From Graves to Hypo.

[OTA123]

I was diagnosed with Graves Disease 16 yrs ago. I was also diagnosed with hypthyroidism. Im confused as to how you can have both? I was put on 50 mcg of levo back then and have had increases over the yrs. i recently had a TSH lab of 8.6. Meds were increased from 88mcg to 100. After 6 weeks labs were like 3.9 and Dr thought maybe another increase was good so was put on 125. Turned out to give me anxiety attacks and feeling nervous so she took me down too 100 in which I am currently on. I still am having some anxiousness and symptoms of hyperthyroid. They also had found that I have a multi nodular thyroid thru ultrasound. My question is I am wondering how I can go from Graves Disease to hypo without have my thyroid treated in any way like radioactive iodine and I have not had it removed either? Also can the nodules on my thyroid be causing symptoms of hyperthyroidism while I am considerded hypothyroid?? Any help would be Greatly Appreciated because I am feeling misersable and crazy lately.

[goolarra]

Yes, I think they teach that look in med school.  LOL

Best of luck!

[OTA123]

I take it you have had a Dr look at you the same way too lol! I will look into getting those tests done and report back when I do. Im hoping to get some answers and maybe eventually start feeling halfway normal again:)Thanks again for all information!

[goolarra]

You do have to wonder if the diagnosis was correct.  I hate it when they look at you like you've just sprouted a couple more heads!  LOL  It would be interesting to see what they based the diagnosis on, but after this much time, it would probably be an exercise in frustration.  

It's unfortunate that the guy who named the disease was named "Graves".  At least for those of us with Hashimoto's thyroiditis, all we have to get past is the tongue twister.  LOL

You don't have to have an endo to order FT3 and FT4.  Your PCP can do that.  He may not be familiar with the tests, but if you post results and reference ranges, we can tell you how to interpret them.  Also, you can order tests online without a doctor's order.  That might be a less-expensive alternative if you don't have insurance.  Last I looked, all three (FT3, FT4 and TSH) were about $75.  

[OTA123]

Yes, I agree with the fact that levo isnt used to treat Graves Disease. Thats why I am so confused as to why I was ever diagnosed with it and if it was an incorrect diagnoses? I never did go back to the Endo because I have not had health ins and pretty much just see a primary care Dr or NP once a year to have labs done so I can get refills on levo. I have asked questions about why I would be diagnosed with it and if they will look back at my medical records. They usually look at me like Im nuts because it would obviously be strange for a person to be treated with levo when they have Graves Disease. Like I said its been 16 years since the Endo visit But will never forget being given the diagnoses because I remember how scared I was just from hearing the words Grave Disease and then I researched it and saw pictures of people with Graves Opthamology Disease and that did kinda scare me. I remember my Dr at the time would have me remove my glasses at visits and measure the side of my head around my eye area? I have not gad anyone do that for years now. Maybe I will have to get a copy of all my medical records. I also do need to see an Endo and ask for those FreeT3 and FreeT4 tests real soon. Thanks again for all the input. Its truly nice to know that Im not alone in this struggle.

[goolarra]

Levo is NOT a treatment for Graves' disease.  In fact, taking levo if you are hyper would make your hyper symptoms much worse.  Adding more thyroid hormones to an already overproducing thyroid could kill you.  When you saw the endo, you say you were already on levo that your PCP had prescribed.  After diagnosing Graves', did the endo change your meds?  Did you continue to see him?

Many of us as very sensitive to meds increases and have to take them in smaller steps than others.  Some symptoms can "cross over" and be symptoms of either hypo and hyper.  For example, anxiety and heart arrhythmias can be symptoms of both.  

Be sure your doctor tests FREE T3 and FREE T4.  There are two other tests, total T3 and total T4, and those are what you will get if "free" isn't specified.  They aren't as useful.  

Unless your thyroid is swinging wildly back and forth between hypo and hyper, having it removed typically doesn't solve much.  Once it's removed, you have to be on meds for the rest of your life, and the same problems remain.      

[OTA123]

Thanks for the info. They are only checking my TSH at this point so I will look into having them check the other. I believe that I had undiagnosed Graves Disease for years prior to them finding out. I looked into it after my diagoses and I realize that I have had hyper symptoms as long as I can remember. I always thought I had an anxiety or panic disorder because my heart was going haywire all the time. I found out I had Graves Disease  and hypothyroid disease shortly after the birth of my 1st child at age 19. I wonder if my thyroid did kinda burn itself out and I ended up with hypo? I saw an endo back when I was 19 and I dont exactly remember what bloodtests were ran but he did say Graves Disease and I was on levo given from my regular Dr. at the time. Im 36 now and have had hypo symptoms mostly but occasionally have hyper symptoms too? I have been on 100 mcg since Aug. Maybe I am just sensitive to the med increase? I have lost a job over this because of the anxiety I had when I was increased to 125. I will make a Dr appt as soon as I can to see if the other tests beside TSH will show anything. I wonder if having my thyroid removed would help?? Thanks again for your reply:)

[goolarra]

Graves' disease is hyper.  Levo is not a treatment for hyper, it's a treatment for hypo.  Do you remember which test results were the basis for your diagnosis of Graves'?

Is your doctor testing FREE T3 and FREE T4 or just TSH?

How long ago did you drop back down to 100 mcg?

The thyroid can burn itself out.  It's also possible to have the antibodies for both Graves' (hyper) and Hashimoto's thyroiditis (ultimately hypo).  One is dominant at any given time, usually Graves' first.  However, if you were treated with levo, it's doubtful you were hyper.

There are many different kinds of nodule.  Some can cause overproduction of thyroid hormones.  These would show up in FT3 and FT4 results.