# New labs



## Scanders (Sep 9, 2015)

I've been taking methimazole for about 2 years now for graves disease. I was rolling along feeling all right for several months (March- August. Maybe not my very best, but pretty functional) when I had a mild increase in my FT3. Endo was OK with rechecking labs in 2 weeks before wanting an increase in meds, but recheck showed increase in FT3. Increased MMI and in 4 weeks had no change. Increased again, and have these labs. My question is--is it likely that these levels will keep going down if I continue with this same dose? Or should I consider decreasing to stop the levels from getting lower? Or will the levels most likely stabilize if I leave them alone? I am having some hypo symptoms, and I'm really hoping they're just transient in response to my levels moving. I had labs today and expect to hear from the endo on Monday, and I also expect she will want me to stay on the current dose. I am just wanting to avoid going much lower.

Labs: All labs have same ranges

10/17/15 TSH <0.03 (.2-4.5) FT4 1.3 (.8-1.8) FT3 4.0 (2.3-4.2) MMI 3.75mg daily

9/17/15 TSH <0.03 FT4 1.4 FT3 4.5 These were virtually the same as August MMI 2.5mg daily

5/28/15 TSH <0.03 FT4 1.2 FT3 3.7 These were about the same in March and April MMI 2.5mg 6 days/week

I seem to be very sensitive to even small changes with the hormone levels, so have a pretty narrow window where I feel optimal. I've also had severe TED, with OD and muscle surgery done so far, but my eyes seem to be fairly stable right now. I'm waiting for eyelid surgery (one eye doesn't close very well) but the eye surgeon said even my levels being off this little bit can impact my eyelid muscles, which is why he's waiting.

You'd think I'd have this figured out by now, wouldn't you?  (And yes, I might consider TT at some point...)

Thanks for your thoughts!


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## Andros (Aug 26, 2009)

Why have you not had TT? My Ophthalmologist would not do any decompression surgery and other surgeries until I was stable in the aftermath of having my thyroid removed. I agreed and certainly am glad I did. It made a whole lot of sense to me.

Is there a special reason you are resisting ablation?

Sending hugs,


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## Scanders (Sep 9, 2015)

I think I become stable for several months, and it's easy for me to think I might reach remission. In other countries, long term use of methimazole is a standard practice, and it seems to be more accepted in the US recently, as well. My levels don't get very far out of range--in fact I really didn't notice these last hyper symptoms until the labs were done, but then, I've got that menopause thing muddying the waters as far as symptoms. I notice symptoms more when on the low end of the range, even when technically normal. So until I wrestle it out in my head, as far as TT, (and I'm getting closer--it's been mentioned at my last two appointments by endo as something to consider) I still want to try to stabilize again in the meantime, and not get too low.

The eye surgeons felt the eye disease was stable for long enough, and thyroid levels were "stable" enough to proceed. But not for eyelid retraction surgery, apparently.

Anyway, would you think any symptoms I have now might be transient, or will the levels most likely keep falling in response to the increase in methimazole? I've only notice any symptoms in the past week.

Thanks!


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## Lovlkn (Dec 20, 2009)

> You'd think I'd have this figured out by now, wouldn't you?  (And yes, I might consider TT at some point...)


LOL- you have a sick thyroid in your body - there is no figuring "it out" because "it" will do whatever it wants.

I struggled for 4.5 years . That's when I gave in and saw a surgeon and had my surgery a few months later. Life is so much better post TT.

My endo tried to keep me hypo. My TPO antibodies went sky high over the time I was on Tapazole and I was trucking along with minor adjustments and then one day my FT-3 went high - outta the blue just had a huge increase.



> Anyway, would you think any symptoms I have now might be transient, or will the levels most likely keep falling in response to the increase in methimazole?


There is no way to know what your levels will do - you would think they would continue to go down with the increase but if a nodule is acting up or your antibodies are changing it's just too hard to call.

When is the last time you had TSI and TPO antibodies testing? Last ultrasound of your thyroid?


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## Scanders (Sep 9, 2015)

Trab was last checked in December. 3.09 (<1.75) I'd had not flares at that point and was surprised it was virtually the same as it had been initially. (The "flare" came a month later following an illness.) At diagnosis it was 3.01 (?), and somewhere in there when she thought I was maybe going into remission, it actually rose to 6-something, and the exacerbation of TED followed. She said she'd only check it if it appeared I was nearing remission, otherwise it really doesn't provide much value, as it primarily tells if antibodies are active, and at this point, it would appear they are just based on my labs. I've never had an ultrasound of my thyroid, although I'm told there is a small goiter, per palpation.


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## Andros (Aug 26, 2009)

Well....................you will just continue on the roller coaster here and I feel bad that you have made that choice.

How are your liver enzymes? Hopefully your doctor does a test about every 3 months. Long term use of anti-thyroid is very damaging to the liver.

In any case, I and others here will definitely support your decision and will offer on-going support. Graves' is pure hell. And that is an understatement.

Hugs,


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## Scanders (Sep 9, 2015)

Liver enzymes are fine. Endo said if no remission in the next 6 months or so I really should consider definitive treatment, and the fact that I'm considering TT at some point is movement in the right direction. (I'm just not there quite yet. Sorry.) Thanks for your support, no matter what direction I go.


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## Scanders (Sep 9, 2015)

So, I noticed more brain fog and fatigue, and while not frozen, my thermostat seemed extra sensitive to my surrounding environment, and I seemed to be losing more hair. So I asked for labs, and this is where I'm at.

TSH-<0.03 (.2-4.5) same for past year

FT4 1.0 (.8-1.8) down from 1.2

FT3 3.2 (2.3-4.4) down from 3.6

So a little bit down from past labs. MD initially wanted to stay at same dose of MMI, which is 3.75mg. I pointed out I've had similar symptoms with similar labs in the past, and each time I felt better after MMI adjusted. (Back to "labs are in normal range, so it's difficult to confidently say that symptoms are related to thyroid".) Today she reluctantly agreed to reduce to 2.5mg. However, in the past week, at the 3.75mg dose, I can't say that I've noticed those same symptoms I felt in the 2 weeks before. So now, I wonder if I should decrease the dose, or stay put, as the endo first suggested? If stress is the issue, I've had some crazy work stuff, my mother in law just died, and this in turn has exacerbated my husband's health issues. And I notice hypo symptoms pretty readily, but I don't really notice hyper symptoms until they're revealed in labs. I'm not sure what to do at this point. Reduce dose or not? (Of course, my indecision might be further evidence of brain fog?) I think, looking at the labs, I probably should go ahead and decrease the dose? Thoughts?


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## kathlav (Mar 26, 2013)

Hi Scanners,

That's quite a big drop in my opinion, and if you are hypersensitive to your dosage, and not sure in the first place weather to drop at all. If it were me I would half that dosage drop to begin with if you decide to drop, I don't know how easy it is to accurately half the dosage (ie what mg each pill is).I always find taking dosage down/and up in smaller increments to be better.(again especially if you are very sensitive to the methimazole dosage.

I am from one of those countries where they are quite happy, if you stabilize on a low dose to stay with it long term. TT and ablation are not the GO TO remedies. I was told I could indefinitely chose to be medication based on those terms, as long as regular full bloods are carried out.

In the end you have to feel YOU have tried all the alternatives and done what you feel is right, I have had Graves since 2011, and its taken me this long to, give in to having either Surgery or ablation, but I am at peace with my decision now. Had I done it when I mentally wasn't ready, i feel it would have been a mistake. You will know.

Having said that, with such bad eye involvement as you have, I may have come to the decision sooner.

wishing you well

Kathy


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## Scanders (Sep 9, 2015)

Thanks Kathy. It helps to have another opinion when undecided. I became undecided because I felt a little better this week, but these silly antibodies are so unpredictable! One time my endo says TSH is pituitary so we won't worry about that, and next time she wants higher dosing to try to bring it up. My dosing now isn't even quite 3.75mg--5mg M-W-F and 2.5 the other 4 days, so I'd think dropping to 2.5mg daily wouldn't be too big of a drop.

The worst of the eye disease has been corrected surgically.(It came on fast and furious, almost too fast to get on another treatment path.) I'm just left now with some retraction and excess tissue on one eye. That can also be corrected, but I'm told to be patient. He hopes there may be further improvement if my thyroid levels stay stable. He said even my last minor hyper-blip (and only FT3 was elevated) could impact the retraction. So I wait.

All in all at this point I'm trying to take this one step at a time.

Thanks again!

Christy


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## Lovlkn (Dec 20, 2009)

> TSH-<0.03 (.2-4.5) same for past year
> 
> FT4 1.0 (.8-1.8) down from 1.2
> 
> ...


You sound to be experiencing what I did - a doctor who wants to keep you hypo. Your Free's are completely hypo. I cannot imagine that is any good for your eyes, nor is being hyper. My understanding is that anti thyroid drugs - if properly administered ( meaning your lab results are in good range 1/2 - 3/4) that your eyes may actually settle down.

I took ATD's for 4.5 years - my liver is fine and I consumed alcohol while I was taking them - you just need to have liver enzymes every so often to make sure you are not experiencing any issues.

Start researching your surgeon options and find one you are comfortable with. I struggled for many years before I came to the decision to have my thyroid removed - I completely understand.


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## kathlav (Mar 26, 2013)

Hi Scanders,

I really feel for you, my eye involvement is minor and has n't affected my eye sight. I have very large eye bags and my right eyelid becomes quite heavy sometimes, with only slight proptosis.
when my levels are good my eye symptoms pretty much disappear apart from the eye bags!
Untill your eyes have settled it's unwise to have TT anyway, being patient is hard but necessary.

Taking one step at a time is best.....

Kathy.


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## Scanders (Sep 9, 2015)

I think hypo makes endos feel safe, that there aren't as many dangerous health issues as there can be with hyper. (I read some recent articles about high-normal labs--that's scary, too. Dementia and sudden cardiac events, oh,my.) I certainly have been considering if TT and treating with replacement hormone might not leave me feeling more stable if I'm so sensitive to small changes in hormone levels. But I'm also terrified they'll want me to be hypo. And, while I can feel the fluctuations, they still don't seem "wild" enough for surgery, especially since the worst of the eye condition has been treated. (And I didn't like surgery--although I liked the results of the eye surgeries. Little children don't run away from me crying anymore...) But the tricky part, again, is getting the endo to keep my levels high enough so I feel well.

If I stop and pay attention, my eyes have had a few issues lately. Not surprising, I guess.


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## Scanders (Sep 9, 2015)

I'm confused. New labs today. TSH <0.02 (0.2-4.5) FT4 0.8 (0.7-1.5) FT3 3.1 (1.7-3.7). New ranges for FT4 and FT3 than past labs.

FT4 has dropped, but FT3 is stable, or even a little up from last time with new ranges? (I might be a little muzzy with my math skills at the moment,) Why wouldn't FT3 have dropped along with FT4? I've been taking MMI 2.5mg daily. I feel different, but couldn't say it's much worse. Definitely not better. Fatigue, weight gain, thoughts are still a little slow...

My eyes are not comfortable. Eye doc decided I needed to try restasis drops. (Talk about $yikes$! if you have a high deductible plan.) I thought the drops burned all day long, but now I wonder if it's just my eyes in general. I'm having the least amount of hot flashes I've had in over 2 years. But I really feel as if something is wrong overall with my hormonal picture. PMS symptoms with no period as I'm postmenopausal (sorry if that's TMI.) I haven't heard from my endo yet, but I expect she will not want to decrease the MMI. Last month she was talking again about trying to increase my TSH by keeping the MMI where it was, but did eventually agree to a dose decrease, although reluctantly. She also said she was more concerned with FT3 being around mid-range, so if that's where it is, she'll not want to decrease. To be fair, maybe she'll surprise me? If she doesn't and I go rogue, does halving the dose to 2.5mg every other day seem as if it's enough of a decrease or too much? I'm not especially familiar with dosing lower than 2.5mg--the lowest I've gotten is 2.5mg 6 days per week. Thanks for your thoughts!


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