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My Life With Adrenal Insufficiency

My MRI Brain Scan for Adrenal Insufficiency

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My MRI Brain Scan for Adrenal Insufficiency

After being diagnosed with Adrenal Insufficiency I needed to undergo a MRI Brain Scan of my Pituitary gland. I’ve decided to share my experience and my results to help others know exactly “what to expect” and understand the test better. However you can hit  the link below to learn more about  Pituitary problems in Adrenal Insufficiency and the reason for a Brain MRI Scan. 

My Experience

So I was asked to come to the Hospital for a MRI scan of my pituitary. Going through the public system there was a six month wait which really wasn’t good as it did cause a lot of worry and stress which was unnecessary.

I had to take all my clothing off and fill out a form to say I was not pregnant, that I did not have any metal in my body or any pacemaker’s etc. I then laid down on the board. I was given ear plugs and they put big triangle sponges around my head to secure me. I slowly slid inside the giant MRI machine and it was not a nice feeling.

I have to be honest, I wasn’t scared or claustrophobic or anything but I didn’t really like the feeling of being trapped and so I felt a tiny bit anxious. I then laid down for 15 minutes while the machine made a terrible banging noise. i’m glad I had earplugs in as it was really quite loud and gave me a headache. it was like hearing a constant clanging right over your head.

Half way through I was slid out and changed position. Obviously I was asked to lie as still as possible which I did, the process was then repeated and then the experience was over.

I waited four weeks for my appointment with the Endocrinologist at which point I was told that the brain scan had shown no signs of Pituitary damage. I had no large tumours, no mass lesions, the pituitary stalk was midline and optic chasm appeared normal. However tiny microadenomas could not be ruled out at this time.

So what did this mean?

Pretty much I was told my pituitary looked normal. There was no injury or damage or apparent large tumours. However due the size of (Microadenoma’s) I may need a future MRI in about six to twelve months to see if anything had grown.

That was the end of the test, Did I have a large tumour preventing my Pituitary from sending ACTH to the adrenals? No! Did I have a small tiny tumour doing this? Inconclusive.

Did I get a second Brain Scan 6-12 months later? No! It’s actually been 18 months since my MRI Scan and last week I had the Insulin Intolerance Test which I was supposed to have 18 months ago to test the function of my Pituitary at a cellular level and to look for irregularities in cortisol and growth hormone production.

So when do I get the results of this test? Funnily enough I have to wait until the end of the year. As I’m not having an adrenal crisis, I’ve been put on the waiting list for 6 months time.

I could complain but the reality is this is the public health system and there are so many people and not enough doctors or appointments, that something which could be done privately in a matter of weeks for me will take 2-3 maybe even 4 years.

I did receive a letter in the mail a month ago stating I had Tertiary Adrenal Insufficiency and I was told this was due to hypothalamic Dysfunction, however at my last appointment I was told this had been an error and that the Endo who read my notes had looked at a possibility when it had actually been ruled out.

Funnily enough I was told I had primary AI 10 months before that. So following my MRI scan was I any closer to knowing what type of Adrenal Insufficiency I have? No! i am not likely to find out until mid next year.

I need to do more tests and undergo more procedures. I really need a 24 hour day curve as my daily stresses are not that of a typical “average person”. The best senario is to see a private endocrinologist to give him all my tests to date, complete the remaining tests to see what level of medication I need- so I’m not collapsing on and off every few days or following a simple visit to the park or church…and then I want to continue my fight to get the Adrenal Pump….Yes I mentioned it again, a 24 hour pump that could give me the ultimate medical treatment for my condition, something unavailable to me unless I pay privately.

So here I go blogging to share my experience, to raise awareness and to try and earn a little more money to put towards the Adrenal pump and private treatments.

Wish me well.

I hope you enjoy my blog and find it most helpful, especially if you need to understand this subject!

Angela Milnes xx

To Read More About My Health Journey Visit The Adrenal Diaries.

2 Comments

  1. Angela have u looked into a grant for a pump? I too have been diagnosed with secondary adrenal insufficiency. There are also foundations that are looking for a charity to donate to for tax write off. First go to grants.gov. write the white house. Heck I have even thought about emailing elllen show. I have to have operation on back, but as soon as that is over iI plan on getting on board. We need to make this disease come to forefront Why is it that a disease ddoesn’t get the help it needs until a star has it. Like Lyme disease being invisible because we look well, so do we look OK. Let me help explain the hypothalamus stimulates the pituitary gland to make ACTH which in turn stimulates adrenal glands to produce cortisol,, whivh is what all our organs need to function. In some people the problem is caused by hypothalamus and others are caused by pituitary, and finally it could just be adrenal damage. Among several causes of this disease are tumors, hemotragh after chil birth, cancer, autoimmune diseases over dosing with steroid injections or prednisone over years with aabrupt withdrawal. U probably know this. I am a nurse and u need to go to endocrinologist and reme!her ur paying him. If u take too much steroids u can get Cushing’s disease, look up. Let’s keep in touch

    1. Hi Pana, I’m doing my best. I am in the UK and am going to be sharing my story int he newspaper and yes looking for a charity to help may be a good idea! Thanks and nice to meet you. Angela x

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