[Bobbi]

#1074829

Hi, Clara Sofia, and welcome to our board.

I know that getting a diagnosis of Graves sounds horrid, but we are fortunate: our disease has a diagnosis, and there are treatments that work to give us back our health. My mother had RAI about 35 years ago, and she was never again ill because of her thyroid. (Other illnesses, yes, but none related to either her thyroid or the treatment.) I had RAI about 12 years ago, and I am healthy again, too.

As for the meds, you should indeed start taking them right away. What they do is chemically block the production of thyroid hormone. Our doctors try to give us just enough to to keep us at normal levels of thyroid hormone. Being hyperthyroid is very dangerous to your health. There are complications that can arise from not treating it. There are some infrequent side effects of these drugs. They can lower the white cell count making it difficult to fight off infection. This only happens in about 5% of people who take these meds. But, since it is a serious side effect, if you come down with an infection (sore throat, ear infection, etc.) it is wise to see your doctor and get a blood test to make sure you have adequate white blood cells. Stopping the drug if white cell count is down, typically reverses the process. Some people are develop arthritis-like symptoms or a rash while on the drugs. Even though there are potential side effects to the drugs, the effect of staying hyperthyroid (i.e. not taking the drugs) is much more dangerous to your health. It is very important that you get effective treatment as soon as possible.

RAI removes the thyroid chemically. Iodine is only used in the body inside thyroid cells. So when we swallow the RAI, it goes directly to the thyroid. If it does not get absorbed by thyroid cells, it is rapidly eliminated from the body, primarily in the urine (but also via sweat and saliva). It has a very short lifespan, so it does not stay in the body very long. But while it is there, it is destroying thyroid cells. It has been studied for over 50 years, and is much, much safer than staying hyperthyroid. Women who have had RAI have gone on to have healthy babies, too.

Every medical intervention has plusses and minusses, but you need to know that our treatment options are much, much safer than the disease, and that they can make you well again.

Wishing you a healthy New Year,

[clara_sofia]

#1019887

Hi,

I live in Portugal, my name is Clara and I’m 29 years old.
I have a daughter that has just turned 1 year last september, and i still wish to have another child.
Yesterday my Doctor told me i have Grave’s disease, i’m very freightened, and don’t know what to do. My TSH is 0.013, is that high or low?
I was so scared whem he told me the bad news, that i did’nt ask all i should, so here i am.
My doctor whants me to start the meds, but he would like me to do the RAI next month.
Could anyone tell me the good and the bad things of both, or were i can get detailed information so i can negociate with him?
I should have started today with my meds, but i don’t know what to do, should i wait for another opinion?
I feel so lost…
Thanks everyone, and i hope we all have a very good new year.

[Kimberly]

#1074830

clara sofia wrote: Could anyone tell me the good and the bad things of both, or were i can get detailed information so i can negociate with him?

Clara Sofia – I can only address the ATDs (anti-thyroid drugs), as that is the route that I am currently taking.

The good: This approach could potentially give you the chance to go into remission with your thyroid intact. While the thyroid burns itself out anyway in some Graves cases, I’ve heard a lot of success stories from patients who have eventually been able to wean off the drugs and maintain a euthyroid status. That’s what I am hoping for!

The bad: There is a chance of side effects, which includes damage to the liver and a severe reduction in White Blood Cell count. So it’s important to get a Complete Metabolic Panel and White Blood Cell count with each set of labs, especially early on. My WBC started to crash about 2 months into the meds, which was really scary, but the problem reversed itself when I reduced the meds. There is also some controversy over whether ATDs should be used long-term (more than 18-24 months).

You are taking the right approach in terms of looking at the pros and cons of each treatment option and working with your doctor to make the right choice for you.

Good luck!

Kimberly

[Val]

#1074831

Hi Clara,
wow, you must feel very overwhelmed. I am brand new to this website and I have seen so many treatment variations described. I was diagnosed in sept of 06. By Nov I had extreme eye symptoms and the skin on the shins thing was the first symptom along with extreme fatigue. I was so hyper thyroid before i started any meds that I remember sitting on the floor and not being able to get up. So hyperthroid that cells could not turn over or replenish fast enough and I had lost muscle strenth-very dangerous when you realize your heart is a muscle. In fact that is how my grandmother died-grave related heart failure-diagnosed on her death bed. so I wasnt going to treat this lightly. From My point of view it it better to take thyroid than throid supressing meds that have to be monitored closely. So I asked for my thyroid to be removed and I take thyroid every day. I also have had orbital decompression as my vision was being threatene. and 1 muscle surgery. I think I might be ready for eyelid surgery in a few weeks. I am pretty happy with all the results. I would say to anyone go with your gut feelings about your treament options, know that there are options. For me I wanted everything that could be done and I wanted it yesterday. Hang in there
Val

[Mickey65]

#1074832

I had the RAI done about 3 weeks ago, and it didn’t cause me to have any ill effects. That feeling of a bowtie around my neck is pretty much gone now.

I still itch like crazy on my legs and lower back, and my eyes feel puffy and dry, but on Jan 7th, I have an appt with my endo for a check-up, so I’ll be going over everything with her.

It’s up to you to decide which route to take for your Graves –

1. Pills – which you take for a few years and they may not work for you at all, and you’ll end up having to do RAI or surgery anyway. Also there is a risk of liver problems from the pills.

2. RAI – taking one radioactive iodine pill. I took that, and so far I feel a little bit better when it comes to my neck. My endo said it was the safest way to treat Graves

3. Surgery – very evasive and there can be a risk of having your vocal chords nicked or cut during the surgery.

Just carefully go over all the choices and do the one you feel okay about – deep in you heart. I went with RAI, since that was the one I felt okay with.

[clara_sofia]

#1074833

Hi,

I don’t know how to thank you all for the kindest feedback you all gave me.
I’m slowly getting on my feet and trying to find more and more information about Graves, but i’m still out of the meds, because on monday i’ll go and clear things out with my doc.

I believe it is true, we must be faithfull to our hearts, and doing so i must start with med, maybe a miracle will happen and i get to be one of the lucky ones and get to a euthyroid period.
I still have no symptoms, and my eyes are normal so far, but (from what I’ve red) starting the meds can trigger the eye disease, is that really true? But first thing on monday i’ll buy my meds.

Thanks for making me feel strong and brave, and for being a light in this Graves darkness… I’ll fight this true, i must believe in that.

I’ll be in touch.

[Bobbi]

#1074834

Hi, Clara:

No, starting the medications does not "trigger" the eye disease. You are already at risk for developing the eye disease because of the Graves. There’s no way around that. Some folks develop the eye disease before their thyroid even goes wonky. Some develop the eye disease at the same time as their Graves is diagnosed and they start treatment (giving rise to the conclusion by many of them that their treatment triggered the eye disease). Some don’t develop the eye disease until months and months after successful treatment. Some people do not ever develop overt symptoms of the eye disease. But some doctors believe that 100% of us with Graves have "some" degree of eye disease, even if the symptoms of it are not observable. They believe this because of the development of soft tissue imaging techniques (like MRIs, CAT scans, ultra sound, etc.); using these tests doctors have found eye muscle changes in a much larger number of Graves patients than they expected to find.

[Pavaal]

#1074835

Hi Clara,
I too was diagnosed after having my third baby. One year after he was born I was down to 100 lbs. I was hyperthyroid and graves. I was put on Tapazole. After 1 year I was in remission and taken off pills. I was off for 2 months and then found out I was pregnant with #4. My graves symptoms started to develop, after blood work I was put on PTU for the duration of my pregnancy. One 50 ml tablet 3 times a day. By the time my baby was born, I was on 1 pill a day, taken off day of delivery to breast feed. I have been off medicine since, as my levels were fine. Here I am 14 months later, my Graves has flared up and my endo put me back on PTU since I was still of child bearing years. My baby boy is perfectly healthy. I never suffered the bad taste. Hope I am as lucky this time. I was very sore, but figured it was because I was pregnant with #4. So talk with your endo if you are still considering more children. You can have a baby on PTU, my baby is proof. I do feel this Graves thing is a life sentence. Noone in my family has it. My endo also recommended RAI, I am not thrilled. Also, I was told if I have this I can not be around my children as radiation can effect them. Can be in the same room as my baby and can’t hold him or my 4 year old. I am going to pass until my 2 small one are older. They are still at an age where they want there mommy. Does any one know if RAI works, Dr. says high rate of going hypo. I don’t want to be heavy and I hate taking pills!!!!
I don’t know your condition, but having a baby on PTU was safe for me and I have a beautiful baby as proof. Take to your Endo if you are still considering. Don’t give up. Now just trying to change my eating habits and figure out what to eat and what not to eat with Graves.

[Pavaal]

#1074836

Also, my eyes are fine. Alittle light sensitive,I need my shades outside. But my eyes were fine looking when I was diagnosed and they were fine on PTU. No buldging. Buldging goiter and buldging eyes are my biggest fear. So far I have neither.

[MonikaOH]

#1074837

Hi,

I’am in a simillar boat like you (if you breastfeed, you may check risks to baby, I had to stop).
I am more linient toward surgery than RAI. Surgery take care of it forever… RAI – I have just met a person that got 3 and them surgery.
I am simply affraid of radiation. My body doesn’t react well to lots of chemicals.
Also, with IRA you have to be away from people for 3-5 day and have limited contact with babies longer (they suggest you go to hotel for first 3-5 days so you don’t pass radioactivity to your family).
For now I am on PTU and atenolol (i lost 67 lbs, 30 of muscles) but I think I want to take care of Grave’s before having another child.
Good luck to you!

[Author]

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