Cortisol test help please: I have had my cortisol... - Thyroid UK

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Cortisol test help please

Eimear78 profile image
44 Replies

I have had my cortisol tested and the endocrinology clinic say its fine but wanted to double check as it was a 9am test and seemed low also the last 4 months of my life have been the most stressful so I thought it would be off the chart.

Its 123 with the range being 100 - 500.

Is it ok?

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Eimear78 profile image
Eimear78
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44 Replies
mischa profile image
mischa

A 9 a.m. cortisol blood test of 123 is very low. You need to show this to your GP. It needs further attention.

Eimear78 profile image
Eimear78 in reply to mischa

Does it make a difference if I was fasting?

mischa profile image
mischa in reply to Eimear78

I do not know if fasting affects cortisol output. If you were fasting for a morning cortisol blood test then I doubt if it would affect cortisol.

mischa profile image
mischa in reply to mischa

Incidentally, what symptoms do you have? With a figure like that you would have symptoms.

Eimear78 profile image
Eimear78 in reply to mischa

I didn't any specific symptoms just a hunch that my cortisol levels may be high as I have been.uncontrollably irritable and very stressy so I asked for a test while I was getting my regular thyroid bloods done at the endocrinology clinic. I was expecting them to be very high.

mischa profile image
mischa in reply to Eimear78

A figure of 123 at 9 am is not high cortisol.

mischa profile image
mischa in reply to mischa

Why don't you have a cortisol saliva test to see what your levels are throughout the day? That would give you a better picture.

Eimear78 profile image
Eimear78 in reply to mischa

How do I do that?

mischa profile image
mischa in reply to Eimear78

If you go to Thyroid UK on the internet - it is the home page you will see listed on the left-hand side a number of options. Scroll down to About Testing - open that up and you will see Private Testing. There are a couple of choices there. You can get a saliva test through Genova or Regenerous. Genova's test is listed under Adrenal Stress Profile. They are both the same price and do 4 spit samples throughout the day including a test for DHEA. I don't know of any others. I think turnaround is about a week.

A saliva test will tell you where your cortisol is at 4 points during the day and this will give you an idea of what, if any, steps you should take to support your adrenals.

I hope this helps.

humanbean profile image
humanbean

Hidden might have some advice. She is knowledgeable on the subject of cortisol levels.

Barrister profile image
Barrister

You need to ask for a SST as this cortisol result for 9am is much too low.

Clemmie

Eimear78 profile image
Eimear78

Thanks everyone. I thought it was weird. They seemed to just dismiss it. They don't seem to have time at the clinic to review everything properly and look at the full picture

in reply to Eimear78

You don't need to get saliva tests done, you already know that your cortisol level is low so you need to see an Endo with knowledge who will do further testing & soon.

McPammy profile image
McPammy

Hi. I’ve had multiple low cortisol blood results the past 6 months. As low as 68. But not caught at 9am these have been varying times when I’ve collapsed and taken to hospital. Your 9am seems too low. Ask for SST but this only checks your adrenals not your pituitary output. Have your thyroid tests been good? I found recently that I’m not converting to T3 and this may be linked to low cortisol. I was very stressed leading up to my first collapse. Cortisol was 68, heart rate 46, TSH 0.22 and blood pressure low. All too low. Unfortunately I still have no diagnosis 6 months on. I switched 8 weeks to NDT from Levothyroxine and I now feel fully recovered but only just. I believe it may have been a T3 conversion issue for me. The only thing I’ve done differently in 6 months is change to NDT. No Dr would prescribe T3 on NHS due to costs. They would privately and I would have to self fund st £650 a month. NDT was a better financial choice. But not good for me as I’ve been a vegetarian for over 30 years. I am so desperate as I couldn’t walk anymore through strength loss that I would try anything to help me. Today NDT seems to have worked.

Cortisol low levels are linked to thyroid issues so get all your bloods done. Check B12, D and antibodies too.

Eimear78 profile image
Eimear78 in reply to McPammy

I have only been looking at cortisol recently because of the stress I've had. My TSH went up at the last check up so he increased my Levo to 100mcg. Last week's test results were:

TSH 0.04 <0.35-5.00>

FT4 16 <9-19>

FT3 4.6 <2.6-5.7>

Antibodies 1 < <6> >

My vitamin D is low but thats my own fault for not keeping on top of supplementing. I have been outside so much I didn't think much of it

I am in possession of some Tiromel from Turkey so I am about to take that with the levo to see if it makes any difference.

I am still exhausted, so emotional and cranky. No sex life (which I miss but don't feel up to). Foggy. Forgetful. Terrible periods. Oh and I have developed acne in the last month or so. I don't know whether to just bit the bullet in the private test so I can present more evidence. I feel like they just don't look at everything together

McPammy profile image
McPammy in reply to Eimear78

Hi. When I first felt I’ll my TSH went up to 5.96 they also increased my Levo to 100mcg from 75mcg. My TSH then dropped to 0.22 too low. As I have autoimmune thyroid issues I was going under them over medicated in a short 6 week period. This greatly effected my cortisol too. Which also dropped to 68 on multiple occasions. I also got bad skin during this time. I’ve noticed when I’m under or over medicated my skin goes bad. Not spots more like lumps and painful if messed with. I have also put on over a stone in 6 months. Which I’m mad about. NDT has been my answer along with changing to a gluten free diet as this helps keep antibodies down and fluctuations etc.

My B12 was too low so I’ve had loading now. My D was repleat twice as high. My T4 was 9.9 in range but my TSH was 29!! Since starting NDT my T4 is 7.7 below range and TSH 4.86 still too high but in range. I’m focusing on increasing my NDT slightly to bring my TSH to 1.0 which is optimal they say. I’m hoping that my GP will help me persuade my Endo I need T3 on NHS as I do and cannot afford private as with all this I have now lost my contract with my employer last week.

Eimear78 profile image
Eimear78 in reply to McPammy

So is it the cortisol making your thyroid worse? Or is it bad because it's autoimmune?

McPammy profile image
McPammy in reply to Eimear78

I don’t know for sure. I think it’s a balancing situation. The many Drs I’ve seen don’t know either! All I do know is that for months I could hardly walk through severe lack of strength suddenly after weeks of getting very tired. Only since I started NDT things have improved significantly all round. My cortisol has picked up and my thyroid is nearly normal. I’m still working on bringing TSH lower to 1.0 if possible. Yesterday I walked 10,000 steps! Which is incredible after what I’ve been through.

in reply to McPammy

A cortisol level of 68 around 9am is - or should be an automatic diagnosis starting steroids straightaway, the fact that you have collapsed shows that you are not making enough. Again you need to see an Endo asap or if you end up in A&E again say that you may have adrenal insufficiency so that they test your cortisol levels. It is a life threatening condition that neds to be taken seriously by your Doctors. If you are on Facebook then join the UK Addisons info & support group for more help or look at the UK Addisons website.

Loubas profile image
Loubas in reply to

I agree fighting with doctors as far as I feel they just go next please

Bramble83 profile image
Bramble83

That cortisol result is far too low for 9am. It should be closer to 500 at that time of day.

Cortisol reduces through the day so your afternoon result will almost certainly be much lower.

You urgently need a short synacthen test (SST) done by an endocrinologist.

I have Addison’s disease and my 9am cortisol was 210 which is higher than yours. For comparison my mid afternoon was only in the 90s.

This is a good article and covers expected ranges and diagnosis

ncbi.nlm.nih.gov/books/NBK2...

An extract of which is

Serum cortisol concentrations are normally highest in the early morning hours (06:00h – 08:00h), ranging between 10 – 20 mcg/dL (275 – 555 nmol/L) than at other times of the day. Serum cortisol concentrations determined at 08:00h of less than 3 µg/dL (80 nmol/L) are strongly suggestive of adrenal insufficiency (56), while values below 10 µg/dL (275 nmol/L) make the diagnosis likely.

An SST will show whether your adrenal glands themselves are not working (Addison’s / primary adrenal insufficiency) or it is the message telling them to work that is broken (secondary adrenal insufficiency)

Definitely push to be seen again and request the SST- it is a very simple test and the results will give you a clear answer.

Eimear78 profile image
Eimear78 in reply to Bramble83

Thanks Bramble83...after reading that I email the endo's secretary and they're referring for the test. I hope I don't have to wait long

in reply to Eimear78

Make sure they do an ACTH blood test as well - this needs to go on ice straightaway.

Hi Sorry I've only just seen this as I've been on holiday!

You're cortisol is very low for a 9am cortisol it should be nearer 500 nmol/Ls at that time of day, the reference range is for the whole day. Cortisol varies throughout the day but is at it;s highest first thing in the morning. With a level that low you need to have a synacthen test to see if your adrenal glands respond to the synacthen, they should do a base level, give you an injection & see if the cortisol levels rise, they should double in an hour. If it doesn't rise then your adrenals are working okay, however if the base level cortisol is low then it could be a problem with your pituitary gland.

Sadly few Endos understand adrenal & pituitary problems so you need to find one that does. If you are on Facebook then join the UK Addisons info & support group as there are a lot of knowledgeable people on there who can help. Or have a look at the Uk Addisons website for more info. They will also point you to an Endo who is conversant in pituitary/adrenal issues.

Eimear78 profile image
Eimear78 in reply to

Thanks for replying Pauline. I am starting to realise that endos seem to only understand diabetes. I told the nurse (it was a nurse led clinic) that I had the test at 9am and she didn't pick it up.

What's an ATCH test and will they do it as standard with the SST?

in reply to Eimear78

An ACTH test is to see if ACTH is being secreted by the pituitary, sending messages to the adrenal glands to produce cortisol, so it's important to be done as well. They won't always do it as they don't understand the significance of doing it.

Eimear78 profile image
Eimear78 in reply to

Hi Pauline. I received a garbled message from the endo nurse who said my SST results were adequate...i haven't the full picture but she said the minimum level is 430 and mine was 790. I am not sure what I need to ask her to make sure I get all of the answers. She seems quite junior or unsure of what she's telling me. What would you reckon I ask?

in reply to Eimear78

Hi I would ask the secretary to send you the results of your SST including what the ACTH result was too. You need to know what the base level cortisol was & what it rose to. It sounds like you stimmed well (doubled the result to the ACTH stimulant) however if your result was 790 then that is high it should be nearer 500nmol/ls. What symptoms are you getting? Do you gain weight & then lose it - sort of in a cycle? Do you have problems sleeping & insomnia? Do you bruise easily? What's your BP like? I'm wondering if your cortisol levels are going up & down which then makes it difficult for an unexperienced Endo to give you a diagnosis. Try & get the results & et me know. x

Eimear78 profile image
Eimear78 in reply to

I have always struggled with weight gain and yo yo ing and i always have bruises on my legs but probably fron being active . I have no symptoms to speak of apart from thyroid symptoms.

I will get the results and let you know.

Both my brother and sister have cortisol problems. I need to do some digging but my brother has been told he has none/very low and my sister is a very high

in reply to Eimear78

That's interesting that other members of your family have cortisol issues - that should make them do more tests although many Endo's will say it doesn't run in families! I'm admin for a Facebook group called Cushing's UK which would help you with cortisol issues, feel free to join is you are on FB.

Eimear78 profile image
Eimear78 in reply to

Hi again Pauline.

The endo nurse never came back ro me but authorised the secretary to send me the results to decipher.

There is no ACTH result on here and the SST result says (time post dose/cortisol nmol/l:

0 mins 262

30 mins 640

60 mins 790

I have an appt next Wednesday with the endo. He swapped it as I don't want to see the nurse. They ran the same batch of tests as the October tests which had the low cortisol so it will be good to see if the test is similar again.

Is there anything I should point out in my appointment? Is that initial cortisol level right?

Thanks for your help

in reply to Eimear78

Hi if the SST was done around 9am then your base level is low, they will argue that you responded well to the synacthen which shows that your adrenal glands are working well but perhaps too well as they are very high results. It would be worth asking for a Dexamethasone blood test to see if the Dex. suppresses your cortisol levels if it does then it's unlikely that it is Cushing's, if it doesn't suppress then you could have Cushing's, maybe cyclical Cushing's where levels go up & down. Unfortunately many endo's will not acknowledge this, so if you don't get anywhere then ask for a 2nd opinion to an Endo who understands pituitary/adrenal issues.

Eimear78 profile image
Eimear78 in reply to

Thanks Pauline. It was done at about 8.15/8.30. What should I expect to see on the ACTH test?

in reply to Eimear78

The reference range for ACTH is 2.2-17.6pmol/L or 10-80ng/L depending on which measurement the lab uses. ACTH should be at it's highest first thing in the morning & then falls throughout the day. It will be higher if there is a pituitary problem (benign tumour) or lower if an adrenal issue. Hope that helps? Let me know how you get on please.

Eimear78 profile image
Eimear78 in reply to

I will do Pauline. Thank you so much for your help

Eimear78 profile image
Eimear78 in reply to Eimear78

Hi Pauline.

He's adamant that because my SST was fine that everything is ok. I could go for a second opinion but any clinician would say the same.

My ACTH level from my SST was 5 and the range was 0 to 20 (i assumed that was pmol/L so that's low for 8.30

The test i had last week which was at 10am was 277. He said because i haven't got obvious symptoms of Cushings it won't be cyclical Cushings.

Marz profile image
Marz in reply to Eimear78

You need to tag Hidden as you inadvertently replied to yourself :-) Easily done ! She will not have an Alert ...

Eimear78 profile image
Eimear78 in reply to Marz

It didn't occur to me. Thanks Marz

in reply to Eimear78

You are entitled to a 2nd opinion under the 2012 heath & social care act, however you need to get one that understands pituitary/adrenal issues. The Pituitary Foundation can help with that.

Eimear78 profile image
Eimear78 in reply to

Between this and my thyroid I am not sure how much I can take. They didn't test my t3 either so i may need another blood test this week.

Am i right to push it? Those cortisol/ATCH levels are low aren't they?

in reply to Eimear78

Yes the ACTH was on the low side, you stimmed well as your levels doubles but it cold still be a Pituitary issue. If it is a Pit problem then T3 needs to be tested.

Eimear78 profile image
Eimear78 in reply to

Thanks Pauline. I will check with the Pituitary Foundation. It's reminding me that I probably need to look for the results of blood tests i had 5 years ago. I was struggling to breastfeed as despite having really high prolactin levels i wasn't producing milk. They did a whole load of tests and I was referred to an endo at Salford Royal because they thought i had a prolactinoma but they ruled it out.

humanbean profile image
humanbean

For info on the SST test and any other tests likely to be done in a hospital by the endocrinology department, download the "endocrine bible" from this link :

imperialendo.com/for-doctor...

In my opinion the PDF version is better than the HTML version and you can download it. Note what it says on page 2 about reference ranges. The SST test info is on pages 68 - 70.

Eimear78 profile image
Eimear78

Hi everyone. Just about to have my SST and they trst ACTH as part of their protocol

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