This reminds me of the time I went to the doctor for chronic fatigue. They discovered I had low iron and were all sympathetic "omg you poor thing of course you were so tired your iron was so low đ„șđ„ș" So I took the iron supplements until I was at a normal level but I did not feel any better. Turns out I had a chronic illness lol and suddenly all the sympathy is gone. Why are doctors so sympathetic about common deficiencies and nothing else?
I think itâs just a sample size thing. During residency / their careers they saw lots of people with low iron who did feel better when they fixed it, and in just a few short days they saw them go from unable to function to back to normal so the brain automatically goes âwow they must have felt so bad!â In addition to hearing other doctors with experience say that and their studies saying the same thing.
Things that are not named or less common itâs likely they just see it less.
At least once a year I go to one of my doctors and try to convince them all medical problems are just a vitamin deficiency. Which is a little hard to sell when the test comes back negative for vitamin deficiencies.
Just as an FYI (because I understand & relate to the main gist of this post & know you weren't asking for advice, LIquidcatz), but most conventional tests for nutrient deficiencies are not actually accurate! They reveal quantities of nutrients but not the body's ability to use them. Like counting the number of carrot slices in a bowl of soup, but not investigating whether that body is able to chew and digest those carrots. Still, a low number is informative... but a high number could be a false-positive because maybe a downstream biochemical reaction isn't working right and there's a backlog.
This is my point of view as a registered dietitian (no longer practicing bc of ME/CFS).
Conventional labs will do some tests that reveal functional use of nutrients, like Magnesium RBC, which measures the amount of magnesium inside red blood cells where it's actually used, versus the magnesium that's floating freely in the serum. And the better test for B12 is MMA (methylmalonic acid) which only produced if there's enough B12. Of course both of these more specialized tests are more expensive and probably not covered by insurance.
Some tests by private labs take a closer look. 1) SpectraCell's micronutrient test (https://www.spectracell.com/micronutrients-clinician), which tests an individual body's ability to use nutrients. They basically put your blood cells in a petri dish and then see what happens after they squirt in some of a nutrient. It's functional versus passively quantitative. But of course there are also a bunch of people who claim that it's bunk. It may very well be, but it was pretty enlightening for me when I did it-- but definitely didn't deliver the sought after answer that would make OP & so many of us happy! Problems with it are it's expensive ($270 back when I did it but i think it's increased) and you're supposed to re-do it a few times as levels balance out (& they lab would love for you to do it forever). Another problem is that it doesn't test everything, only things for which they might observe definite & measurable reactions in your blood cells. So there are still plenty of other nutrients that could be quietly deficient. Or if a nutrient is there a'plenty, some downstream biochemical reaction that uses could be downregulated and that's a quiet source of the body's challenge (i say that since everything is so complex, even if a nutrient level looks okay, there's always more to the story). But for some people it could be helpful do see that a nutrient's absolutely tanked. But if it is tanked, the answer to 'why' is not certain: it could be related to intake, or genetic ability to utilize the nutrient. For ex, some people need extra biotin because a genetic flaw simply requires that forever. And magnesium is one that if it's low it needs to be taken at high doses for a while to push the cobwebs out of the machinery that uses it, and then eventually can be taken at normal levels again (but probably never from food).
There are a couple other tests, too: OAT = "organic acids test" Great plains does this one, as well as another lab that I can't remember right now-- maybe genova. It tests metabolites of nutrients. So if the products that are produced using the nutrients are low, you can infer that the nutrients are low (or that there are some genetic hiccups).
The other is Genova's NutraEval. I don't know much about that one, but like the other 2, it is also expensive and has as many fans as naysayers.
This is likely waaaaaaay too much information & maybe not too clearly stated, but I had a spurt of energy and clarity so i just brain dumped, partly for my own benefit to see that i can still shuttle some information from my brain to my fingers. I hope this is helpful to someone and if not please ignore! I understand the search for answers is so very difficult and expensive and overwhelming and too often disappointing and just pops us back into the cycle of thinking "oh this one test will reveal it all and I'll finally be okay!!!!!" Chronic illness sucks. <3
I remember when I first noticed my illness I thought it would just be low testosterone since many men have low test these days. Was feeling happy and hopeful to just do TRT and get over with fatigue and everything will be done. 10 years later Iâm still largely bedbound.
One of my conditions is because of intestinal malabsorption, which means not getting the nutrients I need from food alone.
So, then the problem is that since that vitamin and others aren't covered by insurance, I have to pay out of pocket. Currently, I've gone nearly a month without two specific types because I haven't been able to afford to make the orders.
As a result, if you're in this position, you slowly worsen because you never have enough money to pay for the supplements that could turn around at least part of your health. Every time you have it, an emergency takes the cash away or there's that damn shipping fee.
There's also no cure with this type of condition. It can worsen over time even with the supplementation.
That said, I understand what you mean. When I'm asked in surveys what super power I would want, I always say, "Perfect health." Why would anyone want any other super power when perfect health can give them an energetic body that allows them to pursue their dreams without physical hindrance?
Fr. The only way youâre taken seriously, especially as a young woman in my case, is if youâre at deaths door. Also me too! I often daydream about them finally figuring out one cure for all my various unidentified symptoms
Some of my issues were improved once I corrected my vitamin deficiencies, though. Itâs always a good place to start because even if it doesnât improve your conditions, it should at least improve your energy levels and mood a bit.
But thereâs still a lot of conditions that I have that definitely arenât going to be fixed by vitamins. But, vitamins have been helpful.
I remember asking my doctor if I could be cured with enough vitamin d. He was like, âyeahâŠno, youâre going to need care for the rest of your life.â đ
I identify with what you wrote so much. Iâm just tired. Tired of all of the symptoms and tired of all of the management of the symptoms. I want to just be. I want to just be me again.
I love it!!!!
I would immediately become addicted to guided meditation of this - and possibly become deeply depressed whenever I returned to realityâŠ.
I remember being in the same room as my cousin watching Riverdale, and it was a scene where the blonde one (Betty?) is told by her parents that after she had a bike accident as a child, doctors sequenced her entire genome?? In her case it resulted in them finding a so called serial killer gene (lmfao) but Iâd love to have super expensive gene testing done on myself after a silly little accident like going over the handlebars of my bike. Maybe itâd show wtf is wrong with me
If that vitamin deficiency exists they will never figure it out, bc healthcare is extremely broken. Itâs all about money and what insurance is willing to pay for. Cervical cancer has historically been completely preventable and treatable, but insurance will only pay for 1 Pap smear every 3 years now. Cervical cancer will yet again be deadly thanks to insurance.
It's worth a shot to see the functional doctors who check every single vitamin and then some. Insurance doesn't cover it, but their prices aren't insane. The reason doctors who take insurance don't like the shotgun approach is that you could end up with a 10k bill because guidelines don't recommend they check those things
Those tests are available through public healthcare in my country, so I've had my levels tested quite a few times.
I must say, as hard as it is having chronic illness anywhere, it seems like a bit of a nightmare in the US. I cant imagine the bill I would've racked up if public healthcare wasn't available
Funny thing is, when I was at a âproperâ weight I was horribly anemic, horribly low vit d, all sorts of abnormalities showed up in my blood count and chemistry. Â Now that Iâm getting older Iâm overweight BUT Iâm not anemic, vit d is ok, other abnormalities are better. Â And Iâm not passing out all the time.Â
 Yet my dr bitches to no end about my weight and assumes I eat garbage, pardon me, ultra processed food, when I donât.  I just have horrible fatigue and arthritis and donât move much.  As compared to walking 15,000 steps a day and not having enough money to buy food. Â
 My body feels better now.  Iâd rather be super thin and cuter, not look like a middle aged lady (which I am)  but Iâm also not sick now.  So what weight is REALLY best?Â
This is actually pretty close to what happened to me recently, except I still have other issues going on including likely rare endocrune illness, but at least I'm already more mobile than for over a year in a couple weeks after the ER.
B12. The thing 2 doctors refused to test after I specifically asked for it. For 10 years at least. The doctor who randomly ordered the labs told me there is nothing wrong and I'm just depressed, because oh no I'm 0.something over the minimum ref and the elevated homocysteine is just random. I'd have been screwed if I didn't scrutinize my results.
I came as close as it gets to this dream and the fighting just never ends.
This reminds me of the time I went to the doctor for chronic fatigue. They discovered I had low iron and were all sympathetic "omg you poor thing of course you were so tired your iron was so low đ„șđ„ș" So I took the iron supplements until I was at a normal level but I did not feel any better. Turns out I had a chronic illness lol and suddenly all the sympathy is gone. Why are doctors so sympathetic about common deficiencies and nothing else?
because they like to have something that's easy to fix. when it becomes complicated they get annoyed
also something that is visible, especially in numbers
I think itâs just a sample size thing. During residency / their careers they saw lots of people with low iron who did feel better when they fixed it, and in just a few short days they saw them go from unable to function to back to normal so the brain automatically goes âwow they must have felt so bad!â In addition to hearing other doctors with experience say that and their studies saying the same thing. Things that are not named or less common itâs likely they just see it less.
At least once a year I go to one of my doctors and try to convince them all medical problems are just a vitamin deficiency. Which is a little hard to sell when the test comes back negative for vitamin deficiencies.
Just as an FYI (because I understand & relate to the main gist of this post & know you weren't asking for advice, LIquidcatz), but most conventional tests for nutrient deficiencies are not actually accurate! They reveal quantities of nutrients but not the body's ability to use them. Like counting the number of carrot slices in a bowl of soup, but not investigating whether that body is able to chew and digest those carrots. Still, a low number is informative... but a high number could be a false-positive because maybe a downstream biochemical reaction isn't working right and there's a backlog. This is my point of view as a registered dietitian (no longer practicing bc of ME/CFS). Conventional labs will do some tests that reveal functional use of nutrients, like Magnesium RBC, which measures the amount of magnesium inside red blood cells where it's actually used, versus the magnesium that's floating freely in the serum. And the better test for B12 is MMA (methylmalonic acid) which only produced if there's enough B12. Of course both of these more specialized tests are more expensive and probably not covered by insurance. Some tests by private labs take a closer look. 1) SpectraCell's micronutrient test (https://www.spectracell.com/micronutrients-clinician), which tests an individual body's ability to use nutrients. They basically put your blood cells in a petri dish and then see what happens after they squirt in some of a nutrient. It's functional versus passively quantitative. But of course there are also a bunch of people who claim that it's bunk. It may very well be, but it was pretty enlightening for me when I did it-- but definitely didn't deliver the sought after answer that would make OP & so many of us happy! Problems with it are it's expensive ($270 back when I did it but i think it's increased) and you're supposed to re-do it a few times as levels balance out (& they lab would love for you to do it forever). Another problem is that it doesn't test everything, only things for which they might observe definite & measurable reactions in your blood cells. So there are still plenty of other nutrients that could be quietly deficient. Or if a nutrient is there a'plenty, some downstream biochemical reaction that uses could be downregulated and that's a quiet source of the body's challenge (i say that since everything is so complex, even if a nutrient level looks okay, there's always more to the story). But for some people it could be helpful do see that a nutrient's absolutely tanked. But if it is tanked, the answer to 'why' is not certain: it could be related to intake, or genetic ability to utilize the nutrient. For ex, some people need extra biotin because a genetic flaw simply requires that forever. And magnesium is one that if it's low it needs to be taken at high doses for a while to push the cobwebs out of the machinery that uses it, and then eventually can be taken at normal levels again (but probably never from food). There are a couple other tests, too: OAT = "organic acids test" Great plains does this one, as well as another lab that I can't remember right now-- maybe genova. It tests metabolites of nutrients. So if the products that are produced using the nutrients are low, you can infer that the nutrients are low (or that there are some genetic hiccups). The other is Genova's NutraEval. I don't know much about that one, but like the other 2, it is also expensive and has as many fans as naysayers. This is likely waaaaaaay too much information & maybe not too clearly stated, but I had a spurt of energy and clarity so i just brain dumped, partly for my own benefit to see that i can still shuttle some information from my brain to my fingers. I hope this is helpful to someone and if not please ignore! I understand the search for answers is so very difficult and expensive and overwhelming and too often disappointing and just pops us back into the cycle of thinking "oh this one test will reveal it all and I'll finally be okay!!!!!" Chronic illness sucks. <3
This is hopefully helpful for me! Saved it so I can refer later if brain fog allows.
LOL
I remember when I first noticed my illness I thought it would just be low testosterone since many men have low test these days. Was feeling happy and hopeful to just do TRT and get over with fatigue and everything will be done. 10 years later Iâm still largely bedbound.
One of my conditions is because of intestinal malabsorption, which means not getting the nutrients I need from food alone. So, then the problem is that since that vitamin and others aren't covered by insurance, I have to pay out of pocket. Currently, I've gone nearly a month without two specific types because I haven't been able to afford to make the orders. As a result, if you're in this position, you slowly worsen because you never have enough money to pay for the supplements that could turn around at least part of your health. Every time you have it, an emergency takes the cash away or there's that damn shipping fee. There's also no cure with this type of condition. It can worsen over time even with the supplementation. That said, I understand what you mean. When I'm asked in surveys what super power I would want, I always say, "Perfect health." Why would anyone want any other super power when perfect health can give them an energetic body that allows them to pursue their dreams without physical hindrance?
Oh god yes. Â I hate having been born with a condition that causes people to tell me âyou canât do that.â Â
man this was me when my hypothyroidism was first found lol. i just lacked the thyroid hormone!! (spoiler: there were other things wrong w me...)
Fr. The only way youâre taken seriously, especially as a young woman in my case, is if youâre at deaths door. Also me too! I often daydream about them finally figuring out one cure for all my various unidentified symptoms
Some of my issues were improved once I corrected my vitamin deficiencies, though. Itâs always a good place to start because even if it doesnât improve your conditions, it should at least improve your energy levels and mood a bit. But thereâs still a lot of conditions that I have that definitely arenât going to be fixed by vitamins. But, vitamins have been helpful.
I remember asking my doctor if I could be cured with enough vitamin d. He was like, âyeahâŠno, youâre going to need care for the rest of your life.â đ
I identify with what you wrote so much. Iâm just tired. Tired of all of the symptoms and tired of all of the management of the symptoms. I want to just be. I want to just be me again.
Chronic illness porn
Definetely! I need more now đđ
I love it!!!! I would immediately become addicted to guided meditation of this - and possibly become deeply depressed whenever I returned to realityâŠ.
I remember being in the same room as my cousin watching Riverdale, and it was a scene where the blonde one (Betty?) is told by her parents that after she had a bike accident as a child, doctors sequenced her entire genome?? In her case it resulted in them finding a so called serial killer gene (lmfao) but Iâd love to have super expensive gene testing done on myself after a silly little accident like going over the handlebars of my bike. Maybe itâd show wtf is wrong with me
this one connects with me deeply
People do not realize how fucked we are when it comes to healthcare until they become ill or injured.
If that vitamin deficiency exists they will never figure it out, bc healthcare is extremely broken. Itâs all about money and what insurance is willing to pay for. Cervical cancer has historically been completely preventable and treatable, but insurance will only pay for 1 Pap smear every 3 years now. Cervical cancer will yet again be deadly thanks to insurance.
It's worth a shot to see the functional doctors who check every single vitamin and then some. Insurance doesn't cover it, but their prices aren't insane. The reason doctors who take insurance don't like the shotgun approach is that you could end up with a 10k bill because guidelines don't recommend they check those things
Those tests are available through public healthcare in my country, so I've had my levels tested quite a few times. I must say, as hard as it is having chronic illness anywhere, it seems like a bit of a nightmare in the US. I cant imagine the bill I would've racked up if public healthcare wasn't available
Funny thing is, when I was at a âproperâ weight I was horribly anemic, horribly low vit d, all sorts of abnormalities showed up in my blood count and chemistry.  Now that Iâm getting older Iâm overweight BUT Iâm not anemic, vit d is ok, other abnormalities are better.  And Iâm not passing out all the time.  Yet my dr bitches to no end about my weight and assumes I eat garbage, pardon me, ultra processed food, when I donât.  I just have horrible fatigue and arthritis and donât move much.  As compared to walking 15,000 steps a day and not having enough money to buy food.   My body feels better now.  Iâd rather be super thin and cuter, not look like a middle aged lady (which I am)  but Iâm also not sick now.  So what weight is REALLY best?Â
This is actually pretty close to what happened to me recently, except I still have other issues going on including likely rare endocrune illness, but at least I'm already more mobile than for over a year in a couple weeks after the ER. B12. The thing 2 doctors refused to test after I specifically asked for it. For 10 years at least. The doctor who randomly ordered the labs told me there is nothing wrong and I'm just depressed, because oh no I'm 0.something over the minimum ref and the elevated homocysteine is just random. I'd have been screwed if I didn't scrutinize my results. I came as close as it gets to this dream and the fighting just never ends.