To those who couldn't get well on Levothyroxine... - Thyroid UK

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To those who couldn't get well on Levothyroxine...

Lilacsocks profile image
15 Replies

Did you experience hyper symptoms at a higher dose or was it just the "numbers" were top high?

I am awaiting an endo app to discuss combination therapy, but I'm open to trying an increase in levo if I can resolve my current symptoms without causing hyper ones.

Thanks

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Lilacsocks profile image
Lilacsocks
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fuchsia-pink profile image
fuchsia-pink

I certainly never felt "hyper". I was just told my blood results were too high (assume over-range free T4) - and when I reduced it, (a) it made no difference to the blood results and (b) I felt dreadful - in particular, had pain in lower legs when walking which is always a sign for me that I'm actually under-medicated. I very politely refused to reduce further and eventually they tested free T3 ...

Then early last year,, I was briefly taken off combo - and within 2 weeks was feeling dreadful again - put on 2 kg; brain fog; puffy face; hair lost lustre etc [GP then happily restored the lio and all was well again]

So for me it was a simple issue of poor conversion put right by adding in some lio :)

Good luck with endo - let us know how you get on x

FancyPants54 profile image
FancyPants54 in reply to fuchsia-pink

How much T3 do you take? Are you a 10mcg girl?

fuchsia-pink profile image
fuchsia-pink in reply to FancyPants54

I was started on 40 mcg lol which I took straight away as two well-spaced tablets - no "low and slow" for my endo!

But this was quickly adjusted - and now I'm pretty happy either on 75 mcg levo / 10 mcg lio or 50 mcg levo / 20 mcg lio ... [currently on the latter dose] ... but we're all different so it's really a question of finding a combo that works for you :)

FancyPants54 profile image
FancyPants54 in reply to fuchsia-pink

I know we need to find our own dose. But it's interesting to see what others are taking. I can't find my best dose. Today has been so bad. I can hardly drag my legs around. Physically exhausted all day. 40mcg T3 in one go! Blimey. That was a big dose. I'm currently on 25. I think my problem is that my T4 is being lowered so much by it.

fuchsia-pink profile image
fuchsia-pink in reply to FancyPants54

I'm sorry you're having problems.

My initial dose was utterly bonkers. I think I must have the gut of a rhino - or he was setting me up to fail (which didn't work haha so I'm the winner there :) !)

Have you tried adding more levo to the mix? That should increase free T4 levels and some of it must surely convert to T3 as well.

FancyPants54 profile image
FancyPants54 in reply to fuchsia-pink

I did, but it made me feel more hypo. All I can think is that having the T3 there converted the T4 into an inert form and got rid of it. I think I'm in a poor position in that by FT3 and FT4 are below half-way in range and so nothing is working properly and raising either is just making the other worse. It's like I need to get over a threshold, but I don't know how to do it. I'm currently on 25mcg T3 a day. Will retest in 2 weeks ahead of Endo visit. But adding the extra 5mcg hasn't helped me. I could have fallen asleep at any point today. I've yawned so much my face hurts.

Lilian15 profile image
Lilian15

I believe there is only so much levothyroxine one can tolerate before it starts to produce RT3 which is then counter productive to someone who does not convert very well as it is. I am not saying that is the case as I am only a patient, not a doctor. But what happened with me is that however high the T4 went, I still did not improve and my T3 was still below range. I am better on an average dose of levothyroxine combined with some liothyronine. I used to be great on NDT until a couple of years ago, when something seemed to happen to the NDT, or the way my body reacted to it, so back on T3/T4 now. Self treating as T3 had stopped being prescribed.

FancyPants54 profile image
FancyPants54 in reply to Lilian15

What's your T4/T3 dosage Lilian? Just out of interest (for me because I'm struggling to make headway with combo).

Lilacsocks profile image
Lilacsocks

I'd also be really interested to hear from anyone who feel well on levo with a TSh below range, T4 over range and T3 in range.

pennyannie profile image
pennyannie in reply to Lilacsocks

Hello again :

That was me - I was well with a TSH of 0.01 and a T4 slightly over range at 23.50 as this gave me aT3 of 5.50 which I found more acceptable but my dose of 125mcg T4 was reduced because of the TSH being too low.

When I started self medicating I tried this dose of T4 again but found the T3 of 5.50 wasn't sustained and my T4 rose higher this time around, and I didn't feel any better.

Having had RAI thyroid ablation and having " lost " my own natural T3 thyroid hormone production it stands to reason that you have, in effect, been down regulated by about 20% of your overall wellbeig.

I believe i remeber writing to you before, apologies if I'm wrong, but logically you need to replace both T3 and T4 thyroid hormones for balanced, consistent thyroid hormone replacement.

I've now switched to taking Natural Desiccated Thyroid whch contains all the same known hormones as that of the human gland, namely T1. T2 and calcitonin plus a measure of T3 and a measure of T4. NDT was successfully used to treat hypothyroidim for over 100 years prior to the medical science of the blood tests, guidelines, and ranges all introduced in the middle of the last century by Big Pharma as their synthetic option for treating hypothyroidism.

I'm with graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.

Lilacsocks profile image
Lilacsocks in reply to pennyannie

You have written to me before...Here I am still trying to figure it out. Thank you for your response, I am the same hypo post RAI in 2008. I am thinking the next step might be T3 for me but I am a little nervous about it (!) After reading some peoples experiences. I also suffer with a anxiety and I regularly get myself into a panic thinking I'm over medicated when it's actually symptoms on anxiety. They sound so similar on paper!

pennyannie profile image
pennyannie in reply to Lilacsocks

Well yes,

I too get some mild anxiety sometimes but see it as part of my " lingering Graves " symptoms - who knows.

Do you have the Thyroid uk list of recommended endo's, specialists and doctors who are more likely to support you with a thyroid hormone combo of T3 / T4 ?

You can't go ' hyper " again, you haven't a thyroid, you may experience over medication but it's not the same thing at all and easily resolved " if " it ever happens.

Lilacsocks profile image
Lilacsocks in reply to pennyannie

Why did you choose NDT over the synthetic ones? Did you try the T3/T4 combination? Do you mean hyper would feel different to over medication?

Also it's not a endo off the list but it is someone I saw in pregnancy who said come back and he him when I wasn't pregnant and we can try T3, hopefully he sticks to his word!

pennyannie profile image
pennyannie in reply to Lilacsocks

Yes I tried a synthetic T3/T4 combo and ended up over dosing myself :

I also couldn't sustain UniPharma T3 which suited me, and the replacement T3 I purchased in bulk gave me awdul headaches I couldn't tolerate and gave it away.

I found NDT much softer on my body so now been on this option for over 3 years.

You have had RAI thyroid ablation and your thyroid disabled and burnt out on situ :

You will not become hyper as once before.

On finding your optimal dose you may have mild uncomfortable symptoms that can be rectified and gone within a few days with an adjustment of your medication.

FancyPants54 profile image
FancyPants54

I never felt hyper. Too much Levo makes me feel more hypo. I think it just reduced my already poor conversion further.

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