Levo and Lio dosage advice please🙏: Hi wonderful... - Thyroid UK

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Levo and Lio dosage advice please🙏

Ankles profile image
11 Replies

Hi wonderful forum, I'm in a pickle, always in a pickle😛 please could I have some advice on dosages and next steps, please 😁.

23/1/23 first set of results given to private endocrinologist...

FT3. 3.8. 3.1-6.8

FT4. 20.5. 12-22

TSH. 0.54. 0.27-4.2

Was on 175mcg Mercury Pharma

Changed to

150mcg and added 20mcg Thybon Henning, to take every day.

27/3/23

FT3. 5.2. 3.1-6.8

FT4. 17.8. 12-22

TSH. 0.06. 0.27-4.2

Symptoms didn't really change, the only thing that changed, no heart palpitations anymore.

Private endocrinologist adjusted dosages

150mcg levo(kept the same) added another 20mcg Lio to make 40mcg, to take every day.

Still don't feel that much difference, tired, hands a bit trembly, bit more energy, but nothing significant.

Last set of results

3/6/23

FT3. 7.1. 3.1-6.8

FT4. 16.6. 12.22

TSH. 0.01. 0.27 -4.2

For me, I would have put my levo up and maybe gone to 30mcg , would you say the same🤔.

I have an appointment in a couple of weeks, so I'm thinking of cancelling and trying a new dosage, then do bloods again, then make a new appointment, I should have enough T3/T4 to do this, what do you think, please.

My vitamins were doing ok, up till this blood test, which again that will effect the effectiveness of thyroid meds.

No folate

Ferritin 190. 30-150

B12. 61.1. 37.5. - 188

Vit D. 114. 50-250

My globs keep going up each time also, it's 525. 0-115.

Sorry for long post, I have learnt so much fro you all.

There has been some really interesting conversations regards cortisol, do you think that i should do a cortisol saliva test🤔.

Oh also I started Evorel Sequi HRT patches, I don't know whether this makes a difference to vitamins.

I'm still taking thorn basic B , better you vit D K2, magnesium. Was having a fizzy vit c, would this result in high ferritin 🤔.

Endo did say if no change, to try NDT, it's quite expensive and I don't know how much I would need🙆

Think that's it, sorry a bit long today, hope everyone is trying to tolerate the nice weather, when it's cold we are freezing and when it's hot we are boiling.

Thanks for your perseverance

😘😘😘

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Ankles
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11 Replies
Lalatoot profile image
Lalatoot

Ankles you are making your adjustments too large. Changes in lio T3 are best done at 5mcg. That way you can home in on the dose that suits and it is gentler on the body.

It took me 2 years of small adjustments to find the doses of levo and lio that suited and after another 2 years on those doses things are still improving. So it can take a long time to find your doses and a long time for the benefits to be fully apparent. Change only 1 thing at a time so you know what is having an effect. Changing levo and lio at the same time just leads to confusion.

If those were my results I would reduce lio by 5mcg daily as the first step. I would then wait 2 weeks for levels to drop and then decide whether to reduce lio by another 5mcg daily. It would then be a case of waiting 6 to 8 weeks and doing bloods to see what effect the reduction had on ft3 and ft4. The reduction in lio dose will mean that your ft4 level will increase slightly.

Hypothyroid symptoms creep up on us gradually and they can also leave us equally gradually and its only by looking back that you realise they have improved or gone.

Ankles profile image
Ankles in reply toLalatoot

Thank you for your reply ☺️, I tried to say to the endo, regards the high dosage and he was like ' it's really not a high dose' then again when I went to 40mcg, again he told me it wasn't a high dose'. I know from reading advice that the best way is little at a time, but he dismissed it.

I kind of just did what he told me in the end.

So do you think stay on the 150mcg levo and start to decrease lio by 5 for 2 weeks then another 5. Then blood test, see the results and then if need be add more levo.

So hard

Thanks again👍

SeasideSusie profile image
SeasideSusieRemembering

Ankles

Was your T3 increased from 20mcg to 40mcg in one step?

If so your endo really doesn't know how to treat with T3.

T3 should be started at 1/4 tablet (5mcg or 6.25mcg if 25mcg dose tablets) then gradually increased in 5mcg doses.

I take Levo plus T3 (self medicate with the T3) so have a few years' experience of using the T3. and I know that for me it can take 8-10 weeks for any change in dose to be fully effective both in symptoms and test results.

3/6/23

FT3. 7.1. 3.1-6.8

FT4. 16.6. 12.22

TSH. 0.01. 0.27 -4.2

If these were my results I would be reducing T3 to get FT3 back into range, I'd reduce my 1/4 of a tablet and retest in 8-10 weeks.

As for your FT4 level and whether you should alter your dose of Levo, this is something that is quite difficult to determine. When on combination thyroid hormone replacement it is very individual where one needs FT4, some are fine with it low and yours would be perfect, others need it more balanced with FT3. Time, patience and lots of tweaking are generally needed, it's frustrating but worth taking the time to find the perfect doses rather than miss your sweet spot.

As for NDT, as it has a fixed ratio of T4: T3 of 4:1 then you don't have the flexibility of tweaking each dose to suit you as an individual. It does suit some people perfectly but there's plenty of us that didn't get on with it.

Your Active B12 needs to be around 100 plus so still some way to go there. Maybe add some sublingual B12 methylcobalamin to boost this, take one bottle alongside the B Compex and test when it's finished, see how it improves. Once the B12 is finished your level should be well over 70 and you should be able to stop the B12 and then just continue with the B Complex (remember to leave B Complex off for 3-7 days before any blood test).

Shame there's no folate result but as you're taking B Complex this shouldn't be too bad.

It wouldn't hurt to do a 24 hour saliva adrenal test, do one that tests cortisol plus DHEA, not just cortisol alone. This one is the one mainly used by members here:

Regenerus: thyroiduk.org/help-and-supp...

Ankles profile image
Ankles in reply toSeasideSusie

Thank you,

It's so complicated, I am going to cancel my next appointment and reduce lio like you said and get to 30mcg and then re test after 6/8 weeks. Then see where I am with levo, I feel in myself I need to add it back in, but like you all have said, one change at a time.

👍😁

SlowDragon profile image
SlowDragonAdministrator

were tests done early morning

Last dose Levothyroxine 24 hours before test

Day before test ALWAYS split T3 as 3 smaller doses spread through the day

Last 5mcg dose approx 8-12 hours before test

20mcg Was too high a dose to start on

Endo is changing dose to dramatically

Only ever change T3 by 5mcg at a time

And retest 6-8 weeks minimum after any changes

Are you gluten free or dairy free

Ankles profile image
Ankles in reply toSlowDragon

Thank you for your reply,Took your advice with taking levo and Lio before blood test.

Have to say, I don't find it easy to squish blood out of my fingers.

Gluten and dairy not free, but your right I should give it a go. I am eating healthy as always trying to loose weight.

I should have enough prescription T3 to reduce and then do another test, then make an appointment to see endo. I did say to him these are big doses to start with, but he dismissed it🙆.

I was thinking that the 40mcg was such a high dose, but is having really no effect, could I have cortisol/adrenal issues, or have just gone over the sweet spot.

Thanks again for your reply

🥰

SlowDragon profile image
SlowDragonAdministrator in reply toAnkles

Would suspect you started on too high a dose …and missed your sweet spot completely

Starting on 5mcg is what we always advise here …..and all four vitamins optimal first ….and frequently necessary to be gluten/dairy free too

Chunipet profile image
Chunipet

Hi

I note that you’ve had some sensible advice re levo and lio but I thought I’d chip in re the hrt. I’ve been fine on all three until last month - my gp suggested using hrt spray instead of tablets (possibly safer). Over the following two weeks I became seriously unwell with every symptom of being over medicated from my thyroid meds. I wasn’t absorbing the hrt through my skin and this effectively meant I was on too high a dose of lio (the palpitations were quite frightening). I immediately stopped taking the lio for a few days, returned to the hrt tablets and slowly reintroduced the lio. It’s taken about four weeks to get stable. Hrt affects how much levo/lio your body needs so, if you’ve recently introduced hrt, it will have affected how much levo/lio you need. It’s all a bit of a juggling act!

Ankles profile image
Ankles in reply toChunipet

Hi sorry for late reply, your right it is a huge juggling act, to add in to the mix Jak inhibitors for inflammatory arthritis 😐. Which HRT were you taking, that caused the issues, I have patches as reading given information from members on the forum, they are better absorbed through the skin, rather than orally(as can interfere with Lio n levo).

I did have to persuade the GP as he wanted to administer gel and tablet first, but I asked for the patches, they didn't realise that there was a combined patch, so they had to Google. I have swapped over to chemist4u, they have been really good so far, regards delivery, queries, quotes for Lio/ndt. Royal mail have delivered all on time with no issues either 🤞.

I feel fine at the moment with the HRT🤞, only early days, just a few painful areas, but didn't last to long.

Things can change, need to sort diet out, next step and keep on top of my vitamins.

Worried about the high iron as not taking any iron tablets, don't think I'm eating that much iron rich foods, no red meat, no spinach. I've been on salad mostly🤔 unless fish cakes have lots of iron, have a bit of a craving for them 😂.

Thanks again for your reply, and letting me ramble.

🥰🥰

Chunipet profile image
Chunipet in reply toAnkles

Hi, The spray I was prescribed was Lenzetto - it was really easy to use and, as it’s absorbed thru the skin, you don’t have to worry about timing which you do with the tablets. I tend to react to skin gels and patches so have avoided them. I didn’t react to the Lenzetto but didn’t absorb enough of it either despite increasing the dose twice. Glad you seem to be getting on with the patches. Apparently hrt can affect the way thyroid meds are absorbed so you may need a higher dose of the thyroid meds when taking hrt. Good luck with your continuing journey to feeling better!

Ankles profile image
Ankles in reply toChunipet

Thank you so much 😊

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