[cathy420]

#1017959

I have had Grave’s for years now, I believe it started after youngest was born in 1995. I did not realize this was my problem until about 2 years ago. I have been through a never-ending procession of stressful and traumatic events in the past 15 years, childhood was no picnic either.

I have been on medication for 1-1/2 years but this has only partially helped, not enough to make a real difference. Blood tests still come back very hyper. I have gone from working a full time professional job, to part time, to being unemployed due to severe symptoms. Extreme heat, rapid thumping heartbeat, tremors, loss of strength stamina and energy, insomnia, mental confusion, poor memory, inability to concentrate, hair loss, goiter, impulsive behavior, irritability, depression, protruding eyeballs, anxiety, appetite problems,(no appetite for a few weeks then ravenously hungry for a week or so.) Before meds, my weight would fluctuate up and down 10-15 pounds each month but now my weight is slowly creeping up. I don’t feel up to doing any exercise and have very little motivation to do anything except what is absolutely necessary.

I have not had any health insurance for 5 years. I had to sell my house last year because of all this, and now living in a crappy apartment and using the money from my house to live on and pay for health care out of pocket. The money is going to run out by the end of the year, and I am really worried. This has been really hard on my kids too. I have become somewhat of a hermit, and only leave home when absolutely necessary.

I’m feeling desperate to have a more normal life and brought up RAI with my endo. She scheduled me for next week but I am starting to have second thoughts after reading about others’ problems after treatment. It would be helpful to know what my odds are for a good outcome. I don’t want to be worse off or end up being hypo with a whole new set of problems.

[Ski]

#1061841

The fact is that most of your problems have been due to the imbalances you’ve suffered, and your inability to find normal, stable levels. Your body literally cannot heal until you are stable. RAI can at least remove the uncertainty of antibody action on your thyroid, since the thyroid cannot react to the antibodies if it no longer exists. Once your thyroid completely dies and you go hypothyroid, you take thyroid replacement hormone and come back into the normal range, so you don’t go hypo and STAY hypo, you go hypo (which is the goal) and then successful management of thyroid replacement hormone can bring you finally into normal, stable territory, at which point all the problems in your body can BEGIN to finally heal.

It does take a little time, but you’re feeling better and getting closer to normal all the time, and the capricious nature of the antibodies can no longer affect your outcome. Also, without insurance, replacement hormone is not very expensive, so it’s not something that you would find a particular "burden" in order to remain healthy. Just my two cents.

Since meds haven’t worked well for you, removal would seem to make sense, but you do have a second option, which is surgery, if you’d prefer to go that way. The advantage to surgery is that you know precisely when you no longer have a thyroid, rather than guessing after RAI, but if you talk with your doctor ahead of time and vocalize your desire to destroy the thyroid completely, they’ll likely compute a large enough dose to make that happen. Keep in mind that even a "large" RAI dose for a Graves’ Disease patient is still very small when you put it in perspective ~ thyroid cancer patients take RAI doses 10 to 20 TIMES what we take, and even that is considered safe.

Good luck to you, and I hope you find normal, stable levels soon! The roller coaster you’ve been on can’t have been any fun…

[cathy420]

#1061842

Thank you so much for responding! I will go through with the RAI on Wednesday with confidence that the future will be better. I have so much I still want to do with my life, and look forward to the possibility that I can. Reading through the posts here and seeing how much you have done for others here gives me hope as well.

Would you be able to give me some direction on how I should deal with the after-radiation protocol? Although I like my doctor and trust her, she has given me no direction for this and is hard to get in touch with. I have read a lot on the internet but see a lot of conflicting info and need to know what is ok to do. I have read: cover mattress with plastic, throw out pillows afterward, flush twice, etc. I have a 15 year old daughter who will be staying away for 4 days after and want to make sure I keep her safe. We have just 1 bathroom so that may be an issue. Can I cook for her? I have a small car and can’t get an arm’s length away, can I drive her to school? (20 min one way). Our bedrooms are adjacent and so technically sleep just a few feet apart. Any more detailed info you can give me will be helpful. I don’t know if this info has already been provided here, there is so much to read through!

Thank you again, I will let you know how it goes,
Cathy
(do I really need to throw out my pillows? :{} )

[gatorgirly]

#1061843

Ski, you mention that with surgery, thyroid removal is a sure thing whereas with RAI, one must "guess." Is that accurate?

I had RAI back on Feb. 18 and discontinued PTU one month afterward. I have had labs every four weeks since the RAI, none of which show me being hypo but normal for the first time ever since diagnosis (with no ATDs, yay!). I also had an ultrasound on April 12 because I have been having problems swallowing. The ultrasound showed a significant decrease in the size of my thyroid compared to the ultrasound I had when I was diagnosed.

So I guess my question is, where is the guessing in this situation? Doesn’t everyone post RAI receive regular bloodwork to determine exactly where the thyroid levels fall? I realize that with surgery, one becomes hypo immediately but I don’t feel like my physician has ever guessed other than saying, "You probably will be hypo within 6-8 weeks, but we will use labs to confirm that." Between the labs and the ultrasound, aren’t those sure things?

Cathy – my endocrinologist also left me with very little information about the details of the RAI. I learned a lot beforehand by reading people’s experiences on this board. However, I was so relieved that the radiologist tech and the radiologist spent a LOT of time with me discussing pros, cons and what precautions I would need to take. Granted, this was all 20 minutes before I was scheduled to take the pill but they made sure I was very clear on what it would and could do, and that I was 100% sure I wanted to go through with it. I think because endocrinologists are not radiologists, they are less knowledgeable on the details of RAI other than what their patients report back to them afterward. Please make sure you ask the radiologist any questions you have not found the answers to, even if it is as you are about to swallow the pill. And good luck – trust me, you’ll feel so much better soon!

[mamabear]

#1061844

I can’t say about the RAI, I chose not to have it BUT I also went into remission after having the meds and then getting pregnant with 2nd child and being able to maintain that with no meds and having 3rd child.
After 3rd I had a bad relapse but was able to get back into remission and having a 4th child and am still in remission.

I have a 16 year old son (born 1995), it is not easy with a teen girl or boy doesn’t matter.

I am concerned that this whole time the dr. wasn’t able to get you in range for your TSH. Why did they wait so long or was it due to ins. issues? Sorry to hear you are having health issues with no ins.

What about state ins., if you need some info on it I can help if you aren’t feeling up to finding it yourself. just let me know your state.
Do the kids have health ins?
You didn’t mention a husband or an ex so not sure if he is around, if so does he have ins. for the kids, could he get ins.?

I don’t mean pry and yuo dont have to answer these questions to me, but do answer them to yourself and try to find out a resource to get better care.

[Kimberly]

#1061845

Regarding radiation safety guidelines…definitely follow whatever instructions you receive from the team who delivers your treatment. But if you would like to see some general guidelines, the ATA just released a set of standard recommendations, which have been posted on the Foundation’s home page at http://www.ngdf.org. Be sure and look at the tables that are specifically for hyperthyroidism, as opposed to the ones for thyroid cancer.

[Ski]

#1061846

All I meant by "guessing" after RAI is that there is a period of time when the thyroid continues to function, at ever decreasing levels, as the RAI destroys it. Naturally, when you have surgery, the tissue is out, the gland is not functioning. With RAI, there’s a waiting period ~ and sometimes the dose that’s given is not sufficient to fully destroy the gland, though that’s rarer and rarer these days, because outcomes have been so much better when patients are given a fully ablative dose.

[Ski]

#1061847

Oh also ~ when it comes to post-RAI restrictions, have a talk with your doctor about the basis for their instructions, and ask all the questions that come up for you when you read others’ stories, and I’m sure the two of you can come to a good understanding. Older restrictions were FAR more severe, because always the thought is to be as safe as possible, and over time they’ve begun to understand more about the overall process, so they’ve reduced the restrictions to a point where they are STILL safe, but less restrictive than before.

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