I got what I wanted but the doctor is a quack and I don't trust him. Help?
October 14, 2012 12:32 AM   Subscribe

The doctor I just saw is a quack. I knew he would be, but I set up an appointment anyway. I've been dealing with fatigue and chronic pain, and regular doctors haven't had an answer. So I set up an appointment with a doctor that practices "functional medicine" as a last ditch effort. How do I reconcile what this doctor told me with what I know about real medicine and the load of bullshit I was just fed?

I don't want to go into the long history of my medical issues or I could end up writing a book, and this ask is going to be long anyway. But the short of it is, I've been experiencing fatigue for the past couple years with no definitive cause. Had a round of fatigue a few years before because of low serum ferritin and restless leg syndrome. Got better, but after a while started getting tired again. No problems with serum ferritin but RLS is back. Later started having reoccurring chronic pain no one one could diagnosis, fatigue and pain continue to worsen. Some odd test results, but nothing significant enough to lead to a diagnosis. I have seen 80 billion doctors. (okay, maybe not that many) and the provisional diagnosis is atypical fibromyalgia with chronic fatigue syndrome. This diagnosis, I'm told is only a diagnosis of exclusion.

I'm now being treated at a pain clinic and by a rheumatologist. And my GP and sleep doctor are still involved for good measure. Not to fond of the rheumatologist, but that's another story.

I had my first appointment a few weeks ago with the MD that will be treating my pain. We talked about a lot of things. I liked her a lot, in part because she told me that there wasn't a lot more they can do for me (mainly, because she was honest, and didn't beat around the bush.)

I asked her something that had been bugging me for a long time. "Is it possible it's my thyroid?" I've been asked by so many doctors if my thyroid has been tested because my symptoms always sound thyroid-y. Friends and family with thyroid issues have said "you sound just like me before I was treated". But my thyroid has been tested multiple times and it has come back normal. But there is scores of information on the internet that say that normal results might not actually rule out thyroid issues. But the internet doesn't have it's medical license, and I try to take it with a grain of salt. We chat about this for a bit, she says my symptoms do sound a lot like hypothyroid symptoms, but the value looks normal. But, she goes on to tell me, that she's heard of people with subclinical hypothyroid that get relief when put on a low dose of thyroid medication.

In fact, she tells me, she had a patient a few years ago who had pain very similar to what I'm describing, who eventually went to a functional medicine doctor, was put on a low dose of thyroid, and it cleared up her pain, her fatigue symptoms, and made her a whole new person. So much so that the doctor says it may be something I want to try, because I've tried everything else. She said she doesn't feel comfortable prescribing thyroid meds herself because it's not in her wheelhouse, but seeing an alternative medicine might be something I can give a go since I've tried everything else.

Now, I have considered, after researching thyroid issues, seeing an alternative medicine/woo type doctor, and I haven't been able to get over the fact that I think most/all of it is nonsense. But, after this discussion with this doctor, I decided to do just that. So I find a doctor in the area that is associated with a real hospital, and seems to have the least amount of woo. If I'm just going to get a prescription of thyroid medicine, maybe I can stomach the nonsense.

I had that appointment yesterday, and the whole thing has rubbed me the wrong way. The first thing I noticed when I walked into the place is that they were offering an ionic foot bath to "detoxify". I've never heard of this before but immediately I knew it was snake oil. They showed pictures of people in the foot bath with clear water to progressively darker water. (Having an internet enable phone is a wonderful tool for skeptics like me). The alarm klaxons warning me this is not real medicine are going off in my head.

I finally meet with the doctor. He starts to explain what feels like a speech he's said a million times. I'm not sick, my hormones are out of balance. He prescribes the thyroid medication. But he also tells me my progesterone is low, and I need a prescription for that. And that I need weekly b12 shots. I need to eat better (well, I can't disagree with him there) and I need to cut out gluten. I need to only eat organic food. And I have Adrenal Fatigue and need to take supplements for it. I have Epstein barr antibodies and the eb is what is causing my chronic fatigue (GRRRRR) Further down the rabbit hole I go, trying hard not to just say this is exactly why I didn't want to talk to a doctor like you.

Meanwhile, he's not really listening to me, and keeps talking over my questions and comments. I ended up buying two of the three supplements he told me because I'm a sucker and I honestly wanted to get out of there. He gave me DHEA and Rhodiola rosea. I commit in my head to doing what he says because it's not going to interfere with anything the other doctors are having me do. And why not? Maybe I will feel better.

The problem is, the further I get from the situation, the worse I feel about it. I got what I came for, the thyroid medication, but I feel a bit like I need a doctor I can trust before I go down this path, and this guy wasn't it. But I haven't been able to find a good doctor in the area that is willing to be a little more creative when it comes to considering thyroid. Whenever I look for doctors in the area that specialize in it, it's always the out there alternative medicine types. Outside the area, there are doctors associated with schools and doing cutting edge research, being published, but right now I do not have the money to travel to areas where these doctors are located.

I've already seen an endocrinologist, but I didn't like him much*, and my understanding is that it's the rare endocrinologist that takes subclinical hypothyroidism seriously. (*He rules out two possible illnesses and then became obsessed with my blood pressure and continually ignored me when I'd try to bring the subject back to the pain and fatigue. And he thought my high blood pressure was cured when I was off of blood pressure meds for a week and it didn't go up right away, thus claiming my birth control pills were causing it all along and I was cured. Of course it came up within a couple weeks as one would expect. He was upset with me because I had bad reactions to certain medications, including one that sent me to urgent care. And he'd get mad when I'd probe about thyroid but wouldn't explain why other than "you can't trust the internet." Which, while he probably was not wrong, I would expect a little more patience and willingness to answer my questions than to just dismiss them.)

I don't know it's my thyroid that is the problem, but I feel like it's something that hasn't been tried and it's the one thing that so many doctors keep asking about so obviously they think it's something at least initially. I'd like to have a serious conversation with a real doctor that will take me seriously.

So I don't know. Do I just go along with what this doctor is saying, or do I bail? And if I do bail, do I keep trying to find another doctor, and see if there is something to the possibility of a thryoid issue? And where?

(And since it will probably be asked, my most recent thyroid tests are TSH 2.57, FT3 2.8, FT4 0.87, Total T3 119.4. TSH bounces around 2.2-3.2, but no one has been able to tell me if that is a "normal" variation. Thyroid antibodies negative)
posted by [insert clever name here] to Health & Fitness (31 answers total) 4 users marked this as a favorite
What is your question? If you don't trust your doctor, an AskMetafilter answer, even a consensus of answers, is not going to change that.
posted by halogen at 12:53 AM on October 14, 2012 [8 favorites]

OK. Person with thyroid disorder here; also having an extremely difficult time parsing your question.

Can you share your location so that we can recommend doctors who might be empathetic to your situation?
posted by lalex at 1:05 AM on October 14, 2012

The unfortunate truth is the sort of medical doctor that gets into alternative treatments is also all too frequently the sort of medical doctor that sells supplements in-house and up-sells patients on all kinds of goods and services and pointless blood tests.

Now, a cynical person might conclude that if alternative treatments had a shred of medical proof then they would be regular treatments, but that's a topic for a different day.

You got the script for thyroid pills. Take it. See if it makes you feel any better. If not, move on.

Most private practitioners have become de facto businessmen. The simplest way to do business is if they can't figure out what's going on with the patient while they're in the room, then it's not going to happen. You are concerned about your health and would like to do everything in your power to fix it; he's seen several hundred people in the last month and billing is based on diagnosis and treatments, not relief or cures.

Meanwhile Dr. Woo is doing a killer business because all of the other guys in the area simply don't want to deal with patients that make them feel impotent / have psychological problems / are never satisfied.

A lot of idealistic medical students out there would kill to train to be Dr. House but the sad reality is that job does not exist and the medical profession is not in the business of fixing rare or undiagnosable conditions.

Like the endocrinologist - there's thousands and thousands of pages written on diagnosing and treating high blood pressure, so naturally he would prefer to tread on solid ground. But you could care less about your high blood pressure, and naturally a lot of those treatments are going to make you feel worse.

Healthcare is such a depressing mess.
posted by hobo gitano de queretaro at 1:08 AM on October 14, 2012 [9 favorites]

Right, and then god forbid some kind of side effect happened to you when you were testing possible off-label treatments. I forgot all about that. That's another reason why a lot of doctors would rather stay away from this sort of thing and stick to verifiable medical conditions.
posted by hobo gitano de queretaro at 1:11 AM on October 14, 2012

What's the thyroid medicine you were prescribed? Is it Eutirox/Levoxyl/Synthroid/Tirosint/Levothyroxine, that is, synthetic thyroid hormone? Or is it a "herbal supplement" or similar purported to improve thyroid function? The former is known to work for hypothyroidism, the latter - not sure.
posted by Zarkonnen at 1:17 AM on October 14, 2012

You're all right, this was a crap question. Written very emotionally and thus, unintelligibly. The question I guess is do I follow any of this doctors advice even though I know a lot of it is probably not evidence based?

Thyroid is a weird thing; and to be honest I'm not sure where I sit on it; there does seem to be a lot of compelling evidence that hypothyroidism has a much broader definition with narrower ranges than is commonly accepted, and there are legitimate doctors working with it, studying it and treating it, but they are few and far between. I could be fooling myself in believing it's possible, but I also know that medicine guidelines change. Even between the US and the UK there are vastly different guidelines.

The thyroid medicine is a real prescription - armour thyroid, not synthetic, but not a supplement either. It's desiccated porcine thyroid. As I understand it, preferred by many because it contains both t4 and t3.

The supplement I turned down was a herbal supplement to help my adrenals "recover".

If it helps, I'm in the midwest. Milwaukee, Wi to be specific.
posted by [insert clever name here] at 1:28 AM on October 14, 2012 [1 favorite]

Ultimately, you sought out this prescription on the strength of the Pain Doctor's experience with a previous patient who responded to a similar treatment, correct? Even if she wasn't willing to write that prescription herself.

So it really comes down to how much weight you want to give to that one datapoint, in light of the unique details of your own personal case.
posted by radwolf76 at 1:37 AM on October 14, 2012 [2 favorites]

Hi OP, another skeptic with a thyroid condition here. In your situation, since you've got a real prescription from the quack, my approach would be to take the Armour for a few weeks and ignore all of his other advice. If it does make you feel better, is there any chance you can go back to your pain MD and tell her so? Probably she still won't feel comfortable prescribing it, but she's likely to be able to recommend another endocrinologist who can, and she sounds like the best doctor you've found to talk about this stuff with so far. If the Armour doesn't end up helping, a low dose of thyroxine for a few weeks is not going to do you any lasting harm.

Good luck with all this. It sounds like a very draining situation and I hope you find some solutions soon.
posted by daisyk at 1:39 AM on October 14, 2012 [5 favorites]

When is your next appointment with the pain doctor? It sounds she's on the same page as you regarding the benefits/limits of alternative medicine and might be able to give you some advice on how to navigate this.

Having looked up Rhodiola rosea and DHEA, I personally would consider taking the first but not the second. There isn't strong evidence for the efficacy of Rhodiola rosea, but it doesn't appear to be dangerous, whereas the safety of DHEA seems much more in question. B12 shots also probably won't harm you, if for whatever reason you are feeling particularly co-operative.

I agree with daisyk that your ultimate goal should be to find out if the thyroid meds work and, if they do, get transferred to a real endocrinologist who can continue to prescribe them but also monitor you in a responsible way. I wouldn't want to be taking thyroid meds long-term under the supervision of someone who thinks feet release brown toxins into water. However, you may have more luck getting a real endocrinologist to continue an existing treatment strategy than to begin prescribing. Good luck!
posted by Acheman at 1:47 AM on October 14, 2012 [2 favorites]

Your pain doc sent you to a guy who offers ionic foot baths? Fascinating.

I dunno. Take the Armour. People have been taking it since the late 1800s. If it's awesome, yay, if not, well, you tried it. However, your regular endocrinologist may be resistant to prescribing Armour and may insist on synthetic hormone. I guess there are conspiracy theories and controversies surrounding the use of this medication. I've never taken it, myself.
posted by xyzzy at 1:53 AM on October 14, 2012

I would strongly consider working with your pain doc or endocrinologist or another trustworthy physician to monitor your thyroid levels and dose of the Armour if you choose to take the drug (or synthetic hormone instead). Thyroid hormones are normally carefully dosed by an endocrinologist with reference to regular blood tests, especially at first to see how your body reacts. I would not go back to the quack doctor with the ionic baths, but I also wouldn't be inclined to pop unspecified doses of thyroid hormone without the supervision of a competent physician following the basic standard of care.
posted by zachlipton at 2:04 AM on October 14, 2012

Your pain doc sent you to a guy who offers ionic foot baths? Fascinating.

Ha. No, she did not recommend this doctor. We had a long conversation about alternative medicine because she deals with a lot of patients seeing chiropractors and how they range from pretty medically saavy to way out there. I explained I had considered seeking an alternative medicine pratitioner, but was turned off by the pseudoscience. Her suggestion was at this point, it wouldn't hurt, and if I did, to seek someone who specializes in functional medicine, because she thought it would be the least "out there" and she sees a lot of patients, who at their wits end, try all sorts of things. She didn't have a specific doctor recommendation because she couldn't remember who her patient saw. So after sitting on it a few days, I found and contacted this doctor, because he's associated with a real hospital and he had the least crazy on his website (no magic foot bathes).
posted by [insert clever name here] at 2:16 AM on October 14, 2012

Setting aside the potential effectiveness of all the stuff the quack pushed at you, the problem with starting a bunch of treatments simultaneously is that you won't know which treatment is doing what. So like daisyk, I'd just try the plausibly genuine thyroid medicine and leave the rest of it in the back of the linen closet (probably until 2017, when I'd stumble on it while cleaning and throw it away). This visit got you access to the thyroid medicine, which is useful stuff to have when you're trying to test whether you have a thyroid problem. That's a win, even if it came packaged in a load of crap.
posted by jon1270 at 4:23 AM on October 14, 2012 [10 favorites]

You say you can't disagree that you need to eat better. Any reason you haven't tried this less expensive, non-invasive way of treating your medical issues? I'd try an elimination diet yesterday if I were you.
posted by parrot_person at 5:59 AM on October 14, 2012 [1 favorite]

Another person with hypothyroid here. I agree that trying the Armour thyroid is a good plan - could be the cause of many of your woes. I'd add that exploring eliminating gluten as the guy suggested might also help - there do seem to be some links between hypothyroid and gluten intolerance (although not Celiac if I remember correctly). It can take some time to get the dosage right on thyroid meds - you'll want to follow up with that several times the first year you're on it. If it helps after that you'll need to test it yearly so finding a doctor you feel comfortable with who will prescribe it would help a lot. It's hard to sort this stuff out and frustrating if the only person you can find who is helpful is also cloaked in lots of woo.
posted by leslies at 6:02 AM on October 14, 2012 [1 favorite]

i'm going to re-frame your visit using the same facts.

you have tried many things in traditional medicine for all your pain, and nobody can give you a real diagnosis or relief from your symptoms. a doctor who has a different approach talked to you about several ways to treat your multiple and complicated problems, and also gave you what you wanted, even though your thyroid numbers and some of your symptoms don't necessarily match with a diagnosis of hypothyroidism. he mentioned adrenal fatigue (which, honestly, sounds plausible). he gave you some options of supplements you could take that might help. he also mentioned things you can do without any doctor at all in order to help yourself get better.

there's nothing ostensibly wrong with this guy's intervention - like other doctors, he used his training and experience to try to help you feel better. however, you went into that appointment already skeptical and untrusting of anything that doesn't scream TRADITIONAL MEDICINE. when you don't trust your provider, it's going to negatively impact your ability to get better. (the nocebo effect is well documented in puuuuuure scientific research.)

you don't have to trust this guy, and you don't have to take his supplements, and you don't have to go back. but traditional medicine hasn't helped you (from what i could gather from your question). what do you have to lose in being slightly open to a slightly different approach?
posted by andreapandrea at 6:12 AM on October 14, 2012 [9 favorites]

Hi there. I have a moderately severe case of CFS (more than housebound, not quite totally bedridden), have seen 80 billion doctors and work with a well-known, prominent specialist in the condition whom I travel to see who has been treating it for 25+ years and uses both prescriptions and supplements.*

I've been seeing that specialist since 2009. After having continually deteriorated for five years, over the past three, he has helped me get from totally bedridden to almost just housebound. The things I take on his recommendation include DHEA cream and B12 shots (which I do by squirting the stuff under my tongue rather than injecting, with his blessing). I find both very helpful. I don't take adrenal support stuff because I've just never gotten around to trying it (I hate doing new stuff, because it frequently goes badly), but I know patients of his that use it and feel like they get great benefit from it.

He doesn't recommend rhodiola (although that's a common CFS supplement). As far as your woo-woo doctor, yes, EB has long since been discounted as the cause of CFS (although significant titres can be a sign that Something is Up With Your Immune System), the foot bath thing is crap as you know, and trying cutting out gluten is a common recommendation just to see if it will help anything.

So having gone into that office on your guard, I don't blame you for having walked out of there feeling frustrated. But I'm with andreapandrea on the "why not try one thing at a time and see how it goes?" approach. If nothing has helped yet, maybe some of his suggestions will.

*Feel free to memail me if you want to know more about my doctor's approach and the laundry list of Shit I Am Taking.
posted by jocelmeow at 7:40 AM on October 14, 2012 [3 favorites]

This is kind of tangential and in no way am I offering medical advice based on your case since I don't know you but many of these symptoms you are describing have been shown to have origins in sleep disorders. You see fatigue, chronic pain, fibromyalgia, RLS in people with all kinds of sleep issues. Many people have really funky sleep patterns and have no idea until they get a sleep study. Add to those symptoms someone who is overweight or has a history of snoring and it adds to the possibility that these things are related. That isn't quackery either. It's very well documented in scientific literature.
posted by teamnap at 7:43 AM on October 14, 2012 [4 favorites]

Here is what I got from your question:

You don't sleep well.
You don't eat well.
You feel bad and you are very focused on how you feel.
You have/had Epson Bar.

Have you tried yoga? Even walking a little every day would help. Exercise reduces stress, detoxifies your body, and helps you improve your sleep. You should get at least 15 minutes of sunlight on your skin, every day. This will also help. Eat better. Drink lots of water and not much else (no sodas, booze, energy drinks). Once you have done everything non-drug related to help your condition, and you still feel awful, then go back to the doctors.

Your symptoms are not uncommon. I have had them, I have girlfriends that have had them. We can get our bodies all out of whack from not taking proper care of ourselves. Medication won't improve problems that are created by bad diet, lack of exercise, and lack of sunlight. Stress makes everything worse and worrying about your symptoms is the worse thing that you can do.

The doctor may be a quack but it sounds like Doc gives patients a little more control (real or imagined) in their own care. This can lead to positive results. If you believe that taking care of yourself will get you better, then you will take care of yourself, and you will get better.

Take care of yourself. It won't be a quick fix and, if you are like me (damn re-occurring Epson Bar), you will get worse whenever your life gets stressful. Take your focus away from being sick and put it on feeling better.

Embrace the Quack or not, but take care of you.
posted by myselfasme at 8:23 AM on October 14, 2012 [4 favorites]

There is more than one doctor who is a potential problem here. Yes, the functional med guy seems like a bad communicator and an inadequate doctor, pace his being a quack or not.

You describe your endocrinologist in terms that make me think I'd fire him if he was on my medical team. Yet you haven't talked about trying a new endo. Take the Armour for a while, and if it helps, approach a new endo with this evidence in hand. It may make them more sympathetic to the idea of subclinical hypothyroidism, especially in your case.
posted by katya.lysander at 8:27 AM on October 14, 2012

Related note: I have hypothyroidism but my blood levels were low normal. With my family history I convinced my doc to give me a script, but otherwise probably would have had a hard time. The important thing to know and perhaps politely remind them of is that the reference ranges are just norms and aren't perfect. If your normal level of hormones is high average, and you're down to low average, you're still operating on a deficit.

Although I would suggest a new medical team if you're not working well with them. Given the numbers of doctors you have, perhaps look into the new "health home" idea, where all your doctors work together, and are hopefully going to communicate better than they presently are.
posted by gilsonal at 10:14 AM on October 14, 2012

A few years ago, I was really sick. I had pneumonia, and my lungs just weren't working right. So, my doctor sent me to a pulminologist.

I got there, and things just didn't feel right. The staff was not helpful. When I finally saw the doctor, he was rude and condescending. He took a phone call about another patient while I was in the office. He spoke over me, interrupted me, shrugged off my questions, and finally prescribed me some asthma medication (even though I had no reason to believe my symptoms stemmed from asthma and he gave me no explanation). I left there feeling confused and dismayed, feeling disrespected, cheated, and uncared for.

In short, I feel like my experience with that pulminologist was quite similar to your experience. But note that my pulminologist studies a well-respected, up-and-up, totally scientifically-bound area of medicine. So, I want to suggest that the real problem you came across had to do with that guy's attitude and level of respect for you, rather than the particular kind of medicine he engages with.

I know nothing about functionalist medicine -- I've never even heard that term before. I think it's a good thing that you meet alternative medicine practitioners with skepticism and a clear head. But, at the same time, I suggest your question is focused on the wrong thing. You sound, here, concerned about the type of medicine being practiced when I think the real issue is the person who was practicing it. If you're still interested in attempting alternative medicine, find a different practitioner. Any doctor, whatever their specialization, who just steamrolls you, interrupts you, and dismisses your concerns is both a bad doctor and an ass.
posted by meese at 10:45 AM on October 14, 2012 [3 favorites]

I'd try just the thyroid meds and see what happens. After all, if you start taking everything at once you'd have no way of knowing which thing is working anyway.
posted by Miko at 10:52 AM on October 14, 2012

I wouldn't go back to Doctor Foot-Bath, but there is nothing inherently wrong with the idea of Functional Medicine, I sort of think of it as the natural scientific outgrowth of osteopathic medicine, and they are "real doctors". Boiled down to its essentials, functional medicine says the systems in your body are all interrelated, not individual components like in a car engine. So making changes to your diet, exercise and stress management can bring benefits to your whole body health. The trick is to find the Functional Medicine physicians who base this on actual science and not on what you call "woo". If you look back through your posts, I got the impression that all the docs you've seen, from primary care through specialists on through to the quack have all suggested changing your diet and trying to get moderate, safe physical activity. They aren't wrong here. If I were you, I would try to educate myself, and also become a little more assertive in dealing with health care providers. There is absolutely nothing wrong with saying to their face "I don't like your patronizing dismissal of my concerns, and I don't think you are the doctor for me," and then getting up and walking out their office. Please don't let yourself be pressured into buying crap supplements-- it is a scam, a con game, the 21st century version of snake oil. In my own health care, I've found good results with the Paleo diet, and in particular I will recommend Robb Wolf and his Paleo Solution Podcast. I need to warn you, sometimes he talks like a drunk frat boy, but Wolf is an honest-to-goodness research biochemist who became similiarly disenchanted with the "widget" approach to medicine that most practitioners take, and began investigating diet and exercise and functional medicine. He is such a big believer in exercise that he eventually bought a gym to bring that side of health more into the lives of his clients. Wolf also gets into the nitty-gritty science of things, drilling down in great detail (often more than I can understand) to the documented, repeatable, proven scientific studies that are being conducted today across the world. And to me, this is the mark of a great pracitioner and teacher-- he wants you to understand the science behind what he is saying, and provides links to the research he cites. Wolf also does a good job in finding the best specialists in different fields and bringing them on his show. It's an interesting mix of medicine and exercise science. Finally, if you poke around on his website, I think there is a network of trusted functional medicine doctors-- there may even be one in Milwaukee. Good luck in your journey-- I've been through a lot of the same systemic problems that you have, and if you need someone to talk to or more detail on anything I've mentioned, drop me a memail. Take care of yourself.
posted by seasparrow at 11:07 AM on October 14, 2012 [2 favorites]

Thanks everyone for the thoughts. It's really helped put things in perspective. I've got a lot more to ponder, but I think ultimately I'm going to give the thyroid medicine a go and see where it takes me. In my frustration I forgot my own rule about trying one medicine at a time because of not knowing what might be causing the side effects. (I've had more than a few, and some doctors don't like working with someone that doesn't have expected responses to medicines, so yay.)

As for the eating well and exercise part, both are things that I am willing but unable to do at the moment. When I say fatigue, I'm not talking about feeling a little tired, I'm talking about not being able to take care of myself fatigue, and cooking a simple meal is not possible. So I'm limited to what can be heated in the microwave, or even better, no cooking. Bonus is I'm eating more fruit, downside is I'm also eating a lot more carbs and processed food.

My goal would be to get back on the South Beach diet if I were able. I had good results with it a few years ago. But I remember it took a lot of planning because it was a different way for me to eat and think about eating. Meals took prep time. If I had a bit more money, there are some local companies that do "fresh" prepared meals but the cost is just outside what I can do while not working. I'm fighting for disability, if I get it, that is the first thing it's going towards (the next is a house cleaner).

Exercise is a problem too, if I have the energy to attempt it, I end up feeling much worse afterwards. The pain and fatigue post exercise leaves me bed ridden for a day or two (or three!) most of the time (but on rare occasions, it doesn't, and I have no idea why.) I spend most of my time trying to conserve energy so I don't feel worse, because even small amounts of exertion are enough to wipe me out.

Sleep is a huge problem. I am working with a sleep doctor and have had a sleep study. No sleep apnea but severe periodic limb movement and alpha wave arousals from pain. Even when I don't consciously realize I'm in pain, it still causes problem. It's been a rough road, and I'm getting some relief at night but not total relief.

And yeah, I probably need to find a different endo, but having tried to research it, it sounds like the reaction I got from the endo I saw was not all that different than most people's experience with endocrinologists. So it's left me in a weird place, unsure who to try next.
posted by [insert clever name here] at 11:55 AM on October 14, 2012

There's probably little harm in trying the Armour Thyroid and seeing what happens. There is the placebo effect (if it helps at first and then you fall back to baseline, it's probably just that) and hyperthyroidism is it's own issue, so I'd read up on that before you start taking the supplemental hormone.

You seem to have encountered two kinds of doctors. Doctors who don't know exactly what to do with you do they do nothing and now, Dr. Woo who will write you a script for whatever you want, but has a whole host of treatments in mind for you, some of which violate known scientific laws. You'll get to dangle your feet in the same sort of electrolytic bath that I use to clean rust off of old tools, so there's that). If people want to get up in arms about medicine for profit, I know whose head I'd recommend we put on a spike.

The golden lining here is that if you find the Armour Thyroid really helps you, you might be able to go back to a regular doctor, tell them this, but that you're tired of getting the hard sell on a pile of woo and get them to write you the prescription.

The most mainstream doctor will tell you there's a lot to be said for proper diet, exercise and sleep, and based on statistics I've seen, will probably treat you like royalty if you go out of your way to get those things.
posted by Kid Charlemagne at 11:57 AM on October 14, 2012

I probably need to find a different endo, but having tried to research it, it sounds like the reaction I got from the endo I saw was not all that different than most people's experience with endocrinologists.

That's because people are very likely to complain about their doc on the internet, and much LESS likely to come on to the internet to note that they like their endo. I have thyroid and I really, really like my endo. Ask your pain management doc for a rec.
posted by Countess Sandwich at 12:45 PM on October 14, 2012 [1 favorite]

This is just my allopathic medical perspective, but I had not heard of functional medicine, so I clicked on the Wikipedia link that seasparrow provided, which states:

"Functional medicine, in agreement with modern medicine, holds that the entire "patient story" needs to be heard and understood in context in order to truly help the patient. Where functional medicine differs from mainstream medicine is its willingness to employ treatments and drugs which may not be well evidenced by clinical research..."

In your shoes, that would really turn me off too... but I can certainly see the appeal of going to a doctor who's willing to prescribe anything you ask for and always has more ideas for prescriptions you can take or treatments you can use. Be very wary. If you are taking thyroid hormone for normal thyroid levels, be on the lookout for symptoms of hyperthyroidism that could result as side effects. Be very cautious about taking supplements. You may know this already, but many people look at supplements as "natural" or "harmless", but they fact is that they do have chemicals in them just like other drugs, and they can have serious side effects, and they are not regulated by the FDA and thus the pills you buy may not even contain the ingredients they say they do on the bottle, or may contain additional, unlabeled ingredients.
posted by treehorn+bunny at 1:45 PM on October 14, 2012

While my anecdotal experience does not equal actual data, I will tell you that thyroid issues are notoriously tricky to treat in some patients, and there are a lot of different opinions amongst endocrinologists about what the optimal ranges should be for all the thyroid tests. I have been on synthetic T4 (levothyroxine) for four years, but still have thyroid symptoms and my test results were kind of similar to yours, so I went to a semi-woo doctor after trying several endocrinologists and got Armour. Even after just a couple of weeks of Armour, I feel a huge difference in my energy levels. Now that you have the prescription, try it, and either contact Armour to find other docs in your area who prescribe it, or ask your pharmacist. They are likely to know which endocrinologists in your area prescribe Armour, and then you can try to contact one of those doctors. Hopefully you will find one who is less woo while also treating your symptoms.

Short version: try the prescription, and also try to find a doctor you are more comfortable with who will continue to prescribe it.
posted by bedhead at 2:27 PM on October 14, 2012

It's not a crap question! At all. I completely understand the impulse to post on Metafilter. I posted on here about my own hip pain a while back and got really good answers. Previously, I read on here about supplements that fixed my fatigue. I took the info to my doctor and he was skeptical but when the test results bore out my idea, he went along with it. There is the rare great GP or specialist who can catch mistakes others make. But the zone you're in right now is a perfectly familiar one, at least to me.

Don't be afraid of taking control of your own treatment-- though do be aware of your blind spots. Honestly, I have fixed a lot of my own "insoluble" medical problems myself. Doctors have some idea but the time it takes them to organize the information you give them, plus the information that's in their heads, plus the fact they have so many other patients to see, means they will not always get it right. I know a girl who was diagnosed with lung cancer and turned out to have a cold. I know a woman who was diagnosed with severe ADD and seemed to everyone to be impulsive and turned out to have a brain tumor. My own father was treated for shortness of breath with antibiotics twice... diagnosis pneumonia twice before collapsing with lungs full of edema from a failing heart (by the way he's FINE now... that's the awesome part of medicine). But he never even had a runny nose, it was just a rushed diagnosis. My mom was refused antibiotics by her GP when she had an ear infection and ended up at the ER. The truth doesn't always come out right away.

I guess I have no REAL advice to give here, which sucks. I just wanted to say I don't think you have a stupid question above. The concerns and the frustrations and feelings of dismissed are part of the situation. I hope that after a few days, the yucky feeling goes away and I hope you feel better soon.
posted by kettleoffish at 7:39 PM on October 14, 2012 [1 favorite]

"As for the eating well and exercise part, both are things that I am willing but unable to do at the moment. When I say fatigue, I'm not talking about feeling a little tired, I'm talking about not being able to take care of myself fatigue, and cooking a simple meal is not possible. So I'm limited to what can be heated in the microwave, or even better, no cooking. Bonus is I'm eating more fruit, downside is I'm also eating a lot more carbs and processed food.


Do you live with someone who can make you real food? Even just some rice and beans?

I was always thin and fit and subsited mainly on quick sugary carby snacks and processed foods until last year. I stopped eating added sugar (except for small allowances like a sponnful in a coffee) and stopped eating processed food and it's amazing how much less foggy I am. I do slip here and there and can really feel a difference now in my energy levels and digestion when i slip. Eating probperly takes a huge amount of time, preparation, and planning. HAving someone to help you makes it a lot easier. Im my case I mostly eat dinner with a friend who likes to cook. I buy most of the food on my way home from work but she does the labor. It's worth it to look for some alternative arangement where you can properly feul yourself, and once you are doing healthy things, look for a better diagnosis.

I've been trying to improve on healthy eating, regular sleep, excercise, and stress reduction and thus far I've seen the biggest impact with healthier eating. May start there and imcorporate some excercises like those that are prescribed for bedridden people to keep limb strength.
posted by WeekendJen at 10:27 AM on October 15, 2012

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