Losing hope

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hi there,

im 36 and was diagnosed with Graves disease in around 2017, i was given medication to control my overactive thyroid but it wasnt successful & so i made the decision to have a total thyroidectomy which went ahead in 2020.

Since then my thyroid levels have remained unstable, the doctors were just increasing & decreasing my levothyroxine dose without really looking into it, i asked to be re-referred to the endocrine specialist who i finally saw in November 2021, the guy i saw was really awful and patronising and he basically said that there was only 2 reasons to why this would be happening, number one I have Celiac disease or number 2 I'm not taking my medication correctly. I made it perfectly clear that I wasn't happy with the way he was speaking to me and that he's basically calling me a liar and he tried to make it better by saying that he'd organise blood tests to check for celiac disease & sent me on my way & said we'd catch up in 6months!!

The test result for Celiac disease came back negative and the only thyroid test done was TSH which was 21.9 & freeT4 which was 10.6, he told my GP to put me on a Levo dose of 100mcg one day and 75mcg the next which is what I'm taking to this day.

I next had a blood test in the beginning of March organised by my GP, I had TSH done which was 30.30 and free T4 which was 10.6, nothing was changed with my meds.

I had a letter in July 22 telling me I had a follow up appointment in November with the endocrinologist. Ive just had that appointment today and to say it was a waste of time is an understatement!!! I was seen by the same guy i saw in 2021 and he was just as awful to me, if not worse! He didn't ask me any questions about how i was doing he told me that as there was no recent blood tests he couldn't do anything, i said that i wasn't happy & that blood tests should have been arranged prior to this appointment that I've come all this way for absolutely nothing and he shrugged his shoulders and told me I'd have to call my GP to arrange to have some taken. He told me that if they remain unstable my only option is to come back to the hospital every week to have a high dose of levo given to me!!!! I tried asking him questions about this as i have high blood pressure for which im taking 3 different tablets for & i wanted to know if taking such a high dose of Levo was safe and he started laughing at me!!!!

i came out of that appointment feeling so low and upset, i made a call to his secretary and explained and told her i want to be taken off his list and to see someone else in future.

I don't know if it means anything to anyone but the brand of Levo I'm taking is and always has been by Teva. I tried asking him about maybe trying a different brand of tablets in my first appointment in 2021 and he wouldn't hear of it he said they're all exactly the same.

I was wondering if anyone could offer me any advice because im literally at rock bottom, im fed up of feeling so rubbish and on top of that to feel like noone believes me. I cant afford to see a private doctor.

thanks for reading 😦

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    Hi. I know this was written a long time ago. I hope you have found help by now. If not, the best place for continuous conversation and information is at Health Unlocked - look for Thyroid UK.


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