Hi, me again needing advice from the knowledgeable ladies at Thyroid UK. Thank you for always being there for us!
I have Hashimotos and Sjögren’s. My Sjögren’s antibodies and inflammation are very high. After six years on levo and gaining weight from the start (even though my weight was stable before I took it) and never feeling great (I never know whether it’s Sjögren’s causing tiredness) I have finally been given 50 mcg of levo and 10 mcg of T3. I’ve only been taking both for two weeks but feel no worse, no better! After three months off medication I suppose my body’s got a lot to deal with.
I’ve been reading why Levo may never work on someone with a lot of inflammation as the body turns T3 into reverse T3. I’m wondering if because of Sjögren’s I’m maybe one of the people who Levo doesn’t work for and maybe I just need T3? My T3 was on the low end of normal on levo and was exactly the same after no medication for three months.
Any advice would be greatly appreciated.
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Essexlil
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hi, my bloods while on 100 mcg this February were:
TSH 0.07 ml/L (0.27-4.2)
T4 19.2 pmol/L (12.0-22.0)
Free Triiodothyronine 3.9 pmol/L (3.1-6.8)
My T 3 was still 3.9 after No levo for 3 months - I’ve explained to dippy dame how that happened.
I don’t think I’ve worded the reverse T3 properly - I meant maybe why Levo wasn’t helping me was the T4 was converting T3 to reverse T3 because of my high inflammation due to Sjögren’s and that’s why my T3 was low.
ok so endo is just following the current NHS Liothyronine guidelines which tell them to :
~ first prove the patient is genuinely hypothyroid.. if no good evidence, then take them off levo for a few months to see if TSH rises. ( because your antibodies were low the endo was checking that your original diagnosis was valid)
~ the reduce original Levo dose by 50mcg, and add 10 mcg T3 .
In practice this is often too big a reduction in Levo , and 10mcg is not enough to replace 50mcg Levo (as a very rough estimate to work it out ~ T3 is said to be about 3 or 4 times as 'potent' as Levo, so 10mcg T3 is 'equivalent' to 30 or 40mcg levo .. not 50 ) obviously it's not real equivalent, cos it's comparing apples with pears.
There has just been a new consensus statement published , which is now suggesting a slightly different starting dose of T3 .. might be useful when discussing dose with endo.
ie the new one suggests :
substitute T3 at 1:17 current levo dose , and reduce Levo by 3 X T3 dose.
ie.. replace 100mcg levo with 5mcg T3 + 85mcg levo
Use of liothyronine (T3) in hypothyroidism: Joint British Thyroid Association/Society for endocrinology consensus statement
Rupa Ahluwalia, Stephanie E. Baldeweg, Kristien Boelaert, Krishna Chatterjee, Colin Dayan, Onyebuchi Okosieme, Julia Priestley, Peter Taylor, Bijay Vaidya, Nicola Zammitt, Simon H. Pearce
your fT4 wasn't too high on 100mcg, it clearly didn't really need reducing by as much as 50mcg . but now you've started you'd better go with what endo suggests and see how the blood are after 6 weeks. but you can use that new concensus statement to get endo to see that levo should have only been reduced by 30mcg if adding 10mcg T3 .. so that may help persuade them to increase levo back a bit if needed at your next appt .
Forget about Reverse T3 for now ... 'too much' T4 does influence the deiodinases , causing them to turn more T4 into reverse T3 , and less T4 into T3 ,and at the same time to get rid of T3 faster by deactivating it into T2.
When too much T4 is the reason for having high reverse T3 , then lowering T4 dose is the right thing to do .... but you've just reduced the T4 massively anyway ... so for now , just concentrate on getting the dose of T4/T3 adjusted properly .
(Inflammation does also have some complicated effect on deiodinases i think, sp perhaps it can increase rT3 ?,... i'm not very up on inflammation yet ...... but i'm sure it's too soon for you to be thinking that you will need to ditch Levo entirely.. and beware ~ there is a lot of out of date / badly written/ misleading information out there about reverse T3 'stopping T3 getting into cells' etc , it's way more complicated that that , it's not actually the reverse T3 that stops anything , it is the deiodinases and the changes in them that are controlling how much rT3 is made and how fast T3 is got rid of ......so you do need to be very careful that you fully understand the issue for yourself before following anything you read .
Oh I see why he did it now! Thank you for all of the explanations - it’s very complicated - I just wish that after all of the years of people suffering somebody could actually properly treat this disease. My dear mum passed away 16 years ago having suffered badly from bad treatment and nothing seems to have really improved.
Looking at your labs from 2 years ago when on 100mcg levo your conversion appears poor
Have you optimised vit D, vit B12, folate and ferritin since then?
Do you test before 9am, at least an hour away from food and drinks. And 24hrs after last dose of levo and 12 hours after last dose of T4
Then...
Serum free triiodothyronine 3.6 pmol(3.1-6.8)
Serum TSH 0.14 mlU/L (0.27-4.2)
Serum free T4 17.8 pmol/L (12-22.0)
Now...
for 2 weeks you have been taking 50mcg levo +10mcg T3
Is this following the 3 monthe with no medication?
Why did this happen? That alone would upset your system
Now your poor body has been challenged with a new dosing regime which I would suggest has been initiated with too little levo and too much T3
But...
.to gain some perspective on what is going on I'd suggest you stick with this dose for 6/8weeks then test again as per protocol above.
To obtain acurate results we must be on a steady dose for at least 6weeks before testing
Your source was wrong to suggest that T3 turns into rT3....
rT3 is the inactive form of T3. If your T4 gets too high, it starts converting to rT3 rather than to T3 so that the FT3 doesn't go too high. It is transient and generally nothing to worry about....and is a form of protection
It's difficult when all manner of questions are buzzing round inside one's head so one slow step at a time usually identifies or eliminates any problems....it can be mind numbingly boring but patience pays off ( and that's from someone who is far from patient!!)
So, I'd suggest you stick with your current dose for at least 6 weeks, test again to include, if at all possible, TSH, FT4, FT3, vit D, vit B12, folate, ferritin ( you are already positive for thyroid antibodies so no need to test again)
hi, thank you so much - I’ll do what you suggest and stick with it now and get all my bloods done six weeks from re-start of levo and new T3. I ended up in this mess because I was hoping the endo would prescribe T3 when I told him I’d felt no better on levo for six years. He decided that my antibodies were low and I maybe didn’t need medicating so he told me to stop taking it and if not bad to see him in three months with a new set of bloods. I hadn’t felt too bad as Sjögren’s affects me too so I waited the full time. Convinced I had underactive thyroid this time he said you were on 100 mcg levo so I’ll give you 50 mcg levo and 10 mcg T3 as that adds up to the same. That’s where I am now, two weeks later no better, no worse.
Thank you - I’ve been taking vitamin D3, magnesium, fish oil, vitamin B12 and Bvitamins containing folate. I’ll see on my next bloods if they’ve all improved - vitamin D had on my last test as I’ve been taking that for quite a while. I’ve been having 8.30 am blood tests, no food or meds before. I forgot to mention that before my Hashimotos was diagnosed I developed xanthelasmas around my eyes. I had them removed and unfortunately they came straight back during my 3 months without levo.
Unwanted elevated inflammation causes as many issues for FT4 as it does for FT3 because it’s not the individual thyroid hormone but the deiodinasing thyroid enzyme ‘Type D3’ that up-regulates regardless. Therefore, causing a proportion of BOTH hormones to become inactive metabolites that induce hypo symptoms.
There is much easily absorbable info written by Tania Smith regarding useable/unusable T4 & T3 on Thyroid Patients Canada. She liaises with and interprets a lot of diogenes papers (our resident forum thyroid scientist).
Wow I’ve read Tania Smiths information but it’s all too complicated for me! I just hope that as my body’s full of inflammation due to Sjögren’s my T3 and T4 won’t work. The thing which would cure an awful lot of people is a cure for autoimmune diseases.
Absolutely, and unwanted inflammation is very destructive, even a killer (cardiovascular disease, etc ).
Unwanted inflammation skews the best function of the thyroid deiodinase enzymes and disallows our meds to work effectively. Hence why one autoimmune condition often invites others and why functional medicine will encourage reduction of antibodies which are representational of unwanted inflammation.
I not hugely converse with the immune system as its so complicated but autoimmune inflammation is driven by NF-κB, that induces further pro-inflammatory cytokines (chemical messengers) that switch beneficial genes off.
Natural anti-inflammatrories are Vit D, fish oils, turmeric, resveratrol, green tea, zinc, a clean diet that encourages stable blood sugars and healthy sleep that allow cells damage to repair.
There are combo supplements aimed directly at reducing unwanted inflammation. I use Kapperset by Biotics Research. Others I haven't tried are Life Extension, Cytokine Suppress bye Life Extension and Inflammation-X by LifeSeasons. Just google (autoimmune) inflammation for others.
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Time to quit T3?
GP visit and conversation on T3 advice needed.
sweating and tired 
Reverse t3
