Need some reassurance about starting on T3

[jsy_girl]

Hi all

I started T3 on Monday. I took 5mcg without dropping my Levo (which is what I was instructed to do) based on stuff I’d read here. My plan was to drop it in a weeks time.

I felt quite a powerful reaction, shall we say, to that introduction in terms of a pressure in the centre of my chest and just a general feeling of being unable to relax. I am fidgety. So I didn’t take anymore and the next day I cut it even further so just 1/8 of a pill in the am. I felt kind of okay with this, and did same today. I can just still feel it there though... not in chest tightness but I just feel like a slight buzz, maybe an edge from it? I don’t know if that makes sense. Anxiety? I’m not sure how to describe it.

Anyway my plan was to do this dosing for another two days and then try and go up to 5mcg which I’ll have to split dose because I imagine 5mcg all at once will feel too much. And then 10 -14 days later I was going to think about adding another 5mcg.

So what is my question - am I approaching this right? Is what I am feeling normal? How do I know when I’m ready to increase?

And what do I do about my endo’s secretary who’s bugging me for an appointment at the end of March. I just won’t have gotten to a place where I want my bloods scrutinised as my dose won’t be stable. Or is that okay? Should I be honest with him and say I’ve had to do this gradually.

Any thoughts welcome as my friends don’t understand. “Maybe it’s a good thing if you don’t need to take as much?” Cue facepalm and explain it doesn’t quite work like that. Although of course If this is the right dose that would be fine, but I don’t think anyone is suggesting 2.5mcg is the right dose. Hopefully you catch my drift...

[Buddy195 Administrator]

I’m on a trial of T3 and followed advice from this forum to reduce Levo for one week prior to adding T3. I want to make slow, steady changes, as I have previously suffered with adverse symptoms (eg palpitations) by increasing Levo in too large a step. I retested my bloods after 6 weeks on 10mcg T3 (2x5 daily dose) and will test again next month to keep a close eye on my levels. I postponed my endo appointment as I decided to follow advice on here rather than follow written prescription & am glad I did as my recent bloods would show over medication if I took the 20mcg T3 prescribed.

[jsy_girl in reply to Buddy195]

Yes that’s what I am wanting to do - did you retest on 6weeks after finally getting up to 10? Was your endo sympathetic with waiting that long? Did you feel any of the feelings I described when introducing it?

I didn’t drop levo as I did discuss with others on here that I might not need a reduction, so wanted to make sure I had some t3 introduced before I reduced the T4. So waiting till 5mcg is safely going in daily.

[Buddy195 Administrator in reply to jsy_girl]

I told my endo I was adding it slowly & he was fine with this cautious approach. I haven’t had any adverse reaction/ but neither have I had the ‘eureka’ feeling that others have posted about. Benefits so far- reduced eye inflammation & eyebrows starting to sprout in outer (missing) third.

[Jazzw]

I’ll be honest, I’m always a bit, “Whaaay, what?” when people post about not being able to tolerate tiny dose changes. I start going down the road of, “Placebo effect??” but then I usually remember to go and look at their latest blood test results...

Over my many years of posting here, I’ve noticed (without having any scientific basis, LOL) that those who struggle most to introduce T3 without having slightly odd side effects are those with low ferritin. And I see your ferritin levels are pretty low... It might be the issue here.

I don’t think I’d be reducing my Levo levels either given your results—or if I did, not by much. So your plan sounds good. But perhaps it would also be worth having a think about your ferritin levels and whether iron tablets might help?

[jsy_girl in reply to Jazzw]

Hello ah okay that’s really interesting. Of course I have understood the need to increase my ferritin from all the advice on this forum but that it could correlate to my symptoms shall we say is interesting.

Do be rest assured that I have been doing everything I can to increase my ferritin. I take 1 ferrigrad or 1 ferrous fumerate plus 3 iron bisglycinate daily. With vitamin c 1000mg. I also had my gut tested and was told I am low in one particular bacteria that is good for iron absorption so started on work to support that this week too. I also make and regularly eat chicken liver pate. Just don’t know what else to do but the level ticks up very very slowly. Hopefully I can tolerate it long enough that my ferritin also increases so I can keep on with it!

[Jazzw in reply to jsy_girl]

Sounds like you’ve got this and doing all you can!

Being chronically undermedicated has so much to answer for. Your ferritin is low because you’re undermedicated so in due course it should all start to improve.

For what it’s worth, I think you’re on the right track.

[jsy_girl in reply to Jazzw]

Oh right - is it a vicious cycle with ferritin? That’s exciting then, that I might support that increasing if I do this slowly enough.

My endo doesn’t believe my ferritin is low... so he won’t understand this slow and steady approach im taking. I wondered if I tell him I was unwell so didn’t start it so I can delay my first blood test 😂

And thank you for your supportive words there - that means a lot because I sometimes feel like I’ve no idea what I’m doing even though I have a plan it feels... renegade... haha.

[HollieBerry in reply to jsy_girl]

I feel overwhelmed too Jsy_girl! There’s so much to take in and it’s hard to balance everything. I’m 5wks into a Liothyronine trial and I’ve taken 2 x 10mcg a day from day one... and haven’t felt even a twinge. I feel like they’ve given me sugar pills! lol

I find it interesting what jazzw said about the iron levels though, mine were low last year but I’ve been taking supplements ever since. Maybe not enough though... and maybe that’s why I can’t feel anything? 🤔

Hope you get your dosage sorted soon x

[jsy_girl in reply to HollieBerry]

Yes it’s a lot to contend with. I’ve just had a negative experience with my GP too who’s refusing to do my latest blood request from my endo. What is that about?!! I know lots of people in here do it all with private tests but it’s just extra hassle.

Wowzer go you! Haha. Maybe they are sugar pills... haha. Have you felt any positive benefits?

I’m feeling a little better today and am going to try increasing my dose to 5mcg. Not much at all is it!! Haha.

Thanks hollieberry though, it’s so nice to have all you guys for reassurance and to compare notes with. It can feel a bit lonely at times this journey we are on!

[thyr01d in reply to Jazzw]

Jazzw that's really interesting and I don't doubt your observations however I have ferritin right at the bottom of the range and had no odd side effects from T3, quite the reverse. Your observations could be perfectly correct but skewed because those of us who have no problems don't post "I've had no problems introducing T3 even though I have low ferritin"!🙂

[jsy_girl in reply to thyr01d]

Yes someone else has said the same that they don’t have any odd symptoms but low ferritin. And my endo wasn’t worried about my ferritin level either.

I think I just need to go slow! Well hopefully that’s all it is...

[endomad]

I can't help I am afraid but just wanted to say I read posts like yours and think wowzers. I take 75mcg t3 at bedtime, I sleep 7-8 hours immediately after, my blood pressure doesn't raise, my pulse is steady 55-65 all night and temp average 35 degrees. I get no real awake feeling, when I use to take it in morning I went back to bed till lunch. Just goes to show how different we all are and how the drs that think just one little levo tablet a day is enough obvs have no thyroid experience. Xx

[jsy_girl in reply to endomad]

Thanks for your reply. It is amazing isn’t it. To be clear it doesn’t feel like a heart impact. My heart rate isn’t affected but it just feels like a buzz. It feels more in my ribs area. I am feeling much better now having been on the lower dose for 3 days. Tomorrow I’m going to go back to 5mcg and see how I get on. I can’t imagine taking 75mcg though hahaha. Not right now anyway.

[endomad in reply to jsy_girl]

I have some sort of resistance to thyroid meds, my thyroid was removed. Iv been on double that but no additional improvement so lowered down to 75 which seems about ok, any lower I get very hypo very fast.

[jsy_girl in reply to endomad]

Further proof we are all different in this game. Best of luck to you

[Lotika]

Just chiming in to be supportive really!

My ferritin is ugly enough that I get an immediate boost in mood and energy from eating liver but I didn’t get any weird side effects on jumping straight in with both feet on the T3. Funny how different we all are!

I think you’re obviously managing this by listening to your own body and getting a plan, so that’s great - back yourself I think you have far more idea what you are doing than you give yourself credit for. There’s something about being inadequately medicated with thyroid which makes us second guess ourselves... Brain fog, probably!

And a private endo is paid to let you do it your way at your pace, so they can back off and shut up in the meantime, in the nicest possible way, of course

[jsy_girl in reply to Lotika]

Haha thanks Lotika. That’s interesting you’ve not had any problems then but are also low in ferritin. Maybe that’s not the reason then afterall.

I am starting to adjust I think. I’ve made myself a spreadsheet so I feel organised now! 😂 it just made me feel panicky that I might not be able to tolerate t3. Does that happen? I’m not sure. Tbh this feeling could entirely be down to me over stressing about it!!

[Lotika in reply to jsy_girl]

I love a good spreadsheet, very reassuring! Re T3, I honestly don’t know, although the advice one generally sees here on building up slowly would suggest that for some people it can take a bit of getting used to?

[jsy_girl in reply to Lotika]

This is true.

Ah man I’m stressed again now. The doctors surgery just rang to tell me the doctor has said he won’t put my blood tests through as my private doctor should do it.

My private doctor is miles away so it’s not likely I can get over there for a blood test right now. And anyway don’t the nhs have a responsibility to do thyroid testing anyway I’m still a patient... eurgh. It’s all bureaucracy and hassle!!!

[Lotika in reply to jsy_girl]

Oh boo re the local surgery! I wonder if the endo would accept a finger prick test kit result? It is not supposed to be as accurate as a blood draw, but... it beats travelling miles in a pandemic? I need to get to the hospital to pick up more T3... it is about 25 miles away / roughly 40 m8ns by car... or it is 3 trains and a bus in each direction... and the Mot ran out on the car... still not quite sure what to do about that. The car didn’t magically become unsafe overnight and MOT is booked, on the one hand. On the other, clearly 6 trains and 2 buses is the law-abiding option, but given I’m going to a blooming hospital, it sounds like I could be on some super-spreader marathon! Not that I think I’ve got it, but if I pick it up at the hospital, I’ve a fair chance of spreading liberally around 3 counties on the journey home! I will make a decision when I have less T3 left!

But why, in the middle of a pandemic, they can’t send it to a local pharmacy, or post the darned stuff, or something, who knows!

[StitchFairy in reply to Lotika]

According to Medichecks, finger-prick samples have been proven to be as accurate as normal blood draws. See here support.medichecks.com/hc/e...

[Lotika in reply to StitchFairy]

Correction gratefully received! Hopefully that will help jsy_girl to convince the endocrinologist!

[jsy_girl in reply to Lotika]

Omg what a nightmare that sounds. Can’t they post it out if you offer to pay the postage? How much after when you need the T3 is the MOT booked?

Yes I did think re finger prick test it’s just the cost of course but it would also allow me to do another iron test. I don’t like finger prick tests as they stress me out. I do also have an ongoing conversation going with medichecks about variations in the results which does bother me slightly but I think indicatively they are right.

[Lotika in reply to jsy_girl]

Good thought re iron - if it has to be a faff and an expense, then you need an upside, I quite agree!

Endos think the hospital pharmacy can’t do anything, but you are right - I can always call and ask! Good to at least be certain...

I am cutting things fine if I leave it until after the MOT and pharmacy run out of T3 again or car fails to pass first time, which given its age is not an impossibility. On the other hand, we’ve probably not done more than 500 miles since the last MOT, which is hardly time for much by the way of wear and tear. I should probably just bite the bullet and go on my super spreader mission given that it is the only option which doesn’t involve breaking the law, but I’m not sure that makes it the “right” one. But, 6 trains and 2 buses does sound like a rollicking adventure in the current circumstances, especially given how bad I am at busses! We shall see. I have the weekend to think it all through!

Ah... I do enjoy a good over-thinking session!

[jsy_girl in reply to Lotika]

Haha I’m the same. It’s so silly isn’t it. I’m sure you’ll figure it out and it will all be fine. Like you say it might be a nice change given our current situation. I imagine it will be quite quiet on the buses and trains so it should be relatively easy to social distance and feel safe enough. My mum recommends squirting vix first defence up your nose and gargling mouth wash to kill any bugs. This is not scientifically based but it makes me feel better when I get home from the supermarket 🤣