Uat, hashi & numbers never stable. : Hi all. So... - Thyroid UK

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Uat, hashi & numbers never stable.

MuffinSx profile image
9 Replies

Hi all. So my tsh is creeping up again and I'm confused about something. Every time my levo is increased my tsh goes down for a month everything is fine then it starts to creep back up again. Why does this happen? Will I get to a certain amount of meds that it will stop going up again and stay stable? Has hashi got anything to do with it?

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MuffinSx profile image
MuffinSx
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9 Replies
Clutter profile image
Clutter

Muffin, if you are positive for Hashi, each attack will destroy some thyroid function which will reduce FT4 and FT3 and cause TSH to rise. There will come a point when your thyroid doesn't function any more and you'll be completely dependent on replacement hormone and dose will stabilise.

MuffinSx profile image
MuffinSx in reply toClutter

That makes sense! Although I didn't have alot of antibodies when I was tested back In June I know some people have ALOT

greygoose profile image
greygoose in reply toMuffinSx

Numbers vary. You were just tested at a point when the antibodies were low. Taken at another time, the test could reveal very high anitbodies. But if you have them, you have them, and they will eventually destroy the gland. It might help if you could keep your TSH suppressed. But a lot of doctors Don't like that.

MuffinSx profile image
MuffinSx in reply togreygoose

I have to keep my tsh suppressed at the moment because I'm pregnant. So it needs to be under 2! I just feel confused because they up my levo then test and say I'm fine but the months after everything just creeps back up again. I just didn't understand it. When I asked my endo I don't think she knew. She just started going on about it goes by your weight how much levo you need! I just wanted to know if it was ever gonna stop or at least stabilise at a certain point of meds

greygoose profile image
greygoose in reply toMuffinSx

Suppressed is 0.001. A TSH of 2.0 is a long way from suppressed.

Your endo doesn't know much about thyroid, does she. It's as Clutter said, the antibodies are slowly destroying your gland, so the gland has more and more trouble producing hormone, so the TSH goes up to tell the gland to produce more hormone, but the gland can't do it. So, you need a larger and larger dose.

She it totally wrong about it going by your weight. I've lost a lot of weight, but it doesn't mean I need less hormone. The weight guestimate is for people who have had a thyroidectomy, just as a starting dose. It doesn't work for people who still have their thyroid.

But, yes, one day it will level out. But does it bother you so much having a dose increase? You're Lucky she actually does increase your dose because most doctors are so terrified of over-dosing patients that they tend to Under-dose. In my ignorant days, I had one keep my TSH at 9.5 for months because he was so scared I was going to 'tip over' into 'hyper'. lol Oh, I can laugh now, but it wasn't funny at the time!!!

MuffinSx profile image
MuffinSx in reply togreygoose

I've seen 3 different endos and to be honest none of them listened. For years my tsh was 8 and I only got increased because I was having fertility treatment and that consultant was like wow no wonder your treatment isn't working u need your thyroid sorted! If he didn't say anything I would t have know. And even then He said endos are funny about things so even he knows.

The only thing that scares me about keeping increasing my levo is that I've read a lot of people are still ill on it and I'm too scared to self med with ndt (obviously I can't now that I'm pregnant anyway) and I still have ALOT of symptoms (severe hairloss being the worse) and I just wondered if there was a point when they said that's enough. I've had a thyroid prob since i was young and I've learned so much In The last couple of months I was just curious!

greygoose profile image
greygoose in reply toMuffinSx

Well, yes, there is a point when they say that. Let's just hope it's when you feel well, and not just when your TSH is 'in range'. Of course, TSH is a useless test - except when it's high - and they should be testing the fT4 and FT3 - which they rarely do! You have to learn as much as you can. Keeping your TSH at 8 was criminal! No Wonder you still have a lot of symtoms. It takes time to get rid of them, even when you're on the right dose.

But you mustn't be afraid of self-treating. So many of us do it, and have more success than the endos! But time to think about that when the baby is here. :)

MuffinSx profile image
MuffinSx in reply togreygoose

I think I will consider it when baby comes and I'm back to "normality". They did test my t4 and t3 to but I did have to push for them. I'm due another test in weeks so I'll see what it is then

greygoose profile image
greygoose in reply toMuffinSx

OK, Don't forget to ask for a print-out of your resluts! Take care. :)

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