Cortisol 290 but hospital didn't do ACTH stimulation test

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For several years I've had a ton of unexplained symptoms and have been very poorly and getting worse, although having recently gone through and checked the side-effects of the meds I'm on, some of my symptoms could be caused by the meds!

I was seen by an endocrinologist at my local hospital in September who discharged me without doing the ACTH stimulation test, even though my morning cortisol (I got there before 9am but due to the queue my bloods weren't taken until 10.30am) was 290 and the guidelines say the ACTH test should be done if it's below 400.

My GP agreed to refer me to another hospital and said in the letter that my cortisol was 290 and asked them to do the ACTH stimultation test. I went there before Christmas at 8.30am to have some blood tests, which included cortisol and ACTH but not the ACTH stimulation test, so I'm not sure if they've made a mistake or if it's normal to check the ACTH.

I've got an appointment with a consultant on 3 January. Assuming my cortisol is still below 400, I think they'd still need to do the ACTH stimulation test regardless of what the ACTH result was, as the guidelines make no mention of the ACTH test being a substitute for the ACTH stimulation test.

I paid for a private TFT test in June, as my GP said he could only order the TSH, not the Free T4 and T3, which seem to rule out a thyroid problem:

TSH 2.33 (0.27-4.20) IU/L

T4 Total 112.5 (64.5-142.0) nmol/L

Free T4 18.31 (12-22) pmol/L

Free T3 6.13 (3.1-6.8) pmol/L

Anti-thyroidperoxidase abs 7.6 (<34) kIU/L

Anti-thyroglobulin Abs 12.5 (<115) kU/L

My local hospital did some tests again in September, including some related to the pituitary gland as the consultant thought that might be the problem rather than my adrenal gland, which came back (I don't have their reference ranges)

TSH 1.21

Free T4 19.5

Free T3 5.6

Cortisol 290

FSH 3

LH 4

Prolactin 174

Testosterone 10.9 (this was 22 in May!)

SHBG 31

U&E normal

LFT and full blood count normal

 

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  • Posted

    It appears your 2nd set of tests your t4 too high..what they didn't do was dexa suppression test which if it doesn't suppress cortisol all the way down to 2 then it's not your adrenal a. After that test my adrenals didn't suppress all the way indicating I have an adrenal prob. Took the next test has venous sampling in the hosp. Which took yrs for them to get around to and it showed both my adrenal a ovverfuntioning. Right side 1500 left side 1200

    .so they won't operate bc it's bilateral

    .so back on spirolactone and keta. Sigh. Meds aren't controlling anything so I'm looking for a surgeon to remove one. Hard to find. I cannot live this way much longer most of my body has been destroyed..recently went to lab again for acth no suppression and adrenals 3.3 indicating bad adrenals. Sigh

    .this will be a long road for you. It's hard to find a good endo. I've been through 6..had many surgeries due to endo system a mess. I have men's 1. Gd luck. Hope you find answers. Btw I'm a co secreted. High aldosterone and cortisol

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    • Posted

      I'm not sure why you say the second Free T4 is too high. Assuming the hospital uses the same range as the private lab (12-22) it's in range at 19.5.

      The dexa suppression test is apparently used to diagnose Cushing's, which I don't have the main symptoms of (moon face, weight gain/central obesity). 

      The ACTH stimulation test is what the NICE guidelines say should be done if the 9am cortisol is between 100-400

      Below 100 is critical and above 400 is normal, although the guidelines note the limitations of the cortisol test and say that the ACTH stimulation test may still be necessary depending on the symptoms, or if the patient works shifts.

      I'm rather hoping I haven't got something I'd need to take corticosteriods for, as I looked at the side-effects of those and the list is horrendous. I know what you mean about feeling like most of your body has been destroyed though, I'm only 45 but practically every part of my body isn't working properly and I suffer from widespread pain and discomfort and can't do much, whilst my 72-year old parents are doing fine and have tons more energy than me, so if corticosteroids are the only thing that will make me better I'll have to take them.

      Emis Moderator comment: I have removed the links as users can find the information on this site.

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    • Posted

      I also wanted to mention that the first endo I saw asked if I was taking any steroid medications, including a nasal spray I tried a few months prior to my appointment, which was understandable, but she also asked if I smoked cannabis, which I didn't understand the relevance of to adrenal/pituitary gland disorders.

      I last smoked it about 15 years ago, as for some unknown reason after happily using it regularly for about 8 years it suddenly started causing me severe dizziness, feeling faint, etc. which probably also made me anxious / panic (it's hard to discern what symptoms are physical and what are psychological in such circumstances but I'm certain the physical symptoms came first and were the main problem). On a couple of occasions before it got that bad I recall starting to shiver uncontrollably after a smoke, with my teeth chattering even after my friend made me lie down and threw a blanket over me. I wasn't feeling cold at all and wasn't anxious either, I found it quite funny actually (although I might not have been as relaxed if I was on my own), my body was just shivering all over.

      I wonder now if all that could have been the result of an undiagnosed endocrinological disorder, as I've never understood how I could suddenly be unable to tolerate the slighest puff after being able to smoke quite heavily and regularly for so long without any adverse effects. Imagine for example someone who's been drinking 5 pints several times a week for years suddenly finding themselves unable to tolerate a single sip of beer without having a severe adverse reaction. I can't imagine that would ever get dismissed as just anxiety!

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    • Posted

      Hahah. I say that all the time about my mom and older people getting around better then me. I used to be in great shape. Very disciplined with food my entire life. Its just not fair..im sorry you have to know pain bc the Drs are unwilling nowadays to help bc of the drug epidemic..sigh. so your thinkng you may have additions. Which requires steroids.mmmy body already produces to much naturally. I tried everything but had to go on the Drs poisons for now.mwhat kinds of meds are you currently on?
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    • Posted

      I've been taking tramadol, pregabalin and cetirizine for a long time. I still suffer a lot of pain despite the tramadol, so I've been trying to come off that and stopped it for about two weeks without noticing any side-effects or increase in pain but then I had some bad days and had to take it to be able to get to appointments or go shopping. I'm going to try again though and see if I can manage with paracetamol and ibuprofen, although I know they aren't good for me either.

      I suffer from bad itching all over which isn't too bad most of the time but occassionally flares up, along with a rash that could be fungal or eczema but it doesn't really respond to the creams I've been given and seems to just come and go as it pleases. If I stop taking the pregabalin the itching gets unbearable though, so it's hard to stop that. I might try coming off the certirizine though, as I think I just start sneezing when I stop that and that will probably settle down after a while.

      Because of my stomach I've recently been put on buscopan, mebeverine, lansoprazole and Colpermin but I've stopped all of those except the Colpermin and my stomach seems to have settled down from the acute episode that led to me being put on them and having a gastroscopy. My stomach/bowel is still quite bad though, as it has been for years, and I'm due to have a stomach ultrasound on 7 January.

       

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    • Posted

      Hmm. I'm still suspicious about your calicium. It's the high end of normal not to scare you but that is what has caused relentless bone pain for yrs! No-one believed me. I went through6 endos to have a 2nd parathyroid surgery.mi had to fly to vsli. I'm from pa. It was found all4 bad. I had two left from a prior surgery with thyroid cancer..which they also left in my thyroid bed!! The Cali Dr was a God to me. He saved my life but Drs at home are blackballing me bc if THIER mistake. So I'm not getting the care I need..my calicium was anywhere from 9.5 to 11.2 first time...2nd time 8

      .7 to 10.2. So i was told by last surgeon I still have half a pc that needs to come out. Again no-one here will touch me. Sigh. And leaving this way has destroyed my stomach and pancreas I can only eat now with enzymes..so my point is. I had stomach and digestive disorders for yrs ..bc of slightly high para...so even if it's high side of normal

      .u can still have it but most endos don't know enough to bother..i had to fight hard...tramadol did nothing for my pain but since they will no longer give me oxycodones thru no fault of mine . the gov they say new rules so i asked for suboxone which was created for pain originally then turned into a drug for withdrawl..for me it's wonderful..better then opiates for pain and no problem getting it. A few more questions for you. How is your bp. And any back pain?

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    • Posted

      That's odd yes. I just read your text on weed. Strangely I've never been able to tolerate it and NOW I know I have adrenal probs. Which I probably had for 20 yrs! Coffee. Tea. Salt and carbs sent me into fits. It's horrible!

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  • Posted

    Sorry but please also have your calcium and pth checked go parathyroid com.for good reading for that.
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    • Posted

      I tried to get my parathroid checked years ago but the hospital will only do it if the calcium is high, which mine never is. In March 2015 my corrected calcium level was 2.53 (2.2-2.6).
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  • Posted

    I reread this text. I need to look up levels for prolactin etc. I know you had some pituitary testing but they dont always call if somethings wrong. We have to catch it@
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    • Posted

      My blood pressure is pretty much ideal at around 117/70 and my resting pulse is generally around 66 (which seems low considering that I'm quite unfit and don't really exercise) but some times/days it's around 78. I quit smoking about 5 years ago and have been vaping nicotine and when I was using that I think my pulse was much higher, around 104 but it's come right down since I quit (I still sometime vape nicotine-free liquids).

      I saw the endo at UCLH yesterday and my test results from just before December showed my fasting 9am cortisol as 503, which is quite a jump from the 290 it was when tested at my local hospital.

      I pointed out that the NICE guidelines https://cks.nice.org.uk/addisons-disease#!diagnosissub:2 say that even where the cortisol is in the 400-500 "normal" range, this could be due to illness or shift work and the only way to be sure there isn't an adrenal problem is to carry out the ACTH stimulation test but the consultant said they use a more sensitive assay at UCLH which wasn't available when the guidelines were written and so they don't apply and the stimulation test wouldn't be of any use, as my cortisol wouldn't be any different and the fact that it was 503 shows that my body's able to produce cortisol in response to stress (e.g. if I was hit by a car).

      As for my testosterone, he said that this can be affected by various things and that Tramadol lowers it, which doesn't make much sense as I've been on that for years so if it lowers it, it should have been low in May as well as September. Anyway, he's told me to stop taking it for 7 days and then have a fasting Testosterone test but he's discharged me, so even if it still comes back low he's not going to see me again (unless my GP refers me back I guess)!

      So a rather disappointing consultation after I struggled up there after not being able to sleep a wink the night before, leaving me feeling exhausted and ill. I had to plan a route that avoided any need to travel down escalators as I get vertigo on them at the best of times and in the state I was in I would have probably fainted. My blood pressure was something like 140/80 when they checked it before I saw the consultant, which must have been due to the stress and exhaustion from not sleeping.

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    • Posted

      Sorry. I've been real sick..i will get back to you in a few days. Grrr. Dismissed you for what! These Drs really p*ss me off. They seem to work against us . If I didnt research constantly ..id be dead. I tell them what to run!

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