My Life With Adrenal Insufficiency

Why the Adrenal Pump is a brilliant method for treating Adrenal Insufficiency

adrenal pump

Why the Adrenal Pump is a brilliant method for treating Adrenal Insufficiency

Adrenal Pump for Hydrocortisone Infusion Therapy

Why the Adrenal Pump is a brilliant method for treating Adrenal Insufficiency

Not long after being diagnosed with Adrenal Insufficiency I came across the studies and work of Professor Hindmarsh who works in Endocrinology at the Great Ormond Street Hospital in London. 

Professor Hindmarsh is a brilliant doctor who has worked hard to develop a better treatment for a number of children who suffer from “Adrenal Insufficiency”. In fact some years ago he began to use the “diabetic insulin pump” to treat children with Adrenal Insufficiency. This treatment is called Subcutaneous Hydrocortisone Infusion Therapy and is often referred to as the “Adrenal Pump”. You can read more of Professor Hindmarsh’s research HERE

Although the “Adrenal Pump” is not commonly used in the UK, it is the best treatment option for someone who suffers from adrenal insufficiency because it is impossible to mimic the natural cortisol circadian rhythm using steroid tablets.

Professor Hindmarsh himself stated, ” Mimicking the circadian rhythm of cortisol secretion is the ideal way of treating people with Addisons. We try to do this in a number of ways by giving hydrocortisone orally 3 or 4 times a day but although we try our best to get this correct as possible it is not exactly the same as the normal circadian rhythm”.

So why is this? When you place a tablet into the body, it takes time to absorb. The tablet goes into the body in one huge dose and suddenly drops out of the blood stream 5-6 hours later. Then the next dose is required. For a lucky few, this is sufficient, however for many people with Adrenal Insufficiency having too much or too little cortisol in the blood stream causes serious side effects.

For example, over and under replacement which is inevitable with tablet form treatment may stop someone having an adrenal crisis but result in symptoms such as migraine type headaches, fatigue and exhaustion and for some who’s stomachs struggle to cope with the steroids gastritis. Too much cortisol can cause weight gain and muscular pain, bone weakness and lead to diabetes. Too little cortisol can lead to headaches, stabbing plains in the legs and muscles, weakness, dizziness, low blood pressure, hypoglycemia and of course a life threatening adrenal crisis.

Having the option of the Adrenal pump, a small machine that is able to release cortisol into the body at the ideal rate can (when  used correctly) reduce fatigue and chronic tiredness. It can reduce headaches and other over/under replacement symptoms and in the instance of someone with steroid induced stomach problems, the pump can prevent further damage to the stomach caused by the ongoing ingestion of steroid tablets.

One major benefit of having an adrenal pump is that cortisol medication is released directly into the blood stream in the same way the adrenal glands would release cortisol. When taking tablets, the stomach has to first absorb the medication. it then has to be processed by the liver and finally be placed into the blood stream. This is not the natural way of receiving cortisol and by using the pump one can bypass the stomach and ensure there is 100% absorption of the replacement medication.

During his studies Professor Hindmarsh wrote an article about his use of the ‘adrenal pump” on a number of patients. His findings showed that,

  1. The pump can mimic the natural cortisol circadian Rhythm of an individual.
  2. Using the pump can eliminate periods of “no cortisol” and cortisol deficiency.
  3. Using the pump eliminates the excessive peak of cortisol that is placed in the body first thing in the morning when using tablets.
  4. The pump delivers normal concentrations of cortisol to the body in the early hours of the morning preventing hypoglycemia and giving the body the correct amount of cortisol needed to start the day.

Not only has professor Hindmarsh studied the use of the “adrenal pump”, studies have also been conducted in other countries and there are people using the Adrenal Pump in a number of countries around the world.

What I have learnt about Subcutaneous Hydrocortisone Infusion Therapy

Based on everything I have read and heard, I have learned the following:

  1. The Adrenal pump is not the right treatment for all people with Adrenal Insufficiency.
  2. The Adrenal pump is not readily available to any Adult needing cortisol replacement therapy in the UK.
  3. To get the Adrenal Pump you need to get  a prescription and undergo intensive support to work out the correct dose schedule. This involves undergoing several day curve tests and a lot of tweaking. It is hard work and takes some time to get to the ideal cortisol release settings.
  4. Endocrinologists in the UK are reluctant to use the Adrenal pump. When I have asked why I have been given the following reasons:
  • It is only for people who cannot absorb medication.
  • it is very expensive and costs a lot of money. (In fact if it improved my health and   made me more stable it would financially benefit the NHS as I’d spend far less time going to hospital)
  • People can get by just fine on oral tablets. (Some patients can and many patients     cannot. Many of us suffer day in day out and feel really unwell due to the ongoing     fatigue and low cortisol symptoms.)
  • The everyday Endocrinologist does not know enough about this method of treatment and how to work out the correct formula for an individual patient.

Evidence proves that using the Adrenal Pump will drastically improve one’s quality of life, however there are obstacles in the way stopping people like myself and others who are suffering from leading a much improved life.

In the USA, the Adrenal Pump can be bought privately and used privately with the right Endocrinologist. Not all Endocrinologists use this method but some do in different states. In the UK there are a few people on the Adrenal pump. I’m yet to find however a professional willing to work with adults privately to use the Adrenal pump. Although I’ve been told there is a private Endocrinologist who will prescribe the adrenal pump and work with Adults patients privately, I am yet to find out who this is or where this endocrinologist is based.

So what are the options?

If your in America and you are able to find the right endocrinologist who will prescribe the pump, you can get this on your insurance or if your not covered pay privately, although it would be mega expensive.

If your in the UK, there may be a doctor out there somewhere willing to work with patients but who that is I am non the wiser. If I am unable to convince the NHS Endo team I am under to help me and so far I have been unsuccessful.

I do have the option to fly to America and go private there. However the cost of this is massive.

Part of the problem I have is I don’t have the money to go private. I am in the Public NHS system and although I am supposed to be under a specific specialist/consultant, I end up seeing a different endocrinologist every visit. (Someone who does not know me or know my history). Also appointments are at snail pace. If the doctor wants to see me in 3 months, he ends up seeing me in 6 months. If I need an important test doing, I go on a waiting list for months and then wait months for the result and follow up.

So what next?

For myself, I will continue to have daily headaches. I will continue to feel exhausted and weak, feel over replaced and under replaced and struggle to feel well on a daily basis. I will keep trying to manage my cortisol levels with tablets but…. I will probably continue to suffer and be stuck in bed and the home as going out is too difficult for me with this health condition.

I will keep saving and fundraising for the adrenal pump. I will try to find the Endo in London who works with adults privately. I will raise my profile as a blogger and patient with AI. I will work to lose weight so the steroid medication I need in future is reduced and the cost is reduced.

I have researched the cost of an Adrenal pump and monthly consumables, (needles, tubing etc) and here are the prices:

Medtronic – Minimed 640G

Pump kit: £2995 

Monthly Consumables: £97.90

Annual Consumables Cost:£1,174.80

Total First Year Cost: £4,169.80 (Plus medication costs)

—————————————————————–

Animas – Vibe

Pump Kit: £2,800

Monthly Consumables: £137

Annual Consumables Cost: £1,647.95

Total First Year Cost: £4,447.95 (plus medication costs)

————————————

Once the pump is purchased it needs to be insured under house contents.

This is what an adrenal/Diabetic pump looks like: There are different models and i’ve heard the best is the medtronic minimed. medtronic_devices_520x320_d

Picture taken from MEDTRONIC.

I think the most important thing to say is that the PUMP is not right option for everyone. You have to be willing to work hard to monitor the machine and tweak until you find what works. You have to use needles and be willing to be monitored and work with a Endo. There is a lot of commitment and even then…although the quality of life is improved, life will never be as it once was. You will still have bad days and times when illness strikes but in general using the Adrenal pump is proven to greatly improve quality of life and make an AI patient more stable which in the end improves life quality and life expectancy.

I hope you found this info useful

Angela Milnes xx

 

31 Comments

    1. Your most welcome. There is much research needed to be done and more awareness needs raising to enable those of us who are suffering to be treated better.

      Angela x

  1. Thanks for the post, Angela. I thought I would add some details from an Australian point of view. We investigated this option for my daughter but didn’t go through with it in the end.
    The pump and consumables are not covered in the public health system here for Addisonians. If my daughter was diabetic (and using the same equipment), much of the cost woud be covered. If you have private health insurance, you may be covered but be prepared for a complicated and drawn out application process. It looked like our insurer was going to cover the cost of the pump at least.
    There is also not much knowledge around the procedure and only a few places have used it but there have been trials done and protocols established in Perth and Brisbane.

  2. Hi! I’m curious to know if you have any US doctor contacts. I’m unable to find a person with a pump who is willing to disclose the name of his or her doctor. Thanks, Dusty Hardman contact @ addisonssupport dot com

  3. I have recently been dx with secondary adrenal insufficiency and just started hydro. I may look into a pump down the road but currently have no need.

    1. If you can manage wit the tablets then there is no need…. its for those who really struggle.. there is a group who manage okay and then a group who really are ill a lot and the people i know who have been ill and continuously going to hospital etc, they get well on the pump so it is a winner for these people!

    1. Oh It would be great to talk to you. There are a few of us out there, trying to get this better treatment. I’ll send you a message and we can chat. Angela x

  4. I am very interested in this pump yet Noone I have talked to is aware of it or how to do it. My quality of life has been diminished and I have spent numerous stays in the hospital can you help

    1. Sadly it is the case in many places. My new Endo has no clue either and I’m still trying myself to access this medication. Sorry to hear your having poor health..it’s the same for all of us and I hope one day we can have better treatment. All of us with AI. Angela

  5. Thank you for the information. I am in the US and would love to know the names of doctors that will prescribe the pump. I spend so much time in the hospital that it would probably be cheaper for my insurance to pay for the pump. I have a terrible time with the pills..like a roller coaster all day long. The symptoms are constant and terrible. I mentioned the pump to my endo. She looked at me like I was crazy. She is of the thought that if I take my meds, then I should be fine..doesn’t understand why I still have the symptoms I have. There are people in some groups I am in that are in US and have pumps. It’s hard to get info out of them when it comes to their doctor, but they all seem to be doing much better. I am going to print out the information you posted from professor Hindmarsh and take it to my endo appointment next month. Maybe she will read it. I wish she could feel like I feel for just an hour. I’ll bet she would be a little more interested in helping me with the pump then!

    1. I too struggle to get an Endo to consider the pump. It is a good method however much needs to be done and hopefully more trials and studies so we can one day have the best treatments. It would be even better if they had a cortisol monitoring machine! That would be best but it’s years away.

  6. Can you give me the name and address of any endocrinologist in the US…my son has Addisons and is not doing well…thank you so very much for this hope

  7. I wish you luck. I was able to get the Medtronic pump in the US and the monthly solu cortef covered by insurance, and it has worked out really well. I’ve had it for over a year now, and the ‘inconveniences’ of site changes, filling the reservoir, etc are not inconvenient at all when you consider the alternatives of pills multiple times a day, and a constant gamble how you’ll feel that day. Keep up the battle and I’m sure in good time modern medicine will pay attention to this solution that clearly works, making it available to more people.

    1. RAJ: I was recently diagnosed with AI and I would like to get on the pump to avoid a lot of the problems that oral steroids cause. I live in the United States and I was wondering where you are located and who your doctor is? Was it difficult to get your insurance to cover the pump? A long process? I wouldn’t even mind paying for the initial pump if insurance would cover the medication. I feel like AI needs a support group where we can all share information with each other as this condition is so rare.

      1. There are many support groups online. Check out ‘addisons disease support group’ on Facebook, it has over 5000 members from all over the world.

  8. This is such an interesting article. I am in the US and would love to try a pump, but I don’t think my endo even knows they exist. I do pretty well with the tablets, but I have gained a lot of weight (yet if they bump my dose down even 5mg, my bad symptoms return) and I have some sleep and fatigue issues, which I believe are directly related to the circadian rhythm problem. I did way better on dexamethasone than hydrocortisone (even lost weight), but my doctor doesn’t like dex for some reason. I also doubt my insurance company would pay for a pump because they won’t even cover enough steroid tablets for me to stress dose when needed without a stressful fight every month. They’re awful. But maybe one day… It’d be nice.

    1. Chances are your endo works with the pump for diabetics. Most adult insulin dependent diabetics have the option of having a pump (in the US). It keeps them out of the hospital as well. The “adrenal ” pump is the same as an insulin pump with a change in the medication used. The difficulty is that endos do not have the support or experience to know how much hydrocortisone to prescribe using the pump because it is a small amount per hour. They need to know how to use it and then they need to teach you how to use it. That takes a lot of time and effort. Also, the FDA has not approved the pump for hydrocortisone use so this is considered experimental. That’s the reason people are so reluctant to have their name out there as both using the pump and prescribing it.

      Dexamethasone is stronger than hydrocortisone so is difficult to reduce to the replacement doses needed and it is very long acting. Also, I recently read that in low doses it doesn’t cross the blood -brain barrier so your brain isn’t getting the cortisol equivalent it needs so you can still have symptoms. Some people take a very low dose of dex ALONG with hydrocortisone during the day to get the coverage they need.

      Good luck,
      CJ

  9. I live in Perth Australia and was diagnosed with Addison’s disease in July 2012. I als have hashimotos, autoimmune urticaria and chronic pain. I’m 72 and had been quite active but this disease has been with me for many years before I had a crisis and got a diagnosis. Exhaustion is the main problem at present
    I’m investigating the idea of the pump. I’m fortunate because my Doctor,a professor of endocrinology was involved in the trials with pump some years ago. He is willing to use it to treat me. So we will have a thorough talk about it when I see him in late April. Although expensive the running cost is not to bad. My husband is a reitired anaesthetist so needles etc no problem. Still he does not really understand what it’s like to live with this illness. Three daughters are nurses and show little understanding. It certainly is an invisible illness.
    Thank you for your blog Angela. The Australian Addisons Foundation closed down due to lack of funds. I have never met another person with addisons.

    1. Good luck to you. It doesn’t fix all out issues but has helped make mine more stable and manageable although I am still unwell at times.

  10. Hello Angela, Billie and Jacqui
    This is a great forum. I am Australian and am interested in cortisol pump therapy for my daughter. Could you please tell me the name of any Professor/Doctors who are supportive of this method of medication delivery.

  11. Hi Angela,

    Who is your Endocrinologist?

    I’m UK based and my endocrinologists struggle with balancing my cortisol levels throughout the day/night, a pump sound like an answer.

Leave a Response

Comment moderation is enabled. Your comment may take some time to appear.

Share156
Tweet
Pin19
+1
175 Shares