Cortisol test: I am having a cortisol test in the... - PMRGCAuk

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Cortisol test

PUMC profile image
PUMC
14 Replies

I am having a cortisol test in the morning. Do I remember reading that I should not take my prednisone before the test? Thank you.

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PUMC
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14 Replies
SnazzyD profile image
SnazzyD

Yes, that’s right. I took mine as soon as they finished.

PUMC profile image
PUMC in reply toSnazzyD

That’s my plan. Thank you.

Cally55 profile image
Cally55

I was asked to take the day before's dose early and on the day to take pred with me so I could take as soon as they had finished. Unfortunately my test showed very low levels both before and after. I had a phone consultation with endocrinologist last week and he was insistent that I ask GP for a hydrocortisone pen in case I was unable to take my pred orally.I now have to take 5mg pred for 6 months and try again. When I asked him how long it might take for adrenals to wake he was gloomy, anything from 6 months to never apparently!

Pred may have saved my sight but it has also left me with cataracts, sepsis ,7 osteoporotic back fractures and now this, surely there must be better treatments.

PMRpro profile image
PMRproAmbassador in reply toCally55

No there aren't I fear. Even Actemra/tocilizumab isn't a 100% solution as there are several underlying mechanisms for the inflammation and Actemra only works for one very specific one.

While cataracts are associated with pred I think it is likely the pred only speeds up the formation - and many of us don't develop them plus they are easy to deal with. And my husband had an osteoporitic spinal fracture, never taken pred in his life.

Cally55 profile image
Cally55 in reply toPMRpro

My cataracts developed from no problem to almost total blindness in 2 months, all the medics I encountered seemed to think pred was the culprit. The only plus was that they were so bad I only had to wait 2 months for cataract surgery!

PMRpro profile image
PMRproAmbassador in reply toCally55

I'll grant the pred that I think - but every cloud has a silver lining!!!

PMRpro profile image
PMRproAmbassador

You should have taken no pred for 24 hours before the first blood sample is taken. That is only a problem if you take pred at night as I do or split the dose.

PUMC profile image
PUMC in reply toPMRpro

I usually take it at 2 am. So I’ll have a good 30 hours before the test this morning. Thank you.

Plains profile image
Plains

my Endocrinologist said you do not yes until you are after prednisone? Meaning your of it.

Plains profile image
Plains in reply toPlains

do not test.. typo

PMRpro profile image
PMRproAmbassador in reply toPlains

Well your rheumy is wrong. An experienced and knowledgeable doctor can interpret the results once the patient is down below about 5mg though they prefer 3mg. By that stage many patients are recovering adrenal function and should have at least a low level of basal cortisol, some have normal levels and you don't have to worry about them. However, if a patient has no reserve adrenal function at all, it is downright negligent to abandon them to no pred which is covering for adrenal insufficiency and wait to investigate until they collapse and are in the ICU because of an adrenal crisis - which can be life-threatening.

Plains profile image
Plains in reply toPMRpro

thank you! I remember reading something about this a while ago and questioned the doctor. I will ask my GP to do the test once I am at a lower dose.

PMRpro profile image
PMRproAmbassador in reply toPlains

Just try to get them to do a basal cortisol test in the morning as soon after 9am as possible when they are doing another blood test. That is enough to see if the adrenals are doing anything for about half of patients and doesn't need the hospital.

Plains profile image
Plains in reply toPMRpro

thank you! I will

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