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)
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Raventhorpe
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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 :
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.
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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!
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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.
Do a lot of comparing prices on different sites - Amazon has Nutri Adrenal products available at prices which are eye-watering!
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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 :
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
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.” (pituitary.org.uk/informatio... <pituitary.org.uk/informatio...
Within their Pituitary Gland booklet they state:
Adrenocorticotrophic Hormone (ACTH)
“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.”
Hopefully, you can get your GP to take your concerns seriously, mentioning private testing or adrenal fatigue is like a red rag to a bull. Always use adrenal insufficiency. Please contact the Pituitary Foundation if you encounter problems.
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.
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 :
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.
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.
Hi humanbean thank you so much for your help, it has taken me quite a while to read all the links so much good info.i would definitely try the adrenal cocktail you suggested when would be the best time of day to take this ? and I will buy an adrenal support though not sure which would be best for me.i have been taking 1000mcg vit c for a few months now at breakfast but will up that and take at night as well, I also have been taking thorne's basic b complex and a B12 spray but after having recent blood test results from medichecks saying my active B 12 was high at256 ( 25.10 -165) and I should stop supplementing I'm not sure whether I should carry on taking? Have also resumed supplementing D vits as that's at bottom of range. I do get very dizzy and have balance problems as well as fatigue and some nights not sleeping well. I would like to try NDT as am only on t4 and have not been doing well on it no matter what dose, on paper my blood test results look good but I have not felt well on it for a few yrs now and that's why I had the cortisol levels checked as have read about getting your ducks in a row so really need to get the adrenal glands working properly again.i have made an appointment with gp to see if I can get blood test to check ACTH and DHEA but not holding my breath on that as I usually end up having to get done privately.thanks so much for your help.
I think you need to get your problems taken seriously by your GP, but I know from personal experience how difficult it can be. Mullionaire's info on adrenal insufficiency above is very good. Perhaps you can look up the pituitary foundation website and find something you can show to your GP about ACTH and DHEA testing. I'm not familiar with the site myself.
I think switching to NDT is something you should delay until you've had your adrenals properly checked.
One thing to be aware of is that adrenal glandulars or adrenal cortex products will distort any adrenal testing. See these two links :
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Results of blood tests help needed please
Reassurance on recent saliva cortisol results ?
New Blood Results
