Hi I’ve been experimenting with T3 for a few years now (tiromel). I’ve started at a quarter of a 25mcg tablet and the highest I’ve gone is a half of 25mcg. I’ve randomly been getting bad facial rashes which were so bad at Christmas my GP had me tested for lupus. Was told my mast cells are reacting to something. After a bit of research I found out that T3 can cause this reaction. I also don’t feel great. Really bad joint pain. My lowest T3 has been 2.6 and my highest 3.9 (whilst not on T3). I have been having 2 Brazil nuts every day which I think might of helped raise it to 3.9. Being on T3 meds has never really raised it anyway. I’m on 100mcg of levothyroxine as well. I can’t be 100% sure that it’s the T3 but I stopped them at Xmas, and my blotches went. Restarted last week and now every time I touch my face I get the tingling before a red blotch appears. This was my last results. Having stopping the T3 at Xmas
Can you raise T3 naturally: Hi I’ve been... - Thyroid UK
Can you raise T3 naturally
Do you think you may be reacting to something in the T3 and also have you tested for the DIO2 gene? x
Yes I think it may be the T3 but I can’t be sure. I’ve never had the DI02 test. I’ve read it’s a bit of a faff x
Well I have a really great German Consultant Endocrinologist who starting fighting to get this test done on the Nhs but covid stopped it for now. He absolutely believes that the gene affects absorption. I have never been able to tolerate T4 and I have a variant from 1 parent. I am on T3 only at 20mcg 3 times a day. My daughter is now under him and is really struggling and he wants her to get gene test too as he thinks that it's likely she has gene deficiency too and probably needs dual replacement with T4 and T3. What brand of T3 do you take? x
Tiromel from turkey x
Oh I just wondered whether it was Tevo as it was not great for me. I don't know about Tiromel sorry x
I had the gene test done at Blue Horizon,where I found I had the DIO2 variant from both parents(homozygous)this explained to me why I had constant ectopic beats on thyroxine & frequent episodes of tachycardia that were extremely debilitating.I occasionally get them on T3 & NDT but they don't last long.
That's really interesting to read because i have it from one parent but cannot tolerate T4. They have found me to have ectopic beats too but no palpitations that i can feel and are referring me to a cardiologist. I have been worried about it.
I was on thyroxine for 16 years during which I regularly had attacks of tachycardia which forced me to lie completely flat until resolved,due to feeling very faint & breathless. I was prescribedT3 in 2014.After adding 5mcgs to a lowered dose of thyroxine over 3 days,I developed tachycardia that was still going after 5 hours.My GP instructed me to go to A&E.I was kept in overnight & the tachycardia stopped after 9 hours(my heart races at almost double speed when I am having an episode,which usually resolves quickly)all outpatient heart tests later diagnosed SVT(supra ventricular tachycardia)this is not AF & does not require medication.3 months later I dropped the thyroxine completely & had 2 good years on T3-only.
I have only had two further long-lasting attacks,when I tried to re-introduce some thyroxine.
That sounds awful. I have had no palpitations and my arrhythmia was just picked up on a routine test x
I’ve read into doing this test but it says about contacting GP etc. Was it a faff to do? X
I did not involve a GP.The test I had with Blue Horizon was not complicated.
Can I ask if they sent you your results direct and how much it was please? I paid £91.50 including paying the postage for them sending it back but have to add on another £3.50 to return the sample back to them x
I have used Regenerus and all you do is order on their site and when returning you put your endocrinologist name if you have one or even a gp. It's because it goes to them as it's a gene test or you can pay an extra £65 for a doctor to ring you to go through your results. Wouldn't personally pay any extra but it's an option x
Hi Debs, I just found this conversation while I'm trying to find out how to get my Thybon if I should move Germany to the UK. Could you tell me who your German endo is? I have a nice GP here who agreed to prescribe me T3 after T4 was a disaster for me, but I have many, many other issues, including mast cell activation syndrome. This Gene Test sounds very interesting! Thank you!
Hi - I have been feeling like a walking experiment in T4 to T3 conversion recently! Antibiotics - ugh!
I have been doing a bit of reading as well and here are some ideas I have.
1. 20% of conversion happens in the gut, so beneficial bacteria are a good idea. I take a supplement and eat raw kimchi when I remember that I have it in the fridge. If you think you have an overgrowth of bad bacteria you can try a an oregano oil supplement to kill that off, in theory. I’ve been burping pizza without the pleasure of eating any, so I am less certain in practice.
2. If low carb intake reduces conversion, then making sure to eat sufficient carbs might improve it.
3. Some conversion takes place in the liver and my conversion gets hit badly the morning after the night before when the poor old liver is too busy cleaning up the results of my little sesh to be doing any converting. No multitasking there, apparently.
4. Some conversion takes place in the hypothalamus and pituitary. Not having an adenoma would perhaps help me here, as well as not having a polymorphism of gene D102, which I may or may not have. I plan on keeping the adenoma - I made a deal with it years ago. I am interested - but don’t know - in what role TSH has within conversion. I suspect an ultra low TSH probably doesn’t help, but I am not sure about this either way: ignorance, on my part. But I think I was probably getting better conversion on 50 mcg levo and 10 mcg T3 than on 75 mcg and 10 mcg, which is what I am on now... I did a blood test yesterday so I guess I shall shortly find out.
5. I agree that selenium is supposed to help conversion and I feel like it is the supplement I particularly seem to miss (along with d) if I forget to take them or only take a random handful of something when I remember.
6. Eating mostly meat and vegetables and no “packet” or “tin” food seems to improve my well-being massively.
You probably knew most of that anyway, though!
Just a thought - do you think it could be a filler in the brand of T3 which is causing the issue or that it is it something related to the fact that we take T3 in bigger doses than the body makes it?
It’s all such a minefield, isn’t it?
Thankyou. That is all very informative. I do take 30mg of lansoprazole due to chronic gastritis a few years ago. I also try to eat lowing carb but I’m up and down with that lol. The two Brazil nuts a day for selenium definitely has raised it from 3.5 to 3.9. I had one test where my T3 was 2.6 and my t4 was 10.6 but a couple of weeks later my t4 was 16 and T3 was 3... I’m not sure what’s going on with me. My last private test said I was slightly over medicated with t4 but I don’t feel it. It’s certainly a minefield to get through 🥴
I get the same as well. It's not so much the T3 but has more to do with conversion. If you have poor conversion on 100mcg and then you add T3 it can make conversion worse ,thus the acne/rash. You'd probably find that if you lowered the Levo significantly and added the T3 that you wouldn't get the rash, at least that's the case with myself. It's a frustrating thing because you think you're going to top up your T3 but then it doesn't seem to quite work that way.
Lowering the T4 will lower the T3 as well.
Adding a lot of T3 to T4 will also lower T4.
I did do that last year. I was on 75mg Levo and 12.5 tiromel. I put on lots of weight and still got a rash but I also think I reacted to mannitol who’s is in teva brand levo. It’s all very confusing when you are trying to work it all out yourself. It’s certainly interesting that it happened to u though. What ratio do you find works for you? X
I have no damn idea or else I wouldn’t be on this board. LOL
I believe mast cell activation can be related to histamine intolerance ... not sure how that fits in with the T3 issue but may be another avenue of enquiry?
Yes you’re right but I’ve read quite a few articles about T3 triggering the mast cell thing. I think I’ve definitely got histamine intolerance but as usual during covid docs not interested.
Here is a good podcast about histamine intolerance :phoenixhelix.com/2016/01/16...
08:35 1
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T3 is co-stored with histamine in mast cell granules or is degraded to T1AM and/or TA1. T1AM and TA1 derived from circulation or produced inside mast cells trigger mast cell degranulation releasing T3 and histamine which mediates pain, itch and central effects including
ncbi.nlm.nih.gov > articles > P...
Thyroid Hormone, Thyroid Hormone Metabolites and Mast Cells: A Less ...
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Remember that conversation of T3 works better when the liver is not overloaded. gently cleanse it regularly.
I feel your pain, I started adding t3 to Levo 7 weeks ago . All good at first started on 5mg of t3 a day with 100 of Levo, upped to 10mg a day after a week or so, then 15 then 20 which was my prescribed dose. Felt so much better generally, much less joint and muscle pain, slept better, hair and nails better etc. But after a bit started to just feel a bit agitated and my skin was itchy. All over at first and then concentrated on my face, broke out in spots and face felt burnt almost and like somebody was sticking red hot needles in my face. I had a sneaky suspicion it was the t3 so I lowered the dose back to 10mg a day split in to two doses a couple of weeks ago now. The skin feeling is still there but it has subsided a bit. I’m gutted as was feeling so much better but can’t deal with the skin issue forever. I’ve got my first blood tests tomorrow morning since adding the t3 so will be ingesting to see what they say. Really hope you find a way to feel better and if I discover anything that helps I will let you know. I am going to ask to try a different brand of t3 when I have my appointment next week just to see if that helps. Best of luck 🤞🏻
I got the burning feeling too. Sometimes I would touch my face and I feel like a tingly hot feeling. I’d then have a red mark. At one point my face was horrendous, and burning. I ended up at A&E but because it was an ongoing issue they gave me antibiotics 🤷♀️ and told me to see gp. Which I’d already don’t and they weren’t interested x
I had that too when I upped cytomel to >10. Burning rash on my face. And acne.
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