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Question re cortisol test

Messages
75
Location
Manchester, UK
Hi All,

My GP has arranged for me to have a cortisol test, to check my adrenal function. It seems this test can ONLY be done between 8 and 9am, no other time will do. This presents a huge problem for me as I don't rise until late morning, early afternoon. And when I first wake I am incapable of functioning. Because I also suffer from insomnia, I am considering staying up all night just to make this test. Yes, I will be a wreck, but I will be more of a wreck if I fall asleep then have to get up early (in fact, it won't happen)

Is anyone able to tell me if doing this, staying up all night, will skew the text in any way? I obviously don't want this to happen but seriously, there's no way I can get up for such an early appointment. I haven't seem 8am in twenty years. This is the only GP who has ever suggested checking my adrenal glands, so I really want to make it to this appointment!

Thanks in advance.
 

charles shepherd

Senior Member
Messages
2,239
Does your GP have a copy of the MEA purple book?

Below is section 6.6.2, which includes information on the assessment of adrenal gland function

Dr Charles Shepherd
Hon Medical Adviser, MEA
Website: www.meassociation.org.uk

6.6.2 Examples of further tests that may be necessary
· Autonomic function tests (e.g. tilt-table testing) and Composite Autonomic Symptom Scale (COMPASS) if autonomic symptoms, syncope or postural hypotension are prominent.

· Chest X-ray if there is a history of chronic cough.

· Infectious disease screen if there is any possibility of chlamydia pneumonia (Chia JK and Chia LY 1999), hepatitis B/C, HIV, Lyme disease, mycoplasma, Q fever, etc.

· MRI scan of brain if multiple sclerosis is considered possible.

· Muscle biopsy if serum creatine kinase is raised or where there is progressive deterioration in muscle strength and/or muscle wasting.

· Rheumatology and autoantibody screen if any degree of arthralgia is prominent. Antinuclear antibody may be positive in people with ME/CFS. If so, consider whether this could be related to systemic lupus erythematosus, especially if the titre is high. If systemic lupus erythematosus is considered to be a possibility, test for antinuclear and anti-double stranded DNA antibodies and complement.

Anti-CCP antibodies are a more sensitive and specific test for early rheumatoid arthritis than rheumatoid factor.

Other infections that can cause an arthralgia and fatigue syndrome include Borrelia, Brucella, Campylobacter, cytomegalovirus, parvovirus, shigella and Yersinia.

· Schirmer’s test if dry eyes – possibility of Sjögren’s syndrome[SL1] . Some patients with chronic fatigue have dry eyes and mouth and other features suggestive of Sjögren’s syndrome. They should be investigated for inflammatory markers, elevated immunoglobulins and autoantibodies. If Sjögren’s syndrome is excluded, it is still important to provide symptomatic relief for these symptoms. Helpful information is available from Arthritis Research UK.

· Serum 25-hydroxy vitamin D (25-OHD). Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight. A retrospective study of serum 25-OHD levels in 221 ME/CFS patients found moderate to severe suboptimal levels with a mean level of 44.4nmol/l (Berkovitz et al 2009). Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. It can co-exist with ME/CFS. Levels < 25nmol/ml may be associated with symptoms.

NB: Low serum calcium and phosphate and an elevated alkaline phosphatase are consistent with osteomalacia.

· Serum estradiol and follicle-stimulating hormone if there is significant premenstrual exacerbation of symptoms (Studd and Panay 1996) or the possibility of an early menopause.

· Serum prolactin and neuroradiology investigations if there are symptoms that could be caused by a pituitary tumour (e.g. headaches, eye problems and symptoms suggestive of prolactin excess such as acne, galactorrhoea, hirsutism, menstrual irregularities, loss of libido) or hypopituitarism (Coucke et al 2013; Hurel et al 1995).

· Short synacthen (ACTH) test if plasma or urinary cortisol is low with symptoms (i.e. weight loss, nausea, pigmentation of non-sun exposed areas) and if routine screening tests suggest Addison’s disease (i.e. hypotension, low serum sodium, raised potassium).

The short synacthen test may fail to identify people with ACTH deficiency due to hypothalamic or pituitary disorders. The insulin tolerance test remains the gold standard for diagnosing ACTH deficiency, with the other tests in reserve and to be interpreted in the light of clinical context.

The basal 9am cortisol test is also of contributory value. Cortisol is secreted in a pulsatile manner and has a diurnal variation (a peak in the morning and a trough at night) so measuring cortisol at random gives a poor indication of adrenal function in most cases. Cortisol measured at 9am can be used as a crude indicator. A measurement of > 500nmol/l suggests normal adrenal function, and a measurement of < 165nmol/l suggests adrenal insufficiency. A measurement of < 100nmol/l at 9am is diagnostic of significant deficiency and requires urgent referral.

· Patients with polycystic ovarian syndrome may experience fatigue as part of the metabolic syndrome. The fatigue may be compounded by a raised BMI, which is a common feature.

· An unfavourable lipid profile – increased triglycerides and lowered HDL cholesterol – has been reported in ME/CFS (Tomic et al 2012).


Additional and helpful info on the cortisol blood test from (UK) lab tests online:

http://labtestsonline.org.uk/understanding/analytes/cortisol/tab/sample/
 
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Messages
1,055
I had the same problem with my cortisol test. I don't usually wake till 10am, my sleep is dire. In the end I reasoned that if I wanted the test done I'd just have to get on with it.
My husband woke me just in time for me to have a wee, get dressed and drive to the surgery. He waited in the waiting room while I shuffled into the appointment like the undead. The nurse gave up trying to make conversation very quickly and just said "I'll get on with this and let you get back to bed as quickly as possible". It took a while to draw blood because I was dehydrated which was annoying. I went back to bed for a few hours when I got home and came out of the whole thing relatively unscathed.
My practical advice would be to rest before and after a bit more than you would usually. Get someone to take you (who doesn't expect a chat). No-one cares if you turn up in pyjamas. Don't forget to drink before you leave. And I wouldn't change your normal routine or sleep hygiene routine or you won't get a result that's normal for you. Just try really hard not to stress about it.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Do whatever you can to make that early appointment. The timing is crucial, so give yourself enough time to get there and wait in line, if there is one. As my own sleep habits are similar to yours, I understand the sacrifice you'll have to make, but it will only be one day out of many and you can go home and hopefully sleep it off.

In a previous life I was a medical technologist, one of those test tube thingy wranglers, so I do try to keep up on what's good to do and not good to do before a test. I found an article here:
http://www.refinery29.com/2015/07/91047/should-i-stay-up-all-night
From there, it's even more bad news. A small, new study, soon to be published in the Journal of Clinical Endocrinology and Metabolism, suggests sleep deprivation could even affect the genes that regulate your circadian rhythm. In the experiment, 15 participants (all men, unfortunately), all got one full night of sleep and one sleep-deprived night. After staying up all night, the participants' cortisol levels and genetic markers were out of whack, indicating that a single night without snoozing can cause big-level changes.

The study done on acute sleep loss is here:
http://press.endocrine.org/doi/abs/10.1210/JC.2015-2284
Following acute sleep deprivation, fasting serum cortisol concentrations were decreased at 0730 h (2449 ± 932 vs 3178 ± 723 nmol/L; P = .039), compared with after sleep.

By staying awake all night, you could have a falsely depressed cortisol level, leading to a higher suspicion of an adrenal disorder. However, that would not likely be the end of the testing. You would likely be asked to come in again in the morning (edit) some time no later than 3 p.m., have blood drawn, be injected with ACTH, and have one or two more blood samples taken an hour or two (edit) 30 and/or 60 minutes after that. This is known as an ACTH stimulation test, and it's done to rule out Addison's disease.

I've had the ACTH test and passed. It wasn't difficult and there were no side effects.
 
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Messages
75
Location
Manchester, UK
I had the same problem with my cortisol test. I don't usually wake till 10am, my sleep is dire. In the end I reasoned that if I wanted the test done I'd just have to get on with it.
My husband woke me just in time for me to have a wee, get dressed and drive to the surgery. He waited in the waiting room while I shuffled into the appointment like the undead. The nurse gave up trying to make conversation very quickly and just said "I'll get on with this and let you get back to bed as quickly as possible". It took a while to draw blood because I was dehydrated which was annoying. I went back to bed for a few hours when I got home and came out of the whole thing relatively unscathed.
My practical advice would be to rest before and after a bit more than you would usually. Get someone to take you (who doesn't expect a chat). No-one cares if you turn up in pyjamas. Don't forget to drink before you leave. And I wouldn't change your normal routine or sleep hygiene routine or you won't get a result that's normal for you. Just try really hard not to stress about it.

Thanks, Mrs Sowester, I will definitely make the appointment. No-one to take me, but I will be able to walk there. I'm not as badly off as some, it's just the getting up early that I find utterly impossible. It's hell. I honestly just can't see me getting up if I go to bed. I generally don't drift off til 3 am anyway and I need to be up at least and hour and a half before the appointment just for my body and brain to remember I'm alive :D So it's really not worth it. And I never sleep anyway if I have anything to do the next day as the adrenalin is racing. May as well stay up and watch Netflix.....
 
Messages
75
Location
Manchester, UK
By staying awake all night, you could have a falsely depressed cortisol level, leading to a higher suspicion of an adrenal disorder. However, that would not likely be the end of the testing. You would likely be asked to come in again in the morning, have blood drawn, be injected with ACTH, and have one or two more blood samples taken an hour or two after that. This is known as an ACTH stimulation test, and it's done to rule out Addison's disease.

Thanks, I realise it's not ideal. I just don't know HOW I'll get up. I'll see how I go. When you say I would be asked to come in again in the morning, do you mean the morning after this cortisol test? So - another early rising?? Oh my god. I think I may expire....
 
Messages
1,055
Your GP may prescribe you a sleeping tablet if you explain your dilemma - I find 1/2 a Zoplicone knocks me out nice and quickly.
Zoplicone is really useful if you, like me, can never sleep the night before having to get up for something special the next day or if you have to sleep somewhere unfamiliar.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Thanks, I realise it's not ideal. I just don't know HOW I'll get up. I'll see how I go. When you say I would be asked to come in again in the morning, do you mean the morning after this cortisol test? So - another early rising?? Oh my god. I think I may expire....
I should have modified that. An early rising shouldn't be required for the ACTH stimulation test, but it would need to be completed by late afternoon while the clinic is open, so you would probably get started no later than 3 p.m. I'll go back and edit my post. This would be a separate visit from your first cortisol test (done between 8 and 9 a.m. on some other day).

Info on ACTH stimulation test:
https://medlineplus.gov/ency/article/003696.htm
How the Test is Performed
The test is done the following way:
  • Your blood is drawn.
  • You then receive a shot (injection) of ACTH, usually into the muscle in your shoulder. The ACTH may be a man-made (synthetic) form.
  • After either 30 minutes or 60 minutes, or both, depending on how much ACTH you receive, your blood is drawn again.
  • The lab checks the cortisol level in all the blood samples.
You may also have other blood tests, including ACTH, as part of the first blood test.

How to Prepare for the Test
You may need to limit activities and eat foods that are high in carbohydrates 12 to 24 hours before the test. You may be asked to fast for 6 hours before the test. Sometimes, no special preparation is needed.
 
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Messages
75
Location
Manchester, UK
Well, I made it to the appointment today. Results will be back on Friday or Monday. I'm suspecting they're going to be 'normal'. I hope it doesn't skew the results that I barely slept last night. I simply can't sleep if I have to be up early, so I'm lying in bed, exhausted but wired and knowing that even if I do fall asleep, it's pointless as I have to be up soon.

Here's hoping they don't want me to attend for another early appointment! Think it may kill me...:depressed:
 

Paralee

Senior Member
Messages
571
Location
USA
@otterjack , just a thought, if your cortisol is low ask them to run a B6 test. I found out in some people B6 can lower your cortisol and hormones.

Glad you made it.
 
Messages
75
Location
Manchester, UK
Good grief, my results were back the same day!! Was a bit confusing though as I received a text message saying all was normal but when I rang the surgery about something they told me that I needed to make an appointment with the GP about the cortisol result. So....who knows what's going on?? I have a telephone appointment on Monday.

just a thought, if your cortisol is low ask them to run a B6 test. I found out in some people B6 can lower your cortisol and hormones.

Glad you made it.

Thanks, Paralee, I will bear that in mind pending the outcome of the GP consultation :thumbsup:
 
Messages
75
Location
Manchester, UK
Should clarify that the blood test was for some other things as well as the cortisol, so I'm presuming that the other stuff was ok. Anyway, will clarify on Monday.
 
Messages
75
Location
Manchester, UK
Just rang the GP - the receptionist very kindly gave me the results over the phone. my cortisol level was 237 and it should be 250+ (according to the normal range) This doesn't seem like much of a difference to me, is it significant? I'm still going to speak to the GP on Monday of course, but just wondered if any of you helpful people may be able to give me a heads up :)
 

Paralee

Senior Member
Messages
571
Location
USA
Sounds like 250 is a low "normal" with that + in front of it. If so, 237 is low. You could call back and ask for the ranges for the cortisol (a low and a high) and you could tell better. If the 250 is the low end, then you are low in cortisol, but you need the ranges. Hope you can do that, if she was nice once, surely it'll be ok to call back again.

Even a low normal is really too low.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@otterjack, your cortisol of 237 is below normal. 250 sounds like it is the cutoff for the low end of the normal range. Your doctor will probably want to rule out Addison's disease by running an ACTH stimulation test (see post #9). It's possible that staying up all night might have lowered your cortisol level.

Other labs might have a lower cutoff of 170, but each lab sets its own normal range.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Just rang the GP - the receptionist very kindly gave me the results over the phone. my cortisol level was 237 and it should be 250+ (according to the normal range) This doesn't seem like much of a difference to me, is it significant? I'm still going to speak to the GP on Monday of course, but just wondered if any of you helpful people may be able to give me a heads up :)

You could be heading for a huge waste of time unless you actually do have Addison's disease.

I also had low blood cortisol on the NHS test . My GP referred me to an Endocrinologist. He did the short synacten test and it was still low but no low enough for Addison's.

The test was interesting to me as I feel barely alive in the morning. It takes food and coffee to wake me up - either that or I need to sleep through this bad time. The short synacten test lifted my early morning bluurrhhgg very quickly.

However the Endocrinologist was not interested in looking at this further or even interested in my result. His attitude to ME and me was dismissive and hostile all through the appointment and tested. He went in saying "I don't expect to find anything" and came out the same.

It was a huge waste of my mine. I don't to go to these appointments any longer.

My guess is that your GP is taking you through the steps to see if further testing for Addison's disease is warranted.

If you read this patients account of NHS testing you'll see that even if we are referred to an Endocrinologist we don't usually get proper testing for underlying adrenal / pituitary problems.

http://www.investinme.org/mestory0041.htm
 
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Messages
75
Location
Manchester, UK
Thanks all for your responses - they are appreciated.
My guess is that your GP is taking you through the steps to see if further testing for Addison's disease is warranted.
Yes, the GP that requested the blood tests did mention Addison's disease. I will be speaking to another GP on Monday (it's pot luck who you get unless you want to wait weeks....) and will ask about the range then. I feel I've exhausted my talking energy for one day (have rang the surgery three times!) This will tell me whether it's very low or not. I'm sorry to hear of your unhelpful endocrinologist, ukxmrv, that's a horrible thing to have to experience.

It's possible that staying up all night might have lowered your cortisol level.
In the event, I couldn't stay up all night - though I certainly got precious little sleep. Had to be up at 6 as I need time to 'come round'. Got about one hour in total as even though I was exhausted, I was totally wired.
 
Messages
1,055
I think it'll be good to rule out Addison's - better to rule it out rather than have niggling doubt.
Also (and I don't have a clue about Addison's so this maybe a stupid thing to say) but I'd rather have something recognised and treatable than ME.