Hashitoxicosis = total thryoidectomy in the New Year... no alternatives?

[Guest guest]

Hello again

Do I have a choice? Is there an alternative?

I have been sobbing in the surgeon's office, but I finally relented and agreed to a total thyroidectomy because I can't see any alternatives and he is promising to 'cure' me (but we all know that lovely as that sounds, it probably isn't the case).

So, apparently, I don't have Graves, or a nodule as I've been told by several endos, but hasimoto's which is toxic - so hyper/hypo hashitoxicosis (I've been telling them that for the past 3 years but they told me it was impossible), there is no cure, ATDs will just mess me up because I will continue to swing hyper/hypo and they will exacerbate my hypo swings, a partial thyroidectomy is a waste of time because I will still have hashi anti-bodies which will mess up any remaining thyroid tissue and the disease will keep recurring, my only option is total thyroidectomy and levothyroxine. If I don't respond to levothyroxine there are other options including T3/T4 combos available on the NHS (apparently - which will be news to some of you).

He was one of those god-like surgeons with an air of happy confidence that I really wanted to believe in, I want to believe he can cure me, I want to believe it's all going to be ok.

He said I am 'critical' and in danger of going into thyroid storm, he thinks I have osteoporosis (so do I), he says I should have 'no problem' getting pregnant and removal will sort out all my hormonal problems too. He also said the saliva adrenal test was not useful and irrelevant to my case (I have adrenal exhaustion according to genova). At least he gave me the option of removal before or after christmas.

I've just spoken to a lovely friend who's had a 9 year struggle after total thyroidectomy and now being diagnosed with CFS. What do I do now? Please help me because I feel like hiding in my duvet.

jo

x

[Guest guest]

Jo, I'd really like you to discuss this with at the Iodine group.

Having gone through an issue of this nature, she may help you to understand the

consequences....

iodine/

Cheers,

JOT

[Guest guest]

Dear Jo,

I have Hashimoto's disease. I have been taking iodine for 2 years +. One of my anti-bodies has gone down below "alert" level and the other one is coming down too. As far as I know I have never had a Hashi attack from taking iodine. It has also cured my fibrocystic breast disease in about seven weeks after years spent putting smelly and very unsexy hormone creams on my chest. But be careful, if you take iodine without selenium or selenium without iodine it can make you feel bad

[Guest guest]

Dear Jo, I would highly recommend you also read Dr Peatfield's

speech about iodine which he gave at our last TPA Meeting in Yorkshire last April.

See the attached.

Luv - Sheila

Dear Jo,

I have Hashimoto's

disease. I have been taking iodine for 2 years +. One of my

anti-bodies has gone down below " alert " level and the other one is

coming down too. As far as I know I have never had a Hashi attack from

taking iodine. It has also cured my fibrocystic breast disease in about

seven weeks after years spent putting smelly and very unsexy hormone creams on

my chest. But be careful, if you take iodine without selenium or selenium

without iodine it can make you feel bad.

Buist gives good

advice. She is doing a training course to be a naturopathic doctor,

if I remember rightly (I don't think this diploma or job description

exists in UK). She has had thyroid cancer, her kids are hypothyroid and

her husband has had Hashis (his anti-bodies disappeared after following the

Iodine Protocol). She has also had the " usual " treatment for

thyroid cancer before she started using iodine, so she has a lot of experience

of traditional treatment.

I really owe her an awful lot

of the good health that I enjoy today. www.naturalthyroidchoices.com

is her site.

MacG.

___

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Dr Peatfield's speech.doc

[Guest guest]

Oh poor you.....Big hugs,

Jo how does he know you don't have Graves or toxic nodule, did he give you a

scan

or test your antibodies? My surgeon never pushed me at all and I was swinging

hyper/hypo on a daily basis........although I did tell him I was at the point of

cutting

my own throat, I'd went into thyroid storm a couple of months before too.

He had all my results/antibodies and went over them with me and showed me

pictures of his work, my scar is fantastic.......I can hardly speak though!

Did he tell you about complications like vocal chord paralysis, damage to

parathyroids etc........I have to say it wasn't my surgeons fault my vocal chord

was

damaged, my thyroid was all shrivelled up and near enough stuck to chord. He

knew thyroid was smaller than normal before he did op because he sent me for

ultrasound first so he had an idea what was going on.......are you being sent

for a

scan first?

Are you going to be getting pre op tests........you're still hyper aren't you??

My op was cancelled because my levels were still high and I had to wait, can't

remember exactly...maybe another month......your surgeons saying he can do it

before or after Xmas. There's a bigger chance of thyroid storm doing op while

hyper!

The disregard of your cortisol levels being low IMO is alarming because surgery

is going to impact your already knackered adrenals which are still taking a

bashing if

your still at hyper levels. Did he tell you how long you'll be in hospital, mine

liked

you to be in at least 3 nights to monitor calcium levels.

The other thing is ....really sorry if this all sounds negative, I just want you

to know

the other side......my surgeon told me too he'd make sure my levels were good,

also

if I wanted there was a choice of natural thyroid, I'm sure I posted it all on

here at

the time and granted I got T3 through him and my bowel surgeon without asking

BUT I only see him every 4-6 months AND I'm still only seeing him because I have

vocal chord paralysis.

I think the norm is 1 or 2 post op check ups, again every time I've seen him and

I'm low which I always am, he write's letters and kicks ass.......my endo's his

ex wife

lol, but he can only advise as he's not 'in charge' of my replacement.....that's

down to GP or endo.

I had Hashi's too but the Graves was more dominant so I don't know enough to

know about other options and I totally get that you just want to get better,

I've

been there and being toxic is terrible/awful/bloody horrendous :-) I do know he

said my thyroid was so shrivelled up due to all the antibody attacks and I think

both Hashis and Graves kill the thyroid off eventually, btw they also found

nodules

on mine that never showed up on ultrasound (teeny weeny dodgy ones) and I was

offered RAI which I refused.

That said I don't regret removing thyroid, as soon as I woke up it was like

someone

just switched the lights back on and I had a great few weeks but been hypo

since,

I've got the added bowel problem though.

Just think about it carefully, is there any chance you could get a second

opinion or

ask some more questions of surgeon.

Wish I could give more help.....Hugs

Love Tess x

>

> Hello again

> Do I have a choice? Is there an alternative?

> I have been sobbing in the surgeon's office, but I finally relented and agreed

to a total thyroidectomy because I can't see any alternatives and he is

promising to 'cure' me (but we all know that lovely as that sounds, it probably

isn't the case).

> So, apparently, I don't have Graves, or a nodule as I've been told by several

endos, but hasimoto's which is toxic - so hyper/hypo hashitoxicosis (I've been

telling them that for the past 3 years but they told me it was impossible),

there is no cure, ATDs will just mess me up because I will continue to swing

hyper/hypo and they will exacerbate my hypo swings, a partial thyroidectomy is a

waste of time because I will still have hashi anti-bodies which will mess up any

remaining thyroid tissue and the disease will keep recurring, my only option is

total thyroidectomy and levothyroxine. If I don't respond to levothyroxine

there are other options including T3/T4 combos available on the NHS (apparently

- which will be news to some of you).

>

[Guest guest]

Jo,

I copied this from one of the Graves sites...... Dunno if it'll help

The more I read about your thyroid history (which includes: originally negative

for Graves ab; postpartum thyroiditis; falling hypo very fast; hard goiter; etc)

the more I wonder if your issue has more to do with the thyroiditis and less due

to Graves. In particular: Hashitoxicosis.

Have you looked into Hashitoxicosis? Read this article:

http://healthtipjim.blogspot.com/2010/07/hashitoxicosis-hyperthyroid-from.html

" Normally the thyroid releases these stored hormones, into the blood stream, at

a rate that is regulated by the pituitary gland....With Hashitoxicosis however,

hormone is released at a sporadic rate that is not properly regulated and as a

result, the patient experiencing this, will have spells of mild Hashitoxicosis,

despite the fact that they are actually hypothyroid "

" These surges of extra hormone actually cause rapid but short-lived spells of

hyperthyroidism however, in some patients with highly elevated thyroid antibody

levels (which are the antibodies that are markers for inflammation: TPOab or

TGab), these Hashitoxicosis spells may occur more frequently. This is especially

true in earlier stages of the disease and may seem like ongoing hyperthyroidism;

to the patient and their doctors may at-first believe they are manifesting

Graves' rather than Hashitoxicosis. "

_____

Hashitoxicosis is when a person experiences periods of lymphocyte attack - which

caused thyrotoxicosis due to severe thyroiditis -- which can dump huge amounts

of hormone all at once without warning. Imagine this being like busting a water

balloon open - which can be at such high levels that it becomes life

threatening. In most cases, these people ALSO are dealing with the stimulating

antibodies of Graves (which you now are showing positive for) and adding even

more complications to the disease.

I have another friend who had Hashitoxicosis and she tried 4 years to get her

thyroid under control using ATDs. But the problem is that ATD medicines will not

help reduce hormones that have come from cells bursting from this amount of

severe inflammation. ATD will help reduce *mild* inflammation - but can't help

much with severe inflammation.

But more importantly -ATD can only reduce the amount of hormone that will be

made in the future. It can't prevent hormone release from broken cells.

My friend eventually opted for a total thyroidectomy because the hormone dumping

could not be controlled. She really wanted to stay on meds, and she tried for a

long time - but it came to the point where she needed to get the thyroid to stop

dumping hormone.

Also, Hashitoxicosis can cause life threatening cases of hyPErthyroid (thyroid

storm) -- because when you have that much inflamation, it is like popping a

water balloon which floods the body VERY quickly with pre-make hormone.

The body will suddenly have massive amounts of hormone dumped -- but then it

will be used up and the person becomes HyPO for a while - because those thyroid

cells are now non-functional.

I really don't know if that's what you have -- but since you have a history of

thyroiditis already (before you tested positive for Graves) that could be what

you are dealing with

Love Tess

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