I’m booked in for this test this month and I’m wondering if anyone can tell me if they know how accurate it is please? I had this test 4 years ago and results came back normal (I wasn’t given results just told all normal) I’m really asking because when I had it 4 years ago I felt ill for days after and because I’m feeling so awful at the moment I’m not sure I want to put myself through this test again only to be told all normal again. It’s being done in hospital here in London nhs. . I really would appreciate your expertise on getting this test as like I said I feel so ill even though my thyroid results are all in range now I can hardly get out of bed till 3pm most days. I have cfs so it could be that it’s the problem I don’t know. Anyway my endo said she would do this test just to rule out adrenals. I feel so low and finding things so hard to handle at the moment so Appreciate any advice please. thank you x
Short Synacthen test (cortisol) advice please - Thyroid UK
Short Synacthen test (cortisol) advice please
As far as I’m aware it is very accurate especially if done first thing in the morning as this is when you should have the highest amount of cortisol in your blood. I presume that you’re having it done because there is a question as to whether you have Addison’s/Adrenal Insufficiency? If so, then you also need an ACTH blood taken at the start of the SST. This is usually put on ice and sent to the lab immediately. This is especially important to have done if there is some response to the synacthin but not as much as expected. When I had my first SST I didn’t notice any difference because I was so ill at the time I guess it couldn’t make me feel any worse. However when I had another one I was incredibly unwell afterwards but that was because my body was so lacking in cortisol after having to stop the hydrocortisone for the test, that it went into crisis. Certainly if you are feeling so unwell now, I would go ahead and have the SST but make sure they do the ACTH too.
Timetraveler67,
Many members have suffered unnecessary invasive testing because the conditions caused by mismanaged hypothyroidism are not recognised as such by conventional medicine, ie adrenal fatigue, low stomach acid, gall bladder pain, menstrual/ovarian changes, post nasal drip, the list is varied and endless.
A stim test is considered fairly accurate in gauging the adrenals response but having it with CFS would be extremely stressful to the adrenals themselves. Have you asked why you are having another when previous results were normal? Is there another result indicating another stim is necessary such as a recent MRI?
An adequate response in cortisol levels following a synacthen injection only indicates the adrenal glands (& pituitary) are working when artificially stimulated. It does not evaluate how that cortisol is being used or the various levels through out the day (ie a normalised circadian pattern). We need good levels of cortisol working in a normalised circadian pattern to help our thyroid meds work effectively.
Adrenal reserve can become very low after years of propping up a failing thyroid gland. Your previous posts all indicate years of under-medication of Levothyroxine by symptoms and high TSH levels. You advise an intolerance to Levothyroxine and it will be the shortfall in thyroid hormone that is driving (or massively contributing) towards your adrenal issues. Levo intolerance is common with cortisol issues but also low iron. Have you had iron tested?
You could rind endos secretary to explain how worried you are and ask for a telephone consult with your endo to discuss the necessity of this test being repeated.
Thank you radd so appreciate your reply because I don’t feel I want to put myself through this test again. My endo is doing it again I think because even though I’m now on 100mg of levo I’m still feeling so very ill. At first she recommended I see a therapist then she decided do the test again. I just don’t know what to do I just want it all to go away but know it won’t and I have to fight. So just to clarify please, will the test cause my body some stress when they inject me with cortisol? I have gallbladder pain, ibs and always in stomach pain. Today I’m going fast I’ve not even taken my levo (is that ok) ? I want to try detox and just drink herbal tea is that good to do please can you advice thank you
Timetraveller67,
Levothyroxine doesn't always just work because there are essential cofactors involved that may need optimising. I have already mentioned iron (iron deficiency is very common in hypo's) but there is also Vit B12, folate and Vit D. Has your GP checked these recently?
Levothyroxine must be taken consistently and needs a certain amount of fats & carbs to metabolise effectively. Therefore, skipping your Levo dose and fasting will most likely make you feel more ill and stress your adrenal glands further.
I will now take my levo thank you. Medichecks a few months back and ferritin was on the low side, inflammation markers were up a bit, vitamin D was 80 so that’s good. Everything eles was in range so I need to work on my ferritin which is hard when everything I eat gives me stomach ache. Appreciate your help and like I said I’ve just taken my levo as you advice me
Great 😊
Dear radd please can you tell me what you think? As I rang and spoke to the actual nurse who was going to do the test I explained I had it 4 years ago and it came back normal and also that the test upset my system so therefore I wanted to cancel it. She said she was very surprised I could remember as far back as 4 years ago as that’s a very long time, she also said she was surprised I felt ill afterwards. Then she asked me did I know that Addisons can be life threatening and went on to scare me so much I agreed to an appointment to have it done on the 26th even though I don’t want to put myself through that test again. Can I have your thoughts please on what she said as I’m feeling anxious and don’t know wether to give in and take it or ring again and cancel. Appreciate your time thank you
Timetraveler67,
I am sorry to hear you are going through this. It sounds like the nurse effectively tried bullying you into submission by gaslighting.
However, any adrenal insufficiency is serious but studies show problems are more likely to be associated to some sort of HPA dysfunction than primary (ie the adrenals) in people with ME/CFS.
Did you ask why they were suspecting adrenal insufficiency when it had been previously eliminated? Did you ask if they had used both synacthin & ACTH to eliminate primary & secondary/tertiary adrenal insufficiency previously?
In order to make an educated and sensible decision as to whether you should move forward with this stim test you need to know what you were previously tested for and with which synthetic hormones, and what they are planning to achieve by testing again.
I read stimulating CRH (hypothalamus hormone usually used for Cushings diagnosis) can be helpful in people with ME/CFS when conducted by a savy competent endo used to interpreting unusual HPA dysfunction.
If you can't face talking to the nurse again, just write to your endo.
Dear radd thank you for replying to me I really appreciate it. It’s the same test I had 4 years ago they give me cortisol to see how my adrenals react, I asked why repeating it and she said 4 years is a long time Ago and because I’m complaining of fatigue the endo just wants to rule out Addison’s disease. I was quite ill before but she wasn’t listening to me when I told her this. My endo is not very happy when I question anything and because I have limited knowledge of any of this test I won’t write to her, I’m going to simply cancel the appointment because I can’t put my body through that again. Actually my endo is discharging me the nurse told me. You’ve been a great help radd I really appreciate your replying to me thank you
These tests can be very stressful and don’t give you the full picture of what your cortisol does during the day. Mine came back as ‘normal’ too. Problem with this test is that it isn’t designed to measure fluctuations. My saliva test then showed that my cortisol is low during the day and sky-high at night, not something a spot test can tell you. So you may want to do a 4 or 6 point saliva test too?
Hi and thanks for this information, will my endo do the test you did for me or did you do it private? If you did it private will my endo except it? She is not happy with me because I did a Medichecks last June which showed my tsh was 6.4 and my gp excepted it and put me up to 100 of levo. But I still feel ill. I can’t sleep at night is this a sign of high cortisol And what treatment are you on please? I appreciate your reply because I’m not sure wether to go ahead with the test or not thanks again x
HelloI had to go private. My private Endo is very thorough and did all the test.
I have secondary hypothyroidism, which shows with low T3 and T4 but THS being normal. The NHS only tests TSH, so I couldn’t get a diagnose for nearly 4 years. So I had no choice but to go private.My GP now accepts my diagnosis as my Endo is also an NHS Endo. I am on 175mcg of Levo as I convert well
My Cortisol is sky-high at night and I don’t sleep either. And low during the day, which makes me so tired and no energy. I don’t have a solution for this but someone suggested Holy Basil. I am trying this for the first time tonight, so can let you know how I am getting on with it.
Thank you so much for your reply I think I will have to private but I’m just worried about the cost. I’m happy to hear you got the help you badly needed it gives me hope. Yes please, will you let me know how the holy basil goes? I’m willing to try anything if it can help. Last night I soaked 3 Pure camomile tea bags for an hour and drank the tea before bed as they say camomile relaxes you, it helped a tiny bit but was still up till till 4am I’ll try again tonight. Look forward to hearing how it goes with the basil thanks again for replying to me
Dear pixieElv could you tell me please how it’s going with the basil because I’ve bought some But not taken it yet I thought I would ask you how it’s going and if you noticed any side effects at all. Thank you x
Hello thereI have noticed a real improvement. I sleep more soundly with no waking between 1-3am. I have noticed no side effects.
I would recommend it. Let me know if you do and how you get on?
Thank you pixie, I will start them tonight that’s good news no side effects And that your having good results, as I am so ultra sensitive to almost everything I Really appreciate your reply x
Recommended dose is 4x 2 capsules but I only have 2 capsules at bed time, well away from my NDT at lunch time. That seems to do the trick.I hope it goes well for you.
I’ve had a short Synacthen test twice. Both times I felt ok. I was also under investigation as my cortisol was very low and under range at 9am. Have you had the 9am cortisol blood test prior?
My cortisol remained too low it was only when it was determined that I am a very poor converter of T4 Levothyroxine to active T3. I have Hashimotos thyroid disease.
I was prescribed T3 medication my cortisol shot up and basically everything in my body started to gain strength and perform much better. Prior I ended up being housebound as I could barely walk. Have you investigated your T3 levels? Have you investigated if you’re a poor converter of T4 to active T3? There is a gene test for DIO2 to find out if your a very poor converter. This can be done by Regenerus laboratories. But it also can be determined by doing a full blood test of T4, TSH and T3 at same time. If your T4 is high but T3 remains low you’re a poor converter. Without T3 we really struggle.
Thank you for your reply, yes it was the 9am test I had 4 years ago. Please can you tell me who prescribed your T3? Was it your endo? Although my T3 is in rang (it’s just under 4) my endo says it’s fine she cuts me off talking if I even mention it. I believe what your saying it’s true and I really feel I’m a bad converter like you was. I have hashi too thanks again for your reply to me I really appreciate it x
Hi. My NHS Endo kept saying my T3 was normal and wouldn’t entertain a trial of T3 plus T4 Levo combined. I requested this and he said no. I found out later my T3 blood result was 3.9 (range 3.7-6.0). My T4 was right at the top of the range. So plenty of T4 Levothyroxine but very low level of T3. I was only converting 8%.
After joining this site I was advised I was a poor converter and I also did the DIO2 gene test through Regenerus Laboratories which came back positive. I was then advised by an administrator on here to see a private only Endocrinologist in Oxford. I live in Chester and still made the 400 mile round trip. He diagnosed me within 2 consultations and prescribed T3 straight away. It has been a really huge success for myself. I will private message you his name and details. It wasn’t that expensive either. He does telephone and zoom calls now which can be cheaper than face to face. I had years of struggling hoping the NHS would help me. They wouldn’t. It’s down to T3 costs within the NHS. T3 has been put on their drop lists all down to costs. Anywhere else in the world it’s relatively inexpensive. Just our NHS has a very poor supply chain and procurement process.
If you can go private. I think he will be able to sort you out.
You’ll need a GP referral letter to get your first consultation.
I know how awful it can feel and how abandoned one can feel dealing with the NHS and this disease.
Keep positive and know that you can be helped by going to the right person.
Thank you I look forward to Receiving your message x
Just sent. Any questions just ask me.
If you want to know about preparation and timing for the SST, what exactly happens, and how results are interpreted (or should be interpreted), you need the Endocrine Bible.
imperialendo.co.uk/Bible201...
See page 68 - 70.
And for info on Adrenal Insufficiency see this page :
en.wikipedia.org/wiki/Adren...
Note there is more than one type: Primary, Secondary and Tertiary, and they are identified by different tests or combinations of tests. If (for example) you've got Secondary Adrenal Insufficiency it won't be discovered if ACTH isn't tested.
Thank you for sending the links which I’ll check out later, really feel pressure to take it but was so ill afterwards 4 years ago I don’t want to put my body through that again. I hope I can take it all in I will really try as I know it’s important for me to understand what’s going on. Really appreciate your reply thank you
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