Anyone here have Hashimoto?

Nicole9187
Nicole9187 Posts: 122 Member
Hello, I was diagnosed this week with Hashimoto, and we are waiting for my results to come back for my thyroid ultrasound that I had done two days ago. I just started some new meds, and I think I'm just a little surprised by the diagnosis. So I thought I would reach out to the board and see if anyone else has the same thing, see what's worked and maybe what hasn't?

Thanks!

Replies

  • nvmomketo
    nvmomketo Posts: 12,019 Member
    I have it. It went undiagnosed for a decade or two so by time I finally figured it out, I was up to an almost full replacement dose of meds.

    I started with synthroid at about 50mg ( or is it mcg?). I did the dutiful retesting every 6-8 weeks and they increased my dose by 25 each time. After 9 months they finally had me up to about 175 and my TSH was down to a 2.8, give or take 0.2. At that point my doctor declared me fine, refused to increase my meds or let me try a T3 medication, and informed me that my hypothyroid symptoms were (suddenly) due to some other unknown (and unpursued) issue.... I hate that man.

    Anyways, I eventually found a doctor that would let me try T3, in the form of natural desiccated thyroid. THAT finally worked. I had to lower my dosage to 150, but I finally feel well. The scaly skin disappeared in a couple of weeks, my energy improved, I lost a few pounds, and felt better over all. The only downside was that I went through a month or so of increased hair loss again. I don't know if it was my body adjusting to the new meds or caused by one of my other autoimmune issues, but it passed. Hair lss still seems to increase every year or two still.

    Oh! I also went hyper or a week when I first started NDT. Once I cut back, I felt fine within a day or two.

    My advice would be to treat to your symptoms. Increase meds until you feel better and not until your doctor says you should be feeling better.

    Don't just go by TSH. The normal range is often too wide for those with hashi's. for those on synthroid, you probably want a TSH very close to a 1. A 1.2 or 0.8 is good. If you take a T3/T4 combo r NDT, your TSH will be suppressed and should be ignored. My TSH is suppressed and is usually a 0.01. Interestingly, when I went hyper it was a 0.22 and within the normal range, but I hadn't given my body enough time at the too high a level if NDT for it to give an accurate blood test.

    Use the free T3 and free T4 tests. Do not use T3,T4,total T3 or total T4 as it won't give you a good idea of what hormones are actually available for use. For the free T's, your result should probably be in the 50-75% range of your lab's normal reference range - just over the middle of normal. I keep mine around 65-70%. When I was hyper, my free T3 was at the very upper end of normal.

    Be patient. Getting meds right can take months. That being said, don't let them move too slow. If your TSH was 10, 15, 20 or higher, you will need a lt of meds. Starting at 50mg is very low for that situation and if they increase it by small amounts, like 25, you won't be better for many months. Start at 100 or increase by 50s in that situation.

    If your TSH was only a 5 or so, 50 mg or (mcg?) is probably a good place to start.

    And consider adding T3 or switching to NDT if synthroid isn't doing it for you. It works for many but nt everyone. Good luck!
  • lithezebra
    lithezebra Posts: 3,670 Member
    I have it. Taking my levothyroxine works for me.
  • DittoDan
    DittoDan Posts: 1,850 Member
    Do a search on google for:

    "gut microbiota" hashimoto

    I hope this helps,
    Dan the Man from Michigan
    Keto / The Recipe Water Fasting / E.A.S.Y. Exercise Program
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  • neohdiver
    neohdiver Posts: 738 Member
    edited March 2016
    I have it, as well. I've been on 50 mcg of T4. My doctor wants to micromanage it (Yay) - so I've had two tests since diagnosis in October, and we just added 5 mcg of T3 because my thyroid was converting too much of the T4 into rT3 (be sure to have that tested if you're on T4). Definitely don't let them get away with testing only TSH. You need to test T4, T3, and rT3.

    Also make sure they tested for Vitamin D deficiency. One of the triggers for Hashimoto's manifesting itself is a vitamin D deficiency. (Autoimmune disease = genetic tendency + trigger(s))
  • gerrielips
    gerrielips Posts: 180 Member
    Didn't know about the relationship between vita d deficiency & hashimoto. Had the hashimotos 1st (symptom was the feeling that I was walking thru jello) am on thyroid meds...many, many years later developed the vita-d deficit, now under control.
  • neohdiver
    neohdiver Posts: 738 Member
    gerrielips wrote: »
    Didn't know about the relationship between vita d deficiency & hashimoto. Had the hashimotos 1st (symptom was the feeling that I was walking thru jello) am on thyroid meds...many, many years later developed the vita-d deficit, now under control.

    Here's a link to one study (there are tons).
  • lithezebra
    lithezebra Posts: 3,670 Member
    It's thoroughly anecdotal and doesn't prove a thing, however my thyroid taking a dive coincided perfectly with going LFHC in my twenties.