Re: Just mildly Cusingoid ?

[Guest guest]

Well, if I remember correctly, if you *do* have an adrenal problem,

your thyroid problems can get worse without treating the adrenal

glands first. I may have read this in Thyroid Power by

Shames, but I'm not sure.

Also, if your TSH is 5.5, that is NOT normal. The newer ranges of

normal are much lower.

When I was first diagnosed with Hashi's (via antibodies blood tests)

my TSH was very normal. I asked the doctor if it would start

to " look " hyper and go really low if I started taking thyroid meds.

He said no, it will balance out. So, the fact that your TSH is

going up after taking meds could be because of the adrenal glands

needing treatment, but also your body just getting used to the meds

and needing even more.

Of course, this is just my opinion from my experiences. I am not a

medical person in any way!

Good luck.

Miaja**

>

> Greetings everyone!

>

> I have a follow-up appt with the endo today. Over the past 8 weeks

> here is what happend:

>

> symptomatic for Hashi's but normal tsh 5.5 range(0-5.5)

>

> go on 25mcg of levothyroxine

>

> 2 weeks later tsh 6.12 range (0-5.5)

>

> go on 50 mcg of levothyroxine

>

> 2 weeks later tsh 6.67 range (0-5.5)

>

> Free T3, Free T4, Total T3, Total T4 all mid range normal.

>

> today ut on 100mcgs of levothyroxine

>

> The doc also did exstensive tests on metabolic rate, insulin

> resistance, lipids, cortisol, free cortisol, testosterone....

>

> He said that the Free cortisol was mildly high which may mean a

> slight cushingoid presentation but that I didn't appear cushingoid

to

> him. He has asked me to collect another 24 hour urine in 6 weeks

time

> and come back. If the test is still high he will have a

dexamethasone

> suppression test ordered.

>

> I don't know much about cushings or the adrenals in general and I

am

> curious as to whether making me do the test again is what should

be

> done? He said that it might be my thyroid causing my adrenals to

> overproduce and not my adrenals or pituitary causing my thyroid to

> fail to respond to treatment.

>

> I looked at the symptoms for Cushng's Syndrome and I do have a lot

of

> them! So any advice on what I should be looking at or doing? So

far I

> really like this endo and I want to trust that he is going to nail

> this down but I am wary that I should educate myself that perhaps

if

> this is like Hashi's it is possible to have almost normal results

but

> still need treatment.

>

> Anyone know where I can get some answers?

>

[Guest guest]

Yeah, good point, Miaja. Beware of any endo. who

says 5.5 is within a normal range for TSH! The

American Endocrinology Assoc. changed that I think

a year ago now, so progressive endos are up on this

info., ones who care less about thyroid disease

aren't...

>

> Also, if your TSH is 5.5, that is NOT normal. The newer ranges of

> normal are much lower.

>

[Guest guest]

Just a clarification...

The GP said that it was symptomatic even though the TSH was in the

normal range which came from the lab 0-5.5...she definitely thought

there was something wrong and put me on meds and then sent me to

current endo who said my labs..by then 6.12 and now 6.67 were close to

myexedema for me. He told me to fill 100mcs right away and start taking

it today. I think they have a good handle on it but just worried that

like endos that ignore " mild " symptoms for Hashi's that they may ignore

borderline issues and symptoms of cushings because the level of

cortisol is not high enough.

jean

> >

> > Also, if your TSH is 5.5, that is NOT normal. The newer ranges of

> > normal are much lower.

> >

>

[Guest guest]

I posted a few weeks ago that my Free Cortisol was 35.9 and the normal range was under 45. I wondered if that still seemed in the high range. My Endo is totally blowing me off saying that now I have to go through my GP. I am so frustrated. I just keep gaining weight. I don't "feel" right. Tired etc I do have hashi's and am supposed to go back for a new blood test in a week. I have not heard of cusngoid. Is that mild cushings?Jean- Do you know what your Free Cortisol test results were? I would appreciate someone elses stats to see where I compare.Also, does anyone know of a good Endo in Atlanta? I am giving up on mine even though he is part of Emory. Thank youmargo

Get your email and more, right on the new Yahoo.com

[Guest guest]

Margo,

Should be Cushingoid, spelling error on my part. I have seemed to

have developed a problem with dyslexia lately and spelling errors

that I usually don't have.

Cushingoid is a phrase that means that either symptoms of cushings

exists but labs are normal or labs are abnormal but there are no

symptoms. I know that my Free Cortisol was 58, but I don't know the

range. Labs can range anywhere from 50 to 100 as their high side

depending on their lab. Since me endo was saying it was mild I would

hazard a guess that 50 was the upper limit.

The endo said he would send me a copy of his letter to my GP with all

the lab results in it.

>

> I posted a few weeks ago that my Free Cortisol was 35.9 and the

normal range was under 45. I wondered if that still seemed in the

high range. My Endo is totally blowing me off saying that now I have

to go through my GP. I am so frustrated. I just keep gaining

weight. I don't " feel " right. Tired etc I do have hashi's and am

supposed to go back for a new blood test in a week. I have not

heard of cusngoid. Is that mild cushings?

> Jean- Do you know what your Free Cortisol test results were? I

would appreciate someone elses stats to see where I compare.

>

> Also, does anyone know of a good Endo in Atlanta? I am giving up

on mine even though he is part of Emory.

>

> Thank you

> margo

>

>

>

>

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

> Get your email and more, right on the new Yahoo.com

>

[Guest guest]

Hi

Has the Endo ordered simple x-rays of your Adrenals or Pituitary?

I'll tell you what I know about the Cushing's tests. The 24 hour

urine is worthless in my opinion because you don't know when the

levels are high. In my case, I have extremely low morning and noon

cortisol with elevated afternoon, evening and midnight levels –the

evening levels are exceedingly high. Three Endos diagnosed me with

Cushing's using the 24 hour urine tests alone. I don't have

Cushing's.

If AM cortisol test or the cortisol free test is elevated you need

the cortisol measured with a dexamethasone suppression test. (If it

comes back normal, get an ASI saliva cortisol test. Also, is it

surprising that both my dex tests were super low and suppressed.)

If the Dex test is also elevated then you have Cushing's and your

Endo should do tests and scans on your pituitary and adrenal glands

to see if you have a tumor if you are not taking steroids. Also, a

CRH Stimulation Test can help to determine if it is the Adrenals or

Pituitary

BTW, I don't mean to make short of your problem, but Myxedema is

life threatening and a very serious condition that I have

experienced. I know if you can still post on this board you have

quite a ways to go before you are in life threatening danger. If you

were close to Myxedema you would not be able to get out of bed,

stand, hold a glass of water, much less operate a computer or type.

An Endo or Dr. who uses TSH levels as an indicator would be fired.

Myxedema happens when your Thyroid hormone levels become almost

nonexistence. The organs begin to shut down usually the kidneys

first and eventually your brain; you become a vegetable, as you

cannot tell the people around how you feel. I was lucky before I

went into a coma because I kept telling my son Free t4 Fre t3 and he

wrote it down –they checked them and found .01 FT3 and slightly

higher FT4 .03. I still think that he saved my life and he was only

five years old at the time.

Perhaps you may understand, at least to some extent, why I am Endo-

phobia as the Endo's took away half my Armour bases on my TSH level

and within seven weeks, I had developed Myxedema in 2003. It does

happen gradually and then when it becomes critical it is quite fast.

Regards,

BJ

> >

> > I posted a few weeks ago that my Free Cortisol was 35.9 and the

> normal range was under 45. I wondered if that still seemed in the

> high range. My Endo is totally blowing me off saying that now I

have

> to go through my GP. I am so frustrated. I just keep gaining

> weight. I don't " feel " right. Tired etc I do have hashi's and am

> supposed to go back for a new blood test in a week. I have not

> heard of cusngoid. Is that mild cushings?

> > Jean- Do you know what your Free Cortisol test results were? I

> would appreciate someone elses stats to see where I compare.

> >

> > Also, does anyone know of a good Endo in Atlanta? I am giving up

> on mine even though he is part of Emory.

> >

> > Thank you

> > margo

> >

> >

> >

> >

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

> > Get your email and more, right on the new Yahoo.com

> >

>

[Guest guest]

Thanks for the info Margo,

I have wondered about the 24 urine thing, but the free cortisol was

also elevated (the one he did by drawing blood). He also did a one

time urine test on urine I gave at the time of the visit and it had

high coritsol. He hasn't ordered any films or ultrasounds. He wants

to treat the thyroid first and see if the sever hypothyroidism is

causing the spike in cortisol production so he is repeating the 24

urine in 6 weeks aftering increasing synthroid to 100mcgs.

I am definitely not angling to have any illness or disease that I

don't have, I am trying to adequately deal with what I do have. I

don't like being told that I have a " mild case of " . In my opinion

either I do or I don't. I have gone through numerous endos myself

since age 8. It took until I was 21 and in bed unable to go to class

or work and threatening a law suit before I finally got someone to

diagnose hypothyroidism. It took until I was 30 to diagnose Hashi's.

In between my thyroid has bounced all over the place and I have NEVER

gone more than 3 months without needing to modify my synthroid intake

up or down.

As for the myxedema, it is a very severe issue and effects people

differently. My most severe case as noted above was at 21 when I

couldn't even get out of bed. This time I was at a stage where my

renal and nephrological studies (kidneys and liver) were showing

dysfunction as well as heart palpitations that put me on toprol xl.

Without knowing me personally it is not easy to judge how much I have

changed even in my ability to write a post. It might look decent but

I spend a LONG time rereading it and fixing the grammar and dyslexic

spelling and sentences where I make no good sense. (It ook me 35

minutes to right this post).

I am tired and frustrated like the rest of you. I have gained 35

pounds and am now gaining at a rate of 2.5 pounds a week. I have

developed muscle weakness and problems with vertigo and eye focus.

This led to a bad fall a week ago and I fractured my saccral spine.

Now even though I used to be a runner, I can't even get out and walk!

I just want to try and understand what else may be affecting my

thyroid function because I don't want to spend years hearing

about " borderline " test results and maybe this and maybe that while

my life spirals out of control. I have no intention of having a post

match over who has the most severe condition of all of us or who had

it worse or who has it easy compared to anyone else. We all have very

different struggles but we share a common disease.

jean

> > >

> > > I posted a few weeks ago that my Free Cortisol was 35.9 and the

> > normal range was under 45. I wondered if that still seemed in the

> > high range. My Endo is totally blowing me off saying that now I

> have

> > to go through my GP. I am so frustrated. I just keep gaining

> > weight. I don't " feel " right. Tired etc I do have hashi's and

am

> > supposed to go back for a new blood test in a week. I have not

> > heard of cusngoid. Is that mild cushings?

> > > Jean- Do you know what your Free Cortisol test results were? I

> > would appreciate someone elses stats to see where I compare.

> > >

> > > Also, does anyone know of a good Endo in Atlanta? I am giving

up

> > on mine even though he is part of Emory.

> > >

> > > Thank you

> > > margo

> > >

> > >

> > >

> > >

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

> > > Get your email and more, right on the new Yahoo.com

> > >

> >

>

[Guest guest]

Hi interesting you mentioning dyslexic too, I suffer to some degree with that. I had my test done in April which was low thyroid wise, but am due for some more blood test this week. You also mention eye focus, I have a problem with that but only when I have a head ache. I do have days when it is hard for me to carry on, tiredness, fatigue, my twin sister is the same as me so we do get to chat about it. I mean I can plan to do something the following day and find I am unable to do so. Frustrating! But sometimes it is self inflicked, like using a massage pad laying upon my tummy with my neck at an angle. Didn't agree with me at all, headache the next day so lean some other way to do it with the handpiece instead. My brother brought over a exercise

bike he didn't need, it has the arms as well but will wait until I am assessed at the Gym for the Program that which I can handle. Can peddle no problem that way. Yes my muscle tone is bad which is why I need to do something as well as the lungs too, soccering the ball around with Benji my dog will help. We live on a hill, so get to pant some which is good for the lungs and heart too. Hoping to up the medication this time a little more. . jipfbutter wrote: Thanks for the info Margo,I have wondered about the 24 urine thing, but the free cortisol was also elevated (the one he did by drawing blood). He also did a one time urine test on urine I gave at the time of the visit and it had high coritsol. He hasn't ordered any films or ultrasounds. He wants to treat the thyroid first and see if the sever hypothyroidism is causing the spike in cortisol production so he is repeating the 24 urine in 6 weeks aftering increasing synthroid to 100mcgs.I am definitely not angling to have any illness or disease that I don't have, I am trying to adequately deal with what I do have. I don't like being told that I have a "mild case of". In my opinion either I do or I don't. I have gone through numerous

endos myself since age 8. It took until I was 21 and in bed unable to go to class or work and threatening a law suit before I finally got someone to diagnose hypothyroidism. It took until I was 30 to diagnose Hashi's. In between my thyroid has bounced all over the place and I have NEVER gone more than 3 months without needing to modify my synthroid intake up or down.As for the myxedema, it is a very severe issue and effects people differently. My most severe case as noted above was at 21 when I couldn't even get out of bed. This time I was at a stage where my renal and nephrological studies (kidneys and liver) were showing dysfunction as well as heart palpitations that put me on toprol xl. Without knowing me personally it is not easy to judge how much I have changed even in my ability to write a post. It might look decent but I spend a LONG time rereading it and fixing the grammar and dyslexic spelling and

sentences where I make no good sense. (It ook me 35 minutes to right this post).I am tired and frustrated like the rest of you. I have gained 35 pounds and am now gaining at a rate of 2.5 pounds a week. I have developed muscle weakness and problems with vertigo and eye focus. This led to a bad fall a week ago and I fractured my saccral spine. Now even though I used to be a runner, I can't even get out and walk!I just want to try and understand what else may be affecting my thyroid function because I don't want to spend years hearing about "borderline" test results and maybe this and maybe that while my life spirals out of control. I have no intention of having a post match over who has the most severe condition of all of us or who had it worse or who has it easy compared to anyone else. We all have very different struggles but we share a common disease. jean> > >> > > I posted a few weeks ago that my Free Cortisol was 35.9 and the > > normal range was under 45. I wondered if that still seemed in the > > high range. My Endo is totally blowing me off saying that now I > have > > to go through my GP. I am so frustrated. I just keep gaining > > weight. I don't "feel" right. Tired etc I do have hashi's and am > > supposed to go back for a new blood test in a week. I have not > > heard of cusngoid. Is that mild cushings?> > > Jean- Do you know what your Free Cortisol test results were? I > > would appreciate someone elses stats to see where I compare.> > > > > >

Also, does anyone know of a good Endo in Atlanta? I am giving up > > on mine even though he is part of Emory. > > > > > > Thank you> > > margo> > > > > > > > > > > > > > > ---------------------------------> > > Get your email and more, right on the new Yahoo.com> > >> >>Peace be with you, But joy comes in the morning.

On Yahoo!7 Coming soon: Celebrity Survivor - 11 celebrities, 25 days, unlimited drama

[Guest guest]

Hi

I think it was me that you were responding to. From experience and

research, severe HypoT depletes Adrenal function causing Adrenal

fatigue or 's. Trying to fix the Thyroid first may be a

mistake. I would want a second opinion at least for the Cushing's

aspect; you may have a tumor on your Pituitary or Adrenal gland –both

should be ruled out.

It sounds like you have truly been through the ringer, so to speak,

with all the unfortunate medical issues. I can relate with looking

for a diagnosis and going to ineffectual and biased dr's repeatedly

and I too for over ten years got a different script every 6-8 weeks.

I am sure none of us want to be sick, and am glad there are sites

such as this for support.

I apologize if my explanation of Myxedema confused you and please

know I was satirizing your post. I have a son that has Hashi's and

his main symptoms are ADD and Dyslexia, he was born 14 weeks early,

which contributes to them as well. Sometimes with written words,

one's intention cannot be deciphered and since no two minds work

alike interpretation can be quite different. Sorry for the

misunderstanding. Hopefully, this will explain it a bit better.

What I meant was when I had it (Myxedema) I had no energy to get out

of bed and could not get to my computer or even type, I could not

hold a glass of water without dropping it. I am sure you are right

that there can be various forms. Plus, I also thought your doc said

that you have Myxedema based upon your TSH level.

The weight gain, muscle and spine weakness indicate a closer look at

Cushing's and Vertigo implies Adrenal dysfunction. Are your eyes

puffy?

You may have already considered this, it came to mind when I read

your debilitating problems. What kind of diet are you on. Wheat

intolerance can do awful things to anyone who is intolerable

including causing whole body and immense organ problems. Doctor's

for years excused my quest for Hashi causes and even told me diet had

nothing to do with it, well for me diet has everything to do with it.

I came across an article Gluten Intolerance on 's about.com site

and kept it. Here is a expert of it.

" " We believe that undiagnosed celiac disease can cause other

disorders by switching on some as yet unknown immunological

mechanism. Untreated celiac patients produce organ-specific

autoantibodies. "

http://www.thyroid-info.com/articles/glutenceliac.htm

I feel badly that you got the wrong idea about what I was trying to

say. And, I do hope you find an answer to your multiple problems.

Keep looking! Everyone deserves to be get to the bottom of their

health issues and deserves good medical treatment along the way.

Bottom line, I encourage you to get a second opinion and at least an

x-ray of your Pituitary and Adrenal glands, although scans could rule

out or even put new light on your high cortisol problem.

Best,

BJ

> > > >

> > > > I posted a few weeks ago that my Free Cortisol was 35.9 and

the

> > > normal range was under 45. I wondered if that still seemed in

the

> > > high range. My Endo is totally blowing me off saying that now

I

> > have

> > > to go through my GP. I am so frustrated. I just keep gaining

> > > weight. I don't " feel " right. Tired etc I do have hashi's

and

> am

> > > supposed to go back for a new blood test in a week. I have

not

> > > heard of cusngoid. Is that mild cushings?

> > > > Jean- Do you know what your Free Cortisol test results were?

I

> > > would appreciate someone elses stats to see where I compare.

> > > >

> > > > Also, does anyone know of a good Endo in Atlanta? I am

giving

> up

> > > on mine even though he is part of Emory.

> > > >

> > > > Thank you

> > > > margo

> > > >

> > > >

> > > >

> > > >

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

> > > > Get your email and more, right on the new Yahoo.com

> > > >

> > >

> >

>

[Guest guest]

Yes, It was you bj,

Again with the dyslexia, focus problem thing.

I am just trying to understand it all. I am frustrated

with the constant maybe this maybe that and then

having to wait 6 more weeks. Just in this past 2 weeks

I have gained 10lbs!The doctor was very worried that

even though we continue to up my medication i am

becoming more hypotyroid and gaiing weight so quickly

even though I watch my diet and walk 6 miles a day.

I have been a low glycemic index diet that seems to

work well for me when Hashi is not being a gremlin. My

old endo and I tried low/no gluten as well but that

didn't really make a difference. I liked him but he

worried so much about my severe upswings to

hyperthyroid where my tsh would become untraceable

that he was unwilling to medicated unless the labs

were above 11. He agrees with treating for symptoms as

well but it is hard to convince him that you are

symptomatic until he sees it for himself. My new endo

started our first appt by asking me how I felt and

what I thought that my body was doing and then asked

me why I thought so. He took a lot of notes.

The new endo is also right that in part my current

severe symotoms are my fault as well. The reason being

that I have been back and forth to my GP since October

last year watching my symptoms. She thought I should

go on meds then but my last episodic event was so

severly hyperthyroid that my TSH was untraceble on no

meds for 8 months! I almost had a heart attack with my

resting heart rate at 138bpm. I was really scared to

go on synthroid again.

I have an appointment with a neurologist in 2 weeks

and I am hpoing to convince her to order an MRI of my

brain. I have done some reading and I have heard that

with cushings caused by pituitary tumor, the tumor can

only be seen on MRI or CT scan film 50% of the time.

I'm not sure but it is worth a try anyways. The endo

says he will do the dexamethasone test if the second

24 hr urine is high and if that test is also high he

will do x-rays.

I am just frazzled to my very last nerve with

constantly having to wait weeks upon weeks for

answers. My hair is falling out, I have uticaria

(hives and sores) all over my face and body and with

the weight gain I can't bear to look in the mirror.

I am an avid runner and I have been slowed to walking

instead of running and ove rthe last 4 weeks I haven't

even been able to get out to do that and now with

broken lower back...on bedrest. Do doctors realize

what they put us through when we feel like this and

they say.. " Come back in 6 weeks? "

grrrr

Don't worry BJ, While I definitely speak my mind, I am

open hearted and minded gal and I was just expressing

myself, and yes definitely a misunderstanding, but i

was not offended. )

jean

--- beckyjov wrote:

> Hi

>

> I think it was me that you were responding to. From

> experience and

> research, severe HypoT depletes Adrenal function

> causing Adrenal

> fatigue or 's. Trying to fix the Thyroid

> first may be a

> mistake. I would want a second opinion at least for

> the Cushing's

> aspect; you may have a tumor on your Pituitary or

> Adrenal gland –both

> should be ruled out.

>

> It sounds like you have truly been through the

> ringer, so to speak,

> with all the unfortunate medical issues. I can

> relate with looking

> for a diagnosis and going to ineffectual and biased

> dr's repeatedly

> and I too for over ten years got a different script

> every 6-8 weeks.

> I am sure none of us want to be sick, and am glad

> there are sites

> such as this for support.

>

> I apologize if my explanation of Myxedema confused

> you and please

> know I was satirizing your post. I have a son that

> has Hashi's and

> his main symptoms are ADD and Dyslexia, he was born

> 14 weeks early,

> which contributes to them as well. Sometimes with

> written words,

> one's intention cannot be deciphered and since no

> two minds work

> alike interpretation can be quite different. Sorry

> for the

> misunderstanding. Hopefully, this will explain it a

> bit better.

> What I meant was when I had it (Myxedema) I had no

> energy to get out

> of bed and could not get to my computer or even

> type, I could not

> hold a glass of water without dropping it. I am

> sure you are right

> that there can be various forms. Plus, I also

> thought your doc said

> that you have Myxedema based upon your TSH level.

>

> The weight gain, muscle and spine weakness indicate

> a closer look at

> Cushing's and Vertigo implies Adrenal dysfunction.

> Are your eyes

> puffy?

>

> You may have already considered this, it came to

> mind when I read

> your debilitating problems. What kind of diet are

> you on. Wheat

> intolerance can do awful things to anyone who is

> intolerable

> including causing whole body and immense organ

> problems. Doctor's

> for years excused my quest for Hashi causes and even

> told me diet had

> nothing to do with it, well for me diet has

> everything to do with it.

>

> I came across an article Gluten Intolerance on

> 's about.com site

> and kept it. Here is a expert of it.

>

>

> " " We believe that undiagnosed celiac disease can

> cause other

> disorders by switching on some as yet unknown

> immunological

> mechanism. Untreated celiac patients produce

> organ-specific

> autoantibodies. "

>

>

http://www.thyroid-info.com/articles/glutenceliac.htm

>

>

> I feel badly that you got the wrong idea about what

> I was trying to

> say. And, I do hope you find an answer to your

> multiple problems.

> Keep looking! Everyone deserves to be get to the

> bottom of their

> health issues and deserves good medical treatment

> along the way.

>

> Bottom line, I encourage you to get a second opinion

> and at least an

> x-ray of your Pituitary and Adrenal glands, although

> scans could rule

> out or even put new light on your high cortisol

> problem.

>

> Best,

> BJ

>

>

>

>

>

>

> >

> > Thanks for the info Margo,

> >

> > I have wondered about the 24 urine thing, but the

> free cortisol was

> > also elevated (the one he did by drawing blood).

> He also did a one

> > time urine test on urine I gave at the time of the

> visit and it had

> > high coritsol. He hasn't ordered any films or

> ultrasounds. He wants

> > to treat the thyroid first and see if the sever

> hypothyroidism is

> > causing the spike in cortisol production so he is

> repeating the 24

> > urine in 6 weeks aftering increasing synthroid to

> 100mcgs.

> >

> > I am definitely not angling to have any illness or

> disease that I

> > don't have, I am trying to adequately deal with

> what I do have. I

> > don't like being told that I have a " mild case

> of " . In my opinion

> > either I do or I don't. I have gone through

> numerous endos myself

> > since age 8. It took until I was 21 and in bed

> unable to go to

> class

> > or work and threatening a law suit before I

> finally got someone to

> > diagnose hypothyroidism. It took until I was 30 to

> diagnose

> Hashi's.

> > In between my thyroid has bounced all over the

> place and I have

> NEVER

> > gone more than 3 months without needing to modify

> my synthroid

> intake

> > up or down.

> >

> > As for the myxedema, it is a very severe issue and

> effects people

> > differently. My most severe case as noted above

> was at 21 when I

> > couldn't even get out of bed. This time I was at a

> stage where my

> > renal and nephrological studies (kidneys and

> liver) were showing

> > dysfunction as well as heart palpitations that put

> me on toprol xl.

> > Without knowing me personally it is not easy to

> judge how much I

> have

> > changed even in my ability to write a post. It

> might look decent

> but

> > I spend a LONG time rereading it and fixing the

> grammar and

> dyslexic

> > spelling and sentences where I make no good sense.

> (It ook me 35

> > minutes to right this post).

> >

> > I am tired and frustrated like the rest of you. I

> have gained 35

> > pounds and am now gaining at a rate of 2.5 pounds

> a week. I have

> > developed muscle weakness and problems with

> vertigo and eye focus.

> > This led to a bad fall a week ago and I fractured

> my saccral spine.

> > Now even though I used to be a runner, I can't

> even get out and

> walk!

> >

> > I just want to try and understand what else may be

> affecting my

> > thyroid function because I don't want to spend

> years hearing

> > about " borderline " test results and maybe this and

> maybe that while

> > my life spirals out of control. I have no

> intention of having a

> post

> > match over who has the most severe condition of

> all of us or who

> had

> > it worse or who has it easy compared to anyone

> else.

=== message truncated ===

__________________________________________________

[Guest guest]

OOPS! SORRY! EXCUSE ME! I meant to write:

please know I was " NOT " satirizing your post. Guess I need to do a

better job at proof reading...

BJ

> > > > >

> > > > > I posted a few weeks ago that my Free Cortisol was 35.9 and

> the

> > > > normal range was under 45. I wondered if that still seemed in

> the

> > > > high range. My Endo is totally blowing me off saying that

now

> I

> > > have

> > > > to go through my GP. I am so frustrated. I just keep

gaining

> > > > weight. I don't " feel " right. Tired etc I do have hashi's

> and

> > am

> > > > supposed to go back for a new blood test in a week. I have

> not

> > > > heard of cusngoid. Is that mild cushings?

> > > > > Jean- Do you know what your Free Cortisol test results

were?

> I

> > > > would appreciate someone elses stats to see where I compare.

> > > > >

> > > > > Also, does anyone know of a good Endo in Atlanta? I am

> giving

> > up

> > > > on mine even though he is part of Emory.

> > > > >

> > > > > Thank you

> > > > > margo

> > > > >

> > > > >

> > > > >

> > > > >

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

> > > > > Get your email and more, right on the new Yahoo.com

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Thanks for the reply. I wonder too why the Endo wants to wait so

long as you definitely have symptoms that indicates looking at

Cushing's further and ASAP. And, know how frustrating it can be

having to wait and see. I really don't understand the attitude the

Endo has knowing your serious problems –especially your spine as well

as you mentioned that you are taking more meds, but feeling worse –

What meds are you currently on?

I am glad you have looked at the Gluten possibility. Were the hyper

swings by TSH alone or did you have symptoms also. You sound like

you have low TSH problems too. How low does your TSH go on T meds?

When you say untraceable TSH, what do you mean? Is it zero? Mine

went as low as –1.04, which my dr's said was Hyper or Graves, but I

never had a fast heart rate or any other symptoms like nervousness or

jitters, weight loss, etc.

I assume you were on Synthroid when you almost had a heart attach.

Correct? That would scare anyone. Have you seen a Cardiologist

about the heart issues? My daughter has both Graves and Hashi AB's

with a low TSH and low FT4, below range, but her FT3 is high, over

the range. She takes supplements and meds for both Anti-Thyroid and

Thyroid hormone and a heart med to stabilize and slow down her heart

rate. Perhaps with your severe problems, this could be an

option.

Also, not everyone can take Synthroid I got worst symptoms – swelling

like a balloon, hives, achy all over and could hardly function and a

fast heart rate on it. Not sure why I got worst, but assume it was

the binders, fillers or dyes. And my hair fell out by the hand

full. Levoxyl caused swelling and racing heart too. I can take

Levothroid and Unithroid with no problems, but am on Armour for low

FT3 levels as Cytomel and compounded slow-release T3 didn't agree

with me. You sound like you need immediate attention. Has anyone

ruled out the Synthroid as the cause of the hives or rashes?

IMHO, you should NOT have to wait for two 24 hour urines weeks apart

to be high. So glad the Neurologist may be able to speed things up a

bit. Do you see her for your back? From what I know, the MRI is

a much better test for finding a Pituitary tumor and it doesn't take

long either. Practice your persuasion skills on a speech at home in

front of a mirror or a friend –it always helps to be prepared. Do

you have more Cushing's symptoms? If so relate that to her as well

it may help get the MRI sooner.

You sound like you are drained and exhausted. Hang in there, I know

it isn't easy. I can feel the pain and frustration in your words.

Do you have family nearby? What area do you live in? Hopefully,

you will get the needed answer soon. I hope I didn't add to your

already overloaded amount of stress. Hang in there.

Hugs,

BJ

>

> Yes, It was you bj,

>

> Again with the dyslexia, focus problem thing.

>

> I am just trying to understand it all. I am frustrated

> with the constant maybe this maybe that and then

> having to wait 6 more weeks. Just in this past 2 weeks

> I have gained 10lbs!The doctor was very worried that

> even though we continue to up my medication i am

> becoming more hypotyroid and gaiing weight so quickly

> even though I watch my diet and walk 6 miles a day.

>

> I have been a low glycemic index diet that seems to

> work well for me when Hashi is not being a gremlin. My

> old endo and I tried low/no gluten as well but that

> didn't really make a difference. I liked him but he

> worried so much about my severe upswings to

> hyperthyroid where my tsh would become untraceable

> that he was unwilling to medicated unless the labs

> were above 11. He agrees with treating for symptoms as

> well but it is hard to convince him that you are

> symptomatic until he sees it for himself. My new endo

> started our first appt by asking me how I felt and

> what I thought that my body was doing and then asked

> me why I thought so. He took a lot of notes.

>

> The new endo is also right that in part my current

> severe symotoms are my fault as well. The reason being

> that I have been back and forth to my GP since October

> last year watching my symptoms. She thought I should

> go on meds then but my last episodic event was so

> severly hyperthyroid that my TSH was untraceble on no

> meds for 8 months! I almost had a heart attack with my

> resting heart rate at 138bpm. I was really scared to

> go on synthroid again.

>

> I have an appointment with a neurologist in 2 weeks

> and I am hpoing to convince her to order an MRI of my

> brain. I have done some reading and I have heard that

> with cushings caused by pituitary tumor, the tumor can

> only be seen on MRI or CT scan film 50% of the time.

> I'm not sure but it is worth a try anyways. The endo

> says he will do the dexamethasone test if the second

> 24 hr urine is high and if that test is also high he

> will do x-rays.

>

> I am just frazzled to my very last nerve with

> constantly having to wait weeks upon weeks for

> answers. My hair is falling out, I have uticaria

> (hives and sores) all over my face and body and with

> the weight gain I can't bear to look in the mirror.

>

> I am an avid runner and I have been slowed to walking

> instead of running and ove rthe last 4 weeks I haven't

> even been able to get out to do that and now with

> broken lower back...on bedrest. Do doctors realize

> what they put us through when we feel like this and

> they say.. " Come back in 6 weeks? "

>

> grrrr

>

> Don't worry BJ, While I definitely speak my mind, I am

> open hearted and minded gal and I was just expressing

> myself, and yes definitely a misunderstanding, but i

> was not offended. )

>

> jean

[Guest guest]

BJ,

The endo's explanation is that perhaps the hypoT is causing the

cortisol to be high, but as you stated before I always thought it was

the other way around. That it would suppress the adrenals. So if my

thyroid was normal then wouldn't the cortisol be higher? He wants me

to wait 6 weeks to let the new does of meds take effect. I am now on

100mcgs but my tsh keeps going up.

With the upswings, when my tsh was untraceable I was always told that

there was nothing lower than 0 and that when they say untraceable

rather than 0 it means they couldn't find anything to measure. My

symptoms were anxiety, tremors of the hands, heart palpitationsa nd

arrythmia, weight loss. I am on Toprol XL for the heart. I had a

complete cardiology work-up on my heart a year ago with only minimal

issues in regards to function. It was nothing more than a murmur I

have always had. I am like your daughter, when my tsh was untraceable

my T3 was 3 times normal range. Currently my T3 an T4 are both mid-

range.

I don't know what any of this means and am getting to the point where

I amseriously considering trying to get in with that dr. Suuzin was

talking about in SD and going to see him. I actually live in VA but

it would be worth the trip. I live in VA alone, my family is all in

Michigan. my sister tried to get Family Medical Leave Act time to

come help me because I am on bed rest and honestly even before the

injury I was having a hard time getting things taken care of like

paying bills and cleaning. I could barely get my work done for work.

Thank goodness I work from home or I would have lost my job by now I

am sure!

I just want someone to fix me, nothing else more or less. I am

thinking about going back to school and getting a medical degree of

my own. I studied pre-med for 2 1/2 years before switching majors and

getting a degree in another field. I have definite symptoms of

cushings including fatigue, skin thinning and tearing, uticaria,

purple striae on my thighs and abdomen, skin that doesn't heal,

extremem thirst and polyuria(going to the bathroom all the time). I

complained of these symptoms the last major episode I had with

hashi's 6 years ago and the free cortisol and dhea and acth were all

more than twice the normal in the first test and then when she tested

me again a few days later it was normal and the CT scan of my brain

was normal so she did not pursue it further. Of course this same endo

missed the hashi's diagnosis and the polycystic ovaries issue

connected to hashi's.

At this point I have reserached a lot and there are just so many

conflicting points of view on hashi's, thyroid disease and cushings

that it is hard to tell. Some say the 24 hr Urine is the most

accurate test and others say what you did about the saliva test being

more relaible because of the changes of Cortisol levels.

Guess I just have to hang in there for the endo and ask for the MRI.

Honestly with my issue with my legs giving out, vertigo, vision

issues, tinnitis and wierd headaches that I haven't had before until

the last few months, I think the clinical presentation should be

enough to warrant the MRI.

I'll keep you updated

jean

> >

> > Yes, It was you bj,

> >

> > Again with the dyslexia, focus problem thing.

> >

> > I am just trying to understand it all. I am frustrated

> > with the constant maybe this maybe that and then

> > having to wait 6 more weeks. Just in this past 2 weeks

> > I have gained 10lbs!The doctor was very worried that

> > even though we continue to up my medication i am

> > becoming more hypotyroid and gaiing weight so quickly

> > even though I watch my diet and walk 6 miles a day.

> >

> > I have been a low glycemic index diet that seems to

> > work well for me when Hashi is not being a gremlin. My

> > old endo and I tried low/no gluten as well but that

> > didn't really make a difference. I liked him but he

> > worried so much about my severe upswings to

> > hyperthyroid where my tsh would become untraceable

> > that he was unwilling to medicated unless the labs

> > were above 11. He agrees with treating for symptoms as

> > well but it is hard to convince him that you are

> > symptomatic until he sees it for himself. My new endo

> > started our first appt by asking me how I felt and

> > what I thought that my body was doing and then asked

> > me why I thought so. He took a lot of notes.

> >

> > The new endo is also right that in part my current

> > severe symotoms are my fault as well. The reason being

> > that I have been back and forth to my GP since October

> > last year watching my symptoms. She thought I should

> > go on meds then but my last episodic event was so

> > severly hyperthyroid that my TSH was untraceble on no

> > meds for 8 months! I almost had a heart attack with my

> > resting heart rate at 138bpm. I was really scared to

> > go on synthroid again.

> >

> > I have an appointment with a neurologist in 2 weeks

> > and I am hpoing to convince her to order an MRI of my

> > brain. I have done some reading and I have heard that

> > with cushings caused by pituitary tumor, the tumor can

> > only be seen on MRI or CT scan film 50% of the time.

> > I'm not sure but it is worth a try anyways. The endo

> > says he will do the dexamethasone test if the second

> > 24 hr urine is high and if that test is also high he

> > will do x-rays.

> >

> > I am just frazzled to my very last nerve with

> > constantly having to wait weeks upon weeks for

> > answers. My hair is falling out, I have uticaria

> > (hives and sores) all over my face and body and with

> > the weight gain I can't bear to look in the mirror.

> >

> > I am an avid runner and I have been slowed to walking

> > instead of running and ove rthe last 4 weeks I haven't

> > even been able to get out to do that and now with

> > broken lower back...on bedrest. Do doctors realize

> > what they put us through when we feel like this and

> > they say.. " Come back in 6 weeks? "

> >

> > grrrr

> >

> > Don't worry BJ, While I definitely speak my mind, I am

> > open hearted and minded gal and I was just expressing

> > myself, and yes definitely a misunderstanding, but i

> > was not offended. )

> >

> > jean

>

[Guest guest]

Hi, I've been watching....forget the computer word....and was wondering how HT affects y'alls periods? Mine was gone for 3 yrs after my 2nd child then started back for 3-4 months which coincidentally happened after gallbladder surgery and has been the only time I've felt good too then it stopped again and I feel bad and symptoms are coming back.

-- Re: Just mildly Cusingoid ?

BJ,The endo's explanation is that perhaps the hypoT is causing the cortisol to be high, but as you stated before I always thought it was the other way around. That it would suppress the adrenals. So if my thyroid was normal then wouldn't the cortisol be higher? He wants me to wait 6 weeks to let the new does of meds take effect. I am now on 100mcgs but my tsh keeps going up. With the upswings, when my tsh was untraceable I was always told that there was nothing lower than 0 and that when they say untraceable rather than 0 it means they couldn't find anything to measure. My symptoms were anxiety, tremors of the hands, heart palpitationsa nd arrythmia, weight loss. I am on Toprol XL for the heart. I had a complete cardiology work-up on my heart a year ago with only minimal issues in regards to function. It was nothing more than a murmur I have always had. I am like your daughter, when my tsh was untraceable my T3 was 3 times normal range. Currently my T3 an T4 are both mid-range.I don't know what any of this means and am getting to the point where I amseriously considering trying to get in with that dr. Suuzin was talking about in SD and going to see him. I actually live in VA but it would be worth the trip. I live in VA alone, my family is all in Michigan. my sister tried to get Family Medical Leave Act time to come help me because I am on bed rest and honestly even before the injury I was having a hard time getting things taken care of like paying bills and cleaning. I could barely get my work done for work. Thank goodness I work from home or I would have lost my job by now I am sure!I just want someone to fix me, nothing else more or less. I am thinking about going back to school and getting a medical degree of my own. I studied pre-med for 2 1/2 years before switching majors and getting a degree in another field. I have definite symptoms of cushings including fatigue, skin thinning and tearing, uticaria, purple striae on my thighs and abdomen, skin that doesn't heal, extremem thirst and polyuria(going to the bathroom all the time). I complained of these symptoms the last major episode I had with hashi's 6 years ago and the free cortisol and dhea and acth were all more than twice the normal in the first test and then when she tested me again a few days later it was normal and the CT scan of my brain was normal so she did not pursue it further. Of course this same endo missed the hashi's diagnosis and the polycystic ovaries issue connected to hashi's.At this point I have reserached a lot and there are just so many conflicting points of view on hashi's, thyroid disease and cushings that it is hard to tell. Some say the 24 hr Urine is the most accurate test and others say what you did about the saliva test being more relaible because of the changes of Cortisol levels. Guess I just have to hang in there for the endo and ask for the MRI. Honestly with my issue with my legs giving out, vertigo, vision issues, tinnitis and wierd headaches that I haven't had before until the last few months, I think the clinical presentation should be enough to warrant the MRI.I'll keep you updatedjean> >> > Yes, It was you bj,> > > > Again with the dyslexia, focus problem thing.> > > > I am just trying to understand it all. I am frustrated> > with the constant maybe this maybe that and then> > having to wait 6 more weeks. Just in this past 2 weeks> > I have gained 10lbs!The doctor was very worried that> > even though we continue to up my medication i am> > becoming more hypotyroid and gaiing weight so quickly> > even though I watch my diet and walk 6 miles a day.> > > > I have been a low glycemic index diet that seems to> > work well for me when Hashi is not being a gremlin. My> > old endo and I tried low/no gluten as well but that> > didn't really make a difference. I liked him but he> > worried so much about my severe upswings to> > hyperthyroid where my tsh would become untraceable> > that he was unwilling to medicated unless the labs> > were above 11. He agrees with treating for symptoms as> > well but it is hard to convince him that you are> > symptomatic until he sees it for himself. My new endo> > started our first appt by asking me how I felt and> > what I thought that my body was doing and then asked> > me why I thought so. He took a lot of notes. > > > > The new endo is also right that in part my current> > severe symotoms are my fault as well. The reason being> > that I have been back and forth to my GP since October> > last year watching my symptoms. She thought I should> > go on meds then but my last episodic event was so> > severly hyperthyroid that my TSH was untraceble on no> > meds for 8 months! I almost had a heart attack with my> > resting heart rate at 138bpm. I was really scared to> > go on synthroid again.> > > > I have an appointment with a neurologist in 2 weeks> > and I am hpoing to convince her to order an MRI of my> > brain. I have done some reading and I have heard that> > with cushings caused by pituitary tumor, the tumor can> > only be seen on MRI or CT scan film 50% of the time.> > I'm not sure but it is worth a try anyways. The endo> > says he will do the dexamethasone test if the second> > 24 hr urine is high and if that test is also high he> > will do x-rays.> > > > I am just frazzled to my very last nerve with> > constantly having to wait weeks upon weeks for> > answers. My hair is falling out, I have uticaria> > (hives and sores) all over my face and body and with> > the weight gain I can't bear to look in the mirror.> > > > I am an avid runner and I have been slowed to walking> > instead of running and ove rthe last 4 weeks I haven't> > even been able to get out to do that and now with> > broken lower back...on bedrest. Do doctors realize> > what they put us through when we feel like this and> > they say.."Come back in 6 weeks?"> > > > grrrr> > > > Don't worry BJ, While I definitely speak my mind, I am> > open hearted and minded gal and I was just expressing> > myself, and yes definitely a misunderstanding, but i> > was not offended. )> > > > jean>

[Guest guest]

Hi , I know it has the ability to affect your

periods quite a bit. My periods are still very

regular but have been growing lighter the last few

years, so I'm unsure whether it's the Hashis or

maybe I'm perimenopausal... I'm 35 and when I

mentioned the possibility of perimenopause to a gyn,

she was like " DON'T freak out, you're fine. " Huh??

I've never been sure of even wanting kids so I was

a little ticked she got so patronizing with me.

Both my mom and her mom started menopause very young

at 34. But the gyn is convinced I show no other signs

of perimenopause... so I have no clue..

>

> Hi, I've been watching....forget the computer word....and was

wondering how

> HT affects y'alls periods? Mine was gone for 3 yrs after my 2nd

child then

> started back for 3-4 months which coincidentally happened after

gallbladder

> surgery and has been the only time I've felt good too then it

stopped again

> and I feel bad and symptoms are coming back.

>

>

[Guest guest]

-

My periods have seemed to get heavier over the years. Part of it

may be that I was on birth control for so long (which kept them

lighter). But there was a time when I didn't use any birth control

about 12 years ago (for about 2 years) & they were not as heavy as

they are now. I hate it. BTW, I am 35 years old.

Miaja**

>

> Hi, I've been watching....forget the computer word....and was

wondering how

> HT affects y'alls periods? Mine was gone for 3 yrs after my 2nd

child then

> started back for 3-4 months which coincidentally happened after

gallbladder

> surgery and has been the only time I've felt good too then it

stopped again

> and I feel bad and symptoms are coming back.

>

>