Thyroid issues

[Ash76kel]

I was diagnosed hyper/graves. I have been on Methimazole for awhile and slowly weined down by having frequent labs done. 6 weeks ago I called dr. Telling them I was depressed, sleeping all the time, hair fell out, falling down, chest hurt, major migraines, nausea. Nurse called back telling me to cut my dose to 10 mg, I told her I was already on 10 mg, then she said cut it to 5 mg. at that time my TSH was 5.10 and Ft4_6 was 0.6 a month later I went to my dr visit feeling the same or even worse, explaining my symptoms. Dr. Said she made a mistake saying she meant to take me off the methimazole all together. I had labs done just yesterday and TSH level was 6.64 and FT4_6 level was 0.8. She has taken me off of the med all together but now she is afraid thyroid might not be functioning right so in 6 weeks I havr to repeat TSH, FREE T_4, and CMP,CBC to make sure there isn't another underlying autoimmune disorder I am suffering from. She said if my levels raise I will have to go back on the methimazole three times a week or if it isn't functioning then synthroid. I feel this isn't a no win situation for me and I'm gaining weight. HELP! I'm frustrated.
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[Ash76kel]

An endocrinologist is treating me.

[goolarra]

I think it's important for you to have TSI tested.  TSI, thyroid stimulating immunoglobulin, is the marker for Graves'.  Just because you are hyper does not necessarily mean you have Graves'.  There are other causes of hyper and a few types of "temporary" thyroiditis that start out hyper, then go hypo, then resolve.  It's important to know which you are dealing with.  

I totally agree with you.  There's also no excuse for not having a full thyroid panel.  

What kind of a doctor is treating you?

[Ash76kel]

I will ask why she never ran a TSI test. I think she was just assuming off the basis of my symptoms. They took labs a year before the ones noted above I don't have at my family physicians office. Dr lost the paper work then didn't find it until a year later calling me in explaining the overlook and I needed to be seen ASAP. Had a thyroid ultrasound done. The person doing the ultrasound called the radiologist in and he asked when I was to be seen I said in three mo. He said you need to get in now. The radiologist called endocrinologist and I was in within 3 days. I would sweat, pulse 200+, shaking, eyes hurt, skin is thickened, frequent bowel movements, tremors, irritability to the point of where no one wanted to be near me. The list goes on. But I felt SOMEONE should of done a complete thyroid panel. No one has yet to do that. It really bothers me. They want to diagnose me yet not run correct tests.

[goolarra]

So, if your TSI isn't being followed, what was the basis for your doctor's diagnosis of Graves'?  Was TSI ever tested?

Your FT4 is coming up, but slowly.  As you said, your doctor admitted that she should have discontinued methimazole in September.  You've been on methimazole for three months while hypo; it's going to take some time for your levels to stabilize off meds.

"But couldn't it become hyper while on synthroid."  Yes, you could become hyper while on Synthroid. If you have Graves', it can go into remission and might return later.  

I have more to say, but I'd like you to answer the question about TSI before I finish.  Thanks.  

[Ash76kel]

Wait a minute I just realized I becam hypo clear back in September. I remember dr telling she made a mistake and meant to take me off the med when I called in November :-( she said I'm in the limbo if it doesn't raise I'll be on synthroid, or it could raise and be normal, or it could become hyper again. But couldn't it become hyper while on synthroid.

[Ash76kel]

No dr. Has not been following TSI at all. I just went off meds today and have spent the last two days fully in bed. I cannot get up.
This is all I have:
June 13, 2014 TSH <0.1   LOW.    normal range is 0.35-4.94
                    FT4_6.   2.1 HIGH.     normal range is 0.7-1.5
Dr.  asked me what I wished for tx. I said methimazole
Began methimazole 30 mg
Then I broke out in a horrible rash so dr. Lowered med to 20 mg
Labs done on 9-5-2014 TSH.    5.50. HIGH
                                   FT4_6.     0.5 LOW
med were lowered to 10mg
I had labs done again on 11-03-2014 TSH 5.10 HIGH
                                                       FT4_6.  0.7 normal
I called dr. To let her know how sick I was, sleeping constantly, hair was falling out badly, throat hurt, weak, nausea, BAD migraines
They said they would see me at my appoint met which was two weeks away and to cut my dose to 5 mg and repeat labs closer to appointment date. So I did.
I had labs done on 12-02-14. TSH 6.64  HIGH
                                           FT4_6   0.8.   Normal

I thought they had done an FT3 but looking closer at my labs Dr. Had not
And dr has not been following TSI. Now DR wants to test for other disorders to make sure I have nothing else. So in jan dr ordered TSH, FT4_6 to make sure it will raise enough to be normal but not enough to be hyper a CMP, CBC


  

[goolarra]

What is the reference range on your FT4?  Is he testing FT3?

Your Graves' may be going into remission.  Has your doctor been following your TSI to see if your antibody level is dropping?

How long have you been off meds now?