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  • minli1976
      Post count: 3

      Hi all, my name is Mindy I am 35 and want off this Graves’ roller coaster :)

      I suppose I can start with a history of my Graves’ via blood results () indicate lab normal ranges, bolded numbers are mine.

      ** I should note that my TSH has never been any higher than >0.006 so I did not include it **

      November 29th 2011
      FT4 – 6.22 (0.82-1.77)
      TSI AB – 587 (0-139)
      TPO AB – 319 (0-39)
      FT3 – 491 (71-180)

      {these results landed me in the hospital with the diagnosis of Graves’ and thyroid storm. 30mg Methimazole and IV Methylprednisolone for two days.}

      December 19th 2011
      FT4 – 3.27 (0.82-1.77)
      TSI AB – 396 (0-139)
      TPO AB – 325 (0-39)
      FT3 – 346 (71-180)

      {we lowered the Methimazole to 20mg and hoped for the best since there was such a dramatic drop}

      January 13th 2012
      FT4 – 3.49 (0.82-1.77)
      FT3 – 307 (71-180)

      {at this point we stopped testing the antibodies, they’re high, we know they’re high. I started to feel that hyper horrible feeling again, so I asked the Endo if we could go up on my meds, she refused which lead us to…}

      January 25th 2012
      FT4 – 4.25 (0.82-1.77)
      FT3 – 418 (71-180)

      {second time hospitalized with BP of 148/82 and pulse of 165. IV steroids again, another fun EKG, more and more blood, NEW ENDO, Methimazole bumped up to 40mg, home two days later with a ten day cycle of Methylprednisolone for added good measure}

      February 18th 2012
      FT4 – 2.42 (0.82-1.77)
      FT3 – 258 (71-180)

      {new Endo wanted to get aggressive, see if we could get me into the ever elusive sweet spot for FT4, so kept 40mg of Methimazole, added I forget the dosage of PTU, and added Prednisone for one month to give things a good push}

      March 26th 2012
      FT4 – 2.10 (0.82-1.77)
      FT3 – 143 (71-180)

      {dropped the steroids, stayed on 40mg of Methimazole, kept PTU for one final push}

      April 27th 2012
      FT4 – 1.59 (0.82-1.77)
      FT3 – 258 (71-180)

      {Finally in the sweet spot so here came the dreaded med drop down :( We were not too optimistic, my thyroid appears to be very stubborn. No PTU, Methimazole dropped to 20mg to be raised to 30mg if I felt like crapolah, which I did within two weeks…}

      July 3rd 2012
      FT4 – 2.64 (0.82-1.77)
      FT3 – 362 (71-180)

      If you got through all that I commend you :) My appointment is tomorrow, where we will more than likely discuss adding more steroids and my old friend PTU once again. The goal is to get both FT4 and FT3 in normal range long enough for the RAI U/S so I have less chances of heart complications/eye issues when I undergo RAI therapy as meds alone just do not work for me.

      So more roller coaster for a little while longer, but man do I wish I could get off of this crazy ride!

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello and welcome to our forum! Wow, you certainly *have* been on a rollercoaster ride…I’m so sorry you have had to deal with all of this for the last few months.

        We’re fellow patients here – not docs – so we can’t give medical advice or interpret specific labs. Here are a couple of items, though, that might be good for discussion at your appointment tomorrow…

        1. This is the first I’ve ever heard of someone taking both Methimazole and PTU. Is there a specific rationale for this? Methimazole is generally the preferred drug, although the latest medical guidance notes that PTU is generally used for a patient experiencing thyroid storm, as it has the added benefit of inhibiting the conversion of T4 to T3, which is the more powerful and active form of thyroid hormone.

        2. Have you talked with your doc about the possibility of surgery as a treatment option? Although surgery is riskier on a patient who is hyperthyroid, there are precautions that can be taken (administration of beta blockers and potassium iodide) to reduce this risk. It sounds like your doc is aware of the fact that high T3 levels are one of the major risk factors for worsening of the eye disease after RAI (along with high antibody levels and smoking). Of course, surgery comes with its own risks, so this is certainly not a decision to be made lightly.

        Take care – and please keep us posted on how you are doing!

        adenure
          Post count: 491

          Wow Mindy! That is quite the ride! Definitely time to get off the roller coaster! I would get my numbers as stable as possible and then get rid of that thyroid! I know that’s your goal with RAI. Like Kimberly mentioned, is surgery a possibility for you? My numbers were not as hyper as yours and I only was on methimazole (a small dose) for 7 weeks, but it got my levels normal and I had surgery 3 weeks & 4 days ago. I took SSKI -potassium iodine drops- for 7 days before surgery to shrink the thyroid and pull blood away from it. My endo said that, used for up to 10 days, SSKI drops also help to establish normal thyroid levels as well. Of course the glitch there is if you take it past 10- 14 days, it can “fan the fire” and cause hyperthyroidism to worsen, so if you start it for surgery, you kind of need to see it through.

          If surgery is a safe possibility for you, I would recommend it if you have access to a really good surgeon who does a lot of thyroidectomies. Everyone is different, and maybe RAI is what you are most comfortable with, but I feel remarkably better since having the surgery- better than I did even when my numbers were normal on methimazole. I started Synthroid 2 days after surgery and never experienced being hypo. I get my labs done in a week to check the dose, but I think we’re pretty close. I’ve read about a “thyroid dump” for a few days after RAI which can give pretty intense hyper symptoms from what I understand. I don’t know, but if your endo is willing to consider surgery and you have access to an experienced surgeon, I would think about it and weigh it against RAI.

          Alexis

          Carito71
            Post count: 333

            Hello and welcome. You can call me Caro.

            I’m new here too. Arrived about a month ago after having gone to the ER with tachycardia.

            You have been and are going through a lot. I hope very soon the #s are were they need to be for you to have your thyroid RAI, or removed if you decide to go that route.

            Does your Dr. order liver ALT and AST tests as well? Didn’t see them mentioned so I thought I would ask.

            I’m on Methimazole also (Yesterday was the beginning of my 4th week on it). 30mg a day. I posted my new lab #s today for it seems like my FT4 is starting to decrease.

            Kimberly and Alexis have given you good information. I think that if given the option between RAI or surgery that I would probably go with surgery.

            Thank you for sharing your labs with us. I went through all of them. What can I say …. I like looking at labs :)

            Wish you the best!
            Caro :)

            Carito71
              Post count: 333

              Alexis, hello ….

              So glad to read you are doing better. :)

              Caro

              minli1976
                Post count: 3

                Thank you all for the replies.

                Carito71
                I do get my ALT/AST tests done, so far they have all been in normal ranges.

                Alexis & Kimberly
                Unfortunately surgery is going to be a very last ditch effort. Before I got too ill to work, I was a professional singer. My doc wants to try everything we can to avoid surgery due to the risks of vocal chord damage. (I know they are small, but it is a big risk for me).

                RAI therapy scares me a bit because of the hormone dump, but I am really hoping they can get me to a safer level where that won’t be such an issue.

                I am just so frustrated with it all.

                Carito71
                  Post count: 333

                  Glad to hear all is good with your liver. :)

                  catstuart7
                    Post count: 225

                    Hi Mini, you have been through it! How are you feeling day-to-day lately? Looking at your labs one big question jumps out at me that maybe you’ve already asked your doc. Why are they lowering your dosage once once the FT4 just gets in range but your FT3 is still above range? It looks like your FT3 has never been in range (except once) but also never gets the chance to be. Perhaps your endos really worry about you going hypo, but right now my FT4 is in the lower half of the normal range and I’m doing “okay” relatively with my FT3 just under the top. It is posible meds just don’t work for you, also possible your endos haven’t used a dosing scheme that works yet. And of course I’m not a doctor or play one on tv, but I believe in questioning everything!

                    minli1976
                      Post count: 3

                      Catstuart7
                      I have questioned that before and was told that if we got my FT4 to the right level T3 would settle itself out since T3 is converted from T4…..at least that is what my old Endo said. It never quite sat right with me, so I plan on asking my new Endo tomorrow.

                      As far as day to day goes, it has been very rough. I have RA to complicate things and since they’re both auto-immune if one is out of whack the other is sure to follow. Been dealing with an RA flare for the past three weeks now. I am currently being tested for polymyalgic rheumatica as well since my muscles have a mind of their own these days, completely inflamed and knotted up, and it is also auto-immune.

                      I cannot get comfortable at all these days, it’s either an inferno or I’m freezing, most of the time it’s the inferno though. I feel like, and I am sure my husband will agree, I am a total basket case 99.9% of the time. Comes with the territory I suppose :)

                      I’m just getting by the best I can. Some days are better than others you know?

                      catstuart7
                        Post count: 225

                        Good luck at the endo tomorrow Mini, I’ll be curious to know what he says. I’m sorry you’ve got to deal with other autoimmune issues on top of GD. Maybe that’s complicated your reaction to the ATD’s because the antibodies are so riled up? And I hear ya about some days better than others, when I say I’m “okay” I’m using a pretty low bar….okay means not feeling completely awful. It’s rare I feel actually healthy and normal – I got maybe two of those days about a month ago and I’m not sure what made the magic happen but it slipped by. Here’s to feeling better one of these days!

                        Harpy
                          Post count: 184

                          First thing,
                          You’re not a head case, nut case or basket case, you are just another individual trying to cope with one of the many variations of GD manifestation.
                          Your test results are very similar to the way my partners were in the early stages and the endo also sent her up & down adjusting meds trying to get her levels right. If FT3 was right then FT4 would be too low & if FT4 was right then FT3 would be too high and it took a full 2 years for both to sit in a reasonable place in their respective ranges. I have also seen the same situation with other individuals, looking back at my partners situation the best option may have been to get the FT4 into the lower part of the range and allow the FT3 to sit where it was provided she did not have Hyper systems, or using Add Back Therapy, which I was unaware of at the time, this is where meds are raised to the point where FT3 sits at the right level and a small amount of Thyroid hormone is also taken to maintain an appropriate FT4 level. Either way for our situation my partner came through that stage without too many negative symptoms affecting her.
                          When I eventually charted my partners test results a definate trend emerged with the relationship between FT4 & FT3 levels gradually increasing until both FT4 & FT3 were sitting at the middle of their respective ranges (3 year mark), this was most evident when I plotted the FT4:FT3 ratio, then over the next 2 years her body was managing levels better and over that time her medication was gradually reduced, in January this year her TSH reappeared which had been nonexistant for the last 5 years and she’s looking on track to go for remission next year.

                          I am still searching around to try to find out why this situation of high FT3 in relation to FT4 occurs, as far as I can see there are two possible options:
                          1/ The thyroid is releasing excessive quantities of FT3 because of the antibody stimulation of the TSH receptors or
                          2/ The antibodies are stimulating the TSH receptors in the Liver and elsewhere in the body causing an excessive increase in the conversion rate of FT4 to FT3

                          Regarding the RA, have you thought about looking at dietary measures, there appears to be some link between Wheat Gluten (Gliadin) sensitivity in a number of autoimmune diseases including RA, the association does not occur for all individuals but the corrolation is much greater than random population expression of anti Gliadin andibodies. One study link below:
                          http://www.ncbi.nlm.nih.gov/pubmed/8575138
                          I found a while back there was a link in some cases between Psoriasis (my disease) and Gluten so I gave it a try, been Gluten free for 2 months and my condition seems to be improving and also found other aspects of my physical health improving as well, may be worth a try if you are not already gluten free.

                          Hope you get some relief from your symptoms soon, when my partner was full on Hyper she was like a “cut cat on fire” snarling, then appologising and all the time radiating heat like a furnace.

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