Re: Re: Hi - New to the group and to Hashi's

[Guest guest]

hey susan - i just have to disagree sortof with one statement but thats OK to do - right - we can agree to disagree on things right? anyway - your statement about

<<Endos are not necessarily better than internists... but generally doctors are doctors, it's not at all easy to find a good one for treating this>>

i'm not in agreement that endo's aren't necessarily better than internists - you did say "necessarily" which isn't positively (LOL) but it still relays to the person there isn't a difference and there is - i hate to throw in here that i'm a RN b/c i hate for that to imply that i know more than others b/c i don't on most things but do on others and i can tell you the additional training they go through for a specialty certainly makes a difference. not to menttion ALL day long they treat the same problem - you have to get better at it unless you are completely ignorant - and there are some out there like that but not the majority. step out of the endo system for a second and jump into obgyn - all dr's have been trained about delivering babies but would you go to a GP to have your baby delivered if he did maybe 10 a year by accident or to a specialist that knows how to deal with all the complications day in day out and actually do it and deelivers probably 10 before the week is halfway through ? put that to any profession - what about an ortho - would you want a GP doing surgery to internally fixate a broken bone? true it might be harder to find a good one that agrees with your way of thinking or has good bedside manner etc but doctors are not just doctors - there are good ones. its just unffortunate that the specialist a fewer therefore harder to find but there is a reason for that.....and just b/c they don't always agree with us doesn't mean they are wrong - its just how they were trained. my endo wouldn't give me armour and explained why and being in the medical profession myself i couldn't argue with her - i'm not sure if i were in her shoes if i wouldn't have done the same thing - armour is not approved by the endocrinology society as a group and she is standing with them - i've had dr's who would give me anything i asked for but i didn't have faith in them - i could tell they didn't know what they were talking about - i even started playing games with this one dr and asking for things i KNEW i shouldn't have and he gave them to me --- needless to say i don't go there anymore - then i have a obgyn who knows her S*** but doesn't have what i consider a great bedside manner - but she saved both my children - and thats why i go to her - because she can - when it comes down to it i'm not there to hold a conversation or have them tell me what i want to hear or give me whatever i want - i'm going there for their knowledge and experience that i ddon't have to help me with a problem. as a RN i always recommend a specialist and then recommend asking ppl who they go to - then start your search from there.

sorry if i'm coming on strong - i'm usually not very verbal but i guess b/c i work in the field and believe me you learn a lot being on the other side and it really isn't all bad - in fact most of it is good.

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-- Re: Hi - New to the group and to Hashi's

Hi there, Marina and welcome again! Glad you jumped right in. No apologies for long messages necessary, we are a talkativegroup here usually.As far as diabetes connection and alopecia areata (I had to lookthat one up) -- yep, very likely all that and the Hashis are connected because autoimmune diseases like to pair up. Knockon wood I only have the Hashi's right now but lots of other members deal with pre-diabetes, RA, and other autoimmunestuff. Congrats on getting the diabetes thing under control though,yeah!Your antibodies are high but not unusual for someone with Hashi's. And no I'm afraid there is nothing we can do to halt the growthof those antibody suckers, not according to Western medicineanyway. All those symptoms you list are typical, how long have you been treating now? Endos are not necessarily better than internists... but generally doctors are doctors, it's not at all easy to find a good one for treating this, although if you're lucky you may not need to struggle depending on how your body does with the current options for hormone replacement. For me the best thing I've done was keeping up on lists like these.. we learn alot from each others' shared experiences. Keep us posted!~ *Note: Information is freely exchanged on this board based on patient experiences, and should not be considered a medical recommendation.

[Guest guest]

No wait and see approach when you have the antibodies because what's going

on here is that you not only have these antibodies, but your thyroid hormone

is either on it's way to bottoming out, or it's in a low swing of Hashi's

right now. Most people say that they actually feel better somewhere in the

very upper range (if there truly IS a " normal " range; I have my doubts) for

both T4 and T3 Frees. When your T4 drops off, your pituitary ordinarily

starts getting signals to increase, and this is part of how the

autoantibodies do their dirty work. I am not a doctor (just a bedraggled

thyroid patient who has come a long long way in treatment, compared to one

yr ago), but I am a firm believer in aggressively going after this

situation by suppressing the TSH downward to below a 1. Some people don't

agree with taking the TSH that low, but the truth is that the TSH is NOT a

hormone made by the thyroid, but is rather the pituitary hormone that

stimulates the thyroid to MAKE thyroid hormone. It is more important to

know what the readings will be on your Free T4 and Free T3 because they

actually represent the unbound hormone that is ready and available for the

body to use, and they represent the hypo, normal, or hyper state of the

body. The Totals testing is useless because it is the bound up hormone that

will not be used plus the Free hormone. Better to go straight to the source

and run the Frees. What your body cell receptors DO with the hormone to

accept it into the cells after that is what determines the way you FEEL. I

have seen people whose TSHs have been knocked down to a 0.03, and they still

do not have enough thyroid hormone available for their cells to use, mainly

because their bodies either can't convert T4 to T3 properly, or all the way,

or they have a lot of Reverse T3 because their cells have become/are

resistant to the entrance of the hormone into the cells. In other cases,

the pituitary has a problem with the production of the TSH, PLUS the thyroid

has a problem producing the hormone, or can't because there's something more

wrong with the pituitary than there is the thyroid. One or both. This is

what makes diagnosing thyroid disease with ONLY the TSH and then following

treatment using the TSH----makes this so dangerous to a person. They can't

get proper treatment because the TSH-only protocol is being used, or that

with only a T4 Total, and T3 Total. Another truth is that once thyroid

treatment has started, treating by the TSH MUST be out the window because

that feedback system has still been distorted by a sick thyroid and probably

a sick Hypothalamic-Adrenal Axis, AND the body has become so ill and

undernourished with no hormone available (or a low amt constantly), that now

the cells peripherally have become very resistant. (This is my opinion only

right here, that many of us need BOTH T4 and T3, especially in these cases).

It is MUCH more complicated than most doctors would have their thyroid

patients to believe. It only becomes overwhelming when a person doesn't

have the appropriate understanding of the disease by his/her doctor, and

also doesn't have the type of support like this group and others give.

There's nothing like having been there! ly, I think we're much more

" specialized " because it's our disease, so we know more about it than most

doctors do. I won't poo poo a good thyroid doctor, but they have to have a

very special interest in the thyroid, so that they have a greater desire to

dig deeper into this, or they are thyroid patients themselves and already

can " feel our pain " .

Re: Hi - New to the group and to Hashi's

> Thanks, and Suuzin for your replies.

> My first doc didn't test for T3, so I'll make sure to get that one

> ordered from my new doctor when I meet him next week.

>

> I am not currently on any medication (first doc thought I didn't

> need treatment), but I've gathered from others' experiences that I

> probably should be? Without knowing the T3 levels, it might be hard

> to judge... but do you think I should be adament about getting a

> prescription? Or should I be satisfied with a " wait and see "

> approach if that's what the new doc recommends as well? Of course I

> want my symptoms to go away but I also don't want to medicate

> unnecessarily.

>

> -Marina

[Guest guest]

sherry, perhaps we're all jaded on this list. personally, it

took about 4 years and no lie--about 10 different doctors--

before someone took me seriously and gave me a diagnosis.

after hearing everyone's stories, i realize 4 years isn't so

bad when compared.

i would say you're in the lucky minority. count your

blessings.

-hillary

---- Original message ----

>Date: Tue, 27 Jul 2004 17:33:25 -0000

>

>Subject: Re: Hi - New to the group and to

Hashi's

>To: Thyroiditis

>

>Hi and ,

>

>I just have to jump in on this one, I usually lurk more than

>pariticpate so avoid duplication. But these post struck a

chord with

>me. I have seen repeated posts slamming endos, and I have

>experienced just the oppositie. The nurse practitioner,

ob/gyn/

>thearpist, pediatrician who noticed abnormal bruising at my

daughters

>vist and said I should be seen, and my primary care doc all

missed

>the problem. Even the Pcp after knowing I had a problem was

behind

>on the test values and presence of antibodies and refused to

refer

>me. It was an endo that finally solved the mystery and

helped. And

>he does not go by the " numbers " but is an old timer. Maybe

age is

>what makes the difference.

>

>Oh, that pcp would also give me whatever I asked for except

more

>thyroid medicine. I claimed I kept him so I wouldn't lose

my

>prescribing power. But that was worthless because I can't

research

>everything.

>

>-- In Thyroiditis , " suuzin " <suuzin@y...>

wrote:

>> Hi, ! Of course we can disagree, it's a good

discussion to

>have!

>>

>> , you'll find a lot of people on here who think endos

are the

>most

>> " by the numbers " docs of all and therefore don't have

anything

>> additional to contribute to the *typical* thyroid case

(not

>something

>> unusual like HE). They look at the labs and tell you where

you

>should

>> be on your meds. One of the better ones examined my

thyroid with his

>> hands and was able to tell me when I had a nodule. But

that's about

>it.

>> Most endos are more interested in treating diabetes...

this is what

>> Shomon says (thyroid-info.com) and I tend to believe

it, having

>> seen my share of plenty.

>>

>> The thing is, ... I say docs are docs only because

the

>research on

>> thyroid treatment simply isn't there. Many of us here are

>frustrated

>> because again, most docs just look at the labs and tell us

we're

>fine

>> rather than listening to us tell them genuinely about our

symptoms.

>It's

>> pretty easy to look at labs and adjust one's dosage

accordingly --

>I can

>> (and do) do that myself, no MD, specialist or otherwise,

necessary!

>>

>> One thing I know for sure -- thyroid patients need more

options.

>The

>> current popular hormone replacement protocols ain't

cutting it. And

>docs

>> have to help us push for that... we can't do it alone. But

most

>refuse to

>> hear us.

>>

>> Anyway, we definitely do appreciate your perspective,

. Please

>> don't forget that little " Wrap message text " checkbox

below your

>text

>> window... your messages are still appearing on top of the

ads.

>Thanks!

>>

>> ~

>>

>>

>> > hey susan - i just have to disagree sortof with one

statement but

>thats OK

>> > to do - right - we can agree to disagree on things

right? anyway -

> your

>> > statement about

>> >

>> > <<Endos are not necessarily better than internists...

>> > but generally doctors are doctors, it's not at all easy

to find a

>good

>> > one for treating this>>

>> >

>> > i'm not in agreement that endo's aren't necessarily

better than

>internists -

>> > you did say " necessarily " which isn't positively (LOL)

but it

>still relays

>> > to the person there isn't a difference and there is - i

hate to

>throw in

>> > here that i'm a RN b/c i hate for that to imply that i

know more

>than others

>> > b/c i don't on most things but do on others and i can

tell you the

>> > additional training they go through for a specialty

certainly

>makes a

>> > difference. not to menttion ALL day long they treat the

same

>problem - you

>> > have to get better at it unless you are completely

ignorant - and

>there are

>> > some out there like that but not the majority. step out

of the

>endo system

>> > for a second and jump into obgyn - all dr's have been

trained

>about

>> > delivering babies but would you go to a GP to have your

baby

>delivered if he

>> > did maybe 10 a year by accident or to a specialist that

knows how

>to deal

>> > with all the complications day in day out and actually

do it and

>deelivers

>> > probably 10 before the week is halfway through ? put

that to any

>profession

>> > - what about an ortho - would you want a GP doing

surgery to

>internally

>> > fixate a broken bone? true it might be harder to find a

good one

>that agrees

>> > with your way of thinking or has good bedside manner etc

but

>doctors are not

>> > just doctors - there are good ones. its just

unffortunate that the

>> > specialist a fewer therefore harder to find but there is

a reason

>for that..

>> > ..and just b/c they don't always agree with us doesn't

mean they

>are wrong -

>> > its just how they were trained. my endo wouldn't give me

armour

>and

>> > explained why and being in the medical profession myself

i

>couldn't argue

>> > with her - i'm not sure if i were in her shoes if i

wouldn't have

>done the

>> > same thing - armour is not approved by the endocrinology

society

>as a group

>> > and she is standing with them - i've had dr's who would

give me

>anything i

>> > asked for but i didn't have faith in them - i could tell

they

>didn't know

>> > what they were talking about - i even started playing

games with

>this one dr

>> > and asking for things i KNEW i shouldn't have and he

gave them to

>me ---

>> > needless to say i don't go there anymore - then i have a

obgyn

>who knows her

>> > S*** but doesn't have what i consider a great bedside

manner -

>but she saved

>> > both my children - and thats why i go to her - because

she can -

>when it

>> > comes down to it i'm not there to hold a conversation or

have

>them tell me

>> > what i want to hear or give me whatever i want - i'm

going there

>for their

>> > knowledge and experience that i ddon't have to help me

with a

>problem. as a

>> > RN i always recommend a specialist and then recommend

asking ppl

>who they

>> > go to - then start your search from there.

>> > sorry if i'm coming on strong - i'm usually not very

verbal but i

>guess b/c

>> > i work in the field and believe me you learn a lot being

on the

>other side

>> > and it really isn't all bad - in fact most of it is good.

>

>

>

>

[Guest guest]

Sherry, I don't think the posts slam endos as much as suggest that PCPs

etc. tend to be better. If you keep a tally on the groups, people who

see internists, GPs, nurse practioners, naturopaths, DOs, etc. report

positive experiences most of the time. People who see endos report

negative experiences most of the time. That doesn't mean there are no

good endos or there are no bad DOs, but it does mean that it makes more

sense to try a non-endo first.

I've seen almost 40 endos and found 1 good one, one ok one, and the

other 30-something were terrible. I can't recommend that people see

endos first with a clear conscience, I am sorry but I just can't do that.

Jan

Sherry wrote:

>Hi and ,

>

>I just have to jump in on this one, I usually lurk more than

>pariticpate so avoid duplication. But these post struck a chord with

>me. I have seen repeated posts slamming endos, and I have

>experienced just the oppositie. The nurse practitioner, ob/gyn/

>thearpist, pediatrician who noticed abnormal bruising at my daughters

>vist and said I should be seen, and my primary care doc all missed

>the problem. Even the Pcp after knowing I had a problem was behind

>on the test values and presence of antibodies and refused to refer

>me. It was an endo that finally solved the mystery and helped. And

>he does not go by the " numbers " but is an old timer. Maybe age is

>what makes the difference.

>

>Oh, that pcp would also give me whatever I asked for except more

>thyroid medicine. I claimed I kept him so I wouldn't lose my

>prescribing power. But that was worthless because I can't research

>everything.

>

>

>