Anyone with Hashi's or ANY Auto-Immune Condition...
Replies
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food_lover16 wrote: »
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
@food_lover16 - To me, that sounds like you EDITED TO ADD: ***MIGHT*** have Hashimoto's Thyroiditis - or another form of auto-immune thyroid issue. Any untreated auto-immune issue will continue to spread to the next most vulnerable system. Auto-immune issues tend to trigger a domino-like effect when untreated. Have you gotten any of your issues under control yet?
***Might, based on recent information uncovered in my own research about my own issues. I'm not a medical person of any sort, nor am I intending to give advice - more just crowd-sourcing shared research for your own leaping off points and discussions with your own medical teams.***1 -
KnitOrMiss wrote: »food_lover16 wrote: »
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
@food_lover16 - To me, that sounds like you have Hashimoto's Thyroiditis - or another form of auto-immune thyroid issue. Any untreated auto-immune issue will continue to spread to the next most vulnerable system. Auto-immune issues tend to trigger a domino-like effect when untreated. Have you gotten any of your issues under control yet?
I find this to be true, because I started having inflammation issues in my elbows before, it spread to my other joints (knees, shoulders, and hips). I do wish I started researching sooner.1 -
rugged1529 wrote: »KnitOrMiss wrote: »food_lover16 wrote: »
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
@food_lover16 - To me, that sounds like you have Hashimoto's Thyroiditis - or another form of auto-immune thyroid issue. Any untreated auto-immune issue will continue to spread to the next most vulnerable system. Auto-immune issues tend to trigger a domino-like effect when untreated. Have you gotten any of your issues under control yet?
I find this to be true, because I started having inflammation issues in my elbows before, it spread to my other joints (knees, shoulders, and hips). I do wish I started researching sooner.
@rugged1529 - The best thing is that you've found one of the better diets to help with reducing inflammation. While your condition may or may not be reversible completely, your symptoms can often be reduced dramatically. Avoiding the main inflammation/immune triggers of gluten/dairy/soy/sugar help. After those are eliminated (usually following a protocol of someone's out there), you can often add some things back in to see if they bother you. Most people without actual dairy allergies or sensitivities can add back in some forms of conventional dairy. Fermented soy is reasonable safe for most people, to my understanding. Gluten is almost always to be avoided long term, as is refined sugar. Most folks can heal their bodies to be able to tolerate most naturally occurring sugarsi n small amounts somewhere down the road.
There are also supplements that may or may not help reduce your inflammation, but I suggest finding a functional medicine practitioner who can run genetic tests to figure out what will most likely help, what may hurt, and what things you need to change to give yourself the best quality of life (they generally can also help you with the elimination and testing on above triggers). I think this link is the most helpful one for finding someone in your area: lowcarbdoctors.blogspot.com/2 -
@rugged1529 I agree with @KnitOrMiss. I was 63 with fast rate of failing health before finding LCHF WOE that literally started reversing my failing health within the first 30 days back in Oct 2014. I just keep learning my way forward. LCHF may never be mainstream but once I started looking outside the USA at how people were addressing major health care issues on low budgets I got really excited. Now I do not write off any protocols used by others until by research only I determine them to be of a very low risk and keep my eyes open going forward.
Moving in the right direction is the key in my case. Not everything we try is going to work for us but each year we will have more tools that do work.
Best of success.4 -
KnitOrMiss wrote: »@missippibelle - The one thing that bothered me most about that summit was the positive assertion that startlingly high percentage (25% and up, if I remember) of Hashimoto's patients alone did not test positive on antibodies. I'm sure that statistic is similar to many auto-immune conditions. My understanding is that you have to get close to the point of permanent damage/multiple conditions before these particular flags start waving like a red flag before a bullfight.
In other words, don't assume that because you don't have antibodies that you aren't auto-immune. I'd check inflammation and other markers, too, and if in doubt, find a doc willing to address symptoms, even when tests aren't black and white.
May I ask what "foot" condition you're working to eliminate? I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common. I swear, I love that my Endocrinologist is a fan of crowd-sourcing information for research/investigation factors!
Do you have any color changes with the weird feelings and discomfort? What kind of pain, buring, cold burn, shocking pains?
The diagnosis I have finally been given is primary erythromelalgia, aka "man on fire". It can be secondary to may auto immune condtions, but so far, I have no known cause. I also have Raynaud's as well. Basically, my nerves that control my blood vessels in my feet over react to heat and cold. When my core body temp goes up (or sometimes for no reason at all) my feet turn blood red, burn, become very painful and sometimes swell. It is only relieved by elevation and cooling. Raynaud's is basically the same condition, but on the opposite end of the spectrum. My feet and hands will over react to cold. Raynaud's is fairly common, erythromelalgia is not, and both is very frustrating. I have ruled out cardiovascular disease by multiple tests and 2 vascular cardiologists. Aftter an 8 month wait to see a rheumatologist, he drew 21 vials of blood and found nothing. EM can be secondary to RA, SLE, sjrogrens, and some blood disorders. I have also read that it can show up years before the actual disease does.
The pain if feel during a flare up is very much like neuropathy. I will burning, cold burn, muscle spasms, and swelling. The temp of my feet is hot to the touch (or cold dep on what is flaring up). When it first started it was a 24/7 pain and redness, but now, on some meds, I flare up mostly in the evening or when I get warm or exercise.
I take diltiazem (a calcium channel blocker)
magnesium
alpha lipoic acid (great for neuropathy)
aspirin
It is maddening to not be able to find a cause. I keep thinking auto immune. I have several members of my family with issues that are either auto immune, or have conditions that "may" be auto immune. I also had a terrible immune system as a baby, and was given IgG to boost my immunities. I also have allergies, have begun to have excema in and behind my ears, and had severe endometriosis in the past.
Mom - celiac, IBS, interstitial cystitis, thyroid issues, neuropathy (low b 12 and secondary to celiac)
sister - celiac
aunt - auto immune hepatitis
2 cousins - auto thyroid
It's a lot to explain, I know. Sorry to be so long winded. I have eliminated grains to see if maybe gluten could be some of the problem. I have read of people having neuropathy from gluten without GI symptoms. I also need to lose the 10 pounds I have gained since this all started. I lost 40 pounds years ago on weight watchers, but intense exercise has always been a part of my maintenance success. Exercise is very hard for me. I try to do it anyway, but it causes a lot of pain and flaring. I bought a recumbent bike, walk sometimes, and am working on adding yoga right now. Pressure and too much "flexing" of my feet can bring on a flare as well.
It is sooo weird! I sometimes have 1 foot hot and red, and one cold and white, and sometimes one can be half and half.
Oh and I am not diabetic either. No normal causes of neuropathy. The strange part is when I am not flaring, I have no pain at all.
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@missippibelle - in answer to your question. I don't generally notice much any color changes. If anything blotchy, and "hot" to the touch from the outside, but generally only after I've attempted to "scratch" it and such.
The pain I can only describe as an itching and burning feeling deep under the skin. Running hands under cold water eases it a little, but only while hands are IN the water. Returns within seconds after water is stopped. I googled neuropathy, and really, it doesn't sound like that, at all. it's mainly the palms of my hands and the soles of my feet, and not always both at the same. Fingers and toes, also sometimes. But not the tops. scratching them doesn't help. Rubbing/wringing hands doesn't work. If my hands are laying flat, literally touching nothing but the sheet or something, with no airflow, I might be able to get it to calm down enough to ignore it. Grasping something tightly or pressing/holding anything with pressure can flare it. something going across my hand or sliding/rubbing/texture can trigger it/flare it. Like if I did something right now, it probably wouldn't do anything, as my hands haven't been an issue in over a week, I think. I've had it in my hands without my feet, but not my feet without my hands, I don't think. I haven't noticed it being worse in cold or hot weather, but I haven't been in hot weather since it started (only this year so far)... It doesn't feel like an electrical current. This is like if you went 1/8" to 1/4" under the skin and put a heating pad that created itching and discomfort flat on the the surface of my palm. It's there, but I can't get it it. I'm sorry, I really don't know how to describe it. Like a sunburn when you first get it, how it's hot and itchy, but if you scratch it hurts, but without it hurting with a scratch. Absolutely NONE of it affects the surface. It also resembles how the surface of my skin feels when I cut jalapenos without using gloves (but as I said, UNDER the skin). I've had my hands itch and burn off and on for over a week with some strong ones (even after using lime/lemon, baking soda, vinegar, degreaser, milk, everything to try to get it off - admittedly, I've always had sensitive skin - like neosporin and first aid cream can give me a rash). Really, nothing has helped except time. I have been playing supplement roulette trying to figure it out, in case of toxicity. Not related to thermogenic food effects though....as right now my face is warm, but hands are fine.
(((Previously, when extremely tired, I've gotten pain that radiated out from my bones, more my lower leg bones than anything. Doc tested me for Lupus, twice, but no indicators. It's been a while on that, too. Started to act like it was going to come a week or 2 ago, but for whatever reason, it didn't.)))
OMG, this all makes it sound so big and crazy and scary. I am not diabetic, but I do have insulin resistance, PCOS, hypothyroidism, high blood pressure (side effect of BCP, only ever had HBP once while PG, no other time until got back on BCP at 35.), etc. I've not had bad blood sugar numbers ever, really, that I know of, but I've had higher insulin numbers, and I'm still in the morbidly obese weight category (5'4", 40 Y.O., 282 pounds or so...). I have not been able to isolate it to specific conditions (food, sleep, workouts, supps, etc.). Nothing is consistent. Most likely culprit if not something autoimmune is borderline B or Selenium toxicity. I added in a thyroid combo supplement a while back because I was out of my iodine (which was one of the only things that had ever helped my thyroid symptoms, but to feel good, I had to be way over acceptable blood range)...and I wanted to try adding in a few of the other ones suggested by Maria Emmerich.
That supp had B-6, Folic Acid, B12, Iodine, Zinc, Selenium, Copper, L-Tyrosine, Guggal, and Ashwagandha. I'd been taking the Ashwa separately becaase this was really low. Because of getting back on Glucophage (metformin), I'd been trying to stick with getting extra B12 due to absorption interference. I dialed back on my other tyrosine does, kept my zinc where it was (doubled up on days I was exposed to germs/flu at work - no flares with that - plus had been taking it WAY longer). Had stopped taking my folate in October due to high test levels. Was still taking B-Complex, and a NAC with Selenium and Molybdenum - but this last one was seemingly at random. I'd dropped my vitamin C supp, because I was eating oranges and red peppers and berries and such. Stopped my l-glutamine for a while, but am back on it partially. Stopped 5-htp because was interfering with sleep. Had dialed back on my A, because I was eating more organ meats... Don't think I changed anything else. I know that is a lot...sorry... And absolutely, no guarantee that played in...AT ALL.
Will add to this if I remember anything else. Will respond separately to the rest of the message. Thanks for sharing!1 -
KnitOrMiss wrote: »rugged1529 wrote: »Hello
I was diagnosed with RA about 6 months ago. I kept getting flare ups in my knees (elbows hurt too). They started me on methotrexate which I hate because of side effects. When I discovered keto, I was doing it for weight loss but notice I was feeling better and I started reducing my medicine. Today I feel the best I've felt in months (maybe a couple years). My therapist also stated to me that my body would need to heal before losing significant weight. In any event I feel great. Weight Loss, now, seem to be a welcomed side effect.
@rugged1529 ... @GaleHawkins - since you avoided medications like this, do you have any suggestions with all your protocol studies? I know RA is a different beast than most, but I was just wondering... @anglyn1 ?
So far I'm maintaining on just plaquenil which doesn't seem to cause me any bad side effects. I take collagen in my morning coffee and I started regular strength training. This seems to have made a big difference in how my joints feel. Sometimes I feel almost completely normal now which is something I never expected to say.
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lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.0 -
GaleHawkins wrote: »lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.
Do you have any more articles or maybe videos we can check out from reputable sources?1 -
rugged1529 wrote: »GaleHawkins wrote: »lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.
Do you have any more articles or maybe videos we can check out from reputable sources?
Check out the 67 article sources listed on page 4 of the article link that I posted above.
My Dad died in 1993 from Congested Heart Failure. I was glad to learn Pycnogenol seems to offer hope.
Let us know what you think after checking out the references.1 -
Just to add my dysfunction to the list:
I have Raynaud's as well. Such a PITA. Me and my ice-cube ghost-fingers and toes...
I'm seronegative for hypo, Hashi's, and Sjogren's (sicca symptoms and chronic fatigue)...still have all the darn symptoms though so something is frickin' going on.
Oh yeah... and the new and weird nightly foot-cramping-without-a-pillow-between-knee-to-ankle (It's almost like a mutated restless leg thing) and the joint pain...*insert epic eye roll* (Yes, mag is dialed in. If I take anymore of it I'll need to wear a diaper.) I have to take Aleve at night to keep my joints from making my nights worse than they already are due to the severe dry eye.
Nope...nothing AT ALL wrong over here according to the bloodwork so far...
Neg ANA, neg SSA, neg SSB, TPO fine, TGB fine, ESR fine, RF fine, TSH, T4, and T3 all in range.
We are still investigating hormones and cortisol rhythm...Or at least I'm committed to it. It's been 3 weeks and 3 calls and one visit to the reception desk and I STILL haven't gotten a return phone call from the jerk about the cortisol testing. I got printouts of my blood work. I have low-testosterone, even for a female which makes zero sense as I workout so much, and estrogen dominance...if the dr even knows how to look for such things...SMDH. Someone is getting fired soon, I think. I found an integrative medicine clinic tied to the university in the next city over that is on my insurance.
*plotting*
I too am completely eliminating gluten. (My low-carb wraps are glutened. And I'd been sneaking a piece of wheat bread here and there.) Plus I'm employing Gut Healing 101. I'm not sure if I'm going to go ahead and elim dairy and soy at the same time as well yet...I'm kindof waiting on the darn doctor to finish my blood testing up here. I need to know what my cortisol is doing. I've been delaying a Vitacost order for 3 weeks now waiting on this nonsense. He still hasn't checked any nutrient deficiencies. That'll take another 2 months...this is ridiculous. Yay, Appalachia...way to defy stereotypes... *another eyeroll*
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rugged1529 wrote: »GaleHawkins wrote: »lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.
Do you have any more articles or maybe videos we can check out from reputable sources?
https://examine.com/supplements/pycnogenol/
@rugged1529 this is a nice summary of 85 pieces of research relating to Pycnogenol benefits.
I am ordering more Pychogenol for the family since 200 mg daily seems to be highly tested. I am sure there are exceptions but at this point after this read I think about 100% of readers should consider all these Pychogenol testing for many many health condition.0 -
GaleHawkins wrote: »rugged1529 wrote: »GaleHawkins wrote: »lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.
Do you have any more articles or maybe videos we can check out from reputable sources?
https://examine.com/supplements/pycnogenol/
@rugged1529 this is a nice summary of 85 pieces of research relating to Pycnogenol benefits.
I am ordering more Pychogenol for the family since 200 mg daily seems to be highly tested. I am sure there are exceptions but at this point after this read I think about 100% of readers should consider all these Pychogenol testing for many many health condition.
IF i'm not mistaken, looks like Pycnogenol and Black seed oil has similar properties. I wonder if they both do the same thing? I have some black seed oil i'm probably going to take both. I just ordered mine on amazon 120 count.0 -
@rugged1529 - I just read briefly about a protocol yesterday using black seeds to reverse Hashimoto's Thyroiditis. So interesting!0
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@rugged1529 I just went to reorder the Viva brand but it is not now available on their website or Amazon so I just ordered 4 bottles of Healthy Origins Pycnogenol Veg Capsules, 100 mg, 120 Count. This will give us enough for a good test drive.
If my C-Reactive Protein (CRP) is down next test cycle I may order more. I sense due to very low pain levels after adding Poly MVA and Artemisinin to the Bob Beck protocol (not really big into the ionic silver and Ozone water yet) it may be hard for me to tell is going to make a huge difference I expect.
I do have times when Wobenzym is hard to source but many sources of food based supplements are seasonal.
If Pycnogenol is half as beneficial as the claims on Amazon it will be a keeper I expect.
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GaleHawkins wrote: »@rugged1529 I just went to reorder the Viva brand but it is not now available on their website or Amazon so I just ordered 4 bottles of Healthy Origins Pycnogenol Veg Capsules, 100 mg, 120 Count. This will give us enough for a good test drive.
If my C-Reactive Protein (CRP) is down next test cycle I may order more. I sense due to very low pain levels after adding Poly MVA and Artemisinin to the Bob Beck protocol (not really big into the ionic silver and Ozone water yet) it may be hard for me to tell is going to make a huge difference I expect.
I do have times when Wobenzym is hard to source but many sources of food based supplements are seasonal.
If Pycnogenol is half as beneficial as the claims on Amazon it will be a keeper I expect.
So it sounds like you want to replace the wobenzym with pycnogenol....0 -
rugged1529 wrote: »GaleHawkins wrote: »@rugged1529 I just went to reorder the Viva brand but it is not now available on their website or Amazon so I just ordered 4 bottles of Healthy Origins Pycnogenol Veg Capsules, 100 mg, 120 Count. This will give us enough for a good test drive.
If my C-Reactive Protein (CRP) is down next test cycle I may order more. I sense due to very low pain levels after adding Poly MVA and Artemisinin to the Bob Beck protocol (not really big into the ionic silver and Ozone water yet) it may be hard for me to tell is going to make a huge difference I expect.
I do have times when Wobenzym is hard to source but many sources of food based supplements are seasonal.
If Pycnogenol is half as beneficial as the claims on Amazon it will be a keeper I expect.
So it sounds like you want to replace the wobenzym with pycnogenol....
@rugged1529 I plan to replace Wobenzym when I become OK facing a known premature death.
Wobenzym is a critical 60 year old product to reaching the 3rd or 4th quarters of life the best I can tell. Since I figure 95% of all disease is directly related to long term low grades if body inflammation I see Wobenzym in the same vane as Vitamin D and fish oil. You can Google off of their marketing blip below for proof of the value of Wobenzym. Few products stay around for 50+ years without adding value to the buyers.
wobenzymps.net/Wobenzym-Aging.html
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KnitOrMiss wrote: »@rugged1529 - I just read briefly about a protocol yesterday using black seeds to reverse Hashimoto's Thyroiditis. So interesting!
Hi @KnitOrMiss do you happen to remember where or have a link on this.... My next thyroid test is at the end of April and I want to see if I can drop my antibodies from original 1100 then after 6 months to 440 and then this past 6 months to close to normal. Just selenium and L-tyrosine is working so far, but it would be good to have another possibility.1 -
@canadjineh - It came across my Twitter feed from one of the various health professionals I follow, but I googled and found the actual link. Not a ton of info, but enough to start studying... greenmedinfo.com/blog/black-seed-may-treat-hypothyroidism-hashimotos-disease-clinical-trial-reveals
Ashawagandha is supposed to be another adaptogen that really can help with dropping the antibodies. Either that, the Wobenzym or both, if I remember right (can't find it in my notes) was said to drop antibodies by a huge margin. Are you gluten/dairy/soy/sugar free? Did you do the elimination and then see what caused you distress as to what you could safely include again?
Do you take digestive enzymes to help? Do you use L-glutamine to help with the gut wall strengthening/rebuilding that goes along with the autoimmune reactions?
These are all part of the big picture from that recent documentary series, supposedly. Anyway, that being said, taking Tyrosine was a crazy shocking major improvement for me, too. Do you take T4 meds, T3 meds, NDT, or some combination? Also, did you get Maria Emmerich's book when it was free? She also has Guggal and Zinc as major players. Zinc has been a huge improvement for me, too. The guggal I got in a blend... Can't tell if there is any different, as I stopped that for a while.1 -
5-htp because was interfering with sleep.
Your symptoms do share some similarities to mine, especially the part about pressure. I have a lot of problems finding shoes these days because pressure is a trigger for sure. Your symptoms also sound like a mixture of lupus/fibromyalgia. A doctor named Jay Cohen, MD had EM and did several studies and has a medication and supplement guide on his website to help people find the combination of drugs that will help. He advocates a challenge with 5-htp to see if you are serotonin sensitive. For some people with this condition SSRI's help, and some it makes it worse. He said to try the otc 5-htp to see if it makes gives improvement or makes it worse to help you know what direction to go in with meds. Did the pain get worse when you started or stopped the 5-htp??
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missippibelle wrote: »5-htp because was interfering with sleep.
Your symptoms do share some similarities to mine, especially the part about pressure. I have a lot of problems finding shoes these days because pressure is a trigger for sure. Your symptoms also sound like a mixture of lupus/fibromyalgia. A doctor named Jay Cohen, MD had EM and did several studies and has a medication and supplement guide on his website to help people find the combination of drugs that will help. He advocates a challenge with 5-htp to see if you are serotonin sensitive. For some people with this condition SSRI's help, and some it makes it worse. He said to try the otc 5-htp to see if it makes gives improvement or makes it worse to help you know what direction to go in with meds. Did the pain get worse when you started or stopped the 5-htp??
Actually, the pain may have started when I dropped the 5-htp... It was certainly around the same time. I took the 5-htp for MONTHS and MONTHS. Then just one week, it stopped helping and actually seemed like it might be interfering, so I just stopped taking it. I balanced it by taking it at night, l-tyrosine during the day (with thyroid meds)... I also had NAC and Taurine in the mix...
I've research Fibro, and it really doesn't seem to fit. My PCP has tested me for Lupus, twice. Negative. And in the grand scheme of my overall health, these things are really, REALLY minor compared to the thyroid issues, adrenal stuff, hormonal stuff, and all that. It's intense when I'm having an episode, but one it passes, @missippibelle - it's really out of sight out of mind. I actually haven't had a flare since i dropped my thyroid supplement and bounced around with my B's for a bit, so what, 2 weeks?
And I'm FINALLY back low carb, 3 days now, mostly. I'm not sure what on earth I'm doing at this point, but I'm looking into doing a formal gluten/dairy/soy/sugar elimination protocol to figure out what I can do... I'm kind of lost, admittedly, at the moment.1 -
baconslave wrote: »Just to add my dysfunction to the list:
I have Raynaud's as well. Such a PITA. Me and my ice-cube ghost-fingers and toes...
I'm seronegative for hypo, Hashi's, and Sjogren's (sicca symptoms and chronic fatigue)...still have all the darn symptoms though so something is frickin' going on.
Oh yeah... and the new and weird nightly foot-cramping-without-a-pillow-between-knee-to-ankle (It's almost like a mutated restless leg thing) and the joint pain...*insert epic eye roll* (Yes, mag is dialed in. If I take anymore of it I'll need to wear a diaper.) I have to take Aleve at night to keep my joints from making my nights worse than they already are due to the severe dry eye.
Nope...nothing AT ALL wrong over here according to the bloodwork so far... Neg ANA, neg SSA, neg SSB, TPO fine, TGB fine, ESR fine, RF fine, TSH, T4, and T3 all in range.
We are still investigating hormones and cortisol rhythm...Or at least I'm committed to it. It's been 3 weeks and 3 calls and one visit to the reception desk and I STILL haven't gotten a return phone call from the jerk about the cortisol testing. I got printouts of my blood work. I have low-testosterone, even for a female which makes zero sense as I workout so much, and estrogen dominance...if the dr even knows how to look for such things...SMDH. Someone is getting fired soon, I think. I found an integrative medicine clinic tied to the university in the next city over that is on my insurance. *plotting*
I too am completely eliminating gluten. (My low-carb wraps are glutened. And I'd been sneaking a piece of wheat bread here and there.) Plus I'm employing Gut Healing 101. I'm not sure if I'm going to go ahead and elim dairy and soy at the same time as well yet...I'm kindof waiting on the darn doctor to finish my blood testing up here. I need to know what my cortisol is doing. I've been delaying a Vitacost order for 3 weeks now waiting on this nonsense. He still hasn't checked any nutrient deficiencies. That'll take another 2 months...this is ridiculous. Yay, Appalachia...way to defy stereotypes... *another eyeroll*
Raynaud's is no joke for sure. Sorry you have to deal with it. For me, it is the lesser of the two evils, but still frustrating. I am the same way, NO abnormal blood levels so, YOU ARE NORMAL..ha! Ask my feet if they are normal. I had severe endometriosis before my hysterectomy at 34, so know I had estrogen dominance at this time. Let me share an experience I have had with my estrogen patches. I had always had extremely cold hands. My husband has always loved my cold hands on his bald head :-) After I had my last ovary removed I went on hormone patches. If I forget to change my patch on time, my hands get warm and clammy. He can tell if my patch is due based on the temperature of my hands. I had cut my dose in half for a while to see if the hormone had any effect on my feet. I recently increased the dose back to the original dose because the HOT flaring was a lot worse on the lower dose. I believe whole heartedly that hormones have a impact on this temperature Raynaud's/EM thing.
I am thinking of trying to find a doctor who specializes in compounded hormones to try to get in balance. I have been to so many to figure out my feet I have doctor fatigue. I would love to hear about your experiences with an integrative MD if you decide to go...where is this witch doctor you refer to?? Maybe I need an appointment too!
My first cardiologist thought I only had Raynaud's at first and started me on fish oil, niacin, and n-acetylcysteine. I have since eliminated them because they cause EM flares, but maybe they would help you?
Eliminating dairy is next for me. I had to get a good grasp on keto and gluten before I could move to dairy. I need to get more strict about hidden gluten too. My mother can't eat dairy and neither can my sister. My sister gets joint and muscle pain when she eats dairy. She recently challenged herself with dairy, and had to stop because of pain.
Cheese makes me happy, so ...ugh.
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May I just say that I love the discussion evolving within this particular rabbit hole?!?!?!
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baconslave wrote: »KnitOrMiss wrote: »...would probably really benefit from the episode today in "The Thyroid Secret" documentary series. It's all about the gut and autoimmune reactions. thethyroidsecret.com It's active for another 3-4 hours. It's 12:32 pm central time currently.
Things I learned today:- The gut is only a single cell layer thick - the skin alone is 7 layers thick!!!
- You can test NEGATIVE on antibodies tests and still have autoimmune thyroiditis.
- 90% of people have been exposed to or had a minor case of Epstein-Barr virus.
- The fluoride in our water alone can trigger an autoimmune reaction
- WOBENZYM is amazing, apparently! @GaleHawkins - you were ahead of the curve! Can cut Hashi's and Grave's antibodies by HALF using protocols.
- L-Glutamine helps in rebuilding gut lining...
Can I get a AMEN!
Yep. These points also apply to other immune diseases as well. Thank the Lord, cuz someone is going crazy over here over there being no antibodies but still sick.
SAnd that somebody bought L-glutamine today. And is ordering the Wobenzym later.
I have a feeling I will be going temporarily paleo soon. Bleh.
@baconslave - you can go pick up some l-glutamine pretty much ANYWHERE. Like Walmart, Walgreens, anywhere they sell protein powder or body building crap. You don't have to wait to get your order in. Apparently, there are different types, which i didn't know, specifically, though the kind I started with was fermented. I can't remember if my current type is... I'll have to look into it, because some types are better for liver support, some better for others... (Per Dr. Woo...er, I mean, Dr. Axe)...1 -
missippibelle wrote: »baconslave wrote: »Just to add my dysfunction to the list:
I have Raynaud's as well. Such a PITA. Me and my ice-cube ghost-fingers and toes...
I'm seronegative for hypo, Hashi's, and Sjogren's (sicca symptoms and chronic fatigue)...still have all the darn symptoms though so something is frickin' going on.
Oh yeah... and the new and weird nightly foot-cramping-without-a-pillow-between-knee-to-ankle (It's almost like a mutated restless leg thing) and the joint pain...*insert epic eye roll* (Yes, mag is dialed in. If I take anymore of it I'll need to wear a diaper.) I have to take Aleve at night to keep my joints from making my nights worse than they already are due to the severe dry eye.
Nope...nothing AT ALL wrong over here according to the bloodwork so far... Neg ANA, neg SSA, neg SSB, TPO fine, TGB fine, ESR fine, RF fine, TSH, T4, and T3 all in range.
We are still investigating hormones and cortisol rhythm...Or at least I'm committed to it. It's been 3 weeks and 3 calls and one visit to the reception desk and I STILL haven't gotten a return phone call from the jerk about the cortisol testing. I got printouts of my blood work. I have low-testosterone, even for a female which makes zero sense as I workout so much, and estrogen dominance...if the dr even knows how to look for such things...SMDH. Someone is getting fired soon, I think. I found an integrative medicine clinic tied to the university in the next city over that is on my insurance. *plotting*
I too am completely eliminating gluten. (My low-carb wraps are glutened. And I'd been sneaking a piece of wheat bread here and there.) Plus I'm employing Gut Healing 101. I'm not sure if I'm going to go ahead and elim dairy and soy at the same time as well yet...I'm kindof waiting on the darn doctor to finish my blood testing up here. I need to know what my cortisol is doing. I've been delaying a Vitacost order for 3 weeks now waiting on this nonsense. He still hasn't checked any nutrient deficiencies. That'll take another 2 months...this is ridiculous. Yay, Appalachia...way to defy stereotypes... *another eyeroll*
Raynaud's is no joke for sure. Sorry you have to deal with it. For me, it is the lesser of the two evils, but still frustrating. I am the same way, NO abnormal blood levels so, YOU ARE NORMAL..ha! Ask my feet if they are normal. I had severe endometriosis before my hysterectomy at 34, so know I had estrogen dominance at this time. Let me share an experience I have had with my estrogen patches. I had always had extremely cold hands. My husband has always loved my cold hands on his bald head :-) After I had my last ovary removed I went on hormone patches. If I forget to change my patch on time, my hands get warm and clammy. He can tell if my patch is due based on the temperature of my hands. I had cut my dose in half for a while to see if the hormone had any effect on my feet. I recently increased the dose back to the original dose because the HOT flaring was a lot worse on the lower dose. I believe whole heartedly that hormones have a impact on this temperature Raynaud's/EM thing.
I am thinking of trying to find a doctor who specializes in compounded hormones to try to get in balance. I have been to so many to figure out my feet I have doctor fatigue. I would love to hear about your experiences with an integrative MD if you decide to go...where is this witch doctor you refer to?? Maybe I need an appointment too!
My first cardiologist thought I only had Raynaud's at first and started me on fish oil, niacin, and n-acetylcysteine. I have since eliminated them because they cause EM flares, but maybe they would help you?
Eliminating dairy is next for me. I had to get a good grasp on keto and gluten before I could move to dairy. I need to get more strict about hidden gluten too. My mother can't eat dairy and neither can my sister. My sister gets joint and muscle pain when she eats dairy. She recently challenged herself with dairy, and had to stop because of pain.
Cheese makes me happy, so ...ugh.
I've been taking fish oil for awhile, and am taking n-aceytlcysteine right now. I haven't noticed any difference so far. I have niacin in the cart ready to buy for whenever I finally get that bloodtest. I have some niacin, but I accidentally bought the no-flush kind...
I feel you on the cheese. I have milk in the coffee, yogurt for breakfast, and an oz of cheese at bedtime...I'm waiting on the dairy until I get results from the cortisol thing and ditch coffee. I despise anything in coffee other than creamer or milk. I've already ditched the creamer as it has soy. I made a ranch salad dressing with coconut cream. My regulars have soybean oil...NOT a fan at all. It will happen. But it will be a week or more before I get there. I've tried AIP before, but there was so little I could stand eating that my carbs dropped too low and my eyes went into apocalypse mode again so I had to quit.
I do hope I can convince DH that the witch-doctor is the way to go. Maybe I'll just leave out the needle part...
I have ghost-fingers going on right this minute. It's weird typing only feeling half of each of your fingers. And then when you put warm stuff on them, they burn. Ugh. I hope my toes quit in time for my workout later.KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »...would probably really benefit from the episode today in "The Thyroid Secret" documentary series. It's all about the gut and autoimmune reactions. thethyroidsecret.com It's active for another 3-4 hours. It's 12:32 pm central time currently.
Things I learned today:- The gut is only a single cell layer thick - the skin alone is 7 layers thick!!!
- You can test NEGATIVE on antibodies tests and still have autoimmune thyroiditis.
- 90% of people have been exposed to or had a minor case of Epstein-Barr virus.
- The fluoride in our water alone can trigger an autoimmune reaction
- WOBENZYM is amazing, apparently! @GaleHawkins - you were ahead of the curve! Can cut Hashi's and Grave's antibodies by HALF using protocols.
- L-Glutamine helps in rebuilding gut lining...
Can I get a AMEN!
Yep. These points also apply to other immune diseases as well. Thank the Lord, cuz someone is going crazy over here over there being no antibodies but still sick.
SAnd that somebody bought L-glutamine today. And is ordering the Wobenzym later.
I have a feeling I will be going temporarily paleo soon. Bleh.
@baconslave - you can go pick up some l-glutamine pretty much ANYWHERE. Like Walmart, Walgreens, anywhere they sell protein powder or body building crap. You don't have to wait to get your order in. Apparently, there are different types, which i didn't know, specifically, though the kind I started with was fermented. I can't remember if my current type is... I'll have to look into it, because some types are better for liver support, some better for others... (Per Dr. Woo...er, I mean, Dr. Axe)...
I picked some up at Wally and have been taking it for just over a week. Other things they didn't have, like ashwaghanda. The adaptogen blend I have picked out doesn't have licorice. Licorice and I don't mesh. They didn't have the hyaluronic acid at mine either.2 -
KnitOrMiss wrote: »missippibelle wrote: »5-htp because was interfering with sleep.
Your symptoms do share some similarities to mine, especially the part about pressure. I have a lot of problems finding shoes these days because pressure is a trigger for sure. Your symptoms also sound like a mixture of lupus/fibromyalgia. A doctor named Jay Cohen, MD had EM and did several studies and has a medication and supplement guide on his website to help people find the combination of drugs that will help. He advocates a challenge with 5-htp to see if you are serotonin sensitive. For some people with this condition SSRI's help, and some it makes it worse. He said to try the otc 5-htp to see if it makes gives improvement or makes it worse to help you know what direction to go in with meds. Did the pain get worse when you started or stopped the 5-htp??
Actually, the pain may have started when I dropped the 5-htp... It was certainly around the same time. I took the 5-htp for MONTHS and MONTHS. Then just one week, it stopped helping and actually seemed like it might be interfering, so I just stopped taking it. I balanced it by taking it at night, l-tyrosine during the day (with thyroid meds)... I also had NAC and Taurine in the mix...
I've research Fibro, and it really doesn't seem to fit. My PCP has tested me for Lupus, twice. Negative. And in the grand scheme of my overall health, these things are really, REALLY minor compared to the thyroid issues, adrenal stuff, hormonal stuff, and all that. It's intense when I'm having an episode, but one it passes, @missippibelle - it's really out of sight out of mind. I actually haven't had a flare since i dropped my thyroid supplement and bounced around with my B's for a bit, so what, 2 weeks?
And I'm FINALLY back low carb, 3 days now, mostly. I'm not sure what on earth I'm doing at this point, but I'm looking into doing a formal gluten/dairy/soy/sugar elimination protocol to figure out what I can do... I'm kind of lost, admittedly, at the moment.
And it could be dropping the 5-htp had an effect. SSRI's increase serotonin availability and are commonly used for neuropathic type pain and also fibromyalgia and all sorts of chronic pain. Usually when you stop taking a med like that it is recommended you wean off slowly to prevent rebound pain, depression, etc...rebound of whatever you are treating. You body down regulates serotonin production. The sudden change could've caused some rebound pain/symptoms until your body figured out to produce more again. Hopefully it is gone for good!
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When I went off all supplements a few months ago to see how I was doing with the plan to start adding them back one at a time I went into major tell spin. The next day I went back on everything but it was two weeks before the pain became managed again.1
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GaleHawkins wrote: »When I went off all supplements a few months ago to see how I was doing with the plan to start adding them back one at a time I went into major tell spin. The next day I went back on everything but it was two weeks before the pain became managed again.
It just goes to show just how effective some supplements can be! I got lax about a few of mine and I could tell a huge difference.1 -
@baconslave
I hope you can find relief. I know how frustrating it is to want to work out and your body won't let you. The Erythromelalgia is like the warming phase of Raynaud's you described, only I get it all by itself mostly. Sometimes a have it from a Raynaud's attack when I get in the shower, but mostly from heat, pressure, and exercise. I am sitting at my desk at work right now with my pants rolled up, a fan on blowing on my feet and I spray menthol alcohol on them to try and cool off a flare. Thank goodness my fellow workers have all been with me since all of this started or they would think I am INSANE.
I have baby bear feet, they need to be not too hot, not too cold...just right. Stupid feet!
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KnitOrMiss wrote: »@canadjineh - It came across my Twitter feed from one of the various health professionals I follow, but I googled and found the actual link. Not a ton of info, but enough to start studying... greenmedinfo.com/blog/black-seed-may-treat-hypothyroidism-hashimotos-disease-clinical-trial-reveals
Ashawagandha is supposed to be another adaptogen that really can help with dropping the antibodies. Either that, the Wobenzym or both, if I remember right (can't find it in my notes) was said to drop antibodies by a huge margin. Are you gluten/dairy/soy/sugar free? Did you do the elimination and then see what caused you distress as to what you could safely include again?
Do you take digestive enzymes to help? Do you use L-glutamine to help with the gut wall strengthening/rebuilding that goes along with the autoimmune reactions?
These are all part of the big picture from that recent documentary series, supposedly. Anyway, that being said, taking Tyrosine was a crazy shocking major improvement for me, too. Do you take T4 meds, T3 meds, NDT, or some combination? Also, did you get Maria Emmerich's book when it was free? She also has Guggal and Zinc as major players. Zinc has been a huge improvement for me, too. The guggal I got in a blend... Can't tell if there is any different, as I stopped that for a while.
Thanks @KnitOrMiss!! I am celiac GF, but ages ago I did a foods challenge and dairy that is 'pre-digested' eg: yogourt or cheese doesn't seem to bother me (neither does butter/ghee but I think it's mainly because that's a fat and not a protein or carb). I haven't shown up as sensitive to any of the other usuals like eggs or nuts or shellfish or nightshades. I am sugar free (only use stevia on occasion) but do use organic tofu sometimes for dinner. I haven't taken enzymes, or glutamine but I do take extra zinc, copper, B vit, D3, A, magnesium, Rhodiola, Ganoderma Lucidum (Red Reishi Mushroom extract) plus the usual mega-multi's. I don't take calcium because my bone density is that of a 20 y.o. just tested last fall.
I also have never taken thyroid meds (my doc hasn't suggested it either mainly because all the other levels are within normal paramaters... just the antibodies we need to drop before damage is done.)
I ran out of my potassium a while ago and have been dealing with sore crampy muscles so I am adding it back in to see if there is improvement.
Any of the other stuff, if I drop it I KNOW within 3 days I am toast and it takes a couple weeks to recover again. I've tried to drop stuff at various times so I do know these are all necessary.
I'm gonna check into the other stuff, but I take so many pills, that I don't think I could take handfuls more like Wobenzym (GaleHawkins takes 20!!!??). Timing is also tough since I do IF too.3
