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Discussion Starter · #1 ·
It's 2 years since I had TT due to thyroid cancer.

In that time I have put on 10kg, lost most of my fitness (I used to run half marathons, now I can scarcely walk 3 miles) and struggled through the day.

Now it is time to fight back.

I've given up waiting to feel like my old self. If this is my new self, I'm just going to have to get used to it and get on with it. My levels are "fine" (though I'm still fighting that one...)

Which is all very well, but has anyone got any suggestions / ideas as to how to go about this without ending up feeling even worse? I've been having a riding lesson each week and I want to be able to do more than 5 (tiny!) jumps before needing a lie down! I've been doing a bit of gentle swimming and walking but that is all. I have no strength - and a spare tyre!

All ideas / suggestions for doing this without a thyroid would be gratefully received.

Many thanks
 

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Discussion Starter · #4 ·
Latest labs:

TSH: 0.02 (0.3 - 5)

Free T4: 25.5 (11-24)

Free T3: 4.6 (3.9 - 6.8)

Currently alternating 150mcg and 175mcg levo, plus 10mcg liothyronine. Oncologist insists TSH is below 0.1.

Dr won't increase T3 medication any further (it's very very unusual to get T3 prescribed in the UK, so I suppose I ought to be thanking my lucky stars to get it at all)

I'm not so much complaining about still feeling rough (although all ideas most welcome!) as trying to do what I can with what I've got! I know I'm not going to get any more T3, and NDT is out completely as far as I can tell, so it looks like I'm going to have to make the best of where I've got to... I don't feel as bad as I did before the T3 was added. At first, I felt tonnes better, but that feeling has worn off.

Thanks for the encouragement, Joplin - I think there's a lack of skill on my part as well as a lack of fitness. Apparently, you're supposed to have your eyes open when you jump!!!

Many thanks for both your replies
 

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Discussion Starter · #8 ·
OK, so I might feel better if I decreased my T4 to 150mcg every day and increased my T3 to, say, 15mcgs? Would that be enough to keep the TSH suppressed?

It feels completely mad to be self medicating, when there's an oncologist out there whose job it is to prevent the cancer from returning. Then again, that's very different from trying to make me feel well, I know. But I do have spare T3 (you can only get 20mcg tablets in the UK) and I'm getting to the point where I'm willing to give it a go.

Would the small increase in T3 be enough? I've got a few months before I see the oncologist again, so can probably get away with a trial for 6 weeks, a sneaky set of labs and going back to what I'm supposed to be on in time for my next appointment!

Ferritin has been tested and was right at the bottom of the range, so I supplement with iron. I supplement Vit D on principle, cos I live in the UK and there's not much chance of sunshine here.

Meanwhile, is there anything I can do which will help with the fitness and strength? I'm fed up of being the victim - time to strike back!

Thanks, everyone. It makes me feel better just knowing it's not just me being a wimp.
 

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Discussion Starter · #11 ·
Yes, I'm wondering if that's what has happened - I felt much better when I first started T3, so I started a little swimming and walking and within 6 weeks or so, I started to slide back into lethargy!

Ok, little and often. I'm off for a swim. Not a marathon...

Thanks, Octavia
 

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Discussion Starter · #12 ·
Quick update: after 5 weeks on 150mcg T4 + 15mcg T3 (you take your blood tests when they are offered, here in the UK!) these were the results:

TSH (0.3 - 5): 0.03

Free T4 (11-24) : 23.5

Free T3 (3.9 - 6.8): 5.0

It's the first time I've ever managed such a suppressed TSH and Frees both within ranges. I know I should have waited a few more weeks, but, as I say, I was offered the blood tests and didn't want to lose the opportunity... Just wondering if the TSH is on the rise (I know, 1/100th!) cos I know that lags behind the others...

I feel ok - not brilliant, but on the whole I can get through the day. I've had a few migraines, which is unusual, and some anxiety, which could easily be attributed to other stresses in my life, but generally doing ok.

So thanks to everyone who helped me adjust my own dose. I'm going to leave it like this until I see the oncologist in November, and see what he says then.
 

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Discussion Starter · #15 ·
I agree, if I could get that T4 down a bit more, I'd very much like to, as it doesn't make me feel good. But I'm pleased that, finally, I'm going in the right direction!

Just wasn't sure if the TSH was going to sweep upwards when I wasn't looking - the oncologist is very fixated on suppressed TSH and I don't want to give him any excuse to put me back on T4 only... He keeps telling me how T3 isn't as good at suppressing TSH as T4, but it seems to be working fine for me.
 

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Discussion Starter · #17 ·
Thanks for the info, Joplin - as you say, I expect we're a few years behind you over here in the UK.

He started out by saying that I was at low risk of recurrence (follicular variant papillary carcinoma, encapsulated, no spread to lymph nodes etc) - but he wants my TSH to be below 0.2. I'm not sure how long this will be necessary - perhaps we will be able to lighten up a bit in a few years?

I don't really want to rock the boat too much, as he might just take the T3 away if I suggest TSH could be higher - leaving me feeling like "death-not-particularly-warmed-up" again!

But if I could sneak it up to the 0.19 mark, that might help...
 

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Discussion Starter · #20 ·
So does that mean that, instead of 150mcg (T4) and 15mcg (T3), I'm more likely to need 130mcg T4 and about 30mcg of T3? Heavens, I can see why I'm struggling if that is the case.

I will try and talk to my oncologist about this. At least when he refuses to increase my T3 any more, because it "doesn't suppress TSH as well as T4", I can point out that I've already done so and it has been jolly effective at TSH suppression!

I've never had Reverse T3 measured. Are there any members in the UK who've managed to get this test? It does sound that it's likely that this is indeed the problem - all that T4 has got to go somewhere.

I suppose the next step is to reduce the T4 again to alternating 125 and 150, and increase the T3 to 20mcg (or perhaps 25mcg?)

I wish we had access to Armour.

Thanks, Andros, for all your help. If it wasn't for you and this forum, I'd still be stuck dragging myself through the day, more than 2 years after the event.
 

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Discussion Starter · #22 ·
Update: blood test results 11.11.14

TSH: 0.02 (0.3 - 5)

FT4: 24.5 (11 - 24)

FT3: 5.4 (3.9 - 6.8)

So the FT3 is going in the right direction since I increased my T3 to 15mcg and decreased my T4 to 150mcg - it's gone up from 5 to 5.4. I inexplicably took my T4 before the test, which I don't normally do, which explains why it is a bit higher than it was last time (23.8).

However, ever since I increased my T3 (from 10mcg to 15mcg) I have been having terrible problems getting to sleep. It can be 2, 3 or even (last night!) 4.30am before I get to sleep. Even after lots of exercise, when I'm exhausted, I get to bed and feel strangely awake and unable to relax.

There are lots of stresses in my life at the moment and I'm sure they are contributing to this problem. However, I do have to ask if it could be linked with the increased T3? I don't seem to process medicines like everyone else (hence the massive non-conversion issue). This is really getting to me, and is undoing any good work that the extra T3 might be doing. I'm at the point of backing off back to 10mcg to see if it improves. Or will I get used to it? I've been on this dose for a couple of months now.

All ideas welcome from a terribly tired Brit!
 

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Discussion Starter · #24 ·
Yes, not being able to sleep is horrible - and it's been going on for a couple of months now, so I constantly feel tired regardless of my thyroid levels.

Strangely, my T4 has been much higher than that and I've not had any difficulty sleeping - which is what made me suspect the T3, as it's the only thing that's changed.

I guess that the T3 has such a short half life that, if I reduce it, it should become apparent fairly quickly if that was the answer...

I've got an appointment with the oncologist on Monday, so I suppose I could ask him. Not keen as he wasn't exactly rushing to put me on T3 to start with and I don't want him to have a reason to say it's not for me and take it away again...
 

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Discussion Starter · #25 ·
I've read about some people who take their T3 before they go to bed - and reckon this makes them sleep better.

This seems totally counter-intuitive to me - but thought it was worth asking if anyone has any experience of this?
 

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Discussion Starter · #26 ·
Quick update: I saw the oncologist this morning and he is happy for me to continue with 15mcg of T3 and reduce T4 to 137. He doesn't think either would be causing my insomnia, but is willing to try to reduce my T4 further if that is possible.

Result!
 

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Discussion Starter · #29 ·
Quick update: now on 135mcg T4 and 20mcg T3 and I've just been for my first 'run' in 2 years!

Many, many grateful thanks to Joplin and Andros for helping me out. I feel like I'm beginning to get my life back...

You'll note the 'run' went in inverted commas, as there was an awful lot of walking involved, as Devon is pretty hilly and a run which would have taken me half an hour took 45 minutes, but at least it was a start.

Just to say to anyone who's struggling right now, stick with it and listen to these lovely people and you will get there. Even if I'm shattered tomorrow, at least there's a good reason for it.

Blood tests in a couple of weeks - oncologist was happy for me to try to re-balance the T3 and T4 so long as the TSH stays suppressed. Result!
 

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Discussion Starter · #32 ·
Yes, that was the reason for my decision to walk up the hills - it had nothing to do with chronic lack of fitness, of course! The current motto is to "live to fight another day" as opposed to ending up completely exhausted. It was just so lovely to feel like giving it a go.

Might not be so sure tomorrow...
 

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Discussion Starter · #33 ·
Cautionary tale: my tiny bit of exercise seems to have sent my thyroid levels plummeting downwards! Now operating through a fog of tiredness again. When will I learn?
 

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Discussion Starter · #35 ·
The problem is, I didn't go all out. I did 2 x 30 minutes of run/walk a week, for precisely 3 weeks, and my thyroid hormones seem to have disappeared, leaving me so tired and glum that I can't even walk!

Sorry to moan - just feeling like I can't win. Now I feel much worse than I did before - and my T4 level has nearly halved, my T3 is below the bottom of the range (despite taking 15mcg of the stuff every day) and I'm back to square one...

Grrrrr!
 

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Discussion Starter · #38 ·
So just a tiny bit of exercise (tiny to me - I used to run half marathons for fun!) could have that much effect on my levels?

My GP told me yesterday that it couldn't possibly be that - he appeared to be accusing me of stopping taking the medication, but perhaps that was just me being manic! Why on earth I'd want to send myself hypo, I don't know...

Hey ho, time to up the meds and try again.
 
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