I was wondering how long it usually takes for a dosage change of thyroxine to have affects? In this case a lower dose (37.5mcg to 25mcg)
Even after a couple of days in i noticed the changes in my daughter, brain fog, agitation, more emotional, tired and 5 days in, her school have said she is doing things ‘out of character’ and they have noticed the brain fog and hyperactivity.
Is it normal to react this quickly and why are some of them hyper symptoms as well as hypo from the reduction in dose? I don’t think shes having a hashi flare, it clearly coincided with the reduction in thyroxine.
Thank you
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Dolphin40
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Do they ever test her FT3? Could be that she needs her FT4 high to get enough T3 because she doesn't convert very well. And, if you reduce the levo (T4), the T3 will reduce as well, making her more hypo.
Her T4 needs to be v high to have a good T3. But i cant keep her on too high T4 for this - its not good for her body iv been told and she already has heart palpitations and SVT. Plus her hair loss could be because her T4 has always been above range since starting thyroxine.
I spoke to you before about it. Her levels are all over the place and dont make sense
Ah, yes! She has Hashi's, doesn't she. So, it could be that her rise in T4 has nothing to do with her dose, but she's been having a Hashi's 'hyper' swing. Do you know if her doctors understand how Hashi's works? If they don't, then they're going to cause more problems than they solve by messing around with her dose.
It would mean shes had a flare every time shes been tested then which she hasn’t. I can tell now. She has different results on the same does a month later and its all very random. Going off symptoms she was good on 37.5 but the hair loss continued. Her T3 has been top of the range on this dose but also bottom of the range too so its hard to know whats best 😞
Yes, it is hard. But, this is typical Hashi's. Levels jump around.
It would mean shes had a flare every time shes been tested then which she hasn’t. I can tell now.
Well, saying that doesn't tie in with saying her levels are different on the same dose. If the levels go up without changing the dose, it has to be hormone coming from the dying thyroid cells. It may not be a full-blown, extravagant 'flare' - or swing - but it has to be hormone coming from the thyroid. Levels can go up and down due to the same dose, that's not logical. And, he thyroid won't be over-producing hormone, because the thyroid hormone replacement will have stopped its normal production.
Her Endo said the thyroxine tops up thyroid function but doesn’t replace it? That would make it hard to get dose right. If it weren’t for the hair loss id keep her on 37.5 but they were adamant it has to be reduced 😞
Yes, they do say that. But, the latest thinking is that that's not true.
But, even if it were true, the thyroid cannot go from under-producing to over-producing like that.
It dose make dosing more difficult, yes. And, even more difficult when it's your child and not yourself. And, doctors are not best placed to know what's going on - unlike yourself who spends so much time with her. So, you really have to gain the confidence of your doctors so that they give you more leeway to control the dose yourself. I don't know if such a thing is possible, but it should be.
If they told you that thyroid was simple - especially with Hashi's - then they were lying or unconscious of the complicationss of the thyroid. It's very complicated, I'm afraid. And, I don't expect they have much experience of children with Hashi's.
More that the T4 was too high and they said it could put stress on her body. She also has SVT. T4 always high so they insisted she reduce dose. Hair loss so bad now that its been suggested its because shes on too high dose?
I've recently had 2 x dose reductions of 12.5mcg Levo a few months apart. I could feel a small but noticeable difference on the 2nd day and a real difference by day 5, so it's perfectly possible even though in theory the long half life of Levo should mean you cant really tell on the second day.
I also notice brain fog by about 2pm if i forget a dose of Levo in the morning, and i am not alone , a few others on here who i trust to be objective say the same thing. I've been on Levo 20+yrs and I'm certain this is a real effect for me.
As for' Hyper' /'Hypo' type symptoms some of them can be similar with too much or too little medication. I would say that for me digestion speed is quite reliable ie. less frequent bowel movements followed by constipation a week later is 'hypo', and more than one bowel mvt a day is 'Hyper'
But having said all this, i think you have to wait several weeks to really asses the effect of a new dose. I don't trust myself to be sure until about 10 wks have gone by.
And personally i think that just the process of changing the dose is unsettling on the body for a while, regardless of whether the new dose is better or worse.
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