I feel I'm at the end of the roads here now. I have done all I can. These are my Cortisol Results over the last year:
May 2015 649
Feb 2015 652
Aug 2014 648
Range (175 – 600)
My GP spoke to the endo who said there was a screening test they could do at the surgery and for me to phone him but when I spoke to GP he told me the endo didn't think there was a need for the screening test because of the levels of my Cortisol eg he didn't seem to think they were problematic.
The test would have involved taking a steroid and having blood tested early in the morning. When I asked about side effects of steroid GP said I may stay awake all night and as he didn't think the test was necessary, I declined.
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Adrenal output is only recognised as a problem by doctors when it reaches either end of the spectrum resulting in Addisons (low cortisol) or Cushings (high cortisol).
A person could experience an extremely high or low or even boarder line cortisol level and the medical profession would fail to recognise it. Treatment for recognised adrenal problems are steroids.
If your cortisol levels are too high, your body can not rest or maintain this level for ever. Your levels will change to highs and lows, and then eventually all lows as cortisol is depleted.
Specialist supplements and adaptogens can help with adrenal problems but can be powerful and best used under professional guidence.
A good read is "Adrenal Fatigue. The 21st century stress syndrome by Dr Wilson.
Below is a link explaining adrenal disfunctions and the repercussions.
If you read about adrenal disfunction you will realise it is better not to wait to treat them. Restoring adrenal health can take a long time and you will probably never get that help from the National Health unless you got Addisons or Cushings, both of which are quite rare, and you really don't want to have to medicate on steroids for the rest of your life.
Are you on the pill? Some contraceptive pills can make your total cortisol levels seem higher than they really are, even though the bioavailable (free cortisol) you have will be "normal".
Absolutely not Juliet! I was on it decades ago and it sent my blood pressure through the roof. I am on anti-depressants but my blood pressure now isn't high. It's normal
You could well be on the way to developing Cushings and unlike some have said, will continue to rise or rise and fall in cycles. Some Cushing is not consistant and it takes many tests to find it at times. This would be due to a Pituitary Tumor or Tumor in the lung or on Adrenal Glands. You will have to insist on imaging tests or an itial 24 hour Urine collection test, as these levels are too high. You will have to not give up and see more doctors. I have watched my friend go thru this in the States.
I have heard and known someone who had the benign tumour of the pituitary test. All the GP offered was a steroid test which he said would keep me awake all night and that the endo didn't think it was worth pursuing at these levels. He didn't say anything about a urine test but that would make sense - I could do that at home and they could check for different levels throughout the day. I am due to have a health check so could ask for it then
The urine test only checks the total amount of cortisol in 1 24 hour period, 1x. You have to fill up a jug and take it to the lab. The doctor needs to be concerned about Cushings tho, or they won't order it. We have all been thru Hell. The doctors, everywhere, don't listen and don't know their jobs, when it comes to thyroid, cortisol..hgormones in general..they just don't get it.
In the US, when i had my test, i had to go to the lab, get the kit and return it when done. There must be some kind of trasport. for people unable to get to and from the lab. You will have to check. I'm sorry that you feel so bad.
The 24 hour test tells you nothing. Even with having full blown Cushing’s Disease (pituitary Adema) my results were negative. Per the IPSS testing I was making 4635 times what I should have been making. I did mention in my long post that my blood work for cortisol levels were normal, even as I went in to have neurosurgery to take out the tumor! I also want to clarify that Cushing’s Disease in an Adema in the pituitary. Cushing’s syndrome is over production of cortisol but not having a tumor anywhere. Cushing’s disease is more rare. I encourage you to have the dexamethasone suppression test and the salivary cortisol test. These were the only test that showed definitively I had Cushing’s disease. I understand being worried about the steroid, I am bipolar I And taking any form of a steroid makes me borderline hypo manic, But taking the dexamethasone for one day to kept me up at night but was out of my body within les than 24 hours.On the first round you would only take one dexamethasone test.
Hi Hanne, that's the one test I've not taken yet but I think I will take it as I have the tablets and just have to book a blood test. My GP said she didn't think it was worth it though because last two blood Cortisol tests as posted below one of your comments were within range, in fact they were nearer the adrenal insufficiency range if anything. I've not taken the urinary 24 Cortisol test (I thought I had but I think they were measuring something else, maybe adrenal tumour? I have the names of the things they tested but they were long and I can't remember them so would have to find the printout!) Also, I mentioned in another post about the private Cortisol saliva x 4 which didn't show anything significant. I think the second reading of the day was highest but my experiences is the first of the day and the third of the day I am at my most fatigued (this didn't reflect in the readings) and I am most alert at night, and again this didn't show in the readings).
I would ask your GP if you can do the 24 hour urinary free cortisol test. You don't take any tablets just collect all urine from a 24 hour period into a container and they analyse it. It only measures the free cortisol so it's more accurate. Mine was over 600 when blood tested but below ref range on the 24 hour urine test.
I had very similar results to you, in that NHS test my result was over range, but they said it didn't matter.
Then I got the 24hr saliva test, and it was all over the shop. My morning cortisol was twice the upper range, but low or below range all the rest of the day.
I did this with a private doctor from Louise Warvill's list, who then set me up with adrenal support including Nutri Adrenal. I'm now 3 months in and am getting huge improvements.
Thanks Silver Avocado. Others have suggested a free urine test so may go for that first. I have a feeling that my Cortisol will be higher at night because I am most alert then but don't know for sure.
Cortisol levels are the highest between 11 to 1am. The salivary collection and dexamethasone suppression test showed I definitively had full Blown Cushing’s disease. The 24 hour urine and quarters of blood tests will show incorrect information. I had the 24 hour and normal blood tests done for close to 20 years and I never had one show up that my cortisol levels were high.
Yes, I did private Cortisol x 4 salivary tests and they showed my Cortisol was highest just after lunch but it was higher in the morning than last thing at night which isn't what I experience. I expected the third one to be low too as I need a late afternoon/early morning sleep but it didn't show that. My last 4 blood Cortisols across several years have been on a downward trend, so from the first two being borderline high, the next two were within range but quite low. So not sure what to think. I have had various tests (not 24 urinary Cortisol, I thought I had but they were looking for something else, maybe to do with adrenal tumours?) Anyway they came back normal. I've not yet taken the Dex Suppression Test which is the last one to take but in view of my lowish Cortisol (but not low enough for adrenal insufficiency) my GP doesn't think it's worth me taking it now, although I have the meds and everything.
To me, for whatever it’s with, something is off with how you described the salivary cortisol collections. At the most usually two were done. I’ve never heard of anyone having a four day test. After you do the salivary test when your cortisol levels are the highest between 11 PM and 1 AM, eight hours later you have to be at the Lab and have blood taken. Did you have for blood drawn for Salivary tests over four days? Maybe I’m misinterpreting what you have said, I just wanted to clarify if I was hearing it correctly. If you still feel something is off, with the medications you’re taking meaning they are not helping you, I encourage you to press the endocrinologist to run different tests and not the standard ones. Depending on where your coritsol levels are for the salivary collection and the dexamethasone suppression test your doctor may send you A specialist for a procedure called and IPSS. There were many times in the last 15 years that I was given the standard tests and a few times when I did the Dexamethasone tests I was within a normal range. I noticed that several people on here talked about the timing of tests. With all the glands functioning and malfunctioning it’s a matter of good timing in many cases To truly find where the problem is in the endocrine system.Don’t back down and Keep standing up for yourself and getting the testing done you need to, so you can understand and begin treating Your conditions in a proactive way. I apologize for any grammatical errors on here
Hi Hanne, sorry, I didn't explain myself but the Cortisol Salivary Test x 4 was a private one and you do 4 salivary samples (there are X 6 ones as well) but the x 4 is 1) first thing in morning, 2) lunchtime, 3) 4 pm and 4) when you go to bed. There are two Dex Suppression tests but the first one (I think it's called low dose) you just take the tablets the night before and then go for blood test the following day at 9 am to see if you've suppressed or not. Depending on the results, you would then go for the high dose one I think where you need to be in hospital as I understand it. I don't have an endocrinologist, I was referred for something else, but he sent detailed response via my GP about tests they should run and all of those have been run apart from Dex Suppression test, but some were more to do with my adrenals. I had had the private Cortisol salivary x 4 test before the endocrinologist recommended tests. Hope that's clearer
I have had Cushing’s Disease for almost 20 years now the average time to receive a diagnosis is 10 years according to my neurosurgeon. I went through five endocrinologists before I found one that gave me the answers I Needed. Primary care physicians know a little bit about endocrinology but not as much about court is all/Cushing’s issues. For over 15 years I took the blood test how you have enjoyed the 24 hour urine. I asked for more tests and I was told no because my insurance probably wouldn’t cover it. When I first went to the endocrinologist that eventually diagnosed me with the Cushing’s disease he specifically told me that the 24 hour urine and blood test for cortisol are not enough. One of the first test is the dexamethasone suppression test, which was what you were speaking about. This test gives you more solid information about Cortisol levels. You test for two nights you take the steroid between 11 and 1 AM and in the morning you go to have blood drawn at 8 o’clock (fasting). Then the following night you do the same thing. The reason why this is more accurate it takes into account that your court is all levels are higher in the evening. And the dexamethasone should suppress those levels. That’s the first place to start. It was after I have this test that my Endoncrinologist I knew that it was likely a pituitary disorder. If these levels are high, you will go on to take another cortisol test (midnight cortisol salivary test. This test is really weird, For two nights in a row you take a cotton swab at in at midnight, you put it in your mouth and saturated with your saliva. You put it in the test tube and put it in the freezer. The following day you Repeat the same thing. And turn on the samples and go to blood drawn. There other tests after these as well, but they are Invasive. Your GPA is correct about the dexamethasone keeping you awake, but it’s only for one night to start depending on those results it could be given as a 2 day test. After 12 hours (I think) the steroid wears off. It sounds they are making it more dramatic than it should be. I believe you need to have a discussion with your endocrinologist One on one. I have access as a graduate assistant to any journal published in the world for free. I would be happy to email you some articles. The best advice I can give you, For whatever it’s worth, keep Fighting! If your intro chronologist will not allow you to have these tests done go somewhere else. Because Cushing’s disease and Cushing’s syndrome are so rare there are many endocrinologists that don’t test for it as frequently as thyroid disorders. I fought for over 15 years to get answers. I was in the same situation as you not until changing endocrinologists I had a final answer. I went through five endocrinologists, 2 OB/GYNs and eight general practitioners. I got many different answers and only found out in 2015 that my PCOS and hyper thyroidism are a result of overproducing cortisol. So keep fighting never doubt that you know something is wrong with your body more than anyone else, including doctors. I learned to make enough noise to be heard. I wish you much luck, to find answers soon. Personally, the hardest part for me was most of the doctors wrote me off, same things like all your tests are normal there’s nothing wrong. And it makes one feel like they’re going insane!
Thanks Hanne. I replied to your previous comment before reading this. The Dex Suppression Test is for only one night, i.e. the night before to be taken at 11 am and then to be at the surgery for blood at 9 am. Its I said in post above, my last two blood Cortisols have been on the lower side having been in the 600s in the previous two years:
May 2016 - 398
Feb 2017 - 322
Range (175 – 600)
although they did say below 300 means adrenal insufficiency
GPs always say Cushings is rare but it's because they don't look for it and I wonder how many people are walking around undiagnosed! Also, there's cyclical Cushings too!
Anyway, I'm glad that you got her in the end, Hanne
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