So achy & still exhausted : I’m upping my meds... - Thyroid UK

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So achy & still exhausted

Dee8686
Dee8686

I’m upping my meds slowly, but seem to be acquiring new symptoms along the way and the exhaustion has been horrid the last few days. Also I’m aware of my heart beating quite hard when I lie down.

I added levo (50mcg) to my 15mcg t3 nearly 5 weeks ago. Last test still showed t3 below half range. 3.4 (2.9-4.9)

Why am I not feeling ANY better? In fact I feel Worse at the moment.I don’t feel like I’m getting anywhere at all.

I used to be on levo only (only 25mcg) but never experienced aches or anything on it. Please help advise 😞😴

Thank you x

17 Replies
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So sorry for your suffering, Dee8686. From my hard experience, feeling worse suggests too much. Everything you’ve described happened to me when I had too much. The Liothyronine flushes our faster than the Levothyroxine — several days versus weeks — offering some relief by reducing Liothyronine. I’m finding you have to go by how the body feels, as the test ranges are as wide as the Channel, and an individual proper range is as wide as a kitchen table. Maybe an exaggeration, but it’s hard to hit the mark and doctors and tests have serious limitations.

Keep your courage and try to notice every subtle change and keep notes. You will see a pattern emerge.

Dee8686
Dee8686 in reply to RockyPath

There’s no pattern so far. I’ve been on meds. Off meds, on hc, this is the highest amount I’ve been on so far. I’m wondering if my levo increase hasn’t kicked in yet and my body’s desperate for the raise? . I’m hypo so don’t see how I’m on too much? X

Is it possible to go back to 25mcg Levo then increase dose of T3?

Hopefully someone more knowledgeable can come along & help. I take NDT & not been on Levo before.

For the aching are your Vit D, iron & Magnesium optimal?

Dee8686
Dee8686 in reply to Paula101

Thanks Paula. I wondered if it might be that the levo I added, hadn’t taken effect yet as takes 6 weeks to benefit from it.. maybe my body is desperate for a dose increase and not benefitting yet?

Supplementing all the above. My iron saturation is a little low at 21% at the moment so I know that’s a problem. Eating as many iron rich foods as possible! Ferritin is 68 though. Just iron and saturation not optimal.

Paula101
Paula101 in reply to Dee8686

Yes, I see what you mean.How long into your dose increase are you?

humanbean knows about iron. I can't add her to this post to notify her she's been mentioned, as I use a phone. Sorry about that. I need my husband to take a closer look at the healthunlocked app.

Dee8686
Dee8686 in reply to Paula101

That’s ok thanks. I’ve spoken to human bean and she’s been super helpful with my iron panel already x

5 weeks into taking levo...

Paula101
Paula101 in reply to Dee8686

Ok then😊well I hope the coming week brings you the relief you need. Sorry I can't help any further.

RockyPath
RockyPath in reply to Dee8686

Dee8686,

Any mineral supplements need to be taken 4 hours away from thyroid hormones, or the minerals will bind to your meds and prevent your body from accessing the Liothyronine (LT3) or Levo (LT4).

I’ve been on combined therapy for about six weeks after a trial of NDT for hypothyroidism. You can easily have too much and then feel exhausted but unable to sleep.

The biological half life of T3 is said to be <2 days and T4 as 6-7 days.

One study showed that serum T3 began to rise immediately and peak in the three-to-four hours post-dose time frame, with a fast fall after five hours and a slightly more gradual fall-off in hours seven to fourteen.

If you are exhausted and can sleep, that, I have found, is a more sure sign of not enough replacement hormone in your therapy. Too much feels confusingly like too little until you can start parsing the subtle indicators that doctors tend to ignore in favor of wildly imprecise lab results for free T4, TSH, and free T3.

A conservative Replacement Ratio is 10:1 Levo:Lio, per Italian Endo Society.

This thyroid system is enormously complex and medical texts on Thyroid used in schools today do not teach enough about treatment modalities and individual differences in replacement doses.

It’s a wasteland out there, but there are some books by thyroid patients that offer some signposts on the difficult journey.

Dee8686
Dee8686 in reply to RockyPath

I am sleeping like the dead at the moment but wake exhausted.. my results support that I need more meds.

thank you for your replies, although I’m agraid, much of it is quite hard to understand.

X

RockyPath
RockyPath in reply to Dee8686

“Sleeping like the dead” to me indicates one is starving for thyroid hormone. If you were lying in a heap unable to sleep, with heart racing, that would be indicating too much. With the ratio you are on, clearly your body is struggling with a more dire condition than mine, and I would agree with your sense of what you need.

All that levothyroxine could be converting to so much rT3 that you aren’t able to access the Liothyronine you’re taking.

If I couldn’t bear to wait weeks for professional help, I would make SMALL increases in Liothyronine each day (I take it 3 times a day) and watch closely for signs. Once your heart starts racing don’t increase for a week, so you can see where it leads.

“Half life” means that the hormones you can’t feel helping you are still partially present for up to a week, tapering off by halves each day. Meanwhile if you’re increasing the dose each day, the amount carried over also builds up. Hence the need to take it slowly. Hurrying with increases has unpleasant consequences that can feel much more frightening than being exhausted. But the excess will drain away in 48 hours if you don’t add more.

It’s like having a room full of unruly children with 10 more coming through the door every five minutes but only three of the early arrivals leaving with their mums in the same five minutes. When it gets too bad, you stop letting new ones in and wait for those still in the room to be picked up by their mothers.

That’s thyroid hormone transport simplified.

I hope you feel better.

RockyPath
RockyPath in reply to RockyPath

But in the room full of children analogy, levothyroxine is like tots who you’re obligated to care for whilst their parents are working on another country for six months. The rT3 is like a group of children with psychological problems that cause them go against your every wish and request. Whereas the free T3 is like happy children who help you in your work. It’s a long time before the room clears of the troublemakers. Compared to me, you are taking quite a heavy load of levothyroxine, and it’s unclear if it’s brought a mob of troublemakers into the room.

RockyPath
RockyPath in reply to RockyPath

But as a final thought, there is a broad gray area where the signs of too much look identical to the signs of too little.

From my wisdom gained from experimenting, it might be wiser to try a temporary large reduction in the Liothyronine, as you’re likely to feel a change over the course of two or three days. If things improve with less Liothyronine, then it would have been disastrous to have increased it.

And then there’s the hc component and inflammation, that will cause havoc with the conversion of the LT4 to T4, T3, and rT3. Few physicians will check your rT3, because they haven’t been taught about it’s function as a brake to T3 absorption on the cellular level. High reverse T3 blocks the cellular receptors, so they cannot access the free T3 that you need, and have in your serum (blood).

The Levo hormones you take have to go through conversion, and both have to reach open receptors on your cells in brain, muscles, other organs, attach to the receptors, and then commence a genetic conversion process that ultimately delivers needed energy.

Whew! A lot of work that nobody can observe, except the person who is feeling unwell and confused by the symptoms.

The rT3/Free T3 ratio might be helpful sign to seek out.

Your Levo:Lio ratio computes to 3.33 to one, which could be a veritable nuclear reactor dose, depending on the rest of your health factors.

Dee8686
Dee8686 in reply to RockyPath

Thanks but that’s all too scientific for me!

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Dee my experience is it just takes a while to work. I was on T4 only Synthroid up until last fall I started to go downhill feeling extreme fatigue very achy could not wake up just horrible some days not wanting to walk from my car into work . I also found most days I felt a little better by late afternoon . Anyway finally this spring a doctor added T3 to my T4 and it's taken 4 months for me to feel mostly better. I actually think it just takes a long time for your body to start responding. I was very frustrated the first couple months after adding T3 because I actually had a few spells where I felt worse! Now after adding the T3 4 months ago I have mostly good days. We are even considering adding a little more T3. I agree take notes everyday and you'll see a pattern. Also I've learned to take my temperature every morning with a Shakedown thermometer under my arm for 10 minutes before I get up. The integrative doctor I'm working with relies on temperature heavily to help determine how much T3 I need to add. Good luck!

I have found in my case pulse rate to be more indicative of what’s happening than body temperature, as my temperature is slower to respond than heart rate. I can use heart rate to “watch” the hormones going to work, like going to the shore for the weekend and seeing the tide ebb and flow on the beach. I found a Bluetooth fingertip pulse meter on Amazon and it has an app that works on iPhone or Android phones, so I have a record I can examine to see the patterns.

I take a microgram and a half of Liothyronine and wait four or five hours and see my resting heart rate has increased from 63 to 73. If I have taken too much, my heart beats at 80 or 90. A couple hours later, it’s back down.

There’s a fantastic amount of guessing and waiting involved in treatment and this makes me feel more in control of my situation. The endocrinologist and I can be partners in my care, instead of me waiting years for him to sort things out. I also borrowed a medical school’s Thyroid textbook and read up on how the gland functions, so it’s not such a total mystery, like the workings of a smartphone! I can get another phone, but I only have one thyroid gland for the rest of my lifetime.

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