[susandemarco]

#1067822

Hi Stacy,
I am considering having the RAI soon and am wondering, after you had it and went hypo did you gain much weight. And if you did, once you
were on the synthroid did you start losing soon after you started it.
Thank you for any information.
Susan

[StacyQ]

#1018915

Hello Everyone!

This site is wonderful! I’ve been lurking for a while. Reading stories and decided to join and share my story. In a nutshell, I was diagnosed with Graves Disease with a nodule/goiter (thru the uptake and scan) on my thyroid about 2 ½ years ago. When I was diagnosed, they told me that I would need a needle biopsy on the nodule to see if it was cancer or not. Hmmm….needle? Ummm..biopsy? Wow..how did this all happen!! Since I absolutely HATE needles, just hearing NEEDLE alone was enough to make me want to crawl under a rock and die! After I went home and cried, I decided to read up on thyroid cancer and Graves disease and educate myself. I went for the biopsy which was one of the worst experiences I’ve ever had, I’m not gonna lie. Any of you that have had it done, I think, can identify with the uncomfortableness (is that a word?) of this procedure. Thank God the nodule was BENIGN! After that was my next step…deciding to take meds or do the RAI treatment. Honestly, the RAI treatment kind of scared me in the beginning so my endocrinologist said that he was going to put me on methimazole until I decide what I want to do.

Two years later…I decided on the RAI treatment. Basically, after they took me off the meds, I did not go into remission, in fact, I was a mess again! I thought, this is it, I’m getting the RAI done and my endo also said that the medicine was hurting me more than it is helping, which I agreed upon cause I was always sick (low immune system) and never, really felt RIGHT since I’d been on the pills. Now, I told you all that, to tell you this, the RAI treatment was the best thing I’ve ever done in my life! I had it done July 17th of this year and became EXTREMELY HYPO by mid Sept or so. I was having cold sweats like every half an hour, my blood pressure was extremely low, I was fatigued, extremely tired and sluggish. I told my husband that I felt like the walking dead! Hahahahaha! I went to endocrinologist and she immediately put me on Synthroid. Apparently, my TSH levels were 84! I asked her where my numbers SHOULD be…she said between 1.1 and 4.8! Holy cow! No wonder why I feel like I’m ready to go into a coma! Hahahaha! Even though all of these things happened to me, all I could think of is, “I would rather have this happen to me than having heart palpatations everyday…ALL DAY!”

There’s a little run down on my battle with Graves. Right now as we type, I’m on my 3rd week of Synthroid and I feel like I’m getting better everyday. Granted, I’m still uncomfortable and not normal, but then, who REALLY IS normal? Hahahaha!

Nice to meet everyone! ” title=”Very Happy” /> (hmm..that was a pretty long nutshell, wasn’t it?) hahahaha!
~Stacy

[npatterson]

#1067823

Thanks for another good report on RAI! Welcome aboard.

Take Care,

[StacyQ]

#1067824

Sorry it took me so long to respond Susan. I’ve been super busy and during this whole Synthroid stuff my primary dr. lowered dosage on my blood pressure meds because my blood pressure and pulse were extremely low, so, 4 days ago my blood pressure was 150/104!!!! whoaaaaa!! no wonder why i’m having headaches and sinus problems! Anyways, just got back from primary and i’m back on my regular dosage plus a blood thinner until my thyroid gets right! I’m still very sluggish, cold sweats are for the birds too!!!! But, as i mentioned before in my other post, would rather have this than heart palpatations!

To answer your question about weight…I’ve gained about 10lbs since I had my RAI. And it sucks. I’ve been on the Synthroid since Sept 24. My thyroid dr says that i won’t feel full effect of the Synthroid till i’ve been on the meds for 6 weeks or so. But when i got weighed today I was 2 lbs lighter than i was before i started on the Synthroid. Honestly, i hate that i’ve gained this weight, but, i can’t stress about it! I’ve got too many more important things I need to think about like getting my blood pressure right again and getting this thyroid to cooperate!!!! hahahaha! I started working out 4 times a week BEFORE i got my thyroid done because i KNEW that i was gonna gain weight, so, I suggest to do that before you get RAI. It made me feel better about the whole weight gain thing ” title=”Smile” /> I’ll definitely keep you updated on my ever progressing thyroid and HOPEFUL weight loss as soon as my thyroid behaves itself!!!! ” title=”Neutral” /> Susan, i recommend the RAI treatment whether you gain weight or not….weight can be controlled by exercise and eating right. Your overactive thyroid can kill you and as much as i know that i am overweight, I would rather have a ripple or two around my stomach than feel the way i used to feel before the treatment. Just my opinion from my experience ” title=”Very Happy” /> Good luck to you in whatever treatment you choose ” title=”Smile” />

Have a great day!
~Stacy

[susandemarco]

#1067825

Hi Stacy,
Thank you for getting back to me, and it couldn’t have been better timing. Today I received the results of my last blood work from last week,
and I am still in the Graves Disease range, and my endo said she could either higher my dosage or go for a thyroid scan and then the RAI.

I think I am at the point of having the RAI, but I think I would like to wait until after the holidays.

I have come to terms with the weight gain, as long as when I get stablized I will be able to lose it.

I appreciate your information, and if at all possible keep me posted.

Thanks again,
Susan

[runlacie]

#1067826

Hello Stacy! Just thought I’d say hi since you sound like my twin— I had rai on 7/20 and went hypo with the same symptoms as you- low pulse, BP, feel like a slug and gained 10+ pounds, started levoxyl on 9/22. My endo would only give me 50 mcg to start and I know I need more. I feel like a synthroid junkie… can’t wait for my next appt so I can get a bigger fix. But you’re right, it’s all better than the palpatations and craziness that went with hyper. I am really disgusted with the weight, tho. My appt and labs don’t get done til first week of Nov, so I’m just trying to deal with it until then. What’s your starting dose of synthroid? Take care!!!

[StacyQ]

#1067827

Hi Lacie and Susan,

Wow! Yes, we could be twins! My endo has me on 125mcg, once a day of Synthroid. I have to go for blood too, second week in Nov.I’ve been feeling a lot better each day. What was your TSH level Lacie before they put you on the Synthroid? I think he gave me such a high dosage because of how HIGH my number was. I’m telling ya, I was comatosed! LOL! Also started the blood thinner along with my blood pressure meds. Blood pressure yesterday was 112/88. So that was good. Yeah, my weight kind of sucks and I wish I could get a period! LOL! Never thought I’d say that! I’m 2 ½ months late! Yes…that’s 2 ½ months, not weeks! I feel miserable! Anyone else have probs with their periods? (of course, I’m talking to the women!) hahahahaha!

Susan, may I ask how long you’ve been on anti thyroid meds? My endo said that he wouldn’t keep writing a prescription for methamazole because since it wasn’t helping me, the side effects will just hurt my body in the long run. I had been on the meds for 2 years and he said that he’d only write 3 more months for me if I needed time to decide. I had an endo before the one I have now that said the same thing. I had already decided by then and during my remission (the time before I made my appt for RAI), I thank God that I did the RAI. There is NO WAY that I could live without those meds and there is no way that I’m gonna take these anti thyroid meds for the rest of my life! Especially when my primary and endo said that if I get the RAI I may be able to have a reduction on my blood pressure meds or be able to get off of them completely! That was enough encouragement for me! I’d rather take a hormone pill than meds with possible side effects down the road! : ) Good luck to you in whatever you decide and keep us all updated! ” title=”Very Happy” />

I’ll update you guys when I get my blood done in November.

Have a good one!
~Stacy

[runlacie]

#1067828

Hi Stacy- my TSH was 29.6 . I’ve seen plenty higher, but mine was high enough to have me pasted to the furniture. I feel better than that now, but I think I need more than 50. If my thyroid produced no hormones, my full replacement dose based on weight would be about 100. I hope they try me on at least 75 when I go for my next labs. Glad your BP is coming down. ” title=”Smile” />

[susandemarco]

#1067829

Hi Stacy,
Let me tell you a little about myself, because my story is a long one. I am 62 years of age and was diagnosed twenty years ago. I was on and off of
PTU since then. The first time I took it for about eighteen months and went into remission for about seven years then it came back. The second time
again about eighteen months, but my remission only lasted about three years. After that each time I took the PTU remission was shorter and shorter. This
last time only two months. Now I am back on it again and had blood work last week and the dr. said I am still hyper. I think I am ready to through in the
towel and do the RAI, in fact I am waiting right now for the doctor to call me back.

I think I will take the meds until after the holidays, and then the RAI. I am just concerned about the period of time that I have to stay in isolation, as I
have eight grandchildren and I babysit for them quite often. So that is my story, and that is why I have been following your story and Lacey’s.

Thanks for listening and I appreciate any information you can give me.

Thanks and God Bless,
Susan

[StacyQ]

#1067830

Susan,

Gotcha! Wow…you’ve been dealing with Graves for a long time!!! It’s always good to hear that people have actually gone into remission. Unfortunately, that wasn’t the case for me. I have a nodule/goiter on my thyroid that just wanted to run a marathon 24/7!!!!! hahahahaha! Now that i’ve gotten the RAI done, i don’t feel the nodule as much..seems like it may be shrinking!!! yay!!!! ” title=”Very Happy” />

I think the amount of time away from family depends on the dosage. Don’t quote me on that but the facility that administered my RAI said that I could go home in 3 days but to not hug/kiss,etc…with hubby for another day or two (I stayed at my father’s house that is vacant at the moment). They told me that since the treatment goes thru your system and you release it thru your urine mostly (..the rest goes thru saliva, sweat)…to not have a baby sit on your stomach, hip or hug them for the 3 days (including animals). Do some searches on the internet…you’ll find some useful information on RAI and isolation ” title=”Smile” />

Good luck to you! And keep us posted on your blood work!

~Stacy

[jenlynn724]

#1067831

My name is Jennifer, and I was diagnosed with Graves July 08. My doc at the time didn’t want to treat me, and left me unchecked for a year. I recently switched PCP’s, and was referred to an endocrinologist immediately. I have been on PTU, and Atenolol for 7 weeks, with some improvement, but my levels are not normal yet. My initial TSH was undetectable, T3, and T4 were both more than double high normal. I have no family history of this, and don’t know what to expect. I hope to learn more here ” title=”Very Happy” />

[Ski]

#1067832

Hi Jennifer!

You’ve certainly come to the right place, I’m so glad you found us! The most important thing to know is that we are all different, and treatment takes time. We’re here for you, and we definitely understand, since we’ve all been there… ” title=”Very Happy” />

Go ahead and search up info on the Board, there’s a lot available here that will probably help.

[Kimberly]

#1067833

jenlynn724 wrote: My name is Jennifer, and I was diagnosed with Graves July 08. My doc at the time didn’t want to treat me, and left me unchecked for a year.

Dang, we needed you to settle a disagreement during the final breakfast roundtable at our conference last weekend! ” title=”Razz” />

Someone asked about the long-term effects of untreated hyperthyroidism, and the endos in attendance said that would *never* happen to a patient, as their doctors would always provide immediate and appropriate treatment.

The endos that attend the GDF conference are obviously the ones who keep up with the latest research and ensure that patients are getting the best care possible. However, I don’t think they realize the extent of how many patients are NOT getting proper treatment.

I hope that you have since found a doc that you are comfortable with and that you are well on your way to recovery. You have already taken a first step by joining this board and working to educate yourself about Graves’.

Best of luck!

[enough3]

#1067834

Hi.

Hang in there. Keep taking your meds on time everyday and you will see changes in your labs soon. When I was first DX with Graves, it took at least 4 weeks for my TSH to budge from 0.001….it finally did:)

This forum is great. Welcome.

[jenlynn724]

#1067835

My previous doc wouldn’t even refer me to endo. I asked, and he told me it wasn’t necessary.
I was hospitalized twice with a rapid irregular heartrate. The most recent it was 160.. I felt like total crap all the time. I would fall asleep in the middle of the day for no apparent reason, but I couldn’t sleep at night. The biggest problem for me was the shaking my hands, legs, and sometimes my whole body would shake. My blood sugar also became high, but my new endo assured me that it is most likely due to the thyroid, and will recheck when my levels are stable. I do feel much better since I started the meds, and my doctor is fantastic. I do have one question though.. I have been sick for 5 weeks now, with upper respiratoty symptoms, and now I have a sinus infection. My kids all had a cold for 3-4 days, but I can’t seem to kick it.. Does this have anything to do with Graves, or my meds?
Thank you all for responding, and making me feel welcome ” title=”Very Happy” />

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