Re: Elaine, and everyone who remembers me :o)

[Guest guest]

Hi Peta

Your heart rate makes it sound as if you're hyper, but I am hypo with a rapid

heart rate, even on beta blockers.

I think you may have to get new blood work to know for sure. After all you were

on a thyroid hormone blocker for the past while and have come off it. Your body

may just have been slow reacting to the change. Do you know what your bloodwork

numbers were? You might have been at one end or the other of the range on that

particular day...It is possible for people to need RAI more than once. Or you

could be hypo. The symptoms do sound familiar and seem to be consistant with

thyroid symptoms but what they mean is not clear.

Kate

PParkegail@... wrote:

> Hi Elaine,

> I hope you remember me - I'm Peta (I've been following the board every

> day, since having been a year in 'remission' whatever that means!)

> A year ago I had Radioactive Iodine uptake test - nobody came back to me with

> any results, my endo went silent and I went from being monitored every

> fortnight and seeing a specialist regularly to nothing. Id assumed that 'no

> news must be good news' and proceeded to wean myself off the Carbimazole

> myself. Up until about 3 months ago, I was down to half a tab every week,

> then I stopped altogether and felt fine. About 6 weeks ago I went to my new

> G.P. and explained the situation (that I'd slipped thru the net etc) and she

> immediately ordered a blood test. I phoned a week later to be told that the

> test was NORMAL!! I was amazed! Anyway, that was about 6 weeks ago and then 2

> days ago I started feeling awful - right out of the blue (yes, I'd eaten a

> lot of chocolate over Easter etc..) so at first I thought it was a bout of

> low blood sugar, but then some familiar feelings crept up, knees shaky,

> feeling totally unable to cope or think straight - all wobbly and horrible.

> The only way I can seem to keep warm is to get into a hot bath and within

> minutes I'm sweating like I'm in a sauna, and this goes on ages after I'm out

> of the tub. I can't seem to regulate my temperature (this bath thing never

> really went away). I haven't put on any weight, but am finding it really hard

> to lose (I am one of the 'lucky' ones who didn't lose weight when Hyper!!)

> So, am I Hyper again, or Hypo? - are the symptoms similar? For a while my

> temperature was quite low every morning and my heartrate is around 82 when

> sitting still, and can leap to 130 if I go upstairs suddenly.

> I don't know what to do!! If I took a Carbimazole - what if I'm Hypo now and

> they thought the test was normal?

> I teach in a school for profoundly disabled children with Cerebral Palsy and

> am due to go back on Monday - I don't think I can cope feeling like this.

> I'm SO glad to have you guys to talk to. After a year of being O.K. this is

> SO depressing!

> Thank you, everyone,

> Peta x

>

>

[Guest guest]

I agree with Kate, Peta. You sound just like I was for a lot of years, hypo

then hyper, then hypo again. Heart palpitations, sweating, goose bumps,

lethargy... How's your skin? I suspect you'll see a change in your bloodwork

now. I'd let the doc know that you're having trouble and ask for another

workup.

Donna

Re: Elaine, and everyone who remembers me )

Hi Peta

Your heart rate makes it sound as if you're hyper, but I am hypo with a rapid

heart rate, even on beta blockers.

I think you may have to get new blood work to know for sure. After all you

were

on a thyroid hormone blocker for the past while and have come off it. Your

body

may just have been slow reacting to the change. Do you know what your

bloodwork

numbers were? You might have been at one end or the other of the range on

that

particular day...It is possible for people to need RAI more than once. Or you

could be hypo. The symptoms do sound familiar and seem to be consistant with

thyroid symptoms but what they mean is not clear.

Kate

PParkegail@... wrote:

> Hi Elaine,

> I hope you remember me - I'm Peta (I've been following the board every

> day, since having been a year in 'remission' whatever that means!)

> A year ago I had Radioactive Iodine uptake test - nobody came back to me

with

> any results, my endo went silent and I went from being monitored every

> fortnight and seeing a specialist regularly to nothing. Id assumed that 'no

> news must be good news' and proceeded to wean myself off the Carbimazole

> myself. Up until about 3 months ago, I was down to half a tab every week,

> then I stopped altogether and felt fine. About 6 weeks ago I went to my new

> G.P. and explained the situation (that I'd slipped thru the net etc) and she

> immediately ordered a blood test. I phoned a week later to be told that the

> test was NORMAL!! I was amazed! Anyway, that was about 6 weeks ago and then

2

> days ago I started feeling awful - right out of the blue (yes, I'd eaten a

> lot of chocolate over Easter etc..) so at first I thought it was a bout of

> low blood sugar, but then some familiar feelings crept up, knees shaky,

> feeling totally unable to cope or think straight - all wobbly and horrible.

> The only way I can seem to keep warm is to get into a hot bath and within

> minutes I'm sweating like I'm in a sauna, and this goes on ages after I'm

out

> of the tub. I can't seem to regulate my temperature (this bath thing never

> really went away). I haven't put on any weight, but am finding it really

hard

> to lose (I am one of the 'lucky' ones who didn't lose weight when Hyper!!)

> So, am I Hyper again, or Hypo? - are the symptoms similar? For a while my

> temperature was quite low every morning and my heartrate is around 82 when

> sitting still, and can leap to 130 if I go upstairs suddenly.

> I don't know what to do!! If I took a Carbimazole - what if I'm Hypo now and

> they thought the test was normal?

> I teach in a school for profoundly disabled children with Cerebral Palsy and

> am due to go back on Monday - I don't think I can cope feeling like this.

> I'm SO glad to have you guys to talk to. After a year of being O.K. this is

> SO depressing!

> Thank you, everyone,

> Peta x

>

>

[Guest guest]

Thanks, Kate!

I went to the locum doc yesterday and he wants a full screening of bloods

taken. I'll try and do that today and I'm going to my regular doc today just

to talk it over with her. By the way, I didn't ever have RAI treatment - just

the test for imaging. The locum reckons that (as you say) my body has just

realised that no more Carbimazole is going into it (I was down to a really

low dose, but maybe I needed it) - He called Carbimazole a Thyroid poison

(his explanation of why it works) He is an old school guy, and then started

burbling on about RAI treatment and surgery, and I made my excuses and left!!

Thanks for the response, Kate,

Big hugs from the U.K.

Peta x

[Guest guest]

Thanks, Donna, I will!

Love,

Peta x

[Guest guest]

Thanks, ,

I'll make a note of the numbers when I go and see her this afternoon! It's

so nice to have support from this group.

Love,

Peta xx

[Guest guest]

p.s. , yesterday I found out that my original figure that came back 18

months ago was 8 - that sounds pretty high to me - no wonder me knees were

knocking!!!

- Peta x

[Guest guest]

Thanks, , I'll check that out this afternoon. Whatever it was that was 8

over a year ago had them putting me on emergency Propanalol, then Carbimazole

at 10mg per day! I'll find out soon I hope!

Love,

Peta x

[Guest guest]

Hello Peta - glad to hear that the past year has been a good one for you. All I

can say is what I'd do if it was me - if it was me I would go back to the

doctor's and politely but firmly ask for the FIGURES that were the results of

the test taken 6 weeks ago - being told they were normal is not good enough. In

this country the normal range for TSH is 0.5-5.0 in most places. (Hopefully

they'll have done free T3 and free T4 as well, but wouldn't bank on it, although

you do really need these to get a full picture.) If my TSH is 2 - I don't have

the energy to roll over in bed let alone get out of it and lead a useful life.

My body seems very sensitive to small differences in levels and so I can be hypo

and/or hyper with all my figures apparently normal. You need those figures in

order to compare with previous ones and you need those figures in order to

compare with any you get now. As for the symptoms themselves I get all these

when I'm hypo and when I'm hyper, so I couldn't tell from them - although I do

get slight differences between the two but they wouldn't be the same for anyone

else. Good Luck,

Elaine, and everyone who remembers me )

Hi Elaine,

I hope you remember me - I'm Peta (I've been following the board every

day, since having been a year in 'remission' whatever that means!)

A year ago I had Radioactive Iodine uptake test - nobody came back to me with

any results, my endo went silent and I went from being monitored every

fortnight and seeing a specialist regularly to nothing. Id assumed that 'no

news must be good news' and proceeded to wean myself off the Carbimazole

myself. Up until about 3 months ago, I was down to half a tab every week,

then I stopped altogether and felt fine. About 6 weeks ago I went to my new

G.P. and explained the situation (that I'd slipped thru the net etc) and she

immediately ordered a blood test. I phoned a week later to be told that the

test was NORMAL!! I was amazed! Anyway, that was about 6 weeks ago and then 2

days ago I started feeling awful - right out of the blue (yes, I'd eaten a

lot of chocolate over Easter etc..) so at first I thought it was a bout of

low blood sugar, but then some familiar feelings crept up, knees shaky,

feeling totally unable to cope or think straight - all wobbly and horrible.

The only way I can seem to keep warm is to get into a hot bath and within

minutes I'm sweating like I'm in a sauna, and this goes on ages after I'm out

of the tub. I can't seem to regulate my temperature (this bath thing never

really went away). I haven't put on any weight, but am finding it really hard

to lose (I am one of the 'lucky' ones who didn't lose weight when Hyper!!)

So, am I Hyper again, or Hypo? - are the symptoms similar? For a while my

temperature was quite low every morning and my heartrate is around 82 when

sitting still, and can leap to 130 if I go upstairs suddenly.

I don't know what to do!! If I took a Carbimazole - what if I'm Hypo now and

they thought the test was normal?

I teach in a school for profoundly disabled children with Cerebral Palsy and

am due to go back on Monday - I don't think I can cope feeling like this.

I'm SO glad to have you guys to talk to. After a year of being O.K. this is

SO depressing!

Thank you, everyone,

Peta x

[Guest guest]

<In this country the normal range for TSH is 0.5-5.0 in most places.

Hi,

My name is and I'm on PTU for Graves'. dx. 9/02. I joined this

group recently because I'm especially interested in alternative

health care.

Over on Graves_support it's been mentioned that the new U.S.

recommendation for the TSH upper limit is 3.04 (Amer. Assoc. of

Clinical Endocrinologists) and there's even been a move to lower it

further, as 95% of people are below 2.5 (with 2.0 recommended in

thyroid replacement; this is from National Academy of Clinical

Biochemistry; all the info is on thyroid-info.com).

I can't get my endo to believe I'm hypo at TSH 2.3--if only we could

get the drs. to keep up with these changes!

Best wishes,

[Guest guest]

Hello Peta - if that's your TSH then you were hypO - in which case you shouldn't

have been on Carbimazole at all... Was that TSH or was it something else? We

really need to have the reference ranges too just to make sure we all know what

we're talking about.

Re: Elaine, and everyone who remembers me )

p.s. , yesterday I found out that my original figure that came back 18

months ago was 8 - that sounds pretty high to me - no wonder me knees were

knocking!!!

- Peta x

[Guest guest]

Hi,

I've been out of town and just started following this thread. I agree that

you need to get copies of your blood test results. Just hearing that you're

normal isn't enough. Take care, elaine