I had a second SST in June at the insistence of my endo, and have been meaning to post for comment.
My results were:-
8.55am 245 nmol/l
9.25am 592 nmol/l
(Adrenal insufficiency indicated by cortisol <440 30 mins post synacthen)
I am aware that my starting cortisol is fairly dire, although my GP/Endo seem unable to do anything as my results on an SST above are a pass. I take the usual vitamins and minerals to support my adrenals and hashimotos along with LDN. I also do all the other good stuff gluten free, yoga, not over exerting etc etc.
I do often feel drained in an afternoon, I can’t take a nap as I would like as I have the school run. If I take an adrenal cocktail - orange juice, potassium and salt, I instantly feel better.
I know I have an issue as generally can’t go out in an evening due to tiredness, but trying to get the NHS to help has been a waste of time. I also have chronic insomnia whereby I wake up at 2am for 3 hours, I’ve had this for 20 years. Lack of sleep is life threatening but my excellent GP said there’s nothing I can have to help with my postcode. At best it’s counselling, which I actually don’t think would help my physiological condition. I don’t even know who could help me even privately?
Any advice much appreciated.
Thank you.
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CornishChick
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SSTs only rule out primary AI, unless they take your ACTH at the same time. Your starting cortisol is indeed poor, your response is adequate to rule out primary adrenal insufficiency.
Based on all of that, you could be a good candidate for Paul Robinson’s CT3M.
Thank you. So if it rules out primary AI, what else could it be?
I have read Paul’s books, website and Facebook page. I did have a go at CT3M, but unfortunately when you have chronic insomnia, setting the alarm in the night is the last thing you want to do, knowing that if you are by chance asleep, you won’t get back off. Paul and others talk of taking their T3 in the night half asleep then going straight back off. Unfortunately it doesn’t work like that for me, and I just found it unworkable. I was gutted as I believed his concept and didn’t know how else to raise my cortisol.
Your low starting cortisol at 8.55 is more indicative of secondary - so the signal from your pituitary to your adrenals is possibly weak. I can’t say for certain without seeing your ACTH, but it’s a common pattern in chronic hypothyroidism.
Have you added T3 to your regime?
It sounds like you need to get on top of your insomnia (gosh what an annoying thing to say! I bet you’d love to!)before you can trial CT3M and indeed perhaps your cortisol could improve from better sleep too. At the risk of being patronizing or recommending something you have already tried (tell me if I’m overstepping) might I suggest the circadian rhythm method? It has transformed my and many others’ sleep. It’s very basic but a tad dull, and it takes a month of consistent effort at least. I have been doing a lot of deep reading into the suprachiasmatic nucleus, the pacemaker of the hypothalamus - so the body’s Big Ben ⏱️
Watch sunrise with bare eyes while eating a high protein breakfast (set an alarm for 10 mins before sunrise)
Get a filter for your screens - I used Iris Tech, it’s v cheap but you can use any.
Watch sunset, don’t eat after sunset. No exposure to artificial lights after sunset and wear blue light blocking glasses if you need to be around artificial lights after sundown. You can use candles 🕯️.
It has to be done consistently for a month, the first 10 days are a bit rough, especially in the mornings but the body will shift relatively quickly. There is a lot of fascinating information about it available, but you can kind of consider it like doing a very clean, particular diet but with light 💡 Insomnia should respond well to it, all other things being excluded and equal.
Thank you. With the ACTH, would this have been on the results? Should I ask the endos secretary if the ACTH was tested?
I have previously tried T3, although have always been top of range, so didn’t think I needed it. It didn’t make any difference no matter how I took it, so I gave up.
It’s interesting about the sleep advice, I will look into it. However, I’m not sure I actually have a problem with my circadian rhythm. My GP pointed out that melatonin should have helped if I had a circadian rhythm disorder, but it didn’t do a think!
No, ACTH would not necessarily have been included unless requested.
Having chronic insomnia is another way of saying you have a disrupted circadian rhythm, so it’s kind of a given that your circadian rhythm is out of whack. But the advice I suggested is derived from studying of the SCN, it’s not to “cure” circadian rhythm, but to support it so that signals are sent out to hormones systems at the right times in the right way etc. the impact of light is ENORMOUS and research is at the very beginning. Podcasts by neuroscientist Andrew Huberman goes into some more depth that may be of interest.
Incidentally, synthetic melatonin is no match for your own melatonin and it is not recommended you use it as it can suppress your own production, as with all these hormone secretion mechanisms they live in negative feedback loops so unless your pineal gland is damaged I would not supplement melatonin.
“The SCN also projects to the pineal gland, where the sleep-facilitating hormone melatonin is produced during the biological night, thereby modulating the diurnal variations between wakefulness and sleep”
The SCN mentioned above is the suprachiasmatic nucleus, which is the thing you are feeding with high quality light in form of sunrise/sunset (sunrise and sunset have particular rays with specific signals, ie. more or less blue light etc.) and avoidance of artificial lighting. If you feed that thing well, your pineal gland is happy and if the pineal gland is happy you secrete melatonin and if you secrete melatonin at the right time, you sleep at the right time 🛌
That sounds very interesting, thank you. I wonder why when I take melatonin (I’ve also tried slow release melatonin) I still don’t sleep?!
I may struggle with the sunset commitment as I have two young children to sort in an evening, but I will try anything where possible! Chronic insomnia for 20 years sucks!
Sorry you’ve struggle so long, that really sounds hard.
I’m not surprised melatonin supplementation hasn’t helped… falling and staying asleep is a much more integral and complex process than rising melatonin, I shouldn’t have described it above as so basic I was just trying to explain how the SCN is connected to all of this.
Maybe you can get your kids to watch the sunset with you… train them young 🙂
It’s a good idea! Unfortunately I’m generally ferrying them to clubs most evenings, so relaxing with a sunset it just a holiday treat! Might be possible some times of the year though.
Interestingly I can fall asleep within 5 minutes, I am always ready for bed. It’s just I only sleep 4 hours, then am awake until the alarm. I feel wide awake at 2am. I once described it as though I’ve been injected with adrenaline. My heart isn’t racing, but I feel like I would in the daytime, Wide awake! I currently mask symptoms with antihistamine, which helps massively, but I’d rather not take anything and have natural sleep.
That is a typical adrenal symptom, to wake around that time. Paul Robsinson hypothesizes that when we can’t secrete cortisol, we make adrenaline instead. You are supposed to start secreting cortisol around 3am, perhaps you are creating adrenaline instead.
I take steroids for my low cortisol, if my dose is too low I tend to wake around the same time as you and remain awake unless I take some hydrocortisone. Have you got any ACE? It might be interesting to experiment one off to see what happens if you take a high dose of ACE.
It might be interesting to get an adrenal saliva test and see what levels your cortisol are at 2am when you’re bolt awake. Have you taken your BBT to see what it is at that time? Or tried a snack in case it is low blood sugar (again indicative of adrenals) Do you just stay awake from 2am until sunrise?
Thank you. Yes I have read low cortisol at 2am means adrenaline release and I presume that takes 3 hours minimum to clear the system, because that’s how long I am awake for at least. I sometimes get back off, but often am awake until the alarm at 7am. I am currently masking symptoms with antihistamine, but would rather not take that for life with links to Alzheimer’s.
I haven’t tried Ace, but did try Adrenavive if that’s the same thing? If not, could you provide more information on it please and how it might help?
Were you prescribed steroids? I do think I need them but understand they’re only available from the nhs if you fail the SST. There’s no help for in between people like me?
I have done two saliva tests, results are on my posts. Generally it’s low cortisol in a morning, following the correct pattern, on the low side but in range. I haven’t done a 2am test as that isn’t specified on the test I did. How would I do that please?
Yes I have tried a protein snack at night and in the night and it makes no difference. Neither does immaculate sleep hygiene, hence why I’m convinced it’s physiological.
Yes, adrenevive is ACE. But did you try taking it at 2am when you wake? I’d experiment with a really big dose (600mg) of ACE and see if that made me go back to sleep.
Yes - I agree with you, it doesn’t sound anything but physiological. What do you mean by “immaculate sleep hygiene”? Like no screens after sunset, blackout blinds etc.?
I wouldn’t do protein snack, I’d do carby snack to see if it’s adrenal. Try some OJ through a straw?
You would do a 2am test by taking the first sample at 2am.
You want to avoid steroids if you can, as you have a good SST response it’s important to exhaust all other options first, but I agree with you that it looks like a low cortisol response. You could try experimenting with hydrocortisone cream. You can buy it over the counter, rub a big big dollop of it on your inner wrist when you wake, see if it helps you go back off. It doesn’t rule out cortisol being an issue if it doesn’t work, but it could rule it in if it does help (if that makes sense) and it’s a lower risk strategy than oral steroids, which is quite a different ball game.
I would also really really try the circadian rhythm work, I have primary adrenal insufficiency (my adrenals work much, much worse than yours) and I am on program similar to the one I describe above to try and get off steroids - it can be very powerful for adrenals. I personally know someone who weaned off steroids for adrenal insufficiency doing it, so if your adrenals are at the root as it sounds, it could really help you.
All I can say is I suffered adrenal issues for years and years ... trips to Dr Peatfield (RIP🥰) with my saliva tests showing a low level line all under range, never managing after 4pm so cooking dinner in the morning, arranging kids activities at weekends when husband could help, making excuses involving the kids to avoid going out socialising in the evenings, picking up every cold and virus, etc, etc ........... but after five years of optimised thyroid and sex hormones, adrenals kicked in and I now even get high cortisol levels with stress and have to manage them with Ashwagandha.
I agree with dfc there is a small chance of hypothalamic dysfunction if reaction to ACTH isn't tested. However, when there is no clinic reason such as adrenal antibodies or pituitary/hypthalamic dysfunction, adrenals have every chance of kicking back eventually when conditions are right. My poor sleep also improved with optimised hormones but this is a tricky one as we need sleep to repair the body and make hormones work well.
Thank you radd. It does all sound very familiar! Fortunately I don’t have the colds, illnesses etc. I felt I used to, but since I started LDN around 5 years ago, I go for years without even a sniffle!
Funnily enough, a private GP is currently trying to sort my sec hormones. I discovered my testosterone was at the very bottom of range. The nhs ‘hormone’ GP I saw wasn’t interested, so I had to pay to see a private specialist. She said although I don’t have menopausal symptoms at 49, she’d try to increase my testosterone with HRT. So I’ve been on that for around 3-4 months and my testosterone has doubled (it’s still dire).
My FT4 wasn’t too bad, but as I previously tried private T3, my TSH became suppressed, and now the hormone GP keeps trying to reduce my levothyroxine, even though my FT4 isn’t at present the best. I have stood my ground so far and won’t see her again.
May I ask which sex hormones you needed to balance and how you achieve that? I’m not sure what the others are or how I need to deal with them. I just knew my testosterone wasn’t right.
I forgot to ask also, I didn’t know about adrenal antibodies. I’ve got thyroid antibodies, but is there a blood test for adrenal antibodies too? I can’t believe I’ve never heard of that. Will the NHS test for them do you know please?
Cornish, sorry to butt in but you won’t have adrenal autoantibodies, your SST response is good and rules out Addison’s (like Hashimoto’s but for adrenals).
As dfc has already said your stm evidences your adrenals are capable of working well but just not able to make quite enough at present. This is a common occurrence on the forum.
I had to replace first the usual oestrogen & progesterone about five years ago and this year introduced a little bit of testosterone. I absolutely love my HRT which (together with T3) has reversed a low BMD and been a positive move in every respect. 😁
As you have struggled for so many years are you open minded enough to consider lesser known causes of hormone disrupters? For instance I recently did a mould test and levels came back very high in several different strains which I’m now addressing. If you see a functional practitioner there will be a whole host of possibilities to be eliminated.
That is interesting. Thank you. Were your testosterone levels still low after HRT? I don’t feel any different with HRT but I guess it’s early days. People told me I’d sleep well with progesterone, but it has made no difference.
My GP didn’t seem keen on prescribing testosterone, although the private doctor would.
What is BMD please?
Yes I would try anything and have looked at functional doctors but when I’ve had an initial discussion with some, they didn’t seem very up on thyroid/adrenal conditions. I guess if someone recommended someone (Devon/Cornwall PM) then I’d look into it again. I don’t have endless money as I currently feel unable to work, but I would try anything to get it sorted if I could.
I was diagnosed as oesteopenic aged 49 through years of inadequate thyroid hormones, gut issues, etc. That result absolutely horrified me but it is actually quite a common occurrence in long term badly managed hypo.
A little added T3, HRT, good diet, exercise ......... and three DEXA scans evidenced a consistent reversal and this year a CTX, B-crosslaps blood test evidenced continuing healthy bone resorption.
I am actually awaiting a Dexa scan, but only because my hormone GP said my suppressed TSh would’ve affected my bones. I said I’m sure it wouldn’t, why don’t you run a dexa scan if you’re worried? Maybe my poorly managed thyroid and gut issues won’t have helped.
May I ask if you get testosterone prescribed please? I guess that’s my next battle sigh!
Be careful with that game, as if your DEXA reveals low BMD it could fuel hormone-GP's mistaken beliefs!
There is no research or literature stating low TSH influences bone health. It is the amount of thyroid hormones that determines bone architecture, amongst other factors such as calcium, Vit D, collagen, etc.
Healthy bones require an optimal T4/T3 ratio so that old bone can be dissolved or resorbed and new bone can be produced to replace what was resorbed. When thyroid levels are too low, both bone resorption and production decrease can result in fragile brittle bones (osteoporosis, osteopenia). When thyroid hormones are too high, bone absorption exceeds bone production with a net loss of bone mass.
Perhaps you had better show him the above paragraph 😬.
My GP prescribes Testogel which is the mens version of testosterone replacement and I use just 1/8 of a sachet a day, although it generally lasts me two weeks as I'm paranoid about the hairy bum that TiggerMe often refers to 🤣. My endo wanted to prescribe me Androfeme which is the only testosterone replacement licensed for women but its very expensive and GP agreed to prescribe me the mens if endo oversaw treatment. The first labs I paid for and then GP agreed to run bloods.
just received bone scan results, spine good, hips just in osteopenia range 😕
Whether this is on the up or on the slide I don't know as I got it done to give me a starting point, NHS wanted to wait another 5 Years before testing 😕
My old functional practitioner has just recommended Bone Balance which contains to the collagen peptides (Fortibone) mentioned in this paper. (Btw, the paper also recommends 1 g/kg body weight daily protein as a prevention measure for osteoporosis 😉).
Specific Bioactive Collagen Peptides in Osteopenia and Osteoporosis: Long-Term Observation in Postmenopausal Women. ... ncbi.nlm.nih.gov/pmc/articl...
I had DEXA scans every 3 years at endo's suggestion but don't think I'm scheduled for further. To keep in touch with what bone health is doing private practices are now recommending the blood test I mentioned above but it is expensive, and not available on NHS unless you are medicating bone meds such as bisphosphonates. Another example of NHS ignoring preventative methods that would later save the massive costs of fracture patients taking up hospital beds?!
Thank you. I’m getting confused as above labs I thought you meant testosterone bloods. I thought it strange you had to pay first yourself. Which bloods do you mean are expensive please?
Sorry to confuse you. I was replying to Eeyore but because it is your post you also get notified.
The CTX, B-crosslaps blood test evidences continuing healthy bone resorption but is only available privately and expensive.
The first testosterone test I paid for myself through private endo but when GP took over the prescription he tested it on the NHS.
I am taking Bone Balance as another precaution against brittle bones. Whether you take it or not is your decision as it is not a cosmetic supplement but stipulates for medical purpose. I would wait until the results of your DEXA as you might not need it.
This sounds just the ticket Radd!... you are a bloomin wonder 🤗 I've been taking full spectrum amino acids hoping to cover all bases as yet to get my head around the various collagens 😵
Physical activity [4,5] and an adequate protein intake (1 g/kg body weight daily) [6] are basically recommended for osteoporosis prevention. In addition, a sufficient intake of calcium (>1,200 mg/day), vitamin D (800 IU) and vitamin B12 should be taken into consideration.
I now fortify my milk substitute with calcium citrate to make it a bit more 'milk' like... 😁 interesting they say >1200mg... higher than the usual recommendation
interesting previous post of yours Radd re testosterone.
I have also been prescribed Lenzetto and Utrogestan. May I ask how long before your testosterone started to increase after starting these, just wondering how long to give it before I approach my GP for testosterone?
Sorry to come back to this late, I am still raking over and re reading responses to try and understand it all.
You said …where there is no reason for pituitary/hypothalamic dysfunction…does passing a SST rule this out? I was just reading about hypopituitarism for example, and have a lot of those symptoms, but how do I rule that out?
I understand my SST ruled out Addisons only, so I need to get to the bottom of my low cortisol. There is no sign of my adrenals recovering on their own as I’ve done all the right things for years and still lack energy and feel wiped out at times. My cortisol at each blood test pre 9am is in fact reducing.
Once you pass a SST, what is the next step to investigating why your cortisol is low? Grey Goose said in another post about testing pituitary hormones. I looked on the Pituitary Foundation website, and don’t appear to have symptoms for any of the pituitary conditions except possibly hypopituitarism.
I’m just not sure what further tests to request to get to the bottom of my low cortisol. Thank you for your help, much appreciated.
I can’t remember, have you had ACTH confirmed as low? ACTH follows much the same circadian pattern of high early morning and tailing off throughout the day. When you had 9am blood cortisol labs taken, did they test ACTH levels also?
I agree with gg that if a pituitary problem is suspected, then pituitary hormones should be tested. The pituitary gland controls many others glands and even partial loss of function will result in other identifiable excesses or insufficiencies. Usual additional tests to ACTH would include prolactin, GH (growth hormone) and IGF-1 (insulin-like growth factor 1). Then if anything became evident you could then ask for for a scan to assess for a tumour suppressing ACTH production
Even in the early forum days comprehensive HPA axis testing that included an ACTH stim, possibly a CRH stim (hypothalamus) and then perhaps an ITT (Insulin Tolerance Test) seemed more common, but HPA axis general knowledge seems to have regressed. It is true whether the issue lies with the pituitary or hypothalamus the treatment is the same but it now appears once past the adrenal stem test, not much more more is done to access why ACTH should remain low.
Things are much further complicated because thyroid hormones influence cortisol and vice versa, and when we’ve been deficient in both for many years, signalling changes and new base lines may result. The pituitary hormones above as well as TSH can also effect thyroid hormones if out of synch. However, if there is no clinical reason found, these alterations can rectify as I've experienced myself.
Re your question below - Taking HRT when having a stim risks distorting the results and hopefully an experienced endo will have noted this and taken it into consideration when interpreting your results. HRT will increase the 'total' cortisol (not the 'free' which is the amount available for use) due to increased CBG (binding proteins), but may still result in an increased cortisol response to ACTH stim.
Thank you very much Radd. I haven’t seen any ACTH results, I have only been given the cortisol readings from my SST.
Can a GP test ACTH or does it have to be done with a SST?
I am about to have a blood test, so can ask about the pituitary hormones. Which ones specifically do you think I should request please?
I am so sorry, could you explain ‘Stim and stem above’ please as I don’t understand these.
My endo is useless and the nurse rang her just before my SST to double check as I was on HRT, she said to proceed, I don’t feel confident she’d have noted at the point I’m on HRT and there was no reference made to it in her interpretation letter afterwards. She hasn’t been helpful in the slightest, starting our initial conversation with “are you just here for T3?!”
I listed above the pituitary hormones that need testing - prolactin, GH (growth hormone) and IGF-1 (insulin-like growth factor 1).
Your GP can also organise an early morning cortisol and ACTH blood draw but now a days an endo referral seems to be made on low cortisol alone and once adrenals are proven to work with a stim, ACTH seems to be forgotten 🤷♀️. I think this because the criteria in the first instance is to eliminate Addisons or adrenal atrophy. However, the stim does not indicate function of the whole HPA axis and why having other pituitary hormones tested can be helpful.
As you said your 8.55am cortisol level of 245 nmol/l is dire. You could ask your endo why is your ACTH so low it is failing to stimulate enough cortisol for your well being. An ITT injection is good for diagnosing secondary adrenal insufficiency as will lower blood glucose levels inducing hypoglycemia which should trigger the pituitary to make more ACTH. Otherwise if ACTH results still aren’t clear, a CRH injection should also trigger the pituitary to make ACTH, and this helps identify if the problem is with the pituitary or the hypothalamus.
You should also have had aldosterone, renin, potassium and sodium levels tested by your GP. Has this been done? And errr, 'stem' is a typo for 'stim' - sorry 😬, aka SST, Short Synacthen Test, ACTH (synthetic) stimulation test, and probably other.
Should I be asking the endo for a CRH and ITT injection? I haven’t heard of these before. She seems to have washed her hands of me for passing the SST. My GP is very good and would probably do these if that’s possible?
I think I’ve had potassium and sodium tested in the past and are ok, but I will check. I am always thirsty if that’s a clue to anything, and drink a lot of water. Diabetes is ruled out.
radd I forgot to say that I was taking HRT when my SST was done. I did tell the endocrinologist as the Nhs website says to stop for 8 weeks before testing. It said they usually do the test 5 days after period starts. Told them it started 14 days ago. Test was done day 16.
Do you think this would’ve affected my results please?
Hello Cornishchick. I have wondered the same thing. I only had 1 week notice of my test so I removed my hrt patch immediately but I have no idea what impact, if any, this would have had on the test. I also don't have a regular cycle anymore, so no idea where I am!
Yes my endo didn’t even ask me, it’s only because I read it on the NHS website. Surely if they say stop HRT for 8 weeks, you stop it. She hasn’t commented on the results saying it’s interpreted based on HRT being taken, I’d be surprised if she even made a note of it!
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