After RAI

[Max914]

It's now been over two weeks since I had RAI treatment for Graves.  I was diagnosed with Graves in February and went on Methimazole and Toprol for the heart.  I had a mild to moderate problem with TED and the drugs helped to relieve the pressure over a month or two.  Since I had RAI, my eyes have worsened to about the same as they were prior to diagnosis.

My question is:   Does going on methimazole and toprol help ease symptoms after RAI?  I've looked and looked and seen nothing about this.  Also, Does taking ATD's reduce the effectiveness of the RAI?  I think I remember the endo saying to go back on them afterwards.

Thanks,
Max

[24yearslater]

Yes 24 years after RAI They tell me this,is rare I also Have thyroid eye disease.2%

[Max914]

Update: In May of last year I had an RAI done to cure a horrible hyperthyroid.  Then about a month afterward I began taking levothyroxine at 75 mg which Deb agreed was too high.  So I began cutting these in half, yet still had hyper symptoms which showed up in labwork.  In December my TSH was low (0.05) where normal is 0.4 - 4 and the FT4 level was at normal (1.8).  This condition is called "subclinical hyperthyroidism" So now I'm completely off thyroid supplements for going on a month now.  I feel alright but still feel anxiety at times.  Next month I'll get them checked again.  Anybody have experience with "subclinical hyperthyroidism"?  Will they want to do another RAI?

[Max914]

You're absolutely right!  I had my thyroid hormones checked in August and they showed hyper.  A week or two before going to the endo, I started cutting the 75 mcg tablets in two and took a half everyday.  The endo was really supportive and said that was smart.  My labs in late September showed improvement.  T4 was in range and TSH  was slowly rising although not yet in range.  The endo said that was because TSH is secreted in the brain and takes a little longer.  About a month ago, I started drinking strong coffee and noticed palpitations.  After a few weeks of enjoyable coffee drinking, I stopped altogether.  I've also even cut back on levothyroxine.  I forget most nights (I began taking it at night before bed) but still my heart is beating fast.  I'm kind of waiting for signs of hypo but the minimal dosage is working.  I have some stress from school and figure this is part of it.  I'm still happy with the RAI done in May.  I'm currently not insured and hate the whole system but that's another story.  Thanks Deb.  What do you think the rapid heartbeat is caused by?  No coffee in several days.

[Smilerdeb]

Until you have been on a T4 med for some time, an Endo wont even suggest Armour.
You really have to stabilise the levels a bit before trying Armour.
If you cant stabilise them, then ask for a T3 med with the T4 med.
Take baby steps......
You will notice the difference if you do.
I know its tedious and frustrating but baby steps are the secret to success.
Too much, too fast = Hyper.

You may need to decrease down to 62.5mcg but dont do this without your Docs approval and labs done first.
It took me a lomng while to get to 62.5mcg and it agree with me.
I started off increasing the 62.5mcg every 2nd day (3 times a week and 50mcg 4 times a week) and then slowly each fortnight, increase the 62.5mcg an extra day until I am finally on 62.5 x 7 days a week.

75mcg is too much for me and I go hyper.......and felt shocking with the anxiety, the stomach aches, the diarreah etc.
I know because Ive been there lol.

[Max914]

Another quick update.  Back on May 26, I had the RAI.  Exactly four weeks afterwards I visited my endo who promptly put me on 75 mcg of Levothyroxine.  Now its been a month since I began the hormone replacement.

Deb is on the money.  I'm now really aware of  symptoms and she's right.  I'm hyper right now.  I thought the endo would wait longer to let my thyroid die off before putting me on replacement.  The tell-tale signs are my heartrate, feeling warm, sweating (and stinking), and that horrible feeling in the gut at times.  I also feel weakness and have lost a little weight.  On the bright side, my brain feels good, maybe a little anxious.  I will test my levels next week.

MamaBush, I'm waiting for the hypo symptoms.  My current dose may be a little high, as Deb noted.  I look forward to gaining some weight and feeling stronger and I hope I can retain my current mental clarity.

The one symptom I really hate with hyperthyroid is the upset stomach.  I hope that it will resolve itself as I go hypo.  I did some research that brand name drugs like Synthroid may be better.  Another option is Armour.

[MamaBush]

Great to hear, Max.

Just a piece of advice, watch for any of the hypo symptoms returning and report them to your doctor right away.  Some of us end up feeling "normal" again when first starting on a T4 replacement medication, but after several months, we end up with the hypo symptoms returning.

Also, your heart palpatations may decrease over time as your body adjusts to the medication.  Mine did, and I was able to lower my one cardiac med as I adjusted to the T4 replacement.

[Smilerdeb]

I had RAI 12 months ago Max and never looked back.
Altough a starting dose of 75mcg is a bit high so watch for hyper symptoms.
That could be the reason you are still getting palpatations.
I started on 25mcg, went to 62.5mcg and am still on the dosage.
I did also get up to 75mcg and went hyper so had to start from scratch all over again.
Its worth mentioning that some people are super drug sensitive to the T4 meds and may need a smaller dose than the average person.

Isnt it great to finally be ALIVE again and not just EXIST? lol :)

[Max914]

Just to follow up, I saw my endo on Tuesday which was exactly 4 weeks after RAI.  I was going hypo with symptoms like feeling cold and muscle cramping.  He put me on Levothyroxine (75mcg) to start right away.  Also, he told me to keep taking Toprol to calm my heart.  He wanted TSH and FT4 measured a few weeks into it.

I notice a difference just after 5 days.  I'm feeling more energetic and warm and not having anymore night sweats.  My heart rate has gone up which is why I take Toprol.  I'm hoping this will subside.  It feels good to have energy again.  Yesterday I jumped in the swimming pool even though it was freezing.  After being down so long, hopefully this will be a new era.  So far, no regrets about getting RAI.

[MamaBush]

The combination synthroid and cytomel not only helped my eyes, it helped lessen the muscle aches and pains, gave me back "some" energy, and my skin no longer has the hard dry areas. I can tell when it wears off though...I crash and I hurt so bad.  The pharmacist said they don't make it in extended release form.

I'm surprised your endo didn't give you specific instructions for how long to continue the methimazole.  I know I had to reduce my dosage in half, then stop completely.  THEN come in for blood work to make sure there is no further functioning.

I'm interested in what your endo says next time you go. Keep us up-to-date please.
I may learn something new, but so far, my endo has been fantastic.  He's a little concerned with my levels (can't remember them, and don't know how you guys all seem to remember yours), but said he's not concerned enough to make me continue my life with such a poor quality as I had been.

[Max914]

Stella:  It's now been 3 weeks since my RAI and I'm feeling the effects of hypothyroid coming on.  But I still take half a pill of toprol to slow the heart down.  What I want to do is have all the methimazole out of my system when I see my endo next week so I can get a good reading.  It seems to me that there is a time lag with everything.  It takes time for the ATD's to work and then when going off, it takes time for them to go away.  Just a guess.  I'm not sure if the ATD's are helping my eyes much so I just quit using them a couple days ago.  From what I hear the eyes resolve themselves after several months or even a year or two.  I guess I'm finished with methimazole.  Thanks.

MamaBush:  A combo of synthroid and cytomel helps the eyes.  That's good advice.  I see what your endo did.  Kept you on methimazole for awhile till you went hypo and then waited a few weeks to put you on synthroid.  Although my eyes are not too bad, it's a bummer with the tearing and dryness and feeling them stick out when I wash my face and how they feel in the morning.

I went hypo before my RAI while on methimazole and toprol before RAI.  My TSH went >150 and FT4 < .02 .  It does feel like getting hit by a truck.  I was sluggish and slurring speech.  My skin was dried out and I gained some weight (which is good in my case).  Back when I was hyper, my stomach was always growling.  I ate alot yet still lost weight and was shaky.  I prefer hypo because I can eat less and not be hungry so much (good in this economy).

Thanks both for your info.  Cheers to thyroid stability.  

[MamaBush]

My endo had me go back on the Methimazole a week after I had the RAI, then went back in for blood tests about six weeks  later to make sure my thyroid was non-functioning. Once my levels were completely non-existent, I was taken off the methimazole and started on synthroid about another month later, then a combo of synthroid and cytomel over time.

So, yes, endos will have you go back on Methimazole after RAI, but only temporarily.

I found that once my thyroid levels were non-existent, that my eyes became very bad, burning, watering, pressure, etc.  My eye symptoms lessened once I was started on synthroid, but began getting worse over time.  Once I was placed on the combo, my eyes have been fine, as well as no more muscle aches and pains, energy is back, so on and so on.

I will say that my endo told me I would know exactly when my thyroid became completely inactive, that I would feel like I had been hit by a Mack truck...he was correct.  It was HORRIBLE.

[stella5349]

Going on Methimazole and toprol is for hyperthyroid and really you shouldn't need it - per say - after RAI.

Labs should be ran to determine IF you are still hyper - but usually that takes 6 weeks after RAI to do.

No one can determine how fast your thyroid will die off after the RAI. It just depends on you and your gland.

Once RAI is induced - 85% of it goes directly to the thyroid. I don't like ATD's effect anything - but I am not sure.