Adrenal Issues combined with all endocrine issues -- which came first, the chicken or the egg?!
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KnitOrMiss
Posts: 10,104 Member
This conversation started in another thread, but rather than hijack that thread, continuing it here, in case anyone wants to follow:
Original Message and Response:
@cstehansen
I find this fascinating. I would imagine that my testing arc would be similar to yours, though shifted lower in the spectrum. With a normal meal, I don't generally spike above 120 that I've noticed... But I've not tested with straight glucose in any form, either. I do know that any spikes and drops I've got going on still are in that same threshold - the 30-90 minute range, and not consistent, and I've started considering that I ALREADY have a type of diabetes that isn't commonly diagnosed or something. I do have IR per tests, but I have done higher level tests, not the detailed ones you have, But my fasting glucose is in the 80-90 range, and my A1C is 5.3%, give or take, so I'm pre-diabetes, based on the IR alone, and the the A1c is in the danger zone for risk factor.
I might talk about this more to my Endo when I go back in October, but I can't afford a meter or testing supplies currently, so no experimenting presently.
TANGENTIALLY RELATED -- However, I've been experimenting around, too, again, and my thyroid dysfunction seems to be the RESULT of adrenal/cortisol issues (with which I was diagnosed first), but have remained under the radar since then because of no red flag results, whereas my thyroid got bad enough for medication and I've finally gotten level with it... I've done screenings for "initial diagnoses" that seem to point to adrenals being the source of my issues, but my endo tested the ones he was worried about, to no avail...all acceptable results. So I'm at a loss for how to proceed in researching.
Any suggestions?
I'll keep following this in case you repeat this experiment and get more info.
Original Message and Response:
cstehansen wrote: »I have posted some of my n=1 experiments here as I have tried to understand my high blood glucose as I have not responded or had very minimal response to pretty much every intervention I can find. I think I may have figured out why, so I decided to test.
As background, I am not, nor have I ever been significantly overweight. At my heaviest, I briefly hit 220. At 6'1" and a 30+ year weight lifter, that still had me at only a 34 inch waist and frequently being called "thin" by people I worked with. I was diagnosed as T2 3 years ago after I had decided to back off the weights a bit and lean out. At the time, I was between 195-200 with bf % of 17-18%. My A1c was not super high at 6.6, but high enough to be classified as diabetic.
Eating keto/LCHF keeps my A1c around 6.1 and also put me down closer to 180-185 and 14% bf. My fasting BG has not really changed at all through this whole process staying in the 115-120 range for the most part. I think the drop in A1c is just a product of not having any post meal spikes.
Fast forward nearly 3 years and I was pointed in the direction of an article on MODY2 (AKA GCK-MODY). Because MODY stands for Mature Onset Diabetes of the Young and the first article I saw indicated it was diagnosed only under age 25, I did not pursue that research long ago.
However, after much more extensive research and finding there are at least 7 variations of MODY, I found it very well may be what I have. Although MODY is not common, it is almost always misdiagnosed as either T1 or T2 depending on which variation it is. MODY2 is the second most common. One of the first things about it that really made it sound like a fit was a chart showing how the average A1c for someone like this goes on a slightly upward trajectory just like someone without diabetes, but about a point higher. See chart below:
This looks like a perfect fit, not just for me, but for my dad and his dad who both were diagnosed as pre-diabetic, but never were overweight, were quite fit and never progressed to diabetic.
In going through the research, the dominant factor of MODY2 is a higher set point for FBG. The insulin response is fine and there is no insulin resistance. Again, I have several different tests showing I am not IR and I process both fructose and glucose better than average.
To go along with this, the curve for an oral glucose tolerance test for someone with MODY2 should follow a curve similar to that of a healthy non-diabetic person but possibly just a bit higher. Here is where my self-experimentation came into play.
I bought some glucose tabs from the pharmacy. Each one is 4 g of glucose, so I took 19 of them (76 g total) to come as close as possible to matching the 75 g used in the OGTT by doctors. I put them in my Ninja and ground them to powder, added water and blended until it was well dissolved. I decided to test BG every 15 minutes. On many of the readings, I would take multiple readings to make sure I got the best possible data. If there was much variance between the two, I would do a third and take the middle one. There was only a large discrepancy 1 time.
For the test, you are supposed to fast for at least 8 hours but preferably less than 14, so I fasted for just over 11. My results:
pre-test - 117
15 min - 149
30 min - 179
45 min - 263
60 min - 288
75 min - 226
90 min - 196
105 min - 128
120 min - 99
Since a reading below 140 is supposedly non-diabetic, this would indicate I am not diabetic despite my high FBG and my 6.1 A1c. For grins, I kept checking every 15 minutes for the 3rd hour:
135 min - 79
150 min - 73
165 min - 77
180 min - 86
So, it kept going down until about 2.5 hours and then started rebounding back up. I didn't keep going because it was lunchtime and I had some really awesome left over smoked brisket calling my name, but based on all my previous experiments, I am fairly certain within an hour or so, I would have been back to hovering around 100-105.
Supposedly, around 2-4% of people diagnosed as T2 are actually MODY. This is not a high percentage, but given how many thousands of members we have on in this group and the number of them diagnosed as T2, I would think the odds are we have some here.
@midwesterner85 and @RalfLott - I would be interested in your takes if you don't mind this really long post.
@cstehansen
I find this fascinating. I would imagine that my testing arc would be similar to yours, though shifted lower in the spectrum. With a normal meal, I don't generally spike above 120 that I've noticed... But I've not tested with straight glucose in any form, either. I do know that any spikes and drops I've got going on still are in that same threshold - the 30-90 minute range, and not consistent, and I've started considering that I ALREADY have a type of diabetes that isn't commonly diagnosed or something. I do have IR per tests, but I have done higher level tests, not the detailed ones you have, But my fasting glucose is in the 80-90 range, and my A1C is 5.3%, give or take, so I'm pre-diabetes, based on the IR alone, and the the A1c is in the danger zone for risk factor.
I might talk about this more to my Endo when I go back in October, but I can't afford a meter or testing supplies currently, so no experimenting presently.
TANGENTIALLY RELATED -- However, I've been experimenting around, too, again, and my thyroid dysfunction seems to be the RESULT of adrenal/cortisol issues (with which I was diagnosed first), but have remained under the radar since then because of no red flag results, whereas my thyroid got bad enough for medication and I've finally gotten level with it... I've done screenings for "initial diagnoses" that seem to point to adrenals being the source of my issues, but my endo tested the ones he was worried about, to no avail...all acceptable results. So I'm at a loss for how to proceed in researching.
Any suggestions?
I'll keep following this in case you repeat this experiment and get more info.
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Response following, and response to it.tcunbeliever wrote: »I treat adrenal issues with Licorice Root (assuming normal or low blood pressure) or Nervous Fatigue TCM (for high blood pressure).
These are just nutritional support for the adrenal system, not adrenal stimulants. Generally the adrenals are already overstimulated (most commonly by stress) and most diets lack the nutrients the adrenals need to recover from chronic stimulation.
@tcunbeliever - I have high blood pressure, treated, very balanced now. I was using a supplement for Liver Function that had Licorice Root in it, and I hated it because sometimes I could taste it as my body broke it down. I'll look into the other option, though...
I was diagnosed with full-onset of Adrenal Fatigue with non-existent progesterone levels back in 2006-2007. Was treating for fertility reasons, but could not get progesterone levels up, due to body stealing it and converting it to whatever else was needed. I was taking the Adrenal support supplement system from Dr. Wilson back then, but nothing seemed to be helping, so I think in 2009 or so, I stopped everything.
Eventually diagnosed with hypothyroidism (somewhere in the 2008-2011 range, then again in 2013) and PCOS (2011 was "confirmed medically" but not informed by doctor until 2015). Adrenals further tested, but nothing jumped out at doc. High AM Cortisol (over limit), but suppression test came back okay...and other stuff...don't remember what all...but nothing advised other than don't skip meals. (Still little to no verifiable adrenaline function - can get the "daylights scared out of me" and no adrenaline boost, etc.). I'm such a confusing puzzle...0 -
I've read that the adrenals need vitamins B5 and C to work well.1
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Hopping in to say HI! KnitOrMiss! missed your comments the past while - hope you are hanging in there.
OK, hopping out now.1 -
Dr Wilson's Adrenal Support is eleuthero, ashwagandha, maca, and licorice - assuming it's the same now as it was back then.
Nervous Fatigue is a Traditional Chinese Medicine (TCM) blend - I usually buy it from Nature's Sunshine, but any decent herb shop should have it and they should all be basically the same - Schisandra fruit, biota seed, cistanche stem, cuscuta seed, lycium fruit, ophiopogon root tuber, succinum amber, tang-kuei root, acorus rhizome, astragalus root, dioscorea rhizome, hoelen sclerotium, lotus seed, ginseng root, polygala root, polygonatum rhizome, jujuba seed and rehmannia root tuber.
You should definitely not take licorice if you have high blood pressure, in some people it can cause an increase in BP and it's just not worth the risk.
It's very common for adrenal issues to cause thyroid problems. The thyroid will try to step in where the adrenals fail to perform and just wear itself out because it's not really meant to do that job and it's own...definitely try to eat plenty of thyroid supporting foods and maybe some thyroid supporting supplements, but I would avoid anything that is thyroid stimulating because it's probably working too hard already.
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tcunbeliever wrote: »Dr Wilson's Adrenal Support is eleuthero, ashwagandha, maca, and licorice - assuming it's the same now as it was back then.
Nervous Fatigue is a Traditional Chinese Medicine (TCM) blend - I usually buy it from Nature's Sunshine, but any decent herb shop should have it and they should all be basically the same - Schisandra fruit, biota seed, cistanche stem, cuscuta seed, lycium fruit, ophiopogon root tuber, succinum amber, tang-kuei root, acorus rhizome, astragalus root, dioscorea rhizome, hoelen sclerotium, lotus seed, ginseng root, polygala root, polygonatum rhizome, jujuba seed and rehmannia root tuber.
You should definitely not take licorice if you have high blood pressure, in some people it can cause an increase in BP and it's just not worth the risk.
It's very common for adrenal issues to cause thyroid problems. The thyroid will try to step in where the adrenals fail to perform and just wear itself out because it's not really meant to do that job and it's own...definitely try to eat plenty of thyroid supporting foods and maybe some thyroid supporting supplements, but I would avoid anything that is thyroid stimulating because it's probably working too hard already.
@tcunbeliever
The problem I find with all thyroid supplements is that they're all a mess. They cause me to be a mess. I can't afford them individually, but together there's usually too much of something or a single ingredient that causes my body to go haywire.
Chromium causes me to have blood sugar crashes. Badly.
Ashwagandha, no matter the doses, seems to have no effect.
Guggal made me feel weird.
Maca is GROSS - I have an entire package of Organic Maca Root Powder I cna't use...
and my thyroid formula had so much of both types of B5 that it interfered with my B-Complex (because it didn't have enough of the other B's to drop the Complex) that I got itchy and burning hands and feet that kept me from functioning and sleeping (some kind of B toxicity that when I dropped the supplement went away 100%).
I don't know most of those in the TCM blend you mention...but I'm willing to try just about anything (cost is a big factor right now, so I'm going to have to do some research). I know that the improvements of getting on NDT for my thyroid and actually getting a decent dose have made HUGE DIFFERENCES, but still not getting me (back?) to optimal yet with all the other factors.
And I will say that with the Adrenal stuff before, I felt like I was making expensive pee. I don't remember ever feeling better or improving, definitely not enough to justify the obscene costs. The habit of being hopeful and taking pills on a schedule made me "mentally feel better" but I don't remember ever having true symptom relief or even ease, and I never conceived again (not even miscarriages, just never conceived again). I think that's why I just eventually fizzled out and stopped buying the supplements. It's honestly been long enough now that I just don't remember the details clearly. Although, I guess something did improve, because for a long time I wasn't ovulating at all that I could tell, and then when my daughter started the hormonal cycles, her hormones either woke mine up or corralled mine/reset mine to where I did start again, as that's around the time I started really feeling the rupturing of ovarian cysts cyclically.
I know that my PCP was convinced I had a thyroid issue (couldn't lose weight, fatigued all the time, never felt better, needed salt/sugar to keep going, infertile, etc.), but the TSH wouldn't come back over 4, which was the threshold for hypothyroidism that she'd been trained with (she now knows that 2 is really a better threshold, which I've never been under, to date, that I recall, except MAYBE on my current medication dose)...but when the TSH wasn't coming back what she expected, she did some other kinds of tests (I know I did some saliva stuff, some blood stuff) that showed my non-existent levels of progesterone (as I think I said, i was trying to have another baby and not on BCP or anything, had severe secondary infertility), and some other stuff that lead us to Adrenal Fatigue, which is still hotly debated whether it's real.
But when I realized that I stopped feeling what adrenaline felt like, even if serious "fight or flight" situations, it scared me. It still does. Because it means I know that something is still massively off - and it worries me about surviving in a true crisis, should I ever be faced with one...
With the medications I'm taking, I'm functional. I'm not gaining weight without cause. I'm not losing either. But I'm kind of in a stasis. I just know I can be better. I can feel better. I have a faint dream of remembering what that feels like. I just know that the tests I've taken to date don't show a clear answer or even direction of travel/path to figuring it out. I also know that there is a huge difference between problem and low functioning and sub-optimal, etc.
And I've gone back, in the last 6 months to feeling lost and hopeless again. Because while I KNOW that holding steady is a blessing right now, since I'm not actively doing anything remotely healthy (LOL), I still just feel like I'm never going to find something that helps me help myself....1 -
And I know this is strange, but I can really still go back and clearly see the sequence of events that lead up to me feeling so run down and just ... PBBT.
I miscarried right before I conceived my daughter, so my entire pregnancy was considered high risk despite being hugely uneventful (and that was after nearly 18 months trying to conceive and before that was reconciling from an affair). I was pregnant (8.5 months along) and found out my company had been sold. I wasn't going to have a job either while I was on maternity leave or once I came back. I had no idea on how to be a parent. Had a stressful labor/delivery and was traumatically injured (not massive/life-threatening injury, just lifelong consequences). Recovery was slow, had my gallbladder removed at 7 weeks postpartum - I never lost weight after her birth. I just gained...and a lot (was 200 pounds 9 months pregnant in labor...was 225 within a few months of her birth). At 4 months old, my daughter had RSV the week we were moving from apartment to house. I had a bout of depression/anxiety from getting laid off from a job I loved plus having a baby, and such. No real support because I was breastfeeding, and unwilling to give up that "dream" to take meds for something that might not even help (so thankful really, now, since she ended up being my only child). My now ex-husband was unemployed off and on, as was I, temporary jobs I hated, family drama, etc. -- so perpetual financial, physical, emotional, etc. stress. Unending and overwhelming stress. Went back to work when kid was 8-9 months old (but as a temp, no job security, etc.). Around when she was 18 months old, mental stuff peaked and got on the diagnosis train that took more than a decade to really figure out...and so on. All kinds of mental misdiagnosis for what was eventually deemed not mental at all, but physical/chemical (more level now, but no 100% diagnosis or treatment).
I know that for everyone, pregnancy is taxing on the body, but I think that my life situation and my physical situation literally drained ALL of my resources and left me with nothing. Biology kept me going until medical intervention could start to help. And I can honestly say that I'm still not anywhere close to where I was before all of that. I'm far better than I have been...and it's sad that misery makes any progress feel monumental...but I still feel like feeling better/level/normal is some kind of twisted fairy tale.3 -
@KnitOrMiss have ever considered doing something like the WHOLE30 diet or a Low Histamine Diet? My husband's adrenals stopped producing enough cortisol and he was put on Hydrocortisone and diagnosed with Addison's Disease 2+ years ago. He is now working with a doctor who believes he does not have Addison's but his body is burning through his cortisol too fast. My husband was instructed to do a Low Histamine diet for 4 weeks to see if it made any changes, surprisingly after only a few days he started feeling better and after a 2 weeks he said he hasn't felt this good in years. He's been able to lower his hydrocortisone from 130mg to 85mg daily, we are still working on lowering it but with summer heat and allergy season is making it harder. Anyways, he's been seeing a Endo, a Men's health Specialist, a Naturopathic doctor, and GP. We are still searching for answers but the low histamine diet has brought us so much closer to finding out what is truly going on with his body.1
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MariahMichaels wrote: »@KnitOrMiss have ever considered doing something like the WHOLE30 diet or a Low Histamine Diet? My husband's adrenals stopped producing enough cortisol and he was put on Hydrocortisone and diagnosed with Addison's Disease 2+ years ago. He is now working with a doctor who believes he does not have Addison's but his body is burning through his cortisol too fast. My husband was instructed to do a Low Histamine diet for 4 weeks to see if it made any changes, surprisingly after only a few days he started feeling better and after a 2 weeks he said he hasn't felt this good in years. He's been able to lower his hydrocortisone from 130mg to 85mg daily, we are still working on lowering it but with summer heat and allergy season is making it harder. Anyways, he's been seeing a Endo, a Men's health Specialist, a Naturopathic doctor, and GP. We are still searching for answers but the low histamine diet has brought us so much closer to finding out what is truly going on with his body.
Honestly, it's mainly about funds. I cannot afford to eat a Whole30 diet. Flat out, full stop. I'm talking a beans and rice survival budget at the moment. @MariahMichaels I swear, sometimes I think there is almost nothing worth than trying to get healthy and being unable to afford medical appointments, decent vitamins, good food, and such.
Then, after that, it comes to my binge and compulsive eating issues. The further I restrict, the more I binge. I've done okay-ish in the past on keto, but I can't handle the acidic bile loose stools. Having no gallbladder and being on digestive enzymes minimize it, but really the only way I can have "normal" stools is to have enough starches to provide substance. I have to avoid lowering my carbs too much - and I have to avoid nearly all raw greens. Auto-dumping is horrible.
When I was keto, I made good progress for 3 months, then spent the next 15 months in a holding pattern, experimenting, and such.
After that time, I uncovered a number of issues, needing digestive enzymes, low D3, low B12, low iron (still can't find a way to bring this up, no matter what combo of things I use), low zinc, low boron, low magnesium, and so on. I've managed to bring most of these up to at least the low end of acceptable ranges, and massively improved some of them...but I still don't feel great.
Any time I lower my carbs, within a few hours, I'm back to bathroom drama.
As for histamines, I dropped all fermented foods (was brewing kombucha and eating sauerkraut, etc.), as I started getting ocular migraines. But I can't drop leftovers. I know they are a breeding ground for histamines. I have to batch cook just to get any sleep on most days. And being broke means we home cook nearly all meals. I haven't specifically researched low histamine diets, but I know that this is a breaking issue, with the leftovers issue. However, after dropping the fermented foods, and being picky about my tea brands, I've not suffered a single migraine. Maybe I'll look and see if I can phase out anything else...1 -
Sadly, a truly low histamine diet is well beyond my means, also. I'd have to eliminate 75% or more of my current available food list, and I simply can't do that. I'd probably have an easier time doing and extended fast, which I also can't do due to constant bile trickling...
Thanks for the thoughts, though. I think I will ask for the blood test that helps tell this...
And within 3-5 days of stopping my Zyrtect, I'd have a perpetual sinus infection due to my year round nasal allergies, so really, I understand that it might be a factor, I just can't justify it...
Thank you for the suggestions, though.0 -
KnitOrMiss wrote: »MariahMichaels wrote: »@KnitOrMiss have ever considered doing something like the WHOLE30 diet or a Low Histamine Diet? My husband's adrenals stopped producing enough cortisol and he was put on Hydrocortisone and diagnosed with Addison's Disease 2+ years ago. He is now working with a doctor who believes he does not have Addison's but his body is burning through his cortisol too fast. My husband was instructed to do a Low Histamine diet for 4 weeks to see if it made any changes, surprisingly after only a few days he started feeling better and after a 2 weeks he said he hasn't felt this good in years. He's been able to lower his hydrocortisone from 130mg to 85mg daily, we are still working on lowering it but with summer heat and allergy season is making it harder. Anyways, he's been seeing a Endo, a Men's health Specialist, a Naturopathic doctor, and GP. We are still searching for answers but the low histamine diet has brought us so much closer to finding out what is truly going on with his body.
Honestly, it's mainly about funds. I cannot afford to eat a Whole30 diet. Flat out, full stop. I'm talking a beans and rice survival budget at the moment. @MariahMichaels I swear, sometimes I think there is almost nothing worth than trying to get healthy and being unable to afford medical appointments, decent vitamins, good food, and such.
Then, after that, it comes to my binge and compulsive eating issues. The further I restrict, the more I binge. I've done okay-ish in the past on keto, but I can't handle the acidic bile loose stools. Having no gallbladder and being on digestive enzymes minimize it, but really the only way I can have "normal" stools is to have enough starches to provide substance. I have to avoid lowering my carbs too much - and I have to avoid nearly all raw greens. Auto-dumping is horrible.
When I was keto, I made good progress for 3 months, then spent the next 15 months in a holding pattern, experimenting, and such.
After that time, I uncovered a number of issues, needing digestive enzymes, low D3, low B12, low iron (still can't find a way to bring this up, no matter what combo of things I use), low zinc, low boron, low magnesium, and so on. I've managed to bring most of these up to at least the low end of acceptable ranges, and massively improved some of them...but I still don't feel great.
Any time I lower my carbs, within a few hours, I'm back to bathroom drama.
As for histamines, I dropped all fermented foods (was brewing kombucha and eating sauerkraut, etc.), as I started getting ocular migraines. But I can't drop leftovers. I know they are a breeding ground for histamines. I have to batch cook just to get any sleep on most days. And being broke means we home cook nearly all meals. I haven't specifically researched low histamine diets, but I know that this is a breaking issue, with the leftovers issue. However, after dropping the fermented foods, and being picky about my tea brands, I've not suffered a single migraine. Maybe I'll look and see if I can phase out anything else...
I completely understand when it comes funds and buying food. We buy almost all of our meat at Aldi and we buy frozen vegetables from different stores depending on price, Dollar Tree has a pretty good selection. My husband loves the frozen blueberries from Aldi too. My husband used to have a really bad habit of binging on chocolate or any sweets in the house, my daughter and I had to hide any candy or cookies or he would eat it and not even remember doing it. Since he's been on the histamine diet he no longer does this, he does eat sunflower seeds and pumpkin seeds when he wants to snack. If you are ever able to go low histamine or lower the amount of histamine you eat, we have figured out a way to make things easier with leftovers. We have started grilling burgers, steak, and chicken on the weekend and putting in it in freezer safe bags with individual servings so all he has to do is grab something from the freezer and throw it in the microwave, and since we buy most of our veggies frozen it makes meals super easy and fast. He does make sure to add olive oil to his veggies and coconut oil to his frozen fruit to add extra healthy fat. He likes sweet potatoes with coconut manna (coconut butter) and I enjoy them too as it doesn't taste like coconut. You can still eat grains unless you are sensitive to gluten, so you don't have to go too low on carbs. Anyways I hope you figure out what is going on with your body. I've watched my husband go from declining health to feeling 80% better. We were starting to plan for him to medically retire (he's 40) because his health was getting so bad he could barely make it through the day. We have hope now that he feels so much better with eating low histamine, it's another puzzle piece that will hopefully solve all of his medical mysteries.1 -
Well, I always swore I could never do keto, so maybe a day will come where I can try this... You never know.
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FWIW, would it be possible to give the leftovers to the rest of the family, with fresh made as-close-as-possible histamine free foods for yourself?
It's fine to eat carbs if that's what your body needs to function better. After all, it's N=1. Not everybody works better on keto. Hugs!!0 -
canadjineh wrote: »FWIW, would it be possible to give the leftovers to the rest of the family, with fresh made as-close-as-possible histamine free foods for yourself?
It's fine to eat carbs if that's what your body needs to function better. After all, it's N=1. Not everybody works better on keto. Hugs!!
@canadjineh
The "rest of the family" is my other half. And no. I simply do not have it in me to cook ever day. I don't have the energy.
And the majority of the time, I batch cook intentionally... I'm also the one who ends up eating more of certain leftovers... LOL
Too many carbs or too many calories in a meal, and I'm taking a nap, period. I sincerely don't know what is better for me. Going hard keto caused me to have thyroid issues flare (was already diagnosed and medicated), I started having dehydration issues (which didn't go away when I stopped keto), massive diarrhea issues (somewhat existed pre-keto, but I simply cannot get a handle on them now - keto? D. Carbs to tighten up? D Too much, too little anything? D. I can't find the trigger and my safe zone is shockingly tiny - and changes without informing me.
Right now, carbs are a survival mindset, as the perpetual bile diarrhea is triggering ... some kind of trauma... Mentally curling into fetal position and just crying, praying for it to be done, swearing never again - but not knowing what to NEVER..., and just ugh...I can't even describe it...
And I can't find the safe amount of carbs. All carbs for me become "gateway carbs." Too many carbs beget more carbs. Too much restriction begets binging. I feel like I can't win or find a zone again...of any kind. *sigh* I'm kind of dietary listless...0 -
@KnitOrMiss Have you ever seen a GI doctor or had any scopes? You may have something going on in your GI tract that is being irritated and it might not matter what you eat. I have IBS and IBD (Ulcerative Colitis) and I have scopes done every 2 years because I'm at a higher risk of colon cancer. I've had stomach "issues" since I was a baby and it took 20 years to get diagnosed and then years to figure out what my triggers were/are and they have changed many times. I've learned how to manage my diarrhea, but I always keep Imodium on me as I find I can stop the attack/ease it if I take the max dose right away.0
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MariahMichaels wrote: »@KnitOrMiss Have you ever seen a GI doctor or had any scopes? You may have something going on in your GI tract that is being irritated and it might not matter what you eat. I have IBS and IBD (Ulcerative Colitis) and I have scopes done every 2 years because I'm at a higher risk of colon cancer. I've had stomach "issues" since I was a baby and it took 20 years to get diagnosed and then years to figure out what my triggers were/are and they have changed many times. I've learned how to manage my diarrhea, but I always keep Imodium on me as I find I can stop the attack/ease it if I take the max dose right away.
@MariahMichaels
I have NOT have any scopes done. I only triggered this loose stool issue in 2016 after being keto about a year. I had my gallbladder out in December 2000, and have had a number of "rush to the bathroom" issues after eating (post GB removal), but I never had diarrhea on this scale until 2016. Not even food poisoning rivaled this stuff by much - maybe my most extreme food poisoning eclipsed it...maybe.
My theory is that whatever enzyme it is that processes raw greens, I finally ran out of it or depleted my usable sources. It was violent, 5 minutes later, "auto eject" syndrome, is how I've described it. Since then, it's been a downhill slide.
I do have a referral waiting for me to go see a GI doc, but I've been putting it off for logistical reasons. I really have no one to drive me home...my fiance is disabled, and no one else local. And I can't afford the tests until my medical benefits restart. Plus I'm scared. Usually you have to go 24 hours without eating to do those tests. Since my body no longer concentrates bile, I have a constant trickle. Usually after 8 hours or so without food, I'm passing straight bile, and it burns and quickly makes me not want to go to the bathroom, ever again.
I have literally been in the bathroom, on the toilet, going, and crying/screaming/praying to die or something so it would end. I can't imagine making it through 24 hours of that. I know I'm a wimp, but I'm traumatized by the idea alone, sincerely.
My PCP offered to do a h.pylori test at my insistence and made me feel like a total hypochondriac/whack job. There were notes about me basically being delusional, because obviously my high blood pressure that is well managed isn't because I never had it until I got back on BCP at 35. I'm hallucinating that, even though I have records to prove it. I saw other patient visit notes that have made me hesitant to see this doctor again, but I'm not sure i can take establishing with yet another new doctor, as she is decent about some subjects. Just other subjects, she acts like I have to be cuckoo or something.
Because of a logistical issue in getting testing supplies, I now have to wait until I can rush back to the lab after creating a "stable" sample, because they can't test loose samples, and it has to be refrigerated immediately, and within 24 hours to the lab, so it has been troubling to find a time to do all of that, and it lent itself to team up with my natural procrastination tendencies and paired up with my crippling fear about all things poo related at this point...and the fact that I can't seem to line up the available time with the available sample...much less the procrastination factor. I've honestly given up on the idea of a test, because it probably wouldn't tell me anything anyway.
Oh, and I almost forgot the weirdest thing. Other than some gurgling, the only pain/discomfort I have is from the exiting orifice. No stomach pain. No digestive pain. No heartburn. No warning, most of the time. And the annoyance is enough with the normal loose adventures, but the only thing that really hurts if I I do that 10+ times in a row - or I have straight up bile waste. It's why none of the other normal IBS type stuff fits. Or UC... Fiber dehydrates me in excess (like taking chia seeds or fiber supps), but I don't seem to have any other digestive drama with it. I react more violently to antioxidants, if anything... I've even considered gastroparesis, but that doesn't fit quite right either...
I have to take digestive enzymes with all my meals. I have to double up if I'm having salad or other raw greens/veg... I used to use Betaine HCL, but I don't tolerate that well (hence the h.pylori concern) in any dose high enough to help with digestion.
Apple Cider Vinegar really helped at first, but then it started creating a reflux/esophageal reaction that made it prohibitive to keep using it...
And I guess I'll have to go at least consult with the GI doc, since no other docs seem to have any idea.
As for the Imodium, sometimes it's great with the initial 2 pills. Yesterday, during a bad bout, I was up to 8 total pills for the day...over the course of the day, and I laid down to take a late nap (fatigue from the all day battle of it, plus the previous day's activity and loss of sleep), and let's just say disaster struck. I'm just ... UGH.
I've never had anyone test for IBS or UC or anything. Everyone assumes (I'm guessing) that it's either no-more-gallbladder related, or Metformin related. And I can tell you, this week was partially related to an attempted increase in dosage, but when I'm on my standard dose, the Met doesn't affect it either way. I've had 2 weeks at a time where I start questioning everything because "I feel almost like a normal human being," and start crying hopeful years...
My uncle died (almost 60 years old) less than 2 years ago from Colon Cancer (no other specific familial risk there that I know of), and I'll be 42 next month, but I've always had the standard tests that go along with a Pap, so I just don't even know what they'll want to do. Sadly, at this point, I know that raw greens trigger it (the healthier the greens, the worse - I can mostly manage iceberg lettuce, but Spring Greens and I'm toast), seems like raw tomatoes have started triggering it, non-fresh salsas (like store salsa) - but for some reason fresh stuff at the restaurant doesn't trigger it, other raw veggies, if I eat more than 2 oranges or so, the antioxidant or something levels in the Elderberry extract I use for immune support, and then most metformin type reactions trigger it - but that's expected... (excess sugar, excess dairy, etc.)
I've got standard blood panels showing progressing dehydration since late 2015, but it's still "in range," but barely, so no other testing. Just "drink more water." I get sodium (sea salt) and water and/or pickle juice, etc., when I feel bad enough to think about it, but I get to the point where too much salt makes my tongue feel "burned."
Goodness, I'm rambling now, and making no sense, so I'm going to stop there....After a bit, if I go back and reread this, I may delete it... I'm sorry for venting and dumping all this here.1 -
@KnitOrMiss I recommend you go see a GI doctor and get testing done. I can tell you this, I've been having GI scopes every 2-4 years since the age of 21 and I'm now 37. So I've been through a lot of them and the prep can suck but you can get through it. I've gathered a lot of tips over the years on how to make things "easier" on prep day, I'd be happy to share. I don't always get GI spasms when I'm having what I call an "episode" of diarrhea, it can come on without any real warnings, just an urgency to go to the bathroom and going can be extremely painful. I keep a heating pad in my office for the days when I have a bad episode to help ease the discomfort. I met a wonderful lady who had stomach problems but didn't go see her doctor about it. She passed away due to cancer that had spread too far before she found out.1
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@KnitOrMiss I second that! You obviously have something wrong. Other than the logistic problems which I totally understand because I haven't been able to drive for 8 years now due to my epilepsy, and the prep the colonoscopy is no big deal. I had both colonoscopy and endoscopy on the same day and it was fine. The prep won't be any worse that what you are already going through. You'll be in the bathroom a lot but sounds like you already are. If you just have it in your mind to be prepared and know the outcome might be an answer to your medical problems it will be worth it.
I forgot about the money issues too, but most places are willing to do a payment arrangement if necessary. And I don't know how far you are from the doctor/facility but maybe you could do an Uber or cab? Maybe even ask the doctor's office if there is any kind of medical transport you could use. They have a lot of those in the town I'm in to get seniors, etc. back and forth.1 -
KnitOrMiss, I feel so bad about your situation. Is there a community service group like Elks or Moose Lodge or some such that can help with transport? I know the Elks club here have an arrangement for those with limited means, and even a special bus to take patients down to a few of the major hospitals that specialize in heart/oncology/children's illnesses. Your doc's office may have some contact info on that.
You are totally welcome to vent & dump, that's what we're here for.2 -
canadjineh wrote: »KnitOrMiss, I feel so bad about your situation.
You are totally welcome to vent & dump, that's what we're here for.^^ THIS ^^
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@KnitOrMiss I have had horrible stomach issues my entire life. first peptic ulcer in the 4th grade. Irritable bowel symptoms- the cramps and the repeat BMs ruled my life. When I found out I had RA i started taking cucurmin. I have not had a single episode since. There are studies out there about the effectiveness of it for gut issues, ulcers, inflammation etc. You have to take a standardized extract, preferably with Meriva which is a brand name, if you will, for the standardized extract which has been treated so it can be absorbed. The brand I get costs about 30 dollars a month from amazon. I am always fearful of taking meds because of my stomach but this stuff is great. I started out with a cheaper brand that had piperine (black pepper) in it for absorbtion, but it gave me heartburn. Give this a read. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/0
