Viewing 15 posts - 1 through 15 (of 16 total)
1 2 Next
  • Author
    Posts
  • Bobbi
    Participant
    September 17, 2009 at 8:05 pm
    Post count: 1324
    #1068197

    I am so sorry you are having such problems. I know it is hard, but two weeks is still too soon to start fretting.

    First off, the dose of synthetic replacement you are on may not be the right dose yet. There may be thyroid cells still dying off, you might eventually need more — or less of a dose. Some doctors start out deliberately low, because they do not want to risk making us hyperthyroid again. Sometimes, the doctor tries to estimate the right amount needed, but adjustments have to be made.

    It does start to work right away, and is converted, right away, into T3. It also builds up over time to provide a cushion of T4. T4 has a half-life of almost one week, so any that your body does not need and use one day, gets saved to be used another day. Over time, it builds up.

    The hardest part right now is that you truly have to wait a while before having another blood test to determine whether or not to adjust your dose. If you go in too soon, and your TSH has not had a chance to adjust properly to the dose you are on, you could put yourself on a hormonal roller coaster. My doctor, against her own comments, changed me too soon: she thought I looked more hypo than I should have, and adjusted my replacement up. I went hyperthyroid, and had to have things readjusted weeks along down the line. It is better to guts things out and wait however long your doctor recommends between blood tests.

    I do hope you are feeling better day by day.

    ewmb
    Participant
    September 17, 2009 at 9:09 pm
    Post count: 484
    #1068198

    Thanks Bobbi,
    I am supposed to go back at four weeks to have blood drawn. I am glad to know that the T-4 is being converted right now. I am hoping that some of my problems are that I had a short period a few days ago and am having another one right now. I had this same thing happen when I went hypo on my ATDs at one point. I will keep on toughing things out because there is no other real choice at this point. I just have to have a little whine now and then because I am low on patience…………. Helping my daughter with chemistry homework tonight has worn my brain out too!

    It’s always nice to get the facts and someone else’s experience. I know I am on the other side of the mountain now and have come a long way. I will keep your story in mind when I get my next test results. I guess I don’t really care what the numbers are as long as I can start to cope again.

    Do you know if having my BP start to go up is part of being hypo? It has been fine for a long time and now sometimes it just shoots up, but doesn’t stay up. It feels like my body can’t regulate things.

    ewmb

    ewmb
    Participant
    September 17, 2009 at 10:34 pm
    Post count: 484
    #1018972

    I know that 2 weeks isn’t very long in the new world of synthetic hormone for my body but I feel worse than I did two weeks ago when I started. I am so tired! I can’t even really feel safe driving three minutes to work from my house. When I got to work I saw that I had two different socks on. I only stayed two hours. I thought I would literally nod off at my computer waiting for it to load an e-mail. Everything makes me cry it seems. I am sore in my forearms, I have tinnitus now in my left ear, a dull roar that keeps me from falling asleep when I am exhausted. I have to turn on the dishwasher right at bed time and keep my door open so it blocks the roaring in my ear. When will this really start to make me feel better?

    Does the T-4 level have to build up enough or is it converting into T-3 every day? Is this a sign that the 25mcg I started on is too low a beginning?

    Just needed to whine a little……….instead of crying.

    ewmb

    Hopeful23
    Participant
    September 18, 2009 at 7:55 pm
    Post count: 211
    #1068199

    I didn’t REALLY start feeling good on my synthroid until about a week ago and im 8 weeks into it. I was REALLY exhausted and had ZERO energy. I felt I was wall hugging for about two weeks. It was awful. I didn’t have the symptoms you are descriping but those are hypo symptoms so A. Either its not build up in your body enough for you to feel a slight bit different or B. You will need a dose adjustment in 6 weeks. I was started on 75mcg and thought it was too little and came back with PERFECT blood results. I think you need to give it TAD bit more time and really show your concerns to your endo if things dont improve in about 2-3 more weeks. This was just as hard for me as hyper was. Stay strong WE made it through thee absolute worst so just a few more weeks hun, YOU CAN DO THIS. I too was VERY emotional. You looked at me wrong, i heard a sad song, I couldnt figure something so simple out I WOULD START CRYING SOOO HARD I would give myself a headache. Make sure you get rest and take synthroid on an empty stomach with a full bottle of water. I noticed when I didn’t take it that way I felt "off". Take it at THE same time and try not to get so worked up because it makes you feel worse. I know easier said then done but I am just a few weeks ahead of you now and just want you to get better faster….xoxoxoxo

    Krystal

    runlacie
    Participant
    September 18, 2009 at 8:18 pm
    Post count: 222
    #1068200

    ewmb- just wanted to let you know I feel your pain! As Krystal so eloquently put it a couple weeks ago, we have now reached the "other dark side." I am still drinking pots of coffee but feel like I could just fall asleep at any given moment. Nights are scarey wondering if my heart will just decide to stop. Since I couldn’t coerce the doctor into starting me on replacement I decided if I feel bad enough I will have no choice but to just go to the ER. That ought to be good for at least freaking a couple people out with my HR of 35, lol. I only feel really bad when I sit or lay down and my HR drops, so I’ve been trying to keep myself busy.

    Krystal- good to hear from you and I’m happy your labs were perfect! YAY!!!! The dark side doesn’t last forever, huh??? <img decoding=” title=”Very Happy” />

    ewmb
    Participant
    September 18, 2009 at 8:57 pm
    Post count: 484
    #1068201

    Thanks Krystal,
    Today was better. I am trying to cope and my family’s been great. My husband did the grocery shopping tonight and made dinner. I will get there I know. I am now using Christmas as my next goal for feeling better. It’s so far away that surely I will feel better by then. One day at a time and sometimes one hour at a time…….

    ewmb

    npatterson
    Moderator
    September 19, 2009 at 1:41 pm
    Post count: 398
    #1068202

    Two weeks isn’t enough time. Keep track of what is going on, so that you can give the doctor some facts when you see him or her. Hypo is not a good way to feel. Oh yes, I remember the tears for absolutley no reason, the brain fog, and being cold. I went to the doctor (in Florida) once, and refusedto take off my long wool coat, my gloves and my wool scarf. For you that don’t know–nobody wears winter things like that in Florida. I guess that was my visual list for that visit.

    The more facts you can give your doctor, the better the adjustment of your medication will be.

    Take care,

    ewmb
    Participant
    October 1, 2009 at 8:54 am
    Post count: 484
    #1068203

    I"m now 4 weeks on levoxyl and my TSH went from 19 to 62! Is this a normal lag or is it showing that my 25mcg of levoxyl just isn’t enough to start making any difference yet? I am waiting on a call from endo this morning about whether to up the dose to 50 mcg or higher.

    ewmb

    Bobbi
    Participant
    October 1, 2009 at 9:25 am
    Post count: 1324
    #1068204

    I think you’ll find your doctor will increase your dose of replacement hormone! To help things along during this time, make sure to take your replacement first thing in the morning, and wait a while before you eat anything. That helps to get the maximum amount of the pill absorbed into your blood.

    Good luck,

    runlacie
    Participant
    October 1, 2009 at 10:03 am
    Post count: 222
    #1068205

    Yeah, I definitely think an increase is in order. Maybe even more than 50mcg? Maybe you’ll get to go all the way to 75? My first official hypo TSH was 29 and I went to 50. I really think I ought to be on at least 75, though. If you’re doctor only puts you on 50, at least push for maybe getting your labs done a little sooner?? No wonder you’re still dragging, you need MORE <img decoding=” title=”Smile” />. Good luck and I hope the phone call comes soon for you!

    ewmb
    Participant
    October 1, 2009 at 10:40 am
    Post count: 484
    #1068206

    Lacie,
    How are you doing now? Any change in your heart rate?

    ewmb

    runlacie
    Participant
    October 1, 2009 at 2:59 pm
    Post count: 222
    #1068207

    ewmb- I’m okay, hanging in here. Heart rate came up nicely at first, but now every day it seems to be slowing more again. And I still have over a month to go before I see the doctor or have labs. I know I should be taking a larger dose, 50 just isn’t enough. This may be crazy sounding, but I still feel that weird sore throat I’ve been getting since RAI and it seems like every time I have that I feel a wee bit more hyper but then fall back down to even more hypo than before the sore throat. I swear I can feel the little guy just dying in there and giving off what’s left of my own thyroid hormones. It makes me kind of sad sometimes. I almost wish I wouldn’t have killed it since now I’m getting fat and there’s no turning back and my doctor won’t listen to me about more medicine. She promises to keep me more to the hyper side of normal once I’m regulated, she says that’s how she likes to keep her patients TSH levels- and I know this to be true since I found out my neighbor is also a patient of hers and the neighbor told me that’s how this doctor tries to keep hers- so I guess once I have finally found my way to "regulated" we can tweak this so I don’t stay sluggish and gaining. Uggh. It’s just getting there- more of the Graves’ PATIENCE needed!

    Did you hear anything back yet???

    ewmb
    Participant
    October 1, 2009 at 3:55 pm
    Post count: 484
    #1068208

    Yes,
    I got a weird message from the doctor to stop taking my methimazole since it looked like I had gone hypo. I called and the clinic was closed so I called his office number and got him and explained that he had already put me on levoxyl and he said "oh, then I guess you should up it to 50 mcg." I am thinking about changing offices when I get a little more settled. This doctor is fairly old and either didn’t get the message/fax of labs correctly identified with me or he didn’t put notes in my chart after he prescribed the levoxyl etc.. Not sure which but this isn’t the first sign that maybe his memory is going.

    ewmb

    Ski
    Participant
    October 1, 2009 at 4:10 pm
    Post count: 1569
    #1068209

    Sadly, another pretty common occurrence ~ I think it may have something to do with the amount of time we must wait between EVERYTHING, our doctors just lose track of us sometimes. Still, best to at least TRY to get to one who can keep up with where you are….. It’s so much better to feel as if our medical professional is along for the ride!

    This is a pretty tough time in the treatment cycle, but do remember how far you’ve come, and know that you’re closer every minute to the real health you deserve. The waiting game is a given for all of us. Doesn’t make it any more fun to go through, I agree, but at least you know we’ve all been there, and we’re here, and you’ll get here too!

    One more comment ~ you shouldn’t go up more than one dose level at a time (it triggers an "emergency" response in your body), so don’t think your doctor is giving you substandard care if that’s what happens. It’s safer for you. Oh, and oops, one final comment ~ it takes at least three weeks before you can even begin to feel, physically, how you are responding to a new dose. Our body needs to build up some T4 before it’s uniformly available when we need it. Until then it’s kind of like being on a teeter-totter.

    Wishing you all health, soon! <img decoding=” title=”Very Happy” />

    runlacie
    Participant
    October 1, 2009 at 7:30 pm
    Post count: 222
    #1068210

    ewmb- geez, good thing you are informed and know what should be going on with your treatment, huh? Crazy. Well, I do hope the 50 makes you feel better. When do you get more labs? Keep me posted… we seem to be going through all of this together, huh?

    Ski- thanks, as usual, for that info. I read about the meds and how it does take time to build up the T4, but didn’t know how long. Maybe there’s hope I might feel better before worse again then?? I am trying hard to wait it out at least another week or two before I start pestering the doc office again.

    I’m only now in my second week (9 days, I think) of Levo. I do feel a big difference from before when I had to be scraped up off the couch and crawl up the stairs to bed. I’m pretty functional. And it’s better than hyper. Just stinks to be getting heavy and my legs feel like lead. I couldn’t wait to run and now I really have to force myself to go and I feel so blah, quite a change from bouncing off the walls to hugging them. One of my biggest fears was that I would be allergic to all the replacement meds, so it is a big relief to me that it seems like I’m going to be just fine as far as that goes.

  • Author
    Posts
Viewing 15 posts - 1 through 15 (of 16 total)
1 2 Next
  • You must be logged in to reply to this topic.