Lilacsigal writes…
At the start of 1998, I was a large but healthy postgraduate student, aged 24 – I was a pear-shaped 90kg at a height of 169cm, (a BMI of 31.5) I didn’t own a car and cycled everywhere, and had no health issues. Over the next few months, I started to feel depressed and lethargic, and started to gain weight, despite eating less because I was too tired to eat. I exercised less, as I was too tired to cycle, and was gaining huge amounts of weight.
I went to the University Health Clinic again and again, telling them I was exhausted and depressed, and after six months of three doctors telling me I was just overweight (and one telling me that if I didn’t lose weight I would die), the doctor I saw most often put me on antidepressants and sent me to the counselling centre. By the end of 1998 I was so exhausted that I would spend days at time in bed, unable to move, and was still gaining large amounts of weight. At this stage, I had gained 35kg – over a third of my body weight again – in less than a year. According to the doctors, this was because I ate too much and didn’t exercise.
They referred me to a dietician, but I couldn’t take her advice because I was too tired to shop or cook. By now, I had to put my government postgraduate scholarship on hold and go onto sickness benefits, as I could no longer read more than a few pages at a time without sleeping – previously I had been reading between 2 and 4 books a day. As 1999 went on, I found an antidepressant that helped me not have bouts of suicidal thoughts, though I was still exhausted and hopeless. I had now developed severe dizziness on top of the weight gain and lethargy and was spending most days in bed.
I would emphasise that at no time did I disagree with the doctor’s assessment that the weight gain was my own fault – I thought that I was being lazy and obviously eating too much.
My parents and friends (with the exception of my girlfriend) were also concerned about my weight and thought that I should exercise more. With the dizziness and extreme fatigue, this was impossible, and by early September 1999 I weighed 135kg (a BMI of 47.5). The doctor thought I might have Chronic Fatigue Syndrome, but at this point, she became concerned with my dizziness and sent me to an audiologist to have my middle and inner ears checked. The audiologist checked my hearing and performed a few basic tests, then was so concerned about my dizziness that he sent me for a test to see if I had a brain tumour. This test was negative, and the audiologist performed more balance tests – in the process, he put his hand under my ear, his thumb touching my throat, and noticed that I had a swelling on my thyroid.
The audiologist – the only health professional not focused on my weight – was the only one to notice that I had a 4cm palpable growth on my thyroid.
Back to the doctor for a thyroid hormone test – the results came back as abnormally low. Low thyroid hormone produces fatigue and weight gain. She then sent me to have an ultrasound, which revealed the growth, and I was referred to a thyroid specialist. This specialist did not focus on my weight, but was very professional and helpful – I had further tests, including a nuclear medicine scan and several biopsies, all of which were inconclusive. On December 30th, 1999, now weighing 145kg, the left half of my thyroid was removed. It turned out to be a malignancy, which had grown a full centimetre in the 12 weeks since the first scan. Fortunately, further scans and biopsies showed that the malignancy had not spread beyond the left half of my thyroid, so I did not have to have radiation therapy.
The specialist told me that if my treatment had been delayed another five weeks, the tumour would have expanded past the thyroid, and from there it is a lot more difficult to treat.
It’s taken me a long time to recover from the anger and suspicion of this treatment, and I moved to a new town with my girlfriend and saw new doctors who had no problems with my weight – they were focused on my health, instead, which was a pleasant surprise. I still have to have blood tests, thyroid palpation, X-rays and ultrasounds at regular intervals to make sure that the cancer hasn’t returned, and it’s taken years to get my thyroid medication right, but I am again in good health. I’m still on anti-depressants, though, and now have no contact with the friends that were pleased to find out that I wasn’t just fat, I had a “real disease”, and am still angry at my parents for thinking that my weight gain was a fault of mine, rather than supporting and helping me when I was seriously ill.
First, Do No Harm 
Karen
/ March 10, 2008This kind of thing makes me want to cry. All of these things are symptoms. And, being on the normal side myself, I wonder, if I gained that much, would I get taken seriously, or would I just join the ranks of the fatties who are to lazy/gluttonous/stupid to take care of myself? This isn’t an obesity crisis, this is a general health care crisis. We have a shortage of doctors who actually know what they are doing, and too many who don’t even have the first clue about examination and diagnosis.
DivaJean
/ March 10, 2008Even sadder is the fact that the whole medical model seems to be skewing towards “obesity is what makes them ill” – and I fear that in situations such as this- where the misdiagnosis could have been fatal- more doctors will get away with poor patient care.
Shade
/ March 10, 2008Ouch. This is frighteningly similar to my story. My tumor was pituitary, not thyroid, but the rest is almost identical to my experience. It took a doctor that was willing to “look past the fat” to do the necessary tests.
I really distrust doctors now…all medical professionals, actually. And that’s just sad.
Shinobi
/ March 10, 2008That’s really heartbreaking. My boyfriend has severe hypothyroid that went undiagnosed until he was 13, until then they just thought he was fat and lazy. It just drives me bonkers that the medical establishment continues to get away with this.
I’m so glad that the audiologist at least was on on the ball.
Fatadelic
/ March 11, 2008Mum had a thyroid tumor back in the 80s which caused weight gain. Fortunately, hers was benign, but she did receive similar dismissiveness from doctors until the tumor had grown large enough to be visible and look like goitre.
Ducky
/ March 11, 2008OMG, does this story sound familiar. It took me three years to be diagnosed with hypothyroidism even WITH a huge goiter that sprang up out of nowhere. Over and over, I was told I was just fat and lazy and depressed. One endocrinologist even accused my mother of “enabling me” by believing my wild stories. That was a horrible time in my life, when I kept hitting rock bottom…and then hitting rock bottom again. But it did teach me to stick up for and advocate for my self.
Erin
/ March 11, 2008Wow. That’s really the only thing that comes to mind. I’m so relieved that a doctor FINALLY figured out what was ailing you. And I’m really glad I found this blog…thanks to my Google Reader. 🙂
It’s very scary because…well. I have an eating disorder and I’m having insane pelvic pain that can be pretty debilitating at times and my doctors seem to think I just strained a muscle. Doesn’t FEEL like a muscle sprain. It feels like something is horribly wrong. The depression & ed have seriously fucked up my life. But I take full responsibility for both of those things honestly. So I guess I fucked up my life. I was unable to get out of bed for the latter half of the semester. I couldn’t do anything. And now that I’ve withdrawn…it takes everything to get me in the shower (in the evening…not even in the morning.) It’s really scary when you get to a point where you see everything falling apart and you still can’t stop.
I don’t know if thyroid problems are genetic…but I know my grandmother, half my aunts, and most of my female cousins have serious problems with their thyroids and weight fluctuations. Hopefully my doctor checked mine out…
It’s hard battling the healthcare system, because as someone who knows absolutely nothing about the field, I feel completely vulnerable and defenseless up against doctors. I do trust them because…I feel like I have no other alternative. If they don’t know…I sure as hell don’t.
shinobi42
/ March 12, 2008Erin,
Your doctor works for you! If you don’t know for sure they checked out your thyroid then you should call them and ask if they did, and if not, go in and ask them too. With a family history you have a right to be concerned. It doesn’t hurt to get a second opinion if you don’t think your doc has solved the problem.
O.C.
/ March 13, 2008And Erin, you didn’t screw up your life by having an ED and depression. Did you choose to have an ED? Did you choose depression? NO! No more than the folks above chose to have tumors! Depression is an illness that needs treatment, and so is your ED. It is probably very hard to motivate yourself to seek help, but you really really need to try, for yourself and for all of the people who love you.
Trust your body. If the pain you’re experiencing doesn’t feel like muscular pain it very well might not be. I experienced essentially the same thing, and after being told over and over again that it was “only” muscular pain caused by my fat, I finally found out it was really bad endometriosis, that screwed up my reproductive system. Try to find a good OB/GYN and stick with it. You know something isn’t right with your body. Eventually you will find a doctor who will help you find out what it is.
It sucks that we’ve got to be this strong, and persistent, to get the medical care that should be our right. But at least we have each other to cheer us on and to lean on. I don’t know you, Erin, but I’m worried about you and I care about what happens to you. Hang in there, and don’t let the bastards get you down.
Embi
/ March 17, 2008You poor thing! But thank goodness you met the audiologist when you did. It’s bad enough having a life-threatening disease but when you get blamed for the symptoms instead of helped, it’s just appalling. I really hope that now your illness is being treated, your life is getting back on track.
Nowhere in the same league as you, but just over a decade ago I was, like you around 80kg but basically healthy, and prescribed an antidepressant that had the side effect of raising my blood pressure and gaining weight – this was a known possible side effect but for nearly 10 years I was told my weight gain was the reason I had high blood pressure. Like you I never questioned the doctors over this, and I felt like a fat lazy cow for not being able to lose the weight. Then last year I went off the medication and within weeks my blood pressure returned to normal. I’m also gradually beginning to lose some of the 40kg I gained over this period. In other words, the weight gain was a symptom of the problem, not the problem in itself.
Sharon
/ April 2, 2008I’m taking an antidepressant Zoloft; I’ve been gaining weight ever since. Is this the same antidepressant you were on when you started gaining weight? I’m thinking about switching to a different medication, but I’m not sure.
Meri
/ April 15, 2008This is *exactly* my story, except that my doctor has only one phrase for me – eat less and move more. It wasn’t until I got thysterical in his office and demanded he find a medical explanation for the weight gain, hair loss, exhaustion, and skin issues that he palpated my thyroid (for the first time, after gaining weight steadily for 5 years), and found a *giant* mass.
After my surgery and treatment, at my next visit, he asked about my thyroid, and then – THEN – tried to pass the whole thing off as a medical condition that WE had been tracking for a while, that finally needed surgery to resolve.
Um…no, buddy. You couldn’t see past the fat woman and your own prejudice. When a woman is gaining weight, clearly she is simply not in control of her eating, and it is her own fault for being fat and lazy. I am still angry, 4 years later, that I spent years with a mass in my thyroid, faithfully reported all the symptoms of thyroid disease at every physical, and was utterly dismissed because of the very symptoms the thyroid issue caused.
Meg Thornton
/ January 9, 2009I read this, and I’m both annoyed and relieved. Relieved (and slightly upset at myself for being so) because I’m Australian and our health system is run on a different set of principles to the US one. Annoyed because for gods sakes, a thyroid function test can’t be *that* hard to run – all it requires is a blood sample. I have an underactive thyroid myself, and I discovered this *inadvertently*, when I went to the doctor complaining of depression and the first thing the doctor did was send me to the next-door pathology collection site for a blood test to check my thyroid function. The results came back, I had an underactive thyroid, and I’ve been on thyroxine ever since. (Turns out the depression was another underlying problem, and I’m now on a separate lot of meds for that, and my GP gets the fun of trying to balance the two).
I’ve since come to feel that a thyroid function test should be a pretty standard part of any comprehensive check-up. I mean, come on, this is the gland that effectively sets the clock for your metabolism – if it plays up at all, the knock-on effects are many and varied. Knowing about such things beforehand (or even just having a baseline to check against) would probably be a very good idea.
lilacsigil
/ February 20, 2009@Meg Thornton.
You’ll be sad to know that I’m the OP and I am in fact Australian! All of the above happened in Melbourne. The only good thing about it, I suppose, is that I didn’t go broke trying to find out the problem, as I would have in a country without universal healthcare.
SayWhat
/ December 23, 2010A very similar thing happened to me. I spent 5 years with an excruciating headache, numbness and weakness in my limbs, and other neurological symptoms. My GP spent those five years telling me I was an insane hypochondriac who needed to lose weight and be on antipsychotics.
I had to quit my BSc. degree 2 months from completion, quit my job and go on sickness benefits at the age of 21, that was three years into the onset of symptoms. I was sleeping up to 20 hours a day, my family was being physically and mentally abusive to me (including withholding food) because I was “fat, idle and pathetic”.
At 23 my doctor wanted to have me committed because of my ‘delusions’ of illness. He said “Fine, I’ll send you to a headache guy, he’ll prove you’re lying”. Headache guy… sorry… neurologist, took one look into my eyes with an opthalmoscope, went white, and said “I want you at Hospital X in two days. If we don’t sort this out you’ll stroke out by next weekend”.
The pressure in your CSF is supposed to be between 8-14. Mine was at 40. (and continued to get higher until it was unreadable at the time my shunt was fitted.)
My sight was damaged irreparably, my gait is altered, I have arachnoiditis from repeated lumbar punctures, kidney damage from the high dose of drugs I was initially put on to make it safe for me to like… breathe and walk, I have nerve damage wherever I have nerves, sensory issues and permanent dizziness and sickness. All because of fat hate.
Sorry I’m not the only one. It kills me that it’s 2010 and women are still no more than their waist size.