# Frustrated with Methimazole- now hypothyroid???



## jezebel423

Hi All,

I was diagnosed with Graves in October and was on 30mg for two months. Labs throughout that period showed that my levels stabilize pretty quickly and that the meds put me in the mid-ranges. However, at the time I was experiencing some hypo symptoms so I let my doctor know and she dropped me down to 15mg a day. I was hoping that would help, but progressively things have gotten worse. I've started losing my eyelashes/eyebrows, I've gained about 7 pounds (despite best efforts) and I'm sleepy a lot of the time- I passed out on the sofa two nights ago at 8pm and slept right through the night- that is NOT normal for me.

I just got my most recent labs back and the numbers are below. I'm wondering why I went from normal ranges on 30mg to hypo on 15mg? Is it normal to go hypo on 15mg? Should I be asking to lower the dose again? I don't want to lose anymore of my eyelashes and I'd like to feel "normal" again.

T4,Free(Direct)	0.45 ng/dL Range- 0.82-1.77 
Triiodothyronine (T3)	115 ng/dL Range- 71-180 
TSH	56.920 uIU/mL Range- 0.450-4.500

I was just wondering if this had happened to anyone else, or if anyone had any advice on how to deal with the medication roller coaster?

Thanks!


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## HotGrandma

Happened to me.

I started with 30 mg/day in May went way hypo by October. Kept decreasing through labs by December my levels just crossed the line into their low normal range. Not my norm. What I noticed is that my labs are 2 to 4 weeks behind how I feel. Currently on 7.5mg/day. Been on that rollercoaster ride exactly a year.

How often are your labs being done? Best thing my Doc did was had me take 1200 mg/ day of Magnesium citrate. Helped with the gut issues and pain caused by being hypo.

According to my Doc Methimozole needs to be taken 3x per day. We did an experiment on missing a dose here and there so he could observe what my heart did. Doc thinks if I miss a dose I go hyper, because the drug has a short life and doesn't store in the body. Just a thought. How often do you take Methimozole during the day?

Are you having eye involvement? Lost my eyelashes from the swelling. Mostly they have grown back now. Still don't have to shave my legs which is the only good part of this crap I can find. Hang in there.


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## StormFinch

You didn't say how long exactly you've been on the maintenance dose, but from what I can gather I'm guessing approximately a month. If so, I would say another drop in dosage is in order, or even a break from it considering how hypo you are. You're currently at the highest possible maintenance dose.

There tends to be a lag between dosage and labs, so it's possible that your number drop was from the 30 mg dose. I, like Hotgrandma, would be interested to know how often you have blood work done. It should be ran ever 4 to 6 weeks on anti-thyroids, and because methimazole works so quickly I'd lean more toward 4 weeks until you know how you're going to react to it. Depending on the severity of your Graves, 30 mg may also have been too high of a starting dose.

The way things are *supposed* to go is that you are put on an anti-thyroid dose until your Free T4 drops into the higher end of the normal range. Then you're gradually scaled back to the minimum amount needed to retain your Free T4 in the upper 1/3 to 3/4 of that range. If you're doctor is dosing you on TSH, it's time to find a new doctor.


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## jezebel423

Since I started taking the meds (10/15) I've been getting tested every 4 weeks. I'm taking the 15mg split into two doses a day.

The doc wants me to stop taking for 2 weeks entirely and then get retested. That's fine, albeit a little scary to me- I don't want to swing back into hyper and I'm worried that all this up and down isn't helping with my hair loss. Keeping up with the costs of paying for the labs (my insurance won't cover the whole thing) is also a problem.

Jeez this is a frustrating disease to have. I feel defeated.


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## Andros

jezebel423 said:


> Hi All,
> 
> I was diagnosed with Graves in October and was on 30mg for two months. Labs throughout that period showed that my levels stabilize pretty quickly and that the meds put me in the mid-ranges. However, at the time I was experiencing some hypo symptoms so I let my doctor know and she dropped me down to 15mg a day. I was hoping that would help, but progressively things have gotten worse. I've started losing my eyelashes/eyebrows, I've gained about 7 pounds (despite best efforts) and I'm sleepy a lot of the time- I passed out on the sofa two nights ago at 8pm and slept right through the night- that is NOT normal for me.
> 
> I just got my most recent labs back and the numbers are below. I'm wondering why I went from normal ranges on 30mg to hypo on 15mg? Is it normal to go hypo on 15mg? Should I be asking to lower the dose again? I don't want to lose anymore of my eyelashes and I'd like to feel "normal" again.
> 
> T4,Free(Direct)	0.45 ng/dL Range- 0.82-1.77
> Triiodothyronine (T3)	115 ng/dL Range- 71-180
> TSH	56.920 uIU/mL Range- 0.450-4.500
> 
> I was just wondering if this had happened to anyone else, or if anyone had any advice on how to deal with the medication roller coaster?
> 
> Thanks!


It could very well be that for the time being, the TSI quieted down at the very same time you were feeling hypo, your doc cut your antithyroid med.

There are blocking and binding antibodies to the TSH receptor site.

Trab, TBII.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

Negative test results means that the autoantibodies are not present in the blood at the time of testing and may indicate that symptoms are due to a cause other than autoimmune. However, a certain percentage of people who have autoimmune thyroid disease do not have autoantibodies. If it is suspected that the autoantibodies may develop over time, as may happen with some autoimmune disorders, then repeat testing may be done at a later date.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

TBII (2)
http://www.ncbi.nlm.nih.gov/pubmed/6184007

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

It's hard to say one day to the next what your thyroid is going to do so I wonder; "Have you given thought to ablation?"


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## HotGrandma

Jezebel, in May I was on 15mg per day and my labs @ 4 weeks showed I was more hyper than when I started methimozole. Doc increased to 30mg per day and by October I swung so hypo and ached so bad I could hardly move. I suspect like you my body was stubborn and it took that long to comply. I was reduced to 7.5 per day in October and it took until mid December to cross that hypo line. I wanted not to take methimozole for a couple weeks but Doc refused. (Just my case). This is a slow process which is WRONG I hear ya. I swore I was going to Die when I was hyper so I had to put my complete trust in my Doc if I was going to get better. I swear watching my labs and compairing them against how I feel there is a lag time of 2 to 6 weeks. Hold on. I know its hard. I have to keep reminding myself things could be worse.


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## jezebel423

Actually my TSI has INCREASED since starting the meds (results below.) I wasn't considering ablation at this point since I've only been on the meds three months, but it's something that's on my mind now. Honestly, I'd prefer having my thyroid removed over Radioactive Iodine, but my doctor said removal was not an option for me. I felt that with the high levels of TSI that radioactive iodine wasn't something I felt comfortable with so hopefully those levels will drop.

For now, I'm going to hold on, good advice HotGrandma. It's hard, but a couple of more shots of trying to get the right med levels and then I'm going to consider a more drastic step.

(Right before starting meds) Thyroid Stim Immunoglobulin	288 %	0-139 
(Two months into meds, last month) Thyroid Stim Immunoglobulin	686 %	0-139


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## Lovlkn

Why is removal not an option for you?

In my opinion your care has been mis managed. You are extremely hypo.

When you are on anti thyroid med's you need to be tested frequently - especially when you are on such a high starting does.

I went from all out hyper to all out hypo in a matter of 3 months and thought I was losing my mind.

Be proactive in your care - go in for tests when you begin to feel hypo or hyper -

Your doctor is correct in stopping your medication for a few weeks - you are seriously hypo. If, you feel yourself getting hyper - go in for labs.

Maybe ask your doctor to begin you on a smaller dose - such as 15mg and then re-test in 3- 4 weeks.

I personally think it is too soon for you to be considering ablation of your thyroid - give it some time


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## Sandbar

Jezebel, being hypo especially extremely hypo like you are can cause the antibodies to increase. The TSH being so high is providing extra stimulation to the thyroid (with no results of course because you are hypo) but this can increase inflammation and antibody responses including TSI. Anyway please give it another chance you were/are just being overmedicated - doesn't mean the medication can't work for you.


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## Andros

jezebel423 said:


> Actually my TSI has INCREASED since starting the meds (results below.) I wasn't considering ablation at this point since I've only been on the meds three months, but it's something that's on my mind now. Honestly, I'd prefer having my thyroid removed over Radioactive Iodine, but my doctor said removal was not an option for me. I felt that with the high levels of TSI that radioactive iodine wasn't something I felt comfortable with so hopefully those levels will drop.
> 
> For now, I'm going to hold on, good advice HotGrandma. It's hard, but a couple of more shots of trying to get the right med levels and then I'm going to consider a more drastic step.
> 
> (Right before starting meds) Thyroid Stim Immunoglobulin	288 %	0-139
> (Two months into meds, last month) Thyroid Stim Immunoglobulin	686 %	0-139


Wow!!! Very high! I agree about the RAI and the antibodies. Surgical removal would be better. Do you think you should see an ENT for a second opinion?


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