T3 battles

[ScriptMaz]

I’m on T3 only, taking 30mcg in one dose daily. Spoke to the endocrinologist this morning and after explaining to her that the reason I don’t take levothyroxine is because it made me far worse she said she’s never heard anyone that’s happened to. I told her I currently have symptoms of being under medicated (aching joints, burning feet, constipation) and she suggested introducing levothyroxine. I told her I would never take that again as it left me not wanting to live anymore. Why do doctors not listen. She has reluctantly agreed to up my dosage of T3 to 40mcg and booking me in for a cortisol test. She also said it’s highly unlikely that I will lose the 2 stone I put on whilst taking levothyroxine even though I eat healthily and exercise every day now

[puffyface]

This happened to me when I started taking levothyroxine. I am now on T3 only, and have been for years. I take 20, morning and early evening. I puffed up like a balloon while on levo and felt awful. It was a bit of a bumpy ride to start with, but because of what had happened, they tested for other autoimmune conditions, starting with an ANA test.

I am now feeling much better, have lost all of the weight I put on, and quite a lot more. T3 spread out over the day has suited me. I definitely eat healthily and exercise most days...but not to excess.

Perhaps spread the dose out, taking 20 when you wake up, and 20 early evening? If that doesn't help, perhaps they should do some further investigation.

Good luck!

[ScriptMaz in reply to puffyface]

Thanks so much for the advice. I will definitely spread them out into 2 doses. I’ve felt better moving onto T3 and hope the higher dose will make me feel almost back to normal and maybe kickstart a weight loss

[Sparklingsunshine in reply to ScriptMaz]

Two is often what Endos recommend but I'm reading Paul Robinson's book, Recovering with T3 and he recommends 3 or even 4 doses a day to maintain T3 levels and mimic what your thyroid gland would naturally produce throughout the day. It's very individual and trial and error. He suggests the largest dose in the morning when rising and a smallest dose in the evening. That said some prefer one daily dose, but its worth experimenting.

[ScriptMaz in reply to Sparklingsunshine]

Thanks for the advice. I was a bit hesitant to try 20 and 20 since I’m currently on one dose of 30. I’ll see how it goes. Maybe on that advice I could do 30 in the morning and a top up of 10 at night

[Sparklingsunshine in reply to ScriptMaz]

Or try 20 in the morning, 15 at lunctime and 5 in the evening. Or 20, 10 and 10. Some prefer one daily dose of T3 but if its not working for you splitting your dose might be an idea.

[DippyDame]

I wish the powers that be would educate medics properly in terms of thyroid disease

Your situation is entirely understandable.....I'm one of several here who cannot tolerate replacement T4. After about 18 years and with increasing doses ( max 225mcg) of Levo I was left, 7+ years ago, barely able to function

I knew nothing about hypothyroidism so knew it was time to learn....I arrived here and my journey is related in my bio.

I now need high dose T3-only to function!

Weight gain is often caused by slow metabolism the consequence of low T3. It is unlike other weight gain. Diet and exercise is not the solution.....that, is a therapeutic dose of T3!

I lost weight once my dose was correct

At least the endo did increase your dose.....give it 6/8 weeks and monitor changes. You may even need a further increase so don't lose heart if 40mcg doesn't help.

I take my full large dose ( now 125mcg) at bedtime and that works for me....some people split the dose but I found that totally ineffective. It's trial and error to find what dosing protocol works for you.....nobody can tell you that, only your body!

Well done for achieving the increase and best of luck going forward

[ScriptMaz in reply to DippyDame]

Thank you. I do think I’m heading in the right direction with the T3 and I’ll know when I’ve hit the right dose. I think the doctors worry about over medicating patients but don’t care about under medicating them. If I don’t feel better on 40mcg I will have no qualms about upping that too.

[greygoose]

she said she’s never heard anyone that’s happened to

Someone posted the other day saying her doctor had said she'd never heard of... They say it all the time, and either they have no other thyroid patients, or they're just not listening to them. Or, she's lying through her teeth to undermine and gaslight you. It happens. But, the things doctors have never heard of would fill a book! Wish someone would write and publish it!

[ScriptMaz in reply to greygoose]

Honestly it’s so frustrating that they don’t listen. The only reason the endocrinologist put me on T3 is because of educating myself from forums like this and asking for it. It’s awful that you have to battle doctors like this. They’re the ones who are supposed to help

[greygoose in reply to ScriptMaz]

Hmmm... I'm not sure they see it that way. They seem to think that they're the ones who are supposed to control.

[ScriptMaz in reply to greygoose]

All I ask is that they listen to the symptoms rather than look at numbers. I had a thyroid test done about a month ago and the doctor phoned and said my TSH was 15. I knew from this forum that it didn’t really matter but since they care about it it would help in my quest for them to up the dosage

[greygoose in reply to ScriptMaz]

But they know nothing about symptoms. They know very little about thyroid altogether. They are trained to look at the numbers and that's all they know. It's their basic training that needs updating, it's too late for those that are already 'qualified'.