[ewmb]

#1067282

Hi,
had RAI on May 8th glad I did. It was my first choice and it took me two years to get what I wanted. It’s not easy and a lot of your symptoms are ones that others here have had. You can read all of one person’s posts by clicking on their name, like ewmb, and getting a listing. the foggy definitely, the itching I didn’t have, the dry skin not so sure but I did go through some nose bleeds at one point, The hunger…. oh so much, I used to eat and feel like I could eat a whole anything and still be hungry a few minutes later.

hang in there and keep reading. It’s so nice learn here that others have gone through what you are going through.

ewmb

[hyperteacher27]

#1018814

Hello All,

I am a 27/F newly diagnosed with Graves’ Disease.

I am scheduled for RAI Nov 30th and am not changing my mind, so would appreciate only positive feedback on that please.

I would love to hear from anyone else who shares some of my odd symptoms that I am not even sure are Graves’ related.

I am SO itchy. From head to toe, I am insanely itchy.

I am always hungry. I feel like I get hungry every hour.

My nose and throat are wicked dry. My nose is actually almost always cracked and sometimes bleeds when I blow it. My throat is always yearning for water.

I am super foggy. I can never focus. I have trouble paying attention to things: people talking, driving, etc.

Honestly. This disease sucks. I feel like nobody understands what I am going through. I am trying to stay positive and not complain, but it is HARD.

Please respond.

Thanks and best wishes.

[Julie3588]

#1067283

Looking back, I do remember getting chronic bloody noses right before I was diagnosed. This continued for quite awhile, about a year, until my levels were normal. I have no idea if it had anything to do with Graves, but I suppose it could have. I’ve also noticed that my already sensitive skin got way worse once I got Graves. It’s chronically itchy and I get hives once in awhile now. My endo said the skin was definitely related to Graves. Hope this helps ” title=”Smile” />

-Julie

[teacherhelper]

#1067284

I was also just diagnosed with Graves. I apply an anti-itch lotion to my skin, especially at night. It’s an over-the-counter that I got at Walgreen’s. It does help. I only started taking the 10mg Methimazole Tuesday and take 1 pill twice a day. It’s too early in my treatment to really notice any effects yet. I never realized all that was involved with GD until I started reading posts and getting other information online. I have another friend with the disease so I do have someone close to talk to. I don’t have lab work done until Jan. 17. Then I’ll get to see if there are any changes. I do see the doctor Dec 21, so I am writing down things that I would like answers to. In the mean time, I leave it all in God’s hands! If He has brought me to it, He will see me through it!

[uptooearly]

#1067285

Hi I too was recently diagnosed with graves. I undergo radio iodine therpy on the 29th. Im scared to death. Reading some of the stories has me thinking maybe i should not go. I havent told my husband or children too much about whats going on with me. I dont want to worry them and honestly so far ive understood very little of what my doc says. Theres a huge communication problem as he knows very little english and his words make very little sense too me. Can any of you help kinda walk me thru all of this. I live in a small town and he is the only endocronoligists for 80 miles. Im taking 6 propylthiouracl per day along with 1 heart pill per day. What can i expect after the treatment. I’ve gained 10 lbs in 6 weeks and am not enjoying that at all. I still have my hair and no bloody noses thus far. Please walk me thru this. I want to kno what to expect.

[Bobbi]

#1067286

Uptooearly asked some questions about what is going on. I’ll try to give a basic answer. If there are other, specific questions, please ask.

Essentially, when we have Graves disease, our bodies overproduce thyroid hormone. Excess thyroid hormone causes us to lose muscle and bone, and interferes with the proper functioning of just about every system in the body. In short, it makes us very sick.

There are two basic ways to fix the problem of excess levels of thyroid hormone. The first is to take a drug we call here an antithyroid drug (ATD). There are two basic ones: PTU (propylthiouricil) and methimazole. These drugs act as a chemical barrier to the production of thyroid hormone.

The second way to fix things is to remove all or part of the thyroid. The removal can be done chemically, using a radioactive isotope of iodine (I131) or surgically. RAI is the most commonly used way to remove thyroid cells here in the U.S. Iodine is used in the body ONLY in the thyroid, so when we take the pill (or sometimes liquid) the RAI goes into the thyroid and not any other part of the body. Any of the RAI that does not get accepted into the thyroid is eliminated from the body within a couple of days. The RAI has a very short life span and is essentially gone from the thyroid in a little over five weeks, but while it is in the thyroid, it destroys thyroid cells. It has been used and studied for over 50 years, and has a good safety record.

There are a variety of reasons why doctors might recommend one treatment option over another. Some of it has to do with the medical condition of the individual patient. It is unfortunate that you cannot communicate well with your endo, to find out why this treatment has been recommended to you. But I can tell you that my mom had RAI back in the early 1970’s, and I had it in the late 1990’s. It made us well again, and we regained our health.

What you can expect from the RAI is a sore throat for a few days afterwards. Mine was almost insignificant; other folks report more discomfort. And, about one week after RAI (give or take) damaged thyroid cells release stored quantities of thyroid hormone. We call this period "dumping" and it makes us more hyper than our normal hyper levels. Your doctor may give you instructions to take additional medication during this time. Sometimes, though, people do not need added medication. Again, it’s up to the doctor. After three or four days of the dumping, you should expect to see gradual improvement in how you feel. We can expect to go hyPOthyroid after RAI( and surgery),but this is handled by taking one replacement hormone pill a day. This pill is chemically identical to our body’s own T4 (thyroxin — thyroid hormone), is used in the same way.

If you have other questions, please feel free to ask.

[Author]

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