Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
    Posts
  • Alyk
      Post count: 13

      I had lab work at my last appointment – Free T4 is 1.06, TSH is 0.68. These are the only labs they did. Ref. ranges – Free T4 .89-1.76, TSH .35-5.50. These labs are very close to my old labs that were from 2 years ago (Free T4 was .9, TSH was .48), and a month prior to that they were (Free T4 .99, TSH .66). Can anyone help me to understand what my latest labs mean? My Free T4 has increased slightly from what it was 2 years ago, and my TSH is pretty much right in the same range. This leads me to believe that my Tapazole hasn’t done much (low dose of 10 mg/once per day).

      I did not have labs drawn immediately prior to beginning meds for hyperthyroidism (which was diagnosed based on symptoms and ultrasound alone). There are other factors involved that could be causing my symptoms (anxiety, heart palps, heart racing), and I can not say that these problems have improved much since I started meds.

      I questioned initially if I was actually hyperthyroid, and now that I’m seeing my levels are so similar to what they were 2 years ago on such a low dose of Tapazole, I’m seriously questioning whether the Tapazole was ever needed in the first place.

      Any insight? This med has made me nervous from the get-go, and if I don’t need to take it, I really do NOT want to :/

      Kimberly
      Online Facilitator
        Post count: 4294

        Hello – We’re fellow patients, not doctors, so we can’t give medical advice or interpret labs. However, a couple of thoughts…

        1. How are you feeling? The more important measure is your T4, as TSH can stay suppressed for quite some time in Graves’ patients. Some patients find that they feel their best at the top of the range, middle, etc.. If you aren’t feeling well on your current dose, you should certainly talk to your doctor.

        2. Dosing with Methimazole/Tapazole is part art, part science, and it can take some tweaking to find the sweet spot that will normalize your labs *and* get you to feeling well. I’ve been on Methimazole for going on 5 years, and I’ve spent most of that time alternating different doses on different days (for example, 5 mg vs. 7.5 mg every other day), at my doctor’s advice.

        3. Have you had antibody levels tested? (TSI, TRAb). If you were to come off of the meds while your antibodies were still raging, a recurrence of your hypER symptoms would be very likely.

        Take care!

        Carito71
          Post count: 333

          Hello Alyk,

          To me, your #s look to be within normal range. How were you feeling 2 years ago when you had the baseline labs done? You said they are no that different but now you are having symptoms so, did you have symptoms 2 years ago? What did your ultrasound say? Was your thyroid enlarged? Did you have nodules?

          I agree that looking at the TSI, TPOab, and other immune related thyroid tests might give you some answers. I don’t think I would want to stop Rx if the TSI was elevated.

          Have you had other labs done to make sure nothing else is going on that could be causing your symptoms?

          10mg/day sounds very minimal to me but that is b/c I’m on a 30mg/day. 10mg/day even though small, could have still caused your #s to get lower but there is no way to tell as you mentioned.

          Are you taking a beta blocker for your racing heart/palpitations? I know that having a fast heart rate was making me very anxious.

          What did your Dr. say about your new #s?

          Caro :)

          Alyk
            Post count: 13

            I feel fine besides still having some heart palps/racing heart moments and anxiety, but that’s pretty typical for me. I have had anxiety for years, and I’ve been under a lot of stress lately. I did not have heart palps and racing 2 years ago when the baselines were done. It just so happens that my original endo appointment last month, I had just quit smoking 2 months prior and was under lots and lots of stress, and was pretty much having mid mental breakdown. He automatically assumed hyperthyroid, and I’ve questioned it ever since. The mental breakdown issue has resolved, but I don’t feel like it was due to the Tapazole so much. I feel fine overall.

            Have you had antibody levels tested? (TSI, TRAb). **Yes, and they are normal.

            Ultrasound was also the same as it was 2 years ago. I do have nodules, but they have not changed. My thyroid is enlarged and has been since I was in my early teens.

            I haven’t really had any other labs besides the general workup from my family doctor, all of which were normal.

            I already questioned my doctor once and I felt like he kind of took it personally and he warned me that he wouldn’t recommend going off the Tapazole, but if I did, to take beta blockers. I picked up the beta blockers, but decided to wait for my labs to come back before I made my decision. I don’t want to take the beta blockers because I’m afraid I’ll have to continue to take them to regulate my heartbeat if I begin now. I could email the doctor to question him again now that I’m armed with my lab results, but he’ll probably tell me I have to come in to the office and pay another copay to discuss it. Urgghhhh. I’ve been there twice in the last month already. I have an appointment scheduled in September currently. I guess it wouldn’t hurt to wait for then… I just hate to think I might be damaging my liver with this tapazole for nothing!

            Thanks for your responses, ladies! This is all so stressful!!!

            Alyk
              Post count: 13

              Another possibility that I meant to say in there when I was talking about quitting smoking, is that I’ve been using nicotine replacement. That in itself can cause heart palpitations and racing heart, so I cut my level down and am currently using 6 mg nicotine (started at 24 mg. the highest level – I’m using an e-cigarette). I have noticed that the frequency of palpitations is lower now that I’ve dropped to 6 mg. I also cut out almost all caffeinated beverages (I might have one twice a week now where before I was drinking caffeinated soda all day every day). So as you can see, there was probably more to it lifestyle-wise than just my thyroid. My doctor is aware of these things, but he brushes them off. It seems he’s made up his mind.

              snelsen
                Post count: 1909

                Hi, I think you have listed some very good possibilities in your last post.
                I know the nicotine patches increased heart rate, and generally rev you up a bit. So that makes perfect sense. Same with caffeinated beverages. And you know both these things, too.
                I do think there is a lot of logic to what you have said. It makes a lot of sense that your heart rate accelerated, that you had some palps (also called PFC’s)

                It sure would be nice if your doc would have a collaborative discussion with you, show some interest in your thoughts.

                Re liver damage, that is more of a lab to watch when an ATD is first initiated. You’ve been on them a couple years, and I’m thinking that it is fine to wait until September for you labs and appointments. If you can make this happen, do the two following things:
                -call the office, ask to have the lab requisition ready for you to pick up. Get your labs ahead of the office visit so you have something to discuss.
                -also, say something like, “i’m just checking to be sure that the liver function panel is on this set of labs, for it is time to have it drawn and it will save the need for another lab draw.”
                Another suggestion is for you to sign whatever medical release form they have in the office (and they required by law to have them) At the part where it says where you want the records sent, you write “myself, for my personal file,” and write your name there. Provide your address, etc.
                Where it asks you what you want sent, write or check “all labs, dictated office visits, procedures, and other tests.”

                The above may be redundant if you are already doing all of it. In my world, I get copies of everything, and I can access my entire medical record at two of the facilities. When you read them, you find out all kinds of interesting stuff, including, misunderstandings, inaccuracies, and things that need clarification from you.

                Congratulations on the smoking cessation. I am so very proud of you had happy for you. I know several people on the forum have quit, including Kimberly, I think. It’s big stuff. It is quite amazing how you can tell a smoker when you are not a smoker.
                Do write again! And…how do you feel now?
                Shirley

                Alyk
                  Post count: 13

                  To clarify, I just started the tapazole about 6 weeks ago. My doctor doesn’t seem concerned about liver damage at all, even though I’ve expressed that concern multiple times. I’m going to request they check it on my next labs though.

                  If I fill out the medical release form, will they just automatically send me everything? I’ve been asking for copies of everything at every visit (and calling to get those things I can’t get when I’m there) and I feel like I’m driving the office staff crazy. I know I have a right to these records for my files, but I feel bad making them jump through hoops for me! Also, I did notice some inaccuracies in the doctors notes from my last visit (he put down symptoms that I never had!) Should I ask them to fix it?

                  Thanks for the congrats on quitting smoking! Today marks 100 days :) I’m more proud with each passing day!

                  Carito71
                    Post count: 333

                    Alyk,

                    Yes, congratulations!!!!! I’m so glad you made the decision to stop smoking. I have never smoked and I’m very allergic to it (I’m allergic to many things) but from what I hear, it is very had to stop, so … congrats … keep it up.

                    So glad the antibodies tests were all normal. It sounds like your only thyroid problem is the nodules.

                    My one concern is that your #s are close to where they were 2 years ago with the Tapazole 10mg/day so even though the amount is small maybe it is keeping your #s there. Since there are no labs from right before you started taking the Rx there is no way to know. The good thing is that your antibodies are normal (TSI, etc). Since they are normal there might be a lesser risk with you stopping to see if your #s change. You can run this by your Dr. at your next appointment.

                    As for the liver, 10mg/day is a small dose. I’m on the 30mg/day and I believe the max is 60mg/day. But we are all different and even a smaller amount can affect some people more than others. You said that you had a general workup from your Fam. Dr. and what I think you could do is call your Fam. Dr.’s nurse and ask for your liver function results, which were probably done with the general workup stuff. If ATL, AST is normal, I wouldn’t worry too much about the liver. If you are not jaundice, if your stool is not acholic (light color), you are not nauseated, vomiting, or have pain in your right upper quadrant then I wouldn’t worry too much about the liver.

                    As for the inaccuracies in the doctor’s notes, yes, ask them to fix them. They made some mistakes in mine at my old Endo’s office (no longer my Endo). They even put in my file that I had hypothyroidism. So yes, they need to have the correct information in the notes so that the Dr. can make the correct decisions for your treatment.

                    I hear you about the co-pays. I have to pay a lot each time I go see my Endo and the ultrasound was super expensive. I pay a lot for medical insurance, which makes it even worst. One would think that one would not have to pay co-pays when paying so much for the medical insurance.

                    Caro :)

                    adenure
                      Post count: 491

                      I second the request for liver enzymes being checked. Yes, it is a very small chance, but it can happen. I was on 5 mg. daily and in 7 weeks (when I got my 1st labs done) my enzymes were 8 times the normal range. I had a baseline before starting methimazole, and they were normal at that time. I’m sensitive to medicine in general, so I asked my endo. to check my liver just bc I wanted to be sure- glad I did! I didn’t have any symptoms like fever, jaundice, dark urine, sore throat. Also, as soon as I stopped methimazole, my liver enzymes returned to normal- no problem at all. My GP even ordered an abdominal ultrasound to be sure, and I was totally fine. So, if you happen to be part of the “lucky” 1% :P, fortunately the liver regenerates quickly. Better to be safe, right? An easy lab to do.

                      Alexis

                      Also CONGRATULATIONS on 100 days! Well done!!! 😎

                      snelsen
                        Post count: 1909

                        They know you have a right to them, too! Sometimes it is difficult to get the record as you walk out of your appointment, because depending on the system they are using, they might need to dictate the visit. Or, they might have entered in the computer during your visit. It is absolutely right that there will be mistakes. Just think of any conversation you have with anyone. There is plenty of room for making assumptions, misunderstandings, more and more.
                        But, they definitely need the paperwork that I mentioned in my previous email. That is part of the HIPPA, privacy information act, so you have control over who has your medical information. So you are the boss of that (except insurance companies, and a few other legal exceptions)
                        All for now. Arrived in Sun Valley, it is beautiful here.
                        Shirley

                      Viewing 10 posts - 1 through 10 (of 10 total)
                      • You must be logged in to reply to this topic.