Hubby (Paul) went to see the Endo on Monday at Musgrove. I have to say she was very nice. She said, as we know, that his levels were far too high, and rather than just stop taking Levo he should reduce it by taking 25mcg daily for three weeks, then half that again for another three weeks, then stop and she will look at his blood levels after three months on no medication. Seems like sensible advice, but God knows what he is going to be like. I suppose it is the only way. Any comments would be much appreciated.
Love Sheenah xx
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sheenah
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Yes, its all a bit of a worry. She did say that it's not Graves and not Hashimotos as his TPO was not elevated. He is dreading it as he has felt so well lately, and has no idea why his T4 is so high. I can see where she is coming from - back to square 1. She is actually the head honcho at Musgrove but is off to have a baby any minute, so will not be able to follow through - fortunately we have this forum. Thanks again.
Personally I would just stop the levo altogether at the moment with T4 and T3 that high it will be making him feel more unwell. This happened to me and I stopped the levo and had no ill effects. Mine turned out to be Graves (positive TSI test) but your husband’s could be a hashis flare (he could still have hashis with a negative ab test). Or thyroid nodules.
The endo should be requesting a TSI ab or TRab test. And if that is negative doing a thyroid ultrasound to check for nodules (this should also confirm hashis if it is present I understand).
I would try to see someone else as this endo doesn’t know what they are doing. Or you can test privately - Medichecks do.TSI TRab test. You can also get the ultrasound privately if needed.
She checked his neck for nodules and found none present. What do you think about a T3 only approach? it is getting hold of it however in a small dose - yes I will see if I can find another Endo. Thanks again
If his T4 and T3 are over range he doesn’t need more T3 or T4 at the moment. I would stop. I felt better when I stopped my levo quite quickly.
Extra thyroid hormone will just make him feel worse as his thyroid hormones are too high.
You need to work why this has happened. The only way of doing this is as I’ve described above ie TSI/TRab test & thyroid scan. I don’t believe you can rule out nodules from a thyroid exam.
Just keep an eye on his symptoms and if you notice any unwelcome changes retest to see what is going on.
Well, as I'm sure I've said before, she cannot rule out Hashi's entirely. I don't remember how many TPOab tests he's had, but has he ever had his Tg antibodies tested? They could be high, and that would mean Hashi's. Plus, some Hashi's people never develop high antibodies. Their Hashi's is diagnosed by an ultrasound when enough damage has been done to show up. Has he had an ultrasound?
No that was not offered. I can't see that his Tg antibodies were tested in recent results. I have found a private Nuffield Endo in Taunton but it is expensive. But if he starts looking like he is going to be ill then we will go down that route fairly quickly. I will let him read these posts.
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And good luck! xx
visit to Endo on Monday
Daughters results after altering her dose.
Can too much t3 cause over stimulation that eventually leads to episode of extreme exhaustion 
12yr old with high TSH levels...
Endo visit
