So after many calls and emails over the last 6 weeks, I got an emergency appt with my endo. 2 months ago he dangled the carrot of "maybe needing to add in T3" but then wrote to me saying my bloods are in range and to review in August. Then he's ignored me. After persistence and many messages, I saw him today and he suggested we up thyroxine again or trial T3. So I opted to trial T3. I currently take 6 x125\1x100 thyroxine. He suggested reducing to 100daily and adding in 5mcg of T3 in the morning.
I'm sensitive to increases/decreases, so worried how I will feel. He said if I feel worse to drop to 75/100 alternate days.
Latest bloods :
Serum free T4 level:16.6 pmol/L.
(10.8 to 25.5)
Serum TSH level:0.27 mIU/L
(0.27 to 4.2)
Serum free T3 level: 3.6 pmol/L
(3.1 to 6.8)
What do you guys think?
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My experience: When I added T3 - I dropped from Levo 50 to 25 (I still marvel when I look back at how low it was lol), and then added 10 T3.
There is some standard conversion that I can't remember, but I think dropping 25 Levo is pretty standard.
On the other side of things - I can say that for me - adding 10 T3 all at once is NOT something I would do again. I got palpitations right away that lasted for about 9 months. I think part of it was being under-replaced, but also, 10 all at once (taken 5 in the morning and 5 at night) was just too much.
My last test shows T3 is a little too high, and when I reduce I will definitely do in 2.5 increments.
I have read other people's experiences here about adding slowly, and splitting doses as they ramp up slowly.
So just my experience, not really giving advice, other than to agree with the cautious slow approach!
EDIT: Also... please come to the forum often when you do change your dose and add T3... as with any dose change, the first 6-8 weeks can be volatile. Doctors will give bad advice - like "if you feel worse, drop further." Although everyone is different, for myself and many others here, you can EXPECT to feel a little worse until things settle, and we many times encourage you to hold the line! And practice your patience. I did, and I'm glad, and I am finally out the other side.
Curious about your T4 - I will assume at both those tests you were on a steady dose of 6 x125\1x100 for at least 6-8 weeks when both were taken? I have no insights, just curious to see the FT4 drop in a month.
Thankyou. I really want the slow and cautious approach. I feel I need it. Endo doesn't get that, he is not expecting me back for a blood test any time soon. He doesn't fill me with confidence at all. He will see me in 6 months unless I have a problem. At the beginning on T4 when I felt worse, his advice was to drop T4 further, when really I needed more. Took me months to recover. I'm worried this will happen again especially as I don't have bloods prebooked with no real plan. No idea on the T4, everything was normal?!
It would likely to be good to know what products are (potentially) available!
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
Contains details of all known desiccated thyroid products.
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
pennyannie SlowDragon Could I tag and ask your advice please on my post please? Not sure if this is allowed or not. My GP ran additional bloods as posted but I'm worried about dropping my T4 by 25. Endo shrugged shoulders and basically left it to me to find balance. Either get in touch if struggling or go back in 6 months.
I'm taking 6 x 125 /1 x 100. Mainly Mercury or sometimes Accord. Plus I've been given 5mcg Roma T3 capsules to add in daily and then reducing my levo to 100 daily. Which I'm worried about. I'm taking ferrous fumerate, magnesium, D3/K2, omegas, B Complex. My weight is now 69kg
Thankyou. With regards to my measly 5mcg T3 capsule, Endo said to take it in the morning. Does it matter when? I take my thyroxine around 11 pm. I'm thinking to take my iron at 7am then T3 around 11 am? Thankyou for all your help.
So when doing blood tests do you change timing of last dose levothyroxine to 24 hours before test?
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I think you're very fortunate that your Endo is prescribing T3.
I take T3 (liothtronine) only now (initially I was prescribed T4 (levothyroxine) butit only gave me palpitations).
I follow Dr John Lowe who was a doctor/scientist/ and expert using T3. He had a bad fall that caused a brain bleed that caused his early demise. He was also an Adviser to TUK.
Thanks for that article. Was refreshing to see this in print:
“My sorrow is even deeper, however, over the millions of fibromyalgia patients who today are improperly treated for profit with Big Pharma's drugs. As my colleagues and I showed many years ago (and typified by the case we republish today in Thyroid Science), the continued suffering of most of those people is avoidable. But sadly, we now live in a world where drug companies and researchers they fund steadily more make their fortunes from sustaining the suffering of other human beings.”
shaws any thoughts on what biological mechanism of T3-only working… curious since combo in the form of NDT doesn’t work, then I assume Levo/Lio wouldn’t work, and … therefore its an intolerance to exogenous Levo entirely?
I'm not medically qualified so the only knowledge I have is through what gain I got from this Thyroiduk forum and Dr. Lowe.
I found Dr Lowe's information easy and which I found suited myself and the thyroid tablet I took - which is T3 - restored my overall body to good health.
Dr Lowe took his dose in the middle of the night when he awoke and it returned his health and enabled him to return to work i.e. doing research etc. It was very unfortunate that a bad fall caused his brain to bleed and it caused his premature death as he couldn't recover.
P.S. Once I put on Fibromyalgia''s forum information of Dr Lowe's advice on fibromalgia but they were very angry and removed everything I posted -they were not at all happy
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