Post # 1
hey bees! i’m hoping that someone has some experience with this…
so last week i was diagnosed with hyperthyroidism and my endocrinologist wants me to have it taken care of right away. i’m very fearful of the treatment he wants to give me, but i understand it is for my wellbeing and all that.
one of my concerns is that i will gain a ton of weight once my metabolism is brought to a normal level. it took a lot of work a few years back to lose a decent amount of weight, and i don’t want to go through that again- and the wedding is not until next may (dress is already purchased)!
has anybody gone through this, or know someone that has? i’m REALLY nervous about this whole thing!
Post # 3
A very close friend of mine went through this. Now please note I am NOT in any sort of medical profession and have no professional experience – this is what happened with her. She is a teen tiny girl. 5’6” maybe weighs 105. She had very extreme hypothyroidism, and they ended up removing half her thyroid. This was about 2 years ago. she is still the same size she was originally. If anything, she isnt as gaunt, but she is definitely not any bigger. Now my mom, her thyroid was removed because of a tumor. She did gain weight, but hers was never hyper, so I dont know. I would truly talk to the endocrinologist about yor fears and conerns. He/she can put everything into perspecitve and give you some factual information about it. Your thyroid is sensitive though, I wouldnt let it go untreated for too long. Good luck
Post # 4
I had hyperthyroidism, as did my mother. The first doctor I went to wanted to do surgery immediately, which both my mother and I balked at. Within the first year of treatment, there’s a chance it will normalize on its own, as it did for my mother. For me, I was on hormone blockers for a little while, but then I couldn’t afford treatment and the condition was untreated for a few years (NOT recommended! ALWAYS stay on your meds!) Anyways, I got a job eventually with medical insurance and immediately went to see a doctor and specialist. My hyperthyroidism had already gone down to an extremely mild state. After a year on the meds, it went away on its own, which is REALLY unusual for someone who had it untreated for as long as I did. Usually, if it didn’t go away after a year, it’s lifelong.
I suggest getting on meds first. Not the radiated iodine or surgery, I mean the hormone blockers. Destroying your thyroid is living with hypothyroidism should be your last resort because once the organ is gone, it’s gone. Yes, hyper is harder to control than hypo and you’ll have to go to the specialist every 6 weeks or so to make sure your meds are the right amount (thyroid activity can fluctuate), but I think it’s worth it to give your thyroid a chance to normalize on its own so you don’t have to do something irreversible.
Having said that, something like Graves Disease (what I had) can be triggered by stress. Make sure that while you’re treating the disease, you are also treating yourself right. Exercise, de-stress, relax, eat healthy and don’t sweat the small stuff.
Post # 5
Oh and I know that you’re afraid of gaining weight, but weigh that against increased risk of heart attack due to the constant rapid beat, the loss of muscles in your legs (made it REALLY difficult just walking down the stairs for me), the rapid breathing cause your lungs have to keep up with your heart, the insomnia (a symptom for some people), and the fact that you’re always warm and super warm and sweaty in the summer! Yeah, it’s great when you want ice cream in the winter, but your health is not worth sacrificing for a dress that you’ll only wear for a day.
I also forgot to mention, but alluded to it in my previous post that both the surgery and radiated iodine will most likely cause you to become hypo, which means being on meds all your life. Both being hyper and hypo also means that when you want to have children, yours will be considered a high-risk pregnancy. I have a friend who is hypo and she has a fine baby now, but while she was pregnant, her hormone levels had to be monitored very regularly. Just some other things to consider
Post # 6
During law school my Mom found out she was hyperthyroid and her doc told me to get tested. That’s how I found out I had hyperthyroidism (caused by Graves disease). At the time I thought I was just stressed from law school life – I was always starving, constantly hot, had a really fast resting heart rate (I thought I was just out of shape), and like the other commentor mentioned, had severe muscle fatigue where even walking a few stairs caused my legs to shake uncontrollably. Also, I started having heart palpitations and I would get tired really easily. I was not super skinny (5’0′ and 105lbs), but my appetite was out of control.
I was put on beta blockers and some other meds for a few months, but my thyroid levels were off the charts – the docs were shocked that I was able to function. I ended up doing the radioactive iodine treament. My thyroid was so resistent that the first dose did not work (levels went down, but testing done a year later showed my thyroid was overactive again), but after my second dose, my thyroid levels went down and I finally realized that I was back to normal (eating normal amounts, able to wear long sleeve shirts without sweating, able to work out without my heart beating uncontrollably, being more active, sleeping normally, etc.). I have to take a thyroid supplement once a day…it’s smaller than a birth control pill (it’s measured in micrograms) and I have no bad side effects. I am SO GLAD I found out about my thyroid and had it treated. That was about 5 years ago and all I’ve had to do so far is get my thyroid levels checked once a year…not so inconvenient.
I DID NOT NOTICE ANY SIGNIFICANT WEIGHT GAIN after my thyroid treatment, but I’m sure some people may have a different experience. I noticed my appetite decreased, but I have stayed the same weight pretty much since my thyroid treatment. I lose weight when I’m eating well and working out and I gain weight when I’m lazy :), but I’ve stayed pretty much the same weight over the past 5 years. So don’t let the fear of gaining weight delay your treatment. For me, I felt so much better after getting treated!
Post # 7
I had hyperthyroidism this past year. I was diagnosed after I noticed that I was dramatically thristy, could not get up if I squatted down to get somthing, was out of breath walking up the steps, and constantly going to the bathroom. My hands were very shaky and I dropped 25 pounds in a matter of a month. Granted, the weight loss was wonderful, but my health was not. I was diagnosed with Graves disease, and I also carry the Graves eye disease and a goiter. I went on Taprozel, varying from 20 milligrams to 40 milligrams (10 mill pills), a day for months. My endo told me I would die before my thyroid would burn itself out. The worst side effect for me, was the mood swings. I gradually gained back the weight, however, once my thyroid stabliized, the goiter kept growing. Radioactive therapy was not an option because of my eye disease and the Taprozel was harmful to a fetus. My only choice was surgery. I was nervous at first, but it was the best decision I ever made for my health. I’m on synthroid now and feel better than ever, no more mood swings or side effects and my weight has been pretty level. Get a good endo, get treated, and take care of yourself. This issue is more common than people think!
Post # 8
I have been battleing thyroid problems for years. Many of the symptoms above and more. I finally got so bad that when they did a blood test, I had no function in my thyroid so they put me on medicine, which helped some but since my thyroid would go back and forth on non-functioning and functioning it was prity much impossible to keep my meds balanced and I would be sick all the time and I developed a goiter also. They said my best bet would either be the radioactive iodine or removal of my thyroid. I did not want the radioactive iodine for my own reasons of I just don’t think you want to put cancer causeing stuff into your body if you don’t have to and why would I want some dead body part sitting in my body, to me with my body and medical history I was afraid of infection and stuff with the dead non functioning part in my body. But that was my choice. So I chose to have it removed as to be able to regulate my medications and such easier. But once they removed it and did the biopsy on it they found I had hoshimotos disease and also Thyroid cancer. So I was glad I pushed to have it removed as they had never thougth that a possibility.(I am not saying everyone has cancer or should have it removed all the time) But me it was a blessing. SO after that it did force me to have the radioactive iodine to kill off all remaining cells. I have gained a lot of weight but we also do not have insurance and have not been able to keep up with treatments so that probably has a lot to do with it.
I do not recommend not doing treatments or slacking on this either. Your thyroid does run a lot of things in your body and it is very dangerous to mess with not having proper treatment. I would stay on top of it for sure.
Post # 9
thank you all so much for your comments- i sure did not think this would be a popular thread, but i am glad this seems to be more common thing than i thought! i made my appointment for the iodine radiation therapy this morning for 9/10-11 and am dreading it, but i agree with you all that it’s best to get it over with and i’m crossing my fingers for no weight gain like indecisivebride!! ugh!
Post # 10
Good luck! And wonderful choice in seeking treatment. Keep coming back for motivation if ya need it
Post # 11
I have Hashimoto’s Thyroiditis, which means I fluctuate between Hyper and Hypo – sometimes within days. It’s like a constant TSH roller coaster and I HATE it. I was diagnosed with Graves Disease at first, put on beta blockers for the horrible heart palpitations and waited a year. They finally decided they wanted to perform RAI, which was fine, my sister had it about 15 years before and was fine. But when I went in for the initial uptake scan (the day before the RAI) I was told that I couldn’t have RAI because I had been misdiagnosed. 🙁 I wish I could have, honestly. My sister really did have Graves and RAI totally helped her – she’s on synthroid every day of her life (as am I, even with the functioning (somewhat) thyroid) but her levels have been consistent for TWELVE years. Mine change so often, that I rarely make it through a 30 day supply of synthroid before they are changing my prescription again.
Going through symptoms of both, I have to admit that I prefer hyper symptoms to hypo symptoms, even with the heart palpitations and the hair loss (not visible anywhere but I do have to draw in my eyebrows now, heh). But it’s a strain on your heart AND your bones. As much of a pain in the ass as hypo is, it’s actually not as dangerous to your overall health. And if you really can have RAI, it should take a little trial and error and then your TSH will level out and you will probably be on the same amount of synthroid for a very long time. You only get the horrible weight gain (due to a slowed down metabolism and the fact that you’re SO exhausted) once your levels are out of wack – so just keep them monitored and you should be set. I’m almost envious… I wish RAI were still an option. I still don’t fully understand why it’s not an option for me, but it’s not. 🙁 Good luck to you, whatever you choose! It’s a very common problem, and there’s really nothing to be scared of! 🙂
Post # 12
@LaylaBelle- I feel for you! I have Hashimoto’s, too, and I haaaate it. It sounds like we went through the same situation- misdiagnosed with Grave’s Disease, set up for RAI and then… “Oops!” While I was hyper, I was on beta blockers, then I became hypo and switched to Synthroid, and now I’m hyper again and pretty miserable.
When I’m hyperthyroid, I lose weight, have night sweats and hot flashes, and endure this awful shaky/weak feeling in my hands and feet. When I’m hypo, I feel tired and irritable. I haven’t gained any weight while hypo, despite my medications not being regulated properly. I wish I could settle it for good so that I could just feel normal for longer than a few days in a row!
Gamblina, I, too, was worried about RAI, but I’ve noticed that women who have had RAI or thyroid surgery and take synthroid to regain their thyroid hormone seem better-adjusted to this whole hyper/hypo situation than those who are up and down like me or suffering from one or the other.
But, that said, you don’t want to irradiate part of your thyroid if you don’t have to, or if your doctors aren’t 100% sure that your thyroid is not going to return to normal. My doctor was so sure I was strictly hyperthyroid, and I’m glad she decided to wait a few more months and test me again before going forward with RAI. The results were not what she expected. Even though synthroid is a tiny pill, RAI still means you have to take a medication every day for years, so make sure you need it before you go through with it. If you start to develop different symptoms, ask your doctor to test your thyroid again. Something may have changed.
Post # 13
@aynizapn – Ack! I’m glad someone knows what I’m going through!!! Even though it stinks that you have it too. 🙁
I’m in a hypo stage right now (TSH 10.6) but am having hyper symptoms (heart palps, night sweats, ‘roid hands, as I like to call them (shaky hands)!!! I can’t figure it out!! It’s the nastiest dang disorder!!
Post # 14
I kinda know about this b/c I see lots of people with this issue. What I’d say is to have first a fact finding mission and tell your doc you’d like (just a friendly suggestion) to have a nuclear medicine thyroid uptake and scan done. It’s totally painless and will let them see the size and shape and see how active it is. Also an ultrasound can let them also see the surface of the gland too and inside of it.
Based on those 2 things, he/she should have a good idea how to proceed. The people who’ve been treated I’ve seen have done really well btw!
Wish you love and health and happiness!