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Thyroid hormons T4/T3, someone else taking it for CFS/ME?

Discussion in 'General Treatment' started by pattismith, Jan 17, 2018.

  1. pattismith

    pattismith Senior Member

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    I am an Euthyroid CFS/ME patient with

    fT3 = 1.9 pg/ml (1.88 - 3.18) = 2.92 pmol/l (2.88 - 4.88)
    fT4 = 1.01 ng/dl (0.7 - 1.48 ) = 13 pmol/l (9.01 - 19.05)
    TSH = 0.97 µUI/ml (0.4 - 4)

    I have brain symptoms, head pressure, brain fog, memory problems, cognitive problems, and muscles symptoms, pain, stiffness, cramps, weakness, moving feet in the morning;

    Some supplements and drugs were helpful sometimes transiently, sometimes with a very limited improvement.

    A few days ago I decided to do one more trial with T3 and T4, trying different associations.

    And I quickly noticed that T3 was very efficient on both my muscle symptoms and brain issues.

    Anyone experimented this already?

    Do you think it is just an improvement that will precede a big crash?

    Could it be that my 35 years lasting illness is an intracellular hypothryoidism?

    Could it be that something in the blood of CFS patients prevents T3 and/or T2 hormons to do their job inside the cells?

    I don't want to be over optimistic, so I stay dubitative for the upcoming days, let's see what will happen...
     
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  2. Lipac

    Lipac Senior Member

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    What's your Reverse T3?
    Unless the others are way out of wack, the RT3 in any chronic illness is vital to check, if you have low thyroid symptoms.

    The only proponent writing about this is Dr Holtorff. He calls it a " Thyroid Conversion Disorder". It's when you make too much non functional t3 - due to about 12 things, but common and generally overlooked in chronic illness.

    Fortunately, my rT3 has been so bad over the years, an internist was convinced enough to give me Cytomel- pure T3. If I take any T4 I just get worse.

    The most obvious change in me is improvedments in dry skin, hair loss, body temperature, bowel function, ldl cholesterol- same as any type of hypothyroidism.

    The trouble is finding a Dr to keep you on it.
    The majority don't think this is a valid problem.
    Any form of hypothyroidism is miserable and eventually fatal.

    My grandmother died as a result of long term hypothyroidism- Diabetes, heart disease, and heart failure. The tests and treatment I've had weren't available to her. She didn't respond to dessicated Thyroid, or iodine supplements.

    Holtorff does a good job explaining this IMO and he's got a lot on the internet.
     
  3. MAF14

    MAF14 Senior Member

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    You beat me to RT3!

    Do you have links for these 12 things that cause RT3? I have high RT3 when not taking T3 or taking T4.

    But now I've gotten to the point where my fatigue is creeping back in pretty heavily even on T3 only.
     
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  4. Lipac

    Lipac Senior Member

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    :) my pet topic.
    They didn't test me at the UCLA thyroid clinic.
    It wasn't even a TOPIC in med school.

    So I was FLOORED when this was found to be a problem at a CFS clinic.
    I've checked it ever since.

    Without T3, my Thyroid works FINE...My rT3 just keeps going up.
     
  5. Lipac

    Lipac Senior Member

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    @MAF14
    I DON'T remember where I read that list...shoot! It was last fall, when reading something else. I remember heavy metals, pesticides were at the top... Boy. Can't recall.
    Might have just been Wikipedia- worth a try.
    Or maybe Holtorff again...

    BTW- when I started it again 3 years ago, I thought it was the answer to my creeping - back-in fatigue. Nope.

    It's never helped my fatigue or insomnia or pain.

    But... My cholesterol was never better!

    Because it can lead to Diabetes and severe early heart disease, it's important Not to have low t3/high rT3.
    Take it in spite of the fatigue if your labs are doing well.
     
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  6. aquariusgirl

    aquariusgirl Senior Member

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    Care to comment on my labs?

    Reverse T3 is 14 (8-25)
    T4 1.1 (0.8-1.8)
    TSH 1.74
    T3 2.8 (2.3/4.2)

    Progesterone was low on Dutch labs

    I calculated the T3/RT3 ratio as 20 ....which is ok according to the stop the thyroid madness folks.

    Any thoughts?
     
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  7. Lipac

    Lipac Senior Member

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    @aquariusgirl ...I don't have a medical license now, I retired it. So I shouldn't.
    I'll still you though, my rT3 in 2015 was 24 and my free T3 was 2.3...a point up or down respectively would have put new into the abnormal range. I had a not so great Dr but he gave me T3.

    Last March I didn't think it was doing anything so I quit for 3 months.
    My thyroid was working fine.
    My RT3 shot up to 29...

    BTW: I like whoever is in charge of Stop the Thyroid Madness- it started out as a Yahoo Group.
    Whoever it is knows thier biochem and endocrinology!
     
  8. Lipac

    Lipac Senior Member

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    @aquariusgirl I meant to say, compare your results to mine... And I think the STTM moderator knows her stuff.
     
  9. MAF14

    MAF14 Senior Member

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    @Lipac Thank you, hopefully I can google it

    @aquariusgirl By any chance do you have FREE T3 labs? That shows a lot more of whats going on than "TOTAL"
     
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  10. Lipac

    Lipac Senior Member

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    @MAF14 I thought of something else. The Fatigue Clinic Dr who found my high RT3, also added 5 mg hydrocortisone. Thyroid can put extra stress in the adrenals esp with long term illness.

    Stop the Thyroid Madness recommends HC low dose as well.
    They're also big on making sure your iron stores are good and there's no anemia.
    ( Also, best on an empty stomach, no calcium with it... Things that effect absorption)

    I can't get hc now, and my response to T3 isn't as dramatic..

    My cortisol wasnt abnormal on tests, but I definitely had better function with it plus thyroid.
     
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  11. pattismith

    pattismith Senior Member

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    thank you very much for all the answers!

    My rT3 and my Thyroid Binding Globulin (TBG) has been checked, but it takes 1 month for the result, and I couldn't wait that much to do the trial, I am really so bad...

    My iron store may be low (or my folates) because I have a slight anemia, unfortunately I don't do well with supplementing with one or the other so I can only raise my red meat consumption for now...

    Anemia is also a very known symptom of hypothyroidism, so it may disappear with thyroid supplementation as well...

    Seems that my T3 supplementation is helping during 9 hours after the intake, anyone already noticed this?

    @Lipac , yes I have read Dr Horltorf, and this is why I wanted to do a trial, however I know this is a controversial field and that even with a low T3 syndrome, the medical consensus does not advise any supplementation.

    By the way, my symptoms fits well with hypothyroidism but I don't have it all, my cholesterol is low for example, and I was not prone to weight gain until a few weeks ago.

    I read a scientific study stating that some pesticid can raise rT3 but I found NOT ONE STUDY about the effect or raised rT3 on the body.

    If you know of any, I would be interested to read it!
     
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  12. Misfit Toy

    Misfit Toy Senior Member

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    I have no thyroid. Thyroid removed and I have become a bit of a expert on reading labs. I read my labs.

    You are very hypothyroid. When I had a T3 that low, I was dying. I felt like it. You are to be in the upper range. Optimal labs are 3.7 on up for T3. A 2.8 would put you in severe hypo range.

    The range that you provide and that most follow for thyroid labs is outdated and based on male chimps. MALE CHIMPS. Very different than women.

    Your T4 is okay, but should be 1.8. Your T3 should be 3.7 on up. Most feel better with it at a 4.1.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @pattismith -I am on T3 only as I can't take T4. It makes me sicker than a dog. I can only say it has not cured me. I do not have my thyroid and believe that you need all hormones to do well. T1, T2, T3, T4 and so on. I can't take them. I do know that with my T3 being up, my pain throughout my body is less. I also can think better.

    I am on 68 mcg which sounds like a lot, but when you don't have thyroid, it should be 75 mcg on up. The amount I am on right now is the equivalent to 2.5 grains of armor or an NDT.

    Anyway I would say keep taking it. The docs are wrong. Endocrinologists are the worst. I finally found one who said that T3 is what is needed and it doesn't matter how you get it, whether it be by taking T4, or just straight T3...that is the way to go.

    For those who have conversion issues or AI diseases...they usually don't convert T4 to T3 hence the RT3 issue.

    I converted fine. I was just so allergic to T4 and had hives everywhere.

    BTW, is that lab work done while on T3? No...right? Your TSH is low.

    Mine was like that. I had low T3 and low TSH which is whacko. A 1.9 would make me dead. Free T3 of 1.9. It's amazing if you can walk!
     
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  14. pattismith

    pattismith Senior Member

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    I just hardly can walk for 15 years now...:)

    But I was always told my thyroid was OK, and my thyroid hormons were always in the normal ranges.
    I will find an older thyroid panel to show you, unfortunatly I can't track it up to my younger age when I had my first panel done (I was 20 years old and was just starting my school) because I didn't keep it...

    Edit: Dr Holtorf hypothesis concerning CFS/ME/thyroid is that we have a problem of transport of T4 and T3 into our cells, which produces intracellular hypothyroidism, and another Doc (Tammas Kelly) agree with him more or less

    http://forums.phoenixrising.me/index.php?threads/cfs-me-and-intracellular-hypothyroidism.57031/
     
    Last edited: Jan 18, 2018
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  15. Wishful

    Wishful Senior Member

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    Supplemental T4 and T3 don't have a noticeable effect on me, but supplemental T2 has a significant effect. I need the T2 (or iodine, since I can't find a source of T2 anymore) every 21 days, or my general symptoms increase and stay increased. I don't know why it works this way, it just does. My guess is that the T2 is necessary for production of something in my cells that is involved with the ME disorder and isn't being produced at the required level.

    My tsh is borderline hypothyroid (~8 or so), and I do have the antigen, but I don't have the symptoms normally associated with hypothyroidism (my preferred room temperature is 12C) and I don't respond to supplemental T4 or T3, so I don't believe that I have hypothyroidism. I believe my tsh is elevated due to neuroinflammation rather than a thyroid problem.

    One problem with taking supplemental T4 or T3 is that it would probably reduce your thyroid's production of T2. I do wish that labs tested for T2 levels. How can doctors properly advise you on treatment if they aren't measuring the full set of hormone levels? At present, they're just pretending that T2 doesn't affect anything.
     
  16. MAF14

    MAF14 Senior Member

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    Why do you say that? Could it be "cellular" hypothyroidism where the hormones are being blocked at the receptor? I want to say this is my issue as I've taken up to 200mcg T3 before and noticed no side effects.... I can't figure out what it is.
     
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  17. MAF14

    MAF14 Senior Member

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    Thanks @Lipac unfortunately similar to T3 I was on full replace HC as well and noticed no differences... I tinkered doses until I realized I could drop it cold turkey.

    Even when my diurnal cortisol kit showed good values as well as Iron panel T3 didn't have any noticeable affect
     
  18. JeanneD

    JeanneD Senior Member

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    May I ask... what symptoms are people looking at when they feel their thyroid medication protocol is not working? Or is it simply that you don't notice any change in any of your symptoms? Just curious because I go by labs, which may not work for everyone. None of the changes have led to sudden improvement of any particular symptom. It's been a more slow and subtle improvement. I'd like to know what specific symptoms I should be looking at if I change my protocol.
     
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  19. pattismith

    pattismith Senior Member

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    Jeanne, we are not hypothyroid patients in this thread, so the problems may be differents.
    Any way it seems that many hypothyroid patients still suffer when they take exclusive T4 treatment, some do better with T4+T3.

    it seems that thyroid resistance can affect euthyroid and hypothyroid patients as well.

    I am currently doing some trials with T4 and T3, and it seems that I am better under T3 alone, but it's only a week trial so too short to say.

    I still wait my reverse T3 test result, do you have this test done?

    My profile has some similarities with yours, I have low CD8 and low immunity.

    Do you have your D vitamine test done? ( 1.25 OH2D and 25 OH D)?
     
  20. JeanneD

    JeanneD Senior Member

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    Ah, my apologies for not fully understanding. I'll blame brain fog. :p
    Yes, the last several weeks ago. I've had them for many years. These results are after years of tweaking my thyroid meds, so these are results with meds.

    TSH w/reflex to FT4 -- 3.15 labeled normal
    T3 free --4.0 normal
    T3 total -- 125 normal
    T3 reverse -- 16 normal

    Again, yes, for many years. It had not been possible to get my D3 into normal range with the highest doses my doctor was willing to recommend. Then suddenly I was nicely in middle range (with a highish dose of D3). That was right about the time I started IVIG. That could very well be a coincidence.
     
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