Good News

January 4, 2011

Most of the women in my family have lived multiple decades without any

thyroid function. I have gone over one decade. My son is an example of

one who has done well on T4 only following complete thyroidectomy and

radioactive iodine follow-up.

Chuck,

Thanks for the all the information. I'm glad to know your son has done well

following his surgery.

I don't understand the part about binding enzymes, and also wonder about the

quality of life of the women in your family who have lived multiple decades with

no thyroid function.

Barb

Re: Good News

Barb,

You wrote:

>

> There seems to be agreement on this also Roni. I guess I didn't realize

> how serious it is to not have a thyroid, since I know people who have

> lived decades without one....

Most of the women in my family have lived multiple decades without any

thyroid function. I have gone over one decade. My son is an example of

one who has done well on T4 only following complete thyroidectomy and

radioactive iodine follow-up.

Most of the people that this list has shared with the thyroidless

group have more going on than just missing thyroid function. For

example, many seem to have T4-T3 conversion issues and need T3. The

levothyroxine treatment is based on the assumption that the liver

(mainly) and other organs will be able to efficiently convert the T4

taken orally into T3. This isn't true for about 5% of the hypoT

population, based on the number of prescriptions for T4 only versus

those with at least some T3. At least some fraction of that group

converts to ample T3 but makes too much RT3, as Roni does. RT3 actually

counteracts T3 by inertly filling T3 receptors.

Some people convert T4 to T3 effectively but have overactive binding

enzymes, which keep an excess fraction of both the T4 and T3 in a bound,

storage state circulating in the blood.

Chuck

January 4, 2011

Apparently a very large majority of hypo patients, including those with

no thyroid do in fact just take one pill per day and live essentially

perfectly normal lives. It's probably a little more important to avoid

soy and goitrogens as much as practical; and to take the pill at the

proper time WRT ingesting some products such as certain minerals but

frankly [other than the soy] I don't really pay any attention to most of it.

HOWEVER: As others have pointed out that's not true for everyone. A

tiny percentage of patients go through hell on earth, literally. Some

feel so horrible for so long that I worry they will consider exiting the

entire mess; and no, I am not exaggerating. It will literally bring

tears to my eyes to read the pleas of some patients and to have no

reasonable response to give them. Too many times we just don't have any

answers; although there is some small quantity of mostly anecdotal

evidence that suggests some of the problems may be connected to an

extended period of no treatment or under-treatment for hypothyroidism.

Organ damage that occurs in such a case may take and extended time to

correct.

I can't really give you any authoritative advice as to whether you

should consider an elective thyroidectomy. Many doctors are more

reluctant now to remove organs that are considered none-threatening

partially because sometimes we find an organ has a use that was not

previously known. OTOH given the large number of people who live with

no thyroid at all for many decades the chance of it being acutely

necessary is probably low. It is one of the options you can consider;

but right now you're still in the information gathering stage and such a

decision can/should IMHO wait a while.

In another post you referred to synthetic T4 or something similar.

Please remember that ALL of the molecules of T4 in all of the

medications as well as those manufactured by a healthy human or porcine

thyroid gland are bioidentical. The packaging, method of delivery,

binders, coloring agents and so on will vary but the basic chemical is

all exactly the same.

The bill is in the mail! [ggg]

Luck,

..

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

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

> Mon Jan 3, 2011 10:41 am (PST)

>

> IMHO the main reason we need to know if we have Hashimoto's is so we can

> be prepared to react to the " roller coaster " effect we get as the

> Hashimoto's waxes and wans as it typically does.

>

> I agree . That's obviously what was happening with me, because I

> got so hyper and my heart rate was unusually high. The doctor at the

> Mayo Clinic called it Tachycardia. I was also losing weight easily,

> which as you know, is not normal with hypothyroidism. I may keep

> taking one pill a day, and if I feel like that, cut back to 1/2 pill

> for a while, since I have a better idea of what's going on.

>

> " Your personal case is IMHO in some ways similar to that of someone with

> Hashimoto's; except that in your case the swings seem to occur much more

> rapidly than I'd expect and from much smaller doses than I'd expect.

> But what do I know...? "

>

> More than I do. LOL!

>

> I really hate this bump on my neck, and it seems there is nothing that

> can be done about that either. I've read that taking thyroid

> replacement hormone can sometimes make it smaller, or go away, but

> mine didn't appear until I had been taking meds for about two months.

> The bump is th multi-nodular goiter. Since the thyroid is going to be

> destroyed, and practically impossible to regulate, I still don't

> understand the benefit of having it. Wouldn't it be easy to regulate

> with one pill a day, with no thyroid at all?

>

> Barb

>

> Re: Good News

>

> IMHO the main reason we need to know if we have Hashimoto's is so we can

> be prepared to react to the " roller coaster " effect we get as the

> Hashimoto's waxes and wans as it typically does. That unfortunately

> means that your T4 titration dosage is a moving target and that you

> should probably have more frequent lab tests to see how you're doing

> with your T4. It also probably means that you need to pay closer

> attention to your symptoms so you can try to catch the swings sooner.

>

> Those who are hypo but don't have Hashimoto's can typically titrate the

> dosage until the lab results and symptoms are as desired and then

> maintain that dosage for long periods of time; perhaps getting tested

> only once per year. That just will not work if you have Hashimoto's.

> Yes, it's a PITA; but by knowing you have it at least you have some way

> to try to react to it.

>

> Your personal case is IMHO in some ways similar to that of someone with

> Hashimoto's; except that in your case the swings seem to occur much more

> rapidly than I'd expect and from much smaller doses than I'd expect.

> But what do I know...?

>

> Luck,

>

> .

January 5, 2011

Roni, I read a number of his responses to questions and HE IS in fact

saying something different. He recommends against taking T4 alone,

which is directly the opposite of nearly every main-stream doctor in the

US, UK and a lot of other places.

And I would suggest that you look closely at his statement again:

..

> " ...Treatment with thyroid hormone usually suppresses anti-thyroid

> antibodies and slows or stops the process of autoimmune thyroiditis. "

..

I have NEVER found any credible source that suggests there is ANY way to

" ...slow or stop the process of autoimmune thyroiditis " . As a matter of

fact about the only credible suggestions you will find are steps you can

take to avoid or lower the risk of triggering an attack; or possibly of

lowering the intensity of a flare-up. NEVER any suggestion of curing

[stopping the process] of autoimmune thyroiditis [Hashimoto's]. All of

main-stream [allopathic] medicine suggests: YOU CAN'T DO THAT, PERIOD.

He does very highly recommend T3; which while often not supported by

main-stream medicine or credible research does IMHO have sufficient

[mostly anecdotal] support that it seems to me to undoubtedly be a good

idea FOR A MINORITY OF PATIENTS. You being a prime example; and there

are a lot of others [although the percentage is small].

Regards,

..

>

> Posted by: " Roni Molin " matchermaam@...

> <mailto:matchermaam@...?Subject=%20Re%3A%20Good%20News>

> matchermaam <matchermaam>

>

> Mon Jan 3, 2011 7:51 pm (PST)

>

> , the mainstream doctors also advocate using levothyroxine, so

> he's not saying anything different actually. He also didn't say it

> cures the hashimotos, only that it suppresses the antibodies. I've

> read the mainstream sites and they pretty much do the same thing, so

> in this instance he's right with them.

>

> I would like her to have the benefit of a Reverse T3 test. The reason

> that for decades no one knew what was going on with me was that no one

> tested for it. Doctors typically don't test for it, and if they don't

> do the test they don't see it. So people like me, and I'm sure there

> are a lot more than are known, get mistreated or undertreated on a

> regular basis. I was lucky because it was my Rheumatologist that

> agreed to test for it. He was shocked when he saw the results, but he

> started me on the T3 protocol only, and I started to feel better right

> away.

>

> <>Roni

> Immortality exists!

> It's called knowledge!

>

> Just because something isn't seen

> doesn't mean it's not there<>

>

> From: <res075oh@... <mailto:res075oh%40verizon.net>>

> Subject: Re: Good News

> hypothyroidism

> <mailto:hypothyroidism%40>

> Date: Monday, January 3, 2011, 9:44 AM

>

> Roni, I'd be pretty cautious in taking Dr. Lowe's advice. A lot of what

> he writes is not AFAIK supported by any credible research; and some

> [such as the quote below] is I believe flatly contradicted by research:

> .

>

> > " Treatment with thyroid hormone usually suppresses anti-thyroid

> > antibodies and slows or stops the process of autoimmune thyroiditis.

> "

> .

> There is to my knowledge no credible research anywhere supporting that

> ANY product can effectively cure Hashimoto's [or at least put it into

> permanent remission] as his statement seems to indicate. If anyone has

> any credible support for such a claim I'd appreciate a link [one that

> does not come from Dr. Lowe]. Everything I've seen indicates that

> Hashimoto's eventually destroys the thyroid gland and treatment only

> provides the T4 that the thyroid no longer provides in sufficient

> quantity if at all. It does nothing to prevent the eventual destruction

> of the thyroid gland.

>

> Further, I've seen a number of references to the research that has been

> done comparing the results of taking T4 alone to taking a combination of

> T4 and T3. The results typically do not show any improvement above

> chance or placebo.

>

> We DO have quite a bit of anecdotal evidence that some people benefit

> from a T4/T3 combination or T3 alone; but the number appears to be so

> small that it is not picked up in the studies. You personally of course

> apparently from all the evidence are one of those who DO need something

> other than T4; but consider that for decades you couldn't get proper

> treatment and I suspect that one of the reasons is that your condition

> is so rare that your doctors had never even heard of it.

>

> I'd also be suspicious of any doctor who trolls the internet for

> patients. I would think any established doctor who is effective in his

> practice would have far too many patients already to need to spend the

> time [or even have the time to spend] seeking out patients on the

> internet.

>

> Regards,

>

> .

January 5, 2011

The funny thing is your last statement below is almost exactly what I

practice with the exception that I try to avoid soy as much as

practical. I do not seem to suffer any ill effects.

HOWEVER: There are in fact a number of good reasons for all the

warnings. Some things attack both the thyroid gland as well as the

thyroxine in your body IIRC. Other things reduce T4 absorption. Thus

they could lower the effectiveness of whatever thyroxine you have but

also reduce the ability of a poorly functioning thyroid gland to produce

enough hormone. This could provide additional variables to an already

confusing situation, especially for those riding the Hashimoto's

roller-coaster.

IMHO it does not matter nearly as much for those on a full replacement

dose or a stable titrated dose of T4 that hasn't needed to be changed

for some time. The way I look at it is that if whatever I eat decreases

the effectiveness of my T4 by 20% I can just take 20% more. There

really doesn't seem to me to be much of a down-side to such a practice.

If anyone sees a huge error in my logic please educate me.

Regards,

..

>

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

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

> Mon Jan 3, 2011 8:44 pm (PST)

>

> Thanks for the links and the suggestions Roni. I will read the

> information thoroughly. It's interesting that people here know more

> about how to live with thyroid disease than doctors. Not one doctor

> has mentioned making any changes in diet, even though I asked them.

> They act like it doesn't make any difference as long as we eat things

> in moderation.

January 5, 2011

Most people [iMHO well over 90% and probably over 95%] take one T4 pill

per day and do not suffer. There are unfortunately the exceptions, who

often may suffer horribly. In any event you don't have a lot of choice

since typically Hashimoto's completely destroys the thyroid gland

eventually.

And those exceptions can be the heart-rending ones. You haven't been

here very long but if you hang around you'll find out what I mean.

As Roni says you have to have thyroid hormone to live [ " natural " or

synthetic]. Your body uses T3 which it makes from T4. T4 has a half

life of about a week so you aren't going to get very sick if you miss a

few days; as a matter of fact some people seem to go untreated for

years. Of course they must have had some thyroid function or I would

have expected them to go into myxedema coma and death. If you take T3

alone you may notice problems sooner since the half life is about a

day. Unless you determine that you have a RT3 or other problem I'd

suggest you try the T4 alone first.

Luck,

..

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

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

> Mon Jan 3, 2011 9:03 pm (PST)

>

> There seems to be agreement on this also Roni. I guess I didn't

> realize how serious it is to not have a thyroid, since I know people

> who have lived decades without one. I thought the synthetic hormone

> would do the job of keeping hormones in balance.

>

> What I don't know is how those people who lived decades without

> thyroids struggled or suffered. My grandmother was one of them, and

> she seemed cheerful, active, and unaffected. The key word of course is

> seemed, because it's something we never talked about. Another person I

> knew who didn't have a thyroid was entirely different. He moved slowly

> and seemed depressed much of the time. Also, it is scary to think

> about being dependent on a pill to live.

>

> Barb

January 5, 2011

Chuck, if your family members have no thyroid function how are they converting

the T4 to T3?

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>