Elaine

[Guest guest]

Elaine, BE SURE you have enough memory free for the 9.0. I was on the border

and they had me upload it..talk about slow and the computer freezing up! It

was the nightmare from he**!!! I'm back to 8.0.. just thought I'd forewarn you

*just in case* Kim

[Guest guest]

thanks, Kim, since I'm in a rural area and can't get high speed access, I'll

be cautious. My son is a computer guru so I'll wait until he's here at

Christmas to do anything.

[Guest guest]

Hi Kitty,

Thyrotoxic is a word used to describe the effects of excess thyroid hormone.

And that was likely your initial diagnosis.

Some people who are thyrotoxic do develop thyrotoxic periodic paralysis, but

this is most likely to occur in people of Asian descent and in men. The muscle

pain you describe is also consistent with the sudden onset of hypothyroidism.

The muscles rely on thyroid hormone to function properly. When thyroid

hormone is inadequate, the muscles aren't able to function properly, especially

the

large muscles of the back and thighs.

Hyperthyroidism itself causes more of a muscle weakness with patients being

unable to climb stairs, for instance. Best, Elaine

[Guest guest]

> Thyrotoxic is a word used to describe the effects of excess thyroid

hormone. And that was likely your initial diagnosis.

Thanks Elaine.

Kitty

[Guest guest]

I just realized that in error I stated the incorrect PTU I have been taking

for the past year. It should read, 50mg PTU x2 each day.

So sorry

Cher

[Guest guest]

Hi Cher, that's still a low dose, and with dietary changes you should be able

to lower it even more.

[Guest guest]

In a message dated 1/15/2004 12:51:43 PM Central Standard Time,

daisyelaine@... writes:

Hi Cher, that's still a low dose, and with dietary changes you should be able

to lower it even more.

Thanks Elaine!

I have made alot of changes this past year. 's site provided the

information I needed to adjust the vitamins and minerals I have been taking for

28

years. I've also added the goitrogens last Fall thanks to this list. With some

simple changes in diet, I know I can reduce the iodine intake too. My next

appointment is in April and will not have labs until then. But, just when does

one

know when they are ready to lower their dosage?

There's great info on AACE, Thank you very much!

Cher

[Guest guest]

Hi,

You'll be wanting to lower your dosage when your FT4 and FT3 are at mid-range

or lower. Most people do best with thyroid hormone levels near the higher end

of the normal range. Symptoms are also important. If any hypo symptoms

develop the ATD dose is generally lowered. Take care, Elaine

[Guest guest]

Elaine, Thanks again for for all the info you shared. I really am hopeful and

determined to do the best I can!

Cher

CherA318@...

Stop and Smell The Roses!

*********************************

Life is not measured by the number of breaths we take,

but by the moments that take our breath away.

[Guest guest]

Kitty,

You MUST get a copy of your labs. The tests you need to have done, if you

haven't already, are Free T3, Free T4 and TSH. Never take a " you are fine "

from the doctor without seeing your numbers yourself. There is a range of

what's considered normal, and you may feel vastly different at one end vs.

the other within that range. Each one of us has a point at which we feel

best. It sounds like you are hypO right now, and if so, synthroid would be

the remedy. 20% of those with GD move into hypOT.

At 07:15 PM 2/29/2004, you wrote:

>Hi Elaine and everyone!

>

>My bf not so long ago suprised me, with a copy of your book on Graves

>disease, and also a copy of a book called The thyriod solution.

>

>Anyways, when I went back to my endo he gave me the great news my

>thyroid was in the all clear, and I didn't have to see him again BUT

>when I asked him about when my tiredness would go, he said that any

>symptoms I have now have nothing to do with the thyriod.

[Guest guest]

Hi Kitty

I don't have any solutions for you but I needed to tell you that you could

be describing me perfectly. I will be very interesting if you get any

reason or action. You are not alone in this. My doctor continued to pile

on anti depresants and double up the dosage on them when I complained that

I still felt terrible. I am now in the process of reducing all the

medications I am on (excluding eltroxin) and am finding that at least I am

a bit more alert. I go back to my doctor in March but I know no changes

will be made. I had my TSH , FT3 and FT4 tested. My TSH came back at

2.77 (range .35 to 5), and my FT3 was4.2 in a range of 3.5 to 6.2, my FT4

was 17 in a range of 9 to 23. What this tells me personally is that I

need a bit more T3. But I alaready know that I become hyper when my FT4

is at 18 so it's a hard call. I still believe my symptoms are all thyroid

related. Keep on hunting for a solution.

Kate

netsurfer6789 wrote:

> Hi Elaine and everyone!

>

> My bf not so long ago suprised me, with a copy of your book on Graves

> disease, and also a copy of a book called The thyriod solution.

>

> Anyways, when I went back to my endo he gave me the great news my

> thyroid was in the all clear, and I didn't have to see him again BUT

> when I asked him about when my tiredness would go, he said that any

> symptoms I have now have nothing to do with the thyriod.

>

> I also told him that when I type, sometimes the letters in the words

> are mixed up, or when I'm talking to someone, I might say the wrong

> word that is out of context, he said well it could be stress, and if

> it gets worse go and see a neurologist. I also made mention of having

> a swollen neck, with sore glands and a sore throat on several

> occasions, and he said that is nothing to do with the thyriod.

>

> So the next night and morning after, I was very stressed out at the

> fact that I am supposed to be to normal, yet feel very exhuasted, I

> have no concentration for more than 20 minutes at a time, my memory

> is very poor (I never had a good memory in the first place, but now

> it is much worse), I get headaches, I get tired after a trip

> shopping!, I feel stress, and I'm depressed that I can't function

> normally.

>

> So I go to see the GP, my throat had been sore again a few days

> before, and he said well your throat is a bit red but, I can't see

> anything. I suggested a blood test on my b12, iron and a sugar level

> test, and he also checked for my folate.

>

> I told him about all the symptoms I was having, and after looking

> worried when I mentioned the mental problems I was having he said do

> you get fevers? (I think he was referring to Chronic Fatigue Syndrome-

> which I'm starting to wonder if I have)and I said no, so with that

> he wonders if I'm having problems with relationships, work, home,

> etc , I don't answer, so then he then rattles of assumptions that I'm

> a perfectionist, I'm too hard on myself, and some other pycho-babble

> and then says I think that the pressure is comming from with in you,

> all of this without asking a question. He said you have mild

> depression and might need to take some medication!

>

> I said well couldn't I be a bit depressed because of not being 100%

> well? and he said well thats the thing..does the chicken come before

> the egg. So he walks me to the door looking very concerened and say's

> don't be too hard on yourself.

>

> A few days later I phone back, my blood work is all fine,and he says

> just keep doing what you are doing. He wanted to get me off the

> phone, but I ask what about the throat, will that just go away? he

> said thats what I'm counting on. He doesn't mention the depression

> and medication, so I tell him, I'm not depressed, I don't have dark

> moods, or think there is no bright future for me, I don't think I

> need medication,he then shys away from " depression " and says I think

> you are suffering from anxiety, I said I don't think so and he said I

> think you are. What about the tiredness? well the blood tests are

> normal, you having nothing physically wrong with you, if you still

> have it in two weeks, come back and see me.

>

> I'm thinking that it's either the thyriod and it will take some time

> to get back to normal or it is CFS..I don't have the fever, but I

> have the majority of all the other symptoms. Can you shed any light

> on this please?

>

> Thanks,

> Kitty

>

>

>

[Guest guest]

Hi Kitty,

What a thoughtful boyfriend you have.

You have quite a few symptoms that sound like you've moved into

hypothryoidism. With your throat being sore, it could be thyroiditis.

The range for TSH has changed although not all labs have gotten around to

changing their reference range and not all doctors are aware of this change. The

range is now 0.3-3.04, with anything higher than 3.04 indicating

hypothryoidism. Some labs still use a range as high as 5.0, which can be

misleading.

Make sure your thyroid levels were checked again. If they were normal before

it could be that you moved from hyperT to hypoT, which is a common occurrence

in thyroiditis. Ask for copies of your lab results, and make sure you had at

least a TSH and tests for thyroid antibodies. Depression is one of the earliest

symptoms of hypothyroidism, and a painful goiter is common in thyroiditis.

Best, Elaine

[Guest guest]

Wow Elaine, What a story!!

Welcome to the group. Just wanted you to know that you are in my thoughts and prayers for continued improvement in your condition.

Whine all you want..this group will support you. There are many, many very knowledgeable people in this group that can offer you great insight into these autoimmune diseases we all share.

Many of us have learned more about our autoimmune diseases from this group than we ever did from all of our Dr.'s.

Take Care, Elaine.

Shirlee (wa state)

[Guest guest]

In a message dated 10/24/2004 6:57:19 PM Eastern Daylight Time, karenw@... writes:

I had no clue that certain types of tumors were related to autoimmunediseases. As I've shared previously, I have several different autoimmunediseases, as does my sister and my 22 year old daughter.

The thymus gland is notorious for causing autoimmune disease. This gland which is part of the immune system, is supposed to shrink away to nothing by puberty but for some reason, in some people it does not. There are about 200 cases a year of thymic cancer so it's fairly rare. I was told that there might be a genetic link to both thymic disease and autoimmune disease, but as far as I know I'm the only one in my family. A simple chest x-ray would show an enlarged thymus.

Regards

Elaine

Long Island, NY

[Guest guest]

Elaine,

My gosh - and I thought I had a complex medical history! I do have a tiny

bit of perspective as to what it must have been like for you. At one point,

my GI doctor kept insisting that my attacks of pancreatitis were being

caused by adhesions and I just needed surgery and all would be well. I also

had a very large incisional hernia that was giving me a lot of problems.

None of the surgeons they sent me to would do surgery to look for the

'adhesions' that were supposedly causing the attacks of pancreatitis because

they didn't agree with the GI. The surgeons all agreed that I needed

surgery on the hernia pretty quickly, but none would do the surgery because

I could have the hernia repaired at the same time I had surgery for the

supposed adhesions causing the pancreatitis. it was a catch 22 situation!

Two of the surgeons that I went to said that I had to have a hepatobiliary

surgeon because doing surgery in the area of the pancreas/bile ducts was

very difficult and dangerous. However, the hepatobiliary surgeon I was

first sent to told me that he didn't think my GI doctor was right about the

adhesions but that if he was, 'any surgeon could do surgery to remove

adhesions and I didn't need him'! He did mostly liver transplants so I

guess 'simple adhesions' were beneath him! Finally, the GI sent me to

another hepatobiliary surgeon. He didn't think adhesions were causing the

attacks of pancreatitis, but he took one look at the hernia and said it

should have been repaired months ago. He said that he would 'look' for

adhesions since he had to repair the hernia. I had surgery the next week.

I ended up having one large incisional hernia and also a small inguinal

hernia in the same area. It ends up that the GI was wrong and there were

absolutely no adhesions anywhere around the pancreas or the biliary system.

That was when the GI finally decided to do the liver biopsy on my 'perfectly

healthy liver'. As I've shared previously, the biopsy showed AIH and stage

3 fibrosis well on the way to stage 4 cirrhosis!

I've since changed to a new GI/hepatologist and have been diagnosed with

both AIH and chronic pancreatitis.

I had no clue that certain types of tumors were related to autoimmune

diseases. As I've shared previously, I have several different autoimmune

diseases, as does my sister and my 22 year old daughter.

I cannot imagine how hard it must have been knowing you had a malignant

tumor but no one wanted to do surgery to get rid of it!

karen W

[Guest guest]

In a message dated 10/26/2004 5:27:54 PM Eastern Daylight Time, dagelo@... writes:

the predominant theory behind autoimmune diseases

Thank you so much for that info. It's very interesting and surprising that you learned it in 1974. In the 70's and 80's, I suffered a lot of strange "allergic reactions" which I now believe were autoimmune responses. Back then no one talked about autoimmune disease, and if they did it was usually in regard to HIV.

I sometimes wonder if this might have something to do with my getting chicken pox as an infant (3 months old).

Regards

Elaine

[Guest guest]

When I was a student at UF, I was taught that the predominant theory behind autoimmune diseases was this:

As a fetus, all the cells of the body pass through the thymus gland and are "tagged" as belonging to this body. If a cell or a few cells do not get "tagged", an autoimmune response, similar to the way the body reacts to a foreign cell can occur. The normal cells do not recognize foreign cells and try to attack them...if they become overwhelming, the immune system cannot operate appropriately and an autoimmune disease may become apparent. This is how it was explained to me in 1974. A genetic or family history was also mentioned.

Re: [ ]Elaine

In a message dated 10/24/2004 6:57:19 PM Eastern Daylight Time, karenw@... writes:

I had no clue that certain types of tumors were related to autoimmunediseases. As I've shared previously, I have several different autoimmunediseases, as does my sister and my 22 year old daughter.

The thymus gland is notorious for causing autoimmune disease. This gland which is part of the immune system, is supposed to shrink away to nothing by puberty but for some reason, in some people it does not. There are about 200 cases a year of thymic cancer so it's fairly rare. I was told that there might be a genetic link to both thymic disease and autoimmune disease, but as far as I know I'm the only one in my family. A simple chest x-ray would show an enlarged thymus.

Regards

Elaine

Long Island, NY

[Guest guest]

Yes, an allergen (foreign substance) makes the body form antibodies (to attack the allergen), and if the immune system cannot successfully eliminate all of the allergen, an allergic situation occurs. Allergies and autoimmune processes are very similar.

Re: [ ]Elaine

In a message dated 10/26/2004 5:27:54 PM Eastern Daylight Time, dagelo@... writes:

the predominant theory behind autoimmune diseases

Thank you so much for that info. It's very interesting and surprising that you learned it in 1974. In the 70's and 80's, I suffered a lot of strange "allergic reactions" which I now believe were autoimmune responses. Back then no one talked about autoimmune disease, and if they did it was usually in regard to HIV.

I sometimes wonder if this might have something to do with my getting chicken pox as an infant (3 months old).

Regards

Elaine

[Guest guest]

Elaine I often experience some of the same symptoms from before dx even though my labs are normal and I am on meds. I don't know if this helps but some of my docs tell me it could be form my body fighting something as simple as a cold to the weather. This includes aching joints, tiredness, a general feeling of being unwell almost fluy.

the WV hillbilly

[Guest guest]

In a message dated 1/30/2005 4:36:40 PM Eastern Standard Time, brendacat1962@... writes:

Elaine I often experience some of the same symptoms from before dx even though my labs are normal and I am on meds.

Thank you that is helpful. I do too but my doctors look at me like I'm crazy. I think they are getting tired of all my complaints and keep bouncing from one doctor to another.

Regards

Elaine

Long Island NY

[Guest guest]

I hope you get a doctor that will take you seriously. I had trouble and switched docs a couple of times but now they listen when I tell them something doesn't feel right.

the WV hillbilly

[Guest guest]

In a message dated 1/31/2005 11:09:51 AM Eastern Standard Time, cheryl722@... writes:

Don't let the doctors try and make you feel you dont know what you are talking about. You know your body better than anyone.

Cheryl & Randy

Thank you Cheryl. I'm so sorry to hear about Randy's trouble getting diagnosed and I can certainly relate to his experience.

I had a follow up today with my radiation oncologist. We talked for quite a while about this terrible pain I have in my chest. I've been worked up for cardiac, liver, pulmonary, including x-rays, EKG's, and CT Scans. Everything came back normal yet here I am in terrible pain for several weeks. After listening to me describe the pain he thought the problem may be compression fractures in my spine with possible compression of some nerves. He said with liver disease and being on prednisone for almost 2 years this would not be surprising. It was like a light went off in my head. Everything he said made perfect sense.

This doctor treated me with radiation following the removal of my thymic tumor. He had nothing to do with my liver. Yet he was the only one to "think outside the box" so to speak. Whether or not his opionion is correct, I am so grateful that he listened and come up with some alternatives without passing me on to the next guy.

I don't know if it's coincidence or what, but my (regular) oncologist was instrumental in getting my liver disease diagnosed. Now my radiation oncologist is helping with this. My two oncologists are my best doctors.

I'm going for an MRI on Wednesday and I will keep you all posted.

Regards

Elaine

Long Island NY

[Guest guest]

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

From: cheryl722@...

> All those years doctors thought it was in his head, sent him to see a shrink, told him he was a hypocondriac, told him he was a "closet" alcoholic who wouldnt admit he had a drinking problem (he only went out with his friends a couple times a month and only had a couple of beers each time), sent him back to the shrink, and finally he felt awful one day, went to doctor, had gained 25lbs in 3 days and turned yellow. Finally, the doctors listened! By then his liver was past repair.

Can we spell L-A-W-S-U-I-T?

Nina

[Guest guest]

Is that typical or WHAT???I hope they went after the creep!

Debby

Re: [ ]

Elaine

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

From: cheryl722@...

> All those years doctors

thought it was in his head, sent him to see a shrink, told him he was a

hypocondriac, told him he was a " closet " alcoholic who wouldnt admit

he had a drinking problem (he only went out with his friends a couple times a

month and only had a couple of beers each time), sent him back to the shrink,

and finally he felt awful one day, went to doctor, had gained 25lbs in 3 days

and turned yellow. Finally, the doctors listened! By then his

liver was past repair.

Can we spell L-A-W-S-U-I-T?

Nina

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[Guest guest]

In a message dated 1/31/2005 9:22:00 PM Eastern Standard Time, tdcc2000@... writes:

Is that typical or WHAT???

I don't know if Cheryl's experience is typical but back when doctors were still searching for the cause of my severe jaundice, I had one doctor (infectious diseases) ask me if I was using any veterinary drugs, either recreationally or to save money since human medications are so expensive. The reason he asked (more than once) is because hubby and I are in the pet supply business. How do you respond to a question like that? While I was trying very hard to keep a straight face, I could see my husband in the background imitating a dog in the "lifted leg" position. I assured this guy that 1) I have never used any veterinary medications and 2) veterinary medications tend to be twice the price of human equivalents.

Well that's it for now--I feel an urge to go sniff some flea spray (eeewwwww).

Elaine

Long Island NY