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Caroline,

Only 6 more weeks - so glad to hear that is doing well -

you're getting there now!

Kerri

's mom

--- In Plagiocephaly , " masetane " <masetane@a...>

wrote:

My son started treatment at 5 months and now at 6

> months he is half way there. They are telling me 6 more weeks of

> treatment. Check into Cranial Tech or StarBand

> Caroline

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  • 1 year later...

Thanks . Caroline had a great day. Her pneumonia/cough is still pretty

bad, but she's still her happy chipper self! She got a new Barbie Bicycle

for her birthday so she's been riding to " school " and " grandma's house " all

day! I can't wait for winter to be over so she can actually take the bike

outside instead of through the kitchen!!

Alia and Caroline, age 3, poly and uveitis

Caroline

Happy Birthday Day to Caroline!! I hope today brought a pain free and

wonderful day!

Lots of Love

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Hi Alia,

I am so glad to hear that Caroline is doing a little better and that

she was able to enjoy her birthday party. She has had such a

difficult winter. I am praying that nothing gets worse while you are

in the process of changing meds.

I bet Caroline will be a great big sister! My kids are almost 3 1/2

years apart and I just loved that age difference. My son was able to

take a very active part of welcoming Aundrea home. They have always

enjoyed a good sibling bond.

thought that we brought Aundrea home to him as a present! :-)

God Bless,

(drea 9 systemic)

> Thanks . Caroline had a great day. Her pneumonia/cough is still

pretty

> bad, but she's still her happy chipper self! She got a new Barbie

Bicycle

> for her birthday so she's been riding to " school " and " grandma's

house " all

> day! I can't wait for winter to be over so she can actually take the

bike

> outside instead of through the kitchen!!

>

> Alia and Caroline, age 3, poly and uveitis

>

> Caroline

>

>

> Happy Birthday Day to Caroline!! I hope today brought a pain free

and

> wonderful day!

>

> Lots of Love

>

>

>

>

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  • 1 year later...
Guest guest

Alia! Soft hugs and plentiful prayers are coming your way for Miss C. Maybe

just a bit too much fun this weekend. The young adults often discuss the post

conference flare so hope all stay away from that.....

Hang tight , Hang tough

Donna

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Oh no! Hearing that was enough to bring me out of my " lurking " mode! I am

so, so sorry to hear of her latest health hurdle! That really stinks. She,

you, and your family are all in out thoughts. We will be hoping she gets

through this as quickly and smoothly as possible! Please keep us updated on

her progress (as I'm sure you will)!

I apologize to everyone else. I've had some re-occurring back pain that

I've been going through the " process " of finding out what is the

cause/cure. I'm currently in PT and am having another laparoscopy (had one

in 2000) b/c I think my endometriosis has reared its ugly head again.

ANYWAY, with all that and the girls' birthdays (Sophie turned 5 on the 13th

and Charlie will be one on the 25th), I've been lurking through the posts

these past couple of months.

Quickly, I have all the " newbies " in my thoughts. I hate to read of the

newly diagnosed. However, I'm glad they find their way to this group.

Though I lurk, I still feel supported through the many stories that are so

incredibly similar to our own! The " veterans " are there, as well:

Caroline, Hannah, , Rob, and the many others. I constantly hope a

stretch of quiet, inactive peace fills your homes! On a personal note,

Sophie is doing well. Went to the Rheumy last week. She remains quiet.

Her liver counts went up when we tried to bump up her mtx dosage. We've

gone back down a bit and her eyes are still quiet. I'm not sure that will

be the case in 6 weeks when we return to her ophthalmologist. If she flares

again, we will be making a trip to Boston and her rheumy want to try a

switch to Enbrel. So, we wait...

Again, Alia... I can't tell you how sorry I am to hear of that sweet

daughter of yours having to fight yet another illness! That girl of yours

is so dang tough! To the rest of you, I hope this message finds you and

your families well. I think of you all often and constantly read your posts

for support and inspiration. Thanks for being a dependable source for

both!!!

Take care,

Weber :)

Professional Mom to:

Sophie - NOW 5!!!!! - pauci/panuveitis - JRA super fighter

Charlie - the big ONE in 7 days!!!! - it's a good thing she's so cute... I'd

have given her back long ago if she wasn't ;-)

On 7/18/06, Alia Pranke <Alia.Pranke@...> wrote:

>

> Hey everyone -

>

> Please say an extra prayer for Miss C tonight. We just got back from

> the doctor and she has PNEMONIA!!!

>

> We are starting her on an anti-biotic treatment and we'll go back in 5

> days to re check her. I assume no Remicade today, but we haven't been

> able to get a hold of her rheumy..

>

> Alia and Caroline, age 4, poly and uveitis

>

>

>

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oh Dear Lord Alia,

What more?

Sending prayers and hugs your way.

Jo and family

PS: checked out your website, but couldn't see pics of car magnets?

Hey everyone -

> Please say an extra prayer for Miss C tonight. We just got back from

> the doctor and she has PNEMONIA!!!

> We are starting her on an anti-biotic treatment and we'll go back in

5 > days to re check her. I assume no Remicade today, but we haven't

been > able to get a hold of her rheumy..

> > Alia and Caroline, age 4, poly and uveitis

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Alia:

Sending happy thoughts & hugs your way!

Alia Pranke <Alia.Pranke@...> wrote:

Hey everyone -

Please say an extra prayer for Miss C tonight. We just got back from

the doctor and she has PNEMONIA!!!

We are starting her on an anti-biotic treatment and we'll go back in 5

days to re check her. I assume no Remicade today, but we haven't been

able to get a hold of her rheumy..

Alia and Caroline, age 4, poly and uveitis

Beth Yohnk

Happy Thoughts..Be Well

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Hey Jo - Yes I agree. Caroline is definitely one of those kids that as an extra

hard time with

things. If it's not the arthritis or the uveitis - it's those nasty infections!

I worry about what

this means for her Remicade. We have only done 4 Remicade treatments, but

pnemonia is

not a good sign for her. Especially considering it is JULY!! I left a message

with her nurse,

but she told me that she would not be happy!!

Thanks for thinking of us. Now that I am back I will send off some magnets and

bracelets

to you down under!!

Alia and Caroline, age 4, poly and uveitis

> Hey everyone -

> > Please say an extra prayer for Miss C tonight. We just got back from

> > the doctor and she has PNEMONIA!!!

> > We are starting her on an anti-biotic treatment and we'll go back in

> 5 > days to re check her. I assume no Remicade today, but we haven't

> been > able to get a hold of her rheumy..

> > > Alia and Caroline, age 4, poly and uveitis

>

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Tracey -

Happy birthday Sopie and Charlie!!! Where does the time go?? I am so glad to

hear that

Sophie's eye's are doing well. I am sorry to hear she can't tolerate more MTX,

but at least

it's holding it's own for now. If you go to MERSI you will be so impressed! Dr.

is just

amazing.

Thanks for the warm thoughts - they are much appreciated!

Alia and Caroline, age 4, poly and uveitis

Evan Guy, age 1, aka " I like to move it, move it "

> >

> > Hey everyone -

> >

> > Please say an extra prayer for Miss C tonight. We just got back from

> > the doctor and she has PNEMONIA!!!

> >

> > We are starting her on an anti-biotic treatment and we'll go back in 5

> > days to re check her. I assume no Remicade today, but we haven't been

> > able to get a hold of her rheumy..

> >

> > Alia and Caroline, age 4, poly and uveitis

> >

> >

> >

>

>

>

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Guest guest

Thanks Robbin!!

Alia and Caroline, age 4, poly and uveitis

>

> Alia,

> I hope Caroline feels better soon. When did she get sick? I was praying

> That wouldn't get sick going from the cold AC to the HEAT outside.

> Then when she got in that pool. I said be sure to cover yourself up before

> going back inside. My Son got that because I would carry him inside and

outside

> cold to hot. Tell Caroline we said Hi

> Robbin

>

>

>

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Guest guest

Alia,

I get on when I can here days but came across this new thread tonite.

I hope and pray after a few days Caroline is much better.

delt with this at Christmas time and By late Jan early Feb had

developed a real,CDC reported case of the flu.

was given antibiotics with the thought that it could be viral.Sure

enough it was and the cough lasted and lasted and lasted some more.

Keep us posted on how Miss C is.

Love and hugs

Becki and 7 systemic

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  • 2 months later...

Caroline, I've had a few members ask if we can do something for you (financially or otherwise, i.e. food, herbs, etc... I think it is a wonderful idea. I asked you earlier and you said prayers... which I'm sure you're getting... but can we help you out with the electric bill?? We all either have been there or maybe someday we will be there ourselves... You can either post your mailing addy or if you have paypal, or if you prefer I can handle the funds and send you one check... I'm writing this on the group as I'm sure from the past there are others who are probably thinking the same thing but haven't said anything yet. Let me know Caroline... we are family here. Your "group mom" Suzi

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I honestly don't know what to say....I am truly blessed to have

people like all of you in my life.

My home mailing address is:

Caroline Hanifen

1217 Belair Street E

Lehigh Acres, FL 33936

I don't expect anything...because it is not my way. A note of

encouragement that things will be alright is always enough for me to

keep going on most days.

You all are very special to offer. I am in tears here. It has just

been such a rough few months...and the last two weeks have been

unbelievable. I don't know if I told you all...but my brother in law

was killed in an accident the monday before last. It has been a very

emotional two weeks...with everything else going on it has been

difficult. This was my husband's last brother. My son not only lost

his father to a terrible accident but his two uncles as well. My

mother in law has lost all of her children...which no mother should

ever have to endure. It has been a terrible emotional roller coaster

we have been on. Plus my mother in law has had two strokes since

then...and believe it or not...I'm the closest person to her!!

Anyway...I do truly thank all of you...you guys are so incredible!!

Sincerely blessed,

Caroline

>Caroline,

>I've had a few members ask if we can do something for you

>(financially or otherwise, i.e. food, herbs, etc...

>I think it is a wonderful idea. I asked you earlier and you said

>prayers... which I'm sure you're getting... but can we help you out

>with the electric bill?? We all either have been there or maybe

>someday we will be there ourselves...

>You can either post your mailing addy or if you have paypal, or if

>you prefer I can handle the funds and send you one check...

>

>I'm writing this on the group as I'm sure from the past there are

>others who are probably thinking the same thing but haven't said anything yet.

>

>Let me know Caroline... we are family here.

>

>Your " group mom "

>Suzi

--

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  • 1 year later...
Guest guest

Hi Caroline, had you had blood tests before you tried the T3? I was diagnosed with fibromyalgia and given amitriptylene, which really helps me - in fact Ive been trying to cut it down since being on levothyroxine and my pains have come back! Im not sure how it works but it relaxes muscles and really does make a massive difference to me. If you havent tried it I would suggest doing so as the difference to me is being fairly normal or being in lots of pain!

Some studies on fibromyalgia have said its hypoT and T3 works but there are others that say it might be due to lack of human growth factor and other things as well - Dr Lowe is good for fibromyalgia studies.

Gill

Gill

Hi Shelia

Last year around June I think I was doing terrific, i was on 100mg t3 and 20mg cortef. I was able to exercise daily, gardening, and able to write which is my passion. I was thinking about going back to work, but was not 100% well. I went up to 150mg t3 (over time) and went a bit worse but not hyper. My temps have never been stable and I spoke to dr P, who told me to come of all t3 and go up to 40mg cortef. This unfortunately did not help, temps still all over the place, can vary a degree every day and yes I've tried different themomeeters.

At this stage I decided to see if I could get an nhs diagnosis so booked an appointment at huddersfield. It was a diaster my letters kept getting lost and the surgery told me to ring up every day, my GP put that is was a referral for fibromyalgia so Dr B refused to see me. Back to GP new referral and eventually he saw me. The minuite we walked in he was moaning about the fact that i had been chasing the letters and refused to listen to symptoms only wanted blood tests. Results were

T4 14.7 (8-21)

T3 4.8 (2.5-6)

TSH 1.4 (.2-4)

Ferretin 25 (15-230)

Dr B said I was totally normal and he would not treat me including ferritin.

I started on iron and t3 straight away and have got up to 60mg T3 and 100mg iron one day 200mg the next.

Unfortunatley I have not been able to get myself recovering this time and neck, shoulder and back pain has been terrible as well as headaches. I am spending most days going from my bed to the bath and just praying the day will be over. I have noticed that my hands are no longer as cold so hopefully I am on the road to recovery.

If you have any advice, please let me know as I have been at my wits end.

Regards

Carolinesheilaturner <sheilaturnertpa-uk (DOT) org.uk> wrote:

I am sorry to hear you are feeling so rotten since stopping your T3. Can you remind me why you did that?

Luv - Sheila

..

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.. __,_._

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I am one who says that Fibromyalgia is another name for hypothyroidism. This is the name doctors call this disease when they don't know how to diagnose or treat hypothyroidism. T3 is the drug of choice for people who suffer CFS, ME, Fibromyalgia - and is the active hormone all hypothyroids need. Gill, if you went on to Armour, I bet you your pains would disappear.

You've read the papers - you should perhaps try the medicine.

luv - Sheila

Hi Caroline, had you had blood tests before you tried the T3? I was diagnosed with fibromyalgia and given amitriptylene, which really helps me - in fact Ive been trying to cut it down since being on levothyroxine and my pains have come back! Im not sure how it works but it relaxes muscles and really does make a massive difference to me. If you havent tried it I would suggest doing so as the difference to me is being fairly normal or being in lots of pain!

Some studies on fibromyalgia have said its hypoT and T3 works but there are others that say it might be due to lack of human growth factor and other things as well - Dr Lowe is good for fibromyalgia studies.

Gill

Gill

Hi Shelia

Last year around June I think I was doing terrific, i was on 100mg t3 and 20mg cortef. I was able to exercise daily, gardening, and able to write which is my passion. I was thinking about going back to work, but was not 100% well. I went up to 150mg t3 (over time) and went a bit worse but not hyper. My temps have never been stable and I spoke to dr P, who told me to come of all t3 and go up to 40mg cortef. This unfortunately did not help, temps still all over the place, can vary a degree every day and yes I've tried different themomeeters.

At this stage I decided to see if I could get an nhs diagnosis so booked an appointment at huddersfield. It was a diaster my letters kept getting lost and the surgery told me to ring up every day, my GP put that is was a referral for fibromyalgia so Dr B refused to see me. Back to GP new referral and eventually he saw me. The minuite we walked in he was moaning about the fact that i had been chasing the letters and refused to listen to symptoms only wanted blood tests. Results were

T4 14.7 (8-21)

T3 4.8 (2.5-6)

TSH 1.4 (.2-4)

Ferretin 25 (15-230)

Dr B said I was totally normal and he would not treat me including ferritin.

I started on iron and t3 straight away and have got up to 60mg T3 and 100mg iron one day 200mg the next.

Unfortunatley I have not been able to get myself recovering this time and neck, shoulder and back pain has been terrible as well as headaches. I am spending most days going from my bed to the bath and just praying the day will be over. I have noticed that my hands are no longer as cold so hopefully I am on the road to recovery.

If you have any advice, please let me know as I have been at my wits end.

Regards

Carolinesheilaturner <sheilaturnertpa-uk (DOT) org.uk> wrote:

I am sorry to hear you are feeling so rotten since stopping your T3. Can you remind me why you did that?

Luv - Sheila

..

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Messages in this topic (4) Reply (via web post) | Start a new topic

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Hi Shiela, Im hoping that my endo will try T3 when I see him again in about 3 weeks, then if that doesnt sort me out I will press him for Armour - Im trying to go down the NHS route and my endo will prescribe Armour, though he will only do so as a last resort, so Im trying to 'hang in there'. I do think that fibromyalgia is caused by hypothyroidism, but I wonder if there are other causes as well, or is it that because we werent treated early enough - in my case because my bloods have always been 'normal' - that the fiibromyalgia either takes longer to go away or even doesnt go away! But for anyone suffering still with fibromyalgia I really have found that the amitriptylene does make a difference.

Gill

I am one who says that Fibromyalgia is another name for hypothyroidism. This is the name doctors call this disease when they don't know how to diagnose or treat hypothyroidism. T3 is the drug of choice for people who suffer CFS, ME, Fibromyalgia - and is the active hormone all hypothyroids need. Gill, if you went on to Armour, I bet you your pains would disappear.

You've read the papers - you should perhaps try the medicine.

luv - Sheila

Hi Caroline, had you had blood tests before you tried the T3? I was diagnosed with fibromyalgia and given amitriptylene, which really helps me - in fact Ive been trying to cut it down since being on levothyroxine and my pains have come back! Im not sure how it works but it relaxes muscles and really does make a massive difference to me. If you havent tried it I would suggest doing so as the difference to me is being fairly normal or being in lots of pain!

Some studies on fibromyalgia have said its hypoT and T3 works but there are others that say it might be due to lack of human growth factor and other things as well - Dr Lowe is good for fibromyalgia studies.

Gill

Gill

Hi Shelia

Last year around June I think I was doing terrific, i was on 100mg t3 and 20mg cortef. I was able to exercise daily, gardening, and able to write which is my passion. I was thinking about going back to work, but was not 100% well. I went up to 150mg t3 (over time) and went a bit worse but not hyper. My temps have never been stable and I spoke to dr P, who told me to come of all t3 and go up to 40mg cortef. This unfortunately did not help, temps still all over the place, can vary a degree every day and yes I've tried different themomeeters.

At this stage I decided to see if I could get an nhs diagnosis so booked an appointment at huddersfield. It was a diaster my letters kept getting lost and the surgery told me to ring up every day, my GP put that is was a referral for fibromyalgia so Dr B refused to see me. Back to GP new referral and eventually he saw me. The minuite we walked in he was moaning about the fact that i had been chasing the letters and refused to listen to symptoms only wanted blood tests. Results were

T4 14.7 (8-21)

T3 4.8 (2.5-6)

TSH 1.4 (.2-4)

Ferretin 25 (15-230)

Dr B said I was totally normal and he would not treat me including ferritin.

I started on iron and t3 straight away and have got up to 60mg T3 and 100mg iron one day 200mg the next.

Unfortunatley I have not been able to get myself recovering this time and neck, shoulder and back pain has been terrible as well as headaches. I am spending most days going from my bed to the bath and just praying the day will be over. I have noticed that my hands are no longer as cold so hopefully I am on the road to recovery.

If you have any advice, please let me know as I have been at my wits end.

Regards

Carolinesheilaturner <sheilaturnertpa-uk (DOT) org.uk> wrote:

I am sorry to hear you are feeling so rotten since stopping your T3. Can you remind me why you did that?

Luv - Sheila

..

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Messages in this topic (4) Reply (via web post) | Start a new topic

.. __,_._

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Hi Gill I had blood tests at gp several times, always normal only ones i have are june 2005 t4 19 tsh 0.69 This said to me I wasn't converting and I did wilsons t3 protocal for about a year with great results. Only problem was it was a private doctor in Hove so very expensive. She has now retired so I had to stop. Next I went to see Dr Peatfield, he diagnoised me and put me on Armour, but it gave me headaches so he changed me to T3. I was doing great on T3 and cortef but came of it as my temps never stabalised. Now can't seem to get it right again. I have tried amitriptiline but it never helped and it is a drug I just don't want to use. It made me very drowsy and increased my migraines. Luv Caroline GILL

<gilljohnthurgo@...> wrote: Hi Caroline, had you had blood tests before you tried the T3? I was diagnosed with fibromyalgia and given amitriptylene, which really helps me - in fact Ive been trying to cut it down since being on levothyroxine and my pains have come back! Im not sure how it works but it relaxes muscles and really does make a massive difference to me. If you havent tried it I would suggest doing so as the difference to me is being fairly normal or being in lots of

pain! Some studies on fibromyalgia have said its hypoT and T3 works but there are others that say it might be due to lack of human growth factor and other things as well - Dr Lowe is good for fibromyalgia studies. Gill Gill .

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Guest guest

Hi Caroline,

When I was given this for pain, yes I slept well but couldn't wake up

properly the next day, I was like a zombie. Also it is known to cause

weight gain and I can do without gaining anymore. I wont use it again

either.

Luv Dee

> I have tried amitriptiline but it never helped and it is a drug I

just don't want to use. It made me very drowsy and increased my migraines.

>

> Luv

> Caroline

>

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Guest guest

Hi Caroline,

Maybe you could find

something about temps not stabilizing on http://www.drlowe.com

or ask him the question on his online facility.

Subject: Re:

Caroline

Hi Gill

I had blood tests at gp

several times, always normal

only ones i have are june

2005

t4 19

tsh 0.69

Next I went to see Dr

Peatfield, he diagnoised me and put me on Armour, but it gave me headaches so

he changed me to T3. I was doing great on T3 and cortef but came of it as my

temps never stabalised. Now can't seem to get it right again.

I have tried

amitriptiline but it never helped and it is a drug I just don't want to use. It

made me very drowsy and increased my migraines.

Luv

Caroline

GILL

<gilljohnthurgo@...> wrote:

Hi Caroline, had you had blood tests

before you tried the T3? I was diagnosed with fibromyalgia and given

amitriptylene, which really helps me - in fact Ive been trying to cut it down

since being on levothyroxine and my pains have come back! Im not sure how

it works but it relaxes muscles and really does make a massive difference to

me. If you havent tried it I would suggest doing so as the difference to

me is being fairly normal or being in lots of pain!

Some studies on fibromyalgia have

said its hypoT and T3 works but there are others that say it might be due to

lack of human growth factor and other things as well - Dr Lowe is good for

fibromyalgia studies.

Gill

Gill

..

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shopping deals? Find

them fast with Search.

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