First post so hello everyone! Short history of me, underactive thyroid since age 25 after RAI (overactive from age 19), my thyroid has been stable on Levo for years until I was diagnosed with severe Endometriosis and had 2 surgeries and hormonal treatments to try to control it. Since then I haven't been able to get my thyroid levels stable. I'm currently under an Endocrinologist because I'm also fighting a horrible chronic fatigue for the past two years with no identified cause and he's put me on Lio which isn't making a difference to my fatigue.
Consultant also tested morning Cortisol three times and each time came back low (a reading of 250 or lower), had a SST and I passed so Addison's was dismissed.
My question is about secondary/tertiary adrenal insufficieny because my consultant appears to have dismissed this completely since it wasn't Addison's - could it still be the case if I had normal SST? What's the best test for the other adrenal insufficiencies I should be pushing for?
Sorry for the long post or if this isn't the right place to ask, I'm a bit at my wits end that at 33 I can't get off the sofa sometimes due to just no energy levels and I desperately need an answer but I feel like my doctors are giving up.
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My question is about secondary/tertiary adrenal insufficieny because my consultant appears to have dismissed this completely since it wasn't Addison's - could it still be the case if I had normal SST?
Yes. There is a common problem with the SST - doctors don't do the whole test in order to save money. They often don't test ACTH which is required to diagnose secondary adrenal insufficiency. I'm not sure how tertiary adrenal insufficiency is tested.
This link tells you the difference between primary, secondary and tertiary hypocortisolism :
To fully analyse HPA axis function theoretically you would need an ACTH stim, possibly a CRH stim and then perhaps an ITT (Insulin Tolerance Test).
Except nowadays the thought is only the short stim is required in the first instance to eliminate adrenal dysfunction, as if cortisol rises post administration of synacthen the adrenal glands are capable of secretion. We used to think 420 nmol/L rise (I think) whether at 30 or 60 minutes was good but the expected rise is dependant upon the assay used in the lab doing the analysis.
If autoimmune Addisons has been eliminated and a pituitary problem is suspected, then more pituitary hormones should be tested to assess other pituitary hormone deficiencies and possibly the gland scanned for a tumour suppressing ACTH production. Because the pituitary gland controls many others glands, even partial loss of function will result in identifiable excesses or insufficiencies such as TSH in the case of central hypothyroidism.
In other words similar to the case of central hypothyroidism whether the cause of your adrenal insufficiency be a pituitary or hypothalamus problem it becomes irrelevant because the treatment is the same and that is to replace the missing hormones.
If your endo considers your cortisol rise adequate but you think the results ambiguous, you could ask for aldosterone and renin, potassium and sodium to be tested. Also a CT of the adrenal glands but if I was you I would firstly conduct a saliva stress test available privately to assess levels and circadian patterns of both cortisol and DHEA over 24 hours.
Morning blood serum tests should be between 350-550nmol/Ls so your 250nmol/L is low but common on this forum. My own low cortisol issues have rectified (to an extent) since thyroid hormones became optimised and other health issues were addressed.
Mine was taken at the end of afternoon clinic & was 192 nmol I’m almost passing out in the mornings and hypoglycaemia. I suspect I should ask for an ACTH test I feel awful .
If your blood cortisol was taken at the end of an afternoon clinic ask your GP for an 8-9am retest as per NICE guidelines which quotes:
1. The serum cortisol level should ideally be obtained at 8–9 am.
2. Random serum cortisol levels have a low sensitivity for Addison's disease because there is a diurnal variation in cortisol levels (highest in the early morning and lowest late in the evening.
I too have Graves Disease and am post RAI thyroid ablation in 2005.
I became very unwell around 8 years after RAI and after over 2 years of various O/P department appointments all I knew was that I had a low ferritin and got a lot of ' shrugged white coated shoulders " from the mainstream medics I met.
I did see an endocrinologist and had the Short Synacthen Test but this came back ok - though I clearly wasn't and then read the test is not sensitive enough for anything other than Addison's Disease.
I started my own research into Graves in around 2016 and purchased Elaine Moore's very first book - Graves Disease - A Practical Guide - and realised that it wasn't that my Graves had come back again but that it never went away in the first place as Graves is auto immune for which there is no cure,
All the RAI does is flip the patient from Hyper to Hypo which is considered more easily treated in primary care.
Elaine herself has Graves and had RAI treatment and finding no help with her continued ill health and symptoms started researching Graves for herself.
She is now a well respected authority on all things Graves with a World wide following and has several published books and a website - elaine-moore.com .
One side effect of RAI is that it is taken up, to a lesser extent by other glands and organs in the body and the adrenals are mentioned and I have been supplementing adrenal glandular for around 7 years now and do feel I'm am better able with these supplements than not.
Another book that helped me understand my situation better is written by a doctor who resigned his medical license. Barry Durrant-Peatfield writes to help patients advocate better for themselves and Your Thyroid and How To It Healthy is a relatively easy read about basic body physiology and how everything relates to each other and the cause and effect of not being optimally medicated.
I fell into this forum researching low ferritin in around 2016 and now come back on as my way of saying ' thank you ' to those who helped me.
It is a massive learning curve but you can come back from where you are stuck on the sofa - it just takes a bit of time and reading around the subject and initially it's likely all going over your head especially if you are dealing with that horrible brain fog.
Just go one step at a time and first and foremost we need to see a full thyroid panel to include a TSH, Free T3 and Free T4 inflammation, antibodies and ferritin, folate, B12 and vitamin D.
If your doctor is not able to help you can go into Thyroid UK - thyroiduk.org - who are the charity who support this forum where there is a list of private companies who can and some offer a nurse home visit to take the bloods which is the easiest option, but obviously at a slightly higher cost.
Arrange an early morning blood test appointment - fast overnight just taking in water and take your daily dose of T4 after the blood draw so we can see exactly what your body is holding on to.
T4 needs to be taken on an empty stomach with a full glass of water and you should wait an hour before eating or drinking anything.
If taking any supplements leave these off for around a week before the blood draw so we can see exactly what your body is holding on to.
Once with the results and ranges simply start a new post with all the information and you will be given considered opinion from forum members and your next best steps back to better health and well being.
I had very low cortisol and also past the synacthen test for Addisons. After lengthy waits, tests and finally going private I found out I am a very poor converter of levothyroxine T4 to the most important hormone T3. I’d suggest you get your T3 checked and if it’s low you could be converting poorly. As soon as I was privately prescribed T3 liothyronine medication it was like a miracle. I felt so much better. Full of energy. After a few weeks I had a series of blood tests. One of which was a 9am cortisol test. My level shot up from being under range to 450. Wow my GP was astounded. It now hovers around 250-300 which is normal. I needed T3 medication to boost my adrenals and basically everything in my body. Oh boy what a game changer. I now have my life back better than ever. I was convinced I had an adrenal issue but it wasn’t… it was lack of T3
Thank you. I honestly had no idea thyroid and Cortisol were linked! My consultant has put me on T3 and I've been on it for a month or so. It's possibly made a difference but not the noticeable effect you have had sadly. I haven't been on the higher dose of it (started off on the minimum 10mcg dose to see if I reacted to it) long enough to have a blood test though so might be I need to keep adjusting.
10mcg is quite a high starter dose of liothyronine. It is much stronger than levothyroxine. Do you split your dose. I split 5mcg then 8hrs later a further 5mcg. I get 20mcg size tablets and cut into quarters with a scalpel knife. If I took 10mcg in one go I’d go over medicated and feel unwell. If it goes too high next thing your TSH will suppress and then likely the Endo may stop prescribing on that basis. Slow and easy is the motto with T3 medication. You might end up needing more as the months roll on but that’ll only be determined by your blood results and your symptoms if any. Remember over medication can feel very similar to under medication. You need to keep a daily diary of how your feeling i would suggest initially.
That's interesting,.I'm now on 10mcg in the morning and 20mcg in the evening at the consultants request as I still had fluctuating levels on the 10 alone. As you say I am suspecting it might be too high now though as I've had racing heart and shakes a couple of times.
Thank you, unfortunately this Endo seems rather one size fits all with treatment and hasn't even actually asked for any follow-up bloods to check levels. I'm asking for them from my GP because I know how ill I'll be if I don't monitor them. I'm honestly not that confident in him as he's been wrong about other stuff too..
Hello, only just seen this post. A 24 hour saliva cortisol test will give you a good idea of your adrenal function. It's useful to know as the thyroid and andrenals work together, so if one isn't working properly, the other won't either. You'll have to do it privately though as most likely your GP won't.
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Q regarding cortisol levels - anyone else experience very low levels? Could it be Addison's disease? I know it's rare. 
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