My Life With Adrenal Insufficiency

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

adrenal pump

adrenal pumpAdrenal 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)

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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)

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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

To Read More about my health Journey visit the Adrenal Diaries.

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