[elf]

#1072974

There is another 22 year old on the other Graves board and she just did RAI – exactly because of her desire to have kids. She got married last September and was all ready to start family but Graves interfered. She’s going to wait for a year before trying.

People do have kids after RAI, as moderators of this board will tell you.

I had Graves for only 3 months before deciding on RAI – exactly because in those three months I envisioned that I would be feeling sick like that (even though my levels were OK with PTU). It’s been 3+ years since RAI, I don’t feel that I have any disease at all. I can eat anything and exersise and pretty much feel like my former self. I had kids just before Graves, so I haven’t been trying, but should I want to, there should be no probs.

[withoutabox]

#1019630

Hi,
I am 23 years old and have had Graves Disease for over 5 years. I started off with beta blockers and tapazole, then moved on to just methimazole I have been in remission at least three times and just yesterday learned that I had relapsed again. I have struggled with the decision of what to do for the entire 5 years. Now my endocrinologist is pushing for RAI and I can’t say I disagree with him anymore. I have tried to talk to friends but they can’t understand what it is to have this disease.
Ok so since I’ve been diagnosed with GD trying to do anything physical, running, riding a bike etc. is scary, even if I am in remission I get light headed, I feel like I am going to pass out etc. In the past year my body has seemed to completely lose its defenses, I have been sick pretty much every other week since august 2008.(was not on methimazole, in remission). I work in a chemistry lab and need to have some sort of precision with my hands, somedays they are just so shaky I can’t do anything. Somedays I am so tired and so achy I feel as though I am in my 60s. I am just exhausted and want to feel healthy again.
I am afraid I’ll never feel healthy.
The reasons I am hesitant about RAI are quite a few:
-I am currently battling depression which I have pretty much had since I was a child. Just a couple days though I starting taking Zoloft
(first time on anti depressants). I am worried that in my fragile state once I go Hypo after RAI I will get worse, considering Hypo can cause depression.
-I have read that getting the RAI treatment can affect a woman’s chances of being able to conceive. I am 23.. I am about start working on my PhD I am not ready for children but I will want them in the future, I don’t want to kill that chance.
– Also I wonder about long term studies to see if there were any other effects from the treatment.

I feel very alone and scared. It seems silly I always thought this disease "wasn’t that big of a deal". No matter what it is or isn’t it affects me greatly on a daily basis.
So I guess I just need support. Any advice. Any stories.
Thanks – Dana-

[hyperm]

#1072975

Hey I can’t help you with that decision as I have been advised against RAI because I want to have more kids.

As for how you are feeling – you are not alone . I am VERY scared that I will never feel well again and like you I told my husband that I feel trapped in this body. Before i was diagnosed after my first little boy (4 years ago) I went to the gym 5 days a week for an our work out and 20 in swim. I cleaned my house, my aunties and also helped my parents with theirs. Now I can’t care for my children and have such a poor quality of life at the moment.

As for the depression well yes I have had that (awful fro 2 years) and to be honest with you I have been both hyper and hypo and I think that they both carry their risks for depression or just plain crazinesss.

sorry not much help but you are not alone. xx

[Ski]

#1072976

Sometimes the fluctuating levels can be just as damaging as outright hyperthyroidism ~ when you’ve been battling this long, you may find yourself far closer to the choice of RAI than you ever thought you would.

First, as mentioned before, RAI has no effect on future fertility. To the extent that an imbalance of levels could make it difficult to conceive, that’s a possibility, but it is not due to the RAI itself. Many, many patients have continued to have many beautiful, healthy children after RAI. In addition to that, studies done on those children actually show a tiny bit LESS disease than other children. Tiny bit.

You do have the choice of surgery, whether or not your doctor would make that the first choice. The choice is YOURS, and it really ends up being what you’re most comfortable with. Either RAI or surgery will accomplish the same goal.

If you pursue RAI, my personal advice is to make sure you have an ablative dose ~ one that will completely destroy your thyroid. It makes the outcome far more similar to that of surgery, with less waiting time until you are headed back to normal levels.

Being hypo does not have to go on for long ~ if you are vigilant and have an open order for lab tests, you can catch it early and keep yourself from sinking very low. You’re wise to consider it as another source of depression, and you’re also wise to begin a course of antidepressants that may help you stay afloat until you hit (and stay at) a good, normal hormone level.

[withoutabox]

#1072977

Thank you all for your replies.
I have decided to do more research until I am completely comfortable with the decision.
Thanks again!

[daleesai72]

#1072978

My endo is pushing me for RAI. I say lets try ATD before RAI. So far Im taking PTU for a month and my blood works will be taken next month. I heard its easier to treat hypothyroid if you hv it naturally. Its hard to treat hypo after RAI. You will be lethargic, gain a lot of weight even you hv no appetite to eat, depression. Thats why Im postponing RAI, because of symptoms of hypo. And I am stay at home mom with 2 very young kids.

[Ski]

#1072979

I don’t know that there is empirical evidence to say that it’s more difficult to find normal levels of thyroid hormone after RAI. Perhaps in some cases, where RAI does not completely ablate the thyroid, it could be difficult because the thyroid still has some functioning tissue, which can react to antibody action, and also will continue to fail, so you’re more likely chasing a moving target. I had a relatively easy time finding normal after my ablative RAI. I have not gained weight, have not experienced lethargy, have not had continuing difficulty.

[DianneW]

#1072980

There seem to be two groups of patients, one that adjusts well and has no problems and the other that has continuing problems. Both sets of experiences are real. My personal guess is that as Ski said this is possibly a matter of whether thyroid tissue remains for a particular patient and therefore can still continue to fail or fluctuate because of the antibodies.

This is a difficult decision to make, no doubt. I second the motion that if you decide on RAI, you have a high dose so that you can avoid fluctuations, getting the thyroid inactivated quickly and giving yourself the opportunity to rapidly establish the proper replacement dose, as if you had done a thyroidectomy.

While there isn’t a problem with fertility for RAI patients, you should know that all radiation causes small changes to DNA, which is one of the reasons all medical and diagnostic radiation is kept to a minimum. It takes a lot of these changes (mutations) to cause an actual birth defect. Since most mutations are recessive, they aren’t likely to show up as birth defects, as it usually takes two pieces of defective genetic material on the same gene (one from each parent) to cause harm that shows up in the child. Since both parents aren’t having RAI, it’s not a problem. But with a world that’s continually exposing people to radiation from one source or another, if we didn’t use some discretion about limiting radiation exposure, eventually we’d be seeing more and more birth defects. So it’s an entirely individual decision for each patient whether the safety of RAI for the patient vs. having a thyroidectomy is worth adding some tiny mutations in DNA to the gene pool.

Long-term studies done on RAI patients have shown that they do very well. There’s a slightly increased risk of mortality, which is mostly in the year right around treatment, so the mortality isn’t from the RAI but from the hyperthyroidism. Total cancer rates are slightly reduced compared to age-matched controls, surprisingly. Within these numbers, there are in some studies slightly increased risks of cancer of the thyroid and small intestine. (Other studies don’t find this, but that was one of the largest studies.) However, total thyroid ablation would eliminate the thyroid cancer risk, and it was uncertain whether the small bowel cancer was related to the RAI or to something about hyperthyroidism itself.

If we haven’t covered any of your concerns, please let us know. You aren’t alone with this. This board is what helped me through my hardest times 13 years ago, and we can be here for you now.

[daleesai72]

#1072981

Im still afraid of choosing ablation for my hyperthyroidism. But I know time will come I hv to do RAI, Im just not ready for it. Maybe bc Im afraid of gaining weight(I never been fat in my life, even when I was pregnant) Im afraid I’ll be bringing my kids to school, I’ll befalling asleep in the car, etc. I just wish I will know what is the right dose for my ablation, that I wont go hypothyroid maybe not until Im 50 y/o. That would be a miracle, right?

[belldandy112]

#1072982

daleesai72 — I am terrified of that quality of life, too. I had a taste of hypothyroidism when I was first being treated for Graves … I went extremely hypo because my dose was too high, and let me tell you, Graves symptoms were a walk in the park compared to that. I felt like I’d been shot through the eyes with an elephant dart and literally could not remember about that month. Luckily, my husband was working at the time and I was able to take a leave of absence. There is no way I could have worked in that condition. Even when my Graves symptoms were the worst, I was holding down a high-pressure research job.

Now that I’m divorced, I have to be able to work. S.S.I. payments just aren’t going to cut it, and I’m not even sure that I would qualify if I elected to have a procedure that disabled me to begin with. For me, it’s just too big of a risk to take.

[DianneW]

#1072983

daleesai72,

Doctors tried for years to figure out a dose that would make patients euthyroid (normal thyroid levels) with RAI. That’s what they were aiming for with me. Studies have shown that this very seldom is successful, and even when they do manage to achieve it, it only lasts for a short time. Eventually most patients become hypothyroid regardless of which dose they were given and what the initial response was. So for that reason, most doctors now are giving an ablative dose at the beginning. That avoids months or possibly years of fluctuating levels. This is what causes patients most of the problem anyway.

It’s NOT necessarily inevitable that you will have to have RAI in the future, as you seem to think. If you choose to you can stay on antithyroid drugs indefinitely, as long as you’re able to control your levels with a low dose and that’s what you want to do. Read about how this is done in James’ post.

RAI is an option if you choose it, and so are antithyroid drugs. It’s all what you are comfortable with.

So don’t let your thoughts about what you HAVE to do add to your stress levels. The choice should be yours.

By the way, you’ll be 50 before you know it. Time passes very quickly. You’ll care just as much then about whether you’re hypo or not.

[daleesai72]

#1072984

DianneW wrote:daleesai72,

Doctors tried for years to figure out a dose that would make patients euthyroid (normal thyroid levels) with RAI. That’s what they were aiming for with me. Studies have shown that this very seldom is successful, and even when they do manage to achieve it, it only lasts for a short time. Eventually most patients become hypothyroid regardless of which dose they were given and what the initial response was. So for that reason, most doctors now are giving an ablative dose at the beginning. That avoids months or possibly years of fluctuating levels. This is what causes patients most of the problem anyway.

It’s NOT necessarily inevitable that you will have to have RAI in the future, as you seem to think. If you choose to you can stay on antithyroid drugs indefinitely, as long as you’re able to control your levels with a low dose and that’s what you want to do. Read about how this is done in James’ post.

RAI is an option if you choose it, and so are antithyroid drugs. It’s all what you are comfortable with.

So don’t let your thoughts about what you HAVE to do add to your stress levels. The choice should be yours.

By the way, you’ll be 50 before you know it. Time passes very quickly. You’ll care just as much then about whether you’re hypo or not.

Thank you so much DianneW. I checked on James and hes great in explaining things, same thing with Sabinaa. I decided to stay on PTU and I hope it will work for me. I’d been taking this pill for a month now, my Endo trying to scare me I might be allergc to it just like Methimazole or I might get vasculitis. All medication has there reaction to it and it is all different to every person, thats what I told my Endo, she just doesnt want me to take ATD, just want me to go for RAI. Im thinking of changing my Endo for the 3rd time. Does anybody knows any good Endo right at Nassau County, NY?

[DianneW]

#1072985

I’m sorry your endo is trying to scare you. They do see the serious side effects occasionally and I’m sure when it happens it sticks in their minds. The risk of it happening to you is low, although your endo is correct in saying that RAI is the safer choice. As long as you are aware of the risks and are making an informed choice, the choice is yours to make. Vasculitis is a serious problem, but VERY rare.

You might indeed be happier with an endo that’s more supportive of your choice. I hope someone can help refer you to someone in your county (Nassau county, NY).

[MathTeach1]

#1072986

I can’t speak to the never-ending cycle with ATDs, because I chose RAI after just six months or so with a diagnosis of Graves. (I think I’ve lived with the disease longer than that.)

I’m now nearly four months post RAI, and while I still don’t feel like I did before last spring, I feel infinitely better than I did last summer. At the end of May, 2008, I had a resting heart rate of ~ 120, my blood pressure (despite medication) was 165 over something, and I was tripping and falling right and left. Talk about brain fog – I couldn’t remember my address when ordering a pizza, and we’ve lived in this particular house for six years. Our countertop was littered with post-it notes, as that was the only way I could keep track of anything. I couldn’t trust myself to pick up a pot of spaghetti from the stove and walk four feet to the sink to drain it. I would walk up the stairs to put our daughter to bed, and I was so out of breath that I couldn’t read to her. We had a new miniature schnauzer pup, and while I tried to work with her in a puppy class, I just didn’t have the strength or energy – I literally could not get up off of the floor by myself when we were doing exercises together. I got dizzy trying to unload the dishwasher from the up and down motion.

The beginning of this school year was horrible, and I’m very thankful that I have an understanding administration. I could barely make it through the day and ended up sitting next to my overhead most class periods. I fell on the stairs – hard – three times in the first two weeks. I fell asleep at my desk during the announcement period, because I was so physically exhausted. I thought I was going to have to quit after having taught for 24 years.

The RAI procedure itself was very easy, and my husband and daughter (age 10) survived just fine for the five days of isolation. My students managed to muddle through with a sub. I’m still waiting for the dust to settle, and I’m still taking my beta blocker, but life is better. I didn’t make the decision lightly. Graves had taken over my life, and I wanted my life back.

Take your time, see how you react to the medication, then see how your life is impacted by the disease. You may be able to live your life fully with the meds, as a friend of mine has, or you may decide to go another route. There is no "best" answer, as each of us has to decide what works for us.

Charisse

[mamabear]

#1072987

Withoutabox,
I just reread your first post and only now realized what you are saying. Forgive me it takes a few tries at reading something to get the comprehension. lol
You asked for support/stories… well I was looking for something I wrote a while back but couldn’t find it so I am going to type something similar to you and hope that this helps.
Just a note to the Mods/Facilitators in case I um say a word I shouldn’t..ya know just in case I slip. ” title=”Wink” /> <—trying to make everyone laugh!!!

I will TRY to keep this short and to the point, but that never happens so get your tea ready before sitting for this post.

I’m 35 right now.
Active kid, dealt with a lot of stuff during childhood(stepfather and mom fighting all the time…longer story but I will save you from all the details).

Athletic in High School and very very hyper. Always bouncing around and giddy. Naturally everyone laughed because I was blond so they said well she was a ditz. Eh oh well I guess I could have been called worse. People knew me as being a beast(Thin but built due to lifting weights).

Senior year I was my heaviest weight but still thin and very muscular. Going through stuff at home still
At about 18 yrs old mom made me go to Gyno for a thyroid checkup because she said I must be hyper. Bloods were normal.
Got married at 19 and got pregnant at 20, baby at 21(1995). By the time baby was 7months old I left my then husband.
1996 Met an old flame and dated him(ex and I were dealing with lawyer nonsense then finally we sat down and worked out things we wanted and told the lawyers and are friends now).
Boring things in between this part…Skip to 2000 Boyfriend and I decide to have children so we get married in summer of 2000.

Nov 2000 I wind up with the Flu (we have come to find that that is what my trigger was and caused the Graves’ disease to come out and say hello).

By Feb 2001 I went to dr. and found out my TSH was 0.03, went to and Endo who said RAI asap since I wanted to have a baby.
DH and I went to the Radiologist who said don’t do it, look at other options.

So we did and told the Endo no I wasn’t going to do this and that he should treat me with PTU since my sister was currently pregnant with her #2 and I had son and didn’t want to be away from anyone. Endo said NO. So we said goodbye to him. ” title=”Very Happy” />

I found another dr. who was a single dr. in his own practice and said that my Graves at this moment was mild and to try PTU, he didn’t guarantee anything though and said it could take months to get TSH to be normal. I said fine and started taking the PTU in July 01′. During this time I was seeing an RE(Reproductive Endocrinologist) who knew I was trying for a baby but was giving us a run a round about things.

By Oct 01′ I was within normal range. Dr. was pleased that it only took a few months to achieve it so we were waiting for RE to say go for it. Well he turned out to be a jerk and dh and I had a few words with him.

Jan 02′ we saw another RE she was great she tested me to find that due to Low TSH wasn’t able to conceive on my own. My eggs were poor(estrogen levels were bad during ovulation). We tried with some medicine to see if that would help but it didn’t the next month we did along with another procedure and that worked. She put me on progesterone to help not miscarry as well since this was an assisted pregnancy she didn’t want to take a risk of m/c.
My regular Endo was thrilled and by the time i was 3 months pregnant my levels were going to high and he took me off the PTU for fear of a miscarriage. I did fine without it because the pregnancy helped keep me at my levels. Had baby in beginning of 03′.

Then we thought it would take a long time to get pregnant again so when baby was 5months old we started to try again with the RE (yes I was still in "remission") and got pregnant when #2 was 10months old. Stuff went on in between but again not boring anyone with details. It was hard to do but we got where we wanted to be.
Had #3 Summer of 04′ and it was great.

12/31/04 for News Years eve we went to family’s house for a party and #2 (he was only 22months old at the time) wound up getting Rotavirus and so did I. Let me tell you that was not fun at all. 6 weeks later I felt "funny" and wound up having the startings of a Thyroid Storm. Saw dr. in Feb 05′ and she said get to endo right away but since I was on a different insurance company and my great Endo retired I had to find another one. I did and I hated him. He said "she is fine" and my general dr. said no she isn’t her tsh is 0.01 and her T4 and T3 are out of control. Treat her now! (my general dr’s are russian and indian and they are no nonsense dr’s it was awesome to see them in action).
Well he treated me with PTU but you could see he didn’t want to. What a jerk.

Was on PTU for a few months and levels were great so went off medicine during which time I tried a different dr. and OMG he was worse. But I got off the PTU and 7months later my levels were still great and I only needed to have my general dr. check me with no Endo involoved at that point. UNTIL……….. I wound up pregnant on my own with no help from the RE!!! It was wonderful to know that my body was healing and I could do this on my own. But we had #1,#2,#3 who was a terror child and well since I was pregnant my general dr. said I had to have an Endo’s care just in case I go out of remission during this pregnancy. I was mad because I knew my ins. would only take that jerk I didn’t like in the first place that put me on the PTU but didn’t want to. Crap crap crap…
Ok so I saw him and with no complications during my pregnancy I didn’t have to deal with him and his nonsense. All was well and baby arrived summer of 06′.

She was a peach and at the end of Nov 06′ I wound up sick with a virus and by Feb 07′ I felt "funny" again and went to him and my TSH level was just borderline and I felt it. I said my body likes it when I am above 1.0 but he said that I shoudl go on Tapazole and that at my age I shouldn’t have anymore kids because I already had 4 and blah blah blah…well needless to say I told him to go ya know…(enter bad things here lol).

I went on a search to find the Retired dr. that I had gone to that I loved, i knew he had had a colleague, so I found her and she was in practice with another woman who I wound up seeing. Now during my waiting time to see her I dosed myself with low dose PTU (my general dr. knew this) and hoped for the best. Since it was only the TSH that was off this time we did what the original dr. did (the dr. I think is great), so we took his dose and used that for now till I was able to get to my appt.. By the time my appt. came I told her what happened and that there was no way I would go to that dr. again and that I had hoped that she would understand that she woulnd’t be making a lot of money off of me but had hoped that she was in the business for the right reasons. She was like the dose seems fine and after she checked my blood work I was within range and not feeling any funny stuff at all. This was in april that it showed fine. by May I went off of the meds and by june she said i was still fine and check again in 8 weeks. I was normal and have been ever since.

People can go in and out of remissions with complications or without complications. I know the risks and so does my dh and we both agree that right now this is the best course of action for me. Had I not taken the meds well or not stay in remissions for long periods of time I might think differently but this is what is best for me since I can stay in remission for 5-10 more years without having to deal with PTU. OR maybe I wont be that lucky but I would personally rather deal with this then go through RAI and have to deal with HYpo.
If and when I have to do RAI or something else then I’ll deal with it or if my body goes into Hypo by itself then I’ll deal with that then too.

I call myself one of the lucky ones because although I went through the whole infertile for a time, hair falling out, feeling of anger and depression and being sick.
In a nutshell , our hormones during our mensus sucks. It’s bad enough that we have to deal with feeling fat and bloated and we have cramps and people wont leave us alone and or shut the hell up THEN add that we have Graves’ to the mix all of that equals the "crazies" is what we call them in our house.

Anytime you feel like you are loosing it call a friend or family member, call your dr. if you have. Sometimes just letting it and screaming into a pillow helps too. Vent here if you need to.

I hope this helps you to know that there are people out there that have taken PTU and aren’t on it anymore(right now) and are still in remission and doing well. And I am willing to stay this way until it no longer works for me.

Prayers

[Author]

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