Hi all. Was on levothyroxine 125mcg. Now endo changed to combination t3/t4. 10mcg liothyronine twice daily and 50mcg Levo. Still feel tired and have air hunger at night. Previous had air hunger at 100mcg and increased to 125mcg then it went away. Now it's back when on combo. Any help would be really appreciated. Thanks in advance.
My stats
Free t4 13.9. Total t3 1.6 and tsh 0.03. Bone kidney and liver function perfect.
Can you add the ranges on FT4 and total T3
Usually getting FT3 tested, but in Scotland they seem to test total T3
That's a huge drop in Levothyroxine. Likely need dose increase in Levothyroxine. FT4 looks low
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Have you had coeliac blood test done
Are you now on strictly gluten free diet and all four vitamins optimal ?
Thanks for reply. What sort of increase t4 do u suggest?
As silverfox7 says
We need to know the ranges on results
What was FT4 results on 125mcg Levothyroxine
Good vitamin levels are essential too.
Have you retested vitamin D
And with Hashimoto's we frequently need to be strictly gluten free
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Hi Marcus, just curious: what is air hunger?
Hi Marcus. Just read through your earlier posts. Well done on getting T3 so hope they keep you on it but you look like you have to prove you have a clinical need to be kept on it. I’ve never added T3 to T4 but I do know it’s always difficult to advise without ranges. They are very important as they vary from lab to lab so without them it would be guesswork.
I saw in an earlier post that it was recommended that you looked into vitamin testing. I see you are aware Vit D is low and you are supplementing but what about B12, folate and Ferritin? This was a life changer for me. I foubd I was low in D and folate and it took me a very long time to increase the folate. My GP was satisfied when I actually got up to the bottom of the range but I was t! Taking advice from on here I bought so methyl folate and it continued to rise. Can’t tell you how much better I felt but it can take time to get there. Always be aware though that when supplementing it iften is for life-I rattle! As thyroid sufferers our body is always losing these essential vits etc hence the life but it mage such a difference to me. Once optimal you can may be find an optimal level to keep it there. But it does take time.
At the moment t though to answer you question if dosing you need your ranges. Usually they are in brackets after your results. If not or you weren’t given a printout ask your doctor for a copy. I would always advise to get an actual copy as it has been known that results aren’t passed on correctly. It’s easy for anyone not familiar with what the reading should be and what they mean to mix them up! It does happen! It’s always difficult to comment without ranges but your last question was how much should you be adding and that is impossible to do without the ranges or it may also be that you don’t need an actual increase but it’s the vits etc that is letting you down. So more all round info will help. I don’t wan you to risk losing your T3 because Endo says it’s not working for you so please help us to help you you. .
Hi which methyl folate did you purchase please? Thanks!
Think I got it from Amazon
Thanks silver
Hi silverfox. Thank you kindly for your support and advice. And yes I don't want to loose t3. Think I will increase t4 my 25mcgs.
I’d check out b12/iron/folate if I were you.
Will do thanks
Hi Marcus, that's a huge drop in levothyroxine! I ended up really underactive again when they did this to me. When 20mcg of liothyonine was added in, my levothyroxine was reduced from 100mcg to 50mcg. At first I felt great, until the lower T4 (which is a storage hormone and takes a while to build up in your body) started to take effect and I got all my previous symptoms of being hypothyroid again.
My free T4 dropped massively so they had to slowly increase my levo. I ended up back where I had started - on 100mcg levo and 20 mcg T3 (split and taken twice a day). I do personally think sometimes that we are underdosed on levothyroxine - well I certainly was.
However it is worth sticking with - yes I was ill for a few months until they increased my levo, however the T3 totally woke my brain up, then later gave me lots of energy.
Thanks for your reply
I agree with what you say about being under medicated on levothyroxine! It's often pointed out that, when on T3/NDT, your FT3 is the most important indicator of good health and FT4 is basically useless as it's a storage hormone. I disagree. My own experience is that I need my FT4 around 1.1 (ref for my lab 0.7-1.5) to feel well. I have been on NDT for almost ten years, felt good for several years, then started experiencing strange symptoms of being both over- and under medicated. No dose of NDT could correct that - if my FT3 levels were well in range my FT4 dropped too low, and if I raised NDT enough to get my FT4 midrange my FT3 levels would end up above range. The solution to me was to add 25 (later 50) mcg of T4 to 3 grains of NDT, giving me a total of 27 mcg of T3 and 162 mcg of T4 daily. On that combo, my hyper symptoms went away, and I noticed an improvement in other areas as well after getting my FT4 levels up: I have more energy, but not the jittery kind of energy I get from too much T3, I feel warmer (according to site tiredthyroid.com, T4 is more important than T3 when it comes to body temp), it's easier to control my weight but I don't feel hungry and ravenous all the time like I do when on too much T3 for my needs.
Just to give you an idea, this is what my most recent labs looked like, on NDT only and NDT + T4:
On 3 grains of NDT (April 2019):
TSH <0.01 (0.2-4.5)
FT4 0.71 (0.7-1.5)
FT3 3.2 (1.7-3.7; I took half my dose of NDT 12 hours prior to testing)
On 3 grains of NDT + 50 mcg of T4 (October 2019):
TSH <0.01
FT4 1.12
FT3 3.3 (12 hours after taking half my dose of NDT)
As you can see, no big change in FT3 levels, but much more so in my FT4 levels, and that has made a HUGE difference to my well-being.
At some point, it was obvious to me that NDT only was not ideal for me. I still need the extra T3 I get from it, but also some extra T4 added to it to get a different T3/T4 ratio compared to what I used to need.
Since you're on synthetic T3 and T4, it should be even easier for you to tweak dosages since NDT contains a fixed T3/T4 ratio.
Put simply they probably dropped your Levo by too much. 125 to 50 is a massive decrease! I was on 175/150 and added 20mcg of T3, I was dropped to 125/150 and within 2mths I put mine back up to 150/175.
I don’t understand why they keep doing this! Saying that T3 is 3/4 times the dose of Levo is just skewed thinking. For me the two are not comparable. If on 125mcg Levo one is still experiencing symtoms but FT4 is around 80% through range then just leave it alone!! Add in T3 until symtoms resolve. If it’s insisted that Levo should be dropped it should only be by 25mcg. For me personally I do convert my Levo, it’s not enough to make me well so I like to keep my Levo high and ‘top up’ my FT3 levels with a little of T3.
I don’t think they know enough about FT4, they don’t understand how it ALL works just yet.
So up your Levo by 25mcg every 6wks until you feel well again 🤗
Thanks for your help. Will speak to endo
Just like NWA6 and helen_m ....my endo reduced Levothyroxine when T3 added
Down from 125mcg to 100mcg and 20mcg T3 added (10mcg (as 2 x 5mcg) for first 6 weeks, then increased to 20mcg )
After 18 weeks on reduced Levothyroxine....FT4 was far too low for me ...increased Levothyroxine back to 125mcg
My dr raised my t-4 to 75 from 50. I was on 15 mcg T3 but he didn’t raise that. I started to feel terrible raising T4 and not raising T3. He finally had to raise T3 to 20 mcg. It just was raised so hope will help. Don’t understand why I felt worse when he added my T4. My ft4 is in mid range but my ft3 was very low. Any idea why that would happen
you're not having air hunger because of too much T3. It's either not related or because you're still UNDER medicated. what's your basal temperature, your temperature in the morning before you get up? get a thermometer put it by your bed and take your temperature, if you're not ovulating, (probably not as you're called Marcus but shouldn't assume) then your temperature should be 37 like all humans. If your temperature is every day 35.5 or round about... then you're still hypo, need more drugs... if your temperature is 36.5 or higher you're not hypo and the meds are not lacking and you need to go see someone about the air hunger as a separate issue.
Good luck
Thanks for your help. Yes will try thermometer in morning. I think I'm under medicated
I found here, D3/iron help A LOT, feel better🐑
Hi thank for reply but my vitamin levels are fine including vit d and iron.
Normal starting step for transition to combined therapy is to replace a maximum of 50 of T4 with 20 of T3. So as a first try, 75 microgm T4 would be expected. Also you might suspect that your previous solo T4 dose might have been too low.
Also as info; once you are taking T3, the tsh result becomes invalid as indicator that your medication is sufficient.
Medics just don't get it, that best test of patient being sufficiently medicated is, "Do they feel well?"
Also talk to a pharmacist about what to take when and advice on vitamins- I found my local Boots were far more useful for advice than my GP
Thanks for your advice. Will ask to increase t4.
When taking NDT I believe that you shouldn’t add in any extra like Levo or T3. I was put on NDT by the NHS in the 1980’s. Whilst on it I never had any testing and was perfectly well until I needed my dose raiding. To expand a bit further on starting medication I was given 1grain of NDT. I was on it a few years but then found symptoms returning so I told my GP and he grave me another grain and I was perfectly right on that as well. That is because when you are using NDT your body takes what it needs so no testing was used and I was great. Sadly after about 5 years a strike stopped my medication coming in from Canada and I had to stop. I was good on Levo as well but I put that down to having a doctor who knew what he was doing. I’m now back on NDT but overseen by an Endo who thinks I must be tested regularly using Levo levels and is telling my GP that we have to get my TSH much higher. I have also always taken my basal temperature and that is a static 36.9 unless I have a stinking cold which very unusual for my anyway. Usually if I get a health problem it’s often because of something else not being treated correctly! The most serious problem I’ve had was breast cancer but I knew I didn’t ‘look right’ so doctor couldn’t find anything but referred me and that was picked up and I didn’t need Chemo as it was easily take out. But I also feel NDT doesn’t work well if you add Levo or more T3. I’m now trying to work out how to get my doctor to understand how NDT works and why I don’t want to see this Endo anymore. Grrr!
I understand your frustration.
From what I've read, T3 is ~3.3 times as potent as T4, so if you're on a total of 20mcg T3 and 50mcg T4, then you're still only on an equivalent of 116mcg — less than your original 125mcg.
I also felt good on 125mcg T4 and then experienced air hunger (amongst other unpleasantries) when the docs started monkeying around with my dose. The air hunger resolved once I got up to an equivalent of 122.5mcg — pretty dang close to that 125mcg target. So that's what I try to focus on now, regardless of changes to T4/T3 ratio.
Hey thanks for reply. I have added 25mcg and feel slightly better. Thanks for Info
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