Maybe things are looking up…

[Lotika]

So, after 7 months of feeling pants on the NHS T4/T3 trial, I decided that I needed to up T4 on Thursday and emailed the endo man. He’s thinking about it, apparently. Being an impatient patient, I upped the T4 on Thursday anyway, whilst he cogitates. As you do. I’ve been crying daily for months now as I’ve just felt so rough, but today, despite something of a hangover (whoops!) I actually feel vaguely human… I think I’d be feeling pretty darned good without the hangover, so <whisper> maybe - just maybe - I am on the right track, finally…

The endo man’s initial response to the request for an increase, whilst he reflects on the numbers, is that sometimes we just don’t seem to absorb the meds so well. If that’s the case, it’s been happening for 6 months, so I call that under medicated, thank you, doctor. But given that I’m now taking more T4 than ever and T3 on top of it, it’s certainly true that I look a little ropey on that front and if I go sailing over range on fT4 (pffft - hardly likely, given recent numbers) I can test and knock back again, so a big fat whatevs to that, matey!

But my body hardly hurts at all (well, aside from the banging headache!) and I feel like I could actually manage some exercise. OMG, hello Lotta! I’ll just enjoy it for today, I figure, and try not to get too excited, just in case it doesn’t last. Very early in the dose change to judge anything, but… hmm. Maybe!

Lotika

[SeasideSusie Remembering]

Well you may have cracked it Lotika and have become a member of the "we need decent FT4 as well as FT3" club. I hope you've found your answer, if so I hope your endo accepts that this is what you need (if not you can always buy your own Levo 😉).

[Lotika in reply to SeasideSusie]

Thank you - I certainly hope I’ve cracked it, but I feel like I’ve had a false dawn before, so I’m trying not to get too carried away… It’d be the cherry on the icing on the cake if the endo man signed it off and I got to feel well on the NHS dime. But if I carry on feeling like this, I’d back myself to convince him at some point!

If this continues, I’ll finally be able to get on with my life, work in sales again, maybe, if that’s what I want to do, or heck, just work at all… I’d been thinking I’d never get properly better - that I’d have to accept some symptoms or others - now, I think maybe I can get better… !

[fuchsia-pink]

If sometimes we just don’t seem to absorb the meds so well that would suggest to me that sometimes we need an increase in our meds. And NOW not in a few weeks while he thinks about it. But what do I know - I'm just a patient

[Lotika in reply to fuchsia-pink]

I totally agree - 6 months isn’t a blip, it’s a lived reality!

[jsy_girl]

Well done Lotika. Great news. Your updates always come a few days before I am about to experience the same Endo / patient argument (I mean discussion). I am about to ask for more T3. He said in the last sesh that he won’t go up anymore so that will only leave me with T4 to play with (easily anyway). In my planned discussion with I’ve been having in my head I’m thinking to to reassure him that I know how feeling hyper feels and I’ve no interest in feeling that way either so if it turns out to be too much am very happy to reduce.

What combo of doses does this now have you on?

[Lotika in reply to jsy_girl]

Oops, I replied to me and not to you - see below!!

[Lotika]

Thank you! Gosh, yes, from Graves, you definitely know what hyper/ too much meds would feel like, so it’s a good argument! I was finding that the more T3 we added the more my fT4 went into free-fall. So I was initially with fT4 at 70% and fT3 at 11% on 100 mcg levo only. I’m now on 125(!) + 10 T3. FT4 only 50% through range when I last tested on 100 +10, with fT3 at 45. I’m guessing that maybe fT4 has now crawled over 50 and maybe the increase in T4 has increased fT3. Definitely the fact that I have very little body pain today would suggest that fT3 has risen, as I have noticed a definite correlation between fT3 and body pain, personally.

[jsy_girl in reply to Lotika]

That’s fab. Such progress. I feel the increase up to 20mcg T3 was pivotal for me. I have more energy all through the day. I also, as suggested by shaws I think, now take it all in one go. Stopped me feeling hypo midway through the day and now I go all day. More deckchairs haha. It’s just like 2 days a week I feel I need another 5 later in the day. Just not sure you’re meant to adhoc administer yourself an extra 5 as you feel like it so that’s why I’d rather get it from the doc. But we’ll see. I also have noticed the pain I used to get in my fingers and pins and needles almost disappeared entirely. Also my pre period depression has vamooshed. That alone is life changing. It’s all good. Just refinements now hopefully.

[Lotika in reply to jsy_girl]

That sounds like you have come a really long way, particularly given that you had to take such tiny doses in the beginning!

I guess - worst case - you could source some spare T3 for those couple of days a week… ?!

[jsy_girl in reply to Lotika]

100% I can’t believe it either. I wish I’d know definitively that it would get better at the time as I so often nearly gave up. And imagine if I’d given that knowledge to the doctor!!!!

[nellie237]

Fingers crossed🌼🌸

[Yeswithasmile]

That’s a great post!! Lovely to read you seem to be getting there 🤞🏻🤞🏻🤞🏻.

Brilliant about the body pain. That’s one of my main symptoms and so I am soooo happy for you 👏🏻👏🏻👏🏻 Long may it continue 😊

Really interesting to read the other posts to especially the pre-period depression. Although mine is more massive intolerance and no patience whatsoever. I wish that would go.

So pleased for you Lotika. I know you don’t want to get to ahead of yourself but even one good day is enough to help that towel firmly on the rail isn’t it?!

Best wishes and positivity thoughts coming your way x.