Re: Are All Chronic Fatigue Syndrome/Fibromyalgia Patients Low Thyroid?

March 17, 2006

On Mar 17, 2006, at 8:28 PM, wrote:

> http://www.hormoneandlongevitycenter.com/cfidsfibromyalgia/#8

>

> There is mounting evidence that hypothyroidism is present in the

> majority of and possibly all chronic fatigue and fibromyalgia (CFS/FM)

> patients. The problem is that standard blood testing that consists of

> TSH, T4 and T3 does not detect it. Thus, many CFS/FM patients are

> erroneously told over and over that their thyroid levels are fine. TSH

> is secreted by the pituitary in the brain, telling the thyroid to

> secrete T4, which is not the active thyroid hormone. T4 must then be

> converted in the body to the active thyroid hormone T3. When T4 and T3

> levels drop, the TSH should increase indicating hypothyroidism. This

> is the standard way to diagnose hypothyroidism. There are, however,

> many things that result in hypothyroidism but are not diagnosed using

> the standard TSH and T4 and T3 testing. This method misses thyroid

> problems with CFS/FM patients 90% of the time.

Thanks for putting this up here, . The Hormone & Longevity

Center is Kent Holtorf's home clinic in LA. In other words, it's the

FFC network's mother ship.

I was, in fact, in there just yesterday. Holtorf is the one who has

been quoted in several places as saying that he thinks as many as 90%

of PWCs have unaddressed thyroid issues -- for the very reasons laid

out so clearly in this paper.

This piece is on the FFC's main website, and summarizes pretty

concisely both my experience with thyroid meds, and my current

beliefs about the role it plays in CFS. If you go to an FFC, thyroid

is one of the two or three first things they will address with you.

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

BTW, I had a good visit. A quick recap:

My adrenal blood tests last summer were very low. (I hadn't picked

that up in our previous visits.) He was emphatic that I need to get

on with my long-delayed trial of Cortef. I wish I could share his

enthusiasm...but I promised him I'd get to it as soon as I get home.

He also added a tiny amount of Cytomel to my Armour regime to try.

I'm clearly getting enough T4, but there may be room for a little

more T3.

The FFC doctors are aware of and interested in the notion of

cavitations. They're not sure what they think yet, but are open to

the idea that this might be effective.

He sent me home with a note to my regular GP to order up some tests

(which they haven't done yet) for Lyme and mycoplasma. So those will

be coming along shortly.

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

Also, I came out of there with a question. The shot they give me,

which is based on Salvato's work, is a 5 ml injection that

compounds methyl B12, glutathione, and ATP. I am trying to figure out

what the proportions are, in the hope that I might be able to get

something similar compunded closer to home (and hence cheaper).

My FFC doc said that there's about 2 mg of methyl B12 in each shot. I

know most of the rest is glutathione. Is anybody familiar enough with

Salvato's protocol to hazard a guess about the proper ratios of stuff

in this cocktail?

Sara

March 18, 2006

Hi Sara,

I am in the same boat. My cortisol is in the pits. Well, with having

undiagnosed thyroid issues for so long, the body can only take so much

before the adrenals start pooping out. You add body stress (from low

thyroid or poor conversion) to everyday life stress, personal

struggles, childhood shit, and the adrenals are doomed. SO you go

years and years with this and eventually you have people that finally

get a diagnosis of hypothyroidism who start meds and immediately feel

the " jolt " and can't handle it. They dump the meds, claim it's not

thyroid and start digging around in all these other pots. If it took a

long time to get sick, it's going to take someg time to get well. Most

people by this point are so eager to get well however, that they can't

stay focused on one area. You just can't get well overnight. It

appears that you are one who has stuck it out and you are still

pursuing and that's great. I am with you. I am not 100% better, but

it's going to take some tweeking with the cortisol and the hormones. I

am not at all saying that you shouldn't try to heal the immune system

while doing this, but heck, I have two babies to care for and a

husband that wants and needs me, and by golly, I am not going to start

digging around in the other pots until I have exhausted this avenue,

in which I don't think I will. I am half-way there and I want to run

the Houston marathon. Last year was not my year. Okay lol, now i am

going on a tangent lol.

What people have to understand is that I was many of these people on

here with all the same symptoms but without a diagnosis. Everything

was showing up " normal " . 15+ year (and honestly I believe, as I said,

that I was born with this because I had many problesm as a kid) I went

through this personal hell. How heartbreaking is it to have your

family members and friends thinking you are crazy and a hypochondriac?

Now that I have a diagnosis, I get someone on here telling me, " You're

young, so you probably just have hypothyroidism. You are not like us

with CFS " . Here I am again not getting validated. I really came on her

hoping I could help others like me.

P.S. Wish I was in LA to see Holtorf

>

> Thanks for putting this up here, . The Hormone & Longevity

> Center is Kent Holtorf's home clinic in LA. In other words, it's the

> FFC network's mother ship.

>

> I was, in fact, in there just yesterday. Holtorf is the one who has

> been quoted in several places as saying that he thinks as many as 90%

> of PWCs have unaddressed thyroid issues -- for the very reasons laid

> out so clearly in this paper.

>

> This piece is on the FFC's main website, and summarizes pretty

> concisely both my experience with thyroid meds, and my current

> beliefs about the role it plays in CFS. If you go to an FFC, thyroid

> is one of the two or three first things they will address with you.

>

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

>

> BTW, I had a good visit. A quick recap:

>

> My adrenal blood tests last summer were very low. (I hadn't picked

> that up in our previous visits.) He was emphatic that I need to get

> on with my long-delayed trial of Cortef. I wish I could share his

> enthusiasm...but I promised him I'd get to it as soon as I get home.

>

> He also added a tiny amount of Cytomel to my Armour regime to try.

> I'm clearly getting enough T4, but there may be room for a little

> more T3.

>

> The FFC doctors are aware of and interested in the notion of

> cavitations. They're not sure what they think yet, but are open to

> the idea that this might be effective.

>

> He sent me home with a note to my regular GP to order up some tests

> (which they haven't done yet) for Lyme and mycoplasma. So those will

> be coming along shortly.

>

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

>

> Also, I came out of there with a question. The shot they give me,

> which is based on Salvato's work, is a 5 ml injection that

> compounds methyl B12, glutathione, and ATP. I am trying to figure out

> what the proportions are, in the hope that I might be able to get

> something similar compunded closer to home (and hence cheaper).

>

> My FFC doc said that there's about 2 mg of methyl B12 in each shot. I

> know most of the rest is glutathione. Is anybody familiar enough with

> Salvato's protocol to hazard a guess about the proper ratios of stuff

> in this cocktail?

>

> Sara

>

March 18, 2006

Newbie question. What does FFC stand for please?

Lee

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

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

March 18, 2006

Fibromyalgia and Fatigue Center. I go there as well in Michigan.

I agree with the overall idea of the Thyroid but I think I am one of

the exceptions. I had all of the symptoms of " overdose " on Armour

at the first very low dose. When I look at the symptoms of

Hypothyroidism I only have one or two symptoms (the fatigue

symptoms) and I also have Lyme Disease so I think that is what is

causing my issues.

I've had a really rough week trying to sort this all out.

>

> Newbie question. What does FFC stand for please?

>

> Lee

>

> -------Original Message-------

>

> This list is intended for patients to share personal experiences

with each

> other, not to give medical advice. If you are interested in any

treatment

> discussed here, please consult your doctor.

>

March 18, 2006

On Mar 18, 2006, at 12:03 AM, wrote:

> I am in the same boat. My cortisol is in the pits. Well, with having

> undiagnosed thyroid issues for so long, the body can only take so much

> before the adrenals start pooping out. You add body stress (from low

> thyroid or poor conversion) to everyday life stress, personal

> struggles, childhood shit, and the adrenals are doomed.

This appears to be pretty much what happened to me -- boosted along

with some stiff physical hits (mono, long-term use of some tough

antibiotics, a couple of car accidents, etc. etc.).

> SO you go years and years with this and eventually you have people

> that finally

> get a diagnosis of hypothyroidism who start meds and immediately feel

> the " jolt " and can't handle it. They dump the meds, claim it's not

> thyroid and start digging around in all these other pots.

Thyroid's a tough nut to crack. It takes a lot of patience and

experimentation to find the right drugs and dosages and supplemental

stuff that makes it all work right. Most doctors don't understand

this; most patients don't have the patience for it. And when it

doesn't work, it can not work rather spectacularly, which does induce

people to quit.

I was lucky to have a doctor who had sufficient confidence in his

clinical diagnosis to hold my hand through the rough parts, and stick

by me until we found the combo that worked. That was five years ago,

and I'm getting ready to tweak that combo again (there's definitely

room for optimization here), but as I wrote in my last post, I'm

beyond grateful for the gains that got made in the last round.

> If it took a

> long time to get sick, it's going to take someg time to get well. Most

> people by this point are so eager to get well however, that they can't

> stay focused on one area. You just can't get well overnight.

The first year on Armour was amazing. Every month, I was noticing

another few body systems and functions that suddenly seemed to just

work better. The healing did take most of that year to work its way

through the system, and it was a delight to see my skin, my hormonal

function, my eyes and ears, and all these other little details coming

back to more vivid life.

> I am not 100% better, but

> it's going to take some tweeking with the cortisol and the hormones.

Same here. It's an ongoing process. This is one of the small handful

of roads that's actually taken me somewhere useful, so it makes sense

to invest the time and money it takes to see how far down it I can

go. My FFC visit yesterday was another step down that road.

> I am not at all saying that you shouldn't try to heal the immune

> system

> while doing this, but heck, I have two babies to care for and a

> husband that wants and needs me, and by golly, I am not going to start

> digging around in the other pots until I have exhausted this avenue,

> in which I don't think I will. I am half-way there and I want to run

> the Houston marathon. Last year was not my year. Okay lol, now i am

> going on a tangent lol.

I'm running a Houston marathon of my own: going back to grad school

at the UH to get my masters. If I can sustain my current pace (which

is a little faster than I've been used to going), I'll finish in June

2008 -- the month I turn 50.

Grad school was out of the question a year ago. It was FFC that gave

me the margin to take this on.

> What people have to understand is that I was many of these people on

> here with all the same symptoms but without a diagnosis. Everything

> was showing up " normal " . 15+ year (and honestly I believe, as I said,

> that I was born with this because I had many problesm as a kid) I went

> through this personal hell. How heartbreaking is it to have your

> family members and friends thinking you are crazy and a hypochondriac?

I do wonder if this fragility runs in families. Both my grandmother

and my father had post-polio syndrome, which started weakening them

seriously in mid-life. My grandmother was absolutely ravaged by it;

and her illness became the family's elephant in the living room --

the thing nobody talks about, but everybody has to arrange their

lives around.

It's scary sometimes to see myself, and realize how much I understand

now about how she must have felt. The difference is that we do talk

about it in our family, and have openly found ways to cope that

didn't include blaming it on the Devil and selling our souls to the

local fundamentalist church.

> Now that I have a diagnosis, I get someone on here telling me, " You're

> young, so you probably just have hypothyroidism. You are not like us

> with CFS " . Here I am again not getting validated. I really came on her

> hoping I could help others like me.

>

> P.S. Wish I was in LA to see Holtorf

Holtorf's other flagship clinic is the one in Dallas. Still not

close, but closer <g>. And I think they may have one in Houston now

as well; if not, then soon.

I'm not actually seeing Holtorf himself, though I've met him and

spoken to him briefly practically every time I've come in. My doctor

at FFC is Tenenbaum, an endocrinologist out of U Penn who is a

protoge of Weil. A very smart guy, and an excellent listener.

The more I work with him, the more I'm coming to trust and like him.

Sara

March 18, 2006

On Mar 18, 2006, at 4:28 AM, Leona Gibson wrote:

> Newbie question. What does FFC stand for please?

Sorry. Fibromyalgia And Fatigue Centers. They're a new and growing

national network of clinics specializing in CFS. Dr. Kent Holtorf of

LA is the founder.

Several people on this list are clients at their various clinics, and

we're having an ongoing discussion about the network's approach to

CFS and the similarities and differences between the various clinics.

Their website is <www.fibroandfatigue.com>.

Sara

March 18, 2006

Thanks for the explanation. I live too far from a center but tell me are

people happy with the approach?

Lee

-- Re: Are All Chronic Fatigue

Syndrome/Fibromyalgia Patients Low Thyroid?

On Mar 18, 2006, at 4:28 AM, Leona Gibson wrote:

> Newbie question. What does FFC stand for please?

Sorry. Fibromyalgia And Fatigue Centers. They're a new and growing

national network of clinics specializing in CFS. Dr. Kent Holtorf of

LA is the founder.

Several people on this list are clients at their various clinics, and

we're having an ongoing discussion about the network's approach to

CFS and the similarities and differences between the various clinics.

Their website is <www.fibroandfatigue.com>.

Sara

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

March 18, 2006

On Mar 18, 2006, at 2:53 PM, Leona Gibson wrote:

> Thanks for the explanation. I live too far from a center but tell

> me are

> people happy with the approach?

Some are, some are less so. They're a fairly new thing on the scene,

and I've seen improvements in practice and quality even since I

started going last August. We've also also noted a certain unevenness

between the clinics (ask here about specific ones, and you'll get the

lowdown), but I'm guessing that will even out as time passes and the

doctors share knowledge and become more uniform in their approaches.

The centers are set up to handle patients from out of town. They've

got funding structures and office practices that make that possible;

and can even help you with inexpensive places to stay. Their out-of-

town patient fee is $1200, which covers the first one-hour visit,

plus three half-hour follow-ups by either phone or in person over the

next 12 months. This fee does NOT cover testing or drugs; but they

will work with your insurance company to get this stuff covered to

the extent it can be.

I live 1400 miles from the FFC I go to (LA). But I chose this one

because it's about a 90-minute drive from my mother's house. Since I

go visit her a couple times a year anyway, I don't have any

additional travel costs I wouldn't be paying anyway.

If you're interested, perhaps you could look over the list, and find

one close to someone you wouldn't mind visiting a few times a year,

and who could put you up.

Sara

March 18, 2006

Not everyone (immunesupport.com has a board that talks about it a

lot. Feedback is 90% positive, I would say)

I would recommend it even though I don't agree with absolutely

everything they do. Many patients are treated " out of state " if you

are interested.

I drive only 1/2 hour and there are folks there from the other side

of Michigan (4 hour drive) and Indiana.

Also, it's VERY expensive. Worth it in my book.

>

> > Newbie question. What does FFC stand for please?

>

> Sorry. Fibromyalgia And Fatigue Centers. They're a new and growing

> national network of clinics specializing in CFS. Dr. Kent Holtorf

of

> LA is the founder.

>

> Several people on this list are clients at their various clinics,

and

> we're having an ongoing discussion about the network's approach to

> CFS and the similarities and differences between the various

clinics.

>

> Their website is <www.fibroandfatigue.com>.

>

> Sara

>

> This list is intended for patients to share personal experiences

with each

> other, not to give medical advice. If you are interested in any

treatment

> discussed here, please consult your doctor.

>

March 18, 2006

Sara,

I talked with the head office last September and they mentioned that there was

talk about them possibly opening a centre in Canada but they didn't know where.

Keep checking their site but I haven't seen any big announcements yet though.

Barbara

Re: Are All Chronic Fatigue Syndrome/Fibromyalgia

Patients Low Thyroid?