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@Agapanthus I saw an endocrinologist a couple of years ago who was all about the TSH :banghead:. It's SO hard, IMPOSSIBLE, to screen them ahead of time! I got the NDT through a private doctor who I've lost confidence in. That's why I've gone back to thyroxine. Feeling so awful now, I'm not sure...

@Arnie Pye such a sensible thing to do - why bother with bloody annoying, uneducated doctors when you know what you're doing? Thanks so much for the testing info. It's an excellent help.

Please God by me! @Arnie Pye! Are u in the UK? Amazing that you handle all blood tests etc yourself. EDIT: I'm such a twit - of course you're in the UK! Only a couple of days ago I wrote to you about the crap NHS and stuff. See - brain malfunctioning appallingly.

Thank you so much for your support @Agapanthus :heart: It all gets me so down, and I've never felt truly well since my thyroid diagnosis 14 years ago, 4 years before I collapsed with ME. I apply DHEA transdermally for my non existent levels. But that's not for the adrenals really? Like you...

I'm so sorry for hijacking your thread, @Agapanthus! @Helen with a morning blood test, I'm slightly over range with cortisol. Which was a huge surprise! My symptoms, on top of regular ME, total exhaustion! Total! Barely brush teeth. Couldn't shower for 4 days. Normally only that bad if I go...

Thanks so much for responding right now @Arnie Pye! I'm very wary of prescription level pharmaceuticals from abroad, particularly NDT which might be sensitive to temperature variability. With it being vital to my wellbeing so fundamentally, it's scary to risk getting junk. I might do it with...

Please forgive me for jumping on your thread @Agapanthus, but I think you'll understand my desperation: Two and a half weeks ago I switched back to T4 only from Natural Dessicated Thyroid and I feel awful. Can hardly move. There's ME exhaustion and thyroid exhaustion, and this is definitely the...

I was recommended to try liposomal glutathione supplements from someone on PR a while ago. But they were so expensive I didn't bother. Would this be better for those sensitive to the powder, though?

I'm pretty sure it's glutathione we want, isn't it? Comment from brain dead and clueless, too tired to Google it, over here losing brain cells by the second.

@Agapanthus you have my every sympathy. To be doing better, then have it snatched away is too cruel. I empathise with your difficulty in getting the establishment to listen to what patient groups have found to be true about thyroid treatment. It's a frustrating nightmare. I have very little...

Love this @Sue Klaus. It's excellent. I've misplaced my anger and stubbornness. It's restful to be too exhausted to rail against the bars of my prison /refuge, but I've also lost myself. Ahhh. Perfectly expressed.

:heart_eyes::heart:

Nothing to add to your discussion, people, but every time I look down the list of threads and see, "Sickness Behaviour" listed as a title, I want to bloody scream.

Chronic - all of the above - Syndrome. You nailed it.

This is very interesting, thank you @Sly Saint It would be horrendous of them to stop you having Nimodipine, if it's stabilising you, @Dechi. Is the problem the long-term use of it, that's not been researched? Hell, if the alternative is to decline, then isn't it in your best interest to...

I'm too brain dead to read your substantive discussion, but I think it's worth anyone who has serious fatigue alongside their ME, trying stimulants. Carefully. Very carefully. The beauty of them is that you can take a low dose of Ritalin once, and even know from that if it is helpful or not...

My neurologist has great success using stimulants with people who have MS to help with the fatigue that comes with that illness. But when I tried Modafanil, I ended up alert and feeling more capable, but without the energy necessary to follow through. Crash.

Finally! I think I'm on the right track. Decreased brain mitochondrial energy reserve. These mechanisms may induce biochemical shifts, leading, possibly via cortical spreading depression, to migraine attacks by means of activation of the trigeminovascular system. There may be defects in the...

All I have to say is, "ARRRGGHHHHHHHH!" Thank you for listening.

@Valentijn Fascinating, thank you. Do you have MELAS? I've pondered Mitochondrial Disease, but I'm the only person I know of in 3 generations of my family to be laid up ill like this with anything at all. But of course, I could just be a lucky rare collision of 2 recessive gene carriers...