Hi, I just read your posts from 5 yrs ago. How is your health and might you have any more insights into discussed conditions? I’m one of those old women (described in your writing) am thought to maybe have Long COVID (no test August 2020 here in Northern Ireland) or ‘post-viral with neurological overlay...’ currently due to have brain/spinal MRIs. I really enjoyed your ideas especially stuff on thyroid etc I think I present as M.E./CFS and have no answers. All good wishes and thanks. (As thinking is tricky I mostly listen to books so if you have a recommendation, cool).
Hi Jane, in short, my plan to fix a disease I’d made up myself by ordering dodgy drugs off the internet worked perfectly, and I haven’t thought of myself as ill for the last five years. I still take thyroid daily though, and I can’t give it up without getting the CFS symptoms back.
I’ve no idea what was ever wrong with me, or whether it’s still wrong or got better on its own years ago, but I’m totally convinced that thyroid drugs fixed it or at least made it tolerable. My TSH is almost always suppressed, i.e. 0, and my free T4 and T3 levels are usually at the high end of the normal range. Any doctor worth his salt is going to tell me to drop my thyroid dose with those readings, and they do, but if I try I just feel awful for a bit, and all the old symptoms come back until I put it up again. I have absolutely no symptoms of hyperthyroidism/thyrotoxicity at my happy dose.
But sadly, I know of at least a couple of CFS patients who’ve tried it in good faith (one was a close friend at the time I was working all this out five years ago, who came down with CFS a couple of years ago) and not had it work. All they report is a feeling of overstimulation, like with caffeine, and neither of them continued with it. My experience was more like a sudden miraculous unambiguous fix.
So your mileage may vary, but try it anyway. CFS is awful, thyroid’s not too dangerous.
The best book I read was Gordon Skinner, ‘Diagnosis and Management of Hypothyroidism’. John Lowe’s book ‘The Metabolic Treatment of Fibromyalgia’ was also very good. Unsurprisingly they give conflicting advice and are both out of print. Everything else has at least a bit of bullshit in it. Mind how you go and good luck!
I should probably do a follow up post, five years on.
Coronavirus-wise:
Recently, my coronavirus vaccine jabs (AstraZeneca), brought on bad fatigue and listlessness, the first one for a week, the second one for more like two months. Normally if I feel fatigued I put my thyroid dose up a bit and it goes away, so I tried that, but all it did was make me anxious and hot, as well as fatigued and listless, so I put it back down again.
That was the most severe reaction of anyone I know to the vaccines. Lots of people get fatigue for a week, but two months is pretty much unheard of I think.
The fatigue seems to have finally cleared now, and I’m back to feeling as bouncy as before on the same dose of thyroid as I was originally on.
I asked on both reddit’s r/hypothyroidism and on r/cfs, and I got a couple of replies on r/hypothyroidism saying that they’d had no such effect. And three on r/cfs saying that they’d all had something similar.
I have a feeling that the tiredness is something to do with the innate immune response trying to shut the body down to deny resources to viruses, and I wonder if that response gets stuck on, either by accident, or because you don’t really clear the virus (like with the herpesviruses).
Best of luck on your journey, and I hope you find your miracle like I did. Most CFS just gets better on its own eventually I think, so hang on in there. But that doesn’t mean that it’s not worth trying the cheap, safe things that various loonies like me reckon might help, just in case they do!
Thanks, again for your thoughts and experience.
I had AZ first dose (April 2021), 12 hrs later back to severe headaches- like headaches experienced during unknown virus (August 2020) plus shaking from head to toe for under 3 hrs- I was fine within two days, just tired. As I continued to be extremely fatigued etc by time second AZ appointment came, given more info on rare blood clots, I did not take second AZ, but (another month later) had a Moderna and will take second Moderna. Given how ill I’ve been for a year I guessed that I’d be better with an Mrna as opposed to adenovirus vacc. First Moderna left me with a sore arm, slight sore throat and tired—none of the extreme pain & shaking of AZ. Maybe I’ll react to the second Moderna...It seems to me that insights into ME/CFS and Long COVID, here in the UK, are few. I will read your posts & comments again, and look further into treatment for thyroid. Thanks, it is good to hear that you found a route to wellness.
Hi, I just read your posts from 5 yrs ago. How is your health and might you have any more insights into discussed conditions? I’m one of those old women (described in your writing) am thought to maybe have Long COVID (no test August 2020 here in Northern Ireland) or ‘post-viral with neurological overlay...’ currently due to have brain/spinal MRIs. I really enjoyed your ideas especially stuff on thyroid etc I think I present as M.E./CFS and have no answers. All good wishes and thanks. (As thinking is tricky I mostly listen to books so if you have a recommendation, cool).
Hi Jane, in short, my plan to fix a disease I’d made up myself by ordering dodgy drugs off the internet worked perfectly, and I haven’t thought of myself as ill for the last five years. I still take thyroid daily though, and I can’t give it up without getting the CFS symptoms back.
I’ve no idea what was ever wrong with me, or whether it’s still wrong or got better on its own years ago, but I’m totally convinced that thyroid drugs fixed it or at least made it tolerable. My TSH is almost always suppressed, i.e. 0, and my free T4 and T3 levels are usually at the high end of the normal range. Any doctor worth his salt is going to tell me to drop my thyroid dose with those readings, and they do, but if I try I just feel awful for a bit, and all the old symptoms come back until I put it up again. I have absolutely no symptoms of hyperthyroidism/thyrotoxicity at my happy dose.
But sadly, I know of at least a couple of CFS patients who’ve tried it in good faith (one was a close friend at the time I was working all this out five years ago, who came down with CFS a couple of years ago) and not had it work. All they report is a feeling of overstimulation, like with caffeine, and neither of them continued with it. My experience was more like a sudden miraculous unambiguous fix.
So your mileage may vary, but try it anyway. CFS is awful, thyroid’s not too dangerous.
The best book I read was Gordon Skinner, ‘Diagnosis and Management of Hypothyroidism’. John Lowe’s book ‘The Metabolic Treatment of Fibromyalgia’ was also very good. Unsurprisingly they give conflicting advice and are both out of print. Everything else has at least a bit of bullshit in it. Mind how you go and good luck!
I should probably do a follow up post, five years on.
Coronavirus-wise:
Recently, my coronavirus vaccine jabs (AstraZeneca), brought on bad fatigue and listlessness, the first one for a week, the second one for more like two months. Normally if I feel fatigued I put my thyroid dose up a bit and it goes away, so I tried that, but all it did was make me anxious and hot, as well as fatigued and listless, so I put it back down again.
That was the most severe reaction of anyone I know to the vaccines. Lots of people get fatigue for a week, but two months is pretty much unheard of I think.
The fatigue seems to have finally cleared now, and I’m back to feeling as bouncy as before on the same dose of thyroid as I was originally on.
I asked on both reddit’s r/hypothyroidism and on r/cfs, and I got a couple of replies on r/hypothyroidism saying that they’d had no such effect. And three on r/cfs saying that they’d all had something similar.
I have a feeling that the tiredness is something to do with the innate immune response trying to shut the body down to deny resources to viruses, and I wonder if that response gets stuck on, either by accident, or because you don’t really clear the virus (like with the herpesviruses).
Best of luck on your journey, and I hope you find your miracle like I did. Most CFS just gets better on its own eventually I think, so hang on in there. But that doesn’t mean that it’s not worth trying the cheap, safe things that various loonies like me reckon might help, just in case they do!
Your explanation of the chronic tiredness as a ‘stuck immune response’ or inability to completely clear the virus is useful to consider.
Thanks, again for your thoughts and experience. I had AZ first dose (April 2021), 12 hrs later back to severe headaches- like headaches experienced during unknown virus (August 2020) plus shaking from head to toe for under 3 hrs- I was fine within two days, just tired. As I continued to be extremely fatigued etc by time second AZ appointment came, given more info on rare blood clots, I did not take second AZ, but (another month later) had a Moderna and will take second Moderna. Given how ill I’ve been for a year I guessed that I’d be better with an Mrna as opposed to adenovirus vacc. First Moderna left me with a sore arm, slight sore throat and tired—none of the extreme pain & shaking of AZ. Maybe I’ll react to the second Moderna...It seems to me that insights into ME/CFS and Long COVID, here in the UK, are few. I will read your posts & comments again, and look further into treatment for thyroid. Thanks, it is good to hear that you found a route to wellness.