😩 what now?

[Murphysmum]

So I’ve posted a few times recently about my T3 trials to date.

Recently (about Xmas) I decided I had probably missed a sweet spot with my T3 and so decided to lower it and reintroduce (and raise) levo again.

It had been going quite smoothly. I was finding the head pressure on any exertion had returned, hence reintroducing levo which I’ve been taking 75mcg for the last two weeks in order to try to ‘boost’ it up a bit. I have a feeling probably a dose somewhere between 25-50mcg will be where I need it.

Over the last 6 weeks I’ve lowered T3 from 60mcg/day every three or four days to 45mcg for the last couple of days. I had actually intended to keep it like this for a couple of weeks and then do bloods as I haven’t done any for ages. (Since increasing my T3 I had been relying on the ‘see how I feel’ strategy).

However today I am not well! My heart rate is in my boots again, 41-50bpm resting and my blood pressure is showing a high systolic reading of around 140. My bo is normally bang on and the only other time I’ve known it be low was the last time my thyroid hormones were really low.

Does this mean I need more T3? Have I gone too far? I expected to feel the ill effects sooner tbh, how long does it take for T3 to get out of your system entirely?

I just don’t understand what’s going on. Every time you think you’ve cracked it, it goes pear shaped! I’m happy to take more T3 tomorrow but honestly thought I was headed in the right direction.

Any advice? (Other than get bloods done - I just wanted to be settled on a dose for a few weeks at least!)

[SlowDragon Administrator]

How long since you started back on levothyroxine?

Waiting 6-8 weeks after each dose change

If adding in 50mcg levothyroxine, you really want to wait before changing again

It’s common to feel worse at least 4-7 weeks after dose change

[Murphysmum in reply to SlowDragon]

Really? I’ve never felt bad changing levo...well, not until about 15 weeks after I had too high a dose.

I wanted to wait for bloods as I know the T4 reading won’t be accurate but I’ve ordered one just now! I need to know roughly where I am.

I’m assuming this is the T3 drop but I thought it would’ve happened sooner than this?

It’s bloody half term here as well... I have never been right for school holidays for the last three years! Not fair.

[shaws]

I think you should stop and start again. I don't think you are really aware of the 'action of thyroid hormones' on your body. T3 for instance is needed in all of our millions of T3 receptor cells but 45mcg of T3 is equal to nearly 200mcg of levothyroxine (T4). I take 25mcg T3 plus 1/4 but that doesn't mean everyone takes the same dose. We have to listen to our body and 25mcg of T4 isn't equal to 25mcg of T3.

[Murphysmum in reply to shaws]

With respect, I disagree.

Whilst I admit that I think I may have overshot the mark with the T3, I’m very aware of how I react to levo.

Going back to starting T3 a year ago, I felt at my best around 20-25mcg with 75mcg T4. Previously I had tried levo as high as 225mcg but it became apparent it wasn’t working for me, even at that high dose.

I think maybe where I went wrong was assuming when I felt ‘off’ on holiday, I increased T3 where I think maybe I should’ve decreased. Beginner error.

Thereafter I couldn’t resolve the muscle weakness I had (my worst and most obvious symptom) and so continued to increase.

I very clearly felt the difference when I removed levo and then clearly felt the difference when I needed to add some again after about 6/7 weeks. I’m now on the upward slope again as it were.

I think maybe T3 produces more subtle changes? For me at least, and this is why I’ve missed them.

I’ve had 15 years experience with levo but only a year with T3! The thought of stopping scares the living daylights out of me. I stopped my initial dose of 10mcg after about a week when I first started because it gave me hellish headaches. I felt horrendous. When I restarted on 2.5mcg twice a day it was fine. A tiny speck I acknowledge but hey, whatever works eh!

[Hidden in reply to Murphysmum]

Hey Murphysmum, I have a similar experience with needing only small amounts of t3 to start with, like 2.5 mcg once a day a few weeks , that's how I had to go. I think similarly, if you reduce every few days to get from 60 to 45 and lower, you will get bad symptoms. And Levo had no time to build up as of yet at 2 weeks fully, of course, I also start to feel the effects of Levo fast, but it's not yet stable at 2 weeks. Your t3s half life is important, and we all metabolise t3 differently. However, it may take a couple of weeks for cells to get depleted, even though t3 is gone from bloodstream,which was the case for me before, some cells get depleted faster than others. Everyone is different. But a drop of 15 mcg of t3 in 6 weeks can be a lot ,for me it would be really significant. Also your t3 is balancing with t4 so it's impossible to know how they are interacting at this moment. I agree that doing bloods now is not the worst idea to see where you are roughly at this time. I wouldn't be changing t3 now again though,it will be confusing for your body, but then everyone is different x

On another note - at some point you posted that muscle weakness was the only symptom remaining - is this correct? If so, have you been rested for other autoimmune diseases in case it's not thyroid related at all, like RA, lupus etc?

[Murphysmum in reply to Hidden]

Thanks. That’s exactly what I was thinking. I realise the levo hasn’t taken effect yet and I agree 15mcg is a lot but I would have thought I’d feel effects straight away... why now?

Yes, I did post that. Muscle weakness has always been one of my most obvious and lingering symptoms. Goodness knows there have been so many other but none so persistent.

I haven’t been tested for anything else and it has occurred to me but I keep coming back to: T3 did help, it did go away, so why would it be something else? Is my dose not right yet?

You see what I mean? Thanks though, it’s always in the back of my mind 😊

[Hidden in reply to Murphysmum]

That's perfect if it did go away! I was just wondering

You need a little more time and 15 mcg you can start feeling after a while if your cells were saturated, cells don't get depleted straightaway, especially if you had too much t3...I had this before. Go with your gut, you seem to know what you're doing, but see if you can move a little slower as it could be tough otherwise x big hugs

[shaws]

The following link might be helpful i.e. Safely Getting Well with thyroid hormones.

naturalthyroidsolutions.com...

[Lalatoot]

I think your body doesn't know what to expect or what's going on with thyroid hormones. Our bodies like consistency and small slow changes. Patience is the word.

All of the changes you are making at one time are too much. You need to think about what you are doing and why.

As to how long T3 takes to get out of the body - it has a short half life but the knock on effect of that means it takes weeks to fully clear. That is just the T3. T3 tends to lower FT4 and TSH - they take longer to adapt to having the T3 dose removed so they won't settle at their new levels for 6 - 8 weeks.

[janey1234]

Just a thought...is it possible you're going thru the menopause? 🙂

[Murphysmum in reply to janey1234]

Apparently not, my hormone levels are “normal”!

[janey1234 in reply to Murphysmum]

the only reason I asked was that the symptoms you seem to keep bringing up are the muscle issues and head pressure, both of which I too experienced a couple of years ago, which I put down to thyroid, & stress and also my job as a gardener (the muscle bit) but I think now it was actually the perimenopause kicking in, alongside my hypothyroid diagnosis. Looking back, I think the 2 were running alongside each other and I didn't know which one (thyroid or menopause) was causing the symptoms.

I didn't get my hormones tested, so I can't comment on what they looked like at the beginning of the change or even now but I wondered if your remaining symptoms were actually menopause rather than thyroid.

Either way, I wish you well 🙂

[Murphysmum in reply to janey1234]

Spooky! I was working as a gardener too!

That’s what I find it so frustrating now - I was never fit, like marathon-fit but I was strong and on the go all day. Now I’m on the go all day but add in anything extra and I can’t do it, drives me nuts!

How did you find out then? Or is that a stupid question? Purely with hindsight? I have asked before but I just get told no. My hormones were definitely out of whack, so to speak, because I had low progesterone issues alongside my ill health at the start. I started using progesterone cream and all those issues have gone, despite the gp only being able to give me pain relief at the time because my hormone levels were “normal”!

I may look into getting tested again. It’s certainly worth bearing in mind. Thank you for your reply 😊

[janey1234]

Oh I've been following you for a while now, since I noticed our symptoms to start were similar and we were both gardeners...thought maybe the way I was feeling was down to my work. I discovered I was hypo in 2016 & then about 6 months to a year later other things kicked in... not knowing where to put my legs at the end of the day (I could stand & walk but sitting or lying was hard), my periods which had always been normal became embarrassing floods and this 'feeling' in my head ahead that was really hard to explain started ...like intense rage or stress or if you've been crying for hours where you feel your head will explode from the inside out...does that make sense?

I never got my hormones tested as the periodical flooding stopped, I'd go a few months with nothing, then the odd day here n' there, etc...now 2 years on I'm at the stage of nothing for about 7/8 months, the hot flushes that happened for a couple of weeks, again here & there, are now regular. The head pressure has stopped and the legs are fine, which is a huge relief.

Working out which symptoms were hypo related and which were menopause was hard and I'm still not sure which one caused the leg issues or the head ones (which were really scary) but touch wood, I'm in a good place now.

I'm on T4 Levo 12.5 T3 (self medicated), I've also been gluten free for 4yrs now and recently did Dr Michael Mosley's Fast800 where I re-evaluated my eating habits, etc. It's amazing just how foods not only affect our weight but our whole body. It was a real eye opener.

It's a shame you can't just start again...take time out to look after yourself 100%, find that sweet spot and nail this once and for all. Interesting to find out though if the ol' menopause is looming.

I'm sure you've followed all the advice here with Folate, Vit B12, Vit D, Ferritin, etc...

Hang in there 🙂