Any type 1s with Addisons?

[Naybley]

Hello all,
Just interested really if there is anyone in a similar position to me.
I was diagnosed with type 1 and Graves' disease at the age of 16 and a year and a half ago was diagnosed during my second pregnancy with Addison's disease. I was once told I was an endocrinologists dream!!
I started on a pump in February (which is awesome) and am starting to try and get a CGM on the NHS.
Addisons in itself is not too tricky but pair it with type1 and it's a nightmare. For those who don't know, autoimmune Addison's is where you're adrenal glands are attacked and stop producing cortisol so I need to be on a replacement dose of hydrocortisone and fludrocortisone for life. There is a lot of self medicating like type1 diabetes as my cortisol requirements change depending on stress levels, weather and illness and I also have to carry an emergency injection kit incase of trauma without which I will go into shock very quickly. My endo team were very glad I was diagnosed during pregnancy as this disease can go undiagnosed for a long time and the stress of childbirth with out steroid cover would have killed me.
The interaction between the diabetes and Addisons is hard (which is why I'm hopeful for the CGM) Too little hydro leaves my blood sugars low, too much sends me high. Also my DSN has never seen basal patterns like mine either as it mirrors my tablet regime as opposed to the natural curve of cortisol that most people have.
I would love to find someone to compare notes with...

 

[azure]

Hi @Naybley

I'm going to tag @CarbsRok for you. There are a few people with Addisons here, so keep checking back.

 

[CarbsRok]

Hi Nabley,
I doubt you will get a CGM if your CCG is as anal as mine (Cornwall) I was told that there were plenty of type 1's who took steroids thus I was no different than any other type 1 and as an added bonus I was told that if they gave me one then it wasn't fair on anyone else as no one in the CCG had a CGM.

Your first step is to get a pump as this makes life so much easier, I found using HC only for Addison's was not working for me so I use a combination of Prednisolone and HC.
Also look around for private funding for your CGM, this is what I did. Dexcom is the best CGM to have so if you can get a pump then go for the Animas Vibe this will save you money as the pump has a built in receiver for the Dex.

Oops just reread your post you already have a pump

 

[Naybley]

Hi Nabley,
I doubt you will get a CGM if your CCG is as anal as mine (Cornwall) I was told that there were plenty of type 1's who took steroids thus I was no different than any other type 1 and as an added bonus I was told that if they gave me one then it wasn't fair on anyone else as no one in the CCG had a CGM.

Your first step is to get a pump as this makes life so much easier, I found using HC only for Addison's was not working for me so I use a combination of Prednisolone and HC.
Also look around for private funding for your CGM, this is what I did. Dexcom is the best CGM to have so if you can get a pump then go for the Animas Vibe this will save you money as the pump has a built in receiver for the Dex.

Oops just reread your post you already have a pump

Thanks for your reply. Your CCG sounds lovely (not!!)
My consultant said its not impossible so we'll see what happens and I'll let you know if I get anywhere.
The pump is fab- not sure how I coped without it really. I'm on the Medtronic 640G I think and had two weeks of an integrated CGM and it was awesome. You can automatically suspend insulin if it drops and the alarms are really good.
I was really sad when I had to give it back.

How did you find the change to pred? And if you don't mind me asking what doses you are on? Have you heard they have produced a modified release hydrocortisone now? They are looking into whether it should be recommended for Addisons as it gives an even curve on only one tablet. I find getting up in the morning before my first tablet has kicked in really hard to the point of being really dizzy and nauseous in the shower. I should set my alarm earlier to take it but that extra 30 mins of sleep is so precious!!

 

[CarbsRok]

Thanks for your reply. Your CCG sounds lovely (not!!)
My consultant said its not impossible so we'll see what happens and I'll let you know if I get anywhere.
The pump is fab- not sure how I coped without it really. I'm on the Medtronic 640G I think and had two weeks of an integrated CGM and it was awesome. You can automatically suspend insulin if it drops and the alarms are really good.
I was really sad when I had to give it back.

How did you find the change to pred? And if you don't mind me asking what doses you are on? Have you heard they have produced a modified release hydrocortisone now? They are looking into whether it should be recommended for Addisons as it gives an even curve on only one tablet. I find getting up in the morning before my first tablet has kicked in really hard to the point of being really dizzy and nauseous in the shower. I should set my alarm earlier to take it but that extra 30 mins of sleep is so precious!!

The modified release HC is already in use for some people slight problem it costs about £200 for 28 day supply, so not many CCG's will fund that.

I use 5 pred and 5 HC each morning plus 1mcg fludrocortisone. If you are on just HC you should be having at least 20mg of HC plus the fludrocortisone most people function better on 25 though. I found the change from reading info on the net and knew that the HC wasn't working for me so asked my GP to change it for me. I do not chop and change my dosage except for surgery, or being very unwell, messing with the dosage is not a good idea.

 

[niccidoodle]

Hi Nabley,
I doubt you will get a CGM if your CCG is as anal as mine (Cornwall) I was told that there were plenty of type 1's who took steroids thus I was no different than any other type 1 and as an added bonus I was told that if they gave me one then it wasn't fair on anyone else as no one in the CCG had a CGM.

Your first step is to get a pump as this makes life so much easier, I found using HC only for Addison's was not working for me so I use a combination of Prednisolone and HC.
Also look around for private funding for your CGM, this is what I did. Dexcom is the best CGM to have so if you can get a pump then go for the Animas Vibe this will save you money as the pump has a built in receiver for the Dex.

Oops just reread your post you already have a pump

Hi i have adrenal insufficency type 1 diabetes hypocalcemea graves disease though im now hypothyroid after a full thyroidectmy and ulcerative colitis .anyway i am having v frequent hypos despite taking 20mg hydro and reducing my insulin a lot .so am wondering how would i go about trying to get private funding for a cgm? Hypos make me feel not right eg dizzy snd exhaused headachey etc for hours after.