Jesse2233
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These options are oversimplifications, but it will still be interesting to see if there's a consensus
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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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My own pet theory (based on only partial understanding of the latest discoveries, granted) is that an initial infection or other insult prompts the immune system to release antibodies, which end up mistakenly attacking the membrane of mitochondria within the cell, leading to disruptions in energy production. With rest, inflammation decreases, which leads to a lowering of the release of antibodies and thus less energy disruption, i.e. symptom improvement. The opposite occurs with exertion, leading to P.E.M. Rituximab is so effective because it indirectly decreases the level of these malfunctioning antibodies.
Again, this is just based on my somewhat casual studies of the science. My brain fog has prevented me from studying it further, so my theory probably has some flaws in the biochemistry involved. But just throwing it out there.
I think there is not one single cause for a heterogenic disease. You forgot the most importent one: The autonomic nervous system (ANS). There is where the action is At least for a subgroup, not all CFS/ME patiënts! That is my opinion.
This may be the case for some people, but it's definitely an oversight for them to assume that all CFS cases are just badly managed thyroid and adrenals. I have continually had both tested over the years, always annoyingly perfect. I think that people with a certain disease, like doctors with a certain speciality, tend to see things through the lens of that disease/speciality. It's not necessarily a bad thing, but it's important that they don't overlook other things and make people feel bad for not believing or fitting in to every word they say.The thyroid 'camp' do not believe in CFS but think it's a badly managed thyroid and adrenals.
that is the theory i am favoring as well given what current research is showing. Plus the aspect of our indiviual genome/microbiome affecting which symptoms each person ends up having/not having.My own pet theory (based on only partial understanding of the latest discoveries, granted) is that an initial infection or other insult prompts the immune system to release antibodies, which end up mistakenly attacking the membrane of mitochondria within the cell, leading to disruptions in energy production. With rest, inflammation decreases, which leads to a lowering of the release of antibodies and thus less energy disruption, i.e. symptom improvement. The opposite occurs with exertion, leading to P.E.M. Rituximab is so effective because it indirectly decreases the level of these malfunctioning antibodies.
Again, this is just based on my somewhat casual studies of the science. My brain fog has prevented me from studying it further, so my theory probably has some flaws in the biochemistry involved. But just throwing it out there.
@mermaid, Hashimoto's is as you know well is an autoimmune disease. It is not just badly managed thyroid and adrenals. The antibodies are the proof. You can fix it for a while (that it take one so many years, in your case its 6 years) and then it's not fixed again. Because antibodies change the game, again. So, Hashimoto's is not fixable, it's a myth that supplementing tyroxine hormone's going to sort Hashimoto's hypothyroid. It's organ failure due to autoimmune disase.
@purrsianThis may be the case for some people, but it's definitely an oversight for them to assume that all CFS cases are just badly managed thyroid and adrenals.
@erin Yes, I was probably just using shorthand there, but of course the thyroid and adrenals are key - why did the antibodies start attacking in the first place? (actually in my case it did seem to be triggered by a long period of stress).
My early stages of Hashimoto's, I now can see was hyper thyroid. I was loosing weight, strange bowel movements, terrible palpitations. At that time I had no idea about Hashimoto's, never heard the name. I was very frightened that I was having a heart problem. I went to see a cardio, he prescribed beta blockers to protect the muscle and passed me to the endo. The thyroid tests were normal, I had no treatment. I was so sick I went for a private endo, he tested the anti bodies and also a mr scan showed damaged thyroid gland, the structure proved be Hashimoto's. But again he did not put me on thyroid supplement. He insisted until the tests are abnormal I won't be taking thyroid supplement. And now my thyroid gland is caput, I am so sick and I don't even respond to thyroid supplement. It is not helping me as anti bodies are changing the balance of supplementing.It does seem possible from what I have read that some people who are in the early stages can reverse Hashimoto's but that involves a whole lot more work than just taking Thyroxine!
I'm sorry that your thyroid gland is destroyed, were you told that this is definitely the case? Some people reversed this somehow, I am reading so much about the success stories but this is not happening to me unfortunately. Not only medication, I've been on a very strict diet too. I now have some abnormal liver function to deal with, I'm frightened that other organs are failing too. But all these are secondary to the actual disease, ME.As far as I can see however for myself, having been ill for over 20 years with it, I will always need thyroid medication because the autoimmune attacks gradually destroy the thyroid gland itself. In that sense, yes, it's organ failure and I am guessing that my body will never function as well now simply on hormone replacement, as perhaps other organs have been damaged also along the way.
Unfortunately once you have one autoimmune condition you tend to get others so some people get very much more damaged. In my case I only seem to have acquired Lichen Planus on top and a lot of gut issues which are now heaps better after a lot of work on them. I am 65 this year though, so old age conditions are beginning to develop also - not all linked with Hashimoto's I think though.
I have just learned how to do this quotey thing. I am now so proud of myself!I believe the answer to this is the virus we contracted that started the ME had changed the immune system structure somehow. If you have anti bodies, this is not a endocrine disease primarily, It is an autoimmune disease causing endocrine failure.
Hmm. Yes, I think I see. Having an autoimmune illness and having little to help it is enough to make anyone stressed!I some how feel antibodies attacking caused the stress. It's not the other way round.
Your experience is dreadful but sadly not unique. I seem to have been one of the luckier ones as 20 years ago the GPs had more freedom to prescribe in the earlier stages, and I had a sympathetic GP who saw my TSH moving up and started treatment quite early. Thyroxine of course, which after 5 years or so ceased to work for me. Looking at alternative health people they advise going gluten free at the very least, (and often dairy free) to help stop those antibody attacks but there can be other reasons other than food. Mainstream medicine does not recognise those approaches and I only heard of this a few years ago.My early stages of Hashimoto's, I now can see was hyper thyroid. I was loosing weight, strange bowel movements, terrible palpitations. At that time I had no idea about Hashimoto's, never heard the name.
To have both of those is very grim. I am so sorry - you must be in so much pain. I seem to have been lucky enough to have stalled my LP for now. I had it on my body, but that ended and it was only in my mouth for years. Cutting things from my diet helped (gluten, sugar etc) and it was interesting that I was beginning a flare the other day when changing from T3 to NDT. Finally I had to use some hydrocortisone cream, (On advice of someone) and within 3 days the LP flare calmed down, so clearly I am very short on cortisol. have you ever had the salivary cortisol test done to check that out?I have both Lichen Planus and Lichen Sclerosis. It's awful
In the past year I have had things happen to me that are not related to ME.65 is not old age, seriously, I see my neighbour who is in her 70'ies looking after some 3 years old very lively grandson. She's running after him no problems. I see so many older people in much better health. Our health is bad not because we're old. Because we have ME, our immune system's attacking our body.