Hi
I’ve got Hashimotos and seeing an endo next month due to low cortisol. My GP said he’ll do the synacthen test (I’ve only had the 9am blood test).
I’m currently taking Levo, vitamin D, K, B complex, C, magnesium and selenium. Does anyone know if I need to drop these supplements (minus the levo), for several weeks prior to my test please? I’ve had enough delays for a diagnosis and can’t risk any more!
Thank you.
No, you only need to stop birth control pill, HRT or steroids prior to a SST. Clemmie
Thank you.
Hi
Is there any way he would do the cortisol and dhea saliva test instead. It’s far better and if you miss out on three cortisol readings in a day/ night and dhea the info is pretty limited. Also I found the results far less reliable.
I think cost can be an issue so I paid for my own. Boy what a difference- v specifics and I was able to get far better help and health.
Good luck.
NHS doesn't recognize or do saliva tests as far as I know. If you want an NHS diagnosis, you need to do synacthen test, then perhaps CT or MRI scan and/or insulin stress test, depending on results of synacthen test.
Some Endo departments will do saliva tests but mainly to check for high levels of cortisol not low levels. The synathecen test is the gold standard to test for Addison's/secondary insufficiency.
Thank you Pauline.
What is secondary insufficiency please?
Addison's is when the adrenals don't work properly and don't make cortisol, Secondary insufficiency is when the pituitary doesn't send messages to the adrenals to make cortisol. Both have the same effects it that you need to take replacement steroids to make up for what you don't make naturally.
Thank you for that. Maybe I won’t pay for a saliva test as recommended above if the nhs won’t recognise it then as I can’t afford to see a private endo for follow ups.
Thank you Angel. What do they do a scan of please? Is it th adrenal gland? What would the results of the synacthen test need to be in order to need an mri?
The scary thing is that I can't remember anything about my scan. I remember turning up and going into the waiting room, and leaving but nothing in between! I'm sure someone else can tell you. I do remember insulin stress test and I will NEVER have another one.
Omg what happened in the insulin stress test?
The actual test was fine but at the end, I walked out, got as far as the hospital car park, got bad nausea and dizziness, with back and stomach ache (ie all the low cortisol symptoms) fell down and couldn't get up - lay there for a while and eventually managed to get a taxi to take me home. Off work for two days. I just lay on the floor in the hall for much of it. And the test came back normal - how is that even possible?
Oh my goodness that sounds awful. I’m glad you’re ok now. I didn’t realise low cortisol caused back ache. I’ve had a bad lower back for 3 years, could this be the cause?
Thank you.
It doesn't cause constant back pain AFAIK, just a sudden pain when cortisol is really low: see healthline.com/health/acute...
Thank you. Do you mean a cortisol saliva test? I had the blood test already. I was thinking of paying to have a private saliva test but didn’t want to waste money if it wasn’t necessary. Do you think this will answer all he needs to know?
Where did you have yours done please?
Hi
They do where I generally work and the patients are treated accordingly.
New research is being done to see if low dhea levels and pregnenelone can also raise cortisol levels.
Sorry the one test misses many things. What’s the point in testing only one hormone and once in the day? You can have low cortisol and have high or low dhea. If that’s the case you will be unable to sleep in the first instance and shattered in the second.
Hope all goes well
Hi
could you please let me the surgery or hospital where you work and what particular test they do there.
Thank you.
Thank you Howard. Yes I am unable to sleep and am shattered too. Should I ring the hospital to see if their policy is to accept saliva tests? I don’t mind paying for that prior to seeing an endo to help speed things along.
Is the pregnenalone a tablet or natural hormone? Please excuse my ignorance, this is a new area to me and I’m struggling to know where to start!
Hi
You can pay privately thro say Genova- each endo has their own ideas on thyroid meds and adrenals are the same too. So some will accept a saliva test and others not. Just like some prefer thyroxine and others suggest t3.
The point I was making was that you could be low on cortisol and have normal dhea in which case the nhs test could be fine. I can only say that in my case and people I’ve come across this is not the norm. ( if the people who have had the saliva test) Broadly speaking and i too have a specialist with 5000 patients ( who recently did a study) that low dhea and high cortisol is the most common group.
If you are diagnosed with low cortisol then you ahould receive treatment but you’ll never know where your dhea level is.
If you read Sarah Myhill. Co. Uk- adrenal gland the gear box it goes thro the computations and treatment. She’s also written 15 books on everything from diet cfs throid diabetes etc.
In answer to your question yes pregnenelone is a supplement used when you have low dhea levels ( there are other products too)
You will be tired if either dhea is low or cortisol is low. High cortisol makes you feel like you are anxious and the brain is racing. High dhea stops sleep - this is rarer tho.
Please do not think I am saying don’t have the two( hopefully) tests just be aware that it’s half the picture.
I really wish you well and you get to the bottom of what is causing the issue/s.
So many people post results on here re thryroid issues. Adrenal issues are just the same.
Do you take / test your core temperature wth a basal thermometer?
Thank you very much, that’s really helpful.
Yes I’ve posted thyroid results too, hopefully people will help me get to the bottom of my adrenals too.
I’ve never taken my core temperature. Should I be doing this? I’m generally always cold which I put down to my underactive thyroid.
Hi
You are welcome. Yes is the short answer- especially as you are cold and it’s looks like you may need treatment.
A basal thermometer of amazon is the one to go for- pretty inexpensive. Once your adrenals are hopefully sorted out you need to aim for 37 degrees. It’s digital so you can place is say under your arm- wait until it beeps and record where you are. You could consider b fore your meds day 2 hrs later then a couple more during the day.
Everyone is different but under the tongue is less ( say half a degree) I don’t use it anywhere else.
The idea is when you increase meds/ introduce them you hopefully will feel warmer and it will reflect in the temperature. It a cheap way of checking how you are doing as well as how you feel.
Good luck
Thanks for that. I’ve got a digital thermometer that can go under the tongue, will that be basal or would it say on the box? Do I need to do it when I wake up? Would that be at 2am or Hope I get back off and try 630am?
Hi
It should say on the box and it has like a wand at the end.
I’d use under your arm - you are cold so it’s a truer reflection. Mine cost £4 ish. No mercury.
I’d be surprised if yours was not low- so indicating you are undermedicated. You need both adrenal and thyroids to be functioning well plus vitamins optimal and hopefully you absorb your food/ meds well.
If you need any help please don’t hesitate to message me.
Sorry no don’t get out of bed- 6 am is ok. You might not get off again. That middle bit of the night is tough.
Best wishes
I never get back off! I’m always awake for minimum 3 hours then something clicks and I feel tired again, we’ll like I can sleep. I’m always tired!
Thank you very much. Mine is a Brain age precision, it does look like a wand but doesn’t say basal on the box so maybe isn’t.
Yes I’m working on my vitamins too as am vitamin D deficient and am taking other bits to help my thyroid and adrenals.
When you say looks like I need treatment, what would that be please? Presumably something to raise my cortisol? Does it have an immediate effect or could it be months and take ages to fix my insomnia?
High cortisol also gives you insomnia because you are so wired!
Yes you are right. Mine is v high. Luckily it can be helped with adaptagens.
You're lucky then as most people with high cortisol have Cushing's & need surgery to remove the tumour causing it!
Lol that’s not true.
See stopthethyroidmadness under cortisol high. There is a huge section on how to combat it.
Looking at that site it seems to be referring to cortisol that may be a bit higher than normal, I'm talking about when the body is producing excessive amounts of cortisol, there is no way if that occurs it can be treated by over the counter meds or supplements. If a person has either a pituitary or adrenal tumour that is producing too much cortisol then the treatment is surgery, it is a life threatening condition where the person can die from the damage done by the high levels of cortisol. Drugs can be given to reduce the levels prior to surgery but they also carry a huge risk. I know this from a personal experience of having Cushing's, also I run a support group for people who have this condition, most of us would be delighted if a few drugs could cure us instead of going through traumatic surgery! Even following surgery we are not cured but are rather in remission as the tumours can regrow.
I appreciate what you say and it is great you help others too.
My cortisol is 99( range 2-10) I do not have a tumour and whilst nothing is perfect I am helped by the supplements I take. As a woman I have experienced first hand a tumour elsewhere so I understand the trauma the side of of months of treatment causes.
You appear frustrated with me and that’s not my intention to annoy someone - I always respect someone else’s experience and view point.
I don’t have the percentages to hand but from people/ patients I know and speak to there is an alarming number of high cortisol with no reason to operate as they don’t have a tumour or nodules. Many sadly have been left untreated for thyroid issues and have low vitamins.
Best wishes to you
Yes I feel wired but tired at 2am every morning, for the last 10 years...
If you have the SST test and are told that the results are normal and you don't need treatment, then that is when you should spend money on doing a cortisol saliva test which includes a DHEA result. Ask for advice on who does this before you order. Some companies don't include a DHEA result which limits the usefulness of the saliva results.
For info on all the tests an endocrinology department will ever do, take a look at the following link :
imperialendo.co.uk/Bible201...
For info on the SST test - how to prepare, what to expect, and how it should be interpreted, see pages 68 - 70 in the above link.
Please note that some SST tests don't include testing ACTH. For full information this needs to be done, and the sample must be put on ice and sent directly to the lab for testing. Another thing I've heard of happening is that only one sample is taken for a cortisol test which is done at either 0930 or at 1000. To get a full picture both need to be done.
If you print out pages 68 - 70 and take them with you you can wave it under the noses of the people doing the test. Tell them where you got it from. (You could print out the title page of the document as well.)
To get the test done accurately you need to be on time and not under stress. Leave home in plenty of time, use as little effort as you can get away with. Sit down rather than stand up, lie down rather than sit down. Don't read anything exciting or annoying, don't get into arguments, in fact don't talk more than you have to and don't gossip with anyone.
It is a good idea to ask about the test in advance and make sure that ACTH and the two cortisol tests will be done, rather than argue with nurses or doctors on the day.
Thank you so much for this. I shall take a proper read later when the children are in bed. I’ve had two cortisol blood tests, both bang on 9am, one was 235, the next was 222.
I wasn’t told not to get stressed beforehand, but I did my own research and guessed this would be better, so did my best to keep chilled before I went!
Thanks Human bean. I saw the endo who was utterly useless. He said he’ll do a synacthen test but doesn’t think I’ve got Addison’s as I wouldn’t have been able to give birth and raise two children.
I asked about a saliva test and he said he only does them for high cortisol
If I pay for a saliva test, will my GP take notice of this, because it sounds like the endo won’t.
He said if I don’t have Addison’s he can’t help me. If I have insomnia I should see my GP for sleeping tablets!
I feel so annoyed. I’ve waited ages for this appointment and got my hopes up. I just don’t know who to see who might help me! Can you recommend a specialist?
Many thanks.
If you pay for a saliva test I think you should assume that you are doing it for your own benefit. If your GP does show an interest then it is an added bonus.
I was under the impression that Addison's was something that came on slowly. To quote Wikipedia :
"Addison's disease, also known as primary adrenal insufficiency and hypocortisolism, is a long-term endocrine disorder in which the adrenal glands do not produce enough steroid hormones. Symptoms generally come on slowly and may include abdominal pain, weakness, and weight loss."
Source : en.wikipedia.org/wiki/Addis...
According to an NHS webpage on the subject :
About 8,400 people in the UK have Addison's disease. It can affect people of any age, although it's most common between the ages of 30 and 50. It's also more common in women than men.
Source : nhs.uk/conditions/Addisons-...
Based on these quotes I can't see why you having had children would preclude you from having Addison's Disease, and I'm not sure why your endo thinks this makes you a more unlikely candidate than anyone else.
Do you know how long you will have to wait for a short synacthen test? I hope it isn't long.
.
I can't help you with finding a specialist, sorry. Have you ever asked for the Thyroid UK list of "good" endos? If you haven't then write an email (not a PM) to :
louise.roberts@thyroiduk.org
and ask for the list. You could mention that you are looking for one who is helpful to people with Addison's Disease - I don't know if that would make a difference in the list you got though. The list is sent to you as an attachment to an email.
.
If you get a saliva test done, the one you need is either a Regenerus test or a Genova Test - there is no advantage to getting 6 saliva samples, 4 is enough. And both these companies include a DHEA test in the results - other companies don't :
gdx.net/uk/product/adrenal-...
regeneruslabs.com/shop/prod...
Some info on these two companies can be found at this link :
thyroiduk.org.uk/tuk/testin...
Note that the way Genova does business with the general public is a bit weird, so read up on how to order and how to get your results in the link immediately above.
Thank you. I’ve just ordered the Regenerus test. Hopefully this will give me some answers and my GP will be interested!
Thanks so much that’s really helpful.
He said I’ve had insomnia for 10 years and Addison’s wouldn’t take that long to get hold of you. He also said insomnia isn’t a symptom of low cortisol, although I’ve read different.
Both my 9am bloods were around 200, which my GP said should be over 500. The endo said normal cortisol is 100-1000 at this time!
He reckoned I couldn’t physically give birth with Addison’s, I said I didn’t, I had to have 2 sections because I didn’t dilate despite full blown meds. Maybe I didn’t release the necessary hormone to dilate? Endo, made no response.
If the saliva shows odd cortisol/dhea, can I self medicate? I don’t mind paying but need to know I can do something about the problem if my gp won’t help.
I’ve got the list of endos thanks. I understood them to not be recommendations, more just a list, but at least if they know about thyroid that’s a start, the endo only seemed to know about diabetes!
He said the test should come through soon, although wouldn’t say weeks, months etc so who knows? I’m a bit weary having it as so many people say they felt dreadful after, and if it only confirms Addison’s and nothing else it could be a wast of time, but I guess I’ll have rules one thing out.
I fit the criteria as I’m female in 40’s, so like you say, in the right group. Sigh x
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