Hi. I am sorry to keep posting but I am now thinking about stopping T3.
A quick summary. I was on T4 only for 20 years after a partial thyroidectomy and was actually pretty ok on it. I then saw an endo about 4 years ago for hyperparathyroidism caused by two parathyroid tumours. He said that he thought some of my symptoms were actually because I wasn't converting that well from T4 to T3. He suggested I try NDT which I did, but we struggled to get the right dose, so I then moved to a combination of NDT and thyroxine, and looking back at my notes I think I was doing reasonably ok on that. But for some reason I decided I wanted to try T3 with T4 instead of NDT and T4 (I can't remember why). So I started that combination in around February 2020. I have been on it since but again am struggling with the right dose. Over the past year or two I have also been having stomach issues and tremors. Looking back, I have just realised both of these symptoms probably started when I began the T3.
So now I wonder if they are actually the cause and whether T3 isn't right for me. Any thoughts anyone?
Many thanks
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Spangle15
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As there is T3 in NDT it seems logical that T3 itself isn't causing your problem. What could be is excipients in the synthetic T3 or the actual ratio of T4:T3 that you are using.
When you were taking NDT with levothyroxine, what amounts of each were you taking, that will tell us the ratio of T4:T3 at that time, then compare that with the ratio of T4:T3 you are currently taking. Is it the same? If so then it could be the actual synthetic T3 you are using that's a problem, so maybe another brand with different excipients is worth a try.
I was taking 100mcg Thyroxine and 1/2 grain of ERFA. According to my notes I was pretty stable then.
I am currently taking 108 mcg thyroxine daily (100 for 2 days, then 125 for day 3, then the cycle repeats). And I have just changed from 10 mcg T3 to 7.5 mcg of T3. But my dose has changed up and down since I started on it because we can't get it right and my test results keep changing, which I think could be down to menopause and starting HRT.
I was taking 100mcg Thyroxine and 1/2 grain of ERFA. According to my notes I was pretty stable then.
1/2 grain (30mg tablet) Erfa is said to contain 18 mcg of T4 and 4 mcg of T3 so your total T4 was 118mcg plus 4mcg T3. That is a very small amount of T3 but if that's what you needed to make a difference that's fine. So you are currently taking more of both T4 and T3 than when you were stable on Levo and Erfa.
But my dose has changed up and down since I started on it because we can't get it right and my test results keep changing, which I think could be down to menopause and starting HRT.
OK, so are you doing all your tests under exact same conditions, i.e. we always advise:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
HRT may reduce the absorption of thyroxine medication in those with hypothyroidism so that's something to take into account, levels may change due to the HRT so some adjustment may be necessary. Also keep HRT as far away from thyroid meds as possible to minimise any potential problems.
Thank you Seaside Susie, you are very kind to give such a thorough response.
Yes, it is a very small amount of T3, which is why I wonder if I even need it. I was pretty stable for 20 years without it, and wouldn't have even known it existed if the endo hadn't suggested I try it, on the basis that some of the symptoms I was having at the time, he thought were thyroid related and not parathyroid. Unfortunately I wasn't keeping notes back then of my symptoms, I only started after he suggested the change.
I do follow the above for taking blood tests, yes, thank you for sharing them again though.
Interestingly I have had to reduce my thyroxine since starting HRT and not increase it. I take it approximately 7 hours apart so hopefully that is enough.
I also used to take my thyroxine at night time before a nutritionist said I should be taking it in the morning.
I also used to take my thyroxine at night time before a nutritionist said I should be taking it in the morning.
Take no notice. Take it when it suits you. Some people find it better to take it at night. I take mine in the early hours of the morning when I need a visit to the bathroom so that's often around 4-5am. If you felt better with taking it at night then that's right for you, there are no hard and fast rules, we are all individuals.
Yes, it is a very small amount of T3, which is why I wonder if I even need it. I was pretty stable for 20 years without it, and wouldn't have even known it existed if the endo hadn't suggested I try it, on the basis that some of the symptoms I was having at the time, he thought were thyroid related and not parathyroid.
You could, of course, ditch the T3 and see how you go. If you are well on just Levo then stick to that. If you feel you need that small amount of T3 then so be it, it could make all the difference. The only thing I would say is experiment without telling your endo (or GP, whoever provides the script) that you are stopping the T3, because if he stops your prescription then I expect it may be impossible to get it back again if you find you do benefit from the T3. Sometimes we have to use a little subterfuge 😉
Thank you. That was really the main reason for my original question because I was wondering if I should try stopping the T3 for a while and see how I go.
I also might swap back to taking my thyroxine at night, it would make things easier with the HRT too.
You are not hyper ( as in hyperthyroid...) this is a misleading term you are hypothyroid and overmedicated!
Your FT3 is well over range and your symptoms indicate this....time to reduce.
Since you don't say how much hormone you are taking it's difficult to comment but you posted 2 days ago about varying your T3 dose from day to day....revisit those replies.
Your system is confused by all the rapid dose changes you are making ...and suffering from overmedication.
Keep a diary of all the changes you make, your lab results and any symptoms you have ....this will prevent "I can't remember" happening.
There's no doubt it is a challenge but if you slow down and lower your T3 to at least within reference range it will be a start....too much is not wise.
If you can post recent results that would probably help us, though with so many changes, results may not be stable enough.
Thank you for your reply DippyDame. I appreciate your time in responding.
I apologise for using the term hyper. Hopefully people understood what I meant.
These symptoms have been going on for 2 years now, so I have had them even when I have been in range and not overmedicated, and way before my recent dose changes. I have a spreadsheet that I have been keeping for a few years with dose, results and symptoms, I just hadn't connected the stomach issues and tremors because they were still ongoing when I was in range. Hence the reason I wondered whether they might be side effects of the T3 rather than a symptom of over medication.
I will go back through my spreadsheet and see if anything else comes to light.
"...so I have had them even when I have been in range and not overmedicated"
Being "in range" doesn't mean you are appropriately medicated, it is the point on the range that is important.....the point where you feel well.
He said that he thought some of my symptoms were actually because I wasn't converting that well
So he prescribed T3 based on " he thought" when he should have been sure...not difficult....high FT4 with low FT3. Does this show up on labs in your spreadsheet?
The question is, " Did you need T3 in the first place?" or 'Do you just need less?"....historic labs should help.
When I started my spreadsheet which was basically when I started on the NDT to monitor it. I went back historically and logged any previous blood test results I could find.
There is only one showing T3 from about 18 months before he suggested trying it, which does show a low conversion but I am guessing at the ranges based on tests since as I haven't logged them. So I am not certain.
T4 was 23.9 (12-22)
T3 was 4.0 (3.1-6.8)
The next T3 results I have are from about 6 weeks after starting NDT:
2 ½ grain
T4 13.79 (12-22)
T3 8.1
(3.1-6.8)
I felt really unwell at the time with those levels.
Unfortunately I have some issues with iron so my ferritin isn’t that high. Everytime I try and take iron, my transferrin saturation goes above range, which the GP says isn’t an issue but I’m not so sure.
But B12 and vitamin D are good.
My current dose is 108mcg thyroxine daily and 7.5mcg of T3.
I think you’re right about returning to just thyroxine and seeing what happens.
Hi Spangle15For what it’s worth, I am much better on T4 only. I tried T3 twice and it made me feel quite ill. No ‘hyper symptoms’, but bloated and nauseous and generally unwell.
I also found that my preferred brand of T4 is Teva, the one a lot of people cannot get on with.
Goes to show we are all different and need to try different things to find the one that suits us.
I hope all goes well and you find the right combination for you.
Hi PixieElv. Thank you so much for commenting. It’s very helpful to know you’re better on just T4. Out of interest, do you know what your blood levels are at for T4 and T3? Thank you.
I know these are amazing results but I started 2 years ago on T4 and T3 below range.
Worth mentioning that mine is central/secondary hypothyroidism, so it’s my pituitary gland that’s not working and not my thyroid. Not sure if that makes any difference?
Thank you. They’re great results and from what I’ve read here I think they are perfect for most people to feel well. You obviously convert well but possibly it makes a difference as it’s secondary. Thanks again for your help.
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yes, I can believe that.
NDT makes me feel better than T3+T4.
thyroid hormone resistance? not getting better on t4 alone or t4/t3 
Felt better with T3 now back to square one.
Results - anyone on T3 /t4 combo?
Is NDT better absorbed than thyroxine/liothyronine combo?
