Anybody had the Cushing;s suppression test and ... - Thyroid UK

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Anybody had the Cushing;s suppression test and feel great the next day?

loopyhels profile image
27 Replies

I asked this a few days ago but I didn't get much response. I had a suppression test last week. After I took the drug I had what could be classed as a trippy nights sleep!! haha But the next morning I woke up feeling on top of the world,the best I had felt in years!!

The feeling didn't last long but I just wondered what it meant. Good or bad thing really. Any ideas?

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loopyhels
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27 Replies

Hello Loopy,

I'm sorry that nobody got back to you earlier. I'm sorry too that I don't know the answer and I was hoping that someone else would have had the same experience and get back to you. I can only speculate that it makes sense for your body to have reacted in this way. It's unfortunate that the reaction was short lived, but does your doctor have a plan for the way forward for you?

Jane x

loopyhels profile image
loopyhels in reply to

Thanks Jane. I am waiting for the test results from the Endo but not been told how long I have to wait for results. I am not seeing him until the 14th of next month. My hashi's has now made me go over to hypo so he keeps upping my levo. But I always feel like death everyday. This whatever was in it was great! I didn't hurt..my head was clear..I felt like I could run a marathon..like I said it was short lived unfortunately. I just wondered if it meant I didnt have Cushings or if I did. I am a bit confused by the whole cortisol./acth business..

in reply to loopyhels

Hi Loopy,

Have you tried doing the Genova saliva test for cortisol and DHEA? It might be worth you trying it to see for yourself where your cortisol and DHEA levels are. It takes readings 4 times a day and an overall daily level. You can find it on thyroiduk.org.uk/tuk/testin... and the test you want is END02.

Be sure to mention Thyroid UK so that you can get it at the reduced rate. If you can get that done there might be more people on here who can give you a few suggestions as to what to do next. It is known that high doses of artificial cortisol materials can suppress DHEA levels. I don't know whether this is the case with naturally produced cortisol. DHEA is a very important precursor of most other hormones.

I think that might be a good place to start. Jane x

loopyhels profile image
loopyhels in reply to

I have also had a saliva test done a fortnight ago by the endo but dont yet know the results from that either..:( Would that be the same test? Thank you for your suggestion.

in reply to loopyhels

Did you have to give 4 different samples at different times of the day? That is how Genova do theirs.

When you do have the results from the endo perhaps you could post them all on here. Can you phone for them rather than wait for your next appointment.

Sorry, in my last post I should have said that DHEA is the precursor of most other adrenal hormones not just hormones!!

loopyhels profile image
loopyhels in reply to

I did a midnight and a 9am test..I am going to ring tomorrow and see if the results are all back..Thank you so much for the help :)

helvella profile image
helvellaAdministratorThyroid UK

I assume you had a dexamethasone suppression test?

en.wikipedia.org/wiki/Dexam...

nlm.nih.gov/medlineplus/enc...

Was it high or low dose?

Anyway the implication appears to be that if it had a significant effect, the ACTH was suppressed (at least partially), and so the cortisol level did not rise. Thus, rather having too much cortisol you had nearer the right amount (or less?). Oh, and that assumes your usual "feel like death" is due to excessive cortisol.

loopyhels profile image
loopyhels in reply to helvella

I feel dreadful and I keep getting this awful rushing/surging through my body. I have had it for a very long time..At one point it made me feel like my eyes were rolling back in my head..The levo is not having any effect on these symptoms. The dose I took was...mmm. It doesn't say on the letter just take the 2 tablets..typical..

helvella profile image
helvellaAdministratorThyroid UK in reply to loopyhels

Those symptoms mean nothing to me (i.e. I have never experienced anything like them).

Typical - what happened to "informed consent"? Shoving a couple of tablets at someone and saying "take them" doesn't, in my view, cut the mustard. You should have had a detailed explanation and, in my view, a printed note of exactly what they were giving you, why, possible outcomes, etc.

Afraid I don't know much about this which is why I did not originally respond.

loopyhels profile image
loopyhels in reply to helvella

All the letter said was that they wanted to "perform a special test" I had to take the Dexamethasone between 11/12pm and a blood sample would be taken around 9am the next morning..The test was to exclude an excess of cortisol. End of information.....I had no idea what to expect or if there would be any side effects.

.I have been talking to some people who have Cushings and it is interesting that a lot of them are testing positive for Hashi's too..like myself..

helvella profile image
helvellaAdministratorThyroid UK in reply to loopyhels

Not exactly surprising that it occurs to some extent.

In some with hypothyroidism, the pituitary enlarges (hyperplasia) - seemingly so as to be able to make more TSH. However the anterior pituitary which creates TSH also creates ACTH. So both can go up together.

In the context of possible Cushing's, I would be extra distrustful of TSH being used to diagnose and monitor thyroid levels.

loopyhels profile image
loopyhels in reply to helvella

Thats interesting as my Endo (who is great by the way) says my Thyroid is now failing and I am now going Hypo. He used to check my T3 and 4 but only checks my TSH now..That said.. that was before He suspected Cushings as well..

I did the dexamethasone suppression test twice and felt great the day after taking 2mg dexamethasone.

My serum cortisol is too high and my saliva cortisol really low.

I have made an appointment to see a good endo in Feb 13 because my hospital endo is a complete nincompoop plus they keep messing up the blood tests and ask me to go back at 8am all the time to re-test what they forgot to do!

I think the suppression test is done when high cortisol is suspected. I admit to being rather confused about cortisol these days though!

koala

loopyhels profile image
loopyhels in reply to

Not sure if the feeling good is a sign that I have a problem and the steroids are showing that up or if everything is normal..Think I may have to wait til I speak to the Hospital..Koala did your results take long to come through? No one told me how I would get my results..but then they never do!

The first time they forgot to test the cortisol but did weird things instead, and the second time was last Monday. The endo is going to email me with her feedback.

I said I couldn't go back there yet again, it has been ridiculous - they literally messed up my tests 5 times. So much for Germans being organised.... it was a German hospital.

But in any case I have little respect for her ability and knowledge. She hadn't heard of liothyronine (T3) for example.

As for us feeling better or worse on the dexamethasone, I'm sorry but I don't know what that could indicate. I'm confused enough with my opposing results serum vs saliva!!!

I'll let you know what she says - let us know your results too when you get them :-)

koala

loopyhels profile image
loopyhels in reply to

Will do x

tavy profile image
tavy

no idea but I wonder what is in it to make such a difference.

loopyhels profile image
loopyhels

Mmmm Got my results...Bloods came back normal but saliva raised?? Will speak to Endo next month. Hospital said it was interesting that I felt wonderful after the test..and will want to do some more tests to eliminate a couple of other things..Will let you know how I get on...

Please do.

I still haven't heard my results. but like you, I felt great on the dexamethasone.

koala x

loopyhels profile image
loopyhels in reply to

Hun I rang the Endo's secretary and she gave me the results,not sure if thats something you can do :)

loopyhels profile image
loopyhels

Yes...Drives me insane...

Hi Loopyhels, I'm interested in what came of your test. I just did this suppression test and I, too, felt amazing the next day. I woke up the easiest I've ever woke in nearly 11 years -- clear head, clear mind, energy all day, and didn't feel sleep deprived at all. I couldn't really explain the difference until I woke up this morning and was back to the crummy feelings I live with daily.

DanteNXS profile image
DanteNXS

I do. My entire body shakes internally, several times a day, especially when laying down. My head feels very light, and also shakes, especially at the very top of my head. It feels like it could pop off.

I also get very cold feet, it use to be my hands and feet, but now only the feet.

DanteNXS

DanteNXS profile image
DanteNXS

I guess this is the hazard of putting man made chemicals into our bodies. They do not belong there and our immune system is fighting like crazy to keep them out.

I need to find some really good and proven natural alternatives, but that is not an easy task.

DanteNXS profile image
DanteNXS

So in my case, where my TSH is low, FT4 is low, and FT3 is below optimal, I should take pregnenolone and fish oils?

DanteNXS profile image
DanteNXS

Check this article out

raysahelian.com/pregnenolon...

Loukiya profile image
Loukiya

Hi Loopy,

I too have just had suppression test this morning and I am wired! Carried my daughter to school, housework underway and I want this to keep up. I am hoping 3 years down the line you can tell me what this means as I want to feel like this everyday.

Thanks

Sarah

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