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in reply to: RAI – my journey #1174286
My sore throat was worst on Day 3 after RAI, too. I do know that humidity levels can wreak havoc on my throat even now, 18 months after RAI, so I use a warm air humidifier in my old New England colonial when I sleep at night.
Make sure you have a letter from your doctor or the hospital because radiation detectors at airports are very sensitive.
in reply to: Difficulty breathing and loosing voice #1174295I second the recommendation Kells made.
I assumed my throat/chest pain and difficult swallowing (a year after my Graves diagnosis and two months after RAI) was thyroid-related. It turned out I had developed severe GERD (acid reflux) and a constricted esophagus. Both my endocrinologist and gastroenterologist attributed my sudden GI issues to my fluctuating thyroid hormone levels. I have not heard a lot about it on here, but both physicians told me patients develop GI issues when their thyroids are not controlled for a long period of time. Fortunately, reflux is easy to treat with PPIs like Prilosec or Nexium. It might be worth seeing your endo as well as your primary care physician to rule out any GI issues.
We tend to attribute any new symptom to Graves, when sometimes it is completely unrelated, or related but not a direct thyroid issue.
in reply to: First Normal Labs Since RAI #1174250I sure hope it’s not a year before I feel like myself again (thyroid-wise). I will see how I feel after surgery and determine if I can wait two months for labs.
Shirley – nothing but rest, ice, and painkillers…the latter of which I am not crazy about because I’ll be on them for at least a few days after my OD. I have a special coccyx cushion (they no longer use the doughnut cushion) but it is painful to sit or bend at all, let alone sit all day at work. So sorry to hear you are still feeling lousy. We are a sorry pair!
Unfortunately, with my OD exactly one month before the conference in San Diego, I don’t think I can hack it. Even if I’m fully recovered by then (wishful thinking), I won’t have any extra time off to use as our time off calendar is from July 1-June 30 and I have at least one, if not two, more eye surgeries up ahead in the next nine months.
in reply to: First Normal Labs Since RAI #1174246Thanks for all the support and responses. Bobbi, I guess I didn’t realize that – or I did, but didn’t think of it. I think I’ll wait the six weeks and if I feel OK (realizing I may still be laid up from OD), I’ll wait it out another few weeks. I won’t go longer than two months without having labs drawn. I’ll determine if a new endo is the right decision based on how my current endo handles the next set of labs, especially if they are “within normal range” but I don’t feel right.
VanIsleGal – the US is definitely slow in getting another done in the medical world, but my hospital/physicians/labs are all on different electronic health record systems, so nothing gets from one office to another without several faxes and phone calls. It’s annoying but considering how good my insurance is and that I pay nothing for labs, I can’t complain.
Carito – my plan is definitely to start working with my primary care physician once I am settled on a dose. I see her Friday for my pre-op physical, so I will mention this to her then.
Beach – unfortunately, my previous endo is in Florida. The only reason I no longer see him is because I moved to MA and he’s 1,500 miles away…and even if I did have labs sent to him and he oversaw my symptoms and dosage via phone/email (which he offered to do when I first moved and didn’t have insurance or an endo yet), my insurance would not cover it. I live paycheck to paycheck so I am limited to two endocrinology practices covered by my insurance within reasonable driving distance – my current endo and an endo practice within my primary care physician’s medical practice. That may be the route I go.
On an unrelated note, I fell down the stairs Saturday morning and thought it was no big deal until the pain became increasingly worse. I went to the doctor Monday afternoon and found out my coccyx (tailbone) is fractured in two places. One complete fracture, one large crack. I have been in bed on Percocet since then – not how I wanted to spend the two weeks before OD!
in reply to: UPPER EYELID SURGERY TODAY #1174181Good luck, Shirley. I know you will do fine. I just hope this surgery brings you some relief – you deserve it.
in reply to: Well, here goes! #1173495Ha. I have mentioned on here before that I know several people in my profession (in-house PR) who have Graves, so it’s becoming a common theme. Now I also know three people, myself included, who have both a red-eared slider and Graves. While Graves is usually attributed to stress and genetics, I wonder if our turtles have anything to do with it?
Just kidding, of course. I agree with Kimberly that it’s nice to have light-hearted conversations on here every now and then.
in reply to: Well, here goes! #1173483First of all, I think it is quite common for your doctor’s office not to give you any information on the isolation precautions – many people on here have had that experience. Most patients don’t get recommendations from their doctors (because they aren’t the ones administering the RAI) but from the nuclear medicine department, and usually from the tech as opposed to the radiologist. Because I’m an obsessive planner, I called the nuclear medicine department as soon as my RAI was scheduled so that I could ask the tech all about the precautions. She repeated them, in greater detail, when I arrived to the hospital the day I took the RAI.
I had RAI on a Friday afternoon, and was told it was fine to go back into work Monday morning. You should be fine for your carpool – remember, radiation precautions are because radiation accumulates over a lifetime. If one of your co-worker has had a dozen X-rays, the radiation your body will be emitting by Friday will not make a difference whatsoever. For the others, it will be so minimal that it isn’t going to give them any additional risk of cancer or leukemia.
Kimberly has posted about there not being any diet restrictions once we are no longer hyper.
I live alone, and did not wear gloves or anything like that, and all I did was a good cleaning of my apartment on Monday evening, but moreso because I’m a clean freak than because of the radiation. A hazmat suit is absolutely not necessary otherwise you would not be allowed to leave the hospital and would be placed in an isolation room. Remember, the dose you are receiving is incredibly small compared to what thyroid cancer patients get (50-200 mCi). What you are describing sounds really excessive to me, and may only make your anxieties about RAI worse. You don’t need sheets, plastic bags, etc. You also don’t need more than one shower a day. I was told to flush twice, and that drinking a lot of water would help flush out the excess radiation, so I made sure to stay hydrated. No special foods other than the hard candies for sore throat.
My dog came home Monday after work. He is in tip top shape 18 months later. Cats are prone to hypERthyroidism, so I would ask your vet whether or not he needs extra time away from you. Again, this is all a lifetime exposure risk we are trying to minimize.
I really don’t want you to panic and make this a huge ordeal for yourself, but if you would help you rest easier by covering your home in plastic, go for it. However, if it provided any benefit, I really think everyone who chose RAI would have been told to do so by the nuclear medicine department, but we were not.
I completely understand why you’re anxious about this without your uptake results. My understanding is that the uptake results come into play as to how much I-131 you need. My radiologist and endocrinologist worked for separate health care systems so my records were not transferred, and the radiologist refused to give me the pill until he got copies of my entire medical record and felt comfortable with the dose my endo had recommended. So I’m sure your radiologist will have copies of your uptake results, and if not, will request them on Tuesday.
You’re going to be fine. RAI is safe for you and others you will come into contact with after those first 72 hours, otherwise millions of people would not have undergone this treatment method. I had serious anxieties about it, too, but mine were about the permanent death of my thyroid rather than the radiation exposure.
I wasn’t going to mention this, but I think I should. My boyfriend (at the time), refused to leave me alone that weekend. He knew the risks, saw all the paperwork I was given, and listened to me beg for days ahead of time and then for hours when he showed up after I came home from taking the pill. In the end, I gave up fighting because I realized I wasn’t going to win and was so appreciative of him putting himself at risk to make sure I was OK that weekend. I wouldn’t recommend anyone be that good of a boyfriend, but he remains healthy and well to this day. I’m glad he chose to spend the weekend with me because it was an emotional few days for me.
in reply to: Dependent on Hormone Pills #1174118VanIsleGal,
I never had fears of the medication not being available, but I’m a brat, so I was annoyed by the fact that I would be inconvenienced having to take my Synthroid before other medications, four hours apart from vitamins and Tums (I had all sorts of GI issues that began a few months before before I started Synthroid), etc.
I have found that putting the next day’s pill on my nightstand with a glass of water makes it very easy. My body naturally wakes me up around 4-5 a.m. on weekdays and 7 a.m. on weekends. When this happens, I reach over, take the pill and a sip of water (not the full glass they recommend), and go back to sleep. Most mornings, I am so asleep when this happens that when I fully wake up, I am surprised when I look over and see the pill is missing. It has become very easy for me to take my Synthroid apart from my other medications. I now take my vitamins and selenium supplement in the evening before bed, and because I take the Synthroid so early, by the time I need Tums (if I need Tums) after breakfast or coffee, it’s usually been four hours or very close to it.
So yes, it may be a little annoying at first, but once it becomes part of your daily routine and you get into the mindset that this tiny little pill makes you feel much better than you’d feel without it, it becomes second nature and you hardly think about it.
Hope this helps!
Just want to add that I also gained about 30lbs from diagnosis to now (18 months post RAI). Granted, my normal weight is only about 25lbs away, and I lost those extra 5 when I was very hyper, but it’s been a constant struggle. I track my calories, aiming for 1,200 a day including calories burned with exercise (I usually burn 350-500 during workouts), and limiting alcohol to one drink a week. I try to eat real foods – meaning as little processed crap as possible but of course I have my weaknesses.
I am still hypo and we keep upping my Synthroid dose and my endo keeps telling me the weight will come off once I’m euthyroid. I don’t know…I was there for a short period of time and only was a few pounds lighter.
I know there are a LOT of people who struggle immensely with weight after treatment. For me, being hyper honestly felt better. I was a gymnast and competitive cheerleader so being overweight has taken a huge toll on my self-esteem and social life.
in reply to: * Does anyone take Metoprolol ER? * #1174048Caro,
This doesn’t answer your question but I am on omeprazole for GERD, an it is an ER. However, it’s scored. I buy 20mg (the smallest dose you can buy OTC, which for a while was cheaper than getting it through a prescription) but have successfully weaned down to 10mg with my gastroenterologist’s approval, so I simply cut the pills in half. I highly recommend a pill cutter. You can get one at Target or any drugstore or mass retailer for less than $5. Most now have a safety feature so the blade is covered until it cuts the pill, and the pills remain in a small compartment so you don’t have to worry about them falling into the wrong hands or mouths. And it makes a perfect cut without much lining up. Or, as a last resort, you could use a sharp knife so that you can make a better cut without losing any little pieces.
in reply to: New to the board but not to Graves! #1174061Hi Kiersten,
I’m 27, and have had Graves since I was 25. I work with college kids, and was one myself not too long ago, so I completely understand how you feel. Believe me, it doesn’t get any easier having Graves and thyroid eye disease (TED) as you age. Although I can’t imagine going through it so young and for that, I applaud your positive attitude. I am having orbital decompression – the surgery I think you are asking about – in less than a month. I plan to document my experience through my blog and update on here as often as I can. Feel free to follow my journey.
I’m also struggling with my Synthroid dosing (I had RAI instead of a thyroidectomy). I don’t have hot flashes per say, but I am always hot and sweaty, even in the winter or when I have the AC blasting in my bedroom. I used to always be cold before Graves.
I recommend you talk to your parents about seeing a neuro-ophthalmologist or at least an ophthalmologist who treats thyroid eye disease. They can do some baseline tests so you can measure any changes in your vision or the bulging. They can also tell you if you are a good candidate for the surgery if your eyes are done changing. Most people think my eyes are large and pretty, but those who knew me before TED know my eyes used to be tiny and very deep-set. The bulging hurts, has completely changed the way my entire face looks, and causes me to avoid eye contact with strangers. Just so you know, orbital decompression is NOT a cosmetic procedure (insurance companies cover it) and TED is NOT a cosmetic issue – it is a real medical condition.
It’s so funny (well, not funny, but “funny”) that you say you want your old eyes back. That’s ALL I’ve been saying for the last year. I have a countdown on my phone that “XX days until I get my old eyes back” with a photo of me from three years ago that my surgeons are using as a guide during the operation. Today, the number is 27 (surgery is Sept. 25).
If you’d like, I can send you a link to my blog that mostly revolves around my journey with Graves and will have lots of details and photos of my upcoming surgery and recovery.
Kelly
Hi Amy,
I was on PTU for a year, and you’re right – it tastes awful! I took mine with milk or (once I was finally cleared for caffeine and exercise) coffee and would take a sip, put the pill in my mouth, swallow, and quickly take another sip. If I only had water, I would hold it between my upper and lower front teeth until I took a sip of water to swallow.
My endo said my muscle cramps were caused by the PTU. I stopped taking it for a short period before RAI, and felt fine, but I went back on the PTU for a few months after RAI and the pain/cramps came back. It was a minor side effect for me, but for some it can be debilitating. Just try to think of it as a hoop to jump through in order to be healthy again.
Do mention the cramping to your doctor. Are you supposed to be exercising? I know I could not for several months due to Graves affecting my heart. Feel better!
in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173912Thanks, Bobbi. I do know all of that already
Yes, the palpitations are annoying but they are just that – an awareness of one’s heartbeat. What concerns me is the heat intolerance and increased heart rate when I am just sitting around – both of which my endo and cardiologist agree cannot be caused (currently) by an overactive thyroid because my thyroid is no longer overactive.My ultimate goal is to come off all beta blockers completely, but I would never stop taking any medication with a physician’s recommendation. I was originally on 10mg three times a day, so I have been “weaning off” for years now without being able to quit them entirely. Hopefully the test results can explain why.
in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173909I’m glad to know I’m not the only one. I think you are right in that although no visible or identifiable damage was done to my heart during my undiagnosed period of Graves, my body learned some bad habits. For example, being hypersensitive (aka palpitations) to my heartbeat. Sometimes I think it’s racing, and then I check it, and it’s normal but it feels uncomfortable.
I hope switching from propranolol to something else helps.
Also, interestingly enough, caffeine has no ill effect on my heart rate. granted, I take my beta blocker before breakfast, and breakfast is the only time I drink coffee. I don’t drink soda and allow myself dark chocolate only a few times a week, so almost 100% of my caffeine consumption is in very close proximity to taking the beta blocker. Exercise also does not cause dangerous spikes. I checked my heart rate just after I peddled up a steep hill last night and it was only 145. During more intense cardio, it gets up to 155-160, which is fine given my age (27), but I never feel uncomfortable when exercising hardcore. The worst is after a single glass of wine (which I never drink on an empty stomach) or during those random periods like Monday night when it spikes for no reason.
My cardiologist is an electrophysiologist as well. I look forward to hearing the results of my Holter. Thanks for sharing!
in reply to: ~ gatorgirly please come in … Propranolol ~~ #1173907I guess my cardiologist and I were not on the same page about the Holter monitor. He told me to do what I would normally do in a 48-hour period on the weekend. OK, fine.
Half the reason I am seeing a cardiologist in the first place is because of my complete heat intolerance. I mean, I sweat going grocery shopping in the middle of winter. So as the nurse was hooking me up to the electrodes and told me not to sweat or get wet, I was like, “Excuse me?”
Fortunately I showered Friday morning before work, but I was pissed off. If the doctor wanted to see how I did living my normal life, this wasn’t going to give him an accurate picture. So I went back to work with my wires sticking out and literally hanging down past my knees. I went home, had a glass of wine simply to spike the monitor because my heart rate soars after one glass, and then went to bed. The next day, I cleaned the kitchen. Big mistake. My house doesn’t have AC, it was around 85 degrees, and like I said – I sweat all the time without exerting myself. A few electrodes fell off, but fortunately she gave me extras so I reapplied, took a mini sponge bath with some baby wipes, and then proceeded to lay in bed for the rest of the day doing nothing but watching trashy TV and making myself meals. I had a glass of wine again on Saturday evening, which is more than I usually drink in a week, but I wanted to show him how it made my heart race and pound.
By 2 p.m. Sunday, I felt disgusting and horribly lazy. I ripped off those electrodes so fast. I jumped right in the shower simply to feel clean even though I immediately went outside to do yardwork and then work out. I returned the monitor and the symptom “diary” yesterday (Monday) morning so I imagine I’ll have some sort of verdict by Friday.
All I wrote in the diary was that my heart raced and I felt jittery after one glass of wine, I had a few stabs of chest pain over the course of the weekend (likely just my GERD), and felt very weak and shaky Saturday afternoon. My skin also crawled and itched as if I was covered in fleas on Saturday night – that was weird and has never happened, but I wrote it down anyway.
Of course, last night, without any wine or anything out of the ordinary (just work all day and a 6-mile bike ride like normal), my heart was beating so fast when I went to bed that I needed an additional 5mg of propranolol. That never happened while I was wearing the monitor…figures.
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