Had my cortisol levels checked bit confused

[Angelgoth]

So I had bloods taken yesterday morning at 8am for something else, then this morning I received a call (on a saturday!!!!) from my Gp telling me that my bloods showed low cortisol levels. I take my daily pred at lunch time and also hadn't had my daily symbicort so no steroids atall for over 10 hours, could this be the cause?

I have had low morning cortisol levles before while on pred (but not this low), does pred cause low blood results, as I always thought while on pred cortiosl levels should be ok.

My doc is now writing to my cons to tell him about the blood results. My cortisol levels were 14 nmol/L

Has anyone else had this happen

[MikeWhite]

It all depends on your dosage of pred.I now have adrenal suppression due to long term high dose pred so am on hydrocortisone 3 times a day to replace the bodies natural cortisone

[Angelgoth in reply to MikeWhite]

Hi thank you so much for your reply. I take 10mg pred every day at lunch time. I have also just finished a slow taper dose from 40mg back down to my daily 10mg

[hilary39]

It makes sense that your cortisol is low if you are on a daily dose of prednisone and just finished a burst.

Like Mike said, you should absolutely keep monitoring your cortisol in case you've developed adrenal insufficiency which can happen with long-term prednisone use. It is a very serious condition which causes your body to stop making cortisol, a hormone essential for your organs to function. I don't mean to sound scary but I had never heard of it until I wound up in the hospital with an adrenal crisis (which can be fatal) and I REALLY wish doctors had warned me this was a possibility with long term pred use--none of my dozens of GPs pulmonologists allergists etc. ever mentioned it.

It would be great if you could keep monitoring your cortisol for the next few months to see if the level goes up. The good news is that you're already on daily pred which is one of the treatments for AI. (Ironically, right? The thing that causes it is the thing that treats it since your body needs replacement cortisol.)

I developed AI almost three years ago; I take 20 mg of hydrocortisone daily to treat it which is equivalent to 5 mg of pred. (I divide it into three doses too like Mike, that has been super helpful for keeping me even throughout the day.)

There are tons of posts on adrenal insufficiency if you search that term in the archives.

Good you caught this and are keeping an eye on it!!

[Starstream20 in reply to hilary39]

Hi, I am on 10mg of prednisolone daily and cortisol levels are low Can you monitor this yourself?

[hilary39 in reply to Starstream20]

No, you need to get blood draws at a clinic. We are lobbying for home cortisol test kits in the AI community but they don't exist yet (that I know of). I get mine checked every month or two just to keep an eye on it. I'd give you the same advice I gave AngelGoth above-

[Starstream20 in reply to hilary39]

Thanks Hilary I wasn't aware that this happens or I would have questioned it when they put me on them. I am really not happy about it

😆

[hilary39 in reply to Starstream20]

You typically only develop AI after long-term pred use but it's definitely a good thing for all people who do use prednisone to know about!

[Angelgoth in reply to hilary39]

Hi thank you for your reply was very helpful. I had the original blood test for another medical problem and they just happened to check my cortisol levels at the same time which were found to be low.

will my doc monitor them regularly now, or should I be asking for regularly blood tests I don't know much about this

[hilary39 in reply to Angelgoth]

You should definitely be proactive in pushing for regular cortisol checks. A lot of doctors know almost nothing about AI so it's good to take the initiative on your end. Are you on 10 mg of pred indefinitely? Or is there a plan for you to taper off it?

If there's a plan to taper, definitely definitely get your cortisol checked regularly and if, while you're tapering, you have any dizziness, nausea, weakness or heaviness in your limbs, or heart palpitations get to a care center immediately. Adrenal crises hit hard and suddenly and it's always better to be on the safe side.

[Angelgoth in reply to hilary39]

I'm a currently being assessed for biological treatments hopefully mepo, I have blood eosinophils just need my Spirometry results to show obstruction my cons says. but I will be staying on pred for the time being I think

[hilary39 in reply to Angelgoth]

Ghoulette shared awesome info below, I agree with all of it. Don't hesitate to reach out to us on this thread in the future if you have more questions or your cortisol stays low and you're worried you may be developing AI. As she said, the learning curve can be steep. I've learned most of what I know about AI from a different health support group I'm in + reading articles. Good luck! Take good care.

[Angelgoth in reply to hilary39]

Thank you that's very kind of you. Everyone has been so helpful and I'm very very grateful

😃

[Ghoulette]

As others have said, some people can develop Adrenal suppression/Adrenal Insufficiency due to high dose daily steroids. Basically, the message between the pituitary and adrenal glands can be interrupted and the body doesn't think it needs to produce cortisol. This is what happened to me. So we have to take daily hydrocortisone (or sometimes prednisolone) to replace what our body should naturally produce.

Cortisol level of 14 is very low, BUT it also depends on what time of day you had your blood test as cortisol levels follow a circadian curve and are at their peak level in the morning, so cortisol blood test should be done between 8am-9am. What time was your test?

[Angelgoth in reply to Ghoulette]

Hi my blood test was 8am and I take my daily pred at lunch time and symbicort at 10am

[Ghoulette in reply to Angelgoth]

I would definitely chase this up with your consultant. They may want to refer you to endocrinology. How do you feel in yourself? Your consultant may alter the time you take your prednisolone from lunchtime to morning (around 7am) as this is when your body naturally produces the most cortisol (see attached pic for info)

Cortisol diurnal curve

[Angelgoth in reply to Ghoulette]

Thank you your reply and for the picture, I feel fine in myself just a but tired and stomach pain sometimes. My doc is going to write to my cons and tell him about the low results. I was just very surprised to receive a call from my doc yesterday and for my levels to be so low.

[Ghoulette in reply to Angelgoth]

Chances are, the 10mg pred you are on is managing any potential symptoms of AI, but I would definitely check on the timing of your dose. The phone call will have been because your level is low. Definitely keep on top of following up with your consultant as it is so important to get the correct medical help. If you have developed AI, it can be a very steep learning curve.

[Angelgoth in reply to Ghoulette]

Thank you so much for helping me understand things a bit better. I will deffo follow up with my cons I have a lovely cons at the Royal Brompton and he is very good.