Kimmer-Hyperthyroid

October 1, 2004

Thank you , Topper and for you responses, I am a 36 yr.

old Female. I'm 5'6 and have been on the thin side all my life.

Until I got extremely sick in 2002 or so. , you're right, I had

about 4 major emotional upsets in my life in a short period of time,

and I haven't been the same since. I am a hairstylist, cutting hair

for 15 years, until the pain got so bad I had to collect on my 2 yr.

private disability plan that is over in November!! Aack!! Ready or

not, here I go. I have pain in my neck, face, shoulders and arms,

controlled now with a Duragesic patch. I have been able to cut down

on pain meds just lately, but my pain is controlled. I got shingles

shortly after the big 'upsets', and was put on neurontin besides the

med for shingles,(which went away). Anyway, at this point I went

from 125 lbs. to 155 in a matter of two weeks, My husband thought I

was sneaking twinkies in the closet. He actually watched everything

I put in my mouth for days because he couldn't believe what he was

seeing. Alot of things happened, but amoung them, I was sent to a

neurosurgeon after a MRI, because they say I have cervical stenosis

(neck),

He wanted to do surgery on my spine, and I asked for more tests. I

had a Mylogram, in which they put dye in your spinal fluid at the

base of the spine, let it run up to the top, and do a cat scan. The

fluid wouldn't move up my spine, but they got enough info that I

didn't have surgery, which was the LAST thing I am ever going to do.

Since then I have heard the Hyperthyroid with a small goiter, can

really leach out moisture. I and my husband both think this is the

reason for my blood pressure drops, pain in the face, neck side of

head, loss of dexterity in hands. Because maybe my spinal fluid

dried out. I say this because one of the real improvements I had was

when I was eating flax seed oil, it seemed to really help. I have

had episodes of blood pressure drops to where I pass out since I was

16. I flunked a tilt table test, which is how they test

for 'neurally mediated syncope' I was on beta blockers and I hated

them, they exhausted me. Until recently, I was on a medicine called

Midodrine for this. It wasn't helping any longer, at the highest

dose my bp was dropping to 90/60. So I asked what the alternative

was, they said Florinef, I did research, and requested a cortisol

level test. This led to an inaccurate ACTH test and a thyroid test

at the endo. I had a TSH and free T4 test before and it supposedly

came back normal at my general doc's. At the time of the ACTH test

and the thyroid tests at the endo, (2 mos. ago) I hadn't had a period

for 3 months. Endo put me on 50 mg. PTU, I had a period and am now 2

weeks late. I have been losing weight, people are shocked that

haven't seen me. 1'm at 126 lbs. losing about 4 lbs a month. I eat

a good diet, when I can eat at this point, although my appetite is

improving, it was like my tounge and throat and gag reflex were

rejecting every bite of food. Rapid heart beat, 90 to 120 beats a

min until 2 days ago, today is Fri., Wed. was still bad as far as not

being able to get a breath, rapid heart rate and agitation,

irritability. The test results I have as of Wed., are T4 1.6,

cortisol at 3:45 p.m. 4.8 (endo says this is normal for time of day,

and TSH less than .01--She trpled my PTU over the phone, 50 mg every

8 hours. I take it at 4 a.m. when my husband wakes up, noon, and at

8 p.m. Today I actually feel better as far as heart rate and

breathing go. And eating. I will call endo Monday and have all labs

sent and let you know. I've been fighting tooth and nail for my

health for three years now, and I won't not ask something if I know

what to ask. Sorry for the book, scary to say, I don't really

remember everything I've gone through, but I do feel like I'm maybe

on the right track, as complicated as it might be. OH-I take .1 mg

florinef every third day, as every other day made my left foot and

lower leg swell. I figure it might be good to keep a little fluid if

the moisture leeching thing is true. Thanks for having a place where

people can find the way with this, it is appreciated, and I hope I

haven't been too confusing. Kimmerleeblue

October 1, 2004

You haven't been confusing, Kimmer.. you just let it loose.. the more you tell us, the more pieces we'll have to put together... Lots of eyes here, you know!!!

I'm gonna ramble a bit... Just to throw things in the air to see what you may spot.....

I was hyper for about 20 years. But until I stormed I was always a pretty big person. I started body building for a number of reasons but didn't have a BMI done until I was refused life insurance on the grounds of gross obesity. I had the test done twice... both times I came up at 21%. Below 20% is considered underweight and unhealthy for a woman at the age I was at the time. The insurance company said that I had to lose something line 130 pounds.. I would have had to drop about 100 pounds of muscle.. something outrageous like that.... No way.. I'd been working too long to build up....

Anyway.. things that I noticed (20/20 hindsight) as I started moving into storm was the shaking, the muscle pain - enough to cause me to stop working out. An almost frantic need to know EVERYTHING about ANYTHING around me.

I'm bouncing and rambling... hope you can hang on for the ride....

You mention pain in face, neck, shoulders and arms... have they said anything about tendonitis? When I finally went back to the doc, after being blown off by the first one, I went to see an orthopedist. I was having terrible pain in my shoulders and one day could not physically pick up the side door on my truck at work. With either arm. When I got to the doc she had me sit on the exam table and take off my shirt. She demonstrated the motions that she wanted me to make.. in just a matter of seconds she said tendonitis.... from there she asked questions and checked my chart and diagnosed hyper. She ordered tests and sent me to the hospital... my point.... the rapid twitching of muscles caused by the elevated thyroid levels can cause tendon damage... could that be the pain that you are experiencing. Not to belittle your pain.. it's there, I have no doubt... but a pain reliever will not take care of the problem if this is still related to the hyper state.

Remind me, again, of what tests they have run to determine the abnormal thyroid function. I know the symptoms SUCK but finding out the cause of the symptoms and dealing with that will be far more effective than dealing with individual symptoms.

Please.. hang in with me... don't be mad.. I'm trying to tweak your brain, flex mine, and see if any thoughts come to any of the others that are reading this. Not many of us have been through hyper for any length of time....

I get a very basal fear when I see a situation where first impression implies a doc that is not trying to find the cause, but only push more meds to mask symptoms.... (and I'm the first to admit that I have seen that in places where it was not the case - that's why it's good to have so many knowledgeable folks looking through things) Thyroid disease is considered a 'bread and butter' disease... I could just puke every time I think of that. I read that in a newsgroup over two years ago.... They can pump all kinds of meds into you to make symptoms bearable, but not quite kill you off... just make you desperately return in an attempt to find the magic pill....

I'd really really like to see all your labs.. what they've checked, what the numbers look like....

Keep jotting down anything that you think of.... as we piece stuff together and volley stuff back and forth we may start spotting stuff that you may not have noticed before.

Topper ()

On Fri, 01 Oct 2004 23:46:54 -0000 "kimmerleeblue" writes:

Thank you , Topper and for you responses, I am a 36 yr. old Female. I'm 5'6 and have been on the thin side all my life. Until I got extremely sick in 2002 or so. , you're right, I had about 4 major emotional upsets in my life in a short period of time, and I haven't been the same since. I am a hairstylist, cutting hair for 15 years, until the pain got so bad I had to collect on my 2 yr. private disability plan that is over in November!! Aack!! Ready or not, here I go. I have pain in my neck, face, shoulders and arms, controlled now with a Duragesic patch. I have been able to cut down on pain meds just lately, but my pain is controlled. I got shingles shortly after the big 'upsets', and was put on neurontin besides the med for shingles,(which went away). Anyway, at this point I went from 125 lbs. to 155 in a matter of two weeks, My husband thought I was sneaking twinkies in the closet. He actually watched everything I put in my mouth for days because he couldn't believe what he was seeing. Alot of things happened, but amoung them, I was sent to a neurosurgeon after a MRI, because they say I have cervical stenosis (neck), He wanted to do surgery on my spine, and I asked for more tests. I had a Mylogram, in which they put dye in your spinal fluid at the base of the spine, let it run up to the top, and do a cat scan. The fluid wouldn't move up my spine, but they got enough info that I didn't have surgery, which was the LAST thing I am ever going to do. Since then I have heard the Hyperthyroid with a small goiter, can really leach out moisture. I and my husband both think this is the reason for my blood pressure drops, pain in the face, neck side of head, loss of dexterity in hands. Because maybe my spinal fluid dried out. I say this because one of the real improvements I had was when I was eating flax seed oil, it seemed to really help. I have had episodes of blood pressure drops to where I pass out since I was 16. I flunked a tilt table test, which is how they test for 'neurally mediated syncope' I was on beta blockers and I hated them, they exhausted me. Until recently, I was on a medicine called Midodrine for this. It wasn't helping any longer, at the highest dose my bp was dropping to 90/60. So I asked what the alternative was, they said Florinef, I did research, and requested a cortisol level test. This led to an inaccurate ACTH test and a thyroid test at the endo. I had a TSH and free T4 test before and it supposedly came back normal at my general doc's. At the time of the ACTH test and the thyroid tests at the endo, (2 mos. ago) I hadn't had a period for 3 months. Endo put me on 50 mg. PTU, I had a period and am now 2 weeks late. I have been losing weight, people are shocked that haven't seen me. 1'm at 126 lbs. losing about 4 lbs a month. I eat a good diet, when I can eat at this point, although my appetite is improving, it was like my tounge and throat and gag reflex were rejecting every bite of food. Rapid heart beat, 90 to 120 beats a min until 2 days ago, today is Fri., Wed. was still bad as far as not being able to get a breath, rapid heart rate and agitation, irritability. The test results I have as of Wed., are T4 1.6, cortisol at 3:45 p.m. 4.8 (endo says this is normal for time of day, and TSH less than .01--She trpled my PTU over the phone, 50 mg every 8 hours. I take it at 4 a.m. when my husband wakes up, noon, and at 8 p.m. Today I actually feel better as far as heart rate and breathing go. And eating. I will call endo Monday and have all labs sent and let you know. I've been fighting tooth and nail for my health for three years now, and I won't not ask something if I know what to ask. Sorry for the book, scary to say, I don't really remember everything I've gone through, but I do feel like I'm maybe on the right track, as complicated as it might be. OH-I take .1 mg florinef every third day, as every other day made my left foot and lower leg swell. I figure it might be good to keep a little fluid if the moisture leeching thing is true. Thanks for having a place where people can find the way with this, it is appreciated, and I hope I haven't been too confusing. Kimmerleeblue

October 1, 2004