Addison’s disease, adrenal insufficiency, low cortisol, riding and life

Hi all,

Quite a specific question, but this forum is full of supremely knowledgeable and friendly human beings so here goes 

Does anyone have experience with low cortisol or Addison’s disease?

I fully appreciate that is a broad question, but I am at the start of trying to function again following several years of struggles which now appear to be at least in part due to very low cortisol levels.

I have also had two really big crashes in the past 3 years with trauma to my torso, head and neck each time so there might be a head injury or trauma link to the problems.

I have read a lot and feel fairly clued up about general prognosis but what I would really like to know more about are extra things individuals who wish to be more than just “NHS-sit-at-a-desk-all-day” level of healthy 

I am at the early stage with the endocrinologist but am struggling for information on things like supplements (mainly taken following long term mTBI issues- are they good or bad with this extra condition), diet (a lot of changes to help the mTBI are ironically things which work against cortisol production), possible relationship to head injury, maybe help pushing for certain investigations if the cycling crashes might have been a cause or contributor, other hormones or blood tests to look in to… basically anything anyone might have experienced or learnt more than the standard advice?

Interestingly one of the only references I can find to adrenal insufficiency and cycling is a guy in Sweden who actually started cycling to stay active. Even if you take nothing else from this thread, here is a beautifully shot video he produced which describes exactly my experiences, minus the coma, and might help raise awareness of this quite rare condition

https://vimeo.com/276864585

P.S. feel to tell me that starting Corticosteroids will have me flying like Wiggins  I think David Millar previously said he saw more gains than on EPO 

Interesting video – though maybe rather drawn out for anybody without the motivation of finding out about their own health. There is a text summary here https://addisons.org.au/the-last-remaining-light-an-addisons-disease-documentary/

Have you been to the Addisons website? It does have a lot useful information. This page gives advice on exercise and medication dosage  https://www.addisonsdisease.org.uk/how-to-stay-on-top-of-exercise

I have also found the Mayo Clinic site useful https://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/syc-20350293

I have Secondary Adrenal Insufficiency – from the removal of a pituitary tumour 7 years ago – so not as serious but treatment and many of the symptoms will be similar. As you say it is rare – my GP (on the edge of retirement) had never had a patient with the condition. He did reassuringly advise that there was no reason not to expect a long and healthy life – after all President Kennedy had Addison’s – tho maybe that wasn’t the best example!

If you have been diagnosed with Addisons then  treatment will probably be a lifetime daily dose of Hydrocortisone Unfortunately that’s designed to replace an adrenal insufficiency so unlikely to have you flying like Wiggins ?- but if you don’t take them then you will have an adrenal crisis – as described in the video – with potentially fatal results. I have read that people have used supplements in attempt to come off the steroids – with fatal results.

Feeling better with exercise as Martin discusses exactly mirrors my own experience – I abandoned a scepticism of Yoga and Pilates and started following YouTube videos on a daily basis. Supplemented by biking and a lot of walking (easier to get out the door and walk a hill – especially where I live. Start small and build up. The hardest part is fighting through fatigue or inertia to do them. As with any exercise too much too soon and you will lose incentive.

I would say that endocrinologists are becoming a lot more switched on to Addisons than maybe 10 years ago – but dosage is definitely trial and error – I would love an equivalent of the Freestyle Libre that diabetics can use to be able to monitor Cortisol levels. But yep information on a higher level of fitness is very challenging – I like your “NHS-sit-at-a-desk-all-day” definition. Added to which if you stay fit and eat well you will have a classic invisible illness. My Endocrinologist is due to retire – perhaps her replacement might be  more exercise orientated.

I do know know one guy who was back marathon running after starting treatment but the illness is rare and it is difficult to get people to discuss their problems – like me their answer to “how are you feeling” will be “fine”!

No idea on supplements I’m afraid. We eat a good diet so I rely on that. My endocrinologist did advise my wife to lock the fridge – fortunately that has not been too much of an issue – though sometimes the urge to binge is overwhelming.

One big issue is control of stress – I can easily spiral into a completely uncontrolled mimicry of Tourette’s over very little so have to practice remaining calm. Even then I regularly have to apologise to my wife – how she puts up with it I am not sure.

Best of luck with your journey!

If you have primary Addisons then you’ll need mineralocorticoid (Aldosterone) replacement plus physiological corticosteroids.
All else being equal with effective treatment you should live a virtually completely normal life without reduction in life expectancy. So no reason why you wouldn’t be able to exercise normally etc.
Sounds like you need an accurate and definitive diagnosis first??

Not Addisons but I had both adrenals removed it 1989 due to tumours.

It’s a wild ride at times, getting bluelighted to hospital never grows old 😉

Definitely read up on the recommendations on the Addisons Self Help Group re exercise – I used to bail out on long ride and needed to recover and limp to the finish. Using the guidelines as a starting point has made a world of difference.

I now carry an emergency kit at ALL times and those I’m riding with know what to do

Thanks @Steve_B

I have seen the links and general information.

I would love an equivalent of the Freestyle Libre that diabetics can use to be able to monitor Cortisol levels. But yep information on a higher level of fitness is very challenging – I like your “NHS-sit-at-a-desk-all-day” definition. Added to which if you stay fit and eat well you will have a classic invisible illness. 

I am keen to not repeat my NHS head injury experiences where I was told many times by various doctors that there isn’t anything you can do except rest and “normalise lifestyle to reduce fatigue”. After 5 months of poor vision, constant dizziness, incredibly poor mood and generally inability to much at all ticking every concussion symptom, I finally tracked down a sports consultant and concussion physio who changed things completely by just giving a sh1t and digging a little deeper.

treatment will probably be a lifetime daily dose of Hydrocortisone

I am finding myself often unable to stay awake past 10am and it feels like my entire body shuts down like I have no say in the matter. I might often be very conscious lying down but nothing in my body will work. If I try to push through I have had a few events of going in to an uncontrollable fever (sweats and feel freezing), HR goes nuts, stomach goes nuts…. which on the back of 2 cortisol tests coming back very low seems like it could be very avoidable with a £1.20 tablet which is frustrating!

Thanks @andylc

Sounds like you need an accurate and definitive diagnosis first??

Absolutely, and given the long wait for an endocrinology appointment I am keen to get as much out of the contact time as possible which is my main reason for these questions.

As above, I am barely functioning, have 2x 9am cortisol blood tests which appear very low (at least against the scales I can find on the NHS site and elsewhere) and it seems like the solution could be very simple (and cheap) but the process is potentially long. Anything I can do to be extra prepared I will take 🙂

Thanks @shoko it is encouraging to hear you have found a way to get riding again

Definitely read up on the recommendations on the Addisons Self Help Group re exercise – I used to bail out on long ride and needed to recover and limp to the finish. Using the guidelines as a starting point has made a world of difference.

It is an amazing time and we are really lucky to have so much information and connection to others anywhere in the world.

Kind of ironically, my wife has actually started working with a pituitary damage charity on the stress reduction and managing daily stresses side of things. They seem to be learning more from each other than they have had help from the formal route as it doesn’t seem too common.

I also have a child with a rare disability so really digging around for extra information is old news to us 🙂

If you guys don’t mind, I would be keen to hear how the diagnosis to treatment went and if anything was learned along the way? I fully appreciate these are all different cases and causes to come to a similar end point.

I am mainly wondering things like, from picking up the rough problem were you able to start the treatment quite quickly or did the root cause need to be identified first? I don’t want to get too internet doctor on this and rely on hearsay from situations which may not apply to me, but I am curious if help and change might be soon after getting to the endocrinologist or if I should brace myself for the next lengthy spell of letting the various required steps of the health system play out

Tbh it seems crazy that the diagnosis should take a long time. It shouldn’t take an endocrinologist to do an ACTH stim test – surely a GP can do this??
PS I’m talking as a vet so not entirely informed opinion…
If Addisons is suspected they shouldn’t be fannying around, since an Addisonian crisis in untreated individuals is not rare and can be very dangerous.
I’d be kicking up a fuss and demanding at the very least a prompt ACTH stim test.

What he says. Though better put! Is your  blood test through your GP. Low cortisol should be an immediate flag to investigate an adrenal issue I would have thought. Or maybe that’s were you are at and waiting for an endocrinologist appointment. If I was at that stage now and if there was no sign of an appointment I would be considering going private for peace of mind

in my case I didn’t get a pituitary diagnosis until the tumour affected my vision and the optometrist referred me to the opthamologist- who referred for an immediate MRI. Before that I had severe fatigue- but then who doesn’t. Never had cortisol tested but neurosurgeon reckoned I would have had affects for 10-15 years . Sounds like your wife will good knowledge of the pituitary journey after that.

Agree on avoiding dr Google! and daily steroids do have downsides

Edit: Addisons really isnt something you want missed – can you not go to a&e? I have got Addisons, had it since I was 21 and I am now 36. It took nearly a year from symptoms starting to actually getting diagnose (despite many trips to the GP’s) – luckily a locum docter eventually sent me to a&e and it ended up being a very close call! I had lost around 20kg and couldnt walk by this point I was immediately pumped full of hydrocortisone via iv for a few days and then transitioned over to oral meds (fludrocortisone and hydrocortisone) they did swap me to predisnolone for a while (which gave me alot of stretch marks) but swapped back to hydrocortisone as it was “less synthetic” and more like a natural replacement to what my body could no longer produce. Once I was diagnosed it took the doctors a while for me to get the right dosage of hydrocortisone but now sorted I pretty much live a normal life and have been able to do a fair bit of cycling and maintained fitness, I dont think addisons has held me back sports wise. Carrying extra pills and the injection kit is a pain but I have never had to inject luckily. I don’t take many supplements other than vit d and calcium, my bones seem to be fine when checked and I am on quite a high dose (double the average).. you will get cramp more easily as I can’t store salt but its easy to keep ontop of with salty snacks or adding a bit of salt, sugar and squash to your bottle when cycling. Also you need to be aware of sickness and stomach bugs, I have been to hospital a couple of times when unable to keep meds in, but only a handful of times. Hope you get sorted out soon

The extra blood tests have been a frustration. The NICE guidelines for next steps, treatment etc seem quite straight forward (and are readily available online) but the extra bloods have been refused by my GP despite me asking twice. Even getting the 9am Cortisol repeated took 2 weeks for a nurse appointment to be available.

I don’t want my endocrinology appointment to be another delay of bloods and no action followed by waiting for yet another appointment to review.

@Steve_B I agree on the private route. I actually booked an appointment last night for 10 days time. GP estimated an urgent endocrinology referral is currently taken 3-5 months!

I brought up adrenal crisis, especially since I had very similar sounding symptoms in the past few weeks, and the response was “your body will tell you when you need to go to hospital”. Such awful advice!

Looking back I have had a lot of warning signs. I also lost 20kg around 3 years ago and am now around 15kg under that previous weight. I’ve had several times when I’ve been working away and have been too unwell to return home. But in that time I have also had extended patches where I could ride 10 hours a week and got my fitness to an all time best (4.5W/kg FTP for example). It has been a very up and down journey of exhaustion and being frequently really quite unwell!

@fizik that is all really helpful, thank you!

I have found that it is when there is some sort of bug lingering around schools etc that I get really hit with the extreme “body shutdown”, D+V, etc.

As above, I also lost 20kg several years ago but was managing to function in patches in that time. It is my most recent crash at speed directly to my face which seems to have sent things really over the edge. It was a sports consultant who ordered the cortisol tests as part of a pituitary gland investigation linked directly to the head injury. But as in my other post I’ve hit a wall where it seems only an endocrinologist can take things further.

In hindsight, the really horrible crash to my face could actually be one of the best things to have happened (if I ignore the whole not being able to work or function at all for 7 months 🙂 ).

Thanks everyone, I really appreciate you sharing experiences and the extra tips!

Don’t have any personal experience but Mrs R was diagnosed with secondary adrenal insufficiency in 2010. Just spoke to her about this thread and the first thing she said was get hold of a copy of “Living with Addison’s disease” by Professor Simon Pearce and Sarah Spain, available from your favourite online bookstore.

She was diagnosed originally by her gastro professor who referred her to endocrine, where the consultant said he’d eat his hat if she had Addison’s disease (what would a gastroenterologist know about it?) but sent her for a day curve test anyway (the power of being referred by a professor), followed by panicking phone calls from the hospital to come in at once to put her on hydrocortisone. Day curve tests seem to have been superseded by simpler blood tests now. The hydrocortisone solves the immediate problem but taking the right quantity is not always trivial – read up about sick day rules on the Addison’s site if you want to kn ow what I mean, and hope that we don’t have another pandemic any time soon; as someone said above we need a continuous monitor for cortisol like the diabetes things

Her other advice is to challenge everything you’re told by the medical establishment- she was nearly taken off the supposedly life critical hydrocortisone because of a mistaken assumption by a doctor, her GP practice knows very little and she has to train them, I’ve had to be trained by the practice to give injections using the emergency kit we have to have; it makes her a priority for flu jabs but the searches the GP practice do don’t recognise the condition so she has to fight for it even though her medical record at the surgery has red flags all over it. We’re had some medical people panic about it – she was once rushed to A&E in an ambulance because of a series of apparently unstoppable escalations after using the surgery’s Ask First app to ask about pleurisy symptoms.

Reading that back it sounds a bit alarming but in practice if she takes the medicine appropriately all is ok and we’ve never had a crisis and it seems likely she’s had the condition undiagnosed for most of her life.

edit: apparently they’re trialing a monitor but it’s currently the size of a suitcase. Oh, and carry a steroid dependency card.

Thanks @Rio That is all really helpful information.

One of the things I had not appreciated before your post and the ones above, was how rare adrenal insufficiency is. With that context it does help make it easier to understand the perspective of the clinicians I’ve come in to contact with.

I do like the ironic humour of a gastro professor eating his hat too 😀

I think continuous cortisol monitoring does exist, but it is a short term testing device that isn’t much fun to live with (tube under skin and bulky monitor strapped to body) rather than the glucose monitoring type things (I may have misunderstood some of that from the pituitary affected ladies my wife works with).

I will give the book a look too, thanks!

In case you haven’t found it yet there is a facebook group for Athletes with Addisons here.

Thanks @Jordan that gives some reassurance that things can be somewhat normal, but as others have already pointed out, a lot of trial and error potentially ahead.

First step is to know a bit more about exactly what is going on and go from there

I was thinking today about the key things which have led me to potentially getting my long term issues potentially understood and I think they are good tips for anyone trying to solve mystery health issues:

1) Having the NHS app

Actually seeing what has been investigated, GP notes and dates of visits made a huge difference from “I think I’ve been to the GP 2 or 3 times saying the same thing” to “sh1t I’ve been saying the same thing for 4 years and nothing has been done- time for action”.

2) The power of personal connections

Not so much who I know, but the influence of people who know other people. A podiatrist helping me with nerve issues put me on to a particularly good physio put me on to a sports consultant who knew a neuro OT who recommended cortisol testing among other blood tests

3) Chance

The big one was having a massive MTB crash which kick started a lot of investigations after my long term symptoms got suddenly worse. I’d prefer not to have had 7 months of severe concussion symptoms but it has forced a big health overall and MOT

4) Knowledgeable clinicians who are prepared to dig a bit deeper

Finding the right person on the concussion side has been huge (sports consultant for his signposting to local services and concussion physio in particular).

If not for a neuro-OT who has previously worked in a military head injury clinic, I would have never had the endocrine side investigated. I have been saying the same things to a load of different people for years but this wonderful person in particular had the previous experience and knowledge to ask more questions and dig a little deeper

5) Linked to the first point, but one of the main things has been persistence and taking a lot more ownership of health. It has felt like a second job at times but hopefully the hard work will pay off in the future

All good fun and continuous learning and I’m sure that is set to continue!

I’ve had a reply from NHS Endocrinology that the next step is the ACTH stimulation test which is as expected.

The wait however is 3-5 months! I think they want to do it at 9am again and only have clinics twice a week so you can see how that makes a big queue as that’s 2 tests a week.

Does anyone remember how or where they had their ACTH stimulation test done?

I’ve looked privately and no-where I’ve found does it. Reading between the lines it has to be done in hospital in case of adverse reaction… but I would have thought private should be an option.

The consultant I booked to see privately has also just cancelled and will be off work for several weeks so I’m struggling to find anyone to help sooner than a few months.

Any ideas or experience from the similar journey in the early days of low cortisol much appreciated 🙂