Thyroid UK
87,425 members102,129 posts

Addisons

Hi,

I'd really appreciate anyone comments regarding my post as I very upset at the moment.

I had a blood test last Wednesday due to my anxiety I was called on Friday and asked to come in and the doctor told me I had Addison's disease as my results where very low and I need to go to the hospital for further tests.

I had my baby girl 10 weeks ago and had the blood test at 12 o'clock would my sleeping pattern as I'm up throughout the night disturb my levels?

Has this happened to anyone else absolutely they've tested clear?

Also anyone with addisons please give me any advise as I am just drawn to the bad story's and it's a really upsetting time for me.

Thank you

Michelle

19 Replies
oldestnewest

I'm sorry you are feeling so unwell. I don't know anything about Addisons but it's good they are sending you for more tests and checking things out as you need all the energy you can find for your little girl.

Reply

Thank you for your reply.

Yes I just hope it's not as bad as what I'm thinking right now.

Reply

I just copied a bit from Wikipedia, I know it's maybe not the best source but it's easy to understand and sounds quite positive.

"Long-term outcomes with treatment are typically good"

en.wikipedia.org/wiki/Addis...

Reply

Thank you for this. I have had a thorough read.

Fingers crossed I can be seen next week.

Reply

I wonder if you had any problems with your pregnancy? If you look at the Pituitary Foundation website pituitary.org.uk/informatio... and scroll down to read abut Sheehan's Syndrome and Lymphocytic Hypophysitis it will explain in more detail. Although my problems could be related to either one I was diagnosed with lymphocytic hypophysitis. I have been taking hydrocortisone since 2012, looked after really well by the endocrinology department and there is nothing to fear. It is good that the medics have picked this up so quickly. Hopefully, whatever the outcome within a few months you will feel much better and will be able to enjoy your baby girl. Good luck.

Reply

Thank you so much for your reply. my pregnancy was pretty straightforward however I did feel unwell and had tests but the results were inconclusive. I didn't realise how many different illnesses there were and it'd difficult because I only have a couple of the symptoms of addisons one being fatigue but being a mum of a 6 year old and a ten week old I'm pretty sure this is normal. Fingers crossed I got an arnswer soon as I'm sick with worry.

Reply

If you read the patient stories about lymphocytic hypophysitis you will get a better understanding about pregnancy and how it affects the pituitary. The Pituitary Foundation is a reputable charity and is promoted by the NHS. Addison's is primary adrenal insufficiency, whereas the condition when caused by pregnancy is secondary adrenal insufficiency because of problems with the pituitary gland.

The Pituitary Foundation has a very helpful nurse to talk to who would guide you through all this. Like Annie, since diagnosis and treatment I also feel so much better. look forward to feeling so much better.

Reply

Hi Michelle

I have Addison's and actually feel SO much better since diagnosis

My advice is to understand what tests you are given and the results...and don't read the bad stories on the web

Good luck with your next lot of tests, let us know how you go x

Reply

Hi Annie,

Thank you for your message I really appreciate it. How long have you had addisons and what where your initial symptoms? X

Reply

Diagnosed about 3 years ago

I had no energy, and I mean none! Sat in a chair all day and did the bare minimum to get by

Lost a lot of weight, weak, light headed and the tan

Took over a year to be diagnosed

I'm good now

Just keep taking the meds 😉

Reply

Thank you.

In the three years have you had a crisis? It worry me that I will be in there for periods of time.

I haven't had any of these symptoms there just going from my results I have recently had a viral infection I don't know if that changes anything.

Can you live a normal life?

So sorry for all of the questions I'm just trying to make sense of it all x

Reply

I do live a normal life, I'm not up for running a marathon (but never have been) I like to swim and go for short walks

I do have to listen to my body and pace myself; resting when needed, taking extra hydrocortisone when needed

I have had a crisis. Was driven to a&e by my partner and stayed in one or two nights. In hindsight my endocrinologist had reduced my dose of hydrocortisone, I'd had a big day physically and mentally and was probably dehydrated. I'm wiser now, can't say it won't happen again but I'm more aware of how my body feels...

Try not to worry (I know, easily said) and get your tests done, making sure you get a copy of results, then you can be informed and make good decisions for yourself x

Reply

I have secondary adrenal insufficiency due to a pituitary tumour, which is classed as Addison's as I need steroids to maintain health. If at any time, before you see the doctors for further tests , you feel shaky, faint, trouble getting words out you will need emergency intervention. It can be a life threatening condition - I don't want to scare you but if your levels of cortisol are very low it is serious & you need medical intervention as you can go into crisis which means your body is shutting down. Did they tell you how low your levels were & did they start any treatment?

Reply

Hi Pauline thank you for your reply. To be honest since being told on Friday I haven't feel well at all but I don't know if that's because of anxiety and worrying. Th y started me on steroids which I'm reluctant to take until i know for sure.

Reply

I would take them, they aren't going to do you any harm but rather should help. What dose did they give you? If you are on Facebook there is a great group on there which will help you with information & advice. facebook.com/groups/1759489... You've been pointed towards the Pituitary Foundation website there is also The Addisons website addisons.org.uk

Reply

Yea that's true I will start them tomorrow. Thank you I will definitely join. They have put me on 10 on the morning five at lunch time and five before 6 o'clock. Can I asked what symptoms you had?

Reply

That's a usual sort of dose, further testing will reveal whether you need more or less. Your own body is not making enough cortisol so you need to take the Hydrocortisone.

It was different for me, I had a tumour in my pituitary gland which was making too much cortisol, so I had insomnia, excessive weight gain, high blood pressure muscle weakness & more which is the opposite to Addisons. Now the tumour has been removed I don't make enough cortisol so need to take Hydrocortisone. Low levels of cortisol can cause weight loss, fatigue ++, nausea which can lead to vomiting, dioarrhoea, confusion, muscle weakness. If you do have any vomiting/diorrhoea then you need medical treatment urgently. You;re on a huge leaning curve but you;re not alone, they're are others who have been where you have been. x

Reply

Hi my name is Angie and I am suffering with

extreme weekness,

pigmented skin and dont go in sun as it affects me badly

shortness of breath

brain fog

muscle weekness extreme at times

trouble with gut

I have got no body hair left much at all

I have got a dark mark under my gum

I am underactive thyroid

I am ceoliac

I have had a couple of attacks recently where I was very sick diarrhoea had trouble getting out of unconsciousness sweating and my heart hit 180 beats luckily I was in hospital at the time but it was a endoscope that set it off and a blood test or not as they couldnt get it.

they were so concerned about my heart that they wouldnt look anywhere else.

I have lost weight 3 times over the last 3 years but I am not a thin person

do you think these where adrenal crisis and that I have addisons.

I know this my sound silly but I have been ill now for more than 3 years.

angie

Reply

It sounds highly suspicious of an Addison's crisis. I would o back to your GP

Reply

You may also like...