[enough3]

#1066740

You have come to the right place for support.

Sounds like you have been through a lot.

You don’t have to have RAI. You CAN stay on your ADT and give it a year or two and see if you can go into a remission. The fact that you stayed in remission for 6 months PPD is great. Right now I would focus your energy on getting your labs stable on ADt’s. Once you are stable, then you can slowly look at RAI if that is the way you want to go.

I was DX with Graves around 4 months PPD. I just had RAI this past Nov. My son was 2 1/2 by the time I had it done. I was only away for 72 hours…which is not too bad for a 2 1/2 year old:) They are busy busy at that age and have no clue as to the concept of time;)

RAI was the best choice for me. But, I did get stable on the ADT and it was worth the shot at remission (tried around 3 times). At least I know that I tried for remission.

Just remember that it’s your body and your choice on the route you want to take for your thyroid. If your not comfortable with RAI right now, then don’t do it.

[Bobbi]

#1066741

I don’t know where on the internet you got the information, Tamara, that you would need to be away from your baby for three weeks. I think you need to talk with your doctor about that. The internet is a source of information but not all of it is true. In fact, on medical sites it has been estimated that 80% of the info is either out-dated or dead wrong. You need to double check all info with your doctor. It is true that we need to stay away from babies and small animals for a while after RAI, but I have never heard of a doctor telling anyone that the time frame is three weeks. It might happen, but it all depends upon the dose of RAI, on the age of the child, etc.

If your rash and itching is due to an allergic reaction to the tapazole, and it cannot be controlled, and your doctor is pushing RAI, you need to seriously consider doing just that. Or ask the doctor about surgical removal of the thyroid since you don’t want to be away from your child. You do have other options.

[JackieC]

#1066742

I had RAI in 2007 and i only had to stay away from people and small animals for 72 hours no biggie i booked a nice hotel room overlook the beach and did my homework for university.

I developed a severe rash on my legs before i was diagnosed. That is an onset symptom of thyriod disorders, mostly graves disease which i have. It is rare but may not be an allergic reaction.

[Tamara2010]

#1018725

Her is my story…I will make it brief. I need your help as I feel alone in this battle with hyperthyroidism. Starting in 2003, I just didn’t feel myself…anymore. I got sick alot with sinus infections, felt dizzy, got recurrent vaginal infections, my eyelashes which are normally long fell out, and my eyes were dry, and I didn’t have periods, lost weight. Mainly I just felt rotten. Thyroid problems, goiters, run throughout my family. I have an identical twin sister and she is fine. Anyway, I kept going to doctors saying I feel weak, and they would tell me I am stressed and need to rest. I am and have been in a stressful relationship for 7 years…so I thought maybe that was it. I never stressed before. I started loosing my muscle tone and couldn’t walk stairs. I would workout and my chest would burn and squeeze and hurt so bad that I stopped working out. The doctor said, I have costochondritis. I left and delt with it. I went to a doctor once and he said, pretty girls always think something is wrong with them. I felt so alone. I thought it was all in my head!! I was constantly going to doctors and lived this way until 2007. I went to a doctor and told him that I pee all night long and I feel weak and am in pain. He gave me a referral for a endocrinologist and thought I had diabetes insipidus. The endo took blood tests and sent me for a thyroid scan and uptake. He diagnosed me with Hypert. He put me on PTU but I had a horrible rash all over. He said, you need to take RAI. I researched after I was diagnosed and that wasn’t for me. I went to another endo. She gave me tapazole and I was fine. I switched to Dr. Khoury bcuz it was by my home and I heard he was the best endo. ( right now I can barely type for long without feeling like I am going to crawl out of my skin.) ” title=”Sad” /> Anyway, I have been on Tapazole and got pregnant at 38…my dream for so many years…never thought it would happen. Got my tubes unclogged and it worked. We’ll my thyroid went normal immediately after conceiving, and stayed that way until 6 months postpartum. Then I just found out my TSH is 0.02, free t4 is 3.03. The worst it has ever been. I now have a rash on my arms that itches so deep it was bad. I am now on Tapzole 3 times day at 15 mg dose. I have symptoms still but have only been taking them for 2 weeks. My endo wants me to get Rai but I have a 7 mo old daughter and dont want to be away from her for long. I don’t know how long they say it is, but on the internet it says 21 days…yeah right like I can do that. I miss her after 4 hrs. Plus, I dont’ want to be hypo and have those symptoms…tired…I heard that is awful. anyone had RAI…please help…if it has been awhile..let me know…I need yall…noone else understands that this runs your whole body system..God bless you all in this

[Ski]

#1066743

The rash we can get on our legs is called pretibial myxedema, and it is one of the rarer manifestations of Graves’ Disease, but it only occurs on the shins, ankles and feet, so a rash elsewhere on the body would not be the same thing and could well signal a severe allergic reaction to the ATDs. SOME people are able to take Benadryl along with the ATD, and after a while their body becomes somewhat acclimated to the ATD and they can continue to take it. Others find progressively worsening allergic reactions, which can lead to anaphylactic (sp?) shock, so keep your doctor well informed about what’s going on, for your own safety.

[Tamara2010]

#1066744

Thank you guys for your replys!!! It is so wonderful to have support. I had the rash breakout before I started taking the meds again…I thought it might be the thyroid. It went away. I only breakout with PTU, not Tapazole which I am on. Did you all have the symptoms of burning in chest and shortness of breath? Once again, talk to you guys soon and thank you.

[Tamara2010]

#1066745

Jackie, You had RAI in 2007? How do you feel? Do you regret it at all? Did you gain weight? Do you feel better now? I just want to feel normal….I have been on Tapazole for a few weeks now and they don’t seem to work yet at all…I don’t know if they take awhile or what? Thanks all of all..

[teacherhelper]

#1066746

I can sympathyze! I saw an endo today because of a rash on my shins and an overall "draggy" feeling, much like when I was first diagnosed in Oct. ’09. I was originally put on 10mg Methimazole, twice a day, in Nov. then reduced to 10mg once a day the end of Dec. I’m so new to all of this. Yesterday I noticed the leg rash and sore feet like in the beginning so decided a call to the doctor was in order. I saw an endo associated with mine and was good to get another doctor’s perspective. Because of my blood work the last two times he recommends RAI. I’m not to take Methimazole for 4 weeks, get my blood work done and then see my regular endo mid-March. He’s going to let him know what he thinks. This is surely a trying disease…trying in that you never know what will work for you, trying in that you never know how you will feel from one day to the next, and trying in that the times you feel good aren’t very many! While I haven’t been diagnosed for a very long period of time, the endo today feels I’m one of those where the best treatment for me will be the RAI. I was feeling good for maybe a week or two, but I’m looking forward to getting back to my "energizer bunny" self. I know that resting will be of utmost importance, but just to feel good will be a blessing. It’s good to read other posts and know I’m not alone.

[elf]

#1066747

Tamara, had my first kid at 39, too. The second at 41. Over those two years, my thyroid was getting worse. Was diagnosed with Graves when my youngest one was 8 months old. Had RAI when he was 11 months old. Stayed away from both kids for 2 days. That was 4 years ago. Had been skinny before, as any hyperthyroid patient would be (and was proud of course that the weight stayed off so easily with my eating anything). Since it’s not normal metabolism, it’s not justified to expect to keep having "hyper" metabolism while getting rid of hyperthyroidism (through surgery or RAI or meds).

After my diagnosis, I stopped exercising as I was scared for my heart. The fear of harming myself persisted and I didn’t quite get back to exercising until recently, while still having my hyper and pregnancy-appetite. So altogether, in 4 years, I gained 30 lbs. I should have started exercising earlier, maybe a year after RAI (I had eye problems in the year after RAI, so I didn’t really think of exercising then).

But as for my feelings, felt normal for all these 4 years. No problems that would indicate Graves, – no emotions, no symptoms.

Have gotten back to weightlifting recently, and my sleep ability and energy levels are even better still.

[maryintx]

#1066748

The rash if it is on your back and stomach- trunk area can be from elevated liver enzymes. I got a lot of relief from using butt paste and some other heavy duty no itch products meant for insect bites while waiting for that count to go to normal.
. One thing I had was a gallstone scan since elevated liver enzymes, the trunk rash, the yucky tummy feeling aches like that can be gallstone issue.

[JackieC]

#1066749

RAI did kind of suck but I was over trying to become balanced with meds unsuccessfully for almost a year. It has been a long journey, almost 4 years. I had RAI and I was unaware that about 6 months would go by until I could take med again. That is when I gained about 25 pounds. I’m 5’3 and have always been 120lbs I went to about 145 lbs and I did not change anything, it was a result of going from hyper to hypo. After I was able to take meds I went from going For a blood test every 6 weeks to now once every 6 to 8 months and my levels are very consistent when I get tested now. It took almost 2 years to get here but I feel much etter than before Rai. I did nutrisystem too and I weigh 125 and it wasn’t hard to follow at all. I just had orbital decompression on my right eye too. I woud do RAI again if I was more informed. I thought I had asked enough questions but the time frame it took to become "normal" was a long time overall. It is not a quick fix but it’s better than the yo-yoing I was doing before . Good luck!

[JackieC]

#1066750

I think I choose RAI because it may have took a few years to get where I am now, but I’m stable and will stay this way if I keep up with my current lifestyle. Trying to become balanced in meds is very mentally exhausting. Even if you go into remission for a few years it can come back and then you have to start all over again. I figured with RAI I would get it over with andbget my life back and not worry about future problems, but thus just me everyone has a different opinion about it. I wish there were other options but im pretty satisfied after everything now that I have my life back.

[Kimberly]

#1066751

Tamara2010 wrote: I have been on Tapazole for a few weeks now and they don’t seem to work yet at all…I don’t know if they take awhile or what?

Hi Tamara – The meds do start working right away to block production of *new* thyroid hormone. However, we can still feel hypER for several weeks while the body uses up its existing stores of extra thyroid hormone. Hopefully, you will be getting another set of labs done soon just to make sure that your levels are moving in the right direction.

Best of luck!

[Tamara2010]

#1066752

Thanks you guys!! ” title=”Razz” />

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