My Life With Adrenal Insufficiency

Starting my Adrenal Pump trial

Adrenal Pump

Starting my Adrenal Pump trial

For the past three years I have been extremely unwell. I suffer from secondary adrenal insufficiency amongst other conditions and this means I do not produce enough cortisol for my body to function as a normal person.

Adrenal Pump

Cortisol is the stress hormone and is produced as a response to physical, emotional and everyday normal stresses. A stress could be something as simple as standing up or walking to getting dressed, being unwell or in a car crash. Each activity requires a different amount of cortisol and the body will in a healthy individual produce the cortisol needed.

Without cortisol in the body, the body will goes into adrenal crisis which when left untreated within 1-3 hours will lead to death.

So I suffer from a life threatening condition and every day revolves around taking hydrocortisone (cortisol) tablets at certain times in the day to keep my body supplied.

One issue I have with taking cortisol tablets is that tablets have no way of mimicking the natural cortisol circadian rhythm of the body. Therefore with Adrenal Insufficiency the doctor will either give me too much or too little medication.

For example if I need 8mg to function for 4 hours, I will either have to take 5mg which may not be enough or 10mg which could be too much.

Too much steroids causes health problems including weight gain, muscle pain, fatigue and so forth. Too many steroids can cause diabetes and osteoporosis.

However not enough steroids causes hypo adrenal symptoms. Fatigue, exhaustion, weakness, confusion, low BP and serious symptoms like vomiting and diaorreah which lead to Adrenal Crisis.

Since my own diagnosis I’ve always been unwell and sick going from too high to too low a dose and that results in being chronically and continuously unwell.

Another issue with tablets is that it’s so hard to remember to take medications between 3-6 times a day. If you become unwell and feel confused or have a brain fog then remembering to take medication can be even harder. Relying on alarms and others to help you can be difficult and when you do miss a dose or take your medication late the knock on effect can last days.

When one takes oral hydrocortisone it takes 1-2 hours to absorb into the system and then drops out of the blood stream after 5-6 hours.

If I am late to take a dose I will feel very unwell for hours. If I wanted to take a nap in the day because I’m unwell there is a chance I may not wake to take my next dose. I literally have to have my husband as a carer to help me manage my medication as its so so hard.

The hardest part however is waking in the morning. When I wake I have low Blood pressure and feel sick and dizzy. My body is a dead weight and I have to wait for my medicine to work.

In a normal body the cortisol is released overnight so that the body is able to get up and function in the morning. Not so for someone with adrenal insufficiency! Unless we take medication at 4am in preparation for waking up at 7 or 8, the body wakes with no cortisol which is not normal and so the body can’t function well in the morning.

When I wake up unwell in the morning, even after my medication is absorbed and begins to work I feel ready unwell all day because of the knock on effect. Often if you feel sick it takes time to recover and so I live day to day not having enough cortisol and then putting it on my system and recovering from not enough. I’m constantly unwell and have a port quality of life.

This is why the adrenal pump is so important to me. With subcutaneous hydrocortisone infusion therapy, I can set liquid hydrocortisone at the rate I need. My cortisol levels can gradually build while I sleep as they would in a normal healthy person and I can wake up in the morning better able to function.

I can set the rates of infusion to be more accurate than tablets which are dumped in and out of the body. I don’t have to wait an hour for my meds to absorb. I don’t have to go over and under replaced and although I will still be adrenal insufficient my quality of life should improve significantly.

I don’t have to worry about memory and brain fog issues and forgetting my medication. I won’t even have to rely on another to check I’ve had my medication at the right time.

Yesterday I started a one month trial on the adrenal pump. I woke up in the morning and thought, “oh my gosh” I have cortisol in me already. I was able to get up, give my daughter her clothes and get dressed.

I still felt unwell and dizzy but I coped so much better than I would usually. I didn’t have to struggle to lift my dead arms to find my medication and wait for it to kick in and feel sick all day.

I did still feel unwell but not as much as usual. It may take a few weeks or days before I feel the full effects of switching to a pump but so far so good. It’s been 24 hours and I’m loving it already.

I do have to fundraise and pay for my own device ( adrenal pump) and I need to pay for my monthly needle sets and medications. I’m not sure how I will find the money for this. I’m trying to fundraise, sell things and maybe will have to get a loan but it is so worth it.

I have four weeks to try out this adrenal pump and then try to find the money I need to purchase my own pump.

The big battle is over. I have a doctor who recognises the benefits of this treatment for me and now it’s a matter of finding the money to pay for it.

I’ll post more on my experience with the pump and share what I learn. For now I’m just very excited

11 Comments

    1. Thanks Kim. It’s a bit scary but I will keep plugging away and trying to save. it’s not going to be easy but I can do this somehow. Nothing is impossible.

  1. Sounds so promising Angela. If you could tell even a small bit that it was helping that is good! Keep us posted!!
    mo

  2. Hi Angela, I have SAI also! U have explained more of how and why of how I feel than I have ever been able to do. I wake up every morning and it’s all I can do is get up and get in my chair. My kids and husband doesn’t get it. They think I’m just being lazy, and then that put MORE stress on me. It a never inding cycle. Good luck on the pump, let me know how it works out. Pam

  3. Hi Angela
    I am so pleased and excited for you that you have finally found a doctor to support you with trailing and using the pump. I am also in a very similar situation to yourself with secondary adrenal insufficiency. Would it be possible to pm or message me with your doctors details so that I can try and get an appointment. I really hope that this works for you as living with uncontrolled seconday adrenal innsuficency is not living it’s barely existing. Any information would be greatly appreciated.
    Many thanks
    Jacqui Murphy

  4. I’m interested in the pump. I have Primary Addisons. I live in the US, specifically in Northern California and I’m curious to find oUT how to go about getting one, how much it costs & all the particulars I may need to know. I appreciate any help or info you can provide. I hope it really works out for you and gives you that quality of life that all of us are seeking.

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