Trying to get to maintenance dose of methimazole

[smalltown9945]

I was diagnosed with Graves around 7/25 of this year and since have been taking a high dose of methimazole. Most recently I was taking 30 mg a day, but now my FT4 has sunk so low over 8 weeks of high doses that my Dr. wants me to move down to a maintenance dose of 10 mg a day.

Makes sense to me, the problem is that within a day or two of going from 30 mg to 10 mg, my blood pressure and heart rate shoots up *quite* high and I feel like I'm on the ceiling. Isn't it supposed to take much longer to feel the results of a changed methi dose? Anyone know why I'm reacting like this?

[korucowboy]

Sorry to hear about your young daughter's situation. I went through a thyroid storm last November while I was working overseas, and had to be airlifted back to the US after stabilizing in 2 weeks. My endocrinologist started me on a daily dose 20mg of methimazole in Dec 2010, and in January moved it to 30mg daily dose as my T3 & T4 levels continued ot be high. In March 2011 she increased my dose to 55mg a day. I feel great, but the levels continue to be high. I'm scheduled for blood work in the middle of April 2011, right before I have my appointment with the endo a week later. I'll keep you posted on my TSH levels as a result of this excessive dose of methimazole. One thing you really need to know is, make sure you do exactly what the doctors say. The reason I say this, is I could have died last November when I went into a thryroid storm. My family and friends, feared the worst for me, but I'm a strong believer and I'm convinced the good Lord spared my life. I take my medicine religiously, and the endo says once my levels are within an acceptable limit, I will go for the thyroidectomy. I'm a 42 years old married with 3 young kids. I pray that I'm around to see them all finish college and get families of their own. I hope, and know your daughter will overcome her condition. Just keep with the meds as the doctor says, and cut out all exercise that might increase her metabolism and go against what the medicine is supposed to do.
Good luck!
Korucowboy.

[lellie24]

Just recently in August my 10 yr old daughter was diagnosed with Graves Disease and she was put on methimazole 10mg and her dose is up to 50mg a day now because her endo states the bloodwork isn't coming down and told me this is a high dose for someone who only weighs around 80lbs. This is the second dose increase since she started the med and it has me concerned as far as what to expect or if she could have problems that come up. So far nothing has happened, but it's only been increased about a week. They are scheduling her for a biopsy to check a nodule that is 1.2cm due to the fact she has swollen lymph nodes in her neck area and hasn't been sick otherwise. Also, the endo told me if we have to do the iodine treatment, there's a possiblity it may not work due to the size of her thyroid which is large. If that is true than she states the thyroidectomy would need to be done. This is all new to me and I am trying to learn as much as possible to help my child.  Hope your journey goes well, take care of yourself.
Leslie

[Smilerdeb]

I always used to wake up around 3am in the morning with a fast heartrate and could never figure out why until one day my Doctor explained why.
He told me that between 2-4 am every morning the thyroid 'dumps' thyroid hormones when hyper so this in turn caused the fast 'rush' I would get every morning.
So after that I started taking my 2nd dose at bedtime with a beta blocker too.
I then found I was sleeping through to 5.30am everyday (normal time I wake) and wasnt waking with a fast heartrate either.
It does pay to split the dose up and take the 2nd dose after dinnertime or just before going to bed.
Also a well known fact that beta blockers help with the high T3 toxic symptoms.
I agree that the dose decrease is 'too much too fast ' and would suggest 5mg decrease everytime but done in 2 weekly time slots as suggested.
Just be careful as you really can go from hypo to hyper within days.

It is the T3 that causes thyroid storm usually and I wouldnt wish that on my worst enemy.
Take it easy and take it slow.
Also remember that once Graves...always Graves unfortunately.
As for the TSH...it is also a well known fact that those who have Graves AND still have a thyroid will ALWAYS have a low TSH so dont expect that to come up much at all.
It is no big deal if it doesnt come up...the FT3 and FT4 is more important to maintain at normal levels comfortable to you.
Remission can take a long while for some...while others never achieve it.
I hope you do and wish you all the best with it as I know how debilitating and tedious it can all be.


Debs
(Graves, Hyperthryoidism, RAI & TT 2008)

[smalltown9945]

PS, thank you also  Deb for the splitting doses advice. It makes sense that that would help and I will give that a try!

[smalltown9945]

Believe it or not, my doc had me take 60 mg per day when I started! I had a horrible allergic reaction and I know now that that was just WAY TOO much.

Thank you both for your responses. Deb, my labs are not swinging around (so far anyway), it's just that I've been on a high dose for so long that my FT4 got too low after 2 months of steadily falling, so I really need to cut down the meds. But I tried to go from 30 to 10 in a matter of days, and obviously that is a really bad idea. I'll try to do it much more slowly like you describe, cbread. Thanks so much for your experience, it helps me know I am not a physical weirdo for having trouble with this.

[cbread]

I am on maintainence methimazole now, but its very hard to wean and I would recommend doing it slowly.  And whenever you do- its a monthlong adjustment. I am down to 25mg per week after three years.   Even on that small dose, any change or missed does wreaks havoc with my system.  I always weaned slowly- so if you are 30mg per day then go to 20 mg per day for two weeks, then down to 10 mg per day, etc. I will say that 30mg per day is a lot!    Good luck and be patient, your body will take time to get use to the new dosage.

[Smilerdeb]

Usually the carbimazole is best taken in 'split doses'.
Try splitting the dose up into 2...morning and night.
This stops the thyroid from firing up as the carbimazole wears off.
It is the antibodies causing the thyroid to 'fire up' and usually takes up to a year to stabilise if that is possible.

Unfortunately for myself...it wasnt possible and I had RAI then TT last year.

Just make sure you are on a beta blocker as this tends to bring down the T3 a bit and helps with the hyper feelings.
I used to get my labs done fortnightly as I used to go from hyper to hypo in 2 weeks flat.
Just start to log all yr symptoms and recognise them.
By logging each day in a notebook, you will start to see a pattern emerge and can hopefully catch the hyper/hypo symptoms before the labs do.

I used to take my pulse first thing in the morning and found that if I had 2 consecutive days where it was fast, then the dose needed to be increased and if too low, then decreased.
But please work with yr Doc on this one..dont self diagnose your meds as you are at risk of thyroid storm (atrial fibrillation) if your ft3 and ft4 go too high.
Good Luck :)