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  #1   ^
Old Thu, Mar-10-05, 10:10
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Posts: 45,300
 
Plan: Paleo 99.5%
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Default FAQ for Hypothyroid

This is meant to be a "quick reference" guide to hypothyroidism for people coming to this forum. There are many, many wonderful web sites that go into much greater detail than this does. This is really meant to prime-the-pump of knowledge you need to get satisfactory treatment but the links and resources below can definitely help get you started!

If you see any information that is wrong or out of date, please post a reply here and I will update. Also please post if you think there should be more information about something, and provide links if you can. I hope this can grow and become more useful as time goes on.

Natruska's web-site is definitely a great place to start your education. But you can get a quick overview of things here.

1) What are the symptoms?
2) My doctor says my thyroid is normal, but I have many symptoms of hypothyroid.
3) So if TSH isn't a good test, what is?
4) My Doctor won't do the FT tests and won't prescribe (enough) thyroid medication
5) Which type of thyroid med is best?
6) Ok, got the meds, got the doctor now what?
7) Get and Keep Your Medical Records!

1) What are the symptoms?

Gaining weight inappropriately or unable to lose weight, even cutting calories.
Low body temperature and I feel cold when I shouldn't be cold.
Fatigue and exhaustion.
Slow pulse.
Low blood pressure.
High cholesterol.
Losing hair, dry, coarse, brittle hair.
Rough scaly, dry, itchy skin.
Nails are brittle and break easily.
Husky, gravelly or hoarse voice.
Joint or muscle pains, aches, stiffness.
Carpal Tunnel Syndrome, arm or leg tendonitis or plantar fasciitis.
Irregular menstrual cycles (longer, heavier, more frequent)
Infertility, miscarriages.
Depression, restlessness, moodiness, sadness.
Memory problems.
Difficulty Concentrating.
Lack of libido.
Eyes feel gritty, dry, light-sensitive.
Lump in throat area. Difficult swallowing or pressure in neck.
Sleep Apnea
Swelling in the face, around the eyes, face and hands.
Eyebrows scanty, outer third maybe almost non-existant.
Sleeping a lot and still not feeling well-rested.


2) My doctor says my thyroid is normal, but I have many symptoms of hypothyroid.

Welcome to the current state of doctoring!

In the "good old days" before laboratory testing of blood for hormones, doctors used to go on symptoms of hypothyroidism and they'd dose you according to the symptoms you had. However they have now been taught that one blood test is the "Gold Standard" that reveals everything they need to know about your thyroid condition. Unfortunately this is simply not true.

The "TSH" test (Thyroid Stimulating Hormone) measures the amount of TSH being secreted by your pituitary gland. This hormone is used by the thyroid to decide how much thyroid hormone to produce. The folks that decided what range of TSH is normal tested a whole bunch of people and they decided that anything under 5.5 was "normal". However in reality most people on thyroid replacement hormones don't start to feel normal until their TSH is around 1, sometimes even less. Some people don't feel well until their TSH is under the bottom of the TSH range.

Within the last few years the range for TSH has been lowered and it looks like it might be lowered yet again. Unfortunately most doctors and labs don't know about the new range. You should print out the article referenced above and hand it to your doctor, chances are they're ignorant about it.

3) So if TSH isn't a good test, what is?

FT3 and FT4 (those stand for Free T3 and Free T4) are much better tests. The other thyroid tests are TT3 and TT4 (sometimes called other names) that measure the Total T3 and Total T4 in your blood. However, what it doesn't show is the amount of useable T3 (Free T3) or useable T4 (free T4). Just because you have lots of T3 in your blood does not mean your body can use it. Much of the thyroid hormones are bound to a "binding protein" and they just can't be used until they're split off that protein. There are conditions where TSH can look perfectly normal yet the usable amount of T3 or T4, or both, are under a desirable range. This is what doctors are missing. Other doctors are simply letting people get to the end of the (too large) TSH range and well above before they treat them. My own personal experience is I felt horrible with a TSH of 2.04.

You will need to get FT3 and FT4 done in order to truly diagnose your thyroid status. People get the other tests confused all the times, remember FT3 and FT4. Those are the two most important diagnostic tests.

NOTE: Your doctor will most likely not order these tests for you, you will have to ask for them. Be sure to check the lab slip! If your test does not include FT4 and FT3 you're just wasting precious blood. It might say: T4, free and T3, free or it might say FT3, FT4.

Women feel best in the upper third of the FT3 range while men feel best in about the middle of the FT3 range. (NOTE: Need to find a reference for this, I think I saw it on altsupportthyroid.org)

Ask your doctor to test your FT3 and FT4, not just your TSH and Totals.

4) My Doctor won't do the FT tests and won't prescribe (enough) thyroid medication

Welcome to the club! Doctors, even endocrinologists -- I should say, especially endocrinologists, the supposed experts -- have been taught that lowering TSH is very bad. As a result they have made the assumption that as long as you are anywhere in the range you're fine. So if you still have hypothyroid symptoms, then they're likely to believe it is due to something else. You might walk away with a prescription for anti-depressents because that's the sugar pill du jour.

They believe that lowering your TSH might potentially cause heart problems and osteoperosis. Granted, being hyperthyroid (i.e. the state of having too much thyroid hormone) is bad and can probably cause those things but they are going to the opposite extreme and not appropriately dosing replacement meds. This is defensive medicine at its worst.

To get beyond this roadblock you may have to spend your time and money to get properly diagnosed and treated. Fortunately in the day of the Internet it isn't nearly as hard as it once was. But the burden is on you to get the proper treatment. If you let the medical profession intimidate you or make all your decisions for you, then you probably won't get better.

First thing to do is get yourself informed. You will have to research this subject yourself. The web-sites I used the most were:

altsupporthyroid.org -- An ad-free place where you can read a ton of stuff from studies to patient experiences. This is my favorite spot.

www.thyroid-info.com -- This woman writes a ton about thyroid has a lot of books, lots of interviews and resources. However the site has a lot of ads for her books. One link here you should check out is "Top Thyroid Doctors".

Do the Blood Tests

Ok, now you've got a good idea of what might be going on with you. Next you need to get that FT3/FT4 blood test done. You can order your own blood tests on the Internet! There may be other places, but I went to www.healthcheckusa.com and ordered a Comprehensive Thyroid Panel II. Just make sure it says FT3 and FT4. I got the lab sheet in the mail in a few days and went down to a local lab to have it drawn. Before long, they emailed me the results and mailed them as well. You can take those to your doctor, if you haven't given up on him or her.

If you find your FT3 or FT4 is low normal or below range, you probably need to increase your meds or possibly need to take them different. You might also want to consider a different type of medication: Natural thyroid hormones. But to do this, you need a doctor that will cooperate with your treatment.

Working with Your Doctor or Finding a Better Doctor

First you might as well try your current doctor. Bring them the lab results. You've done your research, you can print out medical journal articles or abstracts that support your position, patient experiences from altsupporthyroid.org, the article about the new lab range for TSH. I would avoid things that smack of commericalism or sound too alternative medicine-y. For that reason, I wouldn't bring in books that a non-medical doctors had written, or research done by chiropractors or others either not in clinical practice or in a medical research field. There are some web-sites that doctors probably won't give much regard to, like Mercola. Not that I don't think there are some great contributions out there from non-doctors or alternative medicine places, but they're likely to invoke a negative response from your doctor.

If you find your doctor won't listen to you or won't change your treatment based upon your lab results you might just have to find a new doctor. Some of the techniques people have used include using the "Find a Doctor" from the www.armourthyroid.com site. But interview them or their nurse before you go in. Ask them questions like:

1) Would you treat a low normal thyroid patient that had symptoms and signs of hypothyroidism?

2) Do you use FT3/FT4 blood tests to identify thyroid issues or do you solely rely upon TSH?

3) Do you prescribe T3 or natural thyroid with T3 when FT3 is low?

4) What would be a typical doseage of natural thyroid? (They might not answer that).

If 1, 2 or 3 is "no" I would not bother going to that doctor.

If you don't want to screen a lot of doctors you can try one of the Top Thyroid doctors on Mary Sholman's site. But even if you do decide to go to one of these doctors, call them and interview them first. Just because they're on the list does not mean they will be good about treating your hypothyroidism.

5) Which type of thyroid med is best?

Most doctors will only prescribe synthetic T4. Why, you ask, when the active form of thyroid hormone is T3, do they prescribe T4? T4 is what you can think of as being the "battery" form thyroid hormone. The thyroid gland and liver are capable of changing T4 into T3 as needed. T4 on its own might not really do anything (I'm not sure about that) except circulate around in your blood stream until you need it.[/url] Then the T4 is converted to T3 and bingo, you've got fuel for your metabolism.

But some people don't convert enough T4 into T3. There are lots of known reasons for this, and probably some that aren't know. Some estimates are that 1/3 of all thyroid patients have this issue. So wouldn't it make sense to prescribe T3 in addition to T4 in someone with this problem? Well, I think so.

So what sort of T3? There are some out there that are synthetic, like Cytomel. Some doctors like to do a custom compound of T3 so that it releases slowly. The reason is that T3 is much quicker acting than T4 and some doctors believe that taking a T3 might make you hyperthyroid or at least the amount of T3 go way up every time you take a dose. But custom compounding is extremely expensive and there are no time released T3's on the market.

Finally there is Natural thyroid which is sold under a number of brand names like Armour, Westhyroid and Naturethyroid in the US. These are very old-fashioned and have been around for over 100 years, but that does not mean they aren't good! Lots of patients have switched from T4 only to natural thyroid and are much happier with their results.

Not only does natural thyroid contain T3 and T4 in the same percentages that your own body would make it (80% T4, 20% T3) but it contains T1 and T2 and calcitonin. Calcitonin is what your thyroid gland, if you have one, also makes and it helps you build bones. (Side note: As someone without a thyroid gland I wonder what the last 20 years without the benefit of calcitonin has done to my bones?)

There is a lot of misinformation amongst the medical community about natural thyroid (aka dessicated thyroid) some of the common myths are that the doses are not consistently potent. This is untrue. Natural prescription thyroid hormone has to meet the same guidelines as synthetic thyroid for consistency. For more information, including guidelines on converting synthetic doses to natural, visit the FAQ at www.armourthyroid.com.

6) Ok, got the meds, got the doctor now what?

First of all, thyroid medication is persnickety stuff. There are all kinds of foods and supplements that interfere withe the absorbtion of thyroid hormones including:

Calcium
Iron
Soy
Broccoli and other cruciferous veggies and turnips

You should either either take your meds alone, without any other medication, on an empty stomach and don't eat for at least 1 hour

OR

You can take your meds sublingually. That way the medication is absorbed by the little capillaries in your mouth and doesn't have to go through the stomach. The way to do this is to stick your pill (you might need to crunch it once to make it dissolve reasonably quickly) between cheek and gum. It might take 30 minutes to dissolve, but you almost forget about it.

Armour is sweetened just a tiny bit so it isn't bad at all. Some are not, some don't dissolve well at all, for instance levoxyl just turns into a wet cottony lump of fibers. Some natural thyroids don't have any sweetener added and I hear they don't taste so good.

The veggies I mentioned should be cooked so that the chemicals that interfere with thyroid are neutralized. And soy is to be avoided.

There are many supplements that enhance thryoid function, help you sleep, help you use your thyroid hormones well and so on, but it is a little outside the scope of this FAQ to get into all that. I'm sure you'll discover much more for yourself as you learn more about the trials and tribulations of hypothyroid patients.

7) Get and Keep your Medical Records!

Be sure to get a copy of your lab results. Don't just accept a "normal" prognosis from your doctor, insist that you are sent or faxed a copy of all your blood tests. And you should keep this information in a file, or a 3-ring binder, at home and bring it to your doctor visits.

If your doctor refuses to give you test results you have a right to be upset and you should tell your doctor you are. This is against medical ethics practices and might even violate state or federal law.

Links and Last Words

We are fortunate to have the vast resources of the Internet and ability to communicate easily with other people experiencing the same thing. Make use of it!

More Useful References

Description of the various thyroid tests
Interpreting Thyroid Tests This is from a medical journal, something you might want to show your doctor.
What to avoid eating and some supplement information
If you like reading really technical stuff or if you want to find references that your doctor might respect, use scholar.google.com to search. It searches from Universities, respected periodicals and the sort of places that doctors go to, or would if they bothered to keep updated on information.

Last edited by Nancy LC : Thu, Mar-10-05 at 11:41.
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  #2   ^
Old Thu, Mar-10-05, 13:49
Natrushka Natrushka is offline
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Quote:
Originally Posted by Nancy LC
You will need to get FT3 and FT4 done in order to truly diagnose your thyroid status. People get the other tests confused all the times, remember FT3 and FT4. Those are the two most important diagnostic tests.

NOTE: Your doctor will most likely not order these tests for you, you will have to ask for them. Be sure to check the lab slip! If your test does not include FT4 and FT3 you're just wasting precious blood. It might say: T4, free and T3, free or it might say FT3, FT4.

Women feel best in the upper third of the FT3 range while men feel best in about the middle of the FT3 range. (NOTE: Need to find a reference for this, I think I saw it on altsupportthyroid.org)


You can find reference in this post on keeping Ft4 in the upper 3rd of the range and keeping TSH below 2.0

http://forum.lowcarber.org/showpost...457&postcount=2
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  #3   ^
Old Thu, Mar-10-05, 13:54
Natrushka Natrushka is offline
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Posts: 11,512
 
Plan: IF +LC
Stats: 287/165/165 Female 66"
BF:
Progress: 100%
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Quote:
Most doctors will only prescribe synthetic T4. Why, you ask, when the active form of thyroid hormone is T3, do they prescribe T4? T4 is what you can think of as being the "battery" form thyroid hormone. The thyroid gland and liver are capable of changing T4 into T3 as needed. T4 on its own might not really do anything (I'm not sure about that) except circulate around in your blood stream until you need it.[/url] Then the T4 is converted to T3 and bingo, you've got fuel for your metabolism.


There are some errors in here, Nancy. The thyroid produces T3, it does not turn T4 into T3. That happens in the liver, yes, and peripherally - in other tissue. The most important place it happens is in the brain. Which is why the statement in red is off; T3 cannot cross the blood brain barrier, you need T4 in the cerebellum and cerebral cortext to convert into T3. Some folks to very well on only T4, but they are in the minority. Just as only T3 treatment is not optimal, neither is T4. You need both, or the thyroid wouln't bother making both.
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  #4   ^
Old Thu, Mar-10-05, 14:00
Natrushka Natrushka is offline
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Plan: IF +LC
Stats: 287/165/165 Female 66"
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Quote:
2) Do you use FT3/FT4 blood tests to identify thyroid issues or do you solely rely upon TSH?

3) Do you prescribe T3 or natural thyroid with T3 when FT3 is low?

4) What would be a typical doseage of natural thyroid? (They might not answer that).


I would reword 2) to say, Do you rely on TSH for dosing or do you use FT3/FT4 along with symptoms?

I would just ask for 3) if they ever prescribe T3 containing meds - don't qualify it, because sometimes it's just best to have some T3, levels notwithstanding.

4) Cannot be answered - it's a question of individual need, although if you get an answer like "No one ever gets more than 2 grains" you know not to go there.
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  #5   ^
Old Thu, Mar-10-05, 14:08
Natrushka Natrushka is offline
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Plan: IF +LC
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I would include the full list of foods to look out for and to avoid and the list of supplements to use. You can take them from my site if you like. They are important for those of us who still have a thyroid.

Again, I would differentiate between a symptom (I feel cold) and a sign (low body temp). Two lists; one of symptoms one of signs and explain that doctors like things they can measure.

Some symptoms:
Fatigue, feeling cold, palpitations, loud beating heart

Some signs:
low body temp, fast or slow hear rate, skipped heart beat, hair loss, weight gain, high cholesterol, edema, etc.

I would also mention that once treatment starts TSH is meaningless - drum it into their heads, Nancy - They often don't get it. Never ever let a doctor medicate you based on your TSH.

HTH
Nat
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  #6   ^
Old Thu, Mar-10-05, 14:38
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Plan: Paleo 99.5%
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Thanks Nat, I'll incorporate your ideas soon as I have some time!
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  #7   ^
Old Fri, Mar-11-05, 14:16
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Posts: 45,300
 
Plan: Paleo 99.5%
Stats: 210/170/160 Female 67.5"
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Uh oh... I can't edit the faq any longer. Must be a time-limit on how long you can edit it.
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  #8   ^
Old Fri, Mar-11-05, 16:41
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Posts: 45,300
 
Plan: Paleo 99.5%
Stats: 210/170/160 Female 67.5"
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Here's an interesting site, and a good quote:

http://www.thyroidmanager.org/index.html

Regarding Hashimoto's
Quote:
The dosage of thyroxine should normally be that required to bring the serum TSH level to the low normal range, such as .3 - 1 uU/ml. This is typically achieved with 1 ug L-T4/lb body weight/day, ranges from 75 - 125 ug/day in women, and 125 - 200 ug/day in men
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  #9   ^
Old Mon, Mar-21-05, 09:21
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Posts: 45,300
 
Plan: Paleo 99.5%
Stats: 210/170/160 Female 67.5"
BF:
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Location: San Diego, CA
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Just a quick update:

There is a doctor that believes you should swallow T3 containing Thyroid meds. I'm trying this now and I think it is really helping me.

Last edited by Nancy LC : Mon, Mar-21-05 at 10:56.
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  #10   ^
Old Mon, Mar-21-05, 09:59
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fridayeyes fridayeyes is offline
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Nancy - just to be clear, he didn't specify WITH food. He said to swallow it. Sorry if I made it sound otherwise.

Cheers,

Friday
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  #11   ^
Old Mon, Mar-21-05, 10:55
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Posts: 45,300
 
Plan: Paleo 99.5%
Stats: 210/170/160 Female 67.5"
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Oops! Sure enough, you did say that.
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  #12   ^
Old Thu, Mar-24-05, 19:16
MARIA1976 MARIA1976 is offline
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Plan: MODIFIED ATKINS
Stats: 225/150/130 Female 65 INCHES
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Default New To This Forum

I'd like to begin by introducing myself, hi everyone, my name is Maria
I had just about given up on doctors and ever feeling like myself again when I thought I would google the thread: incorrect thyroid results and I found this site. I'm sure glad that I did because I have a little more hope once again. My problem began almost 2 years ago when I began suffering from severe constipation despite no change in my diet. My doc gave me some powder and sent me on my way. When that stopped working, he sent me to a gastroenterologist, who despite the fact that I didn't have any symptoms beside the constipation, told me that I had ibs, gave me zelnorm and sent me on my way, ( all this without performing any tests). I know, I was batting a 1000! I didn't know the symptoms of thyroid until reading an article and when I asked my doc, he performed a T-3 exam and told me that the results were "normal", the most dreaded words that I have had to deal with for the past year. I pushed on and went to an endocrinologist and she asked me about my symptoms which included-an over 25 pound weight gain in less than 6 months, even though I have always followed a low calorie, moderate car diet while doing cardio and weight training 4-5 days a week, always feeling cold, lethargic, depressed (who wouldn't be at this point?), loss of muscle tone in my calves, menstruating only 5 times in 3 years, always fatigued no matter how much rest I got. I know my body was out of whack and the doc told me that based on my symptoms that I was "highly symptomatic". This gave me hope, that I would finally get the help that I sought, but once again I was thwarted by the term "normal".
My test results came back as follows:
T3- 30.2 from a 25.0-39.3 range
T4- 9.7 from a 4.5-12.0 range
T7- 2.9 from a 1.0-4.5 range
TSH- 3.51 from a 0.40-4.5 range
She didn't even mention T3 or T4 free tests, and when I mentioned to her that I had read that the throid test result numbers had been lowered, she told me that I sshe knew about that but she couldn't justify putting me on meds. I just about broke down crying in frustration and that's why I had nearly given up hope. To add insult to injury, because of the fact that I used to be 225 pounds and had lost 100 pounds and kept it off for 4 years, she told me that my weight gain could be my body going back to it's ideal weight and that I'd probably wouldn't lose the weight I'd gained. She also tole me that perhaps I had an image problem, that I was a lovely young woman who guys would love to day!!!! I had never been so friggin angry in my life and it took all slf control to leave her office without throwing something. I have visited the site listing the top thyroid docs in my state of N.Y, and have found one, Dr. Stella Ilyayeva, and even though I'm afraid to go through all this drama again, I feel that if I don't get some answers soon I'll lose my mind. Anyone out there have any suggestions, as any help,and or advice would be greatly appreciated. Thanks for your patience.
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  #13   ^
Old Thu, Mar-24-05, 19:52
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Posts: 45,300
 
Plan: Paleo 99.5%
Stats: 210/170/160 Female 67.5"
BF:
Progress: 80%
Location: San Diego, CA
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Wow, its just incredible how horrible doctors treat thyroid patients. If you want the best sort of thyroid doctor I would suggest you find one that will prescribe armour and will either go by your symptoms alone, or your FT3/FT4 symptoms.

If you have to drive a few hours to do it and pay out of your own pocket I encourage you to do so. I think you'll see how worth it is to have back your vitality and energy.

There are also some really top-notch doctors, like Wanda just mentioned Dr. Walinor, that will consult and prescribe for you over the phone. That guy really understands thyroid and the importance of T3.

There's absolutely not reason to give up hope. You just had to start looking for info on the internet and stop looking for it from your doctor! Now you can get it fixed.
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  #14   ^
Old Fri, Mar-25-05, 10:03
wcollier wcollier is offline
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Plan: Healthy eating/lifestyle
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Quote:


I have visited the site listing the top thyroid docs in my state of N.Y, and have found one, Dr. Stella Ilyayeva, and even though I'm afraid to go through all this drama again, I feel that if I don't get some answers soon I'll lose my mind.

Maria, I popped over and read that listing.
I went to several doctors, she was the only one who agreed a 4.3 TSH was too high for me even though the lab results say it was normal!. Listened to my symptoms too, not just the lab results! Very nice and understanding! Great Doctor!

I can't say it was overly detailed enough to tell you that Dr. Ilyayeva will fix your problems. I think you need to call their office and find out if she treats low normal FT3 and FT4, doesn't mind suppressed TSH and prescribes Armour.

With that info in hand, you'll get a better idea (and will save yourself a whole lotta time and money) if this doctor is for you. She may be great, but better safe than sorry at this stage of the game.

Good luck!
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Old Sat, Mar-26-05, 11:07
MARIA1976 MARIA1976 is offline
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Plan: MODIFIED ATKINS
Stats: 225/150/130 Female 65 INCHES
BF:
Progress: 79%
Location: BORN AND RAISED IN N.Y
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Thanks for all the advice and kind words!! I agree that I should speak to the doc first after so many missteps in the past, but one question, seeing as how I've never spoken to any of the docs (only receptionists) prior to my visits, do I just ask to speak to Dr. Ilyayeva even tho I'm not yet a patient of hers? I hope I don't sound too naive here,
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