Welcome!

Sorry for the reason you're here but, glad you found us.

While I didn't have a high TSH, I've read many stories on here and other forums about TSH as high as yours...if not higher.

Since you mention not feeling well for years, I suspect your hypothyroidism went undetected for just as long. Unfortunately, this is pretty common.

And, just as common is a doctor's inability to achieve wellness for the patient.

However, all is not lost.

I found that by learning about my disease, learning how to interpret lab results, keeping a symptoms journal and using all of that information to talk to my doctor has been vital on my path to wellness.

I was able to identify my optimal levels and my doctor accepted my determination when I shared my symptoms journal as it corresponded to my labs.

Since I've never been on the same dose for more than 4 months due to my thyroid being somewhat erratic, my doctor has me get labs every 6 wks.

She has adjusted my dose slightly to maintain my optimal levels and I've been free from thyroid symptoms - it's awesome.

One of the first things I recommend that you do is to make sure your doctor is running the right tests (as mentioned in "Thyroid for Dummies" and countless medical resources). Those tests are the FreeT4 and FreeT3 which are measurements of the actual thyroid hormone levels vs. pituitary hormone TSH.

Dosing should always be based upon the FreeT4/T3 thyroid levels. After all, we have hypothyroidism....not hyperpituitaryism (if there could be such a word).

A thyroid-savvy doctor will adjust the dose until the patient's FreeT4/T3 levels are similar to the types of levels healthy people have: upper half/upper third of the range.

Please feel free to post your results here and we'll show you how to interpret them.

It's entirely possible to feel well while having thyroid disease but it truly requires a proactive patient working closely with a thyroid-savvy doctor.

Best of luck to you moving forward!!

thanks for the suggestions, the symptoms journal & t4/t3 test are great ideas that I'll make sure to do. while on the one hand my symptoms have me feeling very poorly, it hasn't beaten down my determination to find the best solution to get on the path to wellness.

I had a TSH of 100 when I was first diagnosed and then it went haywire with the medication, down to 68 in a wk, then in two weeks down to 16, up to 24, then 32, now I'm at 10. Just a TSH test alone is not a reliable test to lean on. As CD said, freeT4 and freeT3 tests are important. It all takes time. I was feeling better a few weeks back and now am slipping slowly back to feeling bad again, I will have new bloodwork next week. I'm going on three months since being diagnosed and I imagine it will be some time before I am where I need to be. We must be patient. :(

everyone's input means so much to me, thank you all for the great suggestions.

I'm new at this, too, having been diagnosed in May 2012. I know I've written this in another hypoT discussion thread, but I started feeling great when I started levothyroxine then slipped backward. My only issue right now is feeling very cold when no one else feels that way. My temp went down to 96.8 two nights ago. At least my other symptoms have either gone away or improved. It is so helpful for me to know from this group that it takes a while for the medicine to reach an optimal level. I was very disheartened when I started to feel cold again, but I'm hanging in there until my next blood test. I've asked my doctor to do a free T3 and free T4 in addition to TSH.