High Cortisol levels - is it nothing or possible Cushings?

[PJDJ_08]

Hello there,

Hope everyone is keeping well - as can be.

Have posted this recently but maybe not in the right place or tagged it well? Sorry for double request. Just really would like some advice re Cortisol.

Recent visit to see Endo - have long history of Hashi - the Endo mentioned that he ran some bloods and was surprised to see that my Cortisol levels came back high as he was expecting them to be low.

Bloods were

Thyroid:

TSH 6.8 ( ref :0.4-4.5)

T4 8.2 (ref:7-17)

Then 5 weeks later felt ill so went back in for new bloods

TSH: 3.5 ( ref 0.4-4.5)

T4: 15.4 (7-17)

Cortisol- taken around 1.30/2pm - came back over 700 nmol/l

(the ref range is 150-600nmol/l)

He said its no biggy as its only a little over the top end of the range,but should have it tested again, Having brain fog I cant really remember the name of the test so didnt think nothing of it.

Then the letter arrived for the appts and I googled overnight dex suppression test and up comes Cushings!??? Eh? Thought he said it wasnt a big deal and that its was probably high due to me being stressed about having endo appt or bloods done.

For the record was not stressed - had a lovely 2 hr wait reading, sitting in one of those reclining chairs. I was grand!

Now I have been having problems with insomnia - waking up randomly EVERY night at the same time without fail - like clock work! Sometimes it was around 3.30am for a few nights then normal waking time for me 6.30am/7am.

Or it would be every night at 4.15am on the dot!! Every night.

This has been on and off for over a year at least!

Of course everyone blames it on my thyroid - sure my levels do fluctuate low end of TSH and high end. But this happens regardless of my thyroid levels.

Re: cushings

I have suffered with weight problems Cannot lose anything - am at least 2/3 stones heavier.

My face is bigger than before but round? Not too sure

I do bruise easily and fatigued like an OAP! Am only 35yrs old, but struggle to walk sometimes. Its not like walking thru treacle its more like cement/ quick sand.

My thighs/ calves feel like I have walked a 100 miles and have a strange achy feel - cant really describe it but its like the top half of me is able to move but bottom is weighed down.

Question no 1: is this dex test just a routine follow up to a slightly high cortisol

Or is my Endo not telling me about Cushings incase I start freaking out and " go on those annoying health chat sites where the patients seem to think they know it all" yup his words from a previous consultation.

As its a teaching hospital I never really see the same person its a mix of 3 Endos.

Endo no1 in Jan ordered a ACTH test and then Endo no 2 - after me asking for info - said numbers were fine. But didn't explain them to me.

This is what I managed to write down - sorry have no idea what the ref ranges should be thou.

ACTH levels.

T-0 -325

T +30 : 950

T+60 : 1065

Any advice would be very gratefully received.

Thanks

[humanbean]

For more information on all the testing carried out by Endos, see this link :

imperialendo.co.uk/Bible201...

(To find the link again in future, google for "Endocrine Bible" and go for the PDF version - it is updated occasionally, and searching for it always brings up the latest version. I would download a copy as well though...)

The test you've already had is likely to have been a straightforward random cortisol test.

For info on the LOW DOSE DEXAMETHASONE SUPPRESSION TEST read pages 25 - 26.

For info on the HIGH DOSE DEXAMETHASONE SUPPRESSION TEST read pages 29 - 30.

For info on the OVERNIGHT DEXAMETHASONE SUPPRESSION TEST read pages 31 - 32.

I would also suggest reading any pages with a reference to "cortisol" and "Cushing". Ignore the pages referring to Addison's Disease because that is caused by very low cortisol.

You could also search the document for info on ACTH. I don't know anything about what levels are good, bad, or indifferent.

All I know about Cushing's is that it can be caused in two different ways :

1) Cushing's Syndrome - By excess production of cortisol as a result of a tumour on one or both adrenal glands (which sit on top of the kidneys)

or

2) Cushing's Disease - By excess production of ACTH from the pituitary, caused by a tumour called a pituitary adenoma, which stimulates the adrenal glands to produce excess cortisol. In this case the adrenal glands are healthy, but they are getting the wrong signals from the pituitary.

There is also a condition called Pseudo-Cushing's syndrome which isn't caused by either of the above. See this link :

en.wikipedia.org/wiki/Cushi...

pituitary.org/symptoms/pseu...

Are you on the pill? Do you have PCOS? Based on the wikipedia link to Pseudo-Cushing's it is possible your problems are caused by issues with your sex hormones that would need to be investigated.

[PJDJ_08 in reply to humanbean]

humanbean Hi, thank you for all the info and links. The Endo Bible is really helpful - wish I came across it years ago.

No not on pill or have pcos.

Just trying to make sense of the testing, probably overreacting and its nothing.

When you have lots of diff issues and everyone blames it on your thyroid you do end up thinking its all in your head. But if there is a chance of someone pin pointing all unresolved symptoms to a disease/ give it a name then its like See! I told you it was something more.

Before my b12 jabs and vit D supplements I was almost at the point of collapsing from just walking up the stairs and if you told me I had MS i would had believed you!

Just need someone to listen to my other symptoms and figure out what the cause if it all is!

Many thanks for taking the time to reply.

Hope you have a great week end. It's actually a nice day for once!

[humanbean in reply to PJDJ_08]

I just wanted to suggest that when you get any kind of testing that you ask for a copy of the results to be printed out. You need to know the result, the units of measurement, and the reference ranges. You also want them printed rather than scribbled on a bit of paper by an annoyed doctor.

Bear in mind that you are legally entitled to copies of your own test results and medical records. Don't agree to pay ridiculous amounts for, say, a single sheet of paper. They aren't allow to profit from giving out this information, they can only charge for paper and ink. And sometime next month any charges are being dropped altogether. See this member's posts for more info - he/she is our resident expert on the Data Protection Act and patient access to GP and hospital records :

healthunlocked.com/user/djr1

[PJDJ_08 in reply to humanbean]

Thanks humanbean - its soo frustrating trying to get the info. I just get told results are fine in the normal range.

[Heloise]

Hi PJ, You know when your thyroid is low (meaning high TSH) your adrenals have to make up all the slack. Your slow metabolism causes all sorts of malfunction so the adrenals have to raise your blood pressure, increase your heartbeat and who knows what happens to the brain which needs a lot of T3. You don't mention your dose of T4 or NDT but you may not be taking enough.

youtube.com/watch?v=SDphVgA...(Not working as expected?)

[PJDJ_08 in reply to Heloise]

Hi Heloise ,

Thanks for the info/ video and replying.

When I had my bloods done, they were

TSH: 3.5 ( ref 0.4-4.5)

T4: 15.4 (7-17)

(my TSH had dropped over 5 points since last test.)

The Endo said he was expecting my cortisol to be low tbh.

Ok, heres the thing even thou I have been ill for years, I have the worlds worst brain fog and simple things like asking why are you ordering this Overnight dex test if its nothing etc things like looking up and remembering Thyroid stuff. It all goes over my head and I can't remember or retain info.

So please forgive me for asking if this sounds basic.

What do you mean by T4 and NDT?

I take levothyroxine - 75mcg on alternate days and 50mcg on the other days.

Many thanks

PJ

[Heloise in reply to PJDJ_08]

Hi PJ, I was the same way when finding out I had a thyroid problem decades ago. I know so much more now and it truly changes your life. This will explain more about basic thyroid function. health.howstuffworks.com/hu...

Your levothyroxine is a synthetic T4 hormone. When your own thyroid produced hormone it came as T4, T3, T2, T1 plus calcitonin. So, in fact, you aren't getting any of that from your pill BUT the pharmaceutical industry has decided your body will make that improvement with processing from other organs like your liver and kidneys. My argument is that sometimes it happens as it should and sometimes it doesn't. But even when it works, most people take over 100 mcgs. of Levo to bring their TSH down to 1.0.

If your body doesn't convert that T4 into T3, it's noticeable because T3 is active and T4 is not. NDT represents natural desiccated thyroid like Armour or Naturethroid and it does contain all the T's and calcitonin that YOU would. Some do much better on that.

You can also add T3 (another synthetic) to your Levo for another option.

I hope you will watch the video as it points out the lack of knowledge in conventional medicine. I also feel it is more logical to get your thyroid in order and see if your adrenals improve because that may solve everything. High cortisol interferes with your thyroid hormone. Keep learning, keep asking. There are no dumb questions.

[PJDJ_08 in reply to Heloise]

@heloise ah that does clear things up, now I just need to remember and process it all. Its like my mind is still active and thinking and functioning but the process to convey it verbally or process it is like a treacle minefield of foggy fog brain not registering. Its like the computer said No. All day every day,

I have warched the clip, but will need to re watch it and make notes to look up and also use for reference. I need to make notes and lists about everything these days!

Thanks again for advice x

[Heloise in reply to PJDJ_08]

All of his videos are great on you tube. His Nervous System is also eye opening.

Now, I didn't touch on antibodies and that gets more complicated but Hashimoto's is an autoimmune disease which means your immune cells are attacking your thyroid. Often the same is happening to the brain. Don't panic. Dr. Bergman says that you are changing cells all the time...discarding old ones and creating new ones. If you can stop the attack you will do a lot better. Trying to figure out what triggers the attack is desirable. Gluten is a big one because it is REALLY difficult to digest. Sometimes it can start with a virus like Epstein-Barre. Try to get the basics first. Can you get the doctor to look at any antibodies you may have. This is a 5 min video that can explain.

youtube.com/watch?v=Z5SaM0R...(Not working as expected?) or this

youtube.com/watch?v=3_uaUXi...(Not working as expected?)

[PJDJ_08 in reply to Heloise]

Heloise I had a tTg IgA test done and it came back normal. But have played around abit with cutting out gluten on and off but Not committed to going GF before, but I will look more in to this.

It was a total nightmare getting any of my endos to believe me about my cycling thyroid levels. Even when I managed to get my gp to test my levels every week, and they showed hypo/hyper etc the Endo was still dismissive saying well levels can change but that doesnt me you have Hashitoxicosis- I have never seen that. You are one or the other... Even on Thyroxine or off meds. My levels change.

I feel that now my thyroid meds and levels are being carefully monitored and my vit D and b12d are being covered. The remaining symptoms must be down to something else.. But what??

The problem with Thyroids is that alot of the symptoms cross over with other A.I / deficiencies so its like a vicious circle - going round amd round wondering trying to pin point the cause beyond the symptoms.

[Heloise in reply to PJDJ_08]

I think one cause is that low metabolism and leaky gut contribute to deficiencies of all kinds. Alcohol destroys B1 for instance. Actually if you want to try 600 mgs. of thiamine, Izabella Wentz (she's good and has several books that might be worth getting) and Betaine HCL with meals, she said her brain fog diminished a lot.

I really think you seem motivated even though your doctor is kind of an idiot if you don't mind my saying. Just use him for the tests you can get him to do. I think the IGG test was recommended in the Betrayal series. I have made summaries and posted them for several summits that were streamed temporarily. If you go to my profile and scroll down my posting there are some suggestions given by these experts who really understand functional medicine.

[PJDJ_08 in reply to Heloise]

Hi Heloise i've not heard of taking thiamine before, will check it out.

Haha yes I totally agree with you on my Endo. Why are they so arrogant?

Will take a look at your postings hopefully will be able to take some of it in - I seriously struggle some days.

[Hidden]

Ok, here's an answer from someone who has had Cushing's. Your result of 700 at 2.30 in the afternoon is high! Cortisol levels vary throughout the day, around 9am in the morning it should be about 500, at the time of day your blood was taken it should be around 200-300 so it is high! All the other symptoms you are describing are typical of Cushing's.

The Dexamethasone test is where you are given a tablet to take at 11pm at night & then go to have blood taken around 8-9am the next morning, what they are hoping to see if that you suppress your cortisol levels ie bring them down, they will want to see the result under 50. This is one of the tests to diagnose Cushing's.

If you are on Facebook there is a group called Cushing's Uk where you will get help & support.

There are several causes of Cushing's: long term use of steroids: a benign pituitary tumour; or a benign adrenal tumour.

You can also have ectopic Cushing's where a lesion is secreting excessive cortisol.

Or as the other poster said pseudo Cushing's .

With your levels that high & the other symptoms it is good that they are investigating further. You say that you are at a teaching hospital - which one are you under? Sadly a lot of Endo departments don't have a lot of experience of Cushing's & may try to fob you off with diagnosing PCOS or telling you that you are just fat & need to exercise & diet!

The FB group is run under the umbrella of the Pituitary foundation.

Feel free to contact me if you want to know more.

[PJDJ_08 in reply to Hidden]

Hi Hidden

Thank you for replying.

My levels were "over 700" - endos words - not seen actual results- and it was around 1.30pm/2pm.

He said he was expecting the levels to be low, as I had been complaining of feeling sluggish, even thou I felt my thyroid was swinging hyper. Also his words - that is not possible. Then I had 2 consecutive tests that showed levels were dropping! Ha! Told ya so mr smug endo.

Because he didnt actually say the words Cushings, just wanted to check and see what happens to my levels when I take the dex tabs. I honestly didnt think much of it all. Just another test that maybe if you were lucky in the follow up clinic someone might remember to discuss and tell you about it.

I had my ACTH test results given to me nearly 5/6months later! Wouldnt mind but had been in once a month since!

When I read the test was for Cushings etc I did get abit stressed - but then stressed am worring about something that he hasnt even mentioned and its not like I am looking for extra diseases but there is something off and wrong with my body.

Sorry if this doesnt make sense, I struggle to connect my brain and words and make sense.

Used to be on fb but 6 years ago when all this really peaked I withdrew from friends/ family etc and deleted it. I feel like I am not living life and everyone is getting on with theirs and I am barely able to shower/ get up or down the stairs and well meaning people were telling to make an effort, go for a walk for fresh air! Lose some weight, eat healthy etc. Well meaning but judgemental and ignorant of how depressed and ill I was and no I wasnt faking it for attention - as my sister kindly pointed out.

Its taken me a lot to come on here, I have been asking these experts for help for years and no one has listened - its all in your head/ down to your thyroid/ tske these anti depressants etc so it got to the point where I felt I couldnt ask my friends/ family/ doctors for help.

Its been a hard lonely struggle.

[Hidden]

Oh bless you, it's not easy to deal with these conditions especially when people don't really understand what you're coping with.

Have a look on the Pituitary Foundation website if you want to look for more information on Cushing's pituitary.org.uk.

I'm also happy to chat to you anytime if you want to.

[SilverAvocado]

These thyroid results so suggest you are very undermedicated. Did you get a dose increase when your TSH was 6.8? That's high enough to get diagnosed in the first place!

The goal of thyroid replacement is to get the levels of freeT4 and freeT3 decently high - usually into the top quarter of their range. This will usually push TSH down to 1 or below. It sounds like you may have been kept ill for many years with serious under medication!