RE: greetings & question re: Graves disease

February 19, 2001

Hi ,

I'm from the UK too, but now I live in Sydney Australia. When I first

discovered this website I was living in London and had just been diagnosed

with Graves.

I think this website has literally saved me from having immeidiate and ill

considered RAI or Thyrodectomy, so I just wanted to tell you that you've

come to the right place if you want information. Something that helped me

when I started researching was simply to do searches on the archive sites.

, I'm sorry to hear your health is deteriorating, why is this? Why

are you ahving to use a wheelchair? Are you suffering from any other

identified proiblems? Have you got eye problems? What age are you (all

these questions are only if you want to share such information - myself I am

34, been ill since I was 32, got diagnosed hyperthyroid in June 2000, got

diagnosed with Graves, Feb 2001! Been on ATD since Nov. and feeling REALLY

GOOD! )

Do keep in touch and have a look at those archives , I found they were a

really helpful way to gain information.

DAWN ROSE

>From: " clair " <slowly@...>

>Reply-hyperthyroidism

>hyperthyroidism

>Subject: greetings & question re: Graves disease

>Date: Tue, 20 Feb 2001 01:15:59 -0000

>

>Hi I am from UK and nearly fainted when I saw this list of 199

>members! I have a burning question and I am sure someone here must

>have info I dont know about / links websites, etc.

>

>I am in remission from Graves disease - for which I had drug

>treatment 'block and replace' type. my health has continued to

>deteriorate (I now use wheelchair some of time). can anyone direct

>me to information which contain answers that my national health

>service doctors dont know / missed / ignoring.

>

>also my daughter is disabled - my mother recently said someone told

>her if I had undiagnosed Graves in pregnancy it could have caused her

>impairments.

>

>anyone got any info I need to knwo please?

>

>thanks.

>

>clair

>

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February 20, 2001

Hi Clair...I'm not sure what your question is. Are you saying your health

has deteriorated due to Graves or another illness? I can direct you to an

autoimmune disorder website http://www.amfoundation.org/autoimmune.htm I'm

also in remission and just had a followup blood test this morning. Let us

know the particular questions you have! Mona

greetings & question re: Graves disease

Hi I am from UK and nearly fainted when I saw this list of 199

members! I have a burning question and I am sure someone here must

have info I dont know about / links websites, etc.

I am in remission from Graves disease - for which I had drug

treatment 'block and replace' type. my health has continued to

deteriorate (I now use wheelchair some of time). can anyone direct

me to information which contain answers that my national health

service doctors dont know / missed / ignoring.

also my daughter is disabled - my mother recently said someone told

her if I had undiagnosed Graves in pregnancy it could have caused her

impairments.

anyone got any info I need to knwo please?

thanks.

clair

February 20, 2001

Has your doctor checked you out for any of the autoimmune mixed connective

tissue diseases? A complete ANA panel including tests for SSA, SSB, anti-DNA

etc. will yield a lot of information.

None of the meds you mentioned should have caused the symptoms you mention.

The risk of some of those meds with having a thyroid condition is generally

hypertensive crisis. This would have caused high blood pressure and possibly

mini strokes which you didn't mention having had.

Your Graves' disease could have caused muscle wasting and atrophy, but it's

rarely to the extent you mention. Graves' also causes lots of nutrient

deficiencies and you might still have some deficiencies that need correcting.

Let us know how things work out with the vegetarian diet and what new tests

you have done.

February 20, 2001

greetings dawn and mona thanks for your message. I do not know what s causing

condition but they

say not thyroid, as the graves was still in remission at last test. erm hope

this not too much

information, though it seems to be quite technical here (i am lost with all

these letters and

numbers I just did what the docs told me!).

I am nearly 28, I probably also have which accounts for some of the misdx too.

had my daughter oct 1996 though her problems (only small size at that time)

noted at 27 weeks

gestation.

misdiagnosed and treated (paroxetine, and then dothiepin) for severe depression

and anxiety in

early 1997.

dx with severe graves disease jan 1998 weiging in at just over 6 stone with 120

bmp heart rate

resting. immediate drug treatment to steady heart and block and replace my

thriod (started on beta

blockers and carboimazole, then eventually carbimazole and thyroxine).

during treatment I never appeared to get better though I responded fairly well

to the drugs, my

improving blood tests were a surprise to the doctors.

18 months treatment which finished may 1999 - .

wheelchair is a tool to freedom accepted in late summer 1999 - now jus6 need

accessible home! I am

too busy to give in to exhaustion, weakness and pain, and too sensible to worsen

by continuing to

over do it - now have muscle spasms, unreliable co-ordination, poor circulation

and legs turning

in. constant weight of 7 1/2 stone and sensitive skin and some eye problems not

pain particular

but sometimes seem to have trouble getting the focus and them doing what i want.

my doctors seem to think this doesn't happen any way to do with graves. what

I'm wondering if it's

so unique and so unconnected - or if its anything to do with the different drugs

I had been pumped

with over the few years (esp the dothiepin which said do not take if you have

thyriod probems I

think). I also have recently been found to have a floating kidney which I

amsure was not

there before. yes my body seems to be fallgin apart.

I have refferd to 2 different rheumatologists with no definite dx and still

await neurologist. i

have had hydro but made no progress though it seemed to help with stiffness. I

have just gone

vegan which has done wonders for my appetite.

this sound familiar to anyone?

thanks in advance for any info.

February 20, 2001

This does not sound familiar at all. I know being too hypo can cause the

joints to ache but you're beyond aches. Did the docs do a complete blood

workup? Did they rule out all autoimmune disorders? I'm sorry to hear

you're suffering and getting no answers from the medical community - this

may take time so be persistent in searching for an answer to your

debilitating health. Change doctors if necessary or possible. Take care

and keep in touch, Mona

Re: greetings & question re: Graves disease

greetings dawn and mona thanks for your message. I do not know what s

causing condition but they

say not thyroid, as the graves was still in remission at last test. erm

hope this not too much

information, though it seems to be quite technical here (i am lost with all

these letters and

numbers I just did what the docs told me!).

I am nearly 28, I probably also have which accounts for some of the misdx

too.

had my daughter oct 1996 though her problems (only small size at that time)

noted at 27 weeks

gestation.

misdiagnosed and treated (paroxetine, and then dothiepin) for severe

depression and anxiety in

early 1997.

dx with severe graves disease jan 1998 weiging in at just over 6 stone with

120 bmp heart rate

resting. immediate drug treatment to steady heart and block and replace my

thriod (started on beta

blockers and carboimazole, then eventually carbimazole and thyroxine).

during treatment I never appeared to get better though I responded fairly

well to the drugs, my

improving blood tests were a surprise to the doctors.

18 months treatment which finished may 1999 - .

wheelchair is a tool to freedom accepted in late summer 1999 - now jus6 need

accessible home! I am

too busy to give in to exhaustion, weakness and pain, and too sensible to

worsen by continuing to

over do it - now have muscle spasms, unreliable co-ordination, poor

circulation and legs turning

in. constant weight of 7 1/2 stone and sensitive skin and some eye problems

not pain particular

but sometimes seem to have trouble getting the focus and them doing what i

want.

my doctors seem to think this doesn't happen any way to do with graves.

what I'm wondering if it's

so unique and so unconnected - or if its anything to do with the different

drugs I had been pumped

with over the few years (esp the dothiepin which said do not take if you

have thyriod probems I

think). I also have recently been found to have a floating kidney which I

amsure was not

there before. yes my body seems to be fallgin apart.

I have refferd to 2 different rheumatologists with no definite dx and still

await neurologist. i

have had hydro but made no progress though it seemed to help with stiffness.

I have just gone

vegan which has done wonders for my appetite.

this sound familiar to anyone?

thanks in advance for any info.

February 21, 2001

In a message dated 2/21/01 7:42:39 PM Central Standard Time, tarbi@... writes:

Subj: Re: greetings & question re: Graves disease

Date: 2/21/01 7:42:39 PM Central Standard Time

From: tarbi@... (Zoey)

Reply-to: hyperthyroidism

hyperthyroidism

Hi Mona,

I also had a blood test yesterday and got some of the results today. So far

so good. My Free T4 is 1.4 (.75 - 2.0) and TSH is .73 (.35 - 5.50).

Since the Free T3 (by dialysis) had to be frozen and sent out, the results

won't be back until Friday. I think I would feel better if I could get my

T4 a little higher but the last time I did that (1.7) my TSH dropped

slightly below the norm and I was afraid of going hyper again. I started

experimenting with a few drops of bugleweed and lemon balm in water.

Something Elaine had suggested to me. I don't know whether it's the herbs

that helped bring my numbers down or whether my life has become somewhat

less stressful than around the time of my last blood test. Good luck with

your results and let us know what happens. All my best, Zoey

Where did you get the bugleweed? is it fresh lemon balm? how do you take each? thanks Kim

February 21, 2001