Re: thyroid problems along with cfs?

[Guest guest]

Thyroid testing has been a bad joke that doomed countless people to years of sub

optimal functioning and frustration...or worse. If you have a TSH above 2, you

need treatment, perhaps a thyroid supplement, maybe iodine so you can convert t4

to t3. Two tests that will help define the problem: take your temperature (under

armpit)before you get out of bed. Normal is 97.8 to 98.2. Less suggests need for

treatment. Another test, paint a heavy coat of iodine on your inner arm or

belly. Check in 24 hours. If mostly gone this suggests a need for supplemental

iodine. If you need a thyroid supplement, I prefer Armour (has t3 and t4) but

most endos don " t. Good luck in finding a skilled physician. Mel

[Guest guest]

Kathy F

I support my adrenals by alternation licorice root and Siberian ginseng.

Hope this helps

mjh

In a message dated 2/15/2006 2:28:04 PM Eastern Standard Time,

kathryn@... writes:

My naturopath says that there are no " decent " , ie accurate

tests of adrenal insufficiency. I had a TSH of 16 - my

levels are now normal after taking desiccated thyroid, but

my health is worse.

I did see an endocrinologist because I didn't tolerate any

synthetic thyroid meds; she told me that if my adrenals were

a problem, my face would look tanned unlike the pale face

she said I had.

Kathy F.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

In a message dated 2/15/2006 4:27:39 PM Eastern Standard Time,

alphabear@... writes:

DHEA has been a major player for me too. I would never have believed that 5

mg per day could add such a sense of well being. Good day. Mel

Mel

And, I on the other hand, had NO response to 25 mg DHES daily. GO figure

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

>

> Thyroid testing has been a bad joke that doomed countless people to

years of sub optimal functioning and frustration...or worse. If you

have a TSH above 2, you need treatment, perhaps a thyroid supplement,

maybe iodine so you can convert t4 to t3. Two tests that will help

define the problem: take your temperature (under armpit)before you get

out of bed. Normal is 97.8 to 98.2. Less suggests need for treatment.

Another test, paint a heavy coat of iodine on your inner arm or belly.

Check in 24 hours. If mostly gone this suggests a need for supplemental

iodine. If you need a thyroid supplement, I prefer Armour (has t3 and

t4) but most endos don " t. Good luck in finding a skilled physician. Mel

>

>

Well see, that's the problem. There is some benefit, but the cons

outweigh the pros. He put me on meds, I took them, and I couldn't

sleep. That was when I was able to sleep in the first place. Not to

mention it made my headaches unbearable, it made by body aches just

about unbearable, and I literally cannot drink enough water to sustain

myself. I am already drinking a gallon a day, and when I take my meds,

it increases to probably a gallon and a half, or thereabouts. That's a

pissload of water.

[Guest guest]

On Feb 15, 2006, at 9:38 AM, mascis_j wrote:

>

>>

>> Thyroid testing has been a bad joke that doomed countless people to

> years of sub optimal functioning and frustration...or worse.

Too true. You need a thyroid-literate doctor, one who knows how to

diagnose from clinical symptoms and a wide range of tests, instead of

relying on a stupid T4 panel that tells you nothing.

My own family doctor looked at me for six years straight at my annual

physical. Every year, she'd say, " I swear to God, there's something

wrong with your thyroid. " Her clinical intuition picked up all the

symptoms (which were all out there in broad daylight for those with

eyes to see). So she'd run a standard panel, which always came back

borderline " normal " ....and she'd value the test results over her

intuition every time. As a result, my blatant thyroid problems would

be ignored for another year.

Six years of my life lost this way. I've never gotten over my anger

about that.

When I finally found a doctor ( Shames, in Marin) who would

treat my symptoms instead of my test results -- and got a huge chunk

of my recovery from it -- she was absolutely furious with me. Called

him a quack, and threatened to toss me out of her practice if I

continued to see him. Never mind that I was actually having a life

for the first time in a decade....go figure.

> Well see, that's the problem. There is some benefit, but the cons

> outweigh the pros. He put me on meds, I took them, and I couldn't

> sleep. That was when I was able to sleep in the first place. Not to

> mention it made my headaches unbearable, it made by body aches just

> about unbearable, and I literally cannot drink enough water to sustain

> myself. I am already drinking a gallon a day, and when I take my meds,

> it increases to probably a gallon and a half, or thereabouts. That's a

> pissload of water.

This sounds almost exactly like the reaction I had to the thyroid

meds before I started the DHEA. I spent about three days thinking I

was gonna die.

Not kidding: you may really want to go over all this again, this time

with a thyroid-smart doctor who's willing to work it through with you.

Sara

[Guest guest]

Have you had your adrenals properly elevated?

Looking beyond the " standard lab values " ?

It is often reported that people who have adrenal insufficiency get

worse on thyroid treatment alone.

>

> Has anyone else had this? I started going to Dr. for fatigue in '98.

> Through 3 different thyroid tests through the years, all came back

> negative. Then in '04 one came back posi for thyroid.

>

> The Dr. put me on meds, and they didn't help. I got a little boost, but

> the main overlording fatigue didn't abate. Plus, it screwed with my

> sleep, made me even thirstier (I drink a gallon of water a day

> already), and increased my pain levels.

>

> Is there any research showing that cfs screws with thyroid stimulating

> hormone without there actually being thyroid dysfunction?

>

> Thanks.

>

[Guest guest]

In a message dated 2/15/2006 6:28:46 PM Eastern Standard Time,

mercuria@... writes:

It's available very inexpensively in almost any supplement shop in

the US.

Also at those 'round the corner places like K-Mart, WalMart, Sam's Club for

the giant, economy size, the supermarkets....

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

My naturopath says that there are no " decent " , ie accurate

tests of adrenal insufficiency. I had a TSH of 16 - my

levels are now normal after taking desiccated thyroid, but

my health is worse.

I did see an endocrinologist because I didn't tolerate any

synthetic thyroid meds; she told me that if my adrenals were

a problem, my face would look tanned unlike the pale face

she said I had.

Kathy F.

----- Original Message -----

From: " per h " <pehan03@...>

>

> Have you had your adrenals properly elevated?

> Looking beyond the " standard lab values " ?

> It is often reported that people who have adrenal

> insufficiency get

> worse on thyroid treatment alone.

>

[Guest guest]

On Feb 15, 2006, at 11:26 AM, Kathy Froese wrote:

> My naturopath says that there are no " decent " , ie accurate

> tests of adrenal insufficiency. I had a TSH of 16 - my

> levels are now normal after taking desiccated thyroid, but

> my health is worse.

>

> I did see an endocrinologist because I didn't tolerate any

> synthetic thyroid meds; she told me that if my adrenals were

> a problem, my face would look tanned unlike the pale face

> she said I had.

I've heard pretty much the same thing: adrenal testing is difficult,

and the results are questionable at best.

That's why Shames told me to just try the DHEA rather than open that

whole can of worms. It's simple, over-the-counter, and cheap. He said

it improved conditions for about 75% of his patients who didn't

tolerate thyroid well. And if it didn't help, they were out, like,

ten bucks and a trip to the drugstore.

I pass this along to you.

Never heard that " tanned " thing before. I'm a California girl with

fair skin, and I stay the hell out of the sun. My adrenals haven't

worked at all well for probably 20 years; but it hasn't added a

bronze glow to my cheeks. In fact, when I'm feeling rotten, I'll go

white as death.

Sara

[Guest guest]

>

> This sounds almost exactly like the reaction I had to the thyroid

> meds before I started the DHEA. I spent about three days thinking I

> was gonna die.

>

> Not kidding: you may really want to go over all this again, this

time

> with a thyroid-smart doctor who's willing to work it through with you.

>

> Sara

>

So what did you do? DHEA, what is that? What was your regimen? Are you

still on it? After you started, how long was it before you felt better?

I can't do this anymore...

Thanks.

[Guest guest]

>

>

> Have you had your adrenals properly elevated?

> Looking beyond the " standard lab values " ?

> It is often reported that people who have adrenal insufficiency get

> worse on thyroid treatment alone.

>

No adrenal anything. I just got checked a couple weeks ago, and

everything was normal. So I should check with my Dr. about that? They

work, is all I know.

Thanks.

[Guest guest]

>

> My naturopath says that there are no " decent " , ie accurate

> tests of adrenal insufficiency. I had a TSH of 16 - my

> levels are now normal after taking desiccated thyroid, but

> my health is worse.

>

> I did see an endocrinologist because I didn't tolerate any

> synthetic thyroid meds; she told me that if my adrenals were

> a problem, my face would look tanned unlike the pale face

> she said I had.

>

> So what is your situation now? Are you still taking them? And if so,

with your TSH normal, you say you still feel ill, or even worse?

Thanks.

[Guest guest]

Still taking them; all levels are normal, but I'm feeling

worse.

----- Original Message -----

From: " mascis_j " <mascis_j@...>

>

>>

>> My naturopath says that there are no " decent " , ie

>> accurate

>> tests of adrenal insufficiency. I had a TSH of 16 - my

>> levels are now normal after taking desiccated thyroid,

>> but

>> my health is worse.

>>

>> So what is your situation now? Are you still taking them?

>> And if so,

> with your TSH normal, you say you still feel ill, or even

> worse?

>

> Thanks.

[Guest guest]

Sara, except for the pineal gland all the endocrine glands have a feedback

system, a self regulating method. They also affect each other. If one gland is

malfunctioning, it is reasonable to assume others may be involved. It does get

complicated...all the more reason to have extensive testing by a capable

endo...if one can be found. I'm glad you found help from the DHEA combo. How did

you arrive at that ? DHEA has been a major player for me too. I would never

have believed that 5 mg per day could add such a sense of well being. Good day.

Mel

[Guest guest]

Kathy, If your TSH was 16 and T4 meds didn " t work, this suggests a deficiency in

iodine. The animal thyroid is from pork. If you have allergy to pork this would

explain your feeling worse. By the way, normal TSH is under 2.0 but most docs

would disagree. Mel

[Guest guest]

Sara, I like your adrenal test, but DHEA dosage varies. Start low and go slow.

Mel

[Guest guest]

On Feb 15, 2006, at 12:43 PM, mascis_j wrote:

>> This sounds almost exactly like the reaction I had to the thyroid

>> meds before I started the DHEA. I spent about three days thinking I

>> was gonna die.

>>

>> Not kidding: you may really want to go over all this again, this time

>> with a thyroid-smart doctor who's willing to work it through with

>> you.

>>

>> Sara

>>

>

> So what did you do? DHEA, what is that?

It's the main product of the adrenal glands -- the raw material for

about 80% of everything else the adrenals make. A lot of PWCs find it

VERY hard to take on its own, because it's a very powerful hormone

and can really screw with your endocrine system. But one of the

things it does best is help the body metabolize thyroid -- so if

you're having problems tolerating thyroid medication (particularly if

it's making your ME symptoms worse), it's a thing to try.

It's available very inexpensively in almost any supplement shop in

the US.

> What was your regimen?

Depends on the amount of thyroid I'm using. The ratio that works for

me is about 1:3 -- that is, about 35 mg of DHEA to 100 mg of thyroid.

When I was taking 120 mg of thyroid, I took 40 mg of DHEA.

But that ratio probably varies from person to person. I started with

25 mg of thyroid and 10 of DHEA. Over time, I ramped up the thyroid

very gradually -- it took about 6-7 months to get to the 100 mg dose

-- and just kept the DHEA in proportion as it rose.

If I were starting out, I'd buy a small bottle of 25 mg tablets, and

one of 5 or 10 mg tablets. (Not capsules, because you want to be able

to split them to get smaller doses.) And I'd start with about a

quarter of my thyroid dose, then adjust that based on how I was feeling.

> Are you still on it?

Every morning for the past four years.

> After you started, how long was it before you felt better?

I knew within days that I was onto something good -- more energy,

better sleep, better digestive function -- in fact, every organ in my

body just started to work better. The improvement continued for most

of a year.

> I can't do this anymore...

It's something relatively safe to try. Be sure to Google around and

do some reading before you proceed.

Let me know if it helps. Dr. Shames, as I said, says he's had really

good results with this. I know I sure wouldn't be on thyroid now if

it wasn't for the DHEA kicker.

Sara

[Guest guest]

On Feb 15, 2006, at 1:29 PM, Mel Baldwin wrote:

> Sara, except for the pineal gland all the endocrine glands have a

> feedback system, a self regulating method. They also affect each

> other. If one gland is malfunctioning, it is reasonable to assume

> others may be involved. It does get complicated...all the more

> reason to have extensive testing by a capable endo...if one can be

> found.

I'd swear by Dr. Tenenbaum at FFC in LA. Brilliant endo -- and

all he does is CFS. I've had some good docs over the years who got me

some decent gains, but Dr. T got me farther faster than all the rest

put together.

> I'm glad you found help from the DHEA combo. How did you arrive at

> that ?

Dr. Shames in Marin, who put me on the Armour in the first

place, recommended it when I called him in desperation. I'd been on

thyroid for two days, and was tanking fast.

He said: Try this. It helps most of my patients who have this issue.

So I tried it. Felt better in hours. Never looked back.

> DHEA has been a major player for me too. I would never have

> believed that 5 mg per day could add such a sense of well being.

I'd tried it before on its own -- 25 mg/day for a couple months --

and gained weight like a pig. Made me mean, too. I hated it, and got

off.

But alongside the Armour, it's been magic stuff.

Sara

[Guest guest]

Glutathione repletion methods can, and in my case have, eliminate CFS

hypothyroidism. Ck out post#90019 for a more in-depth view.

" mascis_j " <mascis_j@...> wrote:

>

> Has anyone else had this? I started going to Dr. for fatigue in '98.

> Through 3 different thyroid tests through the years, all came back

> negative. Then in '04 one came back posi for thyroid.

>

> The Dr. put me on meds, and they didn't help. I got a little boost, but

> the main overlording fatigue didn't abate. Plus, it screwed with my

> sleep, made me even thirstier (I drink a gallon of water a day

> already), and increased my pain levels.

>

> Is there any research showing that cfs screws with thyroid stimulating

> hormone without there actually being thyroid dysfunction?

>

> Thanks.

>

[Guest guest]

.. By the way, normal TSH is under 2.0 but most docs would disagree. Mel

Mel,

My last TSH was 0.389. My T-4 is high. Any comments?

B.

[Guest guest]

B., Your numbers seem unusual. The TSH suggests that you have adequate active

(free T3) thyroid, but an elevated T4 suggests that you aren't converting T4 to

T3. My best guess is that you need iodine to convert T4 to T3...which would

lower the TSH some more. It would help if I had some numbers. Do you have

numbers for T4 and free T3? Good evening. Mel

[Guest guest]

mascis, I need much more info...thyroid lab values, type and amount of thyroid

supplement. I would strongly encourage two things: Do the iodine test, apply

heavy on forearm or belly and check in 24 hours for residual. Also, please get

tested for diaetes insibidus...which seems a prime suspect. I will be away until

Sunday. Good hunting, good luck, and good nite, Mel

[Guest guest]

Kathy, If you can't tolerate the Armour thyroid, the best T4 preparation in my

experience is Levoxyl...no synthroid. Also, some on this sit have had succell in

combining Thyroid and DHEA...if all else fails. Nite, Mel

[Guest guest]

>

> B., Your numbers seem unusual. The TSH suggests that you have

adequate active (free T3) thyroid, but an elevated T4 suggests that

you aren't converting T4 to T3.

So Sorry, meant the opposite - lowish Free T-4 (or do you think it

so?) numbers below

My best guess is that you need iodine to convert T4 to T3...which

would lower the TSH some more. It would help if I had some numbers. Do

you have numbers for T4 and free T3? Good evening. Mel

Yes (recent numbers): Free T3 = 3.70 (range 1.80-4.60)

Free T4 = 0.90 (range 0.9 -1.8)

TSH 0.389 )previously it was 0.019 considered

low from the range 0.27-4.2. My free T4

was 1.40)

My doc said he thought my TSH low because I was taking too much

Armour; therefore, he decreased it from 90 mg to 45 mg. I seem to

function all right on this (am Hypo and Hashi.), at least outwardly.

Thanks for any help

>

>

>

[Guest guest]

Hi, ballady4.

" ballady4 " <ballady4@...> wrote:

(recent numbers): Free T3 = 3.70 (range 1.80-4.60)

> Free T4 = 0.90 (range 0.9 -1.8)

> TSH 0.389 )previously it was 0.019 considered

> low from the range 0.27-4.2. My free T4

> was 1.40)

>

> My doc said he thought my TSH low because I was taking too much

> Armour; therefore, he decreased it from 90 mg to 45 mg. I seem to

> function all right on this (am Hypo and Hashi.), at least outwardly.

> Thanks for any help

***You very well may have hydrogen peroxide hypothyroidism(HPH), not

Hashimoto's(as discovered by Rich Van Konynenburg, Ph.D. in CFS and who has

helped many of us on this list). Your thyroid test scores are very remeniscent

of mine which I had done many over several years until recently where I've

conquered my hypothyroidism.

***Check out post message# 90350 to get the complete scoop on how I did and you

may do this.