Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Can't stop Liothyronine (T3)

Discussion in 'General Treatment' started by pattismith, Sep 11, 2018.

  1. pattismith

    pattismith Senior Member

    Messages:
    1,610
    Likes:
    2,443
    Yesterday, I decided not to take my small daily dose of T3.
    I was just wondering if I was still needing it...

    The answer is yes, definitely!

    In the middle of the day, I started to struggle, the pain invaded my muscles, and my brain turned into marmalade...

    In the evening, muscles where heavy and burning, moving and doing anything was a struggle...

    I took some metoclopramide (I use it once or twice a week to try to boost a little my TSH), and this morning I took back my 6.25mcg T3 and some coffee...Life was back again!

    Even if can see that my disease is still around and stronger than ever, it's nice to know that I do have meds that helps so much!
     
    Last edited: Sep 12, 2018
  2. Mel9

    Mel9 Senior Member

    Messages:
    743
    Likes:
    1,866
    NSW Australia
    Good experiment!
    Just goes to show how important our meds are.
     
    pattismith and Mary like this.
  3. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    779
    Likes:
    1,072
    Germany
    What is metocloprazine? I can't find much about it.
     
  4. RobR

    RobR

    Messages:
    46
    Likes:
    74
    If my partner didn't take her T3 all hell would break loose, and sometimes she asks me if she has take her daily dose :confused:

    If she misses her T3 dose or is late taking it she can end up in bed with a migraine like illness, aches and pains, vomiting and a confusion.
     
    Last edited: Sep 11, 2018
    pattismith and Mary like this.
  5. drob31

    drob31 Senior Member

    Messages:
    1,394
    Likes:
    868
    You can't stop t3 if you're on t3 only and your TSH is low because your thyroid is essentially shutdown and it takes time for TSH to come back up.
     
    Rlman, Iritu1021, Judee and 2 others like this.
  6. drob31

    drob31 Senior Member

    Messages:
    1,394
    Likes:
    868
    metocloprazine is a dopamine antagonist. It boosts TSH, but I feel like my dopamine is already low so this seems like it would be a bad for me.
     
    Judee, Learner1 and outdamnspot like this.
  7. pattismith

    pattismith Senior Member

    Messages:
    1,610
    Likes:
    2,443
    no my TSH is not low, it is in the normal range, but insuffisient to increase my T3.
    Secondly, 6.25 mcg is not supposed to supress your HPT axis because your own body should produce every day by itself about 30 mcg of T3 physiologically:

    https://forums.phoenixrising.me/index.php?threads/thyroid-hormones-natural-production.61383/

    Sorry, I wrote it wrong, it's Metoclopramide, and yes it is a dopamine antagonist (antiemetic)
     
    Wonkmonk likes this.
  8. pattismith

    pattismith Senior Member

    Messages:
    1,610
    Likes:
    2,443
    it looks like your partner and I are in the same boat!

    How is your own fT3 level?

    I checked my husband fT3 not long ago, and I discovered that he is almost as low as I do, with a TSH level close to mine.
    We are together for 20 years, so I may have infected him with something that messed up his HPT axis as well.

    Now he has an Acute Myeloid Leukemia, and it could be that the low immunity produced by the low T3 state was a possible favoring factor...
     
    RobR likes this.
  9. debored13

    debored13 Senior Member

    Messages:
    1,215
    Likes:
    993
    Vermont, school in Western MA
    This happened to me recently but with progesterone. Progesterone causes some weird side effects but I think the reason I've taken it for essentially a month or two straight despite the annoying side effects is how effective it is with pain relief. took a couple licks of it tonight and pain disappeared for a couple hours. I know my doctor would think i'm insane, so I'm trying to stay off it for a little while, but god...
     
  10. RobR

    RobR

    Messages:
    46
    Likes:
    74
    Seems that way. I do recall a former girlfriend having the same problems and she had to take T3.

    I have no idea about my fT3 level. Doc said my Thyroid levels are normal, whatever that means.

    That is concerning because my partner of 16 years had a post viral infection (Green gunge from the nose etc) a few years before we met. Could that have brought on the Thyroid disorder?
    I have been suffering a similar issue. I've had Chronic Sinusitis and post viral ME/CFS for nearly a decade now.
    And I do wonder if I was infected by my partner. Before this illness I was fighting fit.

    I'm genuinely sorry to hear your husband has AML. Jeez, this has me concerned now.
     
    pattismith likes this.
  11. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,195
    Likes:
    5,491
    Pacific Northwest
    Many of us have thyroid issues. Sometimes lab values look normal, but our bodies aren't properly distributing them across all tissues. But many of us have abnormalities easily found on a lab test, and treating these reduces fatigue and improves function.

    Has your doctor done these tests, which comprise a "full thyroid panel"?
    • FT3
    • FT4
    • RT3
    • TPO antibodies
    • Thyrpglobulin antibodies
     
    RobR likes this.
  12. RobR

    RobR

    Messages:
    46
    Likes:
    74
    Thanks Learner1. (Bookmarked)

    No would be my best guess.
    I would have to pay for those tests in the UK because we are only given what's on the menu under the NHS.
    Even a recent blood test came back all clear and my GP sounded happy that I was in 'good health'. I thought 'you gotta be kidding me right', I'm sick as a parrot and you're telling me all is well, madness.....
     
    Mel9 and Wishful like this.
  13. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,195
    Likes:
    5,491
    Pacific Northwest
    Ah, your NHS doesn't test FT3 because they got an outrageously bad deal for buying T3 from the manufacturer. So, rather than ginding a cheaper supplier, they just stopped testing for the need. Other UK folks do inexpensive private testing and buy T3 from Europe if they need it.
     
    RobR likes this.
  14. RobR

    RobR

    Messages:
    46
    Likes:
    74
    I wasn't aware of that. This is something I will looking into for sure.

    Thanks again!
     
    Learner1 likes this.
  15. pattismith

    pattismith Senior Member

    Messages:
    1,610
    Likes:
    2,443
    Dear Rob,

    I have no idea what kind of infection it could be, but another member here on PR have the same issue (low fT3), and so does her wife....

    And when fT3 is low, your immunity is bad, your white cell level is low, your red cell level as well, you can get more infections, and cancer cells will show up easily.

    A scientific study published this year showed a subset of ME/CFS patients with low fT3....

    So we are a group of people here with this problem, and the fact that all your thyroid panel is fine doesn't rule out a low fT3, because what should be investigated to make a good evaluation of your fT3 level is fT3/fT4 and fT3/rT3 and fT3/TSH.

    It is still not known is the low fT3 is the problem by itself, or if it just a revelator of something else going wrong.

    I mean, many channelopathies or mitochondrial diseases are worsened by hypothyroidism, so the low T3 may not be pathogenic by itself, but because of its association to another bug....

    In that case, fT3 would just worsen another disease.
    For now, there was not any investigation to see clinical outcome in CFS/ME with low fT3, are they worse or better? this is something I would like to know...
     
    RobR likes this.
  16. Wishful

    Wishful Senior Member

    Messages:
    945
    Likes:
    1,330
    My GP seems to accept that I have ME, and he seemed amused (not in a bad way) that according to the standard tests, I'm one of his healthiest patients. It's the doctors who didn't accept that I had a real disorder that were the problem.
     
    RobR and Mel9 like this.
  17. Wishful

    Wishful Senior Member

    Messages:
    945
    Likes:
    1,330
    A very useful test. I do that with my treatments too, since other treatments in the past had stopped working at some point. I also test foods that I consider 'safe' once in a while, just in case they've started causing problems. We do need to retest our assumptions once in a while.
     
    pattismith likes this.
  18. RobR

    RobR

    Messages:
    46
    Likes:
    74
    Thanks pattismith,

    I never knew any of this because there is so much information regarding ME/CFS my head spins when I see the amount of post regarding different studies. This is something I will discuss with my partner because she has also read what you've written and is interested.

    Thanks again!
     
    pattismith likes this.
  19. RobR

    RobR

    Messages:
    46
    Likes:
    74
    For a GP to accept you have ME is a step forward at least. No such joy here, still the same old bunch who seem to think all patients must be thick and not know what they are talking about. I'd change surgery but feel as though the attitude will be the same. Now they have me listed as fit as a fiddle I may as well stay away, for my own sanity.
     
  20. Wishful

    Wishful Senior Member

    Messages:
    945
    Likes:
    1,330
    I'm satisfied that I have ruled out other medical disorders. There isn't anything doctors can do for ME patients at present, so going to a doctor is just risking stress and disappointment, and wasting resources. I'll go to my GP if I come across a new test or drug that I think is worthwhile, but otherwise, this forum is more useful.
     

See more popular forum discussions.

Share This Page