Forum Replies Created
-
AuthorPosts
-
in reply to: thyroid support boards #1171466
Hi Matthew,
I can’t give you any insight on being a male with Graves as I’m a 27-year-old female, but I wanted to let you know that I also chose to move when the heat + Graves became too much to bear. I left Florida in February and when we had one freak day last month when it was 92F, I felt terrible. My Graves is under control but the heat intolerance is not. People couldn’t believe I was moving because I was too hot, but when you have Graves, hot weather doesn’t feel good anymore. Good luck, and get to somewhere with seasons!
Oh, and don’t jump to conclusions about cancer and lymph nodes. I had two tumor scares and trust me, it’s not worth stressing over until you have the appropriate test results. Both of mine came back normal, but the first time I actually went to a lawyer to have a will drawn up…at 26!
in reply to: First Appointment with Oculofacial Surgeon #1171411Well, fortunately my own set of questions worked. And, I didn’t even need to ask most of them because this surgeon is – there’s no other way to describe him – cool. He does several hundred every year and understood exactly why I was there the minute he looked at me. He didn’t brush me off like most people and even most physicians. He realized my concerns were valid. After an extensive discussion about my history (and his second look at my medical records from my endocrinologist and neuro-opthamologist), he told me he wanted me to have one more MRI before he made a decision about the timing. He did said I definitely needed the OD and probably a lid retraction and maybe strabismus (even though I’ve never had double vision, it can happen after OD – I didn’t know that). He said I have excellent muscle strength and range in my eyes which makes side effects less likely.
I had an MRI with contrast in July when my symptoms were at their worst, and I’m having another one tonight. I have a visual field test (at which I’m becoming an expert) and then I see him in one month. As long as my MRI shows significant improvement since July – which I know it will because I went from 10 on a scale of pain and swelling to a 1 – we will begin the prep. I have to wait until at least July for my vacation time to kick in. There is a chance he will have me wait until October, which will be one year since I completed the long round of prednisone, to ensure the TED is inactive. Speaking of prednisone…
The best part? After asking how I handled prednisone, he promised I would not need to go back on it. He said the acne, weight gain and tachycardia outweigh the possible benefits of prednisone. Since I was on it for so long and only saw so much improvement, it was highly unlikely I’d see any additional improvement by going back on. Hallelujah!
I cried a little at the beginning of the appointment when he validated my concerns about aesthetics and how my eyes are the focal point of my face. I never cry, so it felt good to finally cry about something “as shallow as how I look.” He took some photos and asked me to bring pictures of myself before Graves and TED to my next appointment and promised to get me as close as possible to how I used to look.
We didn’t discuss the specifics of surgery. I chose not to, because I don’t want to get all prepared and emotionally ready, and then find out I need to wait a few more months. He will do both at the same time, and said he wait three months after OD before doing for the lid retraction…and strabismus if and when I need it.
He mentioned that I seemed extremely educated and had clearly done my homework about Graves, TED and OD. I didn’t mention this board, but it’s been a huge chunk of the educational portion, and the human element makes it that much more trustworthy. Thanks all! I will keep everyone updated on the surgery process.
I’m also interested in this topic. Which of the side effects you mentioned are permanent? And if they are only temporary, how long do they typically last?
I’m not naive, so I realize with any surgery there could be permanent complications – albeit serious or minor – but alsha asks a good question about which ones most of can expect after surgery.
Also, I’m pretty sure the constipation comes from the anesthesia and painkillers and is not directly related to the actual surgery…am I correct? Painkillers and I don’t get along well, so I plan on asking for a prescription-strength laxative to be filled along with my painkiller script. I have read from several of you not to try and be brave by avoiding painkillers and this is probably the one time I’ll actually want them and be willing to handle the side effects.
in reply to: Palpitations and Hyperactivity after RAI? #1171390I think your endocrinologist chose the perfect word: uncomfortable. That’s how I felt when I had to stop the PTU before RAI. I think I was off it for two weeks, but I’m not entirely sure. My boyfriend noticed it before I really did – he commented that I looked visibly more thin than in recent days. He was right. While that was music to my ears, I knew it was temporary and not the good kind of weight loss. The rest of the symptoms were uncomfortable – minor tremors, fatigue, and palpitations and tachycardia. Nothing major and not anything like how I felt before diagnosis (I was so sick leading up to my diagnosis that I dropped almost 20 pounds and my resting heart rate was close to 200 for two days straight).
Unfortunately, I’ve never been able to come off the beta blockers. We don’t know if it’s thyroid-related or just a coincidence but I’ve been steady on Synthroid since August 2011 and yet my heart rate refuses to come down on its own. Tachycardia runs in my family so that’s probably all it is, but I definitely needed an extra beta blocker every day for about three weeks after RAI. I’ve been on 10mg propranolol daily since then.
You’re probably also psyching yourself out a bit. I certainly did. Look at it as a weekend to yourself with no commitments, instead of focusing on how you might feel off the ATDs at first.
in reply to: Finally good numbers after 5+ years treatment #1170870Please, please, please – never take anything from Suite101 or About as fact or even credible opinons. Joe Schmoe can write anything he wants on those sites and call himself an author. The same goes for Wikipedia. Open content is great for certain industries, but health care/medical research is not one of them.
in reply to: Finally good numbers after 5+ years treatment #1170863Hi Harpy,
I just have to disagree with you on a few points. You are entitled to your own opinion, but the two points below are just that – your opinions. They are not facts and I just want to make sure others realize that.
Quote:My reason for this is because of all the associated symptoms, like the rage, mental fog & erratic fears that I believe makes it impossible for anyone to make a truly informed decision on Surgery or RAI…I did not experience any of the above and I highly doubt I’m the only one. I was born with rage in my blood (also known as being a Massachusetts resident/Ma**hole), but never developed Graves rage, brain fog or any irrational fears. I made my decision to go for RAI after 12 months on ATDs while still very hyper, and that was longer than my endocrinologist wanted me to wait. Many people can and do make sound, rational and well thought-out treatment decisions while hyperthyroid.
Quote:…her old carefree party life, my response was, it was that life which put you here & if you are not prepared to change that, then you will be back here…Do you have any research to support that? I have never once heard from any of my specialists that an unhealthy lifestyle caused me to get Graves or that returning to an unhealthy lifestyle would cause a recurrence. I was 25 at diagnosis. I had done my fair share of “partying” in college in recent years (no, I did not even try drugs), ate junk food and went days without exercising, but that’s not why I developed Graves’ disease.
With that said, I’m glad we’re discussing things on this board instead of taking someone’s opinion as fact. I love open discussions and intellectual conversations, especially about something as personal and important to me as Graves. Glad your partner is feeling better.
-K
in reply to: diagnosed with Graves Disease Today..4-20-12 #1171303Hi Vinny,
I’m also curious about the “no sun activity” comment. I was living in Florida when I was diagnosed, and my endocrinologist never one mentioned the sun. I certainly didn’t want to spend any time outside in Florida because of my heat intolerance, but it was never even brought up in any appointment. Then again, I took PTU not methimazole so maybe that’s the difference? I would ask him why you can’t be out it in the sun for the next six weeks. I’m a firm believer that the sun, fresh air and vitamin D work wonders for our bodies and minds…with sunscreen, of course.
in reply to: Possible relapse but bloods only just off #1170935B,
Fortunately, I never had to deal with BS from my endo. However, shortly after RAI I developed all sorts of GI issues. I got a referral to a gastroenterologist my endo suggested, and he tried to tell me my stomach pains, chest/neck tightness, and regurgitation after meals were all anxiety. I am a pretty high strung, type A person (hence the Graves), but I never once suspected anxiety. Sure enough, I asked to switch to a different doctor within the practice, and he diagnosed me with severe GERD, a duodenal ulcer and a constricted esophagus – all issues that run in my family (except the ulcer…I just have a predisposition to them, apparently).
Maybe you do have anxiety, but I would highly recommend finding a new doctor who will actually help you instead of simply telling you to find a psychiatrist for something you feel is related to your thyroid. Labs don’t always paint the whole picture. You’re a human, not a lab specimen.
Feel better.
People like to spread horror stories of RAI, but I’m living proof that it can work without any major side effects.
I had my RAI in February 2011, so a little more than a year ago. I sent my dog to the sitter’s for a long weekend (took the pill on a Friday morning) and planned to spend the weekend in isolation. The radiologist didn’t feel comfortable giving me such a life-changing pill without personally reviewing all of my medical history, so I had to sit in the waiting room for two hours while my endocrinologist (who had hospital privileges but was not employed by them) faxed everything over. I signed a lot of papers about how this was permanent and about not exposing others to unnecessary radiation, and finally I took the pill. I sat in the waiting for 30 minutes because the nuclear medicine tech said if some crazy thyroid storm was going to happen, it’d happen within 30 minutes of taking the pill. Nothing happened, so I drove home and got into bed simply because I had the rare luxury of three whole days with no outside commitments. You can read my posts about it (just click on name then click on posts) but I think the first day was fine until the middle of the night when my throat started to hurt. By the second night, the pain was pretty bad. I also developed a pretty bad cold because my endocrinologist wanted me on steroids to prevent any immediate eye symptoms, and the prednisone kicked my immune system in the rear end. Sitting in the hospital for three hours exposed me to all sorts of pretty germs, so I don’t think the cold had anything to do with the RAI.
It took me longer than most – 22 weeks/six whole months – to go hypo. I worried that because my RAI was such a small dose (10 mCi), that I would have to go for another round. I was only hypo for about a week and started Synthroid right away. I’ve had to keep dropping my dose from 125 to 100 to 75 and now I alternate between 50 mcg and 75 mcg every other day. We’ll see where my levels are in a few weeks when I see an endocrinologist for the first time in four months (moving and not having insurance for two months was not fun).
All in all, I’m glad I chose RAI. I was pretty heavily leaning toward surgery but the surgeon encouraged me to consider RAI because of a number of factors – I was only 26, I get keloid scars, I wouldn’t have much time off from work, etc.
Staying on ATDs long-term was never going to be an option for me. I was on them for one year (PTU) and remission was just not going to happen and I was pretty sick for that entire year. We kept putting RAI off because of other reasons – switching jobs, travel, strep and pink eye within six weeks of each other (thanks to the second graders in my CCD class), and a neck injury for which I had to take prednisone – and your body can only handle so much prednisone.
Good luck. It sounds like you made the right decision for you.
Despite what your doctors told you, I would play it safe around pets and people. As others have mentioned here, we limit our exposure to others after RAI because the radiation we’re exposed to over a lifetime builds up. I would never put anyone at risk, especially something as helpless as a pet. If adults in your life don’t care about their personal risk, by all means ignore the precautions. My boyfriend at the time refused to leave me alone during that 72-hour period and I accepted his stubbornness, but I made sure to send my dog to the sitter for a long weekend and take Friday and Monday off from work – and I only received 10 mCi. We’ve since broken up and I have never been able to rid myself of the thought that he might one day develop cancer because of his stupidity over a girl at 26. Had my parents been in the state during this, they probably would have also ignored the precautions to make sure I was OK, but I wouldn’t have let anyone near me without them fully understanding their risk. Bobbi was the one to tell me back then that I didn’t need to send my dog away for the weekend, but he is a cuddler so I felt it best in the long run.
in reply to: Muscle cramps – Ouch #1171212I had pretty bad muscle cramps and my endocrinologist said it was from the PTU. Sure enough, once I had RAI and stopped the PTU for good, the pain went away. At 27, I feel like I’m trapped inside an 80-year-old’s body but now that I’m off the PTU, that probably has more to do with my former life as a gymnast than it does with Graves.
I echo the comments Bobbi and Kimberly made. My endocrinologist is amazing but he isn’t a radiologist, so he wasn’t the one who could explain RAI to me in great detail. When I got to the hospital to swallow the pill, both the nuclear medicine technologist and radiologist explained the implications and 72-hour restrictions to me in great detail. I actually called a few times during the weeks preceding my appointment to make sure my endocrinologist gave me all the right “preparation” restrictions (for me, there were none) and they were very understanding of my questions and concerns. If you’ve scheduled your RAI, go ahead and contact them – I’m sure they’ll be very helpful. Nuclear medicine is a totally different department than endocrinology or even radiology and I think the staff are used to patients’ concerns.
in reply to: RAI Questions #1170422Lisa,
I had very minimal eye involvement before the TED. However, neither my endocrinologist, neuro-ophthalmologist or the hospital radiologist think RAI made my symptoms suddenly severe. Personally, the timing seems to fit as if being hypo brought on the severity, since hypo and sudden moderate TED symptoms happened within the same week. Again, I do NOT regret my decision to have RAI. Like Bobbi said, since you have no eye symptoms, your eyes should not factor into your decision.
in reply to: Graves Opthalmopathy #1072659Melissa and others:
Ask your endocrinologist and neuro-ophthalmologist about selenium. It helped my TED a great deal after I completed a brutal round of steroids. It is found in Brazil nuts (which are high in fat) or can be taken via supplement. My endocrinologist knew the Italian researchers who conducted the most recent study of selenium’s affect on TED, and he and my neuro-ophthalmologist fully supported me using it. I started with 200mcg a day, and am now down to 50mcg per day and have not needed steroids since I finished them in October.
My moderate TED developed in July 2011, and I am already told I could be a candidate for surgery in the next few months. I see my neuro-ophthalmologist at the end of April and will know more then but I haven’t had pain, pressure or double vision since before the steroids. July 2011-now: I know this is much shorter than the normal “hot phase” so I wonder if the selenium helped speed the process along…? Don’t take anything without informing your specialists (and your PCP, if you see one) about all your medications and conditions, but selenium is found in many foods anyway. It’s just the extra “oomph” my eyes got from the supplements that seemed to make the difference.
in reply to: Terrified or orbital decommpression help! #1170744Hi Jennifer,
I kind of understand where you’re coming from. I’m 27 and have dealt with Graves since 2009. I developed moderate TED at almost exactly the same time I become hypo post-RAI, which was in July 2011. I was immediately put on a very high dose of prednisone and noticed relief the very next day. I had no more pain and that feeling you felt when you pressed on your eyes compared to your doctor’s eyes, that changed pretty significantly over the course of a few weeks. My dose was tapered every six weeks or so until I was finally done with the steroids in October.
I have not needed them again since. Thank goodness, because my body did not handle them well. I developed terrible acne along my jaw line that persists to this day despite being on Epiduo since December; I gained 15lbs that I have since lost but it caused permanent stretch marks on my “love handles.” However, the prednisone saved my vision and saved me from emergency OD surgery. Now I get to have the surgery on my time. I just moved from FL to MA, but my neuro-op thought that within a couple of months I’ll be a good candidate for OD. I’ll be sure to ask about the antibodies. I will also need lid surgeries as my eyes are currently asymmetrical and my lids are retracted and droopy.
Please keep us updated with your TED and plans for OD. Good luck!
Kelly
-
AuthorPosts
