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in reply to: OK now what…RAI Seriously??? #1173310

Quote:

I did not intend to suggest in any way that one is responsible for the onset of GD, merely that this has revealed a susceptability that one needs to be aware of and adapt to going forward.

I agree with this completely. I say it was a wakeup call to get out of a crappy relationship and job situation because it made me realize I wasn’t invincible, life is short, I need to be happy, etc. I don’t like to live my life in fear of getting cancer or dying in a car crash or falling out of an airplane (I’ve already intentionally done the latter), but I want to do whatever I can to live a long, healthy, HAPPY life.

Darcy, sorry to hijack your post. Have you made any further decisions? Maybe the conference in October would be a good way for you to talk to other people who are or have been in your exact situation.

[gatorgirly]

in reply to: OK now what…RAI Seriously??? #1173308

Harpy, I have to agree with Carito. Graves was my first experience with any sort of illness. I was a gymnast and cheerleader and worked out regularly but never overdid it. I ate well and had a speedy metabolism, but it obviously slowed down a bit in my 20’s. I didn’t drink much and never tried drugs or smoking. I had a stressful job that I hated, but other than that, I lived a responsible, health life. Not everyone who develops Graves did something wrong or unhealthy to deserve it. In fact, the few people I have met who have Graves have no other health issues other than stressful jobs, and there are plenty of people who have stressful jobs, families, lives, etc., who never develop Graves or any health issues. I’m all about taking responsibility for my actions and my health, but Graves reared its ugly head in my life without warning. I have no family history and my immediate family members have all recently tested negative for any thyroid issues.

Graves was a wake up call for me to get out of a crappy relationship and a horrible job, but it forced me to give up my exercise for several months and gave me all sorts of body issues that I hadn’t had before, so I don’t think it’s entirely accurate to say it should be a wake up call for people living unhealthy lives.

Of course, I respect “your opinion” but I respectfully disagree.

[gatorgirly]

in reply to: RAI yesterday, how long after did you start to feel better? #1173398

I had a sore throat that set in around Day 2 and last until about Day 4 (if I remember correctly – you can search my posts for confirmation). I felt hyper for a few weeks and ended up having to go back on PTU as my thyroid dumped, and I never stopped taking my beta blocker (still haven’t 18 months after RAI), so that helped. I got a cold about a week after, but that was likely NOT from the RAI as much as it was the combination of working in healthcare, sitting in a hospital waiting room for 3 hours waiting for my RAI dose, and being on prednisone before RAI to reduce eye effects. It was six months before I was officially hypo but I felt good within a few weeks after RAI as my thyroid slowly died off.

Good luck, and know that this is the start of your recovery!

[gatorgirly]

in reply to: How Long For Beta-Blockers #1173355

I thought I posted this yesterday, but I guess I never clicked “submit.” I have found that being a little bit dramatic when calling to request an appointment can result in an earlier appointment. If your resting heart rate is above 100, or if you’re losing a lot of weight, having loose bowels, etc., tell the receptionist this. He or she may freak out and tell the physician they need to get you in soon. I’m not suggesting you be dishonest, but when I could tell I was either hyper or hypo but had no lab slips or upcoming appointments, I would call and exaggerate a little because I KNEW I needed a med adjustment but the gatekeepers were making that extremely difficult.

Worst case scenario, please go to the ER if your heart rate is above 120 resting or if you start to feel seriously ill.

[gatorgirly]

in reply to: Ophthalmologist referral in Los Angeles? #1173325

Hi MK,

I’m in MA so I can’t help you with a referral but I just wanted to point out that orbital decompression is the surgery to which I think you are referring, and it is not cosmetic. It is considered by both surgeons and insurance companies to be medically necessary, as are the strabismus and eyelid retraction surgeries.

While you’re waiting for a response, you can go to http://www.gdatf.org/registry/search/ to find physicians who have either been recommended by members here or who have indicated that they treat Graves patients.

[gatorgirly]

in reply to: Thyroid Regeneration? #1173332

I don’t want to feel like I was chastising you or demanding you take your pill. I completely understand why it feels like it would be better not to take anything when you feel this way. I think the first call needs to be to your endo to fill her in on the latest symptoms and lapse in meds. Then maybe you need to get a second opinion or switch endos if you feel like this one isn’t listening to your concerns – which are completely valid, by the way.

I hope you feel better soon. Hyper is such an uncomfortable feeling.

[gatorgirly]

in reply to: Thyroid Regeneration? #1173333

Yikes, I would not stop taking your medication without a physician’s approval, but you’ve already been doing that for a week so now it might take even longer to level out on the correct dose. Sometimes, people are on the same dose of replacement for years and for one reason or another, suddenly need a higher or lower dose. You haven’t been on it that long in the grand scheme of things, so I don’t think it’s uncommon to still be trying to find the right dose. I’ve been on Synthroid for one year exactly, was still on the hyper side at first and now I’m at the opposite end and significantly hypo. We only get labs every six weeks because replacement hormone takes several weeks to adjust levels, and because TSH lags.

I think you need to call your endo ASAP, tell her your symptoms feel out of control, and you need some immediate relief. You may just have to wait it out and let the drug do its job like we did when we were diagnosed and first began ATDs. Being hyper is no fun, but not treating your hypothyroidism is even worse and harder on your body than it may feel. Stopping the replacement won’t immediately alleviate your hyper symptoms (which is why you still feel hyper) but it is not a good move to make without speaking to your endo.

I can’t answer your tissue regeneration question but please call your doctor ASAP.

I’m sorry it’s been such a long, arduous process for you to find the right dose. It has been for me, too. In exactly 12 months, I’ve gone from 100 mcg to 75 mcg to alternating 50/75 mcg back up to 75 mcg and now I am on 88 mcg (for the last two weeks) and still hypo but slowly getting back into normal ranges.

[gatorgirly]

in reply to: OK now what…RAI Seriously??? #1173289

Hi Darcy. Just wanted to let you know that I originally was opposed to RAI for a number of reasons but after meeting with both a surgeon and a nuclear radiologist, I decided RAI was a better choice for me than surgery. There is no one perfect treatment, as all have their risks and benefits, but I think you should meet with a surgeon as well as someone in the nuclear medicine department who can talk to you about RAI. You don’t need to be in isolation for a week. It’s typically 72 hours. I had mine done on a Friday and went back to work Monday morning, so you don’t need to take a week off from work unless you want to.

To say that you know someone who had RAI but has never been the same is a little unfair. I’m not sure what’s wrong with your friend, but RAI is a proven, safe, effective treatment and I don’t think our endocrinologists and radiologists would allow to undergo a treatment that had more risks than benefits.

I had RAI and have felt fine ever since. It’s been a struggle finding the right Synthroid dose, but people who had surgery can experience the same struggle. I developed TED, but as you know, RAI’s effects on TED or the likelihood of TED developing or worsening are not known. Plenty of people never develop it after RAI or do develop it after surgery or elsewhere in their Graves journeys, regardless of treatment. Your endo can prescribe steroids for before and after RAI to reduce the likelihood of TED, too.

I agree that a second opinion would be wise, especially if you feel your endo is pushing you to one treatment versus others. Can you ask her why “you don’t want surgery”? Maybe based on your medical history, it would be too risky. However, I think the most valuable opinions you can get are the surgeon’s and the nuclear radiologist’s (or the tech’s, since they are the ones with more patient interaction). For me, it was the surgeon who would rather turn down a $12,000 surgery than put an otherwise healthy 25-year-old through surgery when a pill could do the job.

I am by no means recommending RAI for you. I just want to make you a sound, rational decision rather than one based on emotions and misinformation and one person who maybe had a bad experience with RAI. Graves sucks, I agree. But you WILL get better!

[gatorgirly]

in reply to: Crazy Journey #1173171

Carito – what wasn’t working with propranolol? I have been on it for 2.5 years now. It’s doing what it’s supposed to do – slowing my heart rate down. I am down to 10mg every morning but if I have more than one glass of wine in the evening, I find I need another 5mg. My LDL doubled after I started taking it, so my endocrinologist was eager to take me off it, but we just can’t seem to regulate my heart rate without it. My new endo did mention there are “better beta blockers than propranolol.” Like krcole, I also find myself short of breath often, but I attributed that to the palpitations…maybe it IS the propranolol. Next time I see him, I’m going to ask about metoprolol or any other BB that will not drive my LDL through the roof. My goal is come off it completely with six months.

krcole – sorry to hijack your post but I figured my question to Carito about propranolol might be of interest to others on here as well. I hope you find the surgery brings relief. It sounds like this is just one more thing you don’t need to deal with and I wish you the best.

[gatorgirly]

in reply to: Orbital decompression is a go #1173115

I did read about the nasal spray suggestion on many hospitals’ OD info pages, so I have added that to my list of questions for the surgeon. Of course, I won’t do or take anything he doesn’t recommend.

I will not have dissolvable stitches but the old-fashioned kind. Did you have both an oculofacial and ENT surgeon like I will? I wonder if that’s why I won’t have the dissolvable stitches since I will only have two tiny incisions, one on the outside of each eye where my non-existant crow’s feet are.

I just read some scary stuff about taking arnica by mouth on the University of Maryland Medical Center and American Cancer Society sites. And according to the National Institutes of Health, there is insufficient evidence to rate the effectiveness of bromelain for reducing swelling after surgery. I don’t know, maybe they are working for you and I do prefer natural methods whenever possible, but I don’t think I want to do anything that my surgeon does not explicitly prescribe pre- or post-surgery. Did you surgeon prescribe these for you? Or have you had good results with them in the past?

It takes a lot for me to take pain meds, but I do plan to be diligent after surgery, at least for the first few days and whenever I go to get my sinuses flushed. I have only taken them twice in the last year, for a second-degree sunburn on both of my legs (hip to toe, so pretty) and when I spent Superbowl Sunday in the hospital with norovirus along with half of Ft. Myers, so I need to be in pretty severe pain to take them.

[gatorgirly]

in reply to: Looking for others input of progress please Post RAI #1173134

I just want to add that even though my endocrinologist’s goal was euthyroid and we missed that mark, my new endocrinologist (I moved) has confirmed there is no remaining thyroid tissue, so fortunately almost no chance of the thyroid regenerating. My first endo acknowledged the research and guidelines and said he doesn’t attempt euthyroid with other patients, but I was so sick that he just didn’t want to see me on the other end of the thyroid spectrum feeling just as sick.

I’m glad you bring up Cytomel/T3. I plan on asking about this at my next endo appointment (goodness knows when now that I have 348 pre-op appointments with all sorts of doctors).

[gatorgirly]

in reply to: I don’t think the Prednisone is working #1173199

I started out on 50mg and taped down by 10mg every three weeks. I’m obviously not a doctor, but 10mg every week seems like a big jump. My neuro-ophthalmologist’s (he was treating my TED, not my endo – another red flag, as your endo shouldn’t be the one treating your eyes) biggest concern was that even though the 50mg seemed to bring immediate relief, that the symptoms would return as we gradually lowered my dose, or when I stopped taking it altogether several months later. Fortunately, they did not.

Go to the ophthalmologist tomorrow, but keep in mind not all ophthalmologists treat TED. He or she might, and you might not need the neuro-op (they are usually hard to come by and even harder to get an appointment with). Or, you might be told you’re fine, it’s allergies, etc. In that case, absolutely ask for a referral to a neuro-op because a lot of us were told we had allergies or infections when we actually had developed TED.

No one “wants” to take a higher dose of corticosteroids given the side effects, but you might need to start on a higher dose or at least stay at the 40mg for a few weeks.

My neuro-op did tell me that there was a chance prednisone would not help at all. For some people, it just doesn’t. He told me in that case, radiation would not help either. Maybe that it his experience, but you could always ask about your other treatment options if you are right and the prednisone is not helping. I forget from your original posts – is your vision affected?

Good luck tomorrow. Bring a list of concerns and questions since it may be a while before you can get in to see another TED specialist.

[gatorgirly]

in reply to: Looking for others input of progress please Post RAI #1173131

Hi beach,

The term is “euthyroid” and my endocrinologist, against most guidelines, really tried to get me to euthyroid via RAI. I got a small dose since my uptake was so high (something like 89%) but also because he wanted to try and kill off only enough thyroid to be euthyroid instead of hypo. Of course, he failed, and for a while we worried I would need another round of RAI. It was not medically irresponsible of him, but he really was trying to prevent me from being on Synthroid forever. This almost never works and the thyroid can regenerate and even start working even harder, thus causing hyperthyroidism again. I hope for your sake you achieve euthyroid without needing replacement hormone but I understand this is highly unlikely. As they say, hypOthyroidism is much easier to manage than hypERthyroidism. One pill a day is pretty easy even if you cannot get stable on a dose like me.

Also, I totally know what you mean. I finally told my co-workers about my Graves today. One co-worker’s wife has lyme disease – so bad she can’t work – and she can’t find any sort of online support group that is anything like this one. He said all she can find are ones where people complain and recommend all sorts of nonphysician-approved treatment alternatives…scary!

[gatorgirly]

in reply to: Orbital decompression is a go #1173112

Surgery is scheduled for Sept. 25…in the afternoon! I have to fast starting at midnight, so it’s going to be a long day with no food – and I’m one of those six small meals a day people. I plan to sleep as late as I can, do some light yoga and take a few walks with my dog to pass the time, and bring my iPad to the pre-op area to watch some movies or catch up on my shows and then Skype my mom before it’s time to go to sleep (my dad will be with at the hospital with me).

Thanks Kimberly. I will look into the software. I know my laptop has a “read to me” function but it doesn’t type what I say, only reads aloud what is on the screen. Fortunately, all I really need is a phone to handle any work crises (I’m the college spokeswoman), and I will get one full week of peace and rest and then I will turn my phone on for any PR emergencies or reporter questions the second week, even if I’m still at home.

[gatorgirly]

in reply to: Orbital decompression is a go #1173110

Shirley – I am actually 90 minutes from Boston, in the little nipple of Massachusetts on the CT border. So luckily there is a great surgeon here, otherwise I would have to drive to Boston for this. I went to UF, so I’ll always be a Gator What kinds of ice packs do you recommend? I am pretty loyal to the 88 cent bags of frozen peas but I want to make sure whatever I use won’t make the pain worse or press too much on my eyes. The head of my bed is already raised, and I need to buy some jersey knit sheets so that when I raise it a little more, I don’t slide down my bed (I already do sometimes!).

Todd – I like your idea. I have always had a weak immune system, so I am kind of a jerk when it comes to people around me who are sick and refuse to stay home, so this will not be a problem. I might even steal some masks at my next appointment and wear those whenever I’m out in public before the surgery, and maybe even after. I’m really stressed about not being able to blow my nose because I normally do that about 15 times a day and can’t take my Claritin the day of surgery. How are you feeling now that’s it’s been almost two weeks? Are you back at work? Back to normal activities? How’s the bruising and swelling?

I still don’t have an official date (should today or tomorrow), but my boss told us she needs our time off requests for now until the start of the academic year (I work for a college), so I had to break the news to her and my two officemates. I was worried they would freak out, but they actually said, “Graves?! That’s what our previous director had. He had the eye problems, too!” So they totally get it, and we spent the next hour discussing thyroids and eyes and the surgery. What’s strange is that I work in PR/marketing. He was the marketing director. The PR director at my last job has Graves and TED. We all enter this profession knowing it’s high stress and not something you can shut off at 5 p.m., but I find it curious that I know three people, including myself, in this profession with Graves, something my first endocrinologist has always attributed to the extreme stress in my first job out of grad school.

They want to know what accommodations they can make for me to make life easier from now until I am recovered from surgery. I told them I already work in the dark and wear sunglasses all the the time outside (now they know why) but that the nurse at my surgeon’s office said computer work might be difficult during weeks 2-4, and nearly impossible if I get double vision. Does anyone know if there are special computer screens that can help, or software problems that help ease eye strain? I think my best bet will be to take one full week off, then plan to play it by ear from then on, probably working from home or even coming in to the office a few hours a day as long as someone drives me. Again, that’s a bridge I don’t want to cross until I must.

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