desperate

[Guest guest]

Hi Silvia. I'm sorry your daughter is going through such a rough time.

What dosage of prednisone is your daughter taking? Prednisone is a steroid

and could be causing the facial swelling. You should have her call her

doctor right away.

a

>

>

>

> Good morning to everyone who reads this message;

>

> I am the mother of a 20 year old that was diagnosed with ra about 6

> years ago, this summer we went to georgia for vacations. My

> daughter had the most terrible flare-up she has very had. We came

> back right away, once here in town I took her to our family doctor.

> The only appointment I could get with her rheumatologist is til

> December 9th, 2004.

>

> Our family doctor put her on prednison for her swelling and on

> Methotrexate and vioxx (which she is not taking anymore). After a

> few months Methotraxate was not working so he put her on Enbrel.

> She has had about 3 injections now, but this weekend she was so

> swollen on her face (only the face) her eyes were almost closed.

> She kinda looked like the people that are on steriods.

>

> I am so desperate and feel so unuseful that I can not do anything

> for my daughter. If any one has any suggestions or is going through

> something like this please, please let me know. She was tested for

> lupus and it was negative. The only thing that came up was the ra on

> her blood work.

>

> please answer my desperate message. My daughter is suffering so

> much.

>

> Silvia

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I agree with the other ladies, please contact the doctor, and let him

know what's going on. I am not familiar with Enbrel, but it could be

an allergic reaction to a med. The prednisone does cause puffiness

in the face, so it's hard to tell.

I started on a new med recently, and my face swelled up like a

balloon. It was an allergic reaction to the med, so I contacted the

doc, and stopped taking it. Please keep us posted, Tawny

>

>

> Good morning to everyone who reads this message;

>

> I am the mother of a 20 year old that was diagnosed with ra about 6

> years ago, this summer we went to georgia for vacations. My

> daughter had the most terrible flare-up she has very had. We came

> back right away, once here in town I took her to our family

doctor.

> The only appointment I could get with her rheumatologist is til

> December 9th, 2004.

>

> Our family doctor put her on prednison for her swelling and on

> Methotrexate and vioxx (which she is not taking anymore). After a

> few months Methotraxate was not working so he put her on Enbrel.

> She has had about 3 injections now, but this weekend she was so

> swollen on her face (only the face) her eyes were almost closed.

> She kinda looked like the people that are on steriods.

>

> I am so desperate and feel so unuseful that I can not do anything

> for my daughter. If any one has any suggestions or is going

through

> something like this please, please let me know. She was tested for

> lupus and it was negative. The only thing that came up was the ra

on

> her blood work.

>

> please answer my desperate message. My daughter is suffering so

> much.

>

> Silvia

[Guest guest]

Well, grilling is easy. My husband loves to grill and I just have him throw me

on some chicken or a turkey burger. You can grill up veggies and they taste

great! Add a nice salad and a good carb, and you're all set! Almost every

restaurant has something healthy on the menu. Everywhere I go, I can usually

find a grilled chicken salad and get the dressing on the side. Get a protein, a

veggie, and maybe a baked potato or something. Ask for what you want: no butter,

dressing on the side. Most places are more than willing to give you what you

want.

Maybe make a list of what you're REALLY craving during the week. On Saturday

or Sunday, have that food with no guilt. Get your husband on your team! You can

do it. Just plan ahead and make that commitment!

lovoya <no_reply > wrote:

I have started the BFL program too many times to mention. My problem

is basically " food " . During the week, I have my routine in place and

I follow it to a T. However, when the weekend comes, all hell breaks

loose. This summer has been exceptional bad. My husband grills,

every weekend, we have been going out to eat every weekend, so forth

and so on. I love food and can't help indulging every weekend only to

feel Monday blues when all of my hard work during the week has gone up

in smoke. HELP!!!!!

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

Want to be your own boss? Learn how on Small Business.

[Guest guest]

If you can't limit it to one day, you can make the weekend spree work

for you. Here are some ideas:

1) Make better bad choices. Have your husband grill you some lean

protein - chicken, lean ground beef, kabobs etc. Choose less deadly

restaurant meals - salads, chicken fajitas, egg white omelets.

2) If you do eat something insane, minimize the portion - a dozen

potato chips instead of half a pound of potato chips, an ice cream

cone instead of an ice cream quart. This is easier if you eat most of

your free food away from home. Then it isn't around the house to tempt

you.

3) If you want to have some fun eating on both weekend days, you have

a couple of options. You could do two free meals. Maybe one is a

Saturday backyard barbecue and one is a no-holds-barred restaurant

meal on Sunday. Some people make free day a 24 hour period that starts

at 6:00pm on Saturday and ends at 6:00pm on Sunday. Now, that's

obviously dangerous and not ideal, but it's better than going hog wild

all weekend. At least you eat clean all day Saturday and knock off the

munchy food hours before bedtime on Sunday.

Come up with a plan that's going to work for you and make adjustments

as time goes on. Maybe at first you eat crazy all weekend but try to

reign in the portions a little. Then in a couple of weeks you start

the bad eating a little later or stop it a little sooner. Maybe

eventually, you get it down to one controlled free day, or two planned

free meals. Maybe not. Even if you eat healthy five days a week and

eat junk two days a week, that's a whole lot better than what most

people do, which is eat junk all day every day. :-)

You can look at it like you have to do everything right or you've

failed and may as well quit, or you can look at the whole thing as a

progression, something with a learning curve. No matter how good or

bad your current approach, if you keep going, you'll get better at it.

On 7/10/06, lovoya <no_reply > wrote:

> I have started the BFL program too many times to mention. My problem

> is basically " food " . During the week, I have my routine in place and

> I follow it to a T. However, when the weekend comes, all hell breaks

> loose. This summer has been exceptional bad. My husband grills,

> every weekend, we have been going out to eat every weekend, so forth

> and so on. I love food and can't help indulging every weekend only to

> feel Monday blues when all of my hard work during the week has gone up

> in smoke. HELP!!!!!

[Guest guest]

I grill every night, that shouldn't be a problem. I grill chicken breast, have

some brown rice

and a salad. I'll grill a small steak, bake a small potato have some salad. A

pork chop, make

some whole wheat couscous and grill some asparagus. You have to make it a way

of life and make

better choices. We went out to lunch in St. Helena this weekend. I had a

grilled ahi salad and a

piece of the excellent bread without butter. It didn't need the butter.

On Mon, 10 Jul 2006 18:15:25 -0000

lovoya <no_reply > wrote:

> I have started the BFL program too many times to mention. My problem

> is basically " food " . During the week, I have my routine in place and

> I follow it to a T. However, when the weekend comes, all hell breaks

> loose. This summer has been exceptional bad. My husband grills,

> every weekend, we have been going out to eat every weekend, so forth

> and so on. I love food and can't help indulging every weekend only to

> feel Monday blues when all of my hard work during the week has gone up

> in smoke. HELP!!!!!

>

>

>

[Guest guest]

I TOTES agree! Believe it or not the tastebuds change...and its a

party in the mouth when food is SO ripe, or such a high quality

while still being guilt-free nutritious. Stay on the eating path

that keeps you craving PURE food.

It also helps to scout the restaurants food menu online before going!

Checkout Outback Steakhouse--they have a great grilled filet/chicken

and baked Sweet potato. Then checkout the caloric content of the

dessert! 2,200 calories average! You wont want it after KNOWING

about it.

good luck

> > I have started the BFL program too many times to mention. My

problem

> > is basically " food " . During the week, I have my routine in

place and

> > I follow it to a T. However, when the weekend comes, all hell

breaks

> > loose. This summer has been exceptional bad. My husband

grills,

> > every weekend, we have been going out to eat every weekend, so

forth

> > and so on. I love food and can't help indulging every weekend

only to

> > feel Monday blues when all of my hard work during the week has

gone up

> > in smoke. HELP!!!!!

> >

> >

> >

>

[Guest guest]

Hi Jane,

I sympathise, you deserve so much, much more. I chose not to waste

precious energy arguing with my GP any longer and took things into

my own hands and I've managing my way through taking Armour, but

that's not for everyone. There are so many kind and supportive

people here and loads of information that will help.

Don't give up!

Helen x

>

> I was diagnosed with hypothyroidism last year. (TSH 67... T4 less

than

> 3)(Hashimotos - TPOAb level = 1243)... i have been in the " normal

range "

> (god i HATE that term) since December. I still feel rubbish and

finally got

> an audience with an endocrinologist (NHS) 4 weeks ago. He

eventually read my

> notes (was clearly seeing me as a favour to my doctor to shut me

up) he

> eventually realised that maybe I was symptomatic (despite doctor

clearly

> thinking im nuts) and said he wanted blood tests in 4 weeks then

if there

> was no improvement in my condition/ symptoms he would prescribe

T3. Had

> blood tests done and phoned him today.... cant speak to me, only

via

> secretary... " bloods are normal nothing can be done " ....

> arrrrrrgggggggggghhhhhhhhhhhh.... i have bad water retention in my

legs and

> can barely walk some days... still have the hypo foggy brain where

> everything has to be written down... pain in my legs and feet...

cold... etc

> etc .... but " no ... all is fine... go away... in yer head " ...

what are we

> supposed to do?... I cant go on like this.... I have to drag

myself around

> most days... I don't have to put and shut up do I?.... I have

fought all

> along but the fight is slowly going out of me.... what do I

do? ... I feel

> so desperate. Be great to get some advice on what I can do now.

>

[Guest guest]

Hi Jane

I am so pleased that you have found this forum and I hope you get all the help and support you so deserve.

Can you get your last thyroid function test results from your GP (your endocrinologist will have passed these on) and post them here together with the reference range for each test, and then we can get a better picture of what is happening. L-thyroxine alone is an INACTIVE hormone and it has to convert to the ACTIVE hormone triiodothyronine (T3). If you are not converting, you will continue to get all the symptoms you are writing about here, including more and the only way to go to get your health returned is to add either synthetic T3 or natural Armour Thyroid which contains all the thyroid hormones your body requires. Short term memory and brain fog are caused through a lack of T3. Doctors don't know this - they are not taught this. Your brain CANNOT function without T3.

Doctors are reluctant to go down the combination therapy road, because the British thyroid Association (who should actually be reported to the GMC) are giving out both misleading and incorrect information to medical practitioners and these practitioners follow everything the BTA state - actually, they are too scared to do otherwise, because if they DARE to go outside the BTA (not NHS) diagnosing and treatment protocol, they are reported to the General Medical Council for being a danger to their patients. It is the BTA who are a detriment to NHS doctors and patients alike. However, there is more and more evidence appearing - albeit a trickle - to prove that the BTA are wrong, and measures are taking place to make them change their protocols.

You will learn more about this on this forum, as mainly, we are a campaigning group to get things changed, and get them changed we will.

Have you asked your doctor to give you a trial of diuretics to get rid of the excess fluid you are carrying. This is cruel not to allow you this. I take 50 mgs Co-Amizolide and my doctor prescribes this for me as I retain a lot of fluid - seems I always have.

It may be a fact, sadly, that they only way you are going to regain your health is to go down the self treating road, and this is quite appalling. Unfortunately, if you are not being cared for properly in the NHS, there is no option. We can help you greatly if this is a road you choose.

You will learn that there are many conditions that stop your thyroxine from working, but take everything slowly. Take one step at a time and please don't let all the information here overwhelm you, which it so easily could. You will get loads of help here. The conditions that stop your thyroid hormone replacement from working are :

1) You have low adrenal reserve. You can read more about this in our FILES or on our website www.tpa-uk.org.uk and you can also do the Adrenal Questionnaire in our files to see how you score.

2) You have a low ferritin level (stored iron). Ask your GP to test this specifically. It should be around 70 to 90 in a reference range of 20 to 200. If it is very low, your doctor needs to prescribe some form of elemental iron, but if you do need iron, never taken it at the same time as your L-thyroxine/

3) You have Candida Albicans - this is a yeast overgrowth that is bunging up your guts. Take a glass of cold water to bed with you tonight. First thing when you wake, before having a drink or cleaning your teeth, spit into the top of the glass. If, after a while, you see thin thready strands going from your spit down towards the bottom of the glass, this is an indication you have candida. If, on the other hand, the spit disappears, you don't have candida. You can read more about this in our FILES on the forum and you can also do the Candida Questionnaire.

4). You have mercury poisoning. Again, read about the mercury/thyroid connection in our website. Go to the right hand column and there is an article right at the top of the list.

5) You have lows Vitamin D. Get your GP to test this for you.

As I said, take one step at a time and ask as many questions as you wish.

Luv - Sheila

I was diagnosed with hypothyroidism last year. (TSH 67... T4 less than 3)(Hashimotos – TPOAb level = 1243)... i have been in the “normal range” (god i HATE that term) since December. I still feel rubbish and finally got an audience with an endocrinologist (NHS) 4 weeks ago. He eventually read my notes (was clearly seeing me as a favour to my doctor to shut me up) he eventually realised that maybe I was symptomatic (despite doctor clearly thinking im nuts) and said he wanted blood tests in 4 weeks then if there was no improvement in my condition/ symptoms he would prescribe T3. Had blood tests done and phoned him today.... cant speak to me, only via secretary... “bloods are normal nothing can be done” .... arrrrrrgggggggggghhhhhhhhhhhh.... i have bad water retention in my legs and can barely walk some days... still have the hypo foggy brain where everything has to be written down... pain in my legs and feet... cold... etc etc .... but “no ... all is fine... go away... in yer head” ... what are we supposed to do?... I cant go on like this.... I have to drag myself around most days... I don’t have to put and shut up do I?.... I have fought all along but the fight is slowly going out of me.... what do I do? ... I feel so desperate. Be great to get some advice on what I can do now.

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1403 - Release Date: 29/04/2008 07:26

[Guest guest]

MODERATED TO REMOVE MESSAGES PREVIOUSLY READ. PLEASE WILL YOU JUST LEAVE PART OF

THE MESSAGE YOU ARE RESPONDING TO AND REMOVE EVERYTHING ELSE. Luv - Sheila

___________________

TSH was 0.4 and T4 was 18... this was on Tuesday... TSH is very low I

know.... but i still have little energy etc.... i was prescribed

water tablets.... 5mg bendroflumethiazide.... lost 1 stone in 48

hours... still have fluid retention especially round my middle...

body shape changed completely.... legs have marks about 3/4 inch deep

by end of day.... doc reckons i imagine it all!!! Had cortisol levels

checked in Feb (i think!!) level was 583 - ref range was something

around 100-600 - so " in normal range " ... not even considered... even

though i suggested that high cortisol levels can affect conversion...

makes me a nutter... looking for problems... suggested T3 was

told " you're not american.... you live in britain " ... have me down as

total kook who trawls internet looking for things that can be

wrong!!!!... just want what i've got treated properly!!!!

>

> Hi Jane

>

> I am so pleased that you have found this forum and I hope you get

all the help and support you so deserve.

>

> Can you get your last thyroid function test results from your GP

(your endocrinologist will have passed these on) and post them here

together with the reference range for each test, and then we can get

a better picture of what is happening.

[Guest guest]

blood tests on tuesday say TSH 0.4 and T4 18......have asked for T3 but

doc told me " you not american... live in britain " endo promised me T3

but has retracted this yesterday.... cortisol levels were 584 or so in

february .... suggested this quite high (ref range something like 100-

600) but told " in normal range so nothing to do with anything " which is

when i threw in that i had read that high cortisol can interfere with

conversion of T4 to T3 and was duly slapped down..... they have me down

as a loon who makes things up... even water retention ... despite

losing a stone in 48 hrs when given water tablets (5mg

bendrofluromethiazide) ... still have lots of fluid... affects me

alot... I have a degree in molecular biology... so i understand these

things and when a doc thinks that thyroid peroxidase antibodies and T3

are the same thing I WILL point out that they are wrong!!!! Please

forgive my seeming ignorance on reference ranges... surgery will NOT

give me copies of blood tests.... just in case i try to interpret them

i assume!!! I'm not a loon... I dont want to be ill... I just want what

I've got treated properly... they clearly are not willing to help!!!!

[Guest guest]

Please

> forgive my seeming ignorance on reference ranges... surgery will NOT

> give me copies of blood tests.... just in case i try to interpret

them

> i assume!!! I'm not a loon... I dont want to be ill... I just want

what

> I've got treated properly... they clearly are not willing to help!!!!

>

Hi Jane, I do believe you are entitled to your results, but as you say,

doctors often worry in case you misinterpret them. Some doctors (and I

stress SOME) think they are just one step below God, and

patients......they can't possibly be as, or even MORE, intelligent than

them !!! Believe me I have met many docs whose number of brain cells

are in question.

Anyway I rang the results line at my doc's and the nurse who answered

told me that only on one result did I need to see the doctor. Then I

asked if she would give me a copy of the results and she obliged. I

collected them 2 hours later.

Perhaps the answer is to ask for a copy when you ring the results line.

Good luck, be insistant. possibly even speak to the practice manager.

Wyn

[Guest guest]

HI Jane

With a high Free T4 - this could mean it is not converting into the active hormone T3. You need to find out whether this is true and you can only really tell by getting your Free T3 tested. If you local laboratory refuses to do this test, you can get it done through NPTech Services. Go to our FILES from the Home Page of the forum and then scroll down the list until you see NPTech Services. You can see there the tests they do and the prices they charge. If your Free T3 comes back very low, then you definitely need to supplement using synthetic T3 or Armour. Are you not taking any diuretic at the moment - if not, have a word with your doctor, and never mind whether HE reckons you are imagining it or not - if your legs are as you describe, one wonders how he can even say such a thing.

Your cortisol and DHEA needs to be measured at four specific times during the day to check against the 'normal' charts as to where your levels should be. You can get the 24 hour salivary adrenal profile (again through NPTech) and you spit into a testube at 8,00a.m. 12 noon, 4.00p.m. and again at midnight and then send off these samples to NPTech. They will let you know the result within a week and then you can start on boosting your adrenals. The test at the hospital is insufficient and really only tests to see whether you have 's disease - not low adrenal reserve. T3 is used to treat hypothyroid patients throughout the world - always has been. Your doctor should do a little research on the Internet as his education is sadly lacking. If your doctor refuses to do the work - there is nothing else left but to find these things out for yourself, and get the necessary tests yourself. We should be able to reclaim the money we have spent on tests the NHS refuse to do.

luv - Sheila

___________________TSH was 0.4 and T4 was 18... this was on Tuesday... TSH is very low I know.... but i still have little energy etc.... i was prescribed water tablets.... 5mg bendroflumethiazide.... lost 1 stone in 48 hours... still have fluid retention especially round my middle... body shape changed completely.... legs have marks about 3/4 inch deep by end of day.... doc reckons i imagine it all!!! Had cortisol levels checked in Feb (i think!!) level was 583 - ref range was something around 100-600 - so "in normal range"... not even considered... even though i suggested that high cortisol levels can affect conversion... makes me a nutter... looking for problems... suggested T3 was told "you're not american.... you live in britain"... have me down as total kook who trawls internet looking for things that can be wrong!!!!... just want what i've got treated properly!!!!---

..

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[Guest guest]

still taking diuretic.... daren't stop.... tried... gained 10lb in 24

hours.... not really obsessed with my weight... just a good indicator

for me.... had lost 4.5 stone before i became ill.... looking back can

see when i had started with this as weight loss stopped... was in

slimming world magazine!!!... then gained 5 stone in 3 months ...

despite continuing to follow diet plan... KNOW how my body responds

weight wise.... so i use this as one indicator for whether treatment

working (apart from the symptoms of feeling totally awful etc!)

[Guest guest]

Hi Jane

Your surgery cannot refuse to let you have your blood test results. These are yours by law.

Everyone has the right to have a copy their medical records under the Data Protection Act 1998. Click on the links below, and then telephone your surgery and tell them you will be calling in to get copies of your last blood results.

Luv - Sheila

http://www.bbc.co.uk/dna/actionnetwork/A1181657

By BBC Action Network team

1. Can I have a copy of my medical records? 2. How do I access my medical records? 3. What if I am denied access? 4. Advice from an expert

-- In thyroid treatment , "crosbie_jane" <jane@...> wrote:Please > forgive my seeming ignorance on reference ranges... surgery will NOT > give me copies of blood tests.... just in case i try to interpret them > i assume!!! I'm not a loon... I dont want to be ill... I just want what > I've got treated properly... they clearly are not willing to help!!!!

..

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[Guest guest]

Hi Jane

..... but " no ... all is fine... go away... in yer head " ...

what are we > supposed to do?... I cant go on like this.... I have to

drag myself around > most days... I don't have to put and shut up do

I?.... I have fought all > along but the fight is slowly going out of

me.... what do I do? ... I feel > so desperate.

I feel the same way. My doctor says it is my age. The endo I have

just seen discharged me because my bloods were 'normal' and despite

my NPTech results of T3 under range. He did not really ask me any

questions on how I felt - just suggested I consider HRT even though

he said my oestrogen was normal and I am using natural progesterone

cream. I have sent him another letter but when I have bad days, I

sometimes think that I don't have the mental or physical strength to

go on fighting. I drag my legs up the stairs to work and sit half

asleep until home time. I feel as though I have spent the past few

years in a daze. I KNOW it is not just my age, I know my own body.

But..........we cannot let the arrogant, up their own exhaust

b*****ds win. We have to be strong, we have to go on sending

letters, we have to keep bugging the doctors. The bottom line is why

do we have to pay for medical help and medication because they are

not doing their job properly - we all pay into the NHS - they work

for us. They are obviously 'not fit for the purpose'. If they were

garage mechanics of builders we could sue for bad work. How dare

they treat us like idiot hypocondriacs - why cannot they work WITH us

to make us better. I am spending money I cannot afford in an effort

to make myseslf well. I want a refund from the NHS !!!!!!

LONG LIVE THE TPA.UK

Sorry for soap-boxing.....

B

[Guest guest]

Hi , I agree with all that you have said, we are all trying to survive this illnessthe best we can. I have spent a lot of money as all of us have. about 15/18 hundredpounds so far. this is for medicines travelling to doctors and vitamins and supplements,.a computer to get myself informed . I could go on but you all get the message.their is no cure, but we can all lead a useful life if only doctors were better educatedand allow the patent more time to explore our health. WE WILL get there in the end.lov angel.

Sent from .

A Smarter Email.

[Guest guest]

have just bulldozed myself another appointment with endo.... who has

just given me a prescription for T3.... actual words as he handed it

over?..... " I admire your persistance and perseverance " .... cheeky so

and so!!!!.... does that not really sum it up?... only those who find

the strength to go on ...and on..... and on.... and on.... get what

they should have had in the first instance!... so all is not lost.... i

got his secretary on side... that certainly seemed to help!!!!!! ....

power to the roidies... keep going!!!!!

[Guest guest]

also... just to be sure... he has cut my T4 from 200 to 100 and added

20 of T3 a day (in 2 x 10 doses)... does this sound about right?

[Guest guest]

Sounds about right to me.

Lilian

also... just to be sure... he has cut my T4 from 200 to 100 and added 20 of T3 a day (in 2 x 10 doses)... does this sound about right?------------------------------------Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication.

[Guest guest]

Brilliant Jane - onward and upwards! A good lesson for us all - keep on and oln and on and on and keep goiong on and on and on until you get a result. Well done.

Luv - Sheila

have just bulldozed myself another appointment with endo.... who has just given me a prescription for T3.... actual words as he handed it over?..... "I admire your persistance and perseverance" .... cheeky so and so!!!!.... does that not really sum it up?... only those who find the strength to go on ...and on..... and on.... and on.... get what they should have had in the first instance!... so all is not lost.... i got his secretary on side... that certainly seemed to help!!!!!! .... power to the roidies... keep going!!!!!

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.7/1409 - Release Date: 01/05/2008 08:39

[Guest guest]

Well, it depends. If you have not been converting to T3, 20 mcgs daily might be a little bit much to start off on. It might be OK, but if this was me, to be sure, I would start using 10mcgs and increase it slowly if you do not get any adverse effects. T3 is the active hormone, and if your body hasn't been used to it for a while, it might respond in a not so pleasant way if it gets too much all at once.

Did he tell you also that any products with T3 should be taken in a split dose. This is because T3 has such a short half life, and after 6 hours or so, it leaves your body - so it is best to keep it "topped up". Also, did he tell you that it has been found that taking your thyroid hormone replacement at night works better for some patients and also gives them a better nights sleep.

luv - Sheila

also... just to be sure... he has cut my T4 from 200 to 100 and added 20 of T3 a day (in 2 x 10 doses)... does this sound about right?

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.7/1409 - Release Date: 01/05/2008 08:39

[Guest guest]

cant tell you how excited i am... been buzzing all day... just hope it

works for me now!!!!!! thanks for all your support!

[Guest guest]

....gently, gently, catchee munkie!

Luv - Sheila

cant tell you how excited i am... been buzzing all day... just hope it works for me now!!!!!! thanks for all your support!

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.7/1409 - Release Date: 01/05/2008 08:39

[Guest guest]

Hi Jane,

If your GP won’t cooperate and give you a referral to Dr. Skinner then

make yourself an appointment to see dr, Peatfield. Either will listen to you

and treat your symptoms.

Subject:

desperate

“bloods are normal

nothing can be done” .... arrrrrrgggggggggghhhhhhhhhhhh.... i have bad

water retention in my legs and can barely walk some days... still have the hypo

foggy brain where everything has to be written down... pain in my legs and

feet... cold... etc etc .... but “no ... all is fine... go away... in yer

head” ... what are we supposed to do?... I cant go on like this.... I

have to drag myself around most days... I don’t have to put and shut up

do I?.... I have fought all along but the fight is slowly going out of me....

what do I do? ... I feel so desperate. Be great to get some advice on

what I can do now.

[Guest guest]

kathryn i was in a similar position as you just a few weeks ago. i was ready to

end my life. i got tested for XMRV and started AZT. i am 25% improved already,

believe it or not.

 

have you been tested?

From: Kathry Froese <kathryn@...>

Subject: Desperate

Received: Monday, April 12, 2010, 1:40 PM

 

I have had Chronic Fatigue Syndrome for 20 years, becoming very

debilitated over time, mostly housebound and in recliner or bed.

Hypothyroid for 10 years. Diagnosed with 's Disease (ACTH Stim

test - the gold standard) two years ago but unlike most people with

's, my blood pressure and heart rate tends to be high. This does

not make sense to any of my endos or doctors but much like CFS, they

simply ignore it because they don't have any answers. My illness has

worsened after starting Hydrocortisone (steroids), the treatment for

's.

I have had nausea for almost two weeks accompanied by tremors, sometimes

severe. I went to Emergency by ambulance a few days ago - waited on

stretcher for almost 8 hours before being seen by a doctor probably

because none of my vitals looked alarming. I was nauseous and shaking

but not vomiting. Retching but not vomiting. With severe tremors.

I begged for a saline iv to avoid dehydration without anti-nausea meds

because all of them make me more nauseous. Without fail. But was told

I had to see the doctor before I could get the iv. Finally after 8

hours was given 60 mg. Hydrocortisone by iv drip instead of injection

because when I take Hydrocortisone in pills, my blood pressure and heart

rate goes up so I guess they didn't want to risk an injection. After the

drip, my blood pressure went down further than it's been in many years -

top number was 112 - I did write it down in the ER but too weak to find

where it is right now. (Blood pressure and heart rate is supposed to go

up in 's when getting HC, low blood pressure is one of the major

symptoms of 's) and my heart rate went from over 100 to low 70's.

That day I had a total of 105 mg. Hydrocortisone and felt better

immediately after the drip but the next day I was back to where I'd

begun

None of my doctors know how to treat me. If I'd been vomiting, I would

have been seen immediately. For some reason, I've always had a hard

time vomiting - I have writhed on the floor in agony with nausea but

rarely vomit. There was little or nothing in my stomach to bring up. I

have been back home for 4 days and the nausea is relentless. I waken at

night with highish blood pressure and heart rate of over of 100 on 40

mg. HC. I am forcing myself to eat - have to eat if taking cortisol,

but the nausea is non-relenting. I am too weak to go see a doctor and

most definitely cannot go to Emergency again. I couldn't lie down flat

because of the nausea but couldn't stay in bed because of severe lower

back pain. CFS makes me very weak so I basically had no place to rest.

And they don't know how to treat me because my symptoms don't follow the

rules.

I am too weak to remain upright for more than a few minutes. I have a

lot of bruises - a sign of high cortisol. I shake a lot.

I am desperate; can anyone help? I was on 30 mg. Hydrocortisone for

several months after being on 20 mg. for almost 2 years but have gone up

to 40-45 for 5 days. It is much as I can tolerate. There must be a CFS

connection here???

I have no stress tolerance; I can't go on like this much longer. If

anyone can help. . . .