Viewing 15 posts - 1 through 15 (of 48 total)
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  • amosmcd
      Post count: 231

      Hi, everyone–

      Can’t believe it’ll be 3 months since my TT on 4/30/13 soon. I feel pretty guilty about not keeping up my posting or posting on other members’ post-TT journals. I have been plagued by tons of anxiety and a huge lack of energy and motivation since my TT. It’s been a real struggle for me.

      I’m not ready to say I regret it yet. I just miss how good I felt right before the surgery. Which was how I should have felt with my labs good. I am not anywhere near that level of feeling good yet.

      I saw my endo last week and she feels bad that I feel bad. I saw my therapist who said she could tell I was not my usual self the past few months and to tell the endo that this was not, in her opinion, a psychological issue, but something related to the TT. So the endo took that seriously. My ferritin level is still only 20 (up from 11–normal is 11-300 and most people feel best above 100) and I have tried but can’t tolerate oral iron pills or liquid at all. Horrible stomach and intestinal problems whether I take it with food or without. So my endo is arranging for me to get an IV iron infusion. I’m waiting for a hematologist’s office to call me back to arrange it. My insurance may require a pre-authorization so it may take a couple more weeks. I have no idea whether getting my ferritin level up with alleviate what I’ve been feeling or not, but it will help rule out one potential problem.

      My endo did increase my levothyroxine from 75mcg to 88mcg because my TSH had gone from 1.35 to 3.80 in 4 weeks. My FT3 and FT4 are low normal and are basically unchanged from 4 weeks ago. I haven’t noticed any change from the increased dose yet, but at least it’s not making my anxiety worse.

      So right now I’m in a holding pattern, waiting to feel “normal”. It’s been very hard feeling like a good day is when I accomplish a few small tasks around the house and maybe go for a walk. I have a huge list of things that normally I would accomplish over a weekend and I just can’t deal with them. Grocery shopping is a nightmare now. You’d think the grocery store was a 500 mile drive. It seems like a monumental task. My house is a mess. I’m able to work, but can barely get through the day. I’m tired all the time and not sleeping well at night.

      In good news, my incision has been healing up nicely. Just a very thin pink line. I wear sunscreen on it and if out in the direct sun for more than a few minutes, I wear my SPF 50 sun-fabric neck gaiter. My endo said that there is very little fluid under the skin, and what’s there should be gone soon. My voice is a lot better, but still unable to sing past a certain range without straining. I’ll give it the year it sometimes takes. After that if it’s still a problem, I’ll see what the surgeon says. I’m not a good singer, just like to sing along with the radio, so it’s more of an annoyance than anything else. It’s just weird to have my voice be unable to reach the notes I could before.

      I apologize again for not keeping up with the forum. It has just seemed overwhelming to me. I hope I’ll start feeling better soon. This has been a real paralyzing time for me.

      Hope you are all having a nice summer.

      Amy

      snelsen
        Post count: 1909

        Oh, Amy. I am so glad to hear from you. I think of you every day.

        I do know how you feel, all of it. I had a different trajectory, for I was super fine after my TT, and I guess I got my comeuppance about month 5. From one week post op to 5 months, I was back to normal, worked, nursed a baby, had fun, energy for everything (but not hyper energy, just normal 24 year old energy.) Then BOOM. I could have written your entire post. But I was not working full time, only 50%.

        I don’t know a lot about ferretin levels, and the extent of low that is contributing to your general feeling crappy, but I think when you get the infusion, it will make a big difference. does this level coordinate with your HCT and HBG, are they low too?

        Sure glad you had the Synthroid increased, sounds like the right move at the right time.

        I thought your incision looked wonderful a lot time ago. I imagine in another few months, you will have to show people where it is.

        I hope you get a good sleep tonight. I have a very difficult time sleeping, and I worry about it.

        Sure hope all is looking better for you in the next few weeks, that the combo of iron and more levo will begin to change your world for the better in a short period of time. YOu have more than paid your dues!
        Shirley

        Gabe
          Post count: 182

          Hi Amy. So sorry to hear you’re struggling post TT. That really sucks. I hope for you that the increase in Levothyroxine and the further iron tests help. I was increased from 50 mcgs to 100 mcgs within 4 weeks post TT and I’m glad he did that. I even suspect I should be a little higher since I’m feeling a bit sluggish and putting on weight (although that is not a real concern…would rather feel good and worry about weight gain later).

          I hope your doctors can get you to a good place. I’m sad for you, but hopeful.

          Best wishes, karen

          SueAndHerZoo
            Post count: 439

            Oh Amy, so glad you wrote and updated! You must be psychic… the other day I was reading your entire journal and was kind of surprised at how it stopped (I think June 7?) and then I searched all your posts by your name to see if I could find any updates that way.

            I’m so sorry you’re feeling so badly. I wish one or more of your doctors could tell you why this is happening. I’m guessing low feritin has a lot to do with it, but the anxiety? Not sure how that would be connected, unless the anxiety is just from being completely and totally exhausted overall. Are you taking anything for the anxiety? Perhaps you should?

            Apparently your roller-coaster ride isn’t over yet, and Lord knows you deserve it to be over soon, so please keep the faith that the worst is behind you and better days are coming soon.

            And please keep us posted, whether it be good reports, bad reports, or in-between reports. Sending healing and positive thoughts your way.
            Sue

            Kimberly
            Online Facilitator
              Post count: 4286

              Thanks for the update, Amy. Sorry to hear you aren’t feeling well right now — your description sounds almost exactly like how I felt in my first few weeks on Methimazole. Hopefully “this too shall pass” and you can get back to enjoying life. Sounds like you have a supportive medical team, so that is good news. Take care of yourself!

              amosmcd
                Post count: 231

                Hi, Shirley!

                I’m sorry to have worried you. :( I was sure I had a CBC done fairly recently, but after checking MyChart and calling my docs, I haven’t had one done since at least before 2009. So I’m sure the hematologist will be ordering one. My hct has always run on the low normal side, but I never paid attention to hemoglobin.

                I woke up this morning, got into my recliner, and nodded off to sleep again almost right away. Typical morning for me. Have to get ready for work soon.

                This almost reminds me of when I had mono back in my 20’s, although that exhaustion was more debilitating (was bedridden for 6 weeks) but it’s the closest thing I can compare it to.

                How long did it take you to get back to normal after your energy level dropped?

                I’ll check in Friday to let everybody know what the hematologist said. I’m sure it’ll be next week before the lab results are back and he knows more, though.

                Amy

                amosmcd
                  Post count: 231

                  Hi, Gabe!

                  So far no change in how I feel with the increased dose, but that of course can take a while. I’ve been hypo before and never felt this bad, but maybe it’s different once the thyroid is out.

                  I am really surprised that I have not gained weight at all. I’m still a couple pounds underweight, but my weight has been the same for almost a year since the “Great Graves Weightloss” of last summer.

                  I hope you get more energy soon, too. I really appreciate your support!

                  Amy

                  amosmcd
                    Post count: 231

                    Hi, Sue!

                    Your post really cheered me up! Thank you!

                    I read where anxiety and depression can be caused or worsened by low ferritin. I think for me it’s more just seeing everything I need to get done and just can’t do it. Anything for anxiety would just sedate me and make me feel worse. If a medication can make a person drowsy, it tends to knock me out.

                    I’m feeling a little less anxious since making the appt with the hematologist. Hopeful I’ll get some answers!

                    Take care,
                    Amy

                    amosmcd
                      Post count: 231

                      Hi, Kimberly!

                      I’m hoping this will pass soon, too! Thanks for always being there with your support!

                      Amy

                      SueAndHerZoo
                        Post count: 439

                        Glad that at least the increased dosage isn’t increasing your anxiety…. I probably would have brought some on just by worrying about it getting worse. You know how anxiety is once it takes hold… it spirals out of control and we keep feeding it so it a trap that’s hard to get out of.

                        Please keep us posted with updates…. they are SO HELPFUL to all of us other TT’ers.

                        Sue

                        amosmcd
                          Post count: 231

                          Well, saw the hematologist this morning. Since he’s also part of an oncology group, they have a lab right in the office that runs lab results in minutes, so I got my CBC results back right away. My hemoglobin and hematocrit are normal, so in spite of the low ferritin, I am not officially anemic. That said, the doc said he was fine with trying an iron infusion (4 treatments) to see if it helps. But he doesn’t really think that’s the reason for my fatigue.

                          He of course lists all the reasons that I could be feeling this way–stress, grief, depression, poor quality sleep, and of course–thyroid med adjustment issues. I would have to say that since this started pretty quickly after my TT, that the med adjustment issues are the problem. I had all the other stuff before that, and really was feeling very good at the time of surgery. I think all the other issues are now magnified by my not having any energy to deal with things and that makes me anxious….and off we go!!

                          So we’ll see if the iron helps and then if not, thinks looking into the sleep issues (waking up often at night, frequently having nights where I have trouble going back to sleep if I wake up) maybe getting a sleep study to see if I snore. I have never been told that I snore. My boyfriend had really bad sleep apnea, and snored loud enough to shake buildings, so I think my boys would notice if I snore. :D

                          I’m not surprised that the doc didn’t find anything specific. It’s discouraging, but I’ve just got to keep plodding forward, hoping something will get adjusted so I’m feeling better. Feeling permanently better was why I got my thyroid out, so I feel like I’m starting from scratch. Makes me just want to cry. So I guess I’d better put on my big girl pants and suck it up. Nothing else to do!

                          Thanks for being there and listening.

                          Amy

                          SueAndHerZoo
                            Post count: 439

                            Damn, I was battling with mixed emotions as I cautiously read your update …. kinda wanted them to find something wrong but of course didn’t want them to find something wrong!

                            I know you recently raised your Synthroid but have you and your endo discussed adding some T3 to the mix?

                            By the way, you do NOT have to suck it up and put on your big girl pants… You can darned well sit down and have a good cry if you want. You have on those pants enough …. take them off and give yourself permission to feel sorry for yourself once in a while. This has not been an easy battle and no one could blame you for feeling discouraged and depressed.

                            That being said, I KNOW you are going to find the answer and feel better soon so try to remember that you will look back on this someday soon and be so relieved it’s over.

                            Sue

                            Kimberly
                            Online Facilitator
                              Post count: 4286

                              Thanks for the update, Amy. Sorry this latest appointment didn’t shed a lot of light as to what is going on, but we are all interested to hear how the iron infusions go…definitely keep us posted. Perhaps the sleep study that you mentioned might finally provide some answers.

                              Hoping you can get some relief soon…take care of yourself!

                              amosmcd
                                Post count: 231

                                Sue, your reply made me cry! Which is a good thing!! And it made me laugh, especially about the part of wanting the doc to find something, but not really–my feelings exactly! So I’m both relieved and annoyed.

                                At the moment I’m laying in bed, my heart rate is 100–just because I ate 2 choc chip cookies a couple hours ago. At least that makes the most senses. Also, having palpitations. I just took some Atenolol, so that should knock it down. I’m thinking this is too high an increase of the Levothyroxine. I have a party to go to tomorrow so I’m going to skip my Levo dose tomorrow. I’m tired of feeling like this. I’m calling the endo on Monday. I don’t think adding T3 would be good at this point. I don’t know. My endo wants to wait before trying it.

                                I’ll keep you updated.

                                Thanks again, Sue!

                                Amy

                                amosmcd
                                  Post count: 231

                                  Hi, Kimberly,

                                  My insurance requires pre authorization for iron transfusions, so it might take a few days to get that after Monday. The infusions only take around 5 minutes. He told me what type but I can’t remember. It’s the least likely to cause an allergic reaction.

                                  Anyway, I’ll let you know how it goes once I start.

                                  Amy

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