pretty scary. It's all been so stressful. I think I have an allergy to Glargine, I did post on heree but got no reply so guess I am in the minority.
 
JMK1954 said:
Sorry, Tony. I tried to hit the symbol for 'agree' on one of your posts and missed, so hit the 'funny' one. The system doesn't let you make a correction, so now it looks as if I' m an idiot. Apologies !
Click to expand...



I have to confess I couldn't work out what was funny other than the expression "utter hogwash" so I put it down to that!
No apologies necessary but I know what you mean.
I'm so glad you have contributed to this post as I was beginning to feel out of my depth......

Thank you

Tony
 
I'm allergic to lantus and levemir. My consultant says it's not an allergy to the actual insulin, but rather to the chemical components in the solution. You are less likely to react to an insulin from a different manufacturer that uses a different process, don't know if that helps.
 
Thanks for answering my question, Metalmama. I have found that being able to exchange emails with the lead DSN has been very useful for this first week on different insulin. I managed to get an appointment with my old consultant from about 10 years ago (didn't know he was still there or I would have asked to see him years before !). He referred me to the DSN, but I had to wait a fortnight to see her during which time things deteriorated as I went down with a virus.
I have had some yo-yoing up and down and one sudden massive drop followed by a massive spike, but things are starting to improve now. I clearly don't need as much insulin as they thought, but this is no surprise as I had become much more sensitive to insulin over recent years. I am sticking with Porcine Neutral as that still seems to suit me.

You seem to be on a massive dose of basal, but eating very little carbohydrate. Have you always needed a lot of basal insulin ?
 
JMK1954 said:
Thanks for answering my question, Metalmama. I have found that being able to exchange emails with the lead DSN has been very useful for this first week on different insulin. I managed to get an appointment with my old consultant from about 10 years ago (didn't know he was still there or I would have asked to see him years before !). He referred me to the DSN, but I had to wait a fortnight to see her during which time things deteriorated as I went down with a virus.
I have had some yo-yoing up and down and one sudden massive drop followed by a massive spike, but things are starting to improve now. I clearly don't need as much insulin as they thought, but this is no surprise as I had become much more sensitive to insulin over recent years. I am sticking with Porcine Neutral as that still seems to suit me.

You seem to be on a massive dose of basal, but eating very little carbohydrate. Have you always needed a lot of basal insulin ?
Click to expand...
Sorry for the delay.
Prior to this I was around units basal in the evening and 6 in the evening. I took less of the basal on the new regime and more short and it did not work so well.
I don't understand why it is taking up to 4 hours for my short to work.
It's all quite a challange and the worst thing us that I an unable to get any advice from anyone medically trained and have been told not to call and to wait for my next appointment, so have been "winging it" since February.
 
Metalmama said:
Hi Tony,

I've been given very little guidance and been told to stop calling up for advice.

Nobody has told me anything at all so its all come as a shock.

I am on Humalog 0.5 units breakfast, eat no lumch or eggs so don't inject, evening is 4-6 units
Long acting is Tresiba 22 units a day.

Any help is appreciated, and I thank you.
Click to expand...

Whoa!!!!

Your tresiba versus your humalog is very excessively heavy dose...

You mention feeling awful... but what is a typical days blood results like?

Are you saying you only have max of 7 units a day?

Do you test during night at all??

It really sounds as if your tresiba needs adjusting but unless you can give a days worth of blood readings it will be difficult to be sure...
 
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