Re: Mixed Symptoms

[Guest guest]

Hi Devin,

Welcome to the group! If you have not had TSI and TPO antibody tests done on

you yet then I would highly recommend you get them done. My uptake was in

the 70's, so yours of 35% looks normal or low to me. I can't remember what

the normal uptake is. I believe Elaine has an article on www.suite101.com on

pretibial myxedema that may be of interest to you.

You've found a good group to learn from here!

Good luck,

Doris

[Guest guest]

Devin,

There are a number of people (including myself) who gained weight

while hyper. Initially I was 95 pounds, then balooned up to 140 and

now I'm balanced and in remission at 120 pounds.

Also, after a few years of running hyper, I was seriously

fatigued. Had severe joint and muscle aches and felt exhausted every

day. So I think it's not uncommon for those things to go with hyper.

I also had strange bumps and rashes which turned out to be

food allergy related. I had those allergies and coeliac disease along

with the Graves so I had a lot of extra symptoms related to that.

It's important to remember too, that your lab work need not be exactly

in the so called " normal " range to have Graves. Everyone is extremely

unique in terms of the levels where they feel best.

As for an asymetric gland, I'm not sure what that means. There are

others here who know a lot more than I. I'm sure they will pop in.

Anyhow, Welcome. It sounds like you;ve come to right place.

Val

[Guest guest]

Hi Devin,

Welcome to this group! Lots of new people lately, I'm glad you have found

us, but hate to see why you have to be here.

As for the symptoms, they can cross over, nothing on them is written in

stone. There are many people here who did gain weight while hyper, so that

is pretty common. For me, before having graves and beginning to learn about

it, my total knowledge of thyroid was:

Your skinny, you must be hyper

or

Your fat, you must be hypO

And I knew it was somewhere in the neck. It is unfortunate, but I believe

that is most peoples knowledge of thyroids until they are faced to learn

about it...it is why people do not understand what we go through.

Ask your doctor to run the TSI, TPO and TRAb antibodies on you. This will

give you a better chance at a more definitive answer...though some of us

don't always show up the antibodies in the beginning.

A couple of books I would recommend are The Thyroid Solution, by Dr. Ridha

Arem, a great overall thyroid book

and

Graves Disease; A Practical Guide by Elaine . A graves specific book

that will teach you so much about what we need to know to become proactive

in our treatments. The labs, the treatments, alternatives, other people who

have shared their journey's with their chosen <and in some cases forced upon

them; RAI> treatments. This book is wonderful!

You can get both through barnesandnoble.com with at least a 20% discount,

and if you order both, free shipping, and they usually ship within 48 hours.

Keep reading, keep asking questions, and make no permanent treatment choices

until you really understand the pro's and con's of each.

Your PM will clear up when your levels become more normal for you. Others

here will speak more on that. I believe Elaine has had to deal with this

also.

When do you see your doctor again? Make sure he starts you one of the atd's

<MMI, TAPAZOLE or PTU> to begin bringing your thyroid levels to a more

euthryoid place and don't let him push you inot RAI by telling you, one pill

will kill the thyroid, and one more little pill everyday for the rest of

your life will make you feel great, problem solved. THAT is the biggest lie

they tell us! Do your homework. Diet, stress reduction and education are

your best allies!

Take care,

Jody

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Val,

I too have had weight gain and am up to 140lbs! My normal weight was 120 before

Graves. This confused me because I always thought as most of you did that

hyperthyroid people loose weight not gain. What made you loose the weight you

had gained? Was it going on the ATD's? I am still considering my treatment

options, but fear I will have to make a decision soon since the beta blockers

are not even controlling my palpitations right now.

-

~For Excellent Educational and Children's Books ~visit my site below:

http://www.ubah.com/D1226

Re: Mixed Symptoms

Devin,

There are a number of people (including myself) who gained weight

while hyper. Initially I was 95 pounds, then balooned up to 140 and

now I'm balanced and in remission at 120 pounds.

Also, after a few years of running hyper, I was seriously

fatigued. Had severe joint and muscle aches and felt exhausted every

day. So I think it's not uncommon for those things to go with hyper.

I also had strange bumps and rashes which turned out to be

food allergy related. I had those allergies and coeliac disease along

with the Graves so I had a lot of extra symptoms related to that.

It's important to remember too, that your lab work need not be exactly

in the so called " normal " range to have Graves. Everyone is extremely

unique in terms of the levels where they feel best.

As for an asymetric gland, I'm not sure what that means. There are

others here who know a lot more than I. I'm sure they will pop in.

Anyhow, Welcome. It sounds like you;ve come to right place.

Val

[Guest guest]

In a message dated Sun, 14 Jul 2002 2:38:59 PM Eastern Standard Time,

vze47vfr@... writes:

> Has anyone had such a mix of symptoms (hyper and hypo)?

> Has anyone hyper put on weight?

Hi Devin,

Welcome to the group! I had to laugh at your calculating the percentages of

your hypo/hyper symptoms. This group is certainly heavy on Type A

personalities! ;-)

Well, I wanted to figure out my percentages. Reading through them, it felt like

I had just about every symptom from both lists. Here are my results: 74%

hyper, 60% hypO. I also have weight gain from 105 to nearly 140. What is it

about 140? Several of us seem to hover around that mark. I for one am tired of

gaining weight and am searching for a healthy way of eating & exercising that

doesn't cause additional problems for us Gravesians. I don't understand why

hypers can gain weight. It seems to me that if your metabolism is elevated,

you'd lose weight despite eating everything in sight. Oh well, I'm determined

to lose the weight at some point.

Take care, I hope you start feeling better soon.

Tori

[Guest guest]

Devin,

I am hyper and have put on weight, but not a lot.

It is because my appetite is ENORMOUS and I am

too dizzy to get around well. This is not so

rare, is a well documented occurence.

With such low TSH, it seems very unlikely you

will be hypo. It seems they should give you a

Thyroid anibody Panel though (anti-TPO) to see

what is CAUSING you to be hyperthyroid. I am

still in the new stages of getting diagnosed, I

am sure the veterans can say whether I got this

wrong.

Best Of Luck.

Kit

--- vze47vfr wrote:

>

> I joined this group last Tuesday, when I was

> diagnosed with Graves Disease. I rather

> strangely backed into this diagnosis - since I

> was just a guy who was trying to figure out

> what these strange bumps on my leg were. I

> started a year ago on this quest with a PCP. I

> finally got a referral. The Dermatologist was

> stumped. She ordered general bloodwork (and

> biopsy, see below), and then ordered more

> bloodwork. That bloodwork included TSH (the

> first showed only slight anemia). My TSH was

> undetectable (<0.01). My T3 and T4 are high to

> high normal (T4 free calc is 3.7, T4 total is

> 10.3, T3 uptake is 35.9%, T4 free is 1.8, and

> T3 total is 174). Presumably, I have

> hyperthyroidism. After a bounce off my PCP, I

> made it to an endocrinologist last Tuesday.

> They are calling my leg problem pretibial

> myxedema. A previous biopsy revealed

> " Prominent Mucin in the Superficial Reticular

> Dermis (microscopic slide/stains). " So far I

> haven't noticed any eye problems - though my

> eyesight has always been bad (= coke bottle

> glasses), and I have mold allergies( = weeks of

> crusties and irritation a couple times a year).

> An iodine (I-123) thyroid scan and uptake test

> Thursday and Friday showed no cancer (or any

> nodules), an asymmetric thyroid gland, and an

> uptake of about 35%.

>

> My concern here is that I've gone over the

> Group's Extended Symptoms List and I matched 23

> out of 56 (41%) hyper symptoms AND 9 out of 27

> (33%) hypo symptoms. I have severe heat

> intolerance and sweat excessively, but a

> distinct miss on the hyper list is that I've

> gained weight in the last year. At the same

> time, it's the lack of energy I really notice

> in the last year, especially in the afternoons

> and evenings. I've even fallen asleep at work

> and in conversations. Meanwhile, I've found

> that pretibial myxedema usually involves mucin

> in the lower, not upper (superficial) dermis.

> Still no amount of research seems to find

> anything closer to my lab results and symptoms

> than Grave's Disease, and every road quickly

> links back there.

>

> Has anyone had such a mix of symptoms (hyper

> and hypo)? Has anyone hyper put on weight?

> What does an asymmetric thyroid gland mean?

>

> Devin

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

140 pounds seems to be the magic number, that is

what I weigh now. I did get up to 160 winter

before last, but a whole lot of that was bloating

from celiac disease.

I am thinking that my trip to the hospital

weekend before last might have been something

more closely related to thyroid storm than some

anxiety attack. My hands were definetly not

clammy, I was very hot, and my heart rate

although erratic was between 90 and 150 the whole

time I was there, and I stayed overnight. Those

idiots didn't know squat about hyperthyroidism, I

could have died in there. I specifically asked

the nurse in my doctor's office if there was

anything bad that could happen to me as a result

of the really low TSH, she said " no. " NO! NOT a

freaking thing! I was a basket case, and for

good reason, maybe.

I can't wait until tomorrow morning, I am going

into the office straight away and get a referral

for an endo.

Kit

--- The Zelinski Family

wrote:

> Val,

>

> I too have had weight gain and am up to 140lbs!

> My normal weight was 120 before Graves. This

> confused me because I always thought as most of

> you did that hyperthyroid people loose weight

> not gain. What made you loose the weight you

> had gained? Was it going on the ATD's? I am

> still considering my treatment options, but

> fear I will have to make a decision soon since

> the beta blockers are not even controlling my

> palpitations right now.

>

> -

>

>

> ~For Excellent Educational and Children's Books

> ~visit my site below:

> http://www.ubah.com/D1226

>

>

> Re: Mixed Symptoms

>

>

> Devin,

>

> There are a number of people (including

> myself) who gained weight

> while hyper. Initially I was 95 pounds, then

> balooned up to 140 and

> now I'm balanced and in remission at 120

> pounds.

>

> Also, after a few years of running hyper, I

> was seriously

> fatigued. Had severe joint and muscle aches

> and felt exhausted every

> day. So I think it's not uncommon for those

> things to go with hyper.

>

> I also had strange bumps and rashes which

> turned out to be

> food allergy related. I had those allergies

> and coeliac disease along

> with the Graves so I had a lot of extra

> symptoms related to that.

>

> It's important to remember too, that your lab

> work need not be exactly

> in the so called " normal " range to have

> Graves. Everyone is extremely

> unique in terms of the levels where they feel

> best.

>

> As for an asymetric gland, I'm not sure what

> that means. There are

> others here who know a lot more than I. I'm

> sure they will pop in.

>

> Anyhow, Welcome. It sounds like you;ve come

> to right place.

> Val

>

>

>

>

[Guest guest]

Hi Devin -

Welcome to the group! It's not uncommon for some of the symptoms to " cross

over " both hypo and hyper. Everyone is different and experiences this

disease in different manifestations. There are several people here who have

gained weight when hyper, so that isn't so unusual. The lack of energy can

be caused by the fact that your body is running at kind of a higher " speed " ,

which can make you feel tired and worn out. Another common symptom between

hyper and hypo is joint pains. That was one of the first symptoms I had.

As for the asymmetric gland, mine was mildly asymmetric, and the doc didn't

seem to think that was remarkable, never said anything bad about it, just

that it was that way. How is your heart rate? That is one of the more

serious symptoms of hyper. Our heart rates can be rather high, which can

cause heart troubles down the road. If you pulse is regularly high or you

have palpitations, you should see you doc about getting on a beta-blocker

until you get on medication for the Graves'. I agree with everyone else who

has already said it - press for antibody testing. Not only will it give you

a more definitive diagnosis, but it will help you down the road to determine

remission.

Most of your labs are only slightly above normal, and your iodine uptake

scan of 35% is pretty close to my initial scan of 36% - and my doc told me I

was a mild case. So it sounds like you caught this pretty early on in the

course of the disease, which is good! You may have a better chance at

achieving remission.

Definitely ask about starting ATDs when you see your doctor and read all you

can about Graves' in the meantime. Things to look for in a _good_ doc when

discussing ATDs - you should have a liver enzyme panel done _before_ you

start them. A rare side effect of ATDs is that they may cause liver

problems, so having testing before will give you a baseline with which to

compare. Once starting ATDs, you should have repeat labs (liver panel and

thyroid hormone levels) about every 6 weeks so you can make dosage

adjustments if needed. Some docs don't monitor that frequently and let

patients go way too hypo on the meds, then they convince the patient the

ATDs aren't so good and you should have RAI. Don't fall for that unless you

are sure you want to have RAI.

Don't know much about the myxedema, so can't be of much help here. Always

get copies of you labs and attach a note of how you feel to each one. This

will help you later on in determining the " right " level for you. Another

important thing that docs don't always tell you. TSH is a unreliable test in

autoimmune thyroid diseases. The same antibodies that attack the thyroid

(and your skin cells in the myxedema) also fool the pituitary (where TSH is

secreted) into thinking no more TSH is needed. Thus, the TSH can be

suppressed for months, even years after the thyroid hormones (T4 and T3)

have come back down to normal range. So if you get a doctor who only wants

to monitor with TSH levels, find a new doctor quickly! My previous doc did

this - wanted me to have RAI because my TSH was .01, but all my T4 and T3

levels were normal! My new doc thinks the old doc didn't have a clue (he

didn't).

Everyone's given you such good advice already, now you're probably swimming

in info! The best thing to remember is not to make any permanent decisions

on your treatment until you learn all about the options and the pros and

cons of each.

Good luck!

Mixed Symptoms

>

> I joined this group last Tuesday, when I was diagnosed with Graves

Disease. I rather strangely backed into this diagnosis - since I was just a

guy who was trying to figure out what these strange bumps on my leg were. I

started a year ago on this quest with a PCP. I finally got a referral. The

Dermatologist was stumped. She ordered general bloodwork (and biopsy, see

below), and then ordered more bloodwork. That bloodwork included TSH (the

first showed only slight anemia). My TSH was undetectable (<0.01). My T3

and T4 are high to high normal (T4 free calc is 3.7, T4 total is 10.3, T3

uptake is 35.9%, T4 free is 1.8, and T3 total is 174). Presumably, I have

hyperthyroidism. After a bounce off my PCP, I made it to an endocrinologist

last Tuesday. They are calling my leg problem pretibial myxedema. A

previous biopsy revealed " Prominent Mucin in the Superficial Reticular

Dermis (microscopic slide/stains). " So far I haven't noticed any eye

problems - though my eyesight has always been bad (= coke bottle glasses),

and I have mold allergies( = weeks of crusties and irritation a couple times

a year). An iodine (I-123) thyroid scan and uptake test Thursday and Friday

showed no cancer (or any nodules), an asymmetric thyroid gland, and an

uptake of about 35%.

>

> My concern here is that I've gone over the Group's Extended Symptoms List

and I matched 23 out of 56 (41%) hyper symptoms AND 9 out of 27 (33%) hypo

symptoms. I have severe heat intolerance and sweat excessively, but a

distinct miss on the hyper list is that I've gained weight in the last year.

At the same time, it's the lack of energy I really notice in the last year,

especially in the afternoons and evenings. I've even fallen asleep at work

and in conversations. Meanwhile, I've found that pretibial myxedema usually

involves mucin in the lower, not upper (superficial) dermis. Still no

amount of research seems to find anything closer to my lab results and

symptoms than Grave's Disease, and every road quickly links back there.

>

> Has anyone had such a mix of symptoms (hyper and hypo)? Has anyone hyper

put on weight? What does an asymmetric thyroid gland mean?

>

> Devin

>

>

>