Thyroid Q and A or Running Hot and Cold

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

    My consultation was very interesting. In a nutshell, I am having significant autoimmune issues including an angry gut (bacterial infection), general inflammation, etc. My parasympathetic and sympathetic systems are totally out of whack and the body is generally stressed to the max. 

     

    What I found stunning, especially with the para/sympathetic was how "spot on" the symptoms were. I was amazed at how insanely they described me. It was amazing to correlate the numbers shown in the multiple blood draws with how I really felt, and to have a very specific and understandable explanation as to how and why.

     

    I have to follow strict GF for life, going beyond the diet to include soaps, cleansers, deodorant, moisturizers, make up, shampoos/conditioners, etc. I also need to drop the following from my diet: milk, casein, cheese, casomorphin, multiple kinds of sweeteners and natural flavors, etc. I am also to try to avoid chocolate, and most of the grains as much as possible. Soy and iodine are no-nos too. There are many other items, but too numerous to mention.

     

    I will be receiving a protocol of medicines to follow this month. It is quite expensive, so I am stressed about $$ but know it is critical because I have been feeling so bad. After a month (basically when I return from vaca) they will do another blood draw, have another consult, and then adjust the protocol appropriately. The goal is simple - fix what is wrong and get to a correct normal. The protocols should not be indefinite, although some parts of it may be. 

     

    So I need to kind of take it in tonight and start fresh tomorrow. I am a little overwhelmed but more hopeful than I have been in a long time. 

     

     

     

     

     

     

     

    Elly.


      I tried my consultation at-a-distance with Dr. Peterson of Wellness Alternatives of St. Louis (a Dr. K protocol doctor) but we had technical difficulties and need to reschedule. I have just received some of the client notes and nutritional information and it appears I will need to make some great changes, but until I have the in person consultation I won't know exactly what. I plan to report back once the rescheduled appointment is made.

       

      MTA: I already know I have to be on a strict GF diet for life. Soy was already out. It also looks like dairy is also going to go away. Grains are up for grabs pending our conversation.

       

      MTAx2: My appointment is rescheduled for later today! Smile

       

      Hi Kerry,

       

      I am really hesitant to throw water on this.  But from what you describe here is unacceptable in my eyes.  This Dr. Peterson is a chiropractor, graduated from Logan College of Chiropractic.  He does not accept insurance and the "firm" is recommending so stringent a diet and way of life, you are doomed to failure.  This Dr. Peterson can do it all over the internet (Skype ???) and not even touch you and look at you straight in the eye. Maybe there is a reason for that.

       

      If I were you, I would find a person who has studied Internal Medicine at a major University, takes insurance and will see you physically on an ongoing basis.  You should be able to get the tests  Peterson ordered (they are yours ... you payed for them) and take them to an internist.  Check out the symptoms of Lupus .....

       

      I'm so sorry for your trouble, but looking from my old eyes this reeks of snake oil. 

       

      Elly

      http://www.ellyfosterphotography.com/

        Hi Kerry,

         

        I am really hesitant to throw water on this.  But from what you describe here is unacceptable in my eyes.  This Dr. Peterson is a chiropractor, graduated from Logan College of Chiropractic.  He does not accept insurance and the "firm" is recommending so stringent a diet and way of life, you are doomed to failure.  This Dr. Peterson can do it all over the internet (Skype ???) and not even touch you and look at you straight in the eye. Maybe there is a reason for that.

         

        If I were you, I would find a person who has studied Internal Medicine at a major University, takes insurance and will see you physically on an ongoing basis.  You should be able to get the tests  Peterson ordered (they are yours ... you payed for them) and take them to an internist.  Check out the symptoms of Lupus .....

         

        I'm so sorry for your trouble, but looking from my old eyes this reeks of snake oil. 

         

        Elly

         

        Elly, I understand. However, he is a Dr. K recommended doctor and he worked right off my blood work and had a very in depth discussion with me. I actually have never spoken so much with a doctor. If nothing comes of this, I will chalk it up as an experience and go from there. 

         

         

         

         

         

         

         


        Oh roo roooo!

          Kerry, I wish you luck, and please do keep us posted on all the details. I'm really interested in the GF and dairy free aspect particularly. Hope you see changes for the better soon!

          Beth


             

            I have to follow strict GF for life, going beyond the diet to include soaps, cleansers, deodorant, moisturizers, make up, shampoos/conditioners, etc. I also need to drop the following from my diet: milk, casein, cheese, casomorphin, multiple kinds of sweeteners and natural flavors, etc. I am also to try to avoid chocolate, and most of the grains as much as possible. Soy and iodine are no-nos too. There are many other items, but too numerous to mention.

             

             

            Kerry - the thyroid requires iodine to produce thyroid hormone. In people without thyroid disease, low iodine levels cause hypothyroidism. For a doctor to tell a thyroid patient to avoid iodine just throws all kinds of flags up for me. Not only does the thyroid need iodine to make thyroid hormone, what converts T4 into usable T3 are deiodinases - notice that iodine is part of that name. Please, do some research on your own about this.

             

             The diet recommendation seems really severe, and I agree with Elly that it would be very difficult to follow for any length of time. Is this to be an elimination diet - where you cut everything out and then start adding back one thing at a time to see if if causes symptoms?

             

            I hope things work out for you, Kerry. Please keep us posted on your progress.

            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

              So I am a creeping up dose of Synthroid to deal with the fluctuation of THS levels, from 100 to 112 and now 125.  I have good days and bad days; I never really know how I am going to feel.  It is frustrating, but the good news is I ran a Half over this weekend and got 2:07:30, only 12 seconds slower than last year.  Bummer not to improve, but frankly, there are days when an 11 minute mile is a struggle.

               

              I have about 6 more weeks until another blood test. 

               

              Yowza! That's 2 kinds of good news - so glad for you 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

                Kerry - the thyroid requires iodine to produce thyroid hormone. In people without thyroid disease, low iodine levels cause hypothyroidism. For a doctor to tell a thyroid patient to avoid iodine just throws all kinds of flags up for me. Not only does the thyroid need iodine to make thyroid hormone, what converts T4 into usable T3 are deiodinases - notice that iodine is part of that name. Please, do some research on your own about this.

                 

                 The diet recommendation seems really severe, and I agree with Elly that it would be very difficult to follow for any length of time. Is this to be an elimination diet - where you cut everything out and then start adding back one thing at a time to see if if causes symptoms?

                 

                I hope things work out for you, Kerry. Please keep us posted on your progress.

                 

                Yes, it is elimination diet. I just am not to take extra iodine, which some folks do. What is different for me than standard hypo is that I have to calm the autoimmune down first. All of these steps are to get back to functional and then I can relax a bit. The GF diet is for life and standard for hashimoto's. Everything else is elimination. If I can calm the immune down then my hypo might also calm down a bit too.

                 

                 

                 

                 

                 

                 

                 

                  Yes, it is elimination diet. I just am not to take extra iodine, which some folks do. What is different for me than standard hypo is that I have to calm the autoimmune down first. All of these steps are to get back to functional and then I can relax a bit. The GF diet is for life and standard for hashimoto's. Everything else is elimination. If I can calm the immune down then my hypo might also calm down a bit too.

                   

                  Thanks for clarifying - saying iodine is a no-no is a little bit different than saying not to take iodine supplements. None of the doctors I have seen re:thyroid have ever recommended iodine supplements to me.

                   

                  link to iodine controversy the urine test for iodine levels should be a 24 hour specimen.

                   

                  I went gluten free for 3 months - it was challenging, particularly since I am pre-diabetic. I found  many gluten free products to contain fast carbs - bad for me. It didn't make any difference in the way I felt, but then I don't have anti thyroid antibodies nor am I gluten sensitive. Please continue to share your experience. Different things work for different people and it is so helpful to see what peeps have tried and what works.

                   

                  I wish there was such a thing as standard hypo. Seriously - that should have been me. I have been tested for many  things and still  no explanation as to why I don't respond to T4 the way I should - and why I have seasonal fluctuation in my levels when I am on a set dose year round. I was told that treating someone with no thyroid was much less challenging than treating a hypothyroid patient who still had some thyroid function as you would be dealing with varying levels of hormone depending on the sporadic function of the thyroid....

                  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 went gluten free for 3 months - it was challenging, particularly since I am pre-diabetic. I found  many gluten free products to contain fast carbs - bad for me. It didn't make any difference in the way I felt, but then I don't have anti thyroid antibodies nor am I gluten sensitive. Please continue to share your experience. Different things work for different people and it is so helpful to see what peeps have tried and what works.

                     

                     

                     

                    Because of the antibodies, I have to stay GF for life. I agree - It is hard to try to substitute in other grains for just exactly what you say above. I am trying to limit my grains as much as is reasonable for that exact reason. As far as dairy, I am finding some reasonable substitutes for milk, butter/margarine and yogurt. I enjoy non-flavored coconut milk and a coconut-based yogurt and ice cream. The trick for me is that  so many things have soy and I need to avoid that as much as possible. Cheese is the one thing I haven't found a good substitute for - yet. But I haven't given up. This actually will allow me to clean up my diet some and focus more on whole, healthy and unprocessed or minimally processed foods, especially veggies, which have always been deficient in my diet. 

                     

                     

                     

                     

                     

                     

                     


                    Oh roo roooo!

                      Kerry, thanks for sharing the details!  I agree w/what you are saying regarding GF products--just easier and likely better to totally avoid grain products as much as possible instead of buying the GF "mock bread" and so on.  It's a tough change, especially at first, but it IS doable.  I recently had a little "grain binge" myself and holy cow, could I feel it for the next week or so w/achy joints, bloating and general lack of energy.  I would have never believed this even a year ago.

                       

                      Avoiding dairy is a major problem for me as I consume cheese and whey protein daily, but I guess I should buckle down and give it a shot for at least 30 days.  If I do that and then reintroduce it and get a similar reaction to what grain gives me now, it seems pretty clear that I would need to avoid dairy also.

                       

                      http://chriskresser.com/iodine-for-hypothyroidism-like-gasoline-on-a-fire  Here's a link to some discussion about hypothyroidism, iodine, Hashimoto's, and selenium.  There's more out there if you're interested.

                       

                      Beth

                        Finally, I have good news to report! the endo I saw in Seattle checked my thyroid levels including thyroxine binding globulin and is willing to adjust my meds based on just my FT3 levels! Six very long years later, and while I don't have any explanations, at least I have a shot at a solution. I just don't tolerate cytomel, so the plan is to check my FT3 at 2 month intervals and keep me between 3.0 - 3.5, increasing Synthroid as needed. There is no guarantee that just increasing my FT4 levels will mean more conversion to FT3, but it's a start + this doc is willing to work with me to get and keep me at optimal levels.

                        I think I am still in shock - this truly was going to be my last attempt at this, and I am glad that I didn't give up trying.

                        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

                          Kerry - how is the gluten free diet going? How are you feeling?

                          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


                          The Crap Whisperer

                            Finally, I have good news to report! the endo I saw in Seattle checked my thyroid levels including thyroxine binding globulin and is willing to adjust my meds based on just my FT3 levels! Six very long years later, and while I don't have any explanations, at least I have a shot at a solution. I just don't tolerate cytomel, so the plan is to check my FT3 at 2 month intervals and keep me between 3.0 - 3.5, increasing Synthroid as needed. There is no guarantee that just increasing my FT4 levels will mean more conversion to FT3, but it's a start + this doc is willing to work with me to get and keep me at optimal levels.

                            I think I am still in shock - this truly was going to be my last attempt at this, and I am glad that I didn't give up trying.

                             

                            I'm so happy for you!!!! I hope you find a solution that works for you very soon. You have been through so much and you are so strong...I'm thankful you didn't give up. You deserve to feel good!!!

                            Being the best tiny spec that I can be!

                              Kerry - how is the gluten free diet going? How are you feeling?

                               

                              Was in the Dominican Republic on a vacation for the last couple of weeks and fell off the diet. Now that I am back on, am feeling much better.

                               

                               

                               

                               

                               

                               

                               


                              Oh roo roooo!

                                Just a quick update:  Last spring, as I was finally starting to get a bit more strict about going Paleo/Primal/whatever tag we want to use (basically avoiding wheat totally, other grains pretty much, and keeping carbs overall on the lower end), I had my first ever reduction in Synthroid dose (about 8 years since I was diagnosed, with a steady climb in dosage as time went on).  This was pretty exciting for me.  I just went for labs again and from the looks of things,we will be reducing again, perhaps pretty significantly.  I see the doc tomorrow, so I don't know for sure, but my guess is we will have dropped my dose from 150 mcg to about 100 mcg in the space of 6 months, just with diet adjustments.  This makes me want to do even better, diet-wise, and see what may be possible here. 

                                 

                                I'm also excited to be working with a new doc who has encouraged me to try different fermented foods, to get serious about NO WHEAT, and to add iodine via kelp, dulse, etc.  I have some kombucha working even as we speak, and also a quart of homemade sauerkraut that should be ready any day now, what fun!  Hub thinks I'm crazy, but I think when I tell him that we've made actual measurable headway w/my thyroid problems, he may realize there's a method to my madness.

                                 

                                Hope you're all doing well also--happy holidays coming up!