time to go it alone I think: Dear all, I was... - Thyroid UK

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time to go it alone I think

queridalady profile image
8 Replies

Dear all, I was taking 75T4 and 20T3 and of course my TSH was surpressed @ 0.01. so my endo increased my T3 to 30 and removed all of my T4. I told him this would make me ill but he insisted. So I did as he asked and 6 weeks later I felt really unwell, couldnt get up the stairs without being breathless, bloated face and body etc etc. So I went to see my GP to demand the T4 back and she gave it to me but wrote to let my endo know. This was about 6 weeks ago. I saw my endo last week who firstly told me off for seeing a GP and not "living with it" until I next saw him. He then said that he will be reducing my meds until he increases my TSH and if I dont stick to his dose he will remove the T3 all together. I asked how he intended to increase my TSH without making me unwell. He told me that I would have to compromise on some of my symptoms. So he has dropped me to 20T3 and 75T4 for 6 weeks and if my TSH doesn't come up he will drop me to 50T4 and 20T3( a dose i have been on before and wasn't well on) There is no hope is there really? Compromise on my symptoms? On 75T4 and 30T3 and my results were T4 9.6 (9 -21) and T3 4.2 (3.6 - 6.5) and he says I am "over replaced" I asked how I could ne over replaced with my T3 and T4 levels as they are and that I have absololutely no signs of being hyper...he said that my TSH says so and that is all that he cares about.

So I have bought some Tiromel and I guess I will start with that if I begin to feel unwell again. Crazy thing is that he says that my TSH shows that my body is stressed even though I feel fine on this dose.....yet when I lower the dose as he has instructed before my body feels very stressed and unwell. But apparently that is not the case???

Why does he not care about me rather than an outdated blood test? :(

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queridalady
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8 Replies

Life's too short to bother with these imbeciles. He's covering his back and protecting his job, like so many do.

Clutter profile image
Clutter

Queridalady, Ditch the endo, this guy is going to keep you ill. If you self medicate you probably won't need an endo at all. Despite suppressed TSH, your FT3 was low on 75+30. You could try 40mcg T3.

queridalady profile image
queridalady in reply toClutter

Thanks Clutter. I really want to increase my T3 but if I do my heart rate goes up. I think its because my Ferritin is so low (at bottom of range) I am trying to increase ferritin but its such a slow process. FED UP :(

Just a question, do you split t3 into two doses? My endo has told me to split the 20 into 2 doses but I tried that and dont feel like I am getting enough in the morning if I only take 10 with my T4. Maybe I could add another 5mg in the afternoon?

Clutter profile image
Clutter in reply toqueridalady

Queridalady, Low ferritin can make it difficult to tolerate dose increases without feeling hyper.

T3 increases heart rate an hour or so after taking it. It should calm down to normal within 60-90 minutes. Try 15mcg in the morning with T4 and 5mcg in the afternoon or evening. Experiment to see what suits you.

I take 75/100mcg T4 + 20mcg T3 on waking and 10mcg T3 at bedtime. The ETA recommend the larger dose should be taken at night. Other people take considerably higher doses x 1 daily, while others take T3 up to 4 x daily.

Jazzw profile image
Jazzw

Your endo is dangerous. Compromise indeed. I'm pretty sure he wouldn't compromise if it was his own health at stake.

Rapunzel profile image
Rapunzel

drmalcolmkendrick.org/2015/...

Don't let him take your 'sweeties' away. You have my sympathy. Perhaps he would like to just 'live with it' if he walked a mile in your moccasins. God, these reptiles make my blood boil...

Listen to your body. There are many wise ones on TUK and TPAUK who can help.

My best to you - you're not alone, remember x

queridalady profile image
queridalady

thanks for your lovely message Rapunzel. you are right of course! xx

queridalady profile image
queridalady

thanks everyone. i really appreciate your thoughts xxx

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