Hopefully On The Right Course: I have dealt with... - Thyroid UK

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Hopefully On The Right Course

HeartWoman profile image
13 Replies

I have dealt with hypothyroidism and surgical menopause for several years. I did really well on oral estrogen and later put on levothyroxine when diagnosed with hypothyroidism and continued to do well until I didn't. Long story short I have seen several conventional and functional medical doctors for the last 8-9 years just trying to feel better. I had a small window wherr I felt great on estrogen and NatureThroid until it went out of production in the summer of 2017. I tried Armour and NP Thyroid and they did not work well for me at all.

Fast forward and I am now on 2 mg oral estradiol with 1 pump of Estrogel. I started seeing an endo about my thyroid. Although he seems to love the TSH, he will at least Rx T3.

My initial bloodwork when I went to see him was:

TSH 2.24 [.4-4.2]

FT3 2.7 [1.5-3.5]

FT4 0.9 [.6-1.5]

I was on no thyroid at this point after a very ugly attempt of trying NP Thyroid. I know it works for many, but not me.

He put me on 5 mcg T3 only...I didn't even mention T3. Unconventional, but I can appreciate that, since nothing else has worked.

The first week was a little bumpy, but the 2 that followed were really good and I was hopeful for the first time in a long time. Starting about the 3rd week on the T3 only, things started to decline and by the end of the 5th they completely unraveled, so he let me go ahead and get my bloodwork.

TSH 2.865 [.4-4.2] an increase

FT3 3.0 [1.5-3.5] a slight increase

FT4 0.7 [.6-1.5] a decrease

So he added 25mcg of T4 to the T3. The first week was actually not bad, even though it was too early to do much.

By the end of week 2 on that, I felt more hypo than ever. I am now close to 3 weeks and I can't take it anymore. So today I emailed and called my doctor and I was pretty pathetic, so he said to go ahead and raise the T4 to 50mcg and then test in 4-6 weeks.

My B12 is about as high as it can go in range, but my D3 could use a little more help. It is 58 and the range 30-100. I don't have current ferritin or folate levels.

It feels like the 25mcg T4 did more harm than good. So I am hoping that the 50mcg at least doesn't make things worse and hopefully starts improving my symptoms. Is that possible the low dose of T4 could have done that? I have a good diet and have gained 12 lbs. in the last 4 or so weeks. I am more anxious as well....I think because I am SO tired and trying to work full-time.

Does this seem like a good approach to finding a level that works for me? I know all the rules about taking it first thing with water only and so forth.

Thanks!

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HeartWoman profile image
HeartWoman
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13 Replies
Jazzw profile image
Jazzw

Hi HeartWoman

I miss Nature Throid so much. Armour just doesn’t make me feel as well although bizarrely my blood tests are actually better on it.

I think your new endo seems to have an abundance of caution. Not sure what he was hoping to achieve by only starting you on 5mcg T3 and (if I’ve understood properly, nothing else?).

So the introduction of more thyroid hormone, this time levothyroxine, was absolutely necessary. But again, a tiny dose—really quite odd. :-o

When we’re put on too low a dosage of thyroid hormones, it can be enough to switch off the last of our own thyroid hormone production but still not be as much as our own battered thyroids were making before the replacement hormones were started. So yes, it can actually make you feel worse.

You can’t top up a failing thyroid—it doesn’t work like that. So you aren’t going to feel lots better until you’re on a dosage that’s much nearer the right dosage for you. I think you’re several dose changes away from that—given the glacial speed your endo is going with this. Many here need at least 75mcg levothyroxine, often more. And with combi doses of T4 and T3, many ultimately end up on daily dosages that are between 75mcg to 100mcg levo plus 10 to 20mcg liothyronine.

I guess one positive is that you’re unlikely to miss your “sweet spot” going at this rate. Did he explain why so slow?? Don’t get me wrong, slow is good, but this seems really slow.

How much Nature Throid were you taking when that worked for you?

HeartWoman profile image
HeartWoman in reply toJazzw

Thanks for you reply Jazzw,It has been a while, but I think I was on 2.5 grains. I went thru the hardest summer of my life in 2017 while on NatureThroid and didn't miss a beat. I can't do anything about it now. I just hope I find something that works as well as it did.

I tried all kinds of doses of NP Thyroid and felt horrible. Not only did it feel different from batch to batch, but pill to pill. My body begged me to stop them.

I was surprised I was allowed any T3. I am hoping that when I get my T4 up, then I will be able to convert what is needed to T3. If not, I will need to be pathetic again. 😊 At least it is currently in a respectable place in the range. Now to get my T4 out of the dust so it can help.

What you stated is what I suspected that the super low dose was just causing me more issues than helping. I start the 50mcg dose tomorrow, so hopefully another day closer to feeling like me.

I keep envisioning that I will begin to wake up and come to life like the trees and flowers will be doing here over the next month or so.

Jazzw profile image
Jazzw in reply toHeartWoman

I think you’ll probably get back to feeling lots better once your dosages go up a bit—at the moment you’re still undermedicated so will have lots of hypothyroid symptoms. I love your idea of coming to life like the trees and flowers. 🌳 🌸

So 2 and a half grains—that was [counts on fingers] 93mcg T4 and 22.5mcg T3 equivalent. Now, converting NDT equivalency to levothyroxine + liothyronine isn’t an exact science—the way it’s been explained to me is that the hormones are “bound” differently in desiccated thyroid products. But you can probably see that 25mcg of levothyroxine and 5mcg of liothyronine is a long way from the levels of T4 and T3 you were getting in your Nature Throid. Your body was used to having lots more T3 so you might find you always need some added to your levothyroxine dosage.

Hopefully things are going to improve for you really soon. It’s been a long old winter here in the UK so I’m definitely looking forward to warmer and brighter days ahead!

HeartWoman profile image
HeartWoman in reply toJazzw

We have had a fairly mild winter here in my part of the US, but we have been known to have blizzards in March. I hope we don't this year.

gabkad profile image
gabkad in reply toHeartWoman

If it makes you feel any better, the trees need the moisture. In Toronto we are getting snow, then melt, then more snow and more snow. The trees will appreciate it.

HeartWoman profile image
HeartWoman in reply toJazzw

One more thing....if you had my numbers, would you feel like rubbish as well?

Jazzw profile image
Jazzw in reply toHeartWoman

I’m certain I would! (I’m on 3 grains (180mg) of Armour).

HeartWoman profile image
HeartWoman in reply toJazzw

That is a respectable dose! Doctors just can't understand why I feel so bad when I look so great on paper!

mistydog profile image
mistydog in reply toHeartWoman

IMO that's not great on paper, most people need TSH under 1 or even suppressed and T3 in the top quarter of the range so you've a way to go yet

HeartWoman profile image
HeartWoman in reply tomistydog

I agree, but doctors don't seem to understand that.

Batty1 profile image
Batty1

I think your starting to experience the lack of female hormones and thyroid hormones and its wreaking havoc on you… I had surgical menopause and was absolutely fine with estrogen tabs for many years and then comes thyroid cancer 7 years ago and suddenly my world just feels like a train wreck I think its mostly because my body is breaking down at an alarming rate since my thyroid issues and because my labs look “wonderful” doctors don’t see a maybe connection.

HeartWoman profile image
HeartWoman in reply toBatty1

Yes, I think I have been hypo most of my life My symptoms were manageable until my body completely crashed which affected every aspect of my life. I hope that I am finally on the way to recovering from this mess so that I can get on with life because I have a good one.

Batty1 profile image
Batty1 in reply toHeartWoman

I hope so too.

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