The Stages of Grief I Went Through to get a Cortisol Pump in Australia

The good news is that I am cortisol pumping in Australia and I didn’t pay for it all myself! The bad news is that this journey involved dealing with a lot of grief from the Australian healthcare system. I faced objections, misinformation and denials. I had to ask others for help. I switched doctors multiple times and travelled interstate. I did all my own research. I waited years. I went through testing and I knowingly made myself feel dreadful.

Mine is a story of triumph over systems and mindsets that are not set-up to support new or rare treatments. I share my experiences in the hope that they make your path less grief-stricken. I believe that the more of us that are successfully and openly cortisol pumping, the easier it will be to turn cortisol pumping into an accepted and therefore accessible treatment in Australia.

Stage 1: Shock

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After being diagnosed with Addison’s Disease and being told that I would take one magic pill a day and feel better than I had in over a decade, what came next was an earth-shattering shock for me. Yes, I had a diagnosis of Addison’s Disease and steroids had literally saved my life. But now I felt sick all of the time. Every. Single. Day. I couldn’t work. I couldn’t exercise. I could barely leave the house. What was I supposed to do?

I joined a Facebook group called “Living with Addison’s Disease”. I discovered that “everyone else with Addison’s is doing really well on tablets” was untrue and the treatment I was on of taking hydrocortisone (hydrocort) tablets twice a day was outdated and actually unscientific.

I learnt that the gold standard in treatment for Addison’s Disease comes from the work of Professor Peter Hindmarsh, a paediatric endocrinologist from the UK. He had revolutionised the treatment for Addison’s Disease by basing the replacement of missing cortisol on natural rhythms, rates of metabolism and cell requirements. He’d pioneered the use of an insulin pump to continuously infuse hydrocort directly into the blood stream – a delivery system that is significantly closer to natural cortisol production than tablets.

Stage 2: Denial

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Now I knew that cortisol pumping was a potential treatment, I needed an endocrinologist on board to support the process. However, none of the endocrinologists that I saw believed that my symptoms were related to Addison’s Disease. None of them seemed familiar with Professor Hindmarsh’s work. They offered me a big bunch of objections and unhelp. I was denied access to pump treatment for the next 3 years by multiple endocrinologists.

Stage 3: Depression

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Whilst my doctors were in denial, I persisted in trying whatever treatment alternatives I could access. The treatments included:

  • Taking hydrocort tablets 3 and 4 times a day on different schedules: No improvement. I’d later discover that 4x a day was insufficient for my metabolism.
  • Taking DHEA: Improvement in sex drive and muscle strength.
  • Taking the long acting steroid pred: Major improvement initially. Became less effective after I was taken off the Pill and endo #3 refused to increase my steroids (in his textbook, Prof Hindmarsh explains and demonstrates how estrogen significantly impacts cortisol levels).
  • Taking a slow-release version of pred tablets at bedtime (I had this made up at a compounding pharmacy): Improvement in morning symptoms.
  • A variety of different diets & pro-biotics: A low FODMAP diet greatly improved some gastrointestinal symptoms.
  • Graded exercise exposure: Made me sicker.
  • Cognitive behaviour therapy: Made me sicker.
  • Taking a delayed-release version of hydrocort tablets at bedtime: Unable to access as product withdrawn from the Australian market due to a lack of sales.
  • Taking the super long acting steroid dexamethasone: Not supported by endo.
  • Taking a higher daily dose of steroids: Not supported by endo.
  • Taking steroids by injection: Not supported by endo.
  • Using a cortisol pump: Not supported by endo.

Trialing different treatments with little support from my doctors or success was a depressing stage to go through. The lowest point was being hospitalised with a failing liver after a bad reaction to an antibiotic prescribed by an Integrative Health GP to rebalance my gut bacteria.

Stage 4: Anger

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Pretty soon my depression dissolved into anger. I was angry that I wasn’t able to access treatments that other patients around the world had experienced success with. I was angry that I was potentially wasting years of my life being unnecessarily sick and disabled. I was angry that I’d spent time and money trying treatments unnecessarily.

With this anger came a dramatic shift in my approach to doctors – I became increasingly assertive and empowered. Instead of spending months on a waitlist and attending multiple appointments only to discover they were unhelpful, I started screening them first.

I wrote to a prominent group of local endos, requesting to see someone who was willing to think outside the square. When they recommended their endocrinologist who ran a “life-style clinic” predominantly for people who were over-weight, I rage quit.

I wrote an email to the UK expert in cortisol pumping requesting his help, offering to fly to the UK if necessary. He came back with a name of a local endocrinologist – Endo #4.

Tip: If you join the Facebook group Adrenal Diseases Support, you can see their list of pump-friendly endos in countries other than US here or in the US here.

Stage 5: Bargaining

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Endo #4 initially informed me that I’d be paying for my pump and supplies out of my own pocket. However, I met a cortisol pumper who’d had her pump paid for by private health insurance and who was getting her consumables heavily discounted through the National Diabetes Services Scheme. I wanted what she was having.

So I went on a fishing expedition. I found this list (“other”) of Australian government approved insulin pumps. I contacted each supplier on the list and asked them (a) what they knew about cortisol pumping, (b) how many patients with adrenal insufficiency were using their pumps, and (c) what deal they could offer me if I needed to pay privately.

The responses that I received ranged from no response to let’s meet. Many people that I spoke with initially had no idea what I was talking about. I often needed to educate them about cortisol pumping and push them to find out more.

One pump sales representative told me about an endo interstate who was keen on offering cortisol pumping in their clinic. This is how I found Endo #5.

I applied to the National Diabetes Services Schedule to receive discounted consumables via a special application to the Department of Health. My application was denied on the basis that I don’t have diabetes. I have no idea how the other pumper got this.

I was able to negotiate discounted consumables via a research grant with one of the pump suppliers – Medtronic. Since they also offered me a warranty, it was an easy decision to get a Medtronic pump.

Fortunately, my private health insurance policy had cover for insulin pumps. Unfortunately my funding application was denied on the basis that pumps weren’t designed for and can’t be calibrated for hydrocortisone (both untrue). We appealed. The appeal was denied on the basis of “off-label use”.

I switched my policy to a larger insurance company who I heard had approved pumps for others with adrenal insufficiency. This application was approved.

You can see my cortisol pump costings here.

Stage 6: Testing

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In order to conduct the pre-testing for the cortisol pump, I had to switch from prednisolone (gives inaccurate blood cortisol test results) back to hydrocortisone tablets. Given how deadly sick I’d been previously, I was terrified of going back on hydrocort tablets.

I insisted on taking them 4x a day, but still felt dreadful. The smallest stress reduced me to a crying mess, and I was continuously nauseated, exhausted and sore all over. I was lucky if I could leave the house once a day. I ended up stuck on them for 12 months awaiting the pump.

I had a 24 hour day cortisol curve analysis completed to provide eevidence that tablets weren’t working for my body. This test involved an overnight stay at a hospital, a cannula being placed in my arm and taking my tablets as normal. Blood cortisol samples were taken every hour during the day and every 2 hours overnight for a period of 24 hours.

Results from the test showed that even on 4 doses a day of hydrocort tablets, I was experiencing 3 periods a day of extremely low levels of cortisol. My body was metabolising the tablets very quickly – their effect was wearing off after only a few hours.

I started taking hydrocort tablets 6 times a day, every 4 hours, including at 3am. I immediately felt significantly more stable and less sick than I ever had on hydrocort tablets. Surely now I had the evidence needed to start on the pump?

However, progress on getting the pump stalled for months. This was because we were trying to set-up a non-conventional treatment in a public hospital setting. Red-tape, politics and frustratingly short appointments slowed everything.

I realised that I’d been gifted an alternative – the lead I had on the interested interstate endo. I started seeing endo #5 as a private patient (mostly via Skype). Compared to the public health system, pump progress was now swift (endo #5 had more time to devote to setting up procedures, greater flexibility to negotiate across hospitals and clinics, and a clinic of supporters).

Within a few weeks, I’d flown to Queensland for a cortisol clearance study. This involved staying in hospital overnight, withholding my night-time hydrocort doses (and yep, waking up felt horrid), having two cannulas inserted in my arms, being injected with hydrocort at 7am (this felt awesome), and blood sampling at 5-30 minute intervals for a few hours afterwards. These blood samples are used to see how fast the body processes hydrocortisone.

Stage 7: Acceptance

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My clearance test results were sent to the UK expert to calculate my pump rates. His response was “I can see why she’s needing to take hydrocort tablets 6x a day; she’s an ideal candidate for the pump”. I had finally found someone who believed my experience that the conventional treatment for adrenal insufficiency was not working for my body. Even better, I was being offered an alternative treatment.

Hope

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After all of that grief, I really hope it’s been worth it! On the eve of travelling to get my pump in March 2019, I wrote about my hopes and dreams for the cortisol pump. You can now meet my new pump, Phillip, here.

I’d like to see cortisol pumping available to anyone with adrenal insufficiency who’s not doing well on tablets – not just those of us who are privileged enough to be able to self-advocate for and afford it. I hope that my story helps to make your path to cortisol pumping easier Xx.

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6 thoughts on “The Stages of Grief I Went Through to get a Cortisol Pump in Australia

  1. Hi Charlie –

    I hope you don’t mind my contacting you via email – wanted to share some thoughts I’d rather not have posted publicly (they might get me blacklisted in the public health system that I have to rely on!).

    Thanks again for all the info you’re sharing – this latest is really helping me fill in some of the gaps in the process – although I expect my journey to be a little different. eg: no private medical insurance – will either have to sell off the family silver or dip into my meager retirement savings – I figure at the rate I’m declining I won’t reach retirement age anyway so no use dying with money in the bank!

    Second major hurdle is finding an endo willing to undertake the process in NZ – I contacted the Dr listed on the ADSG website link that was on your blog (thanks for that) – however despite 3 phone calls and two emails since May 2 he has ignored my two questions: A. Is cortisol pumping currently available in NZ? B. Was he willing to treat someone (privately) from outside his geographical area? (I’m about 2.5 hrs drive from his clinic). It took the second email to even elicit a generic response from admin that the first had even been received! I know these specialists are ever so busy but surely he could have got an assistant or clinical manager to reply that I might hear in due course or even a simple No to both questions would ease the stress of waiting.

    I’m also trying to arrange a private appointment with the endo I have seen most frequently at the public hospital (4 endos & 2 registrars in 9 years since diagnosis) – they are so short staffed and under resourced that my regular Addison’s management appt. was 6 months overdue and I only got that because I phoned for an urgent appt. when I knew the endocrinology clinic was scheduled because I had a severe case of edema in my feet & legs (steroid side effect!). Got that sorted but then told that they would count that as my regular appt. ie: another 18 mth wait for another chance to discuss anything else. I don’t blame the doctors for this – I blame the politicians for years of under-funding and the Health Boards for poor management & planning.

    Also the way the the Health System is organised in NZ is in 21 District Health Boards (ie: there are invisible boundaries running all over the place and if you try and step over the line they get bossy and order you back). Anyway enough gripping about our system – just wanted to give you an idea of what I’m dealing with. Your ‘7 stages’ post is a wonderful demonstration in perseverance (and getting stroppy when you need to – something I may have to do more of).

    Getting Solu-Cortef as an ongoing prescription may also be a problem – currently listed on NZ Pharmaceutical Schedule as being available only with a “Practioner Supply Order” and limited to 5 injections at any one time. I’ll have to look into getting a special approval from the Minister of Health! (probably involving lots of paperwork, numerous refusals and other BS). On the plus side it’s only $5.30 per vial here (plus there’ll probably be a prescription charge) I currently get given 2 free of charge by the hospital for my emergency kit.

    It’s interesting to read your discoveries and comments on Dr Hindmarsh’s dosing schedule – particularly how every individual is different – that ties in with other info and comments I’ve read on other websites (Clearly Alive). I also came across research that indicates there may be a genetic factor involved in cortisol metabolism in Addison’s: You may already have found this article. Links to : Abstract version Full Version

    My endo told me I’m the only Addison’s patient she’s seen who seems to have problems – (ie it’s not the Addison’s but me!) I also have a theory that how late (or how far you were into a crisis) before being diagnosed and starting treatment has an an ongoing and sometimes permanent effect on future health levels.

    Sorry for prattling on – higher morning dose tends to make me a bit OCD – just realised it’s taken me a couple of hours just to write this and is time for my next lot.

    Thanks for sharing. Cheers Kathy

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    1. Hi Kathy.

      Sorry that I’ve taken a while to reply.

      Wow, you’re having a very similar, challenging journey towards pumping as I had. I had no idea that the New Zealand health system was so different to ours. I’ve heard of a couple of people struggling to get pumps there but didn’t know exactly why.

      I find it really frustrating to hear that health systems are getting in your way. You sound like you are working really hard at it though. Have you come across any cortisol pumpers in NZ? Someone must have added that endo to the ADSG list. Perhaps try calling his office to find out how to contact him? The other option is to ask Prof Hindmarsh if he knows any other endos in NZ. He responded to me via email.

      Similar to you, I had been told by my first three endos that all of their other patients with Addison’s were doing great. It doesn’t inspire any confidence that they know what they’ve doing with me! It also makes me wonder how many Addisonians are told that and told it’s not Addisons causing their symptoms which means that the endo never changes their view.

      I’d be interested to hear how things progress. If I hear of anyone in NZ pumping, I’ll let you know.

      Take care and stay well,
      Charlie

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