Hello, I’m vesta44, I moderate First do No Harm, and this is my story about mismanaged medical care and the 4 years I waited to get it taken care of.
Backstory is that I’ve been fat for 30-some years of my life, my blood pressure, blood sugar, and cholesterol have always been in the normal range (I’m 57 now, soon to be 58). In 1997, I had WLS that made me fatter, made my mobility issues worse, and did nothing to make doctors look past my fat for the real reasons for those mobility issues. I was told they were caused by my fat, follow the Nightmare on ELMM Street (eat less/move more) and I would be magically cured.
So for years, I stayed away from doctors unless I had a sinus infection or a serious cold that needed to be treated. After all, who needs to be constantly told that every ailment they have is caused by their fat and that dieting, which has failed so many times in the past, is the only cure?
Then 5 years ago, I met and married a wonderful man. He said I really should get a physical, see how my health was, make sure everything was ok. I had moved to where he lives, so I found a doctor there and made an appointment. Everything checks out normal, other than my thyroid is enlarged, which Dr W says is nothing to be concerned about. Okay, I believe her, until 2 years later, when I’m at my dad’s house for my mother’s memorial service and we’re talking about family health history. My mother has a history of thyroid problems (hypothyroidism), and my dad’s dad had an enlarged thyroid removed that was cancerous. They couldn’t remove all of it – it was so large by the time they got around to removing it that if they had taken it all, they would have cut the nerves that controlled speech and swallowing – he wouldn’t have been able to talk or swallow. They gave him 3 months to live (he was 87 at the time), and he lived to the age of 90.
So I come back, and at my next appointment with my doctor, I tell her all of this family history, and that I’m concerned about my enlarged thyroid. She still says it’s nothing to worry about, and then says I’m using this as an excuse for being fat. Now she and I have had our words about my weight before, several times. I’ve told her my weight is not a topic for discussion unless I’ve gained or lost a large amount in a short period of time (which has never happened). Still she pushes ELMM, still I tell her diets don’t work, diet drugs don’t work, and WLS doesn’t fucking work, what the hell else am I supposed to do? STFU and give me a referral to an enodocrinologist who knows what they’re talking about when it comes to this kind of thing. Dr W refuses. I get mad and walk out on her, go home and think for a week, find my own endo, then go back and demand that she give me a referral or I’ll find another doctor that will. She reluctantly gives me the referral.
I see the endo, we have an ultrasound done, and yeah, my thyroid is enlarged. Dr A says it’s pretty big and it should come out. I’m not real hip on surgery, but she gives me the name of a surgeon who does thyroidectomies all the time and she’s good. I talk to Dr M, we decide to wait 6 months, do another ultrasound, see if my thyroid is staying the same or growing.
Well, the 2nd ultrasound showed that my thyroid was growing, so we decided it had to come out. Scheduled the surgery, was supposed to be 3 hours, took 4 1/2 hours. My thyroid was so large, it had almost wrapped around my wind pipe, and my esophagus. Dr M said she was surprised I could swallow anything other than liquids, it was compressing my esophagus so much. She also says it should have come out when it was first found that I had an enlarged thyroid.
Just goes to show what you know, Dr W, nothing to worry about, right? I guess I should have just let it keep growing until I couldn’t eat at all, then maybe I’d have lost weight like Dr W thought I should (I am so glad I fired her). So my enlarged thyroid is gone, I’m started on Levoxyl and following up with my endo on that. Everything turned out fine, but only because I finally demanded that my doctor take my concerns seriously and give me the referral to someone who knew more about my condition than she did. (and I’m still avoiding general practitioners, I can’t find one in this area who isn’t fat-phobic and practices HAES).
Enlarged thyroid nothing to worry about – Get a 2nd opinion!
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Posted by vesta44 on September 19, 2011
http://fathealth.wordpress.com/2011/09/19/enlarged-thyroid-nothing-to-worry-about-get-a-2nd-opinion/
Notes from the Fatosphere- It’s About my Heart
- Jen’s take on Online Dating (While Fat).
- I'm not your metaphor
- Evans, Workfare and fatshion boycotts
- Shop Til You Drop: Be A VIP & Take 25% Off At Dorothy Perkins!
- Conformity? No Thanks.
- Waiting Wednesday
- Fatties and Friends Kicking Global Butt
- The Last Supper Syndrome
- the HAES files: you gotta have heart!
esteleth
/ September 19, 2011I feel like I could have written this post! I’m guessing I’m younger than you (I’m 26), and I got told that my thyroid wasn’t just enlarged: it was cancerous.
When they pulled it out, my surgeon after the fact told me that (in his opinion) if I’d waited another six months it would have definitely gone to my lymph nodes, which means I would have been facing metastasis.
Yeah.
But I was totally using my weight as an excuse.
KellyK
/ September 19, 2011Oh, my. That’s really horrifying. I’m glad you were assertive and got a referral to a good endocrinologist who took care of you. Did you ever go back to Dr. W to let her know why you fired her? I don’t know if it’d make a difference or not, but it might give her something to think about.
vesta44
/ September 19, 2011KellyK – I wrote her a 2 page letter and sent it to her, explaining why she was fired, listing bullet points of things we had disagreed about over the 4 years that I had been her patient. I never heard back from her. Last winter, when I had strep throat, I called the clinic and said I needed to see a doctor, I had a sore throat, and I would see anyone but Dr W. I go to the clinic when I have a problem and I see whoever is available, as long as it isn’t her. I don’t care if I have to wait a few days longer to see someone else, I refuse to see a doctor that refuses to take my concerns seriously. Thank Maude there was no cancer in my thyroid, it was just really enlarged.
Gary
/ September 19, 2011Good thing you got a second opinion. Too many people do not. The actual removal of the thyroid is supposed to make you gain wait I understand. Is the medication to counter that?
vesta44
/ September 19, 2011Gary – The Levoxyl replaces the thyroid hormone that my thyroid would have been making had it not been removed.
greyships
/ September 19, 2011I’m glad you got that taken care of! My husband had an enlarged thyroid, too, but it was a cancerous growth which had wrapped around his windpipe in a similar way. It’s a very curable cancer if caught early (he’s had his thyroid removed and is in complete remission).
He’s on Synthroid and another drug (maybe levoxyl?) and once the correct levels were found for his body, he lost weight naturally and has a lot more energy. (He was tired out CONSTANTLY when ill.) I hope you let your endocrinologist know if you’re feeling worn out or gaining weight; meds are adjustable and wow, do they make a difference when you have the right amount of hormones.
vesta44
/ September 19, 2011greyships – I have follow-up appts with my endo to check my TSH, T3, and T4 levels to see if the dosage of Levoxyl needs to be adjusted (6 weeks after surgery, then again in 6 weeks, then in 3 months, etc as needed). If everything works out, I should only need to see her once a year unless I lose a lot of weight (or gain it) since the dosage is dependent on weight (I didn’t know that). I’m hoping I get my energy back, I’ve been tired for years and didn’t know why (didn’t matter how much I slept, I was still tired all the time).
Palaverer
/ September 19, 2011Thanks for sharing your story. I was diagnosed with an enlarged thyroid 11 years ago. I haven’t seen an endocrinologist since; only GPs for my synthroid. As soon as I get insured in a couple of months, I’m going to find myself an endo.
Kita
/ September 19, 2011Hey, I’m really excited about this article, but I had to copy and paste it into another window because this font is totally unreadable in Firefox, plus it’s extremely tiny
vesta44
/ September 19, 2011Kita – I changed the theme, I hope this helps the readability in Firefox.
erylin
/ September 20, 2011vesta what part of the country do you live in? i’ll put my ear out for a good dr…i actually finally found one and it makes all the difference in the world…..for the first time in 15 year i have my asthma under control….no i dont wheeze because im an out of shape fatty i wheeze because i only use 1/3 of my lungs you jackass /headdesk.
vesta44
/ September 20, 2011I’m in central MN, about 40 miles west of St Cloud. I have a good endo, she’s not fat-phobic at all, thank Maude
I just don’t have a GP right now. I could ask at the clinic if one of the other doctors there isn’t fat-phobic,but I’m not sure I’d get any good answers. And finding a doctor now who is willing to take Medicare/TriCare, with the government cutting what they’ll pay, isn’t going to be easy either.
Zen
/ September 20, 2011I have a question regarding how having an enlarged thyroid feels. For you, did it ever feel like you had something stuck in your throat, right around that area?
I was just recently diagnosed with hypothyroidism and while I mentioned to my doctor that I’ve been feeling as if there’s something stuck in my throat for quite some time, she kind of brushed it off. And it worries me. Sometimes it’s hard to swallow because of it.
vesta44
/ September 20, 2011Zen – It was difficult to swallow at times. I didn’t realize how difficult it had been until my thyroid was gone and I got to eat actual food again (I was on a liquid diet for the first 2 meals after surgery). I even had difficulty swallowing pills, I’d have to eat a couple of crackers and drink a large glass of water or tea to be sure I washed them down all the way, otherwise they’d get stuck.
I’d ask for a referral to an endocrinologist. If your thyroid is enlarged, they’ll find it and order an ultrasound to see how enlarged it is (although they can tell pretty well just from physically feeling that area on your neck).
Zen
/ September 20, 2011I’ve had that same problem with pills ever since I had dry sockets in high school, actually. I saw your other blogpost about this and nearly burst into tears when I saw you had trouble with it too. I also sometimes have trouble swallowing in general.
I’ve never really had someone feel up my throat to check for an enlarged thyroid, but I think I will definitely try to get an appointment to check that.
If it’s not too much to ask, was your thyroid visibly enlarged? I’m afraid it could be hidden under the fat on my neck.
vesta44
/ September 20, 2011Zen – It wasn’t visible that I could see, and I don’t have a lot of fat on my neck. But a good doctor should still be able to feel if your thyroid is enlarged, even if there is fat on your neck, the feel is different, from what I understand.
DebraSY
/ September 27, 2011Oh, Vesta, this is my first knowledge of this story. What a travesty! If you do get your energy back, a lawsuit might be in order for Dr. W. I don’t know how they’d calculate damages, but her treatment was just unconscionable.
vesta44
/ September 27, 2011Debra – To sue her, I would have to have other doctors who agreed that what she did was malpractice, and since I wasn’t really harmed by waiting 4 years to have my thyroidectomy (after all, a reduced quality of life isn’t real harm [/sarcsm]), I don’t think I’d get anything monetarily, nor would she get even a reprimand or anything like that in her record. I’m just glad it’s done and that there wasn’t any cancer or other disease, and that it was removed before it grew so large it couldn’t be entirely removed. I’m not seeing Dr W anymore, even though I still see my neurologist and my orthopedist at the same clinic (if I have any other issues where I need to see a GP, I call the clinic and request to see any doctor but her). At least I have a good endo and don’t have to rely on Dr W for any of that.
mamabigdog
/ October 3, 2011I am in the middle of something very similar. About 7 weeks ago, I started feeling this pressure in my neck. By three weeks ago, my speech and swallowing was impacted and the pain was pretty bad. My regular doc (the same one who ignored my long term acute anemia – iron at 6 when it should be over 100) said my neck was “too fat” for her to do anything. She sent me to an ENT who ran a tube down my throat, despite the fact that I told her the throat itself wasn’t sore, only to tell me that GEE! Your throat has no infection! Must be a muscle-skeletal problem. Uh, NO. It’s not.
I emailed my blood specialist- the one I had to find on my own who is now properly treating my anemia with IV iron. He got me booked for a thyroid ultrasound, and lo and behold, what do we find? No fewer than THREE nodules, all larger than marbles, all qualified for biopsy. I’m now awaiting the endocrinologist referral to figure out what they want to do. Since that time, the pain got better for a few days, but now its coming back and I’m expecting to be voiceless again in just a few days if it goes like it did the last time. I depend on my voice for my job, and I’m really concerned about damaging it.
That said, I could tell you 100 more tales of doctors treating be badly due to my weight. My husband is heavy too, and even he gets more respect than I do, but he still has trouble. These doctors would rather see me die than have to touch or treat me like their oath says they should.
healthcare = disappointment
/ October 4, 2011Argh this makes me so angry. Inept doctors are the bane of my existence.
If I may add a story: when I went to a psychiatrist for the first time in my life as a teen, she spend a significant amount of time, on every visit, telling me that I need to lose weight and insisting that I exercise. I mean, JESUS, I was a 16 year old who’d just had a serious nervous breakdown,attempted suicide, came from a rather dysfunctional family and has been diagnosed (by the doc herself!) with severe depression, you’d think she had better things to discuss with me than the extra 10 kgs I had back then. (Not to mention that depressed people usually hardly find the energy to roll out of bed to take a wee, so advising them to exercise is a laughable idea) If she considered my weight such an important issue, she could’ve connected the dots and, seeing how both depression and weight gain can be symptoms of hormonal imbalance, she could’ve run some hormone tests. But no.
(she had also done a lot of incompetent and harmful things to me, but that’s another discussion)
None of the psychiatrists I went to later suspected somatic factors to my mental state either.
When I got conscious and motivated enough to recover, after some years of unsuccessful therapy, I finally got around to checking my general health, and it – obviously – turned out I do have serious hormonal imbalance . Once I started treatment both my weight dropped and my depression went away, unfortunately leaving a whole lot of terrible memories and a few years of my life lost to apathy.
Doctors and other “commenters” often say that fat people use hormonal imbalance as an “excuse to be fat”. No, fat people worry about their health just as much as everybody else, and when they see something that might be a symptom, they want to get it checked. Weight gain IS a symptom of many diseases. Somehow the general idea is that you should first torture yourself with diets (ones that skinny people would never agree to go on because of how unpleasant they are) and exercise before you may timidly suggest that maybe, just maybe, your fatness comes not from being a horrible lazy person, but from an actual health problem. It’s not a perfect analogy, but it’s like telling somehow who feels pain during PIV intercourse to stop having sex for a year before they get their genitals checked, because maybe they’ve been “overindulging” – NOT ONE doctor would do that, because running some tests is just much easier and more humane than limiting someone’s life. Yet this is what is done to fat people – instead of just taking obesity as a possible symptom and checking “just to be sure”, they make people go through a nightmare, because they assume we deserve it. WE DON’T. We deserve to have ALL of out symptoms taken serious, for fucks sake, this is what we PAY for, isn’t it?
Tracy B
/ October 25, 2011This sounds like what I am going thru, except that I can’t GAIN weight. My hair is falling out, my skin is so dry that sometimes it bleeds. But my doctor says my enlarged thyroid is nothing to worry about. Many of my family members have had problems with goiters. When my mom had her second surgery, hers was so bad that her parathyroid had been absorbed! I have trouble swallowing, and my throat always feels so tight. After reading all this, I think I will contact my insurance company and get a referral directly from them (it helps that my ins. co. is great about this stuff!)
Fredricka
/ November 12, 2011Hello I was trying to have WLS .my insurance company denied me and said I should go see an endocrinologist.well I went thinking nothing was wrong .all the time knowing I have been dealing with some sympton of thyroid problem.i have been extremely tired , dizzy,hair loss weight gain .when iam on dieted so I can have weight loss surgery.going to the gym everyday workout for two hours watching my clories and nothings helping.i stared out thinking weight loss surgery will help me feel better.now iam worry about my thyriod .i went to the endorcrinologist and he is sending me for an ultrasound and blood work.he said it feels like an enlarge thyriod.i hope all goes well for me.now iam starting to have anxiety.did you ever get your weight under control.i hope you are doing find.sorry so long.
Melissa
/ February 6, 2012I just had an unltrasound which showed an enlarged thyroid but my GP says its nothing to worry about since my thyroid blood test came back normal last June (2011). Is this something I sould push or worry about. I dont known who to trust, Im not a doctor, ya know?
vesta44
/ February 6, 2012Melissa – It depends on how enlarged your thyroid is. Mine was very large, and my thyroid levels were normal too (but I also had a family history of thyroid cancer). I found an endocrinologist and insisted my doctor give me a referral to her. She looked at the ultrasound that had been done, and had another one done 6 months later. My thyroid was larger at that one, so we decided it needed to come out.
If your thyroid is getting larger, then yes, it is something about which you should worry. And the only way to know if it’s getting larger is to have ultrasounds done of it at intervals to check the growth. Don’t leave it to your doctor – if you can get a referral to endocrinologist, see one and have her/him track it, they know more about it than a GP would.