Hi, I live in the New York metro area and I can tell you that New York is the epicenter of strictly allopathic medicine. It's dominated by the large number of prestigious medical schools, who turn out large numbers of graduates, who tend to stay in the area. I think your chances of finding either an endo or a rheumy who thinks outside the box is pretty slim. You might want to consider a functional medicine doctor - they look for root causes, and are generally willing to look at things holistically and not just stick to putting bandaids on symptoms. If you google "functional medicine" it will show a link to an accrediting body, where you can do a physician search. Speaking personally, I have found one recently (not in NYC) who is testing me for things that no other doctor has even remotely considered. Even if it turns out the news is not good, at least I will finally have some answers and nobody will dare say to me "but you look fine" and "It's all in your head".

Good luck, and don't give up. Persistence pays off!

Hey Ford,
Thanks for bringing up Functional Medicine...I had no idea what it was. I did a search for my area, and they are few and far between. I will have to consider making a commute to see a Functional Medicine Dr...I wonder if any would be willing to do a paid phone consultation just to see if they feel they have other options for me, and if I feel it is worth a commute?

Hi Lulu,

Many functional medicine doctors will indeed handle things over the phone - although I think most will insist you see them in person at least once. Which is as it should be. I first went to one (although I didn't then know the term) back in 1989, when I watched him on the old Phil Donohue show! I drove to Great Barrington, MA to see him, but after that it was phone calls. Things have evolved a great deal since then, but he did identify one important thing and fix it. I also used to see one in NYC who discovered my celiac. And now the new woman I'm seeing is up on things no mainstream doctor has ever heard of. Do your research - like any other field, there are hucksters and money-grubbing types. You also have to be careful of the ones who believe in "woo" - stuff like crystals, and vibrations, and (to my way of thinking) lots of "colon hydrotherapy". You want a doctor who is willing to use western medicine when absolutely necessary, but will focus mainly on addressing the deficiencies that gave rise to your condition. I always check healthgrades, vitals, and ratemds before I see any doctor. These sites won't tell you how competent they are, necessarily, but you'll find out their background, and the patient comments will give you a clue to their personality. The other thing you might do is look at the list of functional medicine doctors and start googling them. Many have websites, and if you start daisy-chaining from there you will get more information - patient review, articles they've written, what other doctors think of them, etc. The other important thing to know is that you have to keep your relationship with your PCP and other doctors - functional medicine doctors do not do emergency care, or see patients in hospitals. They are for the difficult chronic things that western medicine has failed at. Use your regular doctors for the sinus infection, the cut finger, flu shot, etc. I will do a little more research and find some other sites to check, because sometimes they go by other names - like Integrative Medicine, or Holistic medicine. I found a wonderful doctor for my daughter on this site: http://www.naturalhealthadvisory.com/directory-listings/
One other thing I've noticed: the better ones have had careers in traditional medicine, often in a specialty, and often having taught in medical schools. Some have trained only in "family medicine", and in my experience they are less diagnostically astute when it comes to weird illnesses, but fine if you just want to learn how to live to 100, lol. But there is always the exception that proves the rule. Save your pennies; if you can find the right person, it will be well worth the trip.

Hi Ford,
Thanks for taking the time to write such an informative post.
I I did do some research, and the Functional Medicine Dr's within 100 miles of me have or careers in Western Medicine- I've found some Functional Medicine Dr's that are also Pediatricians, Internists, Integrative Medicine, Psychiatrists, and the list goes on....
I would think maybe I would want an Internist...but I live in RI,, and the closest Dr in the search came up in MD...I tried searching for Docs with specialties in Fibro, Immunology or Auto-Immune, but none within 150 miles from me.

Would you mind explaining what sort of tests and how an average visit is different is different that going to a traditional Rheumy visit?
You mentioned all different blood work that your regular Dr's have not tested for..do you mind sharing some of that? I'd like to hear more details about what happens at a Functional Medicine Appt if you don't mind sharing?
Thanks, LuLu

Hi Lulu,

Could you possibly go to the Boston area? I did a quick check on both naturalhealthadvisory.com and functionalmedicine.org and there are numbers of doctors who might have potential. I would not restrict myself to strictly looking for a rheumy or immunologist - generally speaking, the type of doctor who practices functional medicine has a wider view than western doctors, and there is more blurring between specialties. My current FM doctor is a former oncologist, for example. What I did when I was looking was make a list of anyone possible that I found on the websites or elsewhere on the web, did a check of backgrounds and patient reviews, then called up their offices with specific questions. In my case it was "are they willing to supervise iodine supplementation" and "do they treat thyroid disease with natural thyroid" and "do they treat autoimmmune diseases". Also cost - do not neglect to ask! It's always a crapshoot, but hopefully doing your homework increases your chances of finding a good one.

My experience has been that you get a lot more time at the first appointment, and they want to know pretty much your complete health history. It's more like "back in the day" when you sat in the doctor's office and they actually LISTENED. You may or may not get a physical. They might if your symptoms indicate a need, but they might just talk to you, especially if you bring all your recent bloodwork results. They might order a lot of standard blood tests, but they might also order things like a saliva test to determine cortisol levels, other hormone tests,or a 24-hour urine collection for heavy metals like mercury or lead. You need to be upfront with them about cost if that is an issue. In my case I got lucky, in that the tests that my doctor ordered for me are a bunch of genetic tests and related unusual blood tests, such as MMP-9, MSH, TGF-b1, VIP, but they are all done at Labcorp and covered by insurance. (you can look at labtestsonline.com for an explanation of any blood test).

The doctors themselves typically do not take insurance, but will give you an itemized bill to send to your insurance. Be clear with them that it's important to do testing that's covered by insurance (like using Labcorp) as much as possible, and minimizing the stuff that requires private labs to the extent possible. The reason that they don't generally take insurance is that otherwise their hands are tied by the insurance companies, who dictate what they can and cannot do. The doctor that I found for my daughter near Buffalo, NY is an exception - she takes insurance, and somehow tries to make it work. If you can find someone who practices outside of a major metro area, or in an area that's not inhabited by millionaires, the doctor's fees are likely to be much more reasonable. Also, someone in solo practice is likely to charge less, and be somewhat more available, than someone in a large group practice with multiple staff and a sleek office with a lot of overhead.

The only other thing I would say is to remember that they are not God - sometimes nobody can help with certain things. But generally, I think if you have a decent PCP and rheumy, and work closely with a talented FM doctor, you've covered the bases of what is humanly possible. I hope this helps! Feel free to ask away :)

Thanks Ford!
That is great info- I travel to Boston all the time. That is where all of my specialists are...I wonder why no Functional Medicine Dr's came up there in my search..I will try again using the zip code for Mass General and see what pops up.
Thanks for the tip about lab tests...a lot of my lab work is done at home with my nurse, Fed EX picks up my "Lab in a Box" and it goes straight to Lab Corp and I get my bill from Lab Corp, so I'm quite familiar with them.
Cost...Payment Plans? I have found that with MUCH persistence I can usually get my insurance to pay for any uncovered service - at minimum the out of network fee- as long as I can get a Dr willing to say there is medical necessity. With rare Chronic Disease this should not be too hard,...My current insurance is only supposed to cover Docs in RI but I was able to manage full coverage for all Docs at Mass General, so I can do my best for full re-reimbursement if I can get a medical Dr on my side about necessity.
I would be so interested to see what tests would be done that have not been done so far...so much is left unexplained, and while I know no Dr is god, if there are possible clues, I sure would like to find out.
Thanks for all the great info and your time :)
LuLu

Hi Ford,

Thanks so much for your reply and subsequent posts! Im still trying to digest and figure things out. It can be overwhelming. I wonder if you would mind sharing the names of those NYC doctors whom you found so helpful. Then I can see if it makes sense to see them as I do my ongoing research. I saw my OBGYN yesterday for a check-up and updated her on things and she said something interesting. She said she doesnt necessarily think the stomach complications on thyroid meds is definitively suggestive of another auto-immune. I do have Hashimotos but so does a very large percentage of the population who dont develop other secondary autoimmune disorders or complications. If you dont mind my asking, where is the doctor youre currently being tested with located?

Ive been to Dr. Ash ad Dr. Kellman in NYC who most likely come under the functional medicine heading but havent had lasting luck with either.

From what youve written, it sounds like you may have some thyroid complications going on as well. You mentioned iodine supplementation. Would you mind sharing a bit about your thyroid story? I saw a nutritionist and did various supplements including iodine. The only thing that seemed to elevate the underactive thyroid though was either a bio-identical or synthetic thyroid dose. The synthetic seems to cause less stomach discomfort however (funny enough) though I still get the symptoms (bloat, constipation) which is what Im trying to get to the bottom of. The GYN said it sounds like an issue of motility that somehow the thyroid pill is triggering. My body goes back to normal when Im off the pill or decreasing/playing with the dose will help alleviate some of the symptoms but they will only vanish if I stop the pill for a good 3 weeks.

Does anyone know whether armour thyroid is worth trying? Ive heard good and bad about it.

Thank you for your time and anything else you can share with us!

Patricia

Hey Ford,

I'd like to pick your brain again!
My cousin is a chiropractor ( I know, for some reason lots of people have issues with them) but I asked him if he was aware of any decent Functional Medicine Physicians. He told me of his Mentor Mark Hyman who he has studied Nutrition with some years ago...Here is a link to his site and the services he offers...can I get your 2 cents?

http://www.ultrawellnesscenter.com/the-ultrawellness-center-staff/

Thank you so much for your help!

LuLu :)

Hi Lulu, I just went to Mark Hyman's site and just about had a heart attack when I saw the prices listed in the FAQ's. I know that he is a recognized big name in Functional Medicine, but you would have to find out if he truly gives personalized, individual care or you just become part of a big income stream. In my long (too long) experience with doctors of all types, I have found that the ones who reach a certain level of fame tend to be less attentive, and more focused on their reputations, income, and published works, and less on patient care. And they tend to be so busy that they no longer spend as much time doing research and keeping up with the latest developments. But that's just my opinion. When I started going to an integrative doctor in NYC in 2003 he was just getting started. And for the first few years he was awesome. But as time went by he got way too busy and overbooked, and way too tired, to the point where he made more than a couple of medication/supplement errors, missed diagnoses, and was yawning his way through the consults. Then he kept adding staff, and I did not like being charged his rates for a short phone call with a PA. It went from very personal, to being a cog in a machine. So that, on top of some very bad experiences with big-name allopathic doctors, is the reason for my skepticism about these big, glossy practices. I want someone without an excess of ego, with a mind that is scientific and driven by curiosity. And I realize that's a lot to ask ;) I would think that Dr. Hyman's practice would be up on the latest research in FM diagnosis and treatments. Why don't you call and ask a lot of questions? And pay attention to not just the answers, but to what your gut tells you as you listen. The music is just as important as the words.

Hi Patricia,

I just started on thyroid meds a week ago, although my new doctor thinks I have been hypothyroid since childhood, and i agree with her. I first got put on Synthroid by a mainstream endo, who first looked at my TSH (5.7) and stated that he doesn't treat until it reaches 10. I pointed out my loss of eyebrows, waterlogged ankles, lack of sweat, exhaustion, etc, etc and he agreed to Synthroid only. I took it for two weeks out of desperation, and it gave me bloating, gas, sleeplessness, and general misery, so I stopped it. When I got to my new doctor, she said I was severely hypothyroid, due to the ratios of the T3 and Reverse T3, and said that I was probably a poor converter of T4 (which is what Synthroid is). Your body is supposed to convert T4 to T3. So she put me on Cytomel, which is T3 only. I've been on it a week, and so far so good. No stomach issues, and if anyone is going to have them, it's me. It's going to take a few weeks to see how I do, but nothing bad so far. So I'm wondering if you might be a poor converter of T4 as well, and Synthoid is simply the wrong thyroid med for you. Any functional medicine doctor can address this.

As for recommendations, I'd rather not name names of my personal physicians on a public site. If you start researching, and really do your homework, you will find good functional medicine doctors. They're hiding in plain sight ;)

Thanks Ford,
I kind of got the same impression...I felt like I was looking at an online magazine with ads for the latest books on health and nutrition!
It felt a little Dr Oz-ish to me (no offense meant to those who like Dr Oz, just not my style)
And I wasn't sure if those were the typical prices.
Even the pics of the staff looked like head shots for the dust jacket of a book :)

Anyway, I shall continue my search!
Thank you for your input!
LuLu

Patricia,

I am in NYC give me a call Nadine 646 337 6649

Hi Ford,

Thanks. Very interesting that you have stomach issues on a thyroid dose as well. Nice to know I'm not alone. I am trying 25mcg of Tirosent starting tomorrow. The Endo I went to suggested that perhaps my body didn't like the fillers in the generic synthroid and as it's produced all over the world - the controls fluctuate as to guidelines - so there could be variances. If it happens to be the cause - then I will have struck gold and seeing him was worth it. Thanks for sharing some of your T3 - T4 journey. One of the functional doctors I went to in NYC was dosing in accordance with that - but it still caused extreme stomach issues (also was bio-identical which I think my body likes less). I'm considering trying someone in PA. We'll see what I find out when I call his office. Are there any specific questions you would suggest I ask? I mean, apart from giving a brief background of where I've been and what's going on? Many thanks Ford and I hope you continue to do well on the Cytomel. :)

Patricia

Hi Patricia,

When I go to a new doctor, I bring a two-page document with me, with current Dx's listed, a list of all meds and supplements, a list of all allergies and other negative reactions (such as to food or medications), a list of what I can eat (or can't eat), and a few brief bullet points with significant dates of bad medical events in my history. If the doctor actually reads this, it saves a lot of time. Mostly when I get there I just explain the presenting problem and let the doctor guide the conversation, unless they are not getting it and I have to intervene. I don't like to do too much leading in the first consult, because I want to see where they go and how they think...are they cautious and play only by the rules, or are they willing to think beyond the obvious? Are they flexible and curious? If I do too much talking, I won't find this out. Many times I've already researched a particular topic and am going in with a pretty good idea of what the Dx might be, but I don't necessarily tell the doctor that. I want to see what they make of the symptoms. I've also learned to go in with the knowledge that it's not possible for one person to know everything. Every doctor, no matter how brilliant, has gaps. There is just too much to know. When they stop being able to help, it's time to move on.

Re the thyroid and GI issues, I had horrible esophageal and gut spasms (not pain, just this awful squeezing and clenching that made me feel almost faint) and I discovered that this can be a symptom of very low thyroid. It got quite a bit better when I started iodine (starting very slowly, at 150mcg, and now take 6.25 mg, not the crazy amounts that some people take). Most allopathic doctors are terrified of iodine, but many functional medicine doctors recognize that the thyroid can't be healthy without it, and the rest of the body needs it too. It might be something you could look into - if the thyroid meds are making you feel worse, and not better, my thought would be to start looking in another direction. That's not medical advice, that's just me, and what I might do.

Hope you find someone you're happy with, and can start feeling better soon.

Hi Ford,

Thank you! I actually meant more when you're calling to find out more about the doc - along with research you've done - what are some of the questions you ask to see if they've had experience with other folks such as yourself (the complicated ones who don't fall within a TSH blood test!). This is helpful though!

Also - extremely interesting to note what you say about esophagus issues. I keep forgetting to mention that - that has been a new symptom for me - that at times frequently the food doesn't seem to go down as quickly/easily and I have to drink lots of water. Of course it will depend upon what I'm eating but overall this is new. I was taking iodine - Formula II Iosol food supplement (non-script) though a nutritionist I was seeing. I no longer needed it when I went on the thyroid pill - supposedly. I need to find a good doctor before I go that route.

I have the Tirosent 25mcg but am a little resistant to actually try now because of posts from other folks I've read that have experienced more hair shed. We'll see...

Thank you again!!