Thoughts please!

I am still struggling terribly to tolerate any doseage of levo or lio - combo or mono. It makes me feel even worse/is completely debilitating. I have tried changing when I take the doses, the brand etc you name it and still no better. It’s notable that my blood pressure gets too low on it too.

Am I struggling because I’m only subclinical? My frees are generally pretty ok off meds but I don’t feel well then either.

My ferritin is on the up thanks to Three Arrows, not optimal but not awful. My other nutrients are in a good place now.

Think I can rule out adrenals so I’m just curious what I should be looking at next?

I feel one important factor to me is… I have PCOS and have never had a proper period. TMI but I bled for a day when I was 15 and then nothing happened at all and I was just put on the pill for over a decade at 17. I stopped it a few times (for 6-8 months each time) and still had no periods and just felt awful.

I’ve been off of it for nearly 5 weeks now and the same thing is happening.

• I suppose my question is, can a sex hormone deficiency skew or impair thyroid function?

•I’m particularly wondering about a progesterone deficiency which I read is common w PCOS?

Appreciate this is super niche but keen to hear thoughts! It really feels to me like something else is causing my high Tsh.

Thanks

GTS

*Recent bloods*

serum b12: 1102 (197-771)

ferritin: 56 (13-150)

folate: 14 (3-20)

vit d: 114

TSH: 8.52 (0.27-4.2)

FT4: 16.8 (11-21.2)

No ft3 reading.

Note: I know my Tsh is bad but I absolutely cannot tolerate the thyroid medications and feel crap but no where near as crap as when o take the thyroid meds.

[HealthStarDust]

Think I can rule out adrenals so I’m just curious what I should be looking at next?

Seeing as you brought up your sex hormones, I think you’ve answered your own question.

Here’s the thing, sadly, some people can’t tolerate any hormone replacement so stop taking it.

The only other thing I can think of is perhaps you can trial NDT.

[Hidden in reply to HealthStarDust]

Hello, thank you for your reply!

Yeah I’m wondering if the NDT is worth a go, I’ve kinda been putting off trying it because of the cost but feel like I’m kinda exhausting all my other options!

[Hidden in reply to HealthStarDust]

Oh one more thing I forgot, what I find the absolute weirdest is that off meds my frees are fine?

Ft4 always 16-17.8ish and my ft3 is always around 5 or just over…. so I almost feel like thyroid meds pushing my numbers up too much is what makes me feel awful…but then I don’t get why my TSH is currently screaming at 8!? 🤦‍♀️ it just doesn’t feel clear cut to me.

[HealthStarDust in reply to Hidden]

With it being so unreliable, perhaps just ignore the TSH if your frees look good, which they absolutely do. But, I don’t know. Maybe your frees are good because your pituitary is demanding more output from the thyroid.

But, I suppose you would not be exploring what is wrong with your health if you felt good enough without thyroid replacement/medication.

[FallingInReverse]

Also why did you rule out adrenals? I missed that part!

[Hidden in reply to FallingInReverse]

Hey! Thanks for your reply- I figured due to

my symptoms my cortisol would be through the floor…but based on my saliva and blood results it’s just a tad wonky it seems? So I guess to me that doesn’t align with the severity of my symptoms.

So then I got lost down a rabbit hole reading about how progesterone is needed for good cortisol and thyroid hormone production….and how since my teens my sex hormones have never ever been right 🤔

It hard untangling this big mess of hormones😅

[FallingInReverse in reply to Hidden]

Yeah, those details about your period are glaring!

The only random thought I had when pondering your cortisol was the idea of “emerging” adrenal issues. Like, your cortisol wasn’t on the floor but also it wasn’t normal, but maybe it was in flux , and on its way to more dysfunction. But I see what you mean about it not matching the severity of the symptoms.

Keep posting with your updates. Lots of deep thinking to do!

[Hidden in reply to FallingInReverse]

I feel like they are a humongous glaring red flag, that’s just been completely

glossed over by shoving me on the pill. My mum would literally drag me to the doctors week in and week out when I was teen because she was concerned…and they just kept brushing her off and dismissing her. Then the pill was pitched to me as a ‘fix all’ so I took and felt really well for a bit until this slow decline of symptoms began.

I am always told that it can take a while for periods to return after stopping the pill….but what about if you never had periods to begin with!? 🤦‍♀️ I don’t think a single day of light bleeding when I was a teen even really counts!?

Yeah I think you’re right w the adrenals too, I haven’t completely dismissed it and am doing my adrenal cocktails etc but it seems like there’s a primary driver of all these wonky hormone issues somewhere and I’m defintrly suspecting pituitary or sex hormones…it’s just trying to find a doctor that gives enough of a damn to help me get well.

[Hidden in reply to FallingInReverse]

PS I owe you huge thanks for advising me on Three Arrows dosing the other month! I’m due an iron panel asap but my ferritin hasn’t been this good for years!! I know it’s still not optimal but it feels good to get it up a bit!

[SlowDragon Administrator]

Have you had oestrogen, progesterone and testosterone levels tested

Buddy195 has info on sex hormone specialist

[Hidden in reply to SlowDragon]

Thanks SlowDragon, I’m headed out to get tests for all of those today.👍

[Hedgeree]

Hi GreenTealSeal,

Have you tried starting on a very tiny 'dose' of hormones? I struggled to tolerate Levothyroxine when I was first prescribed it, I think due to having very low, bottom and below range FT4 for many years prior.

As I'd been prescribed 25mcg I was able to break it up into tiny pieces approximately 4/5mcg and took that tiny dose everyday and gradually titrated upwards. It's taken 18 months to get up to 75mcg.

May be worth a try if you've not done so already?

[Hidden in reply to Hedgeree]

Hello!

Thanks for your reply, yes I have tried this too but the issues remain no matter how slowly I build up the dose. They just get worse and worse with each increase unfortunately

[Buddy195 Administrator]

Regarding sex hormones , it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.

healthunlocked.com/redirect...

[Hidden in reply to Buddy195]

Thank you for sharing. I am 32 so not in need of HRT quite yet, would it still be useful for managing PCOS?

I’ve been reading a fair bit about micronised progesterone helping w PCOS so hoping my test results show this would be a good try!

[Buddy195 Administrator in reply to Hidden]

I think the Newsom app is useful for all women; it allows you to track symptoms etc. sorry, I’m not knowledgeable about PCOS

[Hidden in reply to Buddy195]

Thanks Buddy! I will check it out

[sparkly]

Hi, not sure your age but could perimenopause be playing part especially seeing as you have pcos. I know for myself perimenopause played havoc and having been on steady ish thyroid regime for a couple of years it was then thrown into turmoil and my body didn't respond to my medication and I way dreadful. Once on the right hrt regime I was able to resume my thyroid medication.

[Hidden in reply to sparkly]

Hi thanks for your reply.

I am 32 so not meno. I had tests to rule out early meno!

I’m more concerned that there’s some severe sex hormone imbalance as I have literally never had a normal period or cycle (GP’s never gave a hoot and just put me on the pill which makes me so sad and mad!)

It certainly feel like this needs to be corrected before even starting to treat thyroid but looking at my TSH I feel time is of the essence a bit! 😬

[sparkly in reply to Hidden]

You could ask gp to test testosterone, prolactin and shbg as these are usually off keel with pcos but not sure how the pill interacts with them. Does the pill mask most pcos symptoms? I love progesterone by the way. Great sleeping aid and calming effect on a lot of ladies.

[Hidden in reply to sparkly]

Interesting to now re-progesterone! I’ve read loads about the micronised one helping with PCOS so going to enquire with GP because I am so done with the contraceptive pill.

Yeah so for me the pill resolves all my PCOS symptoms and I end up going batsh*t around 3 months off it because my hormones just seem to go wild. Been off it 5 weeks so feeling like a bit of ticking time bomb rn 😅

So last year on the contraceptive pill and thyroid meds my

Prolactin and SHBG were very high.Prolactin 1500 (upper range limit was 500) and my SHBG was 200> so through the roof.

Since stopping the pill and thyroid med my prolactin is still high but coming down now at 600.

I’ve had hormone tests today that inc. testosterone and progesterone and all that jazz so hoping it will shed some light! 🤞

[sparkly in reply to Hidden]

Are you under an endo? An endo with sex hormone knowledge deals can deal with pcos along with thyroid. Perhaps find out if any local ones have interest in both as most are just diabetic treaters. I had to go private when I was going through it all. My nhs endo is great thyroid wise but didn't have sex hormone knowledge. I saw a private endocrinologist who unbeknown to me was a menopause specialist too. She knew straight away i was perimenopause and that my sex hormones were causing issues with my thyroid medication. Took a while to sort things out but that person saved me as I was in a real mess. Also to mention if having sex hormones bloods privately always opt for venous drawn as finger prick can be unreliable and can give very high false reading especially oestradiol and testosterone.

[Hidden in reply to sparkly]

Nope, no one has referred me to an endo. I’m just wrangling w the GP for the last year.

I have a follow up so will insist we refer to endo now because it’s just getting silly now and this is clearly beyond a GP’s (very limited) knowledge!

I’ve been searching for an endo to see privately for some time but it’s so hard to know who’s worth the money and who isn’t!?

[sparkly in reply to Hidden]

I can message you with details but they are based in the North West.

[Hidden in reply to sparkly]

Ah thank you but I am based in London so not sure it would be useful. I’ve tried looking at the thyroid uk endo list but then when I ask here there either very negative or mixed reviews 😬

[sparkly in reply to Hidden]

I've messaged you

[Hidden in reply to sparkly]

👍

[J972 in reply to sparkly]

Do they see people via Teams/remotely?

[Hidden in reply to J972]

Yes, they do zoom consults! If you're interested I can forward on info for you? The only thing that worries me is that there a bit of info on CFS and I'm worried they'd just bin me off with that diagnosis... which i know i don't have

[J972 in reply to Hidden]

Thanks, sparkly has kindly shared.

Not the dreaded CFS! 🫣

[J972 in reply to Hidden]

Just thinking aloud….were you on contraception when you did the saliva test? Or, had you recently come off the pill?

[Hidden in reply to J972]

Please do!

No I stopped it around 3 weeks before doing the saliva test.

It’s tricky to balance all of this because after around 3 months off the pill my mental and physical health completely nose dive. Like I don’t want to say I become psychotic but I can’t think of a better word. Last time I was just asleep all day and night for months on end and when I was awake I was out of my mind with paranoia and anxiety - all SO completely unlike me.

Hoping to get some help before I reach that stage…but doubt NHS will care 🙃

[J972 in reply to Hidden]

Understood. Sounds hideous x

I was asking because I’ve read about how the pill can artificially elevate cortisol. Which *could* explain why your levels were elevated when you were so sure they’d be low. I know there’s a lot of supposition here, just thought it might be worth a consideration. Three weeks mightn’t have been long enough for everything to have cleared out of your system - but I completely understand your reluctance to stop for any longer.

[Hidden in reply to J972]

Yes I have wondered about that too. It definitely muddles the picture but it’s hard to stop it for any length of time, although I’m doing by best to stop it for good now 😬

[DandyButch in reply to Hidden]

Hello GreenTealSealI know you say that you are not perimenopausal and that you have been tested. What was tested?

I had a premature menopause at your age following the birth of my first child. To confirm this I had to be under a gynaecologist, come off all sex hormones for 3 months then be tested for Leutinising Hormone and Follicle Stimulating Hormone.

I knew my own body, doctor said I was too young, but took 7 years to finally get the truth.

Just trying to help in some way.

During that time GP tested Oestrogen and Progesterone which were OK.

I now have hypothyroidism and struggling to get answers, again.

All the best.

[Hidden in reply to DandyButch]

Hello, thank you for your message!

Gah I’m sorry you had such a ghastly time, why do doctors never listen to us about our own bodies!? 🤦‍♀️

So I was last off the pill in 2021. I saw a gyno who suspected early meno, did all the testing and ruled that out. I’d been off the pill for 5 months at that point.

I’m having the same symptoms now as I did back then, plus the delights of low/wonky thyroid so I’m confident it’s not meno related.

I hope not anyway as I would like to have a child sometime soon but feel like hope is fading somewhat these days…

I had just had a thorough hormone panel done today: estrogen, progesterone, SHBG, prolactin, fsh, lh, testosterone and androgens (and probs some other stuff I’m forgetting😆) so hoping that will shed some light!

[arTistapple]

Have you considered it could be a pituitary problem and not thyroid? Somewhere in the back of my mind pituitary can be connected to PCOS and at the same time create similar symptoms to hypo.

[Hidden in reply to arTistapple]

Hello! Thanks for your reply.

I have defo considered this and do worry about it. Especially when you factor in I’ve never had a proper period, like ever. 😬 I went through puberty much later than my peers altho hard to say if this is significant/relevant. I was dragged to gp for years as a teen and was always told ‘you’re fine’ 🙃

I have a follow up w my GP soon so going to mention this and insist I see an endo at the very least to rule a pituitary issue out.

Thanks!

[Sparklingsunshine in reply to Hidden]

I dont know if any of these symptoms ring any bells? mayoclinic.org/diseases-con...

[Hidden in reply to Sparklingsunshine]

Some do tbh. I would definitely like to see an endo to be able to definitively rule this out and make sure my pituitary is okay at the very least.

There is definitely something going on and I definitely feel like thyroid dysfunction isn’t the primary driver in all of this hormonal chaos!

I had no periods aside from one day of bleeding at 15 but then I was just put on the pill and told to stay on….there were never any tests or investigations done until I was 30 years old and that was just a scan to confirm PCOS.

[Sparklingsunshine in reply to Hidden]

Sounds like you need an MRI of your pituitary and a knowledgeable Endo.

[Hidden in reply to Sparklingsunshine]

But where can I find a knowledgable endo, feels a bit like searching for a needle in a haystack😂🤦‍♀️

I had a brain MRI and the arrogant sexist neurologist I saw said everything looked ‘fine, no further action and that these things tend to go away by themselves and if I’m having problems managing my symptoms then I should see a psychiatrist’🙃

But I guess the pituitary is tiny so need a specific MRI for that. Will ask GP!

Thank you!

[Sparklingsunshine in reply to Hidden]

I dont know if this organisation might be of any help pituitary.org.uk/. They might know of specialists who you could be referred to.

[Hidden in reply to Sparklingsunshine]

Thank you! I’ve been reading some bits on there lately funnily enough. It all just seems completely overwhelming to me but will keep reading and learning, thank you!

[arTistapple in reply to Hidden]

I know a bloke with this. He had a pituitary tumour. However it’s years since it was removed and he is very well indeed. He is on ‘lifetime’ meds though. Just the same as if he had hypothyroidism or heart problems. It’s a good thing to be able to shake off “a lifetime of meds” and just get on with it. I have never been entirely comfortable about lifetime on meds but slowly coming around to it.

[Hidden in reply to arTistapple]

That’s interesting. It’s definitely something I would like to rule out.

It’s mad I’ve just been left to my own devices for years and just told to go on the pill with absolutely no testing. It’s almost laughable really.

[arTistapple in reply to Hidden]

Hate to say it but ‘join the club’ GreenTeal Seal. I don’t know if there was ever a time patients were properly treated for anything. It seems it’s all in our hands theses days. It’s only those of us who push things along who get anything done at all. As I am in the older bracket, I find that at social gatherings our health (or lack of it) is the central topic. However I continue to be amazed at the number of people who don’t do anything about it. A presumption that doctor knows best. Huh!

That sounded like I have a social life. That’s a bit over stated. I see my children’s in-laws from time to time. We are all in the same age bracket. I am the only one who challenges fines etc too. I can’t help it. I hate injustice. It makes me speechless. Until it doesn’t.