Hi everyone. I'm new here and would like to ask some advice please.
I'm a T3, Liothyronine patient and have been for almost 20 years.
I had been on adrenal support (prescription) for many years but came off it last year. I am now really suffering again with adrenal insufficiency.
The endo is sending me for a synathin test when that department opens again at my local hospital (following Lockdown) but in the mean time, I want to take a cortisol test as it is my belief - having suffered from this previously - is that I have low, or very low cortisol levels.
Please can anyone recommend a good testing kit or a good company in the UK where I can order one online?
Many thanks.
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ThePeacefulGardener
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Regenerus or Genova Diagnostics, both measure cortisol plus DHEA (which is needed, the DHEA tells us what stage of adrenal insufficiency). Other companies test cortisol only.
The NHS generally only tests cortisol using a blood test carried out between roughly 8am and 9am. (Cortisol has a circadian rhythm so timing is important.) I'm sure they could test DHEA if they wanted to but I've never heard of them actually doing it.
Patients actually often prefer to test cortisol in saliva (when they pay for testing themselves), and a standard test as listed by SeasideSusie above would include four samples produced throughout the day and a DHEA test done by testing one of the four saliva samples.
Testing cortisol in blood and cortisol in saliva is not actually testing the same thing. Sometimes the results of blood and saliva testing will agree but sometimes they don't.
Cortisol is carried around the bloodstream attached to a transport protein called Transcortin and some cortisol is carried around attached to albumin.
When testing cortisol in blood it measures the total of cortisol attached to Transcortin, attached to albumin, and unattached.
When testing cortisol in saliva it measures only cortisol which is unattached to transport proteins. Since cortisol is thought to be only immediately usable by the body when it is unattached it seems likely (to patients) that cortisol in saliva is the more useful way of measuring it. I'm guessing that doctors would disagree.
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If you want to know about the tests that an endocrinology department is likely to do in the UK then take a look at this link :
The info on the Short Synacthen Test (SST) can be found on pages 68 - 70. Make sure that you get ACTH tested as part of that test. A lot of endos don't bother and it means that they have too little information to diagnose some adrenal problems. See this link for the different types of adrenal insufficiency :
Thank you so much for taking the time (and energy) for forwarding all this inofrmation.
I had severe adrenal insufficuency many years ago and was treated privately, thanks to the support of my friends.
The NHS gave me a Synacthen test but not a ACTH, despite asking for it.
I will ask my endo for a cortisol blood test just becuase it may help move things forward. I will also send of for the saliva test and present those findings to my him.
He's a nice guy and does actually listen and so hopefully, there will be some sort of help available.
I've started taking Nutri Adrenal again but have just read online that if one has low cortisol, taking adrenal medication may not be helpful and only raw adrenal cortex should be taken - have you any views on this?
I would guess that adrenal medication would probably refer to hydrocortisone (a steroid) rather than adrenal supplements like nutri adrenal, but I can't be sure and I'm no expert.
If you don't have a proven need for hydrocortisone then it is possible that you could switch off any steroid-producing capability you may have left if you take hydrocortisone.
Another product you could look at which does a similar job to Nutri-Adrenal is Adrenavive (comes in three forms - I, II and III).
Thank you for the Adrenavive link - great to have an alternative. Have you used it?
My BP is and alsways has been on the low side and so am happy to take the liqorice.
I would not want to start on HC unless absolutely necessary. I'm hoping that being back on the Nutri Adrenal will be enough - I'm only two weeks in to taking it again and not surprisingly, have not felt any improvement yet.
Thank you for the Adrenavive link - great to have an alternative. Have you used it?
No, I've never used it. My cortisol is always high rather than low, and any form of adrenal supplement causes me problems. But Adrenavive has been mentioned on this forum many times and seems to be popular, so it would be worth searching for information on it.
Your Endo can order an early morning blood cortisol & DHEA although not all Endo's will do the DHEA. if you have adrenal insufficiency I'm surprised you have come off medication for it as it tends to be a life long condition where you need Hydrocortisone to live. Your base cortisol level will be tested when you have the synacthen test (SST) hopefully they will do an ACTH at the start of the test as well, this needs to go on ice straight away, it's important to get this done to see if the issues is a pituitary one rather than an adrenal one.
Yes, thank you so much for this. I very much want to see if this is related to my pituitary.
I was on the adrenal support for a long time and my endo was concerned that I was totally dependent on it - he asked me to slowly reduce it and come off of it. As I was well, I complied. Now, a year on, I am signed off work and in a sorry state and so deeply regret my decision.
Can you tell us exactly what you were taking? 'Adrenal Support' is such a vague term. You said: I've started taking Nutri Adrenal again. So, was it Nutri Adrenal you were taking before you stopped? Or were you taking HydroCortisone, as mentioned above? One is what we call a 'glandular', usually made from beef adrenals, I believe. HC is synthetic cortisol.
I don't think you can become dependant on a glandular. But, with HC, it depends how you took it as to whether you can eventually come off it or not. For adrenal fatigue, it should only be taken in the morning - never after 1 pm - just to give the adrenals a helping hand at their busiest time. When the adrenals are stronger, you should be able to wean yourself off it slowly, but not stop in one go. However, if you have something like Addison's, or a faulty pituitary, then you would need to take HC throughout the day, and take it for life.
However, if you take HC throughout the day when you have adrenal fatigue, you are likely to shut the adrenals down permanently, and not be able to come off it. There's a huge difference in the way these things are done. And I don't know if all endos are aware of this.
It was Nutri Adrenal and have taken adrenal supporting supplements and applied methods to managing the stress in my daily life. I have never been put on HC.
My endo, though sympathetic has only ever sent me for synacthen tests and then told me I didn't have Addisons. He did accept my reporting to him that I was well when on adrenal support. It was only last year, after many years on Nutri Adrenal, that he suggested that I come off of it.
I had the adrenal diagnoses via the Peatfield Clinic about 12 years ago.
My symptoms now are the worse they have ever been.
OK, well good to know that you haven't been taking HC.
The majority of doctors deny the existence of adrenal fatigue. They believe that you either have Addison's or there's nothing wrong with you. Most patients would beg to differ! But, that makes it all the more difficult to get any sort of treatment for it.
It was only last year, after many years on Nutri Adrenal, that he suggested that I come off of it.
Yes, well, that's typical endo! They do love to use their patients as guinea pigs. 'let's see what happens if...' with little concern for the patient's welfare. I think we're best of just ignoring them when they start talking like that. We know our bodies and we know what makes us feel better. They have little knowledge of anything and like to play around with us.
My TSH and Free T3 are all in good range.
What do you call 'a good range'? If you still feel bad, they probably aren't as good as all that. I would strongly suggest you post your results on here, with the ranges, and let people have a look. It really isn't going to help your adrenals if your FT3 is too low.
I didn't write the last results down in my diary - I just remember being quite happy with them though concerned about how unwell I was feeling. I had actually ended up in A & E and then been admitted to hospital because they thought my symptoms were due to having 'a reaction' to a new brand of T3.
I am speaking to the endo on Tuesday so I can get the last blood test results then as well as my latest (which I will have drawn tomorrow).
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