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Sounds like your doctor is pretty good guy.. Looking after you and all..Be happy he is not just ignoring the whole thing.. Have a wonderful vacation Hon.. Enjoy the new Llama baby, teals etc..Take your time getting healthy.. Love ya Kathy Boo.

-- doctor

They have me scheduled at a larger hospital on May 3rd for a Pulmonary Function Test... oh joy. My ex-ray looks good but the combo of lungs still hurting, weakness, and still rattling under the stethoscope leads the doc to suspect possible early stage of emphazima (hope spell check catches that one, lol). Of course, he is the same sweet doc that had me go to the Cardio guy when my ticker was just fine. But, where there are still some problems we need to find out what is going on I guess. He also gave me a couple of samples of a different inhaler used one puff twice a day. This is not a mist but a powder that will coat the lungs... ok what ever?

Doc and I talked about going back to work. I said in a way I would like to but the germ bags scare the hell out of me. He agreed, feels it might be ok, but especially where I am still having trouble we decided the bus can do without me for the rest of the school year.

That's all for now, I am pooped!

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  • 4 months later...
  • 1 month later...

Hi Jody,

Long time no hear,, you are right, we havent heard from you in ages.....

You are so right, its very important to have the right doc for you,, one that

you can talk with, one that you trust, and one that keeps up on all the latest

info on hep..

Please let us know how you are doing and what the labs show!

hugs

jax

toyota1059 <jodybaine747@...> wrote:

HI everyone,you all do not hear much from me but i have been arond for

a while i have had to stop tx ....however my last blood test said i was

undetectable i only took tx,s for 14 weeks i now have a new doc he is

korean i want to tell everyone that FINDING THE RIGHT DOC IS VERY

IMPORTANT THEY SHOULD TALK TO YOU NOT JUST RUSH U IN AND OUT NEW DOC

TOOK BLOOD AGAIN FRIDAY WILL SEE WHERE I AM AT TOMORROW TAKE

CARE ....JODY

It's a pleasure having you join in our conversations. We hope you have found the

support you need with us.

If you are using email for your posts, for easy access to our group, just click

the link-- Hepatitis C/

Happy Posting

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Hi all,

I've read all of your posts, but Jody's post has intrigued me, so I was prompted

to write.

My husband was recently diagnosed with Hepatitis C. The family doctor referred

him to a gastroenterologist. When we went to see him, hubby came away from the

visit shaking his head and announced that he had no faith in the man. For

example, when hubby asked doctor how expensive the treatment was, the doctor

asked him if he could afford to buy a new car? Hubby replied that it depended

on what kind of car it was! This doctor poopood the remark and promptly ushered

us out of the office after giving hubby a requisition to have a liver biopsy

done. The doctor then told him that they could talk some more after the results

from the biopsy were announced. Since Jody wrote that finding the right doctor

was very important, how do you go about finding one that is very knowledgable

and caring. Hubby has tons of questions to ask a very patient doctor. So do

I!

Reading the posts have really helped me deal with the uncertainty of this

disease. We just celebrated our 25th. anniversary. Hubby seems to have caught

" the bug " about 28 years ago, and it has been dormant all these years!

in Indiana

---------------------------------

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Well HI !

and Happy Anniversary, wow, thats a long time to wake up to the same face! I

hope I will one day get to say that!!

IF the doc poo pooed anything your hubby had to say, then I would suggest you

look for another doc.. YOU need one that will sit down and address your

questions. What kind of doc would just answer your question with another

question? that stinks..

Where in Indiana are you? Are you close to a teaching university hospital?

They usually have the most up to date docs and tx...I know so many others who

have this,lemme see what I can find for ya...

let me know what big city you are close to,, ok?

thanks

jax

Ramey <catste888@...> wrote:

Hi all,

I've read all of your posts, but Jody's post has intrigued me, so I was prompted

to write.

My husband was recently diagnosed with Hepatitis C. The family doctor referred

him to a gastroenterologist. When we went to see him, hubby came away from the

visit shaking his head and announced that he had no faith in the man. For

example, when hubby asked doctor how expensive the treatment was, the doctor

asked him if he could afford to buy a new car? Hubby replied that it depended

on what kind of car it was! This doctor poopood the remark and promptly ushered

us out of the office after giving hubby a requisition to have a liver biopsy

done. The doctor then told him that they could talk some more after the results

from the biopsy were announced. Since Jody wrote that finding the right doctor

was very important, how do you go about finding one that is very knowledgable

and caring. Hubby has tons of questions to ask a very patient doctor. So do

I!

Reading the posts have really helped me deal with the uncertainty of this

disease. We just celebrated our 25th. anniversary. Hubby seems to have caught

" the bug " about 28 years ago, and it has been dormant all these years!

in Indiana

---------------------------------

Music Unlimited - Access over 1 million songs. Try it free.

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Ask the nurses ....they know the doctors.

The treatment is very expensive but insurance covers it.....Medicaid

does too. If you don't have insurance, both of the drug companies

that make the meds used for treatment have programs that will provide

the meds for free.

The reason the doctor didn't want to discuss treatment is because he

doesn't know if your husband will really need it. If the liver

biopsy finds that there is no liver damage and hubby has had hep C

for 28 years, then he can choose not to treat. If however he has

cirrhosis then the risk of decompensation (when the liver no longer

works)is high and he may want to treat.

.....Hepatitis C is not really dormant.....it's chronic...and it

usually takes 20 or 30 years to show any symptoms even though

sometimes the damage is already advanced, people may have been

symptom free all that time.

Do you know what genotype he has? Genotype 1 is more

common.....about 70% of people who have hep c have genotype

1.....which is the more difficult to treat. Treatment is one year.

In most cases if you took treatment for less time you would relapse,

specially if he has alot of damage and he's over 50.

On the other hand a genotype 2 or 3 only needs 24 weeks of treatemnt

and they are now trying 12 weeks only on people who clear the virus

in the first week....but for those that don't clear in 4 weeks they

take the treatment for 24 weeks.

If you have a genotype 2 or 3 but already have cirrhosis then it's a

year. That is why it is best to have all the information together

before you try to decide what to do.

Please let me know if you have any other questions.

Silvia

>

> Hi all,

> I've read all of your posts, but Jody's post has intrigued me, so I

was prompted to write.

> My husband was recently diagnosed with Hepatitis C. The family

doctor referred him to a gastroenterologist. When we went to see

him, hubby came away from the visit shaking his head and announced

that he had no faith in the man. For example, when hubby asked

doctor how expensive the treatment was, the doctor asked him if he

could afford to buy a new car? Hubby replied that it depended on

what kind of car it was! This doctor poopood the remark and promptly

ushered us out of the office after giving hubby a requisition to

have a liver biopsy done. The doctor then told him that they could

talk some more after the results from the biopsy were announced.

Since Jody wrote that finding the right doctor was very important,

how do you go about finding one that is very knowledgable and

caring. Hubby has tons of questions to ask a very patient doctor.

So do I!

> Reading the posts have really helped me deal with the uncertainty

of this disease. We just celebrated our 25th. anniversary. Hubby

seems to have caught " the bug " about 28 years ago, and it has been

dormant all these years!

>

> in Indiana

>

>

>

> ---------------------------------

> Music Unlimited - Access over 1 million songs. Try it free.

>

>

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  • 5 months later...
Guest guest

Allie, check out Dr Gross in South Carolina. http://www.grossortho.com/ I found his info when looking into resurfacing on the SurfaceHippy group. I would be comfortable with him doing THR as well. He does the minimally invasive hip surgery.

Since you have an old osteotomy I'm wondering if you a dysplasia patient? You may want to check out the docs in the HipWomen group to find a specialist to meet your needs? Best of Luck in getting some pain relief and finding a good surgeon. -Barb, R CDH

Doctor

Hi,I'm new to this group, just came over from labrilicious. I will be needing a THR as soon as possible. I am unable to sit or bend due to sudden changes after my recent arthroscopy..more to the story but that would take forever!Does anyone know of an orthopedist who does small incision replacements from the FRONT (can't remember what that's called)? I have an old slipped femoral epiphisis which makes me need a custom stem plus old osteotomy, so I need someone with lots of experience.I am in North Carolina but would travel for someone with this expertise.Please help!Allie

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Hi Allie

I would agree with Barbra, go and see Dr Gross, he is an excellent surgeon and

you may find

that you will be a candidate for resurfacing, which would mean less bone loss

for you and Dr

Gross is onew of the best resurfacing (and THR) surgeons in US today.

Best Wishes

jane in Wales UK

sporting an attractive pair of resurfaced hips

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Where is Dr Gross located? RUTH

--- jane <laeticia_demorte@...> wrote:

> Hi Allie

>

> I would agree with Barbra, go and see Dr Gross, he

> is an excellent surgeon and you may find

> that you will be a candidate for resurfacing, which

> would mean less bone loss for you and Dr

> Gross is onew of the best resurfacing (and THR)

> surgeons in US today.

>

> Best Wishes

> jane in Wales UK

> sporting an attractive pair of resurfaced hips

>

>

>

>

>

>

>

__________________________________________________

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Hi Ruth

I have a whole list of doctors that do resurfacing on my website - but remember that they all do THRs too. You can look the docs up by state. Also almost all the docs on this list have been used by resurfaced hippies. I won't put any unknown doctors on the list if someone hasn't had good outcomes with them. Here is the list:

http://www.surfacehippy.info/listofdoctors.php

Good Luck. You never know, you might also be a candadite for a hip resurfacing. That would conserve your femur bone for a future revision if you ever needed it.

Pat in Ohio

3/15/06 LBHR De Smet

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Guest guest

Allie, I googled slipped femoral epiphisis last night, something new to me, not quite like dysplasia. You are very special, and I can see where you would want a doc with experience in treating your specific condition. Have you checked on HipUniverse? - http://www.hipuniverse.homestead.com/index.html There you will find a list of surgeons that do periacetabular osteotomy (PAO). It may not be a solution for you, but these guys are true hip specialists and may be able to help you. I think Millis in Boston and Trousdale at the Mayo Clinic will do a consult if you send x-rays. I may be worth calling their offices and see if they treat your condition or could point you to someone who would be better qualified. HipUniverse also has a message board. Best of luck to you. -Barb, R CDH

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- I had surgery just over a month ago at Fairfax Hospital by Dr. Hermansen. I was very happy with how everything went. If you want more details you can email at dkenyon57@.... You can ask your doctor for a referral. DaveK.kelly <edmccarty@...> wrote: hello, i was wondering if anyone has had surgery in the wash d.c. area , and if so who your doctor is. i am looking to talk to someone who has had surgery by my doctor, Dr. Prasad ,just looking to talk to someone who has had surgery done by him. thank you!!!

Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Earth Day

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http://www.geocities.com/thyroide for topdocs

most of them are NOT endos.

gracia

> Can anyone tell me how to find a decent dr. I live south of Atlanta,

> ga. I know an endocrinologist is better than a pcp, but how do you

> find one that is knowledgable about the entire metabolic system?

> Carol Mc

>

>

>

>

>

>

>

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  • 9 months later...

You do know that Cytomel is a T3 med. only..right?

Before I consulted Hertoghe, I had been on T4 meds only, T4 meds +

Cytomel and Thyroral.

As far as I know TSH (Thyroid Stimulating Hormone) only stimulates

the thyroid to produce T4 to covert to T3 which makes the metabolism

work.....

After one has been dx-ed hypo you can't be treated by the TSH , you

have to be treated by FT3. It's FT3 that if is high for a while can

that can contribute to osteopenia and osteoporosis..

TSH doesn't tell anything especially if your body doesn't convert

Ft4 to FT3 very well, like me... I take Armour Thyroid and Cytomel..

I don't know very much, but I am finding I have to do pay attention

to what I feel like on what meds. at what dose because my doctor's

nurse told me flat out they don't not dose by symptoms at ALL, just

by test numbers.. So, It's like a war every time I go to the doc.

If it doesn't get better within reason I will move on...

Bev

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Bev,

You wrote:

>

> ... As far as I know TSH (Thyroid Stimulating Hormone) only stimulates

> the thyroid to produce T4 to covert to T3 which makes the metabolism

> work.....

The thyroid itself converts about 1/3rd of the T4 to T3. TSH triggers

all of the thyroid activity.

> After one has been dx-ed hypo you can't be treated by the TSH , you

> have to be treated by FT3. ...

I would agree with that, if you are taking a T3 medication, which will

suppress the TSH. Otherwise TSH is still the most commonly used and

accepted indicator worldwide.

>...It's FT3 that if is high for a while can

> that can contribute to osteopenia and osteoporosis..

That study we cited from last year showed that if TSH is at 0.1 or

lower, regardless of how it gets there, you start to see the osteo

changes and significant cardiac ones also.

Chuck

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Thanks, Chuck. I was a little concerned and confused once again by all the

different ideas

concerning tsh, ft3, ft4 etc. This does make me feel a little better about what

I am doing in

my case.

Venizia

-- In hypothyroidism , Chuck B <gumboyaya@...> wrote:

>

> Bev,

>

> You wrote:

> >

> > ... As far as I know TSH (Thyroid Stimulating Hormone) only stimulates

> > the thyroid to produce T4 to covert to T3 which makes the metabolism

> > work.....

>

> The thyroid itself converts about 1/3rd of the T4 to T3. TSH triggers

> all of the thyroid activity.

>

> > After one has been dx-ed hypo you can't be treated by the TSH , you

> > have to be treated by FT3. ...

>

> I would agree with that, if you are taking a T3 medication, which will

> suppress the TSH. Otherwise TSH is still the most commonly used and

> accepted indicator worldwide.

>

> >...It's FT3 that if is high for a while can

> > that can contribute to osteopenia and osteoporosis..

>

> That study we cited from last year showed that if TSH is at 0.1 or

> lower, regardless of how it gets there, you start to see the osteo

> changes and significant cardiac ones also.

>

> Chuck

>

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I think you need to find another doctor. Since you never really see

" your " doctor in the first place (warning), and the associates don't

listen to you (warning) I'd get a second opinion from a doc not

associate with them.

Your not crazy you found a combination that works within limits of

what your were originally given. When docs stop listening it's time

to move on.

This is your life. It is important that you take care of yourself.

After everything I've read since starting on this list, I would run

far from this doc.

>

> For three years now, I have been the patient of Dr. Hertoghe, the

doctor some patients seem to mistake for God. However, I have never

been that impressed and that is why I need some advice from you.

>

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Chuck,

Does this mean that your FT3 could be in range too and your TSH 0.1 and

you'd still get osteo, or what are you saying?

thanks

Bev

> > >...It's FT3 that if is high for a while can

> > > that can contribute to osteopenia and osteoporosis..

> >

> > That study we cited from last year showed that if TSH is at 0.1 or

> > lower, regardless of how it gets there, you start to see the osteo

> > changes and significant cardiac ones also.

> >

> > Chuck

> >

>

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Bev wrote:

>

> Does this mean that your FT3 could be in range too and your TSH 0.1 and

> you'd still get osteo, or what are you saying?

Yes, I think that is what that paper concluded. I'm not sure I believe

the conclusion of any one study, however. I'm sure there is more to it.

It is enough to recommend caution, where before folks some would

completely ignore TSH.

Chuck

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Actually Hertoghe is a completely brilliant and wonderful person, one of the

few docs really dedicated to health of his patients. He just is unable to see

patients himself. Read his books!!!!

http://www.geocities.com/thyroide

Gracia

I think you need to find another doctor. Since you never really see

" your " doctor in the first place (warning), and the associates don't

listen to you (warning) I'd get a second opinion from a doc not

associate with them.

Your not crazy you found a combination that works within limits of

what your were originally given. When docs stop listening it's time

to move on.

This is your life. It is important that you take care of yourself.

After everything I've read since starting on this list, I would run

far from this doc.

>

> For three years now, I have been the patient of Dr. Hertoghe, the

doctor some patients seem to mistake for God. However, I have never

been that impressed and that is why I need some advice from you.

>

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I am surprised to hear that Dr Hertoghe is to devote himself more to research,

than hands on patient care. That is such a shame. But I guess selling books

about theories will provide him with a good pension. Does he even know or care

what his associates are actually doing, in his name? Thierry Hertoghe

Enterprises sounds clinical, cold and business like doesn't it? Far removed from

patient care. Where will he be drawing his research material from and how up to

date will it be without practising much 'hands on' patient care?

Val

doctor

For three years now, I have been the patient of Dr. Hertoghe, the doctor some

patients seem to mistake for God. However, I have never been that impressed and

that is why I need some advice from you.

First of all, it would be correct that to say that I have OFFICIALLY been a

patient of Dr. Hertoghe's since 2004. Although I have been to his office

countless times since then, I have only met him on one occasion and only for

about ten minutes. The first times, one of his associates (who is also on the

Belgium's top doctor list) took care of me, took my full history and gave me a

full physical exam. Then Hertoghe appeared for about ten minutes during my third

visit. He examined me briefly while talking on his mobile phone to someone about

a conference he was about to attend...! Then he scribbled down some notes and

left his associate in charge of everything. That was in the summer of 2004, and

since then I have not seen Hertoghe again. In november 2006, I received a letter

from his office saying that he will no longer be seeing patients but instead

will devote all his time and energy to research. Only if a patient requires " his

specific expertise " will he be available for

a consult. In all other cases, his patients will be treated by one of his

associates at his clinic, now called " Thierry Hertoghe Enterprises " . There, he

has not only associates but also a lot of secretaries and assistants running

around. It's really an industry, and the days when he sat down with patients for

hours to take their medical history (as described in his book " The hormone

solution " which made me consult him in the first place) are long gone...

Anyway, I have been on thyroid hormone replacement since early 2001 (was

diagnosed with Hashimoto's disease in late 2000), and I have had a really hard

time finding the right dose and brand of medication. Before I consulted

Hertoghe, I had been on T4 meds only, T4 meds + Cytomel and Thyroral. Most of my

symptoms went away, regardless of the medication I was on, but I always seemed

to be either slightly overdosed or slightly hypo. My hands and feet were either

cold or moist. My heart beat was either too slow or too fast, etc. I was either

hungry and putting on weight or finding it impossible to lose weight despite

rigorous dieting and exercise.

Hertoghe or rather his associate put me on Armour, first 90 mg a day and then

120 mg (telling me that I could raise it to 150 mg during the cold months). I

was told that Armour was likely to be better absorbed by the body than synthetic

hormones, and that its effects would be spread out more equally throughout the

day. Not so. Armour made my hyper symptoms worse and also increased my appetite

considerably; something I did not need given all the weight I put on while being

hypo.

So, a few months ago I decided to try out different approaches myself to

determine what helped and what did not (after all, I am the only one who really

knows how I feel). I have always thought that the ideal thing was to take one

single tablet a day. However, I discovered that 150 mcg of Euthyrox (T4) a day

was not enough while 175 mcg was a bit too much. So, I decided to take 150 mcg +

1/2 tablet of 25 mcg of day...and guess what? All my lingering symptoms cleared

up within a few days. Suddenly, my hand and feet were neither cold nor moist. My

appetite stabilized and, for the first time in years, I am able to lose weight.

Hertoghe put me on his thyroid diet (no grains, no dairy products, no coffee or

alcohol, a lot of meat, fish, fruit and vegetables) but it never helped me in

any way. Since the beginning of January I have been following Weight Watchers'

points program, and I have lost almost 16 pounds without any particular

effort...although I now eat bread, pasta,

potatoes and everything else I fancy. As long as I stick to the number of

points allowed each day, I lose weight much more effortlessly than I did on

Hertoghe's thyroid diet...without even needing extra T3!

Hertoghe's associate also diagnosed me with adrenal fatigue and put me on

Medrol, synthetic cortisone, although Hertoghe himself in his book says that he

favors natural hydrocortisone. The associate told me that natural cortisone can

cause weight gain, but exactly the same thing is said of synthethic

hydrocortisone! Besides, he put me on testosterone and progesterone, two

hormones that did not make me feel better in any way but insteaed caused fluid

retention and swelling. Once I stopped taking them, I started losing weight.

Sometimes I think that I must be crazy not to think that Hertoghe is the best

doctor in the world, but the truth is that he has done nothing for me. He is

very expensive (every visit to his office costs you about 195 USD), but I found

his hormone protocol neither impressiv nor useful. I wonder if I am the only

patient in the world to feel that way?

Anyway, last week I told his associate that I really feel great on 162,5 mcg

of Euthyrox and would like to stay on that dose. He then told me that my TSH

level was too low (it was 0.3; ref 0.2-4.0), and he said that it should ideally

be between 1.0-2.0 because that is considered the normal TSH level for people

who don't have thyroid disease. When I told him that I feel so much worse as

soon as my TSH is higher than 0.5, he simply answered that when you have a TSH

as low as I do you significantly increase the risk for osteoporosis. But my TSH

is still normal, although in the lower normal range...!

One interesting thing is that my TSH and my fT4 were almost identical on 150

mcg AND 162,5 mcg: 0.4/0.3 and 1.22/1.29 respectively (ref 0.9-1.8). The big

difference is my fT3; on 150 mcg of T4 it was 2.20 (ref 1,8-3,8) and when I

increased the dose to 162,5 mcgs a day the fT3 went up to 3.32. To me, it is

clear that my fT3 levels determine how I feel, not my fT4 levels or my TSH...!

But Hertoghe's associate (supposedly a doc, too) claims that my TSH is

the only thing that counts and that it " should " be between 1 and 2...!

My antibodies have gone from 3900 when I was first diagnosed to 29 last month,

so to me it is obvious that there is a connection between a low TSH and the

level of antibodies. I also believe that is the reason I feel worse as soon as

my TSH is higher than 0.5. But, according to the doctor, there is no such

connection...!

I refuse to decrease my daily dose of Euthyrox and start feeling miserable

again when I am finally feeling fine and losing weight. I can't believe that a

doctor working in Hertoghe's office and taking over his patients can actually

care more about the TSH (deemed inaccurate by so many, doctors and patients

alike) than about how the patient feels...!

It would be interesting to know how you feel about this...there are so many of

you who seem to have been through it all, so your comments and ideas would be

most welcome!

Catarina

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