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[Furyan]

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.

[CrispyChick]

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

[CrispyChick]

Ok. I'm totally hooked on chat gpt now. Anyone else???

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.   

[joziel]

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.

[ToriiJ]

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!

[Furyan]

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. 

[Furyan]

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.

[Furyan]

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.

[dangermouse]

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!

[joziel]

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....

[CrispyChick]

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

[SundayGirl]

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.

[CrispyChick]

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 

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. 

[Seasidegirl]

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.   

[CrispyChick]

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.