What should my next course of action be?

[scarlet37]

It's been a while since I've been here but I know I can count on this forum for some great advice and game plans. For those who don't remember or are new I had a TT in 2006 ( non cancerous hurthle cell neoplasms was the final dx).
My latest labs show I am hypo again but my endo won't increase my meds because he does not believe my symptoms are thyroid. I also have Narcolepsy so symptoms of fatigue and brain fog do flow in a gray area for thyroid treatment. My latest labs are as follows:

TSH - 2.15  range for this lab is .47 - 5.0
FT4-  0.58   range 0.64 - 1.56
Total T3 - 107  range 97 - 219 ( he will NOT test FT3 as he feels this is unreliable)

I feel based on the Ft4 I am totally hypo but he won't change the meds so I called my neurologist because I was afraid of continueing to take ritalin( a stimulant to keep me awake for Narcolepsy) with that level being so low. He agreed that I need an increase so he gave me a referral to the endo his wife sees. I got in 2 days later because of a cancellation. This doc was awesome at first and told me he treats on symptoms not labs. As the visit went on I felt a sleep attack coming on and then the mild cataplexy ( muscle weakness) where I can;t hold my head up to which endo#2 responds your labs are fine you should continue to see the other endo. I am not sure what is wrong whether it is depression,anxiety or mental illness but it is NOT thyroid.( I've been through this a million times over because docs don't understand Narcolepsy which is NOT a mental illness) I will however give you a script to have an ultrasound done since you've not had one post op and I'll call you with the results. There is no need for a follow up visit.

I did contact my primary but he said my labs were fine but what they dont understand is that because in Narcolepsy  there is damage to the hypothalamus ( which is directly related to the pituitary) they cannot rely on my TSH alone.

So I ask all the dear board members what do I do now?

I'm sorry if this post is choppy or out of sorts I am exhausted because I just had yet another sleep study and my brain is NOT functioning properly today. I'm sure you all understand the brain fog!
Thanks for any and all advice anyone can offer.

[laura1967]

not sure i can offer any advice but i feel horrible for you! Yes it would seem you are hypo according to your free t4 result....yes i agree you should have a Free T3 done. Your free t4 didn't even make it into the low normal range....geesh! I think you should continue your search for a new dr....maybe not an endo but maybe an internal med dr or someone who SPECIALIZES in thyroid specifically....someone who thinks outside of the box. Don't give up!

[Thypatient]

I would think your experience of dealing with Narcolepsy, which is awful by the way, should be the primary concern here.  I’m thinking that issue, and the med you’re on for it, is what’s making you not feel well (JMT).  With that said, personally, I think it’s the neurologist who needs to be reconsidered here.

Also, I’m somewhat familiar with Narcolepsy and know it’s in no way a mental health issue.  Any dr suggesting so also needs to be reconsidered.

Because you had a TT, and because there could be other issues arise for you in that area, I would stick with seeing a clinical endocrinologist.  They are the ones, among drs, who have the broadest licensing to order needed testing for thyroid disease.

One other thing, don’t forget that taking more thyroid medication, if not absolutely necessary, can bring about its own set of problems too.

I wish you well.

[utahmomma]

Have they discussed doing an MRI to see if there is anything structurally affecting your pituitary or hypothalamus (cyst, lesion, etc.)??