Autoimmune Disorder Thread
Replies
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That's very encouraging Cyndi!!!
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Interesting to hear so many with D deficiency. I also have D and B12 deficiency. Docs atrribute it to autoimmune effecting my stomach & causing malabsorption. Leaky gut syndrome? Despite supplementing both in megadoses, my levels stay low. (D increased from 11 to 20) I'm hoping that being on Keto & being grain free will lead to healing and improved absorption. Time will tell! I'm in NH, so similar weather to those in Canada. (I can cross the border in 2 hours) We do run low here, particularly in the winter.
@ndvoice I think you are right that many things depend on a good digestive track. While daily I took 20,000 units of Vit D3 and Vit K2 for at least 6 months before my test that showed my Vit d levels in the low 90's it was at the same time my IBS cleared up which I expect was related to my leaking gut for years.
I do hope you get your Vit D level out of the danger zone ASAP.0 -
SamandaIndia wrote: »Hi there, forgot to introduce myself. Samanda here, now living in the Netherlands where the gorgeous autumn leaves are falling. I was in India for 4.5 years before this for work. An Aussie and a scientist that now manages IT projects. If that helps you pigeon hole me? Love helping people and making folk laugh.
Hi from Rotterdam. Just following along. When I transitioned to LCHF I had a terrible time getting regular again. I think that's also a function of intestinal changes in bacteria. I found that magnesium ascorbate, further supplementation with high dose Vitamin C and good probiotics can really help.0 -
SamandaIndia wrote: »Hi there, forgot to introduce myself. Samanda here, now living in the Netherlands where the gorgeous autumn leaves are falling. I was in India for 4.5 years before this for work. An Aussie and a scientist that now manages IT projects. If that helps you pigeon hole me? Love helping people and making folk laugh.
Hi from Rotterdam. Just following along. When I transitioned to LCHF I had a terrible time getting regular again. I think that's also a function of intestinal changes in bacteria. I found that magnesium ascorbate, further supplementation with high dose Vitamin C and good probiotics can really help.
In Den Haag and could just hug you! Thanks for the tips on getting regular -they are just what I need now.1 -
GaleHawkins wrote: »Autoimmune diseases have really impacted our home. I did not know what LCHF when I started it. I was just try to escape starting Enbrel for pain management due to it increase risk of cancer and other bad things. In my simple mind I thought perhaps cutting out grains and sugars would work and it did within the first 30 days.
While my pain dropped from around 7-8 to 2-3 in the first 30 days a year ago I have just started to work on the last 2-3 level. A week ago I started on Wobenzym N systemic immune enzymes and so far no side effects even taking 40 a day vs 6. From what I can read one needs to give them a month to see if the Wobenzym N will be helpful. Here are a few links that I read before in invested in a stock pile.
livestrong.com/article/161756-benefits-of-wobenzym/
https://mskcc.org/cancer-care/integrative-medicine/herbs/proteolytic-enzymes
advancedalternativescenter.com/Wobenzym_Systemic_Enzyme_Therapy_s/171.htm
This next one was very helpful with some of the science. It is a limited version of the book he sales $10. yourhormones.com/documents/Systemic_Enzyme_Therapy_Hormone_Health_Edition.pdf
While Wobenzym N is not a medicine the next like is similar to a drug insert with half-life, etc info. zdroj.mysteria.cz/files/WOBE.pdf
I have never be into enzymes before so I am clueless of the outcome of this trial of Wobenzym. It was developed about 50 years ago at a college in NY then Dr. Wolfe total it to Germany to produce and test it. 40 years later it is used worldwide by healthcare providers but not so much my MD's in the USA. I think they have like 100 million users worldwide. One thing that impressed me was there has been many clinical trials in the literature with no death related to Wobenzym N that has been reported.
Where it works or does not work for me I will report by the end of the year. Has another others had any experience with Wobenzym N. The price on eBay/Amazon runs $0.10 - $0.15 per tablet depending on the size bottle that can range from 100 to 800 tablets. The 200 count runs about $30.
I think there is a lot of rip off products aimed at those of us with autoimmune diseases. I am hoping with Wobenzym having been on the market in a major way for 40 years means it must work for more than not. Hopefully I will find the side effect of weight loss that some report with Wobenzym.
I do know LCHF works well to cut my arthritis pain down to where I can function OK.
bump this. This is so interesting....for anyone that's new like me...with auto-immune issues read back on the links on vitamin D. Very interesting stuff. My D level has been low for years and I just started taking 10,000IU and my level just got into the really low to low but normal range(31) (31-100 is considered normal). I really considering increasing my dose to 20,000IU until my levels are back up and bake in the sun a bit along with k2.
It pisses me off that this is not more readily available to the public. I shouldn't have to do so much research to find this. This should be promoted by PCP and GP.3 -
Does anyone have a rec for a good Vitamin K2?1
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check this out!
http://www.healthfeed.us/the-all-natural-way-to-reverse-rheumatoid-arthritis-doctors-are-in-complete-denial-about/5/
article highlights importance of vitamin D. I don't know if this was shared already but this has me excited.3 -
@rugged1529 thanks for the bump because last week I was trying to remember when we got on Wobenzym at our house. The wife and I still take Wobenzym daily.
I finally got my Vitamin D levels near 100 but it took the better part of a year doing 20,000+ units daily but I was down in the low 20's. Now 50 is considered the min levels per some with 75-100 being required to reverse health issues. Testing for D is mission critical in my view.
lifeextension.com/Vitamins-Supplements/itemLC120766/C-Reactive-Protein-CRP-Cardiac-Blood-Test
2.5 years into KETO I am convinced that the lowest CRP level is my basic tool to judge my WOE, movement, and supplements value to my health.
@macchiatto I do not buy a lot of supplements from Life Extension but I do use their Vit K2 because its blend mimics some used in testing results I have seen from other sources. While their prices are not super low I do trust their research of articles better than most supplement sales companies. They give their references used in all articles and that means a lot to me with my healthcare educational background.
On Vitamin D I personally think getting to levels of 90-100 is job one to reverse any health care concerns and drive CRP as low as possible. One can not go from 20 to 100 overnight either.1 -
I am 25 and I've had hashimoto's since 11 years old. I'm using keto for fat loss, and also I feel like crap when I eat sugar and carbs! I've tried numerous other methods and nothing worked. I've lost 15lbs since March 4th, and I have a lot more energy! This will be for life.3
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@GaleHawkins no problem. People need to know. What is the ratio of d3 to k2 that you take? or does it not matter as long as your taking K2...1
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Thanks @GaleHawkins. I'll look into Vit K2. I had vitamin D deficiency a few years ago (and got lazy about taking vitamin D), and it popped back up right away with supplementation. But I hadn't heard about the need for Vit K2 - and as someone with a history of DVT, I'll have to carefully sort out its role in coagulation. So much to balance!
K2 is not K1. K1 affects coagulation, @neodiver
I've dug in, and unless every resource I've checked is wrong, K2 does not affect coagulation or medicinal blood thinners, etc.0 -
Interesting to hear so many with D deficiency. I also have D and B12 deficiency. Docs atrribute it to autoimmune effecting my stomach & causing malabsorption. Leaky gut syndrome? Despite supplementing both in megadoses, my levels stay low. (D increased from 11 to 20) I'm hoping that being on Keto & being grain free will lead to healing and improved absorption. Time will tell! I'm in NH, so similar weather to those in Canada. (I can cross the border in 2 hours) We do run low here, particularly in the winter.
@ndvoice - I can also personally attest that part of this, particularly when thyroid or leaky gut is involved, is low stomach acid. You can't break these nutrients down to absorb them... Even with K2, and such, I couldn't get my levels up until I added in the stomach acid/digestive enzyme component. Apparently, when the thyroid slows metabolism, it slows digestion, too. Same with leaky gut - it slows acid production so that it doesn't "leak" out in to the body and such.1 -
baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...1 -
GaleHawkins wrote: »@rugged1529 thanks for the bump because last week I was trying to remember when we got on Wobenzym at our house. The wife and I still take Wobenzym daily.
I finally got my Vitamin D levels near 100 but it took the better part of a year doing 20,000+ units daily but I was down in the low 20's. Now 50 is considered the min levels per some with 75-100 being required to reverse health issues. Testing for D is mission critical in my view.
lifeextension.com/Vitamins-Supplements/itemLC120766/C-Reactive-Protein-CRP-Cardiac-Blood-Test
2.5 years into KETO I am convinced that the lowest CRP level is my basic tool to judge my WOE, movement, and supplements value to my health.
@macchiatto I do not buy a lot of supplements from Life Extension but I do use their Vit K2 because its blend mimics some used in testing results I have seen from other sources. While their prices are not super low I do trust their research of articles better than most supplement sales companies. They give their references used in all articles and that means a lot to me with my healthcare educational background.
On Vitamin D I personally think getting to levels of 90-100 is job one to reverse any health care concerns and drive CRP as low as possible. One can not go from 20 to 100 overnight either.
@GaleHawkins - I went from 56.9 to 107 on Vit D in 6 months. I was taking 40,000 IU D3 with 200 mcg K2/M7 during that time. I dialed it back to half that, sometimes a quarter if I'm out in the sun a lot... Should be interested to see results in another month or so.
EDITED TO ADD: Actually, in looking, in a year, I went from 38 to the 107 on my D3. That 56.9 was the mid-point on that climb. I'd been in the 50's before the 38, but a poorly understood dosage change had me undersupplementing, and so it dropped again. I was in the 20's a few years back...
I have been using LE for a long time, since I started, but I couldn't get it this last time, and so I'm using the Jarrow that is M7 only... I don't notice a major difference, but test results and time will tell.1 -
rugged1529 wrote: »@GaleHawkins no problem. People need to know. What is the ratio of d3 to k2 that you take? or does it not matter as long as your taking K2...
@rugged1529 - The numbers i keep hearing are 10000 IU D3/50 mcg K2 (M7)... Recommended max a day without doctor monitoring is 40000 IU D3/200 mcg K2/M7 form, taken in a single dose or split into two doses, once first thing with fatty content, second dose with lunch/by 2 pm or so.2 -
KnitOrMiss wrote: »rugged1529 wrote: »@GaleHawkins no problem. People need to know. What is the ratio of d3 to k2 that you take? or does it not matter as long as your taking K2...
@rugged1529 - The numbers i keep hearing are 10000 IU D3/50 mcg K2 (M7)... Recommended max a day without doctor monitoring is 40000 IU D3/200 mcg K2/M7 form, taken in a single dose or split into two doses, once first thing with fatty content, second dose with lunch/by 2 pm or so.
I have been taking 10k IU for the past two months. I'm starting 20k soon with k2. Did you notice a difference in how you felt or notice anything different from your lowest d levels to your highest?0 -
I'm new here but I was diagnosed with hashimoto's disease, an autoimmune disease of the thyroid. for a while I was on synthroid and I was on a gluten-free/low carb diet and I currently have no low levels of thyroid hormone and not on synthroid anymore, not sure if this will happen to anyone else but felt like adding my story2
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KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.2 -
Just throwing this in the mix... I had/have Hashimoto's (never sure what to say exactly since my thyroid was removed due to cancer)... but also, I had my Gallbladder removed. Not because of stones. It was 'overactive'. When the surgeon took it out, it was inflamed/swollen. No real diagnosis but 'they think it is autoimmune' was his answer when I asked why.1
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food_lover16 wrote: »Just throwing this in the mix... I had/have Hashimoto's (never sure what to say exactly since my thyroid was removed due to cancer)... but also, I had my Gallbladder removed. Not because of stones. It was 'overactive'. When the surgeon took it out, it was inflamed/swollen. No real diagnosis but 'they think it is autoimmune' was his answer when I asked why.
My gallbladder just quit working, no stones. It was so inflamed upon removal it had adhered to my liver with scar tissue. I have RA and celiac so maybe autoimmune issues could play a role.
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baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.0 -
rugged1529 wrote: »KnitOrMiss wrote: »rugged1529 wrote: »@GaleHawkins no problem. People need to know. What is the ratio of d3 to k2 that you take? or does it not matter as long as your taking K2...
@rugged1529 - The numbers i keep hearing are 10000 IU D3/50 mcg K2 (M7)... Recommended max a day without doctor monitoring is 40000 IU D3/200 mcg K2/M7 form, taken in a single dose or split into two doses, once first thing with fatty content, second dose with lunch/by 2 pm or so.
I have been taking 10k IU for the past two months. I'm starting 20k soon with k2. Did you notice a difference in how you felt or notice anything different from your lowest d levels to your highest?
@rugged1529 - I bounced around with different brands of D3, but I did best with the drop ones. Mixed into a drink or chugged... Can taste bad, but absorbed better, I think. I'm taking Doc's Best brand now.
For the K2, I've always, until last month, done the Super K Plus formula from Life Extension. This time, I was out and needed it faster than amazon, so I hit up a local vitamin shop and got the Jarrow brand. But I've got so much other health stuff going on, I can't really give a fair assessment. I've definitely been more fatigued and such, though. Will be switching back ASAP...just because the Jarrow is M7 form only, and the LE is K and K2...both M4 and M7...0 -
KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.1 -
baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.
Pfft. I am negative on all of those most of the time. I have had positive ANA's in the past... The 90's LOL Not since then. My cRP is always normal too. My rheumy fired me because I was seronegative on everything, even though I periodically can't get my arm above my head or use scissors. ... We need an eye-rolling emoticon.
All those normal tests don't change the fact that I have three AI diseases, including a thyroid that almost does not function at all.
Keep pushing. It's a PTA but if you can get some meds to help it will be worth it. (hug)2 -
@baconslave drop mince crumbles behind you as you wander through the rabbit-holes so we can track you for rescue (breadcrumbs are just too carbybaconslave wrote: »I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long. )
2 -
canadjineh wrote: »
@baconslave drop mince crumbles behind you as you wander through the rabbit-holes so we can track you for rescue (breadcrumbs are just too carbybaconslave wrote: »I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long. )
1 -
baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.
Isn't TGA the main one for Hashi's? TPO and TGA are the two I know they recommend, I just can't recall which is which offhand. My TGA was <1 IU/mL... My TPO was 1 IU/mL and the range is <9... The fact that there was anythign on the test concerned me, though it didn't concern ANYONE ELSE. These were run in May 2016. I've no idea when/if there's any point to running these again.
I had a positive ANA in April 2015 - which was right around the time my thyroid stalled out the first time, but I've heard those tests can give false negatives. It was shown to be Nucleolar, which I've no idea what that is/means. The Titer was 1:80, which both docs brushed off and said "retest in 6 months)...
I can't find that I've had a CRP done, either. I did have a Celiac test run that came back negative, too, but I have no idea which test it was and can't remember when it was done, so I don't have that test. In fact, I remember it so clearly because they lost my first test, and we had to rerun it, and I had a whole fight with the lab management, etc.
So what is the true concern with seronegative autoimmune conditions? Anyone know?0 -
baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.
Pfft. I am negative on all of those most of the time. I have had positive ANA's in the past... The 90's LOL Not since then. My cRP is always normal too. My rheumy fired me because I was seronegative on everything, even though I periodically can't get my arm above my head or use scissors. ... We need an eye-rolling emoticon.
All those normal tests don't change the fact that I have three AI diseases, including a thyroid that almost does not function at all.
Keep pushing. It's a PTA but if you can get some meds to help it will be worth it. (hug)
Waiting on Plaquenil to start working. I'm taking pilocarpine for the dryness. But it doesn't work at night. Which is the ONLY time of day I NEED IT TO WORK. I can't find anyone else on earth who has this particular weirdness other than my dad ANYWHERE. What on earth is my body doing during sleep? Nuts...1 -
KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.
Isn't TGA the main one for Hashi's? TPO and TGA are the two I know they recommend, I just can't recall which is which offhand. My TGA was <1 IU/mL... My TPO was 1 IU/mL and the range is <9... The fact that there was anythign on the test concerned me, though it didn't concern ANYONE ELSE. These were run in May 2016. I've no idea when/if there's any point to running these again.
I had a positive ANA in April 2015 - which was right around the time my thyroid stalled out the first time, but I've heard those tests can give false negatives. It was shown to be Nucleolar, which I've no idea what that is/means. The Titer was 1:80, which both docs brushed off and said "retest in 6 months)...
I can't find that I've had a CRP done, either. I did have a Celiac test run that came back negative, too, but I have no idea which test it was and can't remember when it was done, so I don't have that test. In fact, I remember it so clearly because they lost my first test, and we had to rerun it, and I had a whole fight with the lab management, etc.
So what is the true concern with seronegative autoimmune conditions? Anyone know?
The TGA was done as well. I forgot to add that one.
It's been a year on the ANA, ESR, RF and the thyroids, I may have him rerun them next month and ask for a WBC and look at that. It may not tell him anything, but it might tell me something.
I don't know what the concern is...for the patient it's the damn symptoms. Nothing happens in a vacuum. Something has to be happening somewhere. If there's smoke, there's fire, right? Why else would you have all the symptoms of Sjogren's (which are pretty damn specific) unless there was something somewhere? But many many doctors won't treat people who are seronegative as having the disease. It doesn't fit their rigid criteria. Which is insane since autoimmunity presents so differently in people. But that's their rules. I'm darn lucky my doctor isn't as rigid. I get it to a degree. If obvious autoimmunity doesn't show up in their labs, then what is there to treat? What can they treat? They don't know the cause, so they can't find a solution. They need to learn to hone their "Where's Waldo" skills.
IMO, a valid response from a medical professional is not "can't find anything. I give up." This isn't Hogwarts. It's not magic. Something is happening somewhere. They just aren't looking in the right place. Unfortunately this apparently, from what I've read, happens pretty often. Sjogren's patients often wait 7 years before finally getting their definitive thumbs-up. 7 frickin' years. I had a breakdown the other night thinking about how I'd deal with all this *kitten* in my 70s...maybe something will finally show up then. SMH.1 -
IMO, a valid response from a medical professional is not "can't find anything. I give up."
Totally agree with this...when I fainted at work for no apparent reason I spent months getting test after test after test done...in the end the doctor concluded it was a "mystery fainting episode" which means absolutely NOTHING1
This discussion has been closed.