Grave's disease, about to go through Radioactive Iodine

[Aviad]

Dear Doctor and the rest of the forum people,

I have had grave's disease for about 5 years.

I tried mercaptizol (methimazole) for this period of time, starting with high dosage of 20mg per day and after a month or so going down and reaching levels of 5mg per day for a year and a half, but the disease came back twice and this is the third time. My endocrinologist suggests I should try radioactive Iodine.

I would like to know:

1) How do patients feel after radioactive therapy? do they feel normal after the adjustment period with the synthesized hormone?

2) is mathamizole really dangerous in the long run? is it true that it's generally not a good idea to take them for years and years due to liver damage or possibility of the development of low white cell count?

If there are any people here who had grave's disease and have gone through the radioactive iodine therapy I would appreciate thoughts and opinions. are you feeling normal? are there fluctuations in levels of TSH/T3/T4?

Thankfuly,
Aviad.

[Mark Lupo, M.D.]

With this history, definitive treatment with surgery or RAI should be considered.  RAI would be the usual choice and is effective in 80-85% of the cases to treat the hyperthyroidism (usually within 3 months of the dose).  The key is to monitor initially for a worsening of the hyper (and treat appropriately w/ beta-blockers or sometimes some more methimazole temporarily) as well as to monitor for hypo and treat early -- to avoid the large swings many people experience.  By 6-8 months, most patients are stable on a replacement dose of levothyroxine and do fine  The other concern is protecting the eyes from worsening graves orbitopathy (by using steroids) if there is already signs/symptoms of thyroid eye disease (graves orbitopathy).

Methimazole can cause a dangerously low white blood cell count and can cause liver damage -- for these reasons it is not an ideal long-term drug.  Although some do use it successfully in this way....

[Renata2020]

I can only relate my experience to you.  I had RAI after 8 months of ATD's (tapazole).  My dose was substantial, 30mci.  I felt nothing right after.  It was a non-event - meaning in the days following, I had no adverse effects.  I drank tons of water and ate hard candy to protect the salivary glands.  RAI was performed in Aug. 07.  I was faithful in having blood drawn monthly.  I went hyper in Sept. 07 which was expected as the thyroid dumped some stored hormone.  In Oct. 07 they said my blood was  normal.  In Nov. 07, I went severely hypothyroid  with a TSH of 111.  In one months time, TSH went from .37-111.  That was the worst part.  It wasn't pleasant being severely hypothyroid.  I don't think that is typical to go so low so fast.  I was put on Levoxyl and am now stable one year later with a TSH of 1.39.

Patience is the key.  It takes awhile to get regulated.  You asked if you feel normal on the medicine.  I really feel well now.  I don't notice a difference between where I am now and years ago when my thyroid was working.  Like I previously stated, the worst part was going severely hypo but going hypo is expected after RAI.  I won't lie - being severely hypothyroid is pretty bad but it was temporary for me.  I can't stress enough how you have to be patient and get the blood drawn.  I have a wonderful doctor who adjusted my medicine in small increments throughout the process.  The medicine was increased not only on my labs but on how I felt.  Its like climbing a ladder, one step up at a time.

I can't address whether the ATD's are harmful in the long run.  I made the decision to have RAI for a variety of reasons.  I can say I do not regret it and feel normal now.  One other key factor was that I did not have any eye symptoms.  If I had any eye involvement, I am not sure what my decision would have been.  

Best of luck to you.  

[hypogirl80]

About 70% of Grave's disease people had RAI in U.S.  So you are not alone.  I had mine a few years ago, So far I am fine. One thing you need to watch at the first 2 to 3 months is don't let youself  get into severe Hypo condition like mentioned by Renata2020.  get the Thyroid supplements ready in advance so you can take them immediately if you feel hypo after the RAI(you will).  If take several weeks to see the doctor, you don't want to wait for that. take the supplements to protect your body.

[moonmonkey]

I had alot of anxiety about the RAI, but I finnally decided to do it and glad I did. It does take time. I myself am still trying to get regulated...it can be a challenge but I do feel better then what I did when I was hyper. After the RAI I did go hypo, then alittle hyper from meds. So it takes time and like others I know that have been through it has given me this advise....It will get better. So you can feel better. Oh I was on Tapazole for a year then did RAI. It was not a difficult process and be careful what you read out there and the stories you listen too. It takes alot of faith to decide what to do but . Im glad I decided to do it...I feel like I am finnaly working on a long terms solution toward getting healthier.

[Mark Lupo, M.D.]

see above reply -- listed at top of replies....

[Renata2020]

I was referring to Graves eye disease which is sometimes called Thyroid eye disease or TED.  More common in people who smoke and have graves.  In its mild form it causes redness and dryness of the eyes and in the worst cases bulging of the eyes.

I was told by my endo to drink plenty of water after RAI.  The radiation not soaked up by your thyroid will be excreted in your bodily fluids, mostly in your urine over the first few days.  He said to drink a lot to get the extra flushed out of your system.  Sometimes the glands surrounding the thyroid can be affected by the radiation.  The hard candy keeps your salivary glands active.  Other people may know more about the why of the hard candy but I ate a ton of Jolly Ranchers over 2 days!!

[Lori16]

I took RAI 9 years ago. I also had graves. I had no side effects. It worked for me. I started Levoxyl had no luck. Then went to armour thyroid for 2 years with no luck. Then I was put on synthroid and ben taking for over 5 years. They say my blood work is perfect, but feel like cramp. Talked to Dr. About cytomel was put on it a month ago along with my synthroid.  I do not feel any better. Trying to figure out if there is any other problems.  Good Luck.
Lori

[Aviad]

Thanks for your replies they are very helpful.

Moonkmonkey, I do see a lot of horror stories on the net and my hesitation stems, partly, from these stories. But I do understand, the people who go through RAI and don't have serious problems are usually the silent ones.

Hypogirl80, by thyroid supplements, do you mean the synthesized hormone? if so, yes I will have my endocrinologist write up a prescription ahead of time so I'll be ready.

Aviad.

[Aviad]

Firstly, Thank you Dr. Lupo,

Secondly, from your experience, do your patients that have gone through RAI reach a status quo where they have to see you only for checkups (how frequently? once a year?).

My hesitation stems from stories I've heard about patients with similiar history who occasionally experience swings in thyroid conditions even years after the RAI.

During the last 5 years, my two rounds of methimazole were basicaly: 20mg for a month or two then going to low doses of only 5mg per day. Would you say even these low doses aren't worth the risk of the aforementioned side affects?

Thanks again,
Aviad.

[Aviad]

okay thanks for the information I appreciate it.

Hopefully the good doctor will reply as well,

Thankfuly,
Aviad.

[Aviad]

Thanks for your reply.

I do not have hyperthyroidism-related eye symptoms, or are you talking about hypothyroidism-related eye symptoms?

why do you need to protect your salivary glands using a lot of water and hard candy?

Thankfuly,
Aviad.