NHS T4/T3 trial - now what have I gone and done?

[Lotika]

So, this old T4/T3 trial business... I’ve gone and banjaxed it once again!

So, a quick recap. I got prescribed T3 in Dec but handed a massive cut in T4 at the same time and spent 6 weeks feeling like the mistress of grot. I tested and got an increase in T4. I felt slightly better but my PND was playing up so I was prescribed antibiotics, which totally trashed my gut and ability to absorb my meds and generally felt very hypo and unwell. I had an appointment with the endo and despite the dose increase, both frees were still below 50%. The endo said to change the timing of the T3 (aka the deckchair intervention) and to email him in 3 weeks to think about an increase in T3 depending on how I was feeling, as he felt that absorption issues might be masking the true state of affairs. That email is due to be written a week today.

The deckchair intervention improved things, but I still felt under medicated and was worried about absorption so I dropped dairy. Things improved a little and I felt almost human on Sunday! Thinking that I need to know what this dose looks like in cold numbers and whether I was absorbing better, I did my test on Monday. As a special treat for getting up early to stab myself in the finger, I upped my T3 as the endo plans, immediately after the test, just to see... and felt awesome! Finally the light at the end of the tunnel - I was so excited!

I got my test back yesterday. Apparently my cholesterol and liver are pretty good, although the former slightly high... and...and... ?! I only ordered the wrong damned test!! I went to sort my pills out last night and realised I had a strip of 100 mcg levo not 50 mcg in the box. When did I run out of 50? Did I take 75 as prescribed or 125 mcg levo on Monday? Yesterday? What about Sunday? I know it was all correct up to Saturday, as I was working with the pill box but decided to skip vits for a few days ahead of the test, so... ugh! Am I absorbing meds better or just taking almost double the amount?!!

Mixed news, then! The endo doesn’t need a blood test for our next move, thank god! He doesn’t want to test for 3 months, which is wonderful. And I am feeling pretty darned fine, but I have no idea why...

I’ve ordered another test. What I think it is going to tell me I have no idea, but I suppose it will tell me something about vitamins. And if I plummet over the next few days, then I will conclude that I probably overdid the levo for a couple of days... Maybe I shouldn’t test next week though... should probably wait for things to feel like they’ve stabilised somewhere... maybe that’s next week and maybe it isn’t.

Damn, what a muppet though! On Monday, I was ADD me. My brain was working properly and my thoughts were flowing. No brain fog!! I had a feeling I haven’t experienced in years but is totally me, how I used to be. It’s an ADD thing, I think. I felt a bit overwhelmed by the vivid technicolour of the world. In a good way. America does this to me with the endless adverts by the freeway and I get a sense that I’m being bombarded by visual information, if you can imagine? Anyway, I guess it shows that the trial really should work for me somehow, when I get out of my own way!

But pfffft!

[greygoose]

Over-doing the levo for a couple of days wouldn't have an instant effect. So, it's probably the increase in T3 that has made you feel so good. I wouldn't fret about it, if I were you. The odd extra dose of levo here and there has minimal effect on six-week labs.

[Lotika in reply to greygoose]

That makes sense! I hope so... one of the reasons I wanted to do the test at all - and I suspect you may have a different view, which is why I’m running it past you - is that I would prefer as much T4 and as little T3 as I can get away with, for 2 reasons: 1. I think it is more stable and a smoother ride if you can get away with it; and 2. It will be cheaper / easier at some point in the future if I find this endo leaves and a T3-hater takes his place and therefore I lose the NHS prescription... So, I was thinking that if the numbers showed a lowish fT4, whatever the fT3 result, that I would contemplate an increase in fT4 first. I agree with you, though. The timing of the improvement - literally 2 hours after I took the bigger dose of T3 - would indicate that the endo is 100% right that it is more T3 I need. And it really did feel like that eureka moment. And with that in mind, I’d be an idiot to listen to my bias over my body, I suppose, so maybe T3 first after all!

[greygoose in reply to Lotika]

As far as I'm concerned, it's always T3 first. But, then, I can't tolerate any levo. I'm on T3 only. So, maybe I'm biased, too.

[tattybogle]

Just goes to prove my (as yet unpublished) " It's All Run By Mischievous Blue Pixies" theory of thyroid metabolism .... If they notice you're paying attention to getting consistent/comparable testing done, they deliberately move your T4 /T3 /TSH levels up and down in the opposite way to what they should go. And if that doesn't work ... they get up in the middle of the night and fool around with your pill box.

Glad to hear you've had some moments of recognising your 'old self'.

[Lotika in reply to tattybogle]

Ha ha - it certainly feels that way between my own bone-headed pill box mistake and the antibiotics. I’ve only had one sensible blood test result this whole time! I blame the husband - I hid the spare 100 mcg tablets in my pill box as he keeps pilfering my back up stock, which of course I may need in order to up my dose on a trial basis without the endo’s blessing at some point in the distant future! He’s upped his own medication but not his prescription and I see some inevitable pressure on my personal supply, although he blithely assures me that he’ll get more when he asks for it because they’ve never questioned any of his other repeat orders before... hmmm. I think I’m just going to swipe a packet of his pills and hold them hostage just in case...

[tattybogle in reply to Lotika]

Good plan.. when you've nicked them, 'PM' me your hiding place ... then when you can't remember where you hid them ... i'll be able to remind you

[Lotika in reply to tattybogle]

🤣🤣

[JAmanda]

What on earth is the deckchair intervention?

[Lotika in reply to JAmanda]

Well, the endo said to change the timing of my second T3 dose, which I equated to rearranging deckchairs on the titanic, given both frees were under 50% so changing the timing of the dose doesn’t deal with my being under medicated!

[helvella in reply to JAmanda]

The classic deckchair reference is to the idea that, as RMS Titanic sank, the purser (or whoever) spent their last few minutes afloat - and alive - re-arranging the deckchairs on the deck.

So, a pointless shuffling round of things which, in the fullness of time, would have no impact whatsoever. Instead of a meaningful contribution to a resolution or improvement.

[JAmanda in reply to helvella]

Ah of course! I'm doing plenty of that! Or am I, god knows! Anyway, this week I have decided to take the first T3 half an hour after the t4, then split the remaining dose into a pm and an evening v dose. Who knows if this is a meaningful change?!

[Lotika in reply to JAmanda]

The irony is that what I was calling a deckchair intervention actually did improve things a bit, so who knows?! Definitely worth a shot, in my view!

[jsy_girl]

Great as always to hear from you, and what’s happening. I agree with greygoose that any movement in levo short term won’t make a difference. My endo said a change in dose would be felt around 2 weeks later with levo and takes 12 weeks to finally finish moving so sounds like that T3 boost has been beneficial. I wish I could just tolerate t3 easily enough that I could just take an extra bit and not feel awful ha ha. I am getting more stable on my 10 again now though so hoping to go to 12.5 at the weekend.

Interesting about dairy. I don’t eat dairy. It hates me even though I love it. Sad times.

What are you thinking of testing? If thyroid id get settled on your new doses for 6 weeks before bothering. I’m not entirely sure what they show us anymore anyway. Breaking from convention I know but if on t3 the TSH is suppressed and ignored, the T4 drops, and the t3 fluctuates due to dose and deckchairs and the weather, and season, and what you’ve eaten etc..... I know I know, on combo the T4 dose / t3 position is kind of useful.... just being cynical for a hot moment 🤣

[Lotika in reply to jsy_girl]

That made me laugh! Good point! Well, I will see something of vitamins - D, B12, ferritin. And I am behaving myself with T3 today - old dose - so in theory, the test might tell me something(ish) about how this old dose looks... or could, compared to the more non-absorbing test... but as you say, a tad unlikely really, due to the blue pixies of thyroid numbers! Plus, I don’t have anything much on next week, so there’s the entertainment value and if they make me look undercooked (I don’t feel undercooked right now, oddly) I can share them with the endo for extra meds. That was Monday’s plan before the grand T3 revelation...

I think I shall see how I go old-dose wise and decide later in the week, depending on how things settle... If I feel rubbish, then test.

The dairy is an odd one, isn’t it? I had to give up cheese and milk chocolate since starting T3 as PND is horrific. Milk was the last to go. I miss blue cheese and cream in sauces when I cook - my chicken and tarragon is awesome if I do say so myself and I miss that - but I miss gluten more! Glutinous things are just more convenient. My big worry before the grand reopening was that I couldn’t have a pint because if I drink bottled GF lager in pubs I will bankrupt us! A coeliac landlord told me that most draft lager (not Fosters ) is double filtered and therefore low gluten and that he can drink it.... and I went very hard at that particular experiment on Monday and haven’t had any noticeable ill effects (yet). I’m meeting some friends later to collect more data Annoyingly I can’t switch to cider as the high sulphites make me immediately unwell. Gah.

Anyway, another reason to test. If I feel rubbish and the numbers look OK, then it was the Becks what done it!

[jsy_girl in reply to Lotika]

Ha ha. Good strategy

I missed creamy foods too until I started getting mindful chef and they do some meals with cashew cream in and that’s been amazing. So I’ve had some creamy alternatives and they’ve been yummy. Also of course coconut cream and milk work too for Thais and curries. But for pasta (and I use lentil pasta) etc cashew cream is delish.

Good tips on beer. I don’t drink anything like that I’m a cocktails girl. Not lately though of course. Going to pub for first time Sunday lunch! Woop woop. Bring on the drinkies.

Love that - I was bored so I did a blood test 🤣🤣🤣 we are such geeks. It’s def something I’d do!!! Report back!!

[Lotika in reply to Lotika]

I love the fact that someone understands that I want to do a test just to have something to talk about!!

Must try to make my own cashew cream... I have the mindful chef cookbook... and a vitamix, so it must be done! Am out drinking within everyone and have only just kept up on pints. Wouldn’t have managed this far on cocktails...

5 pm start - ouch!

[Buddy195 Administrator]

I’m reading your post with interest Lotika & wishing you well. I’m glad you’ve at least experienced a ‘eureka’ moment of feeling like you did post thyroid symptoms.... I’m still holding out for that one!

[Lotika in reply to Buddy195]

Thank you Buddy! I think I respond fast to T3... but wish I knew exactly what I did!