Hello all!
Im currently on 150mcg levo a day. I've just seen my private Endo who has prescribed NDT.
His advice is to drop levo to 75mcg and take 1 X 30mg ERFA tablet a day as well.
Does that sound reasonable?
I have 100 tablets, plenty of levo, and another appointment in 3 months so I have some leeway to alter this a bit of need be.
Thank you all. 🌱🙂
plant_lady
30mg Erfa = 18 mcg of T4 and 4 mcg of T3.
If you take T3 as being the equivalent of between 3-4 times as "potent" in it's effect as T4 then the T3 is between 12-16mcg T4 equvialent. So 30mg of Erfa is roughly the equivalent of 30mcg and 34mcg T4.
Your GP is reducing your Levo by 75mcg and replacing it with the equivalent of 30-34mcg T4. So you are not getting like for like, you are getting quite a lot less.
The amount of T3 you are getting is less than a starter dose of T3 when someone adds it to their Levo and the reduction in Levo is a lot more than a standard reduction when adding T3 to Levo, which would normally be 25mcg if your FT4 level was high enough to warrant reducing by that amount.
Previous results attached.
I did think 30mcg wasn't enough but didn't know enough to argue the point.
What would you do next? Take the 30mcg of NDT alongside maybe 125mcg levo?
I want to make the best of what I have and I'm terrified to drop to 75mcg levo.
plant_lady
If those were my results I think I would try reducing Levo by 25mcg, leave a couple of weeks for some of the T4 to leave your body, then add the 30mg Erfa.
After taking mcg levo for 8 years and moving to NDT, I simply stopped the levo and started on 2 tabs NDT the following day. No problems and felt a great deal better within just a few days. Binned the remaining levo and will NEVER go back onto levo even in combo with liothyronine.
That's very reassuring to hear.
How much levo were you on before you switched to NDT?
I had settled on 150mcg after trying every other dose up to 200mcg without getting proper relief of the symptoms which left me unable to do much at all. I had no desire to create further delay by messing about for several weeks. My problem is as simple as it gets - total thyroidectomy for benign goitre with no other complications. The operation was miraculous and I felt an immediate 1000% overnight improvement, which, unfortunately lasted only a few weeks until a noticeable decline set in.
Wow that’s fantastic - I couldn’t have cooed with the T3 I had to go quite conservatively by 1/4 grain increments every so many weeks.
Sounds reasonable. I would be tempted to break the dose up for the NDT initially because having it all first thing in one go can make your head spin!
Does it? I have no idea. Just dropping levo by half and then not adding an equal amount of NDT felt risky.
I took first dose of reduced levo and NDT last night before bed because I figured the man came highly recommended and if I've made the leap to pay for my health care then I should try and trust the process.
Hopefully that was the right choice!
I do feel a bit sick and headaches this morning though...
I was on 100mcg levo and 30mcg liothyronine.
I changed straight to NDT, taking 30mg in the morning and 30mg in the afternoon. The equivalent of 76mcg levo and 18mcg t3. I gradually increased over a couple of months to 3 x 30mg, but found that was too much. I’m now permanently on 2 x 30mg per day (3 years now) and I feel so much better, I’d never go back if I could avoid it.
I think that my body didn’t recognise the synthetic thyroid hormones as something it could use
This is really reassuring. Thank you. 🙏🏼
I've spent a year gathering data to prove (to myself) that going private was the right thing and pursuing an alternative medication was justifiable. And now it's here I've suddenly got cold feet!
It’s just nerves and fear of the unknown I was terrified but I felt so poorly I knew I had nothing to loose in trying it out and I have never looked back I got a life again not just a hideous shadowy existence!
Would you possibly be able to PM me the contact details of your private endo please? I'm getting nowhere fast with the NHS one I have as he doesn't listen to a thing I say and I think going private now is my only option
When I got my first order of NDT I kept looking at it like an unexploded bomb! I felt so awful on Levo that in the end I just said to hell with it and started taking the NDT in a straight (ish) swop. Two days later I had an idea. I had not been able to think clearly for some time so it came as a surprise! I realised my little grey cells were still there! It was such a brilliant feeling. As the weeks went on, I got so much better.
Recently because I could not get any NDT, I had to go back to Levo and all the old pains and fog came back. It took about a month back on NDT to feel human again.
Reading this forum, it appears so many of us were diagnosed with depression. I was and was told I may feel worse for a few days. That scared me so much I did not take the ADs. It was only when I developed a goitre that the penny dropped for me (but not the GP).
Good luck with the NDT. Give it time. I think my body was just crying out for some hormones so I had a pretty quick reaction.
That's the fear! I'm probably running at about 60% now and I can just about manage life. Just. But if it slips even a little bit then my work suffers and well, I need my job!
Took the first dose of NDT last night so let's see...!
It's really heartening to hear success stories going from levo to NDT. I'm a little more optimistic now!
I had to leave a job I should have been great at, but on Levothyroxine I was utterly useless like a brainless idiot unable to remember anything. I got another job ok and properly recovered on NDT I then went for a part time dream job got it and got another p/t job off the back of that so I was doing what I loved full time and I have greatly enjoyed the jobs ever since. I could never have achieved this on Levothyroxine which left me mentally and physically debilitated.
I'm grateful that my bosses are really flexible and are more focused on whether I get the job done as opposed to the hours I keep. If I didn't I would have almost certainly had to quit.
Alongside all the other stuff; kids, dogs, animals, allotment, cleaning, cooking there is currently nothing left for fun or joy.
I am glad I never had kids I’d have been a crazy monster mummy with this disorder when it was undiagnosed! They’d have been mentally and emotionally scarred for life. Mind you I don’t hold it against my mother who was very poorly with it and acted out of character as a result. I suppose you know they are ill and it’s not their fault, it’s just sad.
Mine was like having the lights turned on again after being in a monochrome gloom. It was very dramatic. After the first dose it felt like I was a jigsaw puzzle that had a missing piece that had suddenly been put back in place and I was whole again, it was an incredible feeling. I was terribly ill on Levothyroxine and I felt like a ‘thing’ not a person, it was very awful. NDT gave me back my health and even improved it - my terrible long term debilitating depression simply evaporated - how I coped feeling like that most of my adult life is beyond me.
Getting my T4 levels up to a decent level did away with my OCD that I've lived with for 8+ years. Absolutely unfathomable now that I could live like that.
I haven’t cracked hoarding yet - god am I untidy yet I used to be monkish in my material possessions before that thyroid tsunami hit me! Interesting that it caused OCD in your case - & glad you are free of it.
You go for it! I am sure you will look back in a few months and think "I feel human"! Good luck!
In my experience 25mcg levo is about 1/4 grain NDT so I think that’s not enough NDT To compensate you’d need 3/4 grain so more like 45mcg if the grains are 60mcg. The T3 can be a bit of a hit at first. I reduced levo by 25mcg and added 1/4 grain (15mcg) and tried that for about 2 weeks results were near instant I felt loads better then dropped another 25mcg levo and took 1/4 am and another 1/4 grain pm if I took it all at once I felt really odd - jittery - too much T3 to adjust to. Then you keep going in this manner until you feel well. I stopped Levothyroxine altogether as I felt really good in NDT, & still do after 7 years, after a few years I no longer needed to split my dose of NDT. I take it am, if I take it at night it’s harder for me to sleep but it is supposed to be more effective if taken in the evening. I hope it all goes smoothly and you get the sort of benefits I did - it was nothing short of miraculous!
😬 I've just jumped straight into 75mcg levo and 60mcg NDT.
2 days in and I don't feel any different yet... Although now I'm thinking about it, maybe I do feel a bit clearer... 🤔 Let's see how the week goes!
Actually, I've been thinking about it since I started typing. 😂 I take my NDT at night, starting Thursday so that's 2 nights I've taken it.
Yesterday morning I felt clear like this too but by yesterday afternoon I was a mess. Exhausted and good for nothing. Which would possibly be explained by the T3. 🤔
Sorry; bit of a stream of consciousness there. 😂
Try splitting the NDT dose to even out the T3 a bit, and see if that help with keeping the energy levels more steady ….as I said I don’t think it’s truly equivalent so you may need a little more NDT eventually. It sounds like a step in the right direction and it’s only 2 days in - things should get better 😁
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