I’ve been pondering lately about how unfortunate it is that there’s no adrenals-specific forum on Healthunlocked.
Cortisol problems are so commonplace (amongst those with undiagnosed and/or under treated thyroid conditions anyway) yet there isn’t a commensurate cohort of super-knowledgeable members to offer insight.
We can’t all rely upon poor ol’ humanbean to interpret our results and make suggestions every time one of us spits into coloured vials!
So my question is, does anyone know of a patient-to-patient forum where there’s support for those with a suspected adrenal problem? Preferably not Facebook (….I can dream).
Or is STTM our only option?
Thanks, as ever x
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J972
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I for one would like more info on Cortisols. I'm 58 levo meds good, over menopause but seriously starting to hurt! Joints painful, puffy face, hands! so painful to bend my fingers. Not sleeping 5 hours max and so blinking tired all the time!!
Oh my, I'm of the same age & going through exact same problems as yourself!.... My levels are 'normal' but am also gaining weight & not feeling as good as I know I should be, so much joint pain... On 75 levo.. Massive problem also getting specific Brands each month!!!!.... Really do wonder where to go next as my GP is not giving me help as everything is apparently ok. Beginning to think I'm possibly not converting my T4 but not sure as T3 levels are not checked as standard & do wonder if Cortisol issue is involved . Quite frustrating.
I would suggest that you get yourself a private blood test to check both FT4 and FT3 if GP unwilling. You might be undermedicated. Also important to have core vitamins and minerals optimised - B12, vitamin D, folate, ferritin.
Thankyou for your reply, Yes I think I am going to have to go down the private test route to get some answers. Life becomes a little bit miserable for us All when we lose a bit of control with our bodies. Hope you get some answers to your problems too. Big Thankyou 🌻
If you get a blood cortisol test done, make sure to do it at 9am. It's not rocket science to estimate a range that the level might have been at 9am if the test was done at 10am, but some GPs (including mine) reject any cortisol test not done at 9am. Lazy, ignorant, dangerous, I can think of many words to describe such a rejection when the level shown is 1/10th of the bottom of the reference range. Still fuming about my life being put at risk by the delay caused as a result - I didn't get any hydrocortisone to address the diagnosed adrenal insufficiency for another 4 or 5 days after that...
I don't know the accuracy of saliva-based cortisol tests, but having the day curve information can be useful as something to compare against when re-testing in future.
The ability to get same brand medications of any type is becoming ridiculously difficult. I feel your pain.
As has already been said, privately test your thyroid hormone levels. It's also not just cortisol that becomes an issue. After menopause a type of estrogen (estriol? Estrodial? Could be another type, there was a video I found on it recently, I'll try and dig it up and link it) is produced by the adrenals. You can imagine then the possible problems with adrenals which are already under strain compensating for a flagging thyroid.
So you may want to look into options like bioidentical hormone supplementation at some point also (assuming you aren't already in which case ignore!)
Thankyou so much, I'm so glad I'm not the only one having difficulties with gaining medication, it is a complete nightmare each month. I even had the pharmacy tech at my doctors rant at me face to face in front of other patients about how she's had enough of trying to help sort my prescription for brands & is no longer willing to help! I left in tears & fuming. A def stress not needed on top of life's other stresses we All have nowadays!
If you do have the link that would be great 👍.... Good wishes to All fellow sufferers & we will keep striving to get sorted 🌻
That's really terrible I'm so sorry you've been treated like that!! That's disgusting.
I remember going to one pharmacy for some Teva levo, hardly black gold, and the technician openly did a big eye roll, went in the back and started giggling with the other technician. Obviously thinking I'm a massive drama queen. The irony being Teva is causing reactions for me now, but not a single pharmacy had any supply of the brand I really wanted to try.
Same technician handed me a totally different brand which if I had not opened the paper bag during the walk to the bus stop, I wouldn't have noticed untill I got all the way home. I prompted returned, and she a bit shamefacedly announced she only had Teva 50mcg not 100mcg, so rather than tell me that she didn't have the brand I needed in the dose required, had felt I my request for TEVA was just silly preference and she had the right to decide for me that the other brand would suit!!!
I was so angry but too tired after waiting 45 mins for the prescript. It was totally patronising.
So sorry to you too, Doesn't it make you feel so fed up each month!.... I am so desp to keep with my brands as I ended up in hosp for a week after a bad reaction to Accord.... There is legislation to say how important it is to keep on the same Brand as it's Hormone meds but no Pharmacy seems to recognise this any more, I swear when I walk in they all hide as no one wants the hassle!!!!!..... It's good to talk to someone who truly understands these problems, Thankyou 🌈
I too had a really bad reaction to Accord. I yellow carded. I think they may have changed something in the formulation, because I'm sure I had it a couple of times a few years ago with no issues! And everywhere I go they have tons of the stuff!
Thanks for reminding me that during cancer treatment a node was discovered on my adrenal gland. I would like to know whether this affects me in any way but what with other medical issues to sort out and long waits for appointments, it never gets addressed. I'm wondering whether any others have experience of this.
Yes, I suspect some of my problems have been adrenal related too. But it's really hard to find extensive and reliable information (e. g. books) about this side of things.
Very true! Especially since even doctors acknowleding the existence of adrenal fatigue disagree which should be treated first, the thyroid or the adrenal glands. Some say T3 will heal the adrenals, others that the body cannot handle T3 without treating the adrenals first. Very confusing.
Even amongst endocrinologists, knowledge of adrenal insufficiency (the thing that the NHS recognises) is spread very thin (far more so than knowledge of thyroid issues, which TBH is bad enough), so knowledge of adrenal conditions short of adrenal insufficiency is going to be nigh-on non-existent amongst doctors. I have a formal diagnosis of adrenal insufficiency, believed to be tertiary - caused by the steroids in my asthma inhaler. However, the hospital where I ended up in emergency care said that their endocrinology team have never seen a case caused by an asthma inhaler before, even though that's what they reckon caused it. Doesn't inspire confidence when not one member of their team has seen a case before. I don't know if it's just primary AI numbers or primary+secondary+tertiary, but the figure I hear is that there are less than 9000 patients across the UK, which means roughly 1-1.5 patients per GP practice. As a result, GPs are unlikely to know much about AI either (mine doesn't) - many individual GPs will never see a case. It's scary, but my dentist seems to know more about AI than either my GP or my endo (dental visits can be involved for AI patients, so dentists have to know about it). The problem with patient-patient info about adrenals is that messing with the body's cortisol levels inappropriately is life-threatening much more quickly than messing with thyroid levels. I have to carry emergency syringes, needles and vials with me at all times, and those around me have to know how to administer them (unfortunately, A&E departments are often clueless about handling adrenal crisis, so patients are advised to inject themselves even if in an A&E waiting room). I believe my current endo's knowledge about AI is dangerously poor and he's supposed to be trained in the subject. I am about to switch to an endo who actually knows what he is talking about. Given how poor endo knowledge can be, I would be very wary of any suggestions from random people online about how to manage adrenal issues, particularly if they start suggesting natural supplements instead of hydrocortisone tablets. I'm sure others will disagree, but they likely won't be people living from one tablet to the next, with injections in their pocket at all times.
Not so much a dental problem, but medicating in readiness for the dentistry and the dentist being ready for potential adrenal crisis. A typical hydrocortisone regime for AI is three doses per day, 10mg, 5mg and 5mg. But on any day when the sufferer is sick or very stressed, "sick day rules" apply and the doses get doubled. Depending on what is being done at the dentist, the dose may need to be increased for that too. For a standard visit, I don't bother. If I know there will be drilling involved, I will increase my dose beforehand. Issues arise when the dentist wants to do something that you're not expecting. Basically, for anybody with adrenal insufficiency, we have to use hydrocortisone to replace the cortisol that a healthy adrenal system would generate in any given situation. Dental work is something that the adrenals would normally kick in for. The dentist too needs to be aware of the risk of the patient going into adrenal crisis. I always have emergency syringes, needles and vials with me. If I were going into crisis at the dentist, I may not be able to do the injection myself, so the dentist would have to, then call 999 and ensure that somebody gets saline into me quickly. Adrenal insufficiency is really not a nice thing to have. I've got various other health issues, and have had one illness that I thought at the time might finish me off, but AI is by far the scariest, and it's the only one that has resulted in me getting counselling
That makes perfect sense, thanks. I’ve heard about ‘sick day rules’.
Interesting that it’s thought that your AI was caused by asthma pumps, my youngest uses inhalers for her very mild asthma (she was diagnosed as a toddler, she’s now 15) and we’re working with the asthma nurse to try and wean her off. Osteoporosis is another potential problem associated with long term asthma inhaler use.
Osteoporosis or osteopenia are very common amongst AI sufferers and long-term steroid users.
Weaning off asthma inhalers is a tricky decision. I have done it, for the time being at least, as my asthma is also mild, and, for me, attempting to reverse the AI is the higher priority. Once it is reversed or found not to be reversible, I may go back onto a different asthma inhaler. Unfortunately, reversing AI is only possible in tertiary AI, and even then often does not work. It's also unpleasant and potentially life-threatening to do, so requires far better endo support than I currently have (I am shocked at how bad the current endo team is at AI stuff).
If your youngest needs to be on a preventer inhaler, it may be worth looking at ones using different steroids (or one without steroids at all). It's a balance between effectiveness for controlling asthma vs. potency on the endocrine system - the "relative glucocorticoid receptor binding affinity". I haven't got a link to the source right now, but Professor Emma Baker produced a presentation titled "Is there a safe and effective way to wean patients off long-term corticosteroids?" that contains a table showing the potency of common steroids from most to least. If you Google that, you might find it. Part way down the table, Seretide has a higher affinity than Fostair, which has a higher affinity than Alvesco. Of course, different people find different inhalers work better or worse for them, so it's not always just a case of choosing the one furthest down the table.
One thing I would add, is that whilst your youngest is on a steroid-based inhaler, I would suggest having her cortisol level monitored at least once per year, more often if you can. I am astonished that mine was never checked whilst on a potent steroid-based inhaler until I became so ill that I got a private blood panel done (MediChecks Ultimate Performance). Had I not done that, I almost certainly would have gone into adrenal crisis (I was very close to it) and possibly not survived 2023. That MediChecks test probably saved my life, although even then my close-minded GP wouldn't accept the result and insisted on repeating the test. Also, if your youngest doesn't have a Steroid Card, ask the asthma nurse if she should have one. For the asthma inhaler that I was on, I should have had one, but hadn't been given one, nor even told they existed. I only found out when the AI had kicked in
Good grief, that’s awful. Thank god we have the option to self-test in this country.
Thanks for the advice, too.
Take care.
Edit: just checked out the medichecks test, it’s really comprehensive! Although it seems like a lot of money to spend at once, there’s a good chance it’d cost more to get tests done for each of those biomarkers separately. Obviously in your case it was money extremely well spent!
I was very interested to read your reply here. I’m waiting for an SST. My cortisol levels are quite low. I’m drinking loads and peeing a lot as a result. I have other symptoms too
It’s sad to read how poor endos are at treating AI. It’s worrying as well. All endos should be thoroughly trained in this, even if it is very rare.
Where is your new endo based? I don’t have a huge amount of faith in mine.
Yes often comments about this are kind of throwaway remarks, without real why’s and wherefores. I have had as much (if not more) trouble with this, as with my thyroid medication. I end up overstimulated and cross and deflated.
radd is excellent but it seems a shame she is always bothered with these questions. Even Durrant-Peatfield seems skimpy on info to me. Unless of course I just can’t take it in. Would not be surprised at that.
Very simple explanation with the different approaches to try would be extremely useful.
There are a few groups available for adrenals, but specifically focused on Addison's.
Adrenal fatigue being non-fatal (though it can absolutely degrade your quality of life) is not given medical prominence - if accepted as a concept at all.
Some reading I've done from naturopathic sources has suggested it is a problem with the pituitary/pituitary signalling and not in fact the adrenals at all. Now I'm also hearing about adrenal pcos as a concept!
Then you get into pituitary, adrenal axis. I struggle to understand it all to be honest.
This precisely how I see it. It’s another area of trying to sort out the wheat from the chaff. I read a whole book about ‘glands’ adrenals etc when I suddenly realised it did not once mention thyroid. I realised reading it too that I had bought it years ago and ditched it. So I ditched it again! Money wasted.
Adrenal PCOS, what??? Tell me more please 😊 I have PCOS, and recently learnt I have the 'lean' type as I don't have problems controlling my weight. Now I'm wondering...
I had no real idea what it was! I heard people mention it on a thyroid related instagram account I follow.
It is a recognised condition: here's a bit from Google:
Adrenal PCOS is a specific subtype of PCOS that is influenced by the adrenal glands. In this condition, the adrenal glands, located on top of the kidneys, produce excessive amounts of androgens, primarily DHEA-S and testosterone.
Polycystic ovary syndrome, or PCOS, may affect up to 20 percent of all women, although an estimated 70 percent of women with PCOS may be undiagnosed (1). Most individuals with PCOS present with a primary cause of insulin resistance. However, a smaller group of women go undiagnosed likely because they present with a lesser known cause referred to as adrenal PCOS.
You have two adrenal glands that sit on top of each kidney and produce stress hormones, like cortisol and adrenaline, and sex hormones like DHEA and testosterone. Stress, whether emotional or physical, causes your adrenal glands to release more cortisol, which inadvertently also increases DHEA-S levels. DHEA-S is an androgen, like testosterone, but is only produced by the adrenal glands. Between 20 to 30 percent of patients with PCOS have high DHEA-S levels (2). Cortisol and DHEA-S disrupt the balance of other hormones in your body that lead to PCOS symptoms like irregular periods, acne, and unwanted hair growth or hair loss.
Most women with PCOS have a root cause of insulin resistance and high testosterone levels. However, DHEA-S is often the only androgen found to be elevated on bloodwork in women with PCOS with an adrenal gland root cause.
Thanks for that 😊 OK, not sure this is really me then. I was diagnosed with a high testosterone level when I was 16 plus wacky LH and FSH - never had insulin resistance which is, I presume, why I have not become overweight at any point. I don't currently have high DHEA either, maybe I did when I was younger but was never measured. Now in perimenopause and my testosterone is normal (beginning to get a few chin hairs though ☹️). I have low normal cortisol. I'm not sure I fit any of the PCOS profiles, I'm more confused than ever! 🤣 Do you have adrenal PCOS?
Not that I know of. Saliva cortisol tests taken in the last few years show consistently very low levels of DHEA. I'm thinking of supplementing once I have an idea of what I'm doing.
But I had chin hair (and they are growing more rapidly now😢) along with severe hair loss in my early twenties though my periods were consistent, but heavy so not pcos.
So maybe I was producing too much hormone at one stage and had elevated testosterone and now my glands are just burnt out and can't produce sufficient hormones anymore. Who knows? Women's hormones do not get the attention they deserve in the healthcare system so I doubt I'll ever find out.
☹️ oh, that's tough, sorry you've struggled so much. That's sort of what I wondered - the glands are worked too hard and eventually don't respond so well. So your DHEA is low but cortisol ok? Indeed not enough care for women's health in general.
My cortisol results show low morning and late afternoon results. I also have an over-reactive immune system, with chronic urticaria so I think the cortisol issues could also be due to that. Apparently allergic/autoimmune reactions result in constant cortisol surges and depletion in output of adrenal hormones. It's possible even the hashi antibodies could be playing a part.
I need to win the lottery so I can afford to deal with it all systematically!
That's really interesting. I have low white blood cells. GP not interested as never low enough to trigger proper investigation. I also had a viral panel which showed high active cellular activity to EBV and Cytomegalovirus plus over range IgM which seems to indicate an autoimmune reaction. I have wondered if I've been in a state of immune system overactivation for a long time. I'm sorry you have to put up with chronic urticaria, that must be really uncomfortable to deal with all the time 😞
Yes, a lottery win, that's exactly what I keep wishing for! Then we could work through all the different interlinked bits instead of chopping and changing and stabbing in the dark. If I ever get a big win, I'll pass some your way 😊
If you have chin hair with low DHEA levels, you likely have high levels of other androgens and/or hair follicles more sensitive to androgens. Be aware supplemented DHEA can switch to the other androgens increasing masculine traits. It is also (ridiculously) a Class C controlled drug in UK.
Thank you very much Radd! The last thing I want is more hair in the wrong places and other masculine traits, no thanks😭 What to do instead then? Is Pregnenolone a better idea? But I hear it doesn't always go where you want it to....
A lot of hypos have a faulty hpt axis from what I've read, I'm convinced my thyroid issues are to do with my pituitary being damaged after a massive postpartum haemhorrage. My health has never been right since. If the pituitary isnt working properly with regard to the thyroid then its probably not working properly elsewhere either.
If the pituitary isnt working properly with regard to the thyroid then its probably not working properly elsewhere either.
That makes sense.
I have read some people have good results taking a pituitary glandular supplement. I'm too cautious about possible BSE to take the pituitary, or hypothalamus glandulars that and the possibility of it making the pituitary 'lazy'.
Yes I like PaulRobinson explanations but after having had so much trouble trying to take T3 I am paralysed with fear. Trying everything else at the moment as methodically as I can. However ‘usual’ problem is noting the correct observations. I always end up frustrated because I find I have not noted the useful stuff! His instructions on taking T3 in the night to avoid heart stuff remains in my back pocket.
I find I did the same thing with my journal in the past. On top of which I wasn’t very clear about things and so when I looked back I found I couldn’t understand what I was on about
Methodical now, noting how I was at bed time, noting what time I wake as well as pulse and temp, any changes in brand of supplements, quantity, what time and on and on
I look forward to the day when I can just wake and get on with my day
Oh dear I echo your last sentence. I can think of loads of things I could be doing/want to do but I feel tethered to all this stuff. A medic who knew what they were doing would be helpful. I could leave the job to them. I am thoroughly cheesed off doing their job for them. It’s like being on an eternal treadmill of ‘sorting things out’!
I am definitely better writing it all down at bedtime looking over the day. Morning waking is for overnight brief notes. Only tried pulse etc when attempting T3 but now understand this should be done whilst tending to adrenals.
I think there is not an ‘adrenals’ forum because the reasons for the dysfunctions are so varied and never attributed to one thing (except when antibodies are present but thats a separate issue). In this forum even when thyroid hormones, iron and nutrients, gut infections and other ailments have been addressed, many find themselves still feeling unwell and this is because having taken years to get into this poor adrenal functioning condition, it takes years to recover even when the body is given best opportunity.
There is without doubt an adrenal fatigue condition (or HPA axis dysfunction - call it whatever) where through poor signalling we make enough hormones to escape medical diagnosis (leaving medics scratching their heads when a stim test evidences adrenals capacity to function), but still we can not make enough hormones to recover/retain wellbeing.
I previously suffered poor adrenal function and my first acknowledgement of the condition was through a book called Adrenal Fatigue in the 21st C which became my bible for many years. Then as the internet has opened up information, I have read and listened to others and make own assessment of what is credible or snake oil.
I now know there are clinical signs yet to be officially recognised such as collective labs evidencing imbalanced electrolytes, renal issues, low cortisol, DHEA and aldosterone levels, low BP together with constant thirst and extensive exhaustion, etc, In fact all the signs used in an official diagnosis of adrenal insufficiency (without antibodies) but all on a slightly lesser scale, sadly not enough to diagnose or get help.
And the treatment is varied because of the different levels of adrenal insufficiency. Some require oral corticosteroids replacements for life or a few months to rest the adrenals, some just improved lifestyle choices and learning to manage stress levels, some just to replace years of missing thyroid hormones. I wasn't offered adrenal hormone replacements and didn't have the knowledge of todays forum members, and my own adrenals hormones that were all under range for many years took about 7 years to fully recover labs after thyroid hormone and other deficiencies were addressed.
I have found great advice in Isabella Wentz’s book The Root Cause and YouTube vids such as the likes of Dr Eric Berg (who isn’t a doctor in the medical sense and sells supplements 😳 but) who explains adrenal fatigue/HPA dysfunction very clearly.
I like the enthusiasm of Eric Balcavage and he has some interesting guests on his podcasts, and anything by Datis Kharrizian is usually worth reading. It really is about taking a holistic approach in not only the researching but the application of remedies. And you know you could always start an HU ‘adrenals’ forum yourself 😬.
radd your reply is really helpful and timely for me too, thank you! J972 and I have been talking about my recent cortisol results only yesterday, thanks for making this post J972 🤗
You’re welcome, I’m just grateful for all the contributions! It’s clearly a compelling subject with a dearth of accessible info and guidance, certainly when compared with thyroid stuff. I think (know!) we’ve been spoiled by the fantastic support we get on here 😊
Had to look up 'dearth', thanks for highlighting a new word for me 😁 Whether I remember it or not, or use it in the correct context, is another matter🤣
WOW that is a huge pile of information. Thank you again radd. Datis Kharrizian I find I particularly dislike as all that stuff seems to add up to consulting and creating acolytes. I will check Wentz again but I have similar difficulty with her too. It’s a certain business model I find suspect. Been there done that. Got T-shirts.
radd, 'And you know you could always start an HU ‘adrenals’ forum yourself 😬.'
I don't think just anyone can start an HU forum. HU communities have to be backed/supported by some sort of recognised organisation or charity. That's why we are attached to Thyroid UK charity.
Thank you, radd, for this thoughtful response, there’s so much info for me to work through. And I agree with what you say about how adrenal problems can be caused by a range of things, making a forum an extremely difficult undertaking. I’ll check out those recommendations.
I actually found STTM was also lacking in adrenal info. I work with Dr Elizabeth Bright virtually. You may notice I had posted and mentioned adrenal info and no one acknowledged that being why my daily temps are still off although they are getting more consistent since then. Dr Broda Barnes talks a lot about this in his book and I track my daily temps to assess cortisol regulation. I took a salivary cortisol test months ago which is what I was basing my adrenal cortex extract dosing off of. It IS helping. I JUST retested my salivary cortisol (4xs per day) and sent them off to the lab. I am happy to share the test results from last time and this time with everyone once I get these ones back. I keep one graph where I log my basal temp, my NDT dose and my ACE dose each day so it’s obvious to see what is and isn’t working.
I think I just shut down when approaching this problem. Sorry I missed your contribution. And thanks for coming back to it. I will check out the references again. I liked Broda Barnes but Bright I don’t know yet,
Thanks for your response, I’ve not come across Dr Bright before but I’ll certainly be seeking out her work now.
You appear to be taking a very systematic approach to managing your thyroid and cortisol issues, that’s probably something I need to get better at. Do you mind if I ask what NDT and ACE you’re using? I’m always intrigued to hear about what others are finding helpful.
I’d be interested to see what your latest saliva cortisol test shows, please do share it.
I will definitely post once I have my recent diurnal cortisol results. I have access to both Thyroid-S and ERFA for NDT. I buy Thyroid-S privately and the ERFA is a prescription that I essentially fill to stockpile because I never want to not have access to NDT and/or be able to help out people locally to me who can’t get a script. My script is for 90mg and I take 120mg so it wouldn’t be enough anyways. I don’t find a difference with the brands personally. For ACE I use Nutricology. They come in 100mg capsules. I take 1000mg upon rising, 700mg at noon, 300mg at 3pm and 100mg at 6pm. One bottle is about $70 CAD and only lasts me 5 days. So I’m switching to Klare Labs that comes from the US (I typically get people to bring supplements home for me when they go to the US). The Klare labs is 250mg capsules and the bottle has more capsules plus is cheaper so overall significantly cheaper per day. I’m hoping it works as well.
For anyone reading this and wondering about their own (low) cortisol levels… symptoms include fatigue at certain points in the day, breathing or skin issues and a normal FT3 number but not feeling optimal.
Taking a basal temp (before you eat or drink anything, before talking, and while laying in bed) you use a glass thermometer under your left armpit and hold it there for 10 mins. If you chart your temp, it should be fairly consistent (day to day temps should not change by more than about 0.1°C for good cortisol) and temps of 36.4°C - 36.6°C for proper thyroid function.
I’ve considered it. But I tend to have to do things outside of a doctor or a script. I have an MD now (only since about November) and he will only test TSH. So I pay a naturopath for private bloodwork. I also pay Dr Bright for private consulting but she can’t write me requisitions for bloodwork because she’s in Italy and I’m in Canada. As a midwife I’m able to order my own salivary cortisol (and other urine and salivary hormone tests, but not bloodwork for myself). Because I have a script from my MD for 90mg ERFA, he wants to test TSH again before I go back. He gave me 3 months plus one refill, so if I go back again to get another refill and ask for hydrocortisone script, I will have to come off NDT for 2 or 3 days in order to get bloodwork done with a TSH level that he likes to warrant the NDT refill as well as request the hydrocortisone script. If you know of how to get the hydrocortisone outside of a script, I’d love to know. ACE is my way of treating that.
Yes! It’s such a struggle and my heart breaks for those who don’t even know how to navigate it at all. It’s so unfair. I wish I could say that healthcare is rigged just in the area of thyroid, but I know it’s like this in so many other areas.
For ACE I use Nutricology. They come in 100mg capsules. I take 1000mg upon rising, 700mg at noon, 300mg at 3pm and 100mg at 6pm. One bottle is about $70 CAD and only lasts me 5 days.
Upon first reading this I thought you’d made an error - 1000 instead of 100 - then I read on. That’s equivalent to £40! No wonder you’re sourcing something cheaper. I hope it’s as effective.
I’ve personally experimented with Thorne ACE but I feel very jittery upon taking it, even splitting a 50mg capsule. Any tips? I tested my cortisol levels in November using a 4-point saliva test and my levels were sub optimal throughout the day and slightly elevated at night. Which equates with how I feel: I feel less zombie-like after around 8pm. DHEA below range (66).
….symptoms include fatigue at certain points in the day, breathing or skin issues and a normal FT3 number but not feeling optimal. the day, breathing or skin issues and a normal FT3 number but not feeling optimal.
What kind of breathing issues? Shortness of breath, air hunger? And what skin issues are you referring to? Hyperpigmentation, melasma? I think I have that, mostly on my face, legs and forearms. I say ‘think’ because it’s difficult to be sure they’re not part of the ageing process (I’m 51).
Isn’t the cost insane? Sourcing things in Canada is a total nightmare too. I have people bring this back for me from the US when I can coordinate it, and even the NDT I buy can’t ship to Canada so I ship it to the US and then pay for someone to ship it from there to me or get a friend to bring it back when that works out.
Do you have your salivary cortisol test results? I’d love to look at them. I had my first salivary cortisol test done in 2014 and my cortisol was high. Back then I had different symptoms but still believe I was hypothyroid but misdiagnosed. I had another salivary cortisol test done in June 2023 and it showed low cortisol though my slope was still good. Highest in the morning and lowest at night, just all levels were 1/3 of where they should be.
What kind of breathing issues? Shortness of breath, air hunger?
I believe air hunger is low iron, not cortisol. Breathing issues like asthma/bronchitis are connected to low-cortisol. I don’t typically have asthma but I live on a farm and they spray pesticides around me and last May is got so bad I ended up in hospital because I couldn’t breathe. My mother is also hypo and has terrible asthma and bronchitis.
And what skin issues are you referring to? Hyperpigmentation, melasma?
No. When adrenal function and cortisol is low you can get hives/rashes and irritation, eczema and psoriasis. I get itchy rashes from the cold. Like nothing will touch me but if I’m outside and feel cold I can get a raised rash that’s so itchy all over my arms and legs.
Thanks for the reply, I don’t have the skin issues you mention. You’re right about low ferritin and air hunger, mine’s been historically extremely low but I’ve been supplementing. I’m due to check my levels via a home iron panel, but, my first one failed and I’ve been too ill with a chesty cough to risk doing the replacement.
I’d be grateful if you could cast your eyes over my cortisol results, here’s the link to my post:
I subsequently asked a GP for a serum blood test which happened back in December and it was 381 nmol/L where >350 ‘makes adrenal insufficiency unlikely’
How frustrating that Canada is so tricky in certain respects. Do you at least have access to home finger prick tests so you can monitor your own thyroid and other levels?
Hi CountryMidwife thanks for all the interesting info, lots for me to follow up on too 😊 I'm just in the process of working through all this adrenal stuff, alongside the thyroid, and only the other day posted my saliva cortisol results. As you so kindly offered to look at J972's results, would you mind also taking a look at mine too please? J972 was also kind enough to comment on my post so hoping she won't mind me jumping in! 🤭
I last did a saliva cortisol test in 2016, all levels were normal, in fact looked quite good. I was already having some problems (tired but wired), hence the test, but this was the start of things getting worse. Now my saliva cortisol levels look a lot different, much lower but still in range. My blood cortisol result was reasonable enough but awaiting a call from the GP to discuss.
Was just looking for the NICE guidelines for adrenal insufficiency (which is all the NHS is going to recognise - adrenal *fatigue* won’t be) and there’s new guidance due out in August this year. Reading through the draft guidelines, it says that anyone on *oral* oestrogen replacement should be advised to switch to transdermal for 6 weeks prior to a serum cortisol test because it can falsely elevate the results. I didn’t know this.
It struck me as peculiar that there’s a distinction made between oral and transdermal forms of oestrogen replacement (I use transdermal) so I went digging. I found this research paper which suggests that women receiving oestrogen topically had serum cortisol levels consistent with women receiving no oestrogen replacement. Those on oral replacement has elevated cortisol. pubmed.ncbi.nlm.nih.gov/174....
The study was small and the authors cautiously draw the conclusion that topically applied oestrogen has no negative impact on cortisol levels.
Does anybody have any other insight or knowledge about this?
Yes, I saw this and posted the new draft guidelines in my reply to another member GreenTealSeal (tagging as she may also find your post useful and may have not seen it yet). She commented on my saliva results and I believe we discussed oral oestrogens. It has something to do with cortisol binding globulin. I won't pretend to understand. Plus, as I'm also on transdermal HRT I didn't feel it applied to me personally.
I did notice they will be dropping the threshold level for referral for blood cortisol from 400ish (current) to 300. See page 8. Then read page 34/35 for the rationale and how they arrived at this.
What stuck out to me was this sentence - "There was limited evidence for this review question because of small numbers of study participants and diversity between studies, so the committee used their clinical knowledge and experience to make the recommendations."
Hi Bertiepuss, sorry for the delayed response! Your cortisol levels are too low! The blood test for cortisol is not a sufficient test for analyzing cortisol because it takes only one sample at one point in the day. You’re right that the sample didn’t give enough information. Also, your waking time is an important time to look at cortisol levels, so after you’ve been up for a couple hours and get to a lab at 9am you would expect it to fall somewhere in a range. I’m glad you also had the salivary levels done! The curve or daily rhythm is good, meaning you aren’t having peaks or lows out of sync with how it should be BUT you are low across the board. Your cortisol should peak in the early hours of the morning to wake you up feeling rested and energized, and then slowly decrease throughout the day, their lowest at bedtime. Your first sample should be in the top 80% of the range and it’s at the bottom. The midday should be 50% of range and it’s at the bottom. Your evening should be 30% of the range and it’s at the bottom. The bedtime should be at the bottom and I think you’re about there. I take bovine adrenal cortex extract capsules in decreasing dosages upon waking, noon, 3pm and 6pm. I track my NDT, ACE dosages as well as my temp all on one chart which helps me see if I’m still hypo (by temps being in or outside of optimal range) and how cortisol levels are by the consistency of the temps from day to day. For example if my cortisol is good but I’m under medicated on NDT, my temps will all be under 36.4° but with little variation from day to day. If cortisol is good and NDT is optimal, I will see consistent temps all in 36.4°-36.6° range day to day.
Thank you for looking at this CountryMidwife , much appreciated😊 Interesting about the body temps. I did record them a couple of months ago but possibly not arcuately as I took them mid morning before and after eating my breakfast - I was just experimenting to see what happened after a meal. They varied between 36.5 to 37.1.
A few months ago I did take morning (still in bed) temps they were 36.5-36.8. I have never seen any really low temperatures that those who are hypothyroid report. If anything my temperature tends to run an average of 36.7 to 37.0 making me wonder if hypothyroid is not the main issue here and in fact it's adrenals that need attention first despite both having some overlapping symptoms and low in range thyroid hormones. I'm not taking any thyroid meds.
I don't know where to start with supplementing - what, how much, and in what order. Do you have a recommended resource for information I can follow please? I think you mentioned Broda Barnes and Dr. Bright?
This thread from another forum [Phoenix Rising] has some useful info that is relevant to cortisol. The author of the thread copied the info from a book by Datis Karrhazian :
Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A revolutionary breakthrough in understanding Hashimoto’s disease and hypothyroidism
The same author also wrote this book :
Why Isn't My Brain Working?: A revolutionary understanding of brain decline and effective strategies to recover your brain’s health
It really is proving popular - which is testament to the widespread nature of the problem I guess. Thanks everyone, there’s some really useful information, experience and links throughout the thread 🙏
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