[Khadijah]

#1059473

I go back to the endo in a few days. My uptake was 82% so I am pretty sure I have graves. I think I got it pretty recently as I am in a dance troupe and only started problems in the last few months. I was able to dance 2 hours no problem before and now I can’t dance for 5 minutes!

So, do I need to quit dancing or can I fully recover. I am realizing that getting to normal can take several months, which is very depressing.

will surgery get me to normal faster than RAI? My doctor has left the decision to me. I’d rather he just say what to do.

I don’t get a lot of help from my husband, being sick is not convenient for him. And I have a 5 yo boy. I need to drive him to and from school. I understand you can’t turn your neck for two weeks? If I do the RAI I will have to stay in a hotel for the first two days so my son doesn’t think I am rejecting him. He only let’s me give him a bath etc. if I’m in the house w my husband. If I’m away he let’s my husband bathe etc. his school agrees I should stay away. I will stay the rest of the week at my dad’s house.

So, that is ny main dilemma has what is best to do? I don’t plan on having another child as I am already too old but just the thought of being radioactive is scary since I don’t need to have my bones less strong.

I am so depressed…But, hearing peoples experiences is very helpful.

[Bobbi]

#1174886

Hi, Khadijah, and welcome to our forum.

Typically, we are told not to exercise while we are hyperthyroid. That is because the excess thyroid hormone not only causes our hearts to beat too fast (and inefficiently, at that), but because it can lead to arrythmias which are dangerous. So, unless your doctor has specifically told you it is ok to dance, you should not.

Once you get your levels back under control, by whatever means, you need to understand that you will probably have to rebuild muscles for strength and stamina. We lose actual muscle mass while hyperthyroid. It tends to slowly come back, but it needs to be restrengthened wisely. In other words, when your doctor clears you to dance again, etc., do not be discouraged if you can only dance for 15 or 20 minutes before fatigue sets in. Your body has taken a serious health hit, and needs to rebuild itself.

As for which removal option is the best for you (RAI or surgery), I think you need to listen carefully to the pros and cons given to you by your doctor. The radioactivity from RAI, though is relatively small, and is completely gone from the body in just a little over a month. (The radioactive element used has a very short life span.) I think Kimberly posted a discussion of the various treatment options in a section at the top of the first bulletin board page. It can help to read through it before you talk with your doctor. As to whether you will be able to drive your child to school soon after surgery, I do not know. Typically, we are told not to drive after surgeries for a while. But that would be a good question to ask your doctor.l

If you do decide on surgery, make sure that the surgeon you choose is well-qualified, does LOTS of thyroid surgeries every year, and has a low rate of complications for those surgeries.

[snelsen]

#1174887

Hi, Khadijah, welcome to this great forum. I suggest you search the forum, for people who have posted their own experiences about RAI and surgery.
Good idea to read the references Bobbi mentioned. There is no “wrong” choice. YOu will find the same thing over and over again from others who have been in your position. It is very anxiety producing when you are in the decision process,and when they have a decision, and move forward with it, they are much more relaxed, knowing that they have taken action on their way to recovery from this illness of Graves’.

It is VERY typical of our spouses, co-workers, friends, employers, not to understand ANY of this. One thing that helped me a LOT, is to think back to before I had Graves’. I did not know a THING about it, and if I had a co-worker who became irritable, anxious, hyper, crabby, “not themselves” I would wonder why they were like that, and why didn’t they “get a grip>” This is typical. Education of yourself, and a simple explanation to others, is a beginning way to explain it. One of the best things to say, is that there are treatments that you are exploring, and in a few months, you will be pretty much back to “your old self.” In the meantime, ask for some slack and understanding. It is REALLY difficult for others to understand at all, cause it is kind of an invisible illness, not like a broken leg with a cast that everyone can understand!!!
YOU will get better!
Shirley

[Naisly]

#1174888

Hi and welcome.

I am wondering why your endo never brought up the 3rd option – achieving remission with medication?

Seems in your case it would be a good place to start, specifically since you wouldn’t have to be out of commission and it would at least give you some time to educate yourself and hopefully your husband on the disease.

~Naisly

[Khadijah]

#1174889

Thanks for the responses! I have read the “treatment options” thread and all the threads going back about 15 pages!

Bobbi! Thank you about the no exercise comment. That explains a lot. No my doctor didn’t mention it but I only saw him once and I probably didn’t mention the dancing because right now I’m not and I know I won’t be for a while. But, I will ask because I was thinking about doing yoga or something about my muscle loss. That is freaking me out the most. I feel like a blob of jelly.

Naisly- no, I especially refuse to attempt remission with the medication. I don’t want to risk my liver or kidneys under any circumstance. Also, im pretty sure i have no chance of remission with my levels. I am leaning tward RAI but now i am concerned about my eyes. I have very bad eyesight to begin with.

Snelson- I know it’s hard for people to understand but I’m thinking my husband brought it on. He is my stress trigger but I got too sick to fight for a divorce. I hope I get better so I can do something about my bad situation.

I would love to hear more about people’s recovery. It gives me hope!

[Kimberly]

#1174890

@khadijah – Keep in mind that *all* of the treatment options have risks. Liver damage is a fairly rare side effect of anti-thyroid drugs, but it certainly *is* something to be aware of when making a decision. I am not aware of formal studies on ATDs that indicate a risk of kidney issues.

Also, none of the three treatment options are “quick fixes”. Finding the right dose of replacement hormone takes time. Once you eventually start to go hypo after RAI (or immediately after thyroid surgery), your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.

If you’ve been through the resources in the “Treatment Options” thread, you are well on your way to making an educated decision. Take care — and keep us posted!

[LaurelM]

#1174891

Hi,
Sorry you are going through such a rough patch. Even if you want permanant removal, your endo might put you on an ATD (anti-thyroid drug) to bring your levels down prior to RAI or surgury. This is my 2nd bout with GD. I had a near 6 year remission. I was leaning toward a thyroidectomy last spring when I came out of remission but my endo said it would be safer to be stabilized at a normal level for a couple of months before we consider either proceedure. Just saw him again today and even though I have been in the normal range for a few months, we are opting to stay on the PTU for now. I’ve been happy with it. One thing to consider is that the ATD gives you time to consider your long term options while working to bring down your levels. I also noticed that once my levels are in the normal range, I CAN think more clearly and a great deal of the GD induced anxiety goes away.

Best wishes for a speedy recovery!

Laurel

[Naisly]

#1174892

Khadijah wrote:

Naisly- no, I especially refuse to attempt remission with the medication. I don’t want to risk my liver or kidneys under any circumstance. Also, im pretty sure i have no chance of remission with my levels. I am leaning tward RAI but now i am concerned about my eyes. I have very bad eyesight to begin with.

Hi Khadijah,

I think the best thing can you do at this time is educate yourself. You don’t need to go into remission, but at least you can go euthyroid – which I believe is today’s practice before any RAI or surgery. Also, it is rare for someone to get a reaction from the medication. This is why your attending physician will monitor your blood work every 3-4 weeks to start (same for RAI/surgery). In the United States the medication has been in use for more than 60 years and I haven’t heard of kidney issues as Kimberly said.

For me personally, the risks of cancer from RAI (I-131) greatly out way the risks for liver or wbc issues because I know me and doctor are monitoring my blood work and will stop it all together, or change the dosage if we find it is causing any problems, where as I can’t do that if I get cancer – too high of a gamble for me.

Hope you feel better soon.

~Naisly

[adenure]

#1174893

Hi Khadija,

I’m sorry you’re dealing with Graves. This board is a great source of support and information though! I just wanted to say that if you choose RAI or surgery- especially surgery- your endo. will want to have you euthyroid before hand. Surgery becomes much more dangerous and the risk of thyroid storm is much greater bc of the stress on the body of surgery- especially if your hormone levels are out of balance and hyper.

I was one of those who was part of the 1% who had problems with ATD’s. Within 7 weeks on just 5 mg. of methimazole, my liver enzymes increased 8 times the normal amount. The doctor on call told me to stop taking the medication right away and had my liver labs redone 3 days later to make sure my enzymes started to come down- which they did. A few months later, I was back to normal and the abdominal ultrasound showed no damage at all. Fortunately, the liver does regenerate quickly and most people who end up having liver issues on ATD’s will be able to reverse the damage- as long as you are being closely monitored and having a liver panel/ labs done frequently. I didn’t have any of the symptoms of liver issues like jaundice, dark urine etc etc… but, still happened just the same. The one thing the ATD’s DID do for me was get me euthyroid in 7 weeks which allowed me to have surgery!!! So, although not a possible long term solution, it did let me get to a place where surgery was safe and possible.

You may not want to try that, but know that MOST people do not have liver issues with ATD’s, and if you do, they can be stopped and most liver issues are reversed and the body heals itself if caught quickly enough. As a side, when I was on methimazole, I didn’t drink alcohol or take Tylenol as they are metabolized through the liver as well.

I was a dancer- I danced professionally for 6 years, so I understand where you’re coming from there. I don’t dance anymore and haven’t for 15 years or so, but I’m still active and love to exercise. I was fortunate in that my Graves was caught quickly, so although I experienced muscle loss, I rebounded pretty quickly once I had my surgery and started to heal. I’m 4 months post surgery and was able to resume hard cardio, good workouts for about 30 min. at a time at 3 months post surgery. One month of that, and my muscle tone is pretty much back to normal. I took walks and took it relatively easy with exercise from about 2 weeks post surgery until 3 months- then started to rev it up a bit at that point.

I didn’t choose RAI bc I have a family too- I have 4 boys and didn’t want to be away from them and I’m breastfeeding my baby. I also had other concerns, but the big ones were my family, nursing, and not wanting a dead thyroid in my body- kind of weird I guess- but I’d rather have it out, then dead in there.

I would suggest trying the ATD’s if your endo. is willing; the meds. will at the very least, help you get euthyroid which will help you discern better your choices and make the right choice for you & it will make that decision safer as well.

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