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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. K

    Hydrocortisone + Thyroid Hormone (The Quest Continues)

    Interesting stuff on the T2! I've never had that pulled, so maybe it's time. I took diindolylmethane (DIM) for a few years, and it was one of the only supplements that significantly helped me: dramatic reduction in brain fog/dissociation, increase in libido, etc. (I had started testosterone...
  2. K

    Hydrocortisone + Thyroid Hormone (The Quest Continues)

    My inflammatory markers have been very good, namely sedimentation rate and CRP. I have muscle weakness related to low-grade PEM, but nothing much other than that. I do unambiguously have an issue with my thyroid increasing in size (not nodules or goiters, the entire thyroid is slightly larger...
  3. K

    Hydrocortisone + Thyroid Hormone (The Quest Continues)

    Has anyone had success with taking hydrocortisone as a means to tolerating thyroid hormone, i.e., thyroid hormone at a certain dose threshold starts to make you feel worse, and *not* hyperthyroid? For whatever reason, I had to increase my levothyroxine (I can't tolerate T3, whether as a...
  4. K

    Adenosylcobalamin/B12: 15 pounds lost and counting, therefore mitochondrial issue?

    A few months ago I serendipitously tried adenosylcobalamin/adenoB12, the mitochondrial form of B12, after a tip from reading an article by Dr Ben Lynch. Within a few weeks I noticed I was losing weight, and now a few months later I'm around 15 pounds down without changing anything else. I...
  5. K

    Carnitine, Depressed Thyroid Function --> Up Thyroid Meds?

    Yeah, that's what I was thinking. And heck no to the endo. :)
  6. K

    Carnitine, Depressed Thyroid Function --> Up Thyroid Meds?

    I started taking 500 mg of acetyl-l-carnitine over a month ago and began to notice a positive benefit in mood, energy, and less muscle weakness. However, these effects lasted for 2-3 weeks, after which I began noticing a drop in energy, needing to sleep more than I did before, and occasional...
  7. K

    Low thyroid?

    @Iritu1021, dead link. Any chance you could summarize what worked for you here?
  8. K

    Low thyroid?

    @TiredBill Doctors such as Ben Lynch talk about needing to make sure mitochondria are supported before adding thyroid replacement, or else you end up effectively smashing on the gas pedal with an empty gas tank. He and others recommend PQQ, d-ribose, creatine, carnitine, ALA, and a few others...
  9. K

    Low thyroid?

    Hi patti, can you tell me more about your reaction? Also, why were you put on prednisolone, and any chance you had low cortisol as a reason? I had low-normal morning cortisol, and we tried about 30 mg of hydrocortisone in four divided doses and it didn't seem to do anything, but I wonder if I...
  10. K

    Low thyroid?

    The best thyroid doctors out there note that a comprehensive physical looking for signs of hypothyroidism and a trial of thyroid hormone are the best ways to rule out hypothyroidism. TSH is an unreliable measure; for example, it decreases with age, leading to a reduction in T4 and T3, giving...
  11. K

    How much CoQ10 do you take?

    FWIW, my PEM got worse after getting on thyroid meds (only 50 mcg), which was a reluctant but worthy tradeoff for lower brain fog.
  12. K

    Hypokalemia (Low Potassium), Anyone?

    Yeah, me too. I've had an echo and another test to check for heart issues but everything looked great. Electrolytes determine how your heart works, so maybe it's not the heart per se as it is the kidneys. I'm planning on looking into a nephrologist soon.
  13. K

    Hypokalemia (Low Potassium), Anyone?

    @Mary, @*GG*, @GodGenghis, @wastwater, @ahmo and others: Do you ever get noticeable changes in water retention, such as accumulations in your abdomen or elsewhere? Any noticeable changes on muscle size (seeing how muscle also has cells and so needs in the intracellular potassium to keep to...
  14. K

    Hypokalemia (Low Potassium), Anyone?

    Ever get night sweats? Also, do all those things listed happen at the same time, or do they also happen separately?
  15. K

    Hypokalemia (Low Potassium), Anyone?

    Thanks so much, Mary! Interestingly, I have spouts of something akin to a presyncope, feeling 'thin" like my consciousness is fading but without feeling lightheaded, directly attributable to taking 1) a methylfolate supplement with way too much (10x as the RDA), 2) any thyroid medication with...
  16. K

    Hypokalemia (Low Potassium), Anyone?

    Check sodium and aldosterone, as hyperkalemia can point to low aldosterone. Which itself could explain possible symptoms related to CFS.
  17. K

    Hypokalemia (Low Potassium), Anyone?

    I'm curious to know the symptoms of anyone who has or has had hypokalemia or near-hypokalemia. This is a condition that's often improperly undiagnosed based on serum (CMP) labwork, when intracellular/RBC levels can reveal problems, and have with me (levels below the range). What are the...
  18. K

    Levothyroxine and What it Really Does to the Body

    I found this on the Googles. Anyone have any thoughts on thyroid hormone (not just T4, which converts to T3, but also T3) could lower potassium? I'm reading up on how hyperthyroidism is associated with hypokalemia (low potassium), and I've also noticed a gradual decline of potassium since...
  19. K

    How much CoQ10 do you take?

    Thanks @ljimbo423! So anyone have an idea of what the 1000-1500 mg of ubiquinone would come to in terms of ubiquinol?
  20. K

    How much CoQ10 do you take?

    Any difference in ubiquinol vs ubiquinone for people here?
  21. K

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    Well...at least we know Bono's circadian rhythm is pretty great! ;)
  22. K

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    Might be easier to download the (free) f.lux and Twilight program and app, respectively. They do the same thing as blue blockers without the pain of wearing them.
  23. K

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    @SuzieSam, @Mary, Yeah, 6 mg is way too much, technically 20 times as much as the body should produce endogenously (300 mcg), and even if your melatonin is "low", you're probably producing a good majority of this 300 mcg amount. I was just talking with a friend who said he liked taking...
  24. K

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    Just a technical nerd note: cortisol is to the stress response as an imaginary caboose-braking system (cabooses don't carry the brakes) is to a train. If cortisol is up, this means by definition that other compartments in the HPA response, notably norepinephrine (which starts it in the brain)...
  25. K

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    The interesting thing here is that vitamin C actually increases norepinephrine (a stress hormone/neurotransmitter) because it (with copper) is a cofactor (speeds up) for the dopamine beta-hydroxylase enyzme, which converts dopamine into norepinephrine. So this means that you're getting some...
  26. K

    strange thyroid stuff

    Lowish free T4 might not be a problem. But you might have high thyroid binding globulin, which means lower free thyroid levels (fT3/4); excessive estrogen is one cause for this, for example. Aside from what most people say, (free) T4 does do a few peripheral things but mostly it's an inactive...
  27. K

    Phosphatidylcholine?

    Oh, those are almost certainly high estradiol levels, especially the gynecomastia (moobs). You might want to see if you can get a doc to pull your estradiol (and while you're at it total testosterone). There are otc ways to lower it and/or change the bad estradiol metabolites (like...
  28. K

    Phosphatidylcholine?

    Yikes! What are these feminizing effects, and I'm assuming the feminizing effects were from the soy, or...? Interesting that it gave you energy. Any PC you can take that isn't soy or lecithin based that could help you circumvent this feminizing problem?
  29. K

    25 mg Lactic Acid in Kombucha: Problem for PWCs?

    I don't think I "fit" the definition and symptoms of chronic fatigue syndrome (e.g., I don't fulfill all the medical criteria, symptoms seem to sway relative to hormones and possible influence on thyroid, have tried most supplements for CFS with no benefit), but I do have post-exertional malaise...
  30. K

    Phosphatidylcholine?

    @kangaSue, what do you think of the idea of phosphatidylcholine increasing acetylcholine, thereby balancing sympathetic and parasympathetic nervous systems and so reducing symptoms of sympathetic dominance (like hippus/flickering pupils in light, anxiety, insomnia, etc.)?