New labs, advice appreciated: Hi all, I first... - Thyroid UK

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New labs, advice appreciated

wittykitty profile image
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Hi all,

I first posted a while ago and was on 90mg Armour plus 50mcg t4. I had to change my dose as my sleep was even worse, achy hands/joints, fatigue, super dry skin, short term memory loss, brain fog, no motivation, shortness of breath and constipation. I gradually increased my Armour and decreased my t4 dose to 135mg Armour and 12.5mcg Eltroxin. Ive been at this dose since early May.

Lab results/11.5 hrs post NDT dose and 24 hrs post Eltroxin dose:

Tsh 0.01 (0.45-4.5)

Ft4 1.1 (0.8-1.8)

Ft3 3.3 (2.4-4.2)

I still have all above symptoms except bowels are regular. I have tried taking more t4 but bowels get too messy.

I was VERY overmedicated by my hormone doc the last half of last year (up to 300mg Armour) so I am nervous about taking too much Armour. I have no symptoms of being overmedicated. I did have the shortness of breath when I was overmedicated though. Although I am always cold and beyond fatigued.

I still cannot seem to build muscle despite lifting heavy weights 5-6 days a week, 30-45 min sessions. Very clean diet. Whereas prior to taking t3 or higher doses of NDT (starting Dec 2018 until Sept 1019) I had no issues. But that was so long ago. I am rather squishy and soft, skin looks baggy and pock marked. Yet it was much worse when I was on much higher doses. I am at a good weight/body fat for my 5'10 frame (141 lbs/18.1 % body fat).

I have my yearly appt with my Osteopath next week, I am thinking of increasing my dose to 150mg. I currently take 90mg in AM and 45mg around 2PM.

Any thoughts? Thank you!

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fuchsia-pink profile image
fuchsia-pink

You may well feel better if you increase your meds. TSH is suppressed, but that's not unusual when you take NDT. Free T4 is only 20% through range and free T3 is better at 50% though range - but there's plenty of scope for both to be higher without you becoming over-medicated. I like both my "frees" to be at least 80% through range - you're a long way off this x

wittykitty profile image
wittykitty in reply to fuchsia-pink

I am thinking that too, its been such an up and down time of it though, the hormone doc and his wife have made me gun shy. They started me on 225mg Armour (when I was on 75mg Armour and 42.25mcg t3) and increased to 300mg in 2 weeks, but that was way too much for me so I lowered. Next round was 180mg because I asked to be lowered. Then it was 240mg and I was VERY overmedicated. It was awful and I lowered drastically myself and took myself off the excessive doses of testosterone, dhea and progesterone they put me on. I posted about all that before but it was a super long post to repeat here.

I worry also because the winded easily feeling/short of breath when exerting myself barely AND the extreme body composition changes did not happen until my Osteopath started me on t3. Its like my muscles are wasting. It was real bad on the high doses of Armour, like it was gone before I could build it. And I was on plenty of testosterone to counteract it. Its maddening.

I have been on Armour since 2010, every dose from 30 to 300mg and I cant seem to figure it out. Thank you for the reply though :)

DippyDame profile image
DippyDame in reply to wittykitty

It's important to remember that if you miss the therapeutic dose during titration then T3 begins to have a converse effect.

Your body must be struggling after so many hefty changes, it is also vital that increases are low and slow so that you don't miss your optimal/ therapeutic dose.

High T3 can/ will affect your muscles.

I seld medicate and ended up taking too much T3 (200mcg) but initially didn't realise this...and felt short of breath and rubbish. And, thinking I needed yet more T3 to sort this out! However gut instinct said 200mcg was overdoing it. So, I decreased back to 150mcg and still felt awful so ....not realising I might still be overdosed. I felt like you feel now....what to do?

I was self medicating because I had been previously told by a GP that they wanted me to stop all T3 and use Levo. The endo I saw was useless, he didn't even seem to understand very poor conversion. He said he couldn't interpret my odd diagnostic test of 20 years ago. I suspect he thought I was as mad as a box of frogs! That wasn't going to happened - levo made me ill in the first place! My conversion was very poor and I had low T3 which may be genetic.

A recent, unexpected, routine blood test at my surgery and a very concerned GP (herself a thyroid patient) threw the spotlight on the issue. They also identified a heart murmur which may or may not be connected but I await an echocardiogram.....no doubt in the far distance because of covid!

I stopped my T3 dose completely when I suspected overmedication, I hadn't realised that was a safe option

I then waited a few days (6) to clear most of the T3 from the system then started again on 50mcg for 6/8 weeks and will retest and proceed from there. I feel so much better but I suspect I'm going to need more but I'm better prepared this time!

I admit, I made a hash of it despite thinking I was in control and having done extensive "homework" but I'm sure I'm on the right track now. That GP saved me from myself and I've been hugely lucky to have been 'caught' by her because unlike so many others she understands the problems I faced.

I've had enormous help from members and this negative experience in no way reflects on any of them. Without their help and support I hate to think what state I would be in now. I could barely function when I arrived.

Mine is a long convoluted salutary tale involving issues I wish I'd known about over 50 years ago!

Good luck....there is a solution out there but I doubt you'll find it with your current medics who are rushing you towards failure! Take control!

Best...

DD

wittykitty profile image
wittykitty in reply to DippyDame

Oh yes, I realize I was on way too much t3 for me. I had been undermedicated for too long, my previous doctor would keep me on 60/90mg Armour alternating daily, she kept trying to push Synthroid but I was not having that. Of course she was going by tsh. I discovered STTM and saw a ray of light, started their protocol and was up to 150mg by the time I saw my new doc, the Osteopath. He had no issues with my suppressed tsh and agreed my ft3 was low. It was 2.8 (range 2.3-4.2) and free t4 was 0.8 (range 0.8-1.8) my rev t3 was 19 at the time which I bought into the STTM mess saying it needed to be a lot lower. Anyway, I asked him for t3 and a lower dose Armour. I felt way too stimulated on it though but of course was being told I was not on enough so increased. By the time I consulted with my boyfriend's hormone doc I was fatter, squishier and winded with a hard heartbeat. I remember the elevator being out of order before my appt and just walking up 4 flights of stairs I was almost hyperventilating. They cold turkey-ed me off the t3 and increased my Armour dose by a lot. That was May of 2019. Fast fwd to Sept of that year no period for 4 months and a list of side effects just just kept getting longer, I took myself off everything they had me on and dropped my Armour dose from 240mg to 105mg, drastic I know but I wanted it out of my system. I held there for 7 weeks and got labs done. It was a rough 7 weeks. Then I started increasing my dose gradually, 120mg still constipated and barely functioning fatigued so I went up to 135mg and have been holding here afraid to increase. The hormone doc wanted me to go up to 165mg then 180mg then 210mg in 2 more weeks. No way was I doing that. My year with them ended in May and I did not renew. My boyfriend even dropped them and did not renew to support me. It was a nightmare! I never wait so long for labs but the draw site near us has been spotty with open/close due tot he virus and the nearest actual lab is a 3 hr round trip drive. Thats utterly exhausting when you are exhausted.

I increased to 150mg yesterday and plan to hold here for 6 weeks then labs. I have no symptoms of overmedicated, except I am aware of my heartbeat and feel like I am open mouth breathing after walking up the mild incline in the backyard or the steps to the porch. Nothing like the actual shortness of breath. Its hard to describe. I have been away from those higher doses for over a year now.

I think I read 25mcg t3 and muscle wasting can occur, it might have been 50mcg. I work hard on eating well and staying fit, the one thing I can control totally since all this started in 2004, so seeing myself change so rapidly and not being able to figure it out was devastating to say the least. I cannot imagine being on 200mcg of t3, my heart was a mess on my previous stated dose, I did get up to 50mcg at one point but backed off. I also know when I was on the t3 and higher doses of NDT my fasting glucose/insulin and ALT were elevated and I had major cravings which I did not indulge, gained inches and fat in torso it was maddening! I told my boyfriend it would be different if I sat on my butt and ate cake all day, but I dont!

You sound like you have had a time of it, I am so sorry for what you have been thru. I hope you are on the right path now. My issues started when I was 24, major fatigue, zero libido, sluggish GI, and despite docs telling me this is your life, nothing we can do I keep trying. Diagnosed with gastroparesis, IBS-C, and CFS. Every diagnostic imaginable it seemed, major workups at Mayo Clinic, sleep studies ect. I was told I was just stressed. I tried prescription stimulants, sleeping pills, antidepressants, laxatives but I was not deficient in those things! Been to pain management specialists, GI docs, therapists, functional medicine, integrative practitioners, hormone docs, etc, lots of wasted money later and just another prescription. Ahhh, they just dont get it. I am pretty sure after my last experience with those hormone "specialists" I am done. Keeping my Osteopath for my Armour Rx pretty much. You do start to wonder if you are crazy though and they certainly dont help! At least the Integrative doc got my methane SIBO diagnosed and erradicated which I probably had over a decade. Its been a journey thats for sure.

DippyDame profile image
DippyDame in reply to wittykitty

I have a form of thyroid hormone resistance which is why I tolerated (not so well as I thought!) 200mcg. T3

I too had FM and CFS diagnoses....research suggests the latter can be the consequence of low T3!

Hope you find your way through this thyroid mess we get dumped in.....I was always convinced there was an answer it just took some time to find it!

Take care

wittykitty profile image
wittykitty in reply to DippyDame

Oh my, I hear abt it all the time but cannot imagine it. I am super sensitive to t3 it seems, even got a headache the first day I started it and with each increase, pretty severe one too.

Yes, I had poss fibro diagnosis as well, offered a med of course. I have also heard that. The fatigue is the worst and I would like to find my libido again. Boyfriend is super understanding thats for sure. I got it back for a monthish when on man doses of testosterone but I was super "fluffy" and did not feel sexy even a little bit.

Thank you! You as well, its sure a tricky one and there are many factors of course. Its rarely just thyroid when its been going on for so long. Lots of imbalances to sort out.

You also :)

Timsywhimsy profile image
Timsywhimsy in reply to wittykitty

Hi, so I’ve been reading some of your posts and I feel so bad for all you e been through. I bought into the STTM myself and worry now if I’ve done permanent damage. Even a year off high doses I developed an arrhythmia—will never know if it was caused by being overmedicated for a year. I have read that hyperthyroid patients are at higher risk for all sorts of heart problems for 20 plus years after treatment! That’s kind of a wake up call. It worries me that you still feel a little breathless and feel the hard heartbeat—if you feel like you’re muscles have wasted, imagine what could be happening to your heart. Perhaps you should see a cardiologist and get checked out.

I know it’s different for everyone but I’m really starting to think less is more with hormones. Maybe you were allergic to something in levo all those years ago and that’s why you think you do badly on it. Maybe try tirosint and some cytomel?

I also find I can’t tolerate cytomel like I used to—I just take a tiny dose now. Maybe it’s our bodies way of saying too much! You know I’ve heard the heart is a great converter of t4. Maybe that’s why it seems to be so sensitive even if the rest of our bodies are feeling tired.

Anyway, hope I’ve helped some. Wishing for everyone dealing with this to find their happy, healthy place!

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