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I'm hypothyroid and don't seem to be able to EVER get it under control

(4 Posts)
kickassangel Sat 15-Nov-14 07:07:57

I was diagnosed nearly three years ago. Each time I get checked, my TSH seems to be rising again, so I have the meds. upped, feel OK for a few months, then feel crap, then get tested and my TSH is on the rise again.

I'm actually getting really worried - what if I NEVER get my thyroid under control? Will I just be sick forever?

I've made a doctor's appt after getting the latest results (TSH has climbed from 0.8 to 3.45 in 8 months) but now it's 2 am and I'm worrying needlessly. Of course, I get depression & anxiety when I feel like this, so a rational 'I'm sure it will be fine' is not going to work, is it?

RockinD Sat 15-Nov-14 12:27:57

You say it's 2.00am, but I see your message timed 07:07. Are you in the States?

If you are, get yourself over to www.stopthethyroidmadness.com

If the clock on my laptop's shot and you're in the UK, start with the ThyroidUK forum on www.healthunlocked.com

Lots of advice and knowledge there.

If you've only ever had your TSH tested, your doctor won't actually have any idea what's happening with your thyroid, because TSH is actually a pituitary hormone! You need a full thyroid screen to find out what is really going on: TSH, FT4, FT3 and, if they've not been checked, TPO and Tg antibodies.

Also, you probably won't have been told that thyroxine won't work if your vits and mins are not optimal, that's ferritin (needs to be above 70), B12 (above 500), vitamin D (replete) folate (above 20). Have you had those tested?

I can't get an idea of what's going on here from what you've posted, but if you can find out what's going on, then it should be fixable.

kickassangel Sat 15-Nov-14 12:33:12

Thanks for that - yes I'm in the States, so I'll go to that link.

when I was first tested I had all the different TS3 TS4 things checked. Since then I've had tests (initially every six weeks, but gradually further apart). I actually went to the gp for another (potentially life threatening) issue, and they just ran a TSH to get a quick check.

I've made a follow up appt, obviously. I just don't get why the TSH never seems to have stabilized. Should it fluctuate? How much by? I was led to believe that once I got everything in balance, it was a case of taking the meds each day and I'd be fine, but that hasn't happened for me so I'm concerned.

Off to follow that link and see if it answers my questions. Thank you.

SuperFlyHigh Sat 15-Nov-14 13:37:54

OP I know not much help (I don't know TSH levels as gp not v helpful) but I've been hypothyroid for about a year and a half now and it's only been in last month or so that I've felt better and a bit more normal. Eg the other week I got up an hour earlier 2 mornings in 1 week (would have been impossible before) and I was ok...

The key is regular monthly blood tests to test your levels but also try not to fret about it too much. I was and I swear the worrying may have made it worse!

Sorry that's all I have hope you feel better soon.

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