Help please! I'm have to switch from NDT+Lio to Levo and Lio :-(

[The-Wasp]

Hey thyroid buddies

This is probably a question for one of the more experienced members.

So I need to move to Sweden and I'm very sad to say that this means I'll need to switch from Erfa to Levothyroxine and Liothyronine.

There's very few endocrinologists in Sweden who prescribe NDT and you need to go through an arduous annual approval process to be stay on NDT even if you find an endo willing to prescribe it. I think the uncertainty of staying on Erfa+Lio will be too stressful for me. I've felt so great on Erfa so I'm really sad about it. The wait for a private endo in Sweden is at least 6 months for the more patient centered ones.

My current dosage: Erfa 90 mcg in the morning and Erfa 60 mcg in the evening as well as 5 mcg Liothyronine twice per day. My endo had also recently added 5 mcg Liothyronine twice per day to the Erfa because he felt I was still a little undertreated on the Erfa alone.

Is there anyone who can help me figure out approximately how much Levothyroxine and Liothyronine would be the equivalent of Erfa 90 mcg (morning), 60 mcg afternoon and Liothyronine 5 mcg twice daily? The Liothyronine was a recent addition because my endocrinologist felt I was a little undertreated on the Erfa alone.

I have previously been on 100 mcg Levothyroxine (a long ago), but I was undertreated at that time and still had severe hypothyroid symptoms. What I don't know is how much Liothyronine I should have as a starting dose or how to titrate it? It could even be that I mostly need Liothyronine because I didn't seem able to convert the T4 to T3 on Levo. I've even heard of some people only using Liothyronine? H

Last time I transitioned to a new thyroid medication, the endocrinologist started me on way too small a dose and I developed very severe pelvic floor issues until the dose was titrated so even if find an endocrinologist in Sweden before my Erfa runs out, I don't want to be completely clueless as to good starting dose of Levo and Lio. I've learned the hard way to try to be as informed as possible before finding accepting a new treatment plan because being undertreated has caused me a great deal of suffering in my life.

I've been on Levothyroxine 100 mcg before and was basically disabled by severe hypothyroid symptoms so I'd like to know as much as possible before I'm pushed around by endos and GP's in Sweden.

So that's my current situation. I'd really appreciate any help or advice you're able to give me.

[Regenallotment Ambassador]

Why not get on the waiting list in Sweden and use your current source to stock up before you go? Once you find what works, it seems worth fighting to stay on it 🌱

[The-Wasp in reply to Regenallotment]

I have to be in Sweden with a Swedish personal number before I can get on insurance before I could be put on a waiting list. I'll still be here for awhile and the uncertainty of having to get approval every year is going to be too much stress for me to handle. Levo and Lio may very well work okay for me. Prior to Erfa, I was on 100 mcg Levo and 5 mcg Lio and had no negative side effects. I think I probably didn't have enough Liothyronine though (and maybe not enough Levo either) because I didn't know how to interpret my thyroid tests until I read The Thyroid Pharmacist and joined this group (at which time I began taking Erfa). I think I should probably start with 100 mcg Levo and the two 5 mcg Lio I'm already on. Then I think I can increase the Lio by 5 mcg every two weeks until I'm on the correct dose. I'll need to read up and talk to as many people as I can before I can be sure what to do). I've been in touch with a thyroid group in Sweden and they said that things have gotten really bad for patients on NDT and they're often forced to switch to Levo alone without much notice at all -- on Levo alone, I'd probably get swollen blue arms (a former symptoms I had for 15 years), severe insomnia, etc. etc. I was on Levo alone for a decade before I learned how badly I was let down. The symptoms would be very severe.

[radd]

The-Wasp

1.5 grains (57mcg T4 + 13mcg T3) + 10mcg T3

Approx 57mcg T4 + 23mcg T3

Difficult to get a 57mcg Levo tablet but you could medicate something like 50mcg Levo + 20 or 25mcg T3.

I have found NDT to work more sympathetically as synthetic T3 was prone to giving me a bump. You are already splitting your dose which is good but you might find the hormone bio-equivalence working in slightly way because NDT hormones are bound to thyroglobulin. Therefore, the estimations I have given cannot be said to be the definitive equivalence.

Good luck with the switch.

[The-Wasp in reply to radd]

Thank you so much for your response! Really sweet of you to take time out to help me

[helvella Administrator in reply to The-Wasp]

If you wanted slightly more T4, half a 75 (37.5) and add a 25 = 62.5. Though 75 are less available there are, I think, at least three makes now in the UK.

[The-Wasp in reply to helvella]

Wow, great! Thank you so much 😃 I have a bit of time to decide so I think I'll also go onto your blog as it would be so empowering to be able to do this sort of calculation.

[The-Wasp in reply to helvella]

Hey Helvella! Was this for 2.5 grains Erfa and 10mcg Liothyronine? Just thought I'd double check because my original post might've been confusing. I'm on 2.5 Erfa and 10mcg Liothyronine with my afternoon dose of Erfa. When I tried to calculate this myself based on one grain of NDT being 38mcg, the total T4 came to 114mcg and the T3 came to 37mcg (with the 10mcg Liothyronine. I found these numbers on the Health Unlocked website. Sorry if this is confusing!

[The-Wasp in reply to radd]

Hey Radd! Just want to triple check my own math. So it was probably confusing with the way I wrote my question, but I'm actually on 2.5 grains of Erfa and a total of 10mcg Liothyronine (as also take one grain of Erfa in the afternoon). Does that mean 38mcg times 3 of T4 and 27mcg of T3? The breakdown on the Thyroid Unlocked website was 38mcg T4 and 9mcg T3 in each grain of NDT. That was the first breakdown I came across of how much T4 and T3 is in each grain of NDT though I would imagine there are probably different interpretations and slight variation in the types of NDT. So wouldn't that break down to 114mcg of T4 and 27mcg of T3 (maybe split in two)? Just doing a sanity check here as I'm completely new to all this.

[helvella Administrator in reply to The-Wasp]

Attached image is specific to Erfa. I hope I have interpreted your reply correctly - you are taking 2.5 grains in the morning and another one grain in the afternoon - making 3.5 grains?

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).

📄 dropbox.com/scl/fi/gx6dmz5i...

Calculated T4 & T3 in Erfa doses

[The-Wasp in reply to helvella]

I'm sorry, no, 2.5 grains of Erfa and 10 mcg Liothyronine

[The-Wasp in reply to helvella]

Thanks so much, Helvella! The chart helps a lot.

[The-Wasp in reply to radd]

Sorry, I thought it would be 37mcg T3 and 114mcg T4 with 2.5 grains NDT and 10mcg Liothyronine.

[radd in reply to The-Wasp]

The-Wasp

Yes, my calculations were for only 1.5 grains - apologies.

Yes, different NDT’s content varies slightly. Using helvella’s chart for Efra content, your 2.5 grains with an additional 10mcg T3, calculations are:

(35 x 2.5) 87.5mcg T4

(8 x 2.5) 20mcg T3 + additional 10mcg T3 = 30mcg T3

When using synthetic meds that is quite a lot of T3 in relation to the amount of T4 you will be taking, and it’s difficult to know your conversion ability without taking an adequate dose of Levothyroxine alone.

For example you said you felt under-dosed on 100mcg Levo but haven’t said you tried increasing to 125mcg or 150mcg? Therefore, if you are adamant you want to medicate T4/T3 combo it might be prudent to start with something like 100mcg Levo and just 10mcg T3. These doses can then be titivated depending upon symptoms and test results.

Don’t forget good conversation is dependant upon adequate iron and nutrients.

[The-Wasp in reply to radd]

Thank you so much for responding! Wow, it's very complicated. I'm so lucky to have people like you and Helvella. Seems like there's so many ways things can go wrong.

[helvella Administrator in reply to radd]

Don’t forget good conversation is dependant upon adequate iron and nutrients.

And nice people wanting to talk with you.

[radd in reply to helvella]

Eh?

[radd in reply to helvella]

Oh yes, ‘conversation’ 🙄😆

[The-Wasp in reply to radd]

Yes to nutrients, good conversion, good communication and good peeps! Loads of people you should never talk to about your health problems.

[The-Wasp in reply to helvella]

Very true!