The wonderful world of PCOS

9 years ago #9430209          

You see, this is where you set Niels on him.

9 years ago #9430941          

It's really irresponsible of you to spread misinformation about PCOS, metformin, and medical science. You should really educate yourself more on your disorder as well.

PCOS does not cause your body to immediately put sugar into fat reserves (and chicken doesn't contain carbohydrates and is uneffected by metabolic disorders like PCOS). PCOS causes insulin resistance which does the EXACT OPPOSITE of what you claim. Insulin resistant individuals have cells that do not properly respond to blood glucose, and cannot metabolize them. This glucose then builds up in the blood stream, it does not get stored as fat, or metabolized by the body. Eventually your serum glucose levels will go down due to the slow action of insulin in your body, or due to exceeding a threshold of about 200mg/dl causing your body to release sugars in your urine as an emergency way to bring blood glucose levels down.

People with PCOS will often experience periods of rapid unexplained weight loss as a result.

Metformin does not help your body regulate sugar or turn it into energy.

Metformin helps keep your blood glucose levels lower by impairing hepatic pathways of glucose production, primarily gluconeogenesis. See, when your cells cry out "Please give us glucose!" your pancreas responds by releasing insulin. When insulin levels are high but the cells still are calling for glucose, your liver says "Well shit, we don't have enough glucose!" and begins raising your blood glucose through gluconeogenesis where it turns fat into glucose.

In normal people gluconeogenesis helps them avoid hypoglycemia. In people with metabolic disorder (like PCOS) it causes your blood glucose to spike to unhealthy levels. Metformin inhibits gluconeogenesis, and tells your liver "Nah brah, we cool", preventing it from raising blood sugar in response to higher insulin levels.

Metformin thus actively prevents your body from turning fat into glucose, and gives your body time to try and bring down it's glucose levels.

The primary recommendation for people with PCOS is weight loss. The less fat you have the less your liver can spike your blood glucose, and the less insulin resistant you will be. You need to focus on losing weight and eating low carb to help regulate your blood glucose. Being overweight while having PCOS is very unhealthy and can lead to permanent complications, such as vision loss, neuropathy, and circulation problems.

In the short term it's causing damage to your pancreas which over time will further impair your body's glucose response pathways.

9 years ago #9431051          

@JoeBo Ok so... the PCOSupport website (I'm assuming they have their information correct since they're an organization, and the PCOS Foundation website links to them) supports the "glucose converted straight to body fat" statement: http://pcosupport.org/what-is-pcos.php. Both websites also say that PCOS CAN cause insulin resistance, as well as other things like heart disease and high blood pressure, but from the wording it sounds like it isn't necessarily found in all cases. Human physiology isn't my strongest point, which is why I went to look it up, so I wouldn't know for sure if the websites have false information, but both websites are meant to educate people about PCOS so I find it hard to believe they would put out false information.

9 years ago #9431321          

@fireflower201 PCOS support websites are not websites run by the scientific or medical community, but by PCOS sufferers and supporters.

Direct evidence from the scientific literature reveals that PCOS manifests nearly identically to Type 2 Diabetes, but the underlying cause is hormonal insulin resistance as opposed to genetic or acquired insulin resistance. The recommendation is to control blood sugars through low-carbohydrate diets, and exercise to reduce weight.

http://humupd.oxfordjournals.org/content/19/5/432.long

While the underlying cause is different, the manifestation is through insulin resistance:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909929/

http://linkinghub.elsevier.com/retrieve/pii/S0015-0282(08)04730-4

This is literally the OPPOSITE of immediately converting glucose to fat. It's quite literally impossible for your body to do this when highly insulin resistant. The main way your body can respond to glucose without insulin is through your muscle's glucose transport pathways, which are independent of insulin:

http://jap.physiology.org/content/99/1/338

People with PCOS gain weight primarily because they are inactive and eat too much. Their body does make it easier to gain weight under these circumstances since their cells aren't processing glucose normally, but only in situations where they are leading largely sedentary life styles. All it takes is 30-60m a day of moderate to vigorous exercise to start reversing insulin insensitivity, and eating a healthy low carb, calorie restricted diet.

9 years ago #9431467          

@JoeBo Ok a couple of things:
1. Thank you for linking these articles. Without a strong background in physiology I wouldn't know how to look for the information
2. I realize this is extremely nitpicky, but only one of the articles you linked was to a specific study, and the others are not "direct evidence". Obviously if they're reputable reviews they would have read the original articles and cited them, and I am sure a lot of the original articles are inaccessible to the public without paying a fee, so these reviews should be fine. It just bugs me a bit that you cited them as direct evidence when they aren't.
3. I found the full version of the first link you posted (in PDF form) in case you haven't read it yet and you're interested in reading it: http://www.researchgate.net/profile/Helena_Teede/publication/235658633_Dietary_Composition_in_the_Treatment_of_Polycystic_Ovary_Syndrome_A_Systematic_Review_to_Inform_Evidence-Based_Guidelines/links/0deec538fcb229fa41000000.pdf
The authors do say that most of the studies they reviewed had moderate to high bias, with specific problems of conflicting results for some studies and sample size for others, and specifically say in their conclusion that they could not make recommendations regarding specific diet composition, though they do mention reducing caloric intake and urging healthy eating habits.
4. Though to be fair, weight loss and healthy eating habits are good for an extremely wide variety of diseases, and for disease prevention.
5. I have a few questions about the last article: does the glucose transport pathway have a similar efficiency to using insulin normally? Is it one or the other, or can they be used simultaneously?
6. I didn't see anything in the articles about immediately converting glucose to fat either. I wonder where those websites got that from?
7. It really is too bad if the organization websites give out false information because they literally exist to inform the public (and maybe raise money for research I guess).
8. I do think, though, that you may have been a little hard on Humon in your original post, especially if she had gotten false information from places like those organization websites.

9 years ago #9431511          

@fireflower201

All of the links are to scholarly articles in peer reviewed journals. You aren't going to learn, or debate, an issue by being a science denier

I've read all these papers. I actually am a scientist working on diabetes, PCOS, and insulin resistance. I'm primarily focusing on PCOS and type 2 diabetes as my main research area is young adults who develop metabolic syndrome and impaired glucose tolerance, especially the lack of early warning signs.

Many PCOS and type 2 diabetics (including pre-diabetics) do substantial pancreatic damage to themselves before they are properly diagnosed, and further damage if they don't properly manage their condition. For young people this can mean a lifetime of complications, and eventual dependency on administered insulin.

The dietary composition bit is a big hot button issue. The ADA has long been advocating diets that are very "normal" because in the past most people with insulin sensitivity were older and permanent multi-decade life style changes just weren't in the cards. Unfortunately this advice is TERRIBLE for people who get PCOS or early onset type 2 diabetes and will be managing their diseases for the next 30-50 years.

You are definitely correct, weight loss, healthy eating, and exercise are things everyone should be doing. For people with metabolic disorders, however, it's a life or death issue. LITERALLY.

On glucose transport pathways - there are a few ways your body can metabolize glucose. Two thirds of your body's cells are myocytes (muscles) or adipocytes (fat). In the case of skeletal muscle and adipocytes insulin activates transport proteins in the cell membrane which allow glucose to be brought into the cell for processing and storage. In normal people insulin causes the insulin receptors to signal the glut-4 transporter proteins to take glucose into the plasma membrane of your cell where it is converted into glycogen, pyruvate, and fatty acids. In adipocytes this causes fat storage.

People with PCOS and type 2 diabetes have problems responding to insulin, so the glucose hangs out in their blood stream and often reaches toxic levels (>140mg/dl), which causes beta cell death in the pancreas.

Alternative glucose transport pathways are just ways to get glucose into certain cells WITHOUT insulin. It's important for diabetics and patients with PCOS because it's a way to lower blood sugar and avoid glucose toxicity. These pathways will NOT make you fat, because they are ways for your cells to immediately use glucose.

GLUT1 is mostly found in fetal tissues, but also in adult brain tissue. It is not insulin dependent.

GLUT2 is found mostly in the liver and pancreas and is bidirectional and not insulin dependent. When blood glucose is high the GLUT2 receptors in your beta cells can expose the beta cells to toxic levels of glucose, causing them to die. Since beta cells produce insulin, this means your insulin dependent glucose transport pathways will fail.

GLUT3 is primarily found in your neurons, and not insulin dependent.

GLUT4 is the myocyte and adipocyte pathway we've discussed and is insulin dependent.

Class II/III glucose pathways are not as well understood, but are not insulin dependent, and many exist in your primary muscle groups and are activated by exercise. They can help dramatically lower blood glucose.

Glucose is primarily converted directly into fat by healthy non-insulin resistant individuals, not people with diabetes or PCOS. Diabetes and PCOS will both inhibit the storage of insulin as fat due to the deactivation or retardation of GLUT4 pathways, which are the only pathways in adipocytes.

Being uninformed is one thing, spewing dangerous misinformation is quite another, that's why I was hard on Humon.

9 years ago #9432084          

@JoeBo I wasn't denying the articles' credibility. The fact that they're peer reviewed doesn't make them "direct evidence", though. I don't know how it is in medicine, but in ecology we're taught to be wary of "grey literature" - that is, reviews of original studies, personal communications, etc. and to use reviews as a starting point to find the original studies or at least use them in conjunction with original literature if you are writing a paper or giving a presentation. Also, I am aware that reviews often make original research easier to understand, so I understand why it would be better to link those rather than the original papers. My comment was solely about semantics, and it bothered me much in the same way you'd get bothered if one tile of a floor wouldn't fit in with the rest of the pattern. Perhaps we just have a difference of opinion about what is considered "direct evidence" and what isn't.

I definitely like learning new things, though, so thank you for explaining about the glucose pathways. Do the exercise-activated glucose pathways operate on just an on/off basis, or it possible to have a cumulative effect? What I mean is, if you regularly exercise, would that make it easier for insulin-resistant individuals to utilize glucose more effectively? Sorry if that's a dumb question...

I do understand that spreading misinformation about health-related matters can be dangerous. What I meant was, I think you could have worded your post in a more tactful way. Perhaps you did not intend this, but your opening remark seems a little aggressive, and if people feel like they're being attacked they may be less willing to listen to or read anything else you have to say.

Even better though, would be to contact Humon directly and ask her to either add a note in the description of the comic, or remove the comic completely to avoid misinformation. I just don't think that simply commenting on the comic would necessarily help to stop the misinformation. How many people would read this post thoroughly? How many readers would even look at the comment section? I know I don't always read comments for the webcomics I read. I apologize if you have already tried this approach.

9 years ago #9433357          

@JoeBo I am not going to read all your links or quibble about if you are right or not. What I am going to say is you are rude as hell. You don't publicly insult or "correct" a person suffering from a disorder you don't. 99.99999999% of people are not going to understand what happens to the body in PCOS, most Doctors do not understand what is happening in the body in PCOS. That is why it is treated symptomatically.

Learn to share information with out being an utter twat please.

9 years ago #9433458          

@PCOSlife I'm sorry but you're wrong.

Humon is spreading disinformation about a disorder under the claim to be ranting that others don't understand things. Ignorance posing as knowledge from an influential artist is dangerous to the health of others.

9 years ago #9433544          

@JoeBo Again I say learn to share information without being an utter twat. It could be that this is how the disorder was explained to Humon, It is exactly how it was explained to me; by the doctor that diagnosed me who is cross trained in endocrinology.

That because my insulin levels were so chronically high my liver was constantly converting my blood sugar (which never went above or below normal levels at that time) into fatty acids for storage. A conversion that happens in the liver not in the fat cells.

Now unless you are a doctor of endocrinology with 15 years of medical school you may not correct that statement.

9 years ago #9435102          

@PCOSlife It's rather ironic, I've been sharing information by citing sources and being respectful, and yet you, who has resorted in your first post to calling me a twat, are claiming I'm the one lacking ability in civil discourse?

> It could be that this is how the disorder was explained to Humon

No doctor would ever claim chicken has sugars in it, because it is simply not true.

> It is exactly how it was explained to me; by the doctor that diagnosed me who is cross trained in endocrinology.

Then I suggest you find a new doctor.

> That because my insulin levels were so chronically high my liver was constantly converting my blood sugar

Insulin has an antagonistic effect on glycogenesis (the conversion of blood glucose into glycogen), and while lipogenesis is insulin mediated, if you have PCOS your liver actually slows at lipogenesis due to insulin sensitivity problems caused by the hormonal imbalance.

In both cases metformin does nothing about lipogenesis or glycogenesis. It only inhibits glyconeogenesis.

> Now unless you are a doctor of endocrinology with 15 years of medical school you may not correct that statement.

Anyone can correct that statement, because it is wrong. Again, I'm not going to flash around credentials on the internet. You have no way to confirm or deny them, but I've provided detailed information on the process, and mechanisms involved. You can easily confirm this on your own, and infer my credentials as a result.

I care deeply about PCOS and metabolic disorders for a reason, however, because this is the area in which I work. But again, don't believe me because I claim to have experience and qualifications. Believe me because you have done your own research and confirmed what I've said.

Metformin's mechanism is the suppression of hepatic gluconeogenesis, and the broad improvement of insulin sensitivity in GLUT3 channels, which would PROMOTE lipogenesis.

https://www.ncbi.nlm.nih.gov/pubmed/12093242?dopt=Abstract

9 years ago #9435281          

@JoeBo that is the thing, you are not being respectful. Your posts are aggressive, condescending and insulting. They sound like you are lecturing everyone from your high horse because you and only you are ever right.

Try feeding some of your post through https://tone-analyzer-demo.mybluemix.net/ and look how angry and aggressive they rate.

My whole issue with you has been how you are delivering this information not the information itself. By being so aggressive you are going to trigger a knee jerk reaction in people that already have a misunderstood syndrome. In the end it will get you and the information you are trying to share ignored.

9 years ago #9435411          

@PCOSlife You are projecting.

Nothing I have said has been disrespectful or aggressive. Nor have they been condescending or insulting. They've been scientific and fact-based.

You on the other hand have resorted to calling names from the start, which is disrespectful, aggressive, condescending, and insulting.

Citing medical articles and giving indepth information on a disorder is not aggressive or angry. And yes, my tone is clinical, not conversational, because I am giving unbiased information as opposed to opinion.

You on the otherhand keep calling people twats.

Hmmm.

9 years ago #9435601          

@JoeBo As sufferer of Atypical PCOS I was misdiagnosed for 10 years; I have had to explain to laymen and GPs about my condition in the 14 years since I have been diagnosed. When I first read your post I had a automatic reaction of "How rude" and "Wow he is full of himself" that made me totally discredit any thing you had to say. I Even copied your posts over to the tone analyzer myself but I could not link back to the results directly for you.

The first post itself had a 92% anger rating. The way you write and present the information on the internet is more important then the information itself. you come off hostile and no one will do anything but argue and ignore you.

9 years ago #9435825          

@PCOSlife

> When I first read your post I had a automatic reaction of "How rude" and "Wow he is full of himself" that made me totally discredit any thing you had to say.

Sounds like you are projecting.

> I Even copied your posts over to the tone analyzer myself but I could not link back to the results directly for you.

Fantastic. I'm quite sure automated algorithms are anything but full proof and largely tested on biased samples of the populace.

> The first post itself had a 92% anger rating. The way you write and present the information on the internet is more important then the information itself. you come off hostile

My language is entirely clinical and scientific. This is not hostile, but it is also not conversational.

> no one will do anything but argue and ignore you.

Feel free, it's no skin off my back. Ignore good advice about healthy lifestyles at your own peril. It won't effect me.

9 years ago #9454578          

@JoeBo Actually, your first two sentences in your original comment sounded neither clinical nor scientific. "It's really irresponsible of you to spread misinformation about PCOS, metformin, and medical science. You should really educate yourself more on your disorder as well."

These sentences, since you put them first, came across as completely judgmental and opinionated, leaving most readers with the first impression of you being someone who simply Googled PCOS and then spewed a bunch of medical speak from the Web without necessarily understanding all of what you said. Had you put those sentences at the end (or, even better, left them out completely until later in the threads), you would not have received as negative of a reaction.

Additionally, you later said, "Humon is spreading disinformation about a disorder under the claim to be ranting that others don't understand things. Ignorance posing as knowledge from an influential artist is dangerous to the health of others." Your use of the word "claim" further shadows your credibility because the word contains the connotation of "ulterior motive." Basically, in the average reader's eyes you just accused Humon of trying to deceive people (an impression strengthened by your use of the word "disinformation"). Not a good direction to take if you're trying to stay "scientific and clinical" the way you claimed.

I get that you are concerned about misinformation about PCOS. I get that you have worked in the field for some time now. I get that you know what you're talking about. That still doesn't excuse you from the need to make sure you're actually communicating in a polite, welcoming tone. It is possible to be clinical and scientific without sounding like a jerk. I should know--I have had to learn the proper balance between being accurate and being tactful. Which is why I immediately recognized that, in this case at least, @PCOSlife is completely right in that you have ruined your credibility in the eyes of the average reader.

Telling someone that they "need to educate themselves on their disorders" when they've been dealing with the disorders for some time (and therefore have probably done a good bit of at least entry-level research) is EXTREMELY rude. In addition, as someone who's spent a large amount of time researching and studying PCOS at a professional medical level, you have learned what sources are and are not accurate, a PoV which the average PCOS sufferer may not have been able to develop, especially if the PCOS patient's medical advisors are the ones who laid the foundation of the PCOS patient's understanding of PCOS. Your attitude towards Humon and your refusal to balance accuracy and conversationality is making it hard for most readers to take you seriously, which means that you essentially wasted the time it took you write your comments. Your comments don't come across as "good advice on healthy lifestyles." They come across as fault-finding and rude.

9 years ago #9455343          

@TBusch Thank you very much. You have made my point so much more eloquently than I did in my attempt.

9 years ago #9435391          

@PCOSlife

I am not going to see if you are right or not, or think about why perpetuating misinformation is bad for the general public. I am just going to call you a meanie poo and make up statistics.

FTFY

9 years ago #9435701          

@EpsilonGreedy Miss Greedy, aggressive word choices would reduce people's willingness to listen. FTFY

9 years ago #9435285          

Instead of directly pointing out that people with PCOS tend to have slower metabolic rate and still feel hungry even after they consumed enough nutrients, JoeBo chose to put it this way, "people with PCOS gain weight primarily BECAUSE THEY ARE INACTIVE AND EAT TOO MUCH". Well, encouraging PCOS patients to do more exercise and eat a healthy diet is one thing, patient-blaming is another. Humon's info may not be 100% correct, but JoeBo's information is also not direct evidence. Period.

9 years ago #9435409          

@Oath No, I explained it scientifically.

That eating less and exercising more is a solution doesn't mean I'm "blaming" anyone. It's simply the truth. If your metabolism isn't working correctly, and the problem is your GLUT3 pathways for insulin moderated uptake of glucose the solution is to use non-insulin moderated pathways, and to control your blood sugar by eating only what your body will use, and when you can make sure it will use it efficiently.

Don't strawman me.

9 years ago #9435672          

@JoeBo Choice of words can indicate your views towards sufferers of PCOS. And I was just expressing my feelings. Strawman what?

9 years ago #9435824          

@Oath No, your projections indicate your views towards anyone telling you uncomfortable truths.

Some of my best friends have PCOS. Why would I have any bias against people with a random genetic disorder.

You aren't making sense.

9 years ago #9432172          

AAAAAAUGH! Thank you! This was really cathartic to read, actually. I also have it and I hate it. I can often feel my ovaries aching, I am constantly fighting hair in weird places, and I had to have surgery in my early 20's to stop my uterus from trying to kill me. I need birth control to control the symptoms, but I have other more serious conditions that don't make that wise for me to take. PCOS is a miserable enough experience all on it's own without the stupid comments from outsiders.

My weird silver lining is that I am so dark blonde I'm nearly a brunette, and I'm growing bright red chin hairs. PCOS is turning me into a freaking Viking.

9 years ago #9489037          

@longtail4711
EXCELLENT. Let us don plaits and bows and go terrorize England together.

9 years ago #9431559          

Wow, never heard of it before now or at least not a term for it. I hope that if I start asking anyone about their medications (which is unlikely unless I know them pretty well) I don't immediately just jump to conclusions like that guy.

9 years ago #9431469          

<sigh> i have a transgender friend who's gone through similar bullshit. Can relate how you feel. Sorry to hear it's so frustrating.

9 years ago #9431094          

I'm in more or less the same situation (I don't take birth control) and it is SO FRUSTRATING explain to people that, yes, metformin is used to treat diabetes, but it is ALSO used to treat PCOS. Most times I get a blank face when they hear PCOS, to which I calmly and rationally (not at all) explain what it is. Funnily enough, I get more women who have no idea what it is than men, or simply I get more women not quite believing what I'm telling them. So I then graphically explain to them EXACTLY what PCOS entails, and watch their faces turn green with glee. I love you're comics about PCOS, and actually point people towards them because they are the most useful way of explaining this problem to people whose IQ's just simply haven't mastered the connection. Thank you, and I eagerly await more (or indeed, anything that you write. It's gold either way.)

9 years ago #9430489          

Having any "invisible illness" is such a pain in the ass. My fiance has hypothyroidism and I have Narcolepsy, both of which relate to weight gain... and people just can't seem to wrap their brains around the fact that this isn't laziness.

9 years ago #9430463          

Yep. My mom and my sister had both PCOS and both suffered with facial hirsutism and painful periods. So, in my teens, after my first very painful periods, I was driven to my gynaecologist by my mom. She wanted to get me tested for PCOS. I got the diagnosis. Therefore, I was put on the pill. First thing my mom tells me getting out of the hospital: "Never EVER mention this to anyone, specially at school, or everyone is going to thing that you're easy. Think about your reputation. You don't want people to think that about you". Funny fact, in many women the pill causes a substantial drop in the libido. I was one of them. I was pretty sure I was straight, I was capable of lukewarm interest, but I didn't find men attractive enough... until I dropped the pill when that particular one was banned because of secondary effects. After fifteen years taking it non-stop. Suddenly, all the right urges where there. So... yes, I find so hilarious that people think "birth pill" = "sexually liberated woman", because I only began to be sexually active when I stopped taking it.

9 years ago #9430440          

They put me on Metformin but I'm not glucose sensitive and it caused me to gain 50 pounds in six months. It literally made all my problems worse. :/ I wish there was an alternative medication besides just birth control.

9 years ago #9431387          

@squirrely

Metformin cannot cause you to gain weight, not can it make your problems worse. Metformin has one job, preventing your liver from raising your blood sugar via gluconeogenesis. You wouldn't have even been put on metformin unless you had glucose sensitivity problems.

1 year ago #9879378          

Dunno where you're coming from, but in my country the medical industry will use ANY excuse to put people on expensive medications they don't need, and then another one to help counteract the negative side effects of the first. I'm sure you want to have faith in the people you work with, but from what I understand, affiliates of the medical industry don't follow science anymore.