Friday, September 16, 2011

More on Unexplained Weight Gain

Thank you to everyone who replied to my question about your experiences with unexplained weight gain....i.e. weight gain that can't be tied to specific outside causes like a side effect of meds or birth control, etc. 

I personally experienced a major unexplained gain like this, and I was curious to see how many others had also experienced it.  Thank you for sharing your stories both in comments and in private emails; it's reassuring to know that many others have experienced it too.

Honestly, I thought our stories would all be very much alike, and for the most part there are common threads running through many of them. But while there were some similarities, there were also differences at times.  So my speculation is that while most stories are related to a couple of common paths, there can also be other paths to major weight gain, paths we have yet to discover. 

But first, let's talk about the most common paths.

Possible Causes of Unexplained Weight Gain

The most common causes of unexplained weight gain seem to be two-fold:

  • Hypothyroidism (overt or borderline)
  • Polycystic Ovarian Syndrome (PCOS). 

(Since I'm about to start a new series about PCOS, I was particularly interested to hear about weight gains associated with that one.)

These two causes seemed to be echoed in the stories sent in.  Most gains in the stories were later discovered to be associated with hypothyroidism or PCOS.  Many of the stories showed how hard it can be to get major gains diagnosed and taken seriously.

But it's not always clear what causes a major weight gain; it's not always due to PCOS and/or hypothyroidism. Best guess is that there is a complex interplay of hormones and metabolic issues, many of which we probably haven't discovered yet. The stories people shared made it clear that sometimes there seems to be something else going on too, something we can't put our finger on. 
My top suspects for unexplained weight gain include adrenal issues, insulin-related issues, and perhaps pituitary issues (since that's the "master gland" that controls everything else). But who knows?   The only thing that is clear is that we have much more to learn about the issue.

According to online sources, other possibilities for unexplained weight gain include:

  • Cushing's Syndrome (body produces too much cortisol, which tends to cause weight gain)
  • Adrenal or Ovarian Tumors (disturb hormone production, which can cause weight gain)
  • Food Allergies/Sensitivities (some people experience weight gain with food sensitivities)
  • Lack of Sleep/Sleep Apena (can cause biochemical changes which impact weight)
  • Stress (chronic stress increases cortisol production, which tends to cause weight gain)
  • Blood Sugar Issues (reactive hypoglycemia, unstable blood sugar, and too much insulin)
It's also worth noting that many medications do result in unexplained weight gain, including some forms of birth control, corticosteroids, antidepressants, anti-seizure meds, heartburn meds, migraine meds, blood pressure meds, and certain diabetes meds.  And of course, fluid retention due to edema, kidney issues, or congestive heart failure can be serious source of very sudden gains. 

But what we are most concerned about here is unexplained weight gain ─ weight gain not clearly related to outside causes like medications, quitting smoking, weight gain left after pregnancy, obvious disease, or poor eating. 

My Story

For me personally, my unexplained gain was probably due to a combination of both hypothyroidism and PCOS at once.  Although always considered "overweight" by the charts, I was never that heavy as a child or young teen ─ I was more of an "in-betweenie." But that changed a few years after puberty.

My large weight gain started in my mid-to-late teens, just after my PCOS symptoms began appearing, and worsened as my PCOS symptoms worsened.  By my early 20s, I had gained a total of about 100 lbs. or so, despite everything I did to try to reverse it.  That's one heck of a weight gain, and that was despite working extremely hard to try and reverse it.

Yet I couldn't get a doctor to take any possible metabolic causes seriously. When I pushed for testing to see what was going on, I was told I was "looking for an excuse for being fat."  Although I eventually got tested and we found "borderline" thyroid levels, no doctors were willing to treat that, despite my overwhelming symptoms of hypothyroidism. And not one doctor ever mentioned the possibility of PCOS to me. 

However, they were all happy to give me diet advice, telling me to do things I was already doing.  When I would try to tell them that, they wouldn't believe me.  So I quit going to doctors to try and figure it out.

Eventually, the weight gain slowed and stopped, then went into a pattern of fluctuating. In time, I finally found a doctor willing to do a trial of thyroid meds, based on my symptoms and my "borderline" labs.  Oh, I felt soooo much better!  After that, my weight was so much more stable. And treating the hypothyroidism seemed to lessen many of my PCOS symptoms.  Truly, it was a "win win" situation for me, even though it didn't make me skinny.

Of course, TSH diagnostic levels are controversial; different providers use different scales to diagnose with, and many care providers do not believe in treating "borderline" levels.  However, I'm a total believer in treating borderline numbers in symptomatic patients now.  In my opinion, too many people have been helped by it to ignore this possibility.  [Always ask for your exact results and the scale they used to diagnose you, and then research the controversy over diagnostic ranges; don't just accept the care provider's word about your thyroid levels being "normal."]

But that's my story.  It has many things in common with other people's stories, including the difficulty in getting care providers to consider such gains as anything other than sloth and gluttony.  But of course, not every story is exactly the same, and your causes may be different than mine.


Large, unexplained weight gains are certainly not unusual among people of size.  Most often, they seem to be connected to borderline cases of hypothyroidism and/or PCOS, but there are probably other causes as well, things doctors fail to consider or don't yet understand.

We need to get doctors to take unexplained gains more seriously so we stop blaming everything on over-indulgence, laziness, and eating disorders.  Those are relevant sometimes, but there has to be some sort of physiologic basis for why some people are so susceptible to gains that are unresponsive to normal nutrition and exercise.

I also wish we could offer better advice to those who experience this distressing situation.  All I can say to someone experiencing it is that you are not alone, there are others who have experienced large gains like this, and it doesn't mean you are a "bad" or "weak" person.  It's just a mystery that we don't understand yet.

Although the understandable response to a large weight gain is to try to lose that weight, it's important to remember that this may not work for you long-term if the underlying cause of the gain isn't discovered and addressed. That's why I encourage people to continue to push to investigate possible physiological causes, and to not be afraid to switch to a new care provider if the old one is unresponsive to your concerns.

And remember that the diet you use to lose the extra gain may end up resulting in even more gain in the long run, even when you only do "healthy" diets and exercise and "lifestyle changes."  All too often, the things you do to deal with the gain only end up amplifying the gain.  How is that advantageous?

So it's not easy to know what the best thing to do is in the face of an unexplained gain like this ─ live with the gain as is and put up with the discomforts and potential health risks, or try to lose the extra weight and risk ending up heavier than you began.

I would not presume to tell you what you should or should not do with your own body; you do what seems to make sense for your body and your situation.  However, I would point out that weight loss is not your only choice. 

A gain doesn't have to mean giving up and being unhealthy; nor does it mean you have to punish your body through starvation, mutilating surgery, or other extreme measures. You can focus on being healthy in nutrition and exercise without centering that on weight loss.  That way, you pursue better health while avoiding worsening the situation via a lot of yo-yoing.

Unexplained weight gains are so mysterious and frustrating.  They are not universal among people of size, but they are pretty common.  Wouldn't it be nice if care providers would actually believe us when we say something is wrong, or better yet, focus on trying to understand these gains better so we could prevent them in the first place?


Evenspor said...

I was just reading the description again of that, "Maggie Goes on a Diet," book, and I am starting to wonder whether all this hype over the obesity epidemic is doing more harm than good, because it contributes to those kind of doctor attitudes you are talking about. Everyone wants to just take the easy "lifestyle" explanation and lay blame instead of actually helping. Your blog has helped me see this.

A few years ago I found out I had high cholestorol. I had a few other health issues I tried to discuss with a doctor to see if an underlying cause could be found. She wouldn't even listen to symptoms. She just said, "It is because you are overweight. Exercize and follow this diet for x months, and you will have no more problems."

I was good and followed their diet and got up earlier every morning to exercize. I had a small child and was going to school, so I had a lot of stress and little sleep already.

I did lose weight, but my health problems increased, and so did my cholestorol levels. Only recently I found out that LACK OF SLEEP CONTRIBUTES TO HIGH CHOLESTEROL. Do you think a single person at that clinic ever mentioned that? Different problem, but I know where you are coming from.

Anonymous said...

I almost wrote to you with my story, but then I decided hypothyroidism was a specific outside cause for the gain!

I lost 80 pounds when I was in college, but right after I graduated I started feeling a bit off. I was dizzy, cold, constantly tired, never hungry, and my hair was falling out. But I didn't have health insurance so I decided it was all just nothing. Eleven months after graduation, I had regained 90 pounds despite eating so little that people worried about me. I finally went to a doctor, who originally thought it was a brain tumor(!), but did a bunch of routine blood work anyway. My TSH came back high, and after I started on levothyroxine the symptoms disappeared. Wish I could say the same for the weight gain!

Your post also got me to thinking about my first major weight gain. I was heavy to start with, but I gained 130 pounds in four years after my periods stopped. The menstrual irregularities were (eight years) later found to be due to PCOS. Looking forward to the PCOS series!

Deah said...

Yes Yes and Yes is the answer to your last question. Thank you for this post. The constant assumption that everyone who is fat or considered overweight in this culture has an eating disorder or is unhealthy, or is a slob, or can't control their food intake is so insulting and humiliating. I really appreciate your article! Warmly,
Dr. Deah Schwartz,

Just me, Leah said...

I've been hypothyroid for about 10 years and have been seeing a consultant for a little while as he thinks I also have PCOS. I've noticed a major gain in abdominal fat (on top of my usual fat) in the last year or so - I look 6 months pregnant. Hoping for answers soon!

Anna Geletka said...

Thank you for being an island of sanity in the endless chorus of "you need to lose weight!"

My Father-in-law has type II diabetes and his doctor has been banging that lose weight drum in a serious way. (FIL is larger than he has been in the past, but he's also in his mid-50s and has had no sudden weight gain). It's driving me nuts but I don't feel that I have the authority to contradict the doctor.

Eat well, move your body. Maybe you'll lose weight. Maybe you won't. If you weren't doing those things before, you'll certainly become healthier regardless of what your pants size is. I don't understand why doctors push losing weight instead of just good diet and exercise?

Anonymous said...

Thank you for sharing your story. I too gained nearly 100 lbs. over the course of my late teens and early twenties, and was frequently told by doctors that I was lying about what I was eating and what I was doing for exercise. Come to find out I have PCOS, Hypothyroidism, and Hypoglycemia. It is still a significant struggle to find medical providers who are well-versed in PCOS.

Ashley said...

I have a "mild" case of PCOS in that my labs are borderline but my symptoms are comparatively severe. So borderline fasting insulin levels = uncontrolled weight gain, soul-crushing hunger, severe brain fog and fatigue, and miscarriage after miscarriage. I had to fight for it and actually turn on the waterworks in the doc's office, but I got my PCOS diagnosis and metformin prescription and life has been pretty amazing since then. Weight has stabilized, I have my brain back, I can eat a reasonable amount of food and feel satisfied, no miscarriages, and I'm on my second successful pregnancy.

In short, I hear you on the treating symptomatic borderline cases. From talking with many friends with PCOS my symptoms were particularly severe, and I couldn't imagine how horrible life would be right now if I hadn't gotten treatment.

Anonymous said...

Now this is interesting. I too have had PCOS, and I'm sure it caused a fair amount of weight gain. But I was a fat child too - does PCOS kick in that early?

Maybe I'm unusual in having had my PCOS correctly diagnosed when I was a teenager. I didn't pursue treatment because everything I read about it was in relation to infertility and I didn't care if I was infertile. Also, there weren't effective treatments around until I was in my thirties. Metformin was very effective for me in stopping the cysts, restoring my monthly cycle and cutting way down on the excess hair.
If you want a truly chilling story of unexplained weight gain, check out . The gain appeared to have been partly caused by a bum thyroid and what must surely be one of the worst cases of PCOS ever.


Ashley said...

PCOS can start manifesting before puberty, but typically kicks in at puberty or later. I started showing symptoms at 15, but I went on the pill at 17 and that seemed to put things in check. When I got off the pill at 22 the PCOS kicked in seriously.

Unfortunately much of the discussion on PCOS is about fertility and weight. I'm far more concerned about long term health (the higher risk of ovarian cancer, for example) and general health. Despite wanting kids and being distressed by my (now resolved, thankfully) infertility, much of my day to day function was destroyed by PCOS until I got on medication. I feel like I'm the only person who talks about the extreme hunger* (at least in a non-shaming way) or brain fog and fatigue.

*By extreme hunger I mean that I would have days once or twice a week when no matter how much I ate an hour later I would be so famished that I'd be unable to focus mentally, became incredibly irritable, had significant pain in my abdomen and was too weak to move more than to curl up in a ball. I'm happy to be on medication forever as long as it prevents that.

Anonymous said...

I was just doing some research on thyroid issues (depending on the clinic I waver between low and low end of normal thyroid, and clinics for the uninsured don't like to prescribe maintenance meds).

Anyhoo, I was reading on T3 and T4 and Synthroid. I found out synthroid's makers have lobbied heavily against other thyroid meds. True, it is cheap and easy to get. But it does only affect T4 levels (which does help with engergy, feeling cold, and hair loss). But unless the T3 levels are also brought up, thyroid-related weight-gain will stick around as stubborn as grease on leather.

yits said...

Would anyone be able to help me? I am a public health student, researching obesity and infertility. I'm currently writing an essay on the rights of an obese woman to have fertility treatment and I need a case study. This would be anonymous and treated in confidence. Has anyone had or know of a situation where a woman has been denied fertility treatment as a result of her weight? I would need a 500 word synopsis of the case (no names, locations etc., that would identify anyone) but would need background information so I have a real life case to debate and apply my argument with theory to a real life case study. Infertility and obesity and my two research passions and I would be grateful to anyone who would be able to help.. Many many thanks for your help and congratulations on this amazing blog!

Well-Rounded Mama said...

Yits, check out this post and its comments. There are several folks who were denied treatment based on BMI there:

I don't have the email addresses for most of the commenters but you might find them in the links with their names. You can check.

I'll be addressing the topic again when we do the PCOS: Fertility Treatments post. Send me your email and we can talk more again off-list.

Rachel said...

Desiccated porcine thyroid tablets has worked fantastically for me for almost 7 years now! It not only regained my strength back, but it also helped me control my TSH levels to normal.

mom said...

Help I have a lap band and I work out almost everyday and still gain twenty pounds Im taking antidepressants I take several multivitamins diet pills and eat hardly anything why am I gaining 20lbs in one month.

Well-Rounded Mama said...

"mom", no one can diagnose why you are gaining weight so inexplicably right now without actually seeing you and learning more about your history. I urge you to go to a size-friendly doctor and discuss this issue with him/her. Get some labwork and see what they say.

Some antidepressants are associated with significant weight gain, so that may be one possible cause. Your thyroid levels should also be checked, and the possibility of PCOS as well.

I don't know what "diet pills" you are on, but they are generally quite harmful and not very effective. You might want to rethink them.

I hope you find some answers. Best wishes.

miss_missy said...

Ive gained the same amount, but have a hyper thyroid, to the point where it's now graves disease..I should be dropping weight and I'm gaining..It's driving me crazy and I can't seam to lose no-matter what I do unless I stop eating all together..It's horrible.

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Unexplained Weight Loss