Re: newly discovered thyroiditis

[Guest guest]

Hi Lois - welcome to the group.

Sounds like you've had a very rough and frustrating time of it. Just curious -

are you being treated for your adrenal insufficiency? If you do have that many

people say it's best if that's corrected first.

Have you tried cutting out gluten? My heart palpitations didn't resolve

completely until I gave it up. Though they were MUCH worse when I was severely

hypothyroid. I also take Coenzyme Q10 for the heart, though cutting out gluten

has helped so much I may wean off at some point.

As far as Hashis being diagnosed on fine need aspiration - I thought with Hashis

the thyroid gland was just irregular-shaped and prone to nodules, as you have.

The abnormal TPO confirms your Hashis. Are you on any treatment now at all? I

agree it's time to try different meds, though I would try cutting gluten too.

>

> hi susan, i'm replying to the group. i think that's what i read in the rules.

the following is a history of my thyroiditis. although i've had symptoms for

a lifetime, my T3, T4, and TSH always came up normal so the docs i visited

just ignored my symptoms. about 5 yrs ago i saw an endo for adrenal

insufficiency brought on by kenalog injections for epidurals and nucleoplasty.

at that time i again brought up my history of hypothyroid symptoms. he poo

pooed me so i asked if there were any other tests available. that's when he

ordered the TPO which was positive. he didn't explain what it meant nor did

he seem concerned, so i assumed it was nothing to worry about. now 5 yrs

later my tsh is a little elevated to 5. something. my p.c ordered

levothyroxin 50 mcg, and after 3 mos my heart began flopping around in my

chest, so i saw a cardiologist and a different endo who didn't examine me

physically and asked me to come back in 3 mos for more testing. my heart

tests were all negative, and he tried 12.5 mcg of synthroid. in the interim i

visited a neurosurgeon for an unrelated problem, who ordered a ct scan. it

showed enlargement of my left thyroid and nodules. on my next visit to the

endo i told him about it and he ordered an ultrasound that showed the

enlargement, and 3 nodules which were negative for malignancy on needle biopsy.

when the endo's doc called me back, about the negative for malignancy, i

asked if hashimoto's had been reported. she assured me that it would not show

up on biopsy. after asking how to diagnose hashimotos she went to ask the endo.

after speaking with him, she said the doc said that you do have hashimoto's. i

found out from google that it would show up on needle biopsy, and that the

earlier some treatment is begun, the more likely the chances of preventing the

gland from growing. it's so upsetting not to have been informed of it when i

was first tested at my request, 5 yrs ago if it weren't for the ct scan, i

still would not know. he stopped the synthroid after i began having palpitations

and insomnia, but would not try me on dessicated throid saying it was dangerous.

i also read on google to start selenium 200 mcgs which i have done. i have

joined this group to hopefully learn what others are doing and to perhaps learn

of an endo here in my area who specializes in thyroid diseases. most endos in

my area are extremely busy with diabetic patients and don't seem to be tuned in

to thyroid desease. thanks so much for listening. lois

>

[Guest guest]

thanks susan, when i click on " reply to group " and i type my message and send

it, it comes back to me saying " unable to send your message. this time i

clicked on " post to group and i think it's working "

i was treated for the adrenal insufficiency when it happened about 5 years ago.

it took about 6 mos of taking hydrocortisone for it to get back to normal.

i read on google that the pathologist can see abnormal cells from the needle

biopsy that are indicative of hashimotos. i think it said lymphocytes and

macrophages but i have fried brains now. i also read that in addition to this

auto immune disease attacking the thyroid, it also attacks the brain and other

organs. now i know why i have all these memory issues, cognitive impairment,

etc. i also have degenerative disc disease (DDD) and i'm sure now that it's

from this disease too. it's just nice to know.

although i never had palpitations before taking levothyroxin and synthroid, i

have eliminated gluten completely beginning yesterday when i read it on google.

i printed out a list of food that contain gluten, but i need to study it more

and try to remember them.

i also began taking selenium 200mcg recommended in the same article. it also

said that the dessicated thyroid is recommended and my doc won't order it. i

see that someone else here in the group suggested i ask my pharmacy what doc

orders it. i love that idea. i will try that on monday. thank you joan!

i do take co q 10 but not every day. i will do that now too.

do you take selenium too?

i am feeling so much better already having heard from you and joan. thank you

again. i would love to hear about the symptoms some of you are suffering from

as well, if anyone would like to share their history. lois

> >

> > hi susan, i'm replying to the group. i think that's what i read in the

rules. the following is a history of my thyroiditis. although i've had

symptoms for a lifetime, my T3, T4, and TSH always came up normal so the docs

i visited just ignored my symptoms. about 5 yrs ago i saw an endo for

adrenal insufficiency brought on by kenalog injections for epidurals and

nucleoplasty. at that time i again brought up my history of hypothyroid

symptoms. he poo pooed me so i asked if there were any other tests available.

that's when he ordered the TPO which was positive. he didn't explain what it

meant nor did he seem concerned, so i assumed it was nothing to worry about.

now 5 yrs later my tsh is a little elevated to 5. something. my p.c ordered

levothyroxin 50 mcg, and after 3 mos my heart began flopping around in my

chest, so i saw a cardiologist and a different endo who didn't examine me

physically and asked me to come back in 3 mos for more testing. my heart

tests were all negative, and he tried 12.5 mcg of synthroid. in the interim i

visited a neurosurgeon for an unrelated problem, who ordered a ct scan. it

showed enlargement of my left thyroid and nodules. on my next visit to the

endo i told him about it and he ordered an ultrasound that showed the

enlargement, and 3 nodules which were negative for malignancy on needle biopsy.

when the endo's doc called me back, about the negative for malignancy, i

asked if hashimoto's had been reported. she assured me that it would not show

up on biopsy. after asking how to diagnose hashimotos she went to ask the endo.

after speaking with him, she said the doc said that you do have hashimoto's. i

found out from google that it would show up on needle biopsy, and that the

earlier some treatment is begun, the more likely the chances of preventing the

gland from growing. it's so upsetting not to have been informed of it when i

was first tested at my request, 5 yrs ago if it weren't for the ct scan, i

still would not know. he stopped the synthroid after i began having palpitations

and insomnia, but would not try me on dessicated throid saying it was dangerous.

i also read on google to start selenium 200 mcgs which i have done. i have

joined this group to hopefully learn what others are doing and to perhaps learn

of an endo here in my area who specializes in thyroid diseases. most endos in

my area are extremely busy with diabetic patients and don't seem to be tuned in

to thyroid desease. thanks so much for listening. lois

> >

>

[Guest guest]

Hi Lois - not sure why you were having the e-mail issues. I almost never post by

e-mail, I just come to the site, but make sure you're sending the message from

your subscribed address, and to Thyroiditis .

I'm not so sure on the autoimmune disease attacking other organs - it might be

true, but traditionally not enough thyroid hormone is the culprit. When you have

low thyroid it can indeed affect the brain significantly and just about every

major organ you can name (though usually not all at once!) - each of us have

such a different experience with the disease. Some people don't get noticeable

symptoms at all, others suffer greatly.

If you look in our Files section, you'll see a member posted a pdf of

gluten-free resources. It really helped educate me as to all the things that

gluten is in. There are also helpful resources in the Links section.

I don't take Selenium, but a lot of thyroid patients do, and especially if you

feel you're not being adequately treated at the moment, it's a good idea.

My story is a little long... diagnosed 9 years ago and I generally do OK, though

I'm not sure I'll ever get my pre-Hashis energy back - but that could be due to

age too. Currently I am fighting recurrrent infections (vaginal). This has been

the one issue I can't seem to completely resolve, and it started exactly when I

was diagnosed with Hashis. They often affect me systemically - headaches,

lethargy comes and goes. Doctor sent me a letter Friday saying I have a small

amount of blood in my urine too, so I have to go back to repeat the urinalysis.

> > >

> > > hi susan, i'm replying to the group. i think that's what i read in the

rules. the following is a history of my thyroiditis. although i've had

symptoms for a lifetime, my T3, T4, and TSH always came up normal so the docs

i visited just ignored my symptoms. about 5 yrs ago i saw an endo for

adrenal insufficiency brought on by kenalog injections for epidurals and

nucleoplasty. at that time i again brought up my history of hypothyroid

symptoms. he poo pooed me so i asked if there were any other tests available.

that's when he ordered the TPO which was positive. he didn't explain what it

meant nor did he seem concerned, so i assumed it was nothing to worry about.

now 5 yrs later my tsh is a little elevated to 5. something. my p.c ordered

levothyroxin 50 mcg, and after 3 mos my heart began flopping around in my

chest, so i saw a cardiologist and a different endo who didn't examine me

physically and asked me to come back in 3 mos for more testing. my heart

tests were all negative, and he tried 12.5 mcg of synthroid. in the interim i

visited a neurosurgeon for an unrelated problem, who ordered a ct scan. it

showed enlargement of my left thyroid and nodules. on my next visit to the

endo i told him about it and he ordered an ultrasound that showed the

enlargement, and 3 nodules which were negative for malignancy on needle biopsy.

when the endo's doc called me back, about the negative for malignancy, i

asked if hashimoto's had been reported. she assured me that it would not show

up on biopsy. after asking how to diagnose hashimotos she went to ask the endo.

after speaking with him, she said the doc said that you do have hashimoto's. i

found out from google that it would show up on needle biopsy, and that the

earlier some treatment is begun, the more likely the chances of preventing the

gland from growing. it's so upsetting not to have been informed of it when i

was first tested at my request, 5 yrs ago if it weren't for the ct scan, i

still would not know. he stopped the synthroid after i began having palpitations

and insomnia, but would not try me on dessicated throid saying it was dangerous.

i also read on google to start selenium 200 mcgs which i have done. i have

joined this group to hopefully learn what others are doing and to perhaps learn

of an endo here in my area who specializes in thyroid diseases. most endos in

my area are extremely busy with diabetic patients and don't seem to be tuned in

to thyroid desease. thanks so much for listening. lois

> > >

> >

>

[Guest guest]

If you are saying "reply to all" that could be the issue, just try hitting reply.SonyaSent from my iPhone

thanks susan, when i click on "reply to group" and i type my message and send it, it comes back to me saying "unable to send your message. this time i clicked on "post to group and i think it's working"

i was treated for the adrenal insufficiency when it happened about 5 years ago. it took about 6 mos of taking hydrocortisone for it to get back to normal.

i read on google that the pathologist can see abnormal cells from the needle biopsy that are indicative of hashimotos. i think it said lymphocytes and macrophages but i have fried brains now. i also read that in addition to this auto immune disease attacking the thyroid, it also attacks the brain and other organs. now i know why i have all these memory issues, cognitive impairment, etc. i also have degenerative disc disease (DDD) and i'm sure now that it's from this disease too. it's just nice to know.

although i never had palpitations before taking levothyroxin and synthroid, i have eliminated gluten completely beginning yesterday when i read it on google. i printed out a list of food that contain gluten, but i need to study it more and try to remember them.

i also began taking selenium 200mcg recommended in the same article. it also said that the dessicated thyroid is recommended and my doc won't order it. i see that someone else here in the group suggested i ask my pharmacy what doc orders it. i love that idea. i will try that on monday. thank you joan!

i do take co q 10 but not every day. i will do that now too.

do you take selenium too?

i am feeling so much better already having heard from you and joan. thank you again. i would love to hear about the symptoms some of you are suffering from as well, if anyone would like to share their history. lois

> >

> > hi susan, i'm replying to the group. i think that's what i read in the rules. the following is a history of my thyroiditis. although i've had symptoms for a lifetime, my T3, T4, and TSH always came up normal so the docs i visited just ignored my symptoms. about 5 yrs ago i saw an endo for adrenal insufficiency brought on by kenalog injections for epidurals and nucleoplasty. at that time i again brought up my history of hypothyroid symptoms. he poo pooed me so i asked if there were any other tests available. that's when he ordered the TPO which was positive. he didn't explain what it meant nor did he seem concerned, so i assumed it was nothing to worry about. now 5 yrs later my tsh is a little elevated to 5. something. my p.c ordered levothyroxin 50 mcg, and after 3 mos my heart began flopping around in my chest, so i saw a cardiologist and a different endo who didn't examine me physically and asked me to come back in 3 mos for more testing.

my heart tests were all negative, and he tried 12.5 mcg of synthroid. in the interim i visited a neurosurgeon for an unrelated problem, who ordered a ct scan. it showed enlargement of my left thyroid and nodules. on my next visit to the endo i told him about it and he ordered an ultrasound that showed the enlargement, and 3 nodules which were negative for malignancy on needle biopsy. when the endo's doc called me back, about the negative for malignancy, i asked if hashimoto's had been reported. she assured me that it would not show up on biopsy. after asking how to diagnose hashimotos she went to ask the endo. after speaking with him, she said the doc said that you do have hashimoto's. i found out from google that it would show up on needle biopsy, and that the earlier some treatment is begun, the more likely the chances of preventing the gland from growing. it's so upsetting not to have been informed of it when i was first tested at my request, 5 yrs ago

if it weren't for the ct scan, i still would not know. he stopped the synthroid after i began having palpitations and insomnia, but would not try me on dessicated throid saying it was dangerous. i also read on google to start selenium 200 mcgs which i have done. i have joined this group to hopefully learn what others are doing and to perhaps learn of an endo here in my area who specializes in thyroid diseases. most endos in my area are extremely busy with diabetic patients and don't seem to be tuned in to thyroid desease. thanks so much for listening. lois

> >

>

[Guest guest]

Hello

Lois,

I’m

sorry it took me so long to repily but it’s been crazy here.

You

are not alone I too did not know I had Hashimoto’s until 5 years later. I saw

one endo who tested me for it but never told me 5 years later, my pc told me

that my TSH was high so I saw another endo doctor who told me I has Hasimoto’s

but never told me I was previously tested for it. So I asked he told me that he

wanted to get an ultrasound and blood work so I asked him again about the

diagnosis and he told be that I did not need to be tested again. I had to find

out from internet research what the test was called and then I looked it up in

my medical records and there it was 5

years earlier. I was livid that not just one doctor didn’t tell me but the

second one only gave me half the information I needed.

While

I was between doctors I stopped taking the synthetic T4 ( levoxyl ) and went to

a natural source http://www.nutri-meds.com/Nutri_Meds_Desiccated_Porcine_Thyroid_Capsules_p/nm-g-ptc.htm

So

when I did see a new endo I found out that my TSH was high and my T3 was also

high so I was getting too much T3 from the natural hormone I was taking the

natural hormone contains all the hormones that the thyroid makes

T4,T3,T1 & T2 and I only needed T4 so I went back to the T4 so I kind of

threw it out of farther whack by taking the natural hormone. So I went from .50

to .75 lately I’ve been feeling very off and I’m going to request blood work

sooner than later because I think that my TSH is too low but I won’t know that

fore sure until the blood work is done.

I

hope I was helpful to you, I know how hard it can be when doctors aren’t up

front with you and don’t tell you everything you need to know.

Edith

To: Thyroiditis Sent: Thursday, January 5, 2012 7:09 PM Subject: newly discovered thyroiditis

hi susan, i'm replying to the group. i think that's what i read in the rules. the following is a history of my thyroiditis. although i've had symptoms for a lifetime, my T3, T4, and TSH always came up normal so the docs i visited just ignored my symptoms. about 5 yrs ago i saw an endo for adrenal insufficiency brought on by kenalog injections for epidurals and nucleoplasty. at that time i again brought up my history of hypothyroid symptoms. he poo pooed me so i asked if there were any other tests available. that's when he ordered the TPO which was positive. he didn't explain what it meant nor did he seem concerned, so i assumed it was nothing to worry about. now 5 yrs later my tsh is a little elevated to 5.

something. my p.c ordered levothyroxin 50 mcg, and after 3 mos my heart began flopping around in my chest, so i saw a cardiologist and a different endo who didn't examine me physically and asked me to come back in 3 mos for more testing. my heart tests were all negative, and he tried 12.5 mcg of synthroid. in the interim i visited a neurosurgeon for an unrelated problem, who ordered a ct scan. it showed enlargement of my left thyroid and nodules. on my next visit to the endo i told him about it and he ordered an ultrasound that showed the enlargement, and 3 nodules which were negative for malignancy on needle biopsy. when the endo's doc called me back, about the negative for malignancy, i asked if hashimoto's had been reported. she assured me that

it would not show up on biopsy. after asking how to diagnose hashimotos she went to ask the endo. after speaking with him, she said the doc said that you do have hashimoto's. i found out from google that it would show up on needle biopsy, and that the earlier some treatment is begun, the more likely the chances of preventing the gland from growing. it's so upsetting not to have been informed of it when i was first tested at my request, 5 yrs ago if it weren't for the ct scan, i still would not know. he stopped the synthroid after i began having palpitations and insomnia, but would not try me on dessicated throid saying it was dangerous. i also read on google to start selenium 200 mcgs which i have done. i have joined this group to

hopefully learn what others are doing and to perhaps learn of an endo here in my area who specializes in thyroid diseases. most endos in my area are extremely busy with diabetic patients and don't seem to be tuned in to thyroid desease. thanks so much for listening. lois