# I feel better higher than normal



## mysh3ll3 (Aug 1, 2013)

I’ve been diagnosed with Graves for 14 months now taking 10 – 20mg of Methimazole depending on my levels. I am now taking 20mg daily for the past 3 weeks because my T4 was 8.8 (normal 4.4). I am on a roller coaster flipping hyper to hypo and back again. I am going to see if my eyes can handle RAI today mainly because my doctor says it’s time to talk about ‘options’ since we haven’t been able to stabilize over the past year. I am not sure what to do. I feel better high. I can think, I can work out, I can see without issues. I can lead a fulfilling life as a mother, wife and manager. I know my doc says I can die early from this disease, but honestly, being hypo, I feel dead. What is wrong with being a little on the high side if I feel better? Why not base my levels on how I feel as opposed to a number?


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## Andros (Aug 26, 2009)

mysh3ll3 said:


> I've been diagnosed with Graves for 14 months now taking 10 - 20mg of Methimazole depending on my levels. I am now taking 20mg daily for the past 3 weeks because my T4 was 8.8 (normal 4.4). I am on a roller coaster flipping hyper to hypo and back again. I am going to see if my eyes can handle RAI today mainly because my doctor says it's time to talk about 'options' since we haven't been able to stabilize over the past year. I am not sure what to do. I feel better high. I can think, I can work out, I can see without issues. I can lead a fulfilling life as a mother, wife and manager. I know my doc says I can die early from this disease, but honestly, being hypo, I feel dead. What is wrong with being a little on the high side if I feel better? Why not base my levels on how I feel as opposed to a number?












There is no reason to remain hypo. Your doctor will put you on thyroxine replacement.

Your doctor no doubt has pointed out to you that anti-thyroid drugs are hard on the liver and that a perpetual state of hyper can and does cause permanent damage to the eyes, heart and all other bodily organs.

However, it is your body and your choice. We will be here for you no matter what choice you make.

You will meet many here who have Graves' myself included. I almost died from a thyroid storm. Others will comment as well.

Glad you are here; it's a good place!


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## jsgarden1 (Aug 29, 2009)

Hi mysh  I was hyper/Graves for about 4 years. I had a TT in April this year. I have felt sluggish since it. I'm on 137 Levothyroxine. I have bloodwork coming up Saturday and an Endo appt. on Aug. 13th. I'm holding out hope that my TSH has gone down some, but I don't think it has. It was 3.72 on the last bloodwork. I felt so much more energized with an under 1 TSH. I don't want the heart palpitations back, just my energy. My Free T-4 was at 0.95 (0.58-1.64), so if this new bloodwork still shows that low, I'm going to ask for something...Cytomel I believe? I also want to see if my Vit. D as improved, it was 15 (30-100) on the last bloodwork. I have TED too....aren't we with Graves just so special? I had the TT rather than the RAI because of my eyes. I know how you feel and where you are coming from. I hope you find some relief soon.


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## webster2 (May 19, 2011)

I really think you have to look at the serious implications that being hyper can cause. Bones, heart and eyes are just a few of the things that can be damaged. I also feel there is a good point where you can feel well and be conscientious of long term health.

My endo feels I had Graves for 20 years undiagnosed. I have osteoporosis. It took awhile after the last thyroid surgery but I feel great. Feeling great now, without a thyroid, is a bit of a balancing act but feeling great is worth it.

Andros mentioned a thyroid storm. I had one and would not wish it on anyone. I wish you all the best.


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## StormFinch (Nov 16, 2012)

You don't have to be hypo, you just have to find the right doctor.

I too had undiagnosed Graves for a very long time. Thanks to years of the wrong thyroid tests I developed osteoporosis which was diagnosed at the age of 42. I'm 46 now and nowhere near menopause yet, which makes me afraid of what the future might hold for my bones.

Since having my thyroidectomy in December, I found a decent doctor who prescribes my replacements based on my Free T4 and Free T3, and finally feel normal for the first time in years.

If you're flipping between hyper and hypo on Methimazole then either your doctor doesn't know how to dose properly or you have something else going on besides just Graves. If doctor is recommending RAI while you have eye involvement then he is doing you a disservice. RAI will actually make your eyes worse, although evidence suggests that a round of prednisone before and after the procedure may prevent that.

There are ways to balance everything out, you just have to learn everything you can and become your own advocate. Sometimes I wish some of these doctors could walk in our shoes for a month or two.


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## mysh3ll3 (Aug 1, 2013)

Thank you all for your thoughts. I'm afraid they will not be able to find the right dose after RAI. I hear so many people that still have a problem afterwards.

At 43, my blood pressure is good, my heart rate at 63 and my eyes are 20/20+. However, I am 30lbs heavier, sluggish, brain fog, and sleep 9+ hrs per day. I feel horrible but I am pretty health despite my thyroid.

Still not sure what to do. I think i just need the right dose which may mean blood work more often. Maybe I should talk to another endo.


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## Prudence (Oct 30, 2012)

mysh3ll3 said:


> Thank you all for your thoughts. I'm afraid they will not be able to find the right dose after RAI. I hear so many people that still have a problem afterwards.
> 
> At 43, my blood pressure is good, my heart rate at 63 and my eyes are 20/20+. However, I am 30lbs heavier, sluggish, brain fog, and sleep 9+ hrs per day. I feel horrible but I am pretty health despite my thyroid.
> 
> Still not sure what to do. I think i just need the right dose which may mean blood work more often. Maybe I should talk to another endo.


That's the tricky part, indeed: finding what level is best for you. Even if you feel better hyper, it might be because your body has become accustomed to that state of being-and though hypo is no fun either, hyper can have bad effects down the line like everyone else stated. I would find a second opinion, or even ask if it's okay to experiment with your medication-try a pill and a half, try alternating the doses, etc.


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## HotGrandma (Sep 21, 2012)

mysh3ll3 said:


> I've been diagnosed with Graves for 14 months now taking 10 - 20mg of Methimazole depending on my levels. I am now taking 20mg daily for the past 3 weeks because my T4 was 8.8 (normal 4.4). I am on a roller coaster flipping hyper to hypo and back again. I am going to see if my eyes can handle RAI today mainly because my doctor says it's time to talk about 'options' since we haven't been able to stabilize over the past year. I am not sure what to do. I feel better high. I can think, I can work out, I can see without issues. I can lead a fulfilling life as a mother, wife and manager. I know my doc says I can die early from this disease, but honestly, being hypo, I feel dead. What is wrong with being a little on the high side if I feel better? Why not base my levels on how I feel as opposed to a number?


Mysh, I am curious. Are you taking the Methimazole once, twice or three times per day. Methimazole has a short life or 1/2 life meaning its only in your system for about 5 hours. To be effective it really needs to be taken three times per day.


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## mysh3ll3 (Aug 1, 2013)

I was taking 1 10mg in the morning and then half pill at night. When the doc increased it to 20mg a day she told me to take 2 pills at night. The reason was because when I took the 1 pill in the morning, I couldn't function at work for about 4 hours (brain fog). Then I realized 2 pills at night wasn't right for me either. So this week, I've been taking 1/2 pill around lunch and 1 1/2 at night (after reading your comments on how long it lasts...thank you!). That is working better for me.

Last night I slept 10 1/2 hours, and I am struggling now to stay awake. I believe I am now hypo and overmedicated.


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## HotGrandma (Sep 21, 2012)

I agree with Stormfinch. Your "doctor does not know how to dose properly". 20mg per day is a pretty hefty dose. Graves is caused by antibodies. There is no medication or treatment for the antibodies. You have to get your levels in "your range" (where you feel good). When the thyroid is producing too much or too little hormone the antibodies thrive and attack the thyroid and other parts of your body like the eyes. Them tricky little buggers are just waiting for a reason to attack.

Since ATD's have this short life if not taken 3X per day your levels are on a roller coaster going up and down all day long. Making the antibodies happy. Sometimes it taked months (taken 3X per day) for the ADT's to bring the levels into range and even longer for the TSH to match the Free's. As where replacement drugs can be taken once a day and for some once a week. I believe doctors confuse the two.

Hyper is an Extremely dangerously way to be. I agree Extreme Hypo is worse. I have lived in both worlds and prefer hyper too. But when my eyes were under viscious attact and I lost quality of life the hyper had to go.

Ultimately ATD's are given to stabalize the thyroid bringing the levels into range so TT or RAI isn't life threatening. The third option is a possible remission on ATD's. Studies have shown ATD's taken for 18 months to 4 years before withdrawl with normal labs with reduced TRab or TSI can successfully achieve remission.

I strongly suggest you put an end to your roller coaster ride before it causes serious damage to your eyes or other parts of your body. I recommend asking your doctor if you can take the ATD's first thing in the morning then a second dose 6-8 hours later and the 3 dose 6-8 hours after the second. Once I started dosing this way there was a fast improvement. I could feel the hyper coming on if I missed a dose.


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## Lovlkn (Dec 20, 2009)

mysh,

If you doctor is directing you to a "permanent" decision would you consider a thyroidectomy over RAI.

With surgery it's over - you begin replacement and focus on dialing into "your dose".

With RAI it's a process - you will have fluctuating thyroid levels and will likely require a 2nd dose and possibly a 3rd if your thyroid does not die completely.

Hotmama - good catch on dosing the Methimazole.


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