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Hi ...

I think that the reason some doctors say that scoliosis does not cause

pain is that there are a lot of people with very severe curves, who

report that they have no pain. What they should probably tell

patients is that degeneration created by scoliosis often causes pain.

Regards,

> Did you have Surgery? I wish Docs had alittle more

> sympathy. If they do not have scoliosis they can not

> say it does not

> cause pain!!!

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Hi, !

I am a bit worried about your doc not being a scolio specialist,

because s/he will be in no position to suggest anything like surgery

or bracing. The most s/he can do is refer you, so you probably need

to make your mind up to insist on this. As for scoliosis not causing

pain, I was told that myth in my teens, about 25 years ago now, and,

true, my back gave me little trouble, despite an ever-increasing

curvature -until quite recently. I think when you're very young your

muscles may be able to adjust, but it will catch up with you in the

end. My mother (not a scoliotic) has one leg slightly longer than the

other and only began to get (quite severe) pain in her 40s. She now

sees a chiropractor regularly.

Good luck with your consultation - Dawn.

P.S. Love your handle - you must be a cat-lover, too!

In Scoliosis Treatment , " "

<2boots2slippers8paws@c...> wrote:

> ,

> My gp ordered on standing xray of my spine. My curvature and tilted

pelvis

> are quite vivid on it. Radiology also included a typed report

stating both

> things in with the film. I am taking this with me tomorrow. The

last xray I

> had done, which was actually an abdominal, I was lying down. That

is what my

> gp went from in initially diagnosing my scoli. I was glad when I

was told to

> stand up. Lying down, I am much more apt to " curve " into a

comfortable

> positinion. Standing up, I knew it would look much more accurate.

If I'm not

> satisfied with this doc, I'll have to go through my insurance

company not my

> gp. I'm also contemplating changeing my gp with them tomorrow

anyhow. I'm

> not happy with him for reasons having nothing to do with my back.

>

> Take Care,

>

>

>

> michelle

> " A cat pours his body on the floor like water. It is restful just

to see him

> "

> Lyon Phelps

>

>

>

>

>

> -- Re: scared

>

> Hi ,

>

> I can understand your fears, and hopefully this dr. will be

somewhat

> familiar with scoliosis. If not, can you go back to your GP and

get

> another referral to another orth dr.? I can't imagine a deadend

> could happen with just one dr.'s opinion.

> I have found it helpful to have a typed list of: history, symptoms

> and questions. Some dr.s appreciate this efficiency, and it helps

me

> maintain my cool.

> Can you make sure that if he orders a set of x-rays that they

> are " standing x-rays " ? My initial ortho dr. didn't even know

enough

> to do that. He just had me lie on a table for all the spine x-rays.

> And you are correct about weight - that may have an effect on

> increased pain, but it has no effect on the curve itself. I have

> always been overweight and my surgeon has never pointed the finger

at

> me about it. He does say " lighter and stronger " is optimal for my

> health and pain levels.

>

> Good Luck with being your own best advocate. I know it is not

always

> easy, especially when we run across an intimidating personality.

>

>

>

>

>

>

>

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With regard to pain with scoliosis, it definately causes pain. Even my

doctor will agree with that. There can be many causes. A major cause is that

our muscles are so twisted and taught and they fatigue a lot easier than

someone with a normal spine, and that in itself will cause pain and discomfort.

Sometimes failure of fusion will cause pain. I didn't have surgery on my

neck, yet my neck always aches. I have been told by my PT and doctor that the

muscles that hold up the head are weak due to surgeries, etc. There are times

that my ribs still hurt and it has been four years since my revision surgery.

Don't let anyone tell you that scoliosis does not cause pain. Your whole

body is out of alignment and always compensating for that. I don't like to

complain about it because thank God I am fairly functional but I don't sleep

well and always feel achy. To look at me no one would know because I try to

hide it so I think many people don't really understand what it is we go

through.

I find that once I sit down at night and then get up I feel like my body

seizes. Everything gets tight. I feel better when I am moving. Hope this

helps.

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Although I agree with R. about the pain vs scoliosis.... My

version goes " Scoliosis does not cause pain in those that treat

us.... "

I have had more than one doctor tell me that everyone he sees is in

pain so don't complain to him about it.... Yah I am a tad bitter

about it... I have been in pain since I was 10 years old and by the

time I was 12 years old I needed surgery. If someone told me my

scoliosis wasn't causing my pain back then I might have believed

them... hey I was a little kid and believed in a lot of stuff adults

told me... but I know better now. Anyway I think we can safely

assume that scoliosis does cause pain in some people despite the

generalisations that physicians make.

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Hi ...

You'd have to talk to your doctor, but I can't imagine how removal of

your Harrington rods alone would do anything for your shortness of

breath. It seems to me that removal of your rods, along with

additional revision surgery, might help.

Regards,

> That is a great answer. Thanks.

> What is your OPION on having harrington rods removed

> if you had the surgery like I did back in the

> 70's?Would it help with my Shortness of breath? I have

> alot of problems breathing and my heart racing when I

> exert myself.

> Thanks,

>

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Hi ...

I agree. It's a really stupid thing to tell patients. While

technically correct, it probably makes many patients feel like the

doctors don't believe they're actually in pain.

Regards,

> Although I agree with R. about the pain vs scoliosis.... My

> version goes " Scoliosis does not cause pain in those that treat

> us.... "

>

> I have had more than one doctor tell me that everyone he sees is in

> pain so don't complain to him about it.... Yah I am a tad bitter

> about it... I have been in pain since I was 10 years old and by the

> time I was 12 years old I needed surgery. If someone told me my

> scoliosis wasn't causing my pain back then I might have believed

> them... hey I was a little kid and believed in a lot of stuff adults

> told me... but I know better now. Anyway I think we can safely

> assume that scoliosis does cause pain in some people despite the

> generalisations that physicians make.

>

>

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i dont like many drs, they all make me feel fake, dont take

me seroise, i mean whos going threw it us or them, at this time and point us

and if they ever wents threw it well they should know right??the onlty dr i

like was the one who diliverd my kids and my mothers way back, i mean i seen

a specailist and there sooo crapy but if my mom could be there it be difrent

imean i was the one in this to have been asaulted 6 years ago now all kinds

of probloms

-- Re: scared

Hi ...

I agree. It's a really stupid thing to tell patients. While

technically correct, it probably makes many patients feel like the

doctors don't believe they're actually in pain.

Regards,

> Although I agree with R. about the pain vs scoliosis.... My

> version goes " Scoliosis does not cause pain in those that treat

> us.... "

>

> I have had more than one doctor tell me that everyone he sees is in

> pain so don't complain to him about it.... Yah I am a tad bitter

> about it... I have been in pain since I was 10 years old and by the

> time I was 12 years old I needed surgery. If someone told me my

> scoliosis wasn't causing my pain back then I might have believed

> them... hey I was a little kid and believed in a lot of stuff adults

> told me... but I know better now. Anyway I think we can safely

> assume that scoliosis does cause pain in some people despite the

> generalisations that physicians make.

>

>

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Hola

Sending my support and hoping you can take us all with you to see the surgeon.

Over the years of seeing surgeons myself I have found that we all have to be in

charge and not let them talk over you, make your point, if he tells you nothing

is wrong then you have to make him see that clearly there is a problem and you

cant be in pain like you are for the rest of your life.

Are you anywhere near water as I find this really helps me to keep my weight

down and I am pain free when swimming, it may give you some relief, even of you

cannot do lengths, do you think you would be able to do some standing exercises?

I am sorry you have daily pain, I know how you feel as I suffer with daily pain

and have for some years now, I too was seeing surgeons and what they were

telling me was not what I wanted to hear so I have been searching for someone

more caring and a surgeon that does not want to numb my lumbar area to take the

pain away.

Please keep us posted and try not to be scared, just speak your mind, I always

go to see my surgeon with a list of questions and work through them with him, I

have found I get more respect from the surgeons when I go loaded up with

information as this shows I am willing to help myself and for some reason this

has helped me when talking to them.

I am sure you will be fine, don't work yourself up until you have spoken to him

as you will only make yourself ill for no reason and the he may not be a monster

and say what you think he will, he is probably a very nice person and give you

all the answers you need and be able to help you.

Thinking of you

Best Wishes

Nutty

scared

I am very scared. I have an appointment with an orthopedist on Monday. I

shared that fact when I was new in this group. I got advice from many people

who told me I need to see a specialist for scoliosis. You must understand

that my husband is military and I don't get to choose who I see. I may in

fact get to ultimately go to a specialist, but I have to go through proper

channels and that is having an ortho see me first. What I am scared about is

that he is going to tell me there is nothing wrong or I don't need any help.

The last Dr. I went to did just that. My curvature is mild compared to some

I've seen online. However, it's mostly lumbar and my entire pelvis is

sitting at an angle. I have daily pain. It's waking me at night even with

sleeping pills. I'm also scared because I am overweight and I know the first

thing he will tell me is I am too fat, although in medical terms. I won't

say nicer because obese and too high bmi are not nicer words at all. What I

can't seem to get anyone to understand, is that I've had this pain since I

was a lithe teenager. It's neither worsened or decreased with my slow weight

gain over the past 20 years.

So yeah, I'm just scared and apprehensive right now and could use some

support. I am going to the Dr. alone because they won't let my husband off

work for such reasons.

Thanks for listening,

michelle

" A cat pours his body on the floor like water. It is restful just to see him

"

Lyon Phelps

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, I am also like , with the curve causing my

pelvic to tilt, and in alot of pain. Have you had any luck

finding someone to help? No Dr's I've been to know anything

to help me, they all tell me Scoliosis does'nt cause pain.I

am 43, 5'6 " 120. I work out all the time, to subdue the pain.

My muscle's are very strong, but they can't hold me straight

for very long. I really don't think if I was larger the pain

would change. And if you were smaller you'd still have pain

like me. Can anyone help us?

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Dear ,

I completely understand your fear. The best you can do is go totally

mentally prepared to this appointment. I'd write down every fact and take it

with

me. It's important to not appear whiny, but factual. Doctors can easily dismiss

us when we are crying or complaining even though we are justified in both

cases from pain.

I'd list exactly when this pain started, what it feels like, when it comes,

how long it lasts, where it is, and HOW MUCH Worse it has gotten. I'd emphasis

it started long before your weight gain and what you've tried to get rid of

it....meds, exercise, heat/ice/ etc. I'd list all the things you can't do now

that you used to do and how it has limited your functioning and quality of

life. After you've presented your facts, I'd tell him you need relief and seek

a

referral to an orthopedic doctor that specialises in adult scoliosis. If a

doctor tells you scoliosis doesn't cause pain then tell him something must be

very wrong then because yours is. (And he doesn't know much about scoilosis in

the lumbar spine, but you'd be wise not to tell him that)

In the meantime I'd read up on scoliosis books if you haven't already:

Scoliosis Ascending the Curve by Booke Lyons, The Scoliosis Handbook A

Consultation

with a Specialist by Neuwirth, M.D., and if surgery is ever

planned-Scoliosis Surgery The Definitive Patient's Reference by K.

Wolpert. All

can be purchased from online book stores and are worth their weight in gold.

(I'd even take one with me to my appointment for the doctor to see).

Good luck to you. Some doctors will dismiss you because they can't help you

and they know it, but some will be glad to refer you because they are wise

enough to realize they can't help but know someone else can. Let's pray you get

the second. And if you don't, just be persistant. Doctors need to realize you

will be back if their treatment doesn't work. They may hope you

disappear-that's the one thing you can never do.

We are here for you, . And we've all been where you are...hang on...

Jolene

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Hi ....

You have never stated to my knowledge where you are located, and/or which

Military Hospital you go to; however, I would suggest that you contact Spinal

Surgery within the Department of Orthopedics at the Walter ARMY Medical

Center in Washington, D.C. Dr. Polly (who I believe recently retired from

the Army) was the Chief of Spinal Surgery at Walter , and also a member of

the Scoliosis Research Society. SRS members are Orthopedic Surgeons who

sub-specialize in the treatment of scoliosis. Henceforth, someone at Walter

should be able to direct you to a scoliosis specialist within the army

based on Dr. Polly's contacts, and/or should be able to get in touch with Dr.

Polly for such information.

I hope this helps, and best wishes!! :-)

S.

Germantown/Rockville land

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Nutty, your letter to Micheelle was very touching..How long

have you been seeing Dr's, I too have been thru it all,

trying to find a Dr. who will understand, I am currantly

printing all these letter's to take to them, then see if they

tell me Scoliosis does'nt cause pain.There has to be someone

to help us... Sheila

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,

I am definitely with you! My pain began about 12 years of age and nobody

believed me, even in my family. 45 years later I had my first surgery " in

order to continue breathing " . As you know, again lately I'm being told to

basically " tough it out " . Well, it's my pain and I'm going to do it my way, so

there!

Sincerely,

Carole M.

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Hola Sheila

I have been seeing surgeons and gps for almost 16 years and generally come out

thinking " what an arse " LOL.

Thankyou for the email about my letter to , I do like to try and lift

peoples´ spirits but sometimes I am just stuck for words, pain is a strange

dilemma, very hard to explain to someone how it feels, is it an ache, a shooting

pain, when does it happen etc etc, the only people that truly understand the

pain are the ones that suffer and for a surgeon to suggest that Scoliosis

doesn't cause pain, well maybe he should give it a try and come back to us!

Take care Sheila and all the best, hope you are not suffering too much.

Nutty

Re: scared

Nutty, your letter to Micheelle was very touching..How long

have you been seeing Dr's, I too have been thru it all,

trying to find a Dr. who will understand, I am currantly

printing all these letter's to take to them, then see if they

tell me Scoliosis does'nt cause pain.There has to be someone

to help us... Sheila

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  • 9 months later...
Guest guest

,

Never burst my eardrum, but let me tell you, if a

cholesteatoma is in your ear it must come out if you

wish to sustain any amount of hearing in your ear. I

have done 3 canal wall up surgeries and one through

the ear canal surgery. I was back to work in 3 days

time after each procedure. I was nervous and am every

time I go for surgery, I just trust that God sent me

to a good surgeon and all will be ok.

--- Eckler <reckler@...> wrote:

> ,

>

> I too burst my ear drum (several times) before

> eventually developing a

> c-toma. I was fortunate enough not to encounter any

> vertigo.

>

> If your ENT has diagnosed you with c-toma's then he

> is correct based on

> everything I have read; they have to be removed.

> Not doing so can cause

> far greater problems. Your doctor is the best

> person to tell you what to

> expect long term as every case is a bit different,

> but I can share my

> experience with you.

>

> I have had 3 c-toma surgeries and was apprehensive

> before all of them. The

> first two attempts to resolve the issue with canal

> wall up (CWU) surgery

> ultimately failed. I just had my 3rd surgery about

> 6 weeks ago. This

> procedure was a bit different in that my surgeon

> performed a canal wall down

> (CWD) surgery. I am hopeful that my recent surgery

> will be my last to

> correct c-toma. The only long term issue most

> c-toma patients have is the

> need to keep the ear dry. That means exercising

> caution around water and

> water related sports.

>

> Recovery varied greatly with all my surgeries.

> After my 2nd surgery I was

> out of work for two weeks. One week of which I had

> some vertigo and was

> " bouncing of the walls " . My last surgery was the

> best yet. I only missed a

> week of work and had no vertigo at all. Either way

> plan on spending your

> first night in the hospital.

>

> I hope you feel better and good luck with your

> surgery. Be sure to talk

> with your surgeon so you understand the procedure

> he/she will be performing.

>

> Regards,

>

> Rich

> _____

>

> From: cholesteatoma

> [mailto:cholesteatoma ]

> On Behalf Of elizabeth_sobotta2001

> Sent: Saturday, June 18, 2005 1:18 AM

> cholesteatoma

> Subject: Scared

>

>

> Back about 9 years ago after have a scope I woke up

> with a bleeding

> ear. Found out my right ear drum has bursted. Ever

> since then one

> virtego and such. Been seeing Ent who been looking

> for cholesteatoma. I

> had stop seeing him for over four years. When I had

> virtego attack I go

> to pt lady that been trained to get your cystrals

> back into place. She

> notice my hearing was off in the right ear. I went

> back to Ent surgeon

> did the hearing test came back abnormal and now the

> cat scan shows two

> tumors and no air moving in the ear. Since April I

> have been sick with

> infections of the ears, sinus and brock and no

> energy. I am sceduled

> for surgey on the 14 of July. Only thing I been told

> it has to be done.

> It will be 3 hours or longer for surgery. I need

> advice of what I am

> facing for the rest of my life.

>

>

>

>

>

>

>

>

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  • 1 month later...

,

I too burst my ear drum (several times) before eventually developing a c-toma. I was fortunate enough not to encounter any vertigo.

If your ENT has diagnosed you with c-toma's then he is correct based on everything I have read; they have to be removed. Not doing so can cause far greater problems. Your doctor is the best person to tell you what to expect long term as every case is a bit different, but I can share my experience with you.

I have had 3 c-toma surgeries and was apprehensive before all of them. The first two attempts to resolve the issue with canal wall up (CWU) surgery ultimately failed. I just had my 3rd surgery about 6 weeks ago. This procedure was a bit different in that my surgeon performed a canal wall down (CWD) surgery. I am hopeful that my recent surgery will be my last to correct c-toma. The only long term issue most c-toma patients have is the need to keep the ear dry. That means exercising caution around water and water related sports.

Recovery varied greatly with all my surgeries. After my 2nd surgery I was out of work for two weeks. One week of which I had some vertigo and was "bouncing of the walls". My last surgery was the best yet. I only missed a week of work and had no vertigo at all. Either way plan on spending your first night in the hospital.

I hope you feel better and good luck with your surgery. Be sure to talk with your surgeon so you understand the procedure he/she will be performing.

Regards,

Rich

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of elizabeth_sobotta2001Sent: Saturday, June 18, 2005 1:18 AMcholesteatoma Subject: Scared

Back about 9 years ago after have a scope I woke up with a bleeding ear. Found out my right ear drum has bursted. Ever since then one virtego and such. Been seeing Ent who been looking for cholesteatoma. I had stop seeing him for over four years. When I had virtego attack I go to pt lady that been trained to get your cystrals back into place. She notice my hearing was off in the right ear. I went back to Ent surgeon did the hearing test came back abnormal and now the cat scan shows two tumors and no air moving in the ear. Since April I have been sick with infections of the ears, sinus and brock and no energy. I am sceduled for surgey on the 14 of July. Only thing I been told it has to be done. It will be 3 hours or longer for surgery. I need advice of what I am facing for the rest of my life.

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  • 5 months later...

Hi ,

Are you sure you are still hypothyroid and need medication? I don't know the

cause of your hypothyroidism (Hashimotos? Grave's disease leaving you hypo?),

but not all kinds of hypo are chronic.

Or maybe you require lower doses of the medication than you used to?

A colleague of mine who has Hashimoto's disease just like I do was told by her

doctor (he's " just " a GP but he seems rather knowledgeable for a GP) that

Hashimoto's (chronic inflammation of the thyroid gland) CAN go away if you treat

it aggressively enough. What he means by that is that you have to keep your TSH

really low or even suppressed (preferable lower than 0.09) for as long as you

have thyroid antibodies. He explained to my colleague that what the antibodies

really attack is the TSH, so you need to keep it really low during the

autoimmune attack (which of course can last for several years). When the

antibodies don't have anything to attack, they get tired of waiting and they

eventually give up. He actually told her that he has had patients diagnosed with

Hashimotos who have ended up cured (that is, not having to take thyroid hormone

anymore as their thyroid glands went back to normal function again once the

antibodies were gone). This could take ten or even fifteen years,

but they have been off the thyroid hormones for a couple of years and they

still have normal lab values and normal metabolism. They could lower their doses

and eventually go off the hormones all together. I must say that I was both

happy and sad hearing about this; happy about the idea of it happening to me,

and sad because I don't think it is possible. Every other doctor has told me

that Hashimoto's is a chronic disease and that you will have to be on thyroid

hormone replacement for the rest of your life.

What I am trying to say, in more general terms, is that you can be required to

lower your dose if your condition changes. Maybe that is what has happened in

your case, as the jittery feeling (and rapid heart beat, I assume, as the ER

ruled out a heart attack) is typical of too much thyroid hormone (although, in

my opinion, it is usually synthetic or natural T3 that causes those symptoms).

But, if your conversion from T4 from T3 is working as it should, and you have

more T4 than you need in your bloodstream, than you will convert too much T3 and

this could explain why you feel jittery.

Have you had your blood tested recently? If your TSH is extremely low and your

T4 and T3 are high, then this could mean that you need to lower your dose.

Good luck!

Catarina

---------------------------------

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

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This was me a year ago. I had been hypo for 11+ years and on

synthroid and cytomel. Two Octobers ago, I slowly started with

hyper symptoms (mild tremors, chills, occassional palpitations, etc.)

then full blow panic attacks. As it built, the panic attacks would

consistently hit about 4-6 hours after I took my morning meds. I

would get shakey, heart racing, sweaty and felt like I was going to

have a heart attack. I do not have any sugar issues or other health

concerns. If I skipped the meds I would have a better day.

At first the er and doc's told me it wasn't related. But, then I

decided to wean myself off the cytomel. The palpitations went away

immediately. I still felt hyped up so I starting cutting back on

the synthroid. I am now at a smidge of my original dose and have

been stable that way for 13 months. My tremor is gone and all hyper

symptoms. My TSH is within range but on the upper side of normal,

and T4 and T3 both look good. Some people have suggested adrenal

problems? Could be, but cutting my thyroid medication brought all

of it under control. I do not need the anti anxiety drugs they

originally wanted me to take, or anything else. Take note of your

symptoms, and be persistent with the doctors. Perhaps you need a

dose adjustment as well?

Sherry

>

> Hello,

>

> I did a search of the list to find an answer to my question and I

did

> find some helpful messages. It would be helpful, though, to have

a

> direct response.

>

> I have been taking synthroid for years (hypothyroidism). About

two

> months ago took levoxyl and thought I had an allergic reaction to

that

> so went back on synthroid (88).

>

> Recently, began having reactions again, which at first I did not

> attribute to the synthroid. I had been using SAMe and thought it

may

> be that. I am not taking SAMe now.

>

> There may be more than one thing going on here in terms of my

health,

> but without question synthroid is part of it because I ended up in

the

> ERearly Sunday morning. Heart attack was ruled out and they told

me to

> stop taking synthroid. Yesterday my doctor told me to take half

of the

> (88). Within minutes of taking it I felt jittery, not good at all.

>

> So here I am this morning, still feeling jittery (which I did not

after

> being off the synthroid for a full day) and I don't want to take

it but

> I am afraid of what might happen if I do not.

>

> I guess my question is whether not taking it could cause even

worse

> problems.

>

> I know any response cannot be considered medical advice.

>

> Please and thank you,

>

> patricia

>

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YOU ARE SOOOO RIGHT!!! EVERYONE IS SO DIFFERENT. I HAVE TO BE ON THE

BORDERLINE OF HYPER TO EVEN FEEL HUMAN AND I HAVE HAD SO MANY DOCTORS TELL ME...

NO NO NO YOU CAN'T BE AT THIS NUMBER... WELL, MY BODY TELLS ME DIFFERENT.

IT'S BEEN ALMOST 5 YEARS NOW OF HAVING HASHIMOTO'S THYROIDITIS. MY CURRENT

DOCTOR TOOK ME OFF OF THE CYTOMEL... I WANT TO BE BACK ON IT. I ALSO WANT TO

SWITCH TO ARMOUR. AS I HAVE BEEN ON LEVOTHROID FLUCTUATING BETWEEN 150 MCG AND

125.... ANY INPUT WOULD BE APPRECIATED

Sherry <hary722001@...> wrote:

This was me a year ago. I had been hypo for 11+ years and on

synthroid and cytomel. Two Octobers ago, I slowly started with

hyper symptoms (mild tremors, chills, occassional palpitations, etc.)

then full blow panic attacks. As it built, the panic attacks would

consistently hit about 4-6 hours after I took my morning meds. I

would get shakey, heart racing, sweaty and felt like I was going to

have a heart attack. I do not have any sugar issues or other health

concerns. If I skipped the meds I would have a better day.

At first the er and doc's told me it wasn't related. But, then I

decided to wean myself off the cytomel. The palpitations went away

immediately. I still felt hyped up so I starting cutting back on

the synthroid. I am now at a smidge of my original dose and have

been stable that way for 13 months. My tremor is gone and all hyper

symptoms. My TSH is within range but on the upper side of normal,

and T4 and T3 both look good. Some people have suggested adrenal

problems? Could be, but cutting my thyroid medication brought all

of it under control. I do not need the anti anxiety drugs they

originally wanted me to take, or anything else. Take note of your

symptoms, and be persistent with the doctors. Perhaps you need a

dose adjustment as well?

Sherry

>

> Hello,

>

> I did a search of the list to find an answer to my question and I

did

> find some helpful messages. It would be helpful, though, to have

a

> direct response.

>

> I have been taking synthroid for years (hypothyroidism). About

two

> months ago took levoxyl and thought I had an allergic reaction to

that

> so went back on synthroid (88).

>

> Recently, began having reactions again, which at first I did not

> attribute to the synthroid. I had been using SAMe and thought it

may

> be that. I am not taking SAMe now.

>

> There may be more than one thing going on here in terms of my

health,

> but without question synthroid is part of it because I ended up in

the

> ERearly Sunday morning. Heart attack was ruled out and they told

me to

> stop taking synthroid. Yesterday my doctor told me to take half

of the

> (88). Within minutes of taking it I felt jittery, not good at all.

>

> So here I am this morning, still feeling jittery (which I did not

after

> being off the synthroid for a full day) and I don't want to take

it but

> I am afraid of what might happen if I do not.

>

> I guess my question is whether not taking it could cause even

worse

> problems.

>

> I know any response cannot be considered medical advice.

>

> Please and thank you,

>

> patricia

>

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>

> Hi ,

>

> Are you sure you are still hypothyroid and need medication? I

don't know the cause of your hypothyroidism (Hashimotos? Grave's

disease leaving you hypo?), but not all kinds of hypo are chronic.

>

> Or maybe you require lower doses of the medication than you used

to?

>

> A colleague of mine who has Hashimoto's disease just like I do

was told by her doctor (he's " just " a GP but he seems rather

knowledgeable for a GP) that Hashimoto's (chronic inflammation of

the thyroid gland) CAN go away if you treat it aggressively enough.

What he means by that is that you have to keep your TSH really low

or even suppressed (preferable lower than 0.09) for as long as you

have thyroid antibodies. He explained to my colleague that what the

antibodies really attack is the TSH, so you need to keep it really

low during the autoimmune attack (which of course can last for

several years). When the antibodies don't have anything to attack,

they get tired of waiting and they eventually give up. He actually

told her that he has had patients diagnosed with Hashimotos who have

ended up cured (that is, not having to take thyroid hormone anymore

as their thyroid glands went back to normal function again once the

antibodies were gone). This could take ten or even fifteen years,

> but they have been off the thyroid hormones for a couple of years

and they still have normal lab values and normal metabolism. They

could lower their doses and eventually go off the hormones all

together. I must say that I was both happy and sad hearing about

this; happy about the idea of it happening to me, and sad because I

don't think it is possible. Every other doctor has told me that

Hashimoto's is a chronic disease and that you will have to be on

thyroid hormone replacement for the rest of your life.

>

> What I am trying to say, in more general terms, is that you can

be required to lower your dose if your condition changes. Maybe that

is what has happened in your case, as the jittery feeling (and rapid

heart beat, I assume, as the ER ruled out a heart attack) is typical

of too much thyroid hormone (although, in my opinion, it is usually

synthetic or natural T3 that causes those symptoms). But, if your

conversion from T4 from T3 is working as it should, and you have

more T4 than you need in your bloodstream, than you will convert too

much T3 and this could explain why you feel jittery.

>

> Have you had your blood tested recently? If your TSH is

extremely low and your T4 and T3 are high, then this could mean that

you need to lower your dose.

>

> Good luck!

> Catarina

>

Thank you for responding, Catarina

I've been on somewhat of an adventure since I wrote the message you

responded to.

Tired of waiting for my doctor to respond appropriately I took

matters into my own hands and went to a cardiologist. It appears

there is a heart issue but the picture is not clear, yet. I am on a

heart monitor today and off synthroid. The plan is to keep off

synthroid while continuing with tests related to heart and blood

pressure and then see an endo.

I have not been completely off synthroid for years so it will be

interesting to see what happens and I am certainly open to being

done with it, if I should be so lucky.

It seems to me now that all of this suffering (and yes it was

suffering, both emotional and physical) may lead to addressing a

problem I did not even know I had. If that is the case when all the

information is in then all of this will have counted for something.

I write this in the hope of helping someone else who may be in the

midst of a personal crisis.

Thanks again,

patricia

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>

> This was me a year ago. I had been hypo for 11+ years and on

> synthroid and cytomel. Two Octobers ago, I slowly started with

> hyper symptoms (mild tremors, chills, occassional palpitations,

etc.)

> then full blow panic attacks. As it built, the panic attacks

would

> consistently hit about 4-6 hours after I took my morning meds. I

> would get shakey, heart racing, sweaty and felt like I was going

to

> have a heart attack. I do not have any sugar issues or other

health

> concerns. If I skipped the meds I would have a better day.

>

> At first the er and doc's told me it wasn't related. But, then I

> decided to wean myself off the cytomel. The palpitations went

away

> immediately. I still felt hyped up so I starting cutting back on

> the synthroid. I am now at a smidge of my original dose and have

> been stable that way for 13 months. My tremor is gone and all

hyper

> symptoms. My TSH is within range but on the upper side of

normal,

> and T4 and T3 both look good. Some people have suggested adrenal

> problems? Could be, but cutting my thyroid medication brought all

> of it under control. I do not need the anti anxiety drugs they

> originally wanted me to take, or anything else. Take note of your

> symptoms, and be persistent with the doctors. Perhaps you need a

> dose adjustment as well?

>

> Sherry

Thank you for responding, Sherry

Yes, what you describe is close to what I was experiencing. They

did tell me to stop synthroid in the ER. They had some other ideas

though that (see my response to Catarina) the cardiologist said

were " silly " .

One of the problems I know I faced in this situation and others may

have too is the result of managed care. The primary physician and

his staff dropped the ball all the way through, no question. If I

had not been up to taking matters into my own hands who knows what

would be going on today. When I was at the ER my blood pressure had

hit 190 and it was 140, yesterday when I saw the cardio. I have had

low blood pressure all of my life and no other health problems.

Being a primary physician appears to require being a jack of all

trades and a master of none. Cliche aside, this is exactly how it

appears to me right now. Add to that a support staff that does not

know what they are doing. I have no doubt there is much suffering

and death that could be attributed to these factors.

It is so sad. What a state of affairs medicine is in, in the United

States.

We are told not to do this or that without doctor's advice. When

the advice is not forthcoming or you know it is not right for you

(meaning anyone out there reading this) fight for yourself. If you

are not satisfied with the treatment you are receiving get other

treatment.

Thanks again,

patricia

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> > This was me a year ago. I had been hypo for 11+ years and on

> > synthroid and cytomel. Two Octobers ago, I slowly started with

> > hyper symptoms (mild tremors, chills, occassional palpitations,

> etc.)then full blow panic attacks. As it built, the panic attacks

> would consistently hit about 4-6 hours after I took my morning

meds. I would get shakey, heart racing, sweaty and felt like I was

going to .............> >

> > Sherry

> ---------------------------------

> > Thank you for responding, Sherry

> > The primary physician and his staff dropped the ball all the way

through, no question. If I had not been up to taking matters into

my own hands who knows what would be going on today.

> patricia

>

I had lost my pcp to retirement when I went through this. So I

started looking for another doc and endo at the same time. I went

through 5 pcp's, 2 therapist (said I had no psych issues cause

panic), 1 psychiatrist(didn't need this one), and 2 endos before

finding my current docs. My current endo had to be very focused or

would have gone with the main stream thinking too. I gave the

facts, asked if I couldn't try this or that and reported back. She

came around and finally helped me stabalize. All of this could have

been avoided if they had first considered that my thyroid could be

out of whack and the labs weren't fully showing that.

Sherry

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> > > This was me a year ago. I had been hypo for 11+ years and on

> > > synthroid and cytomel. Two Octobers ago, I slowly started

with

> > > hyper symptoms (mild tremors, chills, occassional

palpitations,

> > etc.)then full blow panic attacks. As it built, the panic

attacks

> > would consistently hit about 4-6 hours after I took my morning

> meds. I would get shakey, heart racing, sweaty and felt like I

was

> going to .............> >

> > > Sherry

> > ---------------------------------

> > > Thank you for responding, Sherry

> > > The primary physician and his staff dropped the ball all the

way

> through, no question. If I had not been up to taking matters into

> my own hands who knows what would be going on today.

> > patricia

> >

> I had lost my pcp to retirement when I went through this. So I

> started looking for another doc and endo at the same time. I

went

> through 5 pcp's, 2 therapist (said I had no psych issues cause

> panic), 1 psychiatrist(didn't need this one), and 2 endos before

> finding my current docs. My current endo had to be very focused

or

> would have gone with the main stream thinking too. I gave the

> facts, asked if I couldn't try this or that and reported back.

She

> came around and finally helped me stabalize. All of this could

have

> been avoided if they had first considered that my thyroid could be

> out of whack and the labs weren't fully showing that.

> Sherry

>

I told the specialist I was not happy with the pcp and asked him to

refer me. He said I am sorry to tell you this, but that is a real

problem around here. I said, do you mean it would not matter if I

changed and he said yes.

I am sorry you suffered.

I got the psychosomatic bit too, no doubt with a dash of being a

woman if you know what I mean and I think you will. I got this from

a female secretary in the doctor's office. I add gender to indicate

it is not only men who have these stupid notions about women. I

could go on and on about this but think it would not be appropriate

for this list. The thing is no matter how much education is out

there about this stuff, it will take another hundred years, if ever,

to be done with it.

So, yes, I knew some were looking at me like a mental case, which

was funny to me in a way because I was not doing one thing that

could be considered symptomatic of mental illness. It just goes to

show how mixed-up and uninformed many of these people are. To the

extent possible I use these and many other experiences to develop

patience and tolerance. I do understand we are all human beings and

most of us are doing the best we can. Sometimes it's really hard to

think this way though.

Well, have to get ready to take my heart monitor back. :)

Feeling much, much better today.

Thanks again,

patricia

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I have you had the rest of your hormone levels checked? An

imbalance of them will mimick these sytmpoms. They can also

negatively impact how the thyroid is used.

> >

> > Hello,

> >

> > I did a search of the list to find an answer to my question and

I

> did

> > find some helpful messages. It would be helpful, though, to

have

> a

> > direct response.

> >

> > I have been taking synthroid for years (hypothyroidism). About

> two

> > months ago took levoxyl and thought I had an allergic reaction

to

> that

> > so went back on synthroid (88).

> >

> > Recently, began having reactions again, which at first I did not

> > attribute to the synthroid. I had been using SAMe and thought

it

> may

> > be that. I am not taking SAMe now.

> >

> > There may be more than one thing going on here in terms of my

> health,

> > but without question synthroid is part of it because I ended up

in

> the

> > ERearly Sunday morning. Heart attack was ruled out and they

told

> me to

> > stop taking synthroid. Yesterday my doctor told me to take half

> of the

> > (88). Within minutes of taking it I felt jittery, not good at

all.

> >

> > So here I am this morning, still feeling jittery (which I did

not

> after

> > being off the synthroid for a full day) and I don't want to take

> it but

> > I am afraid of what might happen if I do not.

> >

> > I guess my question is whether not taking it could cause even

> worse

> > problems.

> >

> > I know any response cannot be considered medical advice.

> >

> > Please and thank you,

> >

> > patricia

> >

>

>

>

>

>

>

>

>

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  • 1 month later...
Guest guest

In a message dated 3/7/2006 2:10:14 A.M. Central Standard Time, zztinau@... writes:

Print out a copy of your email and take it with you.Ask if you can talk about it before you start.I have often found that taking something I have written about a problem starts the conversation. Sometimes the therapist can just be unaware.I remember the first physio that I had before my first hip. Because I tend to be a bit stoic she had no idea of the effort I went to just to cope and the pain she caused me. The OT ended up talking to her one day about how to reduce my pain levels and she was quite shocked.We became great friends afterwards - but she never did learn to read how much pain I had.Good luck with it.Aussie Margaret Scared

Very good idea, I'll bet no one has ever done that before. He has a knee that's bothering him and I'm actually hoping he'll have to have something done to it. The lady that is my other PT I like now, I feel like I've known her for years. She asks me basically what I want to do and if I feel like it's helping. I think he was trying to impress someone that day, or he hadn't made his cry quota or something. I dunno, but I'll print it out and take it. Thanks!!

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