[elf]

#1072946

bentoboy – hopefully parents with kids or our mods will reply.

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[Ski]

#1072947

There is at least one parent posting here who has been through a similar circumstance ~ Amy’s son was diagnosed a few years ago, and they’ve been battling with his levels ever since. He is a little bit older than your daughter (in his teens now), but they recently made the decision to go ahead with RAI, and he was treated a couple of weeks ago. I’m sure she’ll be checking in and will respond.

This is one of those situations in which we find ourselves as parents occasionally, where it seems we have no choices we LIKE. You’ve obviously already been through a lot with this condition, and so has your daughter. RAI will not affect her future chances of getting cancer, will not affect her future fertility, if that helps. The doses we take, as GD patients, are about 1/10 what a thyroid cancer patient would get as treatment, and even that is considered therapeutic, not harmful in and of itself. Still, if you prefer, surgery IS an option you could pursue. Again, no GREAT choices for you. Still, getting your daughter closer to health is extremely important, and as you say, it’s a good idea to get this treatment behind her before puberty hits, because then you could be in for really dramatic highs/lows.

How are you feeling about this? Have you discussed the circumstances with your daughter, at a level she can understand?

[elf]

#1019628

by bentoboy on Tue Mar 10, 2009 4:09 am

Hi, I have just joined and want to post a new topic regarding radioactive iodine treatment of my daughter, to this effect:- We are at the stage of needing to make the decision to irradiate our daughters thyroid gland. She has had the condition since the age of five and has been in remission three times. As she has an aggressive presentation of Graves disease, the specialist is recommending irradiation now, before she enters puberty, and all the other issues associated with it.
My plea and mission is to find other parents who have found themselves in this situation. Thoughts? Results? Ideas? Recommendations? It is a crying shame to have to take such a major and irreversible decision, but I am not happy for her to go on taking the neomercazle (Australian brand name for Carb..) I would very much appreciate some feedback. Thanks.
How do I create a new topic?
Or might this just kick things off.
Many thanks from sunny Australia…bentoboy

Posts: 1
Joined: Tue Mar 10, 2009 4:02 am
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[bentoboy]

#1072948

Thnakyou for your replies and your interest, Ski. Amy and I have now had some emails. This seems to be a very active site! And also very helpful. The angle that I am coming from is that I was grossly overactive with Graves and finally diagnosed when I was brestfeeding my second child. I had 24 hours to wean her and was put on a dose of 6 neomercazole a day. I was able to moniter how I felt and eventually reduced the dosage to nil and remained at normal levels. My aim was to have third and last child:- Lily. I was monitored during pregnancy and all was good, but she presented as over active at birth. That soon stabilized and it was only when she was five years old that the signs of overactivity in her were manifest ie heart rate of 120 at rest etc. So she began with medication, which was swapped to PTU when she was admitted to hospital with a susspected thyroid storm incident. She has just turned ten years and is in remission again. Back on Neomercazole at a dosage of one tablet morning and night. She has been stable since september last year. So in her present state it seems htat she needs these meds to stay relatively normal. This is her third timein remission, if you include her incident at birth.
So the reason for my trying to make contact with others who have been through this is that I know how revolting the medication is. We have been advised that RAI is the most sensible way to go. In Australia, with children, they would irradiate the entire gland so as to avoid cancerous growths. Also, I am not comfortable with surgery as there is risk of nicking para-thyroid glands etc. Taking a tablet is a far less invasive method. So we have come to the cross roads of whether to once again try to reduce the medication to see if she goes into remission again and hopefully stays that way forever. I realise that we would run the risk of it recurring at an inopportune time:- pregnancy, times of stress etc.
I have been told that she will become under active and have to take synthetic thyroxine for life. That is of course better than what she is taking now.
You mentioned that there are no issues with fertility. Are there any other events that may result from RAI? These are the concerns that my husband and I have. Will she be under more physical strain, normal growth etc.
Our endocronologist, who is sensational, is advising we have RAI now, while she is very stable and easier to treat. I suppose I have felt a bit cornered as he has advised that he is on sabbatical for a year as of 1st July 2009. I would definately prefer him to moniter her reactions and be there on hand to give advice. Thankyou for your time, it is much appreciated. Also we have discussed with her and she is ready and willing to have RAI. I am hoping that it is not only the novelty value of being isolated. She does understand the implications of lifelong thyroxine and blood testing. Just wondering if there is anything else we should know? Irene

[Ski]

#1072949

It sounds as though, with your experience and her doctor’s advice, you’re getting all the best possible information. The only comment I would make is that it is an option to continue having her take that small dose of ATD in order to keep her levels in check, but you know that too. Successive remissions are less and less likely (a smaller percentage of patients achieve remission in the second and third tries), but long term ATDs are a choice you could make, if you were interested in that. I completely understand the desire to treat prior to onset of puberty, however, you could perhaps wait until the doctor returns from sabbatical (a year, you say?) so that your daughter could be monitored by someone you really trust after the treatment. She’d be 11, so that’d still be ahead of the adolescent hormones raging, I think.

If RAI is your ultimate decision, I would definitely agree with the doctor that an ablative dose is best, for many reasons.

Lastly, in one study, done years ago (and never repeated successfully, FYI), about 16% of RAI patients had a "temporary worsening" of eye symptoms (neither term was clearly defined), but the eye disease is extremely rare in young patients, so I’d be surprised if she were having symptoms at all. It’s possible that she could experience a short period of "gritty eyes," but it doesn’t happen to everyone. Mine lasted about 60-90 days, I don’t recall exactly, but it was over fairly quickly. The potential for the worsening is removed if the patient takes a short course of steroids, but of course those carry their own potentially serious side effects, so a doctor will usually only prescribe them if the eye disease is already severe.

[amyl]

#1072950

Hi,
I was reading through all of these posts and I had a thought. You said that your daughter is currently in remission so that means she’s not dealing with any of the hyper symptoms. My son wasn’t in remission when he had RAI…he was hyper at that time. He’s having a really hard time dealing with all of the symptoms while waiting for the RAI to be effective. If your daughter could have RAI while she’s not exhibiting symptoms, she might have an easier time of going through the irradiation process. I also think it would be easier for her if she isn’t also dealing with the hormonal ups and downs of puberty. My son has been dealing with a lot of depression because of Graves.
Just something to think about ” title=”Smile” />
Keep in touch,
Amy

[bentoboy]

#1072951

Hi Amy, I think I may have given some misleading information. Lily is not in remission, she is stable on two tablets of neomecazole a day (one morning, one at night). So the advice you are giving supports what our doc is saying, but she is not actually in remission as such. I am very interested in side effects of RAI, both physical and emotional. Ski mentioned that ferility is not an issue. These are all the things we have too weigh up and depression is a huge one. We are reading alot of interesting information about childhoods Graves taking several years to stabilize. I just dont want to jump the gun and go through RAI, if it is not completely necessary. That said, the sooner we can take her off medication, the better. Cheers, Irene.

[amyl]

#1072952

Hi Irene!
We were told that Graves’ symptoms could become more intense a week or two after RAI. In my son’s case, that didn’t seem to happen although maybe that’s what causing his increased nausea right now.
Eye problems can occur post RAI but they should be short-lived. In my son’s case, two weeks prior to RAI, he developed pain in his head and eyes when he moved his eyes. That resolved itself prior to RAI but then returned a week after RAI. It hasn’t been a huge problem for him, it’s more of a nuisance and we were told that it wouldn’t last long. We were also told that children usually don’t have as much trouble with their eyes as adults have and that once the eye problems are resolved, they don’t return. Of course, not everybody has trouble with their eyes after RAI so your daughter may never experience that.
Depression has been a huge issue for my son. He has suffered from depression off and on over the last 3 years because: 1) this has been going on for so long and 2) he feels terrible all the time so it limits what he can do 3) he misses so much school and all of the socializing that goes along with that 4) he hated being isolated for 6 days after RAI. His depression has been so bad that he thinks about suicide. It’s very scary! I believe that once he feels better, the depression will go away.
We were told by a pediatric endo. from Mayo, that the younger a child is when they have RAI, the higher the risk of developing thyroid cancer. Now, we weren’t told that our son would get thyroid cancer if he had RAI, just that the risk was a little higher. In one of Ski’s posts, she said that there is no increased risk of cancer for children that have RAI so you might want to talk to your doctor about this discrepancy.
As far as medication is concerned, we decided that our son will be on medication whether he’s hyper or hypo and hypo is much easier to control. I developed hypothyroidism right after the birth of my son. My symptoms were EXHAUSTION, extremely dry skin, hair loss, constipation, and severe abdominal pains. My GP attributed all of these symptoms to just having a baby that I was nursing and it was winter time. Luckily my ob-gyn checked my thyroid and found out that all of the symptoms were caused by my thyroid. It took awhile for my doctor to get me up to the appropriate dose of Synthroid but once I got to that level, ALL of my symptoms disappeared. Over that past 6 months or so, my thyroid levels haven’t been stable so my doctor has been tinkering with my medication. I don’t notice any physical symptoms at all. When my levels are stable, I only have blood tests a few times a year. Right now, because my levels are changing, I’m having blood tests every 6 weeks. So, I just take 1 pill every morning and I never have any physical symptoms of hypothyroidism. My son was taking 2 pills a day and was dealing with every typical hyper symptom as well as this horrific nausea. So, I think he will be very happy when all of his symptoms go away forever and he will only take 1 small pill each morning. It’s worth the trade off.
I personally don’t think there are any long term side effects from RAI. Have you heard about anything specific?
Amy ” title=”Smile” />

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