Levothyroxin update. : It’s been about 6 weeks... - Thyroid UK

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Levothyroxin update.

NickP1 profile image
17 Replies

It’s been about 6 weeks now since going from Nature Thyyroid, couldn’t adapt to it after WP, over to Levothyroxin.

Side affects so far. Lethargy, extreme joint pain, can hardly walk when stationary for more than 30 minutes or so. Mild depression, constant feeling of slight anxiousness. Was walking 20 to 30 kms over a weekend before levo. Couldn’t manage 3 last night, joint pain and lack of energy. Slight brain fog. Eyesight not so clear. Lack of interest in anything. Outer eyebrows thinning. Psoriasis spreading.

I’m on the same dose of levo as before going over to NDT. I don’t have a clue what to try next.

Apologies if this sounds negative.

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NickP1
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17 Replies
bantam12 profile image
bantam12

You need to check your levels before giving up on Levo, maybe you are still adjusting to the change.

NickP1 profile image
NickP1 in reply tobantam12

I hope that is the case, if you don’t have quality of life what’s the point.

Naomi8 profile image
Naomi8

I went from thyroxine(16 years) to T3-only(2 years) to Naturethroid.Now on Thiroid.

Thyroxine dose was 125 mcgs for many years.T3 was 55mcgs.

On 3 plus a 1/2 grains Thiroid.After reading on STTM website about problems with NDT,it seems many need a much higher dose than the calculated equivalent.

Have you tried T3?I only stopped because of hair loss.Should probably have just reduced dose,but decided it was good to get some T4.

Very shocked you could not tolerate Naturethroid after WP.I think Naturethroid is quite weak.

Will you be able to go back to WP at some point?

NickP1 profile image
NickP1 in reply toNaomi8

Hi.

Not tried T3 only.

I would go back to WP. But I’m unhappy to support a company ie RLC labs, that has not thought through how it’s actions have affected thousands of people who relied solely on their product for quality of life.

greygoose profile image
greygoose

How much Nature Throid were you taking? And how much levo did you go onto? How well do you convert?

NickP1 profile image
NickP1 in reply togreygoose

Hi Greygoose.

I went from 1 1/2 grains of WP to 1 1/2 grains of NT when WP ran out. I assumed they were of equivalent strength.

I got to the point of not knowing which way to turn and made the decision to go back to levo after feeling very ill.

I started back on 150 of levo about 6 weeks ago.

I’m not sure on my conversion. I do know when I took levo before the blood results always came back ok. But my symptoms were similar to now.

I’ve just spoken to my local GP by phone, he’s very understanding, suggests I need to find endo who understand different issues re conversion etc. Amazingly my GPs receptionist pushed though a blood test for tomorrow morning after understanding it was for thyroid issues. Her mum had hashimotos, suffered quite badly from it.

greygoose profile image
greygoose in reply toNickP1

It's not difficult to tell if you convert well or not. You just compare an FT4 reading with an FT3, both taken at the same time.

What surprises me is that you didn't go onto T4+T3 when you stopped NDT. It's difficult to work out comparisons of doses between T4+T3 (NDT) and T4 only, because it all depends on how well you convert. But, going from 1.5 grains of NDT to synthetic T4 + T3 would be easy peasy, so to speak.

NickP1 profile image
NickP1 in reply togreygoose

Thanks again for the reply.

I felt so ill when I went from NDT to T4 I didn’t want to try anything apart from T4 in case I made it worse.

How would it work to add T3 if I’m on levo only at the moment. I assume you start very slowly and build up. But which final ratios would you need.

greygoose profile image
greygoose in reply toNickP1

I don't believe in ratios. You need what you need. I take 62.5 mcg T3 and 50 mcg T4. I don't know what ratio that is, and I don't care, because that's what I need. And you need to find out what you need.

Start with getting your levels tested - FT4 and FT3 - to get a rough idea where to start.

NickP1 profile image
NickP1 in reply togreygoose

Tomorrow am bloods. I’ll go from there.

So just a suck it and see for T3.

And a little less or little more for T4.

greygoose profile image
greygoose in reply toNickP1

Yes, depending on the results. :)

sianbarn profile image
sianbarn

Hi Nick,

Sorry you are feeling so poorly.

Teva levothyroxine ? I had awful joint pain , lethargy etc changed brand to mercury pharma . Felt a bit better, then realised I had poor conversion to T3, so started on Metavive 1(no nasty fillers), 1per day for 2 weeks, then 2 per day for 2 weeks, 3 per day for 2 weeks, retested... then went back to 2 per day plus my usual dose of Levo. Felt a bit better again, now tested positive for parasites!! So dealing with that now...

it feels like a long journey... I hope this helps..

all the best

NickP1 profile image
NickP1 in reply tosianbarn

Sorry to hear.

It seems never ending.

It’s been nearly three years since the TT thought it would have been sorted by now.

Naomi8 profile image
Naomi8

Nick,is it possible you did not convert Naturethroid as well as WP?I was on 125mgs thyroxine for years.Always had hypo symptoms,though bloods"in range"& "normal"according to NHS GPs.Am convinced i needed some T3 due to impaired conversion.

It sounds as if you were hypo on thyroxine & if it felt the same,hypo on Naturethroid.I feel better on Thiroid & so is my pocket!Many on the forum seem to do better on Thiroid.

STTM says folk are not upping their dose enough or quickly enough on NDT.I was well on a much higher dose of T3 than the equivalent thyroxine,ditto on Thiroid-100mcgs thyroxine equals one grain,so I am in theory on the equivalent of 300 mcgs!Sorry can't do links,see the NDT page on the STTM site.It sounds like you need more T3,whether within NDT or the combo.

If taking T3 you need to start small ie 5mcgs at a time & drop some thyroxine before.

Many seem to do well adding 25mcgs T3 daily to a reduced thyroxine dose.

I started on the combo(75mcgs T4,25mcgs T3,before moving on to T3-only.

NickP1 profile image
NickP1 in reply toNaomi8

Hi Naomi,

I think I was possibly under medicated on NT, as was suggested on here.

I couldn’t bring myself to increase at the time, I had a few episodes of BPM hitting 150 and a feeling of extreme anxiousness. it concerned me that I could make it worse. I assumed high bpm was a sign of over medication.

I’m waiting for blood results and will take it from there as far as dose and T3.

Naomi8 profile image
Naomi8 in reply toNickP1

STTM has a few things to say about issues when trying to raise NDT-eg low iron & cortisol issues.

When I started T3 after 16 years on thyroxine,I added 5mcgs of T3 three times a day for 3 days,then had an attack of tachycardia.I had these occasionally on thyroxine,but these were still going after 5 hours & I can only lie completely flat when this happens.Duty GP said go straight to A&E.Kept in overnight for obs,tachy resolved after 9 hours.

Left it 3 months,then started T3 again,but lowered thyroxine 2 weeks before.Then went on to have to very good years on T3,without any tachy.tachy was why I reduced the thyroxine to zero.I don't use thyroxine because of tachy.Outpatient tests,monitor etc confirmed supraventricular tachy,NOT atrial fibrillation,luckily.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test FT3 and FT4, plus vitamins

As you have Hashimoto's are you on strictly gluten free diet?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 or NDT don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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