Adverse reaction to T3/lack of T4? Strange symp... - Thyroid UK

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Adverse reaction to T3/lack of T4? Strange symptoms...

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After being on erfa thyroid for around 8 months I switched to a T4 + T3 combination about a year ago. I gradually increased the T3 and decreased the T4 over many months, the last dose I was ok on was 40mg T3 and 75mg T4 over the summer though my TSH was suppressed as it has been for years.

When at the end of last August I changed to 40mg T3 and 25mg T4 and for the first time since I was 6 years old my T4 bloods level was out of the lower range (which I know shouldn't technically be relevant...) I developed pain and discomfort in my lower arms wrists and hands.

At first I assumed it was RSI/tendonitis as I'm a violinist but after 3 months of complete rest, strong anti inflammatories, splints, physio and regular icing it had only gotten worse and I was unable to wash my own hair/dress myself and even holding a fork or a cup was too painful. I also had to stop going to uni as I'm studying violin and have been unable to play for months, and couldn't even hold a pen to write my essays.

I then thought back and noticed it had gotten worse when at the end of October (about 3 weeks after the pain began) I took out the T4 altogether and was on only 50mg T3.

In mid december after noticing the possible connection I went back to my previous dose of 40mg T3 and 25mg T4 and my hands improved slightly but were still bad and I developed pain in my legs too. I saw my endo at the start of Jan and we decided to gradually up my T4 to 75 and T3 down to 30mg. When I increased my T4 to 50 it improved a lot, then a week later when I increased to T4 75 the pain/discomfort was improved again, though it is still there but around 60-70% better than it was on no T4.

Any logical explanation for this?! I certainly can't think of one!

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shaws profile image
shawsAdministrator

It may be the fillers/binders in the medication that you are sensitive too. Excerpt from Dr Lowe and go to question dated September 6, 2001. Some of the other questions may be of interest too:-

Dr. Lowe: Your wife may be having an allergic reaction to some constituent of the thyroxine tablets she is taking. It is extremely unlikely that thyroxine molecules themselves are causing the reaction. Thyroxine is what we call an "orthomolecular" substance. This means that thyroxine is natural to the human body and necessary for health. Allergic reactions to orthomolecular substances are incompatible with health and extremely rare.

web.archive.org/web/2010103...

in reply to shaws

Interesting, thanks for the info.

It seems though that it's not the T3 causing the problem but the lack of T4, which I really don't understand because the T4 is only going to get turned into T3 anyway? so I don't see any logical reason for me to be unwell on T3 but better on T4, unless my body doesn't like the T3 in that form, who knows...

So - my body makes T3 using the synthetic T4, does that mean then the T3 my body has made using the synthetic T4 is different to the synthetic T3 tablets I take?

Aurealis profile image
Aurealis in reply to

I don't know why, but no matter how much T3 I take, I'm not well unless I take T4 too. I take 50 Lio and 50 or 75 thyroxine.

in reply to Aurealis

Glad I'm not the only one. For some reason I was very hypo on 50mg T3 yet on 175mg of T4 I was nowhere near as hypo. Also found it strange that I was a lot better on 40mg T3 + 25mg T4 than 50mg T3...

I think I'll probably aim towards a dose of mainly T4 with just a little added T3, maybe 20mg.

I used to take 150mcg of levo then my endo (private) said he would let me have 20mcg a day of litho providing I drop my levo. So he dropped my levo to 125, I then droped it to 100 as I felt better. however after 3 months I started not feeling too great again. So I have put a new regime in place for my supplement and have droped my levo to 50 and upped my t3 to 50, to see how I feel.

Yesterday was the first day I did this. I was up at 6am clean two rooms of the house by 10.30 had a showever drove for 1 hr to manchester and spent 5 hours shopping with my daughter and drove home by 7pm. I am normally sleeping by 5pm. Although I only took 10mcg of t3 as I was a little concerned about how great I felt.

I guess it is just that we all react differently. I am hoping that I start to see improvements in my general alertness and motivation levels which have been pretty lack luster of late.

I guess if you are feeling your best taking a partiuclar combination and you are in a good place and your results do not raise any concerns then why change it. It sounds like you found the sweet spot.

I hope I find it too soon.

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