[jcupcakes]

#1018315

Ok so a little about me and my situation:

I’m 29 years old and diagnosed in April of 2010 rather quickly. I have 2 sisters 27 and 23 who were diagnosed prior. (The 27 year old was diagnosed 4 years ago at 23 after a year of symptoms and no answers and the 23 year old diagnosed at 21 after a year and half of no answers and symptoms) I had a physical in Feb and everything was fine and then in April started having the racing heart (140bpm resting) and palpitations, sweating and heat intolerance, and the constant hunger. Since I had such a strong immediate family history of Graves Disease it was easy and quick to diagnose.

Prior to seeing the Endo, my labs were TSH <0.005, FT4 2.4. I saw the Endo and started meds after the RIU to confirm Graves and 6 weeks after starting methimazole and propanolol my levels were worse with TSH <0.007 and FT4 3.2. She immediately increased the methimazole to 30mg from 20mg and started a potassium iodide regiment for a week and this corrected the levels to the higher end of normal range. Back on just the methimazole 20mg I had labs drawn 6 weeks later and the TSH was 0.011 and FT4 was 3.2. The endo called made me an appt for 2 weeks later and increased the methimazole to 30mg again. When I saw the Endo, she was very insistant that I needed to seriously consider RAI because I was extremely hyperthyroid. I had labs drawn on that same day and TSH was 0.014 and FT4 was 4.4. She increased the methimazole to 40 mg and told me the meds were just not seeming to work and my options were surgery or RAI.

Since I have 2 sisters with Graves, I have discussed this with family before. My sisters are very anti-RAI and surgery. My older of the younger sisters was told that there was risk of thyroid cancer after RAI further in life.

I’m just wondering if someone could tell me about their experiences with both RAI and Surgery. I’m trying to make a difficult decision but an informed one.

I live in Boston and I work at an excellent Harvard Medical School Affiliated Hospital but I’m finding it hard to find someone who isn’t trying to sway me one way or the other.

on a side note: the higher the dose of methimazole the worse I have whole body itching with no rash or hives. I was told this is just a symptom of graves disease but it went away almost completely when the dose was lowered. At this exact moment its probably the worst it has ever been so if anyone was a suggestion for that

Thank you for taking the time to read my story.

[Ski]

#1063965

Hello, and welcome!

Sounds like you’ve got quite a bit of info already, and that’s a good thing.

I don’t have a lot of time right now, but I wanted to make sure your post was approved so you can get responses, and I also have a couple of very quick points to make.

If you are allergic to methimazole, it can be a cumulative and ever-worsening thing, which can end (in the most severe cases) in anaphylactic shock, so it is nothing to mess with. Some people do have allergic reactions that lessen over time, and Benadryl taken sparingly along with lowering the dose can resolve it. Others have far worse reactions and simply must not be on the medication. There is a second ATD, I’m sure you’re aware (PTU), which has of late become less attractive for doctors to prescribe because of the higher rates of liver failure. BOTH methimazole and PTU are capable of causing liver failure (that’s why doctors check liver enzymes regularly), but PTU seems to have a higher risk. Even so, if you are interested in pursuing it, you may be able to take PTU in order to get your thyroid hormone levels down and begin to heal.

There is absolutely *no* proof that RAI causes (or can cause) future thyroid cancer, and in fact it doesn’t make much sense ~ consider that the goal of RAI is to destroy all thyroid tissue. How could you end up with thyroid cancer, if you have no thyroid? RAI has been used for more than 60 years to treat Graves’ Disease, and patients have been carefully studied, without any findings of increased rates of cancer, over the general rate in the overall population. That said, there are plenty of sites out there who revel in passing along just such information, without the actual science to back it up. I know there are people who simply, viscerally, do not like the idea of RAI, and they will say anything, even to the extent of lying, to keep people from using it for treatment.

All that said, your treatment decision is YOURS. I chose RAI for myself, it worked, I am healthy and thriving now. I took some real heat from family members who felt, viscerally, that they would not prefer that treatment. It was not their body, it was not their illness, and they didn’t have any right to make my decision for me. (By the way, same goes for your doctor ~ their advice, experience and opinion are definitely appreciated, but they are not the "boss of us.")

I’ve got to run now, but I know you’ll get lots of good input. Strength, my new friend. ” title=”Wink” /> You’ll get healthy, I know it.

[Harpy]

#1063966

jcupcakes
Methimazole is more prone to giving the Hives/Rash reaction, but it doesn’t mean that you are completely allergic to it, often that just means, as you have noticed that your dose is too high.
Have you had your FT3 tested?
You mentioned FT4 & TSH, but not FT3 which is the actiove hormone, just making dose adjustments on FT4 & TSH is not always appropriate and along with the FT3 the patients own physical symptoms need to be taken into account, did you feel hyper when your FT4 was higher, was your heart rate actually up?
The one thing about GD is it is not a simple condition and there is no easy quick fix.
All of the three most effective and commonly used treatment options all have their pro’s & con’s and most of what anyone tells you will have some bias, so you will need to look at all the information presented to you and make a decision that you will be comfortable with.
Different doctors will have different preferences for treatment and different countries also seem to have different protocols for treatment of GD so there is obviously more than just medical science that drives these differing attitudes.
From what I have read there are also a lot of incompetant medical professionals out there as well, not that I’m suggesting your doctor is incompetant, just that you need to be informed enough to be able to make decisions that you are comfortable with, you need to be able to ask appropriate questions and have the knowledge to judge whether the answers you are given are to your satisfaction.
I’d suggest you look at a variety of sources to gain as much knowledge as you can about your condition and what the different treatment options may mean for you.
The link below is a good resource written by thyroid disease researchers:
http://www.thyroidmanager.org/
Good luck with your journey and I hope you feel better soon.

[jcupcakes]

#1063967

I had the T3 drawn originally and it was 457 and 6 weeks after starting Methimazole it was 649. Sorry for leaving that out.

My sister had anaphylactic shock from the methimazole back in 2006 and was switched to PTU. She had hives and that tight feeling in her throat like it was closing up so she went to the ER in the middle of the night after calling me. I dont have a rash or hives at all. Just the itching crawling skin.

I should have mentioned that the Endo increased my propanolol to 120mg so my symptoms were mostly gone (except for the frequent urination and those lovely graves disease bowl movements). Although when she thought I was getting better she decreased it to 75mg and I felt terrible. I was very shakey and most of the summer I couldnt stand longer than a minute or two because of the overwhelming feeling I was going to pass out. So I’ve had the symptoms to go along with the increase in T4 and T3.

To buy myself time, I’ve told her that I wanted to speak with people who have done all of the treatments to better understand the decision and I also told her I wanted to wait to see if this dose was going to do anything so I’m having TSH T4 and T3 drawn again in a few weeks.

I really appreciate your responses. Thank you so much for your feedback.

[Bobbi]

#1063968

Hi —

I just want to reinforce Ski’s message to you. And let you know that I am another person who chose RAI. I did it 13 years ago, and it brought me back to health. My mother had RAI in the 1970s. It also gave her back her health. She lived for almost 30 more years with no thyroid-related problems.

Researchers have looked, and looked hard, for over 50 years to see if they can find problems caused for us by RAI. They have not produced any research results that substantiate your sisters’ fears.

Your decision should be based on fact, not fears. ANY of our treatment options are safer, in general, than remaining hyperthyroid. There are medical reasons why an individual should not pursue one treatment over another. For example, going into anaphylactic shock on the meds would be a very good reason to avoid that treatment option. There can be similar, medically sound reasons for either doing, or avoiding RAI or surgery. Your doctor is going to be your best guide to those. It is most definitely your choice. But I would recommend that you give your doctor significantly more credence than anyone else. And if you doubt your doctor, get a second opinion from another, equally well-trained doctor.

I do wish you good luck with your decision. I know how hard it is. But keep your focus on the fact that we do get well again if we get appropriate treatment soon enough.

[jcupcakes]

#1063969

I’m sorry if you got the impression that I was asking someone to give me advice on what to do. I’m looking for others to share their experiences with these treatment options. It helps to know what other people went through in chosing a treatment and what that treatment meant for them. I’m not looking for anyone to tell me what to do. My doctor can tell me what she recommends all she wants but she herself has never had this done and its ultimately my decision. I just haven’t heard from anyone having had RAI or surgery since the majority of people I know went the medication route with greater success than I seem to be having. Thank you all for your support.

[genuinruby]

#1063970

jcupcakes, like yourself, I went on a quest to find those very same answers. I searched the archives of this board and visited a few other sites. It was an overwhelming task sorting thru the information out there. First, you have to be able to seperate the emotional attachment that each person has attached to their treatment. Then, finding people who have stuck around after they are feeling really good to encourage the rest of us is also a challenge. And let me say now, to the regulars of this board and even to the ones who have popped in and just given an update on occaision, MANY MANY THANKS. Grave’s and the treatment of it is individual to each and every person. Not one of us will feel the same way as another with the illness or with the treatment of our choice, I had to get a feel for what and how I thought my body would react based on how it had reacted to prior decisions I had made for trying to get it under control. I chose surgery, It was one of the most difficult decisions I have ever made. I was watching the Wedding Crashers on tv awhile back, and Christopher Walken’s character said to his daughter, "We have no way of knowing what lays ahead for us in the future. All we can do is use the information at hand to make the best decision possible", and that is when I understood what I needed to do
.
I believe the choice we make will be the right one simply because it is propelling us forward towards recovery. Which takes time, no matter what route we take. Keep aasking questions, sooner or later someone will give an answer that will inspire you in a different light and things will be made more clear.

Ruby in Reno
ps…Surgery on Monday went well. Usual yucky, anticlimatic recovery type issues, feeling better but feel like I look like a chicken with it’s craw full of gravel, due to the swelling at the incision site.

[LaurelM]

#1063971

I went into remission with the help of ATD’s (and perhaps my 2nd pregnancy helped too) and I’d consider them again if GD becomes active again.

Since ATDs seem to not be ideal for you I wanted to tell you about a friend of mine. She had thyroid cancer (not GD) in her mid 20’s. She was treated with a much higher dose of the RAI than GD patients receive (she was required to stay in the hospital for a few days after dosing) and she also had to have a surgical tyroidectomy. She takes her replacement thyroid hormone daily. She is now in her late 30s and looks and feels great. And, has a healthy & happy almost 1 year old baby!

Based on her descriptions of each method of treatment, I’d be comfortable with RAI or surgery. For me it would just depend on my life circumstances at the time.

Only you can make the decision (with Dr. input) for what will be right for you.

Best wishes,
Laurel

[snelsen]

#1063972

Agree with Laurel and some of the other posts on this subject. I chose surgery. Liked it. Glad. Felt very in control because I chose the treatment. I think that is the most important thing. Regarding recovery, I think I have written on this before, and there have been several people who had surgery this summer. Neck muscles are sore, like after going skiing all day when those muscle do stretching that they don’t usually do. Slight sore throat, but probably more due to the the intubation than the surgery. If I think of anything more, I will write later next week. I just had eye surgery, and have used my eyes a lot today, and they want a rest.
Shilrey

[Kimberly]

#1063973

genuinruby wrote: ps…Surgery on Monday went well. Usual yucky, anticlimatic recovery type issues, feeling better but feel like I look like a chicken with it’s craw full of gravel, due to the swelling at the incision site.

So glad to hear that surgery went well. It’s great for others to hear the positive feedback. Take care of yourself!

[Julie3588]

#1063974

Hello,

Just wanted to add another experience to the others here. I was started out on PTU, found out I was allergic (major hives! yikes) then switched to Tapazole. I went into remission for exactly one year then relapsed and ultimately chose RAI. I decided that I didn’t want to spend the rest of my life falling in and out of remission, mostly for my own piece of mind (I’m a worrier). I also HATED the way that the ATDs made me feel, really hollow, sleepy, and depressed. Of course this experience was entirely personal. If I had tolerated the ATDs better, I think I would have given them another shot, but I just didn’t have it in me. I am now a bit over a year out from RAI and am FINALLY beginning to feel healthy again ” title=”Very Happy” /> I am finally on a stable dose of Synthroid and have been feeling better than I have since my initial remission.

I really think you just have to go with your gut on this decision, and like everyone else has said, make sure it’s 100% yours. Best of luck on your road to recovery, there is light at the end of the tunnel!

-Julie

[kristi7877]

#1063975

Hello. I was diagnosed with Graves back in 2007 when I was 29 and after going back and forth with the Tapazole getting me into "remission" so to speak and then going back hyper again I was all set and opted for the surgery after researching all the pros and cons of the RAI/Surgery and staying on the Meds. I had a complete thyroidectomy on March 1 and to this date I have zero regrets about doing it. Luckily I have responded well to the Levoxyl and have had it tweeked a couple of times. My surgeon was terrific up in Nashua NH as I too live in Mass. Best of Luck.

[Ski]

#1063976

Just wanted to jump in with a quick note: T3 levels are very volatile ~ they can change hourly, depending on our need for thyroid hormone ~ so they are not typically the most valuable results on the lab sheet. A chronically high or low T3 level while T4/TSH levels are normal is something of concern (and, I should mention, likely not a result of Graves’), but dosing and treatment decisions are not best made by watching T3 levels.

[Author]

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