First appt with consultant

[4mum_]

Evening all.

Briefly I was diagnosed t1 in May via DKA at 55. I've had various appts with my DSN and dietician at the hospital. At the end of May I had a ct scan with dye. I still haven't had the result but trust me I've been chasing it.

I finally managed to get an appt for 9am tomorrow with the registrar . As it's the First, any suggestions what I should be asking? Is it a silly question to ask 'what happened to me' and the treatment I was given for the 6 days in hospital with the DKA?

Many TIA.

 

[Juicyj]

Hi @4mum_ Honestly - no question is too silly, they are there to help you and give you answers. I found for the first few years after I was diagnosed that I would write lists of questions, i'm sure now some of them would appear daft to me, but it's important to get answers and more importantly to get 'all' your questions answered, so take a notepad and I hope you come away feeling satisfied that they have done their job well and put your mind at rest

 

[donnellysdogs]

What was the ct scan for?

Who organised it, ask how to get results? And why the scan was done?

 

[4mum_]

Thanks both of you. I've been chasing these results since May - the Secretary assured me the registrar will 'talk me through them'. I'll begin a list later but just wanted a few clues of what to ask.

 

[Rachox]

My teenage daughter went to the GP by herself the other day, she wrote notes in her phone (new age equivalent of a note paid!) and just handed it to the GP for him to read it. She said he didn’t bat an eyelid

 

[4mum_]

I wrote a list of symptoms on my phone and handed it to the gp when she sent me to hospital with DKA. I'm happy to go with a list but need suggestions of what to ask do I don't waste the opportunity.

 

[EllieM]

I'm shocked that you were diagnosed t1 in May and are only getting your first appointment now. Presumably you're on insulin if you're t1?

 

[4mum_]

I've seen my hospital DSN 3 times, and also my hospital dietician. And the DSN at the gps. Yes I'm on novarapid, lantus and metformin and generally have had good control with the regular hypos (DSN reduced lantus which helped) and the odd crazy day when it's high regardless what you do. Guess you've all been there! I'm going to mention the timescale!

 

[donnellysdogs]

I would ask:

Why delays etc ref ct scan results and why it was done?

What diabetes you have-and how they have reached that decision...

Basically what steps now and to have cotact name and numbers given to you so you dont go through hassle as you have...

What do they see as your targets to avhieve, and how soon..

Without knowing mire details of knowing what treatment you are on, how diagnosed and what your levels are running at, we cant really give questions that we would ask, but jyst a generalisation...

 

[4mum_]

I understand that you can't ask questions as you dont know whats what for me but I certainly appreciate your suggested questions.

I've been able to contact my hosp DSN Any time and she is helpful. It has been rather annoying how I have had to chase foe the result. The DSN said I was on the waiting list to see the consultant and there were delays but then she suggested I ask my gp as they would have had a copy. When I asked they disnt have anything. By chance I was at Hospital with my daughter so went into the Centre and got the consultant secretary's number and phoned her. As it is she has squeezed me in by double booking me and told me to come later and the stated time. I think I will go at the appt time to be on the safe side!!

 

[donnellysdogs]

It depends what your insulin regime is, your results and if you sre going on a dafne course, how many hypos you have, do you drive, have you been told about dvla requirenents, card for free scripts, getting enough test strips..

 

[4mum_]

I'm sorted with the DVLA and 3 year licence. I have a medical exemption card. I order what I need when I need it via an online system with the gps and they have been good if I ask for double etc. The DSN worked out that my hypos were a similar time so reduced my lantus and that has made a difference. I get I make the rare mistake when I may over calculate my insulin requirements and that drops me but I use books, apps, online and packets so I do try hard to work out my requirements. DSN suggested DAFNE after a year from d-day. I'm happy to do that but not sure how I can fit it in on the days I childmind my grandchildren. Will worry about that nearer the time!

 

[EllieM]

It sounds like you've done very well at understanding/controlling the illness. Are you sure you're T1 (metformin is normally a T2 drug though they do prescribe it for T1s as well)?
Good luck with the appointment, and definitely make a list first.

 

[Fairygodmother]

Hi 4mum, it sounds as though you’re doing really well!

It’s a shame that you’ve had to wait so long for an appointment with a consultant - a sign of the times? I was told that I was lucky to be on a consultant list here in the SE as one of the clinics has no more room.

There are a number of things that should be covered in an appointment with a consultant. You’ll need to have blood test results for them to see, so your DSN, or the hospital, should ensure that this is done ahead of the appointment. It should cover Hba1c, kidneys, lipids, which is chlorestorol, and maybe some more personally related things if appropriate such as thyroid/anaemia. You should also have a wee test for kidney function.
The results will provide a starting point for any discussions and/or questions. You should also have your eyes tested once a year for retinopathy. This involves an appointment to take a retinal image. Make sure that this is set up for you. Likewise tests for nerve sensitivity in your feet, and of course your blood pressure.
Your DSN may already have done some of this but the consultant will need to know the results.
It seems that the insulin and metformin are working well together. You might want to ask how long you should expect to be taking metformin and why it was initially included as part of your treatment. The answer to this could also lead to discussion and questions.

You could also check with the DSN, and the consultant, that you’ve been put forward for a Dafne course, some of the waiting times for these are quite long. You say that you’re not sure how to fit in a Dafne course and childminding grandchildren. I’m a grandmother too, and in most things children and grandchildren come first. But not this. You want to be fit and healthy for many years to come so you can enjoy their growing up. The courses run either on one day a week or for a whole week and if you give advanced notice of when you’ll be doing one then alternatives can be found for childminding. It’s not selfish, it’s sensible.

 

[4mum_]

It sounds like you've done very well at understanding/controlling the illness. Are you sure you're T1 (metformin is normally a T2 drug though they do prescribe it for T1s as well)?
Good luck with the appointment, and definitely make a list first.

Def t1. They treated my DKA as t2 due to my age but it didn't work. Once they did t1 it made a difference. Plus my GAD antibodies came back at over 18 thousand!

 

[4mum_]

Hi 4mum, it sounds as though you’re doing really well!

It’s a shame that you’ve had to wait so long for an appointment with a consultant - a sign of the times? I was told that I was lucky to be on a consultant list here in the SE as one of the clinics has no more room.

There are a number of things that should be covered in an appointment with a consultant. You’ll need to have blood test results for them to see, so your DSN, or the hospital, should ensure that this is done ahead of the appointment. It should cover Hba1c, kidneys, lipids, which is chlorestorol, and maybe some more personally related things if appropriate such as thyroid/anaemia. You should also have a wee test for kidney function.
The results will provide a starting point for any discussions and/or questions. You should also have your eyes tested once a year for retinopathy. This involves an appointment to take a retinal image. Make sure that this is set up for you. Likewise tests for nerve sensitivity in your feet, and of course your blood pressure.
Your DSN may already have done some of this but the consultant will need to know the results.
It seems that the insulin and metformin are working well together. You might want to ask how long you should expect to be taking metformin and why it was initially included as part of your treatment. The answer to this could also lead to discussion and questions.

You could also check with the DSN, and the consultant, that you’ve been put forward for a Dafne course, some of the waiting times for these are quite long. You say that you’re not sure how to fit in a Dafne course and childminding grandchildren. I’m a grandmother too, and in most things children and grandchildren come first. But not this. You want to be fit and healthy for many years to come so you can enjoy their growing up. The courses run either on one day a week or for a whole week and if you give advanced notice of when you’ll be doing one then alternatives can be found for childminding. It’s not selfish, it’s sensible.

Hi. I'm not avoiding the DAFNE course, just not sure how to manage it. I also work 3 days a week so can get time off from them! 1 day a week seems better in that respect. Lol I'm happy to do it as it will help me understand more.

I saw your message after the appt. They were pleased with how/what I'm doing. I handed him a list of 2 a4 sides of questions and he said I was the first to do that even though people are suggested to do it. And he went through them all.

I've lost 1 1/2 stone since May through my changes in diet but basically cutting portions and the naughty stuff. He was happy with that. I'm now 70kg so still well covered.

I had a hba1c done at the gp a while ago so he had that result but sent me off to get another and for various other bits as I left.

My c pep result leans towards t2 but he said taking all the other results into consideration it was probably part of the honeymoon so that will be done again.

I've had a retinopathy test done because my eyes were my worry. I only have reading glasses at 1.5 but the DKA sent them to 7 and I couldn't see a thing. Fortunately I'm back as I was.

Thank you and everyone who recently contributed suggestions, it really helped me this morning. Xx