I got my results back and am keen to hear any thoughts or feedback please!
I'm surprised that the test results don't seem to align with severity of my symptoms/flare ups so keen to hear some thoughts as I'm feeling a bit lost right now.
Based on symptoms alone I'm still inclined to believe that adrenal issues(in some form) are my main problem. (symptom flare ups that coincide with high tsh, worsening of symptoms on thyroid meds etc)
Is it worth checking other adrenal hormones?
I have an am blood cortisol test booked for tomorrow plus GP have just called to offer me a smear test straight after....... so lucky me! I really wish Dr's took endocrine issues as seriously.
Still plan to push for an endo referral to double check everything.
Thanks so much
GTS
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GreenTealSeal
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These results do indeed look ‘OK’, certainly to my untrained eye. Obviously the elevated evening level stands out. I don’t suppose you use asthma inhalers or routinely use hydrocortisone cream? No oral steroids, such as prednisone?
The mid morning result is fairly low.
You must be a bit disappointed, I know you were anticipating these results.
humanbean is such a treasure trove of knowledge where cortisol tests are concerned, I wonder what they’d make of them?
What are your ferritin levels like? This can negatively impact on being able to tolerate Levo, etc.
Hello! Thanks for your reply! Yeah I’m feeling stumped but still feel like I’m on the right track w adrenals. Would love to hear your thoughts humanbean if you had a mo!
So my ferritin/iron has always been pretty crap but I’m working on it now with Three Arrows. However I feel my issues on t4 or/and t3 meds are so severe I feel like there’s something else at play. The longer I stay on the meds the worse my symptoms and flare ups become. I can barely manage 2-3 weeks before I have to stop. I stuck with it for months last year and I could hardly walk because my limbs hurt so badly and I felt sp weak all the time. It affected my memory and speech quite badly as well and o just couldn’t bear it any longer.
Hi there! I am a step behind you on this cortisol thing, still researching, and have had to try and rinse/re-try my own cortisol test as getting a full vial of spit proved more impossible than I expected!
But - based on my research and notes, not personal experience, here's my thoughts.
- The out of whack levels in the evening - even though morning is "in the reference range" - are still counter to what is expected and clearly yellow/red status. If this was me (not being studied on this), this would definitely give me hope that there is a root cause issue here.
- I remember you had a horrible day when you took this test, I'm wondering if your bouts with dizziness/confusion/fatigue that day correspond to when you took the samples. I wonder (as you did too) if you had had a better day, if the cortisol pattern would have looked more normal.
- Other tests - are you able to schedule the usual deeper dive tests? I know there is the ACTH one. Especially since you were feeling so bad that day, and you don't know how that impacted things, an ACTH test could help rule out adrenal insufficiency. And I've read about Aldosterone - which I think has to do with blood pressure. I googled it : ) and it is also related to being thirsty. When you feel like that do you ever try a Gatorade (or another electrolyte drink) and does it help restore your electrolyte balance? If you test this, and feel even marginally better, then you might be able to link your electrolytes/hydration back to adrenal problems.
- Since high cortisol can interfere with Ts conversion, I'm wondering if you always take your Levo in the morning... as if you take it in the afternoon, I bet that would be more likely to be disrupted. Knowing that high cortisol can impair your Ts, maybe it is your adrenals creating that intolerance.
This is the blind leading the blind. I just remember your previous posts, and your journey, and have done some cortisol test research myself. So just food for thought.
Yeah on that day o felt okay when I got up and then things just totally tanked and got worse and worse throughout the day until I completely crashed in the evening. I had been taking 20mcg t3 for 2.5 weeks at this stage and was advised to keep taking it for the test. Before on levo I always would take it in the morning
I can barely manage 2-3 weeks on thyroid meds as these symptoms and flare ups get soo much worse so I’ve completely stopped everything for now. It only seems to get worse on the meds and I really stuck with it last year but to no avail
I am thirsty all the time and often too nauseous for food. I’ve been doing adrenal cocktails for the past few weeks but haven’t noticed any difference yet. I just constantly feel like my body isn’t holding on to what I’m drinking so I just always feel thirsty.
I have a blood cortisol test tomorrow and gp would like to review and then hope to get a referral to an endo for these for in-depth tests.
Tbh I read about low aldosterone too and I’m wondering if that may be my issue. I’d almost say that my thyroid symptoms are almost mild compared to the flare ups and issues o get on the thyroid meds 🤔
Yes!!!!!! Great idea. I called the test company and asked for tips - like be hydrated, drink a glass of water right before, let the spit pool in your mouth, smell yummy foods, but tongue scraper they did not suggest. I’m ordering one now!
Waittttt! What if there is a reason they have not suggested it. Perhaps because of bacteria on the tongue skewing results? think we need to know more. Perhaps ask the company and report back.
Having to fill it ALL the way does sound so hard to be fair. Mine only had to be 3/4 full and even that was a struggle. Did you try the sniffing a cut lemon/ apple cider vinegar trick?
On my second try I had lemons, strawberries and chocolate at your suggestion : ) I’ll get the vinegar next time!
Also HealthStarDust , going to order one anyway… may call the company but I can say that there is no lack of bacteria in a normal pre-teeth brushing morning saliva sample, especially as I tried to wring as much spit out of my cheeks and tongue that morning. Not sure a tongue scraper would be much worse. Also It didn’t occur to me until after - but few things are grosser than capturing morning breath in a vial!!!
Since I tried and failed twice, they say just rinse them out and start again. Warning - opening them later to rinse them out… totally yuck!!!
Thank you for the information! I can tell you after you have used the tongue scraper, around 10minutes later the saliva keeps flowing for hours. I don’t know why, but that has been my experience.
There was a poster recently, Lucy something, whose endo will be trialing HC treatment as despite test results not showing AI, the endo suspects that’s what is going on. So, you never know!
Thank you so much for this - makes very interesting reading!! I kinda wish I knew the name of her consultant! Don’t suppose she told you and you could pm me?🤞
The more I read your post - again, blind leading the blind here - but it does seem you have a good suspect here in the adrenals/cortisol issue.
Those episodes you describe stuck in my head - the weakness, confusion around getting your words out, being thirsty. None of those things are on my thyroid bingo card on any given day.
And just Googling a little more. We know that when one takes Levo/lio - by design, it increases your metabolism, ie, it is expressly how our body creates energy… which then demands a reaction from your adrenals and cortisol … which if already stressed or faulty, would trigger a crash like you described. I keep seeing fatigue, weakness, and cognitive issues as I scan things. Which is what your posts talk about.
You said you’re getting that serum cortisol test, which will be cool to see the comparison to your home test whether morning or afternoon.
Good luck with that, and with your endo referral and moving in to the deeper dive on this!
Ps full disclaimer - above is from me googling : ) no expertise here!
No worries, I too have consulted Dr. Google many times about this because I actually feel like my most debilitating issues do not fit with classic hypothyroidism. I almost feel like my subclinical hypo was uncovered by coincidence...i went to the Dr about these awful flare ups of the symptoms you mentioned above and even the Dr seemed dubious that subclinical hypo could be the cause, but was clueless about what else to test for so gave me levo and sent me on my way.
It defo feels to me like my subclinical hypothyroidism is a symptom of something rather than the cause if that makes sense. I just wish I could get a GP to take me more seriously!
GreenTealSeal I am emerging from the rabbit hole I just went down. Definitely check out that link above - the first paragraphs are on the bullseye!
Also - although many people (including myself) take some of the STTM info with a grain of salt - still some good stuff to discern here for your adrenals:
This all so interesting, thanking for disappearing down the internet rabbit hole on my behalf!! 🙏 Heloise response is particularly interesting and fits well with me. I defo feel any kind of thyroid med at any doseage causes a strain of some kind in my body and it only gets worse with increases. It’s even present on baby doseages.
I will check out the STTM link to tomorrow - there’s so much to get my head around and it’s all the more tricky when feeling crap! 😬
I just desperately want to work out what can’t keep up in my body be of adrenals or something else!
Have you considered Cushings syndrome? With your cortisol rising late evening it may be worth seeing if your symptoms fit. Also with you saying you're thirsty all the time; I have a relative with this problem.
Obviously I have no idea if you have this condition but it may be an idea to have a read on the forum search for 'Cushings' or 'Cushings syndrome'
I had a peak at the links and I'm not sure my symptoms fit aside from maybe just one or two (weakness, low sex drive)I definitely don't have the hallmark buffalo hump, weight gain or red round face. I am slim and my face is always super pale/grey.
It's weird because so many of my symptoms align with low adrenal hormones so I'm just left feeling stumped (and very constipated because I can't tolerate my thyroid meds lol) I know cortisol isn't the only adrenal hormone so I'm guessing/wondering if its one of the other hormones that are low/wonky- not sure how likely that is though.
Yes it's difficult. My relative isn't over weight either and no 'buffalo hump' but they found the cause to be a pituitary problem; she is always thirsty too.
Oh that's interesting! All of this is so complex isn't it!? ...and then it's an extra layer of complexity trying to find a doctor to help you feel better too.
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