Help with my T3 action plan: Hi all - so sorry... - Thyroid UK

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Help with my T3 action plan

jsy_girl profile image
10 Replies

Hi all - so sorry for bombarding you with posts recently - I find your steer so useful in making a decision about what to do next.

I recently posted that I am feeling some symptoms when beginning to take T3.

Day 1 - 5mcg - tight chest

Day 2 & 3 - 2.5mcg in morning - ok

Day 4 - 5mcg split dose - ok

Day 4 - 5mcg split dose and tbh I felt on top of the world.

Day 5 - 5mcg split dose - felt okay

Day 6 - 2.5mcg in the morning but by 4pm chest was so tight and I got REALLY bad heart burn after eating a kiwi. Couldn’t take the next dose.

Day 7 (today) - 1.25mcg this morning. Feel okay but accutely aware of how I feel and anxious about taking next dose. Plan to take 1.25mcg this afternoon. And probably continue this for a couple of days before trying to go to 3.75mcg first.

Doctor prescribed going from 125 to 100mcg levo and I did this on day 6 above.

Previously several people mentioned I could have issues because my iron is low. I notice the stop the thyroid madness website also references this to be an issue.

I also note it can take a while to work this out and dosing should only be increase gradually.

I need to get in touch with my endo anyway as GP has now flat out refused further blood tests. Whilst I’m doing that I wondered if I should mention to him the reading I’ve done on ferritin and need to introduce slowly and ask if he would be supportive that I only do 2 increases before next blood test. Up to 5mcg and maybe to 7.5mcg by then (but maybe not, maybe just 5mcg). Whilst also working on my iron levels.

My next blood test would be end of March.

Do you think it’s worth me asking this? I’m worried he will say that because I’ve had tight chest it’s dangerous and want to take me off it?

Does my plan sound okay with regards taking a much lower dose and slowing it right down?

Thanks all. Really appreciate any thoughts on this. I’m really upset that this is not going swimmingly and annoyed with myself, but I am really trying. I also bought some more ferrous fumerate and taking 2 tablets late morning and a further one before bed. Hoping just taking a tiny bit of t3 will additionally help get my iron levels up!

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10 Replies
EbonyEvans profile image
EbonyEvans

continuity and patience when starting T3 years ago was best. Results after a few weeks - months is normal. A week isn’t really enough even though it has a short ‘shelf’ life in the body. Your body has to get used to synthetic drugs again. And needs time to adjust. Small things like vitamin levels and when you take take your T3 play a bigger part in recovery. Also your brand may make a difference. Have you had your ferritin and folate checked? And are your Vit and and minerals okay?

jsy_girl profile image
jsy_girl in reply toEbonyEvans

Thanks EbonyEvans. I am really hoping it will just take time. I just want to ensure I get him on side with that slow and steady approach and not give up on me. I mean, I am paying him so maybe it will be okay... ha ha

Yes folate b12 and vitamin d I would say are all really good although I don’t have active b12 number so I guess that could show something else

My ferritin is low though but I’ve heard a few times that getting that higher can be helped by T3 - a bit of a vicious circle - so I think if I can keep on just a low t3 dose whilst that improves (if it does hopefully) that would be good. I am supplementing 2-3 ferrous fumarate a day too and using a cast iron pan.

Folate >20 ( 2.5-9999)

B12 789 (120-900)

Vitamin d 110 (50-150)

Ferritin 28 (15-300) but on medichecks it’s c. 50 (13-150)

Btw your dog is so cute with those socks. 🤣

EbonyEvans profile image
EbonyEvans in reply tojsy_girl

Most people start on 5-6.25 mcg and build up. Remember you’re paying him to make you well. Imho, he probably knows best but it’s your body and this knowledge needs to be tweaked to accommodate you. This forum is here to help you. Second opinions etc are welcomed. Possibly better as we’re experiencing it / have experienced it versus his text book studying.

Can you get checked for Hashimotos ? And please make sure your ferrous fumerate is a good brand.

I have your profile picture on a t shirt! Both have blue paws! I added the caption ‘my eyes are up here’ 🤣

jsy_girl profile image
jsy_girl in reply toEbonyEvans

Haha well I’m starting on 2.5mcg 🤣🤣 I’m sensitive.

I had graves and was hyper. I am post RAI.

Had my antibodies tested recently and they were zero. He wants to test ceoliac and parietal antibodies next.

Ah which are good brands of ferrous fumerate? I got it from the pharmacy. It is “remedy healthcare” according to the box.

Oh do you really haha. That’s brilliant. I just love them so much.

tattybogle profile image
tattybogle

maybe i'm being thick ... (or not awake) but some observations ....

Your f4 was not too high on the 125 levo.

The couple of days before you reduce the Levo to 100 you say you felt good /ok.

The day you reduce levo from125 to 100 , you get problem at 4pm.

And some thought's in general .

It IS possible to feel the difference in levo dose the same day ... i do

It IS possible that a 'tiny' amount of T3 is enough for some people.

Could it be that you are fixed to the idea that you should get to a bigger dose of T3 to try it properly , when maybe you really do feel better with just a tiny amount f T3 added to levo at 125 ?

Like i say , perhaps i'm not awake yet and am missing something obvious,, but why not stick with the idea of 125 Levo and a tiny bit of T3 ?... yes i do mean as little as 5 mcg /day.

But then ,never having tried it myself i should probably shut up and eat my breakfast xx

jsy_girl profile image
jsy_girl in reply totattybogle

Haha thank you tattybogle

That’s really interesting that you say you can feel levo same day. It’s taken me till today to feel like that feeling has fully worn off and am going to try and add a third dose of 1.25 so I’ll be on 3.75 and I’ll try that for a week and see how I go.

I think you might be right that I might be better with the higher T4. I might suggest I try that - the higher levo and lower lio.

I am not really fixed to any idea other than Will he be annoyed I didn’t try his prescribed dose and by doing so stand myself at greater risk of being taken off it. And then the dilemma of do I tell him in advance or just do it and tell him at my next appt what happened so it’s too late anyway and I have some blood results that support what I did anyway.

How are the pigeons today?

tattybogle profile image
tattybogle in reply tojsy_girl

pigeons absent... been replaced by gang of gulls who use different tactics...ie,getting cockles off the beach and dropping on tiles from great height.

must admit, my approach has always been to get GP to prescribe as much Levo as possible and then decide how much of it i take based on what i thank i need, If i end up taking less , i'm not telling him, just keep it in hand so i've got some flexibility and autonomy... but then.... i don't like being told what to do.

I also , i have always done the - do it first , go for the blood test , and tell them at the blood test what i've been taking -approach.

But i do appreciate it's a bit of a different thing with T3 prescriptions being so much more likely to be withdrawn or reduced.

But you ARE an equal partner in these dose decisions .. even if 'they' don't act like you are.

jsy_girl profile image
jsy_girl in reply totattybogle

That’s where I’ve gone wrong. Should have taken less when I was on 150mcg 😂😂😂

Ooo the gang of gulls are much more reminiscent of a Hitchcock horror.

Ok I’ll see how I get on now I’ve done this reduction, do the lio my way and see how I feel for the next blood draw. Suffice to say I expect my levo will come back up again. Fingers crossed my iron comes up by then too!

helvella profile image
helvellaAdministrator in reply totattybogle

It IS possible to feel the difference in levo dose the same day ... i do

It has been subject of an ongoing discussion here, for years. Some people take levothyroxine, even a very small amount, and notice it within minutes. (I have witnessed the change it can make such that even an observer can recognise - not just the subject.) Others make big changes yet notice nothing that day, and possibly not for several days.

We can speculate as to why, but I have never seen it as a research topic. Though it should be very interesting to investigate.

jsy_girl profile image
jsy_girl in reply tohelvella

Thank you helvella. Maybe @tattybogle is right then and the two things together had an effect - it’s all a mystery. So long as I’m not doing something majorly wrong

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