My NHS endo has just offered me an SST. I've read a few posts on here which indicate that unless you have Addisons, it's not a particularly useful test. Is this the case, and would anyone who's had the test please give their experience. Many thanks.
Short Synacthen Test: My NHS endo has just... - Thyroid UK
Short Synacthen Test
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Jamima
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I had this test done privately Jamima because I had dredful cortisol results from my regenerus testing so my private endo arranged it.The test itself was fine it was done over a three hour time period,I’d three lots of blood drawn and tested if I remember right.i just sat in the waiting area in between drawings so it wasn’t at all scary or stressful.
My results came back fine I saw the consultant not long after and he was happy with my adrenals,nothing further was done.
I’d get it done if he’s suggested it,not easy these days to get them to do these things so I’d say go for it,best of luck x
Jamima in reply to
Thank you Happypensionerclub. I’ve noticed a few posts where people said they felt really unwell after the test. I’m not afraid of the test but it’d be useful to know if it’s going to knock me sideways. Did you feel ok afterwards?
in reply to Jamima
I was perfectly fine Jamima and honestly I was the same I was scared to death of having it done but I’d absolutely no Ill effects.It was just another thing on my tick list that I was relieved to get out the way because we needed to know how my adrenals were.
My sleep pattern was so dredful sleep an hour wake an hour stuff and sweating buckets but as I started to optimise my vitamins and got my b12 shots into me all of these things improved dramatically and I actually went on to discover I had p.a. best of luck and glad your getting it on nhs .x
Hi Jamima,
Only recently I had a Synacthen test done via an NHS endo but not heard anything regarding results yet. Mine was over two hours or so. They took baseline pituitary bloods and others also some that went off on ice for an ACTH test, 12 blood vials in total! (That freaked me out a little as it seemed a lot?)
The actual test was fine a slight feeling of nausea when they injected the Synacthen but that was fleeting. I've had to have a second ACTH done so if they've found anything yet I've not been informed.
If your endo has suggested the Synacthen test, I'd probably get it done and it could possibly help you. But obviously it's your decision. I felt fine afterwards but I was also worried about getting it done.
I'm just in the process of being investigated for possible pituitary problems, with a below range FT4 and am undiagnosed.
My previous cortisol tests have been high in range so highly unlikely that I have Addisons although I do have hyperpigmentation over my body and have had an adrenal 'type' crisis once before; blood pressure too low to be measured, very dizzy and light headed like I needed to sleep, lower back ache and blood sugar dropped very low but it was probably due to shock (broken limb) and I recovered after I was taken to A&E.
Best wishes.
Thank you Hedgeree. I've had some problems with this endo but put my foot down recently when he steadfastly refused to accept that low/normal tsh and ft4 were not optimal and went on to tell me that I was in fact, just depressed and needed to start a high dose hrt regimen even though I'd already told him hrt makes me more ill. Anyway, I had a phone conversation with him yesterday even though I told his secretary to cancel it and he admitted that he found my case 'complicated' and then offered a 2nd opinion and this test.
I'm not worried about the test per se, not bothered with blood tests etc, but I just wondered if post test was going to be a nightmare and if so, is it worth having the test. I've had on-going low cortisol symptoms, although I'm sure I'd be more ill if I had Addisons. 4 point saliva test over a year ago showed low levels throughout the day but recent blood test showed normal levels. There's something going on between thyroid and adrenals but no-one seems able to find out what it is and in yesterday's call he said that he didn't think it was hormonal but that didn't rule out something sinister elsewhere being the cause. Great.
I will have the test but just wanted to be prepared for any unusual side effects from it. Thanks for sharing your story.
That's good that you stood up to him! At least now he has maybe decided to be honest with you when he said your case is 'complicated'.
I've been (like many on this forum) on the receiving end of being told it's all in your head and my problems are due to my existing mental health problems. It's only through getting information from this forum and the collective experience here which has enabled me to become proactive and find the confidence to try and find out why I feel as unwell as I do.
Good luck and take care.☺
Thank you Hedgeree, there's no doubt that without the advice on here, I'd have given up a long time ago, and just settled for a life that's been reduced to occasionally going out to the shops and minimal interaction with others and 2-3 entire days spent on the sofa from grinding fatigue/brain fog. It's been a helping hand, no doubt about that. Good luck with your journey to full recovery.
I know well those long periods of time spent on the sofa! It's very difficult to explain to family and friends how ill I feel and when I get really nauseous the only thing I can do is lie down till it alleviates, it's a whole body thing.
I meant to say before that the only test that I have declined as I'm really nervous about it is the TRH test (thyrotropin-releasing hormone test) It appears to be contraindicated in my situation with a family history of pituitary and heart problems though it can pinpoint if your problems are at pituitary or hypothalamus level (secondary or tertiary hypothyroidism).
Maybe I've done too much research? There are those on the forum that will have more knowledge of this test. But it seems that it doesn't tell you anymore than the TSH, FT4 and the FT3 tests that we have now, hence I've decided against it.
There are members on the forum that have had this test but I've decided against it for now at least.
Best wishes.
Yes, I've said this before here but it's worth repeating; be careful what you tell your GP about your (alleged) mental health! It can come back and bite you in the arse! It did me and resulted in my symptoms being ignored until I took charge and went to A&E and got a test. GP surgery 0, me 1! And two red faces for the GPs (the ones who ignored my symptoms).
Isabella Wentz talks lots about link between adrenals and thyroid. She has lots of info on her website.
I almost didn’t post this but decided I would but didn’t want to put you off having the test that others have said they were fine having. 4 years ago I had the test at hospital over 3 hours afterwards I came out the hospital and felt very weak and confused, Also I felt emotional too and the feeling stayed with me for days after - my endo wants to do the same test again but I’m thinking of cancelling as I’m not sure I can go through all that again plus it could come back normal like before so it’s a decision I’ve got to make. I hope if you decide to have it that all will be well for you I’m sorry my story isn’t very encouraging but I wanted to be truthful x
Thank you, I'm glad you posted, I don't really mind if I'm going to be knocked sideways, I'd just like to be prepared for it. Would you mind telling me what you're being investigated for.
Hi Jamima there testing for Addison disease I think it’s because of the fatigue. It knocked me sideways but like you say if your prepared then you can plan things up to a point. I felt so unbalanced after I don’t know how I made it home. If you have someone with you I’m sure that would be a great help Do let me know how it goes please x
Thank you Timetraveler67, yes I will post how it goes.
endos only seem to treat cushings addison or adrenal tumours or cancer. They dont trear adrenal fatigue as it jsxnot recognised as a medical condition.
If you have the SST be sure to ask that the ACTH is tested at the same time. This blood is taken before you have the injection of synacthin and should be put on ice and taken immediately to the lab. This is vital to have because if your cortisol levels are low initially but rise adequately, the ACTH will indicate if you have secondary adrenal insufficiency as opposed to Addison’s/Primary adrenal insufficiency.
The endo I was under at the time had me do it before they took me off the steroids I had been on for almost two years. I was fine thankfully and no I’ll effects from the test
Hello,
I had this test yesterday, the test process was fine, I maybe didn’t have such extensive tests as others as it lasted approximately 80 minutes. One blood draw then an injection then a further blood draw 30 minutes later. Sat in a comfy chair, Blood pressure taken pre and post and offered tea and coffee throughout by some of the nicest NHS staff I have met.
I don’t suspect Addison’s disease as my levels are not chronically low and I don’t suspect adrenal issues. I believe as my T3 is consistently at the low end of the range that this also affects the pituitary gland and lowers cortisol levels and affects glucose levels also.
Am awaiting the results and my be totally wrong although I have read a recent article by Paul Robinson on his thyroid recovery blog and he explains in plain terms the relationship between T3 and Cortisol levels. Endo has just agreed to commence T3 so keeping everything crossed that the outcome of the tests won’t impact this. Good Luck 🤞
I’ve had 3 SSTs and was diagnosed with Addisons- no ill effects from any of the tests 😊
Thank you Bramble. Would you mind explaining why you had to have 3 tests.
Of course! I didn’t believe I had Addisons- I read all the symptoms and didn’t think I was that poorly. So I asked them to repeat the test 🤣
Then I changed endocrinologist as I didn’t like my first one and the first thing he did was another SST and confirmed it definitely was Addisons.
So I had 3 in total
Many thanks. Were your thyroid results off too? What were your symptoms? I don’t think I have Addison’s as I’d imagine I’d feel much worse, but there’s definitely a cortisol issue.
I did the short synacthen.
Quite fun actually, had a lovely chat with the doctor doing it. We chatted the whole time.
Painless procedure unless you don’t like needles.
I “failed” it - peak 140 nmol/L , so my result was adrenal insufficiency which by the way isn’t available on the forum list of diagnoses
Jamima in reply to
Thanks Koala - did you feel anything during the test?
in reply to Jamima
Just a tiny needle going into my arm. I was lying on a bed the whole time, so very comfortable.
The only time I felt unwell was a while into the test and lasted about 3 minutes. It wasn’t really unwell, more a bit weird and glad I was on a bed.
Other than that I felt nothing at all. The Dr was nice and it didn’t feel like anything scary in the slightest
I’m anxious and easily worried, but I can say that I wouldn’t mind repeating the short synacthen as often as they want, really unstressful.
Jamima in reply to
Thank you. Mine was quite different, they gave me the shot and said I could go and get a coffee in the cafe and to come back in 25 mins. I didn’t feel anything in that time but felt a bit ‘hyper’ about an hour later.
in reply to Jamima
How did you walk with those things on your arm? I had tubes and stuff attached to me!
Jamima in reply to
Oh, it sounds like I had the discount version. They took 3 blood samples, gave me a shot of synacthen, told me to come back and then took another blood sample.
in reply to Jamima
I didn’t know it could be different to what I had.
My cortisol was drastically low, maybe why? What was yours?
Jamima in reply to
Well there’s a chequered history with mine. Around 2 years ago 4point saliva test showed low results and low dhea. I started self medicating with glandulars and tried to go back on hrt. I believe oestrogen can increase cortisol so my next blood test came back ‘normal’. My symptoms have continued and become worse and I eventually lost it with my endo who told me my symptoms were caused by depression. He then offered this test.
I’d arranged an appointment with a private endo for 18th April and sent all my test results, and a long description on how I feel to her for my file last week as I’m self referring, her secretary called me the flowing day to bring the appointment forward to this wed, hopefully because she’s seen the results and can help, I hope so.
in reply to Jamima
Good luck in the appointment
In mine they already knew that my cortisol was too low and had diagnosed adrenal insufficiency & prescribed hydrocortisone
Are you hoping to get hydrocortisone?
Jamima in reply to
Thank you koala, I'm not expecting anything from the private endo and hopefully I'll be surprised! I've had such poor, negligent care up until now that I daren't get my hopes up. I'll take whatever she recommends, if she recommends anything. Never have I hoped to be diagnosed with an illness before, I've always been fortunate with my health, but I want to be diagnosed, because I know there's something wrong.
in reply to Jamima
Hi Jamima
I totally understand how you feel. I have experience of being very unwell and the patriarchy .... whoops..... I mean doctors have said there was nothing wrong.
Quote: "I do not think there are any significant underlying problems. I hope that she is reassured by this" by Endocrinologist.
My cortisol was already too low by then.
Move on to a bit in the future:
Critically low cortisol, panic stations by endocrinologist, go to hospital and start hydrocortisone, have synacthen test and MRI. Emails and phone calls from him.
TOO LATE my adrenals and pituitary had been suppressed an extra few years.
Other examples of even worse patriarchy i.e. doctors dismissing very serious issues.
So I really do sympasthise with you.
in reply to
Maybe if you were a man they'd listen. My husband does receive better treatment in that he is taken seriously and not dismissed.
Jamima in reply to
Yes, that's exactly how it's been so far. What a pity it took so long and incurred further damage for you, it's truly awful, I'm sorry. My appointment today is with a female endo, it'll be interesting to see if there's a difference in approach. The NHS endo was endlessly patronising until I started fighting back, then he seemed able to listen. Theres an appalling discrepancy between treatment of the sexes - they like to dope us up on anti depressants and make us shut up. Honestly don't know how many times I've been offered them by middle aged medics. Utterly pathetic. I'll post later on how this appointment goes. Thank you.
in reply to Jamima
What are your symptoms and do you take any medications?
I’m not medically trained just interested
Jamima in reply to
Hi Koala - I’m just exhausted 24/7, I seem to have a surge of what feels like adrenaline at 5pm, 11pm and 1am. Just out from private endo who told me I’m fine, my thyroid and adrenals are healthy and that I’ve to read-start hrt and she’ll refer me to CFS clinic through my GP. I feel like crying.
in reply to Jamima
What are your thyroid, ferritin, B vitamin and cortisol levels? Are you post menopause? (You mentioned hrt)
Jamima in reply to
TSH 1.03 (0.47-6.2)Ft3 3.9 (3.1-6.8)
Ft4 12.8 (12-22)
All vits and iron were good at last test about 6 months ago. Yes, I’m post meno, no flushes etc. I passed my SST. Everything is plum normal according to this endo and my nhs endo. Absolutely perfect thyroid results she says. And it’s CFS and menopause that are causing my symptoms. She said I’d need a below range FT4 for a central hypo diagnosis.
in reply to Jamima
Thyroid antibodies?
Obviously your thyroid hormones are too low. TSH can sometimes fail to increase
Jamima in reply to
Antibodies are fine. TSH doesn’t increase in central hypo. This endo is recommended on the list I got from here, I’ll let them know what her bedside manner was like, completely unprofessional. Doesn’t normally work on a Wednesday so hadn’t read my notes properly, didn’t know that my testosterone was almost unreadable, didn’t bring any business cards for future contact, told me ‘you’ll hate me for saying this but I had thyroid levels like you, and I was tired and felt awful but my TSH was normal and then I had a test where it shot up and I started thyroid meds, I don’t think this is your problem because your TSH is fine, so I’m going to suggest CFS.’ Basically, she doesn’t know and has charged my £250 for 35 mins of utter crap.
in reply to Jamima
Did someone diagnose central hypothyroidism and is that a pituitary disorder?
My pituitary is a bit odd and my endocrinologist wants an MRI. Have you had one?
Just trying to puzzle out if I can suggest anything 💐
Jamima in reply to
Thanks Koala - a few on here have suggested secondary as that's what my symptoms and tests allude to. I'm just so down just now, I can't believe that endo, all she did was promote the benefits of hrt and say how marvellous she felt and how she'd really not want to have CFS, it's just awful. I'm so down, I'll pick up, but this is hellish.
in reply to Jamima
If you think it could be secondary hypothyroidism which it could be looking at your levels, I think the test would be a pituitary MRI.
You can refer yourself although a Dr referral is needed for contrast MRIs and my Dr ordered that sort for my pituitary
How are your other pituitary levels? Prolactin, ACTH etc?
Jamima in reply to
My LH is over range 62.9 (7.7-58.5) but that could be meno. My testosterone is below range <0.087 (0.101-1.43) they couldn't test my androgen index as T was so low and I know that has some correlation with adrenals. I don't have any others. A letter from my endo is coming and there may be ACTH in that. What else should I test re. pituitary?
in reply to Jamima
Adrenocorticotropic Hormone (ACTH) is a special blood test that is put on ice or frozen in some way immediately after they take your blood. It's the hormone made by the pituitary that stimulates the adrenals to make cortisol. My ACTH is undetectable - I have secondary (caused by steroids for asthma) hypoadrenalism.
Doctors rarely test ACTH but mine was done as part of the short synacthen test. What were your SST results? Your base line and peak cortisol, ACTH, anything else. They would be very useful for adrenal info. How is your DHEA?
Prolactin is also made by the pituitary, along with TSH and more.
It is possible to have some normal and some abnormal pituitary levels (to complicate matters). My TSH works normally - I have primary hypothyroidism.
If you believe you may have secondary hypothyroidism, then AFAIK a pituitary MRI would be a good test to do. You need a doctor who can see past the TSH and question its assumed reliability (it is more often than not an excellent indication of thyroid function BUT NOT ALWAYS).
I have no medical training whatsoever and can only tell you what I know through personal experience / what I have read.
Jamima in reply to
Thank you Koala - I appreciate you trying to help and I understand you're not medically qualified but you and others on here have given me more help and advice than I've received from any medic so far. I'm not in a good place just now, I need to have a think about what I can do next. I can't live like this.
in reply to Jamima
🌺
in reply to Jamima
Too fixated on TSH 😡
Jamima in reply to
I don’t take any meds.
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