# Rising TSH into Hypo after Graves Remission



## graves84 (Oct 7, 2013)

Hi,

I am a 29 year old who was diagnosed with Graves at the age of 13. At the time my heart rate was 140 BPM resting and I was getting severe migraines before dr's found it. I missed so much school with dr appts and being sick that I had to be homeschooled for much of my teens.

I was on various levels of Methimazole for many years, before finally leveling out at age 22. I always refused radioactive iodine and was happy I did.

I was tried off medication at age 22 and for the past 7 years have had a stable level and felt great.

Recently I had gone to the primary care dr with complaints of weight gain and fatigue, joint pain etc. 
I eat healthy and work out 5 times a week so there is no explanation for the quick gain.

Upon testing my TSH etc he called and said "it's normal your fine".

I looked online at my test results and they show a 3.66 TSH level. 
In March I was at a 2.99 
My TSH from 2009-12 had been a stable 1.19 (that explains the weight gain!!)

Why is the DR not concerned that this is climbing into hypo given my past? In a few months at this rate I will officially be hypo given the "normal" ranges.

I am very upset that he is refusing to listen to my concerns or even try me on a small dose of Synthyroid to see if I feel better.

What should I do in this situation?


----------



## Lovlkn (Dec 20, 2009)

You need to go to a new doctor.

Something is going on - your body sounds like it has gone from hyper - to remission - to hypo.

You might try going to an endo and sharing your history.


----------



## jenny v (May 6, 2012)

Your story sounds very similar to mine.

Ten years ago I was diagnosed with what they thought was Graves (I had all of the classic symptoms--extreme weight loss, fast heart rate, jittery-ness, etc.) and they put me on anti-thyroid meds. Things evened out, I got off the meds and did fine for a few years, and then I went hypo for no good reason. Turns out the first doctor was wrong and I never had Graves at all, it was the beginning of Hashi's. Many Hashi patients start out with a severe hyperthyroid episode and then start going hypo.

Do you know what kind of tests they ran to diagnose you with Graves? At the very least, I think you need to find a new doctor and make sure they test Free T3 and Free T4, not just TSH.


----------



## graves84 (Oct 7, 2013)

I'm looking for one- the wait is almost 90 days for a new one. blah I'll be a total fat ass by then lol


----------



## HotGrandma (Sep 21, 2012)

Ditto finding a new doctor. Would also recommend having your antibodies checked as well.


----------



## kristiemarie (Oct 7, 2013)

TSH in graves patients really isn't a good test, IMO. Your TSH may never be "normal" depending on where you are in your cycle. I really believe that TSH tests are for people with normal thyroid function. LOL

I had a TT and I know my levels will never be normal. My TSH could get sky high and it doesn't mean a dang thing since I have no thyroid to stimulate. And you may actually have Hasimoto's now.

You need to be looking at Free T3 specifically and TSI, which is the antibody Graves/Hashimoto patients produce. If your Graves antibodies aren't present right now, that would indicate remission, which sounds like your case. But since you also sound very hypo, you may have antibodies for Hashi's. It's not uncommon for people with one autoimmune disease to have more.

I'd get in and get checked for sure.

Good luck with this. You're case sounds like mine (except I'm only Graves). I was in remission for a long time and didn't give it another thought. Until it hit me again like a ton of bricks. AI disorders suck.


----------

