Re: Hi Topper - Is there a link between wonky tendons and low thyroid?

[Guest guest]

Being in Thyroid storm is a pretty dangerous thing..by the time that you

reach storm there isn't a heck of a lot that can be done.. the stress to

the heart and the organs can make it a life threatening adventure just to

walk up a flight of steps....

I know that having RAI is a scarry thing... and it's potential resulting

side affects are no treat either... but the alternative can often be

death... so when you do get discourage or frustrated remind yourself that

you've already beat death once.... now you just have to get back into

fighting form so that you can take him on again!!!!

There... pep talk for you and for me!!!!

I had to cut back to stretch the pills that I had... cutting back and

gradually lowering the dose, is far easier on your body than stopping

cold turkey... again it's a heart/body organs thing...

Drug companies won't 'help you out' with meds when your are unable to buy

unless you have a prescription... and to be honest if I could afford the

$1,000 to $1,500 it would cost in this area for me to see a doc, since I

don't have insurance, I would most likely be able to afford a $10 bottle

of pills.... Whole long history as to why I'm not eligible for medical

assistance.. the short version is that I'm childless, white,

drug/alcohol/AIDS free and therefore not worthy of assistance.. I've been

invited to become an addict, pregnant or acquire AIDS, at which time I'll

immediately receive assistance in getting my thyroid lab work and meds

covered. I have been told on several occasions that my no longer having a

thyroid gland is not a life threatening situation....

How's that for compassion??

I'd like to talk more about your leg, if you don't mind... I've been

doing some closer inspection of the situation that I have with my legs...

the butt to leg/sciatica thing.... The reason that I ended up on crutches

was that I developed what the docs diagnosed as plantar Faciitis in my

right foot. I didn't know at the time that it was linked to thyroid, I

thought I'd broken my foot or something... I struggled on with it for

quite some time at work, limping badly, until my other leg just gave out

and I collapsed.. the doc examined me, proclaimed it PF and that I'd

caused it myself by allowing myself to get too fat. Yep.. that's what I

was told... He gave me instructions for special exercises, gave me a note

to give to my boss that said I either be given two weeks of NOTHING but

sit down work (I was to leave my work station ONLY to use the bathroom)

or he'd write it up as worker's comp and have me take some time off

work... I was told to take Ibuprophen, as needed, for pain....

Well the pain never went away.. by the end of the two weeks I still

couldn't walk right, and was in constant pain with that foot.... I ended

up needing crutches to walk...

It didn't take long for tendon problems to kick in.... up the back of my

legs, first... from the butt down.... eventually it also worked it's way

up, affecting tendons in my back and hips as well.

Skip forward about 3 years, having reached a point where I couldn't even

go to the bathroom without crutches.. and the john was only 20 feet down

the hall.... and I was eating Ibuprophen like M&Ms... 20 and 30 at a

time.... I bought it bottles of 500 and 1,000 tablets! I'd lost that

job, cuz I couldnt' do it on crutches... so lost my insurance... I'd

hoarded both Synthroid and Levoxyl until my prescription ran out.. the

doc had failed to put a number of refills on it, he just put a 'fill

until (date)' on it so I just kept getting refills.... That lasted me a

while.. then I ran out again.... I was without for nearly three years and

was pretty much a mess... couldn't walk on my own, constant pain, yada

yada yada and reached a point where my breathing was intermittent...

Sometimes by body would just stop breathing.. I had to think about it to

restart.... I was getting scared of going to sleep, what if I stopped

breathing and didn't restart? That's what got me online and learning...

in couple of months I learned that there were other medications (hormone

sources) available (natural thyroid, like Armour and it's clones) and

that PF was NOT only a physical injury from over weight or one suffered

by athletes, but that it was also a symptom of

Long term undertreated hypothyroidism.....

I'd been underdosed....

skip forward... I started buying pills on my own... gradually working up

my dose, applying the knowledge that I'd absorbed in my research... and

in just a few months I was

OFF CRUTCHES and could walk on my own...

In less than a year all the foot and tendon pain was totally gone (and my

dose was still less than it should be).

So.. I came to the conclusion that my thyroidless body wasn't making very

good use of synthetic T4 meds (you are on Synthetic T4).

With my stash of pills running low I started to supplement my natural

thyroid with synthetic T4.... amazingly I started to develop tendon

problems in my legs again.... Playing around with the dose I could

directly link it to the use of synthetic T4... Why? I have NO idea. I've

not read of anyone having this problem... not heard of anyone having this

problem... but if I take it consistently at a dose anything over 50 mcg

per day, or for shorter periods at higher doses - like 100 or 200 mcg per

day... tendons kick up again....

This last round of 'experiments' had the tendons of legs involved around

the knee and thigh... without warning I'd be getting up from a sitting

position and they would lock... freezing my leg in whatever semi bent

position that it was in when it seized... it could take as long as a day

or two for it to relax and allow me to straighten and bend the leg

normally again... if I stopped the Synthetic T4... in as little as three

days I'd stop having problems with the tendons....

I have a strong math and science background and hold current

certifications in Pharmaceutical Clinical Trials, Anatomy and Physiology,

and Physical Assessment Techniques... I was also a weight lifter before I

stormed, it's pretty sucky to have spent all those years developing a

decent set of muscles to loose it all.... so I guess it's pretty obvious

why I run these little experiments on my own body's reaction to dosing,

supplements and such..... I NEED to learn why stuff works... what causes

things to go wrong and what causes things to get better. I want to be

BETTER!!!!

Right now I'm on 100 mcg per week... in an attempt to build up my levels

after being short dosing for so long and then running out of my natural

thyroid, so far no problems with my legs (knock wood) but I'm having a

new issue with my lower back... still working on trying to figure out

what it is... the muscles go into a spasm kind of thing if I'm up on my

feet too long and if I don't sit pretty quickly after it starts something

decides to stop working back there and my legs give out from under me....

Obviously I'm very careful about keeping near things that I can either

lean on or sit on when I'm up and about... this is a new thing that has

come up in the last few months....

Although.. we had a pretty decent snow fall over the last couple of days

and I put a decent dent in the knee high drift running across the deck!!

Only stopped cuz the snowblower was blasting me as the guys worked on the

driveway...so I'll be out there finishing the battle of the drift

tomorrow, along with the clean up of the snow blower over spray... gotta

love that wind.. blows the snow EVERY where!!!

Anyway.... I'd like to talk more about your pain... see if there is

anything that would suggest a tendon similarity...... It might not be the

same thing... but if it is... I'd be curious to see if your's could be

resolved, or at least improve...

The bumps on your legs... describe them?

Are they little in size like a mole or zit, or larger like the dome on

the side of an orange or grapefruit?

If you GENTLY press them, are they pitting (holding the impression of

your finger for several minutes), or do they just 'bounce right back'?

Are they warm to the touch?

Definitely check out the links on the lymph.. the one site has some

excellent photos....

I still miss ... we never got to meet in person, she was in Texas,

I'm in Minnesota.. we always talked about getting together... but just

figured that we'd do it some day, no rush....

Oh my, how long to feel better. That's pretty much impossible to answer..

once you hit on the right combo for what your body needs, it can happen

so sneaky that one day you will wake up and notice that things that you

couldn't do before you can again.... for most it's not a night and day

thing... it seems to be more of a 'hey, did you see that?' thing....

I'd REALLY like to see your labs... to see what the docs are testing.. if

they've ever checked your antibodies.... and I'm curious about your

hurting leg thing.. if it's at all related to what I've been through....

Topper ()

www.thyrophoenix.com/donations.htm

www.toppers-place.com/certs.htm

On Sun, 25 Feb 2007 19:46:33 -0000 " Jeff Wade " bennydabum2003@...>

writes:

> - Thanks for your concern and info. I'll check those sites

> out. My thyroid problems started right after the death of my mother.

>

> There were other things going on in my life that added to stress,

> mainly an ex-wife and my three children. From what I've read, some

> articles state that stress can bring thyroid problems on. Anyway, at

> the time was going to V.A. hospital for treatment. The endo told me

> about eyes and the doctor that did nucleur test and R.I. said that I

> had a " thyroid storm. " I tried meds for hyperactive thyroid

> (methimazole) but they didn't help. Didn't like the idea of R.I. but

> they said it was the best thing for me. I remember about 4 weeks

> after R.I. my world turned upside down. No energy whatsoever and it

> took the wendo doc forever to get meds to 175mcg. Then started to

> develop other problems. One other thing I didn't mention. There are

> bumps on both of my lower legs, none of the doctors seemed to know

> what they were. Finally, a dermotologist had me seen by 6 other docs

> (apparently rare disorder) and he said it was myxedema. Gave me

> Betamethasone Dipropionate cream to rub on legs and then cover with

> saran wrap overnight. They went down a bit, but it looks like there

> here to stay. Don't really bother me. However, my left leg is really

> hurting right now. Not sure if it's sciatica (history of bacl

> problems). Sometimes it feels like a pulled muscle - goes from butt

> to leg. Why did you end up on crutches ? It sounds like you've

> really been through it as well. Without my faith, I'm afraid I

> wouldn't have made it this far. Was going to drive car off a cliff -

> but I don't have a car! lol Sense of humor also helps. , in

> case

> you don't know or sometimes forget, what you and your friend have

> created here is awesome! My heart fell to my feet when I read the

> post about your friend. However, her spirit lives on threough this

> group and I'm sure she would want you to continue the good work that

> you're doing here. Hopefully, in the future, I can help a bit.

> Things

> have been extremely difficult lately, even had to go to welfare for

> food stamps.

> It was a good friend of mine that told me about internet, not the

> doctor. People can be hurtful, especially those closest to us.

> , any idea how long it will take for me to feel somewhat

> normal. Looking back, I'm afraid this whole mess was my own fault.

> Moved from NJ to NM about 6 months ago. Was feeling OK. Had no

> doctor

> out here and when my synthroid ran out I used an old script

> (150mcg).

> Would take one and a little bit of another. Figured it was no big

> deal. Last night, I read an article about how the shelf life of

> synthroid breaks down near or right after exp. date. Also, there's a

> difference between drug mfg.

> , have you tried getting help from the drug companies? The

> Provigil are $8 a pill x 2 a day + $$$. Thank God, the drug mfg.

> just

> sent me 200 free pills. You wrote that you're cutting back on your

> dose. Isn't that dangerous?

> Well, I feel like I'm rambling. Thank you for taking the time to

> welcome me to the group and for your help. This has been such a BIG

> DOSE of HOPE! That's something the medical community can't write a

> script for. Keep the faith and know that you're not

> alone. " Walk on, walk on, with hope in your heart, and you'll never

> walk alone. "

> I can tell you're a true warrior and an inspiration to others.

> God bless you and thanks again for all of your help. Jeff