Hi MC friends,
I was Dx'd with LC in Feb.2012. I've had a hard time reaching complete remission for any length of time despite major diet eliminations. In March 2013, I was struggling with a flare so I tried rectal insufflation with O3 because I really wanted to avoid steroids. In hindsight that was a mistake. At first, the ozone worked. However, 1.5 mos later things began to decline, ultimately leading to D. I think the insufflation acted like abx and killed all bacteria. May 24th I learned I had C.Diff. I was prescribed Flagyl for 14 days, the D didn't stop. I saw a GI who does FMTs. He prescribed Xifaxin for 12 days. Then, on July 1st I had a colonoscopy with 4 biopsies and my first fecal transplant. The biopsies revealed lymphocytes/ inflammation. July 2 & 3rd I had subsequent FMTs. The GI put me on budesonide before my 3rd transplant. I was concerned to be on a steroid without proven negative C.Diff test results. This GI does have 100% success rate with treating C.Diff and he did say that there was no visual appearance of C.Diff (white patches/pus)...that happens in severe cases. After 6 days on budesonide I discontinued it, it hadn't changed the D. I should currently be happy because on Friday I learned the C.Diff tests were negative and on Sat. I opted to start the budesonide back up. However, I'm bummed because the D is still around and I'm constantly fearing about C.Diff. I just want the D to stop. I go about 2-3x day, normally only in the morning. I return for three more FMTs in 8 days because I want to keep infusing my gut with healthy bacteria. I have two beautiful little kids and a husband and I just want to be a healthy mom/wife to them. I appreciate any uplifting support you can offer, as I'm typing this in tears. It's been the most challenging time in my 34 years of life. Is it likely that the continued D is from MC or should I be paranoid that it's C.Diff? How long should it take for the budesonide to work? Sorry to vent but I know you guys are the best people to turn to for compassion.
Concerned- could use support!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Marie,
I'm sorry you're having these problems. I realize that it may seem that the harder you try, the less success you have, and to some extent, that's true. There's nothing wrong with trying hard, because it takes hard, dedicated work to defeat this disease. But we have to focus our efforts on the methods that are known to work, otherwise it's too easy to undo all the good, and unravel all the progress that we've made. Here is my 2 cents worth:
Remember that when treating MC, less is much better than more. IOW, most of us are more successful at resolving our symptoms if we eat less variety (simple, bland food, made of a minimum number of safe ingredients), and of course we have to totally avoid our food sensitivities. We tend to recover much faster if we do our own cooking, because eating out is extremely risky, especially before we are in stable remission. Eating delicious, highly-seasoned meals may be a lot of fun, but by doing so, we usually postpone our recovery, especially if we do so routinely.
And especially, most of us definitely do better if we cut out all supplements (except for safe forms of vitamins D and B-12), rather than to take more supplements. Contrary to popular belief (especially by many naturopaths), adding all sorts of supplements to our diet and trying all sorts of (I'm tempted to say, "off the wall", but let's just say "unconventional") treatments, are not the path to fast and easy remission. Many, many, members here have had their recovery derailed unnecessarily by falling into such traps.
Please remember that just because other members are able to get away with eating certain foods, or taking certain supplements does not mean that anyone else can safely do that. We are all different, and some of us have to be much more careful than others. It also takes some of us much longer to heal than others. It took me a year and a half to reach remission, for example, plus another year and a half on a very strict diet in order to reach the point where I was able to successfully add any foods back into my diet.
Sure, everyone wants to get their life back ASAP, but unfortunately with this disease, there are no shortcuts, and there are no free passes. It's a cruel and unforgiving disease, and it's never going to give us a break just because we don't deserve to have the disease. None of us deserve to have it, but the disease doesn't care. And those who attempt shortcuts frequently end up starting over, frustrated and depressed over their apparent lack of progress.
Note that FMTs are very effective for bringing lasting remission from a C. diff infection, but to my knowledge, they seem to have limited (erratic) success at best, for treating IBDs, and so far at least, I'm not aware of anyone who has been able use them successfully to treat MC.
So lets try to track down the problems so that you can get your life back. Are you taking any supplements (including any hormone supplements/treatments)? If so, what are they? Are you taking any medications other than Entocort EC?
Does the rest of your family continue to eat the foods (at home) to which you are sensitive? If so (and this is very important), do you (or anyone else) keep wheat flour in your house?
I'm not sure of all the changes that O3 treatment might have caused in your colon, but among other things, it has these effects:
1. Ozone stimulates the production of white blood cells.
2. Ozone causes a significant increase in Interferon levels.
3. Ozone stimulates the production of Tumor Necrosis Factor.
4. Ozone stimulates the secretion of IL-2.
Now all those virtues may sound great on the surface (they sound like disease-fighters. Right?) But guess what . . . What do all those parameters have in common? They are all pro-inflammatory agents. With LC, our gut is already inflamed. We don't need to boost any pro-inflammatory agents — we need to reduce them.
For example, LC is caused by (and diagnosed by measuring) an increase of lymphocytes (white blood cells) in the lining of the colon. As you know, I'm not a doctor, but IMO, that treatment amounted to supercharging your LC, and it may have kicked your LC all the way back to square one, for all I know. Whoever recommended that treatment clearly does not understand microscopic colitis.
Please, please, please don't attempt any more such treatments. Let's try to get you on track to a real recovery, by analyzing everything that you are eating, drinking, supplementing, etc. You have access to more true experts on microscopic colitis on this board than you will find anywhere else in the world. Please take advantage of all the knowledge and insight and experiences that they have gained from years of living with this disease. We're here for you, and we understand how you feel. So when you're hurting, we feel your pain, also.
Tex
I'm sorry you're having these problems. I realize that it may seem that the harder you try, the less success you have, and to some extent, that's true. There's nothing wrong with trying hard, because it takes hard, dedicated work to defeat this disease. But we have to focus our efforts on the methods that are known to work, otherwise it's too easy to undo all the good, and unravel all the progress that we've made. Here is my 2 cents worth:
Remember that when treating MC, less is much better than more. IOW, most of us are more successful at resolving our symptoms if we eat less variety (simple, bland food, made of a minimum number of safe ingredients), and of course we have to totally avoid our food sensitivities. We tend to recover much faster if we do our own cooking, because eating out is extremely risky, especially before we are in stable remission. Eating delicious, highly-seasoned meals may be a lot of fun, but by doing so, we usually postpone our recovery, especially if we do so routinely.
And especially, most of us definitely do better if we cut out all supplements (except for safe forms of vitamins D and B-12), rather than to take more supplements. Contrary to popular belief (especially by many naturopaths), adding all sorts of supplements to our diet and trying all sorts of (I'm tempted to say, "off the wall", but let's just say "unconventional") treatments, are not the path to fast and easy remission. Many, many, members here have had their recovery derailed unnecessarily by falling into such traps.
Please remember that just because other members are able to get away with eating certain foods, or taking certain supplements does not mean that anyone else can safely do that. We are all different, and some of us have to be much more careful than others. It also takes some of us much longer to heal than others. It took me a year and a half to reach remission, for example, plus another year and a half on a very strict diet in order to reach the point where I was able to successfully add any foods back into my diet.
Sure, everyone wants to get their life back ASAP, but unfortunately with this disease, there are no shortcuts, and there are no free passes. It's a cruel and unforgiving disease, and it's never going to give us a break just because we don't deserve to have the disease. None of us deserve to have it, but the disease doesn't care. And those who attempt shortcuts frequently end up starting over, frustrated and depressed over their apparent lack of progress.
Note that FMTs are very effective for bringing lasting remission from a C. diff infection, but to my knowledge, they seem to have limited (erratic) success at best, for treating IBDs, and so far at least, I'm not aware of anyone who has been able use them successfully to treat MC.
So lets try to track down the problems so that you can get your life back. Are you taking any supplements (including any hormone supplements/treatments)? If so, what are they? Are you taking any medications other than Entocort EC?
Does the rest of your family continue to eat the foods (at home) to which you are sensitive? If so (and this is very important), do you (or anyone else) keep wheat flour in your house?
I'm not sure of all the changes that O3 treatment might have caused in your colon, but among other things, it has these effects:
1. Ozone stimulates the production of white blood cells.
2. Ozone causes a significant increase in Interferon levels.
3. Ozone stimulates the production of Tumor Necrosis Factor.
4. Ozone stimulates the secretion of IL-2.
Now all those virtues may sound great on the surface (they sound like disease-fighters. Right?) But guess what . . . What do all those parameters have in common? They are all pro-inflammatory agents. With LC, our gut is already inflamed. We don't need to boost any pro-inflammatory agents — we need to reduce them.
For example, LC is caused by (and diagnosed by measuring) an increase of lymphocytes (white blood cells) in the lining of the colon. As you know, I'm not a doctor, but IMO, that treatment amounted to supercharging your LC, and it may have kicked your LC all the way back to square one, for all I know. Whoever recommended that treatment clearly does not understand microscopic colitis.
Please, please, please don't attempt any more such treatments. Let's try to get you on track to a real recovery, by analyzing everything that you are eating, drinking, supplementing, etc. You have access to more true experts on microscopic colitis on this board than you will find anywhere else in the world. Please take advantage of all the knowledge and insight and experiences that they have gained from years of living with this disease. We're here for you, and we understand how you feel. So when you're hurting, we feel your pain, also.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
Thanks for your response. I appreciate your input. I sincerely value the people and opinions on this board. I am definitely not doing anymore ozone treatments ever again.
My supplements/ medications include: Entocort, Synthroid, VSL #3, Ultimate Floramax 50 billion, Multi Vitamin, saccharomycin boulardii, LDN. I currently take a low dose of clonazepam (temporarily) to help with my anxiety. I have taken probiotics with success in the past so I don't think they're an issue.
I don't eat out. I avoid all foods to which I have tested sensitive. I eat very bland, basic foods, low glycemic index, avoid all raw fruits and veggies. I primarily eat chicken, rice, GF pasta, turkey meatballs, and avoid processed foods (besides the GF pasta and sometimes Chex cereal). I am G/F, S/F, D/F, Sugar/F, I limit Eggs (even though I didn't test sensitive to them). My diet has been very plain and boring since the first time I used Entocort in Aug. 2012. During my 7 months remission, I only ate meat, fish, well cooked veggies, no sugar, no grains (except kosher buckwheat pasta and puffed millet cereal). I have tried to get on the track to real recovery since day one. I don't expect a shortcut or free pass to healing; I've worked very hard towards remission. I have spent so much money trying to deal with this disease- from acupuncture, Gut and Psychology practitioner/diet, functional integrated MD. And, most importantly, I've not tried to derail my efforts by eating scrumptious or tempting 'no-no' foods. There is no wheat flour in my house. My family eats all organic produce and meats. All of my pots and pans are Gluten Free. We do not buy gluten, unless it is in the form of a snack pack that can be sent to camp/school with my daughter, whereby she is not consuming it in the house.
I really hope I'm not at square one with LC. When I was first Dx'd with LC I was going D 10x/day. It's not to that point, but the 2-3x I have D is not minimal in volume. I have horrible stress about the C.Diff experience. I really pray it is gone and stays gone. In your opinion, how often should I re-test for C.Diff (while experiencing D on the Entocort)?
I am grateful for the abundance of knowledge you have and share with this community. It is blessing to all of us dealing with MC issues.
Thanks for your response. I appreciate your input. I sincerely value the people and opinions on this board. I am definitely not doing anymore ozone treatments ever again.
My supplements/ medications include: Entocort, Synthroid, VSL #3, Ultimate Floramax 50 billion, Multi Vitamin, saccharomycin boulardii, LDN. I currently take a low dose of clonazepam (temporarily) to help with my anxiety. I have taken probiotics with success in the past so I don't think they're an issue.
I don't eat out. I avoid all foods to which I have tested sensitive. I eat very bland, basic foods, low glycemic index, avoid all raw fruits and veggies. I primarily eat chicken, rice, GF pasta, turkey meatballs, and avoid processed foods (besides the GF pasta and sometimes Chex cereal). I am G/F, S/F, D/F, Sugar/F, I limit Eggs (even though I didn't test sensitive to them). My diet has been very plain and boring since the first time I used Entocort in Aug. 2012. During my 7 months remission, I only ate meat, fish, well cooked veggies, no sugar, no grains (except kosher buckwheat pasta and puffed millet cereal). I have tried to get on the track to real recovery since day one. I don't expect a shortcut or free pass to healing; I've worked very hard towards remission. I have spent so much money trying to deal with this disease- from acupuncture, Gut and Psychology practitioner/diet, functional integrated MD. And, most importantly, I've not tried to derail my efforts by eating scrumptious or tempting 'no-no' foods. There is no wheat flour in my house. My family eats all organic produce and meats. All of my pots and pans are Gluten Free. We do not buy gluten, unless it is in the form of a snack pack that can be sent to camp/school with my daughter, whereby she is not consuming it in the house.
I really hope I'm not at square one with LC. When I was first Dx'd with LC I was going D 10x/day. It's not to that point, but the 2-3x I have D is not minimal in volume. I have horrible stress about the C.Diff experience. I really pray it is gone and stays gone. In your opinion, how often should I re-test for C.Diff (while experiencing D on the Entocort)?
I am grateful for the abundance of knowledge you have and share with this community. It is blessing to all of us dealing with MC issues.
Marie and Eric,
Normally I would be suspicious of any probiotics, but in view of your recent ordeal with C. diff, it might be a good idea to continue taking a probiotic, at least for a while longer. I get the impression that the success rate for treating C. diff (and obtaining lasting relief from the possibility of reinfection) with FMT is very high, so C. diff should be out of your life for good, at this point.
I looked for your food sensitivity test results in our list earlier, and didn't find them, but I'm going to assume that the tests were done at EnteroLab, and the results are therefore reliable. Some of us can't tolerate buckwheat, and I believe a few members are also sensitive to millet, so you may need to test those at some point to be sure that they are safe in your diet.
Do you happen to have a copy of the July 1 pathology report from the analysis of the biopsy samples? Specifically, I'm wondering just how high your actual lymphocyte count might have been on each of the 4 samples. Some pathologists don't actually report numbers, instead they just note whether the count exceeded the minimum required for a positive diagnosis of LC (20 lymphocytes per 100 enterocytes).
C. diff infections are notorious for being missed by culture tests, and it's not uncommon for a second or even a third culture test to be necessary in order to confirm an infection, so it certainly wouldn't be a bad idea to ask for 1 or 2 followup tests, just in case the first result was a false negative. I'm not suggesting that the test you had was not correct, I'm just saying that we can't be too careful when it comes to a C. diff infection, and we want to be absolutely sure that it's gone.
Surely all of your progress hasn't been undone at this point. One of the problems with this disease is that it doesn't like to provide us with reliable clues on our progress. Most of the time, when we are in a flare, we can't tell if we are 6 months away from remission, or 1 day away, and that makes it tough to see any encouraging signs during our recovery.
Please be aware that some women are unable to achieve remission if they are taking an oral or a transdermal contraceptive, or oral or transdermal HRT.
If we keep the communication lines open, and enough of us here put our heads together, surely we can figure out what's going on, and find some solutions.
Tex
Normally I would be suspicious of any probiotics, but in view of your recent ordeal with C. diff, it might be a good idea to continue taking a probiotic, at least for a while longer. I get the impression that the success rate for treating C. diff (and obtaining lasting relief from the possibility of reinfection) with FMT is very high, so C. diff should be out of your life for good, at this point.
I looked for your food sensitivity test results in our list earlier, and didn't find them, but I'm going to assume that the tests were done at EnteroLab, and the results are therefore reliable. Some of us can't tolerate buckwheat, and I believe a few members are also sensitive to millet, so you may need to test those at some point to be sure that they are safe in your diet.
Do you happen to have a copy of the July 1 pathology report from the analysis of the biopsy samples? Specifically, I'm wondering just how high your actual lymphocyte count might have been on each of the 4 samples. Some pathologists don't actually report numbers, instead they just note whether the count exceeded the minimum required for a positive diagnosis of LC (20 lymphocytes per 100 enterocytes).
C. diff infections are notorious for being missed by culture tests, and it's not uncommon for a second or even a third culture test to be necessary in order to confirm an infection, so it certainly wouldn't be a bad idea to ask for 1 or 2 followup tests, just in case the first result was a false negative. I'm not suggesting that the test you had was not correct, I'm just saying that we can't be too careful when it comes to a C. diff infection, and we want to be absolutely sure that it's gone.
Surely all of your progress hasn't been undone at this point. One of the problems with this disease is that it doesn't like to provide us with reliable clues on our progress. Most of the time, when we are in a flare, we can't tell if we are 6 months away from remission, or 1 day away, and that makes it tough to see any encouraging signs during our recovery.
Please be aware that some women are unable to achieve remission if they are taking an oral or a transdermal contraceptive, or oral or transdermal HRT.
If we keep the communication lines open, and enough of us here put our heads together, surely we can figure out what's going on, and find some solutions.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hey Tex!
Thanks for the encouragement. We haven't received the pathology report yet but the GI informed us verbally that there were plenty of lymphocytes. I'll be sure to post results when I do receive the report.
I did the Enterolab test last year. I just emailed you those results.
The C.Diff toxins A&B test and PCR test, both completed last week, came back negative. I do continue to have D, however (approx. 3x/day). I'm freaked about the possibility of it even slightly being C.Diff so I did yet another toxins test this week. I realize the PCR/LAMP tests are most accurate but it was like pulling teeth to get my insurance to cover the PCR. Lab Corp is my in-network lab and for whatever reason they do not offer PCR (that I am aware). So, I had it done through Quest Diagnostics. Had insurance not approved it as medically necessary it would have cost $445 out of pocket. I'm not sure how often I need to PCR re-test or if insurance would even cover it again? I'd love to test every week for piece of mind. Would you suggest that I keep insisting on testing and testing each week or no need?
I'm not on any form of contraception or HRT. It's good to be aware of that information though, so thank you.
I do have underlying/undertreated thyroid and adrenal issues occurring. I'm scheduled to see a specialist for that next week. Could those affect the digestive tract or remission? My husband is convinced that it could indeed.
Once again, so grateful for your help!
Thanks for the encouragement. We haven't received the pathology report yet but the GI informed us verbally that there were plenty of lymphocytes. I'll be sure to post results when I do receive the report.
I did the Enterolab test last year. I just emailed you those results.
The C.Diff toxins A&B test and PCR test, both completed last week, came back negative. I do continue to have D, however (approx. 3x/day). I'm freaked about the possibility of it even slightly being C.Diff so I did yet another toxins test this week. I realize the PCR/LAMP tests are most accurate but it was like pulling teeth to get my insurance to cover the PCR. Lab Corp is my in-network lab and for whatever reason they do not offer PCR (that I am aware). So, I had it done through Quest Diagnostics. Had insurance not approved it as medically necessary it would have cost $445 out of pocket. I'm not sure how often I need to PCR re-test or if insurance would even cover it again? I'd love to test every week for piece of mind. Would you suggest that I keep insisting on testing and testing each week or no need?
I'm not on any form of contraception or HRT. It's good to be aware of that information though, so thank you.
I do have underlying/undertreated thyroid and adrenal issues occurring. I'm scheduled to see a specialist for that next week. Could those affect the digestive tract or remission? My husband is convinced that it could indeed.
Once again, so grateful for your help!
-
UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Marie,
I am fairly new here but wanted to tell you that it took more than two weeks on 9mg of entocort for me to have positive results, even as I was eating GF/SF/DF for almost a month. I am still eating eggs, corn, rice and mushy vegetables as well as some fruit. Its probably still a minefield as I am waiting for my enterolab results.
I have had autoimmune problems in the past that required steroids for me to get back to what my allergist calls "baseline". Sometimes my allergies would get really out of hand and I need the steroid to bring me back down. I'm speaking about asthma and poison oak reactions that would only worse and worsen w/o steroid intervention.
The MC (cc) is a new factor but given my autoimmune response, I don't think I could have gotten to where I am now without steroids even if I knew what my safe foods are and had been only eating those.
Anyway, I hope you are better soon and I wish you the best.
Sincerely,
Nancy
I am fairly new here but wanted to tell you that it took more than two weeks on 9mg of entocort for me to have positive results, even as I was eating GF/SF/DF for almost a month. I am still eating eggs, corn, rice and mushy vegetables as well as some fruit. Its probably still a minefield as I am waiting for my enterolab results.
I have had autoimmune problems in the past that required steroids for me to get back to what my allergist calls "baseline". Sometimes my allergies would get really out of hand and I need the steroid to bring me back down. I'm speaking about asthma and poison oak reactions that would only worse and worsen w/o steroid intervention.
The MC (cc) is a new factor but given my autoimmune response, I don't think I could have gotten to where I am now without steroids even if I knew what my safe foods are and had been only eating those.
Anyway, I hope you are better soon and I wish you the best.
Sincerely,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Marie,
Unless you begin to notice blood in the stool, you should be able to relax about the C. diff, and stop retesting. Most people have to make more than 3 trips to the bathroom if they have a C. diff infection. The D is probably due to the inflammation associated with the elevated lymphocyte count.
Tex
Unless you begin to notice blood in the stool, you should be able to relax about the C. diff, and stop retesting. Most people have to make more than 3 trips to the bathroom if they have a C. diff infection. The D is probably due to the inflammation associated with the elevated lymphocyte count.
Normally, untreated or under-treated hypothyroidism tends to cause C, rather than D. D is a typical symptom of an overactive thyroid. However, that's not chiseled in stone, and especially if you should have nodules on your thyroid, and/or you produce thyroid antibodies, all bets are off, and symptoms can be erratic. I'm not sure what the effect of adrenal problems would be on the gut, but I would suspect that if your HPA axis gets out of balance, that can also knock things out of balance in your digestive system.Marie wrote:I do have underlying/undertreated thyroid and adrenal issues occurring. I'm scheduled to see a specialist for that next week. Could those affect the digestive tract or remission? My husband is convinced that it could indeed.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Marie, hope you are feeling better soon! Sounds like you're going through a pretty rough patch.
I cannot think of anyone's advice I would trust more than Tex, and am so grateful for him and everyone else on this forum. He is so correct in saying we have real experts in dealing with MC here. Don't know if I would have ever been able to figure things out without this site!
Jean
I cannot think of anyone's advice I would trust more than Tex, and am so grateful for him and everyone else on this forum. He is so correct in saying we have real experts in dealing with MC here. Don't know if I would have ever been able to figure things out without this site!
Jean
"The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not." Mark Twain
Marie,
I posted this in another thread, from an article about adrenal dysfunction:
I posted this in another thread, from an article about adrenal dysfunction:
One of the most important things that cortisol does is regulating secretory IgA in your gut. What this means is that the immune response in your gut is controlled by cortisol. Hence, if you’re stressed, the immune response in your gut suffers, the gut tissue becomes damaged, and good bacteria give way to bad bacteria, causing immune dysregulation that is centered in and around your gut.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzle, that is very interesting! It makes me glad that I will be seeing someone about my adrenals next week. Ever since my pregnancies (2007, then 2011), I feel that my hormones majorly changed, including the functioning of my thyroid & adrenals. Pregnancy was stressful for me, some people love it, but I wasn't crazy about it. 
Ukelelelady and JeanIrene- thanks for the support!
Tex- I did have an ultrasound done on my thyroid. I have Hashimotos thyroiditis which does produce antibodies. My ultrasound was abnormal. One lobe was larger than the other and I have a benign nodule. I will see if I can find the exact results. I can remember the technician saying that my thyroid does not look textbook.
How do you test to see if your HPA is off? My acupuncturist said it was off but are there formal tests I should get done? Thanks!!!
Ukelelelady and JeanIrene- thanks for the support!
Tex- I did have an ultrasound done on my thyroid. I have Hashimotos thyroiditis which does produce antibodies. My ultrasound was abnormal. One lobe was larger than the other and I have a benign nodule. I will see if I can find the exact results. I can remember the technician saying that my thyroid does not look textbook.
How do you test to see if your HPA is off? My acupuncturist said it was off but are there formal tests I should get done? Thanks!!!
Marie, I don't have any advice to offer but can empathize with your frustration. I've spent thousands on a variety of treatments and a ton of supplements. Nothing has helped but the less is more method that Tex explained. I've had many set backs doing things I thought were good for me. I hope you are able to find more answers soon.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Marie, I am so sorry to hear you struggling with MC. But I can tell you from experience that what Tex is saying is so so true! Less is better when you eat! I was in remission for a long time because I stuck with what I knew my stomach could handle. Then I decided to venture out an broaden my horizon and try to introduce new foods into my life. That did not work, at all. With in a month I started with the big "D" again. I have finally come to realize its just not worth eating out or putting anything in that's new! My stomach just can not handle it anymore! I also had to watch all the supplements that I was taking. Even though the label says it GF, LF, SF find out if it was made in a factory where gluten, lactose and soy are present. Because the cross contamination is very deadly for me. Some manufactures don't even say it on the label you have to research for your self. Since you have already achieved being in remission for awhile I would recommend you look back at that time and try and figure out what has changed for you. I really do hope you feel better soon. I know it must be difficult with small children in the house. Good luck! Tomorrow will be a better day!
Robin
Robin
Marie,
The Hashimoto's of course is associated with hypothyroidism, whereas nodules are typically associated with hyperthyroidism, because nodules can produce thyroid hormone independently of the gland itself, and since that production is not affected by the negative feedback that normally attenuates thyroid hormone production by the thyroid itself, this can result in erratic thyroid hormone levels.
Are you familiar with the way that the hypothalmic-pituitary-adrenal (HPA) axis, and/or the hypothalmic-pituitary-thyroid (HPT) axis work?
In a nutshell, the hypothalamus produces vasopressin and corticotropin-releasing hormone (CRH), and these two peptides regulate how much ACTH the pituitary gland produces. ACTH stimulates the adrenal cortex to produce cortisol and other glucocorticoids. As the levels of cortisol and other glucocorticoids in circulation in the blood rise, they provide feedback to the hypothalamus and pituitary to suppress CRH, vasopressin, and ACTH production, which in turn prompts the adrenals to throttle back their cortisol output.
By a similar process, when the hypothalamus detects low levels of thyroid hormone (T3 and T4) in the blood, it releases thyrotropin-releasing hormone (TRH), which stimulates the pituitary to produce thyroid-stimulating hormone (TSH). The TSH of course stimulates the thyroid to produce thyroid hormone (T3 and T4). As blood levels of thyroid hormone reach normal levels, the thyroid hormone in circulation provides feedback to both the hypothalamus and pituitary to suppress the production of TRH and TSH respectively, which in turn prompts the thyroid to throttle down it's production of thyroid hormone.
And when everything is performing normally, with both systems, things go smoothly. But the Hashimoto's and any thyroid nodules can easily knock the HPT axis out of balance. If you want to pursue an investigation of your (HPA) axis, or (HPT) axis, you're going to need the help of a good endocrinologist, or at least an experienced internist who's familiar with the way these organs work.
An experienced clinician can test the output levels of these organs to isolate any abnormalities, and track down the cause.
And I agree with Robin of course. I find that as time has passed I've been able to add some foods into my diet, but I have also found it necessary to remove others. I rarely try anything new anymore, either. As she says, it just isn't worth the aggravation. Long ingredient lists are minefields for most of us.
Tex
The Hashimoto's of course is associated with hypothyroidism, whereas nodules are typically associated with hyperthyroidism, because nodules can produce thyroid hormone independently of the gland itself, and since that production is not affected by the negative feedback that normally attenuates thyroid hormone production by the thyroid itself, this can result in erratic thyroid hormone levels.
Are you familiar with the way that the hypothalmic-pituitary-adrenal (HPA) axis, and/or the hypothalmic-pituitary-thyroid (HPT) axis work?
In a nutshell, the hypothalamus produces vasopressin and corticotropin-releasing hormone (CRH), and these two peptides regulate how much ACTH the pituitary gland produces. ACTH stimulates the adrenal cortex to produce cortisol and other glucocorticoids. As the levels of cortisol and other glucocorticoids in circulation in the blood rise, they provide feedback to the hypothalamus and pituitary to suppress CRH, vasopressin, and ACTH production, which in turn prompts the adrenals to throttle back their cortisol output.
By a similar process, when the hypothalamus detects low levels of thyroid hormone (T3 and T4) in the blood, it releases thyrotropin-releasing hormone (TRH), which stimulates the pituitary to produce thyroid-stimulating hormone (TSH). The TSH of course stimulates the thyroid to produce thyroid hormone (T3 and T4). As blood levels of thyroid hormone reach normal levels, the thyroid hormone in circulation provides feedback to both the hypothalamus and pituitary to suppress the production of TRH and TSH respectively, which in turn prompts the thyroid to throttle down it's production of thyroid hormone.
And when everything is performing normally, with both systems, things go smoothly. But the Hashimoto's and any thyroid nodules can easily knock the HPT axis out of balance. If you want to pursue an investigation of your (HPA) axis, or (HPT) axis, you're going to need the help of a good endocrinologist, or at least an experienced internist who's familiar with the way these organs work.
An experienced clinician can test the output levels of these organs to isolate any abnormalities, and track down the cause.
And I agree with Robin of course. I find that as time has passed I've been able to add some foods into my diet, but I have also found it necessary to remove others. I rarely try anything new anymore, either. As she says, it just isn't worth the aggravation. Long ingredient lists are minefields for most of us.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.