Well.... here we are at zero answers again

[mommy2two2008]

Well, I am all out of thoughts and about out of money (seriously) and REALLY FREAKIN FRUSTRATED.

I have had 2 ultrasounds on my thyroid in the last year, 1 CT of the neck, and now an MRI of Brain and C-Spine ---- GUESS WHAT, NONE OF THEM really did me much good.  No one can explain my swelling (sort of hashi) thyroid with normal blood, swollen glands in my neck, ringing in my ears (right mostly) full feeling in the right ear that oddly enough Afrin aleviates for a bit, numbness and tingles in my throat and face (the two calcium panels I had were normal, 9.6 and 9.3) but if I take Calcium with Vit D - those tingles stop. No one can tell me why the radiologist says I have a multinodular goiter without a discrete or focal nodule. Oh, and I seem to have a droopy eyelid (can you guess which eye??  RIGHT).  I had the doc call for a re-read of my MRI to include the soft tissues of the neck, can you believe it was not "visualized" because the orders were for the brain and c-spine, not for the brain, cspine and soft tissue neck.  What a waste of about 4 GRAND!  Good thing I have insurance.

My one year on this board is coming up and I am starting to believe that you guys are the only ones who believe me.  So, how do you get an ENT to order all the vit panels you need from an endo?  LOL - I hate HATE hate the endo in our town and besides, I am sure one day soon I am going to get fired becuase I am never at work anymore.  I seem to be chasing an answer for problems and it's (the answer) to fast for me to catch up.  At the rate I am going, if this is cancer, I will die before they even realize I had it.

REALLY FREAKIN FRUSTRATED oh, and to top it off, I am getting "thick neck".  I can look in a mirror and see the swelling, but, no one but my GYN (although he may be just indulging my insistence) believes me.

So - now - I am left with 2 options.......

LIVE with this mess continuing ...... OR .......

Relent to the insistance of my ENT that my thyroid needs to come out.

HMMMM .... thoughts on my rant anyone?

[mommy2two2008]

Great news - My little one has EBV - now, normally, I am sure I would not say this is good news, but, she was negative for everything else so its really great!

Dr. said to watch her neck nodes (which currently measure 2.5 cm on left 1.5 on right) to make sure they are not getting bigger and if they do, would recommend extration of the biggest to be sure, but other than that, she is just fine.  She does not feel ill at all, which is great.

This has my mind churning and I am calling my ENT this afternoon to request that they order an EBV complete panel on me as well since I have the neck nodes in addition to my thyroid swelling.  If positive on me, it could explain a NUMBER of my crappy and consistent symptoms and maybe I could rest easier.  

My hubby and I discussed the thyroid situation at length and agreed that if after we close on our home in April or May, I still have the swelling thyroid, I will relent to my doc's insistence and let him remove it.  I cannot live another year with this mess and if it is still swelling then, I just want to get it out and over with.  I have to take the med regardless, so, lets just remove and biopsy and get a real answer, ya know?

So - calling my ent momentarilly - will let you guys know more as I do.  Thanks for all the well wishes and prayer for my little one, it worked!!!!

[mommy2two2008]

Thank you Kel!  I hope you're doing well. We get the results from the infectious disease pedi Friday.  I am sure she's gonna be fine... praying, praying, praying.

[KelDC]

I'm so sorry to hear you are still struggling. I hope your child's doctor has some answers for both of you so you can rest and get back to living.  Sending good thoughts your way!  

[mommy2two2008]

Thanks MK!  How are you dear?

[MKlacza]

Hey there.. You are your little one are in my prayers. I have a 3 year old and 15 month old. I know the feeling and its not a good one. All will be found and you will have some answers too.


God bless!!
MK

[mommy2two2008]

Thanks everyone for comments on this.  I just am at a loss and it is freakin me out about my little one. 3 is way too young to be messed with by sickness (although, thank goodness, she does not feel ill)  I keep checking her thyroid area (I know, insane) just to see if it is swelling too.  LOL - wouldn't that be a load of **** to have my thyroid and hers bug out at the same time!

I honestly feel hers is staph still, just not healing and they should have biopsied it a long time ago.  The infectious disease pedi is on her game so I hope we will find a simple solution by Friday.  I really think if they admitted her and pushed IV antibiotics, it would resolve the lingering staph, if in fact that is what it is.

[stella5349]

My heart is with you Kim

It is ODD both you and your child have issues.

Let me know what happens.

[Smilerdeb]

I wouldnt touch it until you have seen a Doctor in regards to it.

It seems pretty potent and does affect the heart.

http://www.cayce.egympie.com.au/healthatomidin.htm

[mommy2two2008]

Thanks gals for the comments on this.  It was a really bad swelling weekend, which seems to be better now.  I still don't know what to do.  My little one is being tested for a lot of things right now (she has had a swollen neck node(s) under her jaw since October when I had surgical staph), including malignancy.  My hubby took her last week because I had been out too much for my mother in law's death and he was off for that week.  Anyway, my hubby told the infectious disease pedi that I had something going on with my neck too (swelling thyroid, etc and nodes and ear, etc) and she seemed very interested in that.  We go back this Friday to the infectious disease pedi to get the results of all of her blood tests (a list is below), so I kind of half hope they find an answer for her so they can test me for that too.   It is coinsidental that we both have problem necks so wouldn't it be great that they find mine by finding hers.  The pedi said if they don't find her answer by blood test and chest xray (which was normal) then they suggest removal of the node they can see protruding so they can biopsy it to figure out what to give her.  Again, we shall see.

EBV with titers
Bartonella (Cat Scratch Fever)
Toxoplasma
Immunoglobulin
LDH and Uric Acid (malignancy screening)
CRP, ESR, CBC


So my quest for answers (for both my child and me) is ongoing.  Please pray my little one is just fine.

[AJWS6]

Hi,
Ooops, thyroid brain fog.  Sorry !    

[Thypatient]

Oh, this is so frustrating!  I do hope something reveals itself and that you find out for sure what's going on.  Personally, the recommendation for surgery still seems a bit far-reaching at this point, especially since what's going on continues to be vague.

Hang in there.

[stella5349]

Oh I am fine - just some decisions on my plate right now

that's all.

You take care and I hope your day goes well.

[AJWS6]

Hi,
Sorry to read your not feeling well.  I surely don't have the experience, to answer your questions, but I can relate and understand all you've shared.  Thyroid disorder sure does take forever to get under control.  

Thanks for all your help & support, just wish I knew more about thyroid, so I can help more often.  Hope you feel better soon, wish you a speedy recovery.  

Happy Valentines !!

[stella5349]

Kim

I found a huge souce of help from the University College in Madison for my thyroid problems.

I thought back to Utah saying things to me about finding a good doctor with thyroid knowledge and let me tell you. When surgery was a possibility - I was not going through the mess of hit and miss again on that.

I think you are beating a dead horse with these doctors you have and may need to step out of the box like I did.

Start googling up thyroid surgeons at your university hospitol and see what comes up.

[laura1967]

Oh boy mommy...I am so sorry for your frustruation! How about they remove 1/2 of your thyroid....the side that has caused all the swelling, instead of all of it. Have you asked that?
It gets so frustruating trying to live not feeling well....please just try to keep hanging in there. Time to go to a quiet room and spend some time by yourself and try to listen on what you should do. Pray and listen.
Hugs to you today!
Happy Valentines Day!