Underdosed to overdosed now confused: Hi All... - Thyroid UK

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Underdosed to overdosed now confused

wittykitty profile image
13 Replies

Hi All,

First time posting here, I am a newbie I would greatly appreciate comments on my labs and possibly direction moving forward. As you will read I have been all over the place with my dosing. My hormone doc does not believe in small adjustments.

*(2/12/20) I was taking 135mg Armour (90mg AM/4PM) + 37.5mcg t4, 6 hours post dose (My hormone doc requires 5 hours, I do 6). On this dose I had a little more energy and was sleeping well.

tsh 0.01

(0.4-4.5), ft4 1.7 (0.8-1.8), ft3 4.9 (2.3-4.2)

*Prior labs)12/16/19) were 6 hrs post dose 135mg Armour (same split) + 6.25mcg t4

tsh 0.01

(same ranges), ft4 1.1, ft3 4.0

This dose I felt awful, sleeping poorly and beyond exhausted. Since the conversion is roughly 165mg I increased my Armour to 165mg and dropped the t4 to 18.75mcg, this would be about 180mg

My doc told me to increase my Armour to 180mg (he is not aware of the added t4 I am taking, he did not approve. Since my ft4 level has always been below range or barely in it I added it in November) and said to increase to 240 in 2 weeks. No way was I doing that. When I started with this hormone doc and his wife, they pulled me off of 75mg Armour + 42.75mcg t3 cold turkey and put me on 225mg Armour with an increase to 300mg in 2 weeks. That was too much and I lowered immediately.

Labs in July 2019 on 225mg Armour: ft3 8.6, ft4 was 2.2, suppressed tsh.

The next set of labs in August on 180mg Armour: suppressed tsh, ft3 6.5, ft4 1.6

Labs in Sept on 240mg Armour: suppressed tsh, ft3 8.8, ft4 1.9

At this point I dropped my thyroid dose, drastically to 105mg Armour. I know it was too much as I was very constipated and exhausted but I wanted the muscle wasting to stop.

Labs in Nov on 105mg Armour were: suppressed tsh, ft3 2.7, ft4, 0.6

The next set of labs were the first ones I posted.

This is longer than planned but here goes. I have been hypo since 2010 but my fatigue and symptoms started in 2004. I was diagnosed Hashis in 2017. I discovered STTM in fall of 2018 and thought I had figured it out. I was on 90mg Armour and had been bounced around from 60/90 every other day, 90mg doses and 60mg doses with my previous tsh doc. I increased my Armour every 2 weeks and was at 150mg when I started with the next doc. Long story short, I started the reverse t3 protocol in Dec 2018 with an Osteopath with Armour and t3. It has been downhill since then. Major muscle loss, squishy, loss of laxity. My body composition changed drastically quickly. I went from 137.7 lbs/17.7% bf to 144.7 lbs/18.7% by the time I started with my hormone doc in May. It does not sound like much but I gained significant weight in my torso/hips/belly. Developed cellulite and pock marked baggy skin. It was awful. Fast forward to working with hormone doc and making no progress, just gained more weight/fat got up tp 153.3 lbs/20.9% bf. This was on testosterone/progesterone and high doses of Armour. I was still losing muscle despite lifting weights daily. I never even got sore from my workouts anymore it was like it was burning off too fast to build it. I suspected it was too much thyroid hormone and other hormones. I was VERY ragey and emotional I could NOT control it, boyfriend had one foot out the door I suspect. Around week 4 or 5 on the 240mg Armour I got very itchy all over, sweaty, dry gravely eyes, muscle twitches non stop, achy joints, increased appetite, exhausted, feet burning/tingling, hands numb tingling, headaches in the evening. They had no answers for me just that it was not possible and I am wrong...I was living it! Oh and no period from July to Oct, which was blamed on aging and approaching menopause. I am 39 btw. I even consulted with their exercise/nutrition doc who reviewed my food logs, sleep and activity and told me to lift heavier and eat 667 cals less a day. I eat a very clean AIP diet for the last 2 years, and its not possible to lift heavier. Starvation diet was the answer, great, but no reason why my muscle disappeared. Within a month of stopping/lowering meds I was able to start losing weight/inches and body fat and am leaning up again. I am now down to 141.6 lbs/18.3% body fat.

Whew, bless you if you hung in here with me through all that! I am at a loss as to where to go from here. I am still having the hard heartbeat and slight shortness of breath since I was on those higher doses of Armour. It makes me uneasy. I need to settle in on a dose so I can hold for the 6 weeks and get accurate labs. I will be testing at 12 hrs post dose this time. So my ft3 will be a lot lower. I seem to be very sensitive to t3 anymore.

I am currently taking 90mg Armour and 50mcg t4. Does this sound like a good dose? I was on 105mg Armour with the 50mcg t4 but I still felt my heart. Honestly I have been going down every few days from the 180 doc put me on. I know my ft3 will be low hopefully I convert well and the t4 raises it. I wonder if I would do better on more t4 and Armour. These doses are lower total t4 than previous labs. Is more t4 warranted with my labs?

I have labs/doses when I was on the rt3 protocol if anyone is interested. Any advice/thoughts are very much appreciated :)

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13 Replies
Lalatoot profile image
Lalatoot

My first impression is that you and or your doc are micro-managing this too much. Dosing is a long and slow process. It takes the body at least 6 weeks to settle after dose changes which is why testing is not recommended before 6 weeks after a dose change. For some folks 8 - 12 weeks is a more realistic time frame. So to be testing as often and changing doses is not giving time for the full implications of dose changes to be known.

Overmedicated and undermedicated symptoms can be similar so we need to rely on blood tests to guide us.

You know the answer yourself as you have said that you need to settle on a dose and stick with it for 6 weeks. Do that and post blood results.

wittykitty profile image
wittykitty in reply to Lalatoot

Thank u for the reply.

I know hormone doc had me all over the place. They required testing every 4 wks for all hormones.

I learned real quick they have no grasp of female hormone management.

I do hold for at least 6 weeks. The last 3 set of labs on 105mg were 7 weeks, 135mg plus 6.25mcg were 6 weeks and 135mg plus 37.5mcg were 6 weeks.

135 seems to be too much t3 for me now as I am sensitive so I am wondering what a good addition of t4 to say 90mg Armour would be.

I do not want to overshoot it and I do want to go low and slow but not make myself more miserable than necessary. Fatigue is the worst. Thank you!

greygoose profile image
greygoose

I agree with Lalatoot , too many changes over too short a time. It's extremely difficult to follow and make sense of. But, one thing I'll tell you straight, your present endo is not going to make you well, he doesn't really know what he's doing and he's in far too much of a hurry!

Forget the rT3. It's irrelevant. One of the problems with STTM is that they don't move with the times. This idea that T3 'cures' rT3 is just rubbish. And totally unnecessary. rT3 will not hurt you. It's inert and only hangs around for a couple of hours before it's converted to T2. It's just a safety valve, not an evil substance intend on bringing you down. It's not even worth testing for. :)

wittykitty profile image
wittykitty in reply to greygoose

Thank you greygoose.

Yes I have learned that. We paid for a year with them though so thru the end of May. At this point I am just getting Rx refills from him. I have been doing the 6 week hold since I took things into my own hands.

I am settled in now just staying away from the higher NDT and trying to decide on t4 dose to add thats enough to make up for the lower NDT.

Again just do not want to make myself more miserable than I have to. This has been a long journey as most, started at 24 yrs old.

Yes I got all excited about STTM and have very different experiences and views now which they do not like me sharing. Its their way or no way and thats that.

No more rt3 nonsense for me since the beginning, I absolutely agree! I dont test that anymore for a while.

Their advice is too aggressive and excessive for most people in my opinion.

Thank u though!

greygoose profile image
greygoose in reply to wittykitty

I agree with you whole-heartedly about STTM! :)

wittykitty profile image
wittykitty in reply to greygoose

They threatened to put me on moderation because I stated I test at 12 hrs ( or did before starting with this hormone doc) and stated ft3 levels will be back to baseline after 18+ hours like they suggest testing. They also did not like that I was adding t4 to my NDT and that I posted about my bad experience with t3. I was "confusing" people and they had to go back and correct my incorrect replies and practices. It was insane, no one thing works for everyone. Of course when I did reply they had already put me in "time out" grown woman here, geez...anyway.

What are your thoughts the labs from Dec to Feb, if you can comment?

Here they are again, I went back and looked I actually was at this dose for 8 weeks.

*(2/12/20) I was taking 135mg Armour (90mg AM/4PM) + 37.5mcg t4, 6 hours post dose (My hormone doc requires 5 hours, I do 6). On this dose I had a little more energy and was sleeping well but I was also comparing that to the 7 weeks before on only 105mg Armour and was struggling a lot.

tsh 0.01

(0.4-4.5), ft4 1.7 (0.8-1.8), ft3 4.9 (2.3-4.2)

I bet my ft3 would have been 2.9 or so had it been at 12 hrs.

I have done so many break downs comparing t4 totals in various doses, I know thats not apples to apples comparison since you need to account for t3 and its 3-4x stronger.

greygoose profile image
greygoose in reply to wittykitty

Difficult to know what to think given that you didn't leave at least 8 hours before testing. (I am always very wary of doctors who want tests done so close to taking your T3/NDT - wary and suspicious! I don't know what they hope to learn testing that way). Your FT4 is high considering your on NDT - and would probably also be lower if you left the full 8 hours. Those labs don't really tell you anything useful.

I had one brief experience of STTM forum, and that was more than enough to convince me I didn't want any more! I think they're doing a lot of harm one way and another. I've heard some stories…

wittykitty profile image
wittykitty in reply to greygoose

Yeah I got super hopeful then realized it was more dangerous than helpful.

I have heard 8-12 hrs post dose testing so I will be taking my 2nd dose at 8pm then labs at 8am. But it 8 better? I know consistency is important.

They say they want to see peak levels getting up at 4am to take my pill then try to fall back sleep is rough!

Then last appt he says your level is your level all day its not the peak. Which I know is not correct.

They seem to have no upper limit on ft3 levels!

We paid a decent amount too... my bf gets TRT thru them they screwed me up big time with high high testosterone doses and progesterone. Kicking myself for letting it go on 4 months when my body was screaming at me. She just said "that means you need more" trust me I log symptoms and told her everything. Bf is doing great though so there is that!

Ft4 was always low or below range prior to adding the addtl t4.

I can say the t4 helped bowels a lot and thats been a steuggle since 2004ish. I was still constipated on 150mg Armour, 75mg Armour + 37.5mcg t3, 165mg Armour + 25mcg t3.

So that t4 been a godsend even a tiny amount.

I am wondering if I should just start over completely. I know on 60mg Armour only my tsh was 5.72 and my frees were tanked.

I do have plenty of Armour I can break down and 25mcg t4 which I can break down also.

I did the math on the 135mg + 6.25mcg dose = 91.75mcg t4/20.25mcg t4

The next one 135mg + 37.5mcg t4 = 123mcg t4/20.25mcg t3

Current dose 90mg + 50mcg t4 = 107mcg t4/13.5mcg t3

Not sure if too high.

Thank you for sticking with me with this.

I really am not this wishy washy usually :)

greygoose profile image
greygoose in reply to wittykitty

They say they want to see peak levels getting up at 4am to take my pill then try to fall back sleep is rough!

Yes, I know that's what they say. But, I don't see how that helps.

Then last appt he says your level is your level all day its not the peak. Which I know is not correct.

Oh, dear! That's not even logical. I do wonder if they actually believe all this rubbish they come out with. But I don't think they care enough to believe or disbelieve, they just make it up as they go along.

Ft4 was always low or below range prior to adding the addtl t4.

Yes, that's perfectly normal on NDT. And, for some people that's just fine.

I am wondering if I should just start over completely. I know on 60mg Armour only my tsh was 5.72 and my frees were tanked.

I know, that's very tempting. I would consider that, as well, in the same situation. But, it might be better to just continue the full six weeks on your present dose, test correctly and see how you feel.

Current dose 90mg + 50mcg t4 = 107mcg t4/13.5mcg t3

Not sure if too high.

Does it feel too high? It's not a huge dose.

Oh current issues...fatigue, flat mood, short term memory has left, foggy, lack of motivation, cold, feel slightly winded easily, hard heart beat, dry skin

And, they are all hypo symptoms, so I doubt if your dose is too high. But, you need the full six weeks to give it time to settle.

wittykitty profile image
wittykitty in reply to greygoose

Thank u for all this. I truely appreciate it!

Yes I have determined they really dont know. At least for women. My testosterone level was sky high. They said it was not.

Of course they wont admit their protocol was very bad for me. Symptoms were from aging.. What?!

Yes for someone who has to take lits of suppls to fall asleep it was very rough!

Actually last appt he said you have bern tired since 24 yrs old...u get that you will always be tired right? I was floored. Sure was not their service before the sale speech.

The addtl t4 was more to see if it helped I read here some people did better with higher ft4. But now that t3 seems to be affecting my heart beat/breathing Im trying to lower it.

Its only been 2 days on this dose. But I will stick it out for the remainder.

Interesting those symptoms were there on too much NDT. Minus the dry skin. But also the clearly overmedicated symptoms.

When I was very hypo b4 trying syn t3 I never had the hard heartbeat and winded that was since playing rt3 protocol.

I think some was too much testosterone converting to estrogen and progesterone to cortisol. Though they said no such thing as too much estrogen. Also had me taking pregnenolone high dose.

Its was mess thats for sure!

greygoose profile image
greygoose in reply to wittykitty

Well, it's good that you're now taking charge of your own health. Taking control is good for the morale, if nothing else. :)

wittykitty profile image
wittykitty in reply to greygoose

Yes, I agree since my Hashi diagnosis we have made a lot of diet/lifestyle changes. Got my gut sorted out, had undiagnosed dysbiosis and SIBO (misdiagnosed ibs-c and gastroparesis). We moved from big city in FL to the mountains in NC. Quitting that stressful police dispatcher job I did for 9.5 yrs was good start. Thankfully my boyfriend is not making me work.

I certainly am trying :)

wittykitty profile image
wittykitty in reply to greygoose

Oh current issues...fatigue, flat mood, short term memory has left, foggy, lack of motivation, cold, feel slightly winded easily, hard heart beat, dry skin

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