Hypothyroid or hypochondriac?
January 17, 2016 4:32 AM Subscribe
Please help me figure out if I'm being a hypochondriac or if there is something physically wrong with me, and how to find out.
Last month, I posted a question about my painful and inconveniencing menstruation. I received a lot of help (thank you!) and am going through the suggestions. Last week, I saw an endocrinologist and described my problems, and today I received the results of my blood test, which he found "perfect." (The ultrasound also showed nothing expect some very small knots, which he deemed harmeless.) Of course I don't want to be sick, so I'm glad there's nothing, but that doesn't get me closer to figuring out the reason for my pain and to manage it. He suggested I see a gynecologist next, which I will do after collecting some recommendations - I have had awful experiences with gynecologists snapping at me to endure painful exams, and would like to find someone good before I run out of sick leave* and my health insurance's patience. All in all, I didn't feel like he took me completely seriously, but since he is a doctor told me to „trust my own body“, I'm not sure if there's much sense in going to another endocrinologist, especially since he told me that no reasonable doctor around here would prescribe me hormones for subclinical hypothyroid and even said that doing so would be doping. Combined with being told by my parents since little that I was too sensitive and my health problems were all caused by lack of sport, I have a hard time trusting myself here and not wondering if I'm not actually exaggerating, but as I said in my last question, some of my symptoms are pretty disruptive, and the ones that point to hypothyroid or something similar are also ones that I could live better without.
Before I put myself through the ordeal of seeing yet another doctor who might think I'm exaggerating, I thought I would ask here for suggestions. Does it make sense to see someone new and if so, how do I find that someone if treating symptoms (which I have a lot of) when lab results seem good is just not done here? Your own experiences would be great, too, if you had similar problems, and ways to advocate for myself. I think I'm pretty good to voice what I experience and what I want (I always prepare notes), but with this doctor and several before, I gave up because they seemed disinterested or almost rude, and he also claimed that there's a lot of bullshit literature about thyroid issues out there. I get that patients who think they know what they talk about are annoying for doctors, but I also feel more and more like I have to do my own research because doctors don't stay on top of theirs. Is it really true that taking thyroid hormones is a good idea even when your TSH etc. look good? Are the newly lowered ranges correct or are all my doctors here correct when they say that up to 4 or 5 is normal for TSH? (And why would he give me hormones if I wanted to get pregnant - does my body not deserve them unless I create a new human being?)
So summed up, how do I get a doctor to take me seriously when I'm not even sure I trust my issues here, when the medical research here seems to say different things than the one I have read up on (e.g. here on MeFi) and when there seems to be a general bias that doesn't take women's diseases very seriously?
* I actually have unlimited sick leave, but I may apply for an in-house promotion this year and don't want my employer to think I'm not fit to work.
Last month, I posted a question about my painful and inconveniencing menstruation. I received a lot of help (thank you!) and am going through the suggestions. Last week, I saw an endocrinologist and described my problems, and today I received the results of my blood test, which he found "perfect." (The ultrasound also showed nothing expect some very small knots, which he deemed harmeless.) Of course I don't want to be sick, so I'm glad there's nothing, but that doesn't get me closer to figuring out the reason for my pain and to manage it. He suggested I see a gynecologist next, which I will do after collecting some recommendations - I have had awful experiences with gynecologists snapping at me to endure painful exams, and would like to find someone good before I run out of sick leave* and my health insurance's patience. All in all, I didn't feel like he took me completely seriously, but since he is a doctor told me to „trust my own body“, I'm not sure if there's much sense in going to another endocrinologist, especially since he told me that no reasonable doctor around here would prescribe me hormones for subclinical hypothyroid and even said that doing so would be doping. Combined with being told by my parents since little that I was too sensitive and my health problems were all caused by lack of sport, I have a hard time trusting myself here and not wondering if I'm not actually exaggerating, but as I said in my last question, some of my symptoms are pretty disruptive, and the ones that point to hypothyroid or something similar are also ones that I could live better without.
Before I put myself through the ordeal of seeing yet another doctor who might think I'm exaggerating, I thought I would ask here for suggestions. Does it make sense to see someone new and if so, how do I find that someone if treating symptoms (which I have a lot of) when lab results seem good is just not done here? Your own experiences would be great, too, if you had similar problems, and ways to advocate for myself. I think I'm pretty good to voice what I experience and what I want (I always prepare notes), but with this doctor and several before, I gave up because they seemed disinterested or almost rude, and he also claimed that there's a lot of bullshit literature about thyroid issues out there. I get that patients who think they know what they talk about are annoying for doctors, but I also feel more and more like I have to do my own research because doctors don't stay on top of theirs. Is it really true that taking thyroid hormones is a good idea even when your TSH etc. look good? Are the newly lowered ranges correct or are all my doctors here correct when they say that up to 4 or 5 is normal for TSH? (And why would he give me hormones if I wanted to get pregnant - does my body not deserve them unless I create a new human being?)
So summed up, how do I get a doctor to take me seriously when I'm not even sure I trust my issues here, when the medical research here seems to say different things than the one I have read up on (e.g. here on MeFi) and when there seems to be a general bias that doesn't take women's diseases very seriously?
* I actually have unlimited sick leave, but I may apply for an in-house promotion this year and don't want my employer to think I'm not fit to work.
Best answer: I'm actually on thyroid meds for subclinical hypothyroid, so I've had this conversation with a (sympathetic) doctor recently. The risk, according to her, is that your system might rebound and drive your thyroid levels *lower* if you try to raise them, if your thyroid gland is functioning. (Mine is dubious, but I have some fairly serious autoimmune issues that can interact badly with the thyroid gland.)
That said, thyroid meds have done exactly zero to alter my menstruation, and I intermittently have symptoms like you describe in your other question. A gynecologist is really the way to go, here.
posted by restless_nomad at 7:23 AM on January 17, 2016 [2 favorites]
That said, thyroid meds have done exactly zero to alter my menstruation, and I intermittently have symptoms like you describe in your other question. A gynecologist is really the way to go, here.
posted by restless_nomad at 7:23 AM on January 17, 2016 [2 favorites]
Best answer: In the last thread it looked like several people suggested that you see a gynecologist to rule out endometriosis or PCOS. Those are the first things I thought of too when you wrote about your symptoms. (I don't have either but have friends who have.) Have you done that?
If not, YES it is absolutely worth seeing an OB/Gyn. Tell him/her your symptoms and don't be apologetic and *expect* to be believed. It can be very hard to advocate for yourself with medical professionals (especially as a woman). But it's important. What's happening to you is real.
And try not to let your past of being dismissed or shut down by parents or other doctors cloud your thinking. The fact that your parents thought you were oversensitive or whatever has exactly zero relevance here. Stick to what's going on right now (which sounds awful) and get yourself to someone who can help you.
Hang in there - you deserve to feel better.
posted by pantarei70 at 7:28 AM on January 17, 2016 [3 favorites]
If not, YES it is absolutely worth seeing an OB/Gyn. Tell him/her your symptoms and don't be apologetic and *expect* to be believed. It can be very hard to advocate for yourself with medical professionals (especially as a woman). But it's important. What's happening to you is real.
And try not to let your past of being dismissed or shut down by parents or other doctors cloud your thinking. The fact that your parents thought you were oversensitive or whatever has exactly zero relevance here. Stick to what's going on right now (which sounds awful) and get yourself to someone who can help you.
Hang in there - you deserve to feel better.
posted by pantarei70 at 7:28 AM on January 17, 2016 [3 favorites]
Best answer: I've had subclinical hypothroid results for 20 years, and my TSH usually ranges from 4-9. I've been on a similarly wide range of dosages of levothyroxine, and it never did anything for what I'd always considered to be hypothyroid symptoms (including insanely painful menstrual cramps). My point in telling you this, is that I recommend you not get hung up on this specific number and disease. Definitely keep pursuing a diagnosis! But synthroid is not necessarily a holy grail, especially if your T3/T4 are super-always-normal. Also, I've found that the more open I've become to other possibilities, the more open and helpful the various doctors have been (though I'm still a strong proponent of getting second/third opinions when you hate/doubt someone).
posted by unknowncommand at 7:48 AM on January 17, 2016 [3 favorites]
posted by unknowncommand at 7:48 AM on January 17, 2016 [3 favorites]
I have hypothyroidism and this year have had a return of symptoms that I had previously attributed to my hypothyroidism, but my levels are fine. One thing I have learned is that there are many many hormones at play that can effect things. My gynecologist and endocrinologist are working together on this problem & both seem to think the opinions of the other are essential, so I definitely back-up your doc's recommendation to see your gynecologist.
posted by CMcG at 8:24 AM on January 17, 2016
posted by CMcG at 8:24 AM on January 17, 2016
Best answer: Just another data point: my TSH was around 4-something, and I had a range of standard hypo symptoms and felt like utter crap; I also noticed that my TSH had been rising dramatically over the past 3 years. When I talked to my doctor they told me my TSH was within normal range, and I had to press hard and present an argument (my symptoms, timeline, etc.) in order to get her to give me a tiny amount of thyroid medicine (Levothyroxine) as an experiment (which was steadily increased with lab visits over a period of a year or two).
If I hadn't researched what the symptoms were, and been assertive in the doctor's office, I would not have received treatment until a later date. It's sort of a thing amongst the thyroid community online that the 'standard' range needs to be made much narrower. Not recommending you do this or not, just giving you my experience.
IANYD disclaimer, of course.
posted by joseph conrad is fully awesome at 10:34 AM on January 17, 2016
If I hadn't researched what the symptoms were, and been assertive in the doctor's office, I would not have received treatment until a later date. It's sort of a thing amongst the thyroid community online that the 'standard' range needs to be made much narrower. Not recommending you do this or not, just giving you my experience.
IANYD disclaimer, of course.
posted by joseph conrad is fully awesome at 10:34 AM on January 17, 2016
I had nightmarishly painful periods for years but stupidly assumed they were normal. It wasn't until I started investigating fertility issues that my doc and I discovered I had endometriosis. Unfortunately, the degree of symptoms don't correlate to the level of endometriosis necessarily. One can have a "mild" level of endometriosis and yet severe symptoms. Or few symptoms and major endometriosis. Please check out this possibility, and good luck!
posted by Bella Donna at 10:35 AM on January 17, 2016
posted by Bella Donna at 10:35 AM on January 17, 2016
It's always good to rule out organic causes, so having your labs in hand is a great first step. For what it's worth, I had a TSH of 4.9 (or something very close to the cutoff) and had multiple symptoms of hypothyroidism, but my doc likewise declined to prescribe levothyroxine until a few months later when he re-checked my labs, and found my TSH clearly elevated. So it might be worth monitoring over a few months. Once I did get on thyroid supplementation, my endocrinologist said that ideally, my TSH should be around 1 (and this seems pretty common for patients on T4 supplementation), which is probably why you see these mixed answers about what a "normal" TSH is. T4 replacement is more carefully considered if a patient is trying to conceive is that maternal hypothyroidism could result in miscarriage or mental retardation in the child.
To address the "hypochondriac" aspect of your question: something I've been mulling over myself... It sucks that "it's all in the patient's head" is so fraught with stigma, for illnesses are always psychological/"in one's head," in the sense that it's always the patient who, after perceiving that something is not quite right, hauls themselves over to the doctor's office, and not the illness itself. In the past year, I've been to a ton of doctors' appointments for somewhat nonspecific and frustrating symptoms, and I felt like I was "making it all up." With that, I felt a certain degree of shame and reluctance to deal with healthcare providers.
... One year later, though, I am starting to more comfortably own the idea that many of my symptoms WOULD probably be improved if I felt more at peace with other aspects of my life. And I don't think this is exclusive to me, or even women in general (though yes, women's pain is frequently dismissed)-- I think this is true for most people. For example, when I worked in the family medicine clinic in town, I'd frequently see patients who would come in for things like a sprained ankle. Innocuous enough, right? Give them an ACE bandage and some ice, and they should be good to go. But then I'd ask them to rate their pain on a 0-10 scale, and they'd reply, "11!" -- what do we make of that? Yes, their ankle might have truly sustained an injury-- and I use this example here because a sprained ankle is a somewhat more "tangible" ailment that one can point a finger at-- but rating pain is ultimately a psychological exercise. When patients reply that their sprained ankle is an 11/10, that is not a sign for me to order up every imaging test in the catalogue, but rather a hint that there is more going on in their lives than just a sprained ankle. There is no shame in that.
If you were raised in a household where your emotional needs weren't taken seriously, then it makes perfect sense that you/your body would instead try to express its needs through physical symptoms which might be "taken more seriously." It is really tough to practice the skill of recognizing, acknowledging, and feeling comfortable with having needs if you weren't taught how to do this early in life. In a similar but related vein, and in less "woo" terms, there's a growing amount of evidence which suggests that adverse life events in childhood (which include emotional neglect) are associated with health problems later in life, including HPA axis dysfunction, which could certainly manifest in menstrual irregularities and other nonspecific symptoms.
I don't know if this rambling is helpful at all to you, but I wish you good luck and hope you are able to find a doctor who takes your emotional and physical needs seriously.
posted by gemutlichkeit at 10:54 AM on January 17, 2016 [2 favorites]
To address the "hypochondriac" aspect of your question: something I've been mulling over myself... It sucks that "it's all in the patient's head" is so fraught with stigma, for illnesses are always psychological/"in one's head," in the sense that it's always the patient who, after perceiving that something is not quite right, hauls themselves over to the doctor's office, and not the illness itself. In the past year, I've been to a ton of doctors' appointments for somewhat nonspecific and frustrating symptoms, and I felt like I was "making it all up." With that, I felt a certain degree of shame and reluctance to deal with healthcare providers.
... One year later, though, I am starting to more comfortably own the idea that many of my symptoms WOULD probably be improved if I felt more at peace with other aspects of my life. And I don't think this is exclusive to me, or even women in general (though yes, women's pain is frequently dismissed)-- I think this is true for most people. For example, when I worked in the family medicine clinic in town, I'd frequently see patients who would come in for things like a sprained ankle. Innocuous enough, right? Give them an ACE bandage and some ice, and they should be good to go. But then I'd ask them to rate their pain on a 0-10 scale, and they'd reply, "11!" -- what do we make of that? Yes, their ankle might have truly sustained an injury-- and I use this example here because a sprained ankle is a somewhat more "tangible" ailment that one can point a finger at-- but rating pain is ultimately a psychological exercise. When patients reply that their sprained ankle is an 11/10, that is not a sign for me to order up every imaging test in the catalogue, but rather a hint that there is more going on in their lives than just a sprained ankle. There is no shame in that.
If you were raised in a household where your emotional needs weren't taken seriously, then it makes perfect sense that you/your body would instead try to express its needs through physical symptoms which might be "taken more seriously." It is really tough to practice the skill of recognizing, acknowledging, and feeling comfortable with having needs if you weren't taught how to do this early in life. In a similar but related vein, and in less "woo" terms, there's a growing amount of evidence which suggests that adverse life events in childhood (which include emotional neglect) are associated with health problems later in life, including HPA axis dysfunction, which could certainly manifest in menstrual irregularities and other nonspecific symptoms.
I don't know if this rambling is helpful at all to you, but I wish you good luck and hope you are able to find a doctor who takes your emotional and physical needs seriously.
posted by gemutlichkeit at 10:54 AM on January 17, 2016 [2 favorites]
Best answer: My thyroid levels were always "normal" in my 30s even as I got progressively fatter, sleepier, and colder. Finally my doc went on sabbatical, and the next doctor I saw just LOOKED at me and said, "Let's try you on a very low dose of synthroid." Later that week I woke up, for the first time in years, feeling actually RESTED. I cried ... had not realized how bad it was until it was better.
Since then a few doctors have said "Oh your levels are in the normal range, let's take you off Synthroid."
I buy my own at alldaychemist.com and to hell with the doctors.
IANAD, IANYD. Good luck.
posted by 2soxy4mypuppet at 12:02 PM on January 17, 2016 [1 favorite]
Since then a few doctors have said "Oh your levels are in the normal range, let's take you off Synthroid."
I buy my own at alldaychemist.com and to hell with the doctors.
IANAD, IANYD. Good luck.
posted by 2soxy4mypuppet at 12:02 PM on January 17, 2016 [1 favorite]
Best answer: I'm gonna go with a little different ways here and suggest you maybe look up a doc who specializes in functional medicine..they're basically regular drs but with more education in diets and things. They deal with you in a more holistic way. Went to a lecture on hyperthyroidism (which I have) and gut health last year, and boooy was it eye opening.
All the best!! I hope you find your answers and fully trust your feels! you're supposed to feel healthy and strong, not meh!!!
posted by speakeasy at 1:46 PM on January 17, 2016
All the best!! I hope you find your answers and fully trust your feels! you're supposed to feel healthy and strong, not meh!!!
posted by speakeasy at 1:46 PM on January 17, 2016
Best answer: Every single woman in my family started having thyroid issues in their 30's. So when my TSH levels were high (similar to yours, actually) my doctor finally agreed that if they stayed that high for two months in a row, she would put me on thyroid meds. My next test was even higher.
After almost a year on meds, I am still tired, gaining weight, and cold all the time, but now it's interspersed by hyperthyroid symptoms like anxiety, waking up frequently, and being hungry all the time. Now, they think my adrenal glands are the actual problem.
Obviously YMMV, but I would recommend you find another doctor. It's worth it to keep trying - lots of doctors are willing to give meds for numbers like yours. Thyroid meds may not make a huge difference with the issues you mention, but it's worth a try.
posted by guster4lovers at 5:34 PM on January 17, 2016
After almost a year on meds, I am still tired, gaining weight, and cold all the time, but now it's interspersed by hyperthyroid symptoms like anxiety, waking up frequently, and being hungry all the time. Now, they think my adrenal glands are the actual problem.
Obviously YMMV, but I would recommend you find another doctor. It's worth it to keep trying - lots of doctors are willing to give meds for numbers like yours. Thyroid meds may not make a huge difference with the issues you mention, but it's worth a try.
posted by guster4lovers at 5:34 PM on January 17, 2016
There has been a disturbing trend over recent years of people getting diagnosed with subclinical hypothyroidism and getting on thyroid replacement. Most endocrinologists DO feel that this is quackery and not good practice, but of course what you hear on the internet is not mainly coming from endocrinologists (want to learn a lot more, here's a Science Based Medicine article). There are doctors out there who will try to get patients on proprietary formulations of thyroid replacement and make money off of it. Because the symptoms of hypothyroidism are nonspecific - they can be caused by many different problems, a lot of people suspect they have it. Also, thyroid replacement can have effects that people like: sort of like if you take Ritalin to help you study for an exam, being a little bit hyperthyroid feels good! Thyroid replacement medication can be abused as a weight loss drug and even as performance enhancing or, yes, 'doping' for athletes and bodybuilders.
Unfortunately taking thyroid hormone replacement you don't need can lead to many complications including heart arrhythmias/heart failure, stroke, and osteoporosis.
Please keep an open mind as urged above and try not to get too caught up in diagnosing yourself. There really is a reason why the guidelines are what they are. If you've seen many doctors and had a full battery of tests and nothing's been found, I understand feeling the need to take it into your own hands, but if you settle on your own conclusion too early you might end up influencing your workup and treatment such that your true diagnosis could be delayed or missed, or you could be treated in a way that would subject you to unnecessary health risks because someone's trying to improve their Press Ganey scores (or make a profit on their bioidentical thyroid hormone business!).
posted by treehorn+bunny at 1:33 AM on January 18, 2016
Unfortunately taking thyroid hormone replacement you don't need can lead to many complications including heart arrhythmias/heart failure, stroke, and osteoporosis.
Please keep an open mind as urged above and try not to get too caught up in diagnosing yourself. There really is a reason why the guidelines are what they are. If you've seen many doctors and had a full battery of tests and nothing's been found, I understand feeling the need to take it into your own hands, but if you settle on your own conclusion too early you might end up influencing your workup and treatment such that your true diagnosis could be delayed or missed, or you could be treated in a way that would subject you to unnecessary health risks because someone's trying to improve their Press Ganey scores (or make a profit on their bioidentical thyroid hormone business!).
posted by treehorn+bunny at 1:33 AM on January 18, 2016
Response by poster: Thank you for your answers, everyone! The reason why I went to an endocrinologist first was because my last ob/gyn visit didn't reveal anything, and because a good friend of mine was diagnosed with thyroid cancer, which, combined with my symptoms, scared me into scheduling a visit. I had hoped to get a full blood panel, but the guy didn't test for a lot of things because he didn't think I "fit the profile": I'll try to find a new gyno through recommendations and research and hope it will finally be someone who takes me and my problems seriously.
posted by LoonyLovegood at 10:59 AM on January 18, 2016
posted by LoonyLovegood at 10:59 AM on January 18, 2016
I would not approach this as either hypothyroid or hypochondriac, but rather as "something is wrong, but we haven't figured it out yet." It sounds like you have very real symptoms that need to be taken seriously, but trying to self-diagnose on the internet with a very specific diagnosis doesn't seem like the best plan. It's not as if this is a case of "either this is a thyroid problem OR I am completely imagining it!" I would keep an open mind to what the problem could be. You may be able to get a full blood panel from your primary care doctor (I get one every few years, as the standard thing to just make sure everything is in good shape), and I agree that seeing an ob/gyn is a good plan as well. One thing to ask about would be trying birth control of some sort or another -- it has completely solved my issues with severe/terrible periods, so could be something to experiment with since it sounds like you are not seeking to become pregnant.
posted by rainbowbrite at 4:12 PM on January 18, 2016
posted by rainbowbrite at 4:12 PM on January 18, 2016
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posted by LoonyLovegood at 7:09 AM on January 17, 2016