Author Topic: Anyone here have Addison's Disease?  (Read 1071 times)

Fiz

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Anyone here have Addison's Disease?
« on: 15 Jun 2020 04:27PM »
I'm newly diagnosed  and struggling to come to terms with the lifelong condition especially being on steroids for life. 

Apart from a normal blood test showing my cortisol was 84,  I haven't had any further tests yet. Or been seen by Endocrine. Just a diagnosis by telephone and an instruction on what dose of steroids to take. And now I am left with a ton of questions and no one to ask. 

Clinics haven't re-opened yet post lockdown.

Sunny Clouds

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Re: Anyone here have Addison's Disease?
« Reply #1 on: 17 Jun 2020 12:17PM »
I don't have it but I thought I'd offer a hug.  New conditions are tough enough without knowing others with them for info, advice and support.

>bighugs<
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Anyone here have Addison's Disease?
« Reply #2 on: 02 Jul 2020 08:13AM »
>bighugs< thank you sunny I really appreciate it. 

The Endo phoned me Thursday and told me my normal cortisol levels are very low still. Although my cortisol did rise from having the artificial ACTH text to stimulate the adrenal gland so I do have some responses to infection which is good news. 

They're now wanting to check my pituitary gland so more blood tests plus an MRI scan with contrast dye then we'll see what the results of those go. I'm not fazed by MRI scanners which is helpful..

Frances

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Re: Anyone here have Addison's Disease?
« Reply #3 on: 02 Jul 2020 01:12PM »
My Son Ryan Has Secondary Addisons and has to take extra cortisol.    He has to keep an emergency injection with him at all times as he can lose conenceness easily needing a jab. We have been very lucky as even though he has been diagnosed for over 15 years , We can recognise the symptom of it so can stop it before it gets critical. Just realized that his cortisol is due and the little puppy goes back wards and forwards between his door and me as if she know I need to get his meds. 
My little alarm. She knows if he fits in the next room even when I am in my room  She will come and get me, Bless her she is only 8 months old.

Fiz

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Re: Anyone here have Addison's Disease?
« Reply #4 on: 18 Jul 2020 07:59AM »
One of the people in the Addison's Facebook support group has an assistance dog who alerts her to when her cortisol is low and she's needing to updose quickly. I find these kind of medical assistance dogs amazing.

I've been in hospital in adrenal crisis and have been discharged with two emergency injection kits, one to keep in the car and one for the house. The paramedic was with me super fast this time but you can't rely on that so hopefully now I can act and potentially save my own life. And I have ordered a couple of these for the kits so that if anyone came across me in crisis people would know what is happening. 

https://www.etsy.com/uk/listing/604421038/medical-alert-pouch-epipen-inhaler-pouch?utm_source=OpenGraph&utm_medium=PageTools&utm_campaign=Share

Frances

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Re: Anyone here have Addison's Disease?
« Reply #5 on: 18 Jul 2020 05:12PM »
Just had a thought Ryan also wears a bracelet listing all of his Illness's and who to contact me, also 999 . Although he never goes anywhere without his emergancy injections. He has just come in and says one of his first symptoms of an attack is feeling as if he is going to burst into tears.    He has been diagnosed since 2005 and we have been lucky and have managed to spot the symptoms in time to give extra large dose orally, Thus avoiding having to give the injection
So except for once before he was diagnosed has never landed in Hospital.  You will most likely find you too learn to recognize the symptoms early enough to give extra meds (Cortisol)and save the Crisis. Just say if we can be of any help .

Fiz

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Re: Anyone here have Addison's Disease?
« Reply #6 on: 19 Jul 2020 11:49AM »
I had a horrendous night last night with low Cortisol symptoms and have updosed today. The tapering down regime the hospital discharged me with was just too fast. I'm going to go back to the dose I was on on Thursday which was when my symptoms were last stable and stay at that dose for a couple of days before creating my own tapering down dosage table never dropping more than 2.5mg every three days. This advice from the Addison's support group. The low Cortisol symptoms haven't gone today but are bearable. I just need to updose enough to prevent crisis.

I have ordered a medical bracelet which must be coming from abroad as it is due here towards the end of August. All bracelets originating from the UK were unaffordable. Medic Alert the "official" original product insist on membership which costs £32 per year on top of the cost of the jewellery! 

So much to learn when you have a new disease and I am feeling pretty rough today. Hoping that today's increased doses will get me back on an even keel sooner rather than later.

Thanks Frances.  >hugs<

Sunshine

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Re: Anyone here have Addison's Disease?
« Reply #7 on: 19 Jul 2020 12:05PM »
 >bighugs<  >bighugs<  >bighugs<

Frances

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Re: Anyone here have Addison's Disease?
« Reply #8 on: 19 Jul 2020 05:35PM »
Just had a thought. Rys pituitary gland really doesn't work at all. Also Mine is not good caused numorous Miscaridges when I was younger , But seems to have improved once I got through the change. My eldest son Had problems as well from a very early age. Sadly he passed away aged 6. From a brain Tumour, So I don't know if his would have got worse or not. If its any help you soon adjust to having to cope with all the problems it causes.