Moni writes:
A little background on me. I am 30 years old, single, drive a school bus for a living, and am super morbidly obese. Now that we have that out of the way, I wanted to provide my story in the hopes that it may encourage others to not give up and push their doctors.
Ever since hitting adolescence, I have put on weight steadily. It got to the point that my weight gain actually concerned my mother who had brought me to the family doctor. The family doctor basically told her that I was going through regular puberty and things would even out eventually. The weight continued to creep on, sometimes fast, sometimes slow, but the thing that never really changed was my diet. All through my childhood, I ate a sensible diet. My mother loved to cook (still does) and always prepared healthy low fat meals. When I hit middle school, and my body started changing at the young age of 11, I started to put on weight even though all that I was eating was at home. My mother rarely kept junk food in the house – no sugar cereals, limits on cookies and other sweets – and I was no different from any other kid.
When I went to high school, my diet did change a bit. I indulged as any normal teenager would and ate the school lunch a-la-carte. My friends ate french fries and a burger for lunch, so did I. My diet was still fairly regulated for breakfast and supper, and we rarely ate out as a family. I still gained weight. I went from a size 12/14 to a size 20/22 by the time I graduated and went to college. I suffered through all the normal testing procedures, Thyroid, Adrenals, even an ultrasound to check for Poly Cystic Ovarian Syndrome (PCOS), in hopes that we could find some reason for my weight gain. Everything came back normal. So, off to college I went.
Surprisingly, I did lose a bit of weight in college and went down to a size 16/18 by the time the summer rolled around, but even being active all summer at an internship I ballooned back to a 22/24 in the span of 10 weeks. The weight just kept creeping. Every now and again I’d stabilize and remain the same size for a while, then it would continue to increase. Again my diet was regularly decent food and I hardly ate at all on some days. By the time I exited college, my weight had steadily increased and I am now sitting at a 32/34 pant size.
I finally got insurance on my own and went to the doctor myself. I started to go see specialists, starting with an OBGYN who confirmed that I had all the symptoms of PCOS, yet the ultrasound STILL showed NOTHING, and I was growing hair in weird places and had excessive acne. My period had also dissapeared and would rarely make an appearance. My OBGYN put me on Metformin to help my PCOS. Yet still, my Thyroid and other tests run would all come back normal, normal, NORMAL. ARGH!
I went to an endocrinologist in the hopes of finding something wrong with my Thyroid, he brushed me off. I never returned. I went to a second endocrinologist and THIS one treated me like I had diabetes and was in denial, when I clearly had the medical tests to PROVE I was not diabetic, but taking the meds for PCOS. I didn’t stay long with him, he also refused to run anymore tests saying that Thyroid problems were “overrated” and that it wasn’t a “cure” for obesity. Noone wanted to listen to me that I felt something else was wrong. I KNEW my thyroid probably had issues, but because the numbers came back fine, I was told repeatedly, Eat Less, Move More and have Surgery to help your weight.
I’ve tried the “eat less move more” philosophy. I worked out with a personal trainer for 9 months, and lost 3 pounds in that time frame. I ate healthy, and STILL did not lose weight. What is wrong with me? Again the typical answers – “Stop eating junk food.” Apparently according to them I just eat nothing but icecream and cookies right?
I went to a third endocrinologist. This one actually listened to me and started me on a medicine to help the abnormal hair growth (Aldactone). He also made sure to run his own tests and found my vitamin D level to be low. My thyroid was still within the “normal” range, so he did not want to try thyroid medication at the time. However, that all has changed in the last few days.
I went back to him for a follow up, and again begged him to PLEASE let me try a low dose thyroid medication just to SEE if it will help. He then did something that actually shocked me. He consulted my chart and remarked, “Your last Thyroid test was borderline.” Wait…. So, That means…. I am NOT crazy? Hardly daring to believe that they may have finally found SOMETHING conclusive, he went and examined my neck. After having me take several sips of water, he determined that he DID feel something wrong with my thyroid!!!!!!!!! He said it felt SWOLLEN! I could have jumped for joy except the exam table was too high! I am starting on a low dose of Synthroid to see if it will help my numbers. I know it is not a weight loss CURE, but HE LISTENED TO ME!!!!!!
I’ll keep you posted as to how the medication works out. This has come after YEARS of repeatedly telling doctors something is wrong, and someone finally listened!
jaed
/ August 12, 2012Moni, if your endocrinologist hasn’t done this already, consider getting a full thyroid panel – not just TSH, but T3, T4, and in particular free T3. This is important because some people who are hypothyroid have normal T4 (and therefore normal TSH test results), but have trouble converting it to T3 (which is the active form of thyroid hormone). If your T3 levels are lower than would be expected given your TSH and T4, you may need to take T3 supplements instead of or in addition to T4. (Synthroid is T4.)
Also, be aware that the “lab reference ranges” for TSH are thought by many to be too high – that is, a “normal” TSH in the higher end of the range may actually indicate abnormally low T4 levels. (TSH is inverse to thyroid levels – the higher your TSH, the lower your thyroid levels.) The current lab standard calls for no higher than 3.0 (though some doctors still go by the even higher older standard of 5.0). However, if your TSH is above 2.0, your thyroid function is questionable.
The Bus Driver
/ August 12, 2012This is Moni – My last test showed my TSH at 2.5 or so (not exactly sure the exact number but that was as of Monday last week – I’ve been on Synthroid for 5 days now, and feel fantastic. We’ll see how well it goes – he has ordered the full panel for my next blood test in 6 weeks.
vesta44
/ August 12, 2012Moni – My thyroid was enlarged (I too had a multinodular goiter) and had to be removed. I’m now taking 200 mcg of levoxyl 6 days a week (it’s taken an adjustment every 6 weeks since January to get to that level). My TSH is now 0.62 and my T4 is 1.2. My endo is satisfied with that, and if those numbers are in that same range when I have my next labs done in October, I won’t have to do any more medication adjustments, and I probably won’t have to have any labs done for 6 months (I’ve been having labs done every 6 weeks since January trying to get the dosage of levoxyl worked out). I know I’m feeling a lot better since I had my thyroid removed and started taking the medication (but I also added a couple of supplements, so I don’t know if those are also having an affect on how I feel). I do know that it’s much easier to swallow now that my thyroid is gone. It should have been removed when it was first diagnosed as being enlarged 6 years ago, but my then-doctor said it was nothing to worry about. She was wrong, as it was getting larger all the time. So if you have insurance that will cover it, it might be a good idea to have ultrasounds done at least every year to see if it is getting larger or staying the same size.
bluepotatoes66 (@bluepotatoes66)
/ August 12, 2012Moni: Sometimes it takes awhile for TSH tests to show what the problem is. Mine kept coming back normal, normal, normal, until one day they weren’t and I, fortunately, had a sympathetic doctor and nurse practitioner who believed me when I said that there was no way my fairly sudden abnormal weight gain had anything to do with my diet because I had actually started eating healthier a couple weeks before it happened. I’m on a low dose of synthroid and it has stabilized my weight–I have been within a 10 pound range for the last couple years now. I can’t lose any weight consciously, but I’m not gaining it either.
Jaed: This is very interesting, though I am not quite sure how I could convince my doctor or nurse practitioner to get my T3 levels checked, as the synthroid brings my thyroid into the “lab reference range”, but just barely below the standard. I don’t have an endocrinologist. Any suggestions on how to convince a general practice medical professional that this might be a good idea?
vesta44
/ August 12, 2012bluepotatoes66 – My doctor wouldn’t give me a referral to an endocrinologist, so I looked online for endos in my area and then called until I found one that took my insurance. Then I DEMANDED that my doctor give me a referral or she was fired and I would find another doctor who WOULD give me a referral (she gave me the referral to the endo).
jaed
/ August 13, 2012I’d start with the pianissimo approach. If you are still having symptoms of hypothyroidism – feeling cold, dry skin and hair, low energy with no explanation, and so on – mention that, and state that you’d like to make a trial of a higher dose of synthroid to see whether it helps resolve your symptoms. If they are reluctant, ask why and see whether you can address that.
If they blow you off, you can try a more aggressive approach as vesta44 suggests, or else switch practitioners.
Also, be aware that you can go to doctors outside your insurance coverage if need be. (At least if you are in the US.) An office visit for a prescription can be surprisingly cheap from either an MD or an alternative practitioner (OD, etc.), particularly if you bring your test results with you. (You are legally entitled – again, assuming you’re in the US – to copies of all medical records including your tests.)
(MDs are cautious about thyroid dosages because going to the other end and becoming hyperthyroid can be very dangerous. But there’s not much risk of that happening if your thyroid levels are low enough to keep your TSH at the high end of the range.)
The Bus Driver
/ August 12, 2012Thanks! I’ll look into that. Since this is the first time any of my doctors have taken me seriously about the possibility of a problem, I’ll definitely ask him about it in a few months when I see him again. Unfortunately, all my numbers came back normal (though now, I guess in the higher range of normal), so I’d be brushed off. I even told Docs that when I swallowed, I felt a lump inside my throat, but that had fallen on deaf ears. Here’s hoping this is an answer!
kprofou
/ August 12, 2012Moni, I went to my GP after years of trying various endos and OB/GYNs and just being told that if I lost weight all my problems would go away. I knew what I was eating was not causing my weight gain, but the doctors wouldn’t listen. Like you, I told my doc that I wanted to my thyroid treated and I’d try every doctor in a 100 miles if I had to, but he treated me and the very first month my period came back and I’ve had 28 day cycles since then, except for when my thyroid meds needed to be adjusted up. It took a long time to get the dosage right, but I think I’m finally close. The bad news is that I haven’t really lost any weight, but my weight has been very, very stable. My mood has also been very stable, I had some issues with depression prior to my thyroid being treated.
Screw normal numbers, doctors should treat the symptoms, not the numbers. Check out subclinical hypothyroidism. I think eventually, doctors will figure out that a lot of large women are suffering with it.
Good luck!
O.C.
/ August 12, 2012Isn’t it sad how we’re so relieved when we’re finally heard? When that should be expected? But I’m so glad you finally found a good doctor who’ll listen.
I’ve decided that when that happens it’s important to tell the doctor exactly how appreciated and unusual they are. I’ve found that good doctors don’t realize how unique and helpful they are, but they deserve to know. Also, I figure that by giving them positive reinforcement I’ll help them know to stay awesome and not give in to the sizeist nonsense that surrounds them in the medical field. The next time you see your doctor I hope you’ll give him some well deserved praise.
Though again, it’s sad that we should have to praise someone for doing what we should all have the right to expect. But there it is.
The Bus Driver
/ August 12, 2012@ kprofou – My doc said not to expect big weight loss, and honestly I don’t expect weight loss, I just want to feel good without putting on MORE weight. It will be interesting to see if my periods become more regular now that I am on a thyroid medication.
@ O.C. – I completely agree at giving these doctors the recognition they deserve for actually listening and being willing to think outside the “box”. I thanked him profusely for being willing to give it a try. I’m also looking forward to what my new test results will show. Maybe I’ll finally find the optimum level for me.
The Bus Driver
/ August 13, 2012As a side note, I kept being told that the thyroid is not the problem, and had been continually told that people who actually HAVE thyroid problems are a small percentage and that again, surgery was my only option to lose weight. I have been told by nearly every doctor I have seen that surgery is my only option. All I wanted was a doctor who would exhaust all other possibilities before even considering surgery.
On another side note, I will be seeking out a Bariatric surgeon/weight loss doctor to see if maybe THEIR team of people can help me get on a healthy track, and to see if they may have additional testing that they recommend for larger/obese people prior to considering surgery. I’m hoping I find the proper combination of doctors/meds that I can be helped to reduce my weight to a more healthy level.
kprofou
/ August 13, 2012Moni – my personal experience is that weight loss doctors are very focused on the goal of weight loss, not really the patient, if that makes sense. You should follow the path that feels right to you, but trust your spidey sense, if you feel like a treatment plan isn’t right for you, get away from the doctor. I wish you the best luck.
LAT
/ August 13, 2012I had a similar issue. My thyroid levels were on the upper end but still in the “range”. Even the “detailed” tests showed nothing wrong. Finally I started crying in the doc’s office, asking her what was wrong if my thyroid was fine but I had all the symptoms. She tested me for Cushing’s and then finally started me on Synthroid. I’m feeling a LOT better now, at a TSH under 2.
nsv
/ August 13, 2012I wonder if anyone has started on Armour and switched to Synthroid, with any success? I realize that’s not the normal progression, but it would be mine, so I’m curious. Armour did nothing for me, even at a fairly hefty dose (90mg).
skeptifem
/ August 16, 2012Weight gain+hair growth is sometimes related to cortisol problems instead of PCOS. I don’t know if they tested you for cushings or anything? Endo problems are really hard to pin down, its horrible.
Anyway, I would be extremely wary of bariatric surgeons. If you don’t have a comorbidity related to your obesity (like hypertension or diabetes) then they really aren’t supposed to consider you as a surgery candidate at all. Virtually every website about weight loss surgery says so, but go on obesity help (or just ask around) and see how many people you can find who got surgery without any additional risk factors. Tons of surgeons are willing to do this surgery because it pays well and there is little ethical oversight. There are other unethical practices from bariatric surgeons, too. I have yet to see a post op diet plan that any human can actually stick to. If any problem arises they will blame you for not sticking to the diet, even if it is as ridiculous as some of the ones I’ve heard (for example: 60% protein, 40% non starchy vegetables for life, so if you ever eat a slice of bread or a potato or an orange they can say your problem is diet adherance instead of the surgery). There is a lack of long term controlled study on the health outcomes of weight loss surgery, despite the surgeries having been around for decades. This makes them essentially an experimental procedure. If you go to a WLS seminar or a bariatric surgeon’s website they give a totally different impression though, and will try to scare you into thinking that being fat always results in death without intervention, and that surgery is the only thing that works (and by “works” they mean make you thinner, not healthier). What they leave out of their statistics is the quality of life people have after their surgery- if you vomit all the time of course you will lose weight, and get counted as a “success” statistic despite the terrible quality of life.
If you want information about WLS please check out junk food science. Please please please get info from people other than the surgeons selling the surgery. It sounds like you are healthy outside of your endocrine issues and it would really suck to end up worse off bc of a surgery that wasn’t needed.
The Bus Driver
/ August 16, 2012They did test me for Cushings, twice. I am wary of WLS as well, however, the process to get WLS is very involved and involves getting to know dieticians, and psychologists, as well as the bariatric surgeon. I have spoken to people who have seen success with WLS as well as those who have seen failure too. I’m aware of a lot of the risks involved with WLS, and before I actually go under the knife, I will have considered all other options, worked closely with the dietician in changing my diet to something that is acceptable, and will also have seen the psychologist several times. I know it is not a “miracle” procedure. In fact, I am concerned as to how it can help someone like me with PCOS and now a possible Thyroid disorder, as a majority of the surgeries out there are based purely on restriction. If restriction was key, then wouldn’t eating the diet prescribed post surgery help a person lose weight without surgery? Wouldn’t I lose weight just by calorie restriction? These are questions I want to get answered, but at this point noone seems to have a good answer, and despite me limiting calories on my own, I have not seen any successful weight loss. It gets discouraging when you know you WANT to lose weight, but things are preventing you from doing so.
kprofou
/ August 16, 2012Cushings patients can test negative multiple times before testing positive, it’s a very tricky disease, as it seems like most endocrine issues are.
At one point, I considered WLS, but after failing to lose any weight after doing a full blown liquid diet, I was convinced that what I was eating was not what was making me fat, but rather there was something else going on. (I also ended up with a life altering auto immune disease after doing the liquid diet, but that’s neither here nor there.) So I’m not sure the surgery would really help me lose weight in the long run. It’s a shame there’s not more research put into figuring out what’s actually making people fat instead of just fat shaming people.
Do you mind sharing what your thyroid numbers are? Please don’t feel pressured to. I don’t think mine were even above the normal range before my doctor prescribed me thryoid replacement. I’d been seeing the same doctor for some time and I told him that I knew something was wrong with my thyroid and I was going to see every single doctor in town if I had to in order to get thyroid replacement, but he could really save me some time if he just did it. Even if you don’t want to share your numbers with the internet, I highly recommend getting a copy of the actual numbers yourself and don’t just rely on your doctor to tell you something is “normal”, I did that for far, far, far too long. You are a better witness to your experience than anyone else.
sjreidhead
/ August 16, 2012Been there, done that. Had to beg for medication. Had a good GP who actually listened and read the list of things I’d checked off as symptoms of thyroid.
I’m allergic to the blasted medication!
I can’t win, or lose – for that matter.
The Well-Rounded Mama
/ August 18, 2012I echo what Jaed said in her first comment. A lot of “normal” TSH results really aren’t so normal, and a lot of people with “borderline” results really benefit from treatment, esp those who are symptomatic. You really need to read up on thyroid issues and educate yourself about them. Get a copy of your full results yourself and read up on what these mean. Start by researching Mary Sholomon’s books and website on thyroid issues.
I experienced a similar course of unexplainable weight gain (despite normal or borderline thyroid tests) at about the same age you did. It took me years before I found a doctor willing to take my symptoms seriously. Getting treated turned around my life. Didn’t result in much weight loss but really helped my PCOS a great deal, and kept me from gaining further weight. I also benefited from having Armour (T3) treatment as well as Synthroid (T4), so don’t be afraid to explore that.
What I found was that I needed to find a doctor that was trained in more “alternative” methods before my concerns were taken seriously. He was still an MD, but he had training in other fields too. He was more willing to treat to symptoms instead of to test results, as long as we carefully monitored everything. Most endos have just been trained too traditionally and in extremely fat-phobic biases and can’t step outside that paradigm.
For those who need to find a doctor who is more flexible, try a D.O. (have all the same privileges as an MD but usually are more open to alternatives) or a naturopath (tend to be very alternative so you have to watch for quacks, but many are really excellent). Or you can check the MDs on Mary Sholomon’s list of thyroid-friendly doctors.
silver price
/ August 21, 2012I understand what you are saying. For about a year, I tried to get someone to listen to me. I gained about 60 pounds in about 4 months. Something wasnt right. I weight always flucutated between 5-6 pounds plus or minus. At the same time I was on predisone for asthma/allery related issues and hyalagan for my knees. So walking was kind of out of the question. My best friend kept saying it was my thyroid (hypo). Everytime, I did the blood work, everything came back normal and they kept stressing the losing of weight. I kept saying that nothing has change except I feel tired and for some unknown reason had a taste for sweets, which I never have. Anyway, I started walking on the bad knees. I had knee surgery on both and injections since the knee surgery on one knee. Watch what I ate and drank plenty of water. Nothing happen. I go for the annual rountine check up and walla… my labs are out of whack. The numbers just happen to read hyper in stead of hypo. Then endo just said, “you should be losing weight”. I have tried everything and to no avail.. Now they are listening just a little.. Don’t give up… I haven’t….Lord knows I have wanted to.
Fat Fox
/ September 29, 2012http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1069067/
I know I’m late to the party here, but just so you know, PCOS is not diagnosed by what is seen on an ultrasound. The name is a bit of a red haring. I have text-book ovaries and uterus. However, I have hypothyroidism, hyperandrogenism, hirutism, extra weight, the whole 9 yards. When I went to the endocrinologist about it and said “but I don’t have PCOS ovaries and I don’t have insulin resistance” she told me that even though those tests were negative, my body was clearly displaying obvious signs of PCOS.
Your history sounds uncannily similar to mine – straight down to the home cooked meals, the size in high school, and the frustration with doctors. If you would like to discuss the PCOS and the resources and things that I have gathered over the years, I would be happy to share. You can contact me at carolmerel at hotmail dot com.
SW
/ November 28, 2012I went to a really expensive (not covered by insurance) doctor after years of normal/borderline TSH tests. I’m an in-betweenie but have steadily gained weight and just felt run down all the time and was tired of being told it was stress, stress, stress. Turns out my Free T3 levels were low and Reverse T3 were high–meaning I had plenty of T4 but it wasn’t getting converted into anything my body could use to run my metabolism. I’m now on a slow-release T3-only formula and I feel like I just woke up from a 4-year hangover. I have more energy but also just feel more motivated, have a clearer head, and less depressed. I haven’t lost any weight but I don’t really care about that, I feel so much better. I hope you continue to push for better testing and the right treatment so you can feel this good.
casaldyco
/ May 22, 2013This could be ME. Seriously… except my ovaries are polycystic. Everything else though? YES! It’s driving me nuts.
I’m seeing my primary tomorrow. Again. This time armed with enough information to get my way.
Can you post a follow up. Did the meds work? Did anything work?
dacula985
/ May 23, 2013Moni, your story sounds just like my story. I have just finally been diagnosed with enlarged thyroid two days ago. I am now looking to see an Endocronologist.
How are you doing now? Besides feeling good, have you lost any weight?