So I've been on 75mcg of Levothyroxine since June 2016 and I was diagnosed as hypothyroid 16 years ago. My symptoms have been getting worse and worse. I've been to see Professor C in London and Dr P and they both think that Levothyroxine on its own isn't working. Professor C is being more cautious probably because I didn't react well to the Adrenavive iii adrenal support that was recommended for me by Dr P and thinks I should spend six weeks on Selenium 200mcg retest and then start NDT or T3. However, I'm a complete mess and I want to at least start preparing to take T3. I'm also not sure if I can wait another 5 weeks either. Dr P on the other hand wants me to start immediately. I think Professor C is veering more towards NDT because of the cost of T3. I don't plan on getting it from his private clinic due to the cost and I understand I can buy it from other sources and I've been sent details for Greece from a forum member.
What strengths do the tablets come in? What brands do people prefer? Do I need to lower Levo and then start T3? How much should I start off with? Do you take it with Levo? How do you know when to increase the dosage? Also why do some people take just T3?
I'm completely new to this and would appreciate any advice, thank you.
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Just looked at another of your recent posts and saw TSH is over 2.0. Have you tried raising your Levothyroxine dose? You may not even need T3. I couldn't see an FT3 result - has it ever been tested?
Prior to June I was on 100mcg for a few years. I can't say I felt much better on that dose either. In November 2016 my private test results were as follows:
But you see, if your TSH was still 1.75 on 100mcg that means 100mcg wasn't enough either. You may have needed 125 or more. We find here that many need their TSH to be below 1.0.
That said, it's clear you don't convert that well. Do you happen to have a ferritin result? You need ferritin to be 70+ for your body to be able to efficiently convert T4 to T3.
In March 2016 when I was on 100mcg, TSH was 0.05 and Free T4 was 14.8. I had an iron infusion in November and my Ferritin has since risen from 19 to 150.
I've just had a lightbulb moment. I've been especially ill since about May 2016. It all makes sense. Two bouts of vertigo, stress, exhaustion, viral infections. My health has caused me to leave one job and lose another. An Endo increased Levo from 75mcg to 100mcg in 2013 for my new GP to reduce it back to 75mcg last year because my TSH was getting close to 0. I can't believe this. 😩
Sadly, I can believe it. But it's not your fault. We have probably close to a 100 posts a week from people who tell us their levo was cut because their TSH was suppressed, even though their FT3 and FT4 levels clearly showed those people couldn't possibly be overmedicated. It looks like you're one of them.
Doctors are taught that the only result that matters is TSH. But that isn't true!
Back then I didn't know my Free T3 levels. I knew nothing about T3. I only discovered this website a few months ago. Hopefully supplementing with T3 will help but I'll be honest I am afraid of starting T3.
I was originally prescribed 25 and then moved up to 37.5 T3 only. During and after cancer treatment. I went as high as 100. Needs may vary over time....
Now, I take 50 each of T3 and T4, with the T4 and half the T3 on waking, and the rest around 130pm.
If you're self dosing, you may want to start at half of what you think you need, then move up in 5mcg increments every 4 days or so. Read up on hyperthyroid symptoms and back off if you feel any.
Once yiuvecbeen where you think you feel fine, you can test free T3 and 4 and perhaps reverse T3, if appropriate, to verify that you're in the right ballpark.
I see Dr P from time to time. When I first consulted him, over ten years ago, he suggested I transition from levo to desiccated thyroid. I can't remember the procedure after so long, but I do remember that when I transitioned from NDT to T3 only, I stopped all thyroid replacement for about a week.
I started taking T3 at the smallest dose I could get back then (5 mcg Cytomel from the US - now incredibly expensive) and went up by small increments every two weeks, until I reached 20-25 mcg. After that, the increments were larger, I think 12.5 - 25 mcg, and I had to keep a close eye on my pulse, BP and morning temps and other symptoms, to guide me.
Did you not fare well on NDT? I thought it was only UK T3 that is now extortionately expensive or are the US brands also affected? I don't understand why in some places it can still be purchased relatively cheaply but not in others. I hope that doesn't change.
When it comes to temperatures, I'm usually above 36c but I've noticed prior to my period I've reached 36.8c only to drop down to say 35.8c and then a constant 36.3c for some days. It does change a lot to be honest.
If you're on T3 is it possible that your temperature could go above 37c? In this case would you lower T3 to get back down again to 37c?
I found that I couldn't tolerate T4/levo at all, so I had to stop the NDT.
All T3 is pretty expensive if you're in the UK and importing it, but the US branded and generic T3 is the most expensive. I can't travel because of illness, but if I could visit Turkey, for example, I could buy their brand of T3, Tiromel, at much lower cost.
I think temperature variation before and after a period is pretty normal. In regard to low basal temperature caused by hypo, it can be the case that your temperature never quite reaches the normal range. My temps have never risen that much, but my husband's basal temp is rising nicely with treatment - and he can tolerate NDT too.
Hello, you can get 5 mcg tabs T3 in the UK providing you have a prescription, I have been taking 5mcg Sigmapharm along with 75mcg levo for the last 5 months and feel much better than I did than on levo along
I've never heard of Sigmapharm. I keep hearing about Mercury Pharma. I take it you don't need to go beyond 5mcg and that's enough for you? I was planning on buying 20mcg tablets and cutting them up.
After what Jazzw said above I'm beginning to wonder whether I should be on 100mcg of Levo and add T3 to it? It's only since my GP reduced my Levo in April I've been particularly sick. Having said that I struggled on 100mcg too but just not as much. I was on 100mcg for 3 years. The thing is I don't have Free T3 results whilst on 100mcg. However, neither Professor C nor Dr P said anything about this.
Are you getting your Sigmapharm T3 through a private or NHS prescription?
SigmaPharm, Perrigo and Mylan (as well as Pfizer's Cytomel) are all USA products which are available in 5 and 25 microgram tablets.
Mercury Pharma liothyronine is the sole licensed UK product and is 20 microgram only.
A few people have received different products in the UK such as specially compounded and in different doses but it is the luck of the draw whether you live somewhere that can happen.
I think Sigmapharm was dispensed as they supply it in 5mcg, from what I have read on here Mercury Pharma comes in 20mcg. I am hoping to have my T3 increased soon but the Endo wouldn't increase it last time . I got referred by my GP to Endo and saw him privately through work private healthcare. The trial of T3 I paid for myself my Endo suggested this was the best way to go, he then wrote a letter to my GP saying I was feeling a lot better on it etc, then my GP agreed to give me NHS prescription for the second lot of tablets which is what I am on now. The private prescription cost approx. £285 for 3 months supply. My understanding is that if an Endo agrees to the trial and that it has positive benefits he can ask your GP to prescribe it. Best of luck.
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