Adrenal insufficiency

[diana16]

Does anyone suffer with adrenal insufficiency due to long term use of Prednisolone. I have been on it for about 12 years - 5mgs daily - and have now been told that I most likely have adrenal insuffiency. What are the symptoms and how does it affect you?

[Deeb1764]

I will find you a post and chart someone posted with great insight too . Will wade thro for you 🤪

[Deeb1764]

here we go managed to sort

Cortisol symptoms

[diana16 in reply to Deeb1764]

Thank you so much that's really helpful

[Bakerannie in reply to Deeb1764]

Hi Deeb1764, thanks for the lovely chart, do you happen to have a link, as on my phone when I enlarge the chart it's quite blurry (don't have a computer at the moment). I've been on Pred for almost three years and have really "strange" symptoms at times. I'm wondering if my adrenals are having a little sleep! 😜

[Runrig01]

hi yes I have severe adrenal insufficiency, also due to steroids for 12yr, but at higher doses as I had polymyalgia and GCA. I have had a few discussions on here about it, warning others and posted the graph above which is excellent.

Initially it was severe nausea and loss of appetite, I was losing weight steadily, but put that down to the lower steroid dose. It started when I got to 7mg. My gp thought it was an ENT issue, but I’d also started being unable to cope with stress, yet normally coped well running a busy orthopaedic ward. I also had a drop of 30mmhg in my blood pressure when standing, as well as rapid pulse doing any activity. So I suspected it was my adrenals and requested to see an endocrinologist. 3 weeks before my first appointment I had a severe stroke, found to be due to an adrenal crisis, I was on 4mg at that point. My cortisol was undetectable when it should have been 450-550.

I was initially switched to hydrocortisone which caused me to gain 35lbs, and my AS & asthma got worse as it’s not as strong an anti inflammatory, so I eventually switched back after my SST blood tests. Prednisolone only acts as cortisol for 8hrs although its anti inflammatory lasts 24-36hrs. So those of us with AI need to take it 2-3 x a day. You also need to carry an emergency intramuscular steroid injection at all times, which you and family will be trained to use. Basically if you’re unable to take tablets orally due to vomiting or diarrhoea, or are seriously injured or showing signs of crisis. I have to use mine regularly as I suffer severe migraines with repeated vomiting, which can progress to a crisis. Emotional stress has also caused me to require it. Just a heated argument with anyone can bring on all the low cortisol symptoms very quickly, and continue to escalate to a crisis, if I don’t take extra tablets or inject. When I get these low symptoms I use hydrocortisone as it works in 30mins as opposed to 2hrs. I should also mention gastro resistant tablets are not recommended for AI. I had to switch to HC for testing as pred doesn’t give an accurate result. It was only when they confirmed my adrenals had atrophied by 90% and I needed steroids for life that they agreed to switch back.

Hopefully if they suspect AI they have referred you to an endocrinologist for further testing, where they will do a SST, which is short synacthen test, where they take a blood sample to check your cortisol having omitted your steroid. They then inject a synthetic form of acth, which should stimulate your adrenals to produce cortisol. Then 30 & 60 mins later they recheck your cortisol levels. There are only 2 hormones we can’t live without: insulin & cortisol. AI is rare with many endocrinologists not even seeing many, my gp was 60 and I was his first case. I had to transfer to a larger centre in London for treatment. Feel free to ask if you have any questions

[Deeb1764 in reply to Runrig01]

YAY I was hoping you would come in on this if you can help Bakerannie on where you got the chart as needs a clearer copy this would be fab too x

[Runrig01 in reply to Deeb1764]

unfortunately I don’t have a clearer copy. It was designed by a women in Australia, who has spent her life researching AI, as her husband has it. She is unfortunately no longer in the group I obtained it from though.

[Justanothermama in reply to Runrig01]

excellent summary! I’d only add that with careful guidance from an endocrinologist one might be able recover their adrenals. Mine were at a questionable threshold (endocrinologist said it could go either way) but after several years of VERY CAREFUL tapering, and honestly feeling horrible doing it, mine have recovered. Thankfully, I am finally on a biologic that works so am able to abstain from steroids almost completely and use them only as an absolute last resort. But for a long time, they were the only thing that worked for me as I failed biologic after biologic. What was most memorable was the absolute inability to tolerate any level of stress. Definitely work with the endocrinologist to see what the adrenal function is and if possible taper off steroids. Not having adrenals working is a threat to your life if you have a crisis. Best of luck.

[Runrig01 in reply to Justanothermama]

Yes many with steroid induced can recover, especially if you get a good response from the SST as that shows your adrenal cells are still capable of producing cortisol. It’s just the acth isn’t being produced in sufficient amounts due to the steroids. Unfortunately e cause my SST was undetectable cortisol first thing, then only rose to 72, I’m told the majority of my cortex is no longer capable of reducing cortisol, and I need steroids for life. It’s frustrating as pain eats into cortisol, so while I’m currently in a flare, I’m waking with the nausea, headache and lightheadedness. Takes around 2hrs for my levels to peak to the point I can function.

I’m due to go to Devon for a holiday on Friday, but my back, buttocks, hips and feet are agony. I don’t want to hold hubby back from being able to explore, but it’s not looking like it will settle anytime soon. You take care 🤗

[Justanothermama in reply to Runrig01]

I consider myself very fortunate and I’m so sorry yours cannot recover. It was not fun having half functional steroids, I hate to imagine your struggles. I try to discourage steroid use if possible, but also know, for me, I had no other choice at the time. I hope you’re able to make that trip when it comes, missing the events that matters is hard in a whole other manner. Hugs to you.

[diana16 in reply to Justanothermama]

Interesting re the stress that can be induced through low cortisol levels. All the comments have made me more determined to come off the steroids, trouble is I usually get down to 3 mgs, feel absolutely terrible so go back to 5. I am not very hopeful of seeing anyone about this at the moment!

[Justanothermama in reply to diana16]

When I got to that point I’d alternate, for example 5 mg one day, then 3 mg the next, then I’d move to 5, 3, 3. Eventually you’ll be able to get to 3. Stay there then move to 3, 3, 1.5. These are just examples, listen to your body. It took a very long time and a very slow taper to get there, as in several years. And yes, I felt awful, but I listened to my body. I learned to recognize when I was tapering too fast. Best of luck!

[diana16 in reply to Justanothermama]

Thank you so much for all the support.

[Lollybygolly in reply to Runrig01]

I recently had a terribly stressful shock and was sick with diarrhoea for nearly 24 hours afterwards. It meant my 70th birthday party had to be cancelled.. more stress. It didn’t occur to me that low cortisol levels could bring on sick migraines.

[Plumcrumble]

Hi I've been on prednisolone for 4l years, just before covid I had the test to check the adrenal glands, apparently I was border line, they wanted to check them again at a later date, but along came covid.Anyway I take 5mg daily, so I expect I couldn't do without it now, best wishes Sarah

[diana16 in reply to Plumcrumble]

Hi Plumcrumble I think my body is the same, I need advice from the medics!! If I can get an appt!!

[Plumcrumble in reply to diana16]

Yes I know what you mean I haven't been seen by rheumatology for nearly a year, my gp does the bloods, thanks for your reply 👍

[LesBev]

hi Diana. I had exactly the same and asked to be referred to an endocrinologist. He offered me an intravenous drug to try and “ kickstart ”my adrenal gland. Thank god it worked. If not, I was told I’d have to carry an emergency injection always. I hope you get help and are able to recover. No more steroids for me, even the injection into my rear caused atrophy of the area and a crater like hole in my bottom!!I don’t like steroids now 🙄 x

[diana16 in reply to LesBev]

I have always referred to them as my wonder drug as they were the only drug I could take for my RA for a long time until biologics came along. Now that the biologics do such a great change I feel it is time for me to make a concerted effort to come off the steroids. Thanks for your advice. x

[14penny]

Sorry not much info I was just told that after taking them for about 7 years i could never come off them but i am only on 2.5