Thyroid UK
84,244 members99,251 posts

Hi all have just recently received my cortisol results from medichecks,as you can see bedtime one is over range and medichecks say to retest in a month re maybe Cushing's desease. As you can imagine this has worried me. Could you knowledgeable peep's on here give me some advice about what I should do, should I see my GP or is there anything I can do myself to help lower this level at bedtime. Thanking you for any help you can give me

Waking 12.900 (6 00-21. 00)

Noon3.170 (1.50-7.60)

16.00. 2.390 (0.00-5.49)

Bedtime *3.740 (0.00-1.99)

14 Replies

There is no way that you have Cushing's Disease or Cushing's Syndrome, you'll be pleased to hear. When someone with Cushing's does a saliva test the graph of their results is almost horizontal and is right at the top of the range or way over the range for the whole day. So you would expect four results that would be close to 21 or well over 21. See this graph to show what I mean :

i.pinimg.com/originals/81/1...

.

Optimal results for cortisol from a saliva test are listed in Example 1 on this link :

• Morning at the top of the range

• Noon approximately 75% of the range

• Evening close to 50% of the range

• Nighttime at the bottom of the range

.

Sample 1 : 12.9 (6 - 21)

Sample 2 : 3.17 (1.5 - 7.6)

Sample 3 : 2.39 (0 - 5.49)

Sample 4 : 3.74 (0 - 1.99)

.

Comparing the optimal results to your results we get :

Sample 1 : Optimal = 21 --- Yours = 12.9 --- You produce 61% of the cortisol you should.

Sample 2 : Optimal = 6.1 --- Yours = 3.17 --- You produce 52% of the cortisol you should.

Sample 3 : Optimal = 2.7 --- Yours = 2.39 --- You produce 88% of the cortisol that you should.

Sample 4 : Optimal = 0 --- Yours = 3.74 --- Ref range for samples 3 and 4 is nonsense!

Totals : Optimal = 29.8 --- Yours = 22.2 --- You produce 74.5% of the total cortisol that you should.

You haven't given a DHEA result, but I imagine your DHEA must be in your boots.

.

Regarding the reference ranges for samples 3 and 4 ... They are nonsense. They both include zero in the reference range. A cortisol level of zero would only be healthy for a corpse, it's very unhealthy for someone who is still capable of movement! I would guess that the samples they are using to generate the reference ranges have not been screened to exclude sick people. I accept that cortisol is lower later in the day than it is earlier in the day, and may be very low indeed, but it shouldn't be zero. But I'll carry on regardless!

.

It is clear that, rather than having Cushing's Syndrome or Cushing's Disease (which is characterised by having masses of cortisol all day), you don't have enough cortisol other than at bedtime, when you have too much.

The pattern of results you have suggests that your adrenal glands are suffering badly. If you can improve your results earlier in the day then it is possible that the high result at bedtime will reduce by itself.

I think that you should be taking adrenal supplements. The things I'm talking about are known as "adrenal glandulars". They are made out of the adrenal glands of pigs or cows. Some people do well with products that are made out of the whole adrenal gland, some can't tolerate them and do better on adrenal cortex.

procepts.eu/products/

the-natural-choice.co.uk/do...

Do a lot of comparing prices on different sites - Amazon has Nutri Adrenal products available at prices which are eye-watering!

.

I have recently written loads of posts in answer to someone else on the subject of cortisol, and rather than repeat it all it would be helpful if you were to read them. Take a look at the posts on this thread :

healthunlocked.com/thyroidu...

You should pay attention to the links I gave, discussion of the adrenal cocktail (which you should definitely be taking), and supplements for adrenal fatigue. High doses of vitamin C are very helpful with adrenal fatigue.

Note that doctors don't "believe in" adrenal fatigue.

People with "adrenal insufficiency" have Addison's Disease - their adrenal glands can't produce cortisol at all or they produce almost none, but this is not the same as "adrenal fatigue".

You don't have adrenal insufficiency, you have what patients refer to as adrenal fatigue i.e. your adrenal glands can produce cortisol they just don't produce enough to keep you feeling well. Doctors only believe in Addison's (no cortisol), Cushing's (masses of cortisol) and healthy people (all the ones who don't have Addison's or Cushing's).

It is a misconception that people with adrenal insufficiency can only have Addison's Disease, which is caused by the failure of the adrenal glands and is easily diagnosed with a short synacthen test (SST).

The difficulty is for patients who have secondary adrenal insufficiency, which is caused by failure of the pituitary gland to produce sufficient ACTH to stimulate the adrenal glands.

Whether primary or secondary adrenal insufficiency the symptoms are the same. Sadly, many endocrinologists fail to look for secondary adrenal insufficiency, which like Addison's can be fatal if not treated.

The following information just posted for a query about the SST might be helpful:

The protocol for the synacthen test can be seen with ranges etc. here

pathology.leedsth.nhs.uk/dn... Please note the timings given for the tests are essential to follow.

The latest information from the Pituitary Foundation: “Please note: for patients with symptoms that may suggest cortisol deficiency that a ‘pass’ on a SST, may not always mean that cortisol deficiency is excluded, and that with persisting symptoms, referral to an endocrinologist is recommended, where testing may be carried out with alternatives such as the glucagon test or insulin stress test.” (https://www.pituitary.org.uk/information/symptoms,-diagnosis-and-tests/tests/ <https://www.pituitary.org.uk/information/symptoms,-diagnosis-and-tests/tests/>)

Within their Pituitary Gland booklet they state:

“ACTH controls the adrenal glands which are situated just above the kidneys, and steroid hormone production. The symptoms of lack of ACTH are due to the lack of the steroid hormones from the adrenal, in particular cortisol, and include fatigue, feeling dizzy and a loss of physical wellbeing and energy. Some patients also suffer from nausea and diarrhoea. If you have severe ACTH deficiency a single blood test may show this, but usually you would need to attend an endocrine specialist unit for tests which are more dynamic to help diagnose you accurately.”

Hi mullionaire thanks for your info, I have made appointment at GP in hope that I will get ACTH test and DHEA test as I do have symptoms of dizzy spells balance problems so would like that checked out but in meantime I will try some of the things humanbean has suggested and hope that helps me.you lot on here are so amazingly knowledgeable thank you.

Thanks for the info, Mullionaire. Very useful.

Sadly, I do wonder how many people (particularly women) would be referred to an endocrinologist with the symptoms you describe. In a large majority of cases they would probably be dismissed with phrases like "Your blood tests are all in range" and "Everyone gets tired" and "You should get more exercise". The likelihood is that the patient would be sent on their way with a prescription for anti-depressants, and the doctor would think he had done everything that was necessary to get the person out of their surgery.

If you have any tips on what people should say to their doctors, it would be helpful.

A document you might find of interest is this one :

imperialendo.co.uk/Bible201...

Hi,

Quite agree what you say about patients being dismissed and will ask whether Thyroid UK would write an article for inclusion in their magazine to try and help people. The document you have linked looks most interesting and I will take time to read it. Thank you.

Hi, I've been looking for this info myself..so thanks.

I'm due to have a SST next month. Had to beg my endo for it as my ACTH was " normal" it was 361. He said 300 was normal .

Could you tell me if this is consideted normal or on the low side. I had one done last April and its dropped nearly 100 since then . I've been ill for a long time and a saliva cortisol test showed almost a flat line along the bottom! But he said " well don't know about those private labs" !

The link in the original posting shows Adrenal insufficiency is excluded by an incremental rise in cortisol of > 200 nmol/L and a 30 min value > 600 nmol/L. Not quite sure whether the sample taken before testing was 361, if so even if it rose by 200, the result would be 561 which does not reach the necessary 600. Of course you have to take into account some labs might use different measuring methods. To ensure you have accurate figures request a copy of the results from the medical record department of the hospital. You have to remember the timings of the test are important as well. The private saliva tests are another reason why some endocrinologists will become aggravated, even though I have been given to understand some hospitals now use them. It's a minefield negotiating this when you are not well.

Thanks. I see what you mean. I did read and write down what you quoted from the link.but hadn't processed it !

I haven't had the SST yet. The 361 was from the morning blood test which just tests the cortisol level.

So really, it should be 400 to be normal...is that right.

Yes so difficult when feeling like hell 😕

The results quoted were for the SST, you need to see your blood test results with the ranges to see what is normal for the test you had. You can request a copy from the medical records department. You should be able to find out how to request them on the hospital's webpage. Good luck with it all.

Thanks..will do that x

Hi magpie 10 sorry you're feeling so ill at the moment do hope you get it sorted, would be interested to know how you get on with your SST test.

Thanks Raventhorpe. Will let you know about the test. It's on the 8th

From what I've read I think it's more likely to be a pituitary problem but endos don't seem to believe in that either 😕 x

For info on the adrenal cocktail, and when to take it this link is useful :