So it's recently been bought to my attention that my struggles to tolerate any t4 t3 medication could be down to low cortisol or adrenal issues, is this common?
I'm starting to question if adrenal issues are actually my main problem?
I was diagnosed 'subclinical hypo' last year and have been on varying doses of t4 t3. the higher the does the worse my symptoms become (but levo does help constipation,dry skin, fatigue).
I initially went to the GP last year because I was experiencing debilitating 'flare ups' consisting of suddenly going completely pale/grey,weak, dizzy, unsteady on my feet. I go semi conscious and feel faint, my breathing is often shallow and rapid. I often feel sick and my mouth and tongue go dry and it affects my speech. I'm not fully aware of what's going on around me, become confused and don't have much memory of what has happened when these flare ups come on severely.
It can be quite frightening, there are times when people wanted to call an ambulance but I'm always adamant i don't need one as i know it will improve after a few hours/overnight/following morning or at worst a few days.
They happen on and off thyroxine but are much worse and occur more frequently on it. I also notice on thyroid meds my appetite completely disappears and i become insanely thirsty all the time...which doesn't seem normal? I constantly crave a bit of orange juice mixed with water 24 hours a day (can't stomach orange juice by itself) I often feel sick when eating and get full very quickly. I weirdly often crave veggies covered in salt and crisps.
I'm no expert but I'm wondering if i have adrenal issues?
I read that severe worsening of symptoms when starting thyroxine should be investigated...but no one has.
I have always felt like my flare ups were not typical of hypothyroidism and that my TSH jumps up with these flares and then calms down once the worst of it has passed (these changes occur offer a couple weeks usually).
I am starting to worry a little that I may have something like adrenal insufficiency...suppose I'm just curious if others have any knowledge or experience of this please? Is it worth getting adrenals checked by GP?
Thanks so much,
GTS
Note: i have been tested over and over for diabetes and always negative.
I have consistently been working on optimising vitamins since last year and this has sadly made no difference.
my blood pressure is always low, especially on thyroid meds.
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A blood cortisol test is easy for a gp to agree to so I would just ask for it anyway for peace of mind. Get it done then you can rule it out. You'll always be wondering otherwise.It needs to be done 1st thing in the morning- not sure what time so check.
But I would also do a saliva cortisol test too as when blood cortisol is normal saliva can show high/low results which havent reached the stage of affecting blood cortisol.
It may be worthwhile asking your GP or practice nurse to take your blood pressure lying down and then standing up. If there's a sizeable difference, it's possible you may have Orthostatic Hypotension, which could explain some of your symptoms. Low dose Fludrocortisone may be prescribed, which is mainly used for adrenal insufficiency but it is also prescribed off-book for Orthostatic Hypotension.
Thank you for your reply! I will certainly ask about this- my BP has been tested a lot but never lying down and then standing.
It's weird cos I don't always have it but with flares if i stand up too quickly i can't see properly and seem kinda drunk!? It's actually quite embarrassing!
Sounds like classic OH, but you'd benefit from a registered practioner taking 3 sets of lying/standing measurements to diagnose it accurately. My local hospital's Older Person's Unit did it for me, along with full blood tests, including pituary gland. Let us know how you get on!
I just ordered a test from NordicLabs but will keep this link and code for future use!
Do you think I could be onto something here?
I've always thought these flares weren't normal and they were the main reason i bothered GP last year, the only thing they found was high TSH..tbh i feel like they gave me thyroxine just to get rid of me!There are times when flares are so bad my partner worries i have stopped breathing!
Yes absolutely cortisol is a key ingredient to thyroid hormone uptake, not too much not too little... I've not heard of Nordic Labs what do they charge?
I felt like i was going mad trying to explain to doctors the reaction i was having to thyroid meds. ' like i need them cos they help me function but also they make me violently ill'
I'm not sure if it is nordiclabs i may be messing up the name! A dr i spoke with recommended a few labs for doing the cortisol test so i just went with that one. I think it cost £120?
I started supplementing with adrenal cortex and then swapped to a low dose of hydrocortisone 5mg for 8 months, earlier this year I swapped back and I'm doing well
Thanks SlowDragon- I have a 4 point saliva test to do from Nordiclabs which I believe also includes DHEAs so will get that done and sent off asap next week.
I have also booked a GP appointment but soonest they would give me is in two weeks, never the less I'll request the test you mention!
Yeah i'm gonna give it a try when im feeling less brain dead. Maths is not my strong point and i can't get my head around how to do my own graph at the mo!
Thank you for your reply! I have a GP appointment in a few weeks so will request this- obvs anticipate being told im normal as with everything else!
I've been reading up a little about low cortisol and the symptoms do sound incredibly familiar and I think it's significant that my flare ups and symptoms worsen so severely on thyroid meds! I carried not taking it in higher and higher doses for ages because i didn't connect the two and just thought it would eventually make it better!
Dr Peatfield's book is quite insistent that adrenals should be supported before thyroid for the best outcome... the NHS don't agree as adrenal fatigue doesn't exist!
'consider Addison's disease in a person with: Hypothyroidism where symptoms worsen when levothyroxine is started — elevated thyroid-stimulating hormone in isolation may indicate hypoadrenalism.'
I know it's different from adrenal fatigue but its so odd to acknowledge one and not the other.
I am a bit worried that I may have Addisons so it would be good to rule it out especially as it's just my TSH that sky rockets! perhaps i will whip out the NICE guidelines at my upcoming appointment!
Did you have adrenal symptoms prior to going on thyroid meds?
I'd have those extreme 'whitey' episodes where your head spins, feel a bit sea sick, battery is suddenly flat, hot sweat/ cold sweat and muscles lose all strength... my 9am blood cortisol always around 250... SST result 263 - 510
Ah found what I wanted to share (filing system is non existent)
This is from radd 's library and makes it really easy to find your level of collapse!
It was after I had been on T3 for 6 months and then finally saw the NHS Endo who reduced my dose that I started getting the internal tremors and they were a constant until I added the adrenal support
that's interesting. I've actually put off seeing GP about this because i figure they'll just stop my thyroid meds or reduce them to nothing....but i gotta try! I do get intermittent tremors on any dosage and i also have them intermittently pre diagnosis too!
There is no middle ground- that's how conventional medicine works. Its either in range= normal. Or out of range = abnormal, disease. Its like that for every test not just adrenals.
Only functional/alternative medicine treats along the continuum of the range/when it's in range but not optimal or symptomatic.
Even when my test results are markedly abnormal, my GP will often imply that ‘they’re abnormal but not abnormal enough to warrant referring/treating/doing anything’ so sometimes one wonders what the point of the ranges are anyway!? 🤦♀️
Thank you so much for this info- i finally feel like im starting to make sense of things a bit!
Yeah i can only really just about tolerate the starter dose of either t3 or t4 (mono)and to be honest i can't even manage that longterm as those flare up symptoms build up steadily. Dr suggested last year i do combo t4+t3 therapy and i honestly felt like i was dying for the months i was on that.
I'm going to chase my GP for these tests! thank you so much again!
May I ask how you treated your adrenal issues? Did your GP take you seriously?
I'm worried they'll just fob me off with the old 'prioritise diet, exercise, sleep etc' but I'm already doing all that to the best of my ability (when well enough!)
Thanks HealthStarDust TiggerMe do you know how I can find their posts?I thought of them before but thought they’d deleted their account/posts as I couldn’t find anything
I remember having to use google search to find their posts a while ago and as they posted a link within each post for their last post it was possible to track their journey. Try that GreenTealSeal
She was doing pretty well at the time and had some rescue puppies to concentrate on, she does find the forum quite intense sometimes.... she seemed to be heading in the right direction so I'm hoping no news is good news
That’s fair- I would literally drop EVERYTHING for puppies!😂
Yes I can understand, the forum has been invaluable for me but I do find it very sad and overwhelming sometimes seeing the amount of us that are being constantly let down by doctors that think this is so easy to treat I can feel a big rant coming so I shall stop there!
I’m already reading some of her posts and they are invaluable! I’ve often wondered why I can’t really tolerate a proper dose of levo or lio and I think I’ve found my answer!!
also may I ask just one more quick question…. did you ever try adrenal cocktail style recipes at all?
I’m just wondering if it worth me trying it after I’ve done my cortisol test whilst awaiting results! Just desperate for some relief cos at the moment I’m just cycling on and off thyroid meds, which is absolutely not sustainable or good for me I imagine!!
Yes, adrenal cocktails are great for feeding your adrenals, I still take 500mg of buffered Vit C everyday and have now got used to adding salt to things, having been bought up in the salt is poison era!
I'd get on them straight away if it means you can stabilize your thyroid dosing
If you want to try an experiment try a little 1cm hydrocortisone cream 1% though short lived I found it gave me enough lift to get through an awful Endo consult
Oh this is encouraging to read!! I googled it and some said it was useful and others said it was a faddy health trend- I was a bit dubious but guess it can’t hurt to give it a shot!
Will starting it now affect my cortisol test I have to do tomorrow though?
The one I was recommended I think is orange juice, salt and cream of tartar or something like that!? Tbh I already madly crave salt and orange juice all the time anyway- there often time when I can’t finish my meals but I will happily just pick and suck all the salt off of it! 😆
Interesting about the hydrocortisone cream! I could defo do with a lift before appointments - I often skip my meds for a few days before so I’m a bit more functional, if I stay on them I just get muddled, confused, cry loads and they just dismiss me as some crazy lady unfortunately!
It was actually a dr that suggested my main issue is my adrenals (not NHS tho obvs) and suggested the cocktail for now to see if it helps. I was very very dubious initially but having had a few days to think it over I think they’ve hit the nail on the head really! I’m hopeful once my results are back they may agree to trialling some hydro or something to help my adrenals recover and stop the merry go round of jumping
This is how I got started, dabbling with various things to see what worked and I'm pleased to say I have muddled through ok.
I've always found taking my T3/4 first thing worked best for me as that is was when my cortisol was just in range before dropping off for the day, I think this is why dose splitting never worked for me it just made for a bumpy ride
Well after a year feeling abominably awful on levo/t3 mono and combo I feel more than ready to start dabbling! My dr thought that maybe adrenal cocktail may help me with tolerating meds a little bit better for now, until my cortisol results come back!
Interestingly I also find splitting dose of levo or lio doesn’t seem to do much for me! I think my dr wants me on t4 t3 combo eventually as I’d like to have a child and stuff but maybe it will transpire that will better adrenals I may not need the t3, who knows!?
I'm also one of those that craves salt too. I find adrenal cocktails really helpful. Very simple and lots of recipes online 😊
Sorry I've not read your whole post but I also struggled to tolerate thyroid hormones when I was first prescribed them. Also it's taken me over 18 months to get up to 87.5mcg.
I started off with tiny pieces of tablet approx 4 or 5mcg of levo and very slowly titrated upwards and still am doing so now.
Thank you for replying! No worries on reading the whole post, I certainly have a tendency to waffle at the moment!😂
It reassuring to hear the cocktail helped you and I’m not alone in my weird salt craving! I’ve always been more of sweet than savoury person but in the last year the idea of eating sweet things make me feel sick and I struggle with most meals too tbh!
It weird cos I can up my levo and lio and the increase seem okay for few days and then all these adrenal symptoms get worse and worse and I have to stop! It’s like an extremely miserable merry go round!
My suggestion is you check out ADSHG and Pituitary Foundation websites. Both address Adrenal Insufficiency which can be primary, secondary or tertiary. They have experienced medical panels, information leaflets and support lines. You could check out your symptoms with them so you are well prepared to explain to G.P. As many GPs are not well versed in such conditions.
What you describe echoes my experience of Adrenal Insufficiency caused by pituitary problem. You may have issues with maintaining your cortisol levels at times of higher demand. This could account for your fluctuating symptoms.
I recall being told it was important for me to start taking hydrocortisone before l started on levothyroxine but can’t remember why.
Hi Olram, thanks for your reply and for sharing a bit about your experience.
To be honest I am starting to wonder if the root cause of my TSH bouncing up and down prediagnosis is due to adrenal issues of some kind. (My Tsh could be 7 one week and then 3 the next!?) looking back o think thyroid symptoms starting creeping in at the end of ‘22 but these adrenal flares have been happening for at least 6 years and becoming steadily worse and more frequent. Im worried cos they are often accompanied by tummy pain and upset…
Thank you for sharing these resources, I’ve actually already had a peek at the addisons website and felt some of what was written there rang true with me but I’m still trying to figure out if it’s adrenal insufficiency or dysfunction/fatigue. (Awaiting test results!)
Did you have flare ups too like me? I can kinda get by with lots of caffeine but the flare ups still happen and are near constant on levo!
Did you get your diagnosis via NHS? I have an GP appointment next week so will have a good read through these resources!
Is there anything you would ask for specifically if you were me?
I have so much PTSD from speaking to doctors I need to get better at advocating for myself!
I was totally ignorant of all things adrenal before diagnosis and had done no research so diagnosis came as a shock. Please bear in mind that my experience may be totally irrelevant to you!
All became obvious eventually because I had a benign pituitary tumour that affected my optic nerve. Diagnosis followed very swiftly once a visual fields test showed reduced peripheral vision. That led to an MRI scan which showed the macroadenoma. What led up to that was a range of symptoms over a number of years.
The GP was looking at each symptom individually rather than at the whole picture. I had always had low blood pressure. Blood tests were always inconclusive and I was not on levothyroxine. Symptoms can be attributed to so many different causes and this makes it difficult to identify the most appropriate blood tests to get to the root of the problem and individuals differ in the way their endocrinology responds.
Do read as much information as possible on those ADSHG and Pituitary Foundation websites. Write down your own particular symptoms and how they vary from time to time. I would probably ask if it would be possible to rule out a pituitary tumour or Addisons as the cause of your symptoms. It may help you to think about yourself as a partner with the medics in trying to get a clear picture of what is going on.
At the start I had a mixture of NHS and private. However, my advice would be to stick with the NHS if you can because in my experience private does not always share medical records with NHS and you need NHS if complexities arise in future. Having said that, I would not rule out having a consultation with a recognised expert in adrenal endocrinology who would be happy to help your NHS G.P. with recommendations.
Thank you so much for sharing a bit more about your story- I hope you’re doing much better these days??
I’ve already made some notes from the websites and gonna take a print out too! Defo feel like pituitary and adrenal issues need to be ruled out properly- I know it’s rare but I think it’s odd how much worse my symptoms get on thyroid meds!
I have a GP appointment next week so if they agree to refer me to endocrinology I might try and see someone privately in the meantime…just for peace of mind really!!
May I also ask, did you have issues with loss of appetite at all?
It something that’s been getting much worse for me in the last year and at the moment I can only manage juice and soup. My weight has always been on the low end (even with a high TSH!) so I really want to speed things along a bit before I lose too much weight!
When I was cortisol deficient and before I started on hydrocortisone, I had an upset tummy. That was before the hypothyroid was diagnosed so different from your situation where you are already on thyroid meds. Generally, I am also more inclined to weight loss than weight gain.
TBH I am questioning if i am even hypothyroid as its just my TSH that was high...which after reading it seems is common with adrenal issues?
I am constantly on and off thyroid meds at the moment as i get so ill when i take them but if i stop completely i get awful constipation and digestive issues so currently just stuck in this cycle until i am able to speak to a dr again! It's miserable!
I am the same in regard to weight loss. I’ve always been on the small side and never struggled with being over weight or excessive weight gain.
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