Steroid pump for secondary adrenal insufficiency with traumatic brain injury

[Poodlepost]

Hi. I’m new on this site but I wanted to share my AI stories, answer some questions and hopefully find some more resources to help us with this challenging condition.

I’m reading that a lot of people on this site seem to be taking their steroids orally. I too was started on oral medication, dexamethasone, until I was put on a steroid pump that gives me Solu-Cortef subcutaneously throughout the day so that it mimics our natural cortisol levels. I was given an old diabetic pump that I fill with solu-cortef instead of insulin that I wear 24/7. The pump makes a big difference - it’s not the “cure” but it is much better (IMO) than the alternatives.

FYI

49 yo Female (injury at 35)

MVA with traumatic brain injury (2005)

Pan-hypopituitarism

Secondary adrenal insufficiency

Hypothyroid

Decreased ACTH

Decreased progesterone

Decreased HGH (growth hormone)

Decreased B12

Decreased vit D

The traumatic brain injury damaged my pituitary which is the cause of all the hormonal deficiencies. The pump allows me to regulate and administer amounts of steroids depending on my symptoms and that keeps me safe from going into adrenal crisis but I still have very little energy.

I hope this helps people in their journey to find answers. Although I feel that I’m better off since being on the pump I still don’t live any kind of normal life and I’m still researching, looking for answers and hoping there’s more out there.

I’m hoping that someone out there may have more insight, someone that knows of a specialist, a hospital, a miracle anything or anyone that can try to help. I live in the US but I’m willing to travel anywhere to find answers.

Thank you in advance for your help/advice.

[shaws Administrator]

I am sorry about your sad story and I do know that sometimes people who're on steroids can find it difficult to withdraw.

If members do take them they will respond. I am not medically qualified but believe steroids are used mainly for inflammation in the UK

medicinenet.com/steroids_to...

[Hidden in reply to shaws]

You're right, but for people with adrenal insufficiency they are needed to live NOT for inflammatory reasons! Whether we have primary or secondary adrenal insufficiency our bodies don't make enough cortisol to enable us to live. Everyone needs cortisol in their body so if you don't have it you have a life threatening condition, it can be very easy to go into "crisis" & die. We have to carry a life saving cortisol injection with us at all times, so that it we have an accident or a traumatic event, whether emotional or physical, we need the injection or we can go into shock. It's very unlikely that we will ever get off the steroids! Sadly many people, including doctors & nurses, have very little understanding of the condition, & people have died because of the lack of knowledge..

[shaws Administrator in reply to Hidden]

Thanks PaulineS for giving me the important information with regards to this particular condition.

[Hidden]

Welcome to the group! I also have adrenal insufficiency due to removal of a pituitary tumour. Sadly here in the UK not many of us are given pumps to use for our AI, there are a few but those people are the ones who don't absorb well & have other issues. The pump is not available on the NHS generally. Also due to there not being a home testing method yet it can be really hard to get the algorithm to find the right way of dosing. It would be so good to have a way of testing cortisol at home! Another reason is that very few hospital offer to do a 24 hr day curve(or even a 8 hr day curve!) to see how we are absorbing our Hydrocortisone. One of the best doctors in the UK is Prof Peter Hindmarsh, he is a paediatric Endocrinologist at Great Ormond Hospital. There is a website called CAHISUS.org it is full of information, he has also written a book called Congenital Adrenal Hyperplasia - it's well worth reading if you can get hold of it. There is a long way to go in the treatment of Adrenal Insufficiency as a lot of doctors & nurses have no idea about it & how it impacts our lives! If you are on Facebook then there are several groups supporting people with Addison's/adrenal insufficiency.

[MaisieGray]

I'm sorry to hear of your TBI. It's thankfully recognised now that even a minor degree of whiplash for instance, can have a deleterious effect on the pituitary functioning. On the back of your steroid pump though, are you being optimally treated for your hypothyroidism and associated vitamin deficits - not being fully optimal can of course, impact directly on energy etc levels. If you wish to post details of your respective dosing and your latest results and ranges, members can comment.