Re: Newly Diagnosed

[Guest guest]

>

> Hi everyone,

> I've just been diagnosed with Chiari 1 Malformation (15mm). My Neurologist

told me it was nothing to worry about and that I don't need to see him again,

nor do I need any ongoing monitoring, scans etc.

> The Neurologist tells me that my symptoms are related to anxiety not Chiari,

however when I look up this condition, I have so many of the symptoms!

> My question is whether this is something I need to be concerned about, and

what I should be doing from here? I am in Australia so unfortunately we don't

have any Chiari Institute or specialists that I know of. Thanks for your help.

>

Hi

A bit of good news = Australia does have a current specialist in acm

/syringomyelia and related conditions = Dr Stoodley . ( or is it Prof. ? ) I

can't recall Au english use in this title .

He's been a presenter at the asap confrence in the past , and has been studying

the csf dynamics /structural issues ect for quite a few years now , = from Au

member posts here I've only seen =can recall good things and experiences being

related as patient or parent discussion - in short I think you may be closer

than you realise to true acm specialist care and help .

As I recall now = there is also an AU suport group organized , where quite a few

members here and from wacma /asap have a yahoo /health discusion suport site

like this one ( and where regional /local issues are discussed by members = but

these group's typically also particate here too ... can someone help my failing

memory where the group listing might be ?

I think I would start by asking for referal to Dr Stoodley , he does use Cine

MRI as needed /and does grasp those points it's become a serious neurosurgical

concern == I think he also frequently helps get local =regional services in the

PT or OT , other specialists accessments ect coordiated through his practice too

= so hopefully you'll get good guidance on your way forward quickly through

seeing him .

in Paradise CA ( acm , eds , multiple sclerosis ect )

[Guest guest]

You need to see another Dr. Right away!! 15mm is a lot, and Chiari does not go

away. Please get another opinon.

[Guest guest]

Welcome to our group, - sounds like you've had a rough road of it. Hope

you can find some support here. How did the Armour make you feel worse? Usually

Armour comes in grains, not mg, so wondering of your dosage. Sometimes it takes

a while to adjust to taking thyroid meds - can be a shock to the system.

>

> Hi,

>

> My name is , I am 50-years-old and was just " officially " diagnosed with

Hashimoto's. I’ve had hypo and sometimes hyper symptoms for many, many years

but was not tested for TPO antibodies until 2004. I tested positive but my then

Endo felt that I did not require treatment and that instead, we should just

watch and wait. I also have a very strong family history of Hashimoto's

(daughter, sister, mother). Many Endo’s later, a TPO antibody retest and I

have now been placed on 15 mg of Armour. I took my first dose this morning and I

must say, I felt horrible all day!

>

> My Anti-TPO was 966 U/ml (lab ref <60) and my Endo said that my values are not

very high.

>

> Other Chronic Conditions:

>

> Congenital Adrenal Hyperplasia

> PCOS

> Hyperinsulinemia

> Ulcerative Colitis

> Grade II Diastolic Dysfunction

> Hyperlipidemia

> B12 deficiency

> Iron deficiency

> Folate deficiency

> D deficiency

>

> Thank you for letting me be part of your group.

>

[Guest guest]

Hi ,

Everything mentioned is true. I am also curious of what you meant by

feeling horrible.

From your symptoms and other diseases possibly you have a lot of thyroid

autoimmunity going on. Have you been tested for Graves' disease. Some Hashis

have antibodies common in Graves' as well as the TPO and TG abs. My daughter is

one such person. I see more and more people with this condition as well. The

tests are TSI and TBII.

The TSI test shows what percentage of stimulating TSH receptor antibodies that

stimulate thyroid cells, acting in place of TSH and causes the over production

of thyroid hormone. Normally a TSI result of >130% is a diagnosis of Graves'

disease. Healthy people do not produce TSI and have levels at <2%.

The TBII test measures both blocking and stimulating TSHR (TSH Receptor)

antibodies and comparing the TBII and TSI a knowledgeable doc can see how much

blocking activity is happening. Without this test the doctor is only getting a

partial picture of thyroid autoimmunity and thyroid function. TSHRabs can cause

either hyper or hypo thyroid dysfunction.

It gets complicated as the pituitary gland itself CANNOT distinguish between TSH

and TSH Receptors. When TSHRabs are present the TSH can be " normal " but the

freeT3/freeT4 tests can be quite low or high, but there's a lot of autoimmunity

going on inside the body including TED (thyroid eye disease) damage.

To explain a bit further, blocking antibodies block the action of TSH on thyroid

cells - the binding antibodies bind to the TSH receptor and prevent TSH and

other TSH receptor antibodies from reacting with the TSH receptor. You can have

Graves' disease but be hypO if these TSHRab are dominant. It is common for

TSHRabs to suddenly switch from stimulating to blocking and vise versa. (Again,

these antibodies are responsible for TED.) Although many docs never check for

the blocking antibodies it is important to get rid of these antibodies to

preserve your health and eyes; an antithyroid drug can do just that.

That is how my daughter is being treated. She takes small doses of an

antithyroid drug and a T4 drug called Unithyroid. The antibodies that stimulate

and block her thyroid keep her labs normal but she has massive autoimmunity

going on damaging her eyes, skin and thyroid. This protocol is stopping tissue

destruction. The downside is MOST doctors will NOT test or treat.

NOTE: TPO antibodies are found in 80% of Graves' patients, so they are NOT

always all-telling for Hashis. Above normal TSI and TBII results can also mean

Hashitoxicotis.

Best wishes,

~Bj

> >

> > Hi,

> >

> > My name is , I am 50-years-old and was just " officially " diagnosed

with Hashimoto's. I’ve had hypo and sometimes hyper symptoms for many, many

years but was not tested for TPO antibodies until 2004. I tested positive but my

then Endo felt that I did not require treatment and that instead, we should just

watch and wait. I also have a very strong family history of Hashimoto's

(daughter, sister, mother). Many Endo’s later, a TPO antibody retest and I

have now been placed on 15 mg of Armour. I took my first dose this morning and I

must say, I felt horrible all day!

> >

> > My Anti-TPO was 966 U/ml (lab ref <60) and my Endo said that my values are

not very high.

> >

> > Other Chronic Conditions:

> >

> > Congenital Adrenal Hyperplasia

> > PCOS

> > Hyperinsulinemia

> > Ulcerative Colitis

> > Grade II Diastolic Dysfunction

> > Hyperlipidemia

> > B12 deficiency

> > Iron deficiency

> > Folate deficiency

> > D deficiency

> >

> > Thank you for letting me be part of your group.

> >

>