[sasuesse]

#1019069

Hi I was just diagnosed with Grave’s this past week and still have many questions regarding it. My journey started a few months ago while visiting my OB/GYN for removal of my mirena so my husband and I could try for our third child. I explained some of the symptoms I was having, excessive sweating, hot flashes, diarrhea, horrible fatigue and achiness. I thought it could have been the IUD, but he sent my thyroid levels off and low and behold my TSH was 0.04. T3 and T4 were within the normal range. He sent me off to the endocrinologist. There we began with an ultrasound (showed no nodule or goiters, just mild inflmation). I went for the uptake scan and the results to that were high at four hours but within normal limits at twenty four hours. My follow up appointment to speak with him was a few days later.

At my appointment he was very gruff, short and did not explain anything. He sat me down said you have Grave’s disease (he also mentioned I was a nurse so I shoudl know about that, one of my biggest pet peaves, yes I am a nurse, a pediatric one at that, but I am a patient right now) and we want to schedule you for RAI, back that train up. I explained to him that my husband and I would like to have another baby in the near future and that option wasn’t the best for my situation at that point and am only 26 and would like to try something less invasive first. After convincing him of that he said he would put me on PTU but he didn’t like it. He said he would see me in six weeks, I started to ask my questions and out the door he was, no answers in hand for me. He also didn’t have a T3 level with this either. I made my appointment though and when I got home realized it was for almost 8 weeks in the future. I called and the receptionist said that’s what he had open and if my labs were really bad he would call me back and she hung up (I’m only supposed to do the labs 3 days before the appointment). Needless to say I am lost in in the dark right now. I did however call the GYN who referred me to an endo and have an appointment with the one they typically use in two weeks. Meanwhile I’m on PTU 300mg a day (100 mg 3 times daily). I have started to feel better alreay. Less hot flahes, sleeping much better and not as fatigued or achy.

I do have questions about getting pregnant, he said I was done having children without RAI. I understand the levels have to be in check for it to happen. Are there many success stories about getting pregnant with Graves disease and what it difficult to do so. I have no period right now so that is one question I have for the new doctor on how we work with that. Are there any special dietary suggestions to go by and what over the counter meds are safe to take. I know most of have a warning for thyroid disease. Do meds typically work for people or is that a person by person basis and if so is there an average time it takes them to work? I also question the uptake scan and it being normal at 24 hours. Is this just sayi8ng my thyroid is a little off? I just have many questions and I’m glad I found this board and decided to find a new endocrinologist after reading some posts. Any help with these questions would be greatly appreciated. I feel so overwhelmed with all the information and how to put it together right now.

[npatterson]

#1069012

Dear Sasuesse
I don’t think I can answer all your questions right this minute, but I can give you some information.

I have been told (many times) that the warnings on medicine about thyroid conditions apply if you are hyper. If your levels are okay, you are considered euthyroid. Still, use caution, and be aware of the effects on you.

Where do you live? Does this doctor treat a lot of Graves’ patients, or is most of the practice diabetes and hypo? You have already decided to consider a second opinion. You deserve to have your questions answered, and to be treated with respect and dignity. YOu are right, just because you are a nurse, doesn’t mean you should know everything about everything.

If you will e-mail me at "nancyngdf@bellsouth.net", I can attach some information to you.

The current dose of PTU can carry you for a while, until you can get some real answers and decide on a real course of treatment.

I think there are plenty of success stories for being pregnant with Graves’, but you really need to get as many bases covered as is possible. You may have to delay getting pregnant for a while.

I am sure you will hear from others.

Take care,

[ely2009]

#1069013

Hi there.

It sounds like you could have seen my old endo – very similar – gruff, no time for questions and explanations, only his opinion mattered, etc. It was horrible to be diagnosed with something that I knew nothing about and to feel so terrible physically and then get no info or support from my doc. I’ve since found a new doc who EXPLAINS my options/listens to my symptoms, etc. It makes a HUGE difference in how I’m dealing with this. Hopefully, you’ll find that in the next doc.

This website has a great amount of info and support. Read through it and ask questions before your next appt. You’ll be much more prepared and know what to ask.

Good luck,
Emily

[ashew823]

#1069014

hi,,my name is amy,,i have hyperthyroidism(graves disease) i have been dealing with this for ten years,the hard part about this disease is it doesnt always show up in a blood test especially when you first get diognosed,not in a scan ,ultrasould,nothing,,then it just hits you ,,symptoms off and on,,back and fourth,,after ten years of trying different medicines,going without medicines,,then having it go dormet for a while after i had my kids,,then it came back like a bad storm just recently,so my endo decided it was time to have the radioactive iodine treatment,so i did,and i am currently secluded in my room right now,its not easy i have kids.but once this works and kills off my thyroid completly then i will finally be better.but just know that if you do have hyperthyroidism ,,it never just cures itself,ive learned the hard way about that,and in the end if you dont get it taken care of it can potentionaly be fatel,because it causes your heart to beat irraticaly..

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