Re: When should I test my thyroid panel?

[Guest guest]

You should get a new doctor. Your current doctor is dangerous and is

violating the American Endocrinology Association guidelines, which say

that any TSH over 3.0 is hypothyroid. He is not updated with his own

association - not a good sign.

If you get a new doctor, then even if your TSH is lower at 3.1 you are

gonna be treated. If you get a Top Doc, they usually treat anything

above 1.0 if there are symptoms.

Jan

blithezb00tik wrote:

>I've got a referral from my doc to get my quarterly testing done,

>including parts of the thyroid panel (TSH + FT4). Now I just have to

>figure out when to do it, so as to get the highest possible TSH value.

>

>Just a quick refresher on my situation. I've got PCOS and type 2

>diabetes, both pretty well treated. My last TSH was 4.93 at a lab with

>a range of 0.35-5.5. The endo I went to said to come back with new

>test results in a few months, that I wasn't hypo but that he wanted to

>watch my thyroid. Meanwhile I've been adding unfermented soy products

>and some raw goitrogenic foods to my diet in order to increase my TSH.

>

>My question is, when is the best time to test, given that TSH values

>can change daily, bearing in mind that I'm on BCPs, metformin (850

>mg), simvastatin (20 mg) and folic acid (5 mg)? Should I not take some

>or all of my medications the night before the test in order to skew

>the results in my favor? Should I take the test before, during or

>after my period?

>

>Here are the options I came up with:

>

>1. Take test ASAP (tomorrow morning), since I felt especially bad

>yesterday, and am starting to feel bad today.

>2. Take tests ASAP and skip BCP pill the night before (3 more pills

>till the end of the pack).

>3. Take test after finishing BCP pills and before period.

>4. Take test during period?

>

>Which one would you guys choose?

>

>OK, I know all this sounds kind of crazy, but I feel like everything

>is riding on this TSH result, and I really want it to be the worst it

>can possibly be so I can get a diagnosis. I'm only 0.6 away from the

>top of the range.

>

>One more question. I usually feel my worst in the afternoon, but the

>clinic only takes blood in the early morning. Will that affect my test

>results? Is there something I could do to make myself feel worse in

>the morning, like get up earlier or get a bad night's sleep?

>

>Thanks much!

>

>blithe

>

>

[Guest guest]

I have 2 appointments lined up with 2 other docs after my upcoming

appointment with the current endocrinologist. I'm not sure my endo is

bound by the AEA guidelines, since I'm not in the US, I'm in Israel.

The endos and GPs here work within the framework of the state

subsidized health clinic where you see them. At my health clinic,

under the guidelines of the lab they use, hypo is over 5.5. I don't

know if the endo I'll be seeing is required to work within those

guidelines, or just doesn't know any better.

In any case, the search for a doc who knows how to handle thyroid

issues is going to be much more difficult. There is no listing in

Shomon's top doc list for any doctors in Israel. When I ask

secretaries at the doctor's office what TSH range their doctor uses

they have no idea what I'm talking about and/or don't care to find

out. When I ask people whether they recommend a particular doctor and

why, all they know is " he/she is good " because he/she gives them a

pill to take.

I may have to go to a doctor privately, rather than through my health

insurance, to get the treatment I need. But even if I do, I don't know

how I'll figure out which doctor to go to. They're all the same.

Doctors I've never heard of, that nobody I know has heard of, whose

secretaries can't give me any information as to their treatment style.

Not that there's such a huge selection. After thorough research on the

web, I think I found 5 in the country who claim to specialize in

thyroid disorders. Maybe one of them has an actual bedside manner.

I called a company that sells referrals to recommended doctors. They

couldn't even tell me what data their referrals are based on. " Oh, we

have a database of doctors " . Culled from where? Based on what

criteria? Patient input? Or possibly doctors recommending themselves

and their cronies?

So anyway... I'm aware that the endocrinologist I saw is an idiot. He

barely spoke to me or looked at me, and I was glad that he even

prescribed the little metformin that he did, because nobody else

would. But that's my situation and I just don't know what the hell

else to do . My next appointment is in September, so if this jerk

doesn't at least hand down a diagnosis, that's another month until I

see another potential jerk who may or may not hand down a diagnosis.

And then another month until I can see an osteopath who may or may not

diagnose something, and will charge me quite a lot for the privilege.

I'm sorry for going on, I'm just really *really* frustrated. This is

after fighting for proper treatment for my PCOS (which isn't quite

right yet), fighting for my diabetes diagnosis, fighting to get my

thyroid looked into at all, and finally switching GPs because the

previous one questioned the need to refer me to an endocrinologist on

a permanent basis altogether (not to mention declining to test me for

diabetes despite a family history until I repeatedly pestered her

about it, and then *intentionally* misdiagnosing me as glucose

intolerant). Oh, and after breaking down in my new GP's office, only

to hear her gently recommend an SSRI for depression.

For now, I'm just focusing on getting a diagnosis onto the computer.

If that means trying to force my TSH up, so be it. Once I have a

diagnosis, at least doctors will have less of a reason to indicate

that my symptoms are all in my head, or just depression.

blithe

> You should get a new doctor. Your current doctor is dangerous and is

> violating the American Endocrinology Association guidelines, which say

> that any TSH over 3.0 is hypothyroid. He is not updated with his own

> association - not a good sign.

>

> If you get a new doctor, then even if your TSH is lower at 3.1 you are

> gonna be treated. If you get a Top Doc, they usually treat anything

> above 1.0 if there are symptoms.

>

>

> Jan

[Guest guest]

why don't you just get a real DR? Gosh, there must be someone else, right

>

>Reply-To: The_Thyroid_Support_Group

>To: The_Thyroid_Support_Group

>Subject: When should I test my thyroid panel?

>Date: Mon, 19 Jul 2004 07:14:07 -0000

>

I've got a referral from my doc to get my quarterly testing done,

including parts of the thyroid panel (TSH + FT4). Now I just have to

figure out when to do it, so as to get the highest possible TSH value.

Just a quick refresher on my situation. I've got PCOS and type 2

diabetes, both pretty well treated. My last TSH was 4.93 at a lab with

a range of 0.35-5.5. The endo I went to said to come back with new

test results in a few months, that I wasn't hypo but that he wanted to

watch my thyroid. Meanwhile I've been adding unfermented soy products

and some raw goitrogenic foods to my diet in order to increase my TSH.

My question is, when is the best time to test, given that TSH values

can change daily, bearing in mind that I'm on BCPs, metformin (850

mg), simvastatin (20 mg) and folic acid (5 mg)? Should I not take some

or all of my medications the night before the test in order to skew

the results in my favor? Should I take the test before, during or

after my period?

Here are the options I came up with:

1. Take test ASAP (tomorrow morning), since I felt especially bad

yesterday, and am starting to feel bad today.

2. Take tests ASAP and skip BCP pill the night before (3 more pills

till the end of the pack).

3. Take test after finishing BCP pills and before period.

4. Take test during period?

Which one would you guys choose?

OK, I know all this sounds kind of crazy, but I feel like everything

is riding on this TSH result, and I really want it to be the worst it

can possibly be so I can get a diagnosis. I'm only 0.6 away from the

top of the range.

One more question. I usually feel my worst in the afternoon, but the

clinic only takes blood in the early morning. Will that affect my test

results? Is there something I could do to make myself feel worse in

the morning, like get up earlier or get a bad night's sleep?

Thanks much!

blithe

[Guest guest]

Well, even here the guidelines are just that, a guideline for the TSH level

and since it came out there have been articles saying that isn't a good

level. Maybe you could go to about.com and print out the article of the AACE

guidlines on TSH. It sounds like you may have to work with this guy a bit.

Youi are a complicated case and many DR's don't have the patience to work

with that. if you go to my Dr's site there are a bunch of articles that may

appeal to them. goodhormonehealth.com

>

>Reply-To: The_Thyroid_Support_Group

>To: The_Thyroid_Support_Group

>Subject: Re: When should I test my thyroid

>panel?

>Date: Mon, 19 Jul 2004 13:29:03 -0000

>

I have 2 appointments lined up with 2 other docs after my upcoming

appointment with the current endocrinologist. I'm not sure my endo is

bound by the AEA guidelines, since I'm not in the US, I'm in Israel.

The endos and GPs here work within the framework of the state

subsidized health clinic where you see them. At my health clinic,

under the guidelines of the lab they use, hypo is over 5.5. I don't

know if the endo I'll be seeing is required to work within those

guidelines, or just doesn't know any better.

In any case, the search for a doc who knows how to handle thyroid

issues is going to be much more difficult. There is no listing in

Shomon's top doc list for any doctors in Israel. When I ask

secretaries at the doctor's office what TSH range their doctor uses

they have no idea what I'm talking about and/or don't care to find

out. When I ask people whether they recommend a particular doctor and

why, all they know is " he/she is good " because he/she gives them a

pill to take.

I may have to go to a doctor privately, rather than through my health

insurance, to get the treatment I need. But even if I do, I don't know

how I'll figure out which doctor to go to. They're all the same.

Doctors I've never heard of, that nobody I know has heard of, whose

secretaries can't give me any information as to their treatment style.

Not that there's such a huge selection. After thorough research on the

web, I think I found 5 in the country who claim to specialize in

thyroid disorders. Maybe one of them has an actual bedside manner.

I called a company that sells referrals to recommended doctors. They

couldn't even tell me what data their referrals are based on. " Oh, we

have a database of doctors " . Culled from where? Based on what

criteria? Patient input? Or possibly doctors recommending themselves

and their cronies?

So anyway... I'm aware that the endocrinologist I saw is an idiot. He

barely spoke to me or looked at me, and I was glad that he even

prescribed the little metformin that he did, because nobody else

would. But that's my situation and I just don't know what the hell

else to do . My next appointment is in September, so if this jerk

doesn't at least hand down a diagnosis, that's another month until I

see another potential jerk who may or may not hand down a diagnosis.

And then another month until I can see an osteopath who may or may not

diagnose something, and will charge me quite a lot for the privilege.

I'm sorry for going on, I'm just really *really* frustrated. This is

after fighting for proper treatment for my PCOS (which isn't quite

right yet), fighting for my diabetes diagnosis, fighting to get my

thyroid looked into at all, and finally switching GPs because the

previous one questioned the need to refer me to an endocrinologist on

a permanent basis altogether (not to mention declining to test me for

diabetes despite a family history until I repeatedly pestered her

about it, and then *intentionally* misdiagnosing me as glucose

intolerant). Oh, and after breaking down in my new GP's office, only

to hear her gently recommend an SSRI for depression.

For now, I'm just focusing on getting a diagnosis onto the computer.

If that means trying to force my TSH up, so be it. Once I have a

diagnosis, at least doctors will have less of a reason to indicate

that my symptoms are all in my head, or just depression.

blithe

> You should get a new doctor. Your current doctor is dangerous and is

> violating the American Endocrinology Association guidelines, which say

> that any TSH over 3.0 is hypothyroid. He is not updated with his own

> association - not a good sign.

>

> If you get a new doctor, then even if your TSH is lower at 3.1 you are

> gonna be treated. If you get a Top Doc, they usually treat anything

> above 1.0 if there are symptoms.

>

>

> Jan

[Guest guest]

That would be a good idea.

I tried that the last time I saw him.

The paper I printed the articles on would be put to better use in the

toilet.

blithe

> Well, even here the guidelines are just that, a guideline for the

TSH level

> and since it came out there have been articles saying that isn't a good

> level. Maybe you could go to about.com and print out the article of

the AACE

> guidlines on TSH. It sounds like you may have to work with this guy

a bit.

> Youi are a complicated case and many DR's don't have the patience to

work

> with that. if you go to my Dr's site there are a bunch of articles

that may

> appeal to them. goodhormonehealth.com

[Guest guest]

Blithe,

I understand the difficulties of being abroad - there is only one doctor

listed in my country, 1,000 miles away, so it doesn't help much.

While the doctors abroad are not legally bound by the AEA guidelines,

they usually do keep updated with research - my endo had read the

guidelines and adopted them in her practice.

Are there holistic doctors where you live? They might be more updated

than endos.

I understand also the problem of combining all the diseases - I have

PCOS and diabetes too. My current endo is quite good with the thyroid

(well, for an endo - she believes in TSH suppression, but believes in

dosage changes only after 6 months), but she is terrible with the PCOS!

For now I am seeing my gyno for the PCOS, but I'd like to one day find a

doctor that was good with all the diseases.

Jan

blithezb00tik wrote:

>I have 2 appointments lined up with 2 other docs after my upcoming

>appointment with the current endocrinologist. I'm not sure my endo is

>bound by the AEA guidelines, since I'm not in the US, I'm in Israel.

>

>The endos and GPs here work within the framework of the state

>subsidized health clinic where you see them. At my health clinic,

>under the guidelines of the lab they use, hypo is over 5.5. I don't

>know if the endo I'll be seeing is required to work within those

>guidelines, or just doesn't know any better.

>

>In any case, the search for a doc who knows how to handle thyroid

>issues is going to be much more difficult. There is no listing in

>Shomon's top doc list for any doctors in Israel. When I ask

>secretaries at the doctor's office what TSH range their doctor uses

>they have no idea what I'm talking about and/or don't care to find

>out. When I ask people whether they recommend a particular doctor and

>why, all they know is " he/she is good " because he/she gives them a

>pill to take.

>

>I may have to go to a doctor privately, rather than through my health

>insurance, to get the treatment I need. But even if I do, I don't know

>how I'll figure out which doctor to go to. They're all the same.

>Doctors I've never heard of, that nobody I know has heard of, whose

>secretaries can't give me any information as to their treatment style.

>Not that there's such a huge selection. After thorough research on the

>web, I think I found 5 in the country who claim to specialize in

>thyroid disorders. Maybe one of them has an actual bedside manner.

>

>I called a company that sells referrals to recommended doctors. They

>couldn't even tell me what data their referrals are based on. " Oh, we

>have a database of doctors " . Culled from where? Based on what

>criteria? Patient input? Or possibly doctors recommending themselves

>and their cronies?

>

>So anyway... I'm aware that the endocrinologist I saw is an idiot. He

>barely spoke to me or looked at me, and I was glad that he even

>prescribed the little metformin that he did, because nobody else

>would. But that's my situation and I just don't know what the hell

>else to do . My next appointment is in September, so if this jerk

>doesn't at least hand down a diagnosis, that's another month until I

>see another potential jerk who may or may not hand down a diagnosis.

>And then another month until I can see an osteopath who may or may not

>diagnose something, and will charge me quite a lot for the privilege.

>

>I'm sorry for going on, I'm just really *really* frustrated. This is

>after fighting for proper treatment for my PCOS (which isn't quite

>right yet), fighting for my diabetes diagnosis, fighting to get my

>thyroid looked into at all, and finally switching GPs because the

>previous one questioned the need to refer me to an endocrinologist on

>a permanent basis altogether (not to mention declining to test me for

>diabetes despite a family history until I repeatedly pestered her

>about it, and then *intentionally* misdiagnosing me as glucose

>intolerant). Oh, and after breaking down in my new GP's office, only

>to hear her gently recommend an SSRI for depression.

>

>For now, I'm just focusing on getting a diagnosis onto the computer.

>If that means trying to force my TSH up, so be it. Once I have a

>diagnosis, at least doctors will have less of a reason to indicate

>that my symptoms are all in my head, or just depression.

>

>blithe

>

>

[Guest guest]

Hi,

What I would do is go to about.com and their thyroid section and find

the information on the new ranges for TSH. Than I would take that to

your Dr and say look according to these new ranges I am hypo. If your

Dr disagrees let them do their own research to find out that the

ranges were changed. There is no guarantee that eating soy etc will

cause a change in your TSH.

Louise

> I've got a referral from my doc to get my quarterly testing done,

> including parts of the thyroid panel (TSH + FT4). Now I just have to

> figure out when to do it, so as to get the highest possible TSH

value.

>

> Just a quick refresher on my situation. I've got PCOS and type 2

> diabetes, both pretty well treated. My last TSH was 4.93 at a lab

with

> a range of 0.35-5.5. The endo I went to said to come back with new

> test results in a few months, that I wasn't hypo but that he wanted

to

> watch my thyroid. Meanwhile I've been adding unfermented soy

products

> and some raw goitrogenic foods to my diet in order to increase my

TSH.

>

> My question is, when is the best time to test, given that TSH values

> can change daily, bearing in mind that I'm on BCPs, metformin (850

> mg), simvastatin (20 mg) and folic acid (5 mg)? Should I not take

some

> or all of my medications the night before the test in order to skew

> the results in my favor? Should I take the test before, during or

> after my period?

>

> Here are the options I came up with:

>

> 1. Take test ASAP (tomorrow morning), since I felt especially bad

> yesterday, and am starting to feel bad today.

> 2. Take tests ASAP and skip BCP pill the night before (3 more pills

> till the end of the pack).

> 3. Take test after finishing BCP pills and before period.

> 4. Take test during period?

>

> Which one would you guys choose?

>

> OK, I know all this sounds kind of crazy, but I feel like everything

> is riding on this TSH result, and I really want it to be the worst

it

> can possibly be so I can get a diagnosis. I'm only 0.6 away from the

> top of the range.

>

> One more question. I usually feel my worst in the afternoon, but the

> clinic only takes blood in the early morning. Will that affect my

test

> results? Is there something I could do to make myself feel worse in

> the morning, like get up earlier or get a bad night's sleep?

>

> Thanks much!

>

> blithe

[Guest guest]

Jan,

Whereabouts are you?

About treating everything at once, maybe separate docs for each

disease is the best route to take. Docs who specialize in all 3

conditions seem to be rare. Once I get the thyroid thing under

control, I'm going to go to a special PCOS clinic I heard about and

see about finding a good PCOS specialist there. It seems I'll need a

separate doc for each condition. But one thing at a time.

There are many alternative medicine practitioners here, of many

different schools of thought. I am cautious about that, and generally

prefer well-trained TCM (traditional Chinese medicine) practitioners

over any other type of alternative medicine practitioners. The

osteopath/naturopath I'll be seeing was trained for 8 years in the UK,

and is licensed both in the UK and here. So I feel confident that he's

a qualified practitioner. Whether he knows how to handle my problem

remains to be seen.

How is your gyn treating your PCOS? Are you tested periodically, i.e.

hormone bloodwork and internal ultrasound? My gyn tested me once, gave

me a couple of pills and sent me on my way . I was on Androcur until

the endo recommended that I stop taking it. Btw, if you're on

Androcur, recent studies have shown that it could cause depression and

anxiety. I felt the difference after I stopped taking it.

blithe

> Blithe,

>

> I understand the difficulties of being abroad - there is only one

doctor

> listed in my country, 1,000 miles away, so it doesn't help much.

>

> While the doctors abroad are not legally bound by the AEA guidelines,

> they usually do keep updated with research - my endo had read the

> guidelines and adopted them in her practice.

>

> Are there holistic doctors where you live? They might be more updated

> than endos.

>

> I understand also the problem of combining all the diseases - I have

> PCOS and diabetes too. My current endo is quite good with the thyroid

> (well, for an endo - she believes in TSH suppression, but believes in

> dosage changes only after 6 months), but she is terrible with the PCOS!

> For now I am seeing my gyno for the PCOS, but I'd like to one day

find a

> doctor that was good with all the diseases.

>

>

> Jan

[Guest guest]

Been there, done that.

Again, the paper it was printed on could have been put to better use

as wall paper. Or papier mache. Or for papering your parakeet's birdcage.

How can I illustrate the situation...

OK it's like I'm Alice, and I've fallen down the rabbit hole. I'm the

only one who looks at the list of symptoms and sees a rational

correlation between them, my lab results, and how I'm feeling.

Everyone else comes up with stories to explain the symptoms, while

ignoring the numbers.

Here's the gist of my conversation with the endo, aka the Mad Hatter:

" My cholesterol is high and keeps going up despite the statin, I feel

depressed and I'm tired all the time "

" OK "

" My TSH is higher than the AACE's recommended 0.3-3 range "

" Our lab's range is 5.5. You're within range "

" But I don't feel well "

" You're within range "

" Here's a list of symptoms from the AACE webpage. I've circled the

ones I have "

" That could be anything "

How do you argue with that?

blithe

> Hi,

> What I would do is go to about.com and their thyroid section and find

> the information on the new ranges for TSH. Than I would take that to

> your Dr and say look according to these new ranges I am hypo. If your

> Dr disagrees let them do their own research to find out that the

> ranges were changed. There is no guarantee that eating soy etc will

> cause a change in your TSH.

>

> Louise

[Guest guest]

High five, Blithe for not giving up.

Doctors can be such blasted jerks (see, I'm using my polite language!!!

hehehehe)

I posted this a day or two ago.. perhaps one of them, printed out and

handed to the doc may make a difference:

This may be something to print out or reference to docs that are

determined that ONLY TSH testing is required.

This one flat out states that Frees NEED to be tested and explains the

reason why!!!!

http://www.altsupportthyroid.org/t3/t3medrefs2.php

Here they go into the explanation and value of adding T3

http://www.altsupportthyroid.org/t3.php

And here they get into Desiccated thyroid (like Armour)

http://www.altsupportthyroid.org/dt.php

It still may not make a difference, but you never can tell.

Topper ()

On Mon, 19 Jul 2004 13:29:03 -0000 " blithezb00tik "

writes:

> I have 2 appointments lined up with 2 other docs after my upcoming

> appointment with the current endocrinologist. I'm not sure my endo

> is

> bound by the AEA guidelines, since I'm not in the US, I'm in

> Israel.

>

> The endos and GPs here work within the framework of the state

> subsidized health clinic where you see them. At my health clinic,

> under the guidelines of the lab they use, hypo is over 5.5. I don't

> know if the endo I'll be seeing is required to work within those

> guidelines, or just doesn't know any better.

>

> In any case, the search for a doc who knows how to handle thyroid

> issues is going to be much more difficult. There is no listing in

>

> Shomon's top doc list for any doctors in Israel. When I ask

> secretaries at the doctor's office what TSH range their doctor uses

> they have no idea what I'm talking about and/or don't care to find

> out. When I ask people whether they recommend a particular doctor

> and

> why, all they know is " he/she is good " because he/she gives them a

> pill to take.

>

> I may have to go to a doctor privately, rather than through my

> health

> insurance, to get the treatment I need. But even if I do, I don't

> know

> how I'll figure out which doctor to go to. They're all the same.

> Doctors I've never heard of, that nobody I know has heard of, whose

> secretaries can't give me any information as to their treatment

> style.

> Not that there's such a huge selection. After thorough research on

> the

> web, I think I found 5 in the country who claim to specialize in

> thyroid disorders. Maybe one of them has an actual bedside manner.

>

> I called a company that sells referrals to recommended doctors.

> They

> couldn't even tell me what data their referrals are based on. " Oh,

> we

> have a database of doctors " . Culled from where? Based on what

> criteria? Patient input? Or possibly doctors recommending themselves

> and their cronies?

>

> So anyway... I'm aware that the endocrinologist I saw is an idiot.

> He

> barely spoke to me or looked at me, and I was glad that he even

> prescribed the little metformin that he did, because nobody else

> would. But that's my situation and I just don't know what the hell

> else to do . My next appointment is in September, so if this jerk

> doesn't at least hand down a diagnosis, that's another month until

> I

> see another potential jerk who may or may not hand down a

> diagnosis.

> And then another month until I can see an osteopath who may or may

> not

> diagnose something, and will charge me quite a lot for the

> privilege.

>

> I'm sorry for going on, I'm just really *really* frustrated. This

> is

> after fighting for proper treatment for my PCOS (which isn't quite

> right yet), fighting for my diabetes diagnosis, fighting to get my

> thyroid looked into at all, and finally switching GPs because the

> previous one questioned the need to refer me to an endocrinologist

> on

> a permanent basis altogether (not to mention declining to test me

> for

> diabetes despite a family history until I repeatedly pestered her

> about it, and then *intentionally* misdiagnosing me as glucose

> intolerant). Oh, and after breaking down in my new GP's office,

> only

> to hear her gently recommend an SSRI for depression.

>

> For now, I'm just focusing on getting a diagnosis onto the

> computer.

> If that means trying to force my TSH up, so be it. Once I have a

> diagnosis, at least doctors will have less of a reason to indicate

> that my symptoms are all in my head, or just depression.

>

> blithe

[Guest guest]

For me... after what I went through with a egotistical dumb doc.. well,

actually more that one....

So, doc, I'm supposed to just deal with the symptoms because both you and

the lab are behind in current thyroid treatment protocols and refuse to

update yourselves so that you can treat your patients?

Since you are unable to treat my condition properly there is really no

reason for me to pay you to have wasted my time. I'll make sure that I

let others be aware of your weaknesses.

..... just a thought.. I HATE docs that torture their patients, us,

because their egos are more important to them then their patients.

Topper () *who's still unsure if it's ever worth going back to a doc

- doing better self-treating then I ever did with them!*

On Mon, 19 Jul 2004 14:40:09 -0000 " blithezb00tik "

writes:

> Been there, done that.

> Again, the paper it was printed on could have been put to better

> use

> as wall paper. Or papier mache. Or for papering your parakeet's

> birdcage.

>

> How can I illustrate the situation...

>

> OK it's like I'm Alice, and I've fallen down the rabbit hole. I'm

> the

> only one who looks at the list of symptoms and sees a rational

> correlation between them, my lab results, and how I'm feeling.

> Everyone else comes up with stories to explain the symptoms, while

> ignoring the numbers.

>

> Here's the gist of my conversation with the endo, aka the Mad

> Hatter:

>

> " My cholesterol is high and keeps going up despite the statin, I

> feel

> depressed and I'm tired all the time "

>

> " OK "

>

> " My TSH is higher than the AACE's recommended 0.3-3 range "

>

> " Our lab's range is 5.5. You're within range "

>

> " But I don't feel well "

>

> " You're within range "

>

> " Here's a list of symptoms from the AACE webpage. I've circled the

> ones I have "

>

> " That could be anything "

>

> How do you argue with that?

>

> blithe

[Guest guest]

yes, been to many like him. It is like the joke here for the commercial for

Burger King, " you get the son of a b#1tch " my way, or you don't get it at

all! " I am going to hear such crap on this, but, manipulate like with any

man applying to the ego, like her is what is wrong, I am so happy to be

seeing you because most DR's couldn't figure out a multi issue case, yadda,

yadda If that doesn't work, I guess new DR

>

>Reply-To: The_Thyroid_Support_Group

>To: The_Thyroid_Support_Group

>Subject: Re: When should I test my thyroid

>panel?

>Date: Mon, 19 Jul 2004 14:40:09 -0000

>

Been there, done that.

Again, the paper it was printed on could have been put to better use

as wall paper. Or papier mache. Or for papering your parakeet's birdcage.

How can I illustrate the situation...

OK it's like I'm Alice, and I've fallen down the rabbit hole. I'm the

only one who looks at the list of symptoms and sees a rational

correlation between them, my lab results, and how I'm feeling.

Everyone else comes up with stories to explain the symptoms, while

ignoring the numbers.

Here's the gist of my conversation with the endo, aka the Mad Hatter:

" My cholesterol is high and keeps going up despite the statin, I feel

depressed and I'm tired all the time "

" OK "

" My TSH is higher than the AACE's recommended 0.3-3 range "

" Our lab's range is 5.5. You're within range "

" But I don't feel well "

" You're within range "

" Here's a list of symptoms from the AACE webpage. I've circled the

ones I have "

" That could be anything "

How do you argue with that?

blithe

> Hi,

> What I would do is go to about.com and their thyroid section and find

> the information on the new ranges for TSH. Than I would take that to

> your Dr and say look according to these new ranges I am hypo. If your

> Dr disagrees let them do their own research to find out that the

> ranges were changed. There is no guarantee that eating soy etc will

> cause a change in your TSH.

>

> Louise

[Guest guest]

Blithe,

I am in Brazil.

I used to have a wonderful doctor - a GP and TCM specialist. He was the

one that first thought I had thyroid symptoms and palpated the thyroid

to find a goiter, before I had any other symptoms besides " difficulty

swallowing liquid " . But then I moved cities and couldn't get treatment

for 5 years, during this time I saw over 35 doctors who refused to treat.

My gyno is treating the PCOS with metformin. She understands I don't

wanna go on the pill. I am also taking (self-treating) prednisone for

adrenal fatigue, which is also used by alternative doctors for PCOS,

since they speculate adrenals are also involved. After taking it, my

testosterone lowered considerably, even before the metformin, so I am

sure at least in my case, it is helping too. I am getting the hormone

bloodwork every 3 months, but no ultrasounds as I actually have no

cysts, so there is no need to do them more than 2x a year. Some doctors

call this PCOS without cysts HAIR-AN Syndrome instead. HAIR-AN stands

for High Androgens, Insulin Resistance, Acanthosis Nigricans (the dark

brown discolorations on skin).

My endo doesn't wanna call it PCOS or HAIR-AN or anything: she calls it

fat, period. She is of the school of thought that no cysts, there is no

disease - PCOS or any other. My Free Testosterone was 11x higher than

the highest normal possible for a woman my age (Total was over 20x), but

she thinks that I am not producing extra testosterone in the ovaries or

adrenals, it is just the estrogen that reaches my body fat and is

converted into testosterone (periphereal conversion). So she told me to

stop taking the metformin the gyno put me on and put me on a diet pill

instead (Meridia). Well, my thyroid is not really balanced right now, so

the only thing Meridia made me lose was my money: I weigh exactly the

same as I did before, around 10lb over the HWR. She thinks if only I got

to 105lb, which is the lowest possible healthy weight for my height, I'd

be cured. Never mind I weighed more than that when I was 10 years old,

and that I wear a 4 at 120lb. Even if I could weigh that little, which I

don't think is possible, I'd look like a skeleton and wouldn't *want* to

weigh that. Now, this theory of hers is a piece of crap because:

a) even if my estrogen was being converted into testosterone in the fat,

to have that much more testosterone, there would still have to be an

ovarian problem of too much estrogen. I have normal estrogen and 11x

over normal testosterone, so regardless of whether this hormone first

came out as estrogen, it is still a problem!

I've been complaining of PCOS symptoms like the extra body hair since

I was 13, and getting ultrasounds and endoscopies since that age. When I

had my first ultrasound for this, I was anorexic and weighed 92lb. So it

is not the body fat I have now that is making me hairy. Also last year

when I was 120lb, I didn't get any less hairy than I am now at around 145lb.

c) The final thing that proves her wrong is that after 2 months on the

metformin and the prednisone, my Free Testosterone was 2x the high

normal value, as opposed to 11x - and I hadn't lost a pound. Ha! So much

for periphereal conversion.

In the time I was off metformin, my blood sugar finally rose to the

diabetic range, so now I am officially a diabetic too. But I've been on

a diabetic diet since I was born, so it is ok. I was born with an

autoimmune pancreas disorder that caused malabsorption, and doctors

speculated it damaged the pancreas and that I'be become a diabetic still

in childhood. I held out until I was 30, so it is ok.

I swear, even if I can only afford to see my old doctor once a year

cause I will have to fly to another city, it is worth it. Doctors in

general are so stupid, it is rare to find a decent one.

Jan

blithezb00tik wrote:

>Jan,

>

>Whereabouts are you?

>

>About treating everything at once, maybe separate docs for each

>disease is the best route to take. Docs who specialize in all 3

>conditions seem to be rare. Once I get the thyroid thing under

>control, I'm going to go to a special PCOS clinic I heard about and

>see about finding a good PCOS specialist there. It seems I'll need a

>separate doc for each condition. But one thing at a time.

>

>There are many alternative medicine practitioners here, of many

>different schools of thought. I am cautious about that, and generally

>prefer well-trained TCM (traditional Chinese medicine) practitioners

>over any other type of alternative medicine practitioners. The

>osteopath/naturopath I'll be seeing was trained for 8 years in the UK,

>and is licensed both in the UK and here. So I feel confident that he's

>a qualified practitioner. Whether he knows how to handle my problem

>remains to be seen.

>

>How is your gyn treating your PCOS? Are you tested periodically, i.e.

>hormone bloodwork and internal ultrasound? My gyn tested me once, gave

>me a couple of pills and sent me on my way . I was on Androcur until

>the endo recommended that I stop taking it. Btw, if you're on

>Androcur, recent studies have shown that it could cause depression and

>anxiety. I felt the difference after I stopped taking it.

>

>blithe

>

>

>

[Guest guest]

Same here, Topper - I will go to docs just to make my insurance pay for

testing, but the last time I actually heard one cause she sounded smart,

her idea of treatment didn't work (that was my last endo, " you are just

fat " doctor as I now call her).

I will only actually listen to a doctor again if I find a good holistic

doctor, like the one I had back home - or if I fly to see him. That is it.

Jan

topper2@... wrote:

>Topper () *who's still unsure if it's ever worth going back to a doc

>- doing better self-treating then I ever did with them!*

>

>

>

[Guest guest]

I would dearly love to find a doc that was truly a doctor, one who

listened to his patient and cared... but I've only seen two in my

lifetime... and one was tainted by Synthroid.... The first was a REALLY

old doc in a small clinic in a town near here. I don't remember when I

first saw him, but I went to him when I was 18 to go on birth control

pills.

I'd actually had the talk with my folks, even though I didnt' need to, to

get the answers that I needed to my questions. Then I made the

appointment and went in the see the doc. He did the pelvic and then sat

me down to talk. He had me in tears, accusing me of not being a virgin.

I'd not yet been with my boyfriend. I wanted to be 'safe' and was going

on the pill first. He just made all kinds of statements about me lying...

Finally, he explained what he was doing. I was paying out of my pocket

for everything, he knew that. By making absolutely sure that there was no

way I could be pregnant he was saving me the cost of the pregnancy test..

He was such a dear ole fart. He was just great. Yeah, it was sort mean

what he did, but he had to make sure. He'd known our family for a long

while, and was saving me the hassle and the price.

He was just great... he did just a few years later, the guy that took

over his practice was a total jerk.

The other was the endo that took care of me the first three years after

my RAI. She spent a lot of time talking with me, and used me as the

example for her students... but she still only prescribed Synthroid...

she told me the 'horror stories' about natural thyroid and the dangers of

the chemicals that are fed to the cattle and the inconsistency of the

meds. It wasn't until the last few years that I learned the stuff came

from pigs, not cows!

You can be sure that if we get this clinic dream to come to reality, the

interview process for the docs that will be working there will be

extensive!!!

We should be able to get the very best... there will be two to start,

specializing in thyroid and adrenal with a strong interest in Immune

disorders and supporting the entire body... each doc will work three days

on, three days off... available for appointments during the standard 8

hour day, and on call for consultation the other 8... No one has to work

on a Sunday.. so in effect the docs will have a four day weekend... in

return for that.. they have to be DARN GOOD at what we need and be there

without hesitation during their 'on duty' days for exams and

consultations.

every body chant.. or I need to win a big lottery so that we can

build this thing!

*sigh*

Topper ()

On Mon, 19 Jul 2004 15:51:49 -0300 Janaina Viggiano

writes:

> Same here, Topper - I will go to docs just to make my insurance pay

> for

> testing, but the last time I actually heard one cause she sounded

> smart,

> her idea of treatment didn't work (that was my last endo, " you are

> just

> fat " doctor as I now call her).

>

> I will only actually listen to a doctor again if I find a good

> holistic

> doctor, like the one I had back home - or if I fly to see him. That

> is it.

>

>

> Jan

>

> topper2@... wrote:

>

> >Topper () *who's still unsure if it's ever worth going back to

> a doc

> >- doing better self-treating then I ever did with them!*

> >

> >

> >

>

>

>

>

[Guest guest]

If worse comes to worse you can self medicate. Or tell your " Dr " that

you trust Shomon more than him and give him the link to the

about.com site.

> > Hi,

> > What I would do is go to about.com and their thyroid section and

find

> > the information on the new ranges for TSH. Than I would take that

to

> > your Dr and say look according to these new ranges I am hypo. If

your

> > Dr disagrees let them do their own research to find out that the

> > ranges were changed. There is no guarantee that eating soy etc

will

> > cause a change in your TSH.

> >

> > Louise

[Guest guest]

Thanks Topper .

Those were some cool links you sent. I put them in my favorites and

will print them out before the appointment. There are also some new

studies that came out recently, indicating a correlation between PCOS

and hypothyroidism. Maybe that will light a fire under his butt.

blithe

> High five, Blithe for not giving up.

>

> Doctors can be such blasted jerks (see, I'm using my polite language!!!

> hehehehe)

>

> I posted this a day or two ago.. perhaps one of them, printed out and

> handed to the doc may make a difference:

>

> This may be something to print out or reference to docs that are

> determined that ONLY TSH testing is required.

>

> This one flat out states that Frees NEED to be tested and explains the

> reason why!!!!

>

> http://www.altsupportthyroid.org/t3/t3medrefs2.php

>

> Here they go into the explanation and value of adding T3

>

> http://www.altsupportthyroid.org/t3.php

>

> And here they get into Desiccated thyroid (like Armour)

>

> http://www.altsupportthyroid.org/dt.php

>

> It still may not make a difference, but you never can tell.

>

> Topper ()

[Guest guest]

Good idea that, appealing to the ego.

I'll give it a go, but I'm usually too reticent to openly kiss the

doctor's 4ss .

Thanks!

blithe

> yes, been to many like him. It is like the joke here for the

commercial for

> Burger King, " you get the son of a b#1tch " my way, or you don't get

it at

> all! " I am going to hear such crap on this, but, manipulate like

with any

> man applying to the ego, like her is what is wrong, I am so happy to be

> seeing you because most DR's couldn't figure out a multi issue case,

yadda,

> yadda If that doesn't work, I guess new DR

[Guest guest]

Brazil! Cool place to be! Er, hot rather! Seriously, it sounds like

a really pleasant place to live. Where in Brazil are you? I've got a

distant cousin in Sao o.

So about your endo... how do you say dumb4ss in Portuguese? She's

like, muy stupida! Your testosterone levels are way high, you've got

the hirsute problem and difficulty losing weight, ergo PCOS! Let's say

it together now, Pee Cee Oh Es! Man... doctors!

Her theory is definitely a piece of crap. There are plenty of women

who suffer from PCOS, despite their being at optimal weight and

sometimes being underweight. When I was slightly underweight from ages

19-21 I *still* had the acne, extra hair, high cholesterol, etc. There

are also plenty of women with PCOS who haven't any cysts! In any case,

excess androgens in a woman can cause some serious problems and should

be treated. So her argument is totally pointless.

Anyway, I guess in a way the diabetes diagnosis is a help to you,

since that sort of " forces " your doc to give you the metformin that

you need. Btw, I hope she's giving you enough. I've read that the

optimal dosage for women with PCOS (not diabetes, mind you) is like

1500-2000 mg. I'm on 850 mg right now, and although it helps, I do

feel that I need more.

If you have high blood pressure, you may be able to convince your doc

to give you spironolactone, which should lower your BP and your

testosterone levels as well.

Anyway, I hope you find a proper doc and get all your conditions under

control.

blithe

Blithe,

I am in Brazil.

I used to have a wonderful doctor - a GP and TCM specialist. He was

the one that first thought I had thyroid symptoms and palpated the

thyroid to find a goiter, before I had any other symptoms besides

" difficulty swallowing liquid " . But then I moved cities and couldn't

get treatment for 5 years, during this time I saw over 35 doctors who

refused to treat.

[Guest guest]

The @$$0(E GP who tried to keep you was literally trying to keep your money,

without getting his pants sued off, and that's my opinion on that. That's

why he/she didn't want to refer! (((Sigh))) But I'm willing to bet that

the osteopath is going to be your best bet so far. Will be keeping fingers

and toes crossed (ouch!) for you, Blithe.

Re: When should I test my thyroid

panel?

> I have 2 appointments lined up with 2 other docs after my upcoming

> appointment with the current endocrinologist. I'm not sure my endo is

> bound by the AEA guidelines, since I'm not in the US, I'm in Israel.

>

> The endos and GPs here work within the framework of the state

> subsidized health clinic where you see them. At my health clinic,

> under the guidelines of the lab they use, hypo is over 5.5. I don't

> know if the endo I'll be seeing is required to work within those

> guidelines, or just doesn't know any better.

>

> In any case, the search for a doc who knows how to handle thyroid

> issues is going to be much more difficult. There is no listing in

> Shomon's top doc list for any doctors in Israel. When I ask

> secretaries at the doctor's office what TSH range their doctor uses

> they have no idea what I'm talking about and/or don't care to find

> out. When I ask people whether they recommend a particular doctor and

> why, all they know is " he/she is good " because he/she gives them a

> pill to take.

>

> I may have to go to a doctor privately, rather than through my health

> insurance, to get the treatment I need. But even if I do, I don't know

> how I'll figure out which doctor to go to. They're all the same.

> Doctors I've never heard of, that nobody I know has heard of, whose

> secretaries can't give me any information as to their treatment style.

> Not that there's such a huge selection. After thorough research on the

> web, I think I found 5 in the country who claim to specialize in

> thyroid disorders. Maybe one of them has an actual bedside manner.

>

> I called a company that sells referrals to recommended doctors. They

> couldn't even tell me what data their referrals are based on. " Oh, we

> have a database of doctors " . Culled from where? Based on what

> criteria? Patient input? Or possibly doctors recommending themselves

> and their cronies?

>

> So anyway... I'm aware that the endocrinologist I saw is an idiot. He

> barely spoke to me or looked at me, and I was glad that he even

> prescribed the little metformin that he did, because nobody else

> would. But that's my situation and I just don't know what the hell

> else to do . My next appointment is in September, so if this jerk

> doesn't at least hand down a diagnosis, that's another month until I

> see another potential jerk who may or may not hand down a diagnosis.

> And then another month until I can see an osteopath who may or may not

> diagnose something, and will charge me quite a lot for the privilege.

>

> I'm sorry for going on, I'm just really *really* frustrated. This is

> after fighting for proper treatment for my PCOS (which isn't quite

> right yet), fighting for my diabetes diagnosis, fighting to get my

> thyroid looked into at all, and finally switching GPs because the

> previous one questioned the need to refer me to an endocrinologist on

> a permanent basis altogether (not to mention declining to test me for

> diabetes despite a family history until I repeatedly pestered her

> about it, and then *intentionally* misdiagnosing me as glucose

> intolerant). Oh, and after breaking down in my new GP's office, only

> to hear her gently recommend an SSRI for depression.

>

> For now, I'm just focusing on getting a diagnosis onto the computer.

> If that means trying to force my TSH up, so be it. Once I have a

> diagnosis, at least doctors will have less of a reason to indicate

> that my symptoms are all in my head, or just depression.

>

> blithe

[Guest guest]

Isn't it amazing in the medical world now, Jamy? Why we have literally

MILLIONS of doctors out here now who are willing to prescribe a drug to men

and women, in order for them to have a better sex life, never mind the fact

that it drives the blood pressure straight up, may cause stroke, and even

makes them see in the color blue. Yet, they are unwilling to do a trial run

of thyroid hormone just to see if it might help. (It might make you have

osteoporosis, duhhhh.) Which shows you where most doctors' brains are, and

it ain't on top of their necks either, duhhh!!!

RE: Re: When should I test my thyroid

panel?

> yes, been to many like him. It is like the joke here for the commercial

for

> Burger King, " you get the son of a b#1tch " my way, or you don't get it at

> all! " I am going to hear such crap on this, but, manipulate like with any

> man applying to the ego, like her is what is wrong, I am so happy to be

> seeing you because most DR's couldn't figure out a multi issue case,

yadda,

> yadda If that doesn't work, I guess new DR

[Guest guest]

Well, doc, we have opposite problems, don't we? Mine's on my body, and

yours is on your head.

Re: Re: When should I test my thyroid

panel?

> Same here, Topper - I will go to docs just to make my insurance pay for

> testing, but the last time I actually heard one cause she sounded smart,

> her idea of treatment didn't work (that was my last endo, " you are just

> fat " doctor as I now call her).

>

> I will only actually listen to a doctor again if I find a good holistic

> doctor, like the one I had back home - or if I fly to see him. That is it.

>

>

> Jan

>

> topper2@... wrote:

>

> >Topper () *who's still unsure if it's ever worth going back to a doc

> >- doing better self-treating then I ever did with them!*

[Guest guest]

Thanks, !

Nah, my previous GP was also running the clinic I went to. So she may

have been skimping on me for that reason. But most of the docs I see

are free, since they're under my state-subsidized health coverage. So

money isn't really an issue for them, since I'm not the one who pays

them. But not prescribing costly drugs sometimes is.

I'm thinking the osteopath might be the best choice too. Since I'll be

paying him out of pocket, he may actually provide more thorough

medical care.

blithe

> The @$$0(E GP who tried to keep you was literally trying to keep

your money,

> without getting his pants sued off, and that's my opinion on that.

That's

> why he/she didn't want to refer! (((Sigh))) But I'm willing to bet

that

> the osteopath is going to be your best bet so far. Will be keeping

fingers

> and toes crossed (ouch!) for you, Blithe.

>

>

[Guest guest]

We do enjoy passing out the ammunition around here!!!

hehehehehe

Topper ()

On Tue, 20 Jul 2004 06:52:54 -0000 " blithezb00tik "

writes:

> Thanks Topper .

>

> Those were some cool links you sent. I put them in my favorites and

> will print them out before the appointment. There are also some new

> studies that came out recently, indicating a correlation between

> PCOS

> and hypothyroidism. Maybe that will light a fire under his butt.

>

> blithe

[Guest guest]

I live in Salvador, in the Northeast coast. I've lived pretty much

everywhere though and I love Sao o.

Dumb@ss would be estupido, haha. Or bundao (pronounced boon- down). She

is a dumbss (DOT) I'd accept this from older doctors, cause until like 15

years ago, they didn't really understand how the pancreas was involved

in PCOS and thought the cysts were a cause of problems, not a symptom.

But 15 years ago, my endo was in High School, so she has no excuse! She

should have learned it right already.

I've had the acne and excess body hair since I was 11 - being

complaining to doctors at least since that age. They checked my ovaries

in any and every possible way (vaginal endoscopy when you are a virgin -

not a pleasant experience. But on the bright side, it cured my fear of

wearing a tampon. LOL), but they never had me do a blood test for

testosterone!

I am taking 2x 850mgs a day. I tried 2x 1000mgs but got sick, so 1700mg

is probably enough for me right now. The advantage is that metformin is

OTC here, so now that I know I should take it, I no longer need doctors,

yay. At least my dumb@ss endo gave me something wonderful: a lifetime

prescription for compounded time-released T3. The lab that made Cytomel

here closed, so without the prescription I'd need to buy it in Mexico.

My blood pressure is really low (100-80), so it looks like I am not a

candidate for spironolactone. My gyno said I might try Avandia if only

the metformin is not enough, which I am not so psyched about it cause it

costs a ton, but it shows she is updated with the latest research.

The more I look for a doctor here and see the cost of a consultation

(around $300 for going outside my health insurance) the more I think I

am gonna fly home to see my old doctor instead. For $200 I can get a

return ticket and pay it in 10 installments. He is on my insurance, so I

wouldn't have to pay for the consultation. And I could stay at a

friend's, not to spend on hotel. I'm gonna do that in a couple of months.

Jan

blithezb00tik wrote:

>Brazil! Cool place to be! Er, hot rather! Seriously, it sounds like

>a really pleasant place to live. Where in Brazil are you? I've got a

>distant cousin in Sao o.

>

>So about your endo... how do you say dumb4ss in Portuguese? She's

>like, muy stupida! Your testosterone levels are way high, you've got

>the hirsute problem and difficulty losing weight, ergo PCOS! Let's say

>it together now, Pee Cee Oh Es! Man... doctors!

>

>Her theory is definitely a piece of crap. There are plenty of women

>who suffer from PCOS, despite their being at optimal weight and

>sometimes being underweight. When I was slightly underweight from ages

>19-21 I *still* had the acne, extra hair, high cholesterol, etc. There

>are also plenty of women with PCOS who haven't any cysts! In any case,

>excess androgens in a woman can cause some serious problems and should

>be treated. So her argument is totally pointless.

>

>Anyway, I guess in a way the diabetes diagnosis is a help to you,

>since that sort of " forces " your doc to give you the metformin that

>you need. Btw, I hope she's giving you enough. I've read that the

>optimal dosage for women with PCOS (not diabetes, mind you) is like

>1500-2000 mg. I'm on 850 mg right now, and although it helps, I do

>feel that I need more.

>

>If you have high blood pressure, you may be able to convince your doc

>to give you spironolactone, which should lower your BP and your

>testosterone levels as well.

>

>Anyway, I hope you find a proper doc and get all your conditions under

>control.

>

>blithe

>

>

>