Addisons or not

[Meno27]

Hi

Got adrenal deficiency , hypothyroidism , pituary gland not working properly

What is this classed as

Thxs

[Hidden]

As it's your pituitary gland that isn't working properly then it's classed as secondary adrenal insufficiency. The pituitary gland secretes ACTH which in turn stimulates the adrenal glands to produce cortisol, so when there is an issue with the pituitary you don't get the HPA hypothalmus- pituitary - adrenal feedback, so it time the adrenal glands will stop producing any cortisol on it's own. You will need to be on steroids for life unless your pituitary gland starts producing ACTH again. I have secondary adrenal insufficiency due having a tumour removed from my pituitary gland. The hypothyroidism is due to the pituitary issues as well, so when you need your thyroid checked you need to get T4 checked & not TSH as that's a pituitary hormone. If you are on Facebook then join the UK Addison's & AI info & support group for some good help. Also look at the Pituitary Foundation website & the Addison's disease website too. if I can help in any way then just ask.

[Meno27 in reply to Hidden]

Thxs for reply

Been crazy time started with over active thyroid with little cortisol according to blood tests . Had synacthen test that was very low put on 30mg hydrocortisone more blood tests then thyroid went into hypothyroidism docs thought it was tumour had MRI but was clear more blood tests and another synacthen test then put on levothyroxine 50 micrograms and that is where I am ,been a rough time

Really appreciate your reply take care

[Meno27 in reply to Meno27]

Hi Pauline

Is there any sites dedicated to secondary adrenal deficiency,everything even YouTube just comes up with addisons

Thxs

[Hidden in reply to Meno27]

Have a look on the Pituitary foundation website: pituitary.org.uk/informatio... also The Addison's Disease website the treatment for secondary is the same as primary/Addison's but we don't need Fludrocortisone, everything else is the same.,so you will need an emergency injection kit, a medical alert bracelet, at least 2 months extra supply of Hydrocortisone & registered with your local ambulance service. If you are on Facebook then join the UK Addison's & AI info & support group for lots of help & support. I'm always happy help anytime as well.

[Meno27 in reply to Hidden]

Thxs Pauline

[Meno27 in reply to Hidden]

Hi Pauline

Finally got a diagnosis consultant reckons popuituarism and caused by pituary apoplexy more blood tests

[Hidden in reply to Meno27]

Glad you've got an answer, so you've got hypopituitism from the the apoplexy - I hope he's given you the emergency injection kit? You'll learn to "read" your own body & when you need to take a bit more steroids. x

[Di01 in reply to Hidden]

Hi paula how did they find out u had pituitary gland issues ? What test can you have if u think there is something wrong with the adrenal gland or both?

[Hidden in reply to Di01]

My pituitary adenoma was found by chance although initially it wasn't secreting excess ACTH. 18 months later I had further testing done as I was getting more symptoms, such as insomnia, weight gain, muscle weakness & high BP. Tests revealed that I was producing too much ACTH which caused my adrenal glands to produce too much cortisol & I was diagnosed with Cushing's Disease. Tests done are blood tests, 24 hour urine tests, Dexamethasone test, lots of them.

[Di01 in reply to Hidden]

Thanks thats me just feel so weak fatigued high blood pressure low mood & fight stress hormone is always up causing my nervous to crack in so a blood test & 24 hour urine test ? Ive never heard of acth ?

[Hidden in reply to Di01]

ACTH is the hormone secreted by the pituitary gland to stimulate the adrenal glands to produce cortisol. You probably need a pituitary panel blood test to see if they are normal. A 24 hour urine checks cortisol levels.

[Di01 in reply to Hidden]

Did u need to go in hospital for these test i've been struggling with this for 4 months since hit menopause

[Hidden in reply to Di01]

My GP started the process & then the Endocrinologist.

[Di01 in reply to Hidden]

Hi pauline What happen when u found out u had this crushing disease what happens then sorry for all the questions but i've been going thru all ur above symptoms?

[Di01 in reply to Hidden]

Hi pauline curious in this post Sorry for all the questions but what happen next after u found out u had this high cortisol ?..what did they do & what is the out come u said 18 months u had it & then found it? i'm just wondering as i've got all the symptoms of that crushing disease for 4 months worrying me of how long it can effect someone b4 it will do more damage been sat going off my mind since the other day cant do much with easter hols x

[Hidden in reply to Di01]

I was "lucky" in that my pituitary tumour was found by chance & all of the testing showed that it was producing too much hormone. People can have Cushing's for years before it becomes apparent, plus it all depends on what is causing it. Too much cortisol can be from being on long term steroids for another condition, or a benign tumour in either the pituitary or adrenal glands. Lots of testing is done as around 10% of people have a benign tumour that isn't causing any problems. I had surgery to remove the tumour from my pituitary gland.

[Di01 in reply to Hidden]

Thanks pauline im really worried i kno its this i ave

[Hidden in reply to Di01]

Many people think they may have it but mostly they don't - it's a very rare condition, 2-3 in a million. It will be the biochemical tests that will show if you do have Cushing's, it can take a long time as they will want to make 110% sure that there is a problem.

[Di01 in reply to Hidden]

I have it i swear i kno i have i've gone from.a 14 to a 20 in in a few months my back has a bump my face is all puffed up & got weakness in arms & legs & other symptoms

[Di01 in reply to Hidden]

I've managed to book a private acth test for tomorrow hopefully this is the test i need they not said fast or i have to be on a special diet for24 hours so have to hope the test will provide me with some kinda of answers thanks for replying to me pauline honestly much appreciate it as been going crazy wouldnt of known where to start without your advice & information i needed xx

[Hidden in reply to Di01]

The ACTh test needs to go on ice or taken to the lab straight away. One test will not prove it one way or the other,

[Di01 in reply to Hidden]

What other test is there was going to book a mri but the guy said it would only show my bone structure up & need a special mri for that area just want to kno if there any signs of the cushing disease can be detected in that blood count thought it checked for high cortisol levels then at least i'd kno there was summat going on

[Di01 in reply to Hidden]

Would of i been better just booking a cortisol blood test instead ?

[Hidden in reply to Di01]

The early morning serum cortisol & a 24 hour urine test are the starters. 10% of people have a non functional benign tumour they no nothing about, plus a pituitary tumour can't always be seen on an MRI, it is the biochemical evidence that shows if it is Cushing's. You will need lots of tests, often repeated.

[Di01 in reply to Hidden]

Doesnt sound good when all i want is answers to whats going on took some pictures last night of me now comparing them to me b4 i got ill & that hopefully go to my dr & say look at them & have some back up test because he would just dismiss the idea of me avin anythin like that but u kno ur own body dont u regardless! Even if the test shows a little indication of something i'l know i'm not going crazy Pauline how draining its been what i'm going thru just keep thinking b4 they'l sort me out i'l not be here!..just dont kno how long u can live with it b4 the worse happens freaking me out just i feel like my body is kno longer mine!.minds been so foggy dont want a heart attack or fits because its been left to long everything i read relates to potentially life threatening issues with it!

[Hidden in reply to Di01]

Worrying about it won't help as it will increase your stress levels & raise your cortisol levels.

[Di01 in reply to Hidden]

No cant help it not even sleeping well now!

[Di01 in reply to Hidden]

Pauline got my results 9% over normal limit?

[Di01 in reply to Di01]

Think now i've got a good case to take to my dr & say listen it wasnt anxiety because for the last 4 months he has fobbed me off & had to take my own action x

[Di01 in reply to Di01]

So i hope this has some info to why ive have been feeling ill

Tested

[Hidden in reply to Di01]

To be honest I'm not sure as I'm not familiar with measurement.

[Di01 in reply to Hidden]

Okay just high anyway so means there is something wrong i kno that think all my body is failing tho

[Di01]

I seem to have this adrenalin rush then get very nervous my nervous seem to be setting off high blood pressure its driving me mad i think its the fight or flee hormone gets stuck in mode really cant seem to get it settle just wondering if this is adrenal failure anyone experience this ?

[Hidden in reply to Di01]

That isn't really a sign of issues with either the pituitary or adrenal glands. Adrenal glands don't really just "fail" .

[Meno27 in reply to Hidden]

Hi Pauline hope you are keeping well 👍

[Hidden in reply to Meno27]

Hi , so so at the moment, I had a large clot on my lung last November so still recovering from that, but struggling with a really bad back. How are you doing?

[Meno27 in reply to Hidden]

Sorry to hear that , finally confirmed hypopituitarism due to inflammation of the pituary ,adrenal insufficiency, hypothyroidism, then to top it all me/cfs quite a year all in all

[Hidden in reply to Meno27]

Oh I'm sorry to hear that - it's not fun dealing with these conditions is it?

[Meno27 in reply to Hidden]

No definitely changes your life Getting infections almost none stop down below docs just put me on antibiotics , psoriasis is coming back slowly disappeared when I first started hydrocortisone , every mornings like opening Pandora's box

[Di01 in reply to Meno27]

Hi meno did at any point u not feel yaself like ya brain didnt feel yours ?..been feeling my brain isnt mine for ages dont seem to function the same

[Di01 in reply to Hidden]

I'm clueless when i mean failure i mean not working like they should do

[Hidden in reply to Di01]

A cortisol blood test should show if they are not working.

[Di01 in reply to Hidden]

Thanks chick much appreciate info xx

[Di01 in reply to Hidden]

Spoke to someone today regarding these & they told me to put a hrt patch on i asked him if my adrenal glands where not working properly would the patch do any harm he said no just put one on i'm hoping now i've done the right thing as i've put one on i'l get a blood test book if i can find a private one near me! Thanks again

[Hidden in reply to Di01]

HRT, oestrogen contraceptive pill & Biotin found in some supplements may give elevated cortisol level results. It's advised to be off them for 6 weeks prior to any testing.

[Di01 in reply to Hidden]

Could i be making myself worse then by being on the hrt patch on dont want to make my situation any worse & only had it on 3 hours so rather disregard it now & 6 wks was hoping to get the test done straight way but now avin patch on for 3 hours shouldn't of got in to my blood stream yet ?..