[ChristinaDe]

in reply to: Loss of taste with use of Methimazole #1183083

I lost my sense of taste while on methimazole too. I only took the meds for about 2 or 3 months before getting my thyroid out…and then it took a few more months after that for my tastebuds to gradually return to normal. Really messed with my appetite…strangest feeling to suddenly not be able to taste so many things! The good news is that it did improve.

P.S. For whatever reason, I could still taste sugar when it happened.

[ChristinaDe]

in reply to: How about itchy eyelids? #1183075

Sue, I am one who has experienced this as part of my puffy eye problem. The itching (and dryness) usually precedes the puffing in my case. I’m not exactly sure what causes it either, only that it came along with my other thyroid related issues & my eye specialist said that it was due to abnormal and/or moving levels. Since my levels have stabilized it happens much less frequently – but I still experience it from time to time.

[ChristinaDe]

in reply to: 1 year after TT! #1182906

It’s been about a year and a half since my TT, and my levels have been pretty normal and stable for about a year – yet I STILL feel like my brain is a bit foggy and forgetful. Wish I knew why, but I give up trying to figure that one out. I’m like you & Kimberly…queen of notes, lists and iPhone reminders! My anxiety and everything went away with the surgery, but the mind still isn’t 100%. Hmmm. I’m also 52, so it could all be normal or just a coincidence. I’ve learned to live by lists and laugh at myself, but man is it frustrating sometimes!

Hoping that you’ll continue to feel better each and every month from here…

[ChristinaDe]

in reply to: One week post TT and overmedicated w/Synthroid #1182917

When I had my TT done, my surgeon warned me that it was possible that I could experience a rough patch for anywhere from a few days to a few weeks following surgery – and that if I was going to it would probably begin in the first week or two after surgery. He said that sometimes removing the thyroid causes a “spillage” of thyroid hormone into the body (and is why they try to put people on those iodine drops pre-op, to try to avoid it or decrease it somewhat). He also said what Shirley said, that there is some hormone resting in other parts of the body that may come out to play and make you feel a bit hyper for awhile. Despite all that, he did have me start Synthroid right away (but kept me on my beta blocker until we sure that I had made it through that stage ok).

In my case I didn’t experience the big spillage (I guess the pre-op drops worked)…but I must have still had some hormone floating in my body because I felt great initially on the 100 of Synthroid and then had a BIG crash at a week 3…the same time that they expected the old hormone to be used up. So they increased me then and things went much better from there.

In other words, it doesn’t sound overly surprising to me considering where you’re at. But it does sound pretty uncomfortable, so you’re right to check in with your medical team. They can check your labs, treat you symptomatically until the heart rate comes down, etc.

Are you taking calcium after the parathyroid removal? Mine weren’t removed, but they were irritated and sleepy and the first calcium med (TUMS) I took for that didn’t work because I was also on GERD meds – so I had to switch. Just something to keep an eye on since I had some ridiculous symptoms before I figured that one out!

I hope you feel better soon…maybe you’re feeling better already?
Christina

[ChristinaDe]

in reply to: Is there always weight gain after TT? RAI? #1182696

Another vote for TT not necessarily causing weight gain. My experience is similar to Sue’s, once I felt better it was easier to be active & eat well. Because I was so worried about the whole weight thing…I jumped into an exercise regimen the second my surgeon cleared me (which was when my heart rate had slowed to normal w/o any beta blockers – about 6 weeks).

I think in cases where weight gain occurs after RAI or TT (despite healthy eating alongside an active lifestyle & otherwise good health) it’s more likely to be because of being under medicated & hypo than due to the procedures themselves. During the month or so I was hypo after my TT, I gained 4 lbs w/o eating much. That came off just as quickly when I reached normal levels. Now I weigh exactly what I weighed when I had my TT (& that’s after regaining the muscle I lost while hyper & we all know how heavy muscle is – so that would mean some fat was lost along the way). Thus far (1 1/2 yrs), it’s easier to stay at a healthy weight when my thyroid levels are consistently in the right place.

[ChristinaDe]

in reply to: does thyroid med cause stomach and esophagus irritation? #1182722

Funny that you’d ask this because I’ve been asking my drs the very same thing. I had mild reflux before I began Synthroid 1 1/2 yrs ago, but the second I began Synthroid after surgery my reflux got so much worse & feels like what you’re describing. I saw my gastroenterologist who said he supposed it was “possible” but not something he’s really heard pts complain about. He did an endoscopy to rule out Barretts esophagus & other issues but didn’t find any, so decided to change me from 20 mg Prilosec to 40 mg Protonix to help control the symptoms. That has helped quite a lot, but I still have a mild awareness of it. I saw my endocrinologist last week & asked her about it & she said Synthroid doesn’t cause reflux unless you have true gluten issues, but being hypo does (which I’m not). But I swear there must be some relationship between the Synthroid & the stomach/esophagus irritation. Or maybe I should get tested for gluten intolerance.

A couple of things I tried on my own was drinking more water w/ the pill to flush it down quicker (since it almost feels like it’s dissolving in my esophagus and irritating it) & on occasion I have taken a couple bites of food soon after my pill to soothe things a bit. Neither really worked, but I never tried a full meal.

So I’d love to hear if anyone else has been told something else…

[ChristinaDe]

in reply to: RAI on Thursday #1182275

Hi Amy ~ Interestingly, I also had symptoms that lingered on Tapazole even after my labs normalized & I was pretty confused and frustrated by the whole thing too (as was my dr, I think). It wasn’t until after I had my thyroid removed (for Graves’ & nodules) & then biopsied that I found out that I had de Querlain’s (sp) thyroiditis on top of the Graves’! So now I kind of believe that the reason I didn’t feel normal back then despite my labs saying I should was because of all the inflammation going on in my thyroid. I’ve been told this is unusual (to present w/ both thyroiditis & Graves’) tho. Anyway, the thyroiditis component made me feel terrible at the time but thankfully it’s not something like Graves’…it usually resolves on its own eventually & is limited to just the thyroid. Since I had TT because I wasn’t feeling better on Tapazole (and had multiple benign nodules), my thyroiditis ended that day & so now it’s more of an interesting story than anything else.

So I’m thinking that your dr may be a really smart one. You said that she wants to retest and if your labs are normal but you’re not that she wants to send you for an outside consult w/ a surgeon – I assume to help figure out why. I think that sounds like a reasonable & thoughtful plan. That said, I agree, it’s all pretty frustrating (I remember those days well)…and this stuff can get pretty complex w/ all our individual differences & presentations. I hope your symptoms aren’t too severe in the meantime & I hope they figure out why your thyroid is continuing to enlarge soon!

[ChristinaDe]

in reply to: 7 month post-TT update #1181787

Amy! You’re 7 months post-op, with stable/normal labs now AND you haven’t gained weight during the months leading up to this?!?! If you haven’t yet, seems to me that you’re not going to. (At least not from thyroid-related issues!)

5 5k’s since March? Your motivation sounds pretty good to me!

You’ve got this!!!!

[ChristinaDe]

in reply to: What Questions Do You Have About Thyroid Eye Disease (For Our Upcoming San Diego Event) #1181800

This may not be general enough…but I’ve had trouble understanding if under eye bags (significant swelling going down to the cheekbone that isn’t fat) is a manifestation of thyroid eye disease in some? Seems like some think it is, others don’t. I’ve been told both. But seems like I’ve heard more than one thyroid patient complain of it.

If it is known to be thyroid related, is it treatable? Can a person expect it to resolve when they’ve become stable…or is it one of those things that will require correction later? Since it doesn’t threaten vision, & is not as severe as other eye issues, even cosmetically, it seems difficult to even get docs to discuss it.

But maybe some doctors somewhere have specific thoughts on this?

[ChristinaDe]

in reply to: Has anyone heard of this? #1181794

Hi Alex ~ I can definitely see why you’re posting this question & can imagine how sick (& frustrated) you feel. Like Shirley, I’m a little confused as to whether you’ve begun any treatment yet. ATDs? Beta blockers for the heart rate? I’m sure we’ll hear more from you on that…

The one thing I thought I’d mention now pertains to the “normal” labs w/ abnormal uptake on your scans – coupled w/ severe hyperthyroid symptoms. I have heard of this sort of thing (kind of) – in my own case. When I was diagnosed, my T3 & T4 were normal & my TSH was mildly hyper (which my primary referred to as normal since it wasn’t very far out of range & left untreated for about 5 years). After years of symptoms & cardiac workups & most every other workup you can think of, I finally self-referred myself to an endocrinologist. She said that in light of my symptoms (very similar to what you’re describing), even a slight deviation in TSH becomes significant & cannot be considered normal. Apparently this is newer thinking for some docs. Anyway, what I had is called subclinical hyperthyroidism. Many, if not most, with this condition don’t have symptoms so they’re simply watched. However, if the symptoms are severe then they usually begin additional testing & treatment. In my case that was the uptake scan like you had. Mine was 65% (w/ normal T3 & T4). They also did an ultrasound of my thyroid which confirmed that it was enlarged & also had nodules. Other labs were done (thyroid antibody tests, Vit D, etc.). Because of the severity of symptoms, because of the thyroid scan, because the TSH was mildly low…treatment began. I was started on antithyroid meds to help w/ many of the thyroid symptoms & beta blockers for the heart rate. Mine tended to run fast at rest & shoot up to 180 or so w/ exertion or stress. Awful! Beta blockers really helped w/ my heart rate issues.

Not sure if any of that helps or not. A final note…I agree 100% w/ Shirley regarding the seriousness of an undiagnosed/untreated heart rate of 200 bpm. Please be very careful about exerting yourself physically, stressing out mentally, and of stimulants such as coffee until you get this under control!

[ChristinaDe]

in reply to: Thyrotoxic Myopathy #1181521

Muscle wasting is very real & very difficult. Difficult to live with, difficult to overcome. At first I wasn’t even sure I could overcome it since I’m 51 now & mine was super severe. But I have. Been a process tho.

My experience: After thyroidectomy last Feb, was so weak that I couldn’t even uncork a bottle of wine anymore. After a couple of yrs of wasting, my body was DONE. Got cleared for exercise once my heart rate went consistently back to normal (about 6 wks post-op) & really had my doubts. My labs were still hypo, and my calcium had only recently returned to normal…so had a LOT of muscle cramping/twitching/discomfort as well as joint & back pain. Also was fatigued & having trouble returning to my pre-diagnosis energy level. But I began w/ once a week workouts in Pilates w/ an experienced instructor anyway (after clearing it w/ my surgeon & endo).

At 1st, it was really hard. We had to modify many of the exercises. Dropping my head too long or too low caused dizziness, I experienced neck & lower back pain w/ moves that didn’t support them well enough, & had severe hip pain w/ certain movements. So we paid attention, made adjustments, but we kept going w/ all my drs support & encouragement. One day a wk, every wk. And it would take me 2 or 3 days to recover each time. Had muscle cramping a lot, & learned that I needed magnesium & potassium (somehow I had become low in these while ill & didn’t know it til I began working out). Few wks later, I didn’t need that recovery time, so began twice a wk. Few wks after that the dizziness wasn’t an issue so began to do what the rest of the class was doing & I no longer needed to supplement the magnesium & potassium. Couple of months after that was still having some trouble w/ neck, low back & hip pain tho despite an obvious increase in muscle mass & strength. They suggested medical massage & PT or chiro. I went w/ massage & chiro. The massage/chiro combo straightened out my posture & unkinked my muscles & now I’m doing advanced Pilates 3 times/wk plus yoga with no pain at all (10 months post-op, 8 months after starting back).

It’s absolutely a process, one that you have to work through gradually – & it’s so important to listen to your body each day. That was the hardest part for me. I have to say – I went back to exercise so soon because I didn’t like the weakness & didn’t like the loss of tone in my body – but even better than getting my muscle back was getting my mind, mood & outlook back. I attribute those things to exercise more than anything else I’ve done (although I know that even w/ exercise, if my labs weren’t normal I’m sure that my mental & emotional state would be subpar!). Helped me not to feel like that “sick patient”, to recover “me”.

Of course it goes without saying…stay in contact w/ your drs…be honest w/ them & let them know all you’re feeling…but if you’re getting their blessing, then exercise is SO helpful. Even if it’s like others have said…just beginning w/ walking or lifting your book! The beginning was tough, but it really did get better. Wasn’t immediate, but each month was so much better than the one prior. Did have a couple of hiccoughs along the way, but I addressed them as they came. I’m now stronger & in better shape than I was before I got sick.

Good luck & keep hanging in there!

[ChristinaDe]

in reply to: Combination Therapy T3/T4 #1181645

MiTh, your labs look nearly identical to mine! While I feel better than I have in a very long time, in fact nearly perfect…I think that something is still just a tad bit off, nothing major (like you said) but just needing a slight tweak. Since I am feeling so good I’ve been afraid to mess with it further. On the other hand, I have to work super hard to maintain my weight & losing even a pound is pretty tough (I gained about 5 lbs while hypo after the TT) – plus I get the occasional muscle twitch & heart palpitation. I called my dr on this & she said that she wants to test my electrolytes and some other things first. At the end of the day I honestly think those last couple of lingering symptoms are going to come down to that “low-normal” T3. Will see.

Anyway, I really hope you’ll keep posting after you get going on the Cytomel! And I hope it resolves whatever your lingering symptoms may be.

[ChristinaDe]

in reply to: Combination Therapy T3/T4 #1181640

I don’t have any experience with combination therapy yet, but I am curious about it so looking forward to seeing what kinds of responses you get. Just out of curiosity…what is your current T4 & T3 on labs?

Christina

[ChristinaDe]

in reply to: A low FT3 with Graves? #1181593

Hi Jmwatson ~ Your question doesn’t seem the least bit strange to me. In fact, it made me go back & take another look at my own labs. And now I’m more than a little curious about this too.

My FT3 was at the bottom of the normal range (2.6 – bottom was 2.4) when I was 1st diagnosed w/ hyperthyroidism & Graves’. It made no sense to me then, never really got a good answer at the time (other than it meant I had the subclinical type of hyperthyroidism & they don’t really know why some people are super sick w/ the subclinical version while others have no symptoms at all), and then I eventually forgot about it. When I went hypo after TT, my T3 was 2.5 (so it barely dropped at all but that didn’t strike me as odd since that value made sense w/ the hypo TSH). Now it’s 2.7, but my TSH is in a good place & I have no symptoms other than some eye bags & thin hair (hair seemed to quit falling out when my TSH normalized, so not sure if it’s really still a symptom or if it just needs more time to regrow).

Anyway, now that I’ve put all that in context for myself, I’m feeling a bit confused too. How can my T3 basically remain the same (low-normal) whether I’m hyper, hypo, or “normal”? It doesn’t seem to really move in my case. I think I’ll revisit this w/ the endo I have now when I see her next. The other one really couldn’t explain it to me at the time I was diagnosed, maybe this one can. Or maybe someone on the forum has more experience w/ a T3 that stays consistently low-normal despite changes in the other thyroid labs. Weird part is that it doesn’t seem to affect how I feel. That’s just counter-intuitive, isn’t it? Hmmm. Now I’m wondering if it has any relationship to hair or eyes since it’s the only value that’s a little off & those are the only 2 areas of concern I have left.

I’m glad you posted this question. I want to know the answer to it too!!

[ChristinaDe]

in reply to: Worried thyroid removal will ruin my singing #1181581

Hi Jason ~ I had TT last February. This was a huge fear for me as my father spent the last years of his life unable to speak because of a stroke. I saw his misery & wondered if I was next. So I brought this up a lot preoperatively & read lots of statistics. Like others have said it’s a “possible” complication, but an exceptionally rare one when TT is done by an experienced, skilled surgeon who performs many of them on a regular basis. My surgeon’s complication rate was <1% for vocal cord issues. And he told me that of those rare instances, most were temporary as there are post-op therapies that can improve things if it happens.

Everything turned out fine in my case. My voice was a little hoarse (probably from the breathing tube) & a little weaker (probably from the procedure itself) (intermittently) immediately after surgery but that didn’t last long, maybe 2 or 3 weeks at the most. I’m not a singer, so I wouldn’t know if my voice still hits all notes, but I’m assuming it does since everything feels & sounds the same as before surgery. In fact, my voice may be a bit clearer now – I had a fairly large goiter before.

Great question to ask any prospective surgeons to get their perspective/thoughts/statistics, etc.

Good luck to you & welcome to the forum!
Christina

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