View Full Version : Eat my words or Join the club?
04-16-2007, 08:40 PM
Well, I've a tentative 'Hasimoto's' to add to the CIDP and BC list...This one couldn't get 'checked off the list' after all? Saw an endo last week [seemingly a good one-I sure HOPE] as my blood work #'s were well, OFF. The referral was by my Ocon, and at first I admit I was reluctant as my long-time Hypo-thyroid had seemed stable except for a few months after the CIDP onset....DUH! Waiting for blood, etc. results - I really hate waiting now.
Everyone! This is your opportunity to TELL ME: I TOLD YA SO!!!!!
I mean, I'd kept asking my docs [ALL of them] are you SURE it's not thyroid? Always an "Absolutely Not!'... So I hummed along.. for FOUR years. I mean, every symptom overlaps with either my other med issues or the meds that are supposed to help. Yikers when the doc did the sono...he said he saw scarring, probably from auto-i-ness. At that point I recalled all YOUR posts, and had sort of 'filtered' them out blithely thinking...not me. Well I can eat crow? I am eating crow - now. You know what I mean.
BTW all along after an adjustment for that first TSH# change I'd thought all had been peachy? Teach me please, Point me to where to learn... It looks like some good info is out there, but there's gotta be more?
I guess in the meantime we should start some sort of running joke about how many auto-i's does it take to screw or put in a light bulb? Or, are they/is it like rabbits? The adventure continues?
Thank you dear people - patience is the art of hoping- from my favorite fortune cookie - j
04-16-2007, 09:08 PM
One of the best books out there is the Thyroid Solution by Ridha Arem
Best of luck!
04-16-2007, 09:26 PM
I got my thyroid problems out of the way early on, though it took the doctors about 10 or 11 years to figure out I had an over-active thyroid, and it wasn't until the goiter was starting to finally show, after who knows how long of being inward growing, that they diagnosed it. Face it, we're at the mercy of our doctors. I really think you should feed them the crow, rather than eating it yourself!
04-19-2007, 05:40 AM
but, will be getting cys of the test results in the mail before then. Am waiting for those results with part anticipation and part dread. Could be worse tho....
I'm just hoping that all that's needed will be some sort of tweak of thyroid meds, but only tests and time will tell.
IN the meantime, a small hope that at least ONE good thing happens in your day! - j
05-07-2007, 02:43 PM
I know how you feel....With a long family history of Hashi Moto's...you'd think the docs would have had a clue why I was sleeping round the clock, severe cold intolerance and other symptoms related to it.
But....I just can't seem to find the majic numbers for me as I don't always absorb well....My dose is changed just about every visit!:(
I'm sick of it!
Don't eat crow...it doesn't taste all that good! Yukky~
pics: Crow alternatives!
05-10-2007, 03:11 PM
Desiccated thyroid is the only thing that helped me (with Hashimoto's). The synthetics have only T-4*, and my body wasn't converting any to T-3. The desiccated has both and made a huge difference.
Just thought I'd throw that out here.
*There are synthetic T-3s, like Cytomel, but the usual Synthroid, Levothroid, etc. are only T-4.
05-10-2007, 10:27 PM
The synthetics have only T-4*, and my body wasn't converting any to T-3.
Thanks for that info, I didn't know that!
05-13-2007, 12:00 AM
the support... I am still learning, doing, being tested out wazooos that really won't change how I'm being treated, It's just that it escapes me, that in all my diagnostic testing the Hashi's wasn't eliminated.. I've really got to go over all those zillions of test reports and see IF anyone made any connections....I think not.
Honestly tho, I don't see how any therapies could have been changed given the other numbers on the other auto-i issues... Maybe, but unlikely some doses could have been more agressive to begin with and cut stuff off at some passes, but the insertion of the cancer issue into the mix messes up any diagnosis variables with the blender...so to speak//
I do have a good Ocon who referred me to the Endo...and the Neuro said...DO so..but, ya know, I've already got over 15 docs I see for the various stuff...Derm, Pod, Allerg, GP, Ortho, and, well the list is LOOONG.. When something goes off...you call the GP...and you get another doc in the practice who's essentially flying blind during an emergency...and you have to EXPLAIN what an auto-immune neuro debilitating condition IS....at 2 AM and well, at that point you don't give a fruitcake? Only because you have repeated 'like a parrot' consistently the SAME SET OF ISSUES for the last 10 hours...? As you have from day one, only more so to date..
Good thing about my new Endo...was I didn't have to EXPLAIN any of the other issues? Heck THAT was a very refreshing experience?
Cheryl, No, Crow does not taste good, I honestly didn't think that this all was in/on the agenda and could affect me so much with the bone loss things[I thought I was doing as much as I could in that wuarter]...do I give up the cancer prevention/bone sucking meds to prevent the cancer [a lo percentage either way --A +2% chance of non-recurrance while on it...vs. not] As opposed to fracturing any appendage just looking the wrong way at it? Well, you all know what I mean.. and all the baggage that goes with it...
Let's all deal with this garbage with CLASS and KNOWLEDGE and Knock those know-it -alls down on their keisters!
:hug: :hug: :hug: :hug: To you all! - j
05-13-2007, 02:01 AM
I would hate to see anyone say I TOLD YOU SO,here at NeuroTalk don't
we hear of that from the cruel outside world. You know like beloved family
Well here we are all in the same boat,just slightly different ones,well let's
say different names. When my 12 yr. son was diagnosed with Thyroid cancer.,
(He is 29 yrs. old now). I had people looking all over for books,fianally a
friend found one.It was called something like Rare dieases in Children. And that's about it said no more than a few lines. But i just neeeded to see it,
my husband had the same cancer..I heard and the saw all the symtoms,but
well i beat up on myself.But after i read the few lines we started putting all
our energy into our son.
dalek the book that was mentioned is one of the best books i have read as well. I wish nothing but the best for you,we are here to help each other.
You have always been so kind,and your humor gets us through as well.
Oh today my sly Grandchild finally came into this world.
He weighed 8lbs.9ozs
21 inches long,they had planned on having him at home with big tub,and
midwife. But it didn't happen, after every effort they all went to the hospital.
His head measured 14.65 inches round and there both doing well.
Since i was in Mo. and watching all this happen in Or. WOW.She had a casarean,and Staples.But the most content look on her face as does that
sweet darling first grandchild of mind. He does not have a name yet. Talk
about a Mothers Day present. Oh her husband did not pass out. :) :)
:hug: :hug: Grandmama Sue
05-13-2007, 05:41 PM
BIG baby, Grandmama Sue! Congratulations. Is that why you were posting at the ungodly hour of 2 AM?
Sorry, don't mean to hijack the thread, just had to offer my congrats.
05-14-2007, 02:20 PM
It's the kind we all need lots more of! - j
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