Hi Elaine, thank you so much for all your work in this field. I've been trying to educate myself piece by piece since my Grave's disease diagnosis last December 2016 and your site and books have been hugely helpful. I have a question about Methamizole dosing and methodology for weaning off the meds.

My TSH has been under .01 this whole time and my endocrinologist has been using mostly Free T4 and sometimes additionally Total T3 to monitor my response to my Methamizole dosage.

I started Methamizole in February 2017

2/2/17 - These were my numbers before starting meds:
T4 - 3.1 (0.8-1.8)
TT3 - 313 (76-181)

2/20/17 - After 3 weeks (2 weeks at 20mg, 1 week at 10mg) those numbers stabilized
T4 - 1.5 (0.8-1.8)
TT3 - 159 (76-181)

3/24/17 - After a month remaining on 10mg/day) they were still stable
T4 - 1.5 (0.8-1.8)

4/18/17 - I decreased to 5mg/day starting on 4/1 and my levels elevated again
T4 - 2.1 (0.8-1.8)
TT3 - 218 (76-181)

6/5/17 - I increased to 10mg/day starting on 4/18 and my T4 dropped
T4 - 0.7 (0.8 - 1.8)

7/13/17 - I decreased this time more incrementally starting on 6/5 to 7.5mg/day and my T4 went up slightly
T4 - 1.0 (0.8-1.8)

8/9/17 - I decreased starting on 7/13 down to 5mg/day and my T4 elevated again
T4 - 2.1 (0.8-1.8)

Since 8/9, last week, I increased back up to 7.5mg in hopes to stabilize my levels. I feel dizzy, short of breath, and heart palpitations even with the slight elevation of T4 above the range.

My endocrinologist is eager to have me on lower doses if possible because I am having systemic joint pain, our guess is as a side effect to the Methamizole, and my liver enzyme Alkaline Phosphatase has been elevated since starting Methamizole (though my other liver enzymes were initially elevated and have since normalized):

Alkaline Phosphatase
2/20 - 126 (33-115)
3/24 - 159 (33-115)
6/5 - 166 (33-115)

Any thoughts or suggestions from you as far as a strategy to manage and eventually (hopefully) wean down and possibly off of Methamizole is greatly appreciated. My body seems thus far to be quite sensitive to adjustments.

I have three other specific questions -
1. Is getting pregnant on this low of a dose a risk?
2. I have been taking meds first thing in the morning. Is it helpful to distribute them differently (ie. half in the AM/half in the PM?) or is it all the same?
3. At what point should we worry about the elevated Alkaline Phosphatase?

Thank you so much for your time Elaine!

Best wishes,

Tracy

Hi Tracy,

I'd consider alternating the dose, like taking 7.5 mg for two days and then 5 mg for a day, then back to 2 days on the 7.5 mg dose. Your endo is right in monitoring your dose based on the FT4 level.

You wrote: I have three other specific questions -
1. Is getting pregnant on this low of a dose a risk?
No, doses of 20 mg MMI or less are ok to use in pregnancy but you want your levels to be stable on a specific dose or dosing protocol before you become pregnant. Usually, patients are switched to PTU for the first trimester and then switched back to MMI for the second and third trimesters. a 10 mg dose of MMI is equivalent to 100 mg PTU
2. I have been taking meds first thing in the morning. Is it helpful to distribute them differently (ie. half in the AM/half in the PM?) or is it all the same?
best to take 1/2 dose in the AM and the other half about 12 hours later for the most stable blood levels
3. At what point should we worry about the elevated Alkaline Phosphatase?
the general rule is that you don't want your level to rise more than 3-5 times the high end of the range so your level is mildly elevated. Remember that it can be elevated from other drugs, including acetaminophen, alcohol, estrogens, etc. Your level should continue to fall as your dose is eventually lowered. best, elaine