FML! Cortisol and T1D and other autoimmune stuff

[PeteM2020]

Morning all.

I'm 53 year old male, suffered with alopecia universalis and worsening 20 nail dystrophy since teen years, started getting T1D symptoms end of 2019, and weight plummeted from 83kg to 70kg during February alone. It was this sudden weight loss that eventually made me go to GP at beginning of March this year. Ended up being sent to A&E as so ill and received diagnosis of T1D which was a bit of a shock but also not unexpected.

Since starting treatment with Levemir and Novorapid I have felt so much better. However, I've been going hypo during the night, and also at times during the day when working. I'm a borehole driller and work is very physical involving lots of heavy lifting and long hours. I also tend to go hypo when concentrating on writing quotes, or when my wife starts blabbing on at me about stuff, and other get irritable and frustrated with other people including the guy I work with. I get tired quickly, and often get a bit confused about what I'm doing. And have Trouble focusing on things that need to get done.

Adjustments have been made to by bolus insulin as BG levels were falling really fast after meals. Also, after phone appointment with my consultant on Wednesday, have just reduced evening basal to half what it was to try and get rid of overnight hypos.

My consultant interrogated me for an hour on the phone. Having looked at by blood test results she is now booking me on for 9am blood test for cortisol. I'm worried that this might be going down the route of Addison's given my other autoimmune stuff! And even though I've not even had the cortisol test yet, I can't put this out if mind and I can't stop reading about it!

 

[Pumper_Sue]

And even though I've not even had the cortisol test yet, I can't put this out if mind and I can't stop reading about it!

You can live and function normally with Addison's disease. Just remember to take your steroids and all is fine 🙂

 

[PeteM2020]

You can live and function normally with Addison's disease. Just remember to take your steroids and all is fine 🙂

Cheers Sue. I just hate the idea of being on prednisolone or whatever. About 15 years ago I was put on 80mg/day of this in an attempt to suppress my immune system to see if AU and nail dystrophy could be improved. But it made me gain so much weight and I felt dreadful!

 

[Pumper_Sue]

Cheers Sue. I just hate the idea of being on prednisolone or whatever. About 15 years ago I was put on 80mg/day of this in an attempt to suppress my immune system to see if AU and nail dystrophy could be improved. But it made me gain so much weight and I felt dreadful!

Ah but the difference is that the steroid you are prescribed for Addison's only replaces what your own body does not produce. Thus you do not gain weight 🙂 Some use pred and HC and others just use HC (hydrocortisone) So if you had pred for instance the very most you would have would be 6mg

 

[PeteM2020]

Ah but the difference is that the steroid you are prescribed for Addison's only replaces what your own body does not produce. Thus you do not gain weight 🙂 Some use pred and HC and others just use HC (hydrocortisone) So if you had pred for instance the very most you would have would be 6mg

Thank you for your reasurances. I feel a bit better about it all now!

 

[Pumper_Sue]

Thank you for your reasurances. I feel a bit better about it all now!

Glad to hear it 🙂 I was diagnosed with Addison's back in 2002 so have had a bit of experience with it.
If you do have Addison's, like diabetes you have to plan a head making sure you have extra supplies with you just in case of need but otherwise no difference in life at all really.

 

[everydayupsanddowns]

Sorry to hear about the challenges you are facing managing your diabetes alongside your physical work @PeteM2020

Glad that our star Addison’s specialist has been able to give you some reassurance .

Just wondering whether you have had much help and support in tweaking your own doses day-to-day? Because insulin needs ebb and flow week to week and month to month, and along with your demanding and physical work, I think it will be next to impossible for your consultant to effectively manage your doses because of the inevitable time in between appointments.

Have you done DAFNE, BERTIE or a similar structured education course? There are online versions available (free!) if the current circumstances make attending in person tricky (links in the Useful Links thread).

 

[PeteM2020]

Sorry to hear about the challenges you are facing managing your diabetes alongside your physical work @PeteM2020

Glad that our star Addison’s specialist has been able to give you some reassurance .

Just wondering whether you have had much help and support in tweaking your own doses day-to-day? Because insulin needs ebb and flow week to week and month to month, and along with your demanding and physical work, I think it will be next to impossible for your consultant to effectively manage your doses because of the inevitable time in between appointments.

Have you done DAFNE, BERTIE or a similar structured education course? There are online versions available (free!) if the current circumstances make attending in person tricky (links in the Useful Links thread).

Many thanks for your message. I have had phone conversations with my DN about making adjustments to doses, but hadn't really need to make any and was just sticking to 10 and 15 Levemir and 8, 8, 10 Novorapid which was working really well from March through to July.

I didn't really think much about adjustments. I was doing farm work for 7 weeks during lockdown when my own work had stopped, and feeling really chilled out and happy. My monitoring was by finger prick tests using an Areo2 monitor, and I very rarely saw any low numbers as I was always eating and drinking loads of apple juice from the farm. Everything looked brilliant.

It's since then though that my own work has really started to kick off, and it's been both physically and mentally exhausting, not helped by the fact that I've been away from home Sunday evening to Friday evening. Really stressful at times too. So it's been a massive change.
Also, since July I have been using a Libre monitor. I was able to get this on account of carrying out dirty work outdoors which causes difficult doing finger pricks. Of course the Libre monitor means I now see the effect of the work I'm doing and these huge dips in glucose are really apparent. I ended up with over 20% of my time at less than 3.9mmol/l a couple of weeks ago! And confirmatory finger pricks were pretty close to the monitor readings in general. This isn't ideal given that I hope to get my lorry licence back! A large portion of my hypo time was overnight and so I have halved evening Levemir to 7.

I was pointed in the direction of the courses you mentioned and will make a proper effort to do them! Also, I've just today halved my morning Novorapid to see if that helps me get through to lunchtime.
There's a lot of learning to do.
Thanks again.

 

[trophywench]

I've had T1 for 48 years Pete - and reckon I learn summat new every day.

It IS a marathon, NOT a sprint.

 

[PeteM2020]

Glad to hear it 🙂 I was diagnosed with Addison's back in 2002 so have had a bit of experience with it.
If you do have Addison's, like diabetes you have to plan a head making sure you have extra supplies with you just in case of need but otherwise no difference in life at all really.

Sorry I never updated here after getting test results back. No Addisons I'm pleased to say. Just think changes in routine and being in fairly early days causing fluctuations in insulin requirements and glucose levels. Not having so many hypos now!

 

[everydayupsanddowns]

Sorry I never updated here after getting test results back. No Addisons I'm pleased to say. Just think changes in routine and being in fairly early days causing fluctuations in insulin requirements and glucose levels. Not having so many hypos now!

Nice to hear from you again @PeteM2020

Glad things are going well for you.