Reasonable NDT increase?

Hi all,

I've been lurking here awhile.

I recently started taking Erfa 30mcg a day alongside 75mcg levo as prescribed by my endo. I was previously on 150/125mcg levo alternative days.

I've been on NDT&levo for a little over 2 weeks now and I felt great at first but I've dipped and the anxiety that I thought I'd left behind me is coming back and I've had a rubbish couple of days struggling with it.

Would it be reasonable to email the endo and ask for a small increase? I don't think I can wait another 4 weeks like this.

I've been GF for over a year. Latest results prior to NDT were:

TSH *1.26* (0.27-4.2)

FT4 *19.6* (12-22)

FT3 *4.4* (3.1-6.8)

Prior to that all vits we're good. (July 2021)

Ferritin *97* (13 - 150)

Vitamin D *135* (75 -175)

Folate *30.7* (8.83 - 60.8)

Active B12 *103* (37.5 - 188)

Diagnosed with Hashi's

TGAb *831.7* (0 - 115)

TPOAb *>600* (0 - 34)

Thanks all!

[SeasideSusie Remembering]

Witchinghour

I recently started taking Erfa 30mcg a day alongside 75mcg levo as prescribed by my endo. I was previously on 150/125mcg levo alternative days.

That's a big reduction in Levo. 30mg Erfa (which I think you mean, not 30mcg) contains 18 mcg of T4 and 4 mcg of T3. It's said that T3 is 3-4 times as potent in its effect than T4, so 30mg of Erfa is approx the equivalent of 30-34mcg Levo so you are taking considerably less than before.

I think that you either need some of your Levo reinstated or an increase in your Erfa. It's a pity your endo reduced your Levo so much, but most of them do, they haven't got a clue when it comes to adding T3 or NDT.

[Hidden in reply to SeasideSusie]

Yes, it sounded like a big drop to me too but I was happy to follow his advice because I'm just so tired to figuring it out myself, I wanted to let someone else take the reigns for a bit.

I've got some spare levo and extra NDT but I'm not sure what I ask for. I feel like I might have more success of I ask for something specific rather than ask his advice.

[greygoose]

Why Erfa? Why not straight T3? Or, why not put you totally on Erfa? You obviously don't convert very well, and rather than increase your FT3 - which is what you need - an increase in T4 either straight or in NDT, will probably increase your FT4 either over-range, or high enough to increase conversion to rT3 and do very little for your FT3. That doesn't make much sense.

[Hidden in reply to greygoose]

He prefers to prescribe NDT. He's of the opinion that it's a bit gentler on the system than T3... Less peaks and troughs.

I was hoping he would prescribe T3 but I was happy to try NDT. Just wonder if I'm in a but of no-mans-land because neither hormone replacement I'm taking is going to be able to work adequately if it's too low in supply.

[greygoose]

He may prefer NDT, but it's not him that's taking it, is it. It's you. And your present regimen isn't helping you. It should be what you prefer that counts. And, now you're stuck. You can't really increase either because both would take your FT4 over-range.

But, that still doesn't explain why he's keeping you on levo, and not giving you 100% NDT. Which I would have thought would have been the intelligent thing to do, given that you don't convert well. You don't need all that T4, you need T3. I really don't think he's fully thought this through.

[Hidden in reply to greygoose]

Probably not but I'll have to try and make the most of what I have at least for 6 weeks, I suppose. He did say it was a trial so there's room for negotiation, I just don't want to keep switching routines or hormone replacements unless I have to. I'm happy to be entirely on NDT if that works but I'm wondering if it ever will if I convert poorly.

Don't see him in person for another 10 weeks or so.

[greygoose in reply to Hidden]

No-one would suggest you keep switching hormone replacements without a good reason, but this one doesn't make much sense.

We don't really know exactly how well - or poorly - you convert because we haven't seen and labs for you on T4 only. But, judging by the difference between your FT4 and FT3 on this regime, it doesn't look good. Whether or not you would do better on NDT only is impossible to tell without trying. It's all trial and error, anyway.

[Hidden in reply to greygoose]

The set i posted were taken shortly before I started on NDT.

[greygoose in reply to Hidden]

Oh, excuse me, I didn't notice that. So, your conversion isn't terrible. I've seen a lot worse. I thought that was your first test on NDT. My bad.

So, when are your next labs due? I would say that, if you have enough NDT, it wouldn't be unreasonable to increase it by 1/4 grain as you've been on it for over two weeks. BUT, you would then have to wait at least six weeks before your next test.

[Hidden in reply to greygoose]

I agree - my converstion wasn't terrible! Which is why it made more sense to me to just top up with T3 but NDT was prescribed so for now at least I need to make it work.

Is there any sense in doing bloods now just to get an idea of what's going on? I think my T4 is low because it's only once I got it high in range that it went away. So maybe I just need more T4; but maybe increasing NDT with a view transitioning onto NDT with no levo, is a better idea?

[greygoose in reply to Hidden]

No point at all in doing labs at this point. It's too soon to get a true picture of what's going on. I expect your FT4 is lower, because that's what happens when you add in some T3. But quite how low is anybody's guess. But, the reason you needed a high dose/level of T4 before was because of your poor conversion. Your conversion isn't as important now because you're getting a little straight T3. You may need more T3 but difficult to know at this point after only two weeks on NDT. But, as I said, you could increase the NDT by 1/4 grain, which would be perfectly reasonable.

[Venicefan in reply to Hidden]

If you go fully onto NDT it should work for you as NDT has a much higher ratio of t3 to t4 than our own bodies would produce if our thyroid worked normally.

I’ve found since being on NDT that my t4 and t3 levels don’t need to be as high as they did when I was on (synthetic) t4/t3 combination.

My t4 is now around 12.4 (12-22) and t3 5.5 (3.1-6.8). I feel fine with t4 near the bottom of the range now and t3 doesn’t need to be right at the top.

Usually when you take only NDT, t4 does go down and TSH will be suppressed. It’s the t3 level that’s the important one.

[TSH110 in reply to Hidden]

I convert poorly but feel fine on NDT. I felt terrible on Levothyroxine only. I took 120/125mcg alternating daily of Levothyroxine and initially needed 1.25 grains (one grain is 60 mcg…or is it mg?, 38mcg T4 and 9mcg T3 I think) ) of NDT. I take 1.75 grains nowadays, after around 5 years I had to up my dose for some unknown reason.