How to ask for change of insulin UK

[Silkroad77]

Hello all.
I'm wondering how to go about requesting a change
of insulin when your Diabetes specialist refuses to do so, in the UK.
I take Tresiba and Fiasp.
I'm getting itching, swelling and rashes at my injection sites.
I alternate injection sites all the time!
Low and high blood sugar levels despite same amount of carbs,
same time of eating foods, same amount of insulin,
High blood sugar levels for hours and hours despite taking
insulin, portion and carb control, exercise, eating at the same time ( I always have dinner at 6pm, so nothing to do with when I eat).
But my diabetic specialist only concentrates on the low blood sugar levels, never listening to anything else!
How do I get to request change of insulin as a UK citizen?

Advice would be appreciated.
Thanks

 

[urbanracer]

What does 'diabetic specialist' mean to you? GP, Nurse or Endocrinologist ?

In my area, GP's don't get involved with insulin beyond signing repeat prescriptions. When I changed insulin I was referred to the hospital's endocrinoligist.

As far as I am aware, you can't really go higher than an Endo' in the UK. If you are talking about an Endo' then you might be able to request to be seen by a different Endo' or at a different hospital but that may mean you having to travel a fair distance depending on your circumstances.

Which insulin is casuing you problems?

 

[markpj31]

Speak to your community diabetes nursing team.

It's your health, and you aren't happy. They are there to provide a service to you.

As mentioned above by urbranracer - Doctors seem to have limited control of how/what insulin you use or how its managed.

 

[In Response]

Speak to your community diabetes nursing team.

It's your health, and you aren't happy. They are there to provide a service to you.

As mentioned above by urbranracer - Doctors seem to have limited control of how/what insulin you use or how its managed.

I am not sure what you mean by the "community diabetes nursing team" but, typically, an endocrinologist (doctor, not nurse) needs to be involved with the change in treatment for someone with Type 1 diabetes.

 

[Hopeful34]

You could try putting it in writing to whoever you see re diabetes.
Apart from the rashes and itching, it sounds like it might be a good idea to check that your basal level is right if you're having highs for hours on end. If it's ok, maybe check your insulin to carb ratio, or changing how long before your meal you take your insulin.
Having said that it can be quite normal to eat the same thing 2 days running and get different blood sugar levels. So many variables affect levels, not just food and insulin.

 

[Seacrow]

You're on insulin, so you should be being seen by a hospital diabetes clinic. If your doctor is a registrar, you can ask to be seen by a different registrar or consultant. Unfortunately, the person you would ask to see somebody else is the doctor who is already being obstructive.

You are not alone, I react badly (like you) to Lantus and Levemir, and like you my doctor liked my blood glucose levels and didn't want to change. We went through various antihistamines until I got fed up and refused to take basal insulin. Then she took me seriously and tried to fix the problem.

If I was in your place, I'd fix a phrase in my mind 'I want to change my insulin' for example. Next time you see the doctor, every time he says something not related to changing insulin, repeat 'I want to change my insulin'. It's juvenile and highly irritating (you run the risk of p'o the doctor for good), but it shows you're determined. That's the best I can think of.

 

[oldgreymare]

Pragmatically you need to get your current "team (endo, GP, nurse)" onside. Did you ever get similar allergy symptoms when using other insulins? Is it both Tresiba and Fiasp injection sites that give you these symptoms? Do you change your needles for every single injection? Do you drive for your job (could be why your specialist is so hypo focused?)

Have you tried a Libre CGM (or using other monitoring) to analyse in detail how you respond to Fiasp in terms of BG control - can you say whether Fiasp has improved your control, no difference or worsened it? What worries you the most - the injection site irritation or worsening BG control - use answers to the above to frame your ongoing questions re your care.

Also I think every T1 can relate to the fact that regardless of how we aim to control our BGs, these can very often randomly fluctuate. Mine only stay mostly in range if I do NO exercise, eat one small very low to zero carb meal a day, don't get mentally stressed - interestingly I needed to isolate for Covid with mild symptoms last month - some of my best flatlining BG stats with no "sick day increases" needed. Now back to "normal" life and readings are a lot more random.

 

[markpj31]

I am not sure what you mean by the "community diabetes nursing team" but, typically, an endocrinologist (doctor, not nurse) needs to be involved with the change in treatment for someone with Type 1 diabetes.

That is the name of the local diabetes related team near me. Basically a nurse goes through with me every through weeks to make sure my numbers are good, what dose is best to use and pretty much any concerns I have with anything diabetes related. They prescribe the medication and adjust/change it accordingly.

 

[markpj31]

Having said that it can be quite normal to eat the same thing 2 days running and get different blood sugar levels. So many variables affect levels, not just food and insulin.

Indeed. I have been eating the same thing for 2 1/2 months and that statement is very true.

 

[Circuspony]

When I started reacting to lantus I didn't ask I demanded to get changed. Proper dig my heels in and refuse to leave the room demand.

 

[JMK1954]

I would ask to be referred to a consultant, as it is clear that whoever you are talking to isn't actually listening, judging by what you have told us.