Going to endo on Tuesday - advice please - Thyroid UK

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Going to endo on Tuesday - advice please

Aemdiate profile image

Going to endo on Tuesday for first appointment. It has taken 18 weeks to get an appointment. My TSH was 19.4 in June and my TPO antibodies 2400. T3 and T4 low but just in range. I have been taking 25g of Levo but would like more. I have a visible generalised goitre and trouble swallowing. What should I be aiming to get from this appointment? I still feel pretty rotten. I have three other diagnosed autoimmune diseases and am starting to get sore knuckles and hands on waking. Thank you in advance.

8 Replies

I know, really fed up, unfortunately my GP sent me away to go back to him in September (?!), so I went to a private GP who prescribed the Levo and referred me to an endocrinologist. They didn’t tell me to return and the appointment has taken 18 weeks. I have reached the point where I want to see the endo at my lowest ebb, but at present I am paying a private script for my Levo and all my blood tests. My nhs GP should be struck off as far as I’m concerned. I am worried that after 18 weeks they will just order some new bloods and send me away for another 3 months.......

Treatment so that you feel well ....

In my experience, they probably won’t understand how poorly you feel. Your raised TSH shows that the dose is too low for you. You’re on a very low dose.

Aemdiate profile image
Aemdiate in reply to Aurealis

Thank you Aurealis. I’ve forgotten what feeling well is like. I can barely get to work to pay the mortgage and spend all my spare time in bed. I’m losing hope of feeling well again. This is hard and no one in the NHS seems to care.

Aurealis profile image
Aurealis in reply to Aemdiate

You will get better with correct treatment. I know that description so well, have lived it, not nice. Make sure you come out with an agreed dose increase. Good luck

Aemdiate profile image
Aemdiate in reply to Aurealis

Thank you so much, understanding is everything.

Many of us here have been through the same struggle. Keep reading, find a decent GP and educate him/her too if needed. You will feel human again at some time but you are waaayyyy underdosed, and at that dose, your GP has done you no favours at all. Hang on in there - it does get better! Hug.

Thank you so much everyone. I am up to 50mgs to be revised in mid December and have full bloods including ferritin, vitamin D, HBA/C (no idea) at the lab at the moment, with an ultrasound for my enormous goitre being booked for a couple of weeks time. I feel like I might be getting somewhere and liked the consultant. He is aiming for a TSH of 2.5. I am seriously considering the AIP diet for the antibody situation. It is very helpful to come here for support and advice, thank you all once again.

Check out stop the thyroid madness on facebook. It's helped me tons!

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