Tentative PCOS diagnosis...so many questions
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I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.
It wouldn't surprise me if they found PCOS to have a certain amount of autoimmune activity. I've already seen a lot of promise in numerous people for reducing or eliminating things like dairy and gluten for PCOS, IBS, and at least Hashi's in the thyroid department. Unfortunately, nothing will change until doctors start asking the right questions and seeing that it's not just a "fertility issue" or "just" anything and start digging into the root causes of the issues (which I have little doubt will be similar environmental causes as IBS, Hashi's, and other issues with an autoimmune component).
I've seen, and have had a lot more success with, integrative doctors. They can be hard to come by, though, and don't take insurance (due to their needs for how to practice conflicting with what it takes to deal with insurance), but they're worth every penny, because they do do interconnected treatments for things.
We took my son to one due to behavior issues that his primary just shrugged her shoulders at and basically said "we could try Ritalin." The integrative doctor ran more tests than the primary would have even dreamed of doing, and found nutritional deficiencies that have gone unnoticed, because primaries basically won't ask the right questions. His gut flora basically looked like Chernobyl, and was completely devoid of lactobacillus species and was having issues with parasitic flora overgrowth, thanks to all the antibiotics from recurrent ear infections (that the primaries didn't bother to refer to an ENT after the third one in about as many months like they're supposed to). His gut flora was so messed up that he couldn't digest meat properly and ended up deficient in basically all the nutrients found in red meat (he'd refuse to eat meat, probably because he didn't feel well afterwards). Since starting him on supplements and probiotics, his behavior has improved and he's starting to more readily eat meat (the big hit right now is chicken, but he'll do pork sometimes, red meat is still sketchy, but we're getting there).0 -
Our bodies are such finicky things. One thing I always tell people when I speak to them is that ranges for tests are just that, ranges. If your level of normal is the top of the range, and you test out in the middle or the bottom of the range, you are deficient. That is why I was thrilled that my endocrinologist has been so flexible with trying different combinations in symptom relief, despite what testing dictated. Alliwan, there are a number of thyroid support supplements (Iodine/Iodide being a huge one, but there are other "multi's" out there for it), so you can always give yourself more thyroid support, even if there are no "problems." I was told that I just need to repeat testing to monitor usage, because thyroid numbers are the only way to test efficacy on the supplement.
Since I have no gallbladder, my digestive problems are aplenty. I need to figure out a not so expensive way to get more gut flora/probiotics or whatever you call it back up to snuff, because I am worried about not absorbing nutrients, and I know on that chart of what to worry about with solid waste, most of my stuff is in the "be concerned" column or the "worry and treat" column... Any suggestions here, aside from the obvious "eat more fermented products" are great. I'm not huge on fermented stuffs, so even if someone can recommend ways to work that in, I'd be on board. Yogurt and I are NOT friends at all - and Greek yogurt is the worst - makes me sick, likely due to my mild lactose issues that are odd...except at odd parts of my cycle...
All of y'all are awesome. I'm so glad we're fighting all of this together! Makes the war easier with educational reinforcements.
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Dragonwolf wrote: »I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.
It wouldn't surprise me if they found PCOS to have a certain amount of autoimmune activity. I've already seen a lot of promise in numerous people for reducing or eliminating things like dairy and gluten for PCOS, IBS, and at least Hashi's in the thyroid department. Unfortunately, nothing will change until doctors start asking the right questions and seeing that it's not just a "fertility issue" or "just" anything and start digging into the root causes of the issues (which I have little doubt will be similar environmental causes as IBS, Hashi's, and other issues with an autoimmune component).
That is an interesting idea. I've been dx with PCOS and Chronic Fatigue Syndrome since i was 16, signs of Rheumatoid arthritis (which is auto immune) since i was 25 and dx with it at 28, Psoriasis (also autoimmune) and Sjogren's syndrome (also autoimmune). I also had breast cancer at 33 and again at 35 with NO family history of it. I always chalked it up to my mother doing drugs, mostly pot, while she was pregnant with me (darn hippies!) but maybe it has a lot to do with the PCOS and wacky autoimmune/hormonal response.0 -
I too have autoimmune and PCOS.
I have psoriasis/psoriatic arthritis. I got psoriasis at 16. It's hard to tell definitively when my PCOS started, but was only able to control my weight by starvation tactics by the time I was 13 or 14, and needed to start hair removal on my face by 16. So my guess is I've had it since puberty.
My ND also thinks I've thyroid issues (due to basil body temperature, and a few other symptomatic issues) but my blood test show I'm in the 'normal' range.
I certainly believe that everything is interconnected, and I think communities like these reinforce that I'm not crazy to think so.
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I believe I posted it on another thread, but just because you are in range does not mean that is in range FOR YOU. Make sure you have a doc who is willing to treat the symptoms too, even if your bloodwork doesn't fully support the diagnosis.
My PCP suspected thyroid problems back almost a decade, but never could get the range results to show it. Finally did a couple years back, but after a med that didn't help, I thought it was fluke because it was "barely" a problem. Now that i'm treated with a different med and supplement and feeling human again, I know it wasn't. My normal range is not the test's normal range... Listen to your body. If it is saying something is wrong, it is. We are not a one size fits all society. It is my endocrinologist who told me this - about the ranges not fitting everyone, in particular for people with PCOS...
I never thought about the fact that I had more or less borderline precocious puberty and weight problems. I was the "fat kid" since I was less than ten. I started my periods at 9. Which means that I was in hormone flux since at least 8. And the last time I remember being average/healthy was around 6-8 years old. This makes so much sense!!!!!
I was already on the bandwagon of advocating PCOS testing and treatment to any females I hear about having problems, but this makes me wonder, seriously, how many widespread cases there are being untreated... This condition could have higher rates than other crazy diseases....0 -
I've also been reading about a potential link between early puberty, and PCOS.
Interestingly enough I was put on my first diet at 10 because of rapid weight gain (though I wasn't actually fat), my period started at age 11.
I've never really made that correlation before, but there very well could have been the trigger for the weight gain.
I learned very young that deprivation was the only way to maintain my weight. I was a reasonably 'healthy' weight until I reached my 20's got married and stopped starving myself.0 -
I've also been reading about a potential link between early puberty, and PCOS.
Interestingly enough I was put on my first diet at 10 because of rapid weight gain (though I wasn't actually fat), my period started at age 11.
I've never really made that correlation before, but there very well could have been the trigger for the weight gain.
I learned very young that deprivation was the only way to maintain my weight. I was a reasonably 'healthy' weight until I reached my 20's got married and stopped starving myself.
I started the month i turned 10 and my daughter started at 10 and a half, my mother started at 9 and all of us have PCOS. My dad put me on my first diet at age 9 (slim fast is soo gross!) because id gained about 20 lbs that year. And i was active, outside all the time with all the siblings climbing trees, slip and slide, making mud pies, etc. Didnt eat more than others but gained weight anyway.
Its amazing how we all have similar stories. Amazing that because this is seen as a 'ferility' issue, it hasnt been more studied and girls arent caught earlier so their lives are a train wreck of hormones by the time it is a fertility issue in their 20's 30's or 40's.
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KnitOrMiss wrote: »Since I have no gallbladder, my digestive problems are aplenty. I need to figure out a not so expensive way to get more gut flora/probiotics or whatever you call it back up to snuff, because I am worried about not absorbing nutrients, and I know on that chart of what to worry about with solid waste, most of my stuff is in the "be concerned" column or the "worry and treat" column... Any suggestions here, aside from the obvious "eat more fermented products" are great. I'm not huge on fermented stuffs, so even if someone can recommend ways to work that in, I'd be on board. Yogurt and I are NOT friends at all - and Greek yogurt is the worst - makes me sick, likely due to my mild lactose issues that are odd...except at odd parts of my cycle...
Your issues with dairy sounds more like an issue with the protein, not the lactose (and may have to do with your gut flora issues). Yogurt in general, and Greek yogurt, specifically, don't have a lot of lactose. The cultures used to make them are generally lacto-fermenting, so they eat the lactose. Greek yogurt is generally made by straining the yogurt, which removes the liquid, which is where the bulk of the lactose is.
That said, the only way to get probiotics, without taking pills (which are expensive), is to consume fermented things. But "fermented things" don't just mean sauerkraut. There are all sorts of fermented things that you may not realize is fermented, like Worcestershire sauce.
Water kefir would probably be a good one. You can pick up some water kefir grains (the starter culture) for pretty cheap, and you only need a few. Then, you keep it in a jar on the counter with water and sugar and let it do its thing. Every few days, you'll have a cup or three (depending on the size of the jar) of probiotic rich goodness. Add some lemon and you have yourself a fizzy lemonade. For an extra mineral boost, use coconut water for part or all of the water. Just make sure you use water kefir. There is a difference between water and milk kefir, and you'll kill milk kefir if you deprive it of lactose.
Another option is to pick up some fresh ginger and make a "ginger bug," which you can then use to make things like ginger ale, root beer, and cream soda. Just grate the ginger into a jar, add water, sugar, and a little molasses (for minerals) and mix. Add a little more ginger and sugar every day and starting around day 3, you'll have the starter culture for homemade sodas.
Kombucha is another option, though it's a little more involved to do at home and a bit pricey in the store (plus you have to deal with added sugar and whatnot).
You can do home made pickles that are fermented, too. Cucumbers, salt, water, herbs of choice, and time are all you need.0 -
I've looked into water kefir and kombucha, and there seems a lot to it. I've made sourdough before, but honestly, it is forgiving as far as if you forget a day, etc. Are these as forgiving? We use worcestershire sauce often, so that's good... I've heard kimchi is scary... LOL I've only had sauerkraut once, despite being 25% Polish, and usually the smell if offputting, but now that I know many people rinse it before cooking it, and I already love cabbage, I might try this... I'm scared, but ...
My problem with cheese/dairy is weird. I don't have any problem at all with hard cheeses. It is soft cheeses/milk. I'm okay with cream, even half and half. It is the ricotta, cottage cheese, cream cheese, sour cream, yogurt stuff I have such huge problems with... Sour cream I can do in small doses. Cream cheese I can handle when cooked. Yogurt I can tolerate when I'm visiting Aunt Flo, but since that doesn't happen anymore with meds, I don't try. But Greek Yogurt gets like Cream Cheese, and that has actually made me quite ill before. Cannot do cheesecake or anything like that. Makes my tummy hurt...and makes me queasy. I don't know what it is. Cottage cheese I can stomach, but it makes me ... rumbly?
Speaking of cycle effects - does your gut flora alter cyclically? Or just random with food eaten and all that?
Milk is intermittent. I can drink it, but my body treats it like a mild sensitivity (like it builds extra phlegm and if I drink too much, a tummy ache). I don't have this issue at all with any gelato or ice cream or custard, anything like that. I just don't understand.0 -
I love pickles, Claussen are my favorites... Are they fermented? **crossing fingers dramatically** Cannot do sweet pickles at all...blech. How do you ferment them?0
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KnitOrMiss wrote: »I love pickles, Claussen are my favorites... Are they fermented? **crossing fingers dramatically** Cannot do sweet pickles at all...blech. How do you ferment them?
As a general rule, if there's vinegar in the ingredients, it's not fermented. The link in my last post has a how-to for making fermented pickles, but I haven't done it myself, yet. I keep meaning to, but then get busy before my cucumbers go bad.KnitOrMiss wrote: »I've looked into water kefir and kombucha, and there seems a lot to it. I've made sourdough before, but honestly, it is forgiving as far as if you forget a day, etc. Are these as forgiving? We use worcestershire sauce often, so that's good... I've heard kimchi is scary... LOL I've only had sauerkraut once, despite being 25% Polish, and usually the smell if offputting, but now that I know many people rinse it before cooking it, and I already love cabbage, I might try this... I'm scared, but ...
My problem with cheese/dairy is weird. I don't have any problem at all with hard cheeses. It is soft cheeses/milk. I'm okay with cream, even half and half. It is the ricotta, cottage cheese, cream cheese, sour cream, yogurt stuff I have such huge problems with... Sour cream I can do in small doses. Cream cheese I can handle when cooked. Yogurt I can tolerate when I'm visiting Aunt Flo, but since that doesn't happen anymore with meds, I don't try. But Greek Yogurt gets like Cream Cheese, and that has actually made me quite ill before. Cannot do cheesecake or anything like that. Makes my tummy hurt...and makes me queasy. I don't know what it is. Cottage cheese I can stomach, but it makes me ... rumbly?
Speaking of cycle effects - does your gut flora alter cyclically? Or just random with food eaten and all that?
Milk is intermittent. I can drink it, but my body treats it like a mild sensitivity (like it builds extra phlegm and if I drink too much, a tummy ache). I don't have this issue at all with any gelato or ice cream or custard, anything like that. I just don't understand.
The Greek yogurt thing is a bit weird (it's casein-heavy, not whey-heavy, but it may be something else), but the rest sounds consistent with issues with whey, one of the proteins in milk. Allergy/intolerance to whey (the main protein) is pretty common among those with dairy issues.
Ricotta is cheese made from the whey by-product of mozzarella.
Cream cheese often has added whey in it (which may be why you can tolerate it sometimes, but not all the time; it might have to do with the brand).
Cottage cheese is often made from the byproduct of making butter, which is very protein-heavy (since the vast majority of the fat was pulled out to make butter), but can be made with whole milk, too. The curds part are the casein proteins, and the liquid is mostly whey and water.
Cream and sour cream are generally low in whey (and casein, and lactose), as the cream separates out, due to the density differences of the proteins and fats. Half and half is relatively low in it, too, though obviously has more than cream.
Good ice cream has more cream and egg in it than milk, which reduces the per-serving amount of whey. Custard and gelato have even higher cream contents than regular ice cream (yes, there are actually quasi-regulated differences).
Yogurt retains the 80/20 whey/casein protein ratio and removes the sugar, so...yeah.
As for gut flora, not much is understood about it, but to my knowledge, there is a certain amount of cycling and it changes based on what you eat. Different flora thrive in different environments and push out other flora. If you get sick or take anything that disrupts the biome (antibiotics being the big culprit, but I suspect Metformin when it has adverse effects will do it, too) will change the composition. Your microbiome can change in a week's time, in fact.
If you're interested in further reading, Dr. Eric Topol has a ton of resources on it, including some cool experiments that explore changes in a couple of people's microbiomes over the course of a year. I can't find it off hand, though.
Making kombucha is a little involved, but kefir isn't. Here's another recipe that's simpler. I'm not kidding when I say that the bulk of it is "sit it on the counter and let it do its thing. Add some sugar each day to keep it fed."
As for other fermented veggies, there are crock pots designed specifically for that purpose. You might want to check that out. Other than that, just keep it in a pot or other type of container and let it do its thing. You can stick it somewhere out of the way, like in a closet or something, while it ferments.0 -
I'll have to-do some research this weekend it seems. Kinda nervous to fix things with such limited funds and all. Thanks for all the amazing info!0
