Mysterious rise of T4

I'm posting my results since last year, when I had a severe 'hyper - type' reaction to T4 and had to stop taking it.

March 22 2012 - 4 days after stopping levo and feeling much better:

TSH 2.19 (0.35 - 5.5)

T4 12.9 (10.5 - 20)

T3 3.6 (3.5 - 6.5) Barely in range.

(In retrospect I probably should have cut down rather than stopping the levo altogether, but it was a weekend when I had the horrible bad reaction and no GP to ask. Didn't know about Thyroid UK then :-(

April 25 2012

TSH 142.24 (0.35 - 5.5)

FT4 10.0 (10.5 - 20)

T3 didn't do.

Despite these horrible results, I did feel well for about a month, presumably because I still had the meds in my system.

Aug 23 2012

TSH 150 (0.35 - 5.5) According to GP this is as high as they test, so it could have been higher.

FT4 10.2 (10.5 - 20) Up a fraction from the last test, though not taking any T4

FT3 3.4 (3.5 - 6.5)

At this point I was of course feeling like hell, and had started seeing the private endo. We tried various NDTs but they seemed to make me feel worse, and in the end settled for a very small dose of T3. She said I might not be able to tolerate much until my iron levels in particular improved. I was also working on my D3 and B12 levels, which was difficult as I don't tolerate supplements well either. Pretty useless all round really, but I am still working on those, and have had some success with transdermal iron.

The endo also said my T3 and T4 levels weren't moving around all that much, so I might get away with a small dose. I was so afraid of making myself feel even worse that I began with only a crumb of T3, and after all the messing about with trying NDTs and 4 attempts to get back on Levo, I started the T3 round about December 2012.

8 April 2013

TSH 95.3 (0.35 - 5.5) Still horrible, but at least going down

FT4 8.0 (10.5 - 20)

FT3 4.6 (3.5 - 6.5)

1 Aug 2013

TSH 41.0 (0.35 - 5.5) Still horrible I know, but going down even on a tiny amount of T3

FT4 9.0 (10.5 - 20) Gone up a bit

FT3 - Didn't do! Which seems mad as I'm taking T3. Really annoyed about that.

I'm wondering why my FT4 has gone up, although I haven't been taking any? I know it's still low, and I might in theory benefit from adding some T4, but I felt so bad when I tried to get back on it even in an NDT, that I wondered if I had become intolerant to T4 in any shape or form.

Does this fluctuation have any significance at all, or not if one is taking T3 only? I can't say I feel well, but in comparison with a year ago things probably have improved a little. My GP has suggested upping the T3 a bit (after refusing to even entertain it at the beginning), and I can see the sense in this, if I can do it.

I'm also wondering what I should concentrate on in order to feel better - getting the TSH down, getting the T4 up, or getting the T3 up - it does seem to be creeping up but I don't know what it is at the moment. Dumb question, the answer is probably all three of the above. :-)

I would appreciate any comments or advice, and apologise for the long post.

Kanga xx

2 Replies

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  • Hi Kanga

    Sorry this was missed! :(

    I think T4 is fairly redundant once you are on T3 only, so if it was me, I would be looking at getting the T3 levels up. Bit difficult if they are not testing it though! DOH - idiots!

    How much T3 are you on?

    L

    x

  • Not to worry Louise, I thought it would probably get lost. I'm only on about 5mcg a day - a quarter of a 20 mcg tablet. I take it at about 3.30am to 4.30 as I seem to be able to get back to sleep and later don't have to wait for my morning cuppa and other tablets I take. And it doesn't seem to make me feel worse (famous last words), which was what I feared the most. I'd given up hoping for that 'lightbulb moment' that some people have.

    However, sometimes the alarm doesn't wake me up - I find I've put the bedside light on and boiled the kettle I keep by the bed (don't like cold water), presumbly while still asleep - but haven't taken the tablet I keep at the ready. Then my husband wakes up in a panic wondering what's going on - so there's still some refining to do! :-D

    I keep trying to up the dose but can't seem to tolerate it. And taking a second dose later in the day is a bit of a problem because I eat so little I have to kind of graze all day in an effort to get enough food in.

    I was amazed my TSH had gone down so much (though not enough I know) on such a tiny dose. Going by the last T3 rise when it actually was tested, it should at least be above 4.6, which will be the highest it's ever been since I began asking for my results. Is there an optimum reading do you know? Is it possible for it to go too high? Though I doubt if I'm at that level yet. It seems crazy that they didn't test it as they have most times before, even when I was on T4 only. Idiots is about right.

    I don't actually feel very well, but I was encouraged to see the TSH going down and the T3 going up I just wondered why the T4 went up on its own and if this meant anything. If it's fairly redundant, I probably won't struggle with trying to add T4. Maybe I could get a T3 test from Blue Horizon.

    Thanks for the reply.

    Kanga x :-)

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