I was diagnosed with hypothyroidism in April 2016...in reality I think I had problems way before that. I was diagnosed with lupus in 2009, but so many of my symptoms have improved since being treated for hypothyroidism with...you guessed it -levothyroxine that I wonder how much of this is actually lupus, as the doc just threw the diagnosis on me after a hospital stay because "sjogren's doesn't do this and we wouldn't treat it any differently anyway. (sjogren's syndrome - my first diagnosis).
I still have many lingering symptoms that would improve for a couple-few weeks with each dose increase, then I'd go back to feeling like crap. I am better with the levo than I was without it, no doubt, but I wonder if I am being treated adequately.
I am currently on 113 mcg levo. I have tried NDT (NatureThroid and WP Thyroid) and felt MUCH worse. I understand that is an indication that I may have iron or other mineral/vitamin deficiencies.
I went back on levo last year after an unsuccessful couple of weeks on NDT (I felt absolutely terrible) and have been on it since with hardly any increase (0.5 to .1 to .113)
The reason I am here today, is because last week I asked my doc about a trial of cytomel since my symptoms persist and review of my labs indicate that my T3 never budges, even if my T4 goes up some. Mentioned reverse T3 to doc - she didn't know what it was (not surprising) and didn't order it. I have tested negative for antibodies.
My latest results:
TSH 0.19 (0.4 - 4.5)
FT4 1.5 (0.8 - 1.8)
FT3 2.4 (2.3 - 4.2)
Lab results flagged my TSH as being too low. FT4 is the highest it's ever been (usually ranges from 1-1.2) and FT3 was steady at 2.9 forever; this is the first time I've seen it that low.
Disclaimer - I did trial 150 mcg of Levo for about a week prior to lab draw because I felt so so bad (doc knows this) and felt a boost for a few days (as per usual), including less bloat, less constipation, less brain fog, more energy...but after about a week that all changed and I was feeling unwell/worse than before so I backed off, took a couple days off entirely and then dropped back down to my prescribed dose. The bloat/consipation returned with a vengeance. Looking at my labs I assume I boosted my T4 up too high with the levo trial, and my T3 did not respond along with it. Perhaps that's why I felt bad after a few days and my TSH is so low now?
I fear that with my TSH being so low she will be hesitant to give me a trial of T3 (she wasn't familiar with that either; thought it was for hyPER); but looked it up while I was there and said "oh, this hits straight to T3." She said she would let me try cytomel if my T3 came back low, which it did, but since my TSH is so low I fear she won't be willing to do that now. I haven't heard from her yet. I just got my lab result notice via email direct from the lab today.
My symptoms: Hair dull/severely thinned out, breaks/snaps, only grows so long, "scales" form on scalp, texture has changed - in a nutshell my hair is like a brillo pad. Use to be super thick and full (I know..you've all heard this before...waaaaa) Some spots won't grow at all and temple region looks just about bald. I have been dependent on wigs for about 6 years now, as nothing improved my hair condition. I have thin/sparse (none in some spots) hair on my body. I don't need to shave anymore.
I am always cold - blue fingers/toes with slight temperature change or anything that makes me nervous (raynaud's phenomenon)
My muscles hurt all the time; if someone touches my arms or legs it feels like they are poking me with a knife!
Major fatigue. Legs feel like they have lead in them
If I don't keep my calories low I can gain 5 pounds in a day
MASSIVE brain fog/terrible memory/attention span is awful/can't find my words/some days I feel like I have a speech impediment!
Libido - absolutely non existant - zilch. Have been single for 5 years after my guy dumped me I figured it was best to stay that way. This makes me very sad; I'm sure some of you can relate. I guess I am just an asexual now.
Treatment resistant depression. I have NO sense of well-being and have been emotionally flatlined for years. The only improvement I saw in that was when I first started taking levo. I am unable to get excited about anything and have basically withdrawn from participating in life, except when I know I "have to".
I am so sorry for the length. Please share your thoughts with me. Am I on the right track, asking for cytomel?
Vit D is 59 (20-100) - I am working on getting that number up. She recently tested my B12 and it is 427 (200-1100).
She wants to send me to an endo...but if that endo isn't going to do much more for me then why spend the money and waste my time? My doc is awesome, really...and I know she is trying to do what she was taught, but I'm not sure how much further I will get with her if she won't trial me on at least a small dose of cyto to see what happens. Anyway...