new to the group

[Guest guest]

Welcome !

I'm glad to hear your back pain is finally starting to lighten up. <g> My

name is Raven, and I've had a migraine all-day-every-day for 12.5 years. I hope

you find the same level of camaraderie, comfort, and helpful advice that I've

found here. This is a wonderful group of people who will share in both your

pain and your relief. <g>

Raven

[Guest guest]

Hi everyone,

I am new to this group, but not newly diagnosed. I was diagnosed at 16 with

hypothyroid disease (I'm 31 now). Around age 23 my doctor found 5 nodules on my

thyroid (all were non-cancerous). That was when I was diagnosed with

Hashimoto's. My levels have always gone up, up, and up. They never stay

stable. But I had always felt fine aside from the fatigue and they typical cold

hands and feet stuff. Then this past Sept. I started to have fainting spells,

tremors, headaches, dizzy spells, problems with my memory and speech. In short

a ton of problems. I went through tons of tests, all of which had been fine

with one exception: my TSH levels were out of range. They kept changing

radically too. This past time my primary ordered a follow up test and they were

finally within range for a change, and the t4 was also fine...but, the

anti-thyroid peroxidase test came back at like 716. From my understanding that

is way out of range. I have seen 2 endocrinologists since Sept. and both have

told me my levels are nothing to worry about. Even when my tsh levels were at

9.8 and 10.35 I was told not to worry about my levels. When I had a new

ultrasound done to check those old nodules out, I still have 3 of the 5 and I

was told not to worry. The only doctors who seem concerned about my levels have

been my primary and my neurologist who believes that I could possibly have what

is called Hashimoto's encepholopathy. Has anyone out there ever gone through

anything like this with their thyroid? I am at a loss as to what to do. My

primary says if it is my Hashi's there is really nothing to do other than manage

it with the meds, which don't seem to be working (I take them every evening,

which is what I was advised to do by doctors because I also have a slow

stomach)and I have been on the same meds (not same dosage) since I was 16. My

mom also has a thyroid problem and had part of hers removed several years ago

and she has since stabalized, so she thinks that is a possible solution. I am

at a loss as to what to do. Any feedback would be welcome and if not thanks for

at least listening.

~Lyn

[Guest guest]

Hi Lyn,I was reading what you have to say. It is strange i had my both thryoid lobes removed over the past year because i had thyroid cancer. I have no been experiencing something like you which is i get really dizzy like i am going to pass out never have, and get all sweaty and hot, treamors and headaches and lower back pains so now i am wondering if it has something to do with my thyroid levels as well now that i read yours. I just had blood work done waiting for results from my GP because it does not seem like my endo is keeping up with me. I do not see him again till Sept so now i am worried. I just recently found a lump on the side of my neck so i am hoping it has not gone to my lymph nodes or anything i go see my doctor on monday. Well i was also told i had Hasmitos but now that thyroid is removed

it no longer is their. I wonder how long i have had a thyroid issue for i bet years and years. They only ever did blood work always came back normal of course. THan had ultrasound. So keep an eye on the nodules anyways and good luck with everything.LoriTo: Thyroiditis Sent: Fri, March 4, 2011 10:40:56 PMSubject: new to the group

Hi everyone,

I am new to this group, but not newly diagnosed. I was diagnosed at 16 with hypothyroid disease (I'm 31 now). Around age 23 my doctor found 5 nodules on my thyroid (all were non-cancerous). That was when I was diagnosed with Hashimoto's. My levels have always gone up, up, and up. They never stay stable. But I had always felt fine aside from the fatigue and they typical cold hands and feet stuff. Then this past Sept. I started to have fainting spells, tremors, headaches, dizzy spells, problems with my memory and speech. In short a ton of problems. I went through tons of tests, all of which had been fine with one exception: my TSH levels were out of range. They kept changing radically too. This past time my primary ordered a follow up test and they were finally within range for a change, and the t4 was also fine...but, the anti-thyroid peroxidase test came back at like 716. From my understanding that is way out of range. I have seen 2

endocrinologists since Sept. and both have told me my levels are nothing to worry about. Even when my tsh levels were at 9.8 and 10.35 I was told not to worry about my levels. When I had a new ultrasound done to check those old nodules out, I still have 3 of the 5 and I was told not to worry. The only doctors who seem concerned about my levels have been my primary and my neurologist who believes that I could possibly have what is called Hashimoto's encepholopathy. Has anyone out there ever gone through anything like this with their thyroid? I am at a loss as to what to do. My primary says if it is my Hashi's there is really nothing to do other than manage it with the meds, which don't seem to be working (I take them every evening, which is what I was advised to do by doctors because I also have a slow stomach)and I have been on the same meds (not same dosage) since I was 16. My mom also has a thyroid problem and had part of hers removed several

years ago and she has since stabalized, so she thinks that is a possible solution. I am at a loss as to what to do. Any feedback would be welcome and if not thanks for at least listening.

~Lyn

[Guest guest]

Are you Endo's DRUNK? I'd get a new one!

Light

Make Sure You Enjoy TODAY!

Subject: new to the groupTo: Thyroiditis Date: Friday, March 4, 2011, 7:40 PM

Hi everyone,I am new to this group, but not newly diagnosed. I was diagnosed at 16 with hypothyroid disease (I'm 31 now). Around age 23 my doctor found 5 nodules on my thyroid (all were non-cancerous). That was when I was diagnosed with Hashimoto's. My levels have always gone up, up, and up. They never stay stable. But I had always felt fine aside from the fatigue and they typical cold hands and feet stuff. Then this past Sept. I started to have fainting spells, tremors, headaches, dizzy spells, problems with my memory and speech. In short a ton of problems. I went through tons of tests, all of which had been fine with one exception: my TSH levels were out of range. They kept changing radically too. This past time my primary ordered a follow up test and they were finally within range for a change, and the t4 was also fine...but, the anti-thyroid peroxidase test came back at like 716. From my understanding that is way out of range. I have

seen 2 endocrinologists since Sept. and both have told me my levels are nothing to worry about. Even when my tsh levels were at 9.8 and 10.35 I was told not to worry about my levels. When I had a new ultrasound done to check those old nodules out, I still have 3 of the 5 and I was told not to worry. The only doctors who seem concerned about my levels have been my primary and my neurologist who believes that I could possibly have what is called Hashimoto's encepholopathy. Has anyone out there ever gone through anything like this with their thyroid? I am at a loss as to what to do. My primary says if it is my Hashi's there is really nothing to do other than manage it with the meds, which don't seem to be working (I take them every evening, which is what I was advised to do by doctors because I also have a slow stomach)and I have been on the same meds (not same dosage) since I was 16. My mom also has a thyroid problem and had part of hers removed several

years ago and she has since stabalized, so she thinks that is a possible solution. I am at a loss as to what to do. Any feedback would be welcome and if not thanks for at least listening.~Lyn

[Guest guest]

Hi Collen,

I also live in S. NJ. Who is your endo if you don't mind me asking? I am

currently on the hunt for a new end since the two I have seen since my whole

train wreck started seem to think my thyroid is " fine " and that my levels are

off because I'm not taking my pills correctly. It is such an insult when you do

take your pills like you should and when the tsh numbers come in at 9.8 and then

go to normal and then jump again to 10.35 and then back to normal....all the

while doing the same thing with the meds...clearly the thyroid is not " fine " So

if you like your doctor, I would love to know. It is hard finding a good endo

in this area, I have seen a few different endos of the years and finally found

an endo I loved and then she got sick and left the practice and since I have not

been able to find a good endo. Oh and for information on Hashi's you want to go

to http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm. There is a ton

of information on thyroid.about.com, but you may have to click around a lot to

find it. Shomon has wrote a ton of stuff on thyroid problems she is an

advocate. I found out about her and some of the stuff she explains when looking

into hashimoto's encepholopathy. I hope things improve for you soon. Good luck

~Lyn

>

> Hello all,

> My name is Colleen--I live in South Jersey. I was diagnosed with

> Hashi's about a year ago. I've been sick since 2002 and have gone

> through what most of us have with doctors throwing anti-depressants

> my way or simply saying " you're a working mom--of course you are

> tired " ...and all of that. I have a great doc now at the U of Penn

> (four doctors later). So, here are some of my concerns. First, I've

> gained a good amount of weight in the past three years (and I've had

> two pregnancies in that amount of time). So, weight is an issue.

> Since we finally knew about the Hashi's with my last pregnancy the

> doc monitored me really well and I actually felt great while pregnant

> and actually lost weight! After the baby was born things went

> downhill immediately. My arm started to get numb again, more weight

> gain, fatigue, plus I never stopped bleeding after having the baby

> which requied two weeks of straight progesteron, etc. I had

> bloodwork done at 6 weeks post-partum and it read that I was a bit

> hyper. I was shocked! So, doc had me skip one of my daily 1oo mcg

> Levoxyl pills in a week. I am now 6 months post partum and super

> fatigued, worse numbness, forgetfullness, fuzzy, sore throat, etc. I

> had my bloodwork done and my TSH is 9.921 (.350-5.50). I can't

> believe I went so far hypo so quickly. I also have Epstein-barr

> which no one has ever been able to tell me anything about--what role

> does it play? Can it be treated? etc. Always a mystery. Anyway,

> here are my EBV numbers: EBV Early Antigen 113 (0-99), EBV Ab VCA

> 792 (0-99), EBV Nuclear Antigen 647 (0-99). No clue what any of

> that means. Next...cholesterol. My overall cholesteral is now 212

> and my LDL is 141. I do not eat a lot of junk food at all. I eat

> balanced meals, fruits and veggies and take a multi-vitamin. I will

> work on my diet more and get more exercise but man, oh man, I am so

> frustrated!! I see my doc at Penn this Thursday. I'd love to hear

> your take on any of this.

>

> Also, I find it so hard to find information related to hashi's. Can

> anyone recommend a book or website?

>

> Colleen

>