How to prepare for endocrine appt.? Advice? (hashimoto's)

[leilajax]

Ok, so I'm on to my 3rd endocrinologist next Tuesday.  Symptoms: severe weight loss (95 lbs, change in appetite only when I'm in severe pain), blurry double vision, nervous energy, weakness, muscle loss, joint pain, pain in the bottom of my feet, pain in my hands, neck pain, difficulty swallowing (no goiter), small nodule (as of last May), heart skipping a beat, heart palpitations, blood sugar changes, constipation, low body temperature, low blood pressure, numbness & tingling, muscle spasms, twitches, dry mouth, eyes, skin, thin skin, severe brain fog, difficulty concentrating, among many others.  My question is that besides a 3 month period of hyperthyroid blood results, brought down with 30 mg of methimazole (currently not taking) and a TPO of >1000 (normal<35), TSH, FT3, FT4 are all within normal range (do not have my latest labs, yet.  was told they accidentally mailed them to the wrong person... confirming my theory that I need to move on to a new endo.)
Obviously, I have Hashi's, and obviously, I'm suffering.  So my question is what do I say when the doctor, yet again, says "your labs are within normal range there is nothing I can do for you"???  I usually cry when the doctor says this, which I'm sure reinforces their prediction that it's not thyroid... I'm just a basketcase.  I want to be strong during this appointment, educated and well prepared with lists and printouts (as Hashimoto's might rob me of my brain that day and I will need back up).

[Jackie419]

Thanks to you and Red Star for this post, it's helping me to prepare myself, as my brain is a bit foggy right now.You are also putting into perspective for me that I could be much worse off. It's a battle whether mildy or severely ill from this stuff. Been having doc problems myself and I know the stress of it can make us feel even worse---I wish you the best of luck and hope you find a great doc soon!

[leilajax]

as of 6/28/12, TSI was 59% (>=140% are considered positive) this was taken when I was on 30 mg of methimazole and I did NOT stop taking it before/during blood test.  I do not know if it affects TSI result.

hopefully your pharamacist is all caught up by now and you have started:)  Please keep in touch, I want full details and am wishing you best results!

[Red_Star]

I'm still waiting for my Armour it to be made up. There is only one compounding pharmacy where i live and the pharmacist has only just returned from time off so she had a backlog of work to do. Always a drama. :)

Hashitoxicosis goes by two definitions - flare ups with Hashimoto's thyroiditis or concurrent Graves and Hashimoto's. Have you been tested for TSI antibodies?

[leilajax]

P.S.  I can't remember when you said you were giving Armor a whirl... sorry, stupid brain fog!  Have you started it, yet?  I'm so excited for you and on pins and needles to see if it helps.

[leilajax]

You said it!!!  I just got a new PCP (who I will probably ditch now and go back to my old one) who swears that I have MS.  I told her "no... everything points to Hashimoto's which I've been diagnosed with.  My spinal MRI and brain CT has cleared me for MS!"  She said, "Well, many people with MS show symptoms and no lesions for years."  Me:  "Well, if we don't treat the Hashimoto's, I could very well end up with MS!!!"  PCP:  "Your thyroid ranges are normal, I wouldn't even test your thyroid any sooner than every 6 weeks.  Thyroid function just doesn't change week to week, nor day to day, like you say your symptoms are showing."  Me: pulling out lab results "Look, in May FT4 1.27, TSH 1.29.  Then 5 weeks later, FT4 3.0, TSH .001.  Then 4 DAYS later, FT4 4.26, TSH .015, FT3 9.1!  So what you're saying is... if you were my PCP then I would've been hospitalized or worse with thyroid toxicocis?"  PCP:  silent  Me:  *thinking- I will not be back to this office!*

[Red_Star]

"Hashitoxicosis:  What Your Labs Will Look Like  "Hey, Endos, Listen Up!"

Here's what stumps doctors most when you are dealing with Hashitoxicosis - your labs.  Due to this constant cycling of hypo to hyper from minute to minute and hour to hour, the net effect of these changes is a zero sum game - normal labs."

- Hashitoxicosis: Does It Really Exist? YES!