T4 vs T3

[Millea]

I've have Graves' disease and thyroid eye disease and have brought my hormones under control using carbimozole and propranolol over the last year. However, last endo appointment I found I had a new endocrinologist. He said as my Levels were now fine I should stop the propranolol and reduce the carbimozole to 5g per day from 10g - which had been my maintenance dose. Which I did in March. However, I have not been given a printout of my March blood test nor my subsequent June test. I have requested them several times by phone from endo secretary and finally last week I got a letter from endo just giving me a T4 figure and repeating his instructions regarding reducing the carbimozole. Firstly, my understanding is that T4 level doesn't necessarily give you the full picture as T4 needs to be converted to T3 and it's the T3 that the body needs and uses. Am I right about this? I have again asked for both blood test results be sent to me with the ranges. I live in hope! Since reducing to 5g carbimozole I have seen increased symptoms again - hair falling out, skin gone weird feeling, brain fog, Insomnia and tired all the time even if I sleep - worse still my eyes, which had almost completely calmed down, have now started to swell and weep again. Now endo sent message today saying I should cut down to 5g every other day!I'm going to ignore this as I really can't face any more increase in my symptoms. What is he basing this on giving he hasn't seen me since March and my next appointment isn't until October. I can't bear to regress after 2.5 years of treatment to get this under control and I feel like every time I see the endo and I tell them I'm still getting symptoms and they tell me my bloods don't support that. They make me feel like I'm lying or a hypochondriac. Any comments especially regarding the T3 vs T4 question would be really appreciated. Thanks.

[elderflower2016]

Without knowing your results, I can only guess that they are trying to wean you off the Carbimazole as they think you no longer need it. They would do that if your results in June still showed a low T4 despite you having reduced to 5 mg/day since March.

My reading indicates that it's possible to titrate the carbimazole dosage based on T4. Yes it's better to have the complete picture with T3. But if you have a low T4, it's likely that T3 would be low too.

So if I were you, I would NOT just ignore your endo's recommendations. Try and find out what your results were in June. If you had a low T4, reducing to 2.5 mg/day makes sense.

[shaws Administrator]

The most stupid remark "they tell me my bloods don't support that". It is your clinical symptoms they should be taking more notice of but probably know none as the 'modern' method is all down to a blood test. Considering the TSH for instance. If we have a blood test later afternoon it will be lower than at 6 a.m. in the morning. It is always higher a.m.

Members who have had Graves will respond and I am sorry your eyes are also being affected again.

It is a ridiculous situation - no doubt about that.

[Millea in reply to shaws]

Thank you - yes you are right - both symptoms and bloods should be looked at and attention should be paid to both.

Really appreciate you responding.

All the best.

[Millea]

Thank you. Your info on T4/T3 is reassuring. I am still loathed to reduce carbimozole though as I want to see printouts of both blood tests before reducing further especially given that my symptoms are already returning.

Thanks so much for responding - Thyroid Uk is such a great community.