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Hypo people - help pls - reaction to first dose of Thyroxine

18 replies

jasperc163 · 11/07/2013 19:46

Hi - I posted on here before about a possible borderline thryoid problem and headaches. Endo eventually prescribed 25mg (though typically my TSH dropped from 5.25 to 3.11 in the last test. However my FT3 is just below the bottom of the range at 3.7 - so still suggestive of a problem?).

I took the first tablet yesterday morning first thing and felt ok all day (or rather much the same as usual!). Then last night, about 12 hrs after, I started feeling panicky, palpitations, generally wierd and had much more trouble than usual going to sleep. I didn't dare take it this morning as I had a 2hr drive to a meeting to do.

I have low iron (ferritin 32) which i am working on but I know this can cause an issue with thyroxine. I can't work out if i shoudl therefore stop altogether or try again at a half dose or something (I have read some posts where people say they feel funny for a week and then are ok)?

I am absolutely gutted as I was pinning so much on this and my life sucks at the moment. I can't work out why i still feel so bad now as its 36hrs since i took the tablet.
can anyone help?
please?

thanks as ever

OP posts:
lemonandice · 12/07/2013 03:03

I've not experienced that before, but I have heard of people who get those kinds of effects when their dose is too high or they've accidentally taken two tablets instead of one.

Try a half dose and see how you feel on that? Maybe you can do it at the weekend so that if you feel weird you don't need to get to work? If you can handle half, try that for a week or so then perhaps go up to a full tablet. Failing that, badger your doctor again because you should not have to feel like that.

Sorry you're feeling so crap. Sad I felt dreadful until I was diagnosed and started taking the thyroxine. Now my dosage is sorted though, I feel a million per cent better. That said, my low iron also played a big part in me feeling naff- are you taking supplements for that? I read somewhere that low iron exacerbates hypo symptoms, and hypo inhibits iron utilisation, so you have to tag-team and up your iron massively to get the best from treatment. Flowers

Ruralninja · 12/07/2013 03:58

thyroxine can take a few weeks to work as its in a slowish feedback mechanism so it would be quite surprising to get that response from one dose. It could be your hypothyroidism giving you the palpitations as having it makes your heart work that bit faster - you may have also been feeling anxious about the medication? can you talk to your gp to put your mind at rest?

Ruralninja · 12/07/2013 04:00

also 25 mg is a small dose anyway - enough to make you feel better over time but I remember it taking about a month to notice the improvements

SunnySandyCracks · 12/07/2013 04:43

Have you ever had these symptoms before taking the meds? I get similar ones when my levels are out of synch, funny enough it's only when I lie down to go to sleep Confused
Did you take the tablet on its own, no caffeine or milk for at least an hour after?

At such a low dose I couldn't imagine it being the tablet unless its a reaction? I would phone the endo for advice if the same happens at the weekend. Hope it doesn't.

mercibucket · 12/07/2013 09:00

although everyone says about the half life etc, a lot of people do seem to react that way at first. i also started on 25mcg and felt as you describe. it settled down quickly though. i think my body was so starved it over-reacted.
did you ask about trying t3 if it is your t3 that is low? is t4 level ok?
definitely get ferritin higher. was b12 and vit d ok?

jasperc163 · 12/07/2013 09:30

Thanks everyone, and thanks for the flowers Lemondice :-) - I have taken just over half a tablet this morning and will see. I do get palpitations sometimes anyway but not in this way with the agitated panicky feeling, and feeling wiped out at same time. Fine at the moment but it took 12hrs to happen last time. I have absolutely no doubt that it was the thryoxine though.

Mercibucket - did you just carry on at same dosage? How long did it carry on? Were you extremely hypo when you started or more borderline?

My FT4 is not high - 12.7 and has consistently been at that level (4 different tests but against different ranges which place it anywhere from right at bottom, to just under middle, to nearer to the top). So I think the ranges are messed up and my understanding is that 12 is not a great number and that most ranges go up to about 22. My FT3 was 3.7 (range 3.8-6.5) and so that puts the conversion a little low but not drastically so i think? My problem is my tsh dropped from 5.25 t0 3.11 (by far the lowest of 4 tests) at the last test so endo is a bit on the fence and I think i have little chance of getting any T3 atm on the basis of that. I have fought for months to get this and so it really hard to know what to do now.

Vit B12 and D3 are ok though i supplement anyway but yes ferritin is a work in progress.

OP posts:
jasperc163 · 12/07/2013 09:33

Sorry FT4 was 12.3 (range 7.45-21 in this case though I have had one where upper range was 14.4!)) and FT3 3.7 (range 3.8-6). First test I had FT4 was 12.7 and range was 12-22).

OP posts:
mercibucket · 12/07/2013 09:36

when i started, tsh was about 12 i think, t4 was below range.

actually, i think you do need the levo if your t4 is that low in range too. i wouldnt worry too much about the tsh test. when you are going hypo, it bounces around from high to low as the thyroid splutters into life every now and then. did you have antibodies? that would be a good indicator of needing levo

yes, i just kept taking the pills. i felt too crap not to and my case was straightforward on the bloods so i wasnt worried.

its good that you have an endo. hope they are able to put your mind at rest about the initial reaction. i have read about lots of people feeling like that yhe first week

mercibucket · 12/07/2013 09:38

oops x post about t4, so sometimes it is low in range sometimes not, but always 12? wonder why always 12? how come you have had lots of different ranges? dif doctors or private tests?

freelancegirl · 12/07/2013 09:43

I get palpitations when hypo and like others have said thyroxine does take a while to work - a few weeks. It might well be because you're hypo rather than the medication. Also it could potentially be anxiety related as a result of both being hypo and the idea of taking medication anyway. I would say keep taking it and you should feel better, 25 is such a tiny dosage. I'm on 125 now and don't feel anything when I take it.

jasperc163 · 12/07/2013 09:52

Thanks freelancegirl - it was a totally different feeling, so i don't think it was hypo or anxiety.

Mercibucket - yes i can see yours was clear cut, my problem is partly i think that certainly GP would say i dont have a problem and endo is on fence now due to recent tsh (she doesnt seem to care about ft3!). So I don't know if i need it. But then my FT3 does not look right.

When I say FT4 always 12 I mean that I have had 4 tests in last 3-4 months and they were 12.3 -12.8 or inbetween. In 2011 I had a FT4 of 11 (but that was against the dubious range of 7.7-14.4). I think it is interesting that my FT4 seems consistent but the ranges are all over the place? I have had 4 tests - 1 NHS (with the dubious range), 3 private - 2 from one hospital via endo and one from another via neurologist due to the headaches. My FT3 is also pretty consistent - 2 tests - one at NHS lab 4.0 (range 3.9-6.5 so bottom of range) and one at private endo lab 3.7 (range 3.8-6).

OP posts:
jasperc163 · 12/07/2013 09:55

PS sadly no antibiodies - 16 (range 0-60) though my mother is hypo

OP posts:
jasperc163 · 13/07/2013 20:17

now getting worse neck pain and achey arms:-( Could this be another thyroxine reaction?

OP posts:
ClayDavis · 13/07/2013 22:26

I don't know about the neck pain and the achy arms.

I had a similar reaction to levothyroxine when I started taking it with unexplained anxiety and panic at night. Do keep and eye on it. I became suddenly and inexplicably suicidal on a couple of occasions. I stopped taking it and haven't had a problem since. I think you need to try an contact your endo if you can.

RockinD · 14/07/2013 10:32

If you do contact your endo, you need to try and avoid a situation where you are left without treatment, because you are very definitely hypo. This could be an issue as she does not set much store by FT3 results and may not wish to engage with the fact that yours is below range.

Remember that your TSH should be around 1 and your FT4 and FT3 should both be in the top third of the range.

jasperc163 · 14/07/2013 16:38

Thanks rocking, you are right and I think this is what will happen because my tsh went down so much. I can't carry on with this though, still got bad head but additional aches and pains that are too much, though palps have calmed a bit. I think she is going to say I need to stop and get ferritin up first as my understanding is this could be causing my reaction? I may have to do this and go with neuro prescription which is now nortryptiline in hope that it helps in short term as my quality life is going through the floor and family life really suffering.
I think the ft3 got included by lab by mistake as she didn't check it first time, so it's only luck that I didn't have just a ft4 in range and signif lower tsh on the results. I still don't get why she thinks it isn't relevant?

Out of ideas, and hope..

OP posts:
cls77 · 15/07/2013 14:05

I take 200mcgs of thyroxine daily, and have taken 300 before. I also have Perncicious Anaemia and take Iron in a constant large dose for this, and I havent had any reactions like your explaining? I would ask your Endo, to see what they advise? Good Luck!

jasperc163 · 15/07/2013 17:28

thanks Cls77 - bang goes that theory then ! :-(

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