My Life With Adrenal Insufficiency

The Realities of Life With Secondary Adrenal Insufficiency

Adrenal Insufficiency

Adrenal Insufficiency

Well I had no intention of writing this blog post and it comes straight from the heart.

My health and quality of life is pretty poor living with Adrenal Insufficiency and Growth Hormone Deficiency. I spend a lot of time in bed or housebound usually often leaving the home for hospital and doctors appointments, however since the start of 2016 I have been more unwell than ever.

Things started to go downhill when I was put on a Liver Shrinking Diet in the beginning of January in preparation for my Gastric Bypass operation, which in the long run will improve my quality of life.

Pretty much I went on a really strict low calorie diet around 600 calories a day which puts stress on the body and forces the liver to shrink.

I had no idea how this diet would affect me as someone with “Adrenal Insufficiency”. For those who don’t know, Adrenal Insufficiency means I cant produce Cortisol, “The Stress Hormone” and so any new stresses added to the body can cause Hypo adrenal symptoms and put you at risk of Adrenal crisis and death.

Whilst I can never seem to get over the exhaustion and muscle pain, the dizzyness and nausea do come and go and I have had periods in the day where I struggle to concentrate or focus. In fact it takes a lot longer than usual to to write something like this as my ability to think is destroyed and replaced with dizzy spells, a banging headache and nausea.

Since January my health has got worse and worse. I feel sick continuously. I find I’m repeating myself to my husband saying, “I feel sick, I feel sick” and he replies “well get a bucket”. That’s not exactly the response I’m hoping for. I’m trying to work out in my banging head why I am this unwell. What is making me feel this way? That’s what I really want to know? However I don’t have the energy or strength to work it out.

My blood pressure started to drop last week so I went to the A&E and was given an emergency dose of Cortisol. This really helped me. For a short few hours I felt much better. Still exhausted, but the dizzyness and nausea stopped. I was then admitted into Hospital.

The MAU ward was extra busy. The Nurse was upset telling me that they were overflowing and that they were now being asked to take on not only patients from Chorley but anyone from Preston needing admitting. The Doctor came to see me. He said, why are you here? I thought that was a little obvious. I was heading towards a crisis and needed to stop it.

I was told “your blood test results are normal”.  They always are when I’m admitted. You see I have secondary Adrenal Insufficiency not Primary!

Someone with Primary AI Addisons Disease, struggles to make Aldosterone in addition to Cortisol and when going to hospital, they usually have salt levels which are out of wack.

I am not primary AI, I’m secondary and this means my salt levels and Aldosterone is usually okay. I may be dehydrated but generally it is just my cortisol which is low. Yet they never test my Cortisol when I go into hospital.

The Doctors always seem to look at my salt levels and treat me as a primary AI/Addison’s patient. If my salt levels are okay, (Which they generally are) then they assume my Cortisol is okay and send me home.

Obviously my Cortisol levels were not okay, but after a IV shot of Cortisol, which I’m generally given in hospital, my body improves for a few hours and I’m sent home only to feel sick and unwell again once at home.

So when I was last admitted into hospital, the Doctors had too many patients and needed to send people home as quickly as possible. They sent me home after my “salt levels” appeared normal and told me to remain on a single dose of medication.

Actually- when you are heading towards crisis like I was, your supposed to double dose for 3 days afterwards. I was told, just remain on the single dose and wait for your appointment with the Endo team in March.

Cortisol:

  • helps maintain blood pressure and cardiovascular function;
  • helps slow the immune systems inflammatory response;
  • helps balance the effects of insulin in breaking down sugar for energy; and
  • helps regulate the metabolism of proteins, carbohydrates, and fats.

Without Cortsiol you can go into coma, cardiac arrest and die.

My Cortisol levels are not right. I’m so ill and yet the Hospital seem to think i’m fine. Of course 2 hours after having a 1oomg IV of Cortisol I am fine, but what about when that runs out? They send me home before this huge emergency dose runs out and hope I don’t return!

So I’m left at home to try and get by but I still feel ill. I go to visit my Doctor. I make an emergency appointment. My Doctor is annoyed with me and says, “Why didn’t you make a routine appointment? This is not an emergency if it’s an ongoing issue”.

Actually it is urgent as I’m feeling like collapsing and barely able to stand. I’m told to wait until my Endo appointment in March.

I am waiting for my Endo appointment. However, this is always the answer….. “Wait until your Endo appointment” and when I finally see the Endo, I don’t get the help I am given, nor the help I am promised.

I’ve had Endo appointments which have been cancelled and rescheduled many months later. I’ve turned up and been told based on the last blood test you don’t have low cortisol! I’ve been told wait until we sort out the Growth hormone. Ive been told, “we will do a day curve” and then that was never done.

I am seriously expected to stay home weak, in pain and nauseous and to wait months to get support.

Every time I see my Endo, he says, we are not worried about your Cortisol levels. We want to focus on your Growth hormone”. Well…I am worried about my Cortisol! Not anxious worried, more sick of being sick worried and I’d like more to be done to find out whats going on or more support to feel well.

For me when my Cortisol goes funny, it will take a month or so to recover and by then it has gone funny again.

Do I just give in and accept this is how life is. Am I supposed to just accept that I am sick and nauseous and dizzy and just live this way as the Endo suggests.

Or do I fight to get better support and treatment? There are many I know with this illness. Some suffer day in day out like me, some are well managed and appear to have really great Endocrinologists. Is my health and quality of life dependent on the Endo I see?

I’m saving funds to see a private Endo..this is taking time. It’s a slow process. I want to try out the Adrenal Pump which has worked wonders for quite a few people I know. It’s no quick fix and comes with its own difficulties but each and every person I have spoken to say they would NEVER go back to tablets as the pump gave them a much better quality of life.

I’ll keep my fight. I’ll keep saving for a private Endo and in the meantime, I am waiting to be transferred to a new hospital and a different Endo Team who I hope may want to do more to help me.

It’s no fun being sick. I want to be well. I want to cook with my child again and spend more time being normal. I want to go out and walk to school, go shopping, have fun without feeling like throwing up.

I want to be able to blog without feeling sick each time I write, like right now. It sucks. Some have said maybe stop blogging and simply rest. I have seriously reduced my blogging massively.

I don’t want to quit and I wont but I am going to have to continue to cut back. I’ve fought so hard for one year to be the blogger I want to be and but unfortunately this illness is affecting my whole life.

I want a better life for me and my child and my husband. I am going to be starting a new medical fund project on Just Giving and try to collect what I need to help me get well as well as save every spare penny I can.

I love blogging and I don’t want to waste my talents. I’ve found something I’m really good at but this is the reality of living with Adrenal Insufficiency and until I get better support I will have to accept being sick all the time.

I’ve hardly spent any time with my little girl since Jan. It’s not fair on her. The NHS do give Adrenal pumps to some children with the illness to help them have better quality life’s (and so they should)…but not to Mother’s and that is so wrong! Yes I am sick and disabled and as a result unable to pay out for private medical care but I was once was a teacher and have contributed to society.

I have the ability to contribute again, to inspire, to earn, to pay taxes and I feel I deserve to be given the best medication to have a chance to do this and to raise my child and be the Mother I want to be

So I’ll fight on at a pace and level I can. What more can I say?

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18 Comments

  1. I’m so sorry to hear that you are not well. 🙁 I hope there is something that will help you soon – it’s very frustrating to hear there are options for children – but not for adults. 🙁

    #KCACOLS

    1. Yes that upsets me too… As much as children’s health is important It is unfair to not offer this to adults because at the end of day we are all individuals and all deserve medical care and i worked as a teacher and contributed before illness struck!

  2. I feel your pain im just barely surviving myself and recently switched to a teaching hospital and have an appointment at the beginning of March so hopefully can get back on track.

    1. I hope you get better care! It’s a real problem for people with this illness. there is just not enough info taught and i genuinely wonder how many days doctors spend learning about this while in uni!

    1. It’s really hard and I’m struggling and not sure how to manage this but to sleep all day and rest and thats my way of getting through but surely something can be done? I hope so! Angela xx

  3. A lot of people including me are in the same boat. I have secondary AI and cannot find a good ENDO to save my life. I have several different autoimmune diseases before I ever had AI and some other problems. I see 5-6 specialists and the only one who is really any good is my Neurologist, in fact she figured out my AI diagnosis before two different ENDO’s did. Hospitals don’t really know how to treat it depending on who is on call. There is one doctor at one of my local hospitals who does check cortisol levels and also goes off of your blood pressure and other symptoms. But most ER doctors are clueless. Shoot most specialists are clueless. Very few doctors that I have seen actually PRACTICE medicine anymore. I think they don’t know near as much as thy pretend to know about this and many other diagnoses and I wish they would just level with us and tell us that. We can teach them a lot if they are willing to listen. Just like they can teach us a lot if they are willing. That’s what makes my Neurologist so good and why I have so much respect for her. I hate to see other people going through this but at the same time it makes me not feel so alone!

    1. i’m so sorry to hear this but it is an issue in many places and ive been told by so many people that they are experiencing the exact same problems as me.

  4. Oh Angela, this is really sad!! It is just so upsetting reading how you feel and all these continuous issues that you have with the hospital. It must be very hard trying to better but not finding the correct help. I really wish you all the best and that you can find some proper help soon. The idea of a private Endo sounds like a good idea. Fingers crossed you can find more answers soon. Thanks so much lovely for sharing this at #KCACOLS. I would love to see you again on Sunday of you are up to some blogging! 🙂 x

  5. Angela,
    Did you ever find any more out? I was diagnosed in December and feel a bit better on prednisone, but still feel tired & weak all the time. Some days just have no energy to hardly walk from the living room to the bathroom. I am thinking maybe I need a different Endocrinologist, but they say only 1 in 100,000 people have it so not sure that is possible to find one without going to a large city. My endocrinologist told me to look on line to read about it… and can’t really find all that much.
    Hope things worked out and you have gotten help!

  6. I’m so sorry to hear about your illness and can’t begin to imagine what you must be going through but keep on fighting and it will all be worth it in the end

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