[ChristinaDe]

in reply to: Levels within normal range, but I’m not #1177050

WWW ~
I had this problem (and concern) pre-TT as well. All my labs were perfect on Tapazole, but I felt awful. With normal labs & atenolol, I did feel better in some ways. My tremor went away, I slept more, my heart rate slowed. But my anxiety worsened and I became depressed and although my heart wasn’t going too fast anymore, it was beating harder. I had no energy, felt very weak, and my body ached. I was already scheduled for a TT by then but had become very fearful that it (or even RAI) would be unable to make me feel better since normal labs didn’t seem to make a difference. In fact, my endocrinologist basically said that if I was still having symptoms while my labs were normal then it was NOT my thyroid causing them! So I got super depressed and started to wonder if this was it for me…started to wonder if I’d ever feel well again, started to wonder if something else was to blame – like maybe I was actually insane.

Ultimately I decided that I couldn’t live this way anymore, and had absolutely nothing more to lose. I had already quit doing anything that I didn’t have to do & was not really leaving the house so life had already stopped for me. I was just getting sicker and sicker anyway. There was nothing left to fix. We’d already fixed it! I went back & forth on surgery for 2 weeks. Made myself nuts.

Couldn’t stand the limbo anymore. Couldn’t stand thinking about it anymore, so I went forward with the surgery. And for me the relief was nearly immediate. Today I’m exactly 4 weeks post-op and I feel great. Not good. Great! It makes no sense. My labs were normal then, they’re normal now. But something changed in me when the thyroid came out. So now I wonder if abnormal labs were only one part of my problem at the beginning. I’ve read nothing that says this…but now I wonder if my diseased thyroid had somehow become toxic to me. Sounds crazy, I know. But I’ve seen a couple of other older posts where a person felt better after RAI or TT despite not having felt well with normal labs on ATDs. So I think maybe there is yet one more small subset of folks within the Graves’ community…those who don’t feel better despite good labs while the thyroid is in operation. Just one more thing I don’t understand about this disease…just is what it is…for me anyway.

[ChristinaDe]

in reply to: Are We Contagious freaks? #1176926

Shirley ~ I think your perspective, your suggestion to ask ourselves THE question…did we really know what Graves’ was before getting the diagnosis ourselves? I mean “really” know. Like Karen, I experienced a ton of frustration with people…including my own docs even…not fully understanding my new disease. I got so sick of trying to explain it to everyone. I still get sick of it. And I really get sick of the usual response that I “look fine”. Or that I’m lucky it’s not cancer.

And like you, Shirley, I am an RN with a master’s degree…and yet, I knew very little about Graves’ and what people actually go through. I thought it was treatable, that after treatment people were fine on their little Synthroid pill, and that the only eye problem was the obvious bulging. No bulging, no eye problem. Now I know different. A person’s eyes can look swollen, aged, and baggy – and be very sore and have visual issues – and yet no bulging. They’re suffering but I didn’t know that then. I had no idea that a person could be in the therapeutic range on Synthroid, yet still feel hyper or hypo. I had no idea just how bad hypo or hyper could feel, or that you could feel that way and still be within the “normal” range on labs. I knew I needed to help my patient’s avoid a thyroid storm at all costs…and that a storm was serious business, but short of that I think I saw the disease more as a nuisance problem. Not deadly or anything. I sure didn’t get the mood thing or the fact that a patient’s moods are damn near uncontrollable when things are at their worst. Everything about the disease seemed smaller than it does to me now, more manageable. In retrospect, I knew so little about what the disease actually does. And in all my years of clinical nursing, I can only recall meeting one patient with Graves’. So although we see so many others with it on this forum, in reality, the disease is a bit of an orphan.

I think that I’m going to keep asking myself that question Shirley…what did “I” know before “I” got the diagnosis, before “I” lived the symptoms and treatments, and before “I” did gobs of hours of research?

As I feel better and calmer, I notice that my ability to educate others, to make them understand exactly what this is – an incurable autoimmune disease, not just a thyroid problem – has improved. Most people think what I once thought…stop the thyroid problem, stop the disease, stop all the symptoms & eye issues, etc. Oh, and regulating thyroid levels with medication? I thought that was pretty straight forward as well. WRONG! I now tell people that my thyroid problem is ONE aspect of what my autoimmune disease causes. There are others. I fix the aspects I can…TT for the thyroid, later surgery for my non-bulging but still affected eyes, and whatever else may come. I tell them that while there is medication to synthetically replace my thyroid hormones, the range is so narrow and the therapeutic range on lab sheets is arbitrary. That each individual’s sweet spot is in reality an even narrow range & can be hard to pinpoint. And once found, a million little things can change how the pill is absorbed – sending you out of your sweet spot and back to the drawing board. To make matters worse, it takes weeks to find out if an adjustment is right…that’s weeks that may run into months if more than one adjustment is needed. So the possibility of months of feeling really hyper or really hypo. And I describe hyper to them as that feeling you have when you’ve just been severely startled, that feeling that lasts a few seconds to minutes where your heart races and all your senses are on edge and you want everyone to leave you alone until you can calm down. But in the case of a person who’s hyper it lasts all day, all night, for days/weeks/months/years on end…and it’s scary and frustrating and exhausting and stressful and maddening. Makes dealing with even the smallest thing overwhelming. I tell them that Graves’ and all it does and affects is something that I need to manage and watch for life, it’s something with ups and downs, good days/weeks & bad, major victories and defeats. People seem to get that part.

But I wasn’t able to get them there until my thyroid levels were down. I was just too “foggy” and too angry then.

Karen, you are going through such a rough stretch right now. I hear your pain in every post, and I remember feeling that pain so well. I know it doesn’t feel like it’s even possible, but it does get better. Keep on fighting. And keep reaching out. You have a lot of fight in you (and this disease requires a big chunk of that, so “fight” is a good thing!). You’ll win. One battle at a time.

[ChristinaDe]

in reply to: what is recovery like after TT? #1176863

Hi @hmm0304!

I had my TT on 2/1/13 (so about 1 1/2 weeks ago). I feel great! Sounds like you’re trying to get a feel for what things will be like immediately after. I’ve put up 2 posts since my TT…if you can find them they’ll give you some insight into what my recovery has been like. Here’s a synopsis tho…

I was able to speak as soon as I woke up from anesthesia. I was only slightly hoarse & that quickly went away…as in a day or 2. I was able to eat & swallow pills immediately…and I was starved! I did have a bit of a funny sensation when swallowing my saliva for a few days. Not that I couldn’t swallow it, and not that it hurt, but just like it was a bit of a chore. That resolved in about 3 or 4 days. My surgeon said no lifting over 5 to 10 pounds for the 1st week. He lifted that restriction at my post-op visit (5 days after surgery). So it would probably be a good idea to plan to have someone with you the 1st week for that reason alone.

As for pain…when I first woke up my neck hurt. They gave me IV morphine and when I woke up the next time I had some pain but it was much milder and I used oral Vicodan that time. I stayed in the hospital that 1st night because my calcium was low and they wanted to bring it back up. My surgeon warned me of that possibility in about 30% of cases. The next morning I was discharged since my calcium was back up with oral supplements and my pain was well managed on the Vicodan. I took about 3 or 4 additional doses of the Vicodan at home for the 1st 24 or 36 hours and then I went off pain meds entirely…not even Tylenol was needed! I had some neck stiffness the first week, but gentle neck stretches were very effective in loosening it up. Oh, and I drove myself to see my surgeon on the 5th day without issue.

I immediately felt better as far as mood goes. My only issues post-op that would have required help from someone (if I’d had an 8 month old child) would be the lifting restriction, general fatigue from having just had surgery (which was significant the first 5 days, and completely gone by day 8…but I’m older than you…51!), and a bit of an issue w/ my calcium levels. Apparently the parathyroids sometimes decide to take a nap after being manipulated during TT. When and if this occurs, it is typically temporary (my surgeon says 90 to 95% of the time) and the nap typically lasts a few weeks or less. This doesn’t happen to everyone, and if it does happen it’s not a huge deal…they simply have you take calcium at home 4 or 5 times a day. My problem stemmed from the type of calcium I was given (TUMS). While this works to replace calcium in the majority of people, it didn’t work for me because I also took Prilosec. So my levels unwittingly dropped by about Day 5, causing some uncomfortable joint and muscle pain, some numbness and tingling of the hands, feet and face, and a couple episodes of tetany (a bit scary and painful, but very short-lived). Just so you know, as uncomfortable as all that was…once I was switched to another form of calcium that I could absorb while on Prilosec, my calcium quickly came back up and the low calcium symptoms were completely gone (tetany within 24 hours, and the joint pain within 2 or 3 days). Even with that accidental setback, I felt 100% by post-op day 10. Had it not been for that, I think I would have felt pretty good at the one week mark if not a little before.

Also, I’ve never felt hypo or hyper since TT. My surgeon started me on 100 mcg of Synthroid a few hours after surgery. I’d forgotten what it felt like to feel this good.

So I’d say that if your post-op course goes smoothly that you can expect to gradually feel better and more energetic each day. I was feeling pretty good at about day 5, just tiring a bit easily…and suspect that I would have felt really good at day 7 even w/ the calcium issue if I hadn’t been on Prilosec w/ TUMS. But there is always the possibility that a few extra days may be needed (as was the case for me). So if my daughter was getting this surgery and needed help with her baby afterward, I’d probably schedule 10 days to be on the safe side or a week at the minimum…but I suspect that she’d be wanting to kick me out somewhere between day 5 and 7!!

Good luck to you! And I hope that you’ll be as happy with your decision as I am with mine…and that you’ll feel just as great after you’ve completed your initial recovery!!

[ChristinaDe]

in reply to: Did it! TT done!! :) #1176789

@karenz516, I’m 51, and like you I spent some time thinking that my health woes had to do w/ stress, menopause, and plain old aging. When I found out the truth, that I had a chronic disease, my emotions bottomed out. I think I was almost grieving. Just wanted to crawl into a hole. The despair & denial, OMG!

Finally doing something, finally making a decision, any decision, seemed to restore something of my old self in me. As for the surgery, it’s only been a couple of days and I can’t believe how good I feel. Neck & throat pain are resolving rapidly, voice is very near normal in strength already…and I swear I feel better in general. This is the clearest my head has felt in 4 years, despite still taking the occasional vicodan. My heart feels so normal that I forget it’s even there now! I’m tired from the surgery and anesthesia and pain meds, but it’s a totally different kind of tired, more bearable. And my mood! It’s normal. It sounds like you’re already experiencing improvement as well. I’d say that we’re both well on our way (although we both know that we each have a little more progress to make). I hope you’ll keep posting, I’d love to know how you’re doing!

I am bracing myself for some bad days & trying to view their possibility as just another forward step to feeling well. My surgeon says that I can expect to feel a little hypo, or maybe a little hyper as we tweak my Synthroid in the coming weeks but since we started hormone replacement on the day of surgery he’s not expecting me to swing too far in either direction. It’s still too soon to know how I’ll do with that part…but I feel more in control, more optimistic, more effective than I’ve felt in ages. And coming off the tapazole feels so good. I was one of those rare people that just didn’t feel well on it despite its ability to bring my levels to normal almost immediately.

@adenure, I really need to thank you. I was losing it going into my TT, feeling as though the life that I once knew was over no matter which option I chose. Feeling like nothing was in control in my life anymore. All that sort of thing. So many fears, last second doubts, even panic. But hearing your story & seeing that you seemed to be doing so well, despite needing a “tweak” here and there and having young children and all the responsibilities that come w/ that (far more responsibility than I’m currently dealing with)…well, I hung on to your words for dear life, and created hope for myself out of them. I appreciated your honesty as well as your positivity. I still do. And I really hope that everything continues to get better & better for you.

I feel like I’m taking a journey with both of you, and that we’re all going to be just fine in the end. I’ll try to shorten my future posts. But between the head that’s finally clearing and the pain meds…I seem to want to ramble!

[ChristinaDe]

in reply to: Did it! TT done!! :) #1176786

@karenz516, wow, you’ve been through a lot. Sounds like you’re beginning to improve. Glad to hear that! Looks like we’re taking this journey together, but down 2 different paths. Could be interesting!

You asked why I chose surgery & if it was a medical or personal decision (it was both). Like most of us, I was presented with 3 options and initially didn’t like any of them. All my caregivers were leaning toward surgery, but I was not. Not initially anyway. Here’s the thought process that ultimately got me to surgery:

My PCP, endo, and surgeon all felt that my odds of remission were pretty low since I’d already had the disease for years, possibly decades. I’m not sure how right or wrong they are on that. Seen literature that agrees and disagrees on that point. However, I went ahead with the tapazole and atenolol to see how it would make me feel and also to calm myself down enough to work through my options. While on tapazole/atenolol, I felt better and worse, and quickly realized that I’m very susceptible to the non-lifethreatening side effects of nearly every med I take. Also, while tapazole quickly brought my labs into the normal range & got rid of several of my symptoms…I felt worse in general. I also found that I’m extremely sensitive to fluctuating hormones, even when they’re fluctuating from too high to normal. So for personal reasons added to medical advice, I decided that anti-thyroid management was not going to be a good fit for me. I’m too inpatient. The idea of fluctuating hormones and putting up with side effects and constant tests and labs for a year or two, just to end up right back where I am now overwhelmed me. For some it’s worth it, their side effects and fluctuations aren’t as bothersome to them, and internally they hold a hope that I was never able to grasp on to…the hope of remission. Left me with 2 options.

So I moved on to RAI vs TT. All 3 docs were leaning toward TT since I have multiple nodules on my thyroid (some large) & seem to very sensitive to even minor fluctuations in thyroid hormone levels. But I think the biggest reason they were leaning toward surgery was the fact that I had nodules that would require follow-up if I kept them & some mild TED w/ mixed studies about how RAI may or may not affect it. I wasn’t too sure about all that, about anything really. But the thing that pushed me over to surgery, the personal thing, is that dropping my thyroid levels from hyper would be a nearly instant, one time event with a fairly predictable course. I translated that to mean less fluctuations in my hormone levels over a shorter period of time – something that is important to me. Plus, with no thyroid left to sputter around – my docs felt it would be easier to find my correct dose of Synthroid…and quicker. I’d only been a patient for 2 months, and I already couldn’t take it. I just want to get my life back the quickest and most direct route possible. For that, I’ll accept the scar and a few additional risks (especially since they were pretty low). I guess I’m a bit of a risk taker. Not entirely though…I found a top surgeon first!!

I read a study somewhere, think it was from the UK, that looked at why people chose what they did when looking at the 3 options. And which ones were happiest w/ the decision made. Their conclusion seemed to be that those who were happiest, were those who were well informed AND chose their path based on their own values, no matter which option was exercised. They found that those happiest w/ long courses of anti-thyroid meds tended to place a very high value on keeping an organ, even if it was struggling, while avoiding definitive treatments that can never be undone. Those who chose RAI tended to place a high value on definitive solutions while avoiding surgery and its inherent risks at all costs, so much so that they were willing to trade surgery risks for those associated with RAI. And those who chose TT, tended to place a high value on any intervention that got them to the end result the quickest, even if it meant taking on additional risks. (I’ve way oversimplified that study, but I read it during a brain fog!).

That makes a lot of sense to me. I believe that any of the 2 options will get you there…just need to choose the one that has the most of what you want with the least of what you don’t want.

[ChristinaDe]

in reply to: New problems with eyes #1175189

I agree with @gatorgirly.

I’ve also seen a neuro-op & I don’t have nerve involvement yet either…just the swelling, mild proptosis, and dry eyes. Now that I’ve gone in to see the neuro-op, he wants to follow me with visits every 2 months. He may move those up to monthly if my disease worsens. They are hard to get into in my city as well, forcing you to jump through a fair amount of referral hoops, but once you’re in there is no problem seeing them afterward.

I don’t know how they handle referrals elsewhere, but my neuro-op will NOT see anyone without a physician referral that includes all the office notes, labs, tests, etc. I used my endo for that, but he would have accepted it from my PCP as well. He also accepts referrals from regular eye docs. If he has your chart, and is sure you have Graves’, he’ll see you even if you have mild disease, or no disease at all. Believes in monitoring.

At this point, my situation is very mild and we’re watching. If nothing worsens then I’ll only need the eyelid surgery once the acute phase ends. He’ll be the one referring me to an oculo-plastics with Graves’ experience when that time comes. Sorry if that was circular…I’m on post-op Vicodan.

[ChristinaDe]

in reply to: Started just a little bit of Cytomel #1176795

Alexis, I’ll be following you on your journey…since I’m a few months behind you. So I’ll be super interested to find out what you think of the Cytomel. So far our Graves’ journey has had so many similarities…

Good luck & keep posting!!

[ChristinaDe]

in reply to: atenolol #1176798

Apple,

I was put on atenolol 2 months ago. At that time, my heart was racing (would go from 90’s to 160’s and then back again). Gave me a feeling of “impending doom” and raised my anxiety terribly. My BP though was on the low edge of normal (110/68-ish). I also had hand tremors. The atenolol worked very well in stopping my tremors and keeping my heart rate & anxiety down. And it did NOT lower my already low BP down any at all (a good thing). I was put on a very tiny dose. 12.5 mg a day.

However, I did experience some side effects: Heart beating at a normal rate, but hard (palpitations) w/ a little shortness of breath during the simplest activity (like doing my hair!), extreme fatigue and weakness, couldn’t sleep more than a couple of hours at a time…and when I did sleep, I had a lot of nightmares, very vivid ones. I also felt like it made me feel a little depression that I hadn’t had before. So for me it was a trade-off – trading in some of the anxiety and racing & feeling like I was going to die, for calmer palpitations and fatigue & perhaps a bit of depression. I did find that the longer I was on it, the less severe the side effects became.

That was my experience (I’m still on it actually) & I would take it again if offered under the same circumstances. My surgeon says that once I’ve stabilized from surgery & my Synthroid levels are good, he’ll take me off the atenolol.

Christina

[ChristinaDe]

in reply to: Anyone feel better AFTER thyroidectomy? #1176650

Alexis ~ I am SO glad that you’ve stuck around on this forum despite doing so well! I remember seeing in a post from either Bobbi or Kimberly that most people on this site are either where I’m at (dazed, confused, & scared) or they’re people who are having a post-treatment issue. I think she said that most people come on after their diagnosis, stay through treatment, and then if they do well they tend to leave. So thanks for staying! Your pre-thyroidectomy story sounds very, very similar to mine…so hearing that you’re doing so well afterward is reassuring. I also am most bothered by the insomnia & anxiety. The racing heart is right up there too! I’m also glad that you mentioned getting to the correct med dose after only one change. It’s good to know that this truly is possible! I’ve worried (a lot!) whether anyone ever gets to the right dose very quickly. So with that…I think that now it’s time to enjoy my last few days before surgery and try to stop worrying. Time to kick some Graves’ butt!!

And yeah, the iodine is YUKKY tasting!!

Kimberly ~ I checked with the doc today about that added little newbie issue of the lump on my knuckle. Looks like it’s unrelated to the Graves’ stuff…a ganglion cyst. Will need to see an orthopedist after I’m feeling better from TT, but no emergency. Just another little nuisance thing – that hurts! Wonder if this has anything with the year? ’13! Hmmm…

Anyway, thanks for your responses!!

[ChristinaDe]

in reply to: Anyone from the Cincinnati, Ohio area? #1176578

Karen ~ I will tuck that info away. And if I decide to go to Cleveland, I’ll PM you! Hope you’re feeling well!

Kimberly ~ The information you gave me is fascinating. Oh, and interestingly enough…my vitamin D was checked. It was 14.9 (standard range of 30-100 ng/ml). Not sure where that leaves me. Fix that and see what happens to thyroid function? I’m currently taking 50,000 units twice a week.

As an aside, I think I’m about to be doctor-less for a period of time. I was seeking a 2nd opinion since I was looking at surgery vs meds (RAI pretty much ruled out due to possible eye involvement, plus multiple nodules). The soonest I can get into another endo for that 2nd opinion (one who works a lot with thyroid patients) is this summer. So I was thinking of putting my surgery off until then, and just continuing with the meds. However, my endo now feels like our relationship doesn’t have the level of “trust” that she’s accustomed to from her patients & now our relationship is significantly strained & it’s apparent that she’d prefer not to work with me over the next 6 months. She will if I don’t have anyone, but she did suggest my PCP as someone who could monitor my tapazole until I get into another endo, since I’m questioning things.

Just another complication! lol

[ChristinaDe]

in reply to: Anyone from the Cincinnati, Ohio area? #1176574

Bobbi, I’ll sen my contact info to address you gave me. Thanks.

Karen, I hope you’re doing well. Sounds like you were very sick. My situation is not as dire and maybe that’s what is making it so confusing to me. I’ve had subclinical hyperthyroidism for at least 4 years…but I suspect it’s been much longer than that. My TSH hovers around 0.35, my free & total T3 & T4 were tested for the 1st time in December. They were all normal. I was negative for TSI antibodies, but positive for TRAb. An ultrasound showed multiple nodules, the largest at 1.6 cm and an enlarged thyroid. When I went for the biopsy, the surgeon said the largest nodule was actually right around 1cm, so no biopsy…but he suggested surgery. I then asked for a thyroid scan w/ uptake and it showed uniform uptake of gland at 61.3%.

During testing, as is true throughout the past several years, my hyper symptoms with up with stress and down without it. My symptoms are a racing and bounding heart, tremor, nervous on the inside (and out), irritability, anxiety, unable to sleep, getting really hot at night, memory and thinking issues, irritable bowels. So they diagnosed me with Graves’ and subclinical hyperthyroidism. Started on tapazole and beta-blockers which decreased alot of the symptoms almost immediately. A month after starting it, I came off of it for the scan and my symptoms were the worst they’ve ever been. But my labs were the BEST they’ve ever been. My TSH had come up to the normal range and my TRAb was normal too. But I felt like I was falling apart. Muscle aches, joint pain, stomach woes, depression, anxiety, nervousness, palpitations (although my heart rate stayed down).

With normal thyroid labs, I’m not sure what to blame all that on. I’m also taking 50,000 units of Vit D twice a week, so who know. The most interesting thing is that after being off the tapazole for a couple of weeks, my thyroid labs continued to improve, but my symptoms worsened. This past Friday I went back on the tapazole and by Sunday I felt better again. Makes no sense to me.

So now I’m not sure that treating my Graves’ and subclinical hyperthyroidism is the answer…no matter what the treatment is…ATD, RAI or surgery. I am beyond confused. But the worse part is feeling crazy when I know I’m not. Since I seem to be reacting in ways in I wouldn’t expect, and since I also have mild hyperthyroidism and mild Graves’ (according to my endo)…I’ve been thinking about going to Cleveland Clinic to get another set of eyes on this. But there are other days when I just want to stop all testing and treatment and dr visits…whatever I was feeling before all this, while not good, was not this awful or confusing.

Sorry I’m rambling. Just sort of at my wits end…

[ChristinaDe]

in reply to: Memory..I go walking.. a lot!.. #1176284

I like your last post. Especially the part about slowing down, asking more questions, getting more answers, feeling more comfortable, and then letting everyone know what YOU’VE decided is best for you. Like you, I’m thinking that it all seems to be going very fast. I’m on the runaway train heading toward surgery & feeling completely out of control. The more I learn, and the more I listen to others, the more I realize that I need to get off this train until I learn how to control it better.

Hold on, while I hit the brakes…

[ChristinaDe]

in reply to: Subclinical Hyperthyroidism & Graves’ Treatment #1176323

Thanks for your responses! Bolsters what I was already kind of thinking.
So now I’m thinking…OMG!…do I do this surgery now as recommended or postpone it and try to talk my doctor into trying for a remission first?

Man, my brain hurts!!

[ChristinaDe]

in reply to: Support Groups #1176316

Thanks for the information. Looks like there’s nothing in Cincinnati yet. Maybe when I’m feeling better I’ll be able to do something about that…

[ChristinaDe]

in reply to: New To Graves’ Disease #1176290

Hey Terrie! We’re in the same boat!! My labs are very similar to yours. They tell me I have subclinical hyperthyroidism but with significant symptoms. I also have multiple large nodules on my thyroid. I just got my diagnosis a couple of weeks ago…and hearing the diagnosis made my anxiety and thyroid symptoms go through the roof! They’ve already recommended thyroid surgery in my case (apparently I have some mild eye disease)…but we are going to get a thyroid scan in the meantime to see what it shows. I was started on tapazole and beta blockers which knocked my symptoms out pretty quickly (like in about a week!), but had to stop the tapazole for the thyroid scan. Surgery scheduled February 1st, but I’m not so sure yet. At the same time all this happened, I also was going through repeat mammograms and biopsies (which ended up okay). But there are days when I’ve wondered if I’m actually going to be alright. The internet scared the heck out of me! Lol. But this site has returned my hope. Kudos to those moderating it and all those participating in it. I finally feel like I’m hearing voices of reason…

[Author]

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