Medication question

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bametels
bametels Posts: 950 Member
I was recently diagnosed with hypothyroidism which is the result of my having had thyroiditis many years ago. Six weeks ago my doctor started me on 50 mg of levothyroxine to start. I go back tomorrow for bloodwork. After a week on this medication, I felt GREAT. Better than I have in such a long time. However, for the last couple of weeks, my symptoms are returning. I feel like a need a nap by mid-afternoon, brain fog (but a much milder version) is returning, my nails that were growing so beautifully are chipping and breaking again, etc. Because my thyroid is giving out, I may be producing less thyroid hormones than I was six weeks ago. However, I'm wondering whether there might be another cause. Do you get an initial 'jolt' and resulting reduction of your symptoms when you start and then does your body get used the medication and therefore you need more? I hope this question makes sense. I'll be discussing this with my doctor tomorrow but I wondered if others have experienced a significant initial improvement only to have symptoms begin to return in a short period of time.

Replies

  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    What you describe is something many of us are familiar with. Its as if your body think, "great!" I have more of what I need and then gets used to it. You are on a starting dose so it would be expected that your dose will be increased. It may take for this test and see stage to be repeated several times before you settle on a dose. This if t4 supplement is "what is right for you". I understand where ever one lives it can be difficult to be given anything other than t4. Theoretically the other options of t3 alone or with t4 and even natural desiccated thyroid, (it is from pig or cattle and comes with the full compliment of thyroid expressions, 1 and 2 are little understood, 2 seem to be formed in the ovaries the use is far from understood). In the best places these would be available, which ever suits the person.

    There are many books and web sites which will contribute to your personal understanding. I have frequently referred to "Stop the Thyroid Madness", which brings together so much helpful information, understanding the numbers they throw at us, why they don't always reflect how we feel. Ups and downs of treatment and reasons why. This site and Mary Shoman. (?) it would come up in a search, have listed doctors who have proven interests in thyroid problems for those in the US by state I think. Having a doctor who understands all things thyroid is the best support you can have, next is someone who listens to you and reads the information you will put before them and then treat to the patient, these people can be few and far between.

    If you can, sit down with your computer, paper and pencil, make notes and try to understand most of what you read to set you up for you next appointment. I wish you all the best, hope all goes well. Hope I've not set hurdles which you do not face. It could pay to be well informed.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
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    I was such a mess when my Hashimoto's was finally diagnosed that I honestly can't remember how the first six weeks felt. Definitely talk to your doctor.

    Everybody's different, but here's what happened to me: I saw my endocrinologist every three months for two years until my thyroid levels entered the "normal" range. He looks at my bloodwork, feels my throat, and adjusts my meds. Now I see him every 6 months.
  • BeckFair
    BeckFair Posts: 35 Member
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    Yes my doctor didn't settle on my dose for 18 months. I think your body is used to being without and so when you gat a little you felt better but have now leveled out. I'm betting they will increase your dose after bloodwork.
  • CSARdiver
    CSARdiver Posts: 6,252 Member
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    There is a very long lead time involved with any hormone adjustment. What your doctor is trying to do (hopefully) is identify a range that works for you. Hormones don't stay at a steady state, but track up and down in a wave pattern, reacting to you body's signals on whether more or less is needed.

    Keep your own records of this and any thyroid panel data and check for any trends related to your symptoms outside of your T4 dose.

    It takes ~5-7 days for hormones to show in serum which is when you should start feeling the effects. Once your body adjusts, then you need another full thyroid panel and med adjustment if necessary until you feel well again. I took me about 18 months as well to arrive at my dose (175/200 alt day).
  • bametels
    bametels Posts: 950 Member
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    Thanks to all for your responses. I'm going to have to learn to be patient. A few weeks of feeling exceptionally well left me so hopeful that I was going to 'get my life back.' Therefore, when I started to feel like some of the symptoms were returning, it concerned me.

    My TSH came back at 2.63 which is significantly lower than the 6.55 it was 6 weeks ago. I was disappointed, however, that my doctor would not run my Free T4 and T3 again. And, while she said last time that she would probably want to push my levels below 2.0, she does not want to increase my medication level now. She said my TSH is "right where it should be." She wants me to come back in 8 weeks for another TSH test. She is concerned about me becoming hyperthyroid. Given my experience with hyperthyroidism (the first phase of my thyroiditis), I certainly don't want to go there. It was 15 years ago but the multiple ER trips and feeling like I was going to have a heart attack or stroke are still etched in my memory.

    Fuzzipeg, I agree with your recommendation that I need to read more. I have visited the "Stop the Thyroid Madness" site and need to go back there again. Unfortunately, I did not find a local doc among their list of physicians. I live the Research Triangle area of NC in the US. With Duke University and UNC-Chapel Hill medicals schools nearby, I thought for sure that I would find multiple thyroid specialists locally, but it looks like diabetes is the focus of their doctors and research institutes/clinics.

    CSARdiver, I agree that I need to keep records. While I have some of the records from when I had thyroiditis, I don't have them all. I was so sick at that time. I was barely functioning, plus I have moved since then. Fortunately, my doctor's practice has online medical records and it tracks all my test results. I can, at any time, see a graph of my levels. I absolutely need to keep track of my symptoms. This is where I went wrong recently. I didn't think all the problems that I was having were thyroid related, in large part, because my doctor kept saying my levels were 'normal'. I now know that the range they use, which goes up to a TSH of 5.5, is outdated. In addition, I was unfamiliar with the other thyroid tests.

    C'est la vie - live and learn.

    Thanks again for your responses and support. I REALLY appreciate it.

    Barbara
  • CSARdiver
    CSARdiver Posts: 6,252 Member
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    The accepted range since 2002 for TSH is 0.3-3.0.

    Excellent that you can view this online - many docs are still reluctant to share this information. If you are still feeling symptoms, then keep pushing this. Continue your overall wellness plan as this will have the greatest impact on your ability to regulate hormones.

    I have some colleagues from my last firm in the RTC area - I'll reach our and PM you if I find out anything.
  • bametels
    bametels Posts: 950 Member
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    Thanks, CSAR. I've told my doc about the accepted range but she does not seem to be 'hearing' me. As I move forward, if I'm not being heard, I'll need to move on to another GP.

    Thanks for your willingness to check with former colleagues about thyroid knowledgeable docs in this area. I live in Cary, about 16 miles west of downtown Raleigh, 16 miles south of Duke, and approximately 23 miles east of UNC-Chapel Hill.