Newly diagnosed with Type 1 (and Hashimoto’s) at 54

[DeeM]

Hello. I am still trying to get my head around this sudden change in my life. I was away from home visiting family in Australia when I started experiencing the classic symptoms, and was initially diagnosed with Type 2 by the GP. But then I quickly deteriorated into ketoacidosis and I was very lucky that the hospital ran and processed the antibody tests very quickly, and I was told it was Type 1 and put on insulin. I cut my trip short and am glad to be home safe in the UK, just starting on the journey of learning how to manage this condition going forward.
I was also told that I have Hashimoto’s disease (affecting my thyroid) and that both this and the diabetes are related to an autoimmune issue that may be genetic. Looking at the info on here I am wondering if this means I might have the Type 1.5 LADA version? No one has mentioned this to me so far, but I still have lots of conversations with doctors ahead of me, I guess. I am looking forward to learning more from everyone here on the forum.

 

[SB2015]

Hello. I am still trying to get my head around this sudden change in my life. I was away from home visiting family in Australia when I started experiencing the classic symptoms, and was initially diagnosed with Type 2 by the GP. But then I quickly deteriorated into ketoacidosis and I was very lucky that the hospital ran and processed the antibody tests very quickly, and I was told it was Type 1 and put on insulin. I cut my trip short and am glad to be home safe in the UK, just starting on the journey of learning how to manage this condition going forward.
I was also told that I have Hashimoto’s disease (affecting my thyroid) and that both this and the diabetes are related to an autoimmune issue that may be genetic. Looking at the info on here I am wondering if this means I might have the Type 1.5 LADA version? No one has mentioned this to me so far, but I still have lots of conversations with doctors ahead of me, I guess. I am looking forward to learning more from everyone here on the forum.

Welcome to the forum @DeeM from another late starter. Very pleased that your T1 was picked up and you were put onto insulin. I know that I felt instantly better once injecting, just lots to learn very quickly about day to day living.

LADA is basically a slow onset T11, sometimes referred to as T1.5.
It is treated in exactly the same way as T1 so I don’t worry about the distinction between these.

Other autoimmune diseases are more common once you have one, so Thyroid issues are more common amongst those with T1/T1.5.

There is a lot to get your head round at the start but it does become just part of your ‘new normal’ life.
Fire away with any questions that arise.

 

[Cherrelle DUK]

Hi DeeM, welcome to the forum.

It is a lot to get your head around at first but I'm glad that you've got the right diagnosis and can begin making lifestyle changes.

Yep, speak with your GP as much as needed because how you manage diabetes may differ depending on your other health concerns.

We've got lots of info on the forum so do feel free to have a look around the boards and on the main site and let us know if we can help in any way.

 

[DeeM]

Thank you both for your replies . It has already been a huge help looking around the forum.
My GP practice is so overstretched at the moment that I don’t think it will be easy to get lots of time with them, but the community diabetes team has been fantastic and I am seeing them again next week.
Unfortunately I now have Covid as well (for the first time) - no doubt picked up on the long haul flight back.

 

[SB2015]

Sorry to hear that you now have COVID @DeeM I hope that you symptoms remain mild.

When you are poorly it makes managing your levels more difficult, so keep a watch on your levels, and if high check for ketones. Has you team taught you about correction doses? If not it would be worth talking to them about these, as it will enable you to bring your levels down if necessary, which All helps with the recovery.

Let us know how you get on.

 

[DeeM]

Sorry to hear that you now have COVID @DeeM I hope that you symptoms remain mild.

When you are poorly it makes managing your levels more difficult, so keep a watch on your levels, and if high check for ketones. Has you team taught you about correction doses? If not it would be worth talking to them about these, as it will enable you to bring your levels down if necessary, which All helps with the recovery.

Let us know how you get on.

Thanks @SB2015. I’m so early in the journey that I’m still just on the basal dose while they check my patterns. I’m doing lots of tests and trying to record everything I eat etc. I haven’t been completely ketone free since the original ketoacidosis, but the level is still under 1 and my glucose is staying fairly steady too, thank goodness.

I was told I would probably have this ‘honeymoon’ period for a little while - possibly my pancreas is still managing to make a bit of its own insulin?

I would be really interested to hear if other people had this honeymoon effect and how long it lasted? I am not a very practised user of forums - should I be posting that as a separate question?

 

[SB2015]

I would be really interested to hear if other people had this honeymoon effect and how long it lasted? I am not a very practised user of forums - should I be posting that as a separate question?

I was diagnosed at the age of 53, very similar to you.

I definitely had a honeymoon period. I started straight onto basal/bolus. It went on for a good year and I found it led to me gradually increasing my doses. Even 14 years on I have a tiny amount of insulin being produced, and I reckon those pesky beta cells sit around and then wait for the most inconvenient opportunity to join in again!!

You mention the community diabetes team. Does this include a Diabetes Specialist Nurse (as opposed to a nurse who has a special interest in diabetes)? It is worth working with the specialist teams at the start as they will be far more used to supporting those with T1. I know that in some areas the DSNs do go out to the community practices.

I have learnt so much about my management from others on here, so just keep the questions coming.

 

[DeeM]

I was diagnosed at the age of 53, very similar to you.

I definitely had a honeymoon period. I started straight onto basal/bolus. It went on for a good year and I found it led to me gradually increasing my doses. Even 14 years on I have a tiny amount of insulin being produced, and I reckon those pesky beta cells sit around and then wait for the most inconvenient opportunity to join in again!!

You mention the community diabetes team. Does this include a Diabetes Specialist Nurse (as opposed to a nurse who has a special interest in diabetes)? It is worth working with the specialist teams at the start as they will be far more used to supporting those with T1. I know that in some areas the DSNs do go out to the community practices.

I have learnt so much about my management from others on here, so just keep the questions coming.

Oh wow - a whole year. That is great.

Yes, I went up to the hospital and saw a Diabetes Specialist Nurse - apparently he is famed in the area for being brilliant . He has asked the GP to make an endocrinology referral, and in the meantime I believe he will be meeting with me regularly and will arrange for other appointments eg he mentioned a dietician/ nutritionist, and a clinical psychologist if I need help with the mental health side of things. I’m guessing he will also sort out the various foot and eye checks too (that I have learned about via the Learning Zone)?

I am a bit worried about my eyes because I have had blurred vision for months, and I am straining to read even with the new reading glasses I got from the optician recently. The nurse did say it takes months for the vision issues to settle, but it’s quite debilitating. Especially now that I need to read all those tiny food labels!!

I don’t know if I should go back to the optician or wait for the diabetic eye check first?

 

[SB2015]

It is common to get blurred vision at diagnosis due to the high levels of glucose. I still notice that if my levels go high. Mine took some time to settle down after diagnosis, so try to be patient. A good optician will not change a prescription at this stage in your diabetes journey. You could get some cheap reading glasses to cover this period.

It sounds like you have an excellent team on hand and are in good hands With your DSN. My Practice sorted out foot checks which happen annually, and I was registered with the Diabetic Retinopathy Screening scheme which is another annual check We get. There will be a full annual ‘MOT’ as well as interim appointments as necessary. I feel like it is one of the bonuses of having Diabetes. Some of the checks went off kilter during COVID, like so many other things, but they are catching up, and as a newbie you are likely to get those done sooner rather than later.

I am glad that you have such good support around you.

 

[DeeM]

A good optician will not change a prescription at this stage in your diabetes journey. You could get some cheap reading glasses to cover this period.

Thanks. That sounds like a good plan.

 

[DeeM]

It is common to get blurred vision at diagnosis due to the high levels of glucose. I still notice that if my levels go high. Mine took some time to settle down after diagnosis, so try to be patient. A good optician will not change a prescription at this stage in your diabetes journey. You could get some cheap reading glasses to cover this period.

It sounds like you have an excellent team on hand and are in good hands With your DSN. My Practice sorted out foot checks which happen annually, and I was registered with the Diabetic Retinopathy Screening scheme which is another annual check We get. There will be a full annual ‘MOT’ as well as interim appointments as necessary. I feel like it is one of the bonuses of having Diabetes. Some of the checks went off kilter during COVID, like so many other things, but they are catching up, and as a newbie you are likely to get those done sooner rather than later.

I am glad that you have such good support around you.

This is all so reassuring - thanks. I was really thrown when the GP practice initially wanted to make me wait for weeks for any kind of appointment, but then once they made the referral to the specialist nurse team it all seemed to click into place.