[thompson91]

#1018477

Hello. I am new to this board and have just been dx with Graves. I’m 37 w/ 4 children and a husband whose trying to make sense of all this too. I started with symptoms last Aug of my hands shaking. In Feb of 09 I started birthcontrol to regular my periods. In April I joined a fitness program and lost 17lbs. In Aug things got stressful when my husband lost his job no fault of his own. The end of Aug is when I started to notice my hands shake. I thought of Parkinsons and never thought I’d be down this road. When they did the blood work in Sept they wanted me to do a thyroid scan which at the time I didnt know much about and said no. I finally went back for other blood work this April, then had an ultrasound which showed it enlarged (dont know what size it is to be) and nodules, and the thyroid scan which showed graves. My blood work was TSH 0.04, FREE T4 3.8, FREE T3 1314, THYROGOLB AB 33, AND THYMICROSOM AB 2054 (dont know what the last two are) Anyway I go to the dr tomorrow and am just uncertain what to do. First I would like to see a Endo dr. I did have one episode of racing heart and they put me on Metoprolo but I stopped due to my chest getting tight afterwards which never happened before. I’m not taking something that makes me feel worse. Anyway, I’m thinking about anithyroid meds since it helps the thyroid and not just the symptoms. I saw some go in remission with this. I’m also thinking if it comes down to RAI or surgery I would try to do partial surgery the outcome is the same and I’m not nuts about nuclear med. Any thoughts, ideas, encouragement, etc? Thanks. This looks like the most active group I’ve found. Also, does diet (certain foods etc) help with any of this?

[Ski]

#1065144

Hi and welcome ~ I know no one wanted to find themselves here, but here we are. ” title=”Very Happy” />

Diet can’t help your thyroid hormone levels, except that avoiding kelp/seaweed products is wise, because kelp is extremely high in iodine, which the body uses to make thyroid hormone, so it has a similar effect to pouring gasoline on a raging fire. Otherwise, food won’t make a difference in thyroid hormone levels. Eating healthier will always be a good thing, and it can help you feel the best you can.

ATDs can be a good way to get your thyroid hormone levels back to normal so that you can collect yourself and decide what your path may be if ATDs don’t end up working well for you. One thing you should know is that removing only part of the thyroid has not been proven a successful strategy in treatment. Any thyroid tissue that remains active has the potential to be "goaded" into excessive release of thyroid hormone by the Graves’ antibodies.

Still, for now, try to focus on the task at hand ~ I’m sure you aren’t feeling very well, and it may be quite a while before you regain yourself. Things happen slowly with thyroid disease, changes come gradually, so be patient, be gentle on yourself, and keep doing what you’re doing ~ learn all you can about GD and its treatments. It’s so important to your state of mind.

[thompson91]

#1065145

Ok, so I was at my family dr yesterday and he said its Graves and I should have RAI. I told him I’m not thrilled and what about surgery or patial. He said if I do that that I will be on meds the rest of my life and they dont do the surgery for Graves that much. I am going to an Endo just need to set the appt. I asked about being away from kids for 3 days he acted like you dont need to be, but I told him everything I read you do. (He knows I read up on this cause I was throwing alot out at him) Anyway, he said that there’s only a 5% chance a year you’ll become HYPO but it seems like everything I’m reading on here everyone who did RAI is already on synthroid, why? Is it not like he said? I dont know if anyone else knows there numbers but for my thryoid scan my 5 hr was 97% and my 24 hr was 87%, that sounds real bad to me but my symptoms are minimal. He said we could have caught this in time before it gets real bad. Can I say how bad this stinks!! He said if I just do the meds we could go 1 to 2 years and if it doesnt get better thats time lost and then it can cause heart damage. I hate the thought of that junk from RAI going into my body. My thought was ok, RAI have a "normal" life than not have to take snythroid for another 20 years. Ok, so how bad is RAI, what can anyone telll me, will my life be normal again?

[Bobbi]

#1065146

In answer to your questions about RAI and synthroid, I had RAI, about twelve years ago, and am healthy. Ski, too, had RAI. Twice in her case, because the first time the nuclear med doc didn’t give a strong enough dose, and she never stopped being hyper.

The radioactive isotope used in RAI has a very short life span, as radioactive materials go. It’s half life (the way these things are measured) is 8.1 days. In addition, it is extremely water soluble. And it ONLY is absorbed into the thyroid. These three aspects of it are important. Anything that is not absorbed into your thyroid is eliminated very quickly from the body via kidneys (urine), sweat and saliva. Drinking fluids in the first two days after RAI helps to eliminate any residual amounts of it even more quickly. What is left in your thyroid is half gone after 8.1 days. Nuclear scientists consider radiation "gone" after five half-lives. That means that there is so little of the substance left as to be meaningless. So, if that is the case, then for those of us who have RAI, after five half-lives (or 40 and a half days), the RAI is eliminated from our body completely.

As to synthroid. My reasoning about having to take synthroid (or something similar) for the rest of my life was this:

It is likely that we will have to be on some medication or other for the rest of our lives. Only 20-30% of people who go on the meds get a remission. Remission is, by definition, a "temporary" elimination of symptoms. It is not a cure. The hyperthyroid problem is going to come back at some point in time. And, remission, again by definition, is defined as being able to go off meds and have normal levels of thyroid for a year or more.

I looked at the side effect issues of the ATDs vs. the replacement hormone. Replacement hormone IS thyroid hormone. It is chemically identical to our body’s own T4. T4 is a prohormone — it cannot be used in cell metabolism unless it is converted to T3. So, I look at it as a "timed-release" T3. Anyway, all of the side effect issues listed in the drug manuals, with one exception, have to do with getting either too much of it (hyperthyroid symptoms) or too little of it (hypothyroid symptoms). The exception is that some folks are allergic to an inert ingredient that is used by the manufacturer to turn the chemical (levothyroxin) into pill form. Typically, it is an allergy to a food dye. There are replacement pills made without food dyes in them. One of the pill manufacturers uses lactose in it’s inert ingredients. Folks with a lactose intolerance might have to switch to a different brand. But other than that, taken in the proper dose, replacement hormone is easily used by the body without toxic side effects.

The issue with ATDs is somewhat different. There are potential harmful side effects from them, even if taken in the proper dose. These side effects are rare (less than 5%, I believe it is), but real. So, I decided to do RAI and take replacement hormone instead.

I do wish you good luck with your decision. Whatever you do, don’t put off treatment. Taking the ATDs initially is helpful, inasmuch as it starts to control your thyroid hormone levels, reducing the symptoms, and allowing you to think through your options. And, if your doctor wants you on a beta blocker (like the metropole) that is also a good idea. Having too much thyroid hormone is extremely hard on our hearts. Too much thyroid hormone makes the heart beat too fast, and can interfere with the rhythm of heart beats, causing arrythmias. It is important to get things under control sooner, rather than later.

[Ski]

#1065147

Everything Bobbi said is spot on ~ I just wanted to speak to the part of your post that talks about thyroidectomy. The fact that your doctor tossed off "that isn’t done much anymore" is a bit unsettling, because in fact thyroidectomy is still a viable treatment that people take advantage of, and it can be very safe in the hands of the right surgeon. If it is what you would prefer, then you should pursue it no matter what this doctor says. Too many doctors have the attitude that they have done their studies and they have decided which of the multiple options they prefer, so every patient should do exactly that. In this case particularly, that is not helpful. Each of our three choices can be successfully managed, and we can regain our health. In my opinion, the single most important contributing factor to having a happy patient after treatment is one who was educated and made their own choice ahead of treatment. So do consult with your doctor, listen to what they have to say, but retain the right to make your own choice. As long as there is no particularly life threatening reason to choose one over another (the most extreme example being that a hemophiliac would not be wise to choose surgery), the choice belongs to you, no matter how much your doctor would like you to do exactly what they recommend.

[Kimberly]

#1065148

thompson91 wrote: He said if I just do the meds we could go 1 to 2 years and if it doesnt get better thats time lost and then it can cause heart damage.

Just wanted to make a quick comment that you are starting to see more doctors who are willing to let patients go longer than 2 years on ATDs *if* their levels can remain stable on a fairly low dose of meds and *if* they do not have any liver or WBC complications.

Also, I have never heard of heart damage from ATDs…although what *can* cause heart damage is staying in hypER territory for too long. Perhaps your doctor meant that this was a risk if the ATDs did not control your hypERthyroidism.

Obviously, I’m not a doctor, but the 5% hypO number for RAI seems way off the mark. In the past, there was a theory that you could give just the right dose of radiation to kill off just the right amount of the thyroid so that a patient’s levels would be perfectly normal without any meds. But this approach has fallen out of favor because too many patients ended up needing a SECOND dose to correct their hypERthyroidism…so they actually ended up being hypER for a longer period and ended up with more radiation than if they had received a larger dose on the first pass.

Sounds like you are doing a great job of researching your options and that you will be very well informed by the time you get to visit with an endo. Best of luck!

[thompson91]

#1065149

Thanx for the responses everything is very helpful. The doctor meant that if I take the Anti-meds and it doesnt help then it can waste time and have other things happen with the heart. Not the meds causing anything with the heart. Sometimes my thoughts get ahead of my fingers and it runs together-sorry. Yeah, thats what the doc said 5% per year meaning in like 20 years I’d need meds. So I want to run that by the Endo see what they say. Right now, I dont feel sick my energy is up, I have slum times, too but I think everybody does. My work includes working some nights so I may not sleep all night. I’m an EMT (emergency medical technica) I’m going part-time in Aug, stepping down from Fulltime for numerous reasons but this being one of them, just to slow down some. I’ve always been very fast paced. So one more question has all your Graves run in your family, if not what causes it? (stress) Also, since this is an auto-immune disease does that mean we’ll get sick quicker? And does RAI make you sick(vomit) etc. Thanks.
Tina

[Ski]

#1065150

Autoimmune diseases run in families, not necessarily Graves’ ~ so you might have relatives with lupus, rheumatoid arthritis, diabetes, or other autoimmune diseases (even Graves’), but it isn’t a direct link Graves’ to Graves’ to Graves’. Stress seems to be a contributor to ending up with Graves’, certainly, but it’s not a direct cause. One doctor describes it by saying that we have a genetic predisposition, then some external trigger flicks the switch and then we have an autoimmune disease. We’re not sure precisely what that mechanism is yet, and that’s where the research is going.

Having an autoimmune disease is more like having an overactive immune system. It means your body has developed additional antibodies ~ to your own tissue ~ in addition to the antibodies you’ve built up over time to various diseases. So it doesn’t mean your immune system is compromised, per se. What it does mean is that, whenever your immune system is "boosted," your symptoms will also be "boosted," at least while you have active, functioning thyroid tissue, because the damaging antibodies will become active just as the helpful ones are activated. For that reason, we need to be careful with supplements that purport to boost the immune system. I do use echinacea, but I can’t take as much as the package recommends, or else I feel it.

[LaurelM]

#1065151

A benefit of the ATDs is that they can give you some time to clear the GD head fog and allow you time to lean about your choices and make an informed decision about what type of treatment you ultimately want. I went the ATD route and have been in remission for 3+ years. If GD comes back I feel like I really understand all my options and will be able to make a choice I am comfortable with.

Best wishes!

Laurel

[thompson91]

#1065152

Thanks. I have been researching alot. I have found out that diet can play a role with item called goiterens (sp). I have found that some by diet, exercise, relaxing exercises, etc. have went into remission without anything else. I am into that. I have also found a lady Elaine Moore that has alot of info on this as well. I was in contact with the Endo my family doc recommended but they are booked till end of Sept. I am trying to find another one in our area that may be able to take me sooner. In the meantime I am re-checking my diet, continuing light exercise, and trying to have a good attitude. I dont have many of the symptoms that alot of you do and am thankful for that. I’m hoping this in an early stage and can by treated with meds. I have decided I will not do RAI but if it comes down to it I will opt for surgery. I have found reports of the RAI even after 3 days, affecting other family members (mainly husbands) I do not want to make any of my family sick. So thats my plan. I’m trying to reduce stress and just have faith that everything will work out. I’m sure I’ll be on here for support and to hopefully help others.

[Ski]

#1065153

There are claims out there that diet/exercise can help, but nothing has ever been scientifically proven in a good, solid, double-blind, large group study. Make sure that when you are looking at internet information, you check for certifications by medical authorities, to know that the information you’re reading has been checked/vetted by someone in the medical community. The fact is that GD antibodies wax and wane for reasons no one really understands completely, so while symptoms/levels may change after a period of diet/exercise adjustment for some people, that may (or may not) be attributed to the patient having made those adjustments. As long as you are having your levels tested, if they are in the normal range, then that’s the goal, however you get there. Lack of symptoms does not mean lack of trouble. Hyperthyroidism can cause subtle damage as well, damage you can’t necessarily feel moment to moment, but left unchecked, over time, it can all come crashing down. I’m glad you are going with ATDs for now, I think it’s a great way to begin.

I need to respond to the statement that RAI has *affected* other family members even after 3 days have passed after treatment ~ not so. I only say that to make sure that we have the best possible information here.

[thompson91]

#1065154

I have been checking in some books that deal with hormones and what to eat that talk about what to eat to help the thyroid. Alot of it is with HYPO but it does touch on HYPER with suggestions and different foods that can trigger HYPER symptoms. Ski I understand where your coming from with it being Medical Associated but I’m also checking into the natural side of this as well. Thats just me. I’m just checking into every aspect of this. Doctors can only do so much what we eat can affect our bodies in many ways. I’ll find out in 3 weeks what the Endo thinks cause thats when my first appt is. I mentioned to the secretary I’ve using the internet for resourses and she said yeah the docs dont like that too much. However I think I’ve learned more on the net about this than from dr I would see. Just hoping I have a good Endo that is patient with me and what I want. Thanks for all the help!

[Ski]

#1065155

I completely understand your desire to do everything that may possibly help. Just cautioning that there is a LOT of bad information on the internet, so make sure you’re looking at something that can back up its claims. Lots of sites lead into very VERY bad information that is "cooked up" just to sell their concoctions (the more modern version of snake oil salesmen), which is why doctors typically make a face when we say we’ve done internet research. If you’ve been careful and done GOOD research, you will show the doctor that there are valuable resources out here.

[Author]

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