Surrender

19 Oct

It’s been two whole months since I’ve blogged. During those two months, I have been on a self-imposed hormonal roller coaster.

Remember how I said I couldn’t give up on losing weight and achieving “normal?” Since my thyroidectomy 14 months ago, I have tried the following thyroid replacement medication combinations:

  • 125 mcg Synthroid alone
  •  90 mg Armour Thyroid
  • 112 mcg Synthroid alone
  • 112 mcg Synthroid + 5 mcg Cytomel
  • 125 mcg Synthoird + 5 mcg Cytomel
  • 125 mcg Synthroid + GTA Forte supplements
  •  125 mcg Synthroid + 10 mcg Cytomel
  • 65 mcg Nature-Throid alone
  • 97.5 mg Nature-Throid alone
  • 65 mg Nature-Throid + 25 mcg Synthroid

Do you know when I felt my best? I felt the most “normal” on the very first dose of medication – 125 mcg Synthroid. I have spent the last 14 months in a complete state of panic, distrusting my doctors, self-medicating, and fending off impending weight gain. And as a side effect of all of my medication changes, I created the very thing I feared – weight gain. My latest conquest was switching to Nature-Throid. It took me MONTHS to find a doctor who would prescribe it. I worked so hard to stabilize my vitamin and iron levels first and I did everything by the book. And similar to my experience with Armour Thyroid, my body completely crashed, I started having extreme hypothyroid symptoms and I gained five pounds. Interestingly, my TSH stayed low at 0.43, but my FT4 was only 0.6. (Side note: this completely proves that you can be hypothyroid with a low TSH!) I tried upping my dose of Nature-Throid only to be greeted with extreme sweating and anxiety, and three more pounds. Then I tried combining a smaller dose of Synthroid with a smaller dose of Nature-Throid…all to no avail. Two weeks ago, in a fit of tears, I switched back to my old regimen: 125 mcg Synthroid + 5 mcg Cytomel. I am watching my calories very closely and burning at least 2000 calories a week through exercise, and so far, I have managed to lose five of the extra eight pounds I gained. I am beginning to feel better and most of my other symptoms are fading away. I also started taking Raspberry Keytones supplements, and I have no idea whether or not they are helping, or whether it’s the thyroid medication.

What I do know is that I have officially surrendered control. I am not a doctor and maybe I really don’t know what’s best when it comes to my thyroid replacement medication. As per usual, I took “being informed” into the extreme of being counter-productive. What if I had never messed with my medication at all? I may have been able to maintain my weight after surgery. The extra Cytomel would have resolved my lack of energy, and I could have been “normal” by now. Instead I endured 14 months of fighting, second-guessing, feeling good, feeling bad, losing sleep and gaining weight. So if this experience was supposed to teach me something, I suppose it did. My UofM Endocrinologist really is a good doctor. The first time I saw her, she told me the first year would be hard, that I might gain weight, but after a year, things would level out. At the time, I refused to accept that in my brain. My body, however, did exactly as she said it would. Before I switched to Nature-Throid, I was genuinely feeling good. Perhaps I was just about to turn a corner before I stepped in with my control issues and screwed it all up.

Can we pretend the last two months never happened? I promise I will behave this time.

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8 Responses to “Surrender”

  1. autumn October 19, 2012 at 10:47 am #

    Thank you for posting! I had a total thyroidectomy last month due to hurthle cell nodules. I searched the internet for anything information I could find related to total thyroidectomy which led me to your blog. I really wanted to find someone that had a positive experience (or even just an ok one) since all I could find were horror stories. I have been thyroidless for a month and 4 days and must admit things are going well. So much so that I am holding my breath waiting for something bad to happen! The surgery was painless, no complications post op, clear pathology report and about 4 to 5 days after surgery I was back to working out with just a few minor modifications to my routine. Even my incision is healing so well that people who don’t know I had the surgery do not even notice it. My family dr is treating me since the endo I really wanted did not have any openings til after the first of the year. My dr said she doesn’t just look at numbers but at symptoms and has no problem prescribing natural hormones but prefers to start with synthetic since they are more consistent. She has started me on 25 mcg of Synthroid and I go back for bloodwork the first week of Nov. I’ve hated to admit how much the thought of weight gain bothers me since it seems so vain, but I have never had a weight problem, work out 5-6x week and count calories. I’m 33 and I’ve always had a bad relationship with food and body issues – not to mention a lack of patience! I really want to go ahead and add in Cytomel but I know I need to wait for my next round of bloodwork and that my body needs time to work with the meds. I hate that you have had to go through all of this but please know this is a huge lesson for me and probably a Godsend for my dr! I may even print it out to keep in my “symptom journal!”
    Sorry this turned into such a long comment too!

    • sarahyoung1119 October 19, 2012 at 10:57 am #

      Autumn – Thank you for reading! I am happy to hear you are doing well! The best advice I can give you is be patient, keep exercising and stay connected with other survivors. It’s been so helpful to know we are not alone, and that there is hope!

    • Tina Robson October 19, 2012 at 6:46 pm #

      I’ve had a total thyroidectomy too.

  2. Anna October 19, 2012 at 11:29 am #

    This is such a hard journey!! I think the hardest part is the true loss of control. We have to rely on these medications to make us feel better and it takes so long for that to happen that we start to question the medications we are taking. I have never had depression or weight issues and I feel like I am on such a huge emotional roller coaster and sometimes it feels lonely. It has been just over 6 months since I had RAI and only in the last few weeks have I started to feel close to my “old” self. I am so happy that I can say that but with another increase in meds (because my endo wants me more suppressed) I am starting to feel a little achy and tired and that makes me so mad. I hope it’s temporary. I’ve always been on Synthroid and at least I can see now that it will work and I can feel good. I get why you have tried so many things though and it’s ok!!! Who wants to wait a year to feel normal??!! In the big scheme of things, a year is no time at all but when you are going through it….it seems like FOREVER. Hang in there friend. It is going to get better and we are going to win this little war:). xo

  3. Tina Robson October 19, 2012 at 6:59 pm #

    You really have had a rough 14 months. Hope things can start settling down for you now. Sounds best to go back to the beginning and give that more time.

    Post surgery I was on 200mcg Levothyroxine, then they reduced me to 175mcg and now I’m on 150mcg, I live in the UK and think Levothyroxine is the same as your Synthroid (but not 100% sure). I seem to be fine and haven’t experienced any weight gain.

    It’s such an up and down time post surgery, your tired, needing to heal, your so anxious and coming to terms with the diagnosis, my calcium control was all over the place. I think it does all take time to settle down.

    Take care x

  4. Lisa October 26, 2012 at 2:54 pm #

    It sound to me that your doctor pulled the oldest trick in the book. You were never on a high enough dose of natural thyroid hormone, to feel a real difference. I am thyroidless for 2 years. I also have Hashimotos. I gained 40 pounds before surgery and another 25 after. I was on 200mcg synthroid and was going down hill fast. Like most of us, I had to turn to the internet for answers. After many, many months of research, I was able to get naturethroid. A few months after starting naturthroid, i noticed a big difference. My painful, swollen cankels were going down. My word mix-up (although very funny at times,) was subsiding, my migraines were slowing, and I have lost 40 pounds. I switched doctors, (as I have been referred away from every doctor I have seen,) and this time, she wanted to lower my dose, based on my TSH. I gave it a try, (just to humor her and myself,) for 5 days. I crashed big time. I am still extremely fatigued though. So, I decided to go the other way and go up. I’m slowly working my way up, dose wise. I’m still losing weight, but the exhaustion is still debilitating. I wish you luck in your journey. I was wondering if you take supplements; and if so, what do you take?

    • sarahyoung1119 October 26, 2012 at 3:29 pm #

      I wish I would have had the same experience on NatureThroid! I couldn’t tolerate the higher dose…2 grains made me feel so anxious, sweaty and sick. I know that it is probably my adrenals that caused that, but I don’t know how to stabilize them, and I am too afraid of more weight gain to try again. At least the Synthroid/Cytomel combo stops weight GAIN (can’t lose). I still try like hell though…if I worked out like I do now back before I had thyroid problems, I would have been a fitness model!

      As for supplements, I take:
      Ferrex 150/ twice a day
      Vitamin D drops/ 1200 IU a day
      Vitamin C/ 500 mg a day
      Target brand prenatal vitamin
      Raspberry Keytones – 500 mg/ twice a day

      What do you take?

  5. Debra October 28, 2012 at 6:40 pm #

    I have just recently starting taking cytomel with my synthroid and i am waiting to see the difference. first blood work was done friday.

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