I DON'T UNDERSTAND??????

[missouriangel]

Seeing 6 doctors - more questions than answers!
I have my regular doc that tells me I have Thyroiditis, Hashi's, bordering Hypo, Connective Tissue Disease (CTD), Neuropathy, and I suffer from migraines with possible seizures. He has sent me to specialist including:

Endo: says I don't have CTD, thyroid levels look good and to come back and be checked in a year, would like to have xray done of Thoraco--lumbar spine to check for osteoporosis

GI : all looks well, have thyroid checked in about 6 weeks to see if it goes any lower, I show signs of having an overactive thyroid or a patient taking too much thyroid medication. (I'm not on any med for thyroid).

Neurologist 1 (Neuropathy) - EMg was good, come back in 6 months and it could be different. He believes I should have another CT scan done of my head and neck to confirm that isn't causing my leg pain.

Neurologist 2 (Migraines) - Believes I have Neuropathy and recommends the EMg be redone. Also believes that my pituitary gland should be checked.

My labs from my GI
Anion gap 6   (low)
TSH 0.30  (low)
Free Thyroxine 0.62  (low)

Does anyone know what is wrong with me?????

[gimel]

While you are waiting for help from Dr., you might get an idea of what is going on by checking your basal body temperature.  BBT is taken in the armpit, before getting out of bed.  Dr. Broda Barnes found this to be a good indicator for metabolism/thyoid levels.  He suggested as a reference range 97.8-98.2 degrees.  He developed this concept many years ago, before blood testing was as sophisticated as today, and obviously before the reference range for TSH was revised.   To him, a temperature below 97.8 degrees indicated low metabolism/ low thyroid.  Of course this is not the only thing that can affect BBT, but taken along with patient symptoms and testing it has been the experience of myself and numerous friends, that it is directionally correct.

[missouriangel]

Well, they are finding all kinds of things that are wrong with me. The only things I'm worried about arre the ones that are preventing me from living a normal life. I'm not a whiner, I can take some pain and cope with some snivels and deal with some sickness, but I have to be able to function safely. My job depends on it.

[peggy64]

I know what you mean...Its like ok, now that we know what its NOT can we find out what it IS...

[missouriangel]

I don't even care what the name of my illness is, all I want to know is how you fix it or atleast make it possible to live with it. This is **** that I have 6 docs working on me and none of them can make up their mind of what is wrong with me. A few of them have said a name to something that is wrong with me and then when I went back to them said nope you don't have that, we don't know what is causing that - that is for the OTHER doc to figure out. I just LOVE how they are using that now!!! I have to advocate between them and they all look at me like I'm stupid, ha ha. How many docs does it take to prescribe a pill???? Sorry, not all of my docs are bad I'm just venting. I really like a couple of them, but there is one that I just fired that REALLY made me mad!!! My old Endo.

[peggy64]

MMMMM>>> that is frustrating....

Hope it gets worked out before to long. These health issues drive you mad when they just go on and on and on and on and on and on and on and on and on and on and on and on and on .ha ha............

speaking from experience here...

I wish I could afford an ND

[missouriangel]

I forgot to tell you, I'm not on any thyroid meds right now, My internal med doc doesn't know what to put me on because of my other med problems and right now it's best to just tough the thyroid symptoms out. Peggy64 all 6 of the docs are TRYING to participate and you are right it is very confusing and frustrating. My GI accidently came across this lab when she was taking my labs for her tests. I have Erosive Esophagitis with scarring in the distal esophagus and they need to check for Barrets, but my esophagus needs to heal with meds for 12 weeks before they will try the biopsy with the endoscopy for testing. I just went and saw an Endo, but we had a communication problem so I have been transfered to a different Endo that I will see October 24. More of the hurry up and wait! lol!

[peggy64]

Your hashi diagnosis is really the problem here. It causes you to go from hyper to hypo. I just recommend you do lots of research on how to deal with those flucutations and the different kinds of treatment.

Also, do you have one dr that is treating this disease or are all 6 participating? If so, that can get very confusing for you.

[missouriangel]

Sorry it took me so long to get back, many appointments and test going on right now. Thyroid problems diagnosed that I have are Hashi's, Thyroiditis (TPO 767), and Nodule within inferior left lobe. Nodule not malignant, but cold, hypervascular, (average 2x2.5 cm). Uptake Scan 12% (lower limits - normal 24-hour uptake 10-33%) presence of photopenia.. Seeing Endo to sort out symptoms some that show Hypo. Blood work is weird to say the least, it is really different everytime it is taken. TSH always been on the VERY low side of normal until GI labs. T3's and T4's checked a few times and were in (lower) normal range. Creatinine stays in higher limits. Cortisol and Vitamin D checked waiting on results?  

[stella5349]

Did all these doctors read the same lab or did they do there own?

If you have more information like scans - more labs and such post them

I know many doctors besides endos can help with thyroid disease. - But a specialist in GI doesn't sound right?

His tests are way to general to even determine any thyroid problem you need these

Free T3 Free T4 -- the T4 you had was bogas
TSH
TPO
TgAb
TSI

That's to start with - then if a problem is determined there are more things to pin point some of the stress the gland is having to properly treat you.

Is is even in assumption that you even have a thyroid problem to begin with.

What are your symtpoms and history and meds your on?

[peggy64]

First, I am so sorry you are going through this, on top of being sick. That is like adding fuel to the flame.

Do you by any chance have your antibody levels?  do you feel hyper?  this might be hyper for you.

If you have been told you are hypo, but now feel hyper, (especially with no treatment) hashis could very well be what is going on.

I am sure you are keeping your lab copies. And if you are not happy with the endo, don't waste time on him. I know how frustrating it is with this disease. No one wants to listen because they don't know what is wrong, and it is hard for drs to admit they don't know something.

Mine told me she didn't know what else to do for my condition. That is a great dr in my opinion. At least it opened the door for me to go to another one, and not have it hanging on my head that it is all in my head.

Hang in there....