Did anyone find that their thyroid function improved after addressing hormone imbalance issues via HRT?
My NHS endo has suggested trialling HRT. Im only 33 but my female hormones have never worked properly. My estrogen doesn’t fluctuate and stays low in range, progesterone is low, my endometrial lining never thickens and I’ve never had a period (unless I’m on contraception, which oddly seems to HELP my thyroid function!?) every thing gets so much worse when contraception is stopped and things are less awful symptom wise on it.
She also unhelpfully suggested I don’t need thyroxine yet and that if it’s causing such an aggressive allergic reaction to stop it and wait till TSH is over 10… however I will still have this aggressive reaction to thyroid meds at TSH 10 so that doesn’t seem to solve much? Plus I have hypo symptoms now at tsh7-8 so that doesn’t really resolve anything…?
I’m convinced that levo/lio combo and mono (any brand, liquid or pills, tried almost all!!) are spiking my histamine levels and then over time causing constantly sky high histamine levels and aggressive allergy symptoms. Which are then exacerbated every time I eat…this issue persist off of thyroxine but is much much much milder.
(Link shows Thyroxine treated rats have much higher histamine levels)
Weirdly when I stop thyroxine, the week after stopping it I feel like I get the benefit of it and feel pretty good as my histamine levels falls I can convert better (high histamine levels inhibit t4-t3 conversion) as well but obvs this tapers off after a short while.
I have trialled a low histamine diet but this makes little to difference as it seems the levo itself is what’s making histamine spike…also tried many antihistamines but still I react within an hour of taking thyroid meds (pics in comments but will probs delete later for anonymity) since taking thyroid meds last year I have also developed ‘allergic shiners’ which have never gone away.
I’m very hopeful if I can get on the right amount of estrogen and micronised progesterone this will help me hugely (micronised P is supposedly great at calming mast cells and helping manage histamine levels. I had some benefit with this when I trialed Utrogestan off of the pill but obvs it did nothing for my low estrogen symptoms)I’ve only been subclinical hypo the last 2 years but hormones issues started in teens so hopeful addressing this will help thyroid.
Not really sure what the point of posting all this here is. Just at all time low really and hoping my experience will hopefully be relatable to someone else feeling as hopeless as me. (Unlikely tho as I’ve never encountered any other woman whose hormones just do completely nothing by themselves and have never had a period)
Oh well. Grateful for any HRT insight anyway…
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My situation is not the same as yours so my experience might not apply at all.
For me, it was the other way around. My hormones were jumping all over and I was constantly changing my hrt doses. The better my thyroid levels have been, the more stable my estrogen has been.
It almost seems like I am completely back to front. My females hormones have always been low…even when Tsh was well under 2 for decades!
My bloods on levo are bizarre too almost ike it makes me more hypo (sends prolactin sky high and testosterone too low!) then my bloods also suggest over replacement with a SHBG so high it can’t be read at 200+++ …this all normalises when levo is stopped.
Jamima posted this recently, unfortunately it coincided with the Panorama documentary about Louise Newson so, disappointingly, the post was closed. You’ve probably already come across this through your extensive research, but, if you Google Louise Newson Thyroid, you’ll get quite a few results. I was also reading or watching something the other day and there was mention about thyroid hormones normalising once sex hormones were ‘stabilised’ (if that’s the right word?) so I’ll have some more coffee and have a ponder.
I’m not sure if this is what I’m thinking of but I’ve been watching Felice Gersh’s YouTube videos recently - here’s some links which might be of interest:
Oh thank you!! Yes I think I’ve read and watched some of her stuff too! Will check out these vids in a bit!
Thankyou so much. You’ve made me feel like I’m not completely mental to have some hope in HRT.
I’ve been on the contraceptive pill on/off for a long time and it’s kinda helps but apparently body identical hrt os better and has less side effects and more health benefits 🤞🤞🤞
Thank you for sharing! I’ve just gone and found her post and it certainly gives me a little glimmer of hope!
Hormones are supposed to fluctuate but mine have never done so it appears. I took a year off contraception (and was so physically and mentally unwell I couldn’t work or do much of anything) but my hormones were monitored and constantly were low/low in range and did nothing 🤦♀️
I have also watched the channel 4 documentary and felt so sad for the women affected. For me the benefits of any kind of hormone far outweighs the risks so I’m hoping to trial it soon and then perhaps in time my thyroid will settle!🤞
I’m not hashis and the guy who did my thyroid ultrasound said it was ‘pristine’ 😂
Really good question. I think it’s worth pursuing, after all, they have so many practitioners working for them these days that there’s bound to be someone amongst them who’s had relevant experience. At least you’d hope that they would.
Haven’t used them *yet* although it’s something I’d consider. Just getting some ducks in a row, as it were.
It might even be worth creating a separate post regarding this, you never know….
Good idea! I’m gonna drop them a line tomorrow and report back!
I’ve read a few studies that suggest that PCOS and the hormone balance it can induce can feel similar to peri menopause and that’s totally
Me when I’m not taking any hormones! So you’d hope they could advise!?
My endo was keen to tell me that HRT is not just for the menopause these days and it is used for all kinds of female hormone problems…which I hadn’t hear before but willing to give it a go!
Hello - I've had consultations with the Newson clinic. My Hashimoto's got much worse when I reached menopause (I was untreated before). I started HRT (from GP) and after a lengthy battle I started Levothyroxine. I tried a lot of different HRT because of side effects (this was a few years ago and my GP was still prescribing the old synthetic combination oestrogen and progesterone pill). After a few years I consulted Newson clinic about HRT and was switched to transdermal body identical oestrogen and micronised progesterone (Utrogestan). This felt much better, fewer side effects and my sex hormone level test results were much better. I was still struggling with fatigue and other thyroid symptoms and from posting private test results on this forum I found out that I wasn't converting very well to T3. My GP refused to test anything other than TSH and said I could only have Levothyroxine. I gave up arguing when my GP said "There's nothing medically wrong with you". When I had my next Newson health consultation she said they would test all my thyroid hormones as well as sex hormones. After the test results came through she said my thyroid hormone results were normal because they were in the normal range. I found this very annoying because they are very keen that your sex hormone levels are optimal not just normal but this didn't apply to thyroid hormones. I knew that my T3 was too low despite being normal. I then consulted a private thyroid doctor who prescribed Armour NDT which is much better for me.
The shorter answer is Newson health will look at other things such as thyroid hormones but depending on which doctor you see they might not have a brilliant understanding of the thyroid.
The thyroid doctor I see also tests sex hormones as well as thyroid hormones (and cortisol) because they all interact.
My gp agreed to prescribe the HRT that Newson health suggested but they won't prescribe NDT.
I found it really difficult to untangle what was thyroid and what was menopause, I hope you can get some good treatment soon.
Thank you for reply and sharing your experience! I know the feeling of giving up arguing with GP, it’s hopeless isn’t it!
Great to hear Newson were good on female hormones!! Not surprised they aren’t great on thyroid but I feel confident managing that aspect myself and am hopeful that addressing my long term hormone imbalance will help my thyroid function too.
I think we maybe seen the same private thyroid doctor possibly, based on what you’ve said. I have to be honest that I didn’t find her advice very helpful in my particular case. (I was advised to withdraw all contraception and female hormones and just stick with thyroid medication which left me severely unwell…and surprise surprise I still continued to never have a period!) I unfortunately don’t think it was taken seriously how poor my female hormone function is sadly and the follow up appointment was so short we didn’t have time to get into all the facts (no thickening of endometrial lining off contraception, even after 12 months & low progesterone/lowish estrogen & never had a natural period, even when euthyroid!) so not sure this was the best advice for me. 😬 I may well try going back to her in future so we can discuss in detail but o absolutely need to supplement progesterone and estrogen for my body to function!
However NDT is defo rely on my list of things to try further down the line. Reassuring to hear it’s working well for you!
I'm not sure if we see the same thyroid doctor, mine has been helpful on female hormones and has tested them too. If you want her name to check then send me a pm. I'm sorry to hear you've been having a difficult time, I know how it feels when you don't seem to be able to get everything treated optimally. Hope things improve soon.
Will pm you! Mine was nice and tested my hormones too but since I was on the pill it didn't show much and we didn't really touch on my abysmal hormone results when I'm not taking it. I feel like because I'm 33 female hormones weren't paid much attention to!
GreenTealSeal_ Have you had your early morning cortisol and DHEA levels checked? (You would have to be off HRT and oral contraceptives for 6 weeks before doing an early morning cortisol test, as well as avoiding steroid-based inhalers, tablets etc prior to the test on the day and ideally the afternoon before).
I did yes, earlier this year and cortisol was deemed normal. I also suspected adrenals for a long long time and my endo suspected late onset adrenal hyperplasia but it doesn’t look as likely now.
It defo seems like some kind of aggressive histamine issue that just makes me feel like I’m allergic to everything!
Edit: haven’t had DHEAS checked ever I don’t think but I’m guessing they’d be high as I have polycystic ovaries
GreenTealSeal_ Do you know the numeric result of your cortisol blood test? Were you off HRT and oral contraceptives for 6 weeks before the test?
Cortisol levels impact the immune system, allergic response mechanism etc., along with all sorts of other things. Changes to HRT and oral contraceptives impact cortisol levels, so you could see changes when you start/stop HRT or OCPs. Adrenal issues can result in lower levels of DHEA, which particularly in females affect sex hormones. Personally (as a male), when I developed adrenal insufficiency and subsequently started taking hydrocortisone to manage it, I found that I had to increase my thyroid medication, increase my antihistamine use, and take DHEA (even though it is thought less significant in males). Adrenal issues are deemed a rare condition (about 9000 cases of primary adrenal insufficiency in the UK, thought to be about double that for secondary adrenal insufficiency, and an unknown number with tertiary adrenal insufficiency). As a result, doctors (both GPs and endo's) are even less on-the-ball about adrenal insufficiency than for thyroid issues, so always check the numbers from blood tests yourself and double-check everything they tell you about adrenals, cortisol etc. There are first-hand reports in adrenal groups online pretty much every day about doctors getting it wrong.
[Edit: TBH, that fact that your endo mentioned late onset adrenal hyperplasia suggests that he/she is more clued up than most]
I’ll have to dig it out but I remember it was an am cortisol test and was around 360. So it was done 5.5weeks off contraceptive pill because I could not manage any longer sadly (I’m already a hair away from losing my job and can’t take 6 weeks off so it’s an impossible situation) however I did do saliva cortisol which can be done after 2 weeks off the pill and my am result was very normal!
She is clued up and helpful but very very very slow at actually organising anything which is so frustrating.
Thank you for the Facebook link too, I’ll join and have a read through later!
The other super weird thing is…I’ve seen 3 endos now and all delight in telling me I don’t classically fit the picture for PCOS….and yet I still seem to have an extreme version of it?
So I don’t have insulin resistance, I don’t struggle with my weight and if anything I struggle to not be underweight. I don’t have excessive unwanted hair growth. I don’t have high estrogen or irregular periods.
They have also tried loads of PCOS treatments and none of them have worked so far (provera cycles, inositol, metformin) which has them a bit confused. I feel like low estrogen is a big part of my puzzle here.
GreenTealSeal_ Just seen your edit about polycystic ovaries. I suggest posting in the Facebook group at facebook.com/groups/1759489... asking about any links between polycystic ovaries and endocrine issues, particularly cortisol and DHEA. The majority of members there are female, and may be able to offer advice.
Have you come across any research or compelling anecdotal evidence during the course of your time on various Addison’s/AI forums/reading to suggest that transdermal oestrogen affects serum cortisol levels? I’ve read what I can on the subject and the suggestion is that we only need to worry about oral oestrogen. But I’m bothered by the paucity and scope of research into this. My most recent cortisol blood test (last month) gave a reading of 313. Last December is was 381. Both tests done just before 9am. I’m on transdermal HRT. GP has referred me to endochronology but I’m not holding my breath. Saliva cortisol tests conducted a year ago showed low cortisol throughout the day and below range DHEA.
Apologies for hijacking your post GreenTealSeal_ but hopefully it’s relevant. 😊
The National Institute for Health and Care Excellence "Adrenal insufficiency: identification and management Evidence review D: Diagnostic tests and diagnostic thresholds for referral" document says that transdermal preparations have "less effect on the circulating cortisol-binding globin levels", but despite the name of the document does not provide any evidence, nor any indication as to how much less effect they have (they definitely don't say no effect).
I have recently seen another document that compares the effects of different entry routes for steroids, but for the life of me cannot remember where at the moment. If I come across that one again, I'll update here if there is any relevant information in it.
For anecdotal information, the question was asked again yesterday in the Facebook group that I mentioned previously. See facebook.com/groups/1759489...
Nancy, who responded on that thread, is one of the most regular respondents in the group and has helped lots of people. IMHO, she has repeatedly demonstrated very good knowledge on adrenal insufficiency and reports her cortisol levels when on and off Oestrogel (HRT gel) in that FB thread. The different is significant. In the period since I was diagnosed with adrenal insufficiency, I have read many anecdotal reports of patches making a difference, although Nancy's is one of the largest differences that I have seen reported.
J972 Not explicitly HRT patches, and it's not the report that I was thinking of, but for info - the Society of Endocrinology, in combination with the NHS and others, report on topical glucocorticoid creams and ointments at endocrinology.org/media/409...
The NHS guideline for adrenal testing at my local hospital say the same…that transdermal hrt or transdermal contraception are not an issue and will not interfere with a Synacthen.
I was actually told to try EVRA the contraceptive patch for 6 weeks so we could do a Synacthen but it causes horrific side effects and never seemed to settle so I gave up praying hrt is better cos it’s not synthetic like contraception!
It’s apparently only if estrogen goes through your digestion that it affect cortisol levels and also thyroid binding globulin levels…but I’m not entirely convinced it’s 100% correct 🤷♀️
J972 GreenTealSeal_ I'm due an SST in 6 weeks...just about to take off my HRT patch today 😖 I've read conflicting information about whether transdermal affects results or not, but as JumpJiving said, the Addison's FB group has several members who it did affect their results considerably so I'm going to come off it to be sure. I spoke with an endocrine nurse at the Pituitary Foundation and at her hospital (don't know the name), which is an Endocrine Centre of Excellence, they take saliva samples alongside the blood samples during the SST for those on ANY form of oestrogen to be able to compare and not force the person off their meds. They do believe it can, for some, affect the results. My hospital do not do this and say transdermal is fine.
No worries, I've been meaning to catch up with you and GTS! I wish I had spoken to the Pituitary Foundation earlier, I would have then known to ask my GP for a referral to a Centre of Excellence, oh well too late. Good luck to you too!
Thank you for sharing Bertie! I hope your test goes well and you can manage without your patches!
It’s a struggle for me as I can’t really go cold turkey for 6 weeks…it’s a complete misery! But don’t let that put you off as my hormones have always been non-functioning/wonky!
No, I realised after posting and then familiarised myself again with your situation that coming off hormones affects you so badly. Clearly they have been wonky all your adult life and I'm sorry no one helped you with them before ☹️ I hope once you're stabilised on body identical HRT you will get some benefit and then maybe the thyroid piece of the puzzle will fall into place. HRT does take some time to adjust to. You do need to start low and then slowly raise over a few months. Don't be tempted to jump in at a high dose as you can get unwanted side effects. You probably know this!
The advice is 3 months, then reassess symptoms before increasing. 2 pumps is a moderate dose. I started on 1 pump. Then after 3 months went to a 50mg patch (equivalent to 2 pumps gel) and then 3 months later went to a 75mg patch which I've settled on. This is the dose that's got rid of the night sweats but only 25mg got rid of the hot flushes. It's not perfect, as I'm in perimenopuase and still cycling, albeit it was getting more and more irregular, some months I get a PMS breast pain that's quite intense. I suspect those months I'm making plenty of my own oestrogen and so end up over replaced on the 75mg patch. As you seem to not be in that situation it may be easier to find your 'sweet spot' dose. Just don't be tempted to play around with amounts, it's a case of waiting a while to see how you feel before increasing...a bit like thyroid meds.
Ah ok thank you! I must admit my patience has grown very thin over the last few years but defo need to persevere.
I’ve read in a few articles places that sometimes younger women need a higher dose but I’m hopeful Atleast taking some will help! I do wonder if patches may suit me better long term as gel is so messy!😬
Thank you for sharing your experience, it’s really interesting to hear and glad you e found your sweet spot! My estrogen just kinda sits low in range and does nothing so I’m hopeful it’ll be clear when I’ve reached my correct dose I’m hopeful it may be a bit easier for me as I’ve never had a cycle. Fingers crossed!
I think HRT is worth a go in your situation. I use patches but I have friends who do the oestrogen gel which gives you more control over how much you apply.
I started HRT before thyroid meds. It had no impact on my thyroid hormones. I felt a nice little uplift in mood and less stressed.
PS we don’t need to stop taking HRT to do cortisol saliva testing. There’s instructions in the test kit and you do the test halfway between patches/dose, within certain cycle days (if still having periods).
Thank you for replying! Yeah I think it certainly can’t do any harm to try and yes I would be taking it cyclically to still have periods.
I did do a saliva cortisol test before. My results were bizarre as they were perfect in waking and then after taking t3 throughout the day it absolutely sky rocketed and I felt severely unwell. Thyroid meds seem to spike my histamine and cause allergy reactions so I believe that’s what was happening then. Also apparently histamine raises cortisol which is interesting!
Hi GST, I've had a complex situation with thyroid and sex hormones. My thyroid situation is complex, so no surprise that sex hormones would also cause havoc too.I was doing OK on t3 only, single largish dose then suddenly no matter whether I upped, downed or stopped t3 nothing was working. It was like I wasn't on any medication and was back to being really ill. I was housebound, bedbound, chronic fatigue and unable to function.
Thankfully I found I private endocrinologist who I have chatted to you about on private chat. They knew straight away I perimenopause and this was playing havoc with my thyroid situation.
Yes, seeing as you've tried all other avenues and nothing is helping then hrt might be the answer. At 33 you are unlikely to be in perimenopause but definitely your hormones are the reason.
You obviously have very complex hormones issues. Whether you start hrt continuous or cyclical is something you'll need to discuss with specialist. I was started continuous even though I was still having periods. My periods stopped straightaway along with all the pms malarkey.
Me personally, i would recommend starting on oestrogel and utrogestan. Much easier and quicker to control and alter doses than patches.
It would be trial and error to what suits your body of course. Took me 9 months of trialling different forms but settled on the above and been on ever since. Also now on testosterone which was life changing for me.
Thyroid and sex hormones have a connection and both need to be balanced. Lots of ladies once hitting perimenopause/menopause then start with thyroid issues. Problem with this, symptoms of thyroid and peri/menopause overlap so either they don't realise and blame it on being peri or GP will dismiss saying it's peri. Both obviously need addressing. Goes the other way too, ladies will blame their thyroid when it could be peri/menopause causing the issues..like i did.
Hormones..they are bain of our lives.
Also funny you show photos of your eyes. I too suffer with red, sore inside corners of my eye lids when I feel my T3 levels are low, also have terrible dry hands and lips. Don't know for sure this is connected but if I've increased my dose the rash disappears and other issues not as bad.
Yeah I contacted her the other month but was sad that she wasn’t taking on new patients. They did reccomend another clinic to me in London which I intend to reach out too. T3 causes the same allergy reaction sadly and if anything it even more potent and severe
Yeah I appreciate it’s an incredibly unusual situation. Nhs endo who suggested HRT could see I was perplexed and explained it to me well but now she’s gone awol for 3 weeks and not responding…and I could wait but it’s been years of hell and I’d rather just get on with it tbh!!
I was a happy and healthy child and then as soon as I went into puberty…and never had any periods…these issues have continued to amass over the years. I’m defo not meno but I definitely have low prog. having never ovulated or had periods and my estrogen whilst in range is arguably low for a ‘fertile woman’ plus combined with my symptoms off contraception and the fact my endometria lining never thickens even after 12 months off the pill (which was a living hell I do not wish to repeat) I think that all makes a pretty good case for trialling some hrt
I’m hoping body identical HRT will actually help my body do its thing! Synthetic hormones help somewhat but obvs they don’t have the same health benefits and o haven’t needed contraception for years but I can’t function without it and my hypo symptoms worsen too it’s a misery!
I read a bunch of studies on micronised progesterone having a calming affect on histamine levels and up regulating DAO production so I’m hopeful this will take the histamine issue somewhat but it certainly needs to be balance with some estrogen as I don’t make enough by myself. I do actually wonder if taking synthetic progestogen for years has got me where I am now but I wasn’t offered any other option which is sad and frustrating.
I was brushed off by my GP for years regarding never having had a natural period. I was never referred anyway and no investigation was done. Until over ten years later when I saw someone privately who was horrified that no one had investigated.
I also worry about my bone health but that’s a different kettle of fish.
I think correcting my hormone levels thru HRT is a good starting point and then I can monitor thyroid and trial medication again when the rest of my hormones are actually functioning 😬
Endo said it was up to if I wanted to take her cyclically or continuously…I was thinking initially to try continuously and then go from there 🤞
OK, I believe the pill masks symptoms. My friend has just found this out after being on it for years. Had to stop it recently and thrown straight into perimenopause. I too recommend the specialist and yes, sadly not taking on new patients. She has a whole host of issues found accidentally and has now gone on continuous oestrogel and utrogestan. I found a menopause specialist with interest in thyroid and adrenal issues along with other related issues. I will message you if you want. I can't vouch for them but you could look them up.
Yes I absolutely love utrogestan. I now sleep 7/8/9 hours. I take it about 7pm and by 10 I'm knocked out cold due to the welcomed sedative effect. Also once I started on 200mg I noticed the calming effect if had. Can't live without my utrogestan.
Do be aware that you can still get pregnant whilst on hrt if that was something you'd thought about.
Hrt is not only to eliveate symptoms but is to protect our bone heart and brain health. I'm never coming off the bugger!
I would plump for continuous if you don't want a forced bleed every month. It's not a period just a shedding.
I don't know anything about histamine response. I can not take antihistamines or I'm
Knocked out cold.
Yes I'm on 200mg utrogestan due to being on 6 pumps of estrogel. I need above licenced dose to relieve symptoms. Some ladies do progesterone therapy only and on large doses. This isn't usually prescribed within the nhs, more of an alternative treatment.
Yeah I think progesterone therapy is a valid option and something I looked into but it can rank your estrogen if it’s already on the low side and make things worse 😬
I defo need some balance between the two!
Ah that’s so strange about antihistamine for you! They don’t really touch the sides for me sadly in terms of calming my reaction.
I agree the pill is like a sticking plaster really but it was the only option I was given until recently I’ve tried to stop it so many times and without any hormone at all I’m so so ill (I often say it’s like a combo of meno symptoms and puberty symptoms combined!) and then there’s the effects on my emotional well being too. I lose all motivation, enthusiasm and joy for life . I have the worst memeory and make so many mistakes at work…the pill revolves all that but is obvs only doing a partial job!
I’ll defo keep posting updates here too. I couldn’t sleep this morning because I felt so hopeless that this would never ever get sorted and I’d die never knowing what was wrong or how to fix it and don’t want other people to feel like that!!
This thread has given me hope that HRT at the very least is a step in the right direction ❤️
But just to say the redness and allergy issues actually get worse for me the higher the t4 or t3 dose which again seems completely back to front.
I feel like potentially the spike in histamine from taking thyroid meds completely stops it working. Which is why I’m hoping moving from progestogen to micronised progesterone might make life easier 🤞
I've tried patches and gel. For me, patches are much less fuss! Change twice week, don't feel them at all. Whereas the gel is super cold to rub in in the winter and if you're thin you run out of space to put it if you need more than 2 pumps. I started on the gel thinking it would be easier but I was wrong...that's me though and you can try one and then change to another if you like.
sorry to bombard you but one other question if I may….what does of utrogestan do you take? I’ve heard 200mg is the max dose but some take more.
I have PCOS so make buckets of testosterone so don’t need to worry about that 😂 I’m actually hoping getting estrogen levels up will help to control this better.🤞🤞🤞
Starting HRT didn’t help my thyroid function coz I don’t have a thyroid 😬, but I’m convinced it helped my thyroid hormone replacement meds work better.
After being cold & tired my whole life I was finally diagnosed aged 49 with Hashi in 2011 but Levo mono-therapy made me very ill. Adding T3 meds in 2015 helped enormously but I still had some ongoing residual symptoms. Endo suggested HRT but I harboured this romantic notion I was going to see the menopause through with herbal teas and deep breathing 🙄. After another year of debilitating hot flushes, etc, I submitted to HRT and haven’t looked back. I absolutely love it and am a big HRT advocate now!
All hormones work together even if indirectly. My issues, a life of menorrhagia and pelvic pain pre-menopause were different to yours. The duration of my unrecognised hypo symptoms complicated with menopause meant the reversal was complex and took several years. My cortisol/DHEA eventually ‘normalised’ after five years on combo thyroid meds and HRT, and my more unusual and ‘weird’ symptoms that I associated with low grade MCAS finally disappeared. I fully believe having all hormones replaced assisted in the process on multiple levels.
In your case a high TSH is known to encourage higher levels of prolactin which in turn often suppresses production of oestrogen and progesterone. Elevated testosterone is a classic symptom of PCOS. If a lack of thyroid antibodies and a healthy scan result eliminate Hashi, you must have some sort of a pituitary/hypothalamus/thyroid signaling issue to have consistently low thyroid hormones. Ironically for you thyroid hormones also have direct influence on cells of both the innate and adaptive immune systems.
Usually the hypothalamus releases GnRH to stimulate FSH and LH that coordinates production of oestrogen and progesterone, and a healthy ovulation. Progesterone then works with GnRH in a negative feedback on the hypothalamus creating the monthly cycle.
Hypothalamus sensitivities/genetics can result in excess GnRH pulses creating elevated LH and androgen excess. Anovulation causes a deficiency in progesterone and I have read of successful PCOS management with progesterone replacement taken cyclically.
Progesterone is known for its calming effects and the oestrogens are highly implicated within the immune system having both pro and anti-inflammatory effects depending on involved tissue and health state. But they are known to help with chronic inflammation so may help calm your intolerances/reactions to thyroid meds. These hormones are also required for things like maintaining bone health and muscle strength, regulating good mood and preserving brain/cognitive function, etc, so it could be damaging you’ve been left deficient for so long.
Also have you tried supplementing myo-inositol? Research shows it helps with poor TSH signalling (which is inositol-dependent). Also a high concentration of myo-inositol is required for healthy egg maturation in the ovary, and is helpful in controlling the high insulin/insulin resistance seen in PCOS which contributes to higher GnRH levels (making it self-driving).
Some people prefer a myo-inositol and D-chiro-inositol combination. There are some members who have used it so write a new post to invite their experiences, and research Isabella Wentz who although is known for her good management of Hashi also successfully managed her PCOS, and went on to conceive and produce a healthy baby.
I have tried inositol and it doesn’t do anything for me sadly I am also not convinced I have any issues with insulin resistance so I wonder if this is why it isn’t helpful.
Also oddly it’s only TSH that is raised and it’s not peristnetly high. It’s up and down all over the place but t4 levels remain much the same as they always have, even when euthyroid. I know Tsh can be an inflammation marker and so I wonder if the flare ups of symptoms, inflammation are causing Tsh to be too high as it will downgrade t4-t3 conversion. Exacerbated by the fact I have never made enough E or P to help manage or calm inflammation.
I can certainly rule out hypothyroidism and high Tsh as cause for the low E&P as this has been an issue since my teens, back when Tsh was well under 2!
Also bizarrely my prolactin is normal. It is only very high when taking thyroid medications (combo or mono of any t4/t3) it always returns to midrange normal when thyroid medications are stopped so I don’t feel like prolactin is impacting my other hormones or causing the loss of periods. Canulated prolactin levels were completely normal too after 6+weeks off thyroid meds and back up to 1000+ when the meds were restarted.
Because my estrogen is lowish I worry utrogestan alone will lower this further. In ‘21 I did some cycles of provera and altho it’s not the same Progesterone/progestogen alone do not produce a bleed for me. I presume because my endometrial lining never thickens. I have also trialled metformin with no success. (It gave me hypoglycaemia!)
PCOS and hypo are common to occur together but what puzzles me is that so many of my issues don’t seem to align with either condition. Endo has said I don’t classically fit the picture for PCOS so is puzzled.
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