I'm tired of being made to feel like I'm crazy

[Penguinz68]

So I went to the new thyroid doctor today and felt totally and completely blown off and unvalidated.  :(

Quick background:  12 lb gain in 2 weeks, total 20.  Exhausted, cold extremities, brain fog, achy..on and on.  I'm trying to train for a marathon (my 4th), so I'm not uneducated when it comes to nutrition and exercise.

She pretty much said my blood work from September (TSH) was "normal" (all of my lab work is on low range of normal, including below normal for vitamin B and D) and blew off the rest of my symptoms as far as I'm concerned and started talking about calories out versus calories in.  DUH!  She also mentioned that I should document my food intake and make sure I'm really running 12-15 miles a week like I said I was (because a GPS watch that tracks my running couldn't possible be right).  She also suggested my body is changing as I'm in my 40's and that I could just be stressed because of my dad passing away.  I flat out told her I was raised by an alcoholic mother who on occasion beat me, I have never not known stress.  Yes, I miss my dad and am grieving, but we also knew he was dying (not to sound cold) and had our time together and chance to say our goodbyes...and this all started before that.  I take Aderral for ADD and it's a stimulant.  It helps with the brain fog, but if I don't take it, I am so exhausted I can barely get out of bed.  A medicine that helped me get more focused is now the only thing that makes me feel "normal" energy wise.  I told her I had a big issue with that.  She pretty much brushed it off.  I'm tired of my fingers getting cold and numb as soon as it gets chilly, tired of being tired, of not having any sex drive at all (sorry for the TMI)....

She ordered some blood work (CMP..no idea what that is, Cortisol in the morning, and ACTH...no idea what that is, LH and Estadiol).  When I asked her about testing my free T3 and free T4 she said there was no need to because my TSH looked fine and she really isn't concerned about my thyroid.

I almost walked out in tears.  I don't feel like myself.  I'm not even sure if I want to bother with the blood work and go back to see her.  Am I being unreasonable?

[Barb135]

No, I've never had a consult with her and probably would not.  For some doctors, it doesn't matter how you present your info, they aren't going to listen.  I don't think she'd give advice a whole lot different than we give here on MH, and the bottom line is:  It doesn't matter what anyone tells you you need, if your doctor refuses to follow your wishes, you're going to have to keep searching until you find one who will.  

We (or anyone else) can tell you, from now till doomsday that you need FT3 and FT4, antibody tests, that your results warrant a dx, etc....... but your doctor's word is final, unless/until you find a doctor with a different view point.  

[JMC72]

HAve you ever had a consult with her? I saw on her site she does thyroid coaching...

I was thinking of doing one because she said she gives advice on how to present the info and symptoms you have to the doc in order to get them to listen to you and as you can see... What I'm doing isn't working!!! LOL!!!

[Barb135]

I've read both Mary Shomon's and Dr K's books.

[JMC72]

I looked into this more thanks to you... lol... and I don't know if you read this book but it is very informative and has helped me understand things...

That dallas doc is on his list so that's good...

Mary Shomon has also intervied him and has a review of his book which is good.

I think, like she states, using his methods along side an endo or GP who "gets it" is the best way to go and I will keep you posted on how it goes...

Thanks for looking out!!!


http://www.thyroidbook.com/index.html

http://www.thyroidbook.com/practitioner-locator.html

http://www.thyroidconnections.com/

http://thyroid.about.com/od/alternativeholisticinfo/a/thyroid-symptoms-when-lab-tests-normal-datis-kharrazian.htm

http://thyroid.about.com/od/alternativeholisticinfo/a/chiropractors-thyroid-kharrazian.htm

[JMC72]

Hi! I hear you...

It's so frustrating isn't it! I have been sick for 5+ years... ever since I had my daughter in June 2006 and I have had psychiatric evaluations, been put on drugs that made my hair fall out, got PCOS and was sick for awhile, had multiple MRIs to see if I had MS, 3 neuros! eye doctors, Gastro doctors, ENTs, you name it and I am just fed up!!!

I am sorry you had/have a hard time too...

It just isn't fair...

When I get a confirmed dx from SOMEONE... I am going to cause hell with all those docs who said it was in my head! That you can count on... I can't wait to give them a piece!!!

Take care and thanks for all your help!

[Barb135]

No argument from me, that the medical system is corrupt!!  

Yes, my condition was obvious (original TSH at 55+), but my treatment has been far from easy going.  Many of us have had counseling recommended, in lieu of adequate thyroid treatment, myself included.

That being said, there is a group of doctors, mostly chiropractors and naturopaths, who follow a certain protocol that often is just as bad for some people as the conventional approach.  You're right - these doctors don't push unneeded drugs because they represent a drug company.  These doctors push a set of vitamins/minerals and a protocol, that can be purchased only from them or another doctor just like them.  These vitamins, etc are not cheap either.

As always, follow the money trail.  Again, best of luck.

[JMC72]

He doesn't take insurance and in my area, the docs that don't take insurance are the better ones, I am sorry to say...

They take time for you and don't rush you out the door in 15 minutes and do not have to worry about pushing useless drugs on you because they represent this or that drug company and they think outside the box, which is why they don't except insurance...

You happen to be lucky. Maybe your condition was abvious? I don't know but I have been to too many doctors and have been told that's it all in my head and that I should get couseling for too too long as I get progreesively worse each day...

I stand by doctors who do not take insurance because the system is corrupt and they know it!

I have been doing this for awhile...too long and whether it's him or someone else, I'm confident in my choice but thank you for your advice.

[Barb135]

I get all my blood work done at Quest, at no cost to myself, because it's covered by my insurance.   Nothing I saw indicated that this doctor accepts insurance - that's my first red flag... if he doesn't accept insurance, he's got unlimited access to your money.......

I do wish you the best and hope you will keep us posted on your progress.......

[JMC72]

I hear you...

He makes it clear though that the $250 is just the consultation.

He then works with Quest, I think to get a discount labs and tests EVERYTHING...

They sent me a questionaire and it really is thorough...and makes me comfortable but I take your warning seriously...

I live in NYC and his prices are cheap compared to some of the docs in my area and unfortunately the docs that do take insurance all have merged into these "groups" and they have no time for you... I have been to plenty...

[Barb135]

We all need doctors who will support us, but do be careful.  There are those in the chiropractic field that sound "too good to be true"....  

I watched several of the videos; did not cry; yes, he "gets" it, but notice that the videos don't really give you a lot of info; that insures that he also gets your money - $250 is only the beginning...... and his advice may not be the panacea you seek.  Caution!!

I'll do more reading on his web site, in hopes that I'm wrong.......

[JMC72]

http://dallasthyroiddoctor.com/

Check this doctor out...

He consults with you remotely for a $250 consult and will order every lab under the sun...

I just found him the other day on YouTube...

http://www.youtube.com/playlist?list=UUONvCuEp5KKiJ9zy33Duw9A&feature=plcp


You HAVE TO WATCH his videos! You will CRY because you will see yourself in EVERYTHING he says but at the same time you will feel relieved that he GETS IT!!!

I am in the process of scheduling a consult and I will keep everyone posted...

I have been to 10+ doctors for my symptoms and it's the same sh@t... it's all in my head...
This doc knows better!

Best of luck!

[pjwg]

There is nothing on it unless I can enlist people who really know what they are talking about from personal experience...and hopefully, like you say, people will know to seek out a knowledgeable person in the forums.

[pjwg]

Don't worry about it, Barb.  Not every idea is a winner after all. :-)

[Barb135]

I tried FB and didn't come up with much of interest; maybe I didn't hit the right link; I'll try again........ thanks.

[Barb135]

Iodine is most often contraindicated for those of us with Hashimoto's and should never be used without direction/supervision of a qualified physician.

I get Dr Mercola's newletters, also, and while some of them are good, one must always be careful, because, as you said, medicine is not a "one size fits all".  

[pjwg]

Here you go, Barb135.  

When I look in the mirror, I see my f---.

And when I want to read a good mystery, I pick up a b---.

I hope that can get around the restrictions. :-)

[FurballsMom]

These stories sound familiar.  No doctor in my circle of doctors is interested in doing anything more than test the TSH and won't test the free T4 or T3 or the antibodies.

I have the same story as several here, in that I can't see an endo without a referral.  Well, I can't get the referral if the doctor won't do the additional tests.

I do get natural newsletters that talk about this.  How so many people are in the same area of concern with "thyroid limo land".  I decided that the only way I was going to get anywhere was to follow the natural doctors' advice and find a natural iodine supplement and take the amount suggested by the natural doctors.  Google "Terry Talks Nutrition" for the proper amount and for the other information he suggests for natural help with the thyroid for those of us who fit this category of the doctors not listening just because the TSH is normal.  This doctor is the one who uses a very good illustration about shoe sizes in comparison to sluggish thyroids.  The only ones who get the help they need from conventional medicine are the ones at either end of the shoe size chart.  Everyone else is considered "average" or "normal"

Actually, shoe manufacturers and hat manufacturers are the same in this illustration.

The one size fits all mentality for the thyroid doesn't make sense either, but that's how conventional medicine and insurance treats it.  And, as someone pointed out, they're not really interested in getting to the root of the problem.  When you understand how their game works, then you realize that it's really called "Follow the Money".  The same thing applies with their new increased RDA for vitamin D.  They weren't interested in immune health or optimal health when they finally "gave in" and increased the RDA for that either.  They were only looking at the minimal amount for bone health.  

Can you imagine how many people would feel better if their thyroids were functioning well and their vitamin D levels were optimized?

If you go to Dr. Mercola's website, you will find out, too, that what I said about the "Follow the Money" scheme is exactly that.  And, too, you will find out why natural medicine was snubbed out and treated as inferior.  It doesn't really have to do with natural medicine being no good.  And, the two schools of medicine to not really need to butt heads.  Integrative medicine, where the two come together with the common goal of what's best for the patient is a better school of thought.  Dr. Mercola actually explains very well and very thoroughly what happened in history and why natural medicine is still treated as quackery.  Well, it doesn't need to be.  And, it doesn't need to be one kind or the other.

But, in the case of thyroid limbo land, it's clear that natural medicine is going to be the only thing that really works.  Especially, when so many doctors prefer to be derisive and dismissive with people who can only fit into thyroid limbo land.  Being dismissed and given an antidepressant pill for the trouble of trying to get helped is highly unfair.  And, those things won't work for a sluggish thyroid problem.

Or, for the other end of the works:  the adrenals.  No one but an endo is going to test those.  The adrenals work with the thyroid.  If one end isn't working, the other end isn't working either.  So, make sure you address the adrenals, too.  The adrenals are the little organs that sit on the tops of your kidneys.  Though no one tested it when I had renal failure a few years ago, the only thing that makes sense as to why I had an unexplained acute episode and got dehydrated in spite of drinking plenty of water until I got to the point where I couldn't even hold down water is adrenal fatigue.  Of course, if I were to mention that now to any doctor they would undoubtedly be just as dismissive as they are with the thyroid gland.

So, don't forget to address the other end of the issue, since the adrenals and the thyroid are meant to work as a team.

[Barb135]

Most of what you're talking about, we can get right here on MH - we can share our wisdom (gained from experience), give advice regarding proper testing/treatment, etc.  

What we can't do is make our doctors do something they either weren't taught in medical school, because the guidelines/protocols aren't being changed to keep up with scientific evidence. We know what we, and others in our positions need, and we can talk till we're blue in the face, but if the patient can't get their doctor to pay attention and try something different, the patient is stuck finding another doctor, who will listen, which is not easy, either.

I'm sorry, I'm not "up" on social networking sites, can you try again, maybe not using the entire name or something?  I can take it from there.

[pjwg]

Sorry.  When you get to the unnamed social networking site, just put Why Won't My Doctor Listen in the site's search bar.

[pjwg]

It is a social networking site, one word, doesn't start with a G or a T or an M.  At first I thought maybe it could be a place that people could vent (without using actual provider names to avoid libel), but then I realized that people may not want their profiles linked to their conditions and had to throw that idea out the window.  But what if it was a place you could share your wisdom about proper testing for thyroid levels or give advice on how best to present things to a doctor to convince him to authorize the right tests, qa gathering page to offer help for all kinds of conditions from people that actually know what they are talking about from personal experience, a page promoting self-advocacy, if that is a real word?  There are just so many frustrated people here that are being blown off by their doctors that it seems like there should be a way to make a little noise, maybe stand up and be heard about the way patients are being treated so badly, not necessarily medically (though maybe so) but emotionally, made to feel small, powerless, made to doubt themselves and wonder if they really are hypochondriacs or even crazy.  Please do check it out and see if it can be made into something useful.  I can set up a Notes section for every condition we can compile valid advice, info, links on if we can get over the hurdle of possibly not wanting identity out there.

[Barb135]

I'd like to have a look, also, if you can figure out how to get us there.

[gimel]

That link is evidently not allowed to be posted on the Forum.  I'd like to have a look.  Is there some other way you can get us to the right place?

[pjwg]

This may be kind of lame, but seeing on this forum that I am certainly not the only one feeling this kind of frustration, gathering from my own doctor's scoffing at the mention of forums that a lot of doctors don't take them seriously, I thought maybe there would be worth in trying out social networking.  Maybe we catch their attention this way; maybe not.  But at least it is a place to let our voices be heard, to know that *someone* is listening.

https://www.***.com/pages/Why-Wont-My-Doctor-Listen/269089646492349

[gimel]

There are some T4 meds that have some lactose in them.  What brand are you taking?