Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: CrispyChick on May 12, 2025, 08:54:30 AM
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Hi
I know I had a discussion with a few folks on another thread. But can't recall which one.
So here are my latest results and ranges, if someone in the thyroid 'know' could comment.
To recap I feel hideously poisoned and ill every day. Also contact flu like symptoms and cold all this time. Unless having a hot flush.
TSH - 0.81. Range 0.23 - 5.6 mu/L
Free T4 - 16. Range 9-28 pmol/L
Free T3 - 3.4. Range 3.1-6.8 pmol/L
I should add, this is similar to all my previous tests and when I've had antibodies tested, there's never been any issue.
Many thanks. X
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Have you ever had rt3 tested?
Your TSH and T4 are okay but your T3 is quite low there.... and T3 is the most active thyroid hormone.
Certainly you could try adding some T3 for a boost. But you would need to see a private thyroid doctor, you won't get that on the NHS.
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Thanks joziel.
Can u send me the name of your thyroid doc again???
This is where I'm confused. What would warrant trying some low T3 treatment??? It's quite hard core, is it not? Is it likely your chap would suggest trying it because I feel so ill and it 'could' be that?
No. Not had reverse T3. Those three results were done by GP. So I think I'm lucky I got free T3!
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I see Dr Momi at Functional Thyroid Care. You can google his website. He is based in Ireland but you see him on Zoom and he dispenses from UK pharmacies online.
Yes, he would very likely suggest a low dose of T3 as a trial to see if it helps. Not sure it's 'hard core' exactly, it's just medication like HRT.
The only place you can get rt3 tested really is the Blue Horizons Platinum thyroid test, which you'll also find with a google. If you use code TUK10 you'll get 10% off. It's still about £150. I've had to do so many of these...
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Quick question Crispy -- is that range for fT4 correct?
If it is then your fT4 isn't brilliant and could be better.
That fT3 on the other hand is not good (Yep, me and joziel agreeing on something at last! ;D)
How are your vitamin levels? Vitamin D, folate , B12 and ferritin.
Feeling cold all the time is a classic hypothyroid symptom. I noticed on another thread you mentioned about ear issues. Funnily enough, I had terrible ear problems, feeling deaf and like my ears were bunged up for years before my hypo diagnosis.
Have you ever spoken to your GP about central, or secondary, hypothyroidism? It's not as commonly diagnosed as primary hypothyroidism but is by no means rare. I'd speak to my GP about this for advice before jumping in to a private consultation. Then again, it could be primary hypothyroidism, or the start of it. A lack of antibodies doesn't necessarily rule this out.
I'm not saying never go private, just make sure you've ticked all the NHS boxes before this.
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I definitely think, given all your symptoms and what you've already tried, that pushing the thyroid investigations is the best way to go. If nothing else, you need to rule it out and move on.
My feet are blocks of ice when my levels are low. I am starting to get up to where I need now, increasing my T4, and feeling so much better.
I realised that there has never been a time when I've optimised both thyroid and HRT. Last August I increased my HRT to get up to 600-800pmol range finally, but I simultaneously was starting to wean off thyroid meds - thinking that were not the cause of my symptoms because nothing got any better on them.
I now think the symptoms of thyroid and sex hormones being low are so similar that I'd only just got my HRT up to the range which works for me, when my thyroid levels were too low - and then I never recovered my previous function after weaning off meds. And since then I've been gradually increasing and trying to optimise thyroid again. Only now I'm on 100mcg T4 and 30mcg T3 do I feel better, and I'm supposed to increase T4 again. (Supposed to be 125mcg T4 and 30mcg T3. If I can, I will come down some on the T3.)
The other thing to say is that, if you need an NHS referral to endocrinology, get it sooner rather than later because it's a 5 month wait here. (Been referred to find out why I couldn't recover previous function and rule out anything else going on.)
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Thanks all.
Yes my range is correct Sunday girl. ;)
So, I'm debating this. I've had a very long detailed chat with Chat gpt today. He's great. My symptoms are highly indicative of a nervous agd immune response triggered by hormonal flux. And I keep changing and trying hornones.
It's basically ME/CFC triggered by hormonal flux. And, unfortunately (as there's no cure) I think he's right.
I will ask my GP about my thyroid results and mention secondary hypothyroidism. But equally I plan to monitor my cold and flu. I don't think I always feel cold with flu - yet my levels have always looked like that. So I think it is the ME. I'm showing raised and lowered white blood cells at present - which reinforces the immune response. When I'm cold it's a system shivery cold, not extremities, if that makes sense. I feel like I have the flu. I don't just feel cold.
So, one thing at a time I guess.
I've already been to endocrinologist joziel. I actually didn't have a long wait. But once there, he just turned me straight back round. So that's pointless.
My vitamin levels are currently amazing. D is high. B12 is high. Folate high. Ferritin doing ok now as I supplement.
So, on what way is my T4 not good???
And how were you diagnosed as hyp Sunday girl??? With the standard things showing in your results???
Like I say, I won't put this to bed. But I'm not now convinced it's my issue.
X
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Wellll, I wasn't convinced either. But having tried meds now, I am.
The thing is, ME/CFS symptoms and low T3 are IDENTICAL. There are so many people with hypothyroidism who get diagnosed with ME/CFS, it's insane. Given there is a clear 'cure' and treatment for one and not the other, it seems a no-brainer to try the thyroid approach to me: https://meassociation.org.uk/wp-content/uploads/THYROID-DISEASE-AND-MECFS-FEBRUARY-2020.pdf
"Some of the symptoms of low thyroid
function/hypothyroidism overlap
with ME/CFS – so this is a condition
that MUST be excluded before a
diagnosis of ME/CFS is confirmed."
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So, is it as sine as trying T3 - in my case?
I do t need the T4. I might not covert well - part of the problem?? ::)
Well, I'm not saying in putting if to bed. I'm currently trying double cerazette, in an attempt to stabalise my chaotic hormones and therefore bring some stability to my nervous and immune systems.
It's not going to be long before I know if it helps...or not.
So I will defo continue to consider thyroid. But I can't pretend to understand it. Everything I looked at on thyroid.uk looked like I was ok.
And...I'm continually frustrated by the lack of help. So my results are in range, but I could look elsewhere and he told I could try treatment??? I just can't wrap my head around all this. My GP is great. And she did test my T3. And I've already been to endocrinologist. So to pursue it seems odd. :(
I'd love to hear from others who had similar levels then and pursued it with success. X
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You haven't tested your rt3 at all. If your T3 is this low and only just in range and your rT3 is high, then you will for sure be feeling bad. And even if you don't accept that rt3 means anything, it can be agreed that a T3 as low as yours can cause symptoms.
As for going to an endocrinologist and GP - welcome to thyroid care in the UK. You won't get adequate care from the NHS or diagnosis. They do not understand thyroid conditions properly and probably couldn't cope with demand, if they did. Thyroid UK is also pretty conservative.
Yes, it is as simple as probably trying a low dose of T3 to boost your T3 and reduce any rT3. And seeing if you feel better. However, this could tank your T4 as even a low dose of T3 only can do that. (15mcg of T3 only did for me, in a similar situation to you - so I had to add in T4 as well.) Once you are taking T3, adding in T4 to a limited (low in range) amount should not cause excessive rt3 because the T3 you're taking counters the rT3.
Really, you can only try things and see if you feel better.
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The reason I asked about the range for T4 is it's a bit weird and not one I've seen before.
Having said that, with such a wide range your T4 is roughly a third of the way through it which is a bit on the low side.
Your T3 is low and, on the face of things, not enough T4 is being converted to T3. BUT -- This could be caused by other issues though, not just that your body has a problem converting. Conversion is downgraded to slow you down so your body can concentrate on fixing whatever is wrong.
I personally wouldn't pursue getting T3 prescribed privately in your situation. There may be nothing wrong thyroid wise and your levels are due to other things happening.
Please don't let yourself be labelled with ME or CFS until every single other thing has been ruled out.
My own hypo diagnosis was pretty straightforward in the end - when they got round to testing it. With a TSH well into 3 figures I had a frantic phone call from my GP within hours of my bloods being done telling me I need to collect a prescription first thing and take immediately ;D This was after I'd been back and forth for years with various things wrong. The dots were never connected previously though ::)
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As for going to an endocrinologist and GP - welcome to thyroid care in the UK. You won't get adequate care from the NHS or diagnosis. They do not understand thyroid conditions properly and probably couldn't cope with demand, if they did.
Huge round of applause for that comment :) I could not agree more.
Medics don't get the training they should in thyroid matters. Even the so-called experts in endocrinology are diabetes focused.
Mind you, the majority of thyroid patients are female so ..........
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Ok. Well thank you for the input ladies.
Two differing opinions. :o
I'll bring it up with my GP. I do t think I'm convinced. But will get her take on it before I pursue anything further or otherwise.
I absolutely take the point about ME/CFC. That said I've had every test under the sun over the last 7 years and nothing has shown up. Ever. So I think everything is pretty exhausted.
On chatting with chat gpt (it's amazing) it reads like hormonal fluctuations can trigger a severe nervous system / immune system response, in an ME format. That's what I think is happening to me. And it explains why chem meno triggered the worst crash of my life.
Right now I'm re attempting hormonal stability. Time will tell...
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Your GP will reassure you that it is not your thyroid.
This means nothing.
It's your choice whether to pursue it privately.
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Ok. ;D I think i get it.
It's on my list. Right now I'm pursuing hormonal stability and nervous system calming.
If I get nowhere whatsoever, then I'll pursue thyroid. :) and I can do that with your chappie in Ireland?
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I’m also hypothyroid and my Ft3 was exactly like yours when I was first diagnosed - with horrible symptoms. Following a hormone crash couple years ago (coinciding with being post menopausal), I discovered I was not converting T4. I eventually had to switch to T3 only as any T4 makes me feel dreadfully ill due to not converting. I’m still a work in progress with this because I am also now grappling with a CFS diagnosis - I think my own case is a matter of tweaking oestrogen and T3 doses as the two interact unfortunately. Bottom line is, your fT3 level could well be instrumental in your symptoms and (possibly) having a knock on effect on other things (e.g. cortisol). Like trying to figure out a jigsaw puzzle bit by bit. Maybe consult with a private thyroid clinic, as I suspect you need a professional opinion on those results.
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Thank you furyan
Could I ask how you discovered you were not converting T4 to T3?
And ate you saying you 'simply' had results like mine? Just low T3?? And because you discovered the conversion issue, you were diagnosed hypo?
Who did you see?
I'm also looking at the ME/CFS diagnosis.
Thank you for replying. X
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Ok. I'm totally hooked on chat gpt now. Anyone else??? ;D
He says, after discussing my history for the last few days, that T3 could be an issue, but given my reactions to all the things over the last few years, thinks it's nervous system dysregulation (ME basically)
And I should stick with my current plan, but reassess thyroid at the 3 months mark if no improvement.
So I shall do that.
I think I'm losing the plot listening to AI on my 7 year medical battle. But honestly, no exports want to know. ::)
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Furyan, that's interesting and a bit like my situation. This all began for me when I started HRT (I reckon the estrogen in it). Going by symptoms (cold feet, fatigue, very slow metabolism) I'd been hypo for most of my life to some degree although only had TSH and T4 tested (normal, T4 high in range).
When I started HRT, I think the estrogen put too much demand on thyroid for me given how borderline it was - that is one theory for my symptoms. I did a full thyroid panel to find high in range T4 and low in range T3 and high above range rt3. I now also know that I have several crap thyroid genes (the DIO2 alleles for poor conversion).
So it has been a nightmare of trying to unpick what is thyroid and what is HRT, not helped by being a poor absorber of HRT.
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Hi CrispyChick, I’m so with you on being hooked on Chat GPT! I have to remind myself that it’s not a real person, but I find it really helpful and found info. that I could never find anywhere else. Plus it’s really nice to me and listens to anything!
Sorry I’m not much help with your issues, I am suffering lots too but if you are losing the plot then I certainly am too!
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Thank you furyan
Could I ask how you discovered you were not converting T4 to T3?
And ate you saying you 'simply' had results like mine? Just low T3?? And because you discovered the conversion issue, you were diagnosed hypo?
Who did you see?
I'm also looking at the ME/CFS diagnosis.
Thank you for replying. X
Hi Crispy - I had to fight NHS endos for the diagnosis as they felt that suboptimal fT3 was ok as long as fT4 and TSH were in range. Ridiculous since T3 is the only biologically active thyroid hormone. Long story short, I’ve since spent the years switching between Levo treatment, dessicated thyroid then back to Levo and when menopause hit, I crashed. I went back to dessicated thyroid but still felt very ill and my bloods showed that I wasn’t converting the T4 properly as T4 was high compared to my T3 (calculated as a ratio). Since switching to T3 only last year I tried 3 times so far to reintroduce T4 and I become very hypothyroid so the obvious conclusion is I’m not converting it.
I’m now under The Thyroid Clinic (google it) but there are others such as who Joziel mentioned.
From my experience of talking to lots of hypo people there are likely to be symptoms with fT3 at your level, but your T4 to T3 ratio further suggests you are not converting optimally.
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Furyan, that's interesting and a bit like my situation. This all began for me when I started HRT (I reckon the estrogen in it). Going by symptoms (cold feet, fatigue, very slow metabolism) I'd been hypo for most of my life to some degree although only had TSH and T4 tested (normal, T4 high in range).
When I started HRT, I think the estrogen put too much demand on thyroid for me given how borderline it was - that is one theory for my symptoms. I did a full thyroid panel to find high in range T4 and low in range T3 and high above range rt3. I now also know that I have several crap thyroid genes (the DIO2 alleles for poor conversion).
So it has been a nightmare of trying to unpick what is thyroid and what is HRT, not helped by being a poor absorber of HRT.
Hi Joziel - I was warned ages ago of a possible interaction between oestrogen HRT and thyroid meds and thought I’d escaped it - no such luck! Recently I’ve strongly suspected this is why I’m still stuck with fatigue/weakness and wobbly blood sugar. Hence why GP diagnosed me with CFS. However I don’t think it’s that at all - I’ve tweaked oestrogen and T3 meds in succession and can distinctly feel the interaction. Essentially, I’m having to take a higher dose of oestrogen than I would normally need (pee’d off about that!) because each time I raise one I have to raise the other. Fine (and frustrating) balancing act indeed, which I haven’t quite got it down yet.
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He says, after discussing my history for the last few days, that T3 could be an issue, but given my reactions to all the things over the last few years, thinks it's nervous system dysregulation (ME basically)
Just be aware that low T3 (and low in other crucial hormones) can lead to dysregulation of the nervous system though. Nervous system dysregulation is essentially a response to anything the body perceives as stress - be it inflammation, viral, or low hormones. This happened to me when I crashed - because post- meno met with low T3. I experienced lots of adrenaline rushes followed bu cortisol spikes because my body was feeling the stress from low hormones.
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Glad you’re enjoying Chat GPT Crispy, thought it would be right up your street! Love how it remembers everything about medical history and builds on our own unique experiences.
It also suggested to me that my poison reaction to oestrogen could be due to my extreme reaction in peri, so that my nervous system now freaks out when it reappears. Like a physiological phobia!
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Furyan, that's interesting...
The thing I keep coming back to, is that back when I was 21, I tried a combined pill. I was only on it a couple of weeks because it made me feel really weird - I remember at night I'd be sitting in the university library, trying to write an essay, and my heart would be beating fast and hard. I couldn't figure out why. It was also starting to affect my sleep.
I went back to my GP and switched to the POP with the same progestin in it as the COC I'd been on (levonorgestrel) and I was totally fine. Stayed on that for about 8 years.
Which is all to say, I had a similar (less extreme) response to estrogen - albeit synthetic estrogen - back at the start of my life.
After starting HRT, I was ok on the 25mcg patch for 2 weeks but had been told to increase to 50 patch at 3 weeks. About a week after that, the night time symptoms began: Heart beating so hard I could see my aortic pulse in my chest and hear it in my ear on the pillow. Beating at about 95bpm in my sleep, when my resting pulse is around 50. Inner tremors in my core so intense that I thought it was my partner scratching himself and causing the bed to move - until I looked up and saw he was fast asleep and then realised this was ME. Hypnic jerks where I startled awake just as I began to fall asleep. Very light sleep, and not much of that. Hands going numb in my sleep even when just resting on my chest. It was insane. Episodes of high blood pressue (180/90) despite being fit.
Of course, I stopped the HRT for 6 months. But nothing improved. I couldn't understand - if the HRT had caused this, why did stopping it not get rid of it!? Now I felt totally trapped, having previously thought the worst case scenario was I couldn't take HRT.
Anyway, thyroid was just one of the many things I investigated. And taking a low dose 15mcg of T3 only (also via the Thyroid Clinic at the time) was a trial treatment, to see if it helped. At first, the first week, I think it did help - and then it didn't. Tests showed my T4 was now below range due to my body responding to that little T3 dose. So I was put on 50mcg T4 as well. Eventually we did get my thyroid labs to look 'good' on T4 and T3. I still felt bad at night.
But, in all this, the HRT was never higher than 400pmol. Eventually I concluded the cause wasn't thyroid. I began to wean off the thyroid meds, just as the Newson Clinic told me to try increasing my HRT to get me to 800-1000pmol. So my HRT was going up as my thyroid was coming down. There were a few weeks where I felt good, just before this....
Then I felt really bad again. Tested thyroid 6 and 10 weeks after coming off, to find I never regained my previous function. My T3 was way below range (2.5) and my T4 was at the bottom of the range (12.1 in 12-22 range) but my TSH was normal at 2.25 and wasn't demanding more thyroid hormones.
At this, I had to go back onto thyroid hormones again. Since then I've been gradually increasing my dose and I'm needing a lot more T4 to get into range than before - currently on 100mcg and it's expected I will increase to 125 in a few weeks. Also on 30mcg T3.
BUT - NOW I'm on around 850pmol E with this higher HRT dose AND I'm finally getting there with the thyroid dosing (noticed a huge improvement in night time symptoms and sleep when I increased the T4 to 100mcg) and IT'S FINALLY LOOKING POSITIVE!!!!
Which is all to say: It appears that I need BOTH pretty high E levels around 850, PLUS thyroid meds to get me to good T4 and T3 levels (forget about TSH, mine isn't working properly anyway) for these symptoms to be addressed. I still have NO IDEA WHAT IS REALLY GOING ON(!!). But my working hypothesis is that starting estrogen screwed up my thyroid somehow by putting a lot of demand for thyroid hormones which I just didn't have.
I have been referred to endocrinology. In my mind - to rule out anything more widespread going on with my pituitary. (Ie to test growth hormone and see if I am also deficient in that, and to get an MRI of my pituitary perhaps.) I don't trust the endo with the thyroid med side of things and will probably stay private with all that.
That's my story so far anyway. This has all gone on for about 3.5 years now. I finally have some hope. It has been hard to keep going sometimes, when my sleep is so bad, but luckily I am self-employed and work from home and can set my own hours. The downside is that I don't get sick pay and if I don't work, I don't get money....
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Thank you furyan.
I really appreciate you taking the time to explain all this to me.
I will consider my thyroid. Right now I'm trying hornones, so it'd be silly of me to pursue two things at once.
I'll consider once I find the outcome of my current trials. Thank you. X
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Introducing or changing one thing at a time is a very sensible way to go. That way you'll know for definite what is causing any sort of reaction, either good or bad.
Many people make the mistake of deciding to change or add in several things at once and then have a heck of a job unravelling things when it all goes pear shaped. Or then again, if there are positive results, you can end up continuing multiple medications unnecessarily.
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Yes. Totally agree Sunday girl.
I've been in this awful state for 7 years. I suspect a lot of it is now my chopping and changing. So I definitely think I need stability. Unfortunately stability doesn't come my way by doing nothing, probably because my peri is now at the torturous stage.
I now need to try one thing at a time to conclusion. Chat gpt is helping me ;D
I'm not ruling thyroid out - thanks to the advice of you ladies. But it's just not the right time for me to pursue it. And, ultimately, as chat gpt tells me, if this was all thyroid, the combined pill wouldn't have taken it away 5 years ago. And it's telling me that my extreme reactions to starting/stopping sex hormones are not indicative of thyroid issue either.
I'm weighing it all in. And it will remain on my list for later this year. :)
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Chat GPT is fantastic, it diagnosed my toxic nodules when the NHS couldn't.
My story to echo the interaction between sex hormones and thyroid.
My TSH has been on the bottom of the range 0.27/0.3 etc since I had lots of surgery in 2016/17/18. I had a thyroid goitre pop up in 2016 which was the first time my thyroid was tested.
I was tired all the time but this was put down to the surgery, then to Peri and as I was "in range" I was of course "normal"
I can now also see that my folate has been low since then but again as was in range I wasn't aware of it (pre app access to test results)
Fast forward to the end of 2023 and into 2024 and I couldn't cope with life. Went onto HRT privately (I have a DCIS history) and had been trying to avoid HRT.
HRT was fantastic for c. 6 weeks, then the fatigue, anxiety, high heartrate etc. Thyroid goitre 'reappeared' having been less obvious for some years.
Lovely GP referred to endo who refused the referral as I was "in range" 🙄
See private endo (Somerset/Bristol based) who said "we don't all sit in ranges and within boxes" and has treated my subclinical hyperthyroid.
I feel so much better, it's a work in progress as the med dose has to be tweaked slowly. I'm also taking propranolol as my heart rate isn't yet entirely under control.
What I can see is a clear swing in my thyroid symptoms over the month, from day 15 onwards I have to increase the propranolol as my heart rate increases, but once my period starts (still peri at 55 🙄), I have to drop the propranolol back down or I get reallllly sleepy!
Private endo says clear link between sex hormones and thyroid, Chat GPT agrees and has some suggestions about progesterone use to help but I'm not changing anything else whilst I'm tweak the thyroid med.
Sorry that's long but there is an increasing awareness of the link between sex hormones and thyroid but it's really difficult to unpick it and to work out what is cause and affect.
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Thank you seaside girl.
I am definitely coming round to getting a proper (private ::)) opinion on my thyroid.
Will any private endocrinologist be good? Or am I better at one of the online thyroid clinics mentioned??
Also, I note my test results show total t3 was in process. Is this a worthy test result. Will total t3 when considered next to my low T3 show something???
Many thanks.
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Crispy, I don't recommend 99% of endos for thyroid issues. They don't understand that TSH is irrelevant and they keep a lot of people sick by underdosing them. The only reason to see an endo is if you want to investigate more complex issues beyond the thyroid itself, like the pituitary or if you need physical investigations like thyroid ultrasounds etc, or have a suspected physical cause for the disease. Probably that would not be the place to start, the place to start would be optimising your thyroid levels with meds and seeing if it helps your symptoms.
Total T3 is not a useful test. It's free T3 you need to know.
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Ok. Thanks for that. Makes sense. :-*
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I'm not sure I'd agree re Endo but I'm overactive rather than under so the GP wouldn't treat so I had to have consultant care and the NHS wouldn't see me.
I wouldn't have been treated without the private Endo but you do need to find a good one who understands thyroid not diabetes.
This might help with potential options https://thyroiduk.org/get-support/thyroid-uk-support/private-gps-and-practitioners/
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But my working hypothesis is that starting estrogen screwed up my thyroid somehow by putting a lot of demand for thyroid hormones which I just didn't have.
That's my story so far anyway. This has all gone on for about 3.5 years now. I finally have some hope. It has been hard to keep going sometimes, when my sleep is so bad, but luckily I am self-employed and work from home and can set my own hours. The downside is that I don't get sick pay and if I don't work, I don't get money....
I’ve recently concluded this about the oestrogen/thyroid connection too and it’s not just in our heads because there is a known interaction between the two. I took the plunge and had the mirena fitted couple weeks ago which seems to have increased my need for oestrogen as well. I have read some ladies here sharing the same. I switched to gel only which has helped a little but I’m now having to slightly increase to just over 4 pumps to try counter the effects of the mirena. I find that increasing oestrogen does bring the side effect of more mucous build up in my chest/throat.
Like you I’m self employed and this has gone on for about 1.5 years now. I’ve had to go from face to face work to working online for now due to the fatigue and poor stamina this has all caused. I hate it and it’s not ideal for my work but at least I could return to work from being sofa bound for about 6 months.
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Furyan, me too. I have stopped face to face work and now work online from home only, partly due to this.
You might find the Mirena effects wear off. I seem to remember that for a few months after it is fitted, it does release a bit more progestin which can go systemic. But then it reduces to the regular dosage and it stops going systemic for most women.
The only reason I sometimes doubt the estrogen-thyroid thing being a cause for me, is that my thyroid panel was actually pretty normal before I ever went on thyroid meds (even after starting HRT and after these symptoms had begun). I had high rt3 (33, above range) and low but in range T3 (3.9, range 3.2-6.8). We were a bit sceptical that this would be enough to cause the symptoms I was experiencing so it was a 'trial treatment' to give me a bit of T3 and see if it had any effect.
I really now suspect that if I had never gone on thyroid meds but just increased my estrogen sooner into the 850pmol ish range, my symptoms would have gone away. And that I really just needed this higher E dose.
The reason we didn't try that earlier, is that at first I appeared to be incredibly sensitive to estrogen: This all began when I started estrogen, even on a low dose of 50mcg and it at first appeared to get worse (not better) with each dose increase. So I stopped it totally for 6 months. So due to all that history, the decision to trial higher doses was very delayed. And by then I had begun thyroid meds.....
And for some reason starting the thyroid meds caused my own pituitary to give up so that even when I came off them, I never recovered previous function and had very low T3 and T4. So now I really do have a bone fide thyroid issue as well. However, I am doing well at the moment: I've managed to source some Estradots again from Newson and CLoudRX and I've just increased my T4 and am sleeping well.
At the moment I am a sink for T4. I am increasing doses but levels are not going up on bloods, I feel great for a week after increasing and then it backslides. Just increased to 125mcg T4 and still on 30mcg T3. Waiting for this endo referral...
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Furyan, me too. I have stopped face to face work and now work online from home only, partly due to this.
You might find the Mirena effects wear off. I seem to remember that for a few months after it is fitted, it does release a bit more progestin which can go systemic. But then it reduces to the regular dosage and it stops going systemic for most women.
The only reason I sometimes doubt the estrogen-thyroid thing being a cause for me, is that my thyroid panel was actually pretty normal before I ever went on thyroid meds (even after starting HRT and after these symptoms had begun). I had high rt3 (33, above range) and low but in range T3 (3.9, range 3.2-6.8). We were a bit sceptical that this would be enough to cause the symptoms I was experiencing so it was a 'trial treatment' to give me a bit of T3 and see if it had any effect.
I really now suspect that if I had never gone on thyroid meds but just increased my estrogen sooner into the 850pmol ish range, my symptoms would have gone away. And that I really just needed this higher E dose.
The reason we didn't try that earlier, is that at first I appeared to be incredibly sensitive to estrogen: This all began when I started estrogen, even on a low dose of 50mcg and it at first appeared to get worse (not better) with each dose increase. So I stopped it totally for 6 months. So due to all that history, the decision to trial higher doses was very delayed. And by then I had begun thyroid meds.....
And for some reason starting the thyroid meds caused my own pituitary to give up so that even when I came off them, I never recovered previous function and had very low T3 and T4. So now I really do have a bone fide thyroid issue as well. However, I am doing well at the moment: I've managed to source some Estradots again from Newson and CLoudRX and I've just increased my T4 and am sleeping well.
At the moment I am a sink for T4. I am increasing doses but levels are not going up on bloods, I feel great for a week after increasing and then it backslides. Just increased to 125mcg T4 and still on 30mcg T3. Waiting for this endo referral...
I understand why you’ve sometimes said that you have no idea what’s going on and just going along with the treatments according to how you feel and bloods. Good to hear that the higher oestrogen dose seems to address some of your symptoms though - there are a few ladies who have found this even if it goes outside the conventional dosing. How do you know how well you’re converting that T4 though?
I also have zero idea exactly which part of my jigsaw (thyroid, oestrogen, b12, and now mirena) is causing my fatigue/weakness as they all give these symptoms! I can say that having the mirena has really ramped them up to the point where I’m scared it might have given me even lower cortisol! Really hoping you’re right that the mirena will settle - I’m currently adding 3 pumps of gel to a .75 patch to try balance out the mirena, and discovering that gel is in fact stronger than the patch?
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TSH - was 0.8 now 1.3. Range 0.23 - 5.6 mu/L
Free T4 - was 16 now 17 Range 9-28 pmol/L
Free T3 - was 3.4 now 4.3. Range 3.1-6.8 pmol/L
Well I trotted along for my bloods to be retested on something that was flagged a few weeks ago.
For some reason they retested my thyroid too. ;D
So, all my levels have gone up slightly. But that T3 now sits middle of the road within my range. Is that better?
The only thing I've changed is starting progestin only pill at heafty dose.
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Well I trotted along fur my bloods to be retested on something that was flagged a few weeks ago.
For some reason they retested my thyroid too. ;D
TSH 1.3
Free T4 17
Free T3 4.3
To my knowledge - with those FT4 and FT3 levels, you are not converting the T4 at all well. I would expect a higher T3 than that with T4 of 17. I was very similar when I crashed. You may need to add a little T3 to your regime but you need to consult with a thyroid professional to discuss this. There are countless other people who don’t but, in your case for now, I’d definitely get a professional opinion to look at treatment options.
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Ok. Thank you. I'll keep thyroid on my list for once I've come to a conclusion on my latest hormone trial.
Sorry, I was messing with the post when you replied. ;D. I've now updated my then (last month) and now (which was a wee Brucey bonus test. Especially as my GP tests free T3 ;D)
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Crispy with that T4 and T3 ratio, I would suspect you have high rT3. Like Furyan says, you are not converting your T4 to active T3 very well at all - and usually when that happens, it's going somewhere else (rt3).
As for whether that's enough to cause these kind of symptoms, that's the kind of situation I was in before starting thyroid meds. Only I also tested rT3 and found it was above range. We still don't know if that was causing any of my symptoms, but I can for sure say that I need both estrogen and thyroid optimised now to be able to sleep.
I am doing incredibly well this last week, since increasing my T4 to 125mcg (keeping T3 at 30mcg). I am sleeping 7.5hrs and it's the sort of 'head hits the pillow and you're unaware of anything until you wake up at 8am' sleep which I used to have before all this mess began 3.5 years ago. I am back on my 100 Estradots (thanks to Newson and CloudRX) and I think that also helps because I get more estrogen from the 100 patches than the equivalent dose in smaller patches, due to the grimy ring which happens around each patch(!).
I am now waiting 5 weeks to re-test thyroid doing another full venous draw with the Blue Horizons Platinum test including rT3. If I continue to be okay and to sleep well, my next thing to try will be to reduce and maybe stop the Oestrogel. I bloody hate the Oestrogel and wish I could just be on 300mcg patches... I worry about contamination (of pets and partner) and I don't know if I'm actually absorbing much of it, either.
Furyan, how do I know how well I'm converting the T4? Well, every 6 weeks I am running a full thyroid panel with Blue Horizons, including rT3 - so I can see if my T3 goes up and what is happening with my rT3. My T3 dose is staying the same at 30mcg so any improvement is due to conversion. Besides, my sleep is massively transformed when my T4 gets up into range. My next set of bloods will be very interesting.
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Well Crispy your T3 does show a slight improvement but whether that's down to you adding in a POP is a maybe at best ::)
Sex hormones and thyroid hormones do have an effect on each other so it's a definite possibility. Then again, when a person's thyroid is failing, the levels can jump around drastically before you become overtly hypothyroid - the thyroid itself can increase it's own production of T3. Sorry, not much help there am I? ;D
Joziel, I'm not going to get into another argument with you but feel the need to say that yes, it's possible that Crispy has an increased level of rT3 but she won't be feeling any adverse effects because of it. Low T3 causes symptoms, not high rT3. (Although there is a direct relationship between the two) :)
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Whatever. Your opinion.
Not the opinion of many doctors: https://www.restartmed.com/reverse-t3/?srsltid=AfmBOorqFGdRS3-OBg4qDHKXlzHateLLJO5TWNXeAn4gQU5gcF0lmMnV
Doesn't really matter, in this instance.
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Whatever. Your opinion.
Right back at you :)
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Hi Crispy,
Is the T4 range correct? If it is correct at 9 -28 pmol/L then you don’t have a lot of T4 to convert to T3. Not sure on a progesterone link, I’m experimenting with thyroid and sex hormones too.
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I asked the same thing Amanda. It is correct although not a range I've seen before either.
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I've just checked again. ;D
It's definitely correct. Scotland?!? ???
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I think people are just surprised how high the top of that range is. Normal NHS range is 12-22 or thereabouts. They do vary depending on which lab and which equipment is used but not usually by much.
How you feeling Crispy?
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So I've just seen my GP and she deliberately had the thyroid tests redone because my T3 was low.
Interesting. But now it's come back up she's happy with it.
She did agree that sometimes treatment is given in this private sector for NHS in range thyroid. But it's out of her remit. Which I get.
We chatted about private services and she agreed I could pursue.
But right now I don't want to be given thyroid meds just because I've gone to a private clinic. But I will pursue it in a few months if I get nowhere with my current trials and treatments.
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Sounds like you've got a decent GP there who actually listens! Not to mention understanding the importance of T3!
I fully get this bit though
"right now I don't want to be given thyroid meds just because I've gone to a private clinic"
Sometimes, just sometimes, the private sector do seem more amenable to prescribing when things are just a little bit off rather than taking a longer term monitoring view.
As you said, you've got the option to pursue thyroid in the future if the things you're doing at the moment don't work out.
Xx
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Thanks Sunday girl.
That's exactly what I'm thinking. I'm sure my lovely GP will test me again later in the year if I come back to it. And now I know she thought my original test was a bit borderline - so something to compare to.
Plodding on. :)
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Sorry to barge in here and restart this thread but crispy chick have you ever been tested for coeliac disease?