Hello & introduction

[Guest guest]

My name is , I was diagnosed in December, 1992 with CMT.

So was my daughter, , who was 4 at the time. My son,

Andy was diagnosed in 1994 at the age of nine. They are doing

very good. They both wore AFOs for a couple of years, but no

longer need them. I,on the other hand, am not doing very well.

I am dizzy all the time, I no longer drive, because I can't stand

to have anything move in front of my eyes. In the last 18 months

I have been diagnosed with Raynauds syndrome, lactose intolerance,

fructose intolerance, and wheat/gluten intolerance. I am having

major digestive problems. Now they tell me it is all from my CMT.

They say my autonomic nervous system is shutting down. I was just

wondering if any body else has digestive problems. They keep trying

different kinds of medicines but reading info on the meds, I think

I would like to stop taking some and see what happens, but the

different doctors say no.

[Guest guest]

,

You wrote:

>

> ... TSH was at 8.996 and she has started me on 0.88 of Synthroid. ...

Don't be surprised if the improvement at your starting dose does not

last very long. You should be retested in 6 weeks or less, at which time

the dosage will very likely be increased. This is the normal procedure

for building up the dosage. Increasing too fast is dangerous.

BTW, 0.88 is not possible. It is probably 88 micrograms (mcg) or 0.088

mg. If 880 mcg, it would kill you, and 0.88 mcg is not one of the

manufactured dose options.

Many of your symptoms are tied to hypothyroidism, so you may be headed

for some real healing long term. I hope that is the case for you.

Chuck

[Guest guest]

Hi Chuck,

>Don't be surprised if the improvement at your starting dose does not last very

long. You should be retested in 6 weeks or less, at which time the dosage will

very likely be increased. This is the normal procedure for building up the

dosage.

That's good to know. I had learned that I would want retesting and may need to

increase but hadn't found yet what type of time frames to look at. For all I

knew, I was supposed to do that after a year. LOL This way if I start feeling

better, then suddenly feel like I am having a " relapse " , I'll know why.

>Increasing too fast is dangerous.

That's definitely good to know! Although my doctor is wonderful and I trust her,

mistakes can be made by nurses, techs etc... I like knowing things like that so

I know what to look for and expect so if anything looks wrong, I know to

question it. My pharmacist teases me because if I pick up a prescription and the

pill looks different, I am right there double checking. Of course, it's usually

just due to a change in manufacturer, but I'm really careful about things like

that... mistakes can happen and I'd rather not become a statistic of one. LOL

>0.88 is not possible. It is probably 88 micrograms (mcg) or 0.088 mg. If 880

mcg, it would kill you, and 0.88 mcg is not one of the manufactured dose

options.

I'm sure either the pharmacy tech mis-spoke or I misunderstood. I haven't picked

it up yet, getting it today. That's just what I heard when I called the pharmacy

to ask what medication and dosage had been called in. I'm guessing it's the .088

because I know I heard her say a " point " in the figure. I will be sure to double

check the actual dosage when I pick it up.

>Many of your symptoms are tied to hypothyroidism, so you may be headed for some

real healing long term. I hope that is the case for you.

That's what I am hoping too! Even though each has other symptoms as well... the

Hypothyroidism, Fibromyalgia and Hepatitis C... ALL of these have fatigue and

muscle aches as symptoms. Over the years, as we got the Fibro and HepC treated

and stabilized and most symptoms cleared, those two symptoms have improved by

measures but still was just not quite enough to get me functioning very well. We

are really hoping that this is the final piece to the puzzle and may make a

substantial difference.

Thanks for the welcome and the information.

a

M

[Guest guest]

look at http://www.drlowe.com about fibro

IMO all your diseases and symptoms are adrenal/thyroid

Standard thyroid treatment is TSH test and T4 med but I don't think that is

adequate, especially with fibro. These people have a great need for T3.

Look at http://www.geocities.com/thyroide for more info, books etc. Most of

us have to become our own docs to feel well.

Gracia

>

>

> Hello everyone.. I've just joined your group and am looking forward to

getting to know new friends here as well as learning a lot.

>

> My name is , I'm 40 and live in Oklahoma... transplanted here 10

years ago after being a lifelong Floridian. I'm married and have 2

daughters, aged 20 & 9.

>

> I am diagnosed with Fibromyalgia Syndrome, Hepatitis C, Chronic Migraines,

Gastro-Esophageal Reflux Disease, Irritable Bowel, Overactive Bladder... and

now, as of today... Hypothyroidism. Joy! Just what I needed... something

else added to the list.

>

> Actually in a weird way, I am sort of happy about this diagnosis because I

have finally gotten an answer as to why, even though I am on treatments for

my other problems and supposedly stable, I was still having such horrible

problems with the fatigue. I am very hopeful that the discovery of the

Hypothyroidism may be the final piece of the puzzle and getting it treated,

I might feel better.

>

> That's actually what prompted this discovery, for years off and on, I have

asked doctors about the possibility of thyroid problems due to my weight

issues and they have always just " pooh poohed " the idea, said I was just not

getting enough exercise because of the Fibro and so forth. When I visited my

current (and wonderful) doctor last week, I mentioned to her that I was

frustrated that despite all the medications, I still had days of such

terrible fatigue and also asked her about the weight issues. You see, once I

got on good treatments for the Fibro, I did become more active and dropped

weight quickly, I lost 80 pounds in under a year. But that was 7 years ago,

and I have remained the same weight since then... and that's an extra 50

pounds I still need to work on. The frustrating part is that don't eat

enough to explain it... in fact, on doctors orders I have to force myself to

make sure I eat a minimum amount each day and/or drink Slimfast to be sure I

am getting enough nutrition. Due to the medical problems and medications, I

have very little appetite and when I can eat, I can only eat a few bites

before I am full... or get sick.

>

> So once I told her all this, she was upset... in the time I have been

seeing her, she had assumed that in all those work ups over the years, some

doctor had already checked my thyroid, she was shocked to find out it hadn't

been checked in many, many years. So she ran the tests and sure enough....

new diagnosis, add Hypothyroidism to the pile. My actual TSH was at 8.996

and she has started me on 0.88 of Synthroid.

>

> I'm a member of a wonderful Fibro support group through , and

as many people with Fibro also have Thyroid problems, I talked to them on

there about it today when I found out and one of the ladies recommended this

group. I am one of those people who, when given a new diagnosis or

medication, wants to learn as much as I can about it... so here I am and

looking forward to getting to know you guys.

>

> M

>

>