My Addisons disease (adrenal insufficiency)

[Tysonsmum]

Hi. I am 59 later this month and in January this year I was diagnosed with Addisons disease. I've been in prednisolone oral tablets for the last 6/7 years to control my asthma. Every time I had a chest infection they would give me antibiotics and up my steroids. It got to the point my lungs couldn't function without steroids and loads of other asthma medication. I am under the Brompton Hospital and they did a test and told me I had adrenal insufficiency. I had my first adrenal crisis in January and it was so scary. I couldn't give myself my injection, it was like I was drunk and couldn't walk properly, sweating and couldn't think or talk properly. I was taken to East Surrey Hospital and had to be given IV fluids and Hydrocortisone injections. This is what happens every time you have a crisis. My body can not cope on less than 10mg pred. Everyone is different. It's not common and a horrid disease

[greygoose]

Hi Tysonsmum, welcome to the forum.

Do you have a thyroid problem? Have you ever been tested for thyroid? Adrenals and thyroids go hand in hand, so you might have some sort of thyroid problem.

[Tysonsmum in reply to greygoose]

Hello greygoose I have an underactive thyroid and on thyroxin for life too.

I also have Addisons Disease Severe Eosaphilliac Asthma, osteoporosis, sleep apnea and depression.

I've been shielding since the beginning of this pandemic as steroids put me in the immunosupressed category. I had my two vacations and a blood test showed I'd made no antibodies so I still couldn't go out. I had a 3rd vaccine of a different strain, not the booster and I have no idea if that has worked as my GP now says I can't have another blood test.

Do you have Thyroid problems?

[greygoose in reply to Tysonsmum]

I have Ord's Thyroiditis. But my thyroid is dead, now. I take T3 only as I cannot tolerate thyroxine.

Are you sure you are optimally medicated for your thyroid? If not, that can cause all sorts of problems.

[Tysonsmum in reply to greygoose]

Thank you, I'm not sure I'm replying on the right bit 🥺 thank you, I feel I'm getting nowhere. My health is so bad my daughter is my carer. I'm so tired all the time and dizzy now for a year

[greygoose in reply to Tysonsmum]

So many things can cause dizziness. Being hypo can, for one. As I said, are you sure you're optimally medicated for your hypo? We can help you with that if you post your latest blood test results and ranges.

Low B12 can also cause it. Have you had your basic nutrients tested: vit D, vit B12, folate, ferritin? Hypos often have nutritional deficiencies because they have low stomach acid. So, if you haven't already, it would be a good idea to get it done.

Did you know that asthma can also be a hypo symptom?

I don't have Addison's but I did have Adrenal Fatigue - not a condition recognised by main-line medicine, I know - and was on HC for a couple of years. I'm not an expert, but I would question whether your doctors is right when she says she can't swap me onto Hydrocortisone until I get down to 10mg daily pred. I wonder why that would be...

[Tysonsmum in reply to greygoose]

I don't ever see my blood results but I could email my GP and ask them to send me them. I have B12 deficiency and I inject myself but I've run out. Will email now to ask for more. I can't believe it's been a whole year I've been dizzy and I've been on lots of different tablets. I'm on cyclizine 50 mg three X daily at the moment but they don't help. Thank you for replying

[greygoose in reply to Tysonsmum]

Don't ask your GP for results, most GPs prefer we don't actually know them. Ask the surgery receptionist for a print-out - don't accept verbal responses or results scribbled down on a piece of paper, mistakes can creep in that way - you want a print-out that will give you your results and ranges. It is your legal right to have one. Always, always get a print out of your results after any blood test. You need to know exactly what was tested and exactly what the results were and keep your own records. Don't just rely on your doctors opinion, because they can be wrong!

[Tysonsmum in reply to greygoose]

You are very lovely and helpful Heather. Getting past the receptionists is not easy. I will call them now. Thank you

Carol

[Barrister]

There are a few of us on here who have Addison’s/ Adrenal Insufficiency.

[Tysonsmum in reply to Barrister]

It's interesting to hear different people's experiences

[heathermr]

I was finally diagnosed with Adrenal Insufficiency just over 18 months ago after years of struggling particularly with my asthma. I finally saw an Endo who specialized in pituitary problems and he has changed my life. He has swopped me on to hydrocortisone instead of prednisolone and within days my asthma which had become chronic had virtually disappeared. I still have the odd wheeze but I just use an inhaler when I need it. My Endo is now looking at growth hormone as he suspects I've lost all of my pituitary function. He says that hydrocortisone is a better fit than prednisolone for AI so it may be worth giving it a try.Heather

[Tysonsmum in reply to heathermr]

I am so glad you posted. My endocrine Dr says she can't swap me onto Hydrocortisone until I get down to 10mg daily pred and I'm stable but my asthma is out of control and Im tired all the time with Addisons. Can I ask you what dose of pred were you on when you swapped to hydro? I've been put back on azithromycin 3x week again cause my chest is so wheezy.

[heathermr in reply to Tysonsmum]

I can't remember exactly but I seem to think it was 20 MG because even on that dose I was wheezing really badly and couldn't climb stairs. I went on to the normal dose of Hc, 10, 5,5 but the Endo has raised that now to 10,10,5 to try and give me some more energy. He is now looking at growth hormone as he thinks that I've lost all the rest of the pituitary function including my TSH. I'm going for a GH stimulation test next week . I did feel so much better when I swapped to HC and the asthma just settled within days but this tiredness is really draining.Heather

[Tysonsmum in reply to heathermr]

Bless you. You understand. I feel for you, it is exhausting just getting out of bed to shower. Everything makes my body ache. Do you get pains in the top of your legs and your pelvis? When I was in hospital last the nurses didn't know anything about Addisons and they just thought I was lazy made me feel awful. I'm so wheezy my GP gave me ventolin to use in a nebuliser so I've ordered one that's coming today. The hospital were going to lend me one but with covid I thought I'd get myself one.

[heathermr in reply to Tysonsmum]

It's so very frustrating trying to get these problems sorted. It's taken over 10 years to find an Endo who understands how crucial the pituitary is, and how awful you feel if it's not working correctly. My local Endo dismissed my AI as not too bad even though I couldn't get out of bed and was wheezing so bad I was like a traction engine. The pituitary specialist immediately put me onto Hc and is carefully checking out all the rest of the pit function. I only hope that he can sort out this dreadful tiredness that envelopes me after mid morning . I don't get any pains but do suffer with cramps so bad that my limbs and fingers lock.I ended up at A& E last year with a bad cut on my heel and nobody seemed to have any idea about AI. One doctor had to look it up on Google when I asked about doubling my HC dose!

Good luck with your asthma, it might be worth trying HC instead of pred just to see if it helps you.

Heather

[Tysonsmum in reply to heathermr]

Thank you Heather, I'm going to call my Endocrine Dr now. I am going to tell her about how it worked for you. I'm just going to use my new nebuliser first. They have told me to go into hospital but I'd only catch covid as I have no immune system. Have a good day , Carol