I had a bout of Subcute Thyroiditis in 2013 and since then my TSH which did return to normal has got slowly higher and higher and is now at 7.3 although i have normal within range T4 and T3 ve also been tested twice for antibodies and which have been negative (2013/ 2017)
I have many symptoms of subclinical hypothyroid and and the Endo has reluctantly agreed a trial of 25mg of levothyroxine for 3 months.
If anyone could let me know their views on this and their experiences . Did help ? make a difference ? ect
Thank you
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jacgood63
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Sounds like your endo is setting you up for failure. 25 mcg is probably going to do nothing for you. It's too low a dose. And, staying on it for three months won't help, either. it's too long. Normally, you would have a blood test and increase in dose after six weeks.
Just because your Frees are in range, doesn't mean they're normal. Do you have the actual numbers? Someone with and FT3 at the top of the range is going to feel very different to someone with it at the bottom of the range, so it depends where in the range it falls. But, with a TSH of 7.3, you are hypo, whether your endo likes it or not. In actual fact, you are hypo when your TSH hits 3.
So, play him at his own game. Get retested after six weeks, and say that whilst you found that tiny dose did help a little, you feel that you really need an increase in dose. Don't give him the satisfaction of saying after three months that the levo didn't help at all, because then he well say, 'there you are, you see, I was right! You aren't hypo!' Use a bit of endo psychology!
Been on the 25mg of Levo for 2 months now and have to say what a great improvement .I feel so much more "alive" and I've stopped getting the awful hot flushes ( which i never associated with being Hypo) I've managed to lose one and half stone on Slimming World and now walk everywhere without getting tired or aching. I had a blood test with the GP after 4 weeks which showed my TSH was down to 2.5 and have an appointment and a further blood test due middle of October with the Endo. Gp was reluctant to increase my dose as it dropped so quick and i agreed to wait till i see Endo. I would appreciate your advise on whether to push for a increase or remain on 25mg ( Have been hyper 4 years ago - hence the Endo's caution .
Oh, definitely push for an increase. Your TSH is still too high for someone on thyroid hormone replacement. I'm amazed - but very happy for you - that you have done so well on such a tiny dose.
You say you were 'hyper' four years ago? What exactly do you mean by that? Did you have any treatment for over-active thyroid? Or was it just that your TSH was low? It doesn't sound like your endo knows much about thyroid. You can't 'go hyper' if you're hypo. Either you were hyper and had your thyroid removed and became hypo, in which can you cannot possibly 'go hyper' again. Or you were hypo and over-medicated. But, you gave the impression that this is the first time you've been treated. So, I don't really understand.
In any case, in the next three weeks before you see your endo, your symptoms could come back - you shouldn't really wait that long for an increase - but don't let that put you off, it just means that your really need that increase!
I had a bout of thyroidistis ( De Quarvains) in 2013 - it caused my thyroid to go hyper - then hypo then back to normal after 6 months( no medication taken although was offered ) . Then gradually over the last 4 years my tsh and gone slowly up to 7.5 - I think i was warned this could happen in less than 5% of people . - The Endo because i had normal T4 and T3 when last checked was worried any higher dose would make feel hyper and those symptom are far worse than being hypo in my experience . Thanks for the reply
Feel hyper, not go hyper? Right? So, he prefers you suffer the misery of feeling hypo?
You've got a long, long way to go before you're going to be over-medicated. In the meantime, you need an increase in dose because of the damage low thyroid hormone/under-medication can do to the body. If you start to feel hyper - but be careful, a lot of symptoms cross over from hypo to hyper - you can always lower your dose again, no problem. But, his present excuse for keeping you on a low dose is not valide. Tell him you want an increase, and he should go back to school for a refresher course on thyroid!
All they look at is your T3 / T4 if they are within normal they don't seem worried about TSH unless it's above 10 !! She did run loads of other tests but nothing explains why my TSH is high whilst the other tests are normal - At least i got treatment - have a feeling many subclinical people don't
Yes, I read that, but you are now hypo, and need treatment. You did ask for people opinions, and this is mine : your dose is too low, and - as I said - is not likely to make you feel better, and could make you worse. Whereupon, your endo will use that as an excuse to deny your need for levo, and stop the trial.
That is often the way it works out when endos give three month trials - which is a nonsense, anyway. That's not how hypo is treated. Unless you are very old and frail, the starter dose should be 50 mcg, which should be increased by 25 mcg after six weeks. Putting you on a sub-starter dose for three months, with no increases, is setting you up for failure.
It could work, of course. It could make you feel better - someone posted on her the other day about her three month trial of 25 mcg which has made her feel much better. But she still has to see the endo and try to get an increase!
But, the odds are that, in your case, that won't happen, and you won't feel better. So, if you want to keep your levo, be prepared to fight your ground.
I'm not just being negative and nasty, I've seen a lot of these endo tricks since I've been on here. The truth is that they really hate diagnosing anyone with hypo, and even more having to treat them. And they will lie till they're blue in the face with all sorts of stories to avoid having to do that. Just be aware, and be prepared!
UPDATE : I saw the Endo in Mid October my new results being THS 0.78 and T4 19.4 - feel great and happy to stay on 25 mg with regular reviews with the GP - weight loss now 2 stone
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