Low Cortisol and Working out when you are Low
Being someone with Adrenal Insufficiency means I have to monitor my Cortisol levels day in day out. A normal healthy person naturally produces Cortisol (the stress hormone) as and when the body needs it.
For someone with AI however, there is no immediate way to monitor cortisol levels and this has to be done purely by how you feel. It can be incredibly difficult and hard to know when you need extra medication, especially as being low in cortisol often means brain fog and difficulty to work things out.
Having said this, I’d like to share ten tips to help work out when you are low in cortisol. I wish to credit Alison Campbell Hill for these suggestions and tips. Alison is a member of the Addison’s Disease Support Group on Facebook and gave permission for this to be shared.
Although these are useful tips, any serious concerns regarding low cortisol and hypo-adrenal symptoms should be discussed with a GP or your Endocrinologist as low cortisol can lead to a life-threatening adrenal crisis.
10 Tips for recognising low cortisol Symptoms
1) When first diagnosed it is common to start on a higher dose than needed and SLOWLY (2.5 mg every two weeks or even slower) cut back to find your dose and dosing schedule that controls symptoms “most of the time”;
2) Low cortisol symptoms generally come in groupings of two or more. Learning your individual low cortisol symptoms is critical. If you are unsure, bump your HC by 2.5 to 5 mg and wait 30 minutes. If it’s better, then your symptoms are at least partly caused by low cortisol and this needs to be corrected.
3) Anyone can experience low cortisol symptoms at any time. An extra stressor (physical or emotional) like more activity than normal, a stressful event, lack of sleep, etc. can cause a need for more steroid/cortisol.
However, if this is happening frequently, you need to figure out why. Is your overall daily dose sufficient? Are you spreading your doses with more in the earlier part of the day to best give you even coverage and control the highs and lows?
4)Do you have other conditions, like thyroid, vitamin deficiencies (b12 and Vit D are big ones), etc that have not been identified or are not being well controlled? Do you need Florinef or more/less Florinef (doc should be checking renin).
Do you have an infection? Are you in a lot of pain (low cortisol can cause pain in muscles/joints and if cortisol is low often pain meds for other conditions will not be as effective).
5) Track symptoms at least before each dose of HC and anytime symptoms are significant, along with time/amount of HC doses, heart rate, blood pressure, blood glucose and temp.
When these things are in normal ranges and stable generally cortisol is good.
Where they get wonky it may be indicative of highs and lows and also other conditions that may be affecting things. This can REALLY help you and your Endo figure out your proper dosing and identify other issues that might be going on.
6) If all else fails and you are still experiencing low cortisol symptoms frequently, ask for a day curve to see if you are having a problem with absorption and/or metabolizing your steroids too fast. In which case, there are alternatives, like longer-acting steroids (Prednisone) or Solu Cortef shots and the adrenal pump.
7) Hang in there! It can take a lot of work for some of us to figure things out. We are all different. Different people do better on different steroids but HC is preferred if it works.
Different bodies need different amounts of the steroid, some people do well on 20 mg a day and some need 60mg.
Different bodies are affected differently/more severely by extra stressors, for example, some people are affected greatly by emotional stress and some aren’t. Some people are affected greatly by exercise and some aren’t.
8) Have a good endocrinologist and PCP that supports you and is working “with” you for your optimal health and quality of life. If you don’t have that, keep looking. Good ones are out there.
9) It is not unusual for it to take 1, 2 and even 3 years for someone with AI to fully stabilise and heal.
10) You can find reliable information that is supported by respected AI organisations major medical centres and qualified Endocrinologist about all of this in the files in the Addison’s Disease Support Group on Facebook. Education is CRITICAL. Be kind to yourself and keep moving forward!!
Okay, well I hope this is really helpful for those with the illness or living with people with AI, especially to newly diagnosed AI patients and those who are struggling continuously. Also, this can be an interesting read to help other’s understand what is involved in working out your symptoms.
Angela Milnes xx
About Angela Milnes
Angela Milnes is a Qualified Early Years Teacher who has specialised in Preschool and Kindergarten teaching. She has a wealth of experience teaching young children and is passionate about kids crafts and having fun as a family. Angela has also taught cooking skills and loves to share both family recipes and easy instant pot recipes here on The Inspiration Edit. Follow her on Pinterest!
Debs Wardrop says
Thank you so much for all your helpful information of which I knew little. I’m seeing an endricinologist in Dec, my GP has given me little advice. I also have Multiple Schlerocis and a Colonoscopy and plenty of stress. I believe in Making life happen and always seeing the beauty in life. I also love my gorgeous daughter Kissy, she is 32 and has MS and Diabetes.Today you gave me much needed help and confidence. Thankyou, thankyou.xxx
Oh that’s lovely to hear Debs. It is really difficult to work out our cortisol levels when we have to go by how we feel and symptoms and even harder for those with additional conditions. I’m pleased you feel more confident from reading this post and wish you well. Angela x
Thanks for this Angela. As I’ve already said to you I was diagnosed Thirsday and this is a whole new world for me. I’ve had very little support apart these are your steroids and see you in 4 months. Then you are being discharged the day after. If I feel dizzy I’m to stand up slowly. To say I’m confused is an understatement.
I’ve asked to join the Facebook group and hope I can get some support from them as I’m rather concerned that I don’t know how to recognise low cortisone.
i’m glad this was useful to you Candace. It can be so so difficult to work things out and takes months and years to get used to it and be able to better manage the condition. it is super hard but you will get there.
I have a question. You state “Being someone with Adrenal Insufficiency means I have to monitor my Cortisol levels day in day out. A normal healthy person naturally produces Cortisol (the stress hormone) as and when the body needs it.” … HOW DO YOU MOITOR THAT AND WHY IS THERE NOTHING WE CAN USE THAT IS SIMPLE AND NOT INVASIVE ?.