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  • SueAndHerZoo
    Participant
    October 3, 2013 at 8:47 am
    Post count: 439
    #1060220

    Hi Guys.
    I promised I would try to keep posting about my post TT journey beyond the first few weeks because I know when I search for updates they are somewhat hard to come by. I’m hoping that means that most people feel so good after a few weeks that they are getting on with life and not having time to post much anymore.

    I’m feeling “OK” but the fluctuations in physical and mental status still bother me a lot. My mantra to keep me going has been to remind myself that “this too will change soon” so when I’m having a rough time I am glad for the fluctuations.

    I am 3 weeks into my new, lowered dosage and am kind of surprised at how it’s affecting me (or at least I think that’s what’s affecting me). I do really really good for a day or two and then I hit a wall, physically and mentally, and all I want to do is crawl back home and curl up in a ball. I’m constantly on the verge of tears for no specific reason and guess you could say, depressed. No zest, no interest, just want to be left alone. I hate being like this but the good news is that by journaling I have seen that “this too shall pass”. I’m in that funk right now so hope that later today or tomorrow I will return to being a happy, bouncy person. I guess if I had to describe this feeling it would be “PMS on steroids”.

    Does that sound typical for 3 weeks into a dose change? I know everyone stresses that you need a full 6 weeks to see a difference so I guess that must mean the dosage changes create waves and phases that take over a month to settle into a pattern.

    Physically I am usually OK. I was hyper for a few weeks so that’s why we lowered my dose 3 weeks ago. I’m now sleeping again, less hot, and put on a pound or two. Now if we could get rid of this anxiety and lack of interest in life, I’d be a happy camper.

    I’m staying incredibly busy so perhaps some of this could be genuine fatigue, too, but this feels like more than fatigue.

    So that’s it….. hope you’re all doing well and hope that things settle down for me after I’ve been at the new dose another few weeks.
    Sue

    Kimberly
    Keymaster
    October 3, 2013 at 11:05 am
    Post count: 4294
    #1181328

    Thanks for the update – hopefully, our thyroidectomy crew will check in with some feedback on the dosing change.

    Yes, the rule of thumb is to wait 4-6 weeks…and some ups and downs are probably to be expected. If you get to the point where you are dealing with the fatigue day in, day out, though, I would personally be on the phone to the doctor to see if I could get a new set of labs!

    SueAndHerZoo
    Participant
    October 3, 2013 at 11:21 am
    Post count: 439
    #1181329
    Kimberly wrote:
    Thanks for the update – hopefully, our thyroidectomy crew will check in with some feedback on the dosing change.

    Yes, the rule of thumb is to wait 4-6 weeks…and some ups and downs are probably to be expected. If you get to the point where you are dealing with the fatigue day in, day out, though, I would personally be on the phone to the doctor to see if I could get a new set of labs!

    Hi Kimberly….. I think my above post was misleading: it’s not really “fatigue” I’m dealing with, it’s more of an emotional/mental lack of desire to do anything. My body is pretty much OK, I’m just kinda depressed, little anxious, and grouchy. I want everyone to stay away from me and my fantasy would be to just lie on a couch watching movies for a few days.

    Mentally tired, I guess.
    Sue

    Raspberry
    Participant
    October 3, 2013 at 12:30 pm
    Post count: 273
    #1181330

    Hi Sue thanks for the update! I know these posts will help many people now and in the future. I’m sorry you are dealing with the mental effects of the dosage change I’ve always found that hardest part of my methimazole dosage changes, like my mind just isn’t my own. I’m going through a similar negative dosage change myself very unpleasant and I debate do I try to ride it out, do I call up the endo and beg for early labs again. I hope you feel better soon!

    adenure
    Participant
    October 3, 2013 at 2:30 pm
    Post count: 491
    #1181331

    Hi Sue,

    3 weeks can definitely make a difference. When I started on 100 mcg of Synthroid, I had been on it for 6 weeks. My TSH was around 6 at that point. They increased my Synthroid to 112 mcg and 2 weeks later, my TSH was a 0.79!!! In just 2 weeks! Eventually it went down to 0.68 or so at the 6 week mark. So, I would say that yes, you could be feeling the results of your dose change. As an aside, my 112 mcg is now too strong and I’m at a 0.29 so I’m taking 112 five days a week and 100 mcg two days a week. It might be that, if you were decreased to the next lowest dose, you may find that you need to alternate doses to find the right spot for you. For me, 7 days of 100 mcg was too little yet 112 mcg seven days a week is too much… so, what can you do? Alternate! Your doctor will probably want you to wait another 3 weeks for labs, but if you’re looking a little hypo, maybe alternating the doses will help some.

    ChristinaDe
    Participant
    October 3, 2013 at 3:03 pm
    Post count: 115
    #1181332

    Sue, this happens to me with every dose change! I attribute the “PMS on steroids” feeling (I’ve used that exact term w/ my family!) w/ the level MOVING versus the level itself. I’ve always been very sensitive to hormone shifts of any kind – so I guess the thyroid is no different for me.

    But whether hyper or hypo or even normal – I’ve experienced crying, social withdrawal, “woe is me”, “am I ever going to be ok again”, “how much more can I take” mood issues w/ every med change. I get a whole host of other hormonal issues as well. Sometimes they last a week or so, and at their very worst for nearly a month. I so expect them now that I actually try to clear my calendar a bit for any dose changes. All the optional stuff anyway.

    On the flip side, I have an acquaintance who has NEVER had this happen – in fact, he can’t even tell whether he’s hypo or hyper, it’s always told to him after routine labs are done, never cuz he had a complaint. He once had a TSH of 56 and felt perfectly fine & had NO issues w/ his dose increase. Me? A TSH of 3.2 and I feel sluggish, a minor adjustment in Synthroid & I get all hormonal. Go figure! But until you know whether this is your natural reaction to moving levels or whether this is your natural reaction to just being a bit hypo (& trust me, one day you’ll know :) ), probably wouldn’t hurt to check in w/ your doc to see about getting some early labs. I did it about 3 1/2 wks into my 1st Synthroid change to help me figure out what I was dealing with. Now I can tell my version of hypo symptoms vs my version of hormone shifts pretty well w/o labs.

    Hope you settle in soon!

    SueAndHerZoo
    Participant
    October 3, 2013 at 6:15 pm
    Post count: 439
    #1181333

    Thanks, everyone….. I feel a lot more “normal” now that I’ve heard from you about the same or similar experiences.

    It just amazes me how quickly I can switch… I actually asked myself today (yes, I was talking to me) if I should entertain the thought that I might be manic depressive, but then I reminded myself (it was a lengthy conversation I and me were having) that this manic stuff only started since my TT. So I will chalk this up to hormones or being hypo, or maybe even to only being 11 weeks out from surgery. This old bod might still be adjusting to life without a thyroid.

    I hope these threads are helpful to people now and in the future. I know this forum has been invaluable to me and I would love to pay it forward a bit.
    Sue

    ibminlou2
    Participant
    October 3, 2013 at 8:31 pm
    Post count: 21
    #1181334

    Hi Sue,

    I always appreciate your candid honesty. I hit week 5 post TT this week. I have not yet had a med change, but I have hit what you described as your “manic” stage this week. There was some irrational behaviors and A LOT of tears. I always think I am the only one, but here, I know I am not the only one.

    I am looking forward to my first medication change, as I am suffering from many of my Hyper symptoms.

    We are all here for you!

    Raspberry
    Participant
    October 4, 2013 at 12:32 am
    Post count: 273
    #1181335

    So this thread makes me wonder is there no smaller adjustment possible for replacement hormone than 12mcg? Is there a 12mcg pill that can be split?

    Sue I hope you yourself and you find a peaceful zone soon. This thyroid stuff is so crazy you’ve got to talk to yourself because hardly anyone outside the internet can comprehend it.

    adenure
    Participant
    October 4, 2013 at 12:33 pm
    Post count: 491
    #1181336

    No, I think the smallest dose is 25 mcg. So, you could split that, but I don’t know if technically you’re supposed to split that pill into a 1/4. I think that’s why people end up alternating doses or maybe even skipping a day entirely while remaining on their regular dose 6 days a week. From what I understand, the weekly intake is what is looked at as opposed to what is taken in daily. When I was upped to 112 mcg, I was give the option of getting the 112 mcg pills or taking 100 mcg 6 days a week and 200 mcg (2 100 mcg pills) 1 day a week. I wasn’t too keen on taking 200 mcg in one dose, so I opted for the new prescription.

    Raspberry
    Participant
    October 4, 2013 at 1:10 pm
    Post count: 273
    #1181337

    Good to know, thanks Alexis! One of these days I’m planning to try a version of block and replace so that’s why the curiosity.

    Talley
    Participant
    October 7, 2013 at 7:45 pm
    Post count: 62
    #1181338

    Hi Sue;

    Glad to see your post…I haven’t checked in here in a long time – I’m now 16 weeks post-TT (tomorrow anyway) and for the past few weeks I’ve noticed I feel “worse”. I am crying a lot – never had this before, I feel “down” – not depressed but just sad, I’m lethargic – not really tired more disinterested and I just don’t feel “good”.

    I talked to my endo – he said my labs are “fine” – wasn’t concerned with my low T3 ad lowered T4, only looked at my TSH. I realize that I was used to feeling hyper – I don’t want to be hyper, but I want to feel “normal”…I’m worried that I will never feel normal again…makes me sad – ha, now I’ll cry again.

    I’m hoping that once I am stabilized – my levels have changed at every blood draw, that I’ll feel better – or my doctor will finally accept how I feel and make a slight dose change. I really don’t know how to find a doctor that will listen – I think I am very in tune with my body, heck, I’ve lived with it for 47 years…trying to have a doctor that doesn’t have thyroid problems understand is really frustrating!

    Best of luck – hope your mood has lifted:)
    Talley

    SueAndHerZoo
    Participant
    October 7, 2013 at 8:28 pm
    Post count: 439
    #1181339

    Sorry to hear that, Talley. I’m sure you thought you’d feel great at the 4-month mark.. I know I hope to! It’s such a weird feeling, these funks I get into, and it’s almost impossible to describe and explain to people.

    I feel like I just “shut down” but I wouldn’t describe it as tired, or exhausted, or depressed. I just all of a sudden have had enough, of everything, and don’t want to do anything or talk to anyone. And yet I don’t want to be doing nothing, either.

    My dark moods have let up for the past two days – I hope this is a new trend. I’ve got really good energy levels, actually still a little TOO high (not sleeping soundly and my stomach spasms and clenches throughout the day) but I’m not overly anxious and not uncomfortably hyper. Tomorrow will be 12 weeks post TT for me, and Wednesday will be 4 weeks since last dose change.

    What a trip this is, huh? I, too, feel frustrated with my endo from time to time and consider finding a new one. But often times I find myself grateful that he shows me the other side of things and doesn’t jump every time I tell him I want to change something. Each visit I say to myself “if I’m not happy with him this time I’m finding someone new” and I always end up saying “ok, I’ll see him again next month and see how we get along.”

    He is pretty good at hearing what I have to say, but I HATE IT when he tells me certain things can NOT be related to my thyroid. I don’t care if it’s listed in his book or not, I KNOW what I’m feeling and when it started!

    Anyway, maybe you and I should go crawl under a rock somewhere, have a good cry, and come out again in a month or two when things have stabilized. :)
    Sue

    SueAndHerZoo
    Participant
    October 10, 2013 at 9:00 am
    Post count: 439
    #1181340

    Another Post-TT update, even though it’s only been a few days. The main reason I’m back at this thread is because I desperately needed to re-read the responses you’ve all given me in the past few days, especially Christina’s. My two days of feeling good ended abruptly and now I am feeling worse than I have in a while, anxiety-wise. Chronic anxiety and some panic attacks – I had hoped I was pretty much done with those. :( I hate medicating myself more than I have to but yesterday and today I actually broke down and took a tranquilizer to try to and stop this anxiety from turning into a full-blown monster.

    It seems odd to me that at the 4-week mark of a DECREASE in Levothyroxine I would feel worse anxiety than I have in several weeks (wasn’t even this bad at the higher dosage) but I Googled and researched for most of the day and then read the book “The Thyroid Solution” and according to the doctor who wrote it, yes, this is possible and could be an indication that my levels are TOO low.

    Anyway, I’m going to give this till Monday and if the anxiety isn’t letting up by then, I will have blood drawn. I really hesitate to do it too soon because I know there is a lot to be said for STAYING at a level for a while to feel better so changing too soon could just confuse things. But my stomach is acting up, I can’t sleep well, and I’m anxious, so either I’m too high, too low, or just “shifting”. AaaaaaahhhHHhh!

    Thanks for letting me vent and for comforting with confirmation that all this is somewhat normal and part of the process.
    Sue

    SueAndHerZoo
    Participant
    October 26, 2013 at 1:01 pm
    Post count: 439
    #1181341

    OK, 14.5 week update: I just had six OUTSTANDING days. Felt good emotionally and physically, consistently, day and night. I have no idea if it is related to or just coincidental that my husband had been out of town for those days (and a few before that) so he he’s got mixed emotions about how good I felt while he was away. LOL

    I had routine blood drawn Tuesday and a check up with my Endo on Thursday and I’m still on the hyper-side. My TSH is .03 and my free T4 is at the maximum end of “normal”. He asked me if I wanted to drop down to a lower dose of Levothyroxine or stay where I am for a few more weeks and see how I feel. I opted to stay where I am because of the six great days I had AND because I really want a break from the fluctuations that come with every dose change. He gave me two blood lab slips, one for before my next office visit and a spare in case I’m feeling “off” sooner than that and want to have my levels checked. He then suggested that if I want to try taking it down a notch he could prescribe some 100 mcg. pills to alternate with my existing 112’s. That will be the next thing I try if I don’t like how I feel at 112 in another month or so.

    Please don’t ask me what my T3 was because my Endo doesn’t test for that and i’m done arguing with him about it. Except for that, I really like him and am not in the mood to start all over again with a new doc so I am just trusting that he’s right about not needing to check my T3. Apparently I am converting very well if I have no thyroid and I’m still at my hyper end. If I were feeling tired and depressed I would suspect I was not converting and would insist on a T3 test but since that’s not the case, I really don’t need to know. He only checks TSH and Free T4 in his TT patients.

    I’m a little antsy today but that may just be the new routine of having an active household again as opposed to having the place to myself for 10 days. Or, it’s a slight hormonal fluctuation. Or, it’s because the doc told me I was hyper so now my sub-conscious is playing the part. Lots of variables, but I’m feeling much better than a few weeks ago.
    Sue

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