[Kimberly]

#1068141

Hello – Others here can address your RAI questions. Unfortunately, doing nothing is NOT an option, as being hyperthyroid over the long haul can cause complications such as heart issues and reduced bone density.

I have found that with ATDs, I have to be an *active* participant in dosing decisions. There have been two occasions over the last two years where I have argued with the endo over dosing — and we ended up "compromising" on a reduced dose. Both times, my subsequent labs proved that I was right…and I would have ended up hypO if I had blindly followed the doctor’s advice.

I don’t know how much flexibility you have with the system in Canada. If your current endo is one of those with a "god complex" who refuses to listen to patients, can you find another one?

Best of luck!

[hockey]

#1068142

Thanks for the reply Kimberly,

I guess I know that I really should not be letting it go – it’s just that my endo is a brutal listener. Another dr. I had told me the endo dr. is a walking encyclopedia with the personality of a snail – much agreed with. He doesn’t listen, and he seems to think that TSH levels are the end-all, be-all rather than how I am actually feeling. As for finding another – not sure how that would work. It takes weeks to see my gp and any other endo would be 1+ hours away. So far my endo has been great for fitting me into his schedule, just if he would listen!

The only routes to treatment that I have are either surgery (going under scares me) or RAI as I am allergic to ATDs. I also don’t like the idea of having to take the replacement for the rest of my life. I am AWFUL at taking pills (vitamins are a chore), and it will be even worse if I need to take the meds at the same time each day and on an empty stomach since it never seems to be empty.

Remembering back, it seems as though my thyroid problems started when I came off the pill. Any thoughts out there as to what the outcome would be if I went back on the pill – at least that’s reversible. Thanks again.

[Kimberly]

#1068143

hockey wrote: He doesn’t listen, and he seems to think that TSH levels are the end-all, be-all rather than how I am actually feeling.

Remembering back, it seems as though my thyroid problems started when I came off the pill. Any thoughts out there as to what the outcome would be if I went back on the pill – at least that’s reversible. Thanks again.

Ah, if your doctor is determining dosage solely based on TSH, no wonder you keep having issues headed into HypO territory! Are you able to get Free T3 and Free T4 tested as well? That is really the best measure of or levels, since TSH can remain supressed for long periods in Graves patients.

As for the pill, I was on it prior to my diagnosis, so I don’t think that makes a difference in terms of getting Graves. However, I have heard that being on the pill can serve to "bind" or inactivate thyroid hormone…which could potentially cause our *free* hormone levels to increase.

Hope this helps!

[hockey]

#1018964

Hi,

I’m new to this website – and blogging/posting too! (due to inexperience, I put this as a reply, when maybe it really should have been a new topic).

Here’s my problem – I was diagnosed with Graves 5.5 yrs ago when I first found out I was pregnant. I went on PTU for a bit, then came off as my thyroid regulated itself during pregnancy. When my son was 4 mths old, I had to go back on PTU. I was on the ATD for aprx. 5 mths, then got severe joint pain – I couldn’t move, I felt like I was 100 years old, and was sooooo tired all the time. I told my endo about it, and he totally dismissed it. I then went through x-rays with my gp on all my major joints to see if it was osteoarthritis which it was not. I ended up taking myself off ATDs and the pain went away. I was mildly overactive, but got pregnant without problems for baby#2, again thyroid went into remission for pregnancy but it didn’t last. I have been overactive for almost 3 years now. My husband is very anxious that I do something as I have been moody (feels like I have PMS quite often) and seem to lack patience. My endo has been pushing RAI ever since I’ve had my children, but since I was breastfeeding, I was able to delay it. I have been thinkging of doing RAI, but I have seen so many negative posts about it, that I’m scared to do it – especially since it is a one-time thing, no going back – AND – my endo didn’t listen to my complaints the first time when I was on ATD and felt like I was going hypo (T4 was 12 & T3 was 2.9 – Canadian #s) plus the joint pain. I feel that he’s going to make me sooo hypo again that I will not have any energy to do things with my children, or for me to be active. I also don’t want to have to be away from my family after taking the RAI and fear jokes from some people that I am a green monster/freak for being radioactive, in addition to setting off alarms at the border or airport should I decide to travel. Any suggestions from people who have been there, done that? Or, someone who is also just waiting it out to see what happens? Thanks!

[npatterson]

#1068144

Dear Hockey,

Kimberly is right–doing nothing is NOT an option. Being hyper takes a huge toll on our hearts and bones. I will send you a comparison of the 3 treatments if you will write to me "nancyngdf@bellsouth.net"

RAI and Surgery are both good options. You will not glow in the dark, nor set off geiger counters!

You will surely hear from others.

Take care,

[Marpo]

#1068145

I was where you are at one point years ago. I am very bad with taking pills and surgery is something I have to be dragged to. So that did just leave me with RAI. I just had to take one large pill and rest up for a few days after. I never did feel sick , turn green and did not travel that week end.

I do take a pill everyday and will for the rest of my life. I take my pill before bed as part of my nightly routine. I brush my teeth then take a pill since the glass of water is already in my hand , I am half way there. My daughter use to put a big sign on the wall "TAKE YOUR PILL". It worked. Oh, I don’t need the sign any more.

[hockey]

#1068146

What made you decide to go ahead and do the RAI?

I don’t feel that bad right now … yes, I probably get winded faster than I should, but – it hasn’t really slowed me down. As for being moody – I have always been a bit moody, guess I just hid it better from my husband than I have been of late.

How do you go about telling your kids (2 & 4) that mom isn’t going to be home for 7-10 days because of RAI without scaring them? My aunt’s dog just died and I told the kids it’s because he was old & sick – will they think the same is going to happen to me? What do I do with all that time, I’m going to go stir crazy being alone = plus I can’t DO anything/go anywhere (ie. shopping) due to radioactivit exposure. I have NEVER been away from my kids – with the exception of when I was in the hospital for the birth of my 2nd. My friends may say that ‘wow, you get a break from the kids, how great!’ – well, it’s not great – it SUCKS and I would prefer to hide the reason why I’m away from others. I don’t want them to be concerned about the health/radioactive exposure of their kids when they are around me when I need to help out at nursery school and host my kids bday parties.

Also- how do you go about telling your family so that they aren’t worried. My doctor has said about the RAI ‘its no big deal’ … but to ME it’s a HUGE deal – being away from my family (and alone post-treatment), having to take supplements for the REST OF MY LIFE.

The problem with taking the supplement, is that it will need to be out of reach from the kids – and for me, when it’s out of reach/sight, it’s out of mind. I don’t want to be like my 80+ yr old grandfather who has flourescent signs posted all over his room reminding him to put his hearing aids in. Plus – they always say not to keep medicine in the bathroom, so, if I followed that, taking it at bedtime when brushing my teeth really wouldn’t work.

My husband’s biggest goal of me doing the RAI is so that I am: happier, more positive and less angry …. will RAI fix that, or just make it worse .. if the RAI doesn’t work, or I do feel worse – I will be blaming HIM and we will most likely end up going down the same path our parents went (divorce) and I don’t want that for my kids … I have always felt like the odd person out for everything – having Graves seems to just keep that ball rolling.

any thoughts?

p.s. I know that I may be a bit cautious – but, as my dr. put it – there is no data on exposure effect on kids < 5 to radioactivity. So – when I am around this age group ALL the time, I will take NO chances, and from what I’ve read 7-10 days is needed.

[ewmb]

#1068147

Hockey,
Where do you live? Here in the States the usual time away from people, while being the same house, is between 2-5 days depending on your dose of RAI. I don’t think that RAI for Graves disease treatment is usually a large enough amount to keep you away from home. There are precautions but only for a few days. No sharing dishes, beds, holding small children close to your throat for any extended length of time, flushing the toilet twice etc.. You may have been reading about Radiation for thyroid cancer that is at a much higher level. Talk to your endocrinologist to see if you can talk to a nuclear medicine person if you have questions. There are some great posts here in the archive about what taking RAI really means as far as being on restrictions. It’s not as bad as you seem to think. That said you have to make your own decision about the three choices for treatment, surgery, RAI and drug therapy. My RAI was my choice after drug therapy didn’t really work for me. My kids were teenagers so I didn’t have the holding them issues. I had it about 4 and half months ago and have started my replacement hormone in the past two weeks. It is hard to live with Graves but you can come to peace with your treatment no matter what it is you need to start to get things under control if they are not.

Good luck with your decision.

ewmb

[hockey]

#1068148

Thanks for the wishes of good luck … I’m going to need it whatever I choose.

I’m going on the more cautious side of 10 days (Canadian & American websites have shown 7-10 days) because my kids don’t need any more chance of developing thyroid problems – seeing as how there is some genetic component, not sure what exactly, but it is there because of me and my father-in-law – they don’t need any more reasons (exposure to my RAI) to increase their risk of thyroid problems.

It’s also not really possible to say to a child – sorry, I can’t read to you, snuggle with you, hug/kiss you etc. so it would be easier to just not be around instead of rushing back after day 4.

[hockey]

#1068149

what if you have a gut feel that none of the treatment options are right for you … refuse surgery, fear of RAI & allergic to ATDs? I guess either way you can always second guess yourself in the long run – oh, I should have .. but, by choosing RAI or surgery there is no going back, they are permanent, and the only ‘temporary’ option has been ruled out due to allergies.

gut feel is that:
– it won’t work
– supplementation will be a HUGE hassle with having to taken on empty stomach or that I will not be able to tolerate it – there are risk factors to the supplements same as there are risks with not treating graves and I HATE taking pills – now I will be stuck with taking one for the rest of my life
– by taking RAI you’re not really treating graves only its symptoms
– my dr. won’t work with me to find ‘my’ normal
– something is going to happen post-RAI (complications – thyroid storm, heart attack)?
– fear that I’m going to accidentally expose someone to radiation (even though I am going to be alone for 10 days) and that a higher dose of RAI (15-18mci) is going to make me more radioactive, and for longer
– that I’m going to gain a TON of weight so that instead of having graves side effects to worry about, there will then be a whole hose of new problems – obesity, diabetes, joint & mobility problems
– the hassle of weekly blood tests (as ordered by my dr) – gee, I’m going to look like a druggie soon with all the holes from blood draws.

sorry – I’m just scared and bitter.

[LaurelM]

#1068150

Hi Hockey,

Yeah. Graves sucks. None of the treatment options are risk free. I understand the small children issue as I have a 2 & 4 year old. For me, the possibilities of untreated GD (permanent heart damage, crumbling bones, even death) were much scarier than the much much statistically smaller possible risks of any of the treatments.

You mention that you had issues with PTU. Have you tried the other ATD Methimazole? Sometimes people tolerate one of the ATDs better than the other. Also, the symptoms you describe could have been based on the size of your dose. Did they try reducing your dose to see if the side effects could be reduced and still maintain an acceptable thyroid level? It is common to be started on a fairly high dose and then to be able to taper down in a couple of months to a much smaller maintenence dose.
A possibilty of remission also exists with the ATDs. Remission usually takes 1-2 years to acheive – and may not last. There are many many people who opt to use a low dose of ATD to long term control (years and years) and it is working very well for them.

Sugery is another valid choice. Usually people are out of the hospital in only one to two days and your children can come visit. This was probably my 2nd choice option.

I had a friend who had thyroid cancer and got to experience both a surgical thyroidectomy and a very high dose of RAI. Based on discussions with her on her experiences I was less anxious about both of those a possibilities. As my children get older, I seem more willing to consider this option.

What your children need most is to have a healthy mother around for a long long time. Please don’t let fear (and Graves makes us extra anxious over stuff), rob you and them of that.

Laurel

[elf]

#1068151

To put things in perspective, thyroid cancer patients (thyroid cancer is one of the easier treatable) go on and live their lives with healthy life span after taking RAI in dosages of 600 – 1000 mci.

In addition, in the latest wake of news of people dying of/with lupus (Lucy Vodden, Michael Jackson), another auto-immune disease, I am grateful that all I have is Graves.

[psychmom]

#1068152

I realize that I have probably not done the right thing but I have been doing nothing about my Graves for over a year. I don’t feel as symptomatic as I did, ie. tremors, racing heart, anxiety, High blood pressure but I am sure I still have Graves. The problem is that I feel better without the medication (I took Tapazole) than I did taking it. I know I need to go back to my endo. but I was hoping things would resolve on their own. I don’t advise anyone to do as I did but I need to feel good enough to function in my very busy life. I am going for blood work next week so I will let you all know how things are going.

[Ski]

#1068153

Hyperthyroidism is truly insidious ~ while it’s coming on, we just feel more and more active, as if we can accomplish anything, and then the bolts start to come off the truck, so to speak. The problem is that sometimes it’s really, really subtle, so we believe there’s nothing happening. The truth is that excess thyroid hormone is like sitting your car in the driveway, turning it on and leaving a brick on the accelerator. It’ll appear as though it’s running perfectly ~ for a while. Ultimately the stress on every part of the engine will start to take its toll, and you never know where it’ll appear first. Are the spark plugs weaker than the hoses, or will the radiator fail first? When we have excess thyroid hormone in our body, it is ravaging every cell in the body, because it is literally the fuel used for every cell in the body to function, and it’s overdoing it everywhere. The damage that does can be tough to see, and it may not even show up for years, in a form someone can quantify, but it’s FAR better to not have the damage occur at all.

There are, separately, several effects that occur when we’re hyperthyroid. The muscle wasting is one example ~ hyperthyroidism accelerates muscle destruction, and suppresses muscle creation, so we lose muscle mass in all our large muscles (upper legs, upper arms, chest). Remember, your heart is a muscle, so it is also susceptible to this muscle wasting, and that’s something that may or may not be fixable. Calcium is leached from our bones, and osteopenia or osteoporosis are a common result.

All this while we THINK we feel pretty well, because the changes have come on so slowly. It’s the "frog in a pot of water" allegory ~ when the temperature is turned up just a little at a time, we never recognize we’re being boiled.

I felt awful on Tapazole too, so I know what you’re talking about. The issue is that the next statement cannot be "okay, I just won’t do anything, I don’t like the other options." You NEED to be well, for yourself and for everyone who loves you. SOMETHING must be done to correct the problem, or you risk far more difficulty than you’ve had so far. So get to know the other options and come up with the one you are most comfortable with. You need to have normal thyroid hormone levels, or you will not be well, today or tomorrow or next month. The body does not just "get over" this on its own.

I had a period of time when I was subclinically hyperthyroid (my T4 read inside the normal level, but my TSH remained suppressed for nearly a year), and I was doing the same thing ~ I feel fine, my T4 is okay, I’m sure it’s just some weird anomaly ~ but once I recognized it as a problem (which it was), pursued further treatment (a second RAI, VERY RARE, do not worry that it will be necessary for you), and finally regained healthy, balanced thyroid hormone levels, I began to realize how unwell I was all that time. In some cases it’s only in retrospect that you’ll see how ill you really are when the levels are unbalanced, but believe me, it’s true.

[psychmom]

#1068154

Thanks Ski, I know in my heart that I’ve been playing with fire. I see my primary care in a few weeks so my blood work will tell the story. It takes months to get an appointment with my endo so I guess I better call right now. Thanks again
Barb

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