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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. BadBadBear

    BadBadBear Senior Member

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    I have noticed the same thing - in the last two weeks of the cycle I definitely feel more hypo. Had never taken the step of increasing meds, but I think I'll try it.
     
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  2. BadBadBear

    BadBadBear Senior Member

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    I have read anecdotally that T3 should not be split as one part may be the med and another part may be all filler. Anyone know about this? I split 25's into 6's and would like to go lower. Just thinking further division of my 6's might be asking for trouble.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2974142/

    Tablet Splitting of a Narrow Therapeutic Index Drug: A Case with Levothyroxine Sodium

    ... "Also, it was found that with the tablets which were directly compressed without any granulation step, the distribution of levothyroxine sodium was not homogeneous on the surface of the tablets. Splitting such tablets could prove detrimental if sub- or super-potency becomes an issue for narrow therapeutic drugs. In-house formulation efforts revealed that type of binder plays an important role in splittability of the tablet to provide more consistent dose uniformity for levothyroxine sodium tablets."
     
    Last edited: May 14, 2018
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  3. Iritu1021

    Iritu1021 Breaking Through The Fog

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    I never had much luck breaking Cytomel, even with pill cutter. Armour is easy to split into tiny chips very easily while Naturethroid is harder to break but easier to cut. I have not tried Westhroid or Efra so don't know what their consistency is. The best way to get low and consistent doses would be to get it prescribed and filled through a reliable compounding pharmacy.

    This is a quote from Dr. Blanchard:

    "I started by having people to take 5 mcg thinking it was a "low" dose. I very quickly found out that patients in good T4 balance were extremely sensitive to T3. My practice in the 1990s was to have the patient split the 5 mcg Cytomel dose into halves or quarters. Results at the time were not consistent but there was enough success to make me persist despite the medicolegal risk of going against standard wisdom in the field. In my experience, what is necessary are 0.1/0.3/0.5/1.0 mcg capsules. In between dosages could be then be given by combining two or three of the manufactured dosages".

    The other thing that he mentions that may cause someone to had a bad reaction to T4 is the povidone present in the filler. He only used Levoxyl and Tirosint brands for T4 as they are the most pure ones.
     
  4. BadBadBear

    BadBadBear Senior Member

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    @Iritu1021 - thanks, I was planning to ask my Dr. to switch to the 5 mcg tabs at my appointment tomorrow.

    I have not had major issues splitting the 25 mcg tabs of Cytomel, just still feeling overstimulated and am more than willing to decrease my T3 dose. I'll do blood work on Thursday before I decrease, though, and verify that my T4 is still suppressed at my current dosing before I lower my T3 dose.
     
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  5. BadBadBear

    BadBadBear Senior Member

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    Lowest T3 dose we could come up with was in the 15 mcg Armour tabs - they are around 2 mcg T3, but the tabs are tiny and difficult to split. I plan to work on reducing my early AM dose from 6 mcg down until I find a place where I seem to function better.

    My doc said not to worry about labs at the moment and to adjust based on how I'm feeling.
     
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  6. Hyperflux

    Hyperflux

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    Compounded sustained release T3 sucks coming from Cytomel, I feel so sleepy. My new pharmacy messed up my rx so I have to take it for a couple of days until the Cytomel comes in. Is this what NDT feels like too compared to instant release T3?
     
  7. Iritu1021

    Iritu1021 Breaking Through The Fog

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    As I wrote before, it's much easier to cut Naturethroid into equal quarters than Armour as it has firmer consistency, Armour is very "crumbly".
     
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  8. Iritu1021

    Iritu1021 Breaking Through The Fog

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    If you've been on instant release before then your body may need time to adjust to slow release. Your adrenal response, your neurotransmitter function are all going to be affected differently on slow release. It also doesn't get absorbed as well so if you stayed on the same dose, you probably are getting at least 20% less. Coming off high doses of T3 is very hard, it's a lot like coming off stimulant drugs.
    Armour feels very much like T3 in short term - right after you take it. To me it actually felt a little "smoother". The T3 in it works fast, especially if taken sublingually but it will feel different in long term (>2 weeks) because of T4 when used in regular doses. One grain of Armour has 9 mcg T3 and 38 mcg T4.
    If you use it in regular doses than it feels completely different than either T3 or T4 on its own, at least to me it does. It also has other things in it, such as T2, iodine - essentially everything that thyroid gland makes.
     
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  9. BadBadBear

    BadBadBear Senior Member

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    My doc says Naturethyroid is not available at any of our area pharmacies, alas. She would write a script for Cytomel, but I wanted to try NDT.
     
  10. Iritu1021

    Iritu1021 Breaking Through The Fog

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    That's right, there has been a lot of shortages in Naturethroid lately, not clear why. And USP Thyroid powder was removed from the market too, apparently it got bought out by Armour or something like that. There seems to be some strange "NDT conspiracy" going on lately.
     
  11. BadBadBear

    BadBadBear Senior Member

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    I thought I'd taper from 6 mcg Cytomel to ~4 mcg T3 in NDT, then in a while down to 2 mcg. Can do that without splitting. Then I'll need to get creative to go lower. :)

    I asked my doc about her patient population and she said most of them are using NDT and good on it. A few cannot tolerate T3 meds and are on levo only. The remaining few are T3 only. She didn't have anyone else trying to micro-dose T3 at the moment, but is interested to see how it goes and will be following my labs.

    I am so grateful to have an open-minded doc!
     
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  12. Iritu1021

    Iritu1021 Breaking Through The Fog

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    Sounds like a good plan. Are you going to lower your T4 dose too to adjust for Armour?
     
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  13. BadBadBear

    BadBadBear Senior Member

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    I am trying to stay in the ball park of 100 mcg T4. I have 50 mcg T4 tablets and a few 25's so I think I can get close by dividing the 25's.

    I am going to switch my AM dose tomorrow and hope I don't die. I have an important event to survive. ☺. Guess I could add a NDT dose to my midday T4 if I'm struggling? Its a horrible week to change things but I don't want to wait.

    Hopefully NDTs 'slower burn' compared to Cytomel will be helpful.

    Thanks so much for your insight and encouragement in my experiment! Even if it doesn't work out, I'm game to try it.
     
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  14. Iritu1021

    Iritu1021 Breaking Through The Fog

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    @BadBadBear,

    Yes, try taking a little with T4 and see how it affects you. I think cutting down T4 by 12.5 mcg should be close enough. With time, you may even be able to decrease it more since going down on T3 will extend your T4 half-life. Remember that it takes about 3 days for T3 dose to fully balance out and it takes about 4 weeks for T4 dose to balance out (though you may have a pretty good idea around 2 weeks).

    I'm holding my fingers crossed for you! I know how scary those T4/T3 disequilibrium states can be, I've done my time in those galleys... Wondered many times myself how I was going to survive but I made it out and I'm sure you will too! Feel free to PM me if you have questions.

    Good luck with your big event!
     
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  15. pattismith

    pattismith Senior Member

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    @bertiedog

    Pam, as we need both T3 and cortico to function, I wonder if we don't simply suffer from hypopituitarism...
     
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  16. BadBadBear

    BadBadBear Senior Member

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    I have wondered if there was an upstream infection or something for me as well, as the pituitary is upstream from many of my body issues... Hypothalamus or pituitary. Both the HPA and the HPT (thyroid) axis seem to be seriously askew. My cortisol has the see-saw pattern of highs and lows, but I have not required replacement.
     
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  17. BadBadBear

    BadBadBear Senior Member

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    Thank you, @Iritu1021

    After the first day of my event (Wednesday), I decided to cut the T3 level from 4 mcg to 2 mcg in NDT (plus 100 T4 split into two doses during the day). On the 4 mcg I had a good morning and early afternoon, but died around 5 PM. I was slightly resuscitated by a tiny dose of evening NDT (1/2 of a 15 mcg NDT + 25 mcg T4) but then had insomnia. Hence my decision to cut down the T3 dose sooner than I had planned.

    I had a day off of the event, then yesterday had another event day and did well on a 15 mcg NDT tab (2 mcg T3) + 50 mcg T4 at 4 AM, then I took another 50 mcg dose of T4 at 6 AM when I got up. That held well and I was able to get through my evening chores of feeding animals and scooping up horse manure when I got home without dying. And I slept.

    I will probably do labs at end of month and see where things are. I will have been on ~100 mcg T4 for 2 months at that point, with the complication of decreasing T3 doses, hopefully the T4 suppression will start to show changes in my labs.

    I am not having air hunger and other issues that @Iritu1021 had suggested might be caused by T3 when I was on T3 only. I do think my body got very sensitive to T3 only, I am really crossing my fingers that this change-over can 'stay good'.
     
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  18. Iritu1021

    Iritu1021 Breaking Through The Fog

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    Thanks for the update! Glad to hear that it's going well so far. Keep in mind that it's a slow adaptation process, all your neural receptors had to adopt to high T3 doses and it will take time for them to regulate themselves back - some adjustment period is to be expected.

    If you're not using a slow release formulation than you probably will need to use NDT 2-3 times per day to make it last through the day. I've literally used "specks" of Armour under my tongue at one point when I was extra-sensitive and I couldn't believe at first how much I was able to get out of such miniscule doses.

    I'm pretty sure that my disease can be summed up as primary hypothyroidism + central hypothyroidism + severe HPA dysfunction. I blame it primarily on my hypothalamus rather than pituitary since hypothalamic dysfunction is so well documented in CFS and fibromyalgia.
     
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  19. pattismith

    pattismith Senior Member

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    update

    My trial to add 25 mcg T4 had failed, I felt quickly bad again and I had to stop it. 24 hours after the stop, I improved while keeping my T3 + cortisol protocol.

    I will try again later a smaller dose of T4 to see if I can tolerate it...Which is not sure because of my deiodinases dysregulation...
     

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