[brondack]

#1059889

I was diagnosed in Nov 2012 with Graves with these numbers:

Blood work – THS = 0.02 and Total T3 = 227 (HYPER). Put on 30 mg / day of Methimazole for 6 weeks.
Blood work then – TSH = 0.51 and Total T3 = 68 (Borderline HYPO). Methimazole reduced to 20 mg/day for 6 weeks.
Blood work then: TSH = 57.7 and Total T3 = 65 (VERY HYPO).
Methimazole reduced to none for 4 weeks.
Blood work last week: TSH = 0.14 and Total T3 = 268 (VERY HYPER).
Have not heard from endo yet on dosage change.

Fortunately, I have not endured any of the typical side effects of either extreme (lethargy, etc on the hypo side or anxiety, etc on the hyper side).

My only real frustration is that I need this to stabilize so I can have a hernia surgically repaired.

[vanillasky]

#1178557

Your bloodwork looks almost as bad as mine. You have one whacky thyroid. The only thing to do is to get rid of it.

I’ve been on this rollercoaster ofups and downs for YEARS! am in remission now but the next time I go hyper, it’s gonna go get blown up or removed.

Good luck
Karen

[jenm05]

#1178558

I’m only 1.5 mos into this whole thing so forgive me, but why do doctors have patients just stop taking the meds vs. a slow wean to see how the patient responds?

[linzyyyy]

#1178559

Haha vanillasky!!! “next time I go hyper, it’s gonna go get blown up or removed.” Made me laugh

[Kimberly]

#1178560

@brondack – Wow, how frustrating to be on this rollercoaster, especially since you have another procedure that needs to be completed!

One question for your doc might be whether his/her dosing decisions have been based on Free T4 and T3 and *not* just on TSH, which can be an unreliable benchmark early in the treatment process.

It seems like it’s been both blessing and curse that you haven’t been really symptomatic. On the one hand, it’s good that you aren’t dealing with the horrible symptoms, but on the other hand, those symptoms can be a clue that levels are heading in an extreme direction – and a red flag to get further testing done.

I would definitely call the doctor’s office for further direction and dosing instructions. Occasionally, follow ups fall through the cracks, and you definitely want to get this addressed soon!

@jenm05 – Certainly the preference is to make more gradual adjustments. If antibody levels are still raging when anti-thyroid drugs are withdrawn, a recurrence is likely. However, if a patient goes extremely hypo on the meds, you definitely need to deal with that situation ASAP.

[vanillasky]

#1178561

It is so frustrating when you have other surgery that is so important and it cannot be performed because of hyperthyroidism.

Years ago, I had planned a cosmetic procedure and it was cancelled because I was hyper. I had to wait months until they got a normal range.

And then a few years later? the same thing happened. I was so disappointed because I wanted cheek implants and the doctors will not touch someone hyperthyroid for that type of operation. Finally I got a TSH of .0.15 and they said that they could operate with the right meds.

I hope you get this resolved soon so you can fix up that hernia!

Karen

[Author]

Posts