Weird labs, Still feel utterly rubbish, please help:

Hi everyone.

Been a crazy few past months getting tests done and such since I've posted. 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 on the country's top doc's 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.

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. 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. 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. 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. My eyes burn from fatigue but somehow I am still alive after all of this time. I also can't sleep, either. And 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 thr morning; sleep literally makes me feel worse. 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. My FT3 has always been in the crapper and Cytomel doesn't make me feel as alive as it 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... want t nap but my body will not nap. The doctor that wanted to lower said the reduced amount was still too high and I am honestly just so confused.

I will gladly accept thoughts once more. 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. When I say how difficult it is to just talk myself into getting my shoes on from lethargy and fatigue? I mean it. Thank you.

11 Replies

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  • The difference in the TSH isn't at all weird, when you consider the time difference. It's bound to be higher at 8.30 am than at 2.30 pm. And far from you being over-medicated, you actually need an increase in dose. Your FT3 is too low for you to feel well.

  • Personally I did not do well on Synthroid after doing 'OK' on Actavis Levothyroxine. One of my worst symptoms on it was mood swings. Maybe in addition to the dosage look at trying another brand of Levo (or moving to Dessicated thyroid). Good luck.

  • so wild! i didn't know if swings so much!

    i am literally beyond miserable. MISERABLE. i am so depressed because i can't sleep and i need a sleep aid to even get the small amount that i do. i raised the 13 mcg since december and feel a bit better but am extremely agitated and such. tired. my friends have stopped reaching out because they know i won't oblige to hang.

    my question, because i like to be prepared, is there an amount or a combo i should be inquiring about? i will say, i miss natural thyroid but felt manic on it. i looked skinny as hell which was nice, but that ratio. and now i feel too heavy. just EXHAUSTED and no sleep. i thought i've been overmedicated but this lab is the first where my TSH has fluctuated and my Ft4 was lower than being over the range for once.

    i appreciate all support and answers, thank you!!

  • and agreed, i'm on synthroid and feel i did best on a different brand, so i will be asking to at least swap that.

  • I asked for another brand but the doctor just gave me a prescription that said generic. All of the Levo brands that the local pharmacies carried had pretty much the same ingredients so I just gave up and sourced my own Dessicated thyroid.

    I'd asked a couple of different doctors about prescribing DT but got fobbed off, and in this instance I felt life was too short to have to go shopping around for doctors that know what they are talking about.

  • does anyone here awake with numb and tingling shoulders and such? i guess i'm trying to figure out if that's more hypo or hyper, too.

  • my results are similar, but you may have high cortisol which makes a weird test like this and causes fatigue, sleep problems,weight problems etc... have you ever did a 4x a day saliva cortisol test....the worse thing for cortisol is lack of sleep....and it is hard to sleep so I understand....my dr told me is If i increased thyroid meds I would be putting more stress on my adrenals and burning them out and I need to take things like holy basil, ashwangha , etc for calming and even melatonin at night and magnesium,vit c and b vitamins keeping b12 in the top of normal range, and to take vitamins b4 6pm so nothing keeps you away....get off computer earlier at night and depress b4 going to bed ...avoiding caffeine, eating better and not skipping meal and eating whole foods, omega 3....the list goes on....one of the best thing is rest...sleep 8-10 hours a night....the dr told me any vitamins that support thyroid need to be all in balance as well such as vit a, selenium, etc and that will also cause weird thyroid test like this with low tsh low normal ft4 ft3...

    it is easier said than done but I am still working on it....sleep is difficult, weight management is difficult etc bec it is like a catch 22...need to sleep, relax and distress and support your body to do so...

    sometimes this also throws off other sex hormones as well hence my dhea as at the bottom and testosterone and estrogen and progesterone.....

  • thank you!! i appreciate your kind and thorough response! i haven't done a saliva cortisol test yet my blood had me right at the top of the range. i honestly can't tell if i'm hypo or hyper at this point, really. i don't have a thyroid anymore and thyroid issues were t something i dealt with with being confirmed prior. so i do take all the vitamins and herbs... but the sleep thing is a constant. i don't stay asleep nor fall asleep. the higher my levo has gone has helped but i get thisweird feeling by evening, as if the medicine has worn off and i'm so fatigued and working out (even when starting off mildly) has me in a sweat and winded. just so confusing! and the mid section bloat? this is new but i'm guessing it's also being so fatigued. may i ask, are you on levo only? and has your doc raised it? i would love others and their experiences!

  • I am on nature throid but really no big difference. I also have the mid section bloat..i will say that if your progesterone and estrogen ratio is off in the body, you will not sleep and my dr is also trying to work that out using bio identical topical hormones....at first the added hormones I started sleeping again and had no night sweats and I was shocked at the difference but she changed the concentration on my estrogen and now I sleep every other night and battle insomnia...I take melatonin time released , magnesium, a probiotic, and sometimes a cold remedy just to try to get to sleep. it is very frustrating....so I have another visit soon and hopefully she will see where the inbalance is at. Also I was told that a blood test for cortisol is not as reliable as a saliva test hence I acutally ordered mine off amazon and took it and they emailed the results and I took it to the dr bec I had to wait 6 weeks to see the dr and didn't want to wait to be diagnosed. I had a combination of low ft3 ft4 and low tsh , high cortisol two times a day, and low hormones as well as low stomach acid causing the stomach bloat so taking enzymes with meals too.

  • so grateful for all of the help! i actually have a lab order for all the sex hormones that i need to get processed this week, so hopefully i have some more insight. and a follow up with the other doc monday... all positive juju! thank you again! please keep me updated on how you do?

  • I just wanted to add an update. I saw the newest endo recently and he wasn't too phased about the juxtaposition of labs (no surprise here!) but as mentioned, I am still awed by the TSH difference but mostly, how my FT4 on a lower dose was at top of the range, or higher, when at 150 or more, but lower during these. Anyway, initially he advised me to just go to 175. I recall being on even 200 for a moment last Spring and I think I felt even worse then now, hard to differentiate anymore, but I made mention how my FT3 is always in the crapper. He agreed that this can be why I am fatigued and I know all have been confident about this as well. So, he initially suggested I lower to 150 but add in 10 mcg of T3. I don't know why I was hesitant, but I feel like this is still a lot, no? So I asked about 137, maybe because I feel like I have a hunch or because one other endo I've seen recently wanted me even lower with T4 (at 125), but I ask about that. He agreed and said he would like me taking 15 mcg of T3 with that or 10 to start and guage how I feel.

    Today has been the first day and I'm not going to lie, I am deathly SCARED about any switch. I sense most understand this or relate at least. However, when I've reduced to 150 of T4 (as of six months ago), I found that to be utter HELL after three weeks. HELL. Maybe it was still too high or because I'm not converting just about anything (my FT3/FT4 ratio has basically stayed almost the same regardless of my T4 dose) but I'm really worried about this. I do feel that either I needed to either ingest like 188 mcg of Synthroid, but lately I've been wanting to skip a day of medicine because I feel like it is too much subconsciously. Who knows. I do think I am one that is having the paradoxical hypo/hyper symptoms but I know that regardless, something must change.

    Just wondering thoughts about this. I did 10 mcg of Cytomel today and I still felt like I needed a Red Bull! I can take 5 and not feel a thing, so maybe my body is that depleted. Wish I understood this weird science better!

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