Re: tsh levels and hyper

[Guest guest]

I like to know the limitations of the docs on the list. There are docs I would recommend for some folks but not for others. Dr. Ozan is a doc on our list who has a lot of positives, but we know he does not like TSH to be too low or T3 too high. So, we do not recommend him for folks who know they need their TSH suppressed or their T3 over range. For me, an unwillingness to treat to below a TSH of 1 is an indicator that this doc is willing to leave many thyroid patients undermedicated, that he does not really understand hypothyroidism. I got this info from a lady who had travelled halfway across the country and spent big bucks to see Dr. A, when she could have gotten the same treatment from her local GP for a fraction of the cost. When she did not feel well with a TSH of 1, he was shoving

antidepressants at her. (This was not the only bad report I got on this doc.) So, we are not talking about blanket recommendations for "wonderful" docs, but specific information, so we can connect the patient with the right doc for them. jytdtp wrote: Hi Jan,What are the criteria for a doctor being on the list. Saying they need to “prescribe a large amount of armour...” seems a bit harsh, but I have no idea if that’s a reasonable requirement for a good doctor.. Sue

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[Guest guest]

Sue, that is not true. If you're hypo, on thyroid meds, your TSH is

completely suppressed, and your ft's are still very low in the range,

you are STILL HYPO. After being on thyroid hormone supplementation,

the TSH level is irrelevant...it means NOTHING.

The symptoms of hypo and hyper often overlap. Many have anxiety,

heart pounding/palps, etc., when still extremely hypo. I did, and I

know many others on this board have experienced the same. At the

time, my ft's were still quite low, but my TSH had been completely

suppressed for months (<0.01). I was still hypo. When I was first

diagnosed, my TSH was 0.9...but my ft's were at the bottom of the lab

range and I was barely functioning...I was extremely hypo.

Guys, correct me if I'm wrong, but my understanding is a good doc who

truly knows how to treat thyroid successfully understands this and

typically only continues to run this lab to follow " established "

protocol, but does not use this level to determine a course of

treatment.

>

> > Sue,

> >

> > The original question was about the TSH level. And why do

doctors freak

> > out about it being suppressed. My point to your info about

> > hyperthyroidism, was simply that TSH doesn't mean anything on

> > meds. Symptoms, temperature and Free's are what should matter to

the

> > doctor. That was ALL I was trying to say. Yes, high doses can

cause

> > people to go hyper, but on some one on meds the TSH is not what

should be

> > looked at to determine that, that was what I was trying to point

out.

> >

> > Kate

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

[Guest guest]

Jan,

How the heck do you keep up with all this...? In any case, you are doing an AMAZING job...~

sue

I like to know the limitations of the docs on the list. There are docs I would recommend for some folks but not for others. Dr. Ozan is a doc on our list who has a lot of positives, but we know he does not like TSH to be too low or T3 too high. So, we do not recommend him for folks who know they need their TSH suppressed or their T3 over range.

For me, an unwillingness to treat to below a TSH of 1 is an indicator that this doc is willing to leave many thyroid patients undermedicated, that he does not really understand hypothyroidism. I got this info from a lady who had travelled halfway across the country and spent big bucks to see Dr. A, when she could have gotten the same treatment from her local GP for a fraction of the cost. When she did not feel well with a TSH of 1, he was shoving antidepressants at her. (This was not the only bad report I got on this doc.)

So, we are not talking about blanket recommendations for " wonderful " docs, but specific information, so we can connect the patient with the right doc for them.

[Guest guest]

Katy,

I said exactly what you did in fewer wrods: “Then the hard part comes in — setting aside those levels and looking at the person and how they feel.” so we are on the same side and the same page... Sue

Sue,

TSH can SOMETIMES be used effectively as a diagnostic tool. After that, it is COMPLETELY MEANINGLESS – especially for someone with Hashi’s. A suppressed TSH does not mean that you have gone hyper or that you have too much med, although many doctors believe this. Unfortunately, most doctors do not realize this and feed us the “TSH needs to remain in a specific range” line. Those doctors that “get it” test our free T3 and T4 and get those into the upper part of the ranges, going by our symptoms. They IGNORE TSH. Luckily for us, people like Starr and have written good books and some doctors are finally starting to get the message that they’ve been doing it wrong all these years.

-Katy

From: Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ] On Behalf Of jytdtp

Sent: Wednesday, March 08, 2006 5:12 PM

To: Texas_Thyroid_Groups

Subject: Re: tsh levels and hyper

Kate,

If you are HYPO and go on meds and then all of a sudden your TSH is suppressed, you have obviously gone hyper by too much med... That is why they test the levels. Then the hard part comes in — setting aside those levels and looking at the person and how they feel.

Sue

[Guest guest]

I saw her about 3 years ago. She took me off of armour, tested my thyroid, by tsh she said I was hyper. I had gained 40 lbs and couldn't lose. She told me to go on a low carb diet. And that was that.

steph

[Guest guest]

Like Kate stated earlier, the TSH is the gold standard thyroid lab of

the medical establishment. Often insurance companies won't pay if

that particular lab isn't being run, and by running it, even docs

that don't " use " it are avoiding criticism or negative action from

the medical establishment.

My TSH is completely suppressed and we're still increasing my thyroid

meds...the suppressed TSH does not mean I am hyper or will go hyper.

Hypo and/or hyper should be diagnosed by free t3 & free t4 levels, as

well as symptoms and often body temp. (My doc does use body temp,

but has agreed to allow me to be non-compliant on that issue, as my

body temp is still so low and I'm so cold, I'm unable to sleep at

night without an electric blanket, which skews my a.m. temp reading.

Since I'm barely functioning but continue to work full-time, I can't

afford to lose sleep because I'm freezing at night!)

A high TSH is one way to get an initial diagnoses of hypothyroidism,

but it isn't an appropriate tool for TREATING it, and some are

extremely hypo but never have a high TSH. Not everyone is hypo, but

for someone who has been diagnosed as hypo and is on thyroid meds, a

TSH level is not an appropriate method for determining hyper.

I think this may be a subject we have to just agree to disagree on.

Niki

>

> Niki‹why even run labs if you are not going to go by them? I got

lost on

> that point...

> If you are hypo and start on meds or increase your dose and your

tsh is now

> highly suppresed then you have over medicated yourself into the

hyper

> range... I never said TSH is the indicator... I just said it

cannot be

> ignored if it is SEVERLY suppressed... How do you think they take

labs for

> hyper?

>

> Not everyone is hypo. Some are hyper and need to UP their TSH...

It¹s

> individual.

>

>

[Guest guest]

Hi Steph,

When did you see see Fetchick? I know with me, she is giving me help with diet, relaxation, exercise, and even checks to make sure I have a primary doc for any non-Thyroid issues, a Psych for my prozac I was on for PMS, etc... We have great appts where we talk and discuss how I am, what I have done, used to do, want to do, etc...

Sue

I go to Dr. Ozan. He didn't say anything about my TSH being suppressed

He said I could try raising my armour by 1/4 gr. or I could go on synthroid. I chose the armour increase,. then I talked to him about a week later about going pm the synthroid because I didn't feel any better. that's when I added in the armour , too and felt anxious, etc. I don't think he's that uncomfortable with my tsh suppressed, but I have had several bouts with thyroiditis and I have nodules. These have now shrunk, probably because the tsh is suppressed.

I just want to feel better and I know right now I have fatigue and joint and muscle aching, like hypo. I also have anxiety. Im not sure if it is because of gettiing on and off synthroid in the past few days, if I am still adjusting to the armour increase (which I should have given myself more time on) or because I need more t3 and t4. What I've decided to do is go back to taking it 3 times a day, which I had stopped doing.

I really don't think there are any doctors in SAn that are better than Ozan. I have been to several, including Fetchik. I liked it that she called about labs and sent them in the mail with notes, however, she did not take the clinical picture into account when Iw as going to her. She said she used armour, but she wouldn't. Just my experience. None of them seem to know " cutting edge " medicine when it comes to treating thyroid disorders. I even had considered going to Amen until I heard from others on this list who had been to him. Some of these boutiques act like they understand it, but it doesn't seem like they do.

I have gotten more hope from this list than I've had in years and I have gotten better. Dr. Ozan has been the best so far. Maybe we'll hit a wall and maybe we won't. At least he listens, reads and is willing to push the envelope of conventional medicine.

steph

[Guest guest]

Steph, from the labs you posted recently, I think you've got room to

increase armour. I think you just need to be patient when you don't

feel better immediately. (I know it's hard...I'm the queen of instant

gratification!!!) It's going to take some time, and you seem to be

very sensitive to increases, so you may just have to move up slowly.

One of Dr. R's biggest complaints when he looked at my history was

that my increases since dx had been too fast. He didn't think I was

overmedicated, he just thought I had not responded well to the

increases because there was not enough time between each increase,

and all that did was exhaust my adrenals.

Dr. Ozan seems to be willing to allow you to increase for now. You

know with me, he was uncomfortable when my TSH was what he considered

too low, even though my ft's were still low (and I was still so hypo

I was passing out driving), but he's had several months to research

and learn since then, so I'm hoping he's starting to look at things

differently now. I have the feeling we all found out about him and

hit him at once, and he was suddenly overwhelmed with a bunch of

middle-aged, complex, hypothyroid women he just wasn't quite equipped

to handle yet! You have to follow your instincts, but if it were me,

I'd go with the increased Armour and give it several weeks and see

where your labs are at that point.

Another thing I'm having to learn, and this one has NOT been easy for

me, is to accept this is how I feel NOW and just do what I can, and

not push myself to do more...I found I was exhausting myself by

obsessing over how bad I felt, looking for new symptoms every second

of the day, feeling like there was a " tiger around every corner " and

pushing myself to feel better faster. (Does that even make sense???

Ha!) I'm taking baby steps, but I'm working on that...my milestone

this week...I PAID someone to come clean my house! (Sharon, aren't

you proud of me???)

At one time, did you mention he had you on cortisol? Forgive me if

I'm getting you confused with someone else...I do remember you saying

he ran some cortisol labs on you. How did they look and, if you're

also on cortisol or some form of it, where are you with that now?

Dr. R put me on hydrocortisone, and I think that's made all the

difference in the world on how I tolerated the latest increase...with

every previous increase, I felt better for a day or 2, then had a

complete crash and felt like I was back at square one. That didn't

happen this time...I don't feel great, but I don't feel worse than

before, so I'm considering that progress!

Take care!

Niki

>

> I go to Dr. Ozan. He didn't say anything about my TSH being

suppressed

> He said I could try raising my armour by 1/4 gr. or I could go on

synthroid.

> I chose the armour increase,. then I talked to him about a week

later about

> going pm the synthroid because I didn't feel any better. that's

when I added

> in the armour , too and felt anxious, etc. I don't think he's

that

> uncomfortable with my tsh suppressed, but I have had several bouts

with thyroiditis

> and I have nodules. These have now shrunk, probably because the

tsh is

> suppressed.

>

> I just want to feel better and I know right now I have fatigue and

joint and

> muscle aching, like hypo. I also have anxiety. Im not sure if it

is because

> of gettiing on and off synthroid in the past few days, if I am

still adjusting

> to the armour increase (which I should have given myself more time

on) or

> because I need more t3 and t4. What I've decided to do is go back

to taking it

> 3 times a day, which I had stopped doing.

>

> I really don't think there are any doctors in SAn that are

better

> than Ozan. I have been to several, including Fetchik. I liked it

that she

> called about labs and sent them in the mail with notes, however,

she did not take

> the clinical picture into account when Iw as going to her. She

said she used

> armour, but she wouldn't. Just my experience. None of them seem

to know

> " cutting edge " medicine when it comes to treating thyroid

disorders. I even had

> considered going to Amen until I heard from others on this list who

had been to

> him. Some of these boutiques act like they understand it, but it

doesn't

> seem like they do.

>

> I have gotten more hope from this list than I've had in years and I

have

> gotten better. Dr. Ozan has been the best so far. Maybe we'll

hit a wall and

> maybe we won't. At least he listens, reads and is willing to push

the envelope

> of conventional medicine.

> steph

>

[Guest guest]

OMG! A doc in serious need of the Schwarzenegger Cranio-Rectal Extraction Protocol! <Arnold! Bitte komen Sie hier!> <Was?> <Die Artzin hat Kopf wo die Sonne nicht scheint. . . .> sle816@... wrote: I saw her about 3 years ago. She took me off of armour, tested my thyroid, by tsh she said I was hyper. I had gained 40 lbs and couldn't lose. She told me to go on a low carb diet. And that was that. steph

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[Guest guest]

Sue

Have you read over our homepage and files and such? We are about thyroid disease and trading info on all the aspects of thyroid disorders, as well as many members here have other autoimmune disease disorders and other diseases. We are Cash Cows for the drug industry because there is a list of thyroid disease symptoms as long as your arm, and many times drugs are thrown at us, such as diet pills, antidepressants, tranquilizers, and the list goes on and on. When something is wrong, pull it out by the roots, instead of treating things surrounding it, though those may be needed while trying to get to the main thing. Many of the people on these sites have been treated for varying other things, while all the while it was what they originally thought it was or didn't know what it originally was. Two articles of interest are:

Suggestions for an Approach to the Management of Thyroid Deficiency by Dr. Barry Durrant-Peatfield

Psychiatric Manifestations of Hashimoto's Thyroiditis by Dr. C. Hall & company (credits are numerous at the end of this last link)

http://home.no.net/ngrondal/durrant-p.html

This second link is down on the list of publications by Dr. C. Hall

www.drrichardhall.com/publications.htm

That page also has many interesting links, particularly one that is titled something like Physical Illness and Relationship to Mental Symptoms or something along that line.

Re: tsh levels and hyper

What I meant to say here is both hyper and hypon symptoms MAY NOT have anything to do with the thyroid – many diseases and poor daily habits, nutrition, etc. can mimic hypo and hyper. If you are treated properly you can still feel like crap if you don’t eat right, exercise, or have undue stress, and other issues... Hope that makes sense~ sueYep and both hyper and hypo symptoms have nothing to do with the thyroid at all — once the thyroid is treated though and symptoms persist and dosages have been adjusted, it’s probably best to look at other areas--- diet, exercise, stress, and all the other diseases as well that can make us feel ill. --Sue

[Guest guest]

There aren't many who treat below a TSH of 1... thus the long distance

travels.

Cathryn

>

> This is the reason that the state groups were set-up: to help folks

find good thyroid docs. The sad truth is that most docs have their

respective heads up their collective @$$es when it comes to the

diagnosis and treatment of thyroid disorders. This includes docs who

are good for everything else.

>

> Dr. Fetchik will go on our next revision of the doctor list, but I

have yet to hear from someone who needs to have their TSH suppressed

to feel well who has seen her, or from someone who needs a very large

dose of Armour. Some docs will not Rx over a certain dose.

>

> It has been our experience that many docs will be very nice and

accomodating until you approach the threshhold of their limiting TSH

or dosing factor. That is the point at which Dr. Jekyll turns into Mr.

Hyde and Banner splits his britches and becomes " The Hulk. "

>

> The " Big A " in Houston got removed from our list because he will

not treat below a TSH of 1.

[Guest guest]

I'm invovled in a study right now concerning the autonomic nervous

system. One thing they are keeping a close watch on is my thyroid,

because they have to be able to show it is not involved. I have had a

suppressed TSH forever... considering I have been on thyroid

replacement of one sort or another for 20 years, and suffered with

Hashimoto's for 28 years, it is understandable.

The cardiologist in charge was looking at my thyroid labs: TSH, and

the Free T's. One nurse made a comment about my suppressed TSH, and

the cardiologist said " it doesn't matter, her other levels are within

the ranges. TSH has nothing to do with the rate of your heart. " They

are interested in increasing heartrates upon standing any certain

lengths, etc. Cardiologist knew her stuff.

Cathryn

>

> Niki, I think you're right.

>

> I'm suppressed, which I need to be because of the cancer. According to

> my endo, everything is hunky dory. However, I'm fairly sure I'm still

> hypo despite that low TSH - low BBT, fatigue, brain fog, low FT4 (endo

> didn't run FT3) etc. Thank goodness I also have Dr. R. in my court and

> therefore a hope of feeling better one day.

>

> I'm certainly not on too MUCH hormone, nor am I hyper.

>

[Guest guest]

Oh yes, I quite agree. Thank God they do run the TSH test and

diagnose and start treating as yet undiagnosed patients. And as you

wisely put it, then the customization can begin... unfortunately, for

most thyroid patients, it doesn't begin with the TSH test, it ends

with the TSH test.

My goiter was discovered when I was 18 years old. I had a TSH test.

It was normal. So I was normal. I had hashimoto's, but no test's

were ever run for that. I was finally diagnosed hypo when I dragged

myself to the doctor after the birth of my son, at age 26. I was kept

undermedicated until Hashi's burnt out my thyroid with a goiter 3

times the normal sized thyroid. It was like was saying

earlier... too large to breathe, or swallow, and so nodular they

couldn't biopsy anything to tell what was going on, so it had to come out.

Not arguing TSH is a valid test that has it's place. Just saying it

shouldn't be used as the only test when dealing with thyroid issues.

Cathryn

>

> I think when one first ³complains² of hypo symptoms

> or the doc feels a goiter, they do the TSH and thank God for that.

> Had my TSH NOT shown out of range I would never have gotten

> into treatment, so In that aspect the TSH is actually looked at

> And is a pretty good indicator for a starting point.

> Once established one is hypo then the customization can begin.

> sue

>

>

[Guest guest]

I was wondering the same thing, cause I use a machine and still

undermedicated.

> > Oh , yes, I was on a sleep apnea machine for a year before the hypo

> > diagnosis. How do they diagnose thyroid cancer? BTW??

> > steph

>

[Guest guest]

Hi Steph,

I'm having a bit of trouble going from 2 1/2 to 3 grains. Had to

back down to 2 3/4 and sometimes feel just a bit jittery but take my

Armour twice a day. Does the third dose keep you awake at night?

What times of day do you take them? This might be a solution for

me. Thank you so much.

>

>

> So, I tried going back to the three times a day dosing today and

felt the

> anxiety lessen. That is a hassle, but 3 times a day seems best

for me. Thanks

> for the support. I will keep ya'll posted.

> Steph

>

[Guest guest]

Steph,

Sorry, I forgot to ask how you divide your doses/how much Armour

each dose. Also, I'm sorry about the death in your family. That is

a terribly stressful situation.

>

> Yes, Niki, I think you are right. I do get so impatient.

Sometimes i feel

> like I'm so close and yet so far! In December I felt better than

I'd felt in

> years, then there was a sudden death in the family I handled

that ok, but

> crashed in February. I think I added the synthroid too soon

after the armour

> increase, in my impatience. Yes, I am sensitive to meds, despite

the fact

> that I am on hydrocortisone .725 mg.

>

> So, I tried going back to the three times a day dosing today and

felt the

> anxiety lessen. That is a hassle, but 3 times a day seems best

for me. Thanks

> for the support. I will keep ya'll posted.

> Steph

>

[Guest guest]

I had the same problem after the birth of both of my daughters. I

didn't almost bleed to death but both times they had to administer

something to stop the bleeding. I have Hashi's too. Probably a

connection somewheres along the line ...

>

> I have never heard of this and now will have to do lots of

research. I

> hemorrhaged after the birth of my son and almost bled to death. I

was never

> the same afterwards, and was diagnosed with Hashi's four years

(and lots of

> health problems) later. Thanks for the info!

>

>

>

> -Katy

>

[Guest guest]

Let me know how it goes. I take it the 6pm one doesn't interfere

with your sleep? I was taking 1 1/2 grains am and 1 1/2 grains

early afternoon but may be just a bit too much for me at one time

right now, although before I was hypo and temps too low at 2 1/2

grains. It's funny if I do get faster pulse and palps, it's at

night, far away from any Armour dose. Makes me wonder if my body

needs more than just 2x day.

>

> Some people actually benefit from thyroid at bedtime. I'm going

to try

> changing one of my doses to bedtime. I'm at 4 grains and

currently take 2

> in the am 1 grain in the early afternoon and 1 grain around 6pm.

I'm going

> to try one of the grain from the morning at bedtime and see what

happens.

>

> Kate

[Guest guest]

Thank you Jan. I will definitely try this option.

>

> I only take two doses at this point, but my second dose is in the

evening, usually at about 8 or 9 pm. It actually helps me sleep.

>

> A third small dose with food is a good way to increase if you are

having difficulty doing so.

>