Who had an experience with Synacthen test? - Thyroid UK

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Who had an experience with Synacthen test?

Viv123 profile image
31 Replies

I started my T3-only 3,5 years ago, then started adrenal glandular 3 years ago. Developed very bad symptoms, then with a lot of struggle I weaned of Glandular, now for 1 month free of it. Now I want to rule out Addison’s disease and adrenal insufficiency. Does it make sense to make Synachthen test if I am on thyroid test? I can see in the book of Paul Robinson that testing recommended before even beginning thyroid treatment. Please, help to understand how to diagnose adrenals after weaning of glandular. I had a severe withdrawal syndrome.

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Viv123 profile image
Viv123
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31 Replies
PixieElv profile image
PixieElv

Hi Viv123I had a Synacthen test to rule out any adrenaline issue.

The test itself was no problem. Took a few hours but i had no side effects and all was well.

However, Synacthen test only test at one time during the day and it tests your adreline glands ability to produce cortisol, not if it’s producing the right amount during the day.

I am currently doing a saliva test (home kit collecting saliva samples 4x a day) to ascertain whether my cortisol levels are ok during the day. I have the suspicion mine are ok in the morning and in the evening but are way to low in the afternoon. I am hoping the Saliva test will give me clarity.

Sorry that doesn’t quite answer your question but I hope it helps in terms of the actual test

Good luck!

Viv123 profile image
Viv123 in reply to PixieElv

We’re you already on thyroid meds during test?

PixieElv profile image
PixieElv in reply to Viv123

Endo made me stop for 2 weeks beforehand, to see what my non medicated readings are. So the answer is no 😊

Viv123 profile image
Viv123 in reply to PixieElv

I am afraid without thyroid meds I will not be able to walk or move… pain will be too much… how fast could you withdraw from them? Was it t3?

PixieElv profile image
PixieElv in reply to Viv123

It was T4 Levo. I was only on 50mcg (totally under medicated by GP). So going without wasn’t great but it helped to prove my hypothyroidism. GP didn’t believe it before.

With T3 you may not need to gin without it for that long? It’s half life is much quicker than T4.

Worth checking with the Endo?!

McPammy profile image
McPammy

I had a Synacthen test to rule out Addison’s. My 9am cortisol blood test was very low under range which promted the Synacthen test. The test itself is simple and straightforward. I past the test, just. So no adrenal issues. Eventually I was trialled on T3 medication along with Levothyroxine. This was my answer. My cortisol went from a pathetic 68(155-650) to 450 shortly after starting T3 medication. T3 made a huge difference to just about every cell snd organ in my body snd still does.

Viv123 profile image
Viv123 in reply to McPammy

What if I already on T3? And it looks it effects my adrenals in a wrong way. Will this test show the correct result while I am in t3?

McPammy profile image
McPammy in reply to Viv123

It should do as they are testing your adrenals. When I got mine done they also did my thyroid bloods.

endomad profile image
endomad in reply to McPammy

Wowzers even lower than mine 95(150-550) mine shot up to 650 after stim, so my adrenals work if stimmed but not it seems on their own. I was already on 75mcg t3, my endo gave me hydrocortisone 10mg daily. I was very ill immediately after the stim, loss of vision, blurry, violently sick, dizzy, faint, palpitations, I was in bed for 7 days. I have refused to have it done again. I know when my cortisol is really low I get anxiety and a tuning fork vibration in my body, its not nice. Taking my T3 at bedtime deff helped and I try to keep stress to a minimum as I do not handle it well.

Viv123 profile image
Viv123 in reply to endomad

Your endo didn’t ask you to wean t3 before stim ? It didn’t interfere?

endomad profile image
endomad in reply to Viv123

No I took my T3 as usual at bedtime but I was extremely ill after stim, I wouldnt do it again. I have low cortisol on blood tests and 4 point saliva test. I know they work if artificially stimmed but are bone idle by themselves.

Viv123 profile image
Viv123 in reply to endomad

In my case cortisol in saliva was low, I started a renal glandular because doctors in the Netherlands ignored me. And I felt better until worse. My serum cortisol was always high ok but it was always measured while I was on glandular supplements. Now I will test all adrenal measures while I am clear. But I am worried its wrong to do it while on t3...

endomad profile image
endomad in reply to Viv123

It is not wrong to do it while on T3, if you take t3 you want to know your current situation, if you wean off t3 for say a week by then you will feel ill, your adrenals will be picking up the slack due to no t3 and the stress could put your adrenals in crisis if they are already low. I am not a fan of adrenal glandulars, dr peatfield always said support adrenals through high dose vit B's (NAX nutri adrenal extra) and adrenal cocktail of salt, cream tartar (potassium) and orange juice 3 times a day. Adrenals need lot of salt. If you stop your t3 it may give a false low reading that isnt representative of what is happening when on t3. Like thyroid stuff it is all guessing, trial and error x

Viv123 profile image
Viv123 in reply to endomad

Thank you for your opinion. It gives me a bit of confidence

endomad profile image
endomad in reply to Viv123

I have struggled with very low cortisol for years, I have a good endocrinologist but was unable to find anyone who specialised in adrenal/cortisol stuff so I had to figure it out with my endo. I manage mine with low dose hydrocortisone when i need it, yoga, healthy diet, gentle exercise as most exercise just depletes my cortisol, then i get adrenaline dumping which is really unpleasant. There are no quick fixes but mostly common sense and listening to your body. There is more knowledge and common sense in this group than i have ever found in a drs surgery x

Viv123 profile image
Viv123 in reply to endomad

What diagnosis do you have?

endomad profile image
endomad in reply to Viv123

I had my thyroid removed 2009 so I am hypothyroid, levo made me ill which i think exhausted my adrenal glands over 5 years and they never recovered. So I do not have addisons just very low cortisol and poor functioning adrenal glands.

Viv123 profile image
Viv123 in reply to endomad

So true, very helpful community 🤍

Jamima profile image
Jamima in reply to endomad

Hello endomad. Would you explain what adrenaline dumping is? I have what feels like this at 5pm and 11pm everyday.

endomad profile image
endomad in reply to Jamima

Hi there, for me it starts with internal humming, jittery, anxious, I can actually feel adrenaline pumping. I feel twitchy and breathless. Sometimes a walk or doing something settles it down. If not I take diazepam as it can escalate very fast, very unpleasant feeling. If it happens twice in a week I take 10mg hydrocortisone tablet every morning for week then see how I am. My cortisol is very low and has never recovered.I get anxiety and use to have panic attacks, it is very different to that, sounds similar but I deff know the difference.

I hope that helps. X

Jamima profile image
Jamima in reply to endomad

Yes, that’s exactly how I’d describe it. My endo told me it was low blood sugar but didn’t explain why, just said to have a sugary fizzy drink. I don’t do that because I don’t like sugary fizzy drinks but a glass of red wine helps. Is it caused by low cortisol?

endomad profile image
endomad in reply to Jamima

I also get low blood sugar/hypoglycemia if forgotten to eat and over do, similar but not as urgent as adrenaline for me. You need to get a 8am cortisol test to be sure. Send the request to you Dr in writing at the top say request to go on your medical records, i find that makes them focus! You won't know for certain until then. It's hard to explain, they sound similar but very different feelings physically. Wine 7 would imagine has same effect as diazepam calming and slightly dulling effect.

Jamima profile image
Jamima in reply to endomad

Thank you, I’ll request that. I know it’s not low blood sugar, I can actually feel something start to course through me, it also makes me swell up ie clothes are tight, face swells, calves swell, so I’m presuming that’s adrenaline and it’s like a fight/flight response. Yes, the wine does calm but also contains sugar so possibly a double whammy. It’s a horrible feeling.

Firstly you need to ask your GP to do an early morning serum cortisol to see what your cortisol levels are. If the are below 350nmol/Ls then you should be referred to an Endocrinologist for further investigations & the short synacthen test. When the test is done they should take blood for both cortisol & ACTH, which is the hormone secreted by the pituitary gland. ACT needs to go on ice straight away. This will show if the issues is with the pituitary gland rather than the adrenal glands.

Viv123 profile image
Viv123 in reply to

What if I already on T3? And it looks it effects my adrenals in a wrong way. Will this test show the correct result while I am in t3?

in reply to Viv123

I'm sorry I don't have experience with T3, just cortisol. I still think that it's worth getting an early morning serum cortisol to see what the levels are & take it from there.

Viv123 profile image
Viv123 in reply to

The thing is that my morning cortisol is ok. Aldosterone is a bit too high. In the past I had my saliva cortisol all four points low.

SandyMack63 profile image
SandyMack63

I was able to raise my am cortisol levels using the Paul Robinson circadian method. I wake at 3am and take my thyroid tablets, T3 10mg and T4 100 mg. I have gone from 72 up to 470 serum cortisol reading at 9am. It means I begin to flag by 3pm and often ready for bed by 9 pm but I accept that if it means I can get out of bed in the mornings. I have played about splitting by 10 mg T3 dose but it just causes me problems so staying with this method for now. This was a personal choice as my GP and consultant had not heard of it but can not deny the improvement. Also taking my tablets 3am means I get maximum absorption on an empty stomach. I just go back to sleep again and it is now routine for me.

Viv123 profile image
Viv123 in reply to SandyMack63

I am glad to hear you got better with Paul’s method. Did you have any adrenal tests done while on t3?

SandyMack63 profile image
SandyMack63 in reply to Viv123

No I was not on any thyroid replacement when I had the test done. Paul suggests the T3 stimulates the adrenals when using the circadian rhythm so he is saying use it to regulate it. Why don’t you contact Paul himself.? He is on Facebook and answers questions.

Viv123 profile image
Viv123 in reply to SandyMack63

I scheduled appointment with him but it's in September. I will try to write to him anyway by email. thank you

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