apologies if this isn’t very coherent. I just got the results of a saliva test and it says stage 3 adrenal insufficiency. My dhea has dropped to 44. This is all much worse than a year ago, sorry I don’t have the numbers to hand. Might post tomorrow when not feeling so terrible.
my question is, I’ve been reading that levo and t3 contra indicated with low adrenal function. But then I’ve been reading that t3 can help the adrenal’s because they don’t have to compensate for the low t3 anymore.
basically I feel terrible and a bit scared and I’m nervous of taking my thyroid replacement. I’ve ordered some liquorice tincture. Sounds a bit pathetic?
What to do.
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Pearlteapot
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Sorry to hear this, but don't worry - there's always something to be done, and you'll get there one way or another. Do post results when you can because it's helpful to see. I'd wager you're not really converting T4 to T3 well? Are you on T4 only?
Your cortisol really sounds like it's struggling. I have similar - also stage 3 pattern and extremely low levels. I started hydrocortisone on my own before adding in T3 because there was no way I was going to tolerate it, and I've had to very carefully raise it alongside the cortisone, still early days. I'm not saying you would need do the same, but your adrenals need some kind of support.
How old are you? Your DHEA is very low, and based on that, it would be worth seeking an endocrinology referral to get a short synacthen test and test for adrenal antibodies, which can rule out Addison's just as a precaution.
Licorice root alone won't do it for very low cortisol - it's really only helpful for mild lows, or just the morning, for example. Adrenal cortex is usually the first port of call - starting low and building up until you feel benefit, and can end up on as much as 700mg. I'm only doing hydrocortisone because cortex didn't work for me, but others have great success with it. Dr Peatfield's book has some good guidance on supporting cortisol.
You're right that it's a cycle - taking T3 can help with cortisol, but only past a certain point. In the early days, the aim is to get enough cortisol circulating in your system to be able to a) let your adrenals rest and recover and b) get your thyroid levels up and stable, and then you can gradually ease off the adrenal support. It's a bit of a long game, but once you start getting the right help for cortisol, things really will start to feel better. You absolutely need to keep treating your thyroid though, because as you say, being hypo stresses out the adrenals more.
Sorry lots of information, but hope some of it's reassuring!
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
:Hugs: doesn't sound pathetic at all. Based on my cortisol test a few weeks ago my pattern is Phase 2 (evolving) although my DHEA is within range. It's like a perfect storm, you don't know what to do for the best and it seems even harder to figure out than Thyroid issues, plus the lack of cortisol makes it hard to think clearly and plan your way out of it. But like seveneleven said, everything is figure-outable.
I am far from an expert and you already have some good advice but my two penn'orth based purely on my own experience, advice from other members, and reading as much as my poor addled head can take in:
1. Start taking daily average temperatures. rt3-adrenals.org/Testing/te... (mine varied by around 0.5 deg C a month ago, before treating, now 0.033 & this reflects how I feel. It's really handy having this measure especially as I don't think you can do a meaningful saliva test while taking ACE or HC)
2. Big doses of Vitamin C helped a lot with my brain fog - I take 2g per day in my water, which I try to remember to drink through a straw to help protect my teeth. This is advised by Dr. Peatfield and Dr. Myhill; you should take it to the tolerance of your stomach though as it can cause upsets
3. Before going down the ACE/HC route, you could look into Paul Robinson's circadian T3 method, if you are already taking some T3. I think opinions on the forum are mixed about this but it seems to be working pretty well for me; I found out about it after starting ACE so am now weaning off the ACE. I just take my first dose of NDT when I wake up anyway, around 3:30. He has 3 books describing this method, and some info on his website e.g. paulrobinsonthyroid.com/the.... One of the books is available through Thyroid UK
I'd be interested to know what others think of this strategy as I still feel like I'm clutching at straws but I am feeling a lot better already, hope that gives you some hope.
Great advice! Daily average temperatures are so helpful to gauge things, and vit C is a must. Would just add though that CT3M (circadian T3) isn't necessarily suitable for very low cortisol across the board - can be great if you only have low morning cortisol or mildly-moderately low across the day (like phase 1 or 2), but it can seem to make people quite unwell who have more seriously low levels and just trigger huge adrenaline releases. Once there are no real cortisol reserves (i.e. phase 3), the adrenals will struggle to support T3 raises beyond a very low level because ramping up the metabolism with T3 demands at least some cortisol, so some kind of ACE or HC is needed to help get things stable. I'd think the method could maybe work really well down the line for someone once levels are stabilised and ready to wean off adrenal support - it seems like it could help keep things in check. Certainly something I'll be thinking about, but I'm probably a while off from that!
I thank you all for your comments. Perhaps predictably, I've been short of energy.
This morning I went to my GP to ask for short synchathen test. I didn't expect him to be interested in the saliva cortisol measurements but I thought he might respond to the very low DHEA. Nope. He asked me to do another 9am blood cortisol test, which would have been 10.15 but the time I got to the hospital for the draw. I suggested that would be useless so we agreed I'll go tomorrow morning instead.
Exhausted already. Getting help, fighting for help.
I recently started to see a functional doctor who responded to my afternoon slumps by increasing my T3 from 20mcg to 30mcg. I was on 125 mcg Levo and 30 Lio. I now think that was a mistake. My slumps were more likely low cortisol and the increase of Lio just increased the burden on the adrenals. I have unilaterally reduced back to 20mcg. I know this lack of consistency is bad but I see it as a choice between the lesser of two evils.
My functional doctor may now prescribe adrenal glandular. I have been watching a Peter Attia video about adrenals where he warns against taking glandulars that have live hormone in them, i.e. cortocoid (pretty sure I have mis-spelled that) as it breaks the feedback loop so that you stop natural production (as with HC).
The product made by Nutri used to say 'hormone free' but none of the others that I have looked at make such a claim. Is this something to be concerned about? Sounds plausible. Yet on the other hand I don't understand how, if it lacks the hormone, it actually does any supportive work?
Usual old muddle, terrified of taking something that actually makes my position even worse by closing down another endocrine feedback loop.
Just want someone knowledgeable and trustworthy to look after me. Feel caught between snake oil and indifference.
You're doing all the right things. I'm not surprised you felt worse on a T3 increase - those adrenals are likely not ready for it. The cortisol blood test is a good start - try to allow yourself plenty of time and relax as much as possible, because stress can obviously give a bit of a false high.
The fear around adrenal glandulars that sometimes gets whipped up is unfounded - it's not going to shut down your own production completely and kill off your own feedback loop forever (and neither does hydrocortisone, by the way). And in any case, your own feedback loop (HPA axis) isn't working on its own at the moment anyway - it needs help and a rest to start functioning again. I think you could say they all have some degree of 'live hormone', but in very small amounts that are natural to the cortex extract, and it's not the same as taking cortisone itself. Beyond that, I think it's just getting into the minutiae of food and drug standards/labelling and what people are allowed to sell as supplements. (Remember that you should only ever take cortex, not the whole gland, which has adrenaline).
The effects of ACE/HC are temporary - you take physiological doses, nothing even close to pharmacological/therapeutic doses that might be used to treat an infection. The aversion to it among medics and some wellness circles is founded on the risks of those pharmacological doses of steroids. And glandulars aren't as potent as taking the 'pure' cortisone, hence why they're usually the first port of call before turning to HC.
'Temporary' might be a few months or a year, but once you taper off gradually, your own system learns to take over again. And really, there isn't an alternative way to get things working again, so please don't be worried about taking adrenal support. It's a necessary thing to help you get to where you need to be, just like taking anything else. What would make your situation worse is continuing on thyroid meds without any cortisol support. I was worried at the start as well, like you, and decided to just try it because I couldn't continue as I was. I'm a couple of months into HC, and I'm steadily increasing my T3 and starting to sleep better and not crash into a heap every afternoon. I also know people who are recovering really well on ACE. Just keep going x
😘 Encouraging. I'll think about this this afternoon. Oh for sleep!!
I had a thought. I generally feel pretty good in the mornings until about 3pm. So my very low early morning level looked odd. The test says you MUST do the early morning sample within 30 mins of waking. I wake at 5, so I dutifully did it at 5.30. But chances are that I wake so early because of adrenalin and my cortisol is not yet up. So perhaps my early reading is from too early.
I doubt that would distort my very low DHEA though?
I'm thinking of re-testing, in case a bad test is setting hares running.
I really wouldn't spend money re-testing. At a push, you could get some false highs if you had a really stressful day or loads of coffee, for example, but you can't get false lows. I'd say, if you did the test within 30 minutes, then it's accurate - the time of morning isn't important, and that's why they say 30 minutes from waking rather than a specific time, unlike the others, because your cortisol is supposed to be highest then. And yep, if you're wide awake at 5 and sleeping badly generally, that would point to adrenaline, which is getting pumped out to try and make up for the lack of cortisol, so it can even give you a false sense of energy - you're either 'on' and a bit wired but tired, or you're crashed out. When you say you feel good in the mornings, do you mean just not terrible/falling asleep? What happens after around 3pm?
Maybe try uploading a screenshot of the results graph? That might help to see what you're dealing with.
I have tried numerous times to upload my chart but the system won't accept it as it says it discloses personal info, even though it doesn't, I've laid some paper over my details to conceal. Will have another go later.
In the mornings I usually feel really good, I go for a walk or a swim and feel alert but not too wired. Unless I haven't slept , which is frequently the case, in which case I feel rubbish.
I'm quite diligent about sleep hygiene, I have a magnesium bath, I take 300mcg of mag glycinate, sometimes melatonin but the adrenalin seems to sweep it all away
Hm that's strange...usually it's fine with a cropped screenshot. Forum gremlins at work again!
It sounds like your cortisol situation is evolving, especially since it's quite a change from last year. The pattern tends to be that over more time, the window of preserved energy and feeling good gets smaller, and the feeling of fatigue creeps over the day. So your body is doing its best to give you enough petrol in the tank for the morning, but the reserves are running very low. At this stage, as well as looking into cortisol supports like ACE, it would be good to try and keep things 'gentle', so nice easy walks and swims but not going hard (doesn't sound like you're doing that, but our usual tendency is to push through!).
I know the feeling with sleep - you can have the best sleep hygiene in the world, but if you don't have enough cortisol, and adrenaline is picking up the slack, sleep will be a problem. It's only since taking a larger dose of HC before bed recently that my sleep is settling down. Have spent years taking an hour or two to fall asleep and then up 4 or 5 times a night.
here is my chart. I spoke to my functional doctor today, she calmed me. We are having a meeting about it on Thursday. I’ll let you know what we decide
I say ‘my functional doctor’ but this is a brand new experience. Hopefully a good one. Certainly feels nice not using up my small energy reserves this evening getting cross eyed trying to understand medical papers when I’m not a medic.
Ah, that's good they were reassuring. And your levels are very low in the morning and borderline later, but they're by no means disastrous - not at all. The DHEA is adrenals asking for help now because it's getting more difficult, and you really want your morning cortisol to be near the top of the optimal range, so it's good to be getting on it now. I really think you'd benefit from adrenal cortex, maybe not even that much, to help pick things back up again, and you may well find you can then get your T3 up more easily, and then they start to support each other. Sure the functional doc will take you through all that. You're not doing it on your own, so take a breath, and just go one step at a time.
By luck the results of my Dutch sex hormone test had been returned. It confirmed low dhea, all sex hormones very very low, it seems my hrt patch is not doing much if anything.
She is going to prescribe estrogel. She already started me on progesterone . And DHEA and an adrenal glandular, I don’t know which one yet.
Strange that this collapse in adrenal function and sex hormones correlated with a year of thyroid replacement therapy ( I started in march 2022).
I can’t but wonder if being under dosed for all of 2022 contributed. I never had health or energy problems before thyroxine. I was well up until February 2022 until very suddenly I wasn’t and had a blood test with tsh 71 and was put on 50mcg levo, gradually getting to 125 by the end of 2022 when I finally got a prescription for t3. It was a terrible year of half life, quarter life of intense fatigue hair falling out etc My hair didn’t fall out before
If I had my time again I would have taken other steps to improve thyroid function before levo.
Yes sadly being undermedicated for thyroid puts a lot of strain on adrenal system. At least you have a clearer picture now. What were your cortisol results like on the test?
The Dutch test I did was sex hormones only not adrenal as I had just done the regenerus saliva test. On the Dutch my dhea-s was 19.
My gp sent me for a 9am blood cortisol which came back at 323 which is pretty good. He sent that together with my DHEA of 46 to an endocrinologist who not surprisingly said my cortisol is fine. He also said the low DHEA is irrelevant. I’m surprised by that. If the adrenals produce DHEA then doesn’t that suggest poor adrenal function?
And how can there be such a disparity between blood cortisol and saliva cortisol? I know one is bound and one is free but why is so much bound and so little free?
Conventional doctors and functional doctors approach biochemistry completely differently. It’s mind blowing. Not just a difference of degree.
Yes of course, sorry - was getting mixed up! That blood cortisol is alright but still on the low end of the range, and all sorts of things can artificially raise that, even just the minor stress of going to an appointment an having blood drawn. But certainly not dire, which is good. Saliva is a more useful indicator of your functional cortisol. DHEA certainly isn't irrelevant, but they might be basing that judgement on the fact that it declines with age. Even so, yours is low, and does reflect a struggling HPA axis, but perhaps wouldn't look as bad in someone much younger with similar cortisol. But there are so many variables. Not surprising endo ignored - they'll only pay attention if blood cortisol is well below range, because they generally only recognise Addison's disease as valid. Glad you're getting some kind of support - be sure to record how you feel and vitals (temperature, HR, and blood pressure) on the adrenal cortex and DHEA. And make sure the doc is only giving cortex, not the whole gland, which has adrenaline.
I actually asked about the cortex and adrenaline issue and she said the adrenaline marginal and not something to be concerned about. I also looked into which products are cortex only and couldn’t find one with that claim except nutri which is discontinued. Do you know of a brand that is cortex only?
Hm, well among people with experience of taking them, and the consensus I've seen among functional docs, is that the whole gland is not recommended with very low cortisol, only cortex. If you're running on low cortisol, your adrenaline is already likely higher than it should be, so it doesn't take much to stimulate it. There's no benefit to taking the whole gland in this case when you're wanting to just support cortisol, and there's no issue with availability of cortex. In terms of brands, Adrenavive is the main one in the UK, and Adrenavive II is the cortex only, I think in 150mg caps. The other is Nutricology adrenal cortex, equally fine but may be a little harder to source. Some people prefer one or the other, so it's a matter of sticking with one for a while and then changing if you find it really doesn't suit you. There's also Thorne, but it's very expensive because it's only small bottles of 50mg caps.
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