Thyroid Q and A or Running Hot and Cold

Thought I'd give an update (Read 392 times)

    It's been awhile and some stuff has been gonig on for me, so I figured I'd jump in here with an update. After I "mysteriously" went from hypo to hyper in 2007, I was taken off all thyroid meds. It took a few months for my TSH to work it's way back into the normal range, and then it started to slowly climb again. So I went from a TSH in the upper 1.x's in 2008 to 2.5 in 2009, to 3.0 in 2010, and finally to 3.8 last year. The past 3 years I've felt pretty awful- hair falling out, mind fog, mild despression/disinterest. I kept arguing with my endo that I didn't feel like myself and that it was obvious that my TSH was climbing again, but she wouldn't treat me until I went over the lab standard of 4.0. Finally last fall near the upper end of the range I convinced her to let me try synthroid again. She put me on a half pill of 25 mcg a day in October and my bloodwork is finally leveling again.

     

    I met with her today and my TSH is 1.7. FT4 is smack in the middle of the lab range. (Haven't tested FT3 in awhile). But I feel great. I can't believe how much one half a a small dose has made me feel like myself again. I KNEW I functioned best in the 1's, and know my endo is in complete agreement that it was the best move to go on the small dose. I wish she had agreed a few years ago, but I am really grateful that she listened now at least. She's happy that my last 3 labs have been level and doesn't want to see me again until December.

     

    The weird thing is she finally "diagnosed" me. I had a thyroid sonogram last month and I have a non-homogenous thyroid surface, but no nodules (no change from my last sonogram either). In the 5 years I have been seeing her she never gave me a diagnosis, but today she said that I haave Hashimoto's Thyroiditis and I am hypo. I knew the hypo part, but I guess the uneven surface is the thyroiditis (???).

     

    Basically I'm in a good place. Just keep monitoring TSH, FT4 and occasional sonograms. She said that eventually I will probably develop nodules and have thyroid failure, but we will just keep watching for now. She did say that I need to be really careful when I decide to have kids- no accidental pregrancies here! She said I really need to plan at least 6 months in advance, start taking a prenatal with at least 150% iodine, and make sure my TSH is level below 2.0 b/c research shows that that level is best for baby development. She also mentioned that with high TPO antibodies I am at a higher risk for miscarriage. She said that during pregnancy most people need at least a 30% increase in Synthroid, and that it has to be monitored every 4-6 weeks, especially early in the pregnancy.

     

    That's all from here- how's everyone else doing?

      Hi Shauna and thanks for the update. Glad you're feeling great now and your doc is finally working with you. Also nice that you finally have a definitive diagnosis.

       

      I've been stable for many months now. I take 100 mcg 5 days a week and a half tab on Thurs & Sun.  I feel great and my running is going well.

       

      I'd love to hear others updates too.

      Use your momentum...keep going.  You know you can make it.


      The Crap Whisperer

        I'm glad you are both doing well Smile Shaunna, its funny you mention getting a diagnosis as I have never actually had one other than "hypothyroidism". I'm currently taking 88 mcg Levothyroxin daily and doing well. I haven't been tested for about 9mo but still feel good...last test was 1.5. I did find it odd that my doc didn't really worry about a cause though...wonder if I should push the issue?

        Being the best tiny spec that I can be!


        Oh roo roooo!

          I'm glad you are both doing well Smile Shaunna, its funny you mention getting a diagnosis as I have never actually had one other than "hypothyroidism". I'm currently taking 88 mcg Levothyroxin daily and doing well. I haven't been tested for about 9mo but still feel good...last test was 1.5. I did find it odd that my doc didn't really worry about a cause though...wonder if I should push the issue?

           

          I never had a diagnosis other than "hypothyroidism" either.  The reason given for this is that the treatment is going to be the same no matter what, so what does it matter what kind or why?  Well, it matters to ME, as if this is a symptom of some other problem, I would like to get to the bottom of it, not just keep on covering it up.

           

          Have you checked out this book?  http://www.thyroidbook.com/  My library had it and I found it very interesting and informative, not your standard "how to live w/hypothyroidism" book. 


          The Crap Whisperer

            I never had a diagnosis other than "hypothyroidism" either.  The reason given for this is that the treatment is going to be the same no matter what, so what does it matter what kind or why?  Well, it matters to ME, as if this is a symptom of some other problem, I would like to get to the bottom of it, not just keep on covering it up.

             

            Have you checked out this book?  http://www.thyroidbook.com/  My library had it and I found it very interesting and informative, not your standard "how to live w/hypothyroidism" book. 

             

            I also suspect that is why they didn't try to diagnose the issue but it does worry me that all I got was a diagnoses from bloodwork. I hope there is no other issue. I also have only seen my primary care doc, not an endo. Thanks for the book suggestion, I will see if I can find it!!!

            Being the best tiny spec that I can be!

              My psychiatrist wants me tested for Hashimoto's and my PCP says it isn't necessary because it won't change my treatment. That pissed off my psychiatrist. I plan to ask again when I next see my PCP for either a regular appointment or to check thyroid levels.

              Kerry

              HF #1048

              Concept2 - Marathons Rowed April & May 2013

               

               

               

               

               


              Oh roo roooo!

                My psychiatrist wants me tested for Hashimoto's and my PCP says it isn't necessary because it won't change my treatment. That pissed off my psychiatrist. I plan to ask again when I next see my PCP for either a regular appointment or to check thyroid levels.

                 

                See, the more I learn, the more nuts I think this "it won't change the treatment so who cares WHAT caused it" approach is.  From what I have read, apparently a lot of folks with Hashimoto's, which is an autoimmune disease, often have sensitivities to other things, most often wheat.  Some people have a good deal of success w/eliminating gluten from their diets--and wouldn't that be worth it to be rid of A) the symptoms and B) the need for docs and meds?  I'm 4 weeks into trying this myself.  What's the worst that can happen--I miss out on eating bread for a while?   There are other thoughts out there on possible causes, too. 

                 

                I just really think it makes sense to look into why, not just fix the symptoms. 

                  I started gluten free late last week when the psychiatrist asked me too. It isn't too bad - definitely a change, but one I can make. But yeah, I agree - it is important to know what exactly you are dealing with because there is so much more that we can do for ourselves beyond just taking a pill.

                  Kerry

                  HF #1048

                  Concept2 - Marathons Rowed April & May 2013

                   

                   

                   

                   

                   

                    Nice to hear the updates from eveyone! Interesting how many of us really didn't have a diagnosis.

                     

                    My endo didn't talk about Hashimoto's being related to other autoimmune issues- definitely good to know, esp for genetic reasons since Celiac runs in my husband's family.

                     

                    Kerry- good luck with the GF. Did you have a blood test or are you just trying it? I keep trying to push my husband to give it a try, b/c he has bad arthritis and his mom and sister are both celiac. He had the blood test and biopsy and both were negative. So he doesn't feel like it is worth the effort. But I keep saying that if you can treat yourself without meds it is worth a shot!


                    The Crap Whisperer

                      See, the more I learn, the more nuts I think this "it won't change the treatment so who cares WHAT caused it" approach is.  From what I have read, apparently a lot of folks with Hashimoto's, which is an autoimmune disease, often have sensitivities to other things, most often wheat.  Some people have a good deal of success w/eliminating gluten from their diets--and wouldn't that be worth it to be rid of A) the symptoms and B) the need for docs and meds?  I'm 4 weeks into trying this myself.  What's the worst that can happen--I miss out on eating bread for a while?   There are other thoughts out there on possible causes, too. 

                       

                      I just really think it makes sense to look into why, not just fix the symptoms. 

                       

                      So what's your plan? You've been gf for 4 weeks. Will you get your levels tested soon? Do you feel a change?

                      Being the best tiny spec that I can be!


                      Oh roo roooo!

                        So what's your plan? You've been gf for 4 weeks. Will you get your levels tested soon? Do you feel a change?

                         

                        I just had blood drawn on Monday for thyroid labs--we'll see what that looks like.  I have required steadily increasing doses of Synthroid since I was first diagnosed 6-7 years ago.  If I hold steady and don't require more, even THAT would be an indicator that things are improving, in my book.  However, the one confounding variable here is that I switched to Levothyroxine (generic, where Synthroid is name brand)  several months ago simply b/c the name brand cost $30 a month and the generic is $4.  (That's b/c I anticipate being either out of work or in a job paying significantly less by summer.)  People sometimes require quite a different dose of generic vs name brand thyroid replacement, so these lab results may or may not be revealing.

                         

                        Do I feel different?  Yes, in 2 major ways.  The biggest one is that I am not hungry all the time, and I mean ALL the time, like I used to be.  That alone is an enormous and wonderful change.  The second one is that I am sleeping way better, even tho stress is higher than normal lately.  To me, these are both important and sufficient to keep me gluten-free for at least a while longer while I continue to tweak and observe. 

                         

                        Don't know if anyone has posted these sites here, but in case anyone has not seen these:

                        http://chriskresser.com/thyroid  and  http://www.stopthethyroidmadness.com/

                         

                        You may feel some of the info at these sites is over the top or wacko, and I'd have to agree.  However, some of it does seem reasonable to me and I'm trying it.  For instance, have been supplementing with selenium and iodine for about a month or so now as well as taking a probiotic daily and/or having some kefir or yogurt daily.  I've also cut back on caffeine (altho I was never a really heavy coffee drinker anyway and do not drink soda at all) and that seems to have helped also--there is some info I have seen that adrenal stress can also contribute to thyroid problems/symptoms.

                         

                        I also started with low HR training (Maffetone) in January.  The intro to his "Big Book of Endurance Training and Racing" seems as if his method is meant to address pretty much what I have experienced in terms of no real improvement over a 4-year period (and as a new runner, I should be seeing big changes but they simply are not there).  I lurk regularly in that forum here, also. 

                         

                        Life changes have intruded into my running this past week or so and I expect this to be the case for another week, hopefully less.  Taking care of what I have to take care of and then back on track is the plan. 

                         

                        Glad to see we have some discussion going on--I place more stock in what other runners have experienced than what the "average" person says, so thank you to all who are chatting here!

                        Elly.


                          I've been lurking here quite a while, and frankly, most of you could be my daughters.  At my age, one would think I had this all worked out by now. 

                           

                          I've been on Synthroid  around 30 years.  Frankly, I never felt any difference. I would complain to my doc about weight gain, and she would up the dosage to 1.25 mcg.  Then I couldn't swallow well, and a new doc lowered the dosage, lowered it to 1.00 mcg.  But I still gained weight and had all the symptoms of lethargy, constipation, hair loss ... on and on. 

                           

                          Of course, I thought these symptoms had to do with my getting older.  I did manage to take off 25 pounds a few years ago, but I ate VERY little and I got slower and slower and slower. 

                           

                          Last year, when I started gaining weight again and I asked for help.  She started me on Cytomel, first 5 mcg, then 10 mcg.  I was delighted not to be constipated anymore Big grin but I didn't lose weight.  I also had "hot flashes"  not good because I am 65 years old and horribly embarrassing in social situations.  She lowered my Synthroid to 88 mcg, then again to 75 mcg. ... along with the 10mcg Cytomel.  Now I am gaining weight, constipated and freezing.  I wonder if it has to do with the winter months, but I doubt it. 

                           

                          I don't understand why having a gluten free diet has anything to do thyroid disease, and I am wondering if this is just the current fad diet craze.  It frankly does not sound like fun. 

                           

                          Y'all seem to have your act together much more than I.  I guess my mind is in a fog, too. 

                          http://www.ellyfosterphotography.com/

                            Nice to hear the updates from eveyone! Interesting how many of us really didn't have a diagnosis.

                             

                            My endo didn't talk about Hashimoto's being related to other autoimmune issues- definitely good to know, esp for genetic reasons since Celiac runs in my husband's family.

                             

                            Kerry- good luck with the GF. Did you have a blood test or are you just trying it? I keep trying to push my husband to give it a try, b/c he has bad arthritis and his mom and sister are both celiac. He had the blood test and biopsy and both were negative. So he doesn't feel like it is worth the effort. But I keep saying that if you can treat yourself without meds it is worth a shot!

                             

                            I had the blood test for Hashi's a few days ago and was hoping to hear results today. My psychiatrist asked me to go on it last week because of a few things:

                            • I had colitis last fall and the cause was never determined. He wonders if I am sensitive. 
                            • I have had bowel troubles for a long time (since middle school).
                            • Since I have hypothyroidism, he thinks it is sensible for me to be tested for Hashi's.
                            • Regardless of the test, he thinks it might make me feel better, which might alleviate the need for other medicines that I take for depression/anxiety and might also give me some more energy. He has asked me to do it at least until he sees me again in June. Then we can go from there. A result from a Hashi's test would also give us a better plan of action.

                            The psych has Hashi's and eats gluten-free, so he knows of what he speaks in terms of each issue, which is great.

                             

                            Frankly, my hypothyroidism was only diagnosed when a mental health counselor asked my PCP to give me a blood test about 10 years ago. I had complained for years, to multiple PCPs, about various symptoms (mental, physical and emotional) that are textbook hypo but none of them caught on - EVEN THOUGH MY DAD ALSO HAS HYPO. Go figure. 

                             

                            ----------------------------------

                            MTA: so the doc just called and...get this....(GRRRRR)

                             

                            So, I just got a call that my synthroid is too low and they need to bump it up. 

                            However, that was not really the reason I got the blood draw, so I asked about the Hashi's test. I was told they didn't have an answer for this, and it was implied it may have not been checked for. I told her that was the reason for the test request and was told that the doctor had indeed been given the correct message (including the term "Hashimoto's Disease") but that they didn't know and she seemed taken aback that I asked. HUH? Why would I not get the test for which I requested, ESPECIALLY if they already know my thryroid is wacked? I asked her to find out and call me back on next steps - either to find out the full results or to go back to get the actual test.

                            GRRRRRR....................

                            ------------------------------------

                            MTA x2:

                            The doc tried to argue again that they didn't need to do the test as it wouldn't change my treatment. I told them that I wanted the test, I had now requested it for a third time and my psych twice, and I insisted on the test. I reiterated that while it may not change the pill I am taking, it might arm me with the information I need to do somethings (diet, exercise, etc.) that will allow me to feel better.

                            Kerry

                            HF #1048

                            Concept2 - Marathons Rowed April & May 2013

                             

                             

                             

                             

                             


                            Oh roo roooo!

                              I don't understand why having a gluten free diet has anything to do thyroid disease, and I am wondering if this is just the current fad diet craze.  It frankly does not sound like fun. 

                               

                               

                              Well, your thyroid symptoms sound pretty darn unpleasant, too! 

                               

                              As mentioned earlier , a large share of thyroid problems are caused by an autoimmune disease, Hashimoto's thyroiditis.  A large number of those with Hashimoto's thyroiditis are also sensitive to gluten--hence the gluten-free diet.  If the gluten is firing up your body's immune system to attack, then the thyroid suffers also.  Now, this may NOT be the case for any individual, but since the odds are in favor of it, what's to lose?  I'd surely take a life w/o bread if it means I can feel decent again. 

                               

                              If you have a chance, check into the websites mentioned above.  See if you can find Dr. Kharrazian's book at the library.  To be perfectly honest, I didn't start to get how all this might fit together until pretty recently also.  It finally started to click in the last several months.  I'm not willing to accept that the rest of my life will be spent being fat, tired, cold and unhappy, so I'm going to keep on reading and keep on trying things...


                              The Crap Whisperer

                                I just had blood drawn on Monday for thyroid labs--we'll see what that looks like.  I have required steadily increasing doses of Synthroid since I was first diagnosed 6-7 years ago.  If I hold steady and don't require more, even THAT would be an indicator that things are improving, in my book.  However, the one confounding variable here is that I switched to Levothyroxine (generic, where Synthroid is name brand)  several months ago simply b/c the name brand cost $30 a month and the generic is $4.  (That's b/c I anticipate being either out of work or in a job paying significantly less by summer.)  People sometimes require quite a different dose of generic vs name brand thyroid replacement, so these lab results may or may not be revealing.

                                 

                                Do I feel different?  Yes, in 2 major ways.  The biggest one is that I am not hungry all the time, and I mean ALL the time, like I used to be.  That alone is an enormous and wonderful change.  The second one is that I am sleeping way better, even tho stress is higher than normal lately.  To me, these are both important and sufficient to keep me gluten-free for at least a while longer while I continue to tweak and observe. 

                                 

                                Don't know if anyone has posted these sites here, but in case anyone has not seen these:

                                http://chriskresser.com/thyroid  and  http://www.stopthethyroidmadness.com/

                                 

                                You may feel some of the info at these sites is over the top or wacko, and I'd have to agree.  However, some of it does seem reasonable to me and I'm trying it.  For instance, have been supplementing with selenium and iodine for about a month or so now as well as taking a probiotic daily and/or having some kefir or yogurt daily.  I've also cut back on caffeine (altho I was never a really heavy coffee drinker anyway and do not drink soda at all) and that seems to have helped also--there is some info I have seen that adrenal stress can also contribute to thyroid problems/symptoms.

                                 

                                I also started with low HR training (Maffetone) in January.  The intro to his "Big Book of Endurance Training and Racing" seems as if his method is meant to address pretty much what I have experienced in terms of no real improvement over a 4-year period (and as a new runner, I should be seeing big changes but they simply are not there).  I lurk regularly in that forum here, also. 

                                 

                                Life changes have intruded into my running this past week or so and I expect this to be the case for another week, hopefully less.  Taking care of what I have to take care of and then back on track is the plan. 

                                 

                                Glad to see we have some discussion going on--I place more stock in what other runners have experienced than what the "average" person says, so thank you to all who are chatting here!

                                 

                                Sounds like you have a lot going on!! I started taking levothyroxin from the get go, the $4 price tag is nice Smile Works well for me though I know some people do better on some drugs than others. I hope the cheaper one works well for you!

                                 

                                I am going to get through my nieces b-day party this next weekend (pizza and cake) and then start GF. I feel like I am mentally prepared to give it a go...and I like the idea of being less hungry. I eat All.The.Time!!!

                                 

                                 

                                Regarding the probiotic. I have gotten lazy with it but I started on one when I had to take an rx of augmentin (notorious for gastric distress). Anyways (and this is TMI) I was soooo regular and productive when I was taking the probiotic! Then I stopped taking it for a week and couldn't go for days,you know how that goes!  

                                 

                                You should check out my log - I have been doing MAFF since Aug. I was always getting injured and slowing waaaaay down has been a tremendous help with that and my mileage is much higher than I used to be able to do. I run between 26 and 30 mpw and I used to get to about 20 mpw and then would get hurt. The downside is that I am very very slow but I started adding some intervals into my long run and it seems to be helping a little. I'm just happy to feel like I can run when I want without having to worry about being hurt.

                                Being the best tiny spec that I can be!