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Barb,

You wrote:

>

> Hi Everyone,

>

> I received records from The Mayo Clinic yesterday. There are some

> numbers printed in bold print, and I don't know what they mean.

>

> I do know they are checking blood. MCH 34.0 pg HI with normal range of

> 27.4 to 33.0 pg, MCHC 35.6 g/dl HI with a normal range of 33.1 - 34.4

> g/dL, RDW 11.4 % LOW with a normal range of 11.9 - 15.5.

Don't worry about these. The worst thing these indicate is that you

might be a little low in B12 and folic acid. They have to do with

hemoglobin in cells and cell maturity. MCH and MCHC basically indicate

that you have slightly more of one type of cell than another. RDW says

you are not flooded with immature red blood cells, which is a good

thing. If these results were at the other ends of the ranges or grossly

outside, things might be different.

> The S-TSH was 6.8s mIU/L HI, and I know what that is. Free T4 1.0 ng/d,

> with no normal range shown. It appears I still haven't been tested for

> Free T3 or Reverse T3, even though I persist in requesting it. ...

If you have a total T4, you can calculate the FT3 from FT3/TT3 = FT4/TT4.

> ... I'm feeling pretty good on 1/2 of a Levothyroxin pill, which is only 12.5

> mcg. I'm not feeling hyper like I often did taking a whole pill.

High TSH but low effective dose suggest some other problem is afoot,

perhaps a pituitary issue. First, your " half " pill is 1/13th of my dose.

Most people with a TSH greater than 5 have pretty obvious hypoT

symptoms. is an exception. :)

Antibodies usually push the TSH down rather than up.

If how you feel and TSH disagree, I would put less faith in the TSH.

> Prior to my visit to Mayo, I was told all biopsies were done by

> surgeons. Mine was done by a radiologist....

A little odd but maybe not at Mayo. I'm sure he was trained and has

watched a lot of biopsies performed. The critical guy to have off

vacation is the pathologist who exams the collected tissue.

> ... Also, I don't know if it's related, but since I came back from the

> Clinic, I noticed my tongue was sore. I brushed it with my teeth as

> usual, but when I looked at it because of the soreness, I discovered it

> has a white coating and red lines where I brushed some of the coating

> off. ...

That could be Candida or one of several viruses, including Epstein-Barr

and herpes simplex. Chronic throat problems, cancer treatments, or

esophageal regurgitation can trigger any of these. Your doctor may have

to try several things before you find what really works, since these can

appear very similar.

> I remember Chuck saying at one time that the radioactive iodine uptake

> test was essential, but then my doctor said I didn't need it and

> scheduled a biopsy instead. ... Now that's it's

> not, do you think I need the radioactive uptake test and scan to

> determine hot and cold nodules, and how the thyroid is functioning?

No, the biopsy should answer those questions. The purpose of the uptake

test was eliminate possibilities without the risk associated with

aspiration biopsy. The damage, if any, has already been done. You may

need more biopsies at regular intervals, depending on what they found.

Be sure to ask the Mayo folks to mail or FAX you a copy of the test

results. They are yours, even though a doctor ordered them.

Chuck

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Thanks Chuck. You said is the exception. So I guess that means a person

could have a high TSH without many symptoms? Since you think some other problem

may be afoot, I wonder why no doctor has said that. I keep getting the

impression they aren't going to do anything they don't have to do, since I just

turned 65 and am on Medicare. How would one check for pituitary problems, or

would he? It's unsettling to think that something else could be wrong.

Barb

Re: More Numbers

Barb,

You wrote:

Hi Everyone,

I received records from The Mayo Clinic yesterday. There are some

numbers printed in bold print, and I don't know what they mean.

I do know they are checking blood. MCH 34.0 pg HI with normal range of

27.4 to 33.0 pg, MCHC 35.6 g/dl HI with a normal range of 33.1 - 34.4

g/dL, RDW 11.4 % LOW with a normal range of 11.9 - 15.5.

Don't worry about these. The worst thing these indicate is that you

ight be a little low in B12 and folic acid. They have to do with

emoglobin in cells and cell maturity. MCH and MCHC basically indicate

hat you have slightly more of one type of cell than another. RDW says

ou are not flooded with immature red blood cells, which is a good

hing. If these results were at the other ends of the ranges or grossly

utside, things might be different.

> The S-TSH was 6.8s mIU/L HI, and I know what that is. Free T4 1.0 ng/d,

with no normal range shown. It appears I still haven't been tested for

Free T3 or Reverse T3, even though I persist in requesting it. ...

If you have a total T4, you can calculate the FT3 from FT3/TT3 = FT4/TT4.

> ... I'm feeling pretty good on 1/2 of a Levothyroxin pill, which is only 12.5

mcg. I'm not feeling hyper like I often did taking a whole pill.

High TSH but low effective dose suggest some other problem is afoot,

erhaps a pituitary issue. First, your " half " pill is 1/13th of my dose.

ost people with a TSH greater than 5 have pretty obvious hypoT

ymptoms. is an exception. :)

Antibodies usually push the TSH down rather than up.

If how you feel and TSH disagree, I would put less faith in the TSH.

> Prior to my visit to Mayo, I was told all biopsies were done by

surgeons. Mine was done by a radiologist....

A little odd but maybe not at Mayo. I'm sure he was trained and has

atched a lot of biopsies performed. The critical guy to have off

acation is the pathologist who exams the collected tissue.

> ... Also, I don't know if it's related, but since I came back from the

Clinic, I noticed my tongue was sore. I brushed it with my teeth as

usual, but when I looked at it because of the soreness, I discovered it

has a white coating and red lines where I brushed some of the coating

off. ...

That could be Candida or one of several viruses, including Epstein-Barr

nd herpes simplex. Chronic throat problems, cancer treatments, or

sophageal regurgitation can trigger any of these. Your doctor may have

o try several things before you find what really works, since these can

ppear very similar.

> I remember Chuck saying at one time that the radioactive iodine uptake

test was essential, but then my doctor said I didn't need it and

scheduled a biopsy instead. ... Now that's it's

not, do you think I need the radioactive uptake test and scan to

determine hot and cold nodules, and how the thyroid is functioning?

No, the biopsy should answer those questions. The purpose of the uptake

est was eliminate possibilities without the risk associated with

spiration biopsy. The damage, if any, has already been done. You may

eed more biopsies at regular intervals, depending on what they found.

Be sure to ask the Mayo folks to mail or FAX you a copy of the test

esults. They are yours, even though a doctor ordered them.

Chuck

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

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Barb,

You wrote:

>

>

> Thanks Chuck. You said is the exception. So I guess that means a

> person could have a high TSH without many symptoms? Since you think some

> other problem may be afoot, I wonder why no doctor has said that....

I thought you said the endo noted that the rapid drop in TSH on a tiny

dose of T4 was odd. This is the other side of the same coin; your

symptoms have improved on a tiny dose, yet the TSH is still high.

The endo should be the one to sort out multiple system failures or

interactions. These are rare and difficult to recognize.

Chuck

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I thought you said the endo noted that the rapid drop in TSH on a tiny

dose of T4 was odd. This is the other side of the same coin; your

symptoms have improved on a tiny dose, yet the TSH is still high.

You have a good memory Chuck! When he said that, and I said I had read on-line

that it was very unusual, that's when he said he didn't want to hear about what

I had read on the Internet. It was strange because when I agreed with him and

indicated I thought the same thing, he said, " Well it's not unheard of, " and

that was the end of the conversation.

I think the TSH was still high because I had been off the medication for weeks,

with the exception of five days. I was off of it for five weeks because the

endo had said, " Maybe you don't have this, " and wanted me to go for another

blood test in case there had been a mistake on the first one. When the test

came back with a TSH of over 7 he told me to go back on it. Then the Mayo

Clinic called after five days and told me to stop it again because of my

appointment there.

You're right though. After the original diagnosis, I was on 25 mcg for six

weeks. Then the TSH went down below the normal range. So, it did make a big

swing on a very small dose. I just don't think my doctors intend to find out

why.

Barb

Re: More Numbers

Barb,

You wrote:

>

>

> Thanks Chuck. You said is the exception. So I guess that means a

> person could have a high TSH without many symptoms? Since you think some

> other problem may be afoot, I wonder why no doctor has said that....

I thought you said the endo noted that the rapid drop in TSH on a tiny

dose of T4 was odd. This is the other side of the same coin; your

symptoms have improved on a tiny dose, yet the TSH is still high.

The endo should be the one to sort out multiple system failures or

interactions. These are rare and difficult to recognize.

Chuck

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My TSH was found to be 5.6 IIRC with a high limit of 5.5 on a routine

annual checkup. Several weeks later it had increased to 6.6 IIRC. I

think that indicates that my hypothyroidism was discovered only a month

or 3 after my TSH started running near the high end of the normal

scale. If my speculation is correct then there was little time for

symptoms or organ damage to occur. Further, my metabolism and a few

other items would have caused one to more suspect that I might be

somewhat hypEr rather than hypO; but I don't know if that could have any

bearing.

I was titrated to a dose of 75 mcg, which is low for a person needing a

full replacement dose of my age, weight and gender. My dose is 600%

higher than your dose, so you can perhaps understand that your reactions

to such a low dose are to me unexpected. Although serious pituitary

problems are IMHO pretty rare it probably would be a good idea to rule

them out as Chuck suggested if possible [given you unexpected responses

to T4].

Luck,

..

..

>

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20More%20Numbers>

> westieabbey <westieabbey>

>

>

> Mon Jan 10, 2011 3:55 pm (PST)

>

>

>

>

>

> Thanks Chuck. You said is the exception. So I guess that means a

> person could have a high TSH without many symptoms? Since you think

> some other problem may be afoot, I wonder why no doctor has said that.

> I keep getting the impression they aren't going to do anything they

> don't have to do, since I just turned 65 and am on Medicare. How would

> one check for pituitary problems, or would he? It's unsettling to

> think that something else could be wrong.

>

> Barb

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Although serious pituitary

problems are IMHO pretty rare it probably would be a good idea to rule

them out as Chuck suggested if possible [given you unexpected responses

to T4].

,

Thanks for answering. I'm glad to hear your problem was discovered and treated

early. I just don't know what to think about mine. I seem to have symptoms of

hyperthyroid too, and I know with Hashimoto's it can go back and forth between

hypo and hyper. The doctor at Mayo Clinic was listening to my lungs, and said

my heart rate was even going up when I took a deep breath. That's after I had

been off medication for several weeks, with the exception of 5 days. The other

strange thing is that since being diagnosed with Hypothyroidism in August, I was

able to lose eight pounds quite easily. Then I thought at 110 pounds I was thin

enough, so started eating more. I gained back a couple of pounds. However, it

seems I can eat more than ever without gaining weight, and if I don't eat more

than usual I will lose weight. Now that I know I have Hashimoto's I understand.

Your suggestion about ruling out pituitary problems sounds good to me. I just

don't know how to do that. What tests would be required? Since my doctor

didn't want to hear about anything I had read on the Internet, is aware of the

TSH swings from high to low on very little medication, and doesn't recommend

further testing, how do I tell him what to do? As has been mentioned here,

sometimes they are pretty arrogant. Do you have any ideas? Also, if he thought

it was a possibility that I could have those problems based on the test results

and medications taken, why wouldn't he recommend it? Maybe for the same reason

he didn't order an antibody test to check for Hashimoto's. It definitely makes

a difference to know, because it helps me to understand what is going on. Why

wouldn't the doctor at the Mayo Clinic recommend checking for pituitary

problems? I asked him if he did testing for adrenal glands or anything else,

and he said he didn't think that was necessary.

I did the underlining in the following excerpt. Most of you probably know

these things, but I didn't before being diagnosed at the Mayo Clinic. That's

because much of it is inconsistent with Hypothyroidism, which was the only

diagnosis I had been given.

" Hashimoto's typically involves a slow but steady destruction of the gland that

eventually results in the thyroid's inability to produce sufficient thyroid

hormone -- the condition known as hypothyroidism. Along the way, however, there

can be periods where the thyroid sputters back to life, even causing temporary

hyperthyroidism, then a return to hypothyroidism. This cycling back and forth

between hypothyroidism and hyperthyroidism is characteristic of Hashimoto's

disease. So, for example, periods of anxiety/insomnia/diarrhea/weight loss may

be followed by periods of depression/fatigue/constipation/weight gain. In some

cases, the onset of Hashimoto's and elevation of antibodies will be accompanied

by a variety of symptoms, including anxiety, difficulty sleeping, fatigue,

weight changes, depression, hair loss, muscle/joint aches and pains, and

fertility problems, among others. "

" He explains that just as arthritis attacks the joints with pain and

inflammation, thyroiditis can mean pain and inflammation in the thyroid for some

sufferers. And in particular, during a thyroiditis attack, common symptoms are

anxiety, panic attacks, heart palpitations, swelling in the thyroid area,

problems swallowing, and frequently, problems sleeping. "

http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

Does anyone else but Ann live in FL? I'm just asking because being on Medicare

seems to mean minimum testing and expense per patient here. I have secondary

insurance with BCBS through AT & T, so don't understand the reluctance to do

testing that helps diagnose illness. Everyone knows doctors are trying to cut

Medicare expenses, but it not like I'm 90. I just turned 65.

Thanks for putting up with my ramblings.

Barb

Re: More Numbers

My TSH was found to be 5.6 IIRC with a high limit of 5.5 on a routine

annual checkup. Several weeks later it had increased to 6.6 IIRC. I

think that indicates that my hypothyroidism was discovered only a month

or 3 after my TSH started running near the high end of the normal

scale. If my speculation is correct then there was little time for

symptoms or organ damage to occur. Further, my metabolism and a few

other items would have caused one to more suspect that I might be

somewhat hypEr rather than hypO; but I don't know if that could have any

bearing.

I was titrated to a dose of 75 mcg, which is low for a person needing a

full replacement dose of my age, weight and gender. My dose is 600%

higher than your dose, so you can perhaps understand that your reactions

to such a low dose are to me unexpected. Although serious pituitary

problems are IMHO pretty rare it probably would be a good idea to rule

them out as Chuck suggested if possible [given you unexpected responses

to T4].

Luck,

..

..

>

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20More%20Numbers>

> westieabbey <westieabbey>

>

>

> Mon Jan 10, 2011 3:55 pm (PST)

>

>

>

>

>

> Thanks Chuck. You said is the exception. So I guess that means a

> person could have a high TSH without many symptoms? Since you think

> some other problem may be afoot, I wonder why no doctor has said that.

> I keep getting the impression they aren't going to do anything they

> don't have to do, since I just turned 65 and am on Medicare. How would

> one check for pituitary problems, or would he? It's unsettling to

> think that something else could be wrong.

>

> Barb

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Welcome to the invisible world of 65+. I too found out that unless I made sure

to vocalize with the doctors, I was essentially invisible, and the doctors

didn't even try.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

Hi Everyone,

I received records from The Mayo Clinic yesterday. There are some

numbers printed in bold print, and I don't know what they mean.

I do know they are checking blood. MCH 34.0 pg HI with normal range of

27.4 to 33.0 pg, MCHC 35.6 g/dl HI with a normal range of 33.1 - 34.4

g/dL, RDW 11.4 % LOW with a normal range of 11.9 - 15.5.

Don't worry about these. The worst thing these indicate is that you

ight be a little low in B12 and folic acid. They have to do with

emoglobin in cells and cell maturity. MCH and MCHC basically indicate

hat you have slightly more of one type of cell than another. RDW says

ou are not flooded with immature red blood cells, which is a good

hing. If these results were at the other ends of the ranges or grossly

utside, things might be different.

> The S-TSH was 6.8s mIU/L HI, and I know what that is. Free T4 1.0 ng/d,

with no normal range shown. It appears I still haven't been tested for

Free T3 or Reverse T3, even though I persist in requesting it. ...

If you have a total T4, you can calculate the FT3 from FT3/TT3 = FT4/TT4.

> ... I'm feeling pretty good on 1/2 of a Levothyroxin pill, which is only 12.5

mcg. I'm not feeling hyper like I often did taking a whole pill.

High TSH but low effective dose suggest some other problem is afoot,

erhaps a pituitary issue. First, your " half " pill is 1/13th of my dose.

ost people with a TSH greater than 5 have pretty obvious hypoT

ymptoms. is an exception. :)

Antibodies usually push the TSH down rather than up.

If how you feel and TSH disagree, I would put less faith in the TSH.

> Prior to my visit to Mayo, I was told all biopsies were done by

surgeons. Mine was done by a radiologist....

A little odd but maybe not at Mayo. I'm sure he was trained and has

atched a lot of biopsies performed. The critical guy to have off

acation is the pathologist who exams the collected tissue.

> ... Also, I don't know if it's related, but since I came back from the

Clinic, I noticed my tongue was sore. I brushed it with my teeth as

usual, but when I looked at it because of the soreness, I discovered it

has a white coating and red lines where I brushed some of the coating

off. ...

That could be Candida or one of several viruses, including Epstein-Barr

nd herpes simplex. Chronic throat problems, cancer treatments, or

sophageal regurgitation can trigger any of these. Your doctor may have

o try several things before you find what really works, since these can

ppear very similar.

> I remember Chuck saying at one time that the radioactive iodine uptake

test was essential, but then my doctor said I didn't need it and

scheduled a biopsy instead. ... Now that's it's

not, do you think I need the radioactive uptake test and scan to

determine hot and cold nodules, and how the thyroid is functioning?

No, the biopsy should answer those questions. The purpose of the uptake

est was eliminate possibilities without the risk associated with

spiration biopsy. The damage, if any, has already been done. You may

eed more biopsies at regular intervals, depending on what they found.

Be sure to ask the Mayo folks to mail or FAX you a copy of the test

esults. They are yours, even though a doctor ordered them.

Chuck

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

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I'm sorry they made you feel that way Roni. It's not right. When I try to

vocalize they interrupt, or tell me they don't want to hear it. That's the

local doctors, not the one I saw at the Mayo Clinic. I have a copy of the

paperwork from Mayo that says I need to follow up with my doctors here in 4 to 6

weeks for more bloodwork. My doctors have that paperwork too. I couldn't call

for a week after I got back, since I could hardly speak because of an upper

respiratory infection and Laringytis. When I called to make an appointment for

the follow up they made it for 8 weeks, completely disregarding the

recommendations of the Mayo Clinic, and my request to be seen within 6 weeks.

Since I couldn't talk for a week, the appointment was actually made for 9 weeks

away, instead of 4 to 6. What's most interesting is that when I call to make an

appointment, the first thing they ask for is my birthdate. So they know I'm 65,

and immediately say they're scheduling 8 weeks out.

Barb

Re: More Numbers

Welcome to the invisible world of 65+. I too found out that unless I made sure

to vocalize with the doctors, I was essentially invisible, and the doctors

didn't even try.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

Hi Everyone,

I received records from The Mayo Clinic yesterday. There are some

numbers printed in bold print, and I don't know what they mean.

I do know they are checking blood. MCH 34.0 pg HI with normal range of

27.4 to 33.0 pg, MCHC 35.6 g/dl HI with a normal range of 33.1 - 34.4

g/dL, RDW 11.4 % LOW with a normal range of 11.9 - 15.5.

Don't worry about these. The worst thing these indicate is that you

ight be a little low in B12 and folic acid. They have to do with

emoglobin in cells and cell maturity. MCH and MCHC basically indicate

hat you have slightly more of one type of cell than another. RDW says

ou are not flooded with immature red blood cells, which is a good

hing. If these results were at the other ends of the ranges or grossly

utside, things might be different.

> The S-TSH was 6.8s mIU/L HI, and I know what that is. Free T4 1.0 ng/d,

with no normal range shown. It appears I still haven't been tested for

Free T3 or Reverse T3, even though I persist in requesting it. ...

If you have a total T4, you can calculate the FT3 from FT3/TT3 = FT4/TT4.

> ... I'm feeling pretty good on 1/2 of a Levothyroxin pill, which is only 12.5

mcg. I'm not feeling hyper like I often did taking a whole pill.

High TSH but low effective dose suggest some other problem is afoot,

erhaps a pituitary issue. First, your " half " pill is 1/13th of my dose.

ost people with a TSH greater than 5 have pretty obvious hypoT

ymptoms. is an exception. :)

Antibodies usually push the TSH down rather than up.

If how you feel and TSH disagree, I would put less faith in the TSH.

> Prior to my visit to Mayo, I was told all biopsies were done by

surgeons. Mine was done by a radiologist....

A little odd but maybe not at Mayo. I'm sure he was trained and has

atched a lot of biopsies performed. The critical guy to have off

acation is the pathologist who exams the collected tissue.

> ... Also, I don't know if it's related, but since I came back from the

Clinic, I noticed my tongue was sore. I brushed it with my teeth as

usual, but when I looked at it because of the soreness, I discovered it

has a white coating and red lines where I brushed some of the coating

off. ...

That could be Candida or one of several viruses, including Epstein-Barr

nd herpes simplex. Chronic throat problems, cancer treatments, or

sophageal regurgitation can trigger any of these. Your doctor may have

o try several things before you find what really works, since these can

ppear very similar.

> I remember Chuck saying at one time that the radioactive iodine uptake

test was essential, but then my doctor said I didn't need it and

scheduled a biopsy instead. ... Now that's it's

not, do you think I need the radioactive uptake test and scan to

determine hot and cold nodules, and how the thyroid is functioning?

No, the biopsy should answer those questions. The purpose of the uptake

est was eliminate possibilities without the risk associated with

spiration biopsy. The damage, if any, has already been done. You may

eed more biopsies at regular intervals, depending on what they found.

Be sure to ask the Mayo folks to mail or FAX you a copy of the test

esults. They are yours, even though a doctor ordered them.

Chuck

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

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I think they ask for your birthday because that's how they pull up your computer

file, which they are probably doing while you are talking.

Marla

>

What's most interesting is that when I call to make an appointment, the first

thing they ask for is my birthdate. So they know I'm 65, and immediately say

they're scheduling 8 weeks out.

>

> Barb

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I live in FL, but am about a decade younger than you, so no Medicare experience

other than my parent's who also live here. My mother was " fired " by her general

pcp for asking too many questions. But now she has a pretty good doctor who

tested her Vit D, B12, iron, but still hasn't run any T3 tests. I think she

would if my mother insisted, but my mother doesn't get very involved in her own

health and just drags herself to the doctor and does what ever they say.

My point being, you should try to seek out a better doctor. I don't know about

where you live, but there are many doctors here on the west coast of FL, and the

majority of their patients are older. Look for someone with experience in

hormone, holistic, maybe a D.O.,but not another endo probably. I think the

specialists are afraid of stepping out of line; perhaps a fear of losing their

license.

For example, my endo ( a well regarded leader in the field of thyroid

ultrasound) was filling out a requisition form for lab serum thyroid levels for

me, and I asked him if he could include the iron panel too, as I hadn't checked

my iron levels in over a year ( done by another doctor). The endo said no, he

didn't know anything about iron, and so couldn't treat me for the results.

First of all, this is shocking coming from a thyroid doctor, as iron levels can

have a MAJOR impact on thyroid hormone activity. But secondly, it shows how

closely the doctors adhere to " the rules " , and how perhaps the doctors are

walking a fine line between compliance and patient care. Which is understandable

if it means risking their insurance/license/practice/reimbursement.

Best of luck,

Marla

>

> Does anyone else but Ann live in FL? I'm just asking because being on

Medicare seems to mean minimum testing and expense per patient here. I have

secondary insurance with BCBS through AT & T, so don't understand the reluctance

to do testing that helps diagnose illness. Everyone knows doctors are trying to

cut Medicare expenses, but it not like I'm 90. I just turned 65.

>

> Thanks for putting up with my ramblings.

>

> Barb

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Marla,

Thanks. That could be the case. It's just not right that they can't wait to

get you out of the office. There is one large medical group that has a monopoly

in this city, and many of my friends 65 and over have experienced the same

treatment. In fact, one who has friends within the system said they told her,

the doctors were limiting appointments of Medicare patients to five minutes.

Judging by my experience, that is exactly what they're doing.

I'm still looking for sugestions on how to get them to do pituitary testing.

Since the doctors don't suggest it with all the information they have, and some

here think it's necessary or a good idea. The question is, do they think it's

not necessary because for some reason they don't think I have a problem with

that, or because they are cutting back on Medicare costs? I'd hate to think

something would be overlooked because they are trying to cut costs.

Barb

Re: More Numbers

I think they ask for your birthday because that's how they pull up your computer

file, which they are probably doing while you are talking.

Marla

>

What's most interesting is that when I call to make an appointment, the first

thing they ask for is my birthdate. So they know I'm 65, and immediately say

they're scheduling 8 weeks out.

>

> Barb

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Marla,

I'm sorry to hear your Mom was fired by her doctor! You're right that there are

a lot of good doctors on the West Coast. They are also in South FL, Jkvl at the

Mayo Clinic, and Gainesville at Shands. I live in East Central Fl on the Space

Coast, and was shocked to find there are only two board certified endo doctors

within 100 miles of here. They both work at the medical group I mentioned, which

has a monopoly here.

I've thought about a holistic doctor, and am checking into that. There is one

here who does bioidentical hormones, but it might be only for estrogen. I'm

going to call her and a couple of other holistic doctors and see what I can find

out. A D.O. is something I hadn't thought of, even thought I went to one years

ago, and was happy with him. I understand what you're saying about the

specialists.

It is shocking that your endo refused to check your iron. Unbelievable!

Thanks for your good wishes.

Barb

Re: More Numbers

I live in FL, but am about a decade younger than you, so no Medicare experience

other than my parent's who also live here. My mother was " fired " by her general

pcp for asking too many questions. But now she has a pretty good doctor who

tested her Vit D, B12, iron, but still hasn't run any T3 tests. I think she

would if my mother insisted, but my mother doesn't get very involved in her own

health and just drags herself to the doctor and does what ever they say.

My point being, you should try to seek out a better doctor. I don't know about

where you live, but there are many doctors here on the west coast of FL, and the

majority of their patients are older. Look for someone with experience in

hormone, holistic, maybe a D.O.,but not another endo probably. I think the

specialists are afraid of stepping out of line; perhaps a fear of losing their

license.

For example, my endo ( a well regarded leader in the field of thyroid

ultrasound) was filling out a requisition form for lab serum thyroid levels for

me, and I asked him if he could include the iron panel too, as I hadn't checked

my iron levels in over a year ( done by another doctor). The endo said no, he

didn't know anything about iron, and so couldn't treat me for the results.

First of all, this is shocking coming from a thyroid doctor, as iron levels can

have a MAJOR impact on thyroid hormone activity. But secondly, it shows how

closely the doctors adhere to " the rules " , and how perhaps the doctors are

walking a fine line between compliance and patient care. Which is understandable

if it means risking their insurance/license/practice/reimbursement.

Best of luck,

Marla

>

> Does anyone else but Ann live in FL? I'm just asking because being on Medicare

seems to mean minimum testing and expense per patient here. I have secondary

insurance with BCBS through AT & T, so don't understand the reluctance to do

testing that helps diagnose illness. Everyone knows doctors are trying to cut

Medicare expenses, but it not like I'm 90. I just turned 65.

>

> Thanks for putting up with my ramblings.

>

> Barb

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Hi, Barb. I'll try to respond to some of your questions below; but as

always please remember I'm no expert on anything. Further, some of your

reactions give me cause to wonder if I even know what I thought I knew

about hypothyroidism...

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20More%20Numbers>

> westieabbey <westieabbey>

>

>

> Tue Jan 11, 2011 6:38 pm (PST)

>

>

>

> wrote:

>

> >Although serious pituitary

> >problems are IMHO pretty rare it probably would be a good idea to rule

> >them out as Chuck suggested if possible [given you unexpected responses

> >to T4].

>

> ,

>

> Thanks for answering. I'm glad to hear your problem was discovered and

> treated early. I just don't know what to think about mine. I seem to

> have symptoms of hyperthyroid too, and I know with Hashimoto's it can

> go back and forth between hypo and hyper. The doctor at Mayo Clinic

> was listening to my lungs, and said my heart rate was even going up

> when I took a deep breath. That's after I had been off medication for

> several weeks, with the exception of 5 days. The other strange thing

> is that since being diagnosed with Hypothyroidism in August, I was

> able to lose eight pounds quite easily. Then I thought at 110 pounds I

> was thin enough, so started eating more. I gained back a couple of

> pounds. However, it seems I can eat more than ever without gaining

> weight, and if I don't eat more than usual I will lose weight. Now

> that I know I have Hashimoto's I understand.

..

..

Easy weight loss with hypothyroidism typically just don't go together;

something else that confounds me. Usually with hypo you tend to gain

weight or to have problems losing weight. That's IMHO because your

metabolism is lowered and you burn fewer calories in just maintaining

your life processes. And in addition you're often feeling too tired or

unwell to exercise. I'm a bit heavy for 5'-11 " and 190 lbs but I eat

like a pig. My wife is horrified at the quantity of fat grams and

calories I consume; and frequently tells me so. I just laugh and tell

her our religions are different: I don't believe in fat grams and

calories! [ggg]

..

..

>

> Your suggestion about ruling out pituitary problems sounds good to me.

> I just don't know how to do that. What tests would be required?

..

..

In my case I had a second symptom of possible pituitary problem,

phantosmia. Hypothyroidism [or at least elevated TSH was the first]. I

asked my doctor and he ordered an MRI.

> Since my doctor didn't want to hear about anything I had read on the

> Internet,

..

..

Hopefully your doctor had in mind that much of the info on the internet

is pure bunk. A couple of possibilities are more troubling: If he just

doesn't want a well informed patient then to put it bluntly IMHO you

need another doctor. Another possibility is that he may have judged

that you don't have the necessary education or IQ to intelligently

discuss the issues. In our culture we males have tended to " talk down "

to women, even when we don't intend to do so; and further, when it is

totally unjustified. You may just have to put you foot down and insist

that you be an equal partner in your quest to find out what is going on

and to get the relief you need. If your doctor can't deal with that

then again IMHO you need another doctor.

..

..

> is aware of the TSH swings from high to low on very little medication,

> and doesn't recommend further testing, how do I tell him what to do?

> As has been mentioned here, sometimes they are pretty arrogant. Do you

> have any ideas? Also, if he thought it was a possibility that I could

> have those problems based on the test results and medications taken,

> why wouldn't he recommend it? Maybe for the same reason he didn't

> order an antibody test to check for Hashimoto's. It definitely makes a

> difference to know, because it helps me to understand what is going

> on. Why wouldn't the doctor at the Mayo Clinic recommend checking for

> pituitary problems? I asked him if he did testing for adrenal glands

> or anything else, and he said he didn't think that was necessary.

..

..

On the one hand we require doctors to make god-like life and death

decisions for ourselves and for those we love more than life. But they

are not gods; they're just human. And all humans make errors. Mistakes

can be very costly when health and life are the stakes. Most are

well-meaning, very intelligent [at least above average], hard working

and well educated. If you've actually encountered arrogance I'd be

looking elsewhere. But don't confuse the fact that Medicare probably

pays for about 5 minutes of your doctor's time for an office visit and

he HAS to see a LOT of patients if he is going to pay the expenses of

running his business; much less earn a salary.

And the paperwork is horrendous. And any decision made by the doctor

[tests, prescriptions] that are outside of " usual and customary " may be

questioned. One of my doctors showed me the folder he has had to

compile on me in his dealings with Medicare [This occurred after yet

another of the prescriptions he gave me was turned down by Medicare]. I

was astonished; frankly I suspect that the time needed to compile that

large folder was worth far more than Medicare paid him for all of my

many visits to that office.

But enough rambling. I guess it's enough for you to once again get the

idea that I don't really have a good answer for you. Probably your

doctor ordered what he felt was " reasonably necessary " .

..

..

>

> I did the underlining in the following excerpt. Most of you probably

> know these things, but I didn't before being diagnosed at the Mayo

> Clinic. That's because much of it is inconsistent with Hypothyroidism,

> which was the only diagnosis I had been given.

>

> " Hashimoto's typically involves a slow but steady destruction of the

> gland that eventually results in the thyroid's inability to produce

> sufficient thyroid hormone -- the condition known as hypothyroidism.

> Along the way, however, there can be periods where the thyroid

> sputters back to life, even causing temporary hyperthyroidism, then a

> return to hypothyroidism. This cycling back and forth between

> hypothyroidism and hyperthyroidism is characteristic of Hashimoto's

> disease. So, for example, periods of anxiety/insomnia/

> diarrhea/weight loss may be followed by periods of

> depression/fatigue/constipation/weight gain. In some cases, the onset

> of Hashimoto's and elevation of antibodies will be accompanied by a

> variety of symptoms, including anxiety, difficulty sleeping, fatigue,

> weight changes, depression, hair loss, muscle/joint aches and pains,

> and fertility problems, among others. "

>

> " He explains that just as arthritis attacks the joints with pain and

> inflammation, thyroiditis can mean pain and inflammation in the

> thyroid for some sufferers. And in particular, during a thyroiditis

> attack, common symptoms are anxiety, panic attacks, heart

> palpitations, swelling in the thyroid area, problems swallowing, and

> frequently, problems sleeping. "

>

> http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

> <http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm>

>

> Does anyone else but Ann live in FL? I'm just asking because being on

> Medicare seems to mean minimum testing and expense per patient here. I

> have secondary insurance with BCBS through AT & T, so don't understand

> the reluctance to do testing that helps diagnose illness. Everyone

> knows doctors are trying to cut Medicare expenses, but it not like I'm

> 90. I just turned 65.

..

..

I live in , which is near Tampa. I turn 70 tomorrow, Jan. 13th.

I've never experienced any problem at all in getting any tests needed;

and often I get tests that I wonder if I do need. It is actually in the

financial interests of the doctor to do more procedures and order more

tests because he then gets paid more. Yesterday I had a coronary stress

test and two of the tests where the machine goes from right to left as

it pauses 12 seconds every couple of inches for some kind of scan.

Since I have arrhythmia my cardiologists seems to want to keep a close

watch on things.

Best,

..

..

>

> Thanks for putting up with my ramblings.

>

> Barb

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Barb,

You wrote:

>

> I'm still looking for sugestions on how to get them to do pituitary

> testing. Since the doctors don't suggest it with all the information

> they have, and some here think it's necessary or a good idea....

I doubt that your type of medical insurance is behind their testing

protocol. They simply don't see a compelling reason in your tests so far

to indicate an over active pituitary. I would suggest you keep it in

mind as a possibility if more contradictory results accrue.

The pituitary is a critical gland in several feedback loops.

Consequently, there is only one direct test on pituitary function. In

that, they give a drug that blocks adrenal activity and see if the

pituitary responds by producing ACTH. Low ACTH would then indicate an

under active pituitary. Since this is not what your combination (high

TSH but hyperT or tending that way) suggests, they would do an indirect

test.

The only indirect test appropriate for age 65 is really a test of

adrenal function. If they give you ACTH and the adrenals do not respond

by producing cortisol, it indicates they are already getting too much

ACTH. This would confirm an over active pituitary. The other tests for

over activity include prolactin (only works if lactating), hCG (if

pregnant), LH and FSH (if menstruating), and growth hormone (GH).

Another common indirect test is to induce hypoglycemia with insulin. The

pituitary should respond with ACTH. Like the first test, this only

indicates an under active pituitary.

So, all of the possible testing you are requesting boils down to an

ACTH-cortisol test. Unless an endo sees evidence of excess cortisol, he

is not likely to order such a test, even though an over active pituitary

may be a possibility.

Chuck

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Yes, it's very upsetting, to say the least.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

Hi Everyone,

I received records from The Mayo Clinic yesterday. There are some

numbers printed in bold print, and I don't know what they mean.

I do know they are checking blood. MCH 34.0 pg HI with normal range of

27.4 to 33.0 pg, MCHC 35.6 g/dl HI with a normal range of 33.1 - 34.4

g/dL, RDW 11.4 % LOW with a normal range of 11.9 - 15.5.

Don't worry about these. The worst thing these indicate is that you

ight be a little low in B12 and folic acid. They have to do with

emoglobin in cells and cell maturity. MCH and MCHC basically indicate

hat you have slightly more of one type of cell than another. RDW says

ou are not flooded with immature red blood cells, which is a good

hing. If these results were at the other ends of the ranges or grossly

utside, things might be different.

> The S-TSH was 6.8s mIU/L HI, and I know what that is. Free T4 1.0 ng/d,

with no normal range shown. It appears I still haven't been tested for

Free T3 or Reverse T3, even though I persist in requesting it. ...

If you have a total T4, you can calculate the FT3 from FT3/TT3 = FT4/TT4.

> ... I'm feeling pretty good on 1/2 of a Levothyroxin pill, which is only 12.5

mcg. I'm not feeling hyper like I often did taking a whole pill.

High TSH but low effective dose suggest some other problem is afoot,

erhaps a pituitary issue. First, your " half " pill is 1/13th of my dose.

ost people with a TSH greater than 5 have pretty obvious hypoT

ymptoms. is an exception. :)

Antibodies usually push the TSH down rather than up.

If how you feel and TSH disagree, I would put less faith in the TSH.

> Prior to my visit to Mayo, I was told all biopsies were done by

surgeons. Mine was done by a radiologist....

A little odd but maybe not at Mayo. I'm sure he was trained and has

atched a lot of biopsies performed. The critical guy to have off

acation is the pathologist who exams the collected tissue.

> ... Also, I don't know if it's related, but since I came back from the

Clinic, I noticed my tongue was sore. I brushed it with my teeth as

usual, but when I looked at it because of the soreness, I discovered it

has a white coating and red lines where I brushed some of the coating

off. ...

That could be Candida or one of several viruses, including Epstein-Barr

nd herpes simplex. Chronic throat problems, cancer treatments, or

sophageal regurgitation can trigger any of these. Your doctor may have

o try several things before you find what really works, since these can

ppear very similar.

> I remember Chuck saying at one time that the radioactive iodine uptake

test was essential, but then my doctor said I didn't need it and

scheduled a biopsy instead. ... Now that's it's

not, do you think I need the radioactive uptake test and scan to

determine hot and cold nodules, and how the thyroid is functioning?

No, the biopsy should answer those questions. The purpose of the uptake

est was eliminate possibilities without the risk associated with

spiration biopsy. The damage, if any, has already been done. You may

eed more biopsies at regular intervals, depending on what they found.

Be sure to ask the Mayo folks to mail or FAX you a copy of the test

esults. They are yours, even though a doctor ordered them.

Chuck

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

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It has been my experience that endos are the worst doctors to go to in order to

be treated for thyroid. An Internist, GP, Rheumatologist or even my Cardiologist

was more willing to test and did than an endo ever was.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Re: Re: More Numbers

hypothyroidism

Date: Wednesday, January 12, 2011, 9:44 AM

Marla,

I'm sorry to hear your Mom was fired by her doctor!  You're right that there are

a lot of good doctors on the West Coast.  They are also in South FL, Jkvl at the

Mayo Clinic, and Gainesville at Shands.  I live in East Central Fl on the Space

Coast,  and was shocked to find there are only two board certified endo doctors

within 100 miles of here. They both work at the medical group I mentioned, which

has a monopoly here.

I've thought about a holistic doctor, and am checking into that.  There is one

here who does bioidentical hormones, but it might be only for estrogen.  I'm

going to call her and a couple of other holistic doctors and see what I can find

out.  A D.O. is something I hadn't thought of, even thought I went to one years

ago, and was happy with him.  I understand what you're saying about the

specialists. 

It is shocking that your endo refused to check your iron.  Unbelievable!

Thanks for your good wishes.

Barb

Re: More Numbers

I live in FL, but am about a decade younger than you, so no Medicare experience

other than my parent's who also live here. My mother was " fired " by her general

pcp for asking too many questions. But now she has a pretty good doctor who

tested her Vit D, B12, iron, but still hasn't run any T3 tests. I think she

would if my mother insisted, but my mother doesn't get very involved in her own

health and just drags herself to the doctor and does what ever they say.

My point being, you should try to seek out a better doctor. I don't know about

where you live, but there are many doctors here on the west coast of FL, and the

majority of their patients are older. Look for someone with experience in

hormone, holistic, maybe a D.O.,but not another endo probably. I think the

specialists are afraid of stepping out of line; perhaps a fear of losing their

license.

For example, my endo ( a well regarded leader in the field of thyroid

ultrasound) was filling out a requisition form for lab serum thyroid levels for

me, and I asked him if he could include the iron panel too, as I hadn't checked

my iron levels in over a year ( done by another doctor). The endo said no, he

didn't know anything about iron, and so couldn't treat me for the results.

First of all, this is shocking coming from a thyroid doctor, as iron levels can

have a MAJOR impact on thyroid hormone activity. But secondly, it shows how

closely the doctors adhere to " the rules " , and how perhaps the doctors are

walking a fine line between compliance and patient care. Which is understandable

if it means risking their insurance/license/practice/reimbursement.

Best of luck,

Marla

>

> Does anyone else but Ann live in FL? I'm just asking because being on Medicare

seems to mean minimum testing and expense per patient here. I have secondary

insurance with BCBS through AT & T, so don't understand the reluctance to do

testing that helps diagnose illness. Everyone knows doctors are trying to cut

Medicare expenses, but it not like I'm 90. I just turned 65.

>

> Thanks for putting up with my ramblings.

>

> Barb

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What you just said makes perfect sense. The problem with all the endos I've

seen, is that they either misread or ignore what they see and adhere to their

own personal idea of what  problems you may or may not have. Not testing is one

of the ways that they can maintain their positions because if the don't test,

they don't see the problems and they don't address them.  They are arbitrary and

dismissive and totally reluctant to entertain any new idea.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

>

> I'm still looking for sugestions on how to get them to do pituitary

> testing. Since the doctors don't suggest it with all the information

> they have, and some here think it's necessary or a good idea....

I doubt that your type of medical insurance is behind their testing

protocol. They simply don't see a compelling reason in your tests so far

to indicate an over active pituitary. I would suggest you keep it in

mind as a possibility if more contradictory results accrue.

The pituitary is a critical gland in several feedback loops.

Consequently, there is only one direct test on pituitary function. In

that, they give a drug that blocks adrenal activity and see if the

pituitary responds by producing ACTH. Low ACTH would then indicate an

under active pituitary. Since this is not what your combination (high

TSH but hyperT or tending that way) suggests, they would do an indirect

test.

The only indirect test appropriate for age 65 is really a test of

adrenal function. If they give you ACTH and the adrenals do not respond

by producing cortisol, it indicates they are already getting too much

ACTH. This would confirm an over active pituitary. The other tests for

over activity include prolactin (only works if lactating), hCG (if

pregnant), LH and FSH (if menstruating), and growth hormone (GH).

Another common indirect test is to induce hypoglycemia with insulin. The

pituitary should respond with ACTH. Like the first test, this only

indicates an under active pituitary.

So, all of the possible testing you are requesting boils down to an

ACTH-cortisol test. Unless an endo sees evidence of excess cortisol, he

is not likely to order such a test, even though an over active pituitary

may be a possibility.

Chuck

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

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Roni,

There seems to be a lot of agreement here about endos. I plan to make my next

appointment with the internist. He doesn't know much about thyroid issues, but

might be more inclined to do further testing if I request it. We'll see.

Barb

Re: More Numbers

I live in FL, but am about a decade younger than you, so no Medicare experience

other than my parent's who also live here. My mother was " fired " by her general

pcp for asking too many questions. But now she has a pretty good doctor who

tested her Vit D, B12, iron, but still hasn't run any T3 tests. I think she

would if my mother insisted, but my mother doesn't get very involved in her own

health and just drags herself to the doctor and does what ever they say.

My point being, you should try to seek out a better doctor. I don't know about

where you live, but there are many doctors here on the west coast of FL, and the

majority of their patients are older. Look for someone with experience in

hormone, holistic, maybe a D.O.,but not another endo probably. I think the

specialists are afraid of stepping out of line; perhaps a fear of losing their

license.

For example, my endo ( a well regarded leader in the field of thyroid

ultrasound) was filling out a requisition form for lab serum thyroid levels for

me, and I asked him if he could include the iron panel too, as I hadn't checked

my iron levels in over a year ( done by another doctor). The endo said no, he

didn't know anything about iron, and so couldn't treat me for the results.

First of all, this is shocking coming from a thyroid doctor, as iron levels can

have a MAJOR impact on thyroid hormone activity. But secondly, it shows how

closely the doctors adhere to " the rules " , and how perhaps the doctors are

walking a fine line between compliance and patient care. Which is understandable

if it means risking their insurance/license/practice/reimbursement.

Best of luck,

Marla

>

> Does anyone else but Ann live in FL? I'm just asking because being on Medicare

seems to mean minimum testing and expense per patient here. I have secondary

insurance with BCBS through AT & T, so don't understand the reluctance to do

testing that helps diagnose illness. Everyone knows doctors are trying to cut

Medicare expenses, but it not like I'm 90. I just turned 65.

>

> Thanks for putting up with my ramblings.

>

> Barb

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So, all of the possible testing you are requesting boils down to an

ACTH-cortisol test. Unless an endo sees evidence of excess cortisol, he

is not likely to order such a test, even though an over active pituitary

may be a possibility.

Chuck,

I continue to be amazed by how much you know! How do you know all this?

Anyway, I'm glad you do, and thanks for sharing your knowledge with the rest of

us. It is very helpful. Do you know what a doctor might be looking for as

" evidence of excess cortisol " ?

Thanks,

Barb

Re: Re: More Numbers

What you just said makes perfect sense. The problem with all the endos I've

seen, is that they either misread or ignore what they see and adhere to their

own personal idea of what problems you may or may not have. Not testing is one

of the ways that they can maintain their positions because if the don't test,

they don't see the problems and they don't address them. They are arbitrary and

dismissive and totally reluctant to entertain any new idea.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

>

> I'm still looking for sugestions on how to get them to do pituitary

> testing. Since the doctors don't suggest it with all the information

> they have, and some here think it's necessary or a good idea....

I doubt that your type of medical insurance is behind their testing

protocol. They simply don't see a compelling reason in your tests so far

to indicate an over active pituitary. I would suggest you keep it in

mind as a possibility if more contradictory results accrue.

The pituitary is a critical gland in several feedback loops.

Consequently, there is only one direct test on pituitary function. In

that, they give a drug that blocks adrenal activity and see if the

pituitary responds by producing ACTH. Low ACTH would then indicate an

under active pituitary. Since this is not what your combination (high

TSH but hyperT or tending that way) suggests, they would do an indirect

test.

The only indirect test appropriate for age 65 is really a test of

adrenal function. If they give you ACTH and the adrenals do not respond

by producing cortisol, it indicates they are already getting too much

ACTH. This would confirm an over active pituitary. The other tests for

over activity include prolactin (only works if lactating), hCG (if

pregnant), LH and FSH (if menstruating), and growth hormone (GH).

Another common indirect test is to induce hypoglycemia with insulin. The

pituitary should respond with ACTH. Like the first test, this only

indicates an under active pituitary.

So, all of the possible testing you are requesting boils down to an

ACTH-cortisol test. Unless an endo sees evidence of excess cortisol, he

is not likely to order such a test, even though an over active pituitary

may be a possibility.

Chuck

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

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This discussion got me angry that I was having ear pain and my Internist

scheduled me for an ear test which was done about two weeks ago. The audiologist

told me I had damage and needed to see an ENT. Well, when I called the

receptionist scheduled me for 2/22nd.

I heard one of the doctors on The Doctors speak about middle ear damage and that

one comes from the nerves and there's nothing much that can be done and one

comes from a virus and could leave the patient deaf. So totally it's been about

three months since I began to have this intermittent pain. I called the office

again today. The first time she didn't call back so I called again and spoke to

his assistant and told her what the trouble was and she said she'd transfer me

to the receptionist that makes the appointments.

 

I spoke to her and told her what I just said above, and that I'm concerned

because it's possible that I could become deaf. Well, from February 22nd, she

was able to SQUEEZE me in on January 25th and said that if they get a

cancellation she'll call me and put me

in.

 

I do have to keep remembering that I'm my only advocate and I have to use my

mouth

for my own behalf, or get run over by the medical bus. I just told this story

even though

it has nothing to do with thyroid so that you will all be able to see that you

don't have to

accept less than good treatment. We need to remember that.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Re: Re: More Numbers

hypothyroidism

Date: Wednesday, January 12, 2011, 9:44 AM

Marla,

I'm sorry to hear your Mom was fired by her doctor!  You're right that there are

a lot of good doctors on the West Coast.  They are also in South FL, Jkvl at the

Mayo Clinic, and Gainesville at Shands.  I live in East Central Fl on the Space

Coast,  and was shocked to find there are only two board certified endo doctors

within 100 miles of here. They both work at the medical group I mentioned, which

has a monopoly here.

I've thought about a holistic doctor, and am checking into that.  There is one

here who does bioidentical hormones, but it might be only for estrogen.  I'm

going to call her and a couple of other holistic doctors and see what I can find

out.  A D.O. is something I hadn't thought of, even thought I went to one years

ago, and was happy with him.  I understand what you're saying about the

specialists. 

It is shocking that your endo refused to check your iron.  Unbelievable!

Thanks for your good wishes.

Barb

Re: More Numbers

I live in FL, but am about a decade younger than you, so no Medicare experience

other than my parent's who also live here. My mother was " fired " by her general

pcp for asking too many questions. But now she has a pretty good doctor who

tested her Vit D, B12, iron, but still hasn't run any T3 tests. I think she

would if my mother insisted, but my mother doesn't get very involved in her own

health and just drags herself to the doctor and does what ever they say.

My point being, you should try to seek out a better doctor. I don't know about

where you live, but there are many doctors here on the west coast of FL, and the

majority of their patients are older. Look for someone with experience in

hormone, holistic, maybe a D.O.,but not another endo probably. I think the

specialists are afraid of stepping out of line; perhaps a fear of losing their

license.

For example, my endo ( a well regarded leader in the field of thyroid

ultrasound) was filling out a requisition form for lab serum thyroid levels for

me, and I asked him if he could include the iron panel too, as I hadn't checked

my iron levels in over a year ( done by another doctor). The endo said no, he

didn't know anything about iron, and so couldn't treat me for the results.

First of all, this is shocking coming from a thyroid doctor, as iron levels can

have a MAJOR impact on thyroid hormone activity. But secondly, it shows how

closely the doctors adhere to " the rules " , and how perhaps the doctors are

walking a fine line between compliance and patient care. Which is understandable

if it means risking their insurance/license/practice/reimbursement.

Best of luck,

Marla

>

> Does anyone else but Ann live in FL? I'm just asking because being on Medicare

seems to mean minimum testing and expense per patient here. I have secondary

insurance with BCBS through AT & T, so don't understand the reluctance to do

testing that helps diagnose illness. Everyone knows doctors are trying to cut

Medicare expenses, but it not like I'm 90. I just turned 65.

>

> Thanks for putting up with my ramblings.

>

> Barb

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Roni,

That's a very good story, except the part that you could become deaf!! I

sure hope that's not the case. It's good you called and were able to get

the appointment moved up about a month. Please keep us posted on what you

find out. What I meant was, the advice is good, and I'll make sure to

keep speaking up. You're right. If we don't who will?

Barb

In a message dated 1/12/2011 6:55:34 P.M. Eastern Standard Time,

matchermaam@... writes:

This discussion got me angry that I was having ear pain and my Internist

scheduled me for an ear test which was done about two weeks ago. The

audiologist told me I had damage and needed to see an ENT. Well, when I called

the

receptionist scheduled me for 2/22nd.

I heard one of the doctors on The Doctors speak about middle ear damage

and that one comes from the nerves and there's nothing much that can be done

and one comes from a virus and could leave the patient deaf. So totally

it's been about three months since I began to have this intermittent pain. I

called the office again today. The first time she didn't call back so I

called again and spoke to his assistant and told her what the trouble was and

she said she'd transfer me to the receptionist that makes the appointments.

I spoke to her and told her what I just said above, and that I'm concerned

because it's possible that I could become deaf. Well, from February 22nd,

she was able to SQUEEZE me in on January 25th and said that if they get a

cancellation she'll call me and put me

in.

I do have to keep remembering that I'm my only advocate and I have to use

my mouth

for my own behalf, or get run over by the medical bus. I just told this

story even though

it has nothing to do with thyroid so that you will all be able to see that

you don't have to

accept less than good treatment. We need to remember that.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

From: H <_macbarb0503@..._ (mailto:macbarb0503@...) >

Subject: Re: Re: More Numbers

_hypothyroidism _

(mailto:hypothyroidism )

Date: Wednesday, January 12, 2011, 9:44 AM

Marla,

I'm sorry to hear your Mom was fired by her doctor! You're right that

there are a lot of good doctors on the West Coast. They are also in South FL,

Jkvl at the Mayo Clinic, and Gainesville at Shands. I live in East

Central Fl on the Space Coast, and was shocked to find there are only two

board

certified endo doctors within 100 miles of here. They both work at the

medical group I mentioned, which has a monopoly here.

I've thought about a holistic doctor, and am checking into that. There is

one here who does bioidentical hormones, but it might be only for

estrogen. I'm going to call her and a couple of other holistic doctors and see

what I can find out. A D.O. is something I hadn't thought of, even thought I

went to one years ago, and was happy with him. I understand what you're

saying about the specialists.

It is shocking that your endo refused to check your iron. Unbelievable!

Thanks for your good wishes.

Barb

Re: More Numbers

I live in FL, but am about a decade younger than you, so no Medicare

experience other than my parent's who also live here. My mother was " fired " by

her general pcp for asking too many questions. But now she has a pretty good

doctor who tested her Vit D, B12, iron, but still hasn't run any T3 tests.

I think she would if my mother insisted, but my mother doesn't get very

involved in her own health and just drags herself to the doctor and does what

ever they say.

My point being, you should try to seek out a better doctor. I don't know

about where you live, but there are many doctors here on the west coast of

FL, and the majority of their patients are older. Look for someone with

experience in hormone, holistic, maybe a D.O.,but not another endo probably. I

think the specialists are afraid of stepping out of line; perhaps a fear of

losing their license.

For example, my endo ( a well regarded leader in the field of thyroid

ultrasound) was filling out a requisition form for lab serum thyroid levels for

me, and I asked him if he could include the iron panel too, as I hadn't

checked my iron levels in over a year ( done by another doctor). The endo

said no, he didn't know anything about iron, and so couldn't treat me for the

results.

First of all, this is shocking coming from a thyroid doctor, as iron

levels can have a MAJOR impact on thyroid hormone activity. But secondly, it

shows how closely the doctors adhere to " the rules " , and how perhaps the

doctors are walking a fine line between compliance and patient care. Which is

understandable if it means risking their

insurance/license/practice/reimbursement.

Best of luck,

Marla

>

> Does anyone else but Ann live in FL? I'm just asking because being on

Medicare seems to mean minimum testing and expense per patient here. I have

secondary insurance with BCBS through AT & T, so don't understand the

reluctance to do testing that helps diagnose illness. Everyone knows doctors

are

trying to cut Medicare expenses, but it not like I'm 90. I just turned 65.

>

> Thanks for putting up with my ramblings.

>

> Barb

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Barb,

You wrote:

>

>

> ... Do you know what a doctor might be

> looking for as " evidence of excess cortisol " ?

They would look for indications of Cushing's (too much cortisol). Do you

remember how Jerry looked when he had been taking prednisone for a

long time? That was a severe Cushing-oid look.

We went through all this with my son, who turned out to not have either

pituitary or adrenal malfunctions.

Chuck

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Easy weight loss with hypothyroidism typically just don't go together;

something else that confounds me. Usually with hypo you tend to gain

weight or to have problems losing weight. That's IMHO because your

metabolism is lowered and you burn fewer calories in just maintaining

your life processes.

,

That's why it was so important for me to know I have Hashimoto's. Because of

the swings from hypo to hyper, there can be weight loss. Also, I've read that

the multi-nodular goiter can also cause weight loss. The doctors didn't tell me

any of this, so because of the swelling on the sides of my neck, of course I

wondered if I might have Cancer. Thank God the biopsy came back benign.

" In our culture we males have tended to " talk down "

to women, even when we don't intend to do so; and further, when it is

totally unjustified. You may just have to put you foot down and insist

that you be an equal partner in your quest to find out what is going on

and to get the relief you need. "

WOW! It's big of you to admit that! It is something that I have experienced

many times, especially when having cars serviced through the years. I do put my

foot down, but many times have been laughed at. For some reason, certain

people think it's funny because I am 5'1 " , and through the years my weight has

varied from 94 to 118, with an average of 110. It's like a double whammy when

you're a woman and you're small too. LOL!

Barb

Re: More Numbers

Hi, Barb. I'll try to respond to some of your questions below; but as

always please remember I'm no expert on anything. Further, some of your

reactions give me cause to wonder if I even know what I thought I knew

about hypothyroidism...

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20More%20Numbers>

> westieabbey <westieabbey>

>

>

> Tue Jan 11, 2011 6:38 pm (PST)

>

>

>

> wrote:

>

> >Although serious pituitary

> >problems are IMHO pretty rare it probably would be a good idea to rule

> >them out as Chuck suggested if possible [given you unexpected responses

> >to T4].

>

> ,

>

> Thanks for answering. I'm glad to hear your problem was discovered and

> treated early. I just don't know what to think about mine. I seem to

> have symptoms of hyperthyroid too, and I know with Hashimoto's it can

> go back and forth between hypo and hyper. The doctor at Mayo Clinic

> was listening to my lungs, and said my heart rate was even going up

> when I took a deep breath. That's after I had been off medication for

> several weeks, with the exception of 5 days. The other strange thing

> is that since being diagnosed with Hypothyroidism in August, I was

> able to lose eight pounds quite easily. Then I thought at 110 pounds I

> was thin enough, so started eating more. I gained back a couple of

> pounds. However, it seems I can eat more than ever without gaining

> weight, and if I don't eat more than usual I will lose weight. Now

> that I know I have Hashimoto's I understand.

..

..

Easy weight loss with hypothyroidism typically just don't go together;

something else that confounds me. Usually with hypo you tend to gain

weight or to have problems losing weight. That's IMHO because your

metabolism is lowered and you burn fewer calories in just maintaining

your life processes. And in addition you're often feeling too tired or

unwell to exercise. I'm a bit heavy for 5'-11 " and 190 lbs but I eat

like a pig. My wife is horrified at the quantity of fat grams and

calories I consume; and frequently tells me so. I just laugh and tell

her our religions are different: I don't believe in fat grams and

calories! [ggg]

..

..

>

> Your suggestion about ruling out pituitary problems sounds good to me.

> I just don't know how to do that. What tests would be required?

..

..

In my case I had a second symptom of possible pituitary problem,

phantosmia. Hypothyroidism [or at least elevated TSH was the first]. I

asked my doctor and he ordered an MRI.

> Since my doctor didn't want to hear about anything I had read on the

> Internet,

..

..

Hopefully your doctor had in mind that much of the info on the internet

is pure bunk. A couple of possibilities are more troubling: If he just

doesn't want a well informed patient then to put it bluntly IMHO you

need another doctor. Another possibility is that he may have judged

that you don't have the necessary education or IQ to intelligently

discuss the issues. In our culture we males have tended to " talk down "

to women, even when we don't intend to do so; and further, when it is

totally unjustified. You may just have to put you foot down and insist

that you be an equal partner in your quest to find out what is going on

and to get the relief you need. If your doctor can't deal with that

then again IMHO you need another doctor.

..

..

> is aware of the TSH swings from high to low on very little medication,

> and doesn't recommend further testing, how do I tell him what to do?

> As has been mentioned here, sometimes they are pretty arrogant. Do you

> have any ideas? Also, if he thought it was a possibility that I could

> have those problems based on the test results and medications taken,

> why wouldn't he recommend it? Maybe for the same reason he didn't

> order an antibody test to check for Hashimoto's. It definitely makes a

> difference to know, because it helps me to understand what is going

> on. Why wouldn't the doctor at the Mayo Clinic recommend checking for

> pituitary problems? I asked him if he did testing for adrenal glands

> or anything else, and he said he didn't think that was necessary.

..

..

On the one hand we require doctors to make god-like life and death

decisions for ourselves and for those we love more than life. But they

are not gods; they're just human. And all humans make errors. Mistakes

can be very costly when health and life are the stakes. Most are

well-meaning, very intelligent [at least above average], hard working

and well educated. If you've actually encountered arrogance I'd be

looking elsewhere. But don't confuse the fact that Medicare probably

pays for about 5 minutes of your doctor's time for an office visit and

he HAS to see a LOT of patients if he is going to pay the expenses of

running his business; much less earn a salary.

And the paperwork is horrendous. And any decision made by the doctor

[tests, prescriptions] that are outside of " usual and customary " may be

questioned. One of my doctors showed me the folder he has had to

compile on me in his dealings with Medicare [This occurred after yet

another of the prescriptions he gave me was turned down by Medicare]. I

was astonished; frankly I suspect that the time needed to compile that

large folder was worth far more than Medicare paid him for all of my

many visits to that office.

But enough rambling. I guess it's enough for you to once again get the

idea that I don't really have a good answer for you. Probably your

doctor ordered what he felt was " reasonably necessary " .

..

..

>

> I did the underlining in the following excerpt. Most of you probably

> know these things, but I didn't before being diagnosed at the Mayo

> Clinic. That's because much of it is inconsistent with Hypothyroidism,

> which was the only diagnosis I had been given.

>

> " Hashimoto's typically involves a slow but steady destruction of the

> gland that eventually results in the thyroid's inability to produce

> sufficient thyroid hormone -- the condition known as hypothyroidism.

> Along the way, however, there can be periods where the thyroid

> sputters back to life, even causing temporary hyperthyroidism, then a

> return to hypothyroidism. This cycling back and forth between

> hypothyroidism and hyperthyroidism is characteristic of Hashimoto's

> disease. So, for example, periods of anxiety/insomnia/

> diarrhea/weight loss may be followed by periods of

> depression/fatigue/constipation/weight gain. In some cases, the onset

> of Hashimoto's and elevation of antibodies will be accompanied by a

> variety of symptoms, including anxiety, difficulty sleeping, fatigue,

> weight changes, depression, hair loss, muscle/joint aches and pains,

> and fertility problems, among others. "

>

> " He explains that just as arthritis attacks the joints with pain and

> inflammation, thyroiditis can mean pain and inflammation in the

> thyroid for some sufferers. And in particular, during a thyroiditis

> attack, common symptoms are anxiety, panic attacks, heart

> palpitations, swelling in the thyroid area, problems swallowing, and

> frequently, problems sleeping. "

>

> http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

> <http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm>

>

> Does anyone else but Ann live in FL? I'm just asking because being on

> Medicare seems to mean minimum testing and expense per patient here. I

> have secondary insurance with BCBS through AT & T, so don't understand

> the reluctance to do testing that helps diagnose illness. Everyone

> knows doctors are trying to cut Medicare expenses, but it not like I'm

> 90. I just turned 65.

..

..

I live in , which is near Tampa. I turn 70 tomorrow, Jan. 13th.

I've never experienced any problem at all in getting any tests needed;

and often I get tests that I wonder if I do need. It is actually in the

financial interests of the doctor to do more procedures and order more

tests because he then gets paid more. Yesterday I had a coronary stress

test and two of the tests where the machine goes from right to left as

it pauses 12 seconds every couple of inches for some kind of scan.

Since I have arrhythmia my cardiologists seems to want to keep a close

watch on things.

Best,

..

..

>

> Thanks for putting up with my ramblings.

>

> Barb

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That's a very small taste of rationing; although the Politically Correct

crowd who foisted it upon you will never call it that. If you think

it's bad now just wait until Obamadon'tcare gets into full swing and you

don't have any other choices.

Best,

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20More%20Numbers>

> westieabbey <westieabbey>

>

>

> Wed Jan 12, 2011 9:23 am (PST)

>

>

>

>

> Marla,

>

> Thanks. That could be the case. It's just not right that they can't

> wait to get you out of the office. There is one large medical group

> that has a monopoly in this city, and many of my friends 65 and over

> have experienced the same treatment. In fact, one who has friends

> within the system said they told her, the doctors were limiting

> appointments of Medicare patients to five minutes. Judging by my

> experience, that is exactly what they're doing.

>

> I'm still looking for sugestions on how to get them to do pituitary

> testing. Since the doctors don't suggest it with all the information

> they have, and some here think it's necessary or a good idea. The

> question is, do they think it's not necessary because for some reason

> they don't think I have a problem with that, or because they are

> cutting back on Medicare costs? I'd hate to think something would be

> overlooked because they are trying to cut costs.

>

> Barb

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ly I'm somewhat leery of someone who advertises that they treat

with bioidentical hormones; especially if they're treating

hypothyroidism. All of the T4 and T3 from any source is bioidentical,

so if they advertise that they using bioidentical T4/T3 while giving the

unspoken impression that others are not and are therefor inferior then

they are deliberately flying under false colors IMHO.

OTOH it makes sense to look for better answers when the ones you're

getting don't add up.

Best,

..

..

>

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20More%20Numbers>

> westieabbey <westieabbey>

>

>

> Wed Jan 12, 2011 9:49 am (PST)

>

>

>

>

> Marla,

>

> [...]

>

> I've thought about a holistic doctor, and am checking into that. There

> is one here who does bioidentical hormones, but it might be only for

> estrogen. I'm going to call her and a couple of other holistic doctors

> and see what I can find out. A D.O. is something I hadn't thought of,

> even thought I went to one years ago, and was happy with him. I

> understand what you're saying about the specialists.

>

> It is shocking that your endo refused to check your iron. Unbelievable!

>

> Thanks for your good wishes.

>

> Barb

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