Thyroid Q and A or Running Hot and Cold

12

Progress? (Read 541 times)

    TSH is now 0.02 - endo just shakes her head - has no explanation, it's been 13 months - my guess is it's not ever coming back up. She said she has watched me monthly and in all the labs and her clinical observations - I have not shown any signs of hyperthyroidism... This is really hard for her, as she believes that TSH is gold standard - and maybe it is for many people - but not for me. But - she is still not a fan of FT3 levels. Mine are still 290 - drop of 60 points - and I am feeling it. I brought up cytomel again - and was shocked that she agreed that we could give it another cautious try in the future - she will not use armour. In my case it's just as well - I'm so sensitive, it will be easier to fine tune the T3 with a separate pill. Anyways, hanging in there - next labs in about 3 weeks.... Hope everyone else is feeling good and ready for the holidays Smile

    Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




    Go With The Flow
    Thyroid Support Group

      hmmm.... that's interesting. I really wonder if TSH is the gold standard. So many doctors only test that, but I think for patients whose symptoms aren't better even with a good TSH number, there needs to be more to look at. With your FT3 so out of whack, are you considered hypo just with very low TSH? What are your T4 numbers like? Are you feeling awful or just off sometimes? It's great that you have a good endo who is willing to work with you. Are you doing any changes with the cytomel between now and the next labs? I was under the impression that it took at least 6 weeks for any drugs to impact thyroid hormone production.
        My FT4 is at 2.3 with a normal range of .8 - 2.6 I feel better when it is down around 1.6 - 1.8. That's the point I was trying to make with her - my FT4 is high to be having a FT3 that low. But, since she doesn't "believe" the FT3 numbers are significant (and still tried to talk me out of it - but I said I would pay for the test if I had to) - if she goes the cytomel route, if will be more to try to accomodate my desire to be better and not because she really believes it will help - I know that's confusing, but I hope you understand what I mean. No change in my meds for now, we'll see what the labs look like in January. I'm not on cytomel yet - still a little leary after last time, but it will be baby steps with the doses and probably won't try until Feb. I found this book yesterday - GET IT - you won't be sorry - written by a board certified endocrinologist who also happens to have hypothyroidism. I haven't finished it yet - but it gives excellent explanation on all the tests. It also explains why some docs are so inflexible about cetain things when it comes to thyroid. Thyroid Paradox Thanks for following along with me, Shaunna - it really helps to know you are out there Smile

        Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




        Go With The Flow
        Thyroid Support Group

          I agree with you that your FT4 is too high for that kind of FT3 number. It's frusterating that she doesn't think so, but it's good that at least she's willing to help you feel better regardless of your lab results. I will get that book. They have it in our local library system, so I'm putting it on reserve now. Thanks Smile Hang in there, and let me know what happens in 3 weeks. I'll update you on my own situation next Thursday. I have a feeling the labs are going to be screwy based on how good I feel right now, but I'm hoping that maybe they will fit in with the new docs thinking. BTW, I wonder how Emilee is doing with her pregnancy and thyroid. I was going to post and ask her, but she hasn't checked into this group in the past 2 months.
            I wonder if she is still in LLR? I don't hang out there too much anymore. I was wondering about her too.

            Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




            Go With The Flow
            Thyroid Support Group

              Next appointment is Wednesday...How about you, Shaunna?

              Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




              Go With The Flow
              Thyroid Support Group

                Next appt is the 28th....so I'll go get the bloodwork done next week. Good luck Wednesday Smile
                  So - actually stable - same dose - T3 levels have come back up to 337 and I was feeling better, so am not surprised. FT4 is still a little higher than I would like, but I will settle for adequate FT3's! Retest in 6 weeks. If I am still stable, I think we will finally be able to start spacing out the tests a little more.

                  Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                  Go With The Flow
                  Thyroid Support Group

                    Great news Cheryl!!! I'm so glad to hear you've been feeling better Big grin How's your leg doing?
                      It is good news Smile Leg - not so much. Follow up with the ortho on Friday....

                      Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                      Go With The Flow
                      Thyroid Support Group

                        Last test was 12/19. TSH was up to 6.9, so I am up to 100 mcg of Levothyroxin. Still not feeling much better. I get retested in about 4 weeks.
                          Hi Jen - no wonder you weren't feeling good Sad I usually notice a dose change in about a week - but it takes 6 weeks for your levels to be stable. When did you start the 100 - and how much of a dose increase is that for you? It's a slow, tedious process - but at least you are getting the dose increases you need. Hang in there Smile

                          Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                          Go With The Flow
                          Thyroid Support Group

                            Next appt is the 28th....so I'll go get the bloodwork done next week.
                            How did it go?

                            Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                            Go With The Flow
                            Thyroid Support Group

                              Last test was 12/19. TSH was up to 6.9, so I am up to 100 mcg of Levothyroxin. Still not feeling much better. I get retested in about 4 weeks.
                              How was your retest? Are you starting to feel any better?

                              Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                              Go With The Flow
                              Thyroid Support Group

                                How did it go?
                                Errr, I've been thinking about it all week, but haven't had time to say anything yet. My labs were... interesting. Free T4 and T3 are normal. TSH is 0.018. So, it's come up by 0.006 in the past month, but that's not much. Again she kept asking me if I was sure I wasn't taking meds. I assured her I wasn't, but I'm still not sure she believes me (and I don't know how to prove to her I'm not.) She even mentioned cases of people buying "natural" supplements at GNC and not realizing they had thyroid hormone in them. So next time I'm bringing the bottles of vitamins I take so she can check them out, though they are just CVS multivitamins. The problem is that if it was a case of my dose suddenly being too much back in the spring and pushing me into hyper, I should have leveled out more by now in the TSH since I stopped taking anything in October. She says it's good my T4 and T3 are normal (1.09 out of .61-1.76 for Free T4, and 3.7 out of 2.3-4.2 for Free T3), so that is doing alright, but the TSH is puzzling. She wants me to get a thyroid uptake test in 2 weeks. Her ideas are: 1) either I'm just really really unnaturally slow to rebound TSH levels or 2) I have secondary hypothyroidism, where the problem isn't with my thyroid, but with my pituitary gland. I'm going for a whole bunch more labs in 2 weeks again too, and testing my TSH, T3, T4, Serum cortisol, ACTH, Prolactin, FSH and LN, and a Basic Metabolic Panel. My latest labs seem to suggest that option #2 is the case (see this web site: http://adam.about.com/encyclopedia/infectiousdiseases/Hypothyroidism-secondary.htm). But the thing is with a pituitary failure, I should be having issues with production of other hormones too. We can't really tell with that though, because I'm on birth control, so the pill hormones override those produced by the body and I still have normal periods on the pill. If we can't figure out what's going on, I'll have to stop BC and see what my body is doing with that as well. Apparently the "cure" for secondary hypothyroidism is also Levoxyl, etc. She's puzzled because sudden pituitary failures are usually tied to viruses, and I haven't been sick at all. I told her I had a flu shot, but she doesn't think that would cause it even if it was a bad dose. The thing that scares me is that something is going on with me. I don't have extreme hypo symptoms other than fatigue and sluggishness, but I am developing all sorts of allergies. I've never had problems with any allergies before, but in the past few months I've developed a skin rash that travels around my body, coming and going with no understandable trigger or pattern. I saw a doctor about it today and he thinks that since my body is stressed with the other stuff going on that it is really sensitive, and something got into my bloodstream that is making it upset. Now the past 2 days, I have a new rash (little red and purple rings) on my belly. The doctor thinks that I've developed an allergy to nickel (and the rings are from the back of my jeans button). He gave me strong coritisone cream and Zyrtec, but really seems to think that something is going on inside of me that is causing my skin to freak out and react to things that have never bothered it before. That really scares me. Undecided I'm mad because I completely forgot to ask the doctor about testing the TSH by dialysis, but I have a feeling I'm going to be getting a lot of labs in the next few months so I'm sure I'll have the opportunity next time. Confused But I swear if one more doctor tells me I'm an "interesting case study" I'm gonna flip out.
                                12