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Each hormone deficiency is associated with a distinct kind of fatigue. I had them all.

unicorn7

Senior Member
Messages
180
I feel there is not much to gain from thinking in very strict lines about ME/CFS. I don't believe when we finally figured it out, ME/CFS will be just one disease. There will also be a difference in root problem and side problems.
I have been diagnosed ME (ICC criteria), but low dose cortisol has been an enormous help. Hasn't solved it, so it's not a 100% match, but I have become way more functional.
I am also always anemic, have low b12, low T3, have SIBO etc etc.

I don't think all these problems will match with me/cfs a 100%, otherwise we would have found the solution. On the other hand, maybe by correcting some sub-problems, we might feel better and start to function a bit better. It' s not black and white.

When you look at the results of Naviaux, he did find low metabolism in ME/CFS patients. I am not surprised therefore that you will find low "everything" in ME/CFS patients and that patients might benefit from correcting those low hormones, low vitamines, low "everything". Will it solve the complete problem? I don't think so, but every % more functioning can be huge.
 

thingsvarious

Senior Member
Messages
120
I feel there is not much to gain from thinking in very strict lines about ME/CFS. I don't believe when we finally figured it out, ME/CFS will be just one disease. There will also be a difference in root problem and side problems.
I have been diagnosed ME (ICC criteria), but low dose cortisol has been an enormous help. Hasn't solved it, so it's not a 100% match, but I have become way more functional.
I am also always anemic, have low b12, low T3, have SIBO etc etc.

I don't think all these problems will match with me/cfs a 100%, otherwise we would have found the solution. On the other hand, maybe by correcting some sub-problems, we might feel better and start to function a bit better. It' s not black and white.

When you look at the results of Naviaux, he did find low metabolism in ME/CFS patients. I am not surprised therefore that you will find low "everything" in ME/CFS patients and that patients might benefit from correcting those low hormones, low vitamines, low "everything". Will it solve the complete problem? I don't think so, but every % more functioning can be huge.
Glad to hear you are feeling better. What is your dose and schedule/timing with the cortisol?

Completely agree about what you say about sub-problems and it being lack&white
 
Messages
9
I read your article and was intrigued by what you wrote concerning timings (morning, afternoon, etc) of fatigue and hormone deficiencies.

I've noticed that I frequently suffer extreme insomnia, during which my symptoms all but vanish. I can live a good life from like 2am to 5am (when I don't want to) but feel like shit whenever I need to up and about. Do you have any thoughts on how hormone timing might cause me to feel horrible all day yet alert when I should be sleeping?

I also get extreme benefit from prednisolone (almost full recovery, must be high dose - 60-80mg depending on current severity) but I am afraid to take it long term as I'm wary of the side effects and I've read that it becomes less effective quickly, so I pulse it when needed. Is this similar to the cortisol replacement you are mentioning?
 
Messages
35
I read your article and was intrigued by what you wrote concerning timings (morning, afternoon, etc) of fatigue and hormone deficiencies.

I've noticed that I frequently suffer extreme insomnia, during which my symptoms all but vanish. I can live a good life from like 2am to 5am (when I don't want to) but feel like shit whenever I need to up and about. Do you have any thoughts on how hormone timing might cause me to feel horrible all day yet alert when I should be sleeping?

I also get extreme benefit from prednisolone (almost full recovery, must be high dose - 60-80mg depending on current severity) but I am afraid to take it long term as I'm wary of the side effects and I've read that it becomes less effective quickly, so I pulse it when needed. Is this similar to the cortisol replacement you are mentioning?
you tried melatonin? glycine? lavender?
 
Messages
9
you tried melatonin? glycine? lavender?

Yes, there are many things that will help me sleep, but what interests me is that most of my symptoms disappear during these bouts of insomnia. I actually look forward to them as I can get some work done, though I crash hard the next day. I bring it up in this thread because hormone timing may be an explanation for the relief I experience
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
but what interests me is that most of my symptoms disappear during these bouts of insomnia
Abilify works on the dopamine receptors (D2), which are important for wakefulness. I recently read that when you miss sleep, your dopamine response increases.
This could be a conection between those who noticed improvements on Abilify and those who notice improvements with lack of sleep.
 
Messages
9
Abilify works on the dopamine receptors (D2), which are important for wakefulness. I recently read that when you miss sleep, your dopamine response increases.
This could be a conection between those who noticed improvements on Abilify and those who notice improvements with lack of sleep.

Ah thanks! I have been reading about abilify. Perhaps this is an indication it may help me
 

thingsvarious

Senior Member
Messages
120
I am now on my way for a thyroid prescription. Hope that it'll help. Of course Ill report back as soon as I can tell a difference
Personally, I´d make sure that my prescription for thyroid medication does include some amount of T3 as well. unfortunately, 99% of the prescriptions of thyroid hormones are for T4 only.
 
Messages
35
Personally, I´d make sure that my prescription for thyroid medication does include some amount of T3 as well. unfortunately, 99% of the prescriptions of thyroid hormones are for T4 only.
I don't fully get the point yet.. could you please explain quickly or link a relevant study on what makes T3 so relevant?
 

Avena

Senior Member
Messages
138
I don't fully get the point yet.. could you please explain quickly or link a relevant study on what makes T3 so relevant?
You’ll find a lot of anecdotes online about a combination of T4/T3 giving better sleep and less pain than T4 alone. Google Levothyroxine (synthetic T3) or Natural Thyroid (product containing both T3 and T4). Natural Thyroid products are a lot more expensive, so that might be a factor to count in.
 

thingsvarious

Senior Member
Messages
120
You’ll find a lot of anecdotes online about a combination of T4/T3 giving better sleep and less pain than T4 alone. Google Levothyroxine (synthetic T3) or Natural Thyroid (product containing both T3 and T4). Natural Thyroid products are a lot more expensive, so that might be a factor to count in.
So true. So many people report feelin much better on smething that includes T3 despite achieving the same plasma levels
 

thingsvarious

Senior Member
Messages
120
... I managed to get my hands on some T3... I hope it helps. Thanks a lot for the nudge
If I were you I would watch out for signs and symptoms of cortisol deficiency (e.g. adrenergic reactions). Many people respond quite badly to T3 when they first try it. For what I would do about it, read the respective section in the article linked above.
 
Messages
35
If I were you I would watch out for signs and symptoms of cortisol deficiency (e.g. adrenergic reactions). Many people respond quite badly to T3 when they first try it. For what I would do about it, read the respective section in the article linked above.
Thanks for the nudge. I responded very nicely to it and it add well to general T4 therapy.. if somebody already is on hypothyroid therapy they should ask their doc for T3.. other than that, I guess that most people in here test for thyroid deficiency anyways
 

pamojja

Senior Member
Messages
2,384
Location
Austria
if somebody already is on hypothyroid therapy they should ask their doc for T3.

The absurd situation for me is that my GP would be readily willing to prescribe T4, dispite freeT4 tests consitently showing too high. But not T3, which my free T3 consistently show below normal. :bang-head:
 

thingsvarious

Senior Member
Messages
120
The absurd situation for me is that my GP would be readily willing to prescribe T4, dispite freeT4 tests consitently showing too high. But not T3, which my free T3 consistently show below normal. :bang-head:
Pharm grade T3 is readily available online.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
Pharm grade T3 is readily available online.

Where from within the EU, and therefore customs not heavily fining (260,- €, up to 2600,- upon repeat), is T3 readily available?

Years ago there was a research chemical supplier in Spain, of whome's lipuid T3 I trialled. My free T3 didn't raise in any way, and therefore most propably was fake. An other I trialled was a Greek product bought in India. This too showed no effect, propably because containing too few tablets only.
 
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thingsvarious

Senior Member
Messages
120
Where from within the EU, and therefore customs not heavily fining (260,- €, up to 2600,- upon repeat), is T3 readily available?

Years ago there was a research chemical supplier in Spain, of whome's lipuid T3 I trialled. My free T3 didn't raise in any way, and therefore most propably was fake. An other I trialled was a Greek product bought in India. This too showed no effect, propably because containing too few tablets only.
You can contact me via the email provided in my articles and I can point you to a EU-source. Genuine pharma products (I hope this comment does not violate any rules if so please delete).