Me again! My investigations continue and this is my most recent test to try to piece together what's going on. Any input most welcome please 🙏
Backstory since joining HU last November - Iron deficiency anaemia now corrected and ferritin getting close to optimal. All other vitamins are optimal. HRT optimised as far as I can tell. I have 'lean' PCOS and osteopenia plus the host of symptoms we are all familiar with. I'm investigating possible central hypo due to lowish normal TSH, T4 and T3, no signs of antibodies. Thyroid ultrasound showed no irregularities, just a few small cysts consistent with age.
It was suggested on here to seek a private endo appointment but it all costs so much money so I'm trying to see if I can get anywhere on the NHS first before I'm forced to part with serious cash going down the private route.
I've added the results of the saliva cortisol test in the comments so hopefully they are readable.
I approached my GP (a random GP at the practice) again about not feeling well before I decided to do the saliva cortisol test. This time not from the thyroid angle as I knew it would be dismissed with a normal TSH, instead because of my low blood pressure. I managed to persuade him into letting me have a 24h blood pressure monitor which showed low blood pressure during the day and very low blood pressure overnight - 70's/40's at night.
Then got a call back from another GP, one of the partner's, saying this was very unusual and definitely not ok and suggested potential Adrenal Insufficiency or a cardiac problem so to do a 9am blood cortisol test as a starting point. Results 316 (102-535). Awaiting a call to discuss but from what I've read this looks to be in the 'grey area' so not conclusive either way for AI.
I'd like to prepare for this call in case I have a fight. He did mention on his previous call that a possible referral to either endocrinology or cardiology was on the cards regardless of the cortisol result as he'd hardly ever seen anyone with such low blood pressure overnight - finally someone who seemed to be taking me seriously! However, the follow up call will be with my 'assigned GP' who already has me down as a hypochondriac and always tries to get me off the phone in a hurry, so I fear this will all be lumped in to my long standing fibro diagnosis and I will get nowhere.
I feel it's up to me to try to direct the call. If she listens, would it make sense to suggest following the endocrinology route rather than the cardiology route first? And if so, can I request (insist) who I want to be referred to if they are out of area? I've been doing my research and the local hospital endo is clearly a diabetes specialist so want to avoid her!
Is it even worth speaking to her about my saliva cortisol results considering they are still in the normal range or does the NHS dismiss these tests as 'woo woo' anyway? Sometimes feels like you anger them when presenting private test results.
Anything else anyone can think of to make sure I get the best out of this call?
P.S. TiggerMe This was CNSLabs - A while ago I promised you a review. Long story, messed up the first attempt so it's taken me rather longer! In case you have not already used them, do PM me and I can fill you in.
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I went down this rabbit hole yesterday. See this post, and the links in the replies from me towards the bottom. Touches on GreenTealSeal ’s similar mystery journey : )
Hi FIR, I was actually skim reading this post this morning! I'm going to take another look at it properly as I'm sure there will be something to help me in all the comments. I did notice that GTS's cortisol results look a little different to mine in that they have an upturn into high levels in the evening which I don't have. Mine just start low, stay low and finish low, but none are actually out of range. Also I don't take any thyroid meds. Mystery journey's indeed!
From my (foggy) memory reading yesterday- it feels familar to straight up adrenal insufficiency/ Addisons.
The acth or synacthen test thing - I think that’s your next step if you haven’t already. I think those are more targeted at insufficiently like you, vs GTS’s evening increase anyway.
And read up on aldosterone. Which I think then goes a step further into primary or secondary AI.
I know blood pressure came up through my reading. Your low BP I think is totally consistent with AI.
We know that “in range “ means little in thyroid tests… your cortisol arc is dragging the bottom all day.
Caveat : blind leading the blind, I still haven’t done my saliva cortisol test so am still in discovery phase : )
It is so puzzling! I read in your last post you're having a morning cortisol, will be interested to hear how you go with that. Fingers crossed you get somewhere.
If your blood pressure is low ask for a 24 ambulatory test to see what it does overnight. This is what revealed mine as it was always fine in the doctor surgery when of course I was feeling stressed! It would go up to 110/70 so the GP said it was normal but even he was surprised to see overnight I was getting readings of 71/43.
Thank you for this suggestion!Im due to go back in a couple weeks so will as about ambulatory test- the same used to happen with my BP at the doctors but since I went on thyroid meds it’s kinda just got stuck around 94/70 most of the time.
My bloods should be back soon-ish so I’ll let you know! It’s so confusing cos I find it near impossible to tolerate thyroid meds so I was convinced my cortisol would come back flatlining!
Fingers crossed for you too and hope you make some progress health wise!
Not at all 😊 this is how we all learn from each other and the conversations can throw up new ideas so are always useful to have regardless who started them. I have learnt so much from other peoples conversations and hopefully my own posts can prove useful reading at a later date for others too. Anyway, FallingInReverse brought you into this so we can blame her 😉
Not sure if you've seen this already? NICE guidelines on investigating AI.
However, I found a draft consultation about AI from March 2024 which I think looks due to come into force later in the year - The cut off for morning cortisol levels has fallen from 400 (December 2020 guidelines as per link above) to 300. See page 8.
Thanks for the links! I’d seen the first one which is what made me wonder about it due to my intolerance of thyroid meds!
The second link is super interesting though as it says you should be off estrogen for 6 weeks before testing. I’ve been on the combined contraceptive pill for over a decade and only stopped taking it less than 4 weeks ago and when I did my saliva cortisol test I’d only stopped it 2 weeks ago. So I do worry this will have skewed my results somewhat 😬
Weird that they are lowering the cut off too!? Almost seems like that would make it harder to get diagnosed surely!? (Or maybe I’m reading it wrong, my brain is mush this evening)
When I spoke with the nutritionist at CNS Labs she just advised I take the saliva test whilst not on the 2 week duration of the progesterone part of my HRT. Transdermal oestrogen was not a problem. I don't know if the combined pill would be different, you'd have to phone them. As for the morning blood cortisol, it sounds like there might be a possibility it could have affected it. I read somewhere about oral oestrogens raising cortisol levels due to cortisol binding globulin but to be honest as this didn't apply to transdermal oestrogen in HRT I didn't bother to take full notice.
It's hard not to be cynical about the lowering of the threshold level but maybe there is a genuine reason to prevent overdiagnosis and then over replacing someone's cortisol which may have the potential to cause harm. A cut-off number for any test is always going to result in some people getting the wrong diagnosis which is awful of course but maybe unavoidable. Medicine is not clear cut. What we have to hope for is an experienced clinician, that first carries out the test properly, can read between the lines, and make a judgment call based on symptoms and history as well as the blood work. Of course you could argue that lowering thresholds could be seen as a cost saving exercise and it's hard to not feel this is the reason when you get let down by the NHS.
I always find it a bit odd that you have to change from your normal regime for some of these tests, how is it an accurate reflection of the everyday you? Makes sense if it messes with the test obviously but you'd think when on HRT you are keeping things nice and balanced which ought to give a level start point 🤷♀️
Yes I know what you mean. I guess you don't want anything falsely changing levels that then look either better or worse on the results but that aren't actually reflecting what's happening in the body at a deeper level. For example the iron panel - it tells you different things depending on the timing of the test (fasted or not, time of day, supplements the week before, the day before, or just before the test) and it could look very out if you don't know what it is you're trying to measure under what circumstances. Ferritin changes slowly but the rest of the values measured are changing on an hourly basis.
HRT being balanced depends on how you're taking your progesterone part depending if you're peri or post menopause. If you are peri then you still have a cycle going on both with the HRT and your own natural one, whereas postmeno your levels should be pretty constant throughout the month for both oestrogen and progesterone.
Your results suggest that your adrenals are really struggling. Your low blood pressure results add weight to that idea.
I’m sharing a link to my saliva cortisol test results from 5 months ago which includes some helpful interpretations and comments (including from the particularly knowledgeable humanbean).
Have you requested a serum blood test from your GP? This seems like the next step if not.
I’m not in a position to comment on the likely response to these results by your GP, you can only hope that they’re having an open-minded and giving-of-a-monkey’s kind of day.
As for requesting an endo out of your immediate vicinity, I’m sure I saw an extremely helpful post on here relatively recently about patient choice. Found it!
Hi J972, thank you for the links, good to know you can choose who you are referred to. I have read through the post you shared about your own results, all very useful information. What have you done to try to improve your situation, adrenal cocktails or supplements, anything else?
To be honest I haven’t done anything specifically to address the low(ish) cortisol other than try to optimise my thyroid ‘meds’. I’ve tried adrenal cortex - Thorne - and am incredibly sensitive to it, even in tiny doses (I’d split a capsule). Which confuses me!
I occasionally indulge in an adrenal cocktail, but I’m not convinced they make any difference.
I’m absolutely a work in progress! I’m awaiting the results of Blue Horizon DNA test to see what, if anything, is occurring there.
Yes, tried the whole adrenal cocktails thing before, never made any difference to me. Adrenal cortex supplements somewhat scare me - how do you know what you're getting? Which bits (the cortex has several parts to it producing several hormones) in which quantities. You could be getting more of one and less of another in the way of hormones and that might be the wrong proportion for you. Just feels a bit hit and miss to me especially without proper guidance. Maybe I'm just being super cautious and over thinking it. Plus I'm vegan so the very idea doesn't sit too well neither! Good luck with the DNA test. We are all a work in progress, the main thing is we keep up the fight and keep muddling through! Hard work though.
Interesting! I got on and tested in February whilst I felt well and your results are very similar to mine, with my total cortisol at 25.... I've added in some pregnenolone to see if this will up my cortisol a bit
Hi TiggerMe, oh that's interesting, similar results yet you feel well. I know I may be barking up the wrong tree although I appreciate everyone is different on what levels of anything they feel good at. Curious to know why you'd bother to add pregnenolone if you feel well?
I had been using hydrocortisone alongside DHEA last year which increased my DHEA more than my cortisol so now I'm trying to rebalance my levels as they are out of wack like yours, so I'll stick with the DHEA which has been really beneficial and try pregnenolone to assist cortisol levels
I thought the 'well' feeling might be fleeting but I've actually continued to improve so I'll stick with this latest regime for 6 months and check things again as I'm hoping that supporting my adrenals will prevent a crash and tweak my cortisol slightly higher in range.
I've been doing Couch25K and have reached week 5 without any adverse effects 😁 I've not run for 4 years as it instantly triggered PEM so I'm thinking my fatigued adrenals are perking up
Wow, couch25k, something is working really well! Thanks for the explanation, totally makes sense and great you are willing to give things a go. I'm really pleased you are feeling better and it's great to get some insight on what has been working for you. What I want to know is how you decide on what to try, are you reading this in a particular book or asking people on here?
I think my DHEA may have come up due to starting HRT 9 months ago but guessing it's not having a good effect on cortisol. I did a saliva cortisol test in 2016 when things started to go downhill more and my cortisol was normal, mid range, but DHEA was starting to go down. 8 years later it seems to have reversed.
Trying to work out what to do next, hoping maybe my GP might be willing to entertain the idea that my cortisol is not in the best shape, we'll see...
I've read loads on here and various websites and then experimented!
I'm thinking your cortisol levels are on the slide as your low thyroid levels are putting a strain on your adrenals to hold you up and they are getting fatigued... have you investigated Metavive and Adrenavive?
Thanks TiggerMe. No I haven't investigated Metavive and Adrenavive - copied from my above reply to J972 'Adrenal cortex supplements somewhat scare me - how do you know what you're getting? Which bits (the cortex has several parts to it producing several hormones) in which quantities? You could be getting more of one and less of another in the way of hormones and that might be the wrong proportion for you. Just feels a bit hit and miss to me especially without proper guidance. Maybe I'm just being super cautious and over thinking it. Plus I'm vegan so the very idea doesn't sit too well neither!'
I will never try keto again! (vegan keto that is). It made me feel so ill, clearly I need carbs to function even at a reduced level. I have read a bit of Dr Myhills website but got a bit lost with all. I have already over the years seen 3 functional medicine providers, done lots of tests, tried all manner of supplements, lifestyle modifications, and diet tweaks. I also did a saliva cortisol test 8 years ago when I was already going downhill and that showed pretty normal levels. it was the Regenerus one though so hard to compare numbers but % through the range it looked much better than this one.
Yes, my total cortisol is only 25 compared to Bertie's at 23.7 🤷♀️
Today I have managed almost 2hours walking the dogs (whilst chatting) 20min jog and a 5 mile march around the village (flat 🙃) this afternoon and my recovery is good!!
I'm so envious of your energy TiggerMe ! 😍 Also very pleased you are clearly feeling a lot better than you used to. I did a 30 minute moderate walk today and went from feeling not brilliant to pretty rough after ☹️
HealthStarDust I guess this tells us that numbers (on test results) are not the full story. It's frustrating because of course we want to correlate symptoms with test results and justify that what we are feeling makes sense. Then there's also how the other systems in the body are functioning, and if they are doing well maybe they take up the slack when the others are not in the best of shape? 🤷 The mind boggles...
For me, it's quite possible my cortisol levels are perfectly normal and not the cause of my symptoms at all despite symptoms seeming to fit. It's all so difficult! Thankfully I have all the lovely people here willing to share their own experiences and help me work through all the possibilities, truly grateful 🙏
Yes, I’m beginning to think all tests are useless. However, what’s tricky is I assume people without deficiencies of any kind would still feel some kind of boost if using certain hormones etc. Think of all those sports athelists that had no deficiencies but benefited from all sorts of boosters!
So, I’m not not sure diagnosis is key either. If it helps, and it’s not dangerous, stick with it. I say this, but somehow since being on this forum (and the fact that I am trying to be more mindful in the hope of becoming pregnant when the body is right to try) makes it difficult for me to take my own advise.
Official diagnosis gives validation, but, that validation only really means something if you receive treatment that works and makes you feel better. Maybe those 'boosters' are placebo...or maybe the likes of you and me can't get hold of whatever they are 😁
I’m not sure it would give me validation as too often diagnoses are also wrong. But, if leads to treatment and that works, then there’s all the validation I’ll need.
It's taken a year of being on the right T3/4 dose to build up to this stage so I don't think there is any instant fix just keep listening to your body and try to optimise everything, I'm not convinced about many tests but a few have given me pointers into what needs attention but non are really conclusive and we all have different sweet spots 😵
Your cortisol results look really low to me, and I think you need to be tested for Addison's Disease or some other form of hypocortisolism aka adrenal insufficiency.
There was a member of this forum who was diagnosed with Addison's Disease and you can see her saliva results in this thread :
The following link is useful - see pages 68 - 70 to see how a Short Synacthen Test ought to be carried out. The NHS often saves money by omitting the ACTH test. When that happens doctors can't diagnose Secondary or Tertiary Adrenal Insufficiency if the patient has it.
Do you think they are that bad? I went to them with similar levels and got an SST without ACTH so a bit pointless and have treated myself ever since 🤷♀️
These are only from 6 weeks ago and I’ve added pregnenolone rather than hydrocortisone so I’ll give it 6 months minimum, still feeling good since January 🤷♂️
Ah right, silly endo! Shows how the T3 made a difference to your cortisol. The main thing is to feel well (despite what tests say)and it looks like all your experimentation has paid off 😍 Thank you for taking the time to reply, relaying your story helps and I'm grateful to all the people like you who have been replying to my various posts over the last few months, it's a great support and I've learnt so much! 😊
Thanks humanbean for doing the calculations, really helpful to see this. Ultimately they still fall within the 'normal' range, so doesn't scream Addisons. Just like my thyroid levels don't show hypo but neither are looking optimal. I would very much like pituitary function to be looked at but I guess it's up to the GP now to decide if I qualify for a referral. I am now armed with more information, thank you 😊
It is quite hard to compare the Regenerus and CNS results but the first two I had with Regenerus I went from Stage 1 HPA Adrenal gland dysfunction to evolving Stage 2 and the latest CNS states normal optimal HPA Axis with good stress reaction throughout!🤷♀️
Hello TiggerMe. Sorry to jump on this post but I've been following the conversation today. Which of the two tests (Regenerus or CNS) did you find best. I've done Regenerus but want to do another in a few months to monitor change.
The CNS seems more comprehensive with 5 cortisol samples and DHEA for am and pm... also with the 10% THYROIDUK discount it comes in at just under £100 rather than Regenerus now at £120!!
I don't remember seeing the cns one last summer when I did mine, but wishing I had now as that sounds better value for money. Does DHEA usually vary through the day?
Also TiggerMe for your SST, were you off HRT for 6 weeks prior? Just read on pages 68 of the endo bible - 'HRT or any oestrogen should be discontinued for 6 weeks before the test.' I had wondered if this meant only oral oestrogen but in other tests listed it specifically mentions transdermal is fine and it does not say the same for the SST.
So your local NHS guidance was not following the same guidance in the endo bible from Imperial College - I wonder why the difference...
I think I remember reading another member, who went privately, was told to come off transdermal before their SST. I wish they all followed the same procedure!
Thank you for all the links humanbean, very interesting. The member you linked to had a very low morning cortisol of 45 (150-600), mine is up at 316 so nowhere near the zone that would say obvious Addisons to a GP. Nevertheless, it's also not in the optimal zone (I think above 400) so maybe this will be enough to at least get and SST. I think as a minimum they will recognise my blood pressure overnight is pretty bad and needs some form of investigation.
The endo bible is so useful, thank you for sending this. I now understand how important the ACTH test is, I didn't know how it fitted in the picture but it's much clearer now that a baseline must be taken to fully understand what the cortisol result means. I see how easy it is for it to be omitted (carelessly or on purpose??) as it's not that clear in the endo bible that it needs to be done. If I can get the SST then I now know to insist on this, so thank you for educating me! 🙏
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