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EndocrineWeb Community Advice

Hi everyone.
Been a crazy few past months getting tests done and such since I've posted. I'm new here and have admired all of the help and feedback here over the years for others.
Backstory, I had a full thyroidectomy due to thyca 11/14. I was started on 150 of Levoxyl and immediately felt manic like, highly anxious, hair loss (still have), and the worst, INSOMNIA. I've been on all meds and my last endo had me all over the place that I honestly don't know which route to go. I just know that I am miserable.
I am currently on 163 of Synthroid after gone up from 150 mcg back in December after being redcued from 175 my last endo really had me up, down, up down, etc). Still lots of hypo symptoms such as lethargy, HAIR LOSS, irritable, lethargy, moody, etc, however, I genuinely have no idea how I feel anymore as I know symptoms can overlap. I just know that I don't pursue my life nor friends because I have no energy, and i don't sleep at all (which I'll go on in a moment).
An endo I liked that I saw in the New Year suggested I lower to 125 T4 and add 10 of T3 but I was seeing one of the country's top hospital's staff shortly following so I didn't want to askew any labs by changing (that doc was a joke). Per a few recommendations, decided to get a second opinion from a second endo just a week ago as the idea of lowering scares me, but I just wanted to see if his review mirrors the other doc mentioned. For one, he took a huge thyroid panel without me even having to make mention and that made me hopeful. However, I have to wait two more weeks of hell before I can see him for a follow up.
However, I had labs done 2x in that week, one by the endo I had liked and a set prior by my integrative family PC.
I would like to share:
2/15/17 labs taken at 2:30 PM taken by my integrative doc:
TSH: .36 (range .45 - 4.5)
FT4: 1.04 (.82 - 1.77)
FT3: 2.30 (2.0 - 4.4)
RT3: 15 (9.2 - 24.1)
TPO AB: 7 (0 -34)

2/21/17 labs taken at 8:30 AM (T4 medicine taken 30 minutes prior):

TSH: 1.96 (0.45 - 5.33 uIU/mL)
Free T4: 0.89 ng/dL (0.61 - 1.44)
Free T3: 2.9 (2.5 - 3.9)
Total T3: 129 (87 - 178)
Total T4: 7.0 (6.1 - 12.2)
Cortisol: 21.0 (4.3 - 22.4)
Vitamin D, Iron, B-12: all really good

So that TSH is VERY contradictory! That latter lab has had false positive reads about TG prior but that seems like somebody else's blood, nah? The .3 seems more apt but since the summer, and being on 150 of Synthroid then, my TSH was at .0, and almost throughout all of the process with exception when I had switched from Naturthroid back to synthetic then did it jump up. My resting BPM is always about 64-67, my morning temp is usually 97.4, and I don't feel hyper at all. My hair loss is so extreme that I am so devoid of emotion. If I'm hyper it's not in the physical sense; no weight loss, more bloated, fatigued, no palps. Not much appetite except more junk once I do. Can't stay calm, just very depressed and anxious. Maybe if anything, at night when laying down my heart feel a bit irregular, like its working harder, not faster. I am quick to bite as I am vey irritable and like I said, I have no energy at all. The ONLY time I feel like me is about 9 pm at night and it's like this heavy shroud has lifted but my body feels as if just gotten beaten up so badly. I am only in my mid-30s y'all, and I used to be the most vivacious, most energetic person, ever. I get bad depression and anxiety now and the sleep... the sleep is the WORST, ever. I don't get into REM and when I feel like my body wants to snap into a deep sleep, I feel like brain isn't connecting to my body and my chest feels hot, I sweat, and it's like my body is fighting itself to stay asleep and I am jolted awake. My eyes burn and they literally want to stay closed throughout the day as they hurt so bad. Yet somehow, I am still alive after all of this time. Again, I feel like myself only as of late evening. It's like the medicine is weaning off and I feel like myself again but then feel like hell in the morning. I can't nap AT ALL and of i atempt to, it's for maybe an hour and I feel physically worse and more ill. Hell broke loose due to RAI prep (no thyrogen, borderline myxedema coma, remaining tinnitus) but I shouldn't feel like this. This all started following RAI and starting levo (and even on NDT and other brands it has remained the same).

I am hesitant to lower T4 as I felt scarily worse on a reduced amount in the past but I am ready to really get better and put as much as I can of this behind me. I don't feel hyper yet maybe my symptoms are paradoxical, who knows. Pre-RAI it was 120 and I was running just as much at the gym, go figure. My FT3 has always been in the crapper and Cytomel doesn't make me feel as alive as it once did. Any thoughts if I'm on too much? Too little? I feel like a magnet and the walls are a magnet and I'm a magnet but I don't laugh anymore. The higher my T4 goes the more iron-clad I feel yet once I reduce it, in about three weeks I feel more temp changes and such, hypo... granted, the lowest I've reduced was 150 and one of the docs I've seen said that it was probably too much and my body has been so over-hyped on this. I am honestly just so confused. And scared.

I will gladly accept thoughts. I'm so sick of this two year strong misery, everyone. Just wondering if someone is seeing something I don't or has lived this. I feel like my light turned off and worried I won't ever get it back. I miss the old me and can't understand what is going on. I miss my life and I miss not being so high-strung and so so so exhausted and sleep deprived. When I say how I have to literally talk myself into accruing the energy to just walk into the front door of my house from my car? I mean it. Thank you all so much in advance.

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1 Response

Is this good advice?

You may want to get another doctor. Someone who will listen to you and not just arbitrarily put you on different meds. I understand having the problems with anxiety. I get that a lot and the insomnia is there too. In my case, I am not sure how much of that is from the other ailments I have and how much of that is thyroid. I do know the anxiety bit all too well and the mood swings too. Those happen and I go from being ok to wanting to cry just looking at my dog. Some suggest meds for anxiety, I don't know. I try to find other things to do with my anxiety and that usually includes a spinner of some sort. When that doesn't take care of it, I go for some chamomile tea or something similar. I find a good relaxing cup of herbal tea helps a lot. Also my dog helps me too in that he will lay next to me and just relax which in turn helps me to do the same. I don't quite know how much of this helps at all. Just want you to know you aren't alone.

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