What is going on?: Hi all, So I've been on NDT... - Thyroid UK

Thyroid UK

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What is going on?

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Hi all,

So I've been on NDT and levo for awhile now and I still feel crap. (Although it must be said that I can't understate how much better I feel on NDT compared with just levo!)

I got my latest bloods back yesterday and I sobbed and sobbed when I saw them. I have spent so long holding onto hope that 'the next increase will bring me back to myself' and now there are now more increases to be had.

Usually after a dose increase, after a couple of weeks I feel great and almost entirely back to myself for a few weeks and then slowly slow down again. This time I didn't get that at all. I've just remained at 'feeling heavy and short on energy'. My periods remain very light and my libido is still almost non-existant. (But has fluctuated in line with the rest of my symptoms).

Points to note: I have only been on this dose 5.5 weeks when I tested.

I accidentally jumped from 60mg to 90mg when the increase out to have been to 75mg. (I just started splitting my tablets to increase but forgot they were 60mg and not 30mg. 🤦🏻‍♀️)

I'd be grateful to hear anyone's thoughts. I've sent to my endo but he only does his private work on a Thursday so I'm unlikely to hear from him for another week.

Vitamins last tested in January and were ok. Iron is dropping after my transfusion last July. I'm not currently supplementing iron as I'd like to see where/if it settles. Might be able to chivvy the GP into investigating if it just keeps dropping!

Thank you.

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15 Replies

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waveylines3 years ago

The co factors are really important so if your iron is dropping it won't help. Remember blood tests shows whats in the blood nit what's in the cells. We need the cofactor to be really good too. To me, am no expert it looks like you need an increase in your levo. The reason for this is that your thyroid is slowly failing hence the need to increase. Looks like your accidental extra increase was the right thing to do! You say your iron is dropping but what about the rest b12, vit D, folate?

• in reply towaveylines3 years ago

yes, I have thought perhaps I need an increase in levo. Consultant is aiming to take me off levo entirely. I'm happy to follow his lead for now and see how I go. Perhaps levo itself is making me feel poorly? but i will be keeping in mind the fact that my T4 is perhaps too low for my T3. Perhaps I need them more balanced.

Other vits are maintained at pretty good levels. I supplement them and have found my maintenance doses so i'm quite confident that they will be good when I test them next month.

It's like spinning plates - feels impossible to get them all spinning at the same time!

waveylines• in reply to3 years ago

If thats the consultant plan I'd stick with his/her plan. Sorry didn't realise. Think you will have to wait for feedback from your consultant. 😊

• in reply towaveylines3 years ago

I will wait to hear back from him but I think it's just a default course of action on his part rather than going my my bloods. Which I am happy to trust but only to a point. I have a sneaking suspicion that I need a higher, or perhaps, more balanced T4&T3. I'm prepared to argue my case if necessary but I've no idea if I should.

It just feels so disappointing to finally have great T3 and still feel crap. I've been hanging all my hope on feeling well once I finally have good T3.

greygoose• in reply to3 years ago

Some people need their T3 over-range to get enough into the cells to make them well. Ranges are only a rough guide, not a cast iron rule.

How do you take your NDT? Split or all at once? Whatever you do, maybe doing the opposite will improve things.

• in reply togreygoose3 years ago

I take it all at once at bedtime. I'm been resistant to splitting it because I'm worried about eating/drinking at the wrong times. 😂

I think it's worth trialling though. Does it need to be split 50/50 12 hours apart? Or could I take 60mg at bed and 30 at lunch? ... I have 60 and 30mg tablets. Taking it 45mg and 45mg would be a faff!

greygoose• in reply to3 years ago

You can take it any way you like, whatever suits you best. You'd have to do a little experimenting. As long as it is taken one hour before food or two hours after, and two to four hours away from other medication or supplements - depending on what they are. Do you take any other medication or supplements?

• in reply togreygoose3 years ago

No other medications but I do supplement with B12, B complex, Vit D, magnesium, K2, Selenium, starflower oil, and a probiotic.

greygoose• in reply to3 years ago

OK, so vit D and magnesium need to be taken four hours away from thyroid hormone. The others, two hours away.

Imaaan3 years ago

Hi,

You mentioned that you take a single dose of your ndt/t4, does that mean you had 24 hrs before testing? If so, that could mean you have a false low of your free t3 and that it could actually be over range. Also, as you mentioned you were meant to titrate up to 75 rather than 90 so the jump to 90 might have been too much for your system.

• in reply toImaaan3 years ago

Hello! No, I take my tablets at 10 pm and do bloods the following morning at 8 am. Which is less that ideal in terms of timings but all my bloods are done this way so they remain comparable.

Imaaan• in reply to3 years ago

It may not be ideal but I get it I do split my ndt/t4 and take my last dose regularly at 10 pm and get my test this way as well.

• in reply toImaaan3 years ago

have you always split your dose?

Imaaan• in reply to3 years ago

Yes for ndt/t4. I'm in the early stages of my journey but I have to split because my body is very sensitive.I take Erfa30 and my t4 then eat breakfast an hour later. Eat lunch and have supplement by 1:30pm. 5:50-6pm eat supper then have magnesium, valerian root, digestive enzymes. 10pm have my 1/4 ndt and small amount of t4.

Incoguto3 years ago

Hey Witchinghour, I sympathise as I'm in the same boat. Currently taking Armour and smidgen of Levo and my labwork is quite lopsided and still have remaining symptoms. If you tested 5.5 weeks after the change, I would wait longer. I used to be waiting maybe 5-6 weeks and changing and never felt well. I have noticed that I need more like 8 weeks or more sometimes if labwork already looks good.

Similar to you, I feel so much better with more Armour less t4, have been reducing Levo gradually and adding more Armour.