[SueAndHerZoo August 10, 2013 at 12:09 pm Post count: 439]

#1060133

Hi there.
Since Part 1 is filled with posts focusing on pre-op, the actual surgery, and the immediate recovery period, I thought I’d start a new thread that journals the more long-term experience of TT. I find that as I go through these weeks I am hungry to hear what others have felt so I hope this will help future TT patients.

Weeks 2.5 through 3.5 were really good. My energy was fine (was able to function pretty much most of the day with no naps and slept solidly at night). I barely noticed the incision site – no pain or discomfort and looked wonderful. My emotions were really good …. no anxiety and generally a relaxed, happy mood.

Last night (3.5 weeks post TT) it changed like a light switch had been flipped. I was fine at the hairdresser’s but when I got home I wanted to tear my husband’s head off for simply breathing. There was nothing I wanted and nothing he could do to please me so I realized this must be hormones and warned him to pretty much avoid me and NOT take anything personally for the rest of the evening.

This morning as I was waking up I knew I was still feeling that way but I forced myself to get up and get dressed because we had to take our 3 dogs for their yearly physicals. While we were there I was OK but whenever there was a quiet moment (in the car, in the waiting room) I could tell that I was not right. Agitated? Angry? Irritable? I’m not sure how to describe it but I basically felt mad at nothing or no one. Is this depression? It’s been a while since I’ve had PMS but if I recall I think that’s pretty much what it felt like.

Is this part of the process and is it caused by hormonal fluctuations? It WILL pass, right????? I know, I know – patience. But you can’t tell that to someone who’s ready to tear your throat out for smiling at you. 😡

I have to go to a family outing tonight (birthday dinner at a restaurant) and I hope I can pull off being pleasant but you know what? Even though this is an agitated, lousy feeling, it is STILL better than that high anxiety and panic attacks I had before TT so if a few people don’t find me as pleasant as usual, so be it. I’ll blame it on the hormones.
Sue

[adenure August 10, 2013 at 6:44 pm Post count: 491]

#1180643

Hi!

3.5 weeks?? Hmmm… My endo. did tell me that your body’s stores of thyroid hormone last about 2 weeks to 2 months post TT. So, it is possible that you’re almost done with your natural hormone supply. Your body is probably transitioning to just relying on Synthroid. I remember feeling sooooo many symptoms that I thought there was truly something wrong with me. Every doctor from the endo, to the GP to the neurologist (yes, my headaches were so bad and frequent I thought I had a brain tumor and asked for a CAT scan!) told me it was my body trying to heal and find it’s new normal. It’s possible your Synthroid dose isn’t quite right and my guess is you’ll have labs done in another 3 or 4 weeks to see if your current dose is right or not.

I think that what you’re going through is par for the course (unfortunately). I still battle insomnia on and off (right now I’m going through a rough bout of it). In general I’m well, but there are good days and bad days, but that would be true with or without a thyroid I suppose! Hang in there and see what your labs say when you have them done and then go from there. It’ll get better (especially once your levels are stable). Good luck to you!

[SueAndHerZoo August 10, 2013 at 8:08 pm Post count: 439]

#1180646

Thanks, Alexis. Actually I’m having blood drawn Tuesday for a Thursday endo appointment. I know it’s early but he hasn’t seen me since before surgery and he will be going on vacation after next week so he wants to check on me before he leaves. I will have blood drawn at the 4 week TT mark but that’s only a little over 3 weeks since starting Levothyroxine (started on day 5 post TT) so I’m not sure we’re going to change anything off these labs unless we see something drastic.

I’m glad to hear this is probably normal and part of the process. It makes sense when you say that my body is trying to heal and find it’s new normal…. everyone said this could take months, but I try to figure out WHY it’s fluctuating since I’m taking the same dose at the same time every day. I guess it’s the combination of still having some natural hormone and also my body maybe not knowing how to process the artificial stuff consistently yet?

I always want to know why and how this all works but I guess I should be satisfied to accept that I’m not going to feel stable, consistent and wonderful in 3.5 weeks. I hate patience.
Sue

[amosmcd August 11, 2013 at 2:06 pm Post count: 231]

#1180647

Hi, Sue–

I get more irritable when I get hyper, but everyone’s different. And I’m hardly a case study for typical post-TT reactions–lol! I hope you get some answers from the labs and after talking with your endo.

Patience is over-rated. I think a good scream and crying helps more than trying for Zen moments, when your thyroid levels are not yet stable. 😆

Hang in there!

Amy

[SueAndHerZoo August 11, 2013 at 2:23 pm Post count: 439]

#1180648

Hi Amy.
I’m beginning to think there is no “normal” post TT recovery process. Your’s may be a little more complicated than some but I’m guessing there are no “by the book” experiences written anywhere, even if the doctors sometimes try to make us believe there are.

I’m feeling some hyper and some hypo symptoms….. still a little antsy and anxious yet I’m tired at the same time. At least the insomnia is gone and I can sleep when I allow myself to. Heartrate is usually good (with occasional periods of 100 bpm) but digestive system is going too fast lately. No tremors, no hair loss.

I’m guessing when I tell the doc on Thursday that I’m feeling some hyper symptoms and some hypo symptoms he’ll tell me that’s normal. Hah – it’s not often I get accused of that!

Sue

[SueAndHerZoo September 6, 2013 at 5:24 pm Post count: 439]

#1180651

Back with another update: 7 weeks post TT:

I was feeling really good at weeks 4 and 5 …. was kind of hoping that was my new normal because it was great. Enough energy to get through the day and evening, able to sleep at night, and very little anxiety. Calm and happy.

Then week 6 something happened. I noticed the dark eye circles and felt kinda “sick”. I hoped it was a bug but it is still pretty much going on. I am really, REALLY tired, stomach is acting up, and the anxiety is returning.

As I said in a separate post, I’m wondering if I’m more carb intolerant after TT so I am cutting way back on carbs for the next week or two to see if that helps anything.

Is there some sort of wall we hit or a “crash” that hits us after TT? I was hoping I was in the clear when I felt so good a few weeks ago and, medically speaking, I can’t figure out why things would go awry at the 6 weeks mark, but hopefully it’s temporary, whatever it is. I just wish I knew WHAT it was.

I go for blood work September 17 but if I’m still feeling this lousy Monday or Tuesday I will go sooner.

Not regretting the TT, just don’t like this part.
Sue

[Raspberry September 7, 2013 at 12:12 am Post count: 273]

#1180642

Hi Sue, I hope you are getting some sleep and aren’t an insomniac like me tonight! In my obsessive internet research, I’ve read a number of posts from people after TT or RAI taking literally over a month to fully adjust to a dosage change of their replacement hormone. It may be the you are finally experiencing the full effects of living on the dose you now take and it needs to be adjusted (my guess would be UP). I got early extra blood work today myself and I hope my endo doesn’t think I’m being a ninny, but I feel kind of crazy and hyper lately.

[SueAndHerZoo September 7, 2013 at 8:55 am Post count: 439]

#1180644

Raspberry wrote:

Hi Sue, I hope you are getting some sleep and aren’t an insomniac like me tonight! In my obsessive internet research, I’ve read a number of posts from people after TT or RAI taking literally over a month to fully adjust to a dosage change of their replacement hormone. It may be the you are finally experiencing the full effects of living on the dose you now take and it needs to be adjusted (my guess would be UP). I got early extra blood work today myself and I hope my endo doesn’t think I’m being a ninny, but I feel kind of crazy and hyper lately.

Hi Raspberry. thanks for the post, not sure why but it made me feel better. I, too, am obsessively reading and some would probably say that’s making things worse but I don’t believe that. Since we pretty much are our own best doctors, knowledge can’t be bad, as long as we learn how to weed out the good info from the bad. But even if all we’re reading are other people’s experiences with no science to back it, it still helps, at least it does for me.

This morning as I lay in bed with my mind racing and feeling panicky and obsessive I realized my meds might be too high. Granted, I have been complaining about being tired lately but when I look at the other symptoms, they all point towards hyper. Tomorrow will be exactly 7 weeks on 125 of Levothyroxine. That is the dose I started with after surgery and there have been no changes yet since my first post-surgery bloodwork was too early to be reliable. My digestive tract is acting up again (too fast, but I have colitis so sometimes it’s hard to tell which ailment is causing the urgency) and a lot of my anxiety quirks are back and I was throwing the covers off again last night (it was so nice not to be a furnace for a few weeks there). The only symptoms that says “hypo” is the draggy, drugged, exhausted feeling, but that could be there with hyper, too, let alone just be there 7 weeks post-op.

So rather than wait till my scheduled September 17th blood work I think I will go in Monday. My doctor will, of course, tell me my levels aren’t severe enough to be feeling symptomatic but I will tell him as I have for a while now, my body is a better gauge than the blood tests.

I only wish he wasn’t anti T3 testing. But can I assume if I am feeling a little hyper that my body IS successfully converting T4 to T3? I may have to threaten to go elsewhere if he doesn’t humor me and test for it. Why do they argue – it’s not like they are paying for the test – I don’t understand the hesitation to just check everything!

Thanks for letting me vent. I know I don’t have it as badly as some but it was SO NICE to feel great for a few weeks it’s really heart-breaking to see it slipping away, ya know?

Sue

[Raspberry September 7, 2013 at 11:03 am Post count: 273]

#1180649

I”m glad it helped! And good for you getting those tests early and pressing the doc on the T3. From what I understand, making sure the Free T3 comes out right as well is a big part of calibrating the replacement dose and type for people. I feel like the zone of wellness is just a moving target for me on ATD’s. A dose will be right for a little while but then things change again. I definitely relate to that frustration. At least once you find your sweet spot maybe you can stay there!

[ChristinaDe September 7, 2013 at 11:30 am Post count: 115]

#1180650

Hi Sue…sorry to hear that you’re not feeling as good as you were. The bad news is that I think this can be fairly common. The good news is that it’s probably just another “stage” in recovery and will get better soon. If I remember correctly, it was right about this time in my own recovery (maybe a little sooner) that I went from feeling really good, not perfect, but pretty good…to feeling awful.

I was started on 100mcg of Synthroid & did really well on that. But I still had thyroid hormone in my blood. Once that depleted I went hypo, practically overnight (yes, like someone had “flipped a light switch!). At first I thought I was going hyper, but then realized that it felt a bit different. Got my labs and found my TSH had jumped from 2-something to the teens (I think those labs were only 2 weeks or so apart!). My dose was increased to 112, began to feel better, but never as good as I did in the initial weeks after surgery. Reported it about 3 or 4 weeks later, labs were repeated, and was increased to 125. Began to feel even better…much better…and my labs were all in range. Then I began to feel rough again at the 7 month post-op mark. I had gone hypo again, not as hypo as previously, in fact my labs were in the normal range. But my endo likes the TSH to be between 1 & 2 and I was 2.6 w/ symptoms and my T3, while in range, was at the bottom of the range. So she increased me to 137.5 just a few days ago. I asked if this is normal or if I’m one of “those” patients. She said she sees this often, it takes awhile, and for some it can take up to a year to fully regulate. That probably sounds scary, but in my experience each set of symptoms leading to a med adjustment is a little less severe than the time before. Still not fun, but at least I can tell that overall I’m making forward progress.

The initial month or 2 post-TT is a little complicated by the fact that you can experience a thyroid dump causing hyper days, and then at some point the hormones stored in the body are completely depleted. If replacement isn’t high enough yet, then you’re on to hypo days.

Just an FYI. Don’t panic if they increase (or decrease) your dose and you find that you feel worse for a few days to a week. I always do. Apparently I’m hyper-sensitive to “moving” my level, even if it’s in the right direction.

I want to reassure you tho. Even tho I am 7 months post-op and getting yet another adjustment in meds…I don’t feel nearly as rough as I did with the earlier adjustments. It’s an interesting phenomenon each time. The first one nearly knocked me down. Each one is so much less severe as I get closer to the “just right” spot. If you ask me if I feel better than I did a week ago the answer is sometimes yes, sometimes no. But if at any point you ask me if I feel better than I did a couple of months ago, the answer is always yes. If that makes any sense.

This WILL pass!

[SueAndHerZoo September 7, 2013 at 12:16 pm Post count: 439]

#1180652

Thanks, Christina, your post helped TREMENDOUSLY! To know that you are still “tweaking” after 7 months helps me to accept that I can’t possibly put a logical, scientific reason behind every little shift I feel or think I feel. Here I am bummed out that at almost 8 weeks TT I am still fluctuating and some people “tweak” for months or years. I really need to learn patience but I am so bad at it – I guess I just need the constant reminders. Thank you for that.

I’ve just researched other endos in my area, checked their credentials, their patient ratings, etc. and if I am not happy with my old endo after my next visit I will schedule a consult with a new one. My original doc has done me well for years and if I beat on him he does finally listen, but I wonder if there are docs out there who listen BEFORE you break down and cry. When I ask him a question I get a 15 minute dissertation in which he quotes medical journals and scientific evidence to back what he’s saying and I comprehend about 2% and then the appointment is over. I need to talk to a person, not an encyclopedia.

OK, so even if you’re not wondering, I am: why would your level need adjusting after 7 months? What changes at that point? I was thinking I would need 3-4 months to find the sweet spot and then it would stay the same indefinitely. I’m past menopause so no more fluctuations there. Sorry – I guess I overthink and second guess everything.

Thanks again for sharing – I’m going to try to enjoy my day and not obsess over feeling “off” today.
Sue

[ChristinaDe September 7, 2013 at 12:38 pm Post count: 115]

#1180653

Sue, that’s a fair question. One I had as well.

I had actually been on the 125 dose since about 3 or 4 months post-op. My labs are technically in “normal range” – but my TSH remains above 2 (2.6) which my endo has found to be too high for many patients in terms of symptoms (that is patients who had previously lived in a hyperthyroid state). Also, my T4 & T3 – while both in normal range as well – are at the low end of normal. Some people just don’t feel well there. I don’t feel well there. So she’s increasing my dose based on symptoms and low-normal labs.

Feeling well seems to come in degrees. When I was hypo on labs, and then had a dose increase that brought them into range, I felt BETTER – so I thought I was good. After sitting at “better” for awhile & adjusting to that, I began to realize that I still felt off, as in mildly hypo. When I described it, the endo said that some people can be only a teensy bit low on labs (and even in the normal range) & really feel it, while others can be significantly out of range & report no symptoms cuz they don’t feel them. Apparently I’m sensitive to this, which is why it’s taking me longer to become optimized. Like I said before, I have felt better and better w/ each one. And I could have actually lived at the dose I was at. I just realized that I didn’t feel 100% once I sat at that level for awhile.

Fortunately my endo treats off symptoms, and believes that the lab range is arbitrary and perhaps a little too wide for people going from hyperthyroidism to their new normal.

And yes! Enjoy your day!! Hopefully it’s as pretty where you are as it is here…

[SueAndHerZoo September 7, 2013 at 1:16 pm Post count: 439]

#1180654

Thanks, Christina, for taking the time to answer and explain it so well. You’ve given me SO MUCH hope that at some point I am going to feel good! I saw a sneek peak of it a few weeks ago and was such a happy person that when I felt it slipping away it’s doubly disappointing. Too soon for me to be discouraged, I know, but who knows, maybe I’ll learn patience when I’m in my sweet spot.

Your post also made me realize that I really should do at least a consult with another endo because although mine does listen when I force him to, it shouldn’t be that much of a battle. I’d love to think there’s one nearby that is as compassionate as yours. Won’t know till I look, right? (and yes, it’s delightfully pretty and pleasant here in Conn.)

Sue

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