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in reply to: Chronic joint pain #1174025
You can still take calcium and iron while on Synthroid if your doctor prescribed either or both, but you need to wait at least four hours after taking your Synthroid before taking any supplements or Tums.
My endocrinologist said I can take my other medications – propranolol (beta blocker), loratadine (Claritin for seasonal allergies), and omeprazole (for GERD) 30-60 minutes after taking my Synthroid, but to take selenium and my multivitamin in the afternoon. I don’t remember to take anything when I’m at work, so I just take them before bed with my birth control pill.
As for your joint pain, I know I get that way when I am extremely hypo. I second the suggestion to get some labs done – TSH and T4 especially – even if you’ve had labs done in the last few months. You might need a different dose of Synthroid, or it might be something else altogether. What about your family’s history of osteoporosis? If you were on steroids, PPIs or anything else long-term that ups your risk of bone disease or if you are close to menopause, it might be worth getting a bone scan.
Hope you feel better soon!
in reply to: Loss of Taste and Smell After RAI? #1174003Please tell me you’re not reading the stop the thyroid madness website. That site is total bs. I “joined” (and then quickly unjoined) a hyperthyroidism/hypothyroidism group on another site that I use to log my calories and exercise, and those people will swear up and down by the stop the madness site. They will also tell you that people who are hypo should take diet pills, people who are overweight should take levothyroxine, and that anyone with Graves should never eat between 6 p.m. and 10 a.m. The point of that site is to sell their books, not to provide proven medical advice for people with thyroid disease. It really ticks me off, to be completely honest, especially since they recommend high-salt diets or taking products from a health food store instead of levothyroxine.
People who receive actual radiation in the form of radiotherapy/radiation therapy may have mild burning at the radiation site. Again, you aren’t being treated for cancer and you aren’t receiving radiation therapy.
Just goes to show that you can’t trust everything you read in the internet. I am truly not trying to convince you to get RAI, but I am trying to convince you that your doctor was not being careless or malicious by not telling you that you might burn your face off or stop tasting food if you take the RAI.
in reply to: Loss of Taste and Smell After RAI? #1174000I have never heard of losing smell or taste after RAI. I also was never informed of this risk but never experienced either – food tasted the same and my sense of smell was just as acute as it has always been. I did a quick Google search when I read your post and all I am seeing is cancer websites, so I’m assuming it has something to do with the dose of I-131 that cancer patients get, since our is much, much smaller.
in reply to: I don’ want to take my pill #1173939Hi Terri,
I gained about 30 pounds also, not from the anti-thyroid meds (I took PTU) but from being hypothyroid after RAI. It has been really difficult for me since I was a cheerleader and gymnast up until a few years ago and always in great shape at an ideal weight. However, it is slowly coming off as I get my levels regulated and watching calories very carefully.
At 5’9″ and 122, you are underweight (according to the NIH) To fear gaining a few pounds by taking a pill that could save your life, it sounds like you need to talk to a professional. I struggled with eating disorders and now enjoy food. I think one of the best people to speak with is a dietitian, and since most endocrinology offices employ nutritionists or dietitian for their diabetic patients, you can probably ask for an appointment regarding your fear of weight gain.
Bottom line: you NEED this medicine or a more permanent treatment (surgery or RAI) and have to find a way to let the weight gain be a temporary side effect until you’re well again.
in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173903Hi Caro,
Here’s the latest. The cardiologist listened to my heart and ran an EKG. Both came back normal, and he said my heart sounds strong (I think it beats too hard!). He was puzzled by the hypER symptoms despite looking at my last few sets of labs showing I’m clearly hypO.
As for heat intolerance, he at first wanted to attribute it to being overweight since RAI and becoming hypO. I told him that was a totally logical explanation, except I have been heat intolerant this whole time: when first diagnosed, on PTU, after RAI when I was between hypER and hypO (but never euthyroid) and not yet overweight, and then once hypO set in. He said propranolol can cause heat intolerance, but because he never prescribes propranolol for his patients, he has no first-hand experience with its side effects.
As for the palpitations, he said some people are just extra sensitive to their heartbeat.
As for the shortness of breath, he said that happens with propranolol sometimes.
As for the fact that I still need this stupid beta blocker two-and-half years after my diagnosis and 18 months post-RAI, he isn’t sure.
The plan: next weekend, I will wear a continuous Holter monitor for 48 hours to see if my heart does anything wonky. He also wants to see how low my heart rate gets when I sleep at night and when I exercise and, this is my favorite part, when I drink a glass of wine. I told him how I can’t drink a single glass of wine without my heart racing. So he told me to do everything I would normally do in a 48-hour weekend period, and that usually includes a glass of wine. I just hope no one can see my wires. I’ve been on cardiac telemetry for every hospitalization in recent years because of the Graves, so I’m no stranger to heart monitors, but then again, I was in a hospital gown and didn’t shower for several days. Ha!
If everything comes back normal, he said he will switch me to metoprolol or something else. He doesn’t like propranolol. He suggested increasing it to see if that helps but I begged him otherwise. I want to be able to come OFF the beta blocker completely, not rely on it more.
One good thing is that he said either way, he is almost certain that even if there is an abnormality, it’s not severe enough to postpone my OD. With my dad’s a-fib, he said it could be that and that’s an easy fix.
in reply to: methimazole and selenium #1173878Hi Federica,
I take selenium, but I take it for thyroid eye disease, not the Graves disease itself. My previous endocrinologist and my neuro-ophthalmologist were very supportive of me taking selenium (100mcg a day, now down to 50mcg a day), but it was never offered as an alternative to treating my Graves disease.
The study (http://www.nejm.org/doi/full/10.1056/nejmoa1012985) found that “selenium administration significantly improved quality of life, reduced ocular involvement, and slowed progression of the disease in patients with mild Graves’ orbitopathy.” Like Kimberly mentioned, the study was done in your country and my endocrinologist knew a few of the Italian researchers and lauded their work.
As Darcy said, selenium is found in a lot of foods we eat, so you may not need a high dose depending on your diet, but I was told it was safe for me to take up to 200mcg a day in supplement form because of my thyroid eye disease (TED).
Most of us here are in the US, UK and Canada, and I don’t think we get too many people from Italy. Is selenium common for Italian patients with Graves disease, even if they have no eye involvement?
in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173902Hi Caro,
Sorry, just saw this post. I am still taking the propranolol – 10 mg a day each morning. I have an appointment this afternoon with a cardiologist, actually an electrophysiology cardiologist to be exact. I plan to talk to him about my heart rate, and the fact that my endocrinologist says there is no reason why it still races or why I am still intolerant to heat, always sweaty and out of breath 18 months after RAI and now hypO. I know my heart rate has come down because when I was first diagnosed, I was taking 20mg every 8 hours. It really put me into a fog where I felt like I was slipping into unconsciousness, so they dropped me down to 10mg every 8 hours, and I continued on that dose for a little more than a year. After RAI, I cut back to 10mg in the morning and 10mg in the evening. I needed it or else I laid in bed at night with a racing heart, unable to sleep. I was able to wean myself off the evening dose, but still keep a few extras cut in half because if I have a glass of wine within two hours of trying to go to bed, my heart is racing too much to sleep, so I will take 5mg. That’s annoying, so I pretty much stopped drinking my once or twice weekly glass of wine.
I also had a really high LDL at my physical in January 2011. I have not had it checked since because of my move and lack of insurance for the first half of 2012. It will get checked at my pre-surgery physical in September, but I have a feeling the cardiologist will order labs for it today. My endo and PCP both attributed the high LDL to propranolol. Upon diagnosis, when they ran all sorts of labs to find out what was wrong with me (with a resting heart rate of 170bpm or so and dropping weight by the day), my LDL was 100 “points” (can’t remember the lingo) lower than it was exactly one year later. During that year, I was not able to exercise much but cut junk food out, did yoga and walked a lot, and took only the PTU, propranolol and birth control (Yaz) for acne. PTU is not known to increase LDL and neither is Yaz, and propranolol can, so my doctors told me not to worry about my LDL. My HDL was in the “great” category so none of it made sense to me, but they didn’t appear concerned.
I will certainly ask the cardiologist about all of my symptoms and everything you’ve mentioned. I’ll post an update this evening or next week. I’m heading out of town in the morning for a wedding in Mystic, CT, so I may not be around a computer until Monday. Thanks for sharing your beta blocker journey and I’ll let you know how the appointment goes!
in reply to: Hypo Might Raise TED Risk? #1173896I was planning on attending this year’s but it is exactly one month after my OD and I’m not sure how I’ll be by then. If I have a quick recovery and don’t blow through all my PTO at work, I’ll book a flight sometime in October. I’m also trying to find the funds for it. I have maxed out my health insurance every year since my diagnosis so it’s been tough, as many on here can probably relate.
Like beach, my RAI pill came in a crazy looking container (I think it was lead, which reminded me think of the only way Superman could be around kryptonite, and that made me feel like a superhero) but the tech just handed it to me and made sure I swallowed – it was a regular-size pill and there was no pain involved. The nuclear radiologist came in and talked to me but left the room before the tech brought the pill in. I had to wait 30 minutes in the waiting room before I could go home because they told me that was when a thyroid storm would happen, if it happened. Since it didn’t, I went to the Steak & Shake drive-thru for a milkshake and went home and got into my pajamas and my bed simply because I could…for three whole days.
VanIsleGal – let us know what happens with trying to get in to see a TED specialist. I also have never smoked and never had my antibodies tested (that I know of – maybe they were early on. My uptake and other labs spoke for themselves).
in reply to: Hypo Might Raise TED Risk? #1173891Shirley – no apologies needed. I knew what you meant and hope I didn’t offend either. Congrats on the new Mac…I’m jealous! You deserve it.
Beach – sometimes it’s exhausting to explain myself and explain Graves to people who don’t get it, even my primary care physicians. I’ve had several specialists tell me I seem to be well-educated on Graves and all things thyroid and TED. After 2 1/2 years of this, I would hope anyone in my shoes would be well-educated on their own disease but I guess there are plenty of idiots out there who chose to ignore their problems or take a single physician’s word as gospel. I have to credit this board for that. Sure, I can do my own research but I have a busy job and better things to do with my free time, and I learn a lot of evidence-based facts and “insider” tips right here in this forum. Let’s hope and pray that you never are in Shirley’s TED boat or even mine.
VanIsleGal – as you can see, there are lots of different opinions and experiences but you and your medical team know you best. So take our words into consideration, but don’t let our very personal and individual experiences sway any medical decisions you make.
in reply to: Hypo Might Raise TED Risk? #1173887I’m not an expert, just a patient who went through RAI. My uptake scan was done at my endocrinologist’s office. There is a nuclear medicine department within the office, since the facility houses internal medicine, endocrinology, rheumatology, infusion therapy, laboratory, physical therapy, sleep studies, and of course, radiology (under which nuclear medicine falls). So although you say this is highly unlikely, that was the case at this particular office. It was like a mini hospital. The only reason I couldn’t have my RAI there was because of my insurance – I worked for the hospital and my endocrinologist’s office was not affiliated with the hospital, although the physicians had practicing rights there (you as a nurse will understand this, others may not – semantics). As we know, medicine is practiced differently all over the country. I think you are the one who posted that your oculofacial surgeon ran all of your TED tests, when usually a neuro-ophthalmologist does that. In Florida, where the RAI was given, I had my choice between having it at my endo’s office or the hospital. There wasn’t much of a choice between paying out-of-pocket and letting insurance cover it, but it was a choice nonetheless. In Florida, I had a neuro-ophthalmologist. Here in MA, I do not. My TED is stable and in the cold phase, so my surgeon is handling all testing leading up to my OD.
My endocrinologist recommended 10 mCi to the nuclear radiologist. The radiologist refused to give me anything until he spent two hours reviewing my full medical history. It was frustrating and a long wait in the hospital, but I’m glad he reviewed everything before giving me the pill that would destroy my thyroid. Like you said, there was probably a bit of discussion between he and my endo during those multiple phone calls back and forth. My endo felt I only needed a small dose based on my uptake results, and the radiologist agreed in the end.
I don’t think I said anything about a standard of care for people with TED. I only gave my personal experience. I forgot to mention that I did take prednisone a few days before and after RAI to reduce the likelihood of a sudden TED onset, and it worked for that time period. My TED was very mild before RAI, and that’s why my team decided to proceed. I did not want surgery for a multitude of reasons, and remission via ATDs was not happening – we tried.
As I stated, there is no evidence that suggests being hypo caused me to develop moderate TED. Also as stated, I felt it did because the timing was simply just too close in my case. Again, I’m a patient and not a doctor, but I know my body. The same week I started feeling all those hypo symptoms was the same week my eyes swelled out of my head with extreme pain. I got labs done that week confirming hypo and also had an MRI that week confirming TED.
I’m offering VanIsleGal my personal experience as that’s the best I can do without being a physician. I know for me personally, this board has provided first-hand knowledge of Graves and related procedures and issues that my physicians can talk to me about, but not having lived it, they don’t always provide the entire scenario. For example, no one from the endo’s office or the hospital’s nuclear med dept ever told me to suck on hard candies after RAI, but multiple people on here did. It helped a lot. And no one from my surgeon’s office told me about sleeping with my head elevated after surgery, but I think it was you and someone else who did.
I didn’t think we needed to provide full disclosure in every post that we are speaking from experience rather than medical expertise, but here is that disclosure: I am speaking from experience rather than medical expertise.
I hope that Kimberly will provide the study she referenced in my post from last summer.
in reply to: Hypo Might Raise TED Risk? #1173883My TED went from mild (only noticeable to me and my specialists and immediate family members), to moderate the same week I went hypO six months after RAI. I posted on here that week, because I was scared and feeling awful. Kimberly told me:
Quote:Hello – There was a study done in 2005 out of the UK that concluded that for patients with minimally active TED, RAI was *not* associated with a worsening of symptoms *if* T4 was administered early to prevent hypothyroidism. To my knowledge, this study hasn’t been replicated, but it will be interesting to see if you receive other responses from people who have had this same experience.I was almost annoyed at first (since my endocrinologist never started me on T4 – why would he? I went from euthyroid/slightly hyper to seriously hypo within a week or two, no warning, very sudden) but later appreciated her comment. I think Bobbi chimed in that this research was never replicated or something to that effect. Either way, MY TED became quite bad the same week I went hypo. Whether or not the two were related…we’ll never know but I suspect they were.
I think your best bet is to see a neuro-ophthalmologist or an ophthalmologist who treats TED before you make a decision on RAI. Your endocrinologist should not be the one making decisions about your eyes. Pain and pressure can be just as serious as external swelling where TED is concerned. Your endo and ophthalmologist need to be in communication about your eyes and what, if anything, RAI could do. For me, the RAI had no effect on my eyes but the wacky thyroid levels did.
As for the RAI, I have a small dog who went to his sitter for a long weekend (Friday morning to Monday evening) as I had my RAI on a Friday afternoon. Can you do this instead of going to a hotel? Either way, it might be a nice getaway to spend a weekend on someone else’s maid service! But yes, you definitely don’t want your cats around you for a few days. Just send them to a sitter or nice boarding facility (I sweat – the place my dog is going this weekend while I’m at an out-of-state wedding is nicer than my hotel!). Or splurge and let them stay at home while you go to a swanky hotel.
What the patient probably meant is that your endo is good at determining how much RAI to administer in order to kill your thyroid…but I wouldn’t listen to other patients in that arena. It’s too vague. My endocrinologist’s office was licensed to administer nuclear medicine, including RAI. However, I was working for the hospital and my insurance required me to go to the hospital’s nuclear medicine department to take the pill. It is not uncommon for endocrinologists’ offices to administer the RAI, but I was under the impression that – if I had done it at the office – a nuclear medicine specialist would be the one actually handing me the pill, not my endo. Ablation is not really a procedure – it’s the act of taking a capsule of I-131 to destroy the thyroid tissue. By the way, I received 10 mCi (considered a small dose) and it did the trick. I am 18 months post-RAI and have no remaining thyroid tissue.
When you say you are in pain, are you referring to more than your eyes? RAI was painless for me except for the strep throat feeling that started on day two post-RAI and lasted about 36 hours. For that, I just took Tylenol and drank lots of broth, tea, and sucked on hard candies round-the-clock. No biggie at all.
I’m not at all familiar with how or if Graves reoccurs after RAI. I know this is some disagreement about whether or not we have Graves once we are treated, but I prefer to tell people I’m in the Graves club rather than the hypothyroid club to avoid as much judgement as it seems nowadays everyone likes the blame their laziness and obesity on “a thyroid problem.”
Good luck!
in reply to: I don’t think the Prednisone is working #1173208Someone on this board had radiotherapy for TED not too long ago. I want to say it was runbarb.
My neuro-ophthalmologist told me that if the oral prednisone didn’t provide relief, neither would radiotherapy. He didn’t go any further than that, and didn’t need to since the prednisone helped, but I would ask if you are even a candidate for it. It’s a drastic measure but if will help you, it’s worth considering.
in reply to: ~New Here~ RAI questions…. #1173825The isolation precautions are just that – precautions. Because we’re exposed to radiation in many forms over our lifetimes, the precautions are designed to limit your family members’ unnecessary exposure. You aren’t going to give them cancer if they come near you after RAI, unless maybe they have had 280 X-rays or MRI scans in the last five years and the RAI exposure is the last straw.
I had 10 mCi on a Friday, but the hospital refused to administer it until the nuclear radiologist had time to review my entire medical history. Apparently, I didn’t look sick enough for him. So it was late in the afternoon by the time I could actually go home. My dog was at the sitter for the weekend (he’s 18lbs and can’t be more than a foot away from me), but my boyfriend refused to leave me alone. I begged, pleaded, even kicked and screamed and told him I didn’t want him there, simply because I didn’t think it was worth the risk. He thought it was – he was worried about me having a reaction or just being lonely. Now he’s an ex and I’m pretty sure he doesn’t have thyroid cancer. If I found out someday that he does, I might feel a little bad, but it was his decision to be around me while I radiated all over my apartment.
Because I had such a small dose and was so hyper (I think my uptake scan came back in the upper 80s or 90s – it was 2 1/2 years ago now), I’m pretty sure he actually received very little exposure. I called the nuclear medicine tech over the weekend and asked if I needed to take Monday off since I was told 72 hours of isolation but I received my dose around 4 p.m. on a Friday. She said I was fine to go back to work, but I sat out of our morning staff meeting since we all crowd around a conference table. I ate lunch alone and didn’t pick my dog up until after work that evening. Everyone at work is healthy, my dog is healthy, I could care less about the now-ex, and the RAI finally worked after 22 weeks.
I did not experience itchiness. I did have the sore throat many others experience – it felt like strep for two days. I sucked on hard candies and drank a lot of water to flush my system, and did feel very hyper by Monday evening. I went back on the PTU for a few months, never stopped the propranolol (still haven’t 18 months later), and was told to go to the ER if my resting heart rate ever reached 120bpm. It did once, about a week after RAI, but I simply took an additional 10mg of propranolol and was fine.
Like you, I also had minor TED when I did the RAI and took a round of prednisone starting before and ending a few days after RAI. I ended up developing moderate TED the same week that I finally went hypo, so my physicians and surgeon attribute the TED to my TSH skyrocketing, not to the RAI itself.
I’m still struggling to find the right dose of Synthroid, but my endocrinologist confirmed that I have no remaining thyroid tissue – which is good because I had a nodule/cyst/tumor on the left lobe that actually sent me to the ER two months after RAI when I could no longer swallow. As my thyroid died, so did the mass.
Glad to hear you’re on the road to recovery. Let us know what the itching turns out to be.
in reply to: I don’t think the Prednisone is working #1173205If I’m not mistaken, an MRI really tells the tale of hot phase (active) vs. cold phase (inactive). At least that is what has been used in monitoring my TED. I had an MRI at the onset of moderate TED. As you know, a neuro-ophthalmologist or an ophthalmologist trained in TED can diagnose TED most times simply by looking at our eyes. They usually want to look at our labs as well, because major swings can affect our eyes.
So when TED reared its ugly head in my life, I had an MRI within a few weeks. They also did a test – I completely forget what it was called – where they looked at the backs of my eyes…? It was done in the neuro-ophthalmologist’s office so I know it was legitimate. The MRI showed significant swelling in the orbit, so I started prednisone. It helped immediately, and I taped down by a few milligrams every three weeks. The symptoms never returned. My neuro-ophthalmologist told me I was in the cold phase when I finally finished the prednisone and there was no return of symptoms. Since MRIs are incredibly expensive even with insurance, he wanted to wait a full 12 months between scans to see what the difference was.
Now that I am preparing for OD, I had that 12-month followup MRI last month. I am no longer seeing the neuro-ophthalmologist because I moved from FL to MA and there are no neuro-ops on my side of the state. The OD surgeon is handling all the tests, and the MRI showed significant improvement and according to my surgeon, “confirmed” that my TED is in the cold phase and we are OK to proceed with OD in September.
Were you offered prisms or a patch for your double vision? I know that must be terrible and it’s a very real (50/50) reality for me after the OD, so I’m curious to see how yours will be handled.
Who is this muscle specialist you’re seeing? I know Shirley has mentioned her strabismus surgery(ies) was performed by a pediatric surgeon. Is that who you’re seeing?
You really don’t want to insist on surgery while your eyes are still changing unless you are about to lose your vision – and a visual field test and an MRI can determine that. You can ask for accommodations to help preserve your vision.
in reply to: ~~ HypoT Symptoms ~~ #1173448Caro,
I always felt energized before Graves. But I have noticed that I feel tired when I’m hypER or hypO. Tired hypER because my body was running at 150% and it was wearing me out. I wasn’t sleeping well, but I was always tired. Basically if you look at a list of possible Graves disease/hyperthyroidism symptoms on a medical website, I had every single one of them for about six months leading up to my diagnosis.
Ever since I’ve been hypO, I have been tired but can sleep ridiculous amounts, and sleep well. I compare it to how I feel when I have a bad cold or the flu – when I can sleep all day, wake up to take a shower and eat some soup around dinnertime, and then go back to bed for another 8-10 hours with no problems sleeping. That’s how I feel all the time lately being hypO. In between hypER and hypO, when I was somewhat regulated on PTU and then after RAI while I was slowing falling from hypER to euthyroid and eventually hypO, I felt great. I had energy, was working out really hard five days a week with a personal trainer, and getting maybe 6-7 hours of sleep a night, but it was good, sound sleep.
My other hypO symptoms were significant weight gain, heavier periods, but unfortunately, no cold intolerance – like you I am always hot and was really looking forward to feeling cold for once, but no such luck. I also felt weak, but in a different way than I did when I was diagnosed. I guess a lot of the symptoms are similar, but opposite. Does that make sense? Probably not, but it’s been a long day on little sleep – I blame the late-night Olympics coverage.
Fatigue can be caused by any number of things. We are quick to blame every symptom on Graves, especially in the beginning. See what your labs say. If you are on either side of normal, fatigue is to be expected. But if your labs are normal and fatigue is your only out-of-the-ordinary thing going on, you might see your primary care physician to rule out other issues. Try some light yoga, meditation, soothing music before bed. You can research sleep pollution – things like electronics in your bedroom, light filtering in the windows, doing anything that stimulates the brain or digestive system within a few hours of going to bed, etc.
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