Curious…aside from high in range TSH are these frees pretty euthyroid?
These were taken before starting thyroid medication. Negative for both antibodies.
I’m coming around to the idea that I’ve been misdiagnosed as thyroid medication makes me feel worse.
Off meds my TSH can vary from 8-4 within a week which doesn’t seem classic of hypothyroid? And my prolactin levels do the same. My cortisol saliva levels also seem to be up and down like a yo-yo.
And we won’t even get into the female hormones but I can’t stay off the combined pill for any length of time without severe male pattern hairloss, cystic acne and significant decline in my over all health. Plus I’ve never had a period.
Anyone else out there with NCCAH cos this has been mentioned to me and I’m wondering if that’s what’s causing all my hormonal wonkiness…
Thanks!
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Not that I can think of? Do you mean like iodine and stuff?
I take b complex and iron but always stop the B on good time for testing. Aside from that I take the Yasmin contraceptive pill cos I can’t manage health wise without it, but aside from that… nothing.
It can't be the culprit because my health was awful before I went on it in my late teens and I never started periods. I feel better on the pill and am unable to function without it. Which to me points the finger of blame to my sex hormones never working properly in the first place- pure speculation of course but I'd be flabbergasted if something that helps me feel well is the issue.
Just because you fell better taking it doesn’t mean it isn’t effecting your thyroid numbers. Quick google suggests contraceptive pill can affect thyroid.
Lots of drugs cure one symptom but start a bunch of others.
Also just to say that I did try stopping the contraceptive pill for nearly 6 weeks but the thyroid meds caused the exact same issues. It doesn’t seem to make any difference in how I respond to thyroid meds whether I’m on or off the pill. 😬
I’m not sure 6 weeks would be long enough to reset any impact to your thyroid caused by contraceptive.
Bottom line is, there are either one of two things happening:
1. you don’t have hypothyroidism based on your frees and your TSH is being impacted by a non thyroidal illness, especially given how much it bounces around (for reference, my TSH was consistently heading in one direction before diagnosis for some years).
2. you don’t have hypothyroidism yet.
Or, as greygoose has mentioned below, you may be hypothyroid as your TSH is working harder to get your free’s so high. Although, given you’ve mentioned your frees are the same even with variances of your TSH, I’m not sure about that.
Good luck. If it wasn’t for my antibodies, I’d be inclined to think I’ve been misdiagnosed based on my horrible experience with levothyroxine.
it’s weird because i have clear flare ups and symptoms of something- that incapacitate me at times. They seem to coincide with my TSH sky rocketing.
I’ve done much longer off the contraceptive pill, I managed nearly 12 months before, resulting in me becoming too ill to function and I lost my job. these flare ups have been going on for far longer than any potential thyroid issue. Things only progressively decline off the pill so I don’t think quitting it will help me rn.
Plus there are many links that say it’s okay to take the combined contraceptive pill with thyroid medications …just that you may need a slightly higher doseage of levo/lio.
Did you feel better before you started taking any thyroid meds at all?🤔
I was diagnosed during pregnancy and was very unwell. But, before the pregnancy, physically I felt a lot better than I do now on levothyroxine.
As for your TSH, your ‘flare ups’ raising your TSH is no coincidence as any non thyroid illness would mess with the thyroid regardless of any thyroid disease. This is why they don’t usually like to test people in hospital settings unless they strongly suspect thyroid issues.
It’s hard to say if you was misdiagnosed or not. I am not sure any of us on the forum has the answer.
aside from high in range TSH are these frees pretty euthyroid
FT3 54.05% through the range.
FT4 56.00% through the range.
Yes, they are euthyroid. BUT they're only euthyroid because the TSH is high. It's the TSH driving the thyroid to make those levels. But it shouldn't have to. And that's what makes you hypo: an under-active thyroid.
Already been doing that for around 2 months now. My TSH swings from 4-8 within a week but frees are always atleast mid range. I really don’t feel like hypothyroidism is the main issue because I feel so unwell on the medication.
Well, that doesn't necessarily follow. I felt very unwell on levo, but it didn't mean I wasn't hypo because I was. And even if it's not a problem with the hormones themselves, it could be the fillers in the tablet are negatively affecting you.
I really have trialled many doseages/variations/brands of both levo and lio over the last year or so and they all cause the exact same issues and exacerbate these awful flare ups I get. I’ve never had issues w fillers so I’m not sure in my case that’s the issue.
I actually only saw GP the other year because of these debilitating flare ups I was getting and they said it was caused by subclincal hypo but that doesn’t sound right to me either.
lol I think he was trying to blind you with science. I don't really think he knew anything about it and just said the first thing that came into his head.
V interesting to hear this because I’m convinced adrenals are playing a huge role here.
Gp gleefully told me ‘normal no action’
But I actually feel my best in the mornings and then these horrible adrenal issues tend to ramp up later in the day.🤔 or if I’m trying to increase thyroid med doseage
My blood pressure completely tanks on thyroid medications too which seems telling? It mostly stuck around 94/63 which gp said was low but again ‘no action required’ apparently.
Have you tried NDT thyroid med ? I couldn’t tolerate synthetic medicines iam more or less okish on NDT . I discovered I have conversion issue too from DIO2 gene test .
Hello! So this is the only medication I haven’t tried yet…mainly cos I’m so worried it’ll produce the same repsonse. 😬
It’s something I’m keeping in mind to try if all my endo tests come back clear- not sure if you’re in the UK but it’s so expensive on prescription here
Iam from Uk have had thyroid issues since 2017 ( possibly way before I guess ) . I couldn’t tolerate NHS t3 nor levothyroxine it was awful I felt so much worse like you described . Have u tested vitamin deficiencies? Have you tested adrenals ? If your adrenals are not in good shape no thyroid med will work properly unfortunately. It’s hard as u need to juggle all balls same time 😳 iam working on adrenals . I have stopped drinking 2.5 month ago not even a single drop of it I have decided to change my whole life and try to do even more to better my health in a long run hopefully it will improve my thyroid too after heavy booze ( I went through a lot past two years ) …. I order mine from USA and it costs me around £270 every three months ….. and I don’t work !!!! I have no choice …. It’s hard very very hard but I don’t want to remain sick I want to find ways out so desperatly
Sounds like you’re making some progress! It does sound so hard though!
I think my adrenals are wonky but I don’t know how to fix that. All the diet and lifestyle advice generally given here I have followed for years and I don’t drink…but things have still deteriorated regardless and it doesn’t impact the debilitating flare ups I get. It’s almost like my adrenals bounce between producing too little and then too much and there’s no middle ground.
Like taking thyroid meds seem to demand more cortisol but my body doesn’t seem good at making it consistently in the first place 🤔
It's easier to just convert both results to percentages through the range - using our handy calculators - and just look at the difference between them. For good conversion the FT3 the FT3 should be just slightly low than the FT4. The wider the gap, the poorer the conversion.
So for example my ft3 was 6.4 and ft4 13.4 does it mean I convert ok ? Sorry just giving you an example random numbers to get understanding in simple ways
But to calculate the percentage through the range, you need to know the range.
Although I would say that those results would suggest they had more to do with having Hashi's than poor conversion given that the ranges are very often 3.1 to 6.8 and 12 to 22! The FT3 would be almost 100% and the FT4 more like 30%. That just can't happen with conversion of T4 to T3 alone. You can't convert more T4 than you actually have.
Or, did you mean 6.4% and 13.4%? That would mean your very under-medicated so would need to increase your levo quite a bit before you could tell how well you're converting.
But, if your FT3 was 6.4% and your FT4 was 73.4% you would be a very bad converter. Good would be FT3 70.4% with an FT4 of Z3.4% - or even down to 60.4% for the FT3. It does depend a lot on the person and how much T3 they need.
Not sure I've simplified that, but let me know if I haven't. 😂
Because you can only see how well you convert when taking T4 only. If you add in T3 - as in NDT - it skews the numbers.
You don't need an rT3 test - and you never have been able to get one in the UK, it's always sent to the US to be analysed. There are so very many causes of high rT3 that have nothing to do with thyroid, that it tells you nothing about your conversion. And it certainly wouldn't if you're taking T3!
I just measured my temperature and it shows 37.1 degrees c , few days back my bones were hurting like flue but not flue and body gets hot does it mean I have to decrease slightly a dose as my t3 is nearly top range as 6.4
I shouldn't think so, no. I know that with a healthy thyroid your conversion rate would diminish when you have an infection to conserve resources and force the body to rest, but not the same thing when you're taking T3 exogenously. There have been several discussions on here about that and the general conclusion is that nobody knows. But probably best not to reduce your T3.
Yes, I would have thought it pretty obvious that Robinson's calculation only applies to people taking just Levothyroxine. My last test that included FT3 and FT4 gave me 0.21, the latest didn't test T3 so I have no idea what it is now but judging by my symptoms, I'm still a bad converter.
Yes, thank you, I do know how to recognise poor conversion but be do not have any results for FT4 and FT3 from when the OP was on levo mono-therapy. So, there's no way of telling if her conversion is good or bad. But, in any case, I doubt if poor conversion would cause these problems. And I don't think having Hashi's would, either. Both those problems could account for low FT3 but we don't know that she even has low T3 nor that this is a low T3 - i.e. hypo - problem.
It was just a suggestion and easily checked by plugging in the FT3/FT4 numbers and doing the calculation. I did mine and the result was I'm a bad converter.
Mine neither but hey, the thyroid is the ECU of the body and there are incredibly complex relationships between the key glands, the pituitary, hypothalmus and the adrenal, the so-called HPA Axis, this is why thyroid problems can be so difficult to deal with. But your antibody levels are fine. The last time I had mine checked (3 yrs ago), they were off the chart as I was under-medicated. I'm also a bad converter of T4 to T3.
Being under-medicated has no effect on antibody levels. There's no connection. If your antibodies were unusually high it was because you'd just had - or were having - a Hashi's 'hyper' swing, and the antibodies were coming along to clean up the blood.
So we are all familiar with a general lowering trend of TPOab / TGab levels over many years following diagnosis and treatment (less thyroid tissue to attack >>> less antibodies as a result) .... and we expect fluctuations within that (as a result of attacks)
i just had a look for any data on levo dose / underdosing and antibody levels .
and found this 2019 study which measured TPOab / TGab in newly diagnosed hypo's and followed them . It is showing thyroid hormone replacement (levo in this case ) had a very significant lowering effect on both TPOab and TGab , within a very short time from starting levo (ie. a few months, not many years) .
obviously , that doesn't mean the higher T4/T3 caused the lower antibodies ... there could be other reasons for starting levo to lower the antibodies... eg TSH lowering for example.
Lord above! That's dense! No way I could get my head around all that at this time of night.
But, I'm not happy about this study, something feels 'off'. For a start, right at the end it says: These results might suggest that levothyroxine treatment alleviates thyroid destruction in hypothyroid AIT patients. Are they suggesting that it's the TPO/Tg antibodies that are causing the destruction? Not that that has anything to do with the subject in hand, but...
So, the question was: does being under-medicated cause antibodies to be high? You said: thyroid hormone replacement (levo in this case ) had a very significant lowering effect on both TPOab and TGab , within a very short time from starting levo (ie. a few months, not many years) . But, given that these people had only just started levo, and the study only lasted 3 months (I think), they were surely still under-medicated at the end of the study, no?
Also, I really don't see how you can tell if antibodies have truly reduced in number, or if they're just fluctuating, without testing them every day. This article needs time and consentration that I haven't got at the moment, but I have to say that from what I have read, it just doesn't sit right with me. I'll probably realise just why in the middle of the night. And will then have forgotten it by the morning!
yes it is a bit heavy going, i will read it in more detail one day when i have time. Just thought it might be worth looking at as it includes results for antibodies and U/s scans and some sort of fancy thyroid imaging.
briefly i got these impressions:
they did give a detailed account of the immune stuff ~T cells / antibodies role etc ... not the usual guff. they are very clear that it is not the antibodies themselves doing the damage.
i think the 3 mths may have started from when they were classed as euthyroid . (ie. stable 'in-range' TSH/ fT4 /fT3) but from first reading i'm not 100% clear on their timelines . but yes , your question of high enough dose ?/ long enough? is valid.
They were doing a kind of CT scans and Ultrasound , so they were collecting a pretty good picture of what was actually happening physically .
Yes, but the study was still on the effects of levo on the advancement of the disease, not on the antibodies themselves, so not really relevant to the question in hand: does being undermedicated increase antibody levels? And, from what I can gather the answer is still 'no'.
as with everything ... due to scant testing/ interest in antibodies, there is not enough data to know much for certain , and so we rarely look at frequency of autoimmune attacks (and resulting antibody levels) in relation to dose changes when discussing results on here .
I personally suspect that since higher TSH / underdosing allows more thyroid activity , this may allow more immune activity within the thyroid .. (resulting in more antibodies) . and conversely , a lower/ supressed TSH allows less /no thyroid activity, which may reduce opportunities for immune activity in there (resulting in less antibodies) . but that is just a hunch.... not science based at all .
Hence me poking around looking for research data sets that includes antibodies/ thyroid state/ and level of treatment .
I personally suspect that since higher TSH / underdosing allows more thyroid activity , this may allow more immune activity within the thyroid ..
That is one theory, yes. I've heard it before but that is a long way from saying that under-medication causes high antibodies levels. And that study just doesn't back it up, from what I've seen.
it's a long way from saying that under-medication causes high antibodies levels.
agreed, that would be far too simplistic .. and is not what i'm suggesting.
just put it up there for anyone interested, and to suggest we keep an open mind to the possibility that more thyroid activity may allow more frequent outbursts of autoimmune activity than would happen if thyroid was kept totally inactive.
you'll be pleased to know i've got to go to work now and get paid for being a nuisance, rather than doing it for free tatty-bye x
There are many papers showing Levothyroxine thyroid hormone replacement to reduce thyroid antibodies, particularly TPOAb. Previous articles by Isabella Wentz and Datis Kharrizian claim this to be due to reduced thyroid gland activity thats reduces the autoimmune response.
TPOAb's have always been the more commonly tested than TGAb's in determining a Hashimoto diagnosis because is the more aggressive auto-antibody having more varied and complex links to the immune system. It is now seen as a contributory driver of the common denominator interleukins (damaging WBC’s) seen in many autoimmune conditions.
Adequate thyroid hormones help develop and regulate a healthy immune system, exerting anti-inflammatory and anti-apoptotic effects. When we are hypothyroid we lose these. Therefore, as well as the inflammation caused directly by thyroid antibodies, a thyroid hormone deficiency plays a significant role in contributing further inflammation and replacing those missing thyroid hormones may help directly in reducing TPOAb’s, with the lessening of thyroid gland activity now regarded as a secondary effect.
It’s the prolactin levels that made me wonder. I think those alone would make me consider the possibility for a (and I pause to stress the word “benign”) pituitary tumour. Likely very tiny too if there is one—but that’s all it would take.
Might be worth asking the question again. Feels to me like they’re failing you by not investigating more thoroughly.
Thank you, I completely agree! Definitely going to push for a scan at least to rule it out!
I defo have the symptoms related to high prolactin.
I’m also going to push for a thorough investigation into Late Onset Congenital Adrenal Hyperplasia as that seems to fit with my overal history pretty well- I just need someone to care and listen
Just a thought. In the past when you started t3 only had you left 12 weeks since you'd last taken any t4?I couldn't tolerate t3 if t4 was still on my system.
It took me long to establish this having given up t3 thinking I couldn't tolerate it like I couldn't t4.
Hello! I didn’t leave 12 weeks but I left a fairly large chunk of time. My issue is that the longer I take the meds the worse I feel, like the severity of symptoms increase dramatically the longer I’m on it.
It's messy isn't it. Sex and thyroid hormones don't always play nice together and you don't know who started the fight. I'd get as many bloods as possible done by gp or privately to take to initial appointment along with past results and paperwork but imagine you already was on it. Good luck x
If this endo isn't knowledgeable enough then speak with secretary of one I recommend.This really should be taken seriously within the nhs.
I get it completely as sex hormones played absolute hell for me and you are in even worse situation with pcos and lack of periods. This has never been normal and shame on gp's/ consultants not taking this on board x
Totally get that it’s not a healthy TSH but what’s really throwing me is that my ft4 has always happily sat around 16-17 for years when I felt fine and not hypo at all.
A lovely user mentioned late onset adrenal hyperplasia to me and I’m honestly wondering if that’s the cause for all my mad wonky hormones and the wild fluctuations that can occur within a week.
I was told before TSH is slow to respond so it’s bizarre that mine can be 8 one week and 4 the next? 🤔
Pure speculation but o just feel like there’s something underlying that’s going on and throwing off my endocrine system?
But that doesn't mean it's 5ish when you're on levo. Start taking levo and you lose not only the T3 the thyroid makes but also the T3 from conversion that is done in the thyroid itself.
This is why I’ve tried levo/lio combo and lio only and the same issues persist.
The higher I push the dose the worse I feel and I have increases in these concerning flare ups of adrenal symptoms which are serious enough to make me vomit and pass out at times.
Edit: just to add it’s what confuses me so much that I feel so unwell on thyroid medication. I actually feel much better off of it and although I do get constipation it comes and goes (I presume along with my Tsh fluctuations!)
I’ve lost the plot a little, so might be repeating myself.
High TSH and “ok” Free Ts and no symptoms probably explains every single one of us if we had a Time Machine and blood tests in the years up to diagnosis. TSH is the canary in the coal mine.
Just because TSH is high though does not in any way mean you should be on Levo (yet). If we treat on symptoms then if you could isolate your thyroid i bet lots of us would wait.
Objectively I think the most glaring suspect is that you’ve had no periods… and pile on to that, you feel better on the pill and terrible off it.
Isn’t that what you’ve said is predictable and consistent?
No worries. I am also losing the plot and repeat myself loads lol.
I agree cos when I take levo and my TSH is at 1 - I actually feel awful and am completely unable to function.
I was diagnosed PCOS in ‘21 after my health completly tanking when I was off the pill for nearly 12 months. The longer I was off the worse things became, I lost my job etc. never had a period either but that’s not surprising…they never started so why would they magically appear nearly 2 decades later.
Tbh I question my PCOS diagnosis too as I don’t have any obvious signs of insulin resistance and adjusting my diet and trying inositol did absolutely nothing either. If anything my weight has always been on the low side of healthy and cutting carbs etc that’s recommended for PCOS makes me feel unwell and I just lose weight…
Remind me also - despite your disappointingly inconclusive cortisol test, did you do any of the follow up on addisons or Cushing with that synachten thing or whatever that short list of cortisol deep dive follow ups are?
Ps. Googling that fluctuating TSH I too came up with that pituitary idea, which someone above noted more knowledgeably than I could.
Hah! Yes saliva cortisol just completely muddied the picture for me really!
I have an endo referral so hoping to push for some more thorough adrenal testing!
I worry about pituitary too but then my TSH and prolactin only started going wild in the last year- they were both pretty normal till then. Defo going to push for investigation of pituitary too tho!
There is something to be said for the old fashioned approach to “diagnosing” something based on what treatment it responds to.
So whereas I do think you have a thyroid problem of some sort… and I agree with everything said above about exploring all types of T4 and T3 mono… but you’ve done that. And also of course we know all this hormones business is interrelated in complex ways.
But in the spirit of only change one thing at a time - Personally with those Free Ts after so long off Levo, I’d just stay off it so I can isolate the other treatements.
The idea that you go off the pill and feel terrible - is just so crystal clear. And the fact that you’ve had no periods. That’s really clear and also I don’t even think that common.
I’m just playing Dr. Google here, but although you question the PCOS… and I sure do support questioning anything a doctor tells us, but it sure does seem like estrogen/sex hormones are at the center of a storm.
Like I know PCOS is a relatively common condition and I have many friends with it but when we chat and compare notes…everyone looks kinda horrified when I talk about never ever having any periods ever. Their PCOS doesn’t seem to completely incapacitate them either!?
I feel like my sex hormones have never been normal or functioned correctly and I was just told for decades it was no issue. It’s why I’m starting to suspect something like the adrenal hyperplasia as I read it’s often misdiagnosed as PCOS.
Just because things JUST started going off the rails doesn’t mean it wasn’t an issue earlier that has now just reached a breaking point.
Like my 8 years of being ok, running multiple marathons, working like crazy, living it up! Then all in the matter of about a year my TSH went from single digits to like 50 and I thought I was dying. It was just my adrenals finally giving up on compensating for my failing hashi thyroid.
Pituitary scan.
Follow up on post-saliva cortisol tests.
That’s what I’d do next.
And that’s me, Dr Google, signing off for the night 👩⚕️
Just a thought and not quite the same situation as yours but my daughter who is very lean and athletic was diagnosed with PCOS when she lost her periods. My instinct was that this was wrong and it eventually turned out that she had hypothalamic amenorrhea.
I feel like PCOS diagnosis is chucked out too quickly without excluding other issues. PCO can very often be a symptom of an underlying health issue but there’s rarely any other investigation.
Sorry for your daughter but glad she had you to push for answers!!
the pituitary foundation have some very knowledgeable nurses on thier helpline re things hormonal it might be worth giving them a ring. They also know where to find decent endos re these issues.
I've been following your journey and we seem to have a lot of the same symptoms and going through similar investigations around thyroid, adrenal and hormonal.
This comment of yours resonated so much for me! sudden flare ups of adrenal-like symptoms that can incapacitate me for hours. Increasing in severity and frequency for the last decade
I was diagnosed with PCOS at age 14 (30 odd years ago) due to very heavy long periods and high testosterone - Unlike you I've have had regular periods, although heavy and long until I went on the pill soon after diagnosis. These then completely normalised in my early 30's after I came off the pill until perimenopause hit and it all got messed up. I'm slimish and lose weight fast when stressed or restrict carbs - carb restriction makes me feel very ill indeed! Like you, no apparent insulin resistance. I'm going to try a continuous glucose monitor for a couple of weeks to see if symptoms (the flares not the background ones there all the time) are related to glucose drops, is this something you've considered?
The research I've recently done around PCOS seems to point out that symptoms can vary immensely from woman to woman - to the extremes we both have regarding periods - yours non existent and mine regular until peri. Also, that many women do not get overweight (both of us). I too have been researching LOCAH, but everything I read about it says that while it can be misdiagnosed as PCOS, it does not cause cortisol problems and glucocorticoids are not warranted or prescribed. I was beginning to think maybe my PCOS is actually LOCAH but this would still not account for the adrenal issues I also think are playing a part in my symptoms...unless they have got that all wrong....🤷🙄Seems both PCOS and LOCAH are treated with the combined pill and lifestyle measures.
Now, pituitary problems, that's a separate issue - sounds like you will be trying to investigate this, I will be doing the same!
My thyroid is behaving in a different manner to yours - TSH normal and lowish normal T4 and T3. No antibodies same as you. I've not tried thyroid meds so can't compare experiences there. Have you had a thyroid ultrasound? My was fine, just a few tiny cysts that are considered normal for age so ruled out any physical problems with the gland itself.
My blood pressure during the day is 90's/60's but in the eveing was dropping to 80's/50's - GP was not too concerned but I persuaded them into giving me a 24 hour monitor to check what happens every 30 minutes and overnight. It revealed at night it drops to 70's/40's - that surprised them and made them sit up and take more notice. Blood cortisol 316 so not dissimilar to yours, not great but not bad enough too indicate Adrenal Insufficiency or at least not imminent adrenal crisis. It has triggered an endo referral for me, glad to hear you will be seeing one too. Does your blood pressure get higher off thyroid meds and only drops when on them? Might also be worth asking GP for a 24 hour monitor in case something strange going on at night. Just something that might build a bigger picture? I'm assuming sodium and potassium ok?
If you feel a bit better on the pill then it seems that's probably at least worth taking while you figure out the other stuff, just to minimise the suffering? I guess depends on if you will be getting the endo appointment soon so don't want to muddy the waters if further testing (short synacthen) is offered as then you need 6 weeks off oral oestrogen.
I know this is probably not a great deal of help just thought I share with you what I'd found out and what I'm going to try in hope that we can help each other through this to better health 🙏😊
Always useful to compare notes and we do sound quite similar!
'I'm going to try a continuous glucose monitor for a couple of weeks to see if symptoms (the flares not the background ones there all the time) are related to glucose drops, is this something you've considered?'
What you said above is interesting to me too - are you saying you have adrenal symptoms at a low level all the time and then they can flare up? (Just checking I've understood cos my brain is fried today lol) If so this is exactly what I experience too.
I haven't considered a continuous monitor, mainly cos at the mo I'm finding it hard to eat much of anything so not sure how useful it would be, but defo something for me to consider in future!
Interesting you also struggled with the highly praised low carb diet for the PCOS- i guess maybe it isn't insulin resistance that's at the root issue for us.
From what I've read with LOCAH some people have it and it causes little to no symptoms at all....however there is a group who can experience issues with consistently producing enough adrenal hormones. (not likely ever bad enough to cause a crisis but significant enough to impact quality of life). It's a complex condition and there's quite a few variations but there defo seems mixed views on whether glucocorticoids should be prescribed. I have done some digging and found many in an FB group that are taking low dose glucorticoids as their health deteriorates without them.
Interesting our blood cortisols are similar and yet our salvia cortisol results differed so much - yours low, mine sky rocketing! But i actually came down with a really bad cold the morning after my test so I'm wondering if that completely screwed mine up - doh!
May I ask...(if it's too personal then tell me to shush lol) did you have the high androgen symptoms (male pattern hair loss, cystic acne, oily skin etc?) cos what I'm finding most alarming for me is that these issues are always significantly WORSE each time i try to stop the pill over the years.
I also had some other issues w puberty that still make me think about LOCAH. (as a teen my mother would march me to the GP's every week nearly and we were constantly dismissed.)
I'm back on the pill for now cos I literally have no choice really! But I'm defo going to quiz endo re pituitary and LOCAH and pay for the testing if need be!
are you saying you have adrenal symptoms at a low level all the time and then they can flare up? YES, the more 'mild' adrenal type symptoms, some of which overlap with hypothyroid, low iron and perimenopause and then the flares that are an exacerbation of the adrenal symptoms specifically. Perimenopause, I now am on HRT, it helps some of the symptoms. Low iron, I have spent the last 6 months supplementing and now ferritin is close to optimal - have been iron deficient all my life it seems, just the doctor didn't bother to tell me until I became anaemic last year! Turns out I was anaemic at age 2 and then again at age 7, I suspect probably at other times too as my ferritin has always been below 30. I assume you've got all your vits optimal?
I'm left with thyroid and adrenal (maybe pituitary) to continue to investigate.
I have done some digging and found many in an FB group that are taking low dose glucorticoids as their health deteriorates without them. Interesting, glad you brought that to my attention as all I'd found out about was from medical sites. Lived experiences give a lot of extra insight. Looks like LOCAH should be something both of us keep in mind.
But i actually came down with a really bad cold the morning after my test so I'm wondering if that completely screwed mine up - doh! Yep, worth repeating the test for sure.
May I ask...(if it's too personal then tell me to shush lol) did you have the high androgen symptoms (male pattern hair loss, cystic acne, oily skin etc?) Not so much really! Even though I had high testosterone measured as a teenager I would say I developed only a moderate amount of body hair considering I am dark haired, and no male patterned hair loss. I can say this confidently as I'm a beauty therapist so have seen A LOT of women's bodies over the last 27 years, some with and some without PCOS. I don't look like the ones with diagnosed PCOS typically, although maybe some (without lots of male patterned body hair) went undiagnosed. I did get spots (not acne) as a young teenager (pretty common) with slightly greasy skin, the pill probably sorted that as it disappeared quite quickly when I went on it, and when I came off the pill at age 29 nothing like that returned. I've got dry skin actually. Now starting with some chin hairs, thanks menopause, but most women who are dark get them around meno time. My testosterone levels are completely normal now - maybe perimeno has made them go down from what they used to be, who knows! I'm sorry you are having to deal with these types of issues, it's not nice at all.
But I'm defo going to quiz endo re pituitary and LOCAH and pay for the testing if need be! Wise move, it's the next logical step, good luck! 🙏🤗
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