Chronic Illness

[BlueWidow]

Hi, I just wanted a place to post a bunch of things I found online about having a chronic illness. For those of you that don't know, I have Hashimoto's Thyroiditis, which doctors don't really see fit to treat at all. It's autoimmune, so basically my body is attacking my thyroid and causing me to be hypothyroid and the doctors won't give me enough medicine so that I can even function to a minimal level. I've also been depressed for most of my life. I also have chronic fatigue syndrome, another illness that doctors don't treat and sometimes don't even believe is real. I have pain throughout my body, though it's mostly in my feet and my hands. I'm constantly severely fatigued and no amount of sleeping or rest ever makes it go away. Anyone else with a chronic illness, whether physical or psychological, is welcome to join in. I know others here have had the "lovely" experience of being dismissed and condescended to by people in the medical and psychiatric professions.

 

[OneBigBlur]

I understand and it's part of the reason why I've given up, there aren't any cures for this stuff. I've had chronic fatigue and tinnitus my entire life which I'm almost certain are part of my many trauma symptoms. Also, Fibromyalgia for the past 4 years and there is no cure for that either plus nobody takes it seriously either since it's one of those invisible illnesses.

 

[BlueWidow]

I understand and it's part of the reason why I've given up, there aren't any cures for this stuff. I've had chronic fatigue and tinnitus my entire life which I'm almost certain are part of my many trauma symptoms. Also, Fibromyalgia for the past 4 years and there is no cure for that either plus nobody takes it seriously either since it's one of those invisible illnesses.

Yes, exactly. I have severe pain in my knees that they can't find any reason for.
I went to one doctor and he told me I had fibromyalgia. Then, he left to go to another state and got replaced with a new doctor who scoffed at the idea that fibromyalgia existed.
It's very disheartening and confusing when the doctors can't even agree on what you have or if the disease you have even exists.
I'm so sick of doctors telling me that it's all in my head or that I'm just trying to get attention. The last thing on earth that I want is attention from an f-ing doctor!

 

[OneBigBlur]

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Yes, exactly. I have severe pain in my knees that they can't find any reason for.
I went to one doctor and he told me I had fibromyalgia. Then, he left to go to another state and got replaced with a new doctor who scoffed at the idea that fibromyalgia existed.
It's very disheartening and confusing when the doctors can't even agree on what you have or if the disease you have even exists.
I'm so sick of doctors telling me that it's all in my head or that I'm just trying to get attention. The last thing on earth that I want is attention from an f-ing doctor!
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I've often just bottled up my symptoms for most of my life and tolerated them. Even when I go to the doctors I don't mention half of them because they won't be taken seriously as pretty much all of my "tests" come back as normal. I guess most of them think that people are often faking it for welfare money and the ones that need it like me don't actually get it. Yeah, let me fake all of this horrible stuff for measly amounts of money that won't even pay rent.

 

[BlueWidow]

I've often just bottled up my symptoms for most of my life and tolerated them. Even when I go to the doctors I don't mention half of them because they won't be taken seriously as pretty much all of my "tests" come back as normal. I guess most of them think that people are often faking it for welfare money and the ones that need it like me don't actually get it. Yeah, let me fake all of this horrible stuff for measly amounts of money that won't even pay rent.

Yes, I hear you. It's just ridiculous that people think anyone would fake being sick like this. For what, so you can get treated like crap by doctors and have useless expensive pills shoved at you?! It's true, it's very difficult to get disability assistance, and then even when you get it, it's barely enough to survive on, if even enough to survive on. Then, once you get it, you constantly get questioned as to whether or not you still need it. You're constantly having to jump through hoops like a trained poodle to keep proving to people that you still deserve the minuscule amounts of money you're getting.


For those of you reading this, I have tons of these little sayings to put on here. I was having a very bad day yesterday and all I could really move were my hands, so I spent most of the day lying in bed loading these things onto my phone. I don't know if you've ever been so exhausted before that you literally can't move, but if you haven't, you don't know what you're missing. Your arms and legs feel like dead thousand pound weights. Your head feels like a bowling ball.
All you can manage to do is lie there and, if you're lucky, you can move your hands so you can go on the computer. Otherwise, you just have to lie there and try to follow something on TV, which isn't always easy because of the brain fog! Oh, it's loads of fun!
I have people IRL all the time who tell me they wish they could lay around in bed all day the way I do. What they don't know is I wish they could lie around in bed all day the way I do too because maybe then they'd get an idea of what it's like and keep their smart ass opinions and advice to themselves!













Of course, They always forget the last option which is ctb. Why is that never listed as an option?! It seems like a perfectly valid option to me.

 

[Carina]

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Yes, I hear you. It's just ridiculous that people think anyone would fake being sick like this. For what, so you can get treated like crap by doctors and have useless expensive pills shoved at you?! It's true, it's very difficult to get disability assistance, and then even when you get it, it's barely enough to survive on, if even enough to survive on. Then, once you get it, you constantly get questioned as to whether or not you still need it. You're constantly having to jump through hoops like a trained poodle to keep proving to people that you still deserve the minuscule amounts of money you're getting.
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For those of you reading this, I have tons of these little sayings to put on here. I was having a very bad day yesterday and all I could really move were my hands, so I spent most of the day lying in bed loading these things onto my phone. I don't know if you've ever been so exhausted before that you literally can't move, but if you haven't, you don't know what you're missing. Your arms and legs feel like dead thousand pound weights. Your head feels like a bowling ball.
All you can manage to do is lie there and, if you're lucky, you can move your hands so you can go on the computer. Otherwise, you just have to lie there and try to follow something on TV, which isn't always easy because of the brain fog! Oh, it's loads of fun!
I have people IRL all the time who tell me they wish they could lay around in bed all day the way I do. What they don't know is I wish they could lie around in bed all day the way I do too because maybe then they'd get an idea of what it's like and keep their smart ass opinions and advice to themselves!
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Of course, They always forget the last option which is ctb. Why is that never listed as an option?! It seems like a perfectly valid option to me.
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A number of those were way too relatable. I honestly feel bad for anyone that even finds some of them relatable.

 

[BlueWidow]

I haven't had thyroid cancer, yet.
But still thought I'd add this one because I just love it that they call thyroid cancer "the good cancer". I want to know who the worthless piece of shit doctor that thought that up is!


























Again, they're forgetting option ctb.






Final 2 for now.


Thanks everyone!

 

[BlueWidow]

 

[Fragile]

this is honestly my main reason. i have a connective tissue disorder that affects every single part of my body to different degrees and there is no cure, no effective treatment and doctors are not even going to diagnose me because they don't think it's worth their time, they just tell me that i have symptoms of many rare diseases but there is no point in knowing which is the one that i have, just take some cheap painkillers and go home.

healthcare absolutely sucks in my country, people just die because the privatized health companies care only about money so getting a diagnosis for anything that can be considered chronic means that they'll have to do their job and pay for your treatments, and that can't happen because it will be too expensive on their side.

my hearth goes out to anyone struggling with chronic illnesses and suffering because the lack of care from people in the medical field, i know how hard it is to want to recover or at least get some quality of life but only getting dismissed or called a hypochondriac in the process.

 

[BlueWidow]

this is honestly my main reason. i have a connective tissue disorder that affects every single part of my body to different degrees and there is no cure, no effective treatment and doctors are not even going to diagnose me because they don't think it's worth their time, they just tell me that i have symptoms of many rare diseases but there is no point in knowing which is the one that i have, just take some cheap painkillers and go home.

healthcare absolutely sucks in my country, people just die because the privatized health companies care only about money so getting a diagnosis for anything that can be considered chronic means that they'll have to do their job and pay for your treatments, and that can't happen because it will be too expensive on their side.

my hearth goes out to anyone struggling with chronic illnesses and suffering because the lack of care from people in the medical field, i know how hard it is to want to recover or at least get some quality of life but only getting dismissed or called a hypochondriac in the process.

I'm so sorry to hear about your experiences, @Fragile. Although in many ways it helps to hear that other people are having similar experiences to mine, it also makes me sad that other people have to go through all the same horrible stuff that I've had to go through. I certainly wouldn't wish it on anyone. Sometimes I try to imagine what my last doctor will say when he finds out that I ctb. I'm sure he'll lament the wasted opportunities he gave me to get help for myself and claim there's nothing more he could've done. All of which is bullshit. Each and every doctor I've ever seen in my life has played a tiny bit in my ctb. If this were a fair world, they would all be brought up on charges the minute I died!

 

[Mort]

I sort of know a little what you going through i have arthritis in most of my joints. My back is falling at the very bottom my disc it all most gone it bone on bone now . And it slowly destroying the nerves that come out at that point so have permanent pins and needles in my toes when it gets bad i can lose all feeling in my feet. One day i am going to end up in a wheelchair pissing and shitting myself o joy of joys. Any way i be dead befor that happens i going to make shore of it sod what any one else thinks. Any all my hugs to you wishing you well as you can be HUUUUUUGGGGGGSSSSSSSS :D

 

[BlueWidow]

I sort of know a little what you going through i have arthritis in most of my joints. My back is falling at the very bottom my disc it all most gone it bone on bone now . And it slowly destroying the nerves that come out at that point so have permanent pins and needles in my toes when it gets bad i can lose all feeling in my feet. One day i am going to end up in a wheelchair pissing and shitting myself o joy of joys. Any way i be dead befor that happens i going to make shore of it sod what any one else thinks. Any all my hugs to you wishing you well as you can be HUUUUUUGGGGGGSSSSSSSS :D

Hello,
thanks for responding. I know that pins and needles feeling. I have it in my feet a lot, as well as the pain throughout my feet that feels like I'm being stabbed with a knife. I'm not sure exactly what it is, but I worry that it's the beginnings of diabetes because that runs in my family. I won't go to a doctor for it because they'd just tell me to lose weight, which I can't do because of my undertreated thyroid, which the doctors won't treat properly. So once again, I have illnesses that could be treated if the doctors would only do so, but they refuse. They'd much prefer that I just remain barely functional.
I can't imagine the pain you must be in. I know nerve pain is horrible. It's so frustrating to me that so many people have to suffer such horrible fates, and the longer I live the more I'm beginning to think that it's all for nothing.

 

[Cleopatra123]

I've often just bottled up my symptoms for most of my life and tolerated them. Even when I go to the doctors I don't mention half of them because they won't be taken seriously as pretty much all of my "tests" come back as normal. I guess most of them think that people are often faking it for welfare money and the ones that need it like me don't actually get it. Yeah, let me fake all of this horrible stuff for measly amounts of money that won't even pay rent.

I've had CFS (Chronic Fatigue Syndrome) for 40 years. Infectiously oriented. Everything you say about doctors is absolutely correct and a horror. Sometimes we are so miserable we can't go; and why go anyway, NO ANSWERS, NO RESPECT, outright DENIAL. having been a nurse I was good at alternative natural remedies which eased my discomfort and allowed me to work PT, and function somewhat; but 6 years ago after my second 10 hour open heart surgery; I developed Myalgic Encephalitis, a common occurrence in CFS; that was really the end of life and anything meaningful, and, family I cared for all those years, have the same attitude as doctors. Children I loved and gave of my resources and energy, still use me, but give no assistance. Now, not only do I have Zero energy for anthing, but have to fight Kidney disease, inflammatory disease, eating disorders, I could do on and on. I'm done, I'm fried. I'm exhausted with no reason to be here at all. I understand. If anyone is suffering from the complications of fatiguing disorders, neurological, gastric, kidney symptoms; I know of remedies that can help remit these, i may be of some help. But, I am ready ready ready for a peaceful end.

 

[Backwood_tilt]

I've had CFS (Chronic Fatigue Syndrome) for 40 years. Infectiously oriented. Everything you say about doctors is absolutely correct and a horror. Sometimes we are so miserable we can't go; and why go anyway, NO ANSWERS, NO RESPECT, outright DENIAL. having been a nurse I was good at alternative natural remedies which eased my discomfort and allowed me to work PT, and function somewhat; but 6 years ago after my second 10 hour open heart surgery; I developed Myalgic Encephalitis, a common occurrence in CFS; that was really the end of life and anything meaningful, and, family I cared for all those years, have the same attitude as doctors. Children I loved and gave of my resources and energy, still use me, but give no assistance. Now, not only do I have Zero energy for anthing, but have to fight Kidney disease, inflammatory disease, eating disorders, I could do on and on. I'm done, I'm fried. I'm exhausted with no reason to be here at all. I understand. If anyone is suffering from the complications of fatiguing disorders, neurological, gastric, kidney symptoms; I know of remedies that can help remit these, i may be of some help. But, I am ready ready ready for a peaceful end.

I've only been here for a few weeks but including myself, you're the sixth person i've seen on here with CFS/ME/Fibro/Lyme's.

Can't think of another population that deserves a peaceful end more than we do.

 

[Cleopatra123]

I've only been here for a few weeks but including myself, you're the sixth person i've seen on here with CFS/ME/Fibro/Lyme's.

Can't think of another population that deserves a peaceful end more than we do.

There may be some others, but absolutely for these; and, the longer one lives through it like I did using natural remedies as there is no cure, the slower and worse the disease gets; affecting all different organs one by one. Wouldn't it be cool if we could all get together; have a happy peaceful goodbye; and leave a note as to the torture we endured for so many years. If any of my research can be of help give me a head's up. Best wishes.

 

[Backwood_tilt]

the longer one lives through it like I did using natural remedies as there is no cure, the slower and worse the disease gets; affecting all different organs one by one.

So terrified of this. Chronic illness is its own hell.

I think there is some CFS memorial online that helps assemble at least some statistics on CFS patients who have passed. Do you think you would want an obit there when you pass?

 

[Cleopatra123]

Hello,
thanks for responding. I know that pins and needles feeling. I have it in my feet a lot, as well as the pain throughout my feet that feels like I'm being stabbed with a knife. I'm not sure exactly what it is, but I worry that it's the beginnings of diabetes because that runs in my family. I won't go to a doctor for it because they'd just tell me to lose weight, which I can't do because of my undertreated thyroid, which the doctors won't treat properly. So once again, I have illnesses that could be treated if the doctors would only do so, but they refuse. They'd much prefer that I just remain barely functional.
I can't imagine the pain you must be in. I know nerve pain is horrible. It's so frustrating to me that so many people have to suffer such horrible fates, and the longer I live the more I'm beginning to think that it's all for nothing.

I'm so sorry to hear about your experiences, @Fragile. Although in many ways it helps to hear that other people are having similar experiences to mine, it also makes me sad that other people have to go through all the same horrible stuff that I've had to go through. I certainly wouldn't wish it on anyone. Sometimes I try to imagine what my last doctor will say when he finds out that I ctb. I'm sure he'll lament the wasted opportunities he gave me to get help for myself and claim there's nothing more he could've done. All of which is bullshit. Each and every doctor I've ever seen in my life has played a tiny bit in my ctb. If this were a fair world, they would all be brought up on charges the minute I died!

So terrified of this. Chronic illness is its own hell.

I think there is some CFS memorial online that helps assemble at least some statistics on CFS patients who have passed. Do you think you would want an obit there when you pass?

obit's are a good idea, but there isn't there enough interest in hospitals nor finances. The general aod they say is 55 years old; but that is dependent on so many issues; which organs are affected; at what age, etc, and the prevalence of cancer and suicide at high rates.

Hello,
thanks for responding. I know that pins and needles feeling. I have it in my feet a lot, as well as the pain throughout my feet that feels like I'm being stabbed with a knife. I'm not sure exactly what it is, but I worry that it's the beginnings of diabetes because that runs in my family. I won't go to a doctor for it because they'd just tell me to lose weight, which I can't do because of my undertreated thyroid, which the doctors won't treat properly. So once again, I have illnesses that could be treated if the doctors would only do so, but they refuse. They'd much prefer that I just remain barely functional.
I can't imagine the pain you must be in. I know nerve pain is horrible. It's so frustrating to me that so many people have to suffer such horrible fates, and the longer I live the more I'm beginning to think that it's all for nothing.

Pins and needles in the feet and hands are know as peripheral neuropathy and is based in a combination of circulatory and neurological dysfunctions. My hands get red and blue and don't heal easily and the fingertips ache; known as Raynaud's syndrome; another common add along to the fatiguing (chronic fatigue syndrom's) which I treat with homeopathic formulas.

 

[Jumper]

People don't realize that there are many diseases that have not yet been identified, and there are no diagnostic tests for them. We like to think that we're on the cutting edge of technology, but we're not. So many people just receive inaccurate labels for their terrible symptoms... Chronic Lyme, CFS, Fibromyalgia, "functional" (all in your head), etc. But really, the medical professionals don't have the answers because we're still in the dark ages. An example of this is anti-NMDA receptor encephalitis, which was only identified in 2007. Prior to this, people with this illness were given a psych diagnosis (schizophrenia, bipolar), or just died of a mysterious unidentified disease. I'll bet the incidence of "less" serious unidentified disease is very high. As for me, I have been diagnosed with CRPS.

 

[Reallyreallyreally]

I had every single symptom of CFS and I went through years of being told I was fine, told to see a psychiatrist, told to sleep more, etc. The only thing that made a damn bit of difference was when I went "clean keto" for hormonal reasons and every single symptom was gone in a few weeks. Dead serious. Completely gone.

There are so many people online who've had to trial and error their way through because they're not listened to and most doctors have no idea what keto is. I had one douchebag doctor roll his eyes and tell me there was no such thing as a dietary treatment but that if I felt it helped me then good for me, and that I needed to see a psychiatrist. I had other symptoms that were visible from the outside and he still took this approach.

In my experience healthcare for this kind of thing is better provided by nurse practitioners, especially female. They tend to take a more holistic approach. I wrote a post about somewhere else here.

That aside, a functional medicine doctor may actually be able to help you. They take a much deeper look at things. Have your doctors done a full thyroid panel? I don't know the ins and outs of it but there's a process by which your body takes one thyroid hormone and converts it into another and then does something else with it. From what I understand, a primary care physician will only test that the first one is being produced, not whether it's converted into the other one and then that one converted to whatever, and so even when they do give thyroid hormone they'll just give you more of the beginning one.

I hope you can find some relief. I think it's really fucked up that so many people are so ill in this way. If they would get off their high horses and listen to their patients there wouldn't be so many people having to find DIY ways to address their illness. How many people have died either from this condition directly or by their own hand because left untreated it was too much for too long and they just couldn't anymore? This is why I yell my own solution from the hilltops. I know people don't like it but if it can help at least someone then I don't care.

 

[Cleopatra123]

So terrified of this. Chronic illness is its own hell.

I think there is some CFS memorial online that helps assemble at least some statistics on CFS patients who have passed. Do you think you would want an obit there when you pass?

I've lots of evidence, I could give an earful about medical neglect, outright apathy; yes, I would like to do anything I could to help others. But I haven't passed yet, lol, shucks!

 

[clandestine]

@Reallyreallyreally out of curiosity did all the symptoms stay in remission from the keto diet? Or did you crash after a while?

 

[Cleopatra123]

People don't realize that there are many diseases that have not yet been identified, and there are no diagnostic tests for them. We like to think that we're on the cutting edge of technology, but we're not. So many people just receive inaccurate labels for their terrible symptoms... Chronic Lyme, CFS, Fibromyalgia, "functional" (all in your head), etc. But really, the medical professionals don't have the answers because we're still in the dark ages. An example of this is anti-NMDA receptor encephalitis, which was only identified in 2007. Prior to this, people with this illness were given a psych diagnosis (schizophrenia, bipolar), or just died of a mysterious unidentified disease. I'll bet the incidence of "less" serious unidentified disease is very high. As for me, I have been diagnosed with CRPS.

Myalgic Encephalitis was associated with all of those chronic diseases around that time. Is there an accurate test for anti-NMDA receptor encephalitis that you know of; a quick look didn't reveal these. These strange and very potent infectious elements are growing more prevalent in our degenerating ecology. There is an infection called mycoplasma, which was first discovered in the 1970's, first it didn't exist, then it could be killed with antibiotics; till research with IV antibiotics for 2 years did not kill it, and, for the people who were treated and did recover from one of the 29 strains, often became reinfected later. It speaks to the human immune system to be overcome by the amount of virulent diseases, the gut is dysfunctional because of imbalance, the immune system won't work, then the brain gets encephalitis and then one is FRIED! Liable then to Kidney dysfunction, difficulty eating, degeneration of ocular functioning, pins and needles, and poor peripheral circulation; arthritis diseases, ANYTHING or everything. The suicide rate of these group of illnesses is 5 times the world average.

 

[Reallyreallyreally]

obit's are a good idea, but there isn't there enough interest in hospitals nor finances. The general aod they say is 55 years old; but that is dependent on so many issues; which organs are affected; at what age, etc, and the prevalence of cancer and suicide at high rates.

Pins and needles in the feet and hands are know as peripheral neuropathy and is based in a combination of circulatory and neurological dysfunctions. My hands get red and blue and don't heal easily and the fingertips ache; known as Raynaud's syndrome; another common add along to the fatiguing (chronic fatigue syndrom's) which I treat with homeopathic formulas.

Ugh, the pins and needles. Numb pinky toes.

@Reallyreallyreally out of curiosity did all the symptoms stay in remission from the keto diet? Or did you crash after a while?

Yes, they stayed gone as long as I tracked my macros, ate only simple ingredients that I cooked myself, kept up on my electrolytes, kept my fat intake high, and hydrated properly. One thing I did very right was ignore the people who say you have to restrict your calories. I recommend avoiding sweeteners.

Facebook has a group called Keto4Neuro that had some really good people last time I was there. If you want to do keto it's really helpful to find a supportive, nonjudgmental group to consult with. It can be hard to find a good one but I think CFS falls into the neuro category so I would give this group a try.

 

[Jumper]

Myalgic Encephalitis was associated with all of those chronic diseases around that time. Is there an accurate test for anti-NMDA receptor encephalitis that you know of; a quick look didn't reveal these. These strange and very potent infectious elements are growing more prevalent in our degenerating ecology. There is an infection called mycoplasma, which was first discovered in the 1970's, first it didn't exist, then it could be killed with antibiotics; till research with IV antibiotics for 2 years did not kill it, and, for the people who were treated and did recover from one of the 29 strains, often became reinfected later. It speaks to the human immune system to be overcome by the amount of virulent diseases, the gut is dysfunctional because of imbalance, the immune system won't work, then the brain gets encephalitis and then one is FRIED! Liable then to Kidney dysfunction, difficulty eating, degeneration of ocular functioning, pins and needles, and poor peripheral circulation; arthritis diseases, ANYTHING or everything. The suicide rate of these group of illnesses is 5 times the world average.

The anti-NMDA receptor autoantibody was discovered in 2007. It can be tested for in blood and cerebrospinal fluid. There are other diseases where antibodies were recently discovered (neuromyelitis optica, for instance... antibody discovered in 2004... but you can see abnormalities on MRI for this disease).

 

[clandestine]

Yes, they stayed gone as long as I tracked my macros, ate only simple ingredients that I cooked myself, kept up on my electrolytes, kept my fat intake high, and hydrated properly. One thing I did very right was ignore the people who say you have to restrict your calories. I recommend avoiding sweeteners.

Facebook has a group called Keto4Neuro that had some really good people last time I was there. If you want to do keto it's really helpful to find a supportive, nonjudgmental group to consult with. It can be hard to find a good one but I think CFS falls into the neuro category so I would give this group a try.

Thanks (: that's interesting. What were your macro percentages like? And high fat, what kinds were you eating, saturated/unsaturated/mono?

 

[BlueWidow]

That aside, a functional medicine doctor may actually be able to help you. They take a much deeper look at things. Have your doctors done a full thyroid panel? I don't know the ins and outs of it but there's a process by which your body takes one thyroid hormone and converts it into another and then does something else with it. From what I understand, a primary care physician will only test that the first one is being produced, not whether it's converted into the other one and then that one converted to whatever, and so even when they do give thyroid hormone they'll just give you more of the beginning one.

Recommended Labwork - Stop The Thyroid Madness

Learn which labs are critical for hypothyroid or Hashimoto's patients, plus where you can order your own.

stopthethyroidmadness.com

Here is a link to the "Stop The Thyroid Madness" website and some of the lab work they recommend. You are correct that most doctors only do the TSH, thyroid stimulating hormone, test which is 100% useless. I have been to every type of doctor there is practically. I don't know that any of them were technically called a functional medicine doctor, but I've been to all kinds of alternative medical doctors, none of which accept insurance, and I don't have anymore money to waste on any doctors of any kind. However, I encourage anyone else to seek out non-conventional medical doctors who will treat you in ways other than what is normally taught in medical school, particularly if you have a thyroid problem or a problem that isn't accepted and recognized by conventional medical doctors. They are all trained at the same schools and in the same techniques, and they are all taught the same attitudes toward their patients. Most conventional doctors don't like patients who come into their offices with knowledge either. They don't like it when you bring up treatments and things. They want to be the one to tell you what's wrong with you and what treatment you should get. If you go into a doctor's office and tell them what you have and what treatment you want, they don't accept it very well, at least not in my experience. They like to feel superior to their patients and like they know everything and the patient knows nothing, even though the patient is the one living with the disease day in and day out.

In my own particular case, at this point, it wouldn't matter if my thyroid and my depression problems cleared up tomorrow, because without my husband— my life has no meaning anyway.

But I do encourage anyone else that would like to seek help to do so. If you do have thyroid problems, this website, stop the thyroid madness, is an excellent place to start. They also have recommendations on there for ways in which you can get your own lab tests done yourself, and they go on to discuss common lab testing facilities, such as Quest, and why the testing they do is not accurate. It's too bad they don't allow you to just obtain your own meds as well. If I could treat my own thyroid problem, I could probably do a hell of a lot better than some doctor that doesn't know what the hell he's doing and only wants to keep me on enough medicine that I'm barely functioning. I've got 25 years worth of knowledge living with this and I bet anyone $1 million that I know more about it than any doctor on earth does no matter how many degrees he has in endocrinology or thyroid function!

Extreme Love & Hugs to you all!

 

[Reallyreallyreally]

Thanks (: that's interesting. What were your macro percentages like? And high fat, what kinds were you eating, saturated/unsaturated/mono?

To make sure my macros are on, I like CarbManager. I use the free version. There are some macro calculators online. I'm going to drop some links and recommend some YouTube channels and Facebook recipe groups. You'll get a much better explanation than I can give you in a comment thread.

A couple guides:

The Ketogenic Diet: A Detailed Beginner's Guide to Keto

The ketogenic diet (keto) is a low carb, high fat diet that causes weight loss and provides numerous health benefits. This is a detailed beginner's guide.

www.healthline.com

A Keto Diet for Beginners: The #1 Ketogenic Guide - Diet Doctor

A keto diet is a very low carb, high fat diet. Get started on keto with delicious recipes, amazing meal plans, health advice, and inspiring videos to help you succeed.

www.dietdoctor.com

YouTube:

Dr Boz (Dr Annette Bosworth. She teaches the science of it)

Dr Berg (more science)

Keto Connect (fun to watch and great recipes but avoid the desserts)

Butter Bob Butter Makes Your Pants Fall Off (not specifically keto but he presents things in a simple, accessible way.)


For Facebook groups, I have my account deactivated so I can't go look without restarting it, but the thing really is to look for groups that don't have a hostile, cult like vibe. A lot of them are weight loss focused and very controlling about numbers using formulas that don't equate. The second you pick up any hostility, just get out. It can be a mine field. I think the one I like is called Ketogenic Success, but there is more than one by that name. Keto4Neuro and Keto for PCOS are great, assuming you're female for the second one. Lots of keto recipe groups.

I don't know if I covered everything but these will give you a good start.

Thanks (: that's interesting. What were your macro percentages like? And high fat, what kinds were you eating, saturated/unsaturated/mono?

And to answer your actual question, mostly saturated fat from meat, dairy, nuts. Coconut doesn't agree with me but for most folks it's great. Olive and avocado oils are great.

But I wouldn't just start heaping day on your plate without doing research on how keto works. It's not good to just add to a standard diet without recalibration across the board. Also I'm not a health professional so take that into consideration with all of this.

 

[Jon86]

Chronic illness is why i'm here too. Mostly skin issues, rosacea skin and ocular, folliculitis and also fatigue/ibs.

I've actually done the keto diet, numerous times over the past decade, it helps with weight loss big time, although I never needed that. I find keto and even moreso carnivore helps with skin a fair bit. The problem is that it's very difficult to maintain dieting like that in my experience, especially if you work a labor intensive job, it's just hard to stomach so much fat or protein ie. over 3000kcals/day. Worth a shot though. It's also $$$, relatively boring and difficult socially. I'm going to try a moderately low carb, dairy free diet next with around 150 grams of carbs per day. I've been on diets basically continuously for the past decade trying to find the answer, I thought I found it many times, I was wrong....fuck

 

[Reallyreallyreally]

Chronic illness is why i'm here too. Mostly skin issues, rosacea skin and ocular, folliculitis and also fatigue/ibs.

I've actually done the keto diet, numerous times over the past decade, it helps with weight loss big time, although I never needed that. I find keto and even moreso carnivore helps with skin a fair bit. The problem is that it's very difficult to maintain dieting like that in my experience, especially if you work a labor intensive job, it's just hard to stomach so much fat or protein ie. over 3000kcals/day. Worth a shot though. It's also $$$, relatively boring and difficult socially. I'm going to try a moderately low carb, dairy free diet next with around 150 grams of carbs per day. I've been on diets basically continuously for the past decade trying to find the answer, I thought I found it many times, I was wrong....fuck

I wish I could look at a log of your eating patterns at the time. It ounds like something was off for you, maybe not enough veg or protein. Athletes and laborers have higher nutrition needs than other people. Yes it's good for weight and skin but that was never why I did it. I ate extra fat to make sure I didn't burn too much of my own. Right now I need to resume because I think I won't need to be on this forum if I can get it back together.

 

[Cleopatra123]

The anti-NMDA receptor autoantibody was discovered in 2007. It can be tested for in blood and cerebrospinal fluid. There are other diseases where antibodies were recently discovered (neuromyelitis optica, for instance... antibody discovered in 2004... but you can see abnormalities on MRI for this disease).

One would wonder why those diagnosed with psychiatric disorders; are not tested for this, but it's no surprise really, the profits for antipsychotics make more money.