I have had a 9am cortisol test 148nmol/L range (133-537) the results said about different markers as in the picture. The endocrinologist I saw has said it’s fine and when I questioned the test was told I can have if I want it but she doesn’t think I need it. She said different hospitals test it differently.
I am so tired and passed the point of desperation. Am I right to have it request it or if she has said it’s fine then leave it.
All other tests are fine apart from FT4 which is 10.9 range 12-22
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ConfusedH
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Well, I would say your cortisol is most definitely not fine. Far too low. But the problem with the SST test is that doctors don't really seem to understand what they're tested for, nor the results.
What were the other tests you had that were 'fine'?
Considering your low FT4, that TSH is low. It should be much higher. So, one has to suspect a pituitary problem, which would also explain the low cortisol. Testing the ACTH will show if this is the case.
Ok thank you so much, I feel like I’m wasting the doctors time but my quality of life in non existent sometimes and just want to get to the bottom of it.
Hi ConfusedH - I also had a low result although not as low as yours, that’s really low, I can only imagine how you’re feeling. Did they also test your ACTH?
I’m waiting for it, I feel really confused as the endocrinologist said it’s fine and didn’t think I needed it but I said no i will have it. I don’t want to be a hypochondriac but also want to get to the bottom of why I feel like this
Doctors usually only recognise Primary Adrenal Insufficiency. This is because they rarely test ACTH and therefore can't diagnose Secondary or Tertiary Adrenal Insufficiency (if they exist). As a result doctors think it is really rare. I would accept that Secondary and Tertiary are more rare than Primary Adrenal Insufficiency but I think it appears to be really rare because they don't test for it.
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Your morning blood cortisol result is abysmal, and ought to be a lot higher at 9am. It's under 4% through the range.
The Endo said that different hospitals test cortisol differently and that’s why they have different ranges and my cortisol is fine
You are being fobbed off and the endo is talking nonsense.
The lab that tested the cortisol level in your blood gave a reference range to go with it. The fact that other labs do things differently or have different ranges is a red herring. Doctors have to use the range provided by the lab that did the test, they can't just pick the one they want to use.
So your result was 148 nmol/L with a reference range of 133 - 537. The range or the method of testing used in another lab has no bearing on your result, and doesn't change the interpretation of your test result. It is very low at less than 4% through the range.
but I'm not recommending the test in that link, I'm only suggesting that you look at the example results. Example 1 shows optimal results for a saliva test.
In people with a normal circadian rhythm your cortisol at 9am should be much closer to 537 (top of the range) than 133 (bottom of the range). And as you can see in the graph I posted yesterday, the blood test at 9am is supposed to capture your cortisol level at its highest point over 24 hours. After 9am the cortisol level drops and drops until about 3am when it starts to rise again. So if your circadian rhythm is normal then your cortisol level is probably under the range throughout a large part of the day and night.
Note that if you get tested later in the day (with a blood test) the reference range should change to cater for how cortisol reduces in healthy people.
If you are offered an SST I think you should grab the opportunity with both hands. Make sure that the test is done as close to 9am as you can get it. Doing it at 3pm is a complete waste of time.
There is another test you could do, but with such a poor endo to deal with it isn't guaranteed to be helpful. You could do a saliva cortisol test which is normally only done by the private sector. But it can be helpful to you personally. It can show you how your circadian rhythm compares to that of healthy people.
I should have asked this earlier... Is there a chance that your circadian rhythm is not "normal"? Do you have long-term insomnia? Do you do shift work? Are you regularly awake when most people are asleep? If any of these are true then some of the stuff I've written might not be relevant - your circadian rhythm might have just shifted to later in the day and your maximum cortisol might be "normal" but just a few hours adrift of 9am.
If I was going to do a cortisol saliva test this is the one I would choose :
You need to request both an ACTH test and a SST. Your early morning cortisol level is low and needs investigating. Your endo should know this. There are NICE guidelines for what should be done, but endo's don't all follow them. Adrenal insufficiency is considered a rare condition, and most endo's have minimal (if any) experience of it. Quite a few only consider primary adrenal insufficiency (Addison's disease) and not only forget, but sometimes deny, the existence of secondary and tertiary adrenal insufficiency. GPs are even less likely to know anything about adrenal insufficiency. Many will never have knowingly seen a case. There are around 9000 Addison's patients in the UK. Numbers for secondary and tertiary are unknown - I suspect they total more than Addison's, but they are still rare.
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