Re: New to the group

[Guest guest]

No, the 9.31 TSH was back in February of this year, when I went to see this dumb endo. He upped the Levoxyl (for the first time since I ever took my first dose of any thyroied med) from 100 mcgs to 125. I never felt any better than I ever did though. I joined a thyroid support group for several months before I gathered much more info than what I had previously known, to make the change on my own. I found out where to go to get the labs on my own by this group and ordered my own medication. I do have an understanding of all these things, and I work a medical floor. Anyway, I made this change about mid September, then had testing done for Free T3 and Free T4 for the first time ever. My TSH at this time was 38. something (way too high!). It's puzzling that the Free T3 was withing the normal range, yet the Free T4 was way below the normal range. I still don't feel that much better, though I do believe in the natural hormone. I'm thinking that I should be working on getting more T4 to go with it, if my next testing is still going to show that low T4. It's funny that the TSH could be that high, yet the T3 is withing that normal range. Does anyone have any input on this?? Two months hasn't even past since this particular testing. Could it be that it just hasn't been given enough time to retest?

Re: New to the Group

Hi and welcome! You've really been through a hard time of it with lousy doctors! That's crazy that they wouldn't test your thyroid when you were in a hyper stage. I can certainly understand your frustration after everything you've been through with your doctors and trying to get appropriate treatment; however, I would just caution you to be careful about trying to treat yourself without a doctor's guidance and care. It certainly does sound like you have hashi's.

what was your last TSH? Was it the 9.31?

i will talk to you later...I'm falling asleep.Take care and keep in touch! Sheila wrote:

Hello To All

I just joined and have been listening in a bit. I was diagnosed approximately 10 yrs ago, but was having problems 6 or 7 yrs before that, with heavy periods that culminated in a hysterectomy. I went into what I now know was a hyperthyroid state, lost weight down to 113 lbs, ran (from nervousness, etc..) 5-10 miles a day, but still 3 different doctors would not test for thyroid disorders. Instead, I was given tranquilizers by the dozens, having free-floating anxiety for several yrs. Finally (or maybe I shouldn't say finally!), when I headed into a hypo state, I gained around 40 lbs or so, my hair turned to nylon, skin went totally dry, and was going back and forth to another doctor with blinding, numbing headaches. After around 3 times of this, he diagnosed me with primary hypothyroid, but seemed to know nothing about Hashimoto's, other than telling me that the primary cause of hypo was usually Hashi's. He never! did antibody tests at all, gave me $ynthroid, and told me that that would do it. When I questioned him more closely, he got angry and told me that my problems were not the thyroid, that that was "over with". (A stupid one, I found out much later). After almost 10 yrs on $ynthroid, then Levoxyl, I recently (starting in about mid Sept.) changed my medication to Armour w/Eltroxin. I started out at a tiny 15 mg dose w/50 mcgs of the Eltroxin, then suddenly had to drop the Eltroxin, due to allergy to a filler in it, so I then increased the Armour to 30 mgs, then, several wks later to 60 mgs. I've had trouble for yrs with too rapid a change in meds anyway, including large doses of vitamins, supplements, etc..am very sensitive that way. I tried to increase the Armour several wks ago to 90 mgs, but started having strange symptoms (like hyper), so I decreased it again to 60 mgs, and that's where I've stayed the last several wks. Early into the c! hange, I had my Free tests and TSH done (Sept 30th). TSH was 38 something, Free T4 was a .6 (below the .8 to something range), and Free T3 just inside the low normal range. Back in February, before I made this change, I had gone to an endo who doesn't believe in the Free testing or anything else that we know about the thyroid. Anyway, he upped my Levoxyl dosage from 100 mcgs of Levoxyl to 125 mcgs, after I had a TSH of 9.31, never knowing where I stood on my FREE hormone values (at any time since I've had thyroid disease). Anyway, the changes I've made, I had to do on my own because the doctors here in my community and surrounding communities just think that all of this is a lot of bunk, and they are all behind the times when it comes to this disease. All the testing that I have had done, I've done on my own orders, and the Armour I ordered myself from overseas. All this without doctor's orders, or any guidance from any doctor. I feel better! in some ways, at times, but the rest of the time I feel extremely tired. I'm thinking that I need to order more T4 to go with my Armour again, it's just going to have to have different fillers in it. I never felt good ever on T4-only treatment, plus, I feel that the pig thyroid has all the things in it that our own naturally healthy thyroids used to have in them. This is why I made the change. For the last 8-10 months, my thyroid has been swelling slightly, then goes back down just as suddenly as it swelled. I know about the goitrogenic vegetables, about the dangers of soy, estrogen blocking, and this sort of thing. I do take selenium, B vitamins, separate my calcium from my thyroid med. I do not take iron because I have very healthy red blood cells and great blood counts, as far as that goes. I tested negative on an ANA, which I had done myself. I still have not tested for the thyroid antibodies, but, because it seems that my t! hyroid AND the way I feel bounces around so much, I'm thinking that it's got to be Hashimoto's. Because this site is specialized to Hashi's, I'm listening.

[Guest guest]

Hi, -- a warm welcome to you! It certainly sounds to me like you

have *classic* Hashi's symptoms... especially the wild thyroid swings.

Where do you live? I know we have to do some digging around sometimes,

but you should be able to find an endo. who will test your antibodies.

When I was first diagnosed, my TSH was 52 and T4 was very slightly

below normal range (it was .72 -- normal was >.75). One doc wasn't

even convinced I was hypo. But I was having such a bad time of it,

, I was back in the E.R. 2 days later, and guess what -- my TSH

was 71! So I know about these swings. I do think it sometimes takes a

while on the right dosage of the thyroid supplement that works for you

before things even out.

By the way, what is Eltroxin? Haven't heard of that one.

Take care, -- you'll find a lot of support here.

> No, the 9.31 TSH was back in February of this year, when I went to

see this dumb endo. He upped the Levoxyl (for the first time since I

ever took my first dose of any thyroied med) from 100 mcgs to 125. I

never felt any better than I ever did though. I joined a thyroid

support group for several months before I gathered much more info than

what I had previously known, to make the change on my own. I found

out where to go to get the labs on my own by this group and ordered my

own medication. I do have an understanding of all these things, and I

work a medical floor. Anyway, I made this change about mid September,

then had testing done for Free T3 and Free T4 for the first time ever.

My TSH at this time was 38. something (way too high!). It's puzzling

that the Free T3 was withing the normal range, yet the Free T4 was way

below the normal range. I still don't feel that much better, though I

do believe in the natural hormone. I'm thinking that I should be

working on getting more T4 to go with it, if my next testing is still

going to show that low T4. It's funny that the TSH could be that

high, yet the T3 is withing that normal range. Does anyone have any

input on this?? Two months hasn't even past since this particular

testing. Could it be that it just hasn't been given enough time to

retest?

>

>

>

> Re: New to the Group

>

>

[Guest guest]

Hi, Welcome, I am a few days new myself. I

am also in Chicago area…Schaumburg…same age to,lol.

I am mainly here for my oldest daughter, she is 7 and recently diagnosed. She has had her

synthroid for 3 days now but we didn’t start it yet…trying to

figure out the best schedule…. and we slept in today so eating caused a

problem with starting it. She is starting on .125MG which I guess is a somewhat

high dose for adults but not for a child…still learning. I am having

trouble finding other parents with children going thru the same.

I am also familiar with Hashimoto’s

as my mother and grandmother also have it. Somehow I have been spared via the

labs (I swear I have symptoms) and I believe it passed onto my DD.

Welcome,

Thanks...Sharla

We child-proofed our

home 3 years ago and they're still getting in!

New to the

group

Hi All,

Glad to have found your group. I've been

diagnosed with Hashimoto's

today. I knew quite a bit about it since my

Gram had it. She also

had Primary Biliary Cirrhosis. She crossed

the river Sept. 11,

2003. I decided a few weeks ago to have some

bloodwork done to make

sure I didn't have PBC as well and ended up

finding that I have

Hashi's.

I am 28, have two kids, a 5 year old daughter and

a 5 month old

son. I noticed from reading the recent

messages there is a lady

here who is newly pregnant. Since I didn't

know I was sick while I

was pregnant, I can't give you any advice as to

how to handle it but

I can certainly commiserate when it comes to

feeling yucky as a

pregnant lady! I HATED being pregnant :-)

My TSH level is quite high right now...69.

The endo I saw today

felt that I had probably been developing this for

a number of years

which could explain why I feel very little in the

way of symptoms.

Sure, I get tired, constipated,

thickheaded....always managed to

find some other reason to explain those things

away.

I've begun taking Synthroid today and would be

interested in knowing

what dosages other people take. I would also

like to know if anyone

who was very overweight before they began

treatment has found it any

easier or harder to lose weight once they were on

a proper dose.

Anyway, I look forward to " meeting " you

all and learning your

stories!

Raiye in Chicago

*Note:

Information is freely exchanged on this board based on patient experiences, and

should not be considered a medical recommendation.

[Guest guest]

Hello Raiye... I am the newly pregnant one..

so you felt yuck thru your pregnancy also..

I am waiting for the glow that is supposed to happen..

Anyways, welcome.. I have had hashis since 2000, or that

is when it was diagnosed.. I probably have had it for

much longer than that. I am 36. This is my first pregnancy.

My meds have changed over the yrs and so have the dosages..

Weight loss... oh that is a funny one... and a very tough

one... well welcome again. Sincerely,

> Hi All,

>

> Glad to have found your group. I've been diagnosed with

Hashimoto's

> today. I knew quite a bit about it since my Gram had it. She also

> had Primary Biliary Cirrhosis. She crossed the river Sept. 11,

> 2003. I decided a few weeks ago to have some bloodwork done to

make

> sure I didn't have PBC as well and ended up finding that I have

> Hashi's.

>

> I am 28, have two kids, a 5 year old daughter and a 5 month old

> son. I noticed from reading the recent messages there is a lady

> here who is newly pregnant. Since I didn't know I was sick while I

> was pregnant, I can't give you any advice as to how to handle it

but

> I can certainly commiserate when it comes to feeling yucky as a

> pregnant lady! I HATED being pregnant :-)

>

> My TSH level is quite high right now...69. The endo I saw today

> felt that I had probably been developing this for a number of years

> which could explain why I feel very little in the way of symptoms.

> Sure, I get tired, constipated, thickheaded....always managed to

> find some other reason to explain those things away.

>

> I've begun taking Synthroid today and would be interested in

knowing

> what dosages other people take. I would also like to know if

anyone

> who was very overweight before they began treatment has found it

any

> easier or harder to lose weight once they were on a proper dose.

>

> Anyway, I look forward to " meeting " you all and learning your

> stories!

>

> Raiye in Chicago

[Guest guest]

,

I am guessing that I might have been hypo with both pregnancies since they were

both extremely hard on me. I can tell you that the first trimester was more

difficult than the second and third as far as fatigue goes. The third was hard

for me simply for feeling so large and uncomfortable. That seems to be pretty

standard so hopefully you will be feeling better soon.

Apparently the baby's cord blood was tested at birth for an array of stuff and I

have never been contacted so I am assuming all is well there. I don't think

they did cord blood testing when my daughter was born so I think I will have her

tested at her next physical just to be on the safe side.

Tell me why weight loss is a funny one? I don't have illusions that the weight

will just peel off but I am hoping that my efforts will be more easily rewarded.

Am I thinking pie in the sky or what?

Raiye

[Guest guest]

Hi Raiye,

Welcome to the group. TSH of 69 at diagnosis huh? wow! I was diagnosed with a TSH of just 7.16 in Jan 02 and was commenced on Levothyroxine 100mcg daily. Like you I was putting my symptoms down to all sorts of things, but I went to the doc when I sat down and added all my symptoms up and was worried about the numbness in my limbs and some chest pain. Through regular blood checks I know that my optimum TSH (where I feel 'well' at) is between 0.5 and 1. If I start getting towards 2 or over I feel hypothyroid.

As for the weight loss query you raised, well I was 6 stones (84lbs) overweight before starting my thyroxine. Now I am not saying all that extra weight was due to thyroid problems but I would say the majority of it was. Since becoming stable on my meds I have lost 46lbs (just over 3 stones) in about 8 months. I am however sticking to a healthy eating plan and hatha yoga. I think the thyroxine helped me lose and now I feel so much fitter and healthier.

Anyway good luck and hope you are feeling well soon.

Ali

Yorkshire, UKrpuffenbarger@... wrote:

Hi All,Glad to have found your group. I've been diagnosed with Hashimoto's today. I knew quite a bit about it since my Gram had it. She also had Primary Biliary Cirrhosis. She crossed the river Sept. 11, 2003. I decided a few weeks ago to have some bloodwork done to make sure I didn't have PBC as well and ended up finding that I have Hashi's.I am 28, have two kids, a 5 year old daughter and a 5 month old son. I noticed from reading the recent messages there is a lady here who is newly pregnant. Since I didn't know I was sick while I was pregnant, I can't give you any advice as to how to handle it but I can certainly commiserate when it comes to feeling yucky as a pregnant lady! I HATED being pregnant :-)My TSH level is quite high right now...69. The endo I saw

today felt that I had probably been developing this for a number of years which could explain why I feel very little in the way of symptoms. Sure, I get tired, constipated, thickheaded....always managed to find some other reason to explain those things away.I've begun taking Synthroid today and would be interested in knowing what dosages other people take. I would also like to know if anyone who was very overweight before they began treatment has found it any easier or harder to lose weight once they were on a proper dose.Anyway, I look forward to "meeting" you all and learning your stories!Raiye in Chicago*Note: Information is freely exchanged on this board based on patient experiences, and should not be considered a medical recommendation.

BT Yahoo! Broadband - Free modem offer, sign up online today and save £80

[Guest guest]

I have to agree with M, ! I went to my GP who immediately thought it was EN. He had the girl call the dermatologist to request an immediate appt, sent over the referral and the derm doc did the biopsy right then and there as well. He was fairly certain it was EN, but wanted verification. He did my biopsy right in the center of the very worst looking lump. Then unfortunately started the continuous blood tests to try and find a cause and so far - nothing!!!

I am not taking steroids though as I have a very high sugar level and my doctor is afraid of what it will do to that level - I am pre-diabetic. I am only taking Naproxen 500 mg 2 times a day for the inflammation. My lumps are no longer visible unless I take a bath or occasionally in the middle of the night they will surface, but don't stay there. However I still have the heat coming off my legs and the pain I had when they were visible. Not only am I "idiopathic", I don't do things like everyone else LOL!

Terrimwb42864 wrote:

Welcome, !Unfortunately, a biopsy is the best way to go, I think. Not only will it verify the EN, but it will also rule out the scary C thing. You don't want to find anything in that biopsy, other than EN! Sulfa antibiotics can cause EN, as does the birth control pill and other diseases, like Sarcs and Crohns . . . too many things cause it . . . and then again, most of us are left with NO REASON for it: "idiopathic." That's the most frustrating thing about EN . . . that and the side-effects of the drugs we have to take to get rid of the lumps . . . Anyway . . . do the biopsy, it's only a half-inch long scar, doesn't hurt, and the doc will do it in the least conspicuous place. Not a big deal at all! My doc did it during my FIRST visit with him, no waiting around for this guy! =) Good luck!M

[Guest guest]

Oh my word!!!! That is what I was told as a child - that I was getting spider bites and that I just reacted to them differently than everyone else in my family. I am 47 now. If that is the case then I might have been struggling with EN ever since I was in my early teens instead of just these last 18 months and for that matter it could have been caused by or related to my constant strep throat incidents. All these years I have thought I was getting bitten by spiders and my ex-hubby wasn't. Maybe it wasn't spider bites...not that that makes this any better LOL!

Terri son wrote:

Greetings to all in the EN group,

I am new to this site. For I finally got a clue of what I may have. For 6 years now I thought that I was getting spider bites! Every year in the Spring and Summer, I would get a couple of these red lumps, that were painful to the touch, and would turn into a bruise and finally go away after 3 months! ( some of the research I have done said the lumps should go away in 3 to 8 weeks, Hah! ) I recently went to the doc with these, because I got more lumps this year that ever. He said he believes I have EN, he wants to do a biopsy to be sure. I am wondering has anyone out there ever been diagnosed with a blood test only????? let me know. Cause I dont want a biopsy, I scar so darn easy!

I believe the reason I get these is because I get yeast infections, and yeast is a fungus, you know. Have you ever heard of outbreaks of EN with the following drugs:

Percacet

Carbomol

Antibiotics

Vicodin

I am open for any experiance, and similar testimonies. Of remedies. ( the doctor will probibly give me something huh? my biopsy is scheduled for next week, but like I said, I would rather be diagnosed with a blood test if possible)

Oh, I have never had Strep, or been exposed to TB or any other of the listed possible reasons for EN, other than Candida, yeast.

What do you think???

Thank you!

God Bless you all!

[Guest guest]

Welcome Jackie. Hope your tests results come out fine.

Cheryl Burton ncicheryl@...

New to the group

Hi - I'm Jackie. I'm in the process of being diagnosed with Asthma (I think - will know more Tuesday). I'm very nervous about my appt with the specialist. I had Bronchitis 6x since January. I am now on combivent 4x a day. I had the Pulmonary function test done but haven't received the results yet from my pcp - I'm guessing I will get them at my appt with the specialist. I find that my chest on the right side gets tight multiple times a day. Just wanted to say Hi. -- Jackie