I was basically told i had Addisons after i got these results back from a blood test and was put on steroid tablets, but after a subsequent synacthen test 2.5 month later i was told i hadn't got it as my results were borderline so taken back off the medication , i have posted my first set of results here which were 2 years ago,
I requested the test again and my last tests are also listed, can anyone on here understand the results, i do know the cortisol level is low on the first test , but i have little understanding of any others.
I forgot to add that i requested a cortisol test last month, ive not been on no meds, and the result was still borderline 460,
what i cannot understand is that i had the cortisol reading of 38 nmol 2 yrs ago with no previous hydrocortisone, then last month i had a blood test again and been on no meds and a result of 430 nmol
My understanding of it was that the low figure cant be raised unless you have hydrocortisone, or am i wrong ?
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Hello Freddy1000, I can’t give you a detailed answer as I do not have enough knowledge. My daughter had Secondary Adrensl Insufficiency,following treatment for Cushing, which is very similar to Addisons. I think you need an endricronogist who knows what they are doing.and that once you are on steroid replacement that test becomes useless as of course your results will be higher. If you don’t get detailed answers here there are Facebook groups who know their stuff. If you needed steroids to replace Cortisol it is unlikely you will have made s miraculous recovery on your own. I wish you luck.
I was referred to endo but they didnt seem interested with me, just said no you havnt Addisons, and when i asked about the low cortisol on the first test he just shrugged his shoulders,
I think Murray58 was referring to secondary adrenal insufficiency which on the whole is the same treatment for Addison's, she wasn't referring to the Cushing's. Those of us who have had Cushing's due to either a pituitary or adrenal tumour develop secondary as a result of the surgery, this may be temporary or permanent.
Murray58 is right when you have addisons a recovery is unlikely especially after being on hydrocortisone for a while, after the 2nd synacthen test (day profile) instead of stopping the hydrocortisone it should of been reduced then test redone months later. The only thing I could think of is if you had an underlying illness which made it look like addisons.
If you are off steroid’s now then the day profile should be repeated after a few months (don’t trust any answer of its borderline by anyone, always get a copy of your results for a second opinion).
Please also think about your vitamin D as it is really important, (FYI - I’m on 3 25ug a day which took a while to find the right dose).
I hope you find the answers your looking for & best of luck 🤞
Last year I had border line Addison’s. My cortisol was 68. My thyroid TSH was high meaning I was under medicated. I was put on hydrocortisone medication but it just made me fall asleep. I had two synacthen tests. The first border line as it hardly raised. The second weeks later was much better. But without the false ACTH injection my cortisol would remain low for 12 months and I was in a state. I couldn’t hardly walk or sit up. After lots of collapsing and hospital emergency visits the NHS also kept shrugging their shoulders and leaving me in a mess. I was referred to a neurologist and a cardiologist as my heart rate was only 42, both found no issues. I was still very very weak. Finally after joining this site I was advised to see a private only Endocrinologist in Oxford. Very quickly I was diagnosed with very poor conversion from T4 to T3. NHS still would not entertain T3 medication due to costs. By now I’d lost my job. So my private Endocrinologist gave me a prescription for T3 which I got from Germany at a ridiculous low price. From day one of taking T3 medication I could not believe the improvement. After a month I got my thyroid bloods done. All back in range. But to my amazement my 9am cortisol has significantly increased now to 311. Wow. So thyroid and cortisol all back in range now and I feel fabulous too.
So for me adding T3 also fixed my adrenals.
This may help you T3 certainly helped me. Have you had your TSH, T4 and T3 checked. If your T4 is high and T3 low and TSH still high then you need to consider T3 medication. All NHS Endocrinologist that I have seen have not recognised this. This is because the NHS will not pay for T3 medication anymore. And if they do it has to be approved by your local CCG.
If you need my private only Endocrinologist at any point please message me.
I find it really sad that you can be so ill and neither a neurologist or cardiologist would be concerned, especially with such severe symptoms and such a low heart rate, thank goodness you found a good private endocrinologist. I’m currently struggling with neuro, muscle/joint and numbness in arms and legs symptoms and terrible nausea. Going to have privatise blood tests next week and depending on the results may well ask for your Endo. details. Willing to travel and pay to feel human again.
So good to hear with the right treatment this is possible! The lack of support to reach optimal health is a tragedy for so many, thank goodness for forums like this to let you see you are far from alone!
I was advised by an administrator on here who to contact. I can’t thank them enough now. It wasn’t that expensive to get your life back.
I also had numbness. At one point I thought I had MS. I went to the John Radcliffe in Oxford to be tested for myasthenia gravis too. What a waste of money, time and hope. I’m so glad I don’t have those diseases. It was quite worrying at the time which lasted months. It was an Endocrinologist at my local hospital that sent me down the neurological route. He said I had no Endocrine issues. I even paid privately to see a neurologist. My blood tests then was the same results as the private Endocrinologist diagnosed with converting disorder. So I truly believe the NHS Endocrinologist was swerving the T3 hot topic issue due to costs. I was sent down a rabbit hole. Neurologist said I had functional disorder. When I saw that, that was the point I said to myself that I can’t have that. As it means no help or medication at all, as they are basically saying they haven’t got a clue and just leave you. I asked what on earth could be done to help me. They said they had a new clinic for unknown issues to help you mentally to accept it. All I ever needed was T3.
I hope you get sorted. I don’t wish to add any worry to you’re already bad symptoms by telling you about my experiences. I have many more too the past year. It’s as though because no one can actually see Endocrine issues and only we feel the symptoms that some Drs hide behind this somehow.
I hope you’re not too bad today and you get some answers.
Remember if you need the private Endocrinologist details just message me. He is one of the most respected Endocrinologists in the UK.
I have had some similar issues, Pam and T3 saved me too. They never seem to acknowledge its worth in the physical health of a patient and revert to it therefore as being a mental health matter. I wasted so much time on many NHS appointments and tests. It ended my relationship with my partner, and nearly lost me my job too. What will it take to acknowledge it and stop damaging so many lives?
Gosh this is awful. I’m very sorry to hear what’s happened. Why the hell are we all suffering so much. In my opinion the NHS is a disgrace for thyroid patients. I’ve never needed them until this year and boy have they let me down. Looks like they’re letting 1000’s down. Maybe some areas are ok but some are definitely not.
Thanks so much Pam, appreciated! I’ve had various neuro mimicking symptoms for years and was investigated for MS inc lumbar puncture over 25 years ago. Finally got told I’d got vertiginous migraine and been on low dose of Amitriptyline for that since as the vertigo was horrendous, never ever had a headache!
Worked professionally during this time and really struggled to hold it all together, have really thought I’ve been going mad for years, terrible and worse still once menopause hit, but just getting on with it and telling myself I’m feeling sorry for myself and to get a grip. Had large tumour in my salivary gland Nov 17, had surgery and felt very strange ever since, was diagnosed with hypothyroidism in Sept 18. No advice n guidance despite TPO levels indicating Hashi’s , TSH 37.5 and low B12 but no mention of treatment, etc just put on Levo and tritrated up to 100mcg but feel worse not better despite TSH now being in optimal range. (BTW my mother has same and now has severe osteoporosis - multiple fractures, pancreas and liver issues so very keen to be proactive as she has very poor health and at 73 if the longest living female on that side of my family, they’ve all had serious various autoimmune diseases.)
Haven’t worked now since June 18, between supporting elderly inlaws, looking after grandchildren and my father with end stage lung cancer I just couldn’t juggle work too. Normally such a busy, lively, fun person I feel a shadow of my former self. I think I will be contacting you for the details of the Endo, but will wait to see what happens next week.
You’ve given me other options which is music to my ears, so thanks for your story and hope! 👍😘
I’m so very sorry to hear all this. This must be awful for you. Low B12 should be treated with B12 loading injections. TSH in optimal range.. mine got to just at the top of the range. But my Endocrinologist said it needs to be 1.0 as the NHS ranges are far too wide. Mine is now just below 1.0. It’s. Ever been that good in the 12 years I was on Levothyroxine alone. Please ask for all thyroid T4. T3. TSH. If T3 is low then you might need it. I had terrible migraines but they’ve gone now. I also thought I was having a stroke a few times. My face would go numb on one side and I’d get double vision. Again all gone now. I had a great job at Rolls-Royce. I was a contractor so after 6 months unable to work I lost my contract. I have savings so also got now help off the government. Then insulted by having to go private. I’m mad as hell with the local hospital Endocrinologist for sending me on a wild goose chase to neurologists.
I’m very sorry to hear about your mum and other female family members. T3 may not be your answer but it’s worth a try. I know exactly what you mean when you say you feel a shadow of your former self. I’m glad you’re off hydrocortisone if you don’t need it. How long where you in it. It makes what adrenals you’ve got left go to sleep and can take a good period to wake up again. Did you leave 48 hours prior to your synacthen test. You have to leave 48hrs or the medication will effect the results making it higher. If you can stay off steroids all the better. You don’t want to be stuck on them unless you really really need them. How long was you in them.
You can and will get better. Believe in it. Get as many blood tests via your GP as you can. I got all mine on the NHS even though I went private. I only ever paid for the consultations. If you do go private just take all your most recent tests with you. Or ask the GP to send them with your referral and keep copies yourself. Be positive as you can. You will get better.
Thanks Pam, I am a positive person by nature so definitely focused on getting well and trying to park the negative, 🤪👍.
I’ve never had adrenals checked so think that you may be thinking of others posts on this same thread too, sorry for the confusion. 🙈
Our GP won’t /can’t test T3 to check my conversion hence I’m doing the full thyroid and vitamin panel privately through medicheck but getting blood drawn for it at GP’s and paying them £25 to take it for me. Once I get those results and speak to GP again I’ll decide my next steps, hopefully on the NHS but wont hold my breath.
You sound like your journey has been similar to mine and interestingly before this all started 25plus years ago I had one side of my head/face numbness issues, how weird!
Think my body and mind is now saying ‘why the hell are you still ignoring me - I’ve given you so many chances to get this right’ and making sure I have to focus on getting to the bottom of things as it’s been running on reserve for far too long.
Thanks for taking the time (and energy) to reply to me today, you’ve made the day easier by keeping me positive on one of the bad days!
Hi Freddy, I am an Addison's patient due to long term steroid use - and it is not a nice thing to have believe me - if you can keep off steroids for life to keep you alive - I would err on the side of being glad you aren't going down that road but I understand if you are feeling unwell and want a solution. I use two forums that are for Addison's patients and give you the links here - you could ask the experts on there for help they are very good.
You have only had your TSH done so hard to comment re thyroid. Was there a range for the cortisol? Could we have a list of symptoms and if possible your pulse and temperature? You really need your T4 and T3 tested as well as your B12, folate, ferretin. Also you might want to ask for thyroid antibodies. Your vitamin D is too low and you need to supplement with some D3 and K2 to get your levels up with about 10,000 iu daily.
The 1st test was bodged as no-one told me to stop taking it, and the result was 470 , so in my view if i was taking the hydrocortisone and having the test with a result score of 470 and it was borderline, surely it would have been lower if i hadn't took it
(2nd test) result of 430 I was advised to stop taking the hydrocortisone for 24hrs
Did they remember to test ACTH before testing cortisol? Addisons means that you make plenty of ACTH but adrenals don't respond to it, Secondary adrenal insufficiency is the other way round (adrenals probably fine but little ACTH). If you were on meds, of course your results would be better than when you were not on meds BECAUSE you were on meds (which were taking the place of your own adrenal function). Not a reason to stop them. it's a bit like saying "car is out of petrol, so let's fill it up. Later ... oh, petrol gauge shows car has petrol, let's not bother filling it up again - ever"
Anything between 100-300 needs referral to an endocrinologist.
300-400 is a bit of a grey area but is unlikely to get you a referral to an endo and is unlikely to be adrenal insufficiency.
This is clearly why you were diagnosed with adrenal insufficiency following your first 9am cortisol of 38 nmol.
The next step for anything of 300 or below at 9am is an SST. This is used to confirm diagnosis of adrenal insufficiency, by a poor response to the synacthen injection.
At this point it’s important to point out that low cortisol and / or a failed SST only diagnoses adrenal insufficiency as an umbrella term.
There are actually three different types, the two most common being,
2. Secondary adrenal insufficiency (this is NOT Addison’s disease).
Primary insufficiency (PAI or Addisons) is where the adrenal glands themselves do not work. It doesn’t matter how loudly your body ‘shouts’ at them, they just won’t work.
Secondary insufficiency (SAI) is where the adrenal glands themselves can work, but they are not getting the message to respond. In this case the ‘shouting’ is not happening and it’s because the problem here, is that your pituitary gland is not working as it should.
When the SST test is done, they will also measure your ACTH which is basically the chemical message (shouting) from your pituitary to your adrenals telling them to work.
In very simplistic terms, if you are PAI (Addisons) the ACTH result will be very high, because the pituitary gland is ‘shouting’ very loudly at the adrenal glands to respond, but because the problem lies with the adrenal glands themselves, they still don’t do anything. (A bit like flogging a dead horse- you can beat harder and harder, but it’s still not going to do anything... because it’s dead!)
If you are SAI then your ACTH will be low or low/ normal as it’s the pituitary that’s not working properly so it’s not sending the message that it should do, to the adrenals. (This is a bit like a sleeping horse with no one doing anything to wake it up- it just keeps on sleeping)
You need to know what your SST results were and you need to share them.
What’s unusual is that your second 9am cortisol has come back at 430nmol, which is very much normal and a complete contrast to your first test.
This would lead me to believe that at the time of your first test (38 nmol) your adrenal glands were like the sleeping horse, so just not awake and not functioning- therefore far more likely to be secondary adrenal insufficiency.
If you were Primary insufficient (Addisons) then there is no way your adrenals could have woken back up for test two (430nmol) - as with the horse analogy- in primary the horse is dead! It can’t come back to life at a later date!
Have you ever used any form of steroids that weren’t the HC they gave you? Like asthma inhalers or hydrocortisone creams for skin conditions?
However, all of this is hypothetical, as without the results of your SST and knowing the ACTH it’s pretty impossible to say.
How do you feel now you’ve stopped the steroids?
Hope this helps a bit and doesn’t confuse you further! 😀
To be quite honest i didnt feel any better when i was on the hydrocortisone which i was on for a few month, and i didnt feel any different when i stopped them.
I only have coded access from my gps that is where i obtained the posted results, what do sst acth results look like and tell you as i thought that was what i was posting up lol
Im doing alot of reading up, as i have a history of accoustic neuroma since 1988, removed 3 times and i still have a small one, it has me wondering now if there is any link between the aac neuroma and the pituary gland function.
you are very knowledgable and what i have read from your posts make a hell of alot of sense, Thanks
1) Baseline cortisol taken at 0 minutes before they give you the ACTH injection. (This doesn’t have to be at 9am but they often do them around that time anyway)
2) 30 minute cortisol value (which should have risen to a minimum of either 430 or 500, depending on whether the lab use one of the old machines or new machines)
As well as rising above the threshold value, the 30 minute value should also be a minimum increase of 200 nmol above the 0 minute value.
Could there be any chance that your 430 result is actually the 30 minute value after the SST injection, rather than your baseline value at 0 minutes?
There should also be a baseline (0 minute) ACTH Reading, before they give you the injection. This tells you whether at that time your pituitary was:
1. Shouting loudly at your adrenal glands to work (ie ACTH would be high), as seen in Primary / Addisons
2. Not telling your adrenals to do anything (ie ACTH would be low/normal), as seen in Secondary.
A few other helpful questions:
What’s your blood pressure like?
Do you tan easily?
Do you crave salt?
Do you ever have low blood sugar?
How many years have you used the steroid inhaler for?
If I were you, I would try and get a print out of your results from the GP, as it will really help you to understand what’s going on.
If (and it’s a big if) the 430 nmol is the 30 minute result, after the ACTH injection, that is barely a pass, even on the new machines.
If it is the 30 minute result then you could easily be in the earlier stages of primary (Addisons) as the adrenals don’t go from absolutely fine, to completely dead overnight, it’s is a gradual process.
The only way of knowing this is to get your ACTH result (or if they didn’t do it, you need another test where they do). If you are early stages of primary then the ACTH will be elevated / at the top end of the range.
The reason I ask about tanning is because the raised ACTH in primary causes pigmentation / darkening of the skin, so you will tan easily.
You should also ask to have your aldosterone tested (which regulates your sodium levels) and is another adrenal hormone. If you are in the early stages of primary then your aldosterone will be right at the bottom end of the range.
Of course a 430 nmol result at 30 minutes could also indicate secondary insufficiency, as the longer the adrenals are suppressed, the more blunted the response to the ACTH injection.
When did you have your last SST?
Did you get to discuss the results with the endocrinologist? Or were you just discharged by letter?
The first was bodged as they didnt tell me to stop taking the hydrocortisone, the test went ahead still however and the cortisol result was bout 500 which puzzled me as i was still on the meds and then the 2nd test of 430 without taking the meds for 24hr
I did see an endocrinologist professor but he just said no you haven’t got Addisons , when i quizzed him about the low cortisol originally he just said i think the best thing is for you to have tilt table tests which im waiting for still as my docs messed that up twice 😏
The problem with adrenal insufficiency is that it’s complex and a lot of medical professionals don’t understand it. I am lucky in that I did a biology degree, so have found it easier than it is for most to read up and understand for myself 😀
I was diagnosed quite early with my Addisons, so quite a few of my results were borderline, so I needed to understand what they meant and how they were being interpreted, especially as I didn’t think I was poorly enough to actually have Addison’s when they told me!
Diagnosis for most is made more complicated for people by the fact that the term Addisons is used incorrectly, by a lot of people to describe secondary insufficiency too.
I would suggest that you go back to the GP and ask for another 9am cortisol- it is a very simple and cheap blood test that they can do.
Here is a link to an official document you can take with you to the GP, which helps them to understand how to diagnose Addisons and how to refer to an endocrinologist based on the results of the 9am test.
The primary care investigations section on page 2 is where it’s got how to interpret the 9am cortisol
It’s important to point out to the GP the statement that says in the earlier stages patients may have 9am cortisol results closer to the higher end of the range
Remember- it’s not an on and off switch and the adrenals don’t go from 100% fine, to completely dead overnight!!!
Once you have another 9am cortisol, pop back on here with the results and we can talk you through preparation for the SST; what to ask for and what to make sure they do.
A lot can change in 2 years, so I highly recommend another 9am cortisol, which will likely lead to another SST.
It’s also worth pointing out that if you have secondary insufficiency (ie your adrenals work okay but they’re not getting the message from your pituitary), it is perfectly possible to pass an SST.
Passing an SST rules out primary insufficiency but does NOT rule out secondary.
The reason for that is that the injection they give you, tells your adrenals to work; if it’s secondary, the adrenals can still work, as previously mentioned, they’re just not used to getting the message to work from the pituitary. In this instance, when they get the message from the injection, they spring to life and you get a good response and pass the SST.
At this point a good endocrinologist needs to book you in for an insulin tolerance test (ITT) to rule out secondary insufficiency.
I wouldn’t worry too much about that right now though- print the leaflet and head back to your GP for a 9am cortisol 😀
If you like scientific papers, this one is really good, but if you find it too complicated, don’t get bogged down in it; it doesn’t say a whole lot more than what i’ve already explained, just in more simplistic terms
I fully hear what you are saying and agree entirely. I’m still bemused why if my cortisol was 68 (155-607). And my ACTH was 0.5(2-11) what on Earth was wrong with me. Adrenals have now woke up but only with adding in T3. I had many low cortisol and ACTH results but they just kept saying I had no Endocrine issue. I thought I was going to die without being too dramatic. It went on for a year. In and out of hospital and collapsed many times. How i survived I dint know. And how T3 cured it all I don’t know either. I’m very glad but confused about why they didn’t help me properly. I had to go private.
Yes I past the Synacthen test but they’d given me 100ml of hydrocortisone only 8hrs previous to it in hospital and no the Endocrinologist cancelled the ITT only 2 days before it was due. I’d been waiting weeks. Then he sent a letter to my GP saying I had cancelled it some weeks later when I questioned why. He forgot that he’d sent another letter previously saying he decided not to go ahead with it. I don’t know why he behaved in this way. I did write back to him and copied my GP in with a copy of his letter saying that he actually cancelled it. I believe this maybe all down to me requesting a trial in T3 as he was quite abrupt about my request for T3 It’s the only thing I can think of. So I was left in a right state for about 10 months. Back and forth to A&E as I kept collapsing at home. My cortisol was low every time and just kept saying that they didn’t know how to help me as the Endocrinologist had now referred me to neurology and I needed to wait for my appointment. I made a private appointment to see a neurologist. When I got there the Endocrinologist that referred me was talking to the neurologist at the private hospital. I couldn’t believe it he was also private/nhs. The neurologist said I had no neurological issues. So then after being on here I was advised to see a top Endocrinologist in Oxford. Within 2 appointments he diagnosed me with not converting T4 to T3. He did say the previous Endocrinologist was talking bollocks about neurology. Amazingly my cortisol is now 311 on the last 9am test. And I feel so so much better. Maybe my body was on a go slow or something. Everything felt like it was shutting down. I’m not right all the time now. If my TSH goes slight too low or too high I go very weak suddenly. I have blood forms that my GP gave me so I can go straight away to get bloods checked. Whenever I go weak and got my thyroid checked the TSH has either been just slightly too low or slightly too high. So I adjust the medication and I’m fine again. I don’t know why this has happened as for 11 years previous I would be unaware if my TSH was out. However in 2014 I did collapse and went lost consciousness and vomited all very suddenly. After a while my bloods revealed my T4 was at 20 (7.86-14.4) miles too high. Once Levothyroxine was reduced I was better. But for the whole 12 years I’ve had weird energy loss going on. Where I’d collapse in work or out walking the dogs. They never knew what is was. My new private Endocrinologist said my conversion disorder is genetic and I’ve prob had it for years. So all along it seems as though I should have been on T3 and struggled through until last year when I hit a brick wall.
Sorry for long reply. It’s been a hell of a year. Now though I feel 20 years younger. Don’t look it but the feeling is fab. I forgot how good it feels to be normal. At last my Endocrinologist got me well.
I hope you’re ok. Sorry for going on about me so much.
You seem knowledgable on the adrenal side. Have you had adrenal issues. My sisters 9am cortisol was 100 last month. She also past her synacthen test. She had thyroid cancer and they won’t give her T3.
I spoke to my gp this morning, the pre acth test was 340, post acth was 520 , he said it was pretty much normal, I asked again why I had an original test score of 38 at 9.00am he said it can be caused by other illness , my general health isn’t good , ive had accoustic neuromas since 1988, 3 removed , and currently under monitoring for the present one which is stable , and High blood pressure, osteoporosis of the knees and wrists, and a range of other problems
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