Adrenal Insufficiency, The Adrenal Pump and Cortisol Day Curves
Well it’s been almost 3 years since I was diagnosed with Adrenal Insufficiency and it has not been an easy road. For those of you who have not heard of the illness, Adrenal Insufficiency is a condition where the body fails to produce enough Cortisol the “stress hormone”. I am dependent on steroids to live each day and under certain stresses, such as infections, emotional stress, car crashes and air travel I need to increase my steroid intake to cover the amount of Cortisol my body needs.
It’s never easy replacing the body with the right amount of cortisol. There is no measuring stick like a diabetes monitor and often you simply have to go by how you feel. Being low in cortisol can cause life threatening symptoms and has killed a number of my friends who suffer from the condition.
Adrenal Insufficiency can be hard to keep under control. You never know how much stress your body will be under each day. You never know how much Cortisol is being used up. It is a constant game but not a fun game, a game full of headaches, fatigue, pain and dizziness. A game I do not wish to play but a game I will win.
How do I beat Adrenal Insufficiency? I can’t get rid of it. I’m stuck with it for life. All I can do is learn to manage the condition the best I can. Regular Cortisol Day Curve Tests can help an Endocrinologist to monitor whether I’m on the correct dose of medication.
Sadly I’ve only ever had two Day Curves in 3 years. That’s not good for me. My Endo said he would arrange a third one last year but he never did. I don’t know why- but DAY CURVE tests help to see how much Cortisol is being used up at certain times in the day. They give the Endo a clearer picture of how much medication is needed for a patient. I am at the mercy of the NHS until I can save for private treatment.
My Endo has failed me in many ways. I went to hospital with Adrenal Crisis several weeks ago and I did not even see the Endocrinologist. I am still in shock at this! Each day I was told I was too unwell to go home. My Blood pressure was dangerously low and I was told I had to see the Endocrinologist to make sure I was on the correct medication.
No Endo was available and on day 8, when I was no better than day one I was sent home and told to wait for an appointment in the mail. I waited and have been given an appointment for 31st August. Thats 3 months! Really! I was placed on a too high dose of medication for 4 months. Last time that happened I gained 6 stone in the same amount of time because my dose was way too high.
The general doctor on the ward said, it is better to send you home on too much than not enough and you can see your Endo as an outpatient to check the level you need to be on. Of course being too low on Cortisol is bad, it causes serious issues but being on too much is bad too. I have rung my Endo Secretary raising my concerns but still I hear no response.
Too much steroids can cause a moon face, weight gain, place me at risk of diabetes, cause fatigue, muscle atrophy, weakness, bone pain, vitamin D deficiency and a hump neck. These are just some of the Cushing’s symptoms when on too much medication.
It’s a fine balance between too much or not enough Cortisol. I will always be over or under replaced and it’s not goo. The best treatment to deal with this is of course an Adrenal Pump which mimics the natural Cortisol circadian rhythm, releasing cortisol in the optimal amounts 24 hours a day.
I have tried hard to find an Endocrinologist willing to listen to me about the Adrenal pump. I’m given excuses. “It’s only for kids”, “there is not enough research”, “It’s too expensive”. I understand more research needs to be done to bring this technology into mainstream NHS and I praise those doing the work in particular Professor Hindmarsh who has successfully treated many young children with CAH and Adrenal Insufficiency.
Professor Hindmarsh’s research demonstrates that the Adrenal pump helps improve fatigue, headaches, pain and so forth and many parents of children and some adults who use the pump have personally told me that the pump has changed their quality of life, kept them out of hospital and made life more bearable.
I’ve read the research available and it’s all positive. I’d love the opportunity to use an Adrenal pump. Not every one with my condition will even need continuous hydrocortisone therapy. Some might even be happy on tablets but on tablets quality of life for some can be very poor. That is the case for me. I am often over or under replaced , in and out of hospital and my stomach appears to be picky, sometimes absorbing my meds and sometimes not. Not to mention the stress on my stomach and liver taking steroids several times each day.
I cannot wait another three years to get better treatment. I cannot have appointments set for 4 or 5 months down the road when I am incredibly sick now. I cannot sit and wait to see a specialist to be told yes they will do a Cortisol test and then the Endocrinologist not follow through. I cant sit back and no do nothing. I have to fight Adrenal Insufficiency myself and get the help I can because the team I am seeing are failing me. It should not be like this on the NHS, a system meant to be equal for all but it is.
So, I have organised a Cortisol Day Curve in a hospital in Manchester. It has taken almost 16 months but I am finally going to get one. This will help determine what my ideal tablet dose of hydrocortisone is and prevent unneeded complications to my health.
According to NHS criteria this should be checked much more regular but there are too many patients and not enough nurses and so I wait patiently. The only issue I have is not being on the right medication which can and does make me seriously unwell.
I found a specialist Doctor in London who I know could potentially really help me but the cost of travel, accommodation, repeat appointments and tests are expensive. Also I need to save extra for the adrenal pump. I am not going to give up. I will do it. I figured I need about £9,000 to be able to get all the treatment I need and cover two years of medication. Hopefully I can do it this year or next and not when Sylvia is grown up. If I had a less rare condition I would get better treatment. It’s not fair on my child and if I had more money I could be much better much faster.
I’m going to make a Fundraising plan to raise the money to get well. I am still trying to be seen via the NHS but I keep getting given appointments which are cancelled or don’t go anywhere. I get promised tests yet they are not done and again I wait.
I am going to find a way to find the money I will need for private care and the Adrenal Pump and monthly medications. Once it is set up I will be much better. I’ve seen it for those adults fortunate to be using an Adrenal pump. The adrenal pump changes quality of life. It does not make you better but it allows you to function more like a human than a sick person laid in bed and using a wheelchair on and off.
The NHS wont fund the pump or medication, which is rather silly, it is cheaper than one hospital stay and I’ve been in hospital 22 times since diagnosis. It makes no economic sense.
I have to find the money myself and I will do my best to get the best treatment for me I can. I cant wait around another 3 years. My child is missing out on too much Mum time and my life really does suck being as sick as I am.
It is time to make a stand and fight for what I need to get well. It is time to shout out and fundraise and save and do all I can. I will not sit back and let Adrenal Insufficiency win.
When there is a illness and a treatment to improve quality of life then it should be available to all. It is not! It is available to some kids but not to me as an adult.
I’m a mother and my health affects a child. This treatment should be equally available for children and adults, be they single adults, parents, mothers, teachers.
The Adrenal Pump should be and hopefully one day will be a treatment available to those with Adrenal Insufficiency and I will fight my best to get this and improve my quality of life.
I will wait for my next NHS appointment in 3 months and hope being on the wrong medication dose wont give me over or under replacement issues..although the reality is it will and I will suffer for this. Until then I will continue to try and contact my Endocrinologist and write to the NHS and set about making a fundraising plan because sadly money would change everything.